Monday, December 2, 2013

International Day of Persons with Disabilities - Blog Symposium

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? 

3 December 2013 is the International Day of Persons with Disabilities.

The theme for 2013 is "Break Barriers, Open Doors: for an inclusive society and development for all." Read more here.

We will host a blog symposium on this blog on 3 December 2013 to draw attention to what the United Nations has defined thusly:

"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."

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.

Linky will be live here on 3 December 2013, 12am EST.

(For step by step instructions to add the linky to your post, click here.)

Monday, October 28, 2013


Down Syndrome Awareness Month (US) is slowly drawing to a close.

As you all pretty much know by now, I'm not exactly a fan of "awareness".  At all, actually. 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.

To begin with, what most people attribute to awareness is actually advocacy.   When you teach, correct, explain, speak out, represent, whether subtly or more energetically, you are advocating 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 more 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. 
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".  This survivor puts it more succinctly than I ever could.

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.

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.

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.  It can be a blog, 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, it can further the "othering" 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.

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, I disagree wholeheartedly.  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.

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 why, who rejects this model of 'advocacy' is considered "hate filled", dangerous and ultimately a crack pot. 

I think folks need a reminder of what hate looks like.  This was posted to my Google community a few weeks ago:
[Image: caricature of an adult male with Down syndrome.  The caption reads
"Congratulations, your kid has Down Syndrome!"  The word balloon
from the man reads "I can count to potato".]

And then there is this:  neglect and abuse perpetrated by family, not to mention murder or attempted murder, stories of which are not decreasing in prevalence.  There is this, the historical systematic disregard of the those deemed "unfit" .  Let's not forget the wholesale extermination of those same people.  Not in the least is the systematic isolation, abuse and neglect of hundreds of thousands of lives at the hands of 'caregivers'.  

This 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 here.

Asking why?  That is not hate. 

I am angry 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.

People, regardless of ability, are people and should be accepted unconditionally.  Acceptance is not something that is earned or has to be proven.   Inclusion 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. 

That's the awareness we should promote.  Not the awareness of Down syndrome being a real thing that exists, 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. 

I'd advocate the hell out of that one too.

[Originally appeared on Down Wit Dat

Wednesday, October 23, 2013

Falling Inbetween

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. 
 "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 

 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. 

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. 

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. 

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. 

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. 

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." 

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. 

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

[Originally appeared on Green Tea Ginger] 

Wednesday, October 16, 2013

Keeping it Real

I'm not unhappy.  My life is pretty good.

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.

We're not unhappy.  Life is not hard.

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 life, sure.

But we're happy.

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.

But, we're not unhappy.  Not in the least. 

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 grieving.  As I continued to write updates to my family, that is how I described it.  Grieving.  Down syndrome was making me grieve.

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 only natural, after all. 

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 just himself, 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.

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 check my ableism at the door and realize quite a few more things, but you can see where I actually started to get it.

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, I'm done with awareness.

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. 

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.

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.

We're not unhappy. We're real.

I long for the day when no one is surprised at that statement.

[A banner for Down Syndrome Uprising, depicting the text "Down Syndrome Awareness Month,
with the word acceptance stamped over the word awareness.]

[Originally appeared on Down Wit Dat

Thursday, October 3, 2013

When We Slip and Slide - A Lament

Nope. No actual water in this post.

What is 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, affected by a condition?

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 we need to do more. 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 that. </sarcasmfont>

I always have to dig, wonder, question, and reflect.

Dammit, if I'm not just "full of hate" and "looking for things to be confrontational about." Ho hum. Yes, more sarcasm.

But October is Down Syndrome Awareness 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 raise awareness 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. Last year I managed one post. 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 sitting chasing a wily toddler drinking thinking not cooking reading doing laundry resetting and degooifying the 'puter, the iPad, my phone, and the DVR living and being generally a big wet blanket, right?

I'm excused and can just harp from the sidelines. Awesome.

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.

Love is always nice. Isn't it just?

But sometimes we I have to be contrary. Sometimes I have to embrace my anger at the society 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 the cause.

