Hello and welcome everyone. I’m Julia Bascom, and I’m the outgoing Executive Director here at ASAN. Thank you all so much for joining me today as we celebrate self-advocacy and reflect on what our community needs in these turbulent times. This is our fourth year of holding our annual gala virtually, and I’m so grateful for everyone who continues to show up and help us celebrate safely.
Before we get started, I want to thank a few people. Thank you to the ASAN staff, without whom ASAN simply would not exist. Thank you to our sponsors, for their continued support and for helping us prioritize safety and collective access as the pandemic continues to unfold. Thank you to our panelists, for sharing their time and their wisdom with us, and thank you to our awardees, for their incredible work. And thank you to you, for joining us online and celebrating with us. ASAN wouldn’t be here doing this work without you. We need all of you, as self-advocates and allies, with us in the fight to build a better future for our community.
It has been the honor of my life to have spent the last 12 years working for ASAN, and the last 7 serving as our Executive Director. With your help, we have fought and won numerous policy battles and worked to make the disability community a political force to be reckoned with. In 2017, ASAN and the broader disability community helped save the Affordable Care Act & Medicaid. I still can’t believe we pulled that off–it wasn’t supposed to be possible. And we were just getting started.
We have made community living a priority, fighting for the HCBS Settings Rule and control over our own services. In 2019, we made sure that any proposal for universal health care would include HCBS, and we’ve helped craft legislation to improve and expand these services, like the HCBS Access Act. We have worked to address the systemic issues with our criminal legal system, including addressing police violence, structural racism, and the school-to-prison pipeline. In 2019, when the government released a draft public charge rule that would prevent many immigrants with disabilities from obtaining legal status in the US, we submitted public comments opposing the rule–and in 2022, when the final rule was issued, many of the provisions we fought against had been removed. In 2021, ASAN, along with COPAA, CommunicationFIRST and impacted families, secured a tremendous victory after challenging the Fairfax County Public Schools’ use of restraint and seclusion, paving the way for more challenges against seclusion and restraint throughout the US. We fought health care discrimination during the COVID-19 pandemic, and we’re pushing for those protections to be enshrined now in the updated 504 regulations. We have continued to fight to #StopTheShock, and have called on the FDA to reissue the 2019 ban as quickly as possible. With CommunicationFIRST and our allies, we developed the AACCENT Act to expand access to AAC and effective communication for all–and now we’re calling on Congress to pass it. And when the Supreme Court threatened bodily autonomy and self-determination for everyone in the Dobbs decision last year, we helped lead the disability community response.
I’m especially proud of the work ASAN has done to make policy advocacy accessible to as many self-advocates as possible. In the last 7 years, ASAN has released over twenty Easy Read resources on the issues that affect us, like community living, racial justice, and more. We have continually improved our Easy Read skills and trained other disability organizations on how we do it. Since 2020, we have released 53 accessible resources about COVID-19, including Easy Read and plain language toolkits and videos. In 2020, we began translating some of our resources into Spanish. In 2023, we released “Bienvenidos a la Comunidad Autista,” the Spanish translation of our introductory “Welcome to the Autistic Community,” first published in 2020. In 2019, we unveiled our proxy calling system, which enables people who cannot use a telephone to make calls to their elected representatives about the issues our community fights for. And in the last seven years, ASAN has trained 124 advocates through our Autism Campus Inclusion (ACI) Leadership Academy (that’s 206 total since the first training in 2012, which I remember fondly.)
For the last 7 years, and since ASAN was founded, we have fought to make the phrase “all means all” a reality. We have fought to include all our community members, including those with the most significant support needs, in the policies and programs that matter to our community. We have countered constant attempts to bring back functioning labels, institutions, sheltered workshops, and disability segregation. We have provided guidance on what ethical autism therapies look like and what genetic research should and should not be done about autism. Day in and day out, we tell policymakers that “Nothing About Us, Without Us” isn’t an impossible ideal but rather the minimum our community deserves, and that disability rights, neurodiversity, and autism acceptance are for all autistic people. And we still have a long way to go–but when the White House Domestic Policy Council held two roundtable discussions on autism policy last year for Autism Acceptance Month, for the first time ever, the majority of the non-government attendees were self-advocates.
