Hello everyone! Hi! Thank you all so much for being here–it’s great to see so many folks gathered together to celebrate self-advocacy. My heart really needed this. I want to make sure and thank our sponsors for making this night possible, particularly our Gold sponsors, Anthem and Paramount. Thank you to John, for ushering us through the program, and thank you to Alice for sharing your brilliant, movement-defining thoughts with us. Finally, I want to thank all of the ASAN staff who have worked so hard to make this event come together, especially our Program Coordinator, Haley Outlaw, and our Director of Operations, Zoe Gross. This event would literally not be possible without you guys. We’d all be standing around on the sidewalk without any tangles.
We’re at a new venue this year! Autistic people famously hate change, so I want to share the story behind our 3 venue changes over the past 4 years. This is some real behind-the-scenes intel here, never before revealed. As you all know, for many years, ASAN hosted our gala at the National Press club down the street. It was a good venue, and a good fit for what we wanted to do. In 2016, after we had already held our gala, the National Press Club hosted some events for white nationalist groups. We thought this was a problem, and expressed to them that we were concerned about the safety of our guests–many of whom are disabled, trans, and people of color–at future events. We were, very literally, shouted down by their director. So we switched to The Hamilton for the past two years, and had a really lovely time. This past spring, we were contacted again by the National Press Club, because they wanted us to know that they had changed their policy and would no longer be hosting white nationalist events. They said our decision to switch venues was a major driver of that, and they asked us if we would come back. We started making arrangements to switch back to the press club, and then we realized:
We had gotten too big.
And that’s why we’re here today. Because, over the last three years, we have stood by our convictions and fought to make sure that when we talk about and practice and celebrate self-advocacy, we bring our whole community with us. And now we can’t fit in the rooms we used to use, because our community keeps growing and growing and growing.
So. As you can see, this new place has a lot of space yet to fill. I’m sure we can outgrow it one day if we put our minds to it.
I have one last little fun fact before I get into it. This is our ninth annual gala, and it’s also ASAN’s 13th birthday as an organization. We’re celebrating today on November 13th, which means this is, technically, our golden birthday. Just a fun fact for all you math nerds out there. I know we have a few. More importantly, ASAN is 13 now. So, if you thought we were annoying before, watch out–we’re in our rebellious stage now.
When I think about this year, I think about it as a series of contrasts. The most obvious contrast, clearly, is 2018 versus 2019. Look what we can do when we’re not fighting for our lives! We launched our proxy caller tool, enabling people whose disabilities make phones complicated to still call their elected officials and tell them what we think. We’re putting out four different Easy Read policy toolkits, covering the federal budget process, self-advocate priorities for community living research and policy, the HCBS Settings Rule, and the right to vote. We worked with the National Council on Disability to put out a report on the rights of people with disabilities to organ transplants, and we explained the dangers of Quality-Adjusted Life Years to anyone who would listen–and a whole lot of congressional offices that didn’t want to. We fought back renewed attempts to scapegoat people with mental health disabilities for gun violence. And that’s just ASAN–our friends in the rest of the disability rights movement have been moving full steam ahead too, fighting with us to end subminimum wage, realize the promise of Olmstead, and do so much more.
And, because it’s always worth mentioning, I want to point out–it’s been three years, and we still have the ACA! Medicaid is still here, and so is the Settings Rule! The ADA is going strong! No matter how hard it’s been, we’ve held on to some of our biggest victories, and we’re fighting against attempts to roll back our rights every day with a practiced dedication. As our colleagues in the immigrant justice movement know better than any of us, we can’t rest yet–but when we fight together, we win.
Other exciting contrasts come to mind. When ASAN started 13 years ago, we were a handful of people in a few different states with laptops–you know, what we call a “national grassroots organization.” But we knew what our community needed, and we were willing to work ourselves to the bone to get us there. And now, 13 years later–look at all of the different ways we can mobilize people! Look at all of the places where we can show up for our community now! We have trained over 100 autistic college students in community organizing through our summer leadership academy. Our last Day of Mourning had 42 different sites in 5 different countries. We have worked to get legislation introduced that would expand access to effective communication for nonspeaking autistics and other AAC users, and bills that would expand access to home- and community-based services for people with all kinds of disabilities. ASAN’s work was central to getting long term services and supports, including an end to waiting lists and the institutional bias, included in all three of the universal health care bills that have been introduced so far this year. We’re suing Fairfax County Public Schools, along with students and families, for restraining and secluding students with disabilities. The sheer number of things on our agenda for 2020 make me exhausted–but also incredibly excited. There is so much work that needs to be done, and so much unmet need in our community–and every year, we are able to take on a little more. We’ve come so far.
