tag:blogger.com,1999:blog-74605524194062252222024-03-19T00:33:33.574-04:00Down Syndrome UprisingPsychojenichttp://www.blogger.com/profile/02936930614210195529noreply@blogger.comBlogger47125tag:blogger.com,1999:blog-7460552419406225222.post-28083516027913709502013-12-02T11:14:00.001-05:002013-12-03T06:23:32.150-05:00International Day of Persons with Disabilities - Blog Symposium<div dir="ltr" style="text-align: left;" trbidi="on">
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What would a truly inclusive society look like? What can we do to create and improve inclusion today? How are you working towards a more inclusive society? Which doors are open, which remain shut? <br />
<br />
3 December 2013 is the <b>International Day of Persons with Disabilities</b>.<br />
<br />
The theme for 2013 is "<b>Break Barriers, Open Doors: for an inclusive society and development for all</b>." Read more <a href="http://www.un.org/disabilities/default.asp?id=1607">here</a>.<br />
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We will host a blog symposium on this blog on 3 December 2013 to draw attention to what the United Nations has defined thusly:<br />
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"Around the world, persons with disabilities face physical, social, economic and attitudinal barriers that exclude them from participating fully and effectively as equal members of society. They are disproportionately represented among the world’s poorest, and lack equal access to basic resources, such as education, employment, healthcare and social and legal support systems, as well as have a higher rate of mortality. In spite of this situation, disability has remained largely invisible in the mainstream development agenda and its processes." <br />
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Link up your post and read about others' thoughts and experiences on breaking barriers and opening doors, inclusion, and development. Let's do our part in helping to increase the visibility of those with disabilities. <br />
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Linky will be live here on 3 December 2013, 12am EST. <br />
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(For step by step instructions to add the linky to your post, <a href="http://downsyndromeuprising.blogspot.ca/p/adding-dsus-blog.html">click here</a>.)</div>
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Down Syndrome Uprisinghttp://www.blogger.com/profile/14015434768396941866noreply@blogger.com1tag:blogger.com,1999:blog-7460552419406225222.post-71870036542965186022013-10-28T11:36:00.000-04:002013-10-29T12:06:49.683-04:00Advocacy<div dir="ltr" style="text-align: left;" trbidi="on">
<br />
<span style="font-family: Verdana,sans-serif;">Down Syndrome Awareness Month (US) is slowly drawing to a close.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">As you all pretty much know by now, I'm not exactly a fan of "awareness". <b><a href="http://downwitdat.blogspot.ca/2013/03/make-world-down-syndrome-day-day-of.html" target="_blank">At all, actually</a></b>.
There tends to be a lot of confusion surrounding this and terms like
awareness, advocacy, anger, prejudice, hatred...words that we encounter
almost every day in this month of 'awareness' (if not every day for some
of us). It is this confusion that I hope to address.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">To begin with, what most people attribute to awareness is actually<i> advocacy</i>. When you teach, correct, explain, speak out, represent, whether subtly or more energetically, you are <i>advocating</i>
for your cause, not spreading awareness. Awareness comes in the form
of recognition. Trust me, if the demeaning imagery that people post in
my groups and on my page is any indication, people are very aware that
Down syndrome exists. They may be utterly wrong and hateful, but they
know it exists. People with DS may (or may not) have reached partial
visibility, but <i>more</i> awareness is not going to change that. It's
not that simple. Advocacy will, by continuing to promote and further
the cause towards true inclusion. </span><br />
<span style="font-family: Verdana,sans-serif;"> </span><br />
<span style="font-family: Verdana,sans-serif;">Over the years I've
become a little soured with awareness campaigns anyway. I have always
been leery of the trinkets and T-shirts and the like; the object may
wear the symbol of whatever it is that it claims to represent, but the
money you just paid for that shiny thing just lined a private pocket.
The idea of someone profiting off of these sorts of things makes me ill,
frankly. To give a well known example, October used to be very pink
for me. Instead of surrounding myself with mugs and pens and every
manner of pink object, instead I would participate in Grand Dessert
night with a group of colleagues. Any money spent was out of our
pockets and 100% of the funds raised by the event went to Breast Cancer
research. But still, everywhere you look this month: Pink. Football
players wearing pink shoes, pink towels,
pink gloves. Pink mugs, pink bracelets, pink soup cans and pink memes.
"Pink-washing". <b><a href="http://www.huffingtonpost.com/leisha-davisonyasol/october-pinkwashing_b_4102424.html" target="_blank">This survivor</a></b> puts it more succinctly than I ever could. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Is it fair to compare Trisomy 21 to breast cancer? No. Down syndrome is not a disease. Yes, there is a motley collection of
conditions that may or may not accompany the triplication of chromosome
21, but in itself it is not a killer, nor is it something to
"overcome". One does not battle Down syndrome, you don't fight your
chromosomes. It simply is: a visual, intellectual and often physical disability. There is no "hope" needed, other
than one day perhaps society will realize how society itself disables
hundreds of thousands with the condition every day. It is not something to cure. Much like most
of the pink paraphernalia too, most of the DS awareness trinkets
generate profits for private pockets... or worse, organizations that
do not see the civil rights of those they claim to represent as their
main focus. They are multi-million dollar corporations, after all.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Awareness,
sadly, rapidly turns into a forgotten pile of overpriced junk and a
banner that you walk by without giving a second glance. Advocacy, on
the other hand, lingers. Even if a person disagrees with your stance,
they are at least thinking about it to formulate an answer.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">The
beauty of advocacy is that it can take many forms. It can be a quiet,
one on one discussion. It can be a discussion group, either in person
or online. <b><a href="http://downwitdat.blogspot.ca/2013/04/the-new-face-of-advocacy.html" target="_blank">It can be a blog</a></b>,
an article, a visual representation or piece of art. It can be a
petition, a rally, a march. You can pick what works for you. Awareness
is passive, effortless and the results negligible (in fact,<b> <a href="http://utterlyunpublishedauthorsdaughter.blogspot.ca/2013/10/when-we-slip-and-slide-lament.html" target="_blank">it can further the "othering"</a></b>
of those it intended to promote to inclusion). Advocacy involves a
little effort and the results are obvious in the disability community in
the last 50 years.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Advocates ask questions and wonder
how things will get better and what they can do to affect that change.
Sadly, in the world of DS advocacy, especially since it rests primarily
in the hands of parent advocates, most people are fearful. Fearful of
the future, fearful of their own advocacy and dare I say it in some
cases, fearful of their own children. In Western culture, emotions are
considered suspect, unproductive and the antithesis to thought or
rational discussion. As I've said before, <b><a href="http://downwitdat.blogspot.ca/2013/08/anger.html" target="_blank">I disagree wholeheartedly</a></b>.
Anger can be a tool, a motivating force. Anger can be the impetus, the
catalyst that gets one moving towards affecting change. Passion is
what sustains that fire.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Sadly, there are many folks out there that are terrified of the
possibility of insulting someone that might be an ally. This in itself is a
post for another day, yet it bears mentioning that anyone, myself
included who asks <i>why</i>, who rejects this model of 'advocacy' is
considered "hate filled", dangerous and ultimately a crack pot. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">I
think folks need a reminder of what hate looks like. This was posted to
my <a href="https://plus.google.com/u/0/communities/117982864602284769488" target="_blank">Google community</a> a few weeks ago: </span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUGiZqo_YwYd6gAqcZqtVVoBcocaxfxTuA-57GwcEVy0XiOKvwG7ncQiLQ86xyis6j4-oKs48jtKsmJWD-kTpa6I9HA0VvlwDhaUM1dy6RbvO3H3qvu8vi3-3njg4opwvdk83cWNoqrg/s1600/2013+-+1.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="273" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUGiZqo_YwYd6gAqcZqtVVoBcocaxfxTuA-57GwcEVy0XiOKvwG7ncQiLQ86xyis6j4-oKs48jtKsmJWD-kTpa6I9HA0VvlwDhaUM1dy6RbvO3H3qvu8vi3-3njg4opwvdk83cWNoqrg/s400/2013+-+1.jpg" width="400" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">[Image: caricature of an adult male with Down syndrome. The caption reads</span><br />
<span style="font-family: Verdana,sans-serif;">"Congratulations, your kid has Down Syndrome!" The word balloon</span><br />
<span style="font-family: Verdana,sans-serif;">from the man reads "I can count to potato".]</span></td></tr>
</tbody></table>
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">And then there is this: <b><a href="http://badcripple.blogspot.ca/2013/06/murder-and-hate-crimes-part-ii.html" target="_blank">neglect and abuse perpetrated by family</a></b>, not to mention murder or attempted murder, stories of which are not decreasing in prevalence. There is this, the historical <b><a href="http://downwitdat.blogspot.ca/2012/10/a-brief-history-of-down-syndrome-part-5.html" target="_blank">systematic disregard of the those deemed "unfit"</a></b> . Let's not forget the <b><a href="http://downwitdat.blogspot.ca/2012/10/a-brief-history-of-down-syndrome-part-6.html" target="_blank">wholesale extermination</a></b> of those same people. Not in the least is the systematic <b><a href="http://downwitdat.blogspot.ca/2013/07/a-brief-history-of-down-syndrome-part-7.html" target="_blank">isolation, abuse and neglect of hundreds of thousands</a></b> of lives at the hands of 'caregivers'. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;"><i>This</i>
is hate. This is the stuff that motivates things like the image that I
posted above and the concept of "control" and the same disregard that
is being utilized <b><a href="http://www.upworthy.com/something-sickening-is-happening-to-some-of-our-schoolchildren-and-you-probably-have-no-idea" target="_blank">here</a></b>.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Asking why? <i>That</i> is not hate. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;"><b><a href="http://downwitdat.blogspot.ca/2013/08/anger.html" target="_blank">I am angry</a></b>
about continued injustice. I'll wear that mark, your tattoo for that
one. But, it's for a damn good reason. I am passionate about this
subject. I will continue to rattle chains and ask questions. It is
what I do.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">People, regardless of ability, are people and should be accepted unconditionally. <i>Acceptance</i> is not something that is earned or has to be proven. <i>Inclusion</i>
is not something that has to be begged for, pleaded for, hoped and
wished for, tiptoed around, afraid the eggshells will crush. Both are
words that get bandied about as well. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">That's the awareness we should promote. Not the awareness of Down syndrome <i>being a real thing that exists</i>,
but realizing how we view and treat people with disabilities. Aware of
the ableism, aware of the paternalism. Ask every single being to
examine how and why they see themselves as superior to others. As
better, stronger, faster. More worthy, in control, able to make
decisions. Aware of their own motivations, rhetoric and able views.
Then we'd be doing something. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">I'd advocate the hell out of that one too.</span><br />
<br />
<span style="font-family: Verdana,sans-serif;"><span style="font-family: Verdana,sans-serif;"><i>[Originally appeared on <a href="http://downwitdat.blogspot.com/">Down Wit Dat</a>] </i></span></span></div>
Psychojenichttp://www.blogger.com/profile/02936930614210195529noreply@blogger.com0tag:blogger.com,1999:blog-7460552419406225222.post-43981731565330629622013-10-23T12:48:00.002-04:002013-11-05T16:58:54.908-05:00Falling Inbetween<span style="font-family: Trebuchet MS, sans-serif;">The other day, as I was rushing out the door to go pick up H, I grabbed Butler's "Giving an Account of Oneself." I thought I had yet to finish the book but when I opened it up, waiting for H to come from his office, I saw that I had underlined the last paragraph. I realized I had finished the book while very pregnant with Jude and thus in the midst of black hole brain that comes with pregnancy. I glanced over what I had underlined and was stunned into a kind of amazed silence. Everything that I had underlined, especially things with exclamation points, addressed the concerns I have been feeling over narratives, scripts, and stories. I loved how these ideas had been germinating for so long and now as I get closer to the year anniversary of finishing the book, I'm seeing the sprouts coming up. </span><br />
<blockquote class="tr_bq">
<span style="font-family: Trebuchet MS, sans-serif;"> "When we come up against the limits of any epistemological horizon and realize that the question is not simply whether I can or will know you, or whether I can be known, we are compelled to realize as well that 'you' qualify in the scheme of the human within which I operate, and that no 'I' can begin to tell its story without asking: 'Who are you?' 'Who speaks to me?' 'To whom do I speak when I speak to you?'" Butler 134 </span></blockquote>
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;"> When I look over the ways we tell stories about having children with Ds (or any disability really) there appear to be two narratives. One says "Life with a child with disability is horribly hard. It's a life filled with drudgery, and hardship. Life with this child even when you love them is beyond stressful. It pushes you,the parent, into awful acts." With this story comes a kind of strange admiration borne of pity. Mothers with "normal" children can look at your story and feel good about their own "typical" kids. They can think things like "Oh you are so strong" which leads people to think that only "special parents" can have "special kids" and they are not that special. Our children become seen as burdens while, we, the parents are portrayed as beyond heroic giving all our actions, no matter how cruel or senseless, a validation. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">In the other narrative is the story of another kind of specialness. Your child is an angel. A miracle. God's love embodied in human form. This story says that our kids love better than other kid. They are sent to us to teach us how to be better humans. The extra chromosome endows them with super powers usually of love. This is the story that tells us that kids with Ds are "sweet but stubborn." The children in this story are always photo shopped beautiful. Perfect and angelic as they gaze out at the viewer. Passive. These are the children people exclaim over but that they don't see as quite human. These children do not grow into adults but are frozen in the world of a glossy 8 X 10.
When I found I was pregnant with a child that had Ds, I found these two stories. There were very few stories where parents were saying "Eh I got a kid." I remember after Jude was born I found the blog 21 + 21 + 21 = ? and fell in love with the header on her blog "We're not sad and life isn't hard. There's a lot of love and that's the way it's going to stay." Here was a narrative that was fitting what I felt about Jude. That fit what was going on in my day to day life. I didn't want to be sad about Jude having Ds. I wanted our life to just keep being our life. A life filled with chaos and beasties. A life where we sometimes felt like yelling in frustration. A life that was often filled with joy but sometimes felt like drudgery because you know after washing the 100th dish of the day it's hard to muster up enthusiasm. Basically here was someone who was saying "This is just life." Down Wit Dat wrote about this as well...about the need for a narrative that showed just how normal life is for her family. </span><br />
<br />
<span style="font-family: Trebuchet MS, sans-serif;">What I would suggest has happened for us is that we hit that horizon limit. We were faced with stories that did not reflect the "you" in our lives, and we had to write something new. We had to find others who were writing something new. There had to be another story because the "yous" we were seeing were not the "yous" in our lives. </span><br />
<br />
<span style="font-family: Trebuchet MS, sans-serif;">I want Jude to find the humanness of herself in the story that I tell about her. When I limit her to a stereotype on either end of the spectrum, there is not a lot of space to be human. In the narratives above, she does not qualify as a human. She qualifies as a flat representation denied the complexity of life. Right now I am the bearer of Jude's narrative because she is a baby and she can't give an account of herself. As she grows, she will ask me to tell her stories as all my children have asked. I will tell her stories about her fits of anger and frustration after getting stuck under the couch again. I will tell her about how she began to sing to me at ten months, and how it slayed me utterly and totally. These stories will accumulate as she gets older, and some day her voice will join with mine in the telling until one day her voice only will stand. But what will remain, I hope is the sheer normalcy of her life. The simple fact that our life did not get harder when Jude entered it. It got better in the sense that all of our children added joy to our family but it was not a miracle sent from God either. </span><br />
<br />
<span style="font-family: Trebuchet MS, sans-serif;">The simple fact is that Jude needs a story about acceptance and that is why I write about Ds. I realized the other day that while I understand why people use the word awareness, I find it insulting. What are we raising awareness about anyway? Do we really need to raise awareness about this third chromosome? Why should we? Jude is a human being and that is really all one needs to know. Her medical conditions or lack of them are not something that anyone besides I and her father need to know. We all have a list of potential health crisis due to genetic material and yet we don't advertise them to the world. I owe no one an explanation as to Jude's appearance. We assume a difference and we seek to narrate it. This what I see in most cases of awareness. It is not what I desire for Jude. </span><br />
<br />
<span style="font-family: Trebuchet MS, sans-serif;">Instead I want acceptance. I want Jude to be seen as she is which is a human being. Acceptance means being able to give an account of oneself that recognizes a relationship with humans. Jude and all people with intellectual disabilities deserve a story that includes failures, successes, giving up, not giving up, being sad, being happy, great joy, great sorrow, and most importantly real relationships with the people around them. Relationships that allow them to be both a "you" and an "I." </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">And because I want this real acceptance--not a tolerance, not an awareness--I am willing to make a stand. It's easy to say the narratives that we tell our own. We lay claim to them. We say they are our accounting and that we have a right to share those stories. But here's the problem. Those stories also involve a "you" and if that you is being denied a chance at humanity is it ethical to share your story? Is it ethical to continue the narrative that dehumanizes? I have said it before and will say it again "Yes you have a right to your own emotions but you don't not have a right to let your emotions spill into the way another person is painted to the entire world." In our world of tell all memoirs we are reaching the peak of what it means to share, to own our experiences and our emotions. We throw out to the glare of the world everything. And sometimes we forget that there is more than just us in these stories. Giving an account of oneself must always include the others with whom we create. So while I may not be able to tell you what to write, I can critique your story. I can challenge it. I can tell another story. If that makes me divisive so be it. For my daughters' sake, for my son' sake, for the sake of those with disabilities of all kinds, I will remember that when I given an account of myself I will always remember that my "I" was not shaped in isolation. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<br />
<blockquote class="tr_bq">
<span style="font-family: Trebuchet MS, sans-serif;">Perhaps most importantly, we must recognize that ethics requires us to risk ourselves precisely at those moments of unkowningness, when what forms us diverges from what lies before us, when our willingness to become undone in relation to others constitutes our chance of becoming human. To be undone by another is a primary necessity, an anguish, to be sure, but also a chance--to be addressed, claimed, bound to what is not me, but also to be moved, to be prompted to act, to address myself elsewhere, and so to vacate the self-sufficient 'I' as a kind of possession. If we speak and try to given an account from this place, we will not be irresponsible, or, if we are, we will surely be forgiven." Judith Butler Giving An Account of Oneself 136</span></blockquote>
<br />
<span style="font-family: Trebuchet MS, sans-serif;">[Originally appeared on Green Tea Ginger] </span>Anonymoushttp://www.blogger.com/profile/09934296564253625199noreply@blogger.com0tag:blogger.com,1999:blog-7460552419406225222.post-67782970421680976102013-10-16T09:52:00.000-04:002013-10-29T12:07:32.966-04:00Keeping it Real<div dir="ltr" style="text-align: left;" trbidi="on">
<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Verdana,sans-serif;">I'm not unhappy. My life is pretty good.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">I know
this will cause many of you to say "duh!" rather loudly, but there are a
lot of people out there that still can't wrap their heads around this.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">We're not unhappy. Life is <i>not</i> hard.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Oh
sure, we have our fair share of poopy diapers and kitchens that don't
clean themselves. There is drama. There are skinned noses, hurt
feelings and juice spilled from one end of my house to the other. There
is <i>life</i>, sure.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">But we're happy.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">There
are a lot of things we would like to change, of that I have no doubt.
My husband is a stay-at-home Dad and I'm pretty sure he'd be perfectly
happy to be back at his old job on those weekends when I work nights.
Surrounded by the aforementioned poopy diapers, swimming lessons, yell-y
kids, an utter lack of privacy, quiet, and a complete thought; he'd be
bananas not to. But, he's not miserable. The little ones go down for a
nap at some point and the big one is content to hang out playing video
games or quietly watching a movie in the mean time. In a related story,
I'd give my (honorary) left nut to be able to stay home with the kids.
Ok, I'd probably work one day a week, but to not have the
responsibility of everything fall directly on my shoulders is a nice
dream too. Something for "when we win the lottery". I think there are
times when we would both change this part of our lives.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">But, we're not unhappy. Not in the least. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Back
in the early days, the just
post-potential-diagnosis-but-not-sure-but-there-is-an-AVSD days, I was
pretty sad. I had a right to be, having just lost an Aunt I cared about
very much (and didn't call much in her final years) and almost losing a
very dear colleague in a horrific car crash. I was also super pregnant
with twins, super heavy, slow, in pain almost constantly and had to
wear "Batman" anti-embolism hose that took me no less than half an hour
to sweat my way into each and every day (and a nerve wracking 5 minutes
to gently fix every time I had to pee, which at that point was
eleventy-zillion times a day). I was very sad when I was told about my
unborn baby's diagnosis. As time went on, I was told I was sad as I was
"grieving my perfect baby". Once they were here, once we knew about
Wyatt's karyotype, once the twins were being kept alive in the NICU, I
was told by a social worker and every piece of literature that I was
handed that I was <i>grieving</i>. As I continued to write updates to my family, that is how I described it. Grieving. <i>Down syndrome was making me grieve</i>.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">I
learned more about DS when I got the babies home. I also learned all
about them, their individual personalities and got really into the swing
of being the parent of infant twins. It was then that I started to
figure out my emotions a little more. Ok, so DS wasn't what I
originally imagined for the ONE baby that I thought I was going to
conceive, but really, is that one little chromosome the source of all my
sadness? How about postpartum blues, post-surgical pain, recovery, or
multiple personal losses? In relation to my son's very real cardiac
condition and the two fragile lives for which I was terrified, how about
simple fear? In retrospect that sounds like the recipe for postpartum
depression, not my son's T21. My own husband, upon hearing the
"grieving" bit, argued with me. "It's not like anyone has actually
died!" he said to me, exasperated. His mother had passed away suddenly
in 2001 and it was this very real loss that he referenced now. However,
as told to us by that social worker that came to see us while we held
our tiny sparrow babies, we were grieving our son's Down syndrome
diagnosis. It was <i>only natural</i>, after all. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">It
took me quite some time to sort out my thoughts and feelings, probably
compounded by my early return to work and the challenges I faced because
of that. As the children grew and my son became more of a boy and less
of a baby, it became more evident how he was <i>just himself</i>, not
some list of potential or actual diagnosis, not some 'special' baby, not
the source of any familial discontent. You see, I was told that my
husband would leave me, that having a disabled, a "retarded" baby would
ruin our lives, our marriage. I was told by many "well meaning" people
that it was a good thing that "Down's children" were so loving as I
would have a forever child. I was told by every medical source, by
every appointment, by every medical professional that his extra
chromosome would be the cause of a life of sickness. I was told by a
nurse that it was a good thing he was a boy, imagine how tragic it would
be if he was a girl? I was consoled for his birth, often multiple
times a day.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">I wish I could wave the realization of
what I had attributed exactly to his extra chromosome off as a "D'oh!"
or "A-ha!" moment, but the reality is I was deeply ashamed at my
participation in the "love the baby, hate the disorder" mentality. How I
would love him "despite" his Down syndrome. How as a family we would
"overcome this obstacle". You can see that here in past posts, as my
writing changes and as I became more of the advocate that I am today.
Of course, I still had to really start to <a href="http://downwitdat.blogspot.ca/2013/07/picking-rocks.html" target="_blank">check my ableism at the door</a> and realize quite a few more things, but you can see where I actually started to get it.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">This
month, being Down syndrome Awareness month in the US, you would expect
me to be all over this like in years past. But, I'm not. There's a lot
of reasons here, ranging from current personal illness to personal
perspective. I'm not so keen on the "awareness" any more; the colours,
the gew-gaws, the posters. Instead I'm all about the education or the
advocacy part. Even the activism part. One could argue that I always
was more of an advocate than awareness raiser given the topics of most
of my posts in Octobers past... I may partially agree with you too.
However, as I've stated before, <a href="http://downwitdat.blogspot.ca/2013/03/make-world-down-syndrome-day-day-of.html" target="_blank">I'm done with <i>awareness</i></a>.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Instead,
I'm going to advocate. Hard. It may not be pretty, it will probably
seem to some like I'm shouting. It may seem to some that I am full of
hate and anger and all the things that I am accused of because I don't
write about unicorns and rainbows and flatly refuse to accept things as
gospel as they have been "always done this way". So be it. I will
continue to challenge the stereotypes and whatnot that many people
maintain as "fact" about Down syndrome. There will probably be
swearing. This is what I do. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">That particular social
worker is no longer telling new parents of children with T21 about
grieving the diagnosis. In fact, I've helped develop resources for new
parents. This blog is routinely passed out as a reference and I have
been personally thanked by a great many people. I am no longer
misplacing my emotions onto my son. He is no more or no less stellar
than any other child of mine. My desire from day one was to ensure that
nobody else would either, even if I couldn't process or understand it
properly. We are not unhappy.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">We're us. Full of
emotions and drama and all the little things that make up Team Logan.
Sometimes we're happy, sometimes we're sad. Sometimes we're silly and
giddy sometimes we get frustrated with one another, hell, even argue.