So I’m overwhelmed and humbled by the progress we have made in the last seven years, even as we’ve contended with a global pandemic and many political leaders who are actively hostile to disability rights–or, sometimes, just the concept of human rights at all.
But I’ve also learned, over and over again, that in advocacy our success is often measured most of all by what didn’t happen. We stopped Congress from dismantling the Affordable Care Act and Medicaid–and we also fought back administrative actions to impose work requirements across Medicaid, weaken labor rights for support workers, completely roll back the Settings Rule, and a lot of other things I’m not supposed to talk about publicly. We’ve countered numerous attacks on the ADA from Congress and the Supreme Court, and we’ve successfully challenged pandemic triage guidelines in different states that instructed doctors not to save people with disabilities. Over and over again, we’ve fought to get bad policy that would harm people with disabilities out of gun safety legislation. We’ve kept bills to strip our community’s rights from passing, and we’ve shut down attempts to make it easier to institutionalize us. We’ve worked with reporters and helped them tell stories that are more accurate and less stigmatizing. We’ve built coalitions across movements and helped groups from outside the disability community fix policy proposals until they no longer inadvertently excluded disabled people. And when supporters of things like sheltered workshops, institutions, and segregated services have tried to sway Congressional offices–and they do, every day–we’ve made sure those offices heard the facts.
For the last 12 years, I’ve struggled to describe these kinds of victories to people, even though this basic, defensive work is unfortunately the majority of what ASAN has to spend our time doing. “This bad thing was going to happen, and then it didn’t!” is hard to get people excited about, especially when the bad thing was just the first domino in a long sequence that could have really harmed our community–but wasn’t on anyone’s radar yet. “This bad thing happened, but it could have been so much worse!” is even harder. Harm reduction is essential, but it isn’t sexy. And it’s exhausting and humbling to know that, more than 30 years after the ADA, after almost 50 years of the IDEA, more than 50 years after the deinstitutionalization movement took off–we’re still fighting to defend those fragile inches of progress. We are fighting to gain ground, yes, but also not to lose it. What we have is so insultingly insufficient, is so vastly inadequate to meet our community’s needs and honor our basic human rights…and it could all go away in an instant. There’s another court case to completely defang the ADA coming up this term. The system that supports some–but not nearly enough–people with disabilities to live at home has imploded. Basic civil rights laws and decades of constitutional precedent are crumbling as we speak.
So it’s a hard time to do this work. It’s going to be hard for a long time.
But there is honor in this work, too. We are fighting to keep the laws and protections that members of our community have fought and crawled and died for. We will not let our community’s sacrifices be in vain. We worked hard for laws like the ACA, the ADA, Medicaid. We’ve fought hard to ensure self-advocates have a voice in government. We are keeping those things, thank you very much. A life’s work of just defending those gains against ceaseless attacks would be enough. It would be a privilege. The generation before me closed my state’s major institution and made sure I could grow up at home. I want to push our freedom further–but if I’m forced to spend my time fighting just to make sure that the next generation can grow up at home too? I’ll fight that fight. What an honor.
Even when we can push change forward, the truth is that policy change is often slow and incremental. It is a marathon, not a sprint, and the revolution will not happen overnight. Change happens in small steps that are always inadequate and never enough. Landmark laws like the ADA or the ACA take years–often decades–to pass and still leave critical issues unaddressed. There is always more work to be done.
We can do better, we must do better, and we can never let ourselves be content until everyone is free. But that doesn’t mean those small steps aren’t worth fighting for. The current waiver system we rely on to support folks to live in the community is flawed, inadequate, and badly under-resourced. Millions of us go without what we need. We desperately need to advocate for universal access to robust, self-directed support. But that doesn’t make the waiver system worthless. To the millions of people relying on it today to stay out of an institution, it means a great deal. That matters, too.
What I am trying to say is: whether the fight is a glorious struggle for liberation, or the long slow slog of harm reduction and basic defense, we have to show up. Nothing is ever given to us. We have to fight for every inch of progress, every policy win, every little change. Even when we don’t win. Even when the best thing we can say is that nothing happened. Even when it can feel like we are stuck in place. But we have to show up. Our community is worth it. We are worth it.
And if we don’t show up, the other side will be more than happy to work for as long as it takes to turn back time. We’ve seen that they are more than willing to do that, to spend decades and decades slowly building power and lining up dominos until they hit a critical mass and can strip away rights we assumed were bedrock. So we have to show up. We have to keep building resistance, relationships, and resilience. We have to fill gaps, weave skilled and sustainable networks, and cultivate critical mass, so we have the power and the infrastructure to win the changes our community deserves.
We have to defend the changes we have made and the ground we have won. We have to prepare to push for more. This is a long fight, the work of many lifetimes. We have a world to win. We aren’t going to win it tomorrow. But we can win it someday–we just have to keep showing up.
I’ve been thinking a lot about sustainable advocacy and what the future of our movement looks like, because I know that it is time for me to take a step back. As I shared last year, I developed Long COVID in May of 2022. Like millions of other Americans, I am facing the reality of a new disability, a lack of effective treatments and services, and an inability to continue working. I will be stepping down as Executive Director at the end of this year, and the ASAN Board will conduct a search for a new Executive Director. More information on the search process will be available in the coming months. While the search takes place, my current deputy Avery Outlaw will serve as ASAN’s Interim Executive Director. You’ll hear from Avery in a moment. I am confident in Avery’s leadership and so grateful they agreed to step up, and we are working together to ensure a smooth transition.
I want to reiterate what I said last year: this did not have to happen. I caught COVID from my support person, who most likely caught it at his second job–yes, his second job, because my support person is essential to my having a good life, but the government doesn’t think he deserves to be paid a living wage. This is the case for millions of people with disabilities and our support workers across the country. The direct support crisis is a crisis about how much we as a country actually value disabled people, our dignity, and our inclusion. If we, as a country, valued people with disabilities, we would put our money where our mouth is. We would pay support workers living wages. We would ensure that this work is seen as the valued and necessary profession that it is, and we could ensure that every disabled person who needs support can get it, and that everyone can live with dignity, safely, in their community.
But we don’t. Our elected leaders have made different choices. And those choices have had real, tangible effects on so many people. Those choices mean that my support person has to work two jobs. And then the federal government made another choice and decided to stop fighting the pandemic, because it didn’t poll well and the people who were dying were mostly people like me. And now I am stepping down as Executive Director of one of the few national disabled-led disability organizations. Because our elected officials have demonstrated through their actions, over and over again, that they don’t believe protecting the health and well-being of people with disabilities matters.
This didn’t have to happen. This was the result of deliberate policy choices–and more to the point, policy inaction–on the part of our elected officials. This did not have to happen. But it did.
I want to be absolutely clear: we do not have the tools to treat Long COVID successfully right now. If you get sick, your whole life can change. Those odds go up every time you get COVID. And when you get sick, there is not going to be a safety net to catch you. You should know that if you have to stop working, like I do, it will likely take years to get on Social Security–and you’ll be very lucky to get it at all. Even if you are lucky enough to get benefits, you will be forced to live in poverty. If you are too tired to cook or shower, good luck getting help.
And none of this is new! People with many different disabilities have been living this reality for decades. This isn’t a new struggle. We desperately need significantly more research focused on medical treatment for Long COVID and similar conditions, but the holes that people with Long COVID like me are falling through–laughable public health policy, lack of paid leave, the utter inaccessibility of disability benefits, devastating underinvestment in services, a broken health care system, etc–are not new. The fixes for those structural problems aren’t unique to Long COVID. They’re the same things the disability community is fighting for already.
And all of that is cold comfort when it happens to you.