There’s another, more frustrating contrast that I’ve run into a lot this year. It’s the gap between the basic set of standards for advocacy we see in the broader disability world, and the standards in the autism world. For those of you with the good fortune not to spend your days up to your eyeballs in autism politics, I’ll give an example. This year, there were two different bodies created to oversee major policy decisions about a disability community. The first was an advisory panel for the National Quality Forum tasked with setting standards for person-centered planning in Medicaid. The second was the Interagency Autism Coordinating Committee, or IACC, placed within NIH to oversee federal investments in autism research.
When the NQF panel was announced with only one identifiable self-advocate and no leadership from the I/DD or mental health communities, the disability community revolted. ASAN, in conjunction with NCIL and several other groups, led a number of letters to NQF, CMS, and the Administration on Community Living, and we received broad support from across the disability community. I remember bringing up this issue, almost immediately after it became public, to the head of ACL in a meeting about another topic–and I remember being floored as a dozen other advocates from a wide range of organizations, without any preparation, immediately jumped in to back me up. That kind of thing doesn’t happen in the autism world. There was unquestioning agreement that the status quo was unacceptable, that self-advocates would lead the fight, and that meaningful representation was non-negotiable. We won a partial victory by the end of the summer, and we won that thanks to the immediate, broad-based support we received.
The debate over the IACC occurred among autism organizations, and so it played out very differently. ASAN, as the lone self-advocate voice in the room, urged for a real increase in self-advocate representatives, who made up less than 7% of the total representation on the IACC. We had the support of a few major cross-disability organizations. But the other autism groups opposed us. Our request was for half, then one-third, of the public members of the IACC to be self-advocates–which still would have been less than 25% and 15%, respectively, of the total membership. But we were told that that was too much. We were being unreasonable. We should be happy with what we get already. The federal government spends over $292 million dollars on autism research each year, which represents over 80% of the total funding of autism research nationally. As autistic people, we don’t have a right to any sort of meaningful oversight over that. That was the message.
When challenged by other disability organizations on this, the other autism organizations–all of which lack significant self-advocate staff or leadership–responded that our request was too controversial and would jeopardize the passage of the bill and the millions of dollars it authorized. Of course, the reality is that if we all had presented a unified front, the change would have been made easily, as it didn’t cost a single dollar. But they didn’t want more self-advocate voices. Autistic people didn’t have the support of the organizations that make millions of dollars in our names.
In the end, we got one additional self-advocate representative on the IACC.
This was part of a broader trend in 2019, which saw a parade of articles in various news outlets attacking the neurodiversity movement. Over and over again, the criticism was the same. Civil rights are okay for some autistic people, we guess, if you really want them. But some autistic people are just too disabled for that. The neurodiversity movement should back off and let the members of our community with the most significant disabilities be segregated, silenced, and warehoused, and we should be grateful for what we get. We’re at the table now! What more do we want!
Ultimately, that’s the contrast that I’ve thought about the most this year. The way self-advocates are treated in these types of discussions, versus the way nondisabled people are. Whose voices matter? Who gets to be real? Whose is listened to, who is seen as an authority, and who is chastised because tokens should be seen and not heard?
Every year, an organization called the International Society for Autism Research, or INSAR, holds a big international meeting. Autism researchers from all over the world come to present their findings. Most of the research featured is not the kind of research self-advocates find particularly ethical, useful, or compelling–but as the number of autistic researchers grows, more and more autistic people have started to show up too. It was estimated that approximately 5% of attendees at INSAR this year were openly–openly–autistic. This, obviously, was a bridge too far. INSAR had begun to make modest measures to improve accessibility at the conference, like introducing the idea of flap-don’t-clap. This caused an uproar which generated multiple different news articles. In response to self-advocate suggestions for more research focused on autism across the lifespan and on services and supports, INSAR announced a renewed focus on basic biology in the name of prevention and cure. Are you an autistic person who wants a say in how millions of dollars are being used in your name? This is not your year. The people in labcoats know best, as they always have.
In a research project not related to autism, I was asked to advise on the method of presentation for some data regarding the lives of people with developmental disabilities. I encouraged the researchers to prioritize accessibility in their presentation and make sure they made materials that self-advocates can use, too. The response I received was:
“That’s a big ask.”