Sean and I worry about the things that other couples do, like money and
our health and whether or not we're getting enough sleep. The kids romp
around here together, spreading chaos and love in their wake... and
occasionally whacking each other with toys. Down syndrome is literally a
microscopic part of that, if it is really a part of that at all. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">We're not unhappy. We're real.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">I long for the day when no one is surprised at that statement.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">
</span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="https://www.facebook.com/DownSyndromeUprising" style="margin-left: auto; margin-right: auto;" target="_blank"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjr1_Q1reyk2z57Zcy9IsvyIP4x3OCRHxoAFwH9x3e5-a8pexwHxtdNe2lfSMAYDpPxgCVy7QTp0simJXpqkaCcoDUltovYo6uOvrvC_xQT1IbuYKAZnSeuuekoASs3xxQkwkqDsnd55w/s1600/1385632_734671426549942_826951315_n.jpg" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">[A banner for Down Syndrome Uprising, depicting the text "Down Syndrome Awareness Month, </span><br />
<span style="font-family: Verdana,sans-serif;">with the word acceptance stamped over the word awareness.] </span></td></tr>
</tbody></table>
</div>
<br />
<span style="font-family: Verdana,sans-serif;"><span style="font-family: Verdana,sans-serif;"><i>[Originally appeared on <a href="http://downwitdat.blogspot.com/">Down Wit Dat</a>] </i></span></span></div>
Psychojenichttp://www.blogger.com/profile/02936930614210195529noreply@blogger.com1tag:blogger.com,1999:blog-7460552419406225222.post-64547828948261089892013-10-03T19:00:00.000-04:002013-10-30T15:49:43.191-04:00When We Slip and Slide - A Lament<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7qYHoXViVzcpCwJL8HIS8Yq2OHXfubm4GqTpqx8P-UywtKHH1uMOOYHPUlFlqznOMliwAyJuZOdMTVqRM2qWxY7QkrWlu8As-Xf0ZZ1mgz_9vdqfPdcgMG1a1RkxiWEl8SKrGVuRWaPUV/s1600/IMG_7848.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7qYHoXViVzcpCwJL8HIS8Yq2OHXfubm4GqTpqx8P-UywtKHH1uMOOYHPUlFlqznOMliwAyJuZOdMTVqRM2qWxY7QkrWlu8As-Xf0ZZ1mgz_9vdqfPdcgMG1a1RkxiWEl8SKrGVuRWaPUV/s400/IMG_7848.jpg" width="266" /></a></div>
<div style="text-align: center;">
Nope. No actual water in this post.</div>
<br />
What <i>is</i> raising awareness? Is it asking people to realize that something exists? Is it factual information? Is it trying to wake people up to the reality around them? Or does it carry with it the connotation that there is something one should be aware of so that it doesn't sneak up on one, so that one is not, let's say, <i>affected</i> by a <i>condition</i>?<br />
<br />
Lately, I've been having an increasingly difficult time with seeing raising awareness as something that results in a purely positive outcome. It is no longer enough for me to say that we need to move on from awareness, that awareness is fine and all, but that <a href="http://utterlyunpublishedauthorsdaughter.blogspot.com/2013/03/why-i-do-what-we-do-and-then-some.html">we need to do more</a>. Now I have to go and question the whole idea of 'raising awareness' too. But then again, that's what I do: I can't just, for the sake of Frank and all of his penguin minions, accept things for what they are - good and pure and nice and not meant like <i>that</i>. </sarcasmfont><br />
<br />
I always have to dig, wonder, question, and reflect.<br />
<br />
Dammit, if I'm not just "full of hate" and "looking for things to be confrontational about." Ho hum. Yes, more sarcasm.<br />
<br />
But October is <b>Down Syndrome Awareness</b> month. There will be many people who will be especially vocal about Down syndrome, many bloggers who will be doing a blogging prompt called 31 for 21, which essentially means that they'll be writing a post to <i>raise awareness</i> about Down syndrome every day of the month of October. I wish I had that kind of blogging energy or the inspiration, but there just isn't enough coffee or wine in this world for me to blog every day (also, there may be too much good stuff to read to actually produce any stuff of my own). I own that. <a href="http://utterlyunpublishedauthorsdaughter.blogspot.com/2012/10/in-which-i-say-my-kids-frikken.html">Last year I managed one post</a>. This year I'm not even going to preface this post with a bunch of excuses. You all know I spend a lot of time just <strike>sitting</strike> <strike>chasing a wily toddler</strike> <strike>drinking</strike> <strike>thinking</strike> <strike>not cooking</strike> <strike>reading</strike> <strike>doing</strike> <strike>laundry</strike> <strike>resetting and degooifying the 'puter, the iPad, my phone, and the DVR</strike> living and being generally a big wet blanket, right?<br />
<br />
I'm excused and can just harp from the sidelines. Awesome.<br />
<br />
There will be many, many posts about Down syndrome. Countless cute, some not so cute, and maybe a few 'educational' photos. Lots of talk and stories, and the like. Plenty of dispelling of false or antiquated beliefs and completely wrong information. Some complaints. Many funny anecdotes and observations. Some facts, many should-be-but-maybe-not-exactly-are-facts, and perhaps a few beliefs and observations masquerading as facts. Still, lots of good, lots of community, and lots of love.<br />
<br />
Love is always nice. Isn't it just?<br />
<br />
But sometimes <strike>we</strike> I have to be contrary. Sometimes I have to embrace <a href="http://downwitdat.blogspot.com/2013/08/anger.html">my anger at the society</a> as a valuable tool, turn it into outrage, and challenge the very things I apparently should not be questioning. Because if things make us feel good, help us get by, or help to keep the boat from rocking, if they make us feel like "we're all in this together," they are beyond reproach. Huh? And questioning ideas written in stone as far as Down syndrome goes would just be mean and divisive and not beneficial to <i>the cause</i>.<br />
<br />
It could fuck with the kumbaya.<br />
<br />
Yeah. There'll be things in this month of blogging I want no part of. Because raising awareness - especially when this 'raising awareness' opens the door to pretty much anything one wishes to say about whatever that awareness is being raised about - does not necessarily promote meaningful inclusion, acceptance, or equal rights. Which, incidentally are<i> the</i> <i>cause</i> I'm interested in.<br />
<br />
Awareness does not necessarily lead to acceptance. Ideally it does, but ideally I'd also be blogging every day this month to a receptive audience, and always have the sun shine when I need to get across the Target parking lot with a toddler and a couple dozen pounds of Halloween candy. And ideally I'd have no desire to eat said candy. Ideally my kid would just stick with saying the "no" when she doesn't want to eat something and skip the grand display of 'here, this is how much I will not eat this crap and will instead place it in your lap, on the chair, and on the floor'. Ideally.<br />
<br />
But that's just not how stuff shakes out. Or doesn't. Egg stains, people. Egg stains.<br />
<br />
Sometimes raising awareness about Down syndrome becomes about a heightened sensitivity to that which all too easily makes a person with Ds<b> the Other</b>, and worse yet, people with Ds a unified, homogeneous <a href="http://tap.sagepub.com/content/22/5/541.abstract">group Other</a>. Awareness of a condition can lead to the idea that people with the condition need to be <i>handled</i> or <i>dealt with</i> in a certain way, differently from those without the condition, and potentially to the notion of differing expectations <i>of</i> the people with the condition. Raising awareness about Down syndrome, <i>the genetic condition</i>, can easily <b>chip away at the individuality</b> of a person with Down syndrome, <i>the people who have this genetic condition</i>, by drawing on generalizations and sometimes even stereotypes, and by linking the condition with a person's identity to such an extent that the person's other identities will always take the backseat, if the observer is even willing to entertain identities beyond 'a Down syndrome person' to begin with. In reality, any awareness about Down syndrome focusing on anything specific (I use this word while understanding that there is nothing purely specific to Trisomy 21) regarding Down syndrome will naturally work to Other people with Down syndrome for the unaffected observer. Awareness can erode individual personhood by zeroing in on perceived commonalities and differences from the 'general populace' in a way that <b>directly and simply links them to that triplicate of the 21st</b>, instead of making all of the necessary connections, such as the connections to and considerations of intellectual ability, gender, upbringing, nationality, daily routine, age, height, placement in the order of siblings, religion, genetic makeup, ethnicity, social circles, hair color, education, physical ability, disposition, and countless, <i>countless</i>, other outside factors. I say 'outside', because the importance we attach to any of these factors, including one's chromosome count, comes from the 'outside', the social constructs at work in our environment.<br />
<br />
My child does not enjoy music because she has Down syndrome. She enjoys music because she has existed since before her birth constantly listening to it, because I enjoy music, because she's been enrolled in music classes since she was 6 months old, because I sing to her, because her father sings to her, because her grandparents sing to her, because if I run out of avenues to entertain her I put on Baby Signing Time - the ones with all of the songs, because she sees that music makes the people around her happy and content and it's part of the celebration in our lives. Yes, the love of music is in her genes too, but she doesn't enjoy it because she has a third copy of the 21st chromosome.<br />
<br />
Notice the difference?<br />
<br />
Awareness can all too easily become about "Down syndrome things." It can slip from medical conditions <i>slightly</i> more prevalent in the population with Ds to complex behavioral patterns directly linked to the chromosome, insidiously enforcing Othering and, in the worst case scenario, allowing for medical professionals, far too quickly, to brush off valid medical issues that need attending to with "We often see this in Down syndrome," and simply resort to awareness instead of taking action (See what I'm doing here, making too simplistic a connection, a connection that kind of sounds like it fits and in a way it does, but when you really think about it hides behind it a much more intricate process?)<br />
<br />
Granted, this looking at perceived commonalities can make us parents of individuals with Ds feel safe and secure in shared experience, but is it really worth it? Do I need 'support' and 'community' more than I need for the world to accept my child as is, without a laundry list of 'Associated with Down Syndrome'? Do I crave similarity and things made simple more than I do the adventure and acceptance of the unknown that is the individual life I lead? In reality, Down syndrome is not even a syndrome. It's a genetic variant called Trisomy 21, not a group of <i>co-occurring symptoms</i>. The <i>symptoms</i> of Down syndrome are after all such horrifying inflictions as a single palmar crease, epicanthic folds, impaired intellect, and other life-threatening abnormalities, none of which are present, <i>ever</i>, in the general population, but are always, <i>always</i> present in Down syndrome. There really should be a pill, you know.<br />
<br />
Excuse me while I scream in frustration. Having to be <i>that</i> facetious and liberal with italics does that to a person, you know.<br />
<br />
(There would be a really cool gif right here of someone notorious screaming, right after rolling their eyes, if I were able to create one. Or understood what gifs are, really. Next century, I swear.)<br />
<br />
I like a nice community feeling, of course I do. Do I believe that having Down syndrome should naturally lead to membership in a community, a tribe? Is there anything so specific about Down syndrome that my child needs to have others in her life who also have Down syndrome, have a doll that has Down syndrome, or have her parents associate with other parents of children with Down syndrome? No. I do believe that there may come a time that my child will enjoy having friends who also have an intellectual disability, and/or will have a hard time keeping friends who do not have an intellectual disability, yes, but that doesn't have anything to do with Down syndrome specifically. There may also come a time that she will not want to play with some kids because they're not into playing 'zoo' or building with legos, and there might come a time she won't want to hang out with someone because all they speak about is the crappy music of the latest Justin Bieber, and, well, there's just more to life than tween pop.<br />
<br />
I'll let her find her own way.<br />
<br />
<i>Ideally</i>, I'd like to have her find it without having a certain type of <i>awareness</i> hanging over her head while she's trying to go up and talk to a kid, sign 'play', and then rip a ball right out of that kid's hands like that's what it means to share (true story, y'all). In the future, she might not always fit in because of how our society treats people with intellectual disabilities, but because of her Down syndrome? Only if we let it become synonymous with her identity.<br />
<br />
<i>Ideally</i>, I'd like to be a part of a larger disability community as an ally. A community which unites because of how the 'able' population in society view and treat their disabled fellow humans, not because I'm interested in romanticizing the extra chromosome in my daughter's cells. A community that doesn't commiserate and isn't heavy handed with honey (and fundraising) when in fact vinegar is called for.<br />
<br />
So while I celebrate my child in this month of October, it being her birthday month and all, and in all the other months, and while I have no problem whatsoever with Down syndrome in general, and my kid's Down syndrome which I wouldn't wish away in a million years, specifically, I wish we were part of a community that comes together as a resistance formed because of the segregation and oppression of those with Down syndrome, not a community that unwittingly sometimes contributes to the Othering of my child and <i>others like her</i> (See what I did there? That's how easily we slip and begin sliding...).<br />
<br />
Anyhoo, who's in for a little overthrowing? I'm free most Saturdays and come with wine.<br />
<br />
<i>This post appeared originally on <a href="http://utterlyunpublishedauthorsdaughter.blogspot.com/2013/10/when-we-slip-and-slide-lament.html">21+21+21=?</a></i>Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com1tag:blogger.com,1999:blog-7460552419406225222.post-15554451240179967702013-10-02T13:08:00.000-04:002013-10-18T13:09:18.563-04:00The Space BetweenWhen the Dr. called to tell me that my fetus had Trisomy 21, I remember the moment quite clearly. In that moment, before I cried or raged, I felt nothing. Not a numb kind of nothing. The kind of nothing that comes between breaths. A crystallized feeling where you simply do not know at any level what will come next. A moment where you have no idea what to even image. I have never ever felt this way in my life. I always knew where to place my foot so to speak. But in that moment, there was no script, no map, no path. I felt that my foot was hovering over an abyss of unknowing. It was not a negative space or a positive space. It was a nothing space. The space in between.<br />
<br />
You see there was no script for this moment. Bourdieu would say that my doxa did not include this scenario. Butler would say that I was facing that misstep between the construct and the experience. I simply remember that I hardly dared to breath. That my skin felt inside out. That I was walking wrapped in cotton balls. That my words would shatter against the air. That touch would burn.<br />
<br />
When I look back at the posts I wrote about that time, I realized that I was constructing as I went along. Trying very hard to find the words that would build some feeling about what it meant to be carrying a fetus with Trisomy 21. To bear that fetus as a baby into the world. To raise a child with Trisomy 21. I didn't know. I knew one story, and I had rejected it before Jude was even an imagining.<br />
<br />
Because I had company in those early days it was very hard for me to construct a story. My mom had started to read "Expecting Adam" but I wasn't ready for much. I tentatively did some Internet searches. I read one or two stories but I couldn't fit into them. They were too big or too small. So I existed in the space between. I relished my friends saying "It's okay. It's good." Early on I did not hear that Jude was a special blessing, or any apologies for something that did not need to be apologized for. I knew those things would come because of the stories I had read. But for some reason, on that first day, they were not said.<br />
<br />
Eventually I started to read, and I tried to fit on the stories. I told H that I was grieving the child I thought I was having, and he scoffed "What the hell does that mean? How is Jude NOT the child you were supposed to have?" I pretended that Jude was a miracle sent from God. I was being tested. God was giving me something that would be hard and beautiful. I did not need H to challenge that story. I could barely stomach it in my own head. I was so desperate to find a story that would fit. I was having a hard time writing my story because it was unknown to me. So foreign that it defied telling, one could say.<br />
<br />
You see I didn't KNOW anyone with an intellectual disability much less someone with Down syndrome. I had never really imagined myself with a child who had Down syndrome. I had not prepared for this script. Strangely enough I knew how to feel if this child had been dead. I had gone to that dark place, and I knew what one should feel in that circumstance. But this one? I was lost, fumbling for meaning, for words, for language. All because I didn't have the encounters to know. To make human something that at this point was only an abstraction. A set of marks on a piece of white paper. There was no baby to make sense of what I was being told. Only a rather fuzzy ultrasound picture.<br />
<br />
Before we moved to Athens, I wrote a thesis on how humans use stories, memoirs, to make meaning of their past in ways that reconcile that past to the present, to the future. I had chosen an odd memoir called <i>Keep Sweet</i> that defied many of the conventions of the way deconversion memoirs are framed. Debbie Palmer, a former member of the Fundamentalist Church of Jesus Christ of Latter Day Saints, seemed to be fumbling. She was in a place where, I argued, where she could see those gaps between what we know and what we come to find out. For the first time, I truly understood that moment. She was in the space between, and she was struggling to fit a script into this experience. She was grasping to make something of this nothing. It is like sculpting with sand and it does make for a pat kind of story.<br />
<br />
<span style="font-family: Trebuchet MS, sans-serif;">Now that I am a bit further into this journey, with a baby sleeping on my lap, in a world where I think about Down syndrome every day but not about Jude having Down syndrome everyday, I realize that my experience is vital for a couple of reasons. Reasons that have often made me feel like I am a bit on the outside of a broader community. Because here's the thing, if people with Ds, and ID were really included then there would be a script. I'm talking about an inclusion that recognizes the humanness of all people. An inclusion where we would encounter a person with Ds on our daily walk, in the store, on the bus, in our class room. A world where we would engage and interact and develop relationships. If I, in my 41 years can only recall meeting and talking to someone with Down syndrome twice in my life then it does speak to how much further we have to go. And it's not just meeting people with Ds in the flesh, it's the fact that I don't read about people with Ds in academic papers. That I don't see their ideas in the boarder media. I don't see their art being talked about in art circles. When I read or hear about people with Ds, it is only in isolated places where I go only because Jude had Ds.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">If the social world comes to reflect that the world is filled with difference, difference in abilities, colors, genders, etc than we have a richer script from which to draw. If we see kids with Ds on our TVs (yes, I know Glee but I'm talking about more than one show), if we see them not just as special additions but as fully included in the experience of life, we offer more. We side step the need for grief because having Ds could be just another variation in the vastness of experience. We need more scripts, more ways to understand that moment in between. Our stories are going to shape how another woman, like me, experiences that in between. I'd like to take her out of that space faster, so fast that it seems...well, typical.</span><br />
<br />Anonymoushttp://www.blogger.com/profile/09934296564253625199noreply@blogger.com0tag:blogger.com,1999:blog-7460552419406225222.post-8254023254345357772013-08-30T05:57:00.000-04:002013-10-29T12:08:11.055-04:00Anger<div dir="ltr" style="text-align: left;" trbidi="on">
<div dir="ltr" style="text-align: left;" trbidi="on">
<div style="text-align: center;">
<br />
<span style="font-family: Verdana,sans-serif;"><i>"We need to call out the deaths of our people as hate crimes, not
freeze-frame our bodies in sparkle-filled glamour shots that make us so
super-humanly other."</i></span></div>
<div style="text-align: center;">
<span style="font-family: Verdana,sans-serif;">--<a href="http://thatautisticthatnewtownforgot.blogspot.ca/2013/07/tokenism-autism-style-warning-to-parent.html" target="_blank">An Anonymous Newtown Autistic</a></span></div>
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">I'm angry.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Not
in an uncontrolled wildfire of rage that would consume my every waking
moment kind of angry... My real world life exists somewhere between a
painful sleep deprived haze and caffeine fueled tangentiality. I don't
have the time (or the energy) for such wild abandon.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">But I am angry.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">And that is a good thing.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Our
culture, ever ready with a label, likens anger to unproductivity. It
is the work of evil, it only causes harm. Most people don't seem to
consider anger as a tool, as a medium for change. But it can be. In my
world, we call it constructive anger. It has a large role in
cognitive-behavioural therapy and treatment for things such as PTSD. An
event happens, you react with anger, a normal human emotion. Instead
of being consumed by it however, you calmly evaluate why the event
angered you. Then you use the energy of your anger to motivate you to
change the situation that made you angry in the first place.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Or, in the words of Alyssa at <a href="http://yesthattoo.blogspot.fi/2013/08/anger-is-also-tool.html?spref=tw" target="_blank">Yes That Too</a>:</span><br />
<blockquote class="tr_bq">
<span style="font-family: Verdana,sans-serif;"><i>"People
talk about anger like it doesn't accomplish anything. That's just not
true. Anger can be fuel to provide energy for activism. Anger can be
how people <b>realize</b> something is wrong, that something needs to be fixed."</i></span></blockquote>
<span style="font-family: Verdana,sans-serif;">Anger is a very powerful force. There is a lot to be angry about these days. There is an awful lot that needs fixing. </span><br />
<span style="font-family: Verdana,sans-serif;"> </span><br />
<span style="font-family: Verdana,sans-serif;">This week saw <a href="http://news.nationalpost.com/2013/08/20/letter-telling-ontario-family-to-euthanize-autistic-son-not-a-hate-crime-police/" target="_blank">this hateful letter</a>
delivered to a home that is just over an hour's drive from mine. A
letter, so full of ableist poison (and almost illiterate ignorance) that
it made me physically sick to read. Naturally, people reacted in
disbelief. How could this happen? How could this happen <i>here</i>? This is obviously a hoax, right? And so on... Although technically <a href="http://www.drps.ca/internet_explorer/whatsnew/whatsnew_view.asp?ID=26406" target="_blank">"not a hate crime"</a> (as no threats of physical harm were made), these things happen to those with special needs all the time. <a href="http://www.kktv.com/home/headlines/NEIGHBORS-WANT-FAMILYS-HANDICAP-RAMP-REMOVED-218930251.html" target="_blank">This family in Colorado</a>
is fighting with their neighbours who want their wheelchair ramp
removed from the front of their home for fear it will lower property
values. <a href="http://www.portlandoregon.gov/oehr/article/458971" target="_blank">This flyer</a> was put up in the Portland area, presumably to shame those with "fake" disabilities. <a href="http://www.lifewithdogs.tv/2013/08/veteran-kicked-off-boardwalk-for-having-a-service-dog/" target="_blank">This veteran</a>
was kicked off the boardwalk in New Jersey and issued a summons for his
service dog. While on the subject of service dogs alone, <a href="http://www.nypost.com/p/news/local/they_re_licked_H9js6NfMXjSAbkkCYu97NI" target="_blank">this story</a> was published in the New York Post, lamenting "fake" service dogs and as <a href="http://www.stephenkuusisto.com/" title="">Stephen Kuusisto</a> put it, is <a href="http://www.planet-of-the-blind.com/2013/08/whats-on-the-menu-the-manhattan-service-dog-blues.html" target="_blank">"...<span style="letter-spacing: 0.0px;">one of the most willfully underhanded pieces about disability I’ve ever seen in a newspaper."</span></a></span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">These stories aren't random and isolated incidents. They, and many more like them, have occurred <i>this month</i>. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Ableism, whether you wish to acknowledge it or not, is running wild in the Western world.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">I
shouldn't have to mention how society views people like my son Wyatt
and his extra chromosome. Still disregarded out of hand, people with
developmental disabilities like Down syndrome are still the butt of
jokes in popular culture. Children with intellectual disabilities are
still <a href="http://www.lisamorguess.com/2013/08/22/finn-2/" target="_blank">denied access to education</a>
that is mandated by law; in 2013 it is astounding that parents are
still having to fight when research has shown over and over that <a href="http://www.copaa.org/blogpost/895540/168909/Look-at-the-facts--All-Students-Learn-Better-Side-by-Side" target="_blank">performance of all students is improved</a> in an inclusive setting. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">The
stereotypes abound with DS, many of which are perpetuated by the
medical community that we look to for advice and information. Also sad
is the fact that many stereotypes are perpetuated by those that call
themselves advocates. <a href="http://downwitdat.blogspot.ca/2013/08/balance.html" target="_blank">I've stated before</a>, anything that describes my son as anything other than human is wrong. Period.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">A
big bone of contention are the faddish inspirational memes/pictures
(A.K.A. inspira-porn) which
are pumped out at an alarming rate by many organizations. I was told
once, by a group that produce and condone many of those images that they
were doing such to be <i>positive</i>.
That new parents (and --- let's get real
here --- those considering pregnancy termination) needed oodles of positivity. That the way to make life better for
kids like my son, was to surround everyone in <i>positivity </i>because it all boils down to a matter of<i> marketing.</i></span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">I guess it's <i>bad marketing</i> that forces young people with
disabilities <a href="http://www.texastribune.org/2010/12/20/lawsuit-disabled-wrongfully-housed-nursing-homes/" target="_blank">to be housed in nursing homes</a>
in some places due to lack of community supports. It must be marketing
that stands in the way of achieving inclusive schooling and accessible
lives. <i>Marketing</i> is what allows those that run social media
sites such as Facebook and Twitter to not even bat an eye when new
groups or events are created to mock those with special needs. Even
better was being told by some of the same people that the Down syndrome
community didn't want to appear "divisive" much "like Afro-Americans
[sic] or women".</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">People with Down syndrome come in all
sizes, shapes, colours, cultures, abilities and ages. Just like
everybody else. Many of the memes and slogans simply perpetuate the
"otherness", by employing <a href="http://downwitdat.blogspot.ca/2013/08/balance.html" target="_blank">pedestal ableism</a> and by alienating those with DS from the larger
disability community. In the words of Lawrence Carter-Long, Public Affairs Specialist at the <a class="profileLink" data-hovercard="/ajax/hovercard/page.php?id=131414496898167" href="https://www.facebook.com/NCDgov?ref=br_rs">National Council on Disability</a>:</span><br />
<blockquote>
<span style="font-family: Verdana,sans-serif;"><i>"Still
think "the only disability in life is a bad attitude?" Try ordering
from a menu with a blindfold on, smiling your way up inaccessible stairs
or reading non-existent captions on a YouTube video. Don't like my
"bad" attitude? Then provide equal access. You'll be amazed at how much
my mood improves. Oh... and while you're at it, please check your
unexamined privilege at the door. Thank you. Have a nice day!"</i></span></blockquote>
<span style="font-family: Verdana,sans-serif;">There
is real danger with these memes. In the act of creating this image of
perfectly posed happiness, it doesn't allow for real life, for real
emotions. If happiness and docile complacency are the norm, it must
have been a complete shock to many when <a href="http://articles.washingtonpost.com/2013-08-02/local/41002259_1_morris-and-talbert-jim-talbert-jenny-hatch" target="_blank">Jenny</a>,
an adult with Down syndrome, fought and won the right to choose where
she wanted to live. Generalizations and stereotypes set up unrealistic
scenarios and are damaging, no matter how well meaning. Pedestal
ableism is still ableism. Those cute little children will grow up one
day and want to have sex and get jobs and do all the things that all
adults want to do. Continuing to infantilize adults with DS, to pat
people on the head and endow supernatural abilities to chromosomes will
not assist with the completion of these goals. Continuing to perpetuate
the stereotypes that other disability advocates have been breaking down
for decades is not surprisingly, making people angry. From <a href="http://thatautisticthatnewtownforgot.blogspot.com/2013/07/tokenism-autism-style-warning-to-parent.html" itemprop="url" rel="bookmark">Tokenism, Autism-style: A warning to parent-allies too eager to showcase our extraordinary ability:</a></span> <br />
<blockquote class="tr_bq">
<span style="font-family: Verdana,sans-serif;"><i>"No, fucking no, we are not myths! We are not some mythical other! We are humans."</i></span></blockquote>
<span style="font-family: Verdana,sans-serif;">Essentially,
to keep from being seen as "angry", or running the risk of
challenging any actual ableism, real life civil rights are not on the
menu with these organizations and their "inspirational" memes. Instead,
in the name of marketing, there are eleventy billion soft-focus
pictures out there
that are intended to make Down syndrome more <i>palatable</i> to people. To be like Wonder bread; soft, not much to chew, devoid of any nutritional content and bleached very white.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">I
was also a little shocked to learn that I am not supposed to have a
voice. My son with Down syndrome is only two years old and I don't have
the "experience" nor have I paid my dues. My choosing to speak up
regardless, makes me an "angry" person (which one could translate as
"uppity", as I obviously don't know my place). I too get patted on the
head by some, told that in time "I'll understand" why the community
chooses to operate this way. I'm almost 42, have been a mother for 7
years, am the mother of twins and have been a nurse for over 17 years.