So I’d appreciate it if the disability community would keep showing up on COVID. Treat the truth like it matters. Don’t hold big unmasked events. Encourage people to get vaccinated. Think about how you can include immunocompromised and high-risk folks in your work and events. Recognize that Long COVID will be devastating to many of our folks, and that the risk goes up with every reinfection. Push for the structural changes to not just address this crisis, but prevent the next one. Hold elected officials accountable for their utter abandonment of the disability community. Don’t join them.
This is a bittersweet transition for me. I am not stepping back because I want to–I am stepping back because I have to. I love ASAN, I love the autistic community, and I love the broader self-advocacy movement created by people with intellectual and developmental disabilities. I have been doing this work since I was a teenager, mentored by the self-advocates who survived and closed my home state’s major institution. I love this work, and I go to bed every night thinking about how much more there is to be done.
I also want to acknowledge that often the most crucial work being done is not the work that gets a lot of attention on social media. A lot of the people doing it aren’t on social media at all. And I want to challenge those of us who are to take a moment and reflect on where we are spending our energy.
Social media has been a vital organizing tool for the autistic community. For many of us, it enables us to connect and interact with other people in ways we just can’t do offline. Online activism will always be a powerful tool for the autistic community, and online autistic spaces help many autistic people realize that we aren’t alone, we aren’t broken, and we can have a say in our own lives. Online autistic spaces saved my life, and I know that is true for many others.
Social media is also a very reactive place with a thousand different arguments going on at once. That’s just how it works, for every community. In activist communities–again, not just in the autism world–a lot of energy often gets focused on language. This makes sense–these mediums are often text-based, and language matters! Language has incredible power to shape the world. But when they become the foremost discussions our community is having, we should, occasionally, take a step back and look at the bigger picture.
I think a lot about an exchange I saw on twitter a few years ago–although I see different versions of it every week. A parent said that her daughter loved the institution she had put her in. In the tweet, she referred to her daughter as a “person with autism.” She received dozens of replies chastising her for using person-first language. She only received a couple of replies concerned about the fact that she had institutionalized her daughter, and wanted to make it easier for other families to do the same.
I want to suggest that the problem with person-first language or functioning labels or other problematic language is usually not the words themselves. It’s what the words are used to do. When a parent of an autistic child talks about how their “child with autism” loves the institution they live in, the problem is not that they used person-first language. It’s that they’re talking about institutionalizing their child! Yes, terms like “profound autism” are harmful. These terms are vague, poorly-defined, perpetuate dangerous stereotypes, and don’t tell us what exactly the autistic person needs help with. But the bigger problem is what the people wielding these terms are trying to use them to do.
Let me be very clear: the people who champion terms like “profound autism” want to institutionalize autistic people with higher support needs. They want to institutionalize non-speaking autistic people and autistic people with intellectual disabilities. They want to give institutions new names and fresh coats of paint and then open them back up to warehouse the autistic people that they deem “too severe” to live in the community. They want to deny any agency or autonomy to autistic people who have complex support needs and instead funnel them into guardianship, institutions, sheltered workshops, and lifelong ABA, in segregated settings where they will never, ever have a chance to live ordinary, self-determined lives alongside everyone else.
I know this because they say so. They say so in their organizational position statements on their websites, in the policies they champion and the ones they oppose, in their interviews, and in their op-eds.
They want to legitimize the idea that there is a “good” and a “bad” autism. They want “bad” autism to mean that you are isolated and segregated and your life is controlled by other people. And when we ignore those explicit goals in favor of scolding about person-first language, we help them. When we only use the language of neurodiversity to talk about people who need less support, we help them. When we cede the idea that “support” means “control” and that services for autistic people with the greatest impairments must be more restrictive and segregated, we help them.
And what we should be doing, with one loud, clear voice, is saying “NO!”
We should be saying no, we will not let you institutionalize and abuse some of the most vulnerable members of our community. We will not let you divide autistic people into groups of people who are too “severe” to make their own choices and people who are too “high functioning” to need any support. We will not let you say that there is a “good” autism and a “bad” autism. We will not let you bastardize the term “neurodiversity” into a smokescreen for hurting the most vulnerable autistic people. We will not let you say that human rights are only for those of us who can talk, or test well, or live by ourselves.
