July 31, 2011

Strong, entitled, impolite.

Over the weekend, I gave a speech, the closing keynote at the 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.

14 comments:

Elizabeth said...

Ready.

Miss Shuganah said...

i wrote a blog post that addresses this very subject of basic human rights.

Landscaper! There's a Weed in My Sod: Why We Need Inclusion in Classrooms and Community Never mind my commentary. Watch the video, In My language if you haven't seen it. This video both haunted me and humbled me. And what she says in the end is so powerful, ","Only when the many shapes of personhood are recognized will justice and human rights be possible," That pertains to AM Baggs. It pertains to Kid O and to Schyler (apologies if I didn't get her name right.) But really it pertains to all of us because i suspect that we all, in our own way, struggle to be normal or to come to a place of acceptance.

You are right. The folks who talk about entitlements have no idea what parents like us are up against or what our kids are up against. The fact that we manage to get up each day is amazing in and of itself. The world is full of breathtakingly ignorant people.

Amanda said...

Ready and willing.

Shasta said...

A very important post. Thank you. I hope, too, that our children can one day fight the fight with us, no matter their capabilities.

Kim said...

Really, really honored to be fighting with you, as an educator of these amazing, strong, determined kids.

Lisa B said...

http://www.ncleg.net/Sessions/2011/Bills/House/PDF/H344v7.pdf

This has just passed here in NC... basically if your kid has been in a NC Public school for the past two semesters you can take them out to homeschool or put them in a private school and get a $6000 tax credit. I have homeschooled my child for the past 12 years and had no help from anyone... which is most cases for me has been a good thing because it also means no interference from the state too! Lots of parents are excited about this tax credit but to me it seems like we are being paid to go away! Once you take your kid out of public school you have given up the IEP, the FAPE etc ... you are ON YOUR OWN! And it reads like it's only for the first year because once you take them out you no longer fit under the "enrolled for the past two semesters" rule. Again though my main objection is that I feel like we are being fooled into taking our special ed kids out of the system so they don't have the "problem" anymore to deal with. In NC special education... heck regular education is pretty crappy but this feels like going back 30 years in special education advocacy!

Maggie World said...

Fighting every day.

Roo's Mom said...

Amen! I'm ready. At the risk of sounding very impolite right now, I have often wondered why so many who call themselves "Pro-life" only apply that to getting the babies born. After that, it's often all bets are off. I'm pro-life across the entire spectrum, including protecting the right of all people with disabilities to have at the very least the same access and opportunities everyone else has.

amylia said...

"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."

Pitch perfect.

(Fist raised)

Julie said...

My husband and I attended the Angelman Conference last week and your speech was one of the highlights. Thank you. We felt very encouraged. Your comments were certainly appropriate. I think we all left feeling more empowered and equipped for the battle...

Miz Kizzle said...

We can start by repealing Bush's tax cuts and move on from there to bringing our troops home and dismantaling the enormous, useless bureaucracy that is Homeland Security. Next we eliminate mandatory minimum sentences for nonviolent offenders and quit jailing more people than any other nation in the world.
Then, maybe, there'd be enough money to fund programs and services for the people who really need them.

luvmyangel08 said...

My husband and I attended the Angelman Conference and your speech. Thank you so much for sharing. I read "Schuyler's Monster" before going to the conference and thoroughly enjoyed meeting you and your family through it. We too are ready for the battle.

Ajax said...

Wow. That's exactly how it strikes me to hear of the government taking away these programs. I just posted on Elizabeth's recent post about California proposing funding cuts. We HAVE to fight until these services are given the recognition they're afforded. They are NOT luxuries. They're civil rights. I'll continue to write letters the powers at be in political office. I'd like to take up arms with you. I'll do anything i can. You are totally right.

Ajax said...

I meant to link the post: smells like b.s. part 3456789. Maddening. We need to fix this.