It could fuck with the kumbaya.

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 the cause I'm interested in.

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.

But that's just not how stuff shakes out. Or doesn't. Egg stains, people. Egg stains.

Sometimes raising awareness about Down syndrome becomes about a heightened sensitivity to that which all too easily makes a person with Ds the Other, and worse yet, people with Ds a unified, homogeneous group Other. Awareness of a condition can lead to the idea that people with the condition need to be handled or dealt with in a certain way, differently from those without the condition, and potentially to the notion of differing expectations of the people with the condition. Raising awareness about Down syndrome, the genetic condition, can easily chip away at the individuality of a person with Down syndrome, the people who have this genetic condition, 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 directly and simply links them to that triplicate of the 21st, 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, countless, 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.

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.

Notice the difference?

Awareness can all too easily become about "Down syndrome things." It can slip from medical conditions slightly 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?)

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 co-occurring symptoms. The symptoms 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, ever, in the general population, but are always, always present in Down syndrome. There really should be a pill, you know.

Excuse me while I scream in frustration. Having to be that facetious and liberal with italics does that to a person, you know.

(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.)

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.

I'll let her find her own way.

Ideally, I'd like to have her find it without having a certain type of awareness 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.

Ideally, 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.

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 others like her (See what I did there? That's how easily we slip and begin sliding...).

Anyhoo, who's in for a little overthrowing? I'm free most Saturdays and come with wine.

This post appeared originally on 21+21+21=?

Wednesday, October 2, 2013

The Space Between

When 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.

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.

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.

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.

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.

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.

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 Keep Sweet 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.

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.

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.

Friday, August 30, 2013


"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'm angry.

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.

But I am angry.

And that is a good thing.

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.

Or, in the words of Alyssa at Yes That Too:
"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 realize something is wrong, that something needs to be fixed."
Anger is a very powerful force.  There is a lot to be angry about these days.  There is an awful lot that needs fixing. 
This week saw this hateful letter 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 here?  This is obviously a hoax, right? And so on...  Although technically "not a hate crime" (as no threats of physical harm were made), these things happen to those with special needs all the time.  This family in Colorado is fighting with their neighbours who want their wheelchair ramp removed from the front of their home for fear it will lower property values.  This flyer was put up in the Portland area, presumably to shame those with "fake" disabilities.  This veteran was kicked off the boardwalk in New Jersey and issued a summons for his service dog. While on the subject of service dogs alone,  this story was published in the New York Post, lamenting "fake" service dogs and as Stephen Kuusisto put it, is " of the most willfully underhanded pieces about disability I’ve ever seen in a newspaper."

These stories aren't random and isolated incidents.  They, and many more like them, have occurred this month

Ableism, whether you wish to acknowledge it or not, is running wild in the Western world.

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 denied access to education 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 performance of all students is improved in an inclusive setting. 

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.  I've stated before, anything that describes my son as anything other than human is wrong.  Period.

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 positive.  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 positivity because it all boils down to a matter of marketing.

I guess it's bad marketing that forces young people with disabilities to be housed in nursing homes 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.  Marketing 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".

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 pedestal ableism and by alienating those with DS from the larger disability community.  In the words of Lawrence Carter-Long, Public Affairs Specialist at the National Council on Disability:
"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!"
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 Jenny, 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
"No, fucking no, we are not myths! We are not some mythical other! We are humans."
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 palatable to people.  To be like Wonder bread;  soft,  not much to chew, devoid of any nutritional content and bleached very white.

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.

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.

I will leave you with the words of Cheryl Marie Wade, a lady that I only came across a few years ago when I started reading disability history for my A Brief History... 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.
"We ain't smilin' inspiration for the latest worthy cause
But generation after generation changing the laws
Parents fighting for their children.
Kids fighting for their dreams.
Maybe you've be deprived,
Maybe all you know is Jerry's kids--
Those doom drenched poster children hauled out
once each year to wring your charitable pockets dry.
The tragic--but brave, victim.
We are also Jerry's orphans,
Proud freedom fighters,
Takin' to the streets,
Takin' to the stages!
Raising speech-impaired voices in celebration of who we are--
Radical.  True.  Passing the word..."

