Don’t Hold Me Back – What Will the Next Generation of Kids with Disabilities Say About Us?

When you meet kids who make up the next generation of those who we now refer to as “disabled” you have to wonder what they will think of the how well we have done in setting the stage for their success. In many parts of the country we’re living through a post-segregationist era. Torn loose from the bricks-and-mortar facilities and armed with the new technologies that allow all of us to perform beyond our expectations; will they view us as good stewards of a time of opportunity or as a generation that pulled back and retreated from the future or unknown challenges and dangers? When I have met these kids they surprise me with their boldness in “claiming” their disability. They study their diagnosis and, by owning the language, own their future. I know of kids who wear arm bands that playfully declare “attention deficit”; even tattoos! Toddlers wear tee shirts that claim “I have an extra chromosome and I know how to use it!” And yet, there are other parents who have decided that the world is a threatening place. They’ve experienced the pain of watching their kid’s social circles diminish after High School and commit their hared earned resources to creating protective housing; what many of us have worked decades to dissolve and liberate.

I didn’t choose the title of this article lightly. I come from the 60’s generation…OK, the 70’s. But I have to say that I judged my parent’s generation harshly. Why were they trying to hold us back, insisting upon old rules and conforming to standards of bygone times? I must also say that, while I rejected this conformity for much of my early years, a seminal moment came when I watched the film “Saving Private Ryan”. I cried at the end of that movie. And I thought, my god, no wonder my parents thought that we were squandering everything that they sacrificed. A whole generation dedicated to making the world safe, And all we had to say was, fuck off!

So, today I meet parents who have raised their kids with disabilities well. They’ve read every book and signed up for every lecture. They’ve attended the IOD Leadership Series and met the leaders in the field espousing progressive views on a vision of a new world for their kids. And yet…they alone face the question; what will be there when I die? You may be reading and thinking, “I deal with this for all of my kids”. But there’s a difference; at least I think that I understand that there’s a difference. The parents that are most challenged by this question are simultaneously confronted with the experience of seeing the social circle that they have worked so hard to create around their child throughout school completely disintegrate upon graduation. Ashes to ashes. Watch that happen to your child and stand back; mama bear and papa bear are ready to roll. 

So, is the answer segregation and protection? Bricks and mortar? Or is the answer, going another round with building an adult version of circles of support? Maybe there is a middle ground. However, what cannot be denied is the cautionary tale of the horrible consequences on a societal level of segregation. When I watched “Saving Private Ryan” I remembered what the greatest generation saved us from. The world was at risk of domination by a totalitarian ideology that was based on a theory of a master race, and pursued a course of extinguishing all people who diverged from that concept of purity. In the liberation of the concentration camps, members of my parents generation witnessed first hand the consequences of this theory. Today we have films of the soldiers, weeping and staggering through the process of liberation of the concentration camps. But they were too late to liberate the people with disabilities who were the first to experience the horror of this regime. The irony has been lost in most of the depictions of this horrible time in our world history. Not only were people with disabilities the first victims, but their horrible destiny was a direct consequence of the Nazi party’s appreciation of the best research and studies of those circles of academia in the Unites States that championed success, dominance and beauty.  No less than the great justice Oliver Wendell Homes stated:  “It is better for all the world, if instead of waiting to execute degenerate offspring for crime or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind…Three generations of imbeciles are enough.”

And so, back to the question; what will the next generation think?”. They will thank our grandparents for making schools accessible. They will thank Steve Jobs for creating a device that supports cool apps that provide better communication and methods social engagement. They’ll thank the Kennedy’s for their multi-generational commitment to people with disabilities – some helpful, some not – all grounded in the family guilt regarding the lobotimization of Rosemary (there, I said it). But here is the real answer to the question; will the next generation of kids say that we placed the issue of disability rights squarely on the mantle of civil rights? Did we promise fidelity to the Constitution? Did we act as Martin Luther King did in rejecting small compromises and declare the right to ultimate equality and justice. Did we join in the broader movement of the dispossessed and marginalized and enroll our families in the cause that sets our eyes on the arc of history? I think that our kids are smart. I think that they see the arc. I think that they believe that it bends towards justice.

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