It is absolutely true that some autistic people have significant, complex support needs and disabilities that are at times, with the resources we have right now, difficult to address. It is true that there are autistic people who will never live without 1:1 24/7 support, or more. It is true that there are autistic people in crisis who struggle with truly dangerous behaviors. It is true that there are nonspeaking autistic people who we have not yet found an easy or adequate way to communicate with. And it is true that our education and health care and service systems often do not live up to their promises, and that many of these people and their families are being utterly failed by what has been offered to them.
But none of this changes what someone’s rights are.
Inclusion is for everyone. Self-determination and autonomy are for everyone. Supported decision making and control over your day and your own life are for everyone. Self-advocacy is for everyone, even when it looks like a “behavior” at first. Inclusion and belonging in the broader community are for everyone. Life on our own terms is for everyone. Neurodiversity is for everyone.
Yes, there are autistic people who need intense support round the clock. “Support” should not mean “segregation.” “Care” should not mean “control.” No label, no diagnosis, no behavior, no support need changes this. The only criteria for human rights is being alive.
Stuff like this is the reason the first self-advocacy groups were literally called People First.
These are not ideas I made up. They have been painstakingly articulated for decades by people with intellectual disabilities, by institution survivors, and by people with complex disabilities who need 24/7 support. They have been born out by decades of research and practice. Most people with these disabilities, including autistic people, are still not given access to the supports they deserve to make these ideas real. That doesn’t mean it’s impossible. That doesn’t mean we give up. It means we fight harder.
We have an obligation to those members of our community to not leave them behind. It is one of the most important obligations our movement has.
So I want to challenge us to reflect on where we’re putting our energy. I want to challenge us to draw closer to the core of our movement. And if you haven’t already, I want to challenge you to build real relationships with self-advocates with intellectual disabilities. They’re not always online, and they don’t always use the same jargon you might be familiar with. But they exist, and they are doing powerful work. They have been for a long time.
Go to a People First meeting, or a meeting of your local SABE chapter, or another meeting for people with intellectual disabilities. Listen to what they have to say. Be in community with the people there. Build relationships. Learn from the people without whom there wouldn’t be a self-advocacy movement. Learn from the people who lived in state institutions. Learn from the people who still live in group homes and still work in sheltered workshops. Learn from the people who escaped lives like that. Practice allyship. Figure out how to include and center them in your advocacy, and how to support theirs. Become co-conspirators. You will be better off for it. And so will our movement.
The future of the self-advocacy movement is strong. I want us to be stronger. We are in a turbulent, changing time, like everyone else. But I know that we can navigate these rocky waters and stay true to our North star.
Already, I take great joy and comfort in the fact that our movement is tangibly stronger than it was when I was a teenager. As Executive Director, I have met countless self-advocates doing incredible work to build a better world for our community: training health care providers, fighting to end subminimum wage in their states, supporting AAC users, creating resources for families, defending gender-affirming care for trans autistic people, protesting restraint and seclusion, creating local peer support networks and mutual aid, running for office, leading transformative research, preserving our history, cultivating autistic culture, building deep partnerships across movements, and so much more. I know our community will keep showing up for the next generation of autistic kids every day, and I know ASAN will keep doing everything we can to equip our community with tools for systemic advocacy and powerful change.
Over the past year as I’ve navigated medical leave, ASAN’s incredible staff have kept us running. We’ve fought back against attacks on trans autistic people, released several new resources and started drafting even more, trained people who use community living services on their rights, continued the fight to #StopTheShock, weighed in on critical regulations and federal policy developments, and held a major symposium with autistic people, researchers, and autistic researchers to discuss a research agenda that reflects our community’s needs. I’m confident that ASAN will continue to thrive in my absence because we’ve already shown that we can.
