2011 Angelman Syndrome Foundation Biennial Conference. It was a somewhat different kind of speech for me, more of a call to arms than I've really given in the past, and it was unproven. It seemed to go over well, and I hope I get the chance to deliver it again, but still. I wondered if it was appropriate.
If I'd been paying more attention to the whole debt ceiling debate going on in Washington, and in particular who was increasingly likely to get thrown under the budget cutting bus in whatever deal was made, I would have realized that yes, my approach was appropriate. Appropriate, and necessary. I have a feeling that a great many of us are soon going to find ourselves standing up and throwing rocks at giants.
Anyway, here's a short excerpt from the speech I delivered, the part that feels the most relevant.
Who's going to speak up for our kids?
This is the fight. These are the kinds of things that lurk out there, the attitudes towards a segment of our population that struggles for respect like no other. We simply must make significant cultural and societal changes and acknowledge that the struggles of those with disabilities are nothing less than human rights issues.
This is the heart of our fight, because it extends to every aspect of our children's lives, from the care they receive from the medical community to the seriousness they are afforded by their schools to the resources allocated to them by our political leaders. We've all seen it, time and time again. We've watched our representatives in government approach funding for disability programs and special education as if these are the nice things we can afford when times are good, like luxuries. They behave as if cutting these programs is reasonable, as if life will somehow wait for our kids until the good times return. More and more frequently, I hear these programs referred to as "entitlements", spat like a dirty word, as if our expectations constitute an unreasonable drain on society. And I'm not even talking about this from a partisan position. We've all heard political figures from both parties as they put our children's quality of life on the table while protecting their own special interests. I've come to believe that the term “independent voter” has come to represent someone who is equally appalled at what both parties are doing. I wouldn't be at all surprised to discover a great many of these appalled independent voters in the disability community.
What I have to say to you today is something that you already know. As parents and family members, as caregivers and therapists and teachers, we are the voices for our kids and our loved ones. We are the believers. So much of the world sees our disabled loved ones as powerless, so it is us, you and me, who must be the forces of change. We have to toughen up. We have to stop accepting scraps from the table of human decency. We must be the ones to lift the expectations of society. We have to be the ones to write the narrative of this fight in terms of civil rights, of basic human rights. Our voices must be strong, they must be entitled, and, on occasion, they must be impolite.
I believe in my heart of hearts that in terms of legal protection, in terms of funding in education and adult services and accessibility, and most of all in terms of a fundamental change in the empathetic and compassionate hearts of our fellow citizens, the fight for equality for children and adults with disabilities will be the next great civil rights battle in this country. But for that to happen, our loved ones, the ones who depend on us for so much else, they will need for us to stand up and raise those strong, entitled, impolite voices on their behalf. Are we ready to do that?
I think we are.