Chickadees

My chickadees

My friend Michelle Wolf wrote a great piece today over in Jewish Journal, highlighting a terrific blog called Sibs' Journey: Broadening the Narrative. Here's what the three young college students have to say about their summer project:

We are three college students embarking on a cross country journey this summer to learn more about what it is like to be a sibling of someone with special needs.  We plan to interview siblings of individuals with several types of developmental disabilities.  The age range of  interviewees and diagnoses of their siblings will vary.  On our journey around the United States, we hope to collect more information and narratives about how living with a sibling who is neurologically atypical (e.g., having autism, Down’s Syndrome, or any other type of intellectual disability) affects the social and emotional development of the sibling.

I've been lying on my bed in a laundry and post-having-to-give-Sophie-rectal valium-haze, reading these posts and have alternately smiled and cried through nearly all of them. This section really got to me, of course. Here's an excerpt from Our Greatest Cheerleaders:

In an effort to make sure our views are completely clear, we want to provide a page that focuses on how incredibly passionate, strong, brave, selfless people our parents are. Though this blog puts a strong emphasis on a sibling’s role in a family, we in no way want to denote the merits of which we commend our parents.

There's also this, written by Claire, a sophomore at Princeton and one of the trio who author the blog:

Then, slowly but surely, I started to discover other people who were also playing the role of the “normal” sib. These people “got me” more than even my most well-meaning friends. They allowed me to have a space where I could freely talk about how I felt about my family and specifically my relationship with my brother. As I have gotten older, I have become more and more interested in what we as sibs have in common. I started to see the potential for a new narrative about disability, coming not from parents or doctors or psychologists but from sibs like us. 

It's important reading and watching (videos included), and I hope that you all will do so!

Thank you, Ellie, Renee and Claire. What beautiful, intelligent and strong women you are.

Down Syndrome, Comments, and Fellini

Allison Piepmeier, a brilliant academic writer friend of mine, and the mother of the incomparable Maybelle, had a piece published in the New York Times'  Motherlode column a couple of days ago. Allison wrote the piece as a response to the recent law passed in North Dakota outlawing abortion for fetal conditions such as Down Syndrome. I won't review what she said, as the piece is short, and I'd urge you to read it yourself, but what has stuck with me in particular all day long are the more than 200 comments that I made the mistake of skimming through after reading Allison's intelligent words. Filled with vitriol -- on both sides of the abortion issue -- they are, with few exceptions, some of the most ignorant and upsetting opinions and viewpoints that I've read in a long, long while. They are the stuff of depression, the stuff that drives some of us in the disability world to want to retreat into caves, overwhelmed at the prospect that no matter how hard we try, we may not ever fully engage people into valuing the lives of people with disabilities. Full inclusion might never happen, our children and fellow citizens might continue to be commodities, burdens that inhibit productive life, argued over in the marketplace.

I'll say here that I am particularly repelled by Dakotan lawmakers who have passed some of the most draconian laws against women's reproductive rights in the country, but I am also disturbed by those in the disability community who champion the law as, somehow, a victory for the most vulnerable. I have been asked the infamous question about Sophie and abortion -- whether I would abort her if I'd known what would happen. To this question, I will only answer that it's impossible. It's impossible for me to answer this question. I am who I am because of my daughter's strange journey on this planet, and I am who I am, living questions, not answers.

And now let me retreat to my cave. I'll be watching this: