BREAKING NEWS: We can reproduce!

I've had a couple of years to recover from the last time that a woman with my condition's pregnancy became the focus of media coverage. It was February 2006 when the birth of a son to Eloysa Vasquez was considered "breaking news". Eloysa and her much taller husband were interviewed on several morning talk shows and most articles highlighted their height difference and Eloysa's weight (37 lbs) in their stories. The fact that their child did not inherit our condition, Osteogenesis Imperfecta, was also framed as a miracle. I suppose the facts about the genetic inheritance of OI are not as glamorous. Still, a part of me was happy for the opportunity that the public received some positive education about OI and maybe a few myths were dispelled about sexuality and people with disabilities.

[Photo caption: Eloysa Vasquez and her husband smile holding their newborn baby boy.]

The whole air of amazement surrounding this story is a bit confusing to me because I know several parents with O.I. I have a friend not much younger than me with two children and my best friend, who is 3'1 (since height/weight seems the variable of interest) just gave birth to my goddaughter, Jasmyn, 5 months ago. For whatever reason though, Stacey Herald's birth to her second daughter seems to have startled the nation. Google reports 98 news headlines about "the 18 inch baby girl born to her 28 inch mom"! I'd like to be an optimist and think that this coverage is truly grounded in a simple attempt to capture some good news within the media's world of crime and destruction. From the articles and interviews themselves I'm a little uneasy with what feels like a "freak show" element of her exposure. Before you deem me paranoid or suggest I revel in the pink booties and baby excitement, take a look at any page of comments related to these news stories. There you'll see the reality of the public's reaction to people with disabilities and our choice to reproduce. There you'll see the real prejudice that is very much still alive behind a friendly handshake and the many claims that we're so "inspirational".

If I wanted to preserve my relaxed, carefree Saturday mood, I probably should have avoided the comments, but who can resist? The social pressure of acceptance and tolerance has forced hate underground and hiding under "anonymous" allows many people to state their real feelings about people with disabilities. I put my own thoughts to the test to see how the public's reaction really compared. A behavioral experiment of sorts...

So first, my suspicions that the way these stories are construed include a flavor of voyeurism and a flash back to freak shows:

 

     A comment from crosimoto at ShortNews, "I wish there was a pic of her at 9 months. I feel wrong for wanting to see that."

Of the five comments on this article, 3 state requests for pictures.

Even I thought I was perhaps being too cynical when the thought crossed my mind that maybe this birth, instead of her first, made headlines because Stacey and her husband produced a healthy baby without OI. According to comments, many view Stacey's first child (with O.I.) as a burden to society:

 

     A comment from the courageously named "hmm" at a Tennessee news site, "Courageous........my **** She took a risk that her children will be disabled as she is and while yes she gave birth to one health child, she also gave birth to a child that will go through life with serious medical conditions.....and thus we'll have one more person signed up on disability that my tax dollars have to pay for. I say shame on you lady."

"Hmm" goes on to ramble and assume that we're all merely burdens on society. He speaks with such assurance that you'd think he'd literally written the check for the Herald's delivery bill because he's "sure this lady got free care from Medicaid, or as those on it see it as free." I could retort how ignorant it is to assume that every person with a disability is covered by Medicaid. I could open an entirely different vein of challenges for our culture and discuss the fact that most of the other illustrious insurance companies, like I'm sure the prestigious one Mr. Hmm is covered under, REFUSE to cover people like me, Stacey Herald, and other people with pre-existing conditions. Medicaid is often our only option not because we'd like to "bleed society dry" but because even when I'm a published researcher and an active therapist in the community contributing in a way that I know will be more positive than Hmm's rude remarks-Humana, Bluecross, United, etc. will STILL deny me based on my pre-existing condition.

[Photo caption: Baby sucking pacifier holding out hands with the words 'love' and 'hate' written on the knuckles of each hand.]

Believe it or not-there are dozens of other comments that are even more insulting and even more evident of the battles that we still have yet to fight. I'm personally happy for the Herald family and their new addition, but it is depressing to see the way our world greets the newest members of our culture. I did find a silver-lining in my weekend research on this story in a comment from a husband to an unidentified woman with Osteogenesis Imperfecta, who is also a mother. His words helped me realize that I'm not alone in the fight. Whether our genes include OI or we're connected through the love of friends and family, we have a strong army on our side as well.

    

A comment from Sean Roth also on the Tennessee news site, "I am so thrilled we are not living under the rule of Adolph Hitler as seemingly many of you wish we were..or in caveman times when the disabled had to be left behind to die.I will pray for each one of you ignorant, close minded ,and thoughtless people who may not have small bodies or suffer ceaselessly from broken bones...but worse...have small hearts and minds and suffer from a broken soul."