There has been so much discussion of our political leaders and disability this year. All of it bad. Regardless of how you feel about a given politician, weaponizing disability to argue that people who use mobility aids or people with cognitive disabilities cannot lead is wrong. It is possible to condemn a politician’s actions or inactions without relying on ableism. And yet, here we are. So I want to be clear that disability and leadership are not incompatible, and that just as elected leaders have dozens of staffers buzzing around them making sure they are wearing the right blazer and are on schedule and briefed for their next meeting, so too do many prominent self-advocate rely on elaborate scaffoldings of support you might not see.
I want young self-advocates to know that it is possible to be disabled and still do this work. It is possible to be disabled, to need help, and even to need a lot more help than me, and to still be a leader. It takes a lot of work, yes, and it takes time to get good at it. But it is possible. I have done this. I don’t have a college degree or any formal education in policy. That has been an asset: I have learned much more from other self-advocates and from people in the trenches doing the work than I ever could have on a campus. I want to make it very clear: the qualifications for doing this work don’t have to do with the letters after your name or the certificates and diplomas on your wall. The qualifications for this work are showing up, being ready to learn from others, doing your best, and learning how to mess up. Because you will mess up, we all will. But you try again and you learn and you do better. As Laura Hershey famously said, you get proud by practicing.
And finally, I want to see self-advocates who have more significant and obvious support needs than me in positions of leadership, too. People like Jordyn Zimmerman, Samuel Habib, and Hari Srinivasan are paving the way, following the tracks laid by Bob Williams, Mel Baggs, and Lois Curtis. I want self-advocates who rely on AAC and who need information in plain language and who have support people at work and who are obviously, significantly disabled to lead the way. I want to see them in real leadership roles, with the support they need to thrive, being taken seriously and making real change. Because if we only focus on promoting self-advocates who are more comfortable for nondisabled people to be around, we are never going to make real change.
I want to challenge my colleagues without disabilities here. It will take tackling structural and attitudinal barriers head-on to make sure people with the most significant disabilities are leaders, too. It will require doing things differently, taking more time, and breathing through discomfort. You will need to examine assumptions you didn’t even know you had about what a leader is and how they look and move and sound. You will need to change conversational norms and build more space into schedules. You will need to allocate resources differently, rethink priorities, and challenge your friends.
But you did those things for me. And I am telling you, there is a whole world of leaders out there who will absolutely blow you away if you will make room for them.
I have been the Executive Director of ASAN for 7 years now. The first thing I learned about being in a visible leadership position is that you don’t do it alone–you rely on your team, every day. The face of a team has a team behind them, and thank god for that. I have had an amazing team behind me every step of the way. And I would like to end by thanking all of them now.
So first, thank you to the current ASAN team: AJ, Alex, Avery, Dean, Donnie, Eli, Greg, Ianthe, Jean, Jules, Katherine, Larkin, Mar, Noor, Reid, and Zoe. Thank you to everyone who has worked at ASAN in the past–there are too many of you to list here but I appreciate every single one of you. And thank you to our founder, Ari, who brought ASAN into being at great personal sacrifice and made sure that all means all was written into our DNA.
On a more personal note, I also want to say thank you to my support person, Colton, and to the circle of people on Team Keep Julia Alive. Thank you to the colleagues who showed me how to lobby, write legislation, and take up space confidently in the halls of power. Thank you to my mentors, for making this work a little less lonely and a lot more possible.
Thank you to our many coalition and research partners, whose work strengthens our own. Thank you to everyone who ever noticed that self-advocate voices were missing, and invited us to the table. Thank you to our funders and donors, who provide us with the resources we need to do this work. And thank you to the participants in all our events: ACI, Day of Mourning, protests, webinars, galas, and all our other events. Your knowledge, work, and energy sustains ASAN and makes us a better organization.
We often say at ASAN that when we were first founded, people were shocked if a single self-advocate was in the room. Now, policymakers and those in power may not want us there, but they’ve learned to expect we’ll show up anyway. We’re slowly but surely approaching critical mass, rocking and flapping our way toward the day when all policy impacting autistic people is led first and foremost by autistic people ourselves.
This work is so much bigger than any one person. It has been an honor to be a small part of this movement. I cannot wait to see what our community does next.
Thank you all. It has been so wonderful to work with you and for you.
I’ll see you around.