In the excellent PBS documentary, "Lives Worth Living", film maker Eric Neudel takes the viewer on a journey through the history of the Disability Rights Movement.
A two-minute trailer is embedded below. I will wait while you watch it.
"Sometimes you need to hit people on the head with a 2×4 to get them to listen," she said. And she's right. Maybe not literally, but powerful, shocking actions do indeed wake people up.
What the activists did to shock and jar: they took hold of and occupied a federal building in San Francisco 35 years ago.
Forced the issue of access, of equality, of the importance of the ADA and Section 504 and necessity for them to be signed into law – to be given teeth, so to speak
Because like with the Civil Rights Movement, "Separate but Equal" is not equal. Stairs for a wheelchair user is not the same as a ramp. Enforced life in an institution is not freedom and access that is not equal is discriminatory.
The people with disabilities dissed their chairs and were crawling up the stairs of the building. Some chained their wheelchairs together – an extremely powerful impression was made, one of collective power, of vision, of protest at the injustice that was being dished out among those with disabilities and a demand for equality.
And a child led them!
"The days of segregation and inequality are over", he said, it was supposed to be the happy ending to that story.
Rather: it seems to be a story with many chapters.
What we have now is a national debate on the value of a life lived with an intellectual disability. There are hundreds – thousands – that say that those with intellectual disabilities are a terrible burden on our society. They "they do nothing but drain," weigh, weigh, weigh us all down.
Saying the exact same things that were said 50, 40, 30 years ago to those with physical disabilities. That if something functioned differently with your body or your senses, you really would be "better off dead."
These words echo. We hear them again. Hear them again and again, in the context of medical "advice", in the development of new prenatal tests like MaterniT21.
Parents of people with Down syndrome are strong written advocates on the value of the lives of their loved ones. From my own pro-choice community, Alison Piepmeier's voice is steady and strong in her article in the New York Times: Choosing to Have a Child with Down syndrome, as is Lisa Morguess in her post, "It's About Wanting a Baby." There are a plethora of voices from the pro-lifers, Patti aptly representing them in her post, "It's Also About Life".
Do you see what's missing here? We have the pro-choice people, the pro-lifers.
Who is missing?
Deaf as I am, I hear their silence more clearly than I hear anything else.
The people with cognitive disabilities themselves. The people like my daughter, Moxie, who have Down syndrome. Those with intellectual disabilities, with developmental delays.
I am not hearing them.
I am not hearing from that vast community whose very existence is questioned as being "worthy of life." I am not seeing them propelled into the type of action that shocks, that wakes people up. I don't see them rallying in front of federal buildings or even better, in front of hospitals, whipping around Down syndrome dolls dipped in gooey red "blood" dye, clamouring to end a debate that is as horrifying as this.
And in my heart, I think I should.
I want to.
I don't know how to make it happen, but I think it needs to.
I think this country needs to not just hear the voices of advocates and activists; it needs to hear the voices of those that are ultimately the most important stakeholders in this
And one last thought: