Archive for November 17th, 2016
[Prepared text of a speech given at the Autistic Self Advocacy Network’s 10th Anniversary Gala on November 16th, 2016]
Hello! Hello, and thank you all so much for being here. How’s everyone doing?
Great. Great, that’s wonderful. I’m so glad to see you all here. We had a lot of internal conversations, over the last week, about how to go about throwing a party after the events of November 8th. And it came down to this idea, and I think it’s crucial, that joy has not gone out of the world. This is a somber time. We’re all feeling pretty grim. And as we look around and talk to each other and begin to figure out what we’re going to do now, it’s critical, it’s absolutely critical, to also set aside time to reflect on and commemorate and celebrate how far we’ve come and what we’ve done. Because, as Ari has reminded us, as Chai has told us, and as our awardees are about to demonstrate, we have come staggeringly far.
We know that change comes inch by inch–slowly, painfully, at an exhausting grinding crawl, and then sometimes all at once. We cannot move forward on grim determination alone. My job for these next ten minutes is to talk to you about what comes next, about what we do now, about what ASAN is planning and preparing for, and I have to tell you that the first thing has to be joy. We have to be able to remember and celebrate our wins and the truth that we fight for. We are looking at a long, long haul, and we’re only going to make it if we bring our joy and our love with us.
When we’re preparing for a trek such as this, it’s important to know that we cannot go it alone. The work of building strong, committed coalitions between the many communities which overlap with and make up the disability community is what will sustain us through the next few years. To return to a truism, “We must, indeed, all hang together, or most assuredly we shall all hang separately.” I am speaking to you as a disabled women, as a lesbian, as someone who loves and works and lives with trans people and people of color and people from different socioeconomic backgrounds and faiths and nationalities. We can hang together, or we can hang separately. These are our options.
Working in coalition, we have to mobilize our grassroots, right now, immediately, to defend and advance the progress we’ve made. Protecting the affordable care act. Medicaid. Deinstitutionalization. Self determination. Access to justice. As you can see in our annual report, ASAN has been systematically developing our capacity to produce accessible advocacy resources–guides to policy and action that people with cognitive disabilities, our families, and really just anyone who isn’t a lawyer can read, understand, and use. We have to build that Hidden Army, and grow our grassroots in places we haven’t before. In the past, ASAN has done a lot of very wonky policy work, and we certainly plan to continue that–let me know if anyone here wants to geek out over quality measures for MLTSS, and I’ll be there in a second! But now more than ever it is critical that we are giving our grassroots the information and the tools they need to advocate, to participate in our civic society, and to have not just a say, but the final word in decisions about our lives and our futures. Nothing about us, without us has never mattered more.
So we’re going to produce materials explaining what a bloc grant is, how public comment periods work, and how to visit your senator in their district office. We’re going to collect people’s stories about why the ACA and coverage of pre-existing conditions is so important, and we’re going to mobilize our networks to ensure that the healthcare we fought for eight years ago stays in place. We’re going to work with other organizations focusing on civil rights, voting rights, and access to justice. We’re going to make sure that whenever the minimum wage is discussed, disabled workers are included and subminimum wage is abolished. We’re going to keep fighting for Olmstead implementation and deinstitutionalization, because now is not the time to give up on life, liberty, and the pursuit of happiness. And we’re going to keep advancing our work in supported decision making and self-determination, because making choices is a human right, and human rights don’t come with 4-year waiting periods.
It’s going to be hard. Yes.
So we’ll do what’s hard.
We have always overcome impossible odds. It is something out of science fiction that we exist at all. Autistic self-advocacy, self-advocacy, disability rights and the community we have built–all organizing is science fiction, as Walidah Imarisha said, and when we organize we find ourselves building a new world. I draw strength and conviction in equal measure from the fact of our rich history. We have done so much. In just the last few years, we’ve seen an increased acknowledgement and acceptance of the fact that cure, as a concept, is not an ethical–or scientifically plausible–response to autism. Can you imagine? If you had told me five years ago that Autism Speaks would remove the word ‘cure’ from their mission statement this year, I would never have believed you. We have a lot left to do there, but we did that. The number of people with disabilities living in institutions has shrunk to a bare fraction of its peak. We did that. We defined what home and community based services mean, and as a result, the quality of life for people receiving those services has and will continue to increase as we restore autonomy, self-determination, and basic human rights. We did that. How long have we worked for those things? How hard did we fight? Is there a single person here who could call it easy?