When exactly will that be? How old does my son have to be before I can
call shenanigans on the unjust practices directed at him? I'm not
arrogant enough to presume what my son thinks and perceives or know
exactly the man that he will grow into. I don't know that about my
other two kids either. I will do my damndest however to ensure that he
gets the education he deserves and that he gets to make his own
decisions, whether my CV has the "correct" amount of experience or not. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">That
will be done with constructive anger. And humour... but anger will be
the fire that stokes the boilers into action. There is a lot of work to
be done. I don't think that it is too much to ask that September
contains less stories of hate and ignorance. Or that the stories that
feature disability in every Lifestyle section of every mainstream
publication not be written by the able-bodied or parents that haven't
fully accepted their children with disabilities. I don't think that it
is too much to ask that equal access and inclusive education be
automatically available. I don't think that it is too much to ask that
you stop labelling my kid, stop putting him in a little box that says
"happy moppet" on the outside and expecting him to act a certain way,
just because you believe it makes it easier for people to accept him.
The reality is, he as a real, live human being with fully dimensional
thoughts and feelings... who is just as full of shit as the rest of us.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">I will leave you with the words of <a href="http://www.disabilityhistory.org/dwa/edge/curriculum/cult_prof_wade.htm" target="_blank">Cheryl Marie Wade</a>, a lady that I only came across a few years ago when I started reading disability history for my <a href="http://downwitdat.blogspot.ca/2013/07/a-brief-history-of-down-syndrome-part-1.html" target="_blank"><i>A Brief History...</i></a>
series. She passed away last week. She was seen by some as "angry"
too, which is probably why her death didn't make the papers.</span><br />
<blockquote class="tr_bq">
<blockquote class="tr_bq">
<blockquote class="tr_bq">
<span style="font-family: Verdana,sans-serif;">"We ain't smilin' inspiration for the latest worthy cause</span><br />
<span style="font-family: Verdana,sans-serif;">But generation after generation changing the laws</span><br />
<span style="font-family: Verdana,sans-serif;">Parents fighting for their children.</span><br />
<span style="font-family: Verdana,sans-serif;">Kids fighting for their dreams.</span><br />
<span style="font-family: Verdana,sans-serif;">Maybe you've be deprived,</span><br />
<span style="font-family: Verdana,sans-serif;">Maybe all you know is Jerry's kids--</span><br />
<span style="font-family: Verdana,sans-serif;">Those doom drenched poster children hauled out</span><br />
<span style="font-family: Verdana,sans-serif;">once each year to wring your charitable pockets dry.</span><br />
<span style="font-family: Verdana,sans-serif;">The tragic--<i>but brave</i>, victim.</span><br />
<span style="font-family: Verdana,sans-serif;">We are also Jerry's orphans,</span><br />
<span style="font-family: Verdana,sans-serif;">Proud freedom fighters,</span><br />
<span style="font-family: Verdana,sans-serif;">Takin' to the streets,</span><br />
<span style="font-family: Verdana,sans-serif;">Takin' to the stages!</span><br />
<span style="font-family: Verdana,sans-serif;">Raising speech-impaired voices in celebration of who we are--</span><br />
<span style="font-family: Verdana,sans-serif;">Radical. True. Passing the word..."</span></blockquote>
</blockquote>
</blockquote>
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">The
only way that any of this is going to get done is through action.
Through anger. Through outrage. Through calling out the unjust and
affecting change where needed. It's going to take sweat, tears, rivers
of determination and some serious balls. Not five minutes in Photoshop.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">I'm angry.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">It's a damned good thing.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">
</span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://www.flickr.com/photos/psychojenic/311985268/" style="margin-left: auto; margin-right: auto;" title="Sparks II by PsychoJenic, on Flickr"><img alt="Sparks II" height="400" src="http://farm1.staticflickr.com/103/311985268_128207fe53.jpg" width="300" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://www.flickr.com/photos/psychojenic/311985268" target="_blank">Fire, good.</a></span></td></tr>
</tbody></table>
</div>
<span style="font-family: Verdana,sans-serif;"><span style="font-family: Verdana,sans-serif;"><i>[Originally appeared on <a href="http://downwitdat.blogspot.com/">Down Wit Dat</a>] </i></span></span></div>
Psychojenichttp://www.blogger.com/profile/02936930614210195529noreply@blogger.com3tag:blogger.com,1999:blog-7460552419406225222.post-36781865851293253052013-08-03T03:10:00.002-04:002013-08-03T03:10:26.699-04:00The Problem With Down Syndrome: Part 2<div style="color: #333333; font-family: 'Open Sans', sans-serif; font-size: 13px; line-height: 19px;">
<em>I just want a healthy baby. </em>I think every single prospective parent must utter these words at some point, but it is worth questioning.</div>
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One "common sense", yet false, assumption is that Down syndrome itself is a state of poor health. Then, it goes without saying that the ideal state of affairs would be to get rid of Down syndrome. This is the logic I hear time and time again in news articles, comments, off hand remarks from strangers.</div>
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It makes sense, right? Down syndrome comes from the presence of an extra chromosome. That extra chromosome causes the body to malfunction, right? Therefore, Down syndrome IS poor health. So therefore, our goal should be to make sure no one is born with Down syndrome. Wait. Can we slow down?</div>
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Discussing medical risk solely in terms of Down syndrome reduces a complex individual into a one-dimensional picture painted with a single color called "extra chromosome". Most parents who get a Down syndrome diagnosis find themselves sinking into a black hole of terrifying statistics. I don't wish to minimize these, but it isn't the whole picture.</div>
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The third chromosome isn't an unsightly ink blotch of risk on an otherwise pristine piece of paper. We all carry risk by virtue of living. We all carry higher risks by belonging to certain definable groups. <a data-mce-href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001554/" href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001554/" style="color: #3c2bb6;" target="_blank">Sickle cell anemia</a>. <a data-mce-href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002390/" href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002390/" style="color: #3c2bb6;" target="_blank">Tay Sachs</a>. <a data-mce-href="http://www.cff.org/AboutCF/Faqs/#Who_gets_cystic_fibrosis?" href="http://www.cff.org/AboutCF/Faqs/#Who_gets_cystic_fibrosis?" style="color: #3c2bb6;" target="_blank">Cystic Fibrosis</a>. <a data-mce-href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001613/" href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001613/" style="color: #3c2bb6;" target="_blank">Thalassemia</a>. <a data-mce-href="http://www.mayoclinic.com/health/familial-mediterranean-fever/DS00766" href="http://www.mayoclinic.com/health/familial-mediterranean-fever/DS00766" style="color: #3c2bb6;" target="_blank">Familial Mediterranean fever</a>. It took me ten minutes of an internet search to learn about this handful of medical conditions, all of which are more prevalent in certain genetically related groups. I'd guess that there are many genetic bases for disease and illness, science just hasn't found the common thread yet.</div>
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Also, why have I never read a single media story mentioning that living with Ds isn't solely about medical risk? What about better prognosis after <a data-mce-href="http://www.webmd.com/parenting/news/20050201/down-syndrome-mutation-helps-leukemia-survival" href="http://www.webmd.com/parenting/news/20050201/down-syndrome-mutation-helps-leukemia-survival" style="color: #3c2bb6;">leukemia</a> and <a data-mce-href="http://ndsccenter.org/resources/general-information/ds-news-articles/infantile-spasms-in-children-with-down-syndrome/" href="http://ndsccenter.org/resources/general-information/ds-news-articles/infantile-spasms-in-children-with-down-syndrome/" style="color: #3c2bb6;">seizure disorders</a>, less hardening of the <a data-mce-href="http://www.familypracticenews.com/news/more-top-news/single-view/risk-of-atherosclerosis-is-low-in-down-syndrome/7d98da7ac0.html" href="http://www.familypracticenews.com/news/more-top-news/single-view/risk-of-atherosclerosis-is-low-in-down-syndrome/7d98da7ac0.html" style="color: #3c2bb6;">arteries</a>, <a data-mce-href="http://en.wikipedia.org/wiki/Diabetic_retinopathy#cite_note-14" href="http://en.wikipedia.org/wiki/Diabetic_retinopathy#cite_note-14" style="color: #3c2bb6;">diabetic blindness</a>, fewer <a data-mce-href="http://www.sciencedaily.com/releases/2009/05/090520140359.htm" href="http://www.sciencedaily.com/releases/2009/05/090520140359.htm" style="color: #3c2bb6;">solid tumor cancers</a>, fewer <a data-mce-href="http://www.ndss.org/Resources/Health-Care/Associated-Conditions/Dental-Issues-Down-Syndrome/" href="http://www.ndss.org/Resources/Health-Care/Associated-Conditions/Dental-Issues-Down-Syndrome/" style="color: #3c2bb6;">cavities</a>, and lower likelihood of both <a data-mce-href="http://www.cerebralpalsyandotherdisorders.com/cerebral-palsy-downssyndrome.html" href="http://www.cerebralpalsyandotherdisorders.com/cerebral-palsy-downssyndrome.html" style="color: #3c2bb6;">cerebral palsy</a> and <a data-mce-href="http://www.down-syndrome.org/reports/31/" href="http://www.down-syndrome.org/reports/31/" style="color: #3c2bb6;">high blood pressure</a>? Genes do not act in isolation, and I wish there were more balanced attention paid to the fact that Ds is not a disease unto itself, but a genetic existence. Unusual, sure, but not a disease.</div>
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I also wonder what effect the diagnosis in and of itself has on rates of detection of health "problems". When we got our diagnosis, we went through months of medical appointments to rule out statistically likely medical issues. The results? We have "discovered" some, but are choosing medical intervention for only hypothyroidism. While the reasons we did all those tests were based on a real risk, I also wonder how much is confirmed simply by looking. If I had subjected my other children to the same battery of medical screenings and tests, what would we have found?</div>
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Again, I'm don't want to minimize the real health concerns, and I think we need <em>more</em> understanding of what Down syndrome is, not less. There are clearly differences relating to having three copies of a chromosome. Still, the mainstream image of Down syndrome <em>being</em> a form of poor health in a way fundamentally different than a person with typical chromosomes doesn't feel right.</div>
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Lastly, I sense a real stigma permeating the discussion of medical risk and disease. Now, I don't have a child with a significant medical issue. (This of course, like for any human being, could change.) However, when I read the comments in these articles talking about the new research, it almost feels as if the assumption is that an person gets leukemia, infantile spasms, Alzheimer's, etc., because of his inherently <em>defective</em> genetics. To be sure, a significant risk factor could be Down syndrome, but the exact hows and whys that an individual develops a disease or condition is very hard to know. There is no health condition that is unique to Down syndrome, after all. My real concern: Doesn't this stigma contribute to discrimination against people with Down syndrome overall?</div>
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I just can't accept it as simple common sense that Down syndrome is unhealthy. I just can't lay all of that on one chromosome. Risk and statistics are very complicated, and tell us mostly about large groups of people. It is harder with a single individual. Just ask the mother who had a baby with Down syndrome after receiving 1 in 1000 odds after screening. Clearly, she had a 100% chance of having that baby, but simply did not know every single factor that may have calculated into that equation of chance.</div>
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I'm saddened by the general public's quick leap into assuming that the ideal application for this new research is to "cure" or "prevent" Down syndrome itself, rather than treat a specific disease to enhance an individual's comfort and quality of life. No one contemplates getting rid of an entire group of people in the name of better health, except, it seems, when it comes to genetic differences such as Down syndrome. I know that the research is probably not intended as such, but why is the rest of the world so quick to go there?</div>
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<br /></div>
<div style="color: #333333; font-family: 'Open Sans', sans-serif; font-size: 13px; line-height: 19px;">
My son with all 47 chromosomes is here to stay. Let's slow down and try to understand what science has to offer, before we make any assumptions. Down syndrome is part of genetic diversity. It has been in existence for as long as humans have, and will continue to be. Perhaps we should stop thinking that people with Down syndrome are surviving <em>despite</em> their 47 chromosomes, but <em>with</em> their 47 chromosomes.</div>
<div style="color: #333333; font-family: 'Open Sans', sans-serif; font-size: 13px; line-height: 19px;">
<span style="text-align: center;"><br /></span></div>
<div style="color: #333333; font-family: 'Open Sans', sans-serif; font-size: 13px; line-height: 19px;">
<span style="text-align: center;">Next up: Intellectual Disability*</span></div>
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* This, of course, assumes that I'll be able to keep my focus on this one topic of thought. Wish me luck, as it is not a given.</div>
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********************<br />Edited to add: It has become apparent to me that I haven't addressed the topic of stigma against illness and disease enough. I do not believe there is a hierarchy of human worth based on health status. In fact, I believe that this tendency to define Down syndrome in and of itself as a unhealthy also contributes to sometimes poor medical care for those with complex medical needs. I can't list the number of times I have heard parents express that doctors were less willing to intervene in serious medical situations because of their belief that "Down syndrome is just like that". What I truly want is for each individual to be treated as a unique case. Down syndrome must be accounted for when assessing medical needs, to be sure, but it can't be the entire picture. ~jl</div>
Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7460552419406225222.post-49120425005027810052013-07-29T22:28:00.000-04:002013-10-26T21:08:21.357-04:00Believe and Live<br />
<span style="font-family: Times, Times New Roman, serif;">I love <a href="http://www.huffingtonpost.com/2013/07/22/direct-action-disability-rights_n_3636511.html">this article</a> by Anita Cameron about different kinds of disability advocacy tools. She argues that nothing will ever get done without direct action. "Right on, right on," I say. I believe that too. Nice is not enough. But still, taking direct action implies we all know, <i>and agree on</i>, just exactly what we are fighting for. Right?</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">So what is it? What am I doing here and elsewhere?</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">For me it all comes down to acceptance, meaningful inclusion, and equality.</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">None are currently a complete reality, but they all are the logical next step for humanity which evolves and progresses (and thus isn't on a crash course with some sort of an apocalypse). But most people don't seem to know that.</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">We need vision.</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">So much about all of this is vision. So much about this is expecting more than we think will happen, faster than we think anything will happen. It is expecting a large scale societal change and behaving as if this large scale change is imminent. Practically already here. Happening as I shout.</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">It is about not getting discouraged and just doing what's best for my specific kid or myself, right here and right now.</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">I don't want to only focus on the haters and the trolls, I want us to sway those who lazily vacillate, those who have good intentions, and those who just don't know any better. I want to scream our vision the loudest. To make it the all-encompassing truth, the reality, the now.</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">I want to kill the positive stereotypes and the well-meaning misunderstandings about a 'mystical' chromosome. I want to stop allowing for <a href="http://utterlyunpublishedauthorsdaughter.blogspot.fi/2013/07/a-jerk-with-halo-and-some-shabby-wings.html">reductionism for inspiration's sake</a> because it is the lesser of two evils.</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">In my vision the evil trolls will be recognized as the minority they are. Those closeted sociopaths. I'm not so worried about that anonymous, faceless person who spews his or her vitriol in an online comment to an article about a person with a disability. I'm more worried about my kid's future teacher, her friend's mother, my neighbor, and that guy who packs my groceries. I worry that they won't really believe in inclusion because they haven't experienced it, that they won't see it as the most logical thing to do because no one's told them that it is.</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">I don't worry so much about hate as I do lazy ignorance. I don't worry so much about someone blowing off steam, than I do those minds who've never even really thought about people with Down syndrome or other disabilities as fellow human beings, because they're so used to understanding 'able is normal' as a fundamental fact, just because <a href="http://dsq-sds.org/article/view/1665/1606">it gets insidiously reinforced</a> at every turn. I worry about those who perceive people who are disabled as inspirational, marginal, apart, similar amongst themselves, and here on earth for purposes external to themselves, purposes other than living their individual lives. A <a href="http://utterlyunpublishedauthorsdaughter.blogspot.fi/2013/04/what-if.html">perceived unity</a> of the experience of disability concerns me.</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">Most people follow, they adapt, they go with the flow. We, as advocates, need to define the current.</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">We have an audience.</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">We can set targets all we want and meet them, but unless we actively work to redefine the rhetoric - the way most people view disability and especially intellectual disability, language and all - we'll always have new targets, new ways of oppression, and the fight will never end. We can't just tackle the immediate, we need to reconstruct the foundation. Sometimes that involves peering inwards too, at our own world view and thinking. It has very much meant that for me, at least.</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">There is a lot of discussion about being united and unified in our efforts, but how can we? We don't agree. For me there are things that simply cannot coexist if an <a href="http://utterlyunpublishedauthorsdaughter.blogspot.fi/2013/07/about-grief.html">ableist way of thinking</a> is to be dismantled.</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">I can't be all "accept my kid as is, but in case you do figure out how to suck that extra chromosome right out of her very cells, please call us, we're interested." You can't say "my child deserves to be included in everything her peers are, but you know, if she gets bullied or we feel she's getting frustrated with learning math, relocate her into a nice self-contained location, <i>for her own sake</i>." We can never say "achievements and normalcy are arbitrary social constructs and we need to understand that, but hey, more therapies to help my struggling child the better, before she falls too far behind her peers."</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">I will have to constantly examine my own thinking, my own language. Will it be my child who is frustrated, unhappy, struggling, or will it be me? Am I fixing my child for the world instead of the world for my child? When did a life of achievements become <i>the</i> life?</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">We have to turn the tables.</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">We have to say "There is no discussion. Inclusion has to be a fact as it is a practice that benefits all. Inclusion is the <i>natural state</i> of things. Through inclusion everyone's experience, everyone's life will be just that much more <i>normal </i>(pun very much intended), and everyone will be accepted as a member of the human race and society, with whatever that entails, attempts at peaceful coexistence and conditional love."</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">We can't try to <i>sell</i> or <i>market</i> disability: "please accept my kid, she is not just a useless eater, she can <i>do</i> all of these things." Doing things isn't a precursor to humanity, being human is. We can't mystify or romanticize the chromosome and ascribe to it some specific, sometimes even supernatural-sounding traits or abilities: "Looksee here, that chromosome's special, if we eradicate it, we eradicate our pathway to the mysteries of cancer treatments or Alzheimer's." Three copies of the 21st chromosome are a part of 6 million people worldwide, and that should be enough to warrant general scientific interest. Or at least I'm going to act as if it is.</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">I will believe it and live it.</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;">Disability is natural. Down syndrome is natural. It's about time everyone knew.</span><br />
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<span style="font-family: Times, Times New Roman, serif;"><i>This post originally appeared on <a href="http://utterlyunpublishedauthorsdaughter.blogspot.com/2013/07/believe-and-live.html">21+21+21=?</a></i> </span><br />
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Extranjerahttp://www.blogger.com/profile/13972708570414496825noreply@blogger.com0tag:blogger.com,1999:blog-7460552419406225222.post-90990848990438508842013-07-26T09:06:00.000-04:002014-02-25T02:10:10.887-05:00A Brief History of Down syndrome - Part 7: Abused, Neglected, Forgotten<div dir="ltr" style="text-align: left;" trbidi="on">
<div dir="ltr" style="text-align: left;" trbidi="on">
<div class="tr_bq" style="text-align: center;">
<br />
<span style="font-family: Verdana,sans-serif;"><b><i>"Euthanasia through neglect..." </i></b></span></div>
<div style="text-align: center;">
<span style="font-family: Verdana,sans-serif;">– Albert Deutsch </span></div>
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">As
World War II raged on, the number of admissions to institutions
continued to increase. The amount of workers in the institutions
continued to decrease however, as more men were being drafted every day
for the war effort. Overcrowding quickly became the norm <a href="http://downwitdat.blogspot.ca/2012/10/a-brief-history-of-down-syndrome-part-5.html" target="_blank">once again</a>,
with patients in hallways and even sharing beds. Without privacy,
without comfort, without possessions, without support, patients were
completely dehumanized and ready targets for abuse. Conscientious
objectors, those citizens who refused to fight in the war for ethical
reasons, were readily employed by the institutions to help fill the
ranks. It is these people that began to expose the horrors of mass
violence and neglect.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://content.dnalc.org/content/c12/12319/12319.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://content.dnalc.org/content/c12/12319/12319.jpg" height="320" width="244" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Patient record from Letchworth Villiage.</span><br />
<span style="font-family: Verdana,sans-serif;">Photo courtesy of <a href="http://www.dnalc.org/" target="_blank">The DNA Learning Center</a></span></td></tr>
</tbody></table>
<span style="font-family: Verdana,sans-serif;">Those with disabilities were viewed as sick within a
system that was
highly medicalized; each institution was run by physicians and staffed
by nurses. In the US, "state hospitals" housed the mentally ill while
"state schools" held
those with intellectual disabilities. Areas within both were referred
to in terms of "wards" or nursing units. "Patients" had "charts" and
attended "therapy" or "programs". People were referred to by their
disabilities, thereby fostering more dependance on the medical
establishment. As feeble-mindedness was "incurable", patients under
this system would require complete care as it was due to their
"sickness" that people were institutionalized. At the same time, many
cities in the US continued to uphold "Ugly Laws", passed earlier in the
century which made being disabled a crime. This piece from the Chicago
Municipal Code, sec. 36034 includes the following ordinance (that was
not repealed until 1974):
</span><br />
<blockquote class="tr_bq">
<span style="font-family: Verdana,sans-serif;"><i>"No person who is diseased, maimed,
mutilated or in any way deformed so as to be an unsightly or disgusting
object or improper person to be allowed in or on the public ways or
other public places in this city, or shall therein or thereon expose
himself to public view, under a penalty of not less than one dollar nor
more than fifty dollars for each offense." </i></span></blockquote>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://www.disabilitymuseum.org/utils/image_wrapper.php?visual_still_id=1776&max_width=500&max_height=550&border_width=0&border_color=000000&overlay_text=&text_placement=bottom&emboss_text=1&text_justification=center&box_text=0&text_color=guess&place_text_on_image=1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://www.disabilitymuseum.org/utils/image_wrapper.php?visual_still_id=1776&max_width=500&max_height=550&border_width=0&border_color=000000&overlay_text=&text_placement=bottom&emboss_text=1&text_justification=center&box_text=0&text_color=guess&place_text_on_image=1" height="320" width="310" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><i>"We were greatly heartened by the appearance. It resembled a </i></span><br />
<span style="font-family: Verdana,sans-serif;"><i>college campus."</i>
Image courtesy of the <a href="http://www.disabilitymuseum.org/dhm/index.html" target="_blank">Disability History Museum</a></span></td></tr>
</tbody></table>
<span style="font-family: Verdana,sans-serif;">After the war, doctors continued to urge parents to
place their children in institutions. During this time, having a child
or family member with a disability was seen as a burden. This story
from <a href="http://www.rotary.org/en/MediaAndNews/TheRotarian/Pages/ridefault.aspx" target="_blank">The Rotarian</a>
in 1945 clearly displays the thinking of the day where "A Father"
outlines the reason for institutionalizing his daughter for a
"hopeless brain condition", diagnosed after a stay at a children's centre: </span><br />
<blockquote>
<span style="font-family: Verdana,sans-serif;"><i>"After
two weeks of observation and a brain X ray, the doctors decided that
Mary Lou had a hopeless brain condition and recommended that for our own
good and the welfare of the two children we place her in an
institution." </i></span></blockquote>
<span style="font-family: Verdana,sans-serif;">The "brain x-ray" in this case is probably referring to a common diagnostic technique of the time, <a href="http://en.wikipedia.org/wiki/Pneumoencephalography" target="_blank"><i>Pneumoencephalography</i></a>,
whereby small holes were bored in the skull, the protective cerebral
spinal fluid drained from around the brain and replaced with gas,
usually room air, oxygen or helium. An x-ray was then taken. The
procedure was quite painful, caused headaches, nausea, vomiting and
delerium that could last months until the body naturally replaced the
cerebral spinal fluid. At worst, it could cause brain damage, paralysis
and death.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">"A Father" felt, if Mary-Lou was kept
at home, it would disrupt family life and result in public ridicule and
shame;</span><br />
<div style="text-align: left;">
<blockquote>
<span style="font-family: Verdana,sans-serif;"><i>"If we did
[keep her at home], we should have to curtail normal family activities,
to make the environment as simple as possible, for, as is typical in
such cases, Mary Lou became frantic over the bustle of the simplest
household tasks. We knew, too, that we would have to devote the major
part of our time to her, leaving her little brother to develop as best
he could. We felt that he already had been neglected. <br /><br />Also,
having witnessed the ridicule and ill treatment which residents of our
home town turned on the "village half-wit" and his family, we understood
what keeping her with us would mean to our family..."</i></span></blockquote>
<span style="font-family: Verdana,sans-serif;">Her admission to a state facility was described as quick and efficient; the results curative. The story concludes with <i>"And so tragedy came into a family that barely knew the word. We think, we pray, we have faced it wisely"</i>.
</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span></div>
<span style="font-family: Verdana,sans-serif;">Between 1946 and 1967, the number of people with
disabilities that were housed in public institutions in America
increased from almost 117 000 to over 193 000, a population increase
that was almost double that of the general post-war "baby boom". As
time went on, those admitted were becoming younger and their
disabilities more pronounced. In regards to Down syndrome in particular,
there were many cases where fathers and doctors conspired to have a
baby institutionalized and then told the mother that the baby had died.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: Verdana,sans-serif;"><a href="http://ecx.images-amazon.com/images/I/51vwSDYPS7L._SL500_SY300_.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://ecx.images-amazon.com/images/I/51vwSDYPS7L._SL500_SY300_.jpg" /></a></span></div>
<span style="font-family: Verdana,sans-serif;">Albert Deutsch, who has been described as "a crusading journalist" wrote <i>The Shame of the States</i> in 1948, a compilation of his serial articles (previously published in major newspapers) which exposed the conditions of <a href="http://en.wikipedia.org/wiki/Letchworth_Village" target="_blank">Letchworth Village</a>
in New York. At the time, Letchworth was considered to be one of the
better institutions in the US, as it had taken great pains in its
creation to ensure that the overcrowding and abuses that had occurred in
other places would not be repeated there.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Opening in 1911, <a href="http://en.wikipedia.org/wiki/Letchworth_Village" target="_blank">Letchworth Village</a>
was one of the first completely encapsulated "state schools". It
included its own farm, power plant and hospital. In the words of the
first superintendent, Charles S. Little;</span><br />
<blockquote>
<span style="font-family: Verdana,sans-serif;"><i>..."buildings
should not be more than two stories high, nor should they contain more
than seventy inmates; that the basements should not be used for purposes
other than storage; that the dormitories should be at least two hundred
feet apart, with sufficient space for each to have its own playgrounds;
that there should be such separation of groups that inmates of one
grade could not come in contact with those of another grade; and that in
locating the buildings advantage should be taken of the natural beauty
of the place."</i></span></blockquote>
<span style="font-family: Verdana,sans-serif;"><br /></span>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOS5tali1K8PfKqhsxmD7nc_kOhpLOQfELvgsyjxnj1SzTMlKiXxXfKDxhh_S-EY1ocDkxoD6Tpa1UH8ZOkOJttREaBmf8ZK1dLto_7_BXyzRhmpJ8MIjJ0lD0KmJ_Ub4FuEv1MUA3nQ/s1600/Letchworth-Village-main.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOS5tali1K8PfKqhsxmD7nc_kOhpLOQfELvgsyjxnj1SzTMlKiXxXfKDxhh_S-EY1ocDkxoD6Tpa1UH8ZOkOJttREaBmf8ZK1dLto_7_BXyzRhmpJ8MIjJ0lD0KmJ_Ub4FuEv1MUA3nQ/s320/Letchworth-Village-main.jpg" height="160" width="320" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Photo of Letchworth Village, looking like a college campus.</span></td></tr>
</tbody></table>
<span style="font-family: Verdana,sans-serif;">Patients were divided into separate categories or
"grades" and were kept apart: "moron", "imbecile" and "idiot", the last
deemed "untrainable" and therefore initially excluded from admittance
to Letchworth as they were unable, in his eyes, "to benefit the state".
As further described by Little:</span><br />
<blockquote>
<span style="font-family: Verdana,sans-serif;"><i>"...it is a home
where the feeble-minded and epileptic of all ages may be given the
pleasures and comforts of the ordinary home. To this end our day rooms
will be provided with games, colored pictures, flowers, music, etc. Each
dormitory will have its own playgrounds where base-ball, football,
basket-ball, croquet, etc., may be played by the children. Swings,
hammocks, and picnic grounds will be provided for in a grove. Holidays
will be celebrated in an appropriate and American fashion. A birthday
party will be given each month for those having birthdays that month,
making a gala evening for all. Inmates and employes will join in a
weekly dance. There will be Sunday services appropriate to the condition
and belief of the various inmates."</i></span></blockquote>
<span style="font-family: Verdana,sans-serif;">Residents
tended to fields and flocks of livestock, built roads, shoveled coal and
made toys at Christmastime. It may sound idyllic, but by 1921, of the
506 people listed at Letchworth, 317 were between the ages of 5 and 17,
while 11 were under the age of 5. Their labour force consisted mainly
of children and visitors and staff would report shortages of food and
that the patients looked ill and malnourished. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">As time went on the population at Letchworth
continued to grow. Despite this, the state refused to construct any
additional buildings and by the end of 1921, 1200 patients were housed
there. By the 1950's, that number had swollen to over 4,000. Families
were abandoning their relatives there to be forgotten. Deutsch called
it "<i>euthanasia through neglect..."</i>.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Photographer
Irving Haberman did a photo series on Letchworth which further exposed
the conditions of the dirty, malnourished, neglected unkempt patients.
Residents are seen huddling naked in the day rooms. Similar exposés were
done on many other institutions; Time magazine would feature Byberry
Hospital, also known as the <a href="http://en.wikipedia.org/wiki/Philadelphia_State_Hospital_at_Byberry" target="_blank">Philadelphia State Hospital</a>, in 1946 which exhibited appalling imagery of overcrowding, abuse and severe neglect.</span><br />
<span style="font-family: Verdana,sans-serif;"></span>
<br />
<span style="font-family: Verdana,sans-serif;">The <a href="http://en.wikipedia.org/wiki/Nuremberg_Code" target="_blank">Nuremburg Code</a>
was created in 1947 and gave worldwide guidelines for human trials and
experimentation. However, many children in the state schools were still
the subjects of experiments, including early testing for
vaccinations. Many doctors at the time argued that these rules applied <i>only</i> to Nazi atrocities, not American medicine. The first polio vaccine was in fact tested at Letchworth
in 1950, after much lobbying by the then superintendent, Dr. Jervis.
By that time, Letchworth was considered to be highly regarded in the
medical community, despite it's shady reputation in the greater
community. The <a href="http://en.wikipedia.org/wiki/Walter_E._Fernald_Developmental_Center" target="_blank">Fernald Center</a> in Massachusetts (<a href="http://downwitdat.blogspot.ca/2012/10/a-brief-history-of-down-syndrome-part-5.html" target="_blank">superintended by eugenisist</a> <a href="http://downwitdat.blogspot.ca/2012/10/a-brief-history-of-down-syndrome-part-5.html" target="_blank">Walter E. Fernald</a>)
was the site of a joint experiment between MIT, Harvard University, The
Atomic Energy commission and the Quaker Oats Company that exposed male
patients to radioactive isotopes between 1946-1953. Parents were given
the following notice:</span><br />
<blockquote class="tr_bq">
<span style="font-family: Verdana,sans-serif;"><i>Dear Parent:
</i></span><br />
<span style="font-family: Verdana,sans-serif;"><i>
In the previous years we have done some examination in connection
with the nutritional department of the Massachusetts Institute of
Technology, with the purposes of helping to improve the nutrition of
our children and to help them in general more efficiently than
before.
</i></span><br />
<span style="font-family: Verdana,sans-serif;"><i>
For the checking up of the children, we occasionally need to take
some blood samples which are then analyzed. The blood samples are
taken after one test meal which consists of a special breakfast meal
containing a certain amount of calcium. We have asked for volunteers
to give a sample of blood once a month for three months, and your son
has agreed to volunteer because the boys who belong to the Science
Club have many additional privileges. They get one quart of milk
daily during that time, and are taken to a baseball game, to the
beach and to some outside dinners and they enjoy it greatly.
</i></span><br />
<span style="font-family: Verdana,sans-serif;"><i>
I hope that you have no objection that your son is voluntarily
participating in this study. The first study will start Monday, June
8th, and if you have not expressed any objections we will assume that
your son may participate.
</i></span><br />
<span style="font-family: Verdana,sans-serif;"><i>
Sincerely yours,
</i></span><br />
<span style="font-family: Verdana,sans-serif;"><i>
Clemens E. Benda, M.D.<br />
[Fernald] Clinical Director</i></span></blockquote>
<span style="font-family: Verdana,sans-serif;">What was not mentioned to the parents was that the calcium given to their children in the milk was radioactive.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">From the mid 1950's to the early 1970's, researchers at the <a href="http://en.wikipedia.org/wiki/Willowbrook_State_School" target="_blank">Willowbrook State School</a> in New York, carried out experiments on children that were deliberately infected with Hepatitis A and then treated with <a href="https://en.wikipedia.org/wiki/Gamma_globulin" target="_blank">gamma globulin</a>.
In the early years of the study, patients were fed infected fecal
matter. Later they would be injected with more pure versions of the
virus. Those that investigated the abuses surmised that the children
would probably have gotten Hepatitis at Willowbrook anyway due to
frequent outbreaks, so that it was probably "for the best" that they got
it under such scientific circumstances. At one point the school was
closed to new admissions, except for the Hepatitis program. This led to
parents agreeing to allow their children to be the subjects of
experiments, just to be able to admit their child to Willowbrook.
Either way, both parents and children were given very little choice
whether or not to participate in the program.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://bobpaley.com/assets/home/Letchworth_patients_by_Bob_Paley.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://bobpaley.com/assets/home/Letchworth_patients_by_Bob_Paley.jpg" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Patients at Letchworth. Photo courtesy of <a href="http://bobpaley.com/" target="_blank">Bob Paley</a></span></td></tr>
</tbody></table>
<span style="font-family: Verdana,sans-serif;">Between 1917 and 1967, those that died at Letchworth,
Willowbrook and other facilities like them, were buried anonymously.
Steel or stone numbers were their only monument, possibly due to cost or
at the families wishes of privacy. Regardless, even in death, these
people were denied their basic humanity, up to and including their own
name.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">In 1948 in Great Britain, the National Health
Service (NHS) was introduced and institutions were now nationalized and
transformed into actual hospitals (yet run like schools). Emphasis then
shifted to admitting only the most disabled and those with behavioural
issues. Also that year, the National Assistance Act (which replaced the
"Poor Laws" of Elizabeth I) made it a duty of local authorities to
arrange assistance for those who were deaf, blind, dumb, handicapped by
illness, injury, congenital deformity or suffering from a mental
disorder (which included developmental delays). This included increasing
access to specialized education.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><img border="0" src="http://mn.gov/mnddc/parallels/five/5a/5a_img/poster.JPG" height="148" style="margin-left: auto; margin-right: auto;" width="400" /></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Image courtesy of <a href="http://www.mnddc.org/index.html" target="_blank">The Minnesota Governor's Council on Developmental Disabilities</a></span></td></tr>
</tbody></table>
<span style="font-family: Verdana,sans-serif;">In 1950, another<i> </i>surge of advocacy took place in the United States. Parents had begun to organize and had created the <a href="http://www.thearc.org/page.aspx?pid=2339" target="_blank">National Association of Parents and Friends of Retarded Children</a>
(which would later become The ARC). By 1952 many US states had created
legislation for educating children with intellectual disabilities
(although those that were classified "moderate" to "severe" were
excluded). As the 20th century would progress, the horrors of the
institutions were becoming more commonly known, yet still persisted.
Sterilization, lobotomization, tortuous experimental "treatments" and
physical abuse were still the norm and the numbers of children being
admitted continued to climb. Instead of "feeble-minded" "moron"
"imbecile" and "idiot" the terminology of choice was now changed to <i>retarded</i>,
a blanket term that included any and all learning disabilities and
developmental delays. ("Mongolism" would still be used to describe Down
syndrome until 1965). With the ease of one word, society was now able
to dismiss an entire segment of the disability community, while
callously watching their plight on the evening news.</span><br />
<center>
</center>
<div style="text-align: left;">
By the 1960's even the
architecture of the institutional buildings had evolved to reflect the
culture of medicine, of the hospital. Staff had separate showers,
lounges and toilets. The floors were easy to wash tile, bathrooms were
stall-less and completely devoid of privacy for ease of both cleaning
and supervising residents <i>en masse</i>. Furniture was sparse, hard
and unwelcoming. Medical professionals wore clinical white uniforms and
jackets, their names and position clearly displayed on name tags. It
was a stark contrast to the patients who wore communal clothing of
various states of (dis)repair. It was very clear who was in control.</div>
</div>
<br />
<span style="font-family: Verdana,sans-serif;"></span>
<span style="font-family: Verdana,sans-serif;">Niels
Erk Bank-Mikkelsen, the director of the Danish national services for
Mental Retardation visited an institution in California in the 1960's.
His report included the following <i>"I couldn't believe
my eyes. It was worse than any institution I have seen in visits to a dozen
foreign countries. . . . In our country, we would not be allowed to treat cattle
like that."</i></span>
<br />
<div style="text-align: left;">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://www.disabilitymuseum.org/utils/image_wrapper.php?visual_still_id=1816&max_width=500&max_height=550&border_width=0&border_color=000000&overlay_text=&text_placement=bottom&emboss_text=1&text_justification=center&box_text=0&text_color=guess&place_text_on_image=1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://www.disabilitymuseum.org/utils/image_wrapper.php?visual_still_id=1816&max_width=500&max_height=550&border_width=0&border_color=000000&overlay_text=&text_placement=bottom&emboss_text=1&text_justification=center&box_text=0&text_color=guess&place_text_on_image=1" height="320" width="288" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">From "Christmas in Purgatory".
Image courtesy </span><br />
<span style="font-family: Verdana,sans-serif;">of the <a href="http://www.disabilitymuseum.org/dhm/index.html" target="_blank">Disability History Museum</a></span></td></tr>
</tbody></table>
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">President John F. Kennedy Jr. formed The
President's Panel on Mental Retardation in 1962. The panel was
comprised mainly of medical professionals and focused on both treatment
and prevention. "Retardation" itself was seen as something to "combat".</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Senator Robert Kennedy toured Willowbrook in 1965, (accompanied by a TV crew) and compared it to a <i>"snake pit"</i>. It's population of 6000 children was 2000 over capacity. He described the children as "<i>living in filth and dirt, their clothing in
rags, in rooms less comfortable and cheerful than the cages in which we
put animals in a zoo".</i> Later he would address a joint session of
the New York legislation regarding the "dehumanizing" conditions at both
the Willowbrook and Rome State Schools. During his speech, he declared
that the residents of the institutions were denied both access to
appropriate education and their overall civil liberties. The following
year, Willowbrook was featured again as one of the institutions in "<i>Christmas in Purgatory</i>"
when Dr. Burton Blatt and photographer Fred Kaplan used hidden cameras
to capture images of the atrocities in several institutions. According
to Dr. Blatt "<i>there is a hell on earth and in America there is a special inferno</i>".
Senator Kennedy received a great deal of backlash from his comments,
most insinuating that non-medical personnel would be unable to classify
or understand what they were witnessing in "whirlwind tours". Dr. Blatt
reacted to them thusly:</span><br />
<blockquote class="tr_bq">
<span style="font-family: Verdana,sans-serif;"><i>"It does not
require a scientific background or a great deal of observation to
determine that one has entered the "land of the living dead." It does
not require too imaginative a mind or too sensitive a proboscis to
realize that one has stumbled into a dung hill, regardless of how it is
camouflaged..." </i></span></blockquote>
<span style="font-family: Verdana,sans-serif;"><i>"Christmas in Purgatory"</i>
also gives insight into the treatment of infants and very young children
in such places. Warehoused in extremely overcrowded, spartan
surroundings and devoid of stimulation including human touch, it is easy
to see how the people there never stood a chance.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihnAafm1xjO4tbAmxBYU708znyVeoo0N-BT4pvWHfk9cZfj_Xpxc7jnpkpjx3KvXiZ7mxGqLNBvH8ssuUxRhyphenhyphen9vElO1E1ACMXnSX_B-LYYQ1tOw_jEhxctGlEMq2iM47eDC3nL4dd8tA/s1600/crib.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihnAafm1xjO4tbAmxBYU708znyVeoo0N-BT4pvWHfk9cZfj_Xpxc7jnpkpjx3KvXiZ7mxGqLNBvH8ssuUxRhyphenhyphen9vElO1E1ACMXnSX_B-LYYQ1tOw_jEhxctGlEMq2iM47eDC3nL4dd8tA/s320/crib.jpg" height="320" width="249" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">From "Christmas in Purgatory".
Image courtesy </span><br />
<span style="font-family: Verdana,sans-serif;">of the <a href="http://www.disabilitymuseum.org/dhm/index.html" target="_blank">Disability History Museum</a></span></td></tr>
</tbody></table>
<blockquote>
<span style="font-family: Verdana,sans-serif;"><i>"The infant dormitories depressed us
the most. Here, cribs were placed-as in the other dormitories-side by
side and head to head. Very young children, one and two years of age,
were lying in cribs, without interaction with any adult, without
playthings, without any apparent stimulation. In one dormitory, that had
over 100 infants and was connected to 9 other dormitories that totaled
1,000 infants, we experienced a heartbreaking encounter. As we entered,
we heard a muffled sound emanating from the "blind'' side of a doorway. A
young child seemed to be calling, "Come. Come play with me. Touch me."</i></span></blockquote>
<blockquote class="tr_bq">
<span style="font-family: Verdana,sans-serif;"><i>"In
other day rooms, we saw groups of 20 and 30 very young children lying,
rocking, sleeping, sitting- alone. Each of these rooms were without toys
or adult human contact, although each had desperate looking adult
attendants "standing by." </i></span> </blockquote>
<blockquote class="tr_bq">
<span style="font-family: Verdana,sans-serif;"><i>"In
some of the children's dormitories we observed "nursery programs." What
surprised us most was their scarcity and the primitiveness of those in
operation. Therefore, we were not unprepared to see several children
with severe head lacerations. We were told these were "head bangers."
Head banging is another condition that some people think is inevitable
when confronted with young severely mentally retarded children. We
challenge this. We have reason to believe that head banging can be
drastically reduced in an environment where children have other things
to do. The "Special Education" we observed in the dormitories for young
children was certainly not education. But, it was special. It was among
the most especially frightening and depressing encounters with human
beings we have ever experienced..."</i></span></blockquote>
<div style="text-align: left;">
<span style="font-family: Verdana,sans-serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: Verdana,sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkmjVsnT2mijbM7QlyxS7wNFgN2twfIH359_mXd3YGUlJSZ1URI16WXmkx4JRwPXFHvWSM4KoAHT8IfOvvn4ETogsy77gPpO6gDgJN9Wa3kq8G9ZAAWwdXGWXH_HwgRcW_fgOXXrPxBw/s1600/women.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><br /></a></span></div>
</div>
<div style="text-align: left;">
<span style="font-family: Verdana,sans-serif;">This news special produced by NBC in 1968 still clearly shows subhuman living conditions in <a href="http://en.wikipedia.org/wiki/Pennhurst_State_School_and_Hospital" target="_blank">The Pennhurst State Home</a> in Pennsylvania. </span></div>
<span style="font-family: Verdana,sans-serif;"><br /></span>
<br />
<div style="text-align: center;">
<span style="font-family: Verdana,sans-serif;">"Suffer the Little Children" by Bill Baldini</span></div>
<div style="text-align: left;">
<br />
<span style="font-family: Verdana,sans-serif;">Although these reports and many like it would spark
legislation that would begin the closing of the institutions, many were
open and still functioning like this until the early 1980's. Despite
frequent exposés in the <i>Staten Island Advance</i> and other area
papers, the allegations of abuse at Willowbrook continued to surface.
In 1972, Geraldo Rivera, then working as an ABC News reporter, went to
Willowbrook to film "<i>Willowbrook: The Last Disgrace</i>". His
story, which won a Peabody Award, showcased the overcrowded, unsanitary
conditions and the physical abuse of the patients by the staff.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Even
with all the publicity, even with all the images, stories and coverage,
the institutions, according to one doctor at Willowbrook, had only
worsened since Kennedy's visit.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">The classification of
"retarded" and related terms would continue to affect public perception
and access to care for people with intellectual disabilities well into
the 21st century. In the UK, a pamphlet published by The National
Society for Mentally Handicapped Children in 1973 (eight years after the
term mongolism had been changed to "Down's Syndrome"), had this to say:<i><br /></i></span><br />
<blockquote>
<span style="font-family: Verdana,sans-serif;"><i>
"when informed by their doctor that their child is affected with
mongolism and warned that it may show some mental backwardness, parents
often imagine the worst and think that their child will never walk or
talk. Although a few mongol children are as handicapped as this and
they can live at home when young, they will probably later need
permanent hospital care..."</i></span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;"><i>"... Due to their
slow intellectual growth most mongols are precluded from making
satisfactory progress in formal education of the type provided by Local
education authorities. However they benefit from the less formal type of
education which they receive at the special centres provided by the
local Department of Health although these are not always yet available
in the more sparsely populated areas of Britain. </i></span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;"><i>In
addition to the two already mentioned there is a third considerably
smaller group of children with mongolism who are even less backward and
devlop intellectually from a half to two thirds the rate of an average
child. Many of this group can profit from formal education, particularly
when given in the smaller classes with specially trained teachers in
schools for the educationally subnormal"</i><b><i><i><i> </i></i></i></b></span></blockquote>
<span style="font-family: Verdana,sans-serif;">Doctors
continued to refuse lifesaving procedures (such as heart surgery) to
those with Down syndrome up until 1984; in fact there were many
physicians that still classified <i>feeding</i> a child with an
intellectual disability to be a lifesaving procedure. Until the
institutions were finally closed, hundreds of thousands of people with
disabilities had been discarded by their families, segregated, abused
sexually, physically and mentally, not to mention violated by
sterilization and experimentation. All with society's blessing as it
was considered "<i>the right thing to do</i>".</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">We may
never know the full extent of the abuse, nor of how many people with
disabilities were disposed of out of hand, like so much garbage. It
would take almost to the end of the last century for the final
institution to be closed. It would take even longer for the general
public to <i>begin</i> to understand terms such as "dignity" "rights"
and "civil liberties" in relation to those with intellectual
disabilities. The term "retarded" is just now being replaced in the
medical literature; it will no doubt take many more to remove it from
Western vernacular.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">We in society have a responsibility
to ensure that these victims are not forgotten. We also have a mandate
to ensure that such atrocities <i>never</i> happen to another human being ever again. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://graphics8.nytimes.com/images/2007/12/13/nyregion/13towns-600.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://graphics8.nytimes.com/images/2007/12/13/nyregion/13towns-600.jpg" height="320" width="640" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Anonymous graves at Letchfield Village. Photo courtesy of the <a href="http://www.nytimes.com/2007/12/13/nyregion/13towns.html?_r=0" target="_blank">New York Times</a>.</span></td></tr>
</tbody></table>
</div>
<div style="text-align: left;">
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">[Next time: The rise of the parent advocate]</span></div>
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">-----------</span>
<span style="font-family: Verdana,sans-serif;">Applebome, Peter. "<a href="http://www.nytimes.com/2007/12/13/nyregion/13towns.html?_r=0" target="_blank">Giving Names to Souls Forgotten No Longer.</a>" <i>The New York Times</i>. The New York Times, 13 Dec. 2007. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Buteux, Lindsay. "<a href="http://issuu.com/outlookpress/docs/vol_43_issue_7__nov_i__final">Letchworth: The Village of Secrets</a>." <i>Outlook Student Press</i>.
Outlook Student Press, 8 Nov. 2010. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;"><span class="reference-text">Chicago Municipal Code, sec. 36034 (repealed 1974).</span></span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Christmas
in Purgatory, Blatt and Kaplan, (Previously published by Allyn and
Bacon, Inc., 1966) current copyright, Human Policy Press, Center on
Human Policy Syracuse University P.O. Box 35127 Syracuse, NY, 1974.<span class="reference-text"> </span></span><br />
<span style="font-family: Verdana,sans-serif;"> </span><br />
<span style="font-family: Verdana,sans-serif;">Corcoran, David. "<a href="http://www.nytimes.com/1991/12/09/nyregion/thiells-journal-graves-without-names-for-the-forgotten-mentally-retarded.html">THIELLS JOURNAL; Graves Without Names for the Forgotten Mentally Retarded.</a>" <i>The New York Times</i>.
The New York Times, 09 Dec. 1991. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">"<a href="http://dhss.alaska.gov/gcdse/Pages/history/html_content_main.aspx" target="_blank">Disability History Exhibit</a>." <i>Disability History Panels</i>. <a href="http://dhss.alaska.gov/gcdse/Pages/default.aspx" target="_blank">Alaska Department of Health and Social Services</a>.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Harkins, Don. "<a href="http://proliberty.com/observer/19990504.htm" target="_blank">Federal Government Publishes Confession; 1995 Report to Clinton Documents 30 Years of Radiation Experiments</a>." <i>The Idaho Observer</i> [Spirit Lake, Idaho] May 1999: <i>The Idaho Observer</i>. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">"<a href="http://abandonednyc.com/2012/08/05/legend-tripping-in-letchworth-village/">Legend Tripping in Letchworth Village.</a>" <a href="http://abandonednyc.com/"><i>AbandonedNYC</i></a>. N.p., 5 Aug. 2012. </span><br />
<span style="font-family: Verdana,sans-serif;">Little, Charles S., MD. <a href="http://www.disabilitymuseum.org/dhm/lib/detail.html?id=1738"><i>Letchworth Village: The Newest State Institution For The Feeble-minded And Epileptic</i></a>. The Survey, 12 Mar. 1912. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;"><a href="http://www.mnddc.org/parallels/index.html" target="_blank"><i>Paralells in Time; A History of Developmental Disabilitie</i></a>s, <a href="http://www.mnddc.org/index.html" target="_blank">The Minnesota Governor's Council on Developmental Disabilities</a>, 2012.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;"><span class="reference-text"><span class="citation news">Staff (September 10, 1965). <a class="external text" href="http://select.nytimes.com/gst/abstract.html?res=F30E17F63C5A157A93C2A81782D85F418685F9" rel="nofollow">"Excerpts From Statement by Kennedy"</a>. <i><a href="http://en.wikipedia.org/wiki/The_New_York_Times" title="The New York Times">The New York Times</a></i><span class="reference-accessdate">. </span></span></span></span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;"><i><a href="http://www.youtube.com/watch?v=YG33HvIKOgQ" target="_blank">Suffer The Little Children, Pennhurst State Home: Eugenics + Social Services</a> - Pennsylvania</i>. Perf. Bill Baldini. NBC10, 1968.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Slater, Catherine, MA. "<a href="http://caslater.freeservers.com/disability1.htm" target="_blank">A History of Mental Disability 1000AD-2000AD:From Idiocy to Intellectual Impairment</a> Web. 22 July 2013.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;"><i>The Child with Mongolism: 80 to 90 Per Cent Can Learn to Do Simple Tasks</i>. Great Britain: National Society for Mentally Handicapped Children, 1973. Print. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">"<a href="http://www.disabilitymuseum.org/dhm/lib/detail.html?id=896&&page=all" target="_blank">We Committed Our Child</a>." <i>The Rotarian</i> (1945): <a href="http://www.disabilitymuseum.org/dhm/index.html" target="_blank"><i>Disability History Museum</i></a>.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">"Willowbrook State School." <a href="http://www.asylumprojects.org/index.php?title=Main_Page" target="_blank"><i>Asylum Projects</i></a>. Asylum Projects, n.d. Web. </span><br />
--------------------<br />
<br />
<span style="font-family: Verdana,sans-serif;"><span style="font-family: Verdana,sans-serif;"><i>[Originally appeared on <a href="http://downwitdat.blogspot.com/">Down Wit Dat</a>] </i></span></span></div>
</div>
Psychojenichttp://www.blogger.com/profile/02936930614210195529noreply@blogger.com1tag:blogger.com,1999:blog-7460552419406225222.post-26803159339142442472013-07-13T12:52:00.001-04:002013-07-13T12:54:00.511-04:00A Year Ago Today, or Letting the Past Person You Were Deal With Her Shit<span style="font-family: Trebuchet MS, sans-serif;">Last year, on the 11th , I spent the day in a fine state of anxiety. The Dr. who had performed my amniocentesis had said there was a possibility that the 11th might be the day they received my FISH results. I practiced being positive by telling my mom and H "Down syndrome is not a big deal. It's going to be okay." My inward reflections were a bit more complicated. I would go to the bathroom and cry quietly because I didn't want my mom or H to worry. At about noon, I started to relax because even while I did want to know, I also kind of didn't. There was a bit of peace in that in between land but if I was honest, it was peaceful because I would tell myself that Jude did not have Down syndrome.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">The peace was shattered when the phone rang at 2:00. The results were in. Jude had Down syndrome. I spent a lot of the day weepy. Not from sorrow or regret. I was scared. I didn't know much about Down syndrome. I cried from the fear. But I also cried because people reached out to me. Women on the pregnancy board at Baby Center told me it was going to be okay. My friends told me it was going to be okay. My husband and my mom told me it was going to be okay. The only one who worried it wasn't going to be okay seemed to be me. '</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">But what I did know was important. I knew that I wanted this little fetus growing in my belly as much as I had wanted all my other beasties. Love is a powerful thing. But sometimes even love's light doesn't chase the shadows away.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<br />
<div class="separator" style="clear: both;">
<span style="font-family: Trebuchet MS, sans-serif;">The real stuff happened in the coming months. The hard stuff. The good stuff. Because here's the thing. I wouldn't go back in time and tell the past Ginger anything. She had some shit she needed to work through you see. And yeah my bad ass future self feels a little bad for her tears and boohooing BUT...</span></div>
<div class="separator" style="clear: both;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both;">
<span style="font-family: Trebuchet MS, sans-serif;">Well let me haul out my favorite Audre Lorde quote: "I urge each one of us here to reach down into that deep place of knowledge inside herself and touch that terror and loathing of any difference that lives here. See whose face it wears. Then the personal as well as the political can begin to illuminate all our choices." I used to focus on the Master's tools part of the quote which I left out in this space because I realized how incredibly fucking important the remaining piece is to becoming a person of conscience, compassion, and action. You see the personal as political isn't about your warm fuzzy feelings, or about spilling your guts in a tell all memoir. Instead, it's something harder, something that requires work, and frankly, something that feels pretty damn awful while you're going through it. The personal only becomes political when you finish an examination of how you embody the power that oppresses you and others. When you root it out, acknowledge it, and turn into an impetus for change.</span></div>
<div class="separator" style="clear: both;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both;">
<span style="font-family: Trebuchet MS, sans-serif;">What happened is that for the next five months, I had to do this hard work. I had to face my own prejudice about people with intellectual disabilities. I'm not going to make any excuses for myself either. It doesn't matter that I didn't know anyone with Down syndrome. Not knowing people who are different in various ways is not an excuse for ignorance or intolerance. Nor does it matter that I was scared. I say this because I had to be frank with myself. I knew better, you see, because I have studied difference. I have lived with it in various ways. But there was still deep inside me a fear of a certain kind of difference. A fear that came from my own arrogance, my own insecurities. I who had placed so value on the academy was about to give birth to a child who challenged if that was even valuable. </span></div>
<div class="separator" style="clear: both;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both;">
<span style="font-family: Trebuchet MS, sans-serif;">And trust me I believed some bad shit. I thought she was going to be hideous and thus had to root out all my bias on difference being beautiful. Difference is beautiful I would come to see before I even laid eyes on my lovely daughter. <a href="http://www.dawisonpinheiro.com.br/blog/?p=6691" target="_blank">People with Down syndrome are beautiful</a>. Very. In fact, I think beauty is so much bigger than I ever allowed myself to see.</span></div>
<div>
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div>
<div class="separator" style="clear: both;">
<span style="font-family: Trebuchet MS, sans-serif;">I thought people with Down syndrome were dull and uninterested in the world. I began to read about people with Down syndrome. They were clearly engaged and excited about the world.<a href="https://www.facebook.com/OliverHellowellPhotographer?notif_t=fbpage_fan_invite" target="_blank"> Many were artists.</a> Some were activists. And most were just average people like me. Living life as it came at them. </span></div>
</div>
<div>
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Trebuchet MS, sans-serif;">I thought that Jude would be a drain on her siblings. I worried that I would spend so much time "fixing" her that they would resent the lost time. I feared they would not want to take care of her when she was older. <a href="http://www.dsamn.org/wp-content/uploads/2012/03/SiblingArticle.pdf" target="_blank">What I learned is that people who siblings with Down syndrome have more positive experiences than negative.</a></span></div>
<div>
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div>
<div class="separator" style="clear: both;">
<span style="font-family: Trebuchet MS, sans-serif;">Somewhere along my dark journey to true love, I also learned that people with Down syndrome sometimes go to college. But by that point it no longer really mattered. Because what I had really learned through all this was that people with Down syndrome were different, yes, but different in the ways that we are all different. They were different from each other. Different from me. They were varied, individual with different interests, passions, lives. The only one common experience they seemed to share was that a lot of people didn't see them as being fully human. People like me. And then I shed some tears about my own small cruelty found in ignorance. But after those tears I pulled on my big girl panties. Because seriously? You don't want to fuck with my beasties. And there's a fight to be had here and now for Jude and for people like Jude. Human people. Real people. People who deserve equal care, equal rights, and the opportunity to live a full, varied life. </span></div>
<div class="separator" style="clear: both;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both;">
<span style="font-family: Trebuchet MS, sans-serif;">The personal became the political before I even held Jude's tiny body in my arms. And that is how I became a better person. Not through Jude but because I wanted to be a better person FOR Jude. FOR my other beasties. FOR the world. So no I wouldn't go back and give the past Ginger any tips. She clearly had some shit to work through.</span></div>
</div>
Anonymoushttp://www.blogger.com/profile/09934296564253625199noreply@blogger.com1tag:blogger.com,1999:blog-7460552419406225222.post-522447486928268522013-07-10T11:22:00.000-04:002013-10-29T12:08:56.894-04:00Picking Rocks<div dir="ltr" style="text-align: left;" trbidi="on">
<div style="text-align: left;" trbidi="on">
<blockquote class="tr_bq">
<span style="font-family: Verdana,sans-serif;"><i>"Ableism is so pervasive that it is difficult to identify until one begins to
interrogate the governing assumptions of well-intentioned society.
Within the space allowed by these rhetorical premises, ableism appears
natural, necessary, and ultimately moral discrimination required for the
normal functioning of civilization."<sup> </sup></i></span></blockquote>
<div style="text-align: left;">
<blockquote class="tr_bq">
<span style="font-family: Verdana,sans-serif;"><i>[A]bleism is that most insidious form of rhetoric that has become reified
and so widely accepted as common sense that it denies its own
rhetoricity—it "goes without saying." To fully address it we
must name its presence, for cultural assumptions accepted uncritically
adopt the mantle of "simple truth" and become extremely difficult to
rebut. As the neologism "ableism" itself testifies, we need new words to
reveal the places it resides and new language to describe how it feeds.
Without doing so, ableist ways of thinking and interpreting will
operate as the context for making sense of any acts challenging
discrimination, which undermines their impact, reduces their symbolic
potential, and can even transform them into superficial measures that
give the appearance of change yet elide a recalcitrant ableist system..."</i></span></blockquote>
<blockquote class="tr_bq">
<span style="font-family: Verdana,sans-serif;">[Excerpts from James. L. Cherney's "<a href="http://dsq-sds.org/article/view/1665/1606" target="_blank">The Rhetoric of Ableism</a>."]</span></blockquote>
</div>
<span style="font-family: Verdana,sans-serif;"> </span><br />
<span style="font-family: Verdana,sans-serif;">I'm
a mother and a nurse, not a scholar. I'm not going to make any
pretensions about that. I'm also a half-assed gardener and
occasionally, I take a pretty picture of something I've grown or of
someone to whom I've given birth. As a "writer" I am one voice in the
wilderness of the blogosphere. I came into this role woefully
unprepared and in the process have discovered many things about Down
syndrome, our world, our Western society and indeed, myself. I started
this place as a "Mommy blogger" and am slowly growing into a disability
advocate. I started out thinking that I could try to change a few minds
and that would help create a world that was more receptive to people
like Wyatt. I wanted to help build a garden where old stereotypes did
not linger in people's minds. A world where the phrase "my son has Down
syndrome" would not automatically generate uncomfortable looks,
apologies or awkward exclamations of sentimental rubbish.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Lately, I've been preoccupied with the subject of <a href="http://en.wikipedia.org/wiki/Ableism" target="_blank">ableism</a> and how it impacts my son. Western culture is rife with it. It is buried, deep within the <a href="http://en.wikipedia.org/wiki/Rhetoric" target="_blank">rhetoric</a>,
deep within the language that we use to share our opinions to one
another. When it comes to the subject of advancement of people with
intellectual disabilities such as Down syndrome, the tools that we
advocates have
chosen to use may appear to advance our goals of inclusion and
acceptance. Sadly, those tools, in many cases, do the exact opposite.
How we view disability,
how we see each other, how we as parent and friend advocates feel about
the the world-at-large all impact our efforts. I've also realized that I
shouldn't be planting anything for my son, but rather preparing the
soil for him to sow a garden of his own. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">It was those two quotes above that finally clarified what I had suspected for some time. We are overgrown with <a href="http://en.wikipedia.org/wiki/Ableism" target="_blank">ableist</a>
rhetoric, whether we mean to be or not, no matter how "good" our
intentions. On the surface, the very words that we choose shape how
others perceive us and how we see the world. The grand daddy of them
all, <a href="http://www.downwitdat.blogspot.ca/2012/03/theres-that-word-again.html" target="_blank">the R word</a>, is a perfect example of this. However, the dialogue goes deeper than that. Like <a href="http://en.wikipedia.org/wiki/Rhizome" target="_blank">rhizomes</a>, negative concepts that shape our entire perception of disability are <a href="http://downwitdat.blogspot.ca/2012/10/a-brief-history-of-down-syndrome-part-4.html" target="_blank">spread throughout our history</a>,
dating back to Aristotle. As Cherney states, ideas such as "normal is
natural", "disability is evil" and the "body is able" are rampant
throughout the Western world. Other rhetoric, including those that
incorporate socioeconomic or religious ideals (such as "disability is
uneducated", "disability is baseborn", "disability is ethnic") seem to
sprout up everywhere.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">These are all part of our great <a href="http://en.wikipedia.org/wiki/Post-colonial" target="_blank">post-colonial</a> tradition of "less than". Our everyday language shows that we see others with disdain. That <i>able</i>
and functioning at optimum physical perfection is what we are all
supposed to be and anything else is a failure; lesser; unworthy. Even
amongst "disabilities" there is a difference. We in the Western world
commonly refer to those that employ physical assistive devices such as
wheelchairs and support animals as "differently abled". Those that have
cognitive impairments however are "developmentally <i>dis</i>abled".</span></div>
<div style="text-align: left;">
<span style="font-family: Verdana,sans-serif;"><br /></span></div>
<div style="text-align: left;">
<span style="font-family: Verdana,sans-serif;"><a href="http://www.flickr.com/photos/psychojenic/182431790/" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;" title="There's a fossil in there somewhere... by PsychoJenic, on Flickr"><img alt="There's a fossil in there somewhere..." height="240" src="http://farm1.staticflickr.com/45/182431790_fcdd7b4698_m.jpg" width="158" /></a>As I've mentioned, I come from a medical background. For years, I embraced a more <a href="http://en.wikipedia.org/wiki/Medical_model_of_disability" target="_blank">mechanical definition of disability,</a> which in its most basic form states "this part isn't working as it should, therefore the patient is <i>disabled</i>". The person is seen as broken, malfunctioning, stunted. This quickly leads to pity disguised as empathy. Then to <a href="http://en.wikipedia.org/wiki/Romanticism" target="_blank">romanticism</a>, as an artistic touch is now given to what is "broken". A more realistic viewpoint is the <a href="http://en.wikipedia.org/wiki/Social_model_of_disability" target="_blank">social model</a>;
this way, disability is described by a series of barriers, exclusions
and negative attitudes (that includes language). An individual may have
a physical, cognitive or psychological difference from their
neighbours, but it is the <i>lack of societal provision </i>that makes it an actual<i> disability</i>.
Humanity is diverse and flourishing; it is only when a person runs
into a situation where their needs are not met, can they be defined as
actually having a <i>disability</i>. Most can easily relate this model
to well known things, such as ramps or closed-captioning. However, when
it comes to DS and challenges of communication and interpretation, as a
culture we cannot seem to move beyond the medical model. No one seems
to want to say that it is society that has disabled these individuals,
not their neurological makeup. Even within the whole of the disability
community itself, those with Down syndrome and related developmental
disorders are considered <i>less than</i>.</span></div>
<div style="text-align: left;">
<span style="font-family: Verdana,sans-serif;"><br /></span></div>
<div style="text-align: left;">
<span style="font-family: Verdana,sans-serif;">From the medical tradition you also get the -isms: <a href="http://en.wikipedia.org/wiki/Infantilism_%28physiological_disorder%29" target="_blank"><i>Infantilism</i></a>,
where those with DS are seen as adult babies, "Baby Huey", or 'forever
children'. It is probably the most insidious, as it strips all dignity
and sense of <i>self</i> and <i>worth</i> from the individual. They are forever dependent, in the most basic sense. There is also <a href="http://en.wikipedia.org/wiki/Anthropomorphism" target="_blank"><i>Anthropomorphism</i></a>,
where those with Down syndrome are referred to in supernatural or
angelic terms or possessing traits that are more like "powers". Quite
possibly the most sneaky of them all (and one that I am guilty of as
well) is <a href="http://en.wikipedia.org/wiki/Paternalism" target="_blank"><i>Paternalism</i></a>,
where all decisions, beyond a point where they should be made by the
person themselves, are removed and placed in the hands of those who are
deemed--by the same abilist society--as being more qualified, be they
parent, school, doctor or organization. This model often decides "what
is best" and assumes as Cherney states, that "<i>it goes without saying</i>",
based on old, outdated practices and ideas. For example, we are told
that those with DS do not follow "typical" patterns of growth or
development and that these ideals should not be applied. Yet, we still
continue to apply them with the attitude of "<i>how else will we know whether the child is behind?</i>",
instead of just allowing the child to develop at their own pace in a
loving, supportive, caring environment. IQ tests are culturally biased
and archaic, yet we still continue to use them to determine 'level of
cognition' and therefore predetermine a person's 'functionality' and
thereby, <i>worth</i>. Our organizations, both religious and
philanthropic, readily fall into this trap too, as they betray their
roots as the charities that they were originally founded as, to help
"the poor unfortunates". Regardless of the origin, regardless of some
degree of "good work" having been performed, regardless of intent, the
result is the same: an abilist act grown of an abilist system. Each
and every time it is employed, it undermines those with Down syndrome.
It hampers efforts to become more visible, for those with DS to move out
of the world of poverty and neglect.</span></div>
<div style="text-align: left;">
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;"><br /></span></div>
<div style="text-align: left;">
<span style="font-family: Verdana,sans-serif;"><a href="http://www.flickr.com/photos/psychojenic/305779212/" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;" title="Rocks by PsychoJenic, on Flickr"><img alt="Rocks" height="180" src="http://farm1.staticflickr.com/119/305779212_816858bfb6_m.jpg" width="240" /></a>
Not surprisingly most of the Down syndrome advocacy movement is borne
of this ableist system, myself included. We allow the rhetoric to
continue by ignoring demeaning language such as the R-word, by
describing our loved ones in childish terms, by giving them "angelic" or
"superhuman" qualities, by romanticizing the medical definition of
disability and by continuing to make all decisions <i>for them. </i> We,
the people that are supposed to be helping, are only perpetuating
stereotypes. Pictures of good looking kids with catchy sayings may
sound like a good idea (and I won't deny that there was a certain
purpose served by this initially), but they are not. My son's extra
chromosome is not kitsch, it is not property, it is not made of love.
He is not an angel and he himself is not perfection incarnate. I did
not design him either, nor do I believe a supreme being handcrafted him
for our family... I only had the pleasure of providing half of his
genetic material.</span></div>
<div style="text-align: left;">
<span style="font-family: Verdana,sans-serif;"><br /></span></div>
<div style="text-align: left;">
<span style="font-family: Verdana,sans-serif;">I've
run into a lot of nationalism too. Recently I read a Letterman-style
"Top 10" list of reasons why one particular country was the <i>best </i>in which<i> </i>to
raise a child with complex needs. The article will no doubt be shared
far and wide within the advocacy communities and it saddens me, as the
article itself is so rife with inconsistencies, poorly researched
half-truths and flat out falsehoods that it actually turned my stomach
to read it. Blogging communities seem to be often divided among these
national lines as well. There also seems to be some kind of hierarchy
in the advocacy world; the more disabled your child/loved one/you are,
coupled with the amount of "time served" you have in this community, the
more of an "expert" you are. Assuming there is such a thing in the
first place. Politics within the movement itself are rapidly threatening
its very life; I don't know whether to laugh or cry when I see those
calling for inclusion acting very negatively and exclusive in their
practise. </span></div>
<div style="text-align: left;">
<span style="font-family: Verdana,sans-serif;"><br /></span></div>
<div style="text-align: left;">
<span style="font-family: Verdana,sans-serif;"><a href="http://www.flickr.com/photos/psychojenic/204920123/" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;" title="Finding your niche... by PsychoJenic, on Flickr"><img alt="Finding your niche..." height="160" src="http://farm1.staticflickr.com/70/204920123_9abd54d998_m.jpg" width="240" /></a>But
what about the world outside? Much of what gets published about Down
syndrome or special needs in the mainstream these days might as well be <i>misery peddling.</i> Subjects that go well beyond simple <a href="http://en.wikipedia.org/wiki/Anticipatory_grief" target="_blank">anticipatory grieving</a> seem to be <i>de rigueur</i>
and are now perpetuating the negative stereotypes that we are fighting
so hard against. Initially, I'm sure this trend was meant to be a way
for parents to find fellowship in what can be some very long and
seemingly isolating days. But, how much negativity can one person read
surrounding a certain condition before they start applying those traits
to that condition? In our sensationalist world, unless a piece about
disability keeps things at <i>status quo</i> (ie: 'less than'), it is
not publishable. Full of anger towards your child's diagnosis? Blame
your child's diagnosis for your own personal issues? STOP THE PRESSES!
Depression, disgust, having to "force" one's self to play with one's
own child... these are are all things that go well beyond the realm of a
grief reaction or situational crisis and in the end only feed our
detractors and probably belongs in a therapist's office. In the end,
which is worse? Our own community disparaging those that they claim to
represent, or those outside that hate our kids? </span></div>
<div style="text-align: left;">
<span style="font-family: Verdana,sans-serif;"><br /></span></div>
<div style="text-align: left;">
<span style="font-family: Verdana,sans-serif;">Then
there is the stereotypical "Down syndrome superstar", who by having a
prom date or scoring a goal or participating in a major life event,
allows all to feel misty, <i>paternal</i> feelings. Add a little more
anthropomorphism, in the guise of "angels" and "my child has made me a
better person" and you have the domain of <i>inspiraporn</i>, which is
just more ableist rhetoric. The reality is that not every child will be
a superstar and the effects of the extra chromosome will vary from
child to child, as well as the resources and supports made available to
them. I'm personally guilty of this one, not realizing that the reason I
felt the way I did when Wyatt was diagnosed with his AVSD (and probable
chromosomal disorder) <i>in utero</i>, was the ableist society in which
I lived. If my culture had not continued to push the idea of the
"hardship" or the "broken child", would I have been as sad as I was
initially with his diagnosis? Would I have grasped blindly for for the
first sign of positivity, the first glimmer of "hope" in the form of
staged photo-ops and over the top inspirational motifs? Let me put it
another way: if one truly accepts people with intellectual disabilities
and developmental delays as equals, these stories would not be news.
However, many cling to them desperately, willing to overlook the weeds
of ableism and instead renaming it a wildflower of "awareness".</span></div>
<div style="text-align: left;">
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;"><br /></span></div>
<div style="text-align: left;">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://i1113.photobucket.com/albums/k501/Psychojenic/bucket_of_rocks_zps3b0dae72.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://i1113.photobucket.com/albums/k501/Psychojenic/bucket_of_rocks_zps3b0dae72.jpg" width="212" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">"Bucket of Rocks" shared with </span><br />
<span style="font-family: Verdana,sans-serif;">permission from <a href="http://chiotsrun.com/">Chiotsrun.com</a></span></td></tr>
</tbody></table>
<span style="font-family: Verdana,sans-serif;">What this civil rights movement needs is more
visibility. Not from parents or people like me, but from the
self-advocates themselves. That is why I share almost everything from <a href="http://cdss.ca/network/vatta/" target="_blank">VATTA blog</a> on our <a href="https://www.facebook.com/DownWitDat" target="_blank">Facebook page</a>. It is the people <i>with</i>
Down syndrome who need to create the language that describes them, it
will be the self-advocates that create the new rhetoric to promote
neurodiversity. <a href="http://davehingsburger.blogspot.ca/2013/07/the-faint-stirring-of-revolution.html" target="_blank">It is happening</a>. Slowly, seeds are germinating.</span></div>
<div style="text-align: left;">
<span style="font-family: Verdana,sans-serif;"><br /></span></div>
<div style="text-align: left;">
<span style="font-family: Verdana,sans-serif;">As
one of my children has Down syndrome, I've had to evaluate my
perceptions of disability over and over. How will this affect Wyatt?
How can we, as his parents, best guide him to adulthood and allow him
the freedom to advocate on his own behalf, whatever form that may take?
To reach "his full potential" on his own terms, not our abilist ones?
At what point do I stop "parenting" and become "paternalistic"? For
now, I guess, my job is to continue to expose the rhetoric and ableism
while nurturing the creation of a new construct, a new set of
definitions that not only include neurodiversity but were created <i>within</i>
that community. Despite how disheartening all this can be sometimes,
despite how physically and emotionally exhausting it is, I will continue
to prepare the soil of this revolution. My family will continue to
explore the world of Intellectual Disability and Developmental Delay the
only way we can, through the eyes of others, including our son. I must
persist with preparing this earth for my kids as they grow. I know,
one day, my son will communicate "<i>It's ok, Mom... I've got this</i>"
and I will happily put down my bucket and drink a Mojito in the shade.