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.

I'm angry.

It's a damned good thing.

Sparks II
Fire, good.
[Originally appeared on Down Wit Dat

Saturday, August 3, 2013

The Problem With Down Syndrome: Part 2

I just want a healthy baby.  I think every single prospective parent must utter these words at some point, but it is worth questioning.

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.

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?

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.

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.   Sickle cell anemia.  Tay Sachs.  Cystic Fibrosis.  Thalassemia.  Familial Mediterranean fever.  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.

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 leukemia and seizure disorders, less hardening of the arteriesdiabetic blindness, fewer solid tumor cancers, fewer cavities, and lower likelihood of both cerebral palsy and high blood pressure?  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.

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?

Again, I'm don't want to minimize the real health concerns, and I think we need more 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 being a form of poor health in a way fundamentally different than a person with typical chromosomes doesn't feel right.

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 defective 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?

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.

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?

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 despite their 47 chromosomes, but with their 47 chromosomes.

Next up: Intellectual Disability*
* 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.
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

Monday, July 29, 2013

Believe and Live

I love this article 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, and agree on, just exactly what we are fighting for. Right?

So what is it? What am I doing here and elsewhere?

For me it all comes down to acceptance, meaningful inclusion, and equality.

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.

We need vision.

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.

It is about not getting discouraged and just doing what's best for my specific kid or myself, right here and right now.

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.

I want to kill the positive stereotypes and the well-meaning misunderstandings about a 'mystical' chromosome. I want to stop allowing for reductionism for inspiration's sake because it is the lesser of two evils.

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.

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 it gets insidiously reinforced 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 perceived unity of the experience of disability concerns me.

Most people follow, they adapt, they go with the flow. We, as advocates, need to define the current.

We have an audience.

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.

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 ableist way of thinking is to be dismantled.

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, for her own sake." 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."

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 the life?

We have to turn the tables.

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 natural state of things. Through inclusion everyone's experience, everyone's life will be just that much more normal (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."

We can't try to sell or market disability: "please accept my kid, she is not just a useless eater, she can do 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.

I will believe it and live it.

Disability is natural. Down syndrome is natural. It's about time everyone knew.

This post originally appeared on 21+21+21=? 

Friday, July 26, 2013

A Brief History of Down syndrome - Part 7: Abused, Neglected, Forgotten

"Euthanasia through neglect..."
– Albert Deutsch

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 once again, 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.

Patient record from Letchworth Villiage.
Photo courtesy of The DNA Learning Center
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):
"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."
"We were greatly heartened by the appearance. It resembled a
college campus." Image courtesy of the Disability History Museum
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 The Rotarian 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:
"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."
The "brain x-ray" in this case is probably referring to a common diagnostic technique of the time, Pneumoencephalography, 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.

"A Father" felt, if Mary-Lou was kept at home, it would disrupt family life and result in public ridicule and shame;
"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.

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..."
Her admission to a state facility was described as quick and efficient;  the results curative.  The story concludes with "And so tragedy came into a family that barely knew the word. We think, we pray, we have faced it wisely".

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.

Albert Deutsch, who has been described as "a crusading journalist" wrote The Shame of the States in 1948, a compilation of his serial articles (previously published in major newspapers) which exposed the conditions of Letchworth Village 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.

Opening in 1911, Letchworth Village 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;
..."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."

Photo of Letchworth Village, looking like a college campus.
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:
" 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."
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. 

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 "euthanasia through neglect...".

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 Philadelphia State Hospital, in 1946 which exhibited appalling imagery of overcrowding, abuse and severe neglect.

The Nuremburg Code 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 only 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 Fernald Center in Massachusetts (superintended by eugenisist Walter E. Fernald) 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:
Dear Parent:
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.
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 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.
Sincerely yours,
Clemens E. Benda, M.D.
[Fernald] Clinical Director
What was not mentioned to the parents was that the calcium given to their children in the milk was radioactive.