There is so much more to be done. Even for each of the examples I’ve cited, enormous amounts of work remain–autism acceptance and self-advocate representation must replace words like “treatment” and “prevention,”; our people still trapped in institutions must be freed; we all know far too many people living nightmarish lives of quiet desperation in what we call on paper a ‘community,’ and of course even one person in that particular hell would be intolerable. The work ahead was already unrelenting, and as we look at the next few years, I think we all feel a little knocked back, a little desperate, a little panicked that after everything we’ve done, it could all be unravelled.
But when I think about our community, and when I think about our trajectory, I am still filled with hope.
We’ve built something incredible, something that has defied the odds, and we’re not done yet. We’ve fought hard for our existence. We’ve fought hard because the idea of ASAN is important: the idea of an organization run by and for autistic people ourselves, an organization capable of sophisticated advocacy at a local, state, and national level, taking on policy and legal challenges and working to ensure that wherever and whenever issues impacting the lives of autistic people are discussed, we’re there–not just sitting at the table, but leading the discussion. That idea is important, but it’s an idea we’ve fought to turn into a reality because it comes with tangible, real-world consequences. Self-determination, access to healthcare, community integration, communication justice–these are not academic theories but lived realities, and the policies we make and the arguments we have directly impact people’s lives. We are the organization that cares about the details, because we know that the details are where our lives are lived and lost. And as long as that’s true, ASAN needs to exist, bringing light to those details and pushing for a better world–now.
Prior to last week, when I was working on this speech, I had a great story to tell you about 2 different futures. That story is still true. So I want to talk for a minute about stories, about the future, and about the stories we tell for what the future can look like for autistic adults, adults with intellectual and developmental disabilities, adults with significant disabilities–whatever label we want to insert here. The stories we tell about disability, about autism, and about our lives set our expectations, and those expectations set up our futures. And right now we have stories for 2 starkly opposing visions for what we think life can look like for autistic adults.
The first vision is all about safety. Safety. Our best hope and our biggest expectation, we are told, is to be safe. In this vision, we are safe! We are so, so safe. Our housing is safe–designed specifically to keep us safe. Safe, special housing, with all of us in one place to keep us safe. There are devices that can track us to ensure that we never venture beyond safety’s borders. We have guardians, to ensure that all decisions related to us are sanctioned and sound and safe. If we work, we are working somewhere safe, of course, optimized to us and our needs and the needs of our also autistic, also disabled coworkers–safely supervised, of course, by someone without a disability. Thank god. We are kept safe in a cocoon of specialized services, cradle to grave, from the behavioral modification that teaches toddlers to stop flapping for their own good all the way through to the adult ABA that providers assure us is really just person-centered, since the reinforcers are tailored to our specific behaviors.
We are so, so safe.
Now, in case my tone hasn’t tipped my hand, I should clarify that this is obviously a story that ASAN and self-advocates find to be deeply dystopian. But it is difficult to articulate an anti-safety agenda, as it were. Safety is good! We want people to be safe! It’s an understandable motivation! And yet we know that safety isn’t safe. We know what the abuse rates for ‘safe’ segregated placements are. And we’ve seen this before. We have a century and a half of history showing us that institutions, campuses, farmsteads–whichever you’d like to call them, and when you line the descriptions up over time it becomes impossible to tell the difference–aren’t safe, even if they have a lovely pool and a beautiful garden. Any time you take a group of marginalized people and put us together and isolate us, safety leaves the equation. Every time.
So when we are choosing between possible futures for our community, I think we can do a little better than safety. Certainly our community deserves better. But what would that second story look like? What stories do we want to tell?
I want to tell stories with unlimited options. I want autistic people to be safe–but I also want us to be happy, self-determined, included, valued, and unremarkable. I want our lives and our happiness to be commonplace. I want us to be people–we are people! With boring, ordinary lives. Lives that we are in charge of. I want each of us to be free and supported to be living the best life for each of us. I want the same thing we want for everyone else.
And, handily enough, I believe we have a right to that. I have a right to be in charge of my body and my life. I have a right to live free of abuse and neglect and discrimination. I have a right to make mistakes, take risks, and to be bored. I have a right to participate, to access the same things my peers access and live the same boring, ordinary, beautiful life.
And I know that right now, on November 16th, all this talk of rights feels like science fiction. But listen, we grew lettuce in space this year. Did you know that? We grew lettuce in space this year. We are living science fiction. We can do this. We’re already doing this. The ADA generation has grown up, and with the strength of disability rights law at our back and the blessings of our community in our hearts, we are changing what the world looks like. We’re changing who gets to be in the story. We’re changing what the story is.
This is not the end. This isn’t even the beginning. This is the long, hard middle that gives every story its heart, its meat, and its staying power. We are beautiful and we are strong and our shared humanity is at its best when we’re all in. And that’s what we’ll be working toward for the next 10 years.