Until that time however, there is much work to be done. All are welcome
to offer a little sweat equity; there is a lot of weeds to clear, soil
to turn and rocks to pick...</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://i1113.photobucket.com/albums/k501/Psychojenic/DWD/picking_rocks_out_of_the_garden_zps72e57fe6.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://i1113.photobucket.com/albums/k501/Psychojenic/DWD/picking_rocks_out_of_the_garden_zps72e57fe6.jpg" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">"Picking Rocks.." shared with permission from <a href="http://chiotsrun.com/">Chiotsrun.com</a></span></td></tr>
</tbody></table>
</div>
<div style="text-align: left;">
<span style="font-family: Verdana,sans-serif;">---------------------------</span></div>
<div style="text-align: left;">
<span style="font-family: Verdana,sans-serif;">Cherney, James L. "<a href="http://dsq-sds.org/article/view/1665/1606" target="_blank">The Rhetoric of Ableism</a>." <i>Disability Studies Quarterly</i> 31.3 (2011): <i>The Rhetoric of Ableism | Cherney | Disability Studies Quarterly</i>. The Society for Disability Studies. Web. 03 July 2013. </span><br />
<br />
<span style="font-family: Verdana,sans-serif;"><span style="font-family: Verdana,sans-serif;"><span style="font-family: Verdana,sans-serif;"><i>[Originally appeared on <a href="http://downwitdat.blogspot.com/">Down Wit Dat</a>] </i></span></span></span></div>
</div>
Psychojenichttp://www.blogger.com/profile/02936930614210195529noreply@blogger.com0tag:blogger.com,1999:blog-7460552419406225222.post-1067995908306073682013-06-21T01:57:00.000-04:002013-06-21T01:58:18.978-04:00I'm Removing My Prenatal Testing Halo<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;">I have had my moments of self-righteous judgement. Shocking, I know. I've strapped on my righteous halo in secret, just for comfort.</span></div>
<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;">In the early weeks after discovering LP has Trisomy 21 (Down syndrome), I spent time <a data-mce-href="http://kimchilatkes.com/2013/02/20/im-trying-to-be-a-better-beach-bum/" href="http://kimchilatkes.com/2013/02/20/im-trying-to-be-a-better-beach-bum/" title="I’m trying to be a better beach bum.">pontificating on life</a> and <a data-mce-href="http://kimchilatkes.com/2013/03/13/rainbows-and-unicorns-surfing-my-baby/" href="http://kimchilatkes.com/2013/03/13/rainbows-and-unicorns-surfing-my-baby/" title="Rainbows and Unicorns, Surfing, My Baby.">riding some emotional waves</a>. During that time, for a brief moment, despite all my reservations on prenatal testing, I wished we hadn't opted out. For a brief moment, I thought we should have terminated.</span></div>
<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;">For that brief moment, I felt a <a data-mce-href="http://kimchilatkes.com/2013/02/26/guilt-forgiveness-and-surrender/" href="http://kimchilatkes.com/2013/02/26/guilt-forgiveness-and-surrender/" title="Guilt, forgiveness, and surrender.">lifetime of guilt</a>.</span></div>
<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;">If my love had been more true, pure, strong, I would have never thought those things, right? How could I think that awful thought while my baby lay in bed beside me? I was ashamed to call myself a mother.</span></div>
<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;">Then, the pendulum swung the other way, and I felt a bit righteous. I was raw and scared. I needed to reaffirm my good (or at least not failed) motherhood. I needed to reaffirm my love for my baby because I was terrified that he sensed my moment of doubt. The world was telling me my baby wasn't worth it, and for a moment, I had let myself believe that lie. To make sure everyone knew I'd come around, I strapped on my we-never-tested-because-we-would-never-terminate-halo and plunged ahead.</span></div>
<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;">Let me tell you now, that was utter nonsense. I apologize. Deeply. I have removed my halo.</span></div>
<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;">I want to say some things to the women out there facing the difficult choices that line the road to motherhood. Yes, to <em>women</em>. In our still very patriarchal society, women bear an inordinate amount of shame and judgement for their reproductive choices. So yes, I am talking to you, sisters.</span></div>
<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;"><strong>To the mother who participated in prenatal testing</strong>, I stand by your choice to seek information. Maybe you just needed to know, to prepare. Maybe your doctor simply stated it was a matter of course. Maybe you even opted to get an amniocentesis or CVS test. I stand by you, because I refuse to judge the reasons behind your to need a for a more certain picture of the baby you carried in your body.</span></div>
<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;"><strong>To the mother who lost her baby after choosing CVS or amniocentesis</strong>, I stand by the best decision you could have made at the time. I can't know how it feels, but I can imagine how it must cut you to hear another person glibly talk about those tests without knowing the loss you've experienced. I refuse to judge the reasons you decided to do those tests.</span></div>
<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;"><strong>To the mother who never considered termination</strong>, I stand by your conviction and certainty. I don't know why termination was never an option for you. Maybe infertility. Maybe your faith. Maybe because you simply couldn't or wouldn't. I refuse to minimize you in any way; unwavering conviction is a powerful thing.</span></div>
<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;"><strong>To the mother who did consider termination after getting prenatal test results</strong>, I stand by your private, personal journey. Maybe you were scared. Maybe you had no support. Maybe you simply questioned the road ahead. I refuse to judge the inner workings of your choices.</span></div>
<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;"><strong>To the mother who terminated her pregnancy after getting prenatal test results</strong>, I stand by you simply as another woman and a mother. It pains me to think of my own baby being aborted, but he wasn't, and I will not impose my feelings on you. I have not walked in your shoes. I don't know what you were told about your baby, nor do I know your baby's prognosis. I don't know the circumstances of your life. I refuse to judge you and I will not shame you.</span></div>
<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;"><strong>To myself</strong>, the one who declined all testing, said she would never terminate and regretted my decision in a sad moment in time, I forgive you. I reaffirm my belief to go on with pregnancy without the information given through prenatal testing. I know now that neither my prenatal testing choices nor my doubts afterwards are indicators of my strength as a mother.</span></div>
<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div style="color: #333333; font-size: 13px; line-height: 19px;">
<span style="font-family: Trebuchet MS, sans-serif;">To my sisters, we may not always agree, but I refuse to judge you. Let's all remove our halos. We have all struggled and we are all imperfect beings. We can stand together.</span></div>
Anonymousnoreply@blogger.com1tag:blogger.com,1999:blog-7460552419406225222.post-6740243839491825312013-06-12T12:00:00.000-04:002013-10-29T12:09:08.882-04:00Don't be a Dick*<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Verdana,sans-serif;">Being a bit of a geek, it shouldn't be surprising that I adhere to <a href="http://knowyourmeme.com/memes/wheatons-law" target="_blank">Wheaton's Law</a>. For those that aren't familiar with this little bit of memedom, Wil Wheaton (of <a href="http://en.wikipedia.org/wiki/Star_Trek:_The_Next_Generation" target="_blank">Star Trek: TNG</a>
fame) in his keynote speech at the Penny Arcade Expo (PAX) in 2007,
stressed the importance of sportsmanship, in this case referring to
online gaming. It culminated into one phrase: "don't be a dick". Not
surprisingly, this little idiom has taken on a life of it's own; Wil's
Birthday, July 29, is now "<a href="http://wilwheaton.net/2012/07/happy-dont-be-a-dick-day/" target="_blank">Don't be a Dick Day</a>". It's premise is pretty simple; <i>don't be a dick</i>.
In the last little while, quite a few things have come across my path
that have me saying "what a dick!" and wishing that people would start
applying Wheaton's Law to and in the disability community. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://sharksplode.com/wp-content/uploads/2012/12/sharksplode-t-shirt-keep-calm-and-dont-be-a-dick-thumb.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://sharksplode.com/wp-content/uploads/2012/12/sharksplode-t-shirt-keep-calm-and-dont-be-a-dick-thumb.jpg" width="320" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">Wheaton's Law. There are shirts.</span></td></tr>
</tbody></table>
<span style="font-family: Verdana,sans-serif;">For example, service animals are becoming more common
and being used for many different things these days. However, you
would be surprised at the amount of discrimination that still occurs.
This story happened a few years ago in Toronto, where a <a href="http://www.thestar.com/news/gta/2011/09/14/blind_rowing_champ_turned_away_at_gas_station.html" target="_blank">medal winning athlete was denied entry into a gas station</a>
due to her seeing-eye dog. Not all service dogs are German Shepherds
or Labrador retrievers or even seeing-eye dogs for that matter; my
friend M. has a service dog, a darling pile of fluff named Edgar. He is
a miniature Yorkshire terrier and helps her with her symptoms of <a href="http://en.wikipedia.org/wiki/Posttraumatic_stress_disorder" target="_blank">Post Traumatic Stress Disorder</a>. Edgar is fully certified and although he doesn't wear a vest (he is too
small), M. carries all his certification with her everywhere that
they go.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">The other day, she went into a nail salon/spa
that she had frequented for years. While lying quietly on a table for a
facial treatment, she was accosted by a very hostile and threatening
woman. The woman bent down to speak to M. face to face and loudly
objected to Edgar's presence stating that he "would get the place shut
down by the health department". My friend, once she had regained her
composure (and been able to stave off symptoms, thanks to Edgar's
intervention), attempted to explain her service dog's role to the woman,
even going so far as to pull out his documentation. M attempted to show
his certification again a few minutes later and was greeted with more
ignorance, conversation bordering on verbal abuse and most sad of all,
silence from the shop's owners.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">My friend will never go
there again. What was once a place of peace, comfort and happy
memories for her and her daughters is no longer "safe" (for her or
Edgar). It pains me to hear this as this is not the first time that
this has happened to her. This year even. M. has been humiliated by
people demanding to know her reason for her PTSD and what service Edgar
could possibly provide. My friend is not about to discuss the horrific
physical, mental and sexual abuse that she endured at the hands of her
own parents, especially to complete strangers. Yet, people feel they
have the right to ask this of her, despite the documentation.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">So,
when it comes to service animals, don't be a dick. Not every service
animal is a large dog or even a dog, for that matter (I have seen pot
bellied pigs and small horses as well). You do not have the right to
demand an explanation other than the animal's certification. You also
don't get to pass judgement on what you believe is a proper application
of such an animal. Not every disability is visible as well; what may
not be apparent to you may be quite debilitating to another.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">I
don't consider myself to be a "mommy blogger" (although I do know quite
a few successful ones). I'm not confident enough to consider myself a
writer, so I tend to refer to myself as just a blogger. Before the
twins, I was was happy to prattle on about my garden and random things
that popped
up in my life [read: a forum to entertain my family and friends and
show my photography]. That changed with Wyatt's prenatal diagnosis and
the writing that came out of that which would eventually became Down Wit
Dat. As I found out new things, I shared them with my family and
friends. That group has grown over time; I've never claimed to be an
expert. I'm just another advocate (and not a "mommy advocate" either). </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">In
my travels, I talk to a lot of other bloggers. Some are very
successful, some are commercial and do this for money or promotion, some
blog for advocacy and some just do it for a love of writing. There's a
degree of camaraderie, sure, but at least in the "disability
communities", there is a lot of animosity as well. We all have a voice,
we all have struggles. We all have learning needs and different
personalities and let's face it, I for one am not everyone's cup of
tea. However, there's this trend to discourage and disparage "younger"
(less experienced, with younger aged children) bloggers and advocates
and it's kinda disturbing. I'm hearing "too angry" and "too young" and
"too inexperienced" and "too disrespectful" and a whole other bunch of
wacky stuff. I can't speak for anyone other than myself, but "too
angry" is not exactly what is happening over here at the Logan
Homestead. Even when I'm being particularly passionate about something,
I'm hardly angry to the point of uncontrollably shaking my fist to the
sky (I<i> have</i> been accused of that one, actually). I don't have the energy for that level of unbridled emotion, frankly.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Besides,
I'm Canadian. We don't do a lot of that here. We're more apt to write
a polite letter to our riding's Member of Parliament, to ask them to
consider submitting a well thought out and sober article of
legislation. When it comes to the blogosphere, we all have something to
offer, even if we all don't agree. I for one, want to hear the
experiences of those that have gone before. I want to hear what went
right and what went wrong. Not so that I can tell you that I think you
did things incorrectly, but so that I can learn from it and make my
son's experience better (and improve it even more for the kids that come
after him). </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">So, bloggers ("Mommy" or otherwise),
don't be dicks. Personal struggle is not a contest. No one wins in the
end for time served. There is no "rank", this is not the military. I
may not know exactly what year 15 looks like with a child with DS, but I
do know what I <i>want</i> it to look like. You probably don't know
what it is like with twins where only one of them has DS, either... just
as I don't know what it is like to be an adoptive parent or a same-sex
parent or any other kind of parent other than myself. We're all trying
to make a world that accepts those that are different than most as a
matter of course. When we waste our energy on each other needlessly, we
just look like, well, a bunch of dicks.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">My last stop
on this "Don't be a dick" train is person first language. I'm a big
believer in PFL and have been since I encountered it in 1995 in one of
my nursing classes. It's not rocket science: people are more than
their conditions. Mr Smith may have schizophrenia but he is more than
simply "a schizophrenic". Such reference is dehumanizing. Calling my
son a "Downs" or "Downy" or any other permutation, other than "he has
Down syndrome" is dehumanizing. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">The exception to
this lies with the self advocate. Through the words of a few bloggers
in the autism community that I respect greatly, I have gained an
understanding into the continued use of "autistic" as opposed to "person
with autism". As it was explained to me, by a person who <i>is</i>
autistic, it wires a person different; to remove the processing
disorder would remove a great part of the self. Although I would like
to disagree in theory, I respect their opinion. Those possessing the
characteristics in question get to determine the language used to
describe those characteristics.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Comparing Down syndrome to ASD is like comparing apples and pelicans anyway. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">The
current consensus of the self advocates in the Down syndrome community
is to use person first language and it is to that I will defer. So
please, don't be a dick. Down syndrome is not an adjective. The words
you choose to describe people shape the perceptions of those around
you. We cannot create a world where differences are accepted and even
celebrated if we denigrate people through the words we use to describe
them. It's not a matter of your "rights" to "free speech", it's a
matter of recognizing another's humanity.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">So there you
have it. When it comes to the world of "disability", invoke Wheaton's
Law. Don't be a dick. Make every day "don't be a dick day".</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Speaking as a someone who loves someone with a learning disorder, we already have enough of that to deal with.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">------</span><br />
<span style="font-family: Verdana,sans-serif;">*Unless your name is Richard.</span><br />
<br />
<span style="font-family: Verdana,sans-serif;"><span style="font-family: Verdana,sans-serif;"><span style="font-family: Verdana,sans-serif;"><i>[Originally appeared on <a href="http://downwitdat.blogspot.com/">Down Wit Dat</a>] </i></span></span></span></div>
Psychojenichttp://www.blogger.com/profile/02936930614210195529noreply@blogger.com0tag:blogger.com,1999:blog-7460552419406225222.post-81908705861270015272013-06-11T11:39:00.002-04:002013-06-13T15:13:35.243-04:00Call To Action: Frederick County Sheriff Department Accreditation Committee<div dir="ltr" style="text-align: left;" trbidi="on">
The Frederick County Sheriff's Department is up for an accreditation review with CALEA, a national law enforcement accreditation group. There has been a public call for letters and phone calls from the community. It is time to let Sheriff Jenkins know that we have not forgotten what happened to Ethan Saylor. Tell the committee what happened and let them know that we want justice for Ethan.<br /><br /><br />Commission on Accreditation for Law<br />Enforcement Agencies, Inc. (CALEA)<br />13575 Heathcote Boulevard Suite 320<br />Gainesville, Virginia, 20155<br /><br />Dear Assessment Team,<br /><br />In advance of your audit of the Frederick County Sheriff's Office, I write to highlight my concern regarding that office's handling of Robert Ethan Saylor's homicide at the hands of three off-duty Frederick County deputies.<br /><br />On January 12, 2013, Mr. Saylor re-entered a movie theater without purchasing another ticket for a showing of Zero Dark Thirty. Sheriff's deputies Lt. Scott Jewell, Sgt. Rich Rochford and Deputy First Class James Harris were moonlighting as mall security that night and were called as such to attend to the situation. The three attempted to forcibly remove Mr.Saylor from the theater; confusion ensued as the guards dragged Mr. Saylor out of his seat. Soon thereafter, Saylor's companion returned to the theater and pleaded with the guards to let her take Mr. Saylor home.<br /><br />The guards declined. Instead, they continued to apply force against Mr. Saylor, using three sets of handcuffs linked together to pin his arms behind his back. Mr. Saylor ended up face down on the ground, presumably where his larynx became crushed. Mr. Saylor then died of asphyxiation, all over the price of a movie ticket. <br /><br />Following this homicide, neither the sheriff nor the local prosecutor found any conflict of interest investigating the case, regardless of the fact that the security guards were also deputies of the investigating office. Instead, they kept the matter in the county instead of using outside resources. The locally run grand jury failed to indict the deputies of the use of excessive force. Instead they blamed Saylor's death on his Down syndrome rather than scrutinizing the actions of the three off-duty and seasoned deputies. <br /><br />Sheriff Jenkins has publicly commented on the problems of moonlighting officers. In the Maryland Community News Online Gazette, he was quoted as saying "“When [deputies] take an [enforcement] action on someone, they immediately fall back into law-enforcement status,” he said. “I’ve said all along that I don’t think law enforcement should be in competition with private security.” Despite his apparent concern about the ethics of such secondary work, Sheriff Jenkins still choose to not call for an independent investigation. <br /><br />The Frederick County Sheriff's Office's handling of Saylor's homicide calls into question the office's commitment to professional excellence. It is of grave concern that three off-duty deputies, including two of high rank, saw fit to manhandle a young man over the price of a movie ticket to the point of death. Of even further concern is Sheriff Jenkins's decision to keep the matter in house rather than declare a conflict of interest. Such action gives rise to the unfortunate appearance that the Frederick County Sheriff's Office was solely interested in protecting its three officers rather than engaging in a transparent investigation of Saylor's homicide. <br /><br />Thank you for your time and attention to this matter,<br /><br />[Your name goes here]<br /><br /></div>
Anonymoushttp://www.blogger.com/profile/09934296564253625199noreply@blogger.com4tag:blogger.com,1999:blog-7460552419406225222.post-75601526782059334172013-06-09T09:09:00.000-04:002013-06-10T10:38:35.716-04:00Call to Action: Va. Lt. Governor Candidate E. W. JacksonAccording to his book, <i>Ten Commandments to an Extraordinary Life</i>, the Republican candidate for Lt. Governor in VA, E.W. Jackson, believes that <a href="http://www.buzzfeed.com/andrewkaczynski/va-republican-lt-governor-candidate-said-birth-defects-were">"birth defects" are the result of sin</a>. <br />
<blockquote class="tr_bq">
<span class="userContent">"It is the principle of sin, rebellion against
God and His truth which has brought about birth defects and other
destructive natural occurrences." </span><br />
<span class="userContent"></span></blockquote>
<span class="userContent">After centuries <span class="text_exposed_show">of ignorance, we're still battling for basic human dignity. <br /> <br /> Tell E.W. Jackson that genetic diversity is not the result of sin. <br /> <br /> EMAIL<br /> info@jacksonforlg.com<br /> <br /> FOR MEDIA INQUIRIES<br /> press@jacksonforlg.com<br /> <br /> ADDRESS<br /> P.O.Box 15003<br /> Chesapeake, VA 23328<br /> <br /> PHONE<br /> 757-802-4246<br /> <br /> TWITTER: @Jackson4VA<br /> <br /> FACEBOOK: <a href="https://www.facebook.com/jacksonforlg" rel="nofollow" target="_blank">https://www.facebook.com/jacksonforlg</a></span></span>Down Syndrome Uprisinghttp://www.blogger.com/profile/14015434768396941866noreply@blogger.com0tag:blogger.com,1999:blog-7460552419406225222.post-84139268698345018582013-06-07T02:07:00.000-04:002013-06-14T16:38:24.719-04:00Potential, Disability, and Human Worth<div style="background-color: rgba(255, 255, 255, 0.882353); border: 0px; font-size: 13px; line-height: 22.09375px; margin-bottom: 14px; margin-top: 14px; outline: 0px; padding: 0px;">
<span style="font-family: Trebuchet MS, sans-serif;">So what is potential? Is it a bottle that we fill, predestined to be a certain size at birth? Is it a balloon that stretches and deflates according to our circumstances? What, specifically, are we discussing here? Potential for <em style="border: 0px; line-height: inherit; margin: 0px; outline: 0px; padding: 0px;">what</em><em style="border: 0px; line-height: inherit; margin: 0px; outline: 0px; padding: 0px;">? </em>Happiness? Wealth? Influence? Raw ability? What kind of ability?</span></div>
<div style="background-color: rgba(255, 255, 255, 0.882353); border: 0px; font-size: 13px; line-height: 22.09375px; margin-bottom: 14px; margin-top: 14px; outline: 0px; padding: 0px;">
<span style="font-family: Trebuchet MS, sans-serif;">I hear a lot of talk about potential. <em style="border: 0px; line-height: inherit; margin: 0px; outline: 0px; padding: 0px;">I want my baby to develop to his full potential</em>. One of the reasons I was anxious about LP’s sleep apnea and his thyroid was that both conditions, left untreated, carry the very real possibility of causing permanent brain damage. I’ll be honest here and admit that one of the hardest parts about hearing the words <em style="border: 0px; line-height: inherit; margin: 0px; outline: 0px; padding: 0px;">Down syndrome</em> was the idea of my child having an intellectual disability. So the idea of him having somehow <em style="border: 0px; line-height: inherit; margin: 0px; outline: 0px; padding: 0px;">more</em> intellectual disability due to untreated health conditions freaked me out. The future, his potential, loomed out in front of me, constricting, because I worried that he was losing something he <em style="border: 0px; line-height: inherit; margin: 0px; outline: 0px; padding: 0px;">could have had</em>. Lost potential.</span></div>
<div style="background-color: rgba(255, 255, 255, 0.882353); border: 0px; font-size: 13px; line-height: 22.09375px; margin-bottom: 14px; margin-top: 14px; outline: 0px; padding: 0px;">
<span style="font-family: Trebuchet MS, sans-serif;">I was wrong.</span></div>
<div style="background-color: rgba(255, 255, 255, 0.882353); border: 0px; font-size: 13px; line-height: 22.09375px; margin-bottom: 14px; margin-top: 14px; outline: 0px; padding: 0px;">
<span style="font-family: Trebuchet MS, sans-serif;">We live in an ableist world that defines potential against arbitrary values that change over time and context. A person in a wheelchair is only disabled because the majority of the world uses two legs to get around. A person who is intellectually disabled is only disabled because the majority of our society values certain cognitive skills and learning styles over others. A person who is blind is only disabled because the majority of society relies heavily on their sight. What modern day societies view as important is how we create our society. Our roads, schools, buildings, are all created with this in mind.</span></div>
<div style="background-color: rgba(255, 255, 255, 0.882353); border: 0px; font-size: 13px; line-height: 22.09375px; margin-bottom: 14px; margin-top: 14px; outline: 0px; padding: 0px;">
<span style="font-family: Trebuchet MS, sans-serif;">Judging another human’s potential through the lens of their disability is not only a futile exercise, but it creates a hierarchy of worth.</span></div>
<div style="background-color: rgba(255, 255, 255, 0.882353); border: 0px; font-size: 13px; line-height: 22.09375px; margin-bottom: 14px; margin-top: 14px; outline: 0px; padding: 0px;">
<span style="font-family: Trebuchet MS, sans-serif;"><em style="border: 0px; line-height: inherit; margin: 0px; outline: 0px; padding: 0px;">It is dangerous</em>.</span></div>
<div style="background-color: rgba(255, 255, 255, 0.882353); border: 0px; font-size: 13px; line-height: 22.09375px; margin-bottom: 14px; margin-top: 14px; outline: 0px; padding: 0px;">
<span style="font-family: Trebuchet MS, sans-serif;">This is why new prenatal tests are a vehicle for <a href="http://spectator.org/archives/2013/05/23/eugenic-abortion-20/2" style="border-bottom-color: rgb(0, 0, 0); border-bottom-style: dotted; border-width: 0px 0px 1px; color: black; font-weight: 600; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none;" target="_blank">eugenics</a>, under the guise of medical care. This is why <a href="http://kimchilatkes.com/2013/04/10/why-i-cant-let-it-go-justiceforethan/" style="border-bottom-color: rgb(0, 0, 0); border-bottom-style: dotted; border-width: 0px 0px 1px; color: black; font-weight: 600; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none;" title="Why I can’t let it go: #JusticeForEthan">Ethan Saylor’s death</a> was so tragically uncontroversial. He was judged as already so limited in his potential due to his genetic makeup that his death was worth less scrutiny than another’s. This is why parents fight to get their children included in the public school system; children with disabilities are seen as having less potential, less worth, just <a href="http://http//www.withalittlemoxie.com/blog/2013/02/12/the-post-in-which-i-am-a-defenceless-turtle-at-the-ieptransition-meeting/" style="border-bottom-color: rgb(0, 0, 0); border-bottom-style: dotted; border-width: 0px 0px 1px; color: black; font-weight: 600; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none;" target="_blank">less</a>. Adults <a href="http://www.wbez.org/news/labor-laws-allow-workers-disabilities-earn-less-minimum-wage-107389" style="border-bottom-color: rgb(0, 0, 0); border-bottom-style: dotted; border-width: 0px 0px 1px; color: black; font-weight: 600; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none;" target="_blank">struggle</a> against an employment system that believes their work is worth less than that of their non-disabled counterparts.</span></div>
<div style="background-color: rgba(255, 255, 255, 0.882353); border: 0px; font-size: 13px; line-height: 22.09375px; margin-bottom: 14px; margin-top: 14px; outline: 0px; padding: 0px;">
<span style="font-family: Trebuchet MS, sans-serif;">If most of us had one arm and were not neurologically wired to do math, the world would have developed to favor those characteristics. Disability and a person’s potential are defined by the world’s ability to interact meaningfully with them, and not the other way around. Potential is simply a mirror, reflecting the world’s biases, but having nothing to do with an individual himself.</span></div>
<div style="background-color: rgba(255, 255, 255, 0.882353); border: 0px; font-size: 13px; line-height: 22.09375px; margin-bottom: 14px; margin-top: 14px; outline: 0px; padding: 0px;">
<span style="font-family: Trebuchet MS, sans-serif;">So let’s stop drawing lines. We are all disabled, we are all abled. We are all different, we are all typical. Let’s include each life into the web our collective potential, simply because we value human life. No one is born with a smaller bottle or balloon. Potential is potential, simply by living, no matter how we are born or how our life’s events unfold. We are all infinite by our very existence.</span></div>
Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7460552419406225222.post-1450384123965539562013-05-27T08:39:00.000-04:002013-10-29T12:09:25.185-04:00Normal<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Verdana,sans-serif;">It's been well over a month since <a href="http://downwitdat.blogspot.ca/2013/04/prelude.html">Wyatt's surgery</a>. I am starting to
feel like myself again only now, after two sun-filled weekends at
home. According to the experts, this is a 'normal' reaction after an
extended period of stress, after a perceived threat (in this case, to a
loved one). Despite my profession, I have to keep reminding myself that
a low period after a time of intense stress is to be expected. It's a
natural reaction, especially when you consider that my [often
precarious] work-life balance was tipped dramatically in one direction
then quickly pushed back again. After the surgery, I was going along at a
pretty good pace too, or so I thought... until I found myself in an
empty room, unsure what to do, straining to hear anything over the
silence and my own breathing. The sudden absence of a <i>presence, </i>one that had haunted us for over two years<i>,</i>
left a void that I had to fill. Over time I did that. I've made it my
own. After spending time with my family, after spending time in the
garden, I feel better. I feel more like myself; our family life has
cautiously settled back into its own rhythm. Wyatt's progress has been a
big part of that: his rapid healing, his adaptation, his overcoming of
things like sore muscles and wired ribs that feel weird has helped us
all maintain some clarity as we assume our 'new normal'. Our post
surgical normal. Our brave new world.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">The idea of
"normal" seems to have became a theme in the time since my last post. I
swear, I'm running across examples and discussions about this all over
the place. This concept of normal vs broken seems to be a real <i>thing</i>
in the DS community (if you can even call it a community any more).
When you think about it, it's no wonder really; after thousands of years
of looking at those with Down syndrome and those with intellectual
disabilities as "less than" or "broken", modern society is struggling to
give these ideas up. These concepts are familiar and comforting, like
an old blanket. However, it is time to evolve and "<i>put away childish things</i>", as it were. People with intellectual disabilities are here, have value and worth. Different. Equal. Not separate.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">I will agree that the extra chromosome gives a lot of unknowns, a lot of
variables. My first, "typical" child was a <i><a href="http://www.amazon.ca/What-Expect-When-Youre-Expecting/dp/0761148574">"What to Expect..."</a></i> baby.
