Friday, June 21, 2013

I'm Removing My Prenatal Testing Halo

I have had my moments of self-righteous judgement.  Shocking, I know.  I've strapped on my righteous halo in secret, just for comfort.

In the early weeks after discovering LP has Trisomy 21 (Down syndrome), I spent time pontificating on life and riding some emotional waves.  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.
For that brief moment, I felt a lifetime of guilt.

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.

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.

Let me tell you now, that was utter nonsense.  I apologize.  Deeply.  I have removed my halo.

I want to say some things to the women out there facing the difficult choices that line the road to motherhood.  Yes, to women.  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.

To the mother who participated in prenatal testing, 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.

To the mother who lost her baby after choosing CVS or amniocentesis, 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.

To the mother who never considered termination, 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.

To the mother who did consider termination after getting prenatal test results, 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.

To the mother who terminated her pregnancy after getting prenatal test results, 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.

To myself, 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.

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.

Wednesday, June 12, 2013

Don't be a Dick*

Being a bit of a geek, it shouldn't be surprising that I adhere to Wheaton's Law.  For those that aren't familiar with this little bit of memedom, Wil Wheaton (of Star Trek: TNG 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 "Don't be a Dick Day".  It's premise is pretty simple;  don't be a dick.  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.

Wheaton's Law.  There are shirts.
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 medal winning athlete was denied entry into a gas station 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 Post Traumatic Stress Disorder.  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.

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.

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.

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.

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).

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 have been accused of that one, actually). I don't have the energy for that level of unbridled emotion, frankly.

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). 

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 want 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.

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.  

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 is 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.

Comparing Down syndrome to ASD is like comparing apples and pelicans anyway. 

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.

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".

Speaking as a someone who loves someone with a learning disorder, we already have enough of that to deal with.

*Unless your name is Richard.

[Originally appeared on Down Wit Dat]  

Tuesday, June 11, 2013

Call To Action: Frederick County Sheriff Department Accreditation Committee

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.

Commission on Accreditation for Law
Enforcement Agencies, Inc. (CALEA)
13575 Heathcote Boulevard Suite 320
Gainesville, Virginia, 20155

Dear Assessment Team,

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.

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.

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.

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.

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.

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.

Thank you for your time and attention to this matter,

[Your name goes here]

Sunday, June 9, 2013

Call to Action: Va. Lt. Governor Candidate E. W. Jackson

According to his book, Ten Commandments to an Extraordinary Life, the Republican candidate for Lt. Governor in VA, E.W. Jackson, believes that "birth defects" are the result of sin
"It is the principle of sin, rebellion against God and His truth which has brought about birth defects and other destructive natural occurrences."
After centuries of ignorance, we're still battling for basic human dignity.

Tell E.W. Jackson that genetic diversity is not the result of sin.



P.O.Box 15003
Chesapeake, VA 23328


TWITTER: @Jackson4VA


Friday, June 7, 2013

Potential, Disability, and Human Worth

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 what?  Happiness?  Wealth?  Influence?  Raw ability?  What kind of ability?
I hear a lot of talk about potential.  I want my baby to develop to his full potential.  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 Down syndrome was the idea of my child having an intellectual disability.  So the idea of him having somehow more 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 could have had.  Lost potential.
I was wrong.
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.
Judging another human’s potential through the lens of their disability is not only a futile exercise, but it creates a hierarchy of worth.
It is dangerous.
This is why new prenatal tests are a vehicle for eugenics, under the guise of medical care.  This is why Ethan Saylor’s death 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 less.  Adults struggle against an employment system that believes their work is worth less than that of their non-disabled counterparts.
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.
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.