From the mid 1950's to the early 1970's, researchers at the Willowbrook State School in New York, carried out experiments on children that were deliberately infected with Hepatitis A and then treated with gamma globulin.  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.

Patients at Letchworth.  Photo courtesy of Bob Paley
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.

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.

Image courtesy of The Minnesota Governor's Council on Developmental Disabilities
In 1950, another surge of advocacy took place in the United States.  Parents had begun to organize and had created the National Association of Parents and Friends of Retarded Children (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 retarded, 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.
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 en masse.  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.

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 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."
From "Christmas in Purgatory".  Image courtesy
of the Disability History Museum

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".

Senator Robert Kennedy toured Willowbrook in 1965, (accompanied by a TV crew) and compared it to a "snake pit".  It's population of 6000 children was 2000 over capacity.  He described the children as "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".  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 "Christmas in Purgatory" when Dr. Burton Blatt and photographer Fred Kaplan used hidden cameras to capture images of the atrocities in several institutions.  According to Dr. Blatt "there is a hell on earth and in America there is a special inferno".  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:
"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..."
"Christmas in Purgatory" 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.

From "Christmas in Purgatory".  Image courtesy
of the Disability History Museum
"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."
"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."
"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..."

This news special produced by NBC in 1968 still clearly shows subhuman living conditions in The Pennhurst State Home in Pennsylvania.

"Suffer the Little Children" by Bill Baldini

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 Staten Island Advance 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 "Willowbrook:  The Last Disgrace".  His story, which won a Peabody Award, showcased the overcrowded, unsanitary conditions and the physical abuse of the patients by the staff.

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.

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:

"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..."

"... 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.

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"
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 feeding 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 "the right thing to do".

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 begin 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.

We in society have a responsibility to ensure that these victims are not forgotten.  We also have a mandate to ensure that such atrocities never happen to another human being ever again. 

Anonymous graves at Letchfield Village.  Photo courtesy of the New York Times.

[Next time:  The rise of the parent advocate]

----------- Applebome, Peter. "Giving Names to Souls Forgotten No Longer." The New York Times. The New York Times, 13 Dec. 2007.

Buteux, Lindsay. "Letchworth: The Village of Secrets." Outlook Student Press. Outlook Student Press, 8 Nov. 2010.

Chicago Municipal Code, sec. 36034 (repealed 1974).

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. 
Corcoran, David. "THIELLS JOURNAL; Graves Without Names for the Forgotten Mentally Retarded." The New York Times. The New York Times, 09 Dec. 1991.

"Disability History Exhibit." Disability History Panels. Alaska Department of Health and Social Services.

Harkins, Don. "Federal Government Publishes Confession; 1995 Report to Clinton Documents 30 Years of Radiation Experiments." The Idaho Observer [Spirit Lake, Idaho] May 1999: The Idaho Observer.

"Legend Tripping in Letchworth Village." AbandonedNYC. N.p., 5 Aug. 2012.
Little, Charles S., MD. Letchworth Village: The Newest State Institution For The Feeble-minded And Epileptic.  The Survey, 12 Mar. 1912.

Paralells in Time; A History of Developmental Disabilities, The Minnesota Governor's Council on Developmental Disabilities, 2012.

Staff (September 10, 1965). "Excerpts From Statement by Kennedy". The New York Times.

Suffer The Little Children, Pennhurst State Home: Eugenics + Social Services - Pennsylvania. Perf. Bill Baldini. NBC10, 1968.

Slater, Catherine, MA. "A History of Mental Disability 1000AD-2000AD:From Idiocy to Intellectual Impairment Web. 22 July 2013.

The Child with Mongolism: 80 to 90 Per Cent Can Learn to Do Simple Tasks. Great Britain: National Society for Mentally Handicapped Children, 1973. Print.

"We Committed Our Child." The Rotarian (1945): Disability History Museum.

"Willowbrook State School." Asylum Projects. Asylum Projects, n.d. Web.

[Originally appeared on Down Wit Dat