It’s a big ask, to make sure the people the data is about can understand what the data says and how it’s going to be used.
That is not a big ask. It is the absolute minimum.
Self-advocates are used to this. We know that our asks are going to be routinely described as the ceiling, when in fact they are barely even the floor. The basement. Sub-basement.
As our founder, Ari Ne’eman, likes to say, autism researchers often seem to wish they were geologists, conducting research on subjects that don’t talk back. As this year has shown us, the problem is hardly limited to researchers. But we aren’t rocks, and if you can’t handle self-advocate feedback, you need to find a different job.
I am reminded of another quote, by the late John Dingell. “Elected officials do not have power. They hold power — in trust for the people who elected them. If they misuse or abuse that public trust, it is quite properly revoked (the quicker the better).” Autism and disability organizations are not typically run by elected officials, but the premise applies. You have your job because of us, because of autistic people and people with developmental disabilities. You are accountable to us. If you are making millions of dollars off of us, if you are building careers off of us, if you have named your organization after us and if you are advocating on our behalf, then we have an absolute right to tell you what we think about that. Your legitimacy is derived from us. That means you are accountable to us.
In what universe is this controversial?
At the end of the day, conversations about self-advocate representation, participation, and leadership come down to a couple of very simple questions. Do we exist? Do we have a right to an opinion about that? Or not?
These questions are insulting. Of course we talk back. We aren’t rocks.
Our honorees are talking back. Dora Raymaker is pioneering the practice of community-based participatory research in autism science, placing autistic people at the center of research about our lives. Sara Luterman has spent many years talking back in outlet after outlet, countering myths, providing autistic perspectives on stories about us, and finding ways to lift up marginalized voices. Connie Choi and the Protecting Immigrant Families coalition have spent the last several years talking back to the President of the United States and making it abundantly clear: no, we aren’t going to take this. Families belong together. No one is a burden. Everyone matters. And at this event, the point of this gala is that we celebrate that. We celebrate talking back.
But my challenge to you all–to all of our nondisabled allies in this room, and those who couldn’t be here tonight–is to ask yourself: how will you respond when we talk back to you? To your friends? When we say, no, that’s not ok? When we say, you need to do better? When we draw a line that is harder than yours? When we say, this isn’t about best practice, this is a moral issue? When we say, Just Do It? When we say, you are getting this wrong and you are hurting us?
This is hard stuff. It is the hard work of allyship. But please consider this a courtesy heads up, because ASAN has invested so many of our resources into talking back. You are not just going to get it from us! We have invested in toolkits and trainings to ensure that when self-advocates have a seat at the table, we aren’t content with table scraps. We’ve developed an entirely new way for folks to communicate with their elected officials, and we’re building a grassroots that is used to regular campaigns and mobilizations. We are fighting for the right of every nonspeaking person to have access to robust, effective communication; for the right of every person deemed incompetent to make their own decisions with support; and for every person to control the supports they receive. We are deeply engaged in community-based, participatory research about how we define autism itself. And, most importantly, we are making sure every person in our community can exercise their right to vote.
It is popular to say, in disability advocacy, that advocates are speaking for those who cannot speak for themselves. ASAN has always been very clear that no, that’s not it. We’re not speaking for anyone. We are fighting for everyone’s right to speak for themselves. We all have a voice, no matter how we express it, and we are all going to be heard. That’s what ASAN is about. That’s the whole point.
Nothing About Us, Without Us isn’t a fun idea. It’s a promise. I’ve said that before, and I’ll say it again. We are not rocks. We are not passive subjects. We have a voice. And we intend to use it.
We know that using our voice has never been more important than it will be in 2020. We will vote, we will shape policy, and we will show up. We will fight for a better world for our entire community. As self-advocates, as the disability community, and as members of our democracy, we will make it clear: nothing about us, without us!
I hope we can do that with the support of a broad coalition of allies. I hope that next year, I can have a happier speech. I hope that ten years from now, the bitter fights we’re enmeshed in won’t even be controversial, because we will have moved on to a future that is more equitable, more inclusive, and more reflective of the communities organizations say they serve. I hope we’ll be past arguing over 7% or 15%, because we’ll have moved on from table scraps and into the real meat of what our community needs and how to get it. I hope self-advocates from all sorts of backgrounds, who communicate in all sorts of ways, will be leading the conversation. I hope that when we say something is wrong, we aren’t the only ones saying it.
We have gotten a lot of practice, these past 3 years and these past 13 years, with the discipline of hope. I think we’re ready to move on to the next step.