Celebrating Down Syndrome Awareness Month

A couple of weeks ago, out of the blue, I received an e-mail from a stranger about a book chapter I wrote over ten years ago about my prenatal diagnosis of my son’s  Down Syndrome.  Over the following days, I got a steady trickle of e-mails about the same piece, from people all over the world.  I eventually traced it back to an edited version of the chapter printed on a website in Australia associated with the Sydney Daily Herald.  They reprinted my piece in the wake of the furor over the Australian couple who hired a surrogate mother from Thailand to gestate twins for them, and refused to take the twin who was born with Down Syndrome (a beautiful boy named Gammy). 

 

Most of the emails I got were from other mothers who had children with Down Syndrome, and most of the time we exchanged some variation of the sentiment:  "Aren't we the lucky ones?"  One of the moms followed up her initial e-mail with another that said, "My daughter with Down syndrome just got nominated for homecoming court!!!  The world is definitely changing for the better.”

 

I certainly share her view that, with respect to day to day treatment of people with disabilities, the world (or at least the U.S.) is a better place now than it used to be.  My work over this past year on this Disability Justice website confirmed that.  The “Basic Legal Rights” section of the website tells the story of the evolution of our fundamental civil rights laws to recognize the right of people with developmental disabilities to live with dignity in our communities rather than in segregated institutions, to be free from unnecessary restraints, to be educated in our public schools, to work, and not to be subject to involuntary sterilization or servitude.

 

But it can be discouraging to continue to see, even today, examples of  how those basic rights continue to be ignored for the most vulnerable among us.  The website was funded from a cy pres fund established in connection with a settlement reached by the Minnesota Department of Human Services of a lawsuit brought in 2009 (!!) on behalf of three men in a state-run residential facility for people with developmental disabilities.  The plaintiffs claimed that “as a means of behavior modification, coercion, discipline, convenience and retaliation, . . . staff restrained plaintiffs using law enforcement-type metal handcuffs and leg hobbles for conduct as benign as spitting, laughing or hand-washing.”  The judge in this case has had to appoint a Court Monitor to oversee implementation of the Settlement Agreement, and has now twice extended court’s jurisdiction over the case, in the face of the State’s continued failure to live up to its agreement.  In his most recent order extending jurisdiction for another two years, just this September, U.S. District Court Judge Donovan Frank wrote:  “Multiple admonitions to the DHS have been insufficient to secure effective action by the DHS to close the significant gaps between its stated intentions and actions. Continued implementation delays can no longer be tolerated. More importantly, the dignity, quality of life, and best interests of every Class Member and similarly situated individuals with disabilities hinge on fulfillment of the promises made by Defendants at the fairness hearing in this matter.”

 

The entire Disability Justice website is peppered with links to recent news reports of the continued disregard for the dignity and legal rights of people with disabilities.  The story of the group of men with cognitive disabilities locked up nights in a vermin-infested building, released in the day to eviscerate turkeys for $65 a month reads like something from a Victorian horror novel, rather than a New York Times report about a situation uncovered in 2009 in rural Iowa.  Equally heart-breaking are some of the other stories linked in the pages outlining the continued abuse and exploitation of people with cognitive disabilities, in the links at the bottom of this page.  

 

October is Down Syndrome Awareness Month.  Let’s hope it brings more stories of beautiful children with Down Syndrome being nominated to homecoming courts, and fewer stories of beautiful children with Down Syndrome being rejected by their parents.