Every month there would be a
new list of goals, of things he "should be" doing, things he "might be"
doing and things that would be coming up soon. Spoiler: he didn't
follow the lists. Quinn was barely starting to walk at 18 months, but
had the vocabulary of a child <i>much</i> older. He didn't play with toys
conventionally either, preferring to figure out how they worked and then
make some kind of art statement out of them. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">What
we've realized with Wyatt is that development is non-linear. It is
fluid. He does
not progress along a predictable path towards a readily recognizable
outcome. It may take him months to finally realize that tapping his
spread palm to his chin means "mother", but in a short period of time
can polish off a few skills that took his typical siblings months to
reconcile. Instead of sitting still while he recovered from open heart
surgery as he could no longer crawl, he instead adapted and learned to
"scoot'. Holy cow is that kid <i>fast</i>.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Even
amongst children with DS, there are no set rules. Not so long ago,
pediatricians everywhere adopted a series of Down syndrome growth
charts, which for chart/graph minded people like pediatricians, seemed
to be a good thing. It helped everyone to get over the idea that kids
with DS were "poorly" due to their (generally) smaller stature when
compared to their more typical peers. These charts are now falling by
the way side as not every kid, especially the ones with DS, adheres to a
regular growth pattern. None of my kids have, that's for sure. Growth
charts are a touchy subject with me anyway as I am the Mom of two
preemies. I've found myself shifting from foot to foot with irritation
at a number of appointments, as I watch my two obviously thriving
children not "measuring up" to what some chart has to say about "healthy
growth". </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Wyatt, even with his (previously) busted
heart, is not broken or deficient. He does look slightly different than
other children I guess. Most people that see him or his pictures want
to nibble him, so I can only assume that he's a pretty good looking kid
(which, as his mother <i>I suspected all along</i>). None of my three
look exactly the same... Quinn is currently in a bag-of-antlers stage,
with stunning blue eyes that make you want to fall in and drown. He's
also in that stage where some of his teeth are loose, some are sticking
out at odd angles and the new ones look like they belong to a horse.
Zoe has my olive complexion. She has straight hair--which is a sharp
contrast to both her brothers and their blonde curls--and soft brown
eyes that can go from molten chocolate to granite in seconds. She can
also do bridged lateral push ups between the couch and the coffee
table. Genetics are a wonderful thing. However, due to some
physiological differences, Wyatt is considered to have a "visual
disability". It is "visual", as you can see it and therefore--if you
talk to a large (ignorant) percentage of the population--get to pass
judgement instantly on his abilities by just looking at him. A casual
glance at his twin would not reveal that she has a lisp or delays in her
speech or hand tremors that often occur with prematurity. However,
Wyatt, due to the shape of his eyes and his button nose, perhaps the way
he holds his mouth or curls his toes, is immediately "recognizable".</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">There
are no delusions about the future. Wyatt may develop some behavioral
problems, that is true. Having been in Mental Health for years, the
place where people with "outbursts" of all shapes and sizes end up, I've
had my fair share of experience in this area. I also know how many of
these come about and how easily many instances can be both exacerbated
or prevented. He may not face this, either. He may speak 'clearly' by
conventional standards, or not. Perhaps he will not speak at all.
Regardless, he will be able to communicate his wants, needs and desires
quite well. You will need to possess the willingness to listen. It
doesn't take much really, other than an attention span and patience that
lasts more than a beat or two. I also won't know until they are grown
up whether any of them will have
schizophrenia (as I have two cousins with this), will suffer from
depression, have diabetes or cancer. There are variables with all my
kids, just like your genetic code will dictate whether your kids will
develop the issues that occur in <i>your</i> family. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">I
guess, in my mind, that's what really set the "This is Down syndrome"
list of illnesses and disorders away for good. Yes, my kid does go to a
lot of doctors. So do I, when you think about it... and I consider
myself to be a reasonably healthy person. To put it another way, <a href="http://www.downwitdat.blogspot.ca/2011/10/conditions-concurrent-with-down.html">here is a list of things</a> that can "go wrong" if you happen to have <a href="http://www.downwitdat.blogspot.ca/2011/10/conditions-concurrent-with-down.html"><i>Trisomy 21</i></a>. Here's a list of things that can "go wrong" if you are <i>human</i>:</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;"><br /></span>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><a href="http://d.gr-assets.com/books/1178165940l/766984.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://d.gr-assets.com/books/1178165940l/766984.jpg" width="247" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;">It's a big list...</span></td><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><br /></span></td><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana,sans-serif;"><br /></span></td></tr>
</tbody></table>
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;"><i>Homo sapiens</i> are a diverse bunch,
full of colours, shapes, sizes and bodies that ultimately break down, no
matter how much we exercise or how organic our produce is. Or how many
chromosomes we may or may not have. We are all broken, if that is the
criteria you use to determine worth.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">I think the sooner
that we as a species, realize that all of us have equal value, the
sooner we will stop hearing stories like this one, where <a href="http://www.thesun.co.uk/sol/homepage/news/4936739/hotel-banned-kids-with-down-syndrome.html">a hotel in Spain refused to allow children with Down syndrome</a>
as they would be "disruptive". We'll stop perpetuating myths that our
kids with intellectual disabilities have an unholy attraction to water
or wandering; kids without DS can drown and bolt without warning just
as easily. I know this, I was <i>that kid</i>. I would routinely
wander off, especially in public. My mother can tell you many stories
about how I would hide in clothing racks or just get lost, period. My
mini-me daughter is shaping up to be the same too, which is going to
mean a lot more grey hair in the future (assuming it doesn't just give
up and fall out). Everybody wanders and gets confused by their
surroundings from time to time. If you don't believe me, watch a
security camera in a hospital for a length of time. Trust me, <i>I've seen some things</i>...</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Normal,
as they say, is simply a setting on the washing machine. When it comes
to people, there really is no such thing. We're all bags of quirks and
"illness" and here for a very limited time. That includes our members
with developmental delays and intellectual disabilities. There is no
"less than". There is no broken.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">There is life: messy, glorious and mostly mercurial.</span><br />
<br />
<span style="font-family: Verdana,sans-serif;"><span style="font-family: Verdana,sans-serif;"><span style="font-family: Verdana,sans-serif;"><i>[Originally appeared on <a href="http://downwitdat.blogspot.com/">Down Wit Dat</a>] </i></span></span></span></div>
Psychojenichttp://www.blogger.com/profile/02936930614210195529noreply@blogger.com0tag:blogger.com,1999:blog-7460552419406225222.post-36892459791886875082013-05-07T21:34:00.000-04:002013-06-14T09:56:13.189-04:00An Open Letter to Congressman Van Hollen regarding the Robert Ethan Saylor Case<div dir="ltr" style="text-align: left;" trbidi="on">
<br />
<div class="p1">
<span style="font-family: "Courier New",Courier,monospace;">May 7, 2013</span></div>
<div class="p2">
<span style="font-family: "Courier New",Courier,monospace;"><br /></span></div>
<div class="p1">
<span style="font-family: "Courier New",Courier,monospace;">Dear Congressman Van Hollen,</span></div>
<div class="p2">
<span style="font-family: "Courier New",Courier,monospace;"><br /></span></div>
<div class="p1">
<span style="font-family: "Courier New",Courier,monospace;">The Down Syndrome Collective, a group of over 2,000 advocates for the full inclusion and human rights of people with Down syndrome, urges you to secure an independent investigation into Robert Ethan Saylor's homicide. Nearly 4 months ago, Robert Ethan Saylor died at the hands of off-duty Frederick County Sheriff's deputies Lt. Scott Jewell, Sgt. Rich Rochford and Deputy First Class James Harris. The local law enforcement community in Frederick has not brought justice to the Saylor family. </span></div>
<div class="p2">
<span style="font-family: "Courier New",Courier,monospace;"><br /></span></div>
<div class="p1">
<span style="font-family: "Courier New",Courier,monospace;">The refusal of the local State’s Attorney, Charlie Smith, to prosecute this homicide—instead using the veil of grand jury proceedings—gives rise to the unfortunate appearance of local law enforcement protecting its own. Smith’s statement following the grand jury hearing demonstrates his eagerness to adopt a narrative exonerating his law enforcement colleagues at the expense of a young homicide victim. By inaccurately stating that Saylor was "compromised by his Down's Syndrome [sic]," Smith has shifted the blame for Saylor's death onto his genetic condition rather than the improper restraint technique employed against him. Saylor was left face down and died of positional asphyxia, a known risk to all people. Most importantly, it remains unclear why Saylor was restrained at all over the cost of a movie ticket. </span></div>
<div class="p2">
<span style="font-family: "Courier New",Courier,monospace;"><br /></span></div>
<div class="p1">
<span style="font-family: "Courier New",Courier,monospace;">Almost exactly two years ago, you honored the 20th anniversary of the Americans with Disabilities Act, acknowledging the need for such legislation because “Americans with disabilities were too often denied the opportunity to fully participate and integrate into our society due to intolerance and unfair stereotypes.” Allowing blame for Saylor's death to be falsely placed on his genetic condition is an example of the same intolerance and unfair stereotyping you denounced. Only an independent investigation can reaffirm Saylor's equal rights as a human being.</span></div>
<div class="p2">
<span style="font-family: "Courier New",Courier,monospace;"><br /></span></div>
<div class="p1">
<span style="font-family: "Courier New",Courier,monospace;">Underscoring the need for an independent investigation is the revelation by local media that Saylor suffered a fracture to his throat, with bruising indicating he was still alive at the time of the injury. <a href="http://your4state.com/fulltext/?nxd_id=306392"><span class="s1">The article goes on to report</span></a>, “Experts say it's hard to know how it happened without an investigative report to show what came into contact with Saylor's throat.” Therefore, an independent investigation is the first step towards ensuring justice for the Saylor family.</span></div>
<div class="p2">
<span style="font-family: "Courier New",Courier,monospace;"><br /></span></div>
<div class="p1">
<span style="font-family: "Courier New",Courier,monospace;">We ask you to hold the Frederick County law enforcement community to a higher standard of conduct. Without your action, an unarmed man will have died in Maryland's 8th district over the price of a movie ticket without so much as a meaningful investigation. Please reaffirm the right of every person in Maryland to live. Help secure an impartial investigation into Robert Ethan Saylor’s homicide.</span></div>
<div class="p2">
<span style="font-family: "Courier New",Courier,monospace;"><br /></span></div>
<div class="p1">
<span style="font-family: "Courier New",Courier,monospace;">Sincerely, </span></div>
<div class="p2">
<span style="font-family: "Courier New",Courier,monospace;"><br /></span></div>
<div class="p1">
<span style="font-family: "Courier New",Courier,monospace;">The Down Syndrome Collective</span></div>
</div>
Down Syndrome Uprisinghttp://www.blogger.com/profile/14015434768396941866noreply@blogger.com1tag:blogger.com,1999:blog-7460552419406225222.post-68324807658361772602013-05-01T00:05:00.000-04:002013-05-01T00:09:06.455-04:00Down Syndrome Uprising's Advocacy Blog Symposium<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: "Courier New",Courier,monospace;">Before work, after the dishes, in the doctor's office, when the kids are sleeping, at the hospital, hiding in the linen closet, at a traffic stop - What Does Your Ever Day Advocacy Look Like?</span><br />
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<span style="font-family: "Courier New",Courier,monospace;"><span class="userContent">Do you change laws, minds, or<span class="text_exposed_show"> the world?</span></span></span><br />
<span style="font-family: "Courier New",Courier,monospace;"><span class="userContent"><span class="text_exposed_show"> </span></span><br />Advocacy and activism mean different things to different people. For two weeks, Down Syndrome Uprising will be holding a blog symposium to celebrate everyday advocacy in all its forms. <br /><br />Add your Down syndrome advocacy posts to the "linky" below and read some excellent posts from all over the world.</span><br />
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<span style="font-family: "Courier New",Courier,monospace;">This Blog Symposium brought to you by:</span><br />
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<span style="font-size: x-large;"><span style="font-family: "Courier New",Courier,monospace;"><b><a href="http://downsyndromeuprising.blogspot.com/" target="_blank">Down Syndrome Uprising</a></b></span></span></div>
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<span style="font-family: "Courier New",Courier,monospace;"><a href="http://downsyndromeuprising.blogspot.com/">Add your Advocacy post</a> now!</span></div>
<br />
<div style="text-align: center;">
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<script src="http://www.linkytools.com/thumbnail_linky_include.aspx?id=194832" type="text/javascript"></script>
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<span style="font-family: "Courier New",Courier,monospace;"> </span><br />
<span style="font-family: "Courier New",Courier,monospace;">Here is the code source to copy and paste to produce the return textlink on your blog. If you require assistance, please contact <a href="mailto:downsyndromeuprising@gmail.com"><b>us here</b></a><b>.</b></span><br />
<span style="font-family: "Courier New",Courier,monospace;"></span><br />
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<span style="font-family: "Courier New",Courier,monospace;"><div style="text-align: center;"><br /><span style="font-family: &quot;Courier New&quot;,Courier,monospace;">This post is part of a Blog Symposium brought to you by:</span><br /><br /><br /><br /><span style="font-size: x-large;"><span style="font-family: &quot;Courier New&quot;,Courier,monospace;"><b><a href="http://downsyndromeuprising.blogspot.com/" target="_blank">Down Syndrome Uprising</a></b></span></span></div><br /><div style="text-align: center;"><br /><br /><br /><span style="font-family: &quot;Courier New&quot;,Courier,monospace;"><a href="http://downsyndromeuprising.blogspot.com/">Add your Advocacy post</a> now!</span></div></span></div>
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Down Syndrome Uprisinghttp://www.blogger.com/profile/14015434768396941866noreply@blogger.com0tag:blogger.com,1999:blog-7460552419406225222.post-3838721766196362502013-04-30T23:59:00.000-04:002013-05-02T14:25:01.813-04:00Press Release - Activists Mobilize to Demand Justice for Robert ‘Ethan’ Saylor <h3 class="post-title entry-title" itemprop="name">
<span style="font-family: "Courier New",Courier,monospace; font-size: large;">For Immediate Release
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<span style="font-family: "Courier New",Courier,monospace;">
May 1, 2013<br /><br />
<b>Activists Mobilize to Demand Justice for Robert ‘Ethan’ Saylor </b><br /><br />
Fredrick, MD — <a href="http://downsyndromeuprising.blogspot.com/" target="_blank">Down Syndrome Uprising (DSU)</a>
and T21 Brigade have joined forces this week to call on Maryland’s
Governor Martin O’Malley and Attorney General Douglas F. Gansler, to
demand an independent investigation into the homicide of Robert ‘Ethan’
Saylor that occurred on January 12, 2013. <br /><br />
Citing the failure of the local State’s Attorney Charlie Smith to
prosecute the homicide of Mr. Saylor, activists express concern over the
possibility of local law enforcement protecting its own. Smith
presented the grand jury with information about the case derived from an
investigation conducted by the same agency that employs the police
officers involved in Mr. Saylor's death. <br /><br />
Smith’s statement, following a grand jury hearing, that Saylor was
"compromised by his Down's Syndrome [sic]," shifted the blame for
Saylor's death onto his genetic condition rather than the improper
restraint technique used on him after he refused to leave Regal Cinemas
Westview Stadium 16 in Frederick City, Maryland once the movie ended. 26
year old Saylor was restrained face down with his arms behind his back
causing him to suffer positional asphyxia. His death was ruled a
homicide by the medical examiner. <br /><br />
Down Syndrome Uprising (DSU) and T21 Brigade, two grassroots activist
groups, are working in tandem as The Down Syndrome Collective to redress
the violation of Ethan Saylor’s civil rights that caused his death.
“What has happened to date in investigating how a man died alone, crying
out for help on the floor of a movie theater has been a sham. Only an
independent investigation can honestly answer the manner of his death”
says Taina Karru-Olsen, from DSU.<br /><br />
Jennifer Campbell of T21 Brigade explains, “Parent advocates have joined
together seeking justice. We are keenly aware that Ethan Saylor could
be any of our children, and are demanding an investigation that does not
blame Down syndrome for a homicide.”<br /><br />
<b>About The Down Syndrome Collective, T21 Brigade, and Down Syndrome Uprising</b><br /><br />
<b>The Down Syndrome Collective</b> is comprised of about 2000 members
from both DSU and T21 Brigade, working to demand equal human rights for
people with Down syndrome. <br /><br />
Established in 2009 as the Oz Squad, <b>T21 Brigade</b> is responsible
for the removal or retraction of offensive material related to Down
syndrome from a variety of online and print sources. <br />
<a href="https://www.facebook.com/pages/T21-Brigade/233641746774249">T21 Brigade Facebook page</a> <br />
<a href="http://t21brigade.blogspot.com/">T21 Brigade Blog</a> <br /><br />
<b>Down Syndrome Uprising (DSU)</b> has over 1,000 members and is a
grassroots online activism initiative that serves as a communication hub
for a unified, global community of Down syndrome activists. Formed in
January, 2013, DSU is organized by six mothers of children with Down
syndrome living in four countries. <br />
Facebook page: <a href="https://www.facebook.com/DownSyndromeUprising" target="_blank">(https://www.facebook.com/DownSyndromeUprising)</a><br />
Blog <a href="http://downsyndromeuprising.blogspot.com/" target="_blank">(http://downsyndromeuprising.blogspot.com/)</a><br /><br />
<b>Media Inquiries</b><br /><br />
Sandra Lynn <br />
T21 Brigade <br />
(518) 496-6932 <br />
ds.mama at yahoo dot com<br /><br />
Taina Karru-Olsen<br />
Down Syndrome Uprising <br />
(425) 246-4530<br />
Downsyndromeuprising at outlook dot com
</span>Down Syndrome Uprisinghttp://www.blogger.com/profile/14015434768396941866noreply@blogger.com0tag:blogger.com,1999:blog-7460552419406225222.post-30443721179336105592013-04-24T20:13:00.000-04:002013-04-24T20:13:17.516-04:00Concerned parent writes NDSS and NDSC
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<span style="background-color: white; color: #444444; font-size: 15px; line-height: 21px;"><span style="font-family: Courier New, Courier, monospace;">This letter was sent to us by a concerned dad. It follows up on a question he asked during the NDSS, NDSC and FRIENDS Town Hall call on Tuesday. We think he makes some excellent points. We hope that NDSS and NDSC read this letter carefully.</span></span><span style="background-color: white; color: #444444; font-family: Calibri, sans-serif; font-size: 15px; line-height: 21px;"> </span></div>
<div class="normal">
<br /></div>
<div class="normal">
<br /></div>
<div class="normal">
<span style="font-family: Courier New, Courier, monospace;"><span style="background-color: white; color: #222222; line-height: 115%;">Dear Mr.
Colman and Ms. Goodman,</span><o:p></o:p></span></div>
<div class="normal">
<span style="font-family: Courier New, Courier, monospace;"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; color: #222222; line-height: 115%;"><br /></span></span></div>
<div class="normal">
<span style="font-family: Courier New, Courier, monospace;"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; color: #222222; line-height: 115%;">I write to
follow up on yesterday's town hall conference call. First, I want to thank you for hosting the
event. I appreciate the effort at
community outreach. </span><o:p></o:p></span></div>
<div class="normal">
<br /></div>
<div class="normal">
<span style="font-family: Courier New, Courier, monospace;"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; color: #222222; line-height: 115%;">At the
meeting, I expressed my view that Maryland state officials should be the focus
of our demand for an independent investigation rather than the federal
government. Today I wish to follow up on
that topic.</span><o:p></o:p></span></div>
<div class="normal">
<br /></div>
<div class="normal">
<span style="font-family: Courier New, Courier, monospace;"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; color: #222222; line-height: 115%;">As we
discussed, it is encouraging that the United States Department of Justice
("DOJ") has reached out to your organizations. Like you, I remain hopeful that someone
inside the DOJ will initiate an impartial investigation of the Saylor homicide
free of the personal entanglements that derailed the matter at the local level.</span><o:p></o:p></span></div>
<div class="normal">
<span style="font-family: Courier New, Courier, monospace;"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; color: #222222; line-height: 115%;">I am,
however, concerned about over-reliance on federal action. To begin, as we discussed, the federal actors
you are in touch with have relatively narrow mandates limited to civil rights,
disability rights, and overlap between the two.
Yet for the reasons we discussed, this case---while presenting a fairly
clear-cut case of excessive force---may not reflect the willful deprivation of
Mr. Saylor's rights due to his status as a legally protected minority. Similarly, I am concerned that a claim that
the off-duty deputies violated Mr. Saylor's civil rights may be complicated by
the fact that the men were acting in a private capacity on the night in
question. </span><o:p></o:p></span></div>
<div class="normal">
<br /></div>
<div class="normal">
<span style="font-family: Courier New, Courier, monospace;"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; color: #222222; line-height: 115%;">More
fundamentally, I am concerned that over-reliance on "civil" and
"disability" rights to establish the guards' culpability undermines
the core narrative that our community should adopt and repeat: that because
Ethan Saylor had Down syndrome, the off-duty deputies did not view him as
worthy of basic human dignity, and they thus overreacted to an innocuous
situation by killing him over the price of a movie ticket. Viewed from this perspective, Mr. Saylor's
death presents a violation of the basic <i>human</i>
right to life. By relying on the
narrower statutory rights enforced by the DOJ, I fear that our community will
lend credence to the off-duty deputies' narrative of innocence: that
miscommunications and/or health problems stemming from Mr. Saylor's Down
syndrome are to blame for the homicide rather than their own misconduct. </span><o:p></o:p></span></div>
<div class="normal">
<br /></div>
<div class="normal">
<span style="font-family: Courier New, Courier, monospace;"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; color: #222222; line-height: 115%;">For these
reasons, I believe Mr. Saylor's case is best cast as a violation of state
criminal law, and that it falls primarily on the higher Maryland authorities to
see that justice is served. On this
point, the Trayvon Martin case from Florida serves as a useful point of
comparison. There, as here, the killer
overreacted to an innocuous situation based on his personal prejudices against
the victim, <i>i.e.</i>, that Mr. Martin (a
young black man) was not worthy of basic human respect. Similarly, there, as here, local law
enforcement placed its stamp of approval on the killer's misconduct by failing
to seek criminal justice. </span><o:p></o:p></span></div>
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<br /></div>
<div class="normal">
<span style="font-family: Courier New, Courier, monospace;"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; color: #222222; line-height: 115%;">There,
however, unlike here, a massive outpouring of public outrage---fueled in large
part by national advocacy groups such as the NAACP---forced the governor's hand
to appoint a special prosecutor, who ultimately brought criminal charges
against George Zimmerman. </span><o:p></o:p></span></div>
<div class="normal">
<br /></div>
<div class="normal">
<span style="font-family: Courier New, Courier, monospace;"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; color: #222222; line-height: 115%;">That, I
believe, is where your organizations come in.
Governors and attorneys general are inherently political creatures, a
circumstance that cuts in both directions.
On the one hand, politicians frequently have their eyes on re-election
and/or higher office, and are thus reluctant to ruffle the feathers of law
enforcement, whose support they believe they will need to advance their own
careers. On the other hand, politicians
will respond to public pressure when they believe it is in their best interest
to do so. </span><o:p></o:p></span></div>
<div class="normal">
<br /></div>
<div class="normal">
<span style="font-family: Courier New, Courier, monospace;"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; color: #222222; line-height: 115%;">As the
Trayvon Martin case demonstrates, large national advocacy groups such as yours
have the prestige, platform, and resources to galvanize their constituencies
(and others similarly situated) to compel action at the high levels of state
government. I thus urge you to focus
your attention on the Governor and Attorney General of Maryland, as well as any
other appropriate high-level officials, to launch an impartial investigation of
Ethan Saylor's homicide in addition to any action that the federal government
may (or may not) take.</span><o:p></o:p></span></div>
<div class="normal">
<br /></div>
<div class="normal">
<span style="font-family: Courier New, Courier, monospace;"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; color: #222222; line-height: 115%;">Yesterday
you reaffirmed your commitment to demanding an impartial investigation. I take you at your word. Please do everything within your
power---including contacting the appropriate authorities, organizing marches
and rallies, coordinating social media efforts, and so on---to grab the
attention of the appropriate state officials before it's too late. I believe this action is a moral imperative
of your respective offices, and that only you have the ability to coordinate
the large-scale efforts necessary to ensure Justice for Ethan. </span><o:p></o:p></span></div>
<div class="normal">
<br /></div>
<div class="normal">
<span style="background-color: white; background-position: initial initial; background-repeat: initial initial; color: #222222; line-height: 115%;"><span style="font-family: Courier New, Courier, monospace;">Please
feel free to contact me any time regarding this matter. Thank you.</span></span><o:p></o:p></div>
<!--EndFragment-->Down Syndrome Uprisinghttp://www.blogger.com/profile/14015434768396941866noreply@blogger.com2tag:blogger.com,1999:blog-7460552419406225222.post-68259913790096931562013-04-22T10:45:00.000-04:002013-10-29T12:09:40.710-04:00A Step Backwards for Down syndrome Advocacy <div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Verdana,sans-serif;">I've been out of the loop for a bit. As most of you know, recently my son had <a href="http://downwitdat.blogspot.ca/2013/04/prelude.html">open heart surgery</a> to repair his AVSD. I haven't been around in the online scene as of late which has been troubling me.</span>
<span style="font-family: Verdana,sans-serif;"></span><br />
<span style="font-family: Verdana,sans-serif;"><br />
What's troubled me more is a current shift in thinking, especially when
it comes to the events following the death of Ethan Saylor. I was
saddened to come back from my hospital hiatus to see that not only some
advocates, but even some of the major organizations are pushing towards
"Down syndrome specific training" for police and first responders.</span>
<span style="font-family: Verdana,sans-serif;"></span><br />
<span style="font-family: Verdana,sans-serif;"><br />
I'm not going to beat around the bush: I think this is really a
misguided application of energy. One in fact, that may undo years of
hard won advances with Down syndrome advocacy. There are a few reasons
for this, some of which I'm sure haven't been considered by those who
are pushing for it.</span>
<span style="font-family: Verdana,sans-serif;"></span><br />
<span style="font-family: Verdana,sans-serif;"><br />
Firstly, who decides what subjects are taught or what aspects of Down
syndrome will be highlighted in this training? What does this proposed
training involve? Not too long ago, the community was rocked by a
supposed "nursing" site posting an old <strike>image</strike> caricature
of an infant with Down syndrome. Many of the "conditions" presented
were irrelevant, occur in the greater population at random and have no
bearing on quality of life. What will affect a person with DS life are
things like heart disease, which the general population also has and in <i>much greater numbers</i>.
There are umpteen studies showing that positional asphyxiation is a
reality. Law enforcement and any person using restraint (including us
psych folk) are well aware of this. Every single document, every single
video that I have come across in my search clearly outlines the danger
of positional asphyxiation. A person with DS is in danger of dying when
restrained face down on the ground, yes. <i><b>So is everyone else.</b></i>
Except in Maryland, apparently. The reality is, these deputies knew
the dangers and chose to ignore them, or quite frankly, simply didn't
care.</span>
<span style="font-family: Verdana,sans-serif;"></span><br />
<span style="font-family: Verdana,sans-serif;"><br />
Secondly, who is qualified to teach 'Down syndrome specific training'?
Physicians? Lawyers? Other law enforcement? The National "Advocacy"
Organizations? Training also needs constant updating and
re-certification. Who designs these courses, who are the supposed <i>experts</i> here? Who accredits them? From what sources does their information come from? If you remove the <b><i>money</i></b> from the equation (as people will have to be <i>paid</i>
to come up with this course material, train the target audience,
maintain the certification and audit those with the training), who
really benefits from this training? The officers, who will look at it
as one more thing to endure to get their superiors off their case for
one more year? With that in mind, will these strategies really get
incorporated into everyday use?</span>
<span style="font-family: Verdana,sans-serif;"></span><br />
<span style="font-family: Verdana,sans-serif;"><br />
Thirdly, and most importantly is the glaringly obvious thing that people are missing:</span>
<span style="font-family: Verdana,sans-serif;"></span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;"><b>By advocating for Down syndrome specific training, you are further marginalizing those with DS as the <i>"other"</i>, as <i>"different"</i> and setting them outside the rest of society</b>.</span>
<span style="font-family: Verdana,sans-serif;"></span><br />
<span style="font-family: Verdana,sans-serif;"><br />
By stating that people with DS--a population that is as diverse as the
greater population it is derived from in the first place--need "special
considerations" when being talked to by a police officer, EMS,
Firefighter or whoever else you want to extend such "training" to, you
are predetermining. You are <i>profiling</i>, you are <i>prejudging</i>.
People do not fit into neat little boxes.
For example, you cannot deal with every mentally ill person that you
encounter identically as
there is a pantheon of symptoms and an equal amount of ways that
communication can break down. The differences are just as numerous and
the analogy holds when you are looking at people with developmental
delays. Every single person is different; in terms of DS, the extra
chromosome
can express itself in a multitude of ways. Some will have sensory
issues, most won't. Most will have heart issues, some won't. Making
blanket statements about anyone, be they developmentally delayed,
mentally ill, of a specific ethnicity, or any other <i>difference</i> that sets "<i>them</i>" apart from "<i>us</i>",
is dangerous, marginalizing and opens the door for so much abuse.
Relying on gross generalizations in times of crisis is poor preparation
and serves and protects no one.</span>
<span style="font-family: Verdana,sans-serif;"></span><br />
<span style="font-family: Verdana,sans-serif;"><br />
I have a great respect for all law enforcement, not just the officers
that I cross paths with in my line of work. I refuse to see police as
mindless killing machines who need to be distinctly told not to do
something so that all of us can stay safe. The ones in my community
certainly aren't, at least not any more. Back in the bad old days...
well, I could tell you stories growing up in this region. There is a
certain level of education that is required to get in now. There is a
certain level of community involvement that is required, you have to be a
very well rounded person to be considered, to represent a diverse
population safely and with compassion. That isn't something that is
taught or possibly can be taught, <i>it is recruited for</i>.</span>
<span style="font-family: Verdana,sans-serif;"></span><br />
<span style="font-family: Verdana,sans-serif;"><br />
We need real world solutions, not special training, to keep people like
my son from dying at the hands of those who are sworn to serve and
protect him and the rest of my family. </span>
<span style="font-family: Verdana,sans-serif;"></span><br />
<span style="font-family: Verdana,sans-serif;"><br />
With that in mind, allow me to humbly offer the following:</span>
<span style="font-family: Verdana,sans-serif;"></span><br />
<span style="font-family: Verdana,sans-serif;"><br />
1) Recognize that a Sheriff is an elected official not simply the "top
cop", who can quite easily become as corrupted as any other elected
official. Know your candidates and find out their track record prior to
them obtaining office. Cast your votes accordingly. </span>
<span style="font-family: Verdana,sans-serif;"></span><br />
<span style="font-family: Verdana,sans-serif;"><br />
2) Abolish "moonlighting". The deputies who were responsible for the
death of Ethan Saylor were moonlighting as mall security, a job that (if
our friends in mall security will forgive me) is well below their level
of training.</span>
<span style="font-family: Verdana,sans-serif;"></span><br />
<span style="font-family: Verdana,sans-serif;"><br />
Let me give you an example. As an RN, I am not allowed to work as a
Personal Support Worker if I find myself strapped for cash. There is a
reason for that: I have a certain skill set, a scope of practice and a
specific license. If I were able to take a job below that scope of
practice, yet in the same field, it would blur a lot of lines. If I was
tending to an elderly client who suddenly developed symptoms that I
recognized because I was an RN, I couldn't pretend it wasn't happening
because "a PSW wouldn't know that". By the same token, if I used
interventions that I know from being an RN, I would not be able to
legally justify/use them due to my current employment as a PSW. The
lines are too blurry, the jurisdictions too different. I can't be one
thing and pretend not to be a couple days a week to work a job with a
lower skill set, if only to protect my license and my main livelihood.
You shouldn't have active paramilitary personnel working as mall
security either. When the three men were called to the scene, they were
acting as mall security. Somewhere in there, they decided they were
deputies again. Regardless, they sure became deputies again (and
invoked all rights and privileges as such) once Ethan was dead.</span>
<span style="font-family: Verdana,sans-serif;"></span><br />
<span style="font-family: Verdana,sans-serif;"><br />
If I need a little extra cash, I pick up overtime. The police in my
area work along the same lines. There are also a lot of paid duty
opportunities for police as well. This is why here, you find uniformed
officers at ball games, outside construction sites, doing patient
watches in hospitals and at the liquor store at Christmas. During such,
they are expected to fulfill the responsibilities that their uniform
dictates. If malls and whatnot expect a certain level of security, they
pay for it. Offer the police a little respect and pay them properly to
perform their duties <i>as police officers</i>. They earned it.
Allowing active, trained officers to take lesser skilled jobs in a
related field is simply asking for trouble and opens the door for
tragedy, as it did in Maryland.</span>
<span style="font-family: Verdana,sans-serif;"></span><br />
<span style="font-family: Verdana,sans-serif;"><br />
3) Recognize that compassion cannot be taught or encouraged in those
that aren't receptive. Recruit accordingly. There are some that go
into policing that are angry, have deep set prejudices and too easily
cross the line. We all know stories of this, of cops that take it too
far. Take <b><a href="http://youtu.be/rReKf0tDvOM">this guy</a></b> or <b><a href="http://www.guardian.co.uk/world/2013/apr/14/florida-officer-trayvon-martin-gun-target">this guy</a></b>, or <b><a href="http://www.guardian.co.uk/world/2012/aug/02/uc-davis-pepper-spray-officer">this guy</a></b>.
But, for every horror story, I'm betting there are 10 great officers
(both men and women) who actually do care about the community they
serve. You need more of them in the field, not just in front of the
camera when the politicians feel it's appropriate. It is possible to
have a general sensitivity towards various cultures and groups and still
be able to control a situation (and ultimately ones self). It's been
put forth by one blogger that we live an ugly world and if there was
more compassion we would not need police or even soldiers as there
would be no war. I'm not talking about achieving Utopia here; sometimes
force is a necessary evil. However, I guess I'm a bit spoiled coming
from Canada. We don't have legions and legions of soldiers. The ones
we do have are respected across the globe for their compassion and known
as "The World's Peacekeepers". It is possible to be both. The police
in my community at least, certainly reflect this.</span>
<span style="font-family: Verdana,sans-serif;"></span><br />
<span style="font-family: Verdana,sans-serif;"><br />
The idea of "Down syndrome specific training" is ridiculous, insulting
and might very well put our advocacy efforts back decades. You cannot
train for such a diverse population, as <b>people with Down syndrome exist in every ethnic, socioeconomic and religious background</b>, not just white, middle class, Christian ones. <i>Those</i>
are the factors that dictate how a person with Down syndrome receives
care, is viewed in the community, is treated in their own family and
even how the person themselves view law enforcement and first
responders. <i>It is these factors</i> that will shape how a person
with Down syndrome will react in a a given situation, not their
chromosomes. The idea that my son, who will grow up respecting law
enforcement--just like Ethan did--could die of "Down syndrome" and
"heart issues" at the hands of law enforcement--just like Ethan
did--shakes me to the core. There are a lot of comparisons that I cannot
help to make between Ethan and Wyatt; Ethan's Mom is a well known DS
advocate too. The idea that sweeping generalizations, by the medical
community and by law enforcement, may very well rule my son's future
life and death, makes me angry. We cannot hope to change the public
perception of people with DS to one of complete inclusion by<i> </i>making<i> </i>people
with DS the "other" to the very people that are supposed to take care
of them. There is no magic list of "things that you need to know when
'dealing' with a developmentally delayed person" other than you are
talking to a human being with thoughts, feelings, desires and needs.</span>
<span style="font-family: Verdana,sans-serif;"></span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;"><b>Just like everyone else</b>. I cannot stress that enough it seems; that particular point<i> cannot</i> be lost.</span><br />
<br />
<span style="font-family: Verdana,sans-serif;"><span style="font-family: Verdana,sans-serif;"><span style="font-family: Verdana,sans-serif;"><i>[Originally appeared on <a href="http://downwitdat.blogspot.com/">Down Wit Dat</a>] </i></span></span></span></div>
Psychojenichttp://www.blogger.com/profile/02936930614210195529noreply@blogger.com0tag:blogger.com,1999:blog-7460552419406225222.post-1514720113832547042013-04-09T13:50:00.000-04:002013-05-01T08:27:18.795-04:00An open letter to Motherlode of the New York Times <div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: "Courier New",Courier,monospace; font-size: small;">We are writing as the founders and <span style="line-height: 22px;">representatives of Down Syndrome Uprising (DSU). DSU is a global </span><span style="line-height: 22px;">grassroots, volunteer activist initiative</span><span style="line-height: 22px;">.</span><span style="line-height: 22px;"> </span><span style="line-height: 22px;">DSU’s mission is – in part - to: serve as a </span><span style="line-height: 22px;">communication hub for the community of Down syndrome activists. The founders' </span><span style="line-height: 22px;">function as individuals is to maintain a page and a blog, curate </span><span style="line-height: 22px;">information and serve as the communications team. </span></span><br />
<div class="ecxp1" style="background-color: white; color: #444444; line-height: 21px; margin-bottom: 1.35em; text-align: left;">
<span style="font-family: "Courier New",Courier,monospace; font-size: small;">Our base of operations is a <a href="https://www.facebook.com/DownSyndromeUprising" style="color: #0068cf; cursor: pointer;" target="_blank">Facebook <span style="line-height: 22px;">page</span></a><span style="line-height: 22px;"> </span><span style="line-height: 22px;">and a <a href="http://downsyndromeuprising.blogspot.com/" style="color: #0068cf; cursor: pointer;" target="_blank">blog</a></span><span style="line-height: 22px;">. </span><span style="line-height: 22px;">DSU formed in January of this year </span><span style="line-height: 22px;">and has grown to over 1000 fellow online activists.</span><span style="line-height: 22px;"> </span></span></div>
<div class="ecxp1" style="background-color: white; color: #444444; line-height: 21px; margin-bottom: 1.35em; text-align: left;">
<span style="font-family: "Courier New",Courier,monospace; font-size: small;">On April 7th we posted a <span style="line-height: 22px;">‘call to action’ to contact the New York Times (NYT) to express </span><span style="line-height: 22px;">concern that the NYT allowed hateful comments regarding people with </span><span style="line-height: 22px;">Down syndrome</span><span style="line-height: 22px;"> </span><span style="line-height: 22px;">to be posted in response to the editorial published on </span><span style="line-height: 22px;">April 1st titled “<a href="http://parenting.blogs.nytimes.com/2013/04/01/outlawing-abortion-wont-help-children-with-down-syndrome/" style="color: #0068cf; cursor: pointer;" target="_blank">Outlawing Abortion Won’t Help</a> </span><a href="http://parenting.blogs.nytimes.com/2013/04/01/outlawing-abortion-wont-help-children-with-down-syndrome/" style="color: #0068cf; cursor: pointer; line-height: 22px;" target="_blank">Children with Down Syndrome</a><span style="line-height: 22px;">” by Alison Piepmeier.</span><span style="line-height: 22px;"> </span></span></div>
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<span style="font-family: "Courier New",Courier,monospace; font-size: small;">On the 'Help' page of the NYT you <span style="line-height: 22px;">indicate on what basis a comment is moderated: </span></span></div>
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<span style="font-family: "Courier New",Courier,monospace; font-size: small;">“<i>Our goal is <span style="line-height: 22px;">to provide substantive commentary for a general readership. By </span><span style="line-height: 22px;">screening submissions, we have created a space where readers can </span><span style="line-height: 22px;">exchange intelligent and informed commentary that enhances the </span><span style="line-height: 22px;">quality of our news and information."</span></i></span></div>
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<span style="font-family: "Courier New",Courier,monospace; font-size: small;"><i>"While most <span style="line-height: 22px;">comments will be posted if they are on-topic and not abusive, </span><span style="line-height: 22px;">moderating decisions are subjective. We will make them as carefully </span></i><span style="line-height: 22px;"><i>and consistently as we can</i>.” </span></span></div>
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<span style="font-family: "Courier New",Courier,monospace; font-size: small;">Given your own guidelines it seems you <span style="line-height: 22px;">made a decision to not moderate a great deal of comments that if made </span><span style="line-height: 22px;">in reference to any other group of people who are discriminated </span><span style="line-height: 22px;">against would not be seen as “intelligent” or “informed” and </span><span style="line-height: 22px;">would likely be seen as "abusive”. </span></span></div>
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<span style="font-family: "Courier New",Courier,monospace; font-size: small;">We can only guess at your motivation to <span style="line-height: 22px;">not moderate these comments. Perhaps when a discussion about a </span><span style="line-height: 22px;">particular group of people is wrapped in the context of the abortion </span><span style="line-height: 22px;">debate it becomes difficult to decide what is acceptable dialogue and </span><span style="line-height: 22px;">what is hate speech? </span></span></div>
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<span style="font-family: "Courier New",Courier,monospace; font-size: small;">Our concern is that the comments did <span style="line-height: 22px;">not reflect an actual debate on abortion but a hateful rant on the </span><span style="line-height: 22px;">politics of accepting people who are different from us to exist. If </span><span style="line-height: 22px;">those comments were </span><span style="line-height: 22px;">about people who were poor or gay or Jewish or </span><span style="line-height: 22px;">people of color would the NYT have considered them beyond the pale? </span><span style="line-height: 22px;">Would you have allowed those comments to be posted?</span><span style="line-height: 22px;"> </span></span></div>
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<span style="font-family: "Courier New",Courier,monospace; font-size: small;">If they would not have been allowed for <span style="line-height: 22px;">other groups we as a society have deemed protected why is hate speech </span><span style="line-height: 22px;">still allowed for people with Down syndrome? </span></span></div>
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<span style="font-family: "Courier New",Courier,monospace; font-size: small;">We hope this letter will serve as an <span style="line-height: 22px;">incentive to explore this issue by NYT. You could be telling a story </span><span style="line-height: 22px;">that is lacking in the public sector – insert great title here.</span></span></div>
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<span style="font-family: "Courier New",Courier,monospace; font-size: small;"><span style="line-height: 22px;">Respectfully,</span></span></div>
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<span style="font-family: "Courier New",Courier,monospace; font-size: small;"><span style="line-height: 22px;">Down Syndrome Uprising</span></span></div>
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Down Syndrome Uprisinghttp://www.blogger.com/profile/14015434768396941866noreply@blogger.com2tag:blogger.com,1999:blog-7460552419406225222.post-38132125583174059952013-04-04T23:30:00.000-04:002013-10-29T12:09:51.336-04:00Dream<div dir="ltr" style="text-align: left;" trbidi="on">
<div style="text-align: center;">
<span style="font-family: Verdana,sans-serif;"><i>"The whirlwinds of revolt will continue to shake the foundations of our nation </i></span></div>
<div style="text-align: center;">
<span style="font-family: Verdana,sans-serif;"><i>until the bright day of justice emerges."<br />-- <a href="http://youtu.be/smEqnnklfYs">Rev. Dr. Martin Luther King, Jr</a>. </i></span></div>
<div style="text-align: center;">
<span style="font-family: Verdana,sans-serif;"><br /></span></div>
<span style="font-family: Verdana,sans-serif;">Today is April 4th.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Forty
five years ago today, a man named Martin Luther King Jr. was shot to
death for speaking out about injustice, about poverty, about the denial
of basic human rights and dignity. His words, his actions shone a light
into the darkest corners of prejudice and hatred. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Eighty-two
days ago, a man named Robert 'Ethan' Saylor died face down on a floor
in a Maryland movie theater. He died of positional asphyxiation after
being handcuffed by three off-duty deputies who were moonlighting as
security guards at the mall next to the theater.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">His death too, has been ruled a homicide.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Ethan
was not a civil rights leader. He was a man who will always be defined
by his Down syndrome. His death is exactly what Dr. King was talking
about.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">It seems to be an easy thing, dismissing this
man's death. He had a developmental delay. He looked differently,
spoke differently. Interpreted the world around him differently
perhaps. Took a little longer to respond to things than you or I
probably. The different. The <i>other</i>.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Ethan died
because he had Down syndrome. Not that his chromosome killed him, or
that his health issues, probably treated less aggressively due to his
having Down syndrome, caught up with him quietly in his sleep. He died
because he did not live up to the stereotype of a happy, smiling,
hugging man with DS. He died, handcuffed by three sets of linked
cuffs, in a 'hogtie' position, on the filthy floor of a theater.</span><br />
<blockquote class="tr_bq">
<span style="font-family: Verdana,sans-serif;"><i>"...a promise that all men...would be
guaranteed the unalienable rights of life, liberty, and the pursuit of
happiness" </i></span></blockquote>
<span style="font-family: Verdana,sans-serif;">There
is a lot of anger in the various DS "communities" out there. As
parents, we often try and shield our kids and ourselves from the
ugliness that is out there. We involve ourselves in our chosen groups
and turn our focus inward. We get complacent, insular... and often
forget how terrible those who were <i>different</i> had it in the past. We forget how hateful society really can be.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">With Ethan's death, our innocence has been lost. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">It
is painfully clear that this can happen anywhere at any time. This
isn't just a random incident isolated to the state of Maryland. <a href="http://www.cnn.com/2012/12/20/justice/california-down-syndrome-custody">This story</a> comes to us from San Diego. <a href="http://campaign.r20.constantcontact.com/render?llr=afcudccab&v=00157CTivewliksAuM-GvLfITNSBS9h0mAL31CTOlDfwFWbzEQVmasa1rDKA85q3LqGVFKFANjYyUM_9SopN1mIHNxTCempG0HUCKm0eY9pTyPPU6Mk0eSWw10EY6IndfBJTRYfKVkAb5c%3D">This story</a> comes to us from Guatemala. <a href="http://www.mirror.co.uk/news/uk-news/downs-syndrome-girl-thrown-out-1786520">This story</a>
comes from the UK, where a family was asked to leave the theater as
their child with DS was "laughing too loud" at a comedic film. <a href="http://www.myfoxphilly.com/story/21875725/teen-couples-movie-date-ruined-at-marlton-nj-theater">This story</a>
comes from New Jersey, where a teenaged couple, instead of being taken
to the correct seats, were separated and made to sit elsewhere. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">There is a lot of<i> anger</i>
floating about. Although ruled a homicide, those that are responsible
for Ethan's death walk free. In fact, at first they went back to their
regular day jobs as if nothing had happened. After a few weeks, they
were placed on "Administrative leave". There is a demand for justice,
for this life lost.</span><br />
<blockquote class="tr_bq">
<span style="font-family: Verdana,sans-serif;"><i>"I have a dream that one day this nation will rise up and live out the
true meaning of its creed: "We hold these truths to be self-evident:
that all men are created equal."</i></span></blockquote>
<span style="font-family: Verdana,sans-serif;">We have lost our
blinders when it comes to how severe the hatred is out there. Each new
story tries to excuse the actions/inaction of everyone in that theater
by portraying Ethan as a monster. Instead of "young man dies", he had
"anger issues". Instead of "positional asphyxiation", he had "heart
problems". There aren't people carrying placards outside every
government building and movie theater denouncing the existence of those
with Down syndrome, true. However, every online source covering this
case has a litany of comments from ignorant, vitrol spewing people. I'd
re-invoked my rule of "don't read the comments" some time ago, but many
parents now are viewing the extent of society's contempt for our
children with reoccuring themes such as "where was his handler?", "anger
issues", "retard strength" and yes, even "broke the law/deserved
punishment" and "he deserved to die". We tend to shield ourselves
against such negativity; it is now there, in black and white, in our
faces. There is no escaping it now; we can't chalk this up to childish
pranks or attention seeking ''shock jock' disc jockeys. These are our
neighbours. They hate our kids.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Many people are
voicing feelings of abandonment by the organizations representing their
children. People have realized in the last while that the <i>charities</i>
that they have been donating to all these years do not advocate as they
claim to do. The giants are slumbering. Although one has roused and
briefly mumbled, those with the loudest voices of all are silent.
Passive. Allowing their inaction to speak for them instead.</span><br />
<blockquote class="tr_bq">
<div style="text-align: left;">
<span style="font-family: Verdana,sans-serif;"><i>"I have a dream that my four little children will one day live in a
nation where they will not be judged by the color of their skin but by
the content of their character..."</i></span></div>
</blockquote>
<span style="font-family: Verdana,sans-serif;">We would
like to think that all our children, not just the neurotypical ones,
can walk freely with their heads held high and achieve whatever it is
that they wish to achieve, to live to their potential. That the shape
of one's eye, the 'tone' of one's muscle, will mean nothing more than
the beautiful variance that is humanity. We parents feel keenly the
looks, the stereotypes, the assumptions. Those living with Down syndrome
are stung by the inequality and lack of representation.</span><br />
<blockquote class="tr_bq">
<span style="font-family: Verdana,sans-serif;"><i>"I am not unmindful that some of you have come here out of great trials and tribulations..."</i></span></blockquote>
<span style="font-family: Verdana,sans-serif;">I
was talking to a friend one night who looked at me at one point and
said "It is never "off" for you is it? There is no time when you are
free from all of this [prejudice]?"</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">No. There isn't.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">There
is a certain bone-weariness that comes with that. It in turn, makes you
want to isolate yourself further. To stop talking. To hide once again
and pretend that this is all not happening.</span><br />
<blockquote class="tr_bq">
<span style="font-family: Verdana,sans-serif;"><i>"But there is something that I must say to my people who stand on the
warm threshold which leads into the palace of justice. In the process of
gaining our rightful place we must not be guilty of wrongful deeds. Let
us not seek to satisfy our thirst for freedom by drinking from the cup
of bitterness and hatred.</i></span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;"><i>
We must forever conduct our struggle on the high plane of dignity and discipline..."</i></span></blockquote>
<span style="font-family: Verdana,sans-serif;">I've
heard this one too: "The problem with this is that there are too many
passionate parents." This is right, but not for the reasons that the
author intended. Parents are all too human as well. Full of the same
foibles as any random sampling of the population would be. If anything
should put to rest "only special parents are given special children"
chestnut, it is a good look at this membership into the "Trisomy 21
Parenting club". You will find the same personality disorders, the same
secondary gains, the same attention seeking behaviour. Because of
this, some of the louder voices are too easily perceived as shouting
randomly, by not only those minds we wish to enlighten, but by our own
people. Instead of coming together, we are driven further apart. Some
do quite successfully talk the talk and walk the walk... but still,
will never be able to fully accept their own flesh and blood as their
own and it saddens me even further.</span><br />
<blockquote class="tr_bq">
<span style="font-family: Verdana,sans-serif;"><i>"We have also come ... to remind America of the fierce
urgency of now. This is no time to engage in the luxury of cooling off
or to take the tranquilizing drug of gradualism. Now is the time to make
real the promises of democracy. Now is the time to rise from the dark
and desolate valley of segregation to the sunlit path of racial justice..."</i></span></blockquote>
<span style="font-family: Verdana,sans-serif;">This
is a time of struggle. This is a time of seeking social justice. This
is not a time to 'let nature take it's course' or win hearts with cute
pictures. This is a time of action. We don't have the luxury of doing
it any other way at the moment. Ethan's death has crystallized exactly
what is wrong with society and its treatment of those with Intellectual
Disabilities/Developmental delays. If we let this go, if we lie down
and go quietly into the night as those that make policy would have us
do, we are globally condoning the prejudice and brutality in the
articles I linked earlier. If we stop raising our voices and getting
"uppity", if we allow things to continue on in more gradual way, we will
be shown our "place" again and expected to stay there.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">My son does not have a "place", other than at his parents and siblings side.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">We
need to take action. Regardless of what country, what city you live
in, these events or ones similar are occurring there as well. Those
with Down syndrome, those with Intellectual Disabilities and
Developmental Delays are being disregarded out of hand. It is time to
stop being the <i>other</i>. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">We need to <a href="http://downsyndromeuprising.blogspot.ca/2013/03/call-to-action-robert-ethan-saylor.html">write</a>. We need to speak out. We need to <i>act</i>.
We need to represent those that have no representation. We need to get
our message heard and our sound amplified by those with bigger voices.
We need those living with DS to have a larger say. We need more self
advocates. We need visibility.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">I too have a dream, you see. </span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;"><a href="http://downsyndromeuprising.blogspot.ca/2013/03/call-to-action-robert-ethan-saylor.html">Raise your voice</a>.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">Let freedom ring.</span><br />
<span style="font-family: Verdana,sans-serif;"><br /></span>
<span style="font-family: Verdana,sans-serif;">----------------------</span><br />
<span style="font-family: Verdana,sans-serif;">King, Martin Luther, Jr. "I Have a Dream." Lincoln Memorial, Washington D.C. 28 Aug. 1963. Speech. </span><br />
<br />
<span style="font-family: Verdana,sans-serif;"><span style="font-family: Verdana,sans-serif;"><span style="font-family: Verdana,sans-serif;"><i>[Originally appeared on <a href="http://downwitdat.blogspot.com/">Down Wit Dat</a>] </i></span></span></span></div>
Psychojenichttp://www.blogger.com/profile/02936930614210195529noreply@blogger.com0