Julia Bascom’s Speech at ASAN Gala 2018

Hello! Hello, and thank you all so much for being here. How’s everyone doing? Great. Great, that’s good. I’m so glad to see you all here. I’d like to thank our sponsors for so generously helping ASAN pull this event together and do the work that needs doing year-round, and I’d like to thank our wonderful MC, Maria, for leading us through our program tonight with her signature charm. And Liz–I don’t know how I’m going to follow your speech. I should have gone first! Thank you for your leadership.

First, the good news.

It has been two years, and I am proud to announce that the Affordable Care Act is still the law of the land! Medicaid continues to exist. The ADA is protected. The settings rule has not been reopened. Yes there have been losses, but these are not small victories. I know I’m not the only person in this room who worried that we wouldn’t make it this long.

There’s been a palpable sense of relief over the past week. This is a nonpartisan event, so, who can say why. But one could speculate many reasons for relief. Relief that democracy, citizen engagement, and advocacy really do work. Relief that the 16-hour days we spent fighting to save the social contract had an impact. Relief that we might, finally, get a brief moment of respite. Relief that, with the ACA and Medicaid protected from Congress, we might finally be able to add an affirmative agenda on to our ongoing work to defend every inch of the progress our community has fought so hard for.

We did it. It mattered. We showed up, we put everything on the line, and it worked. As it turns out, “Nothing about us, without us,” isn’t just a mantra–it’s a promise. If you try and make policy that will profoundly alter, or end, our lives, and you refuse to even acknowledge us while you do so, there will be consequences. We matter. We are never going back.

And now the whole world knows it.

Two years down, two to go.

These have been hard years, yes, but we’ve wrung some good out of them. I’ll get back to that good, I promise, but first I need us to take a tour through the bad. Stay with me now, because here’s the thing: we have to recognize that, even as we’ve been victorious in the health care battle, we’ve had to pause or neglect much of our affirmative agenda. We have a chance, in 2019, to return to that, but we need to take a moment to feel the weight of that, and recommit to the sense of urgency these issues still deserve.

It is still legal to pay people with disabilities less than minimum wage. The Judge Rotenberg Center is still open and still torturing disabled children. Some of these children aren’t children anymore–they’ve been there for 20 years. Hundreds of thousands of people with disabilities are still trapped in institutions, and there are still providers fighting for the right to take pictures off the bedroom walls of people with intellectual disabilities, to restrict our food, to control who we see and when we’re allowed outside. Some of these forces have even gained ground while we were putting everything into the fight for our lives.

There are constant attacks on our civil rights from the very offices charged with protecting and uplifting those rights. The threats faced by the disability community are hardly unique, as we watch this administration attempt to systematically turn back the clock on racial equity, criminal justice reform, voting rights, LGBT equality, reproductive rights, immigration justice, and so much more. We must stand in solidarity with other communities under siege. They are us, too. Autistic people are people of color. Autistic people are immigrants. Autistic people are women. Autistic people are queer, and autistic people are trans–in fact, statistically speaking, autistic people are actually more likely to be queer and trans. We are in every community, and we always have been. ASAN is still hashing out what it looks like to have that reality drive our work, but at a minimum it has to mean that when systemic injustice is waged by our government against a part of our community, we recognize it for the attack that it is, and respond in kind.

We all know that there have been times the disability community has struggled to recognize ourselves in the faces of other communities–but there are also times when we have succeeded. When the Trump Administration launched its devastating policy of family separation this summer, a wide swath of disability organizations looked at children in cages and saw our own history. Institutions are bad. Institutions are deadly. We know this better than most, and growing evidence confirms that keeping children or families in cages is just as detrimental even when no one has a disability. Medical negligence is responsible for over 50% of the deaths in ICE facilities, and sexual abuse is rampant. No one who has ever stepped inside an ICF would be surprised. The disability community knows this, and we know we have a responsibility to raise our voices in opposition. To quote New Hampshire People First: Institutions are bad. Close them.

But while our initial response may have been strong, I am worried that we have not followed through. It’s not enough to say something is wrong. Your job isn’t done until you’ve made it stop. How many disability rights organizations wrote comments opposing the new proposed Flores regulations which would permit indefinite family detention? Every budget cycle, massive coalition letters are circulated urging Congress to defund ICE–to close the front door, in disability parlance–but I don’t see many of us signing on.  How many of us have made the connection between youth detention in ICE facilities and youth incarceration in our nation’s prisons and jails?

And even if we stay firmly rooted in traditional disability spaces, our follow-through has not exactly been impeccable. We are in the midst of a renaissance for neo-institutions. Everywhere we turn, large congregate settings calling themselves farms or gated communities or villages or apartment complexes or, my favorite, “neurodiverse intentional communities,” are springing up, eager to take in the first generation of developmentally disabled young adults who grew up with an expectation of an ordinary life in the community. These places are shot-for-shot remakes of the first institutions, with their scattered cottages or large dormitories, their verdant campuses and hollow promises of understanding and safety and skill-building. We are seeing history repeat itself. And history isn’t history: there are still approximately 77,000 people with developmental disabilities living in ICFs. More than 50,000 of those people live in ICFs that are privately funded. I grew up next to one, in the first state to close our public institution, in the same county that created the first ever self-direction pilot for people with DD. Over 30 states still have public ICFs, and every state has private ones–to say nothing of the hundreds of thousands of people with all kinds of disabilities living in nursing homes. It has been 28 years since we closed the first ICF. Is it going to take 28 more? How much longer until we’re done?

And big institutions are a relatively straightforward problem to solve, compared to institutions the size of one person. An adult living in a home where they have a bedtime, a behavior plan, and a schedule set by someone else, where their biggest choice every day is red cup vs blue cup? That person is living in an institution. Yet that kind of setting is still the default experienced by hundreds of thousands of adults with developmental disabilities in this country who are theoretically receiving community services. These settings, these institutions with their hundreds of different sizes and faces, persist because disabled people, especially people with DD, are not seen as human. We aren’t seen as human. And so we are met with violence. With restraint. With institutionalization. With control. With violence that, quite frankly, is not even recognized as violence.

Research shows that the vast majority of people with developmental disabilities who arrive in the emergency room for aggressive, destructive, or self-injurious behavior have recently experienced a major change or loss in their life over which they had no control–yet their actions are routinely described as “coming out of nowhere,” and used to justify restraint, overmedication, and even less freedom and choice. Another study shows that 50% of people with “severe behavior problems” had recently experienced the loss of a close contact prior to onset, but when asked, most caregivers didn’t consider grief a potential factor. Yes, that person might have some challenging behaviors! Wouldn’t you? Any human would.

But we are not seen as human.

And that is violence.

It is violence to look at a person and see an object, a problem, a behavior. It is violence to refuse us basic empathy. It is violence to take away our most basic freedoms and call that support. It is violence to call our natural response to that a “behavior.” It is violence to make our community wait until 2014 before agreeing that we might have a right, most of the time, in most circumstances, to lock our doors, and it is violence to make us wait until 2022 for that right to take effect.

We’re all people. We all deserve to be treated that way. And when violence is done to us, we deserve to have that violence named, and we deserve to have that violence stopped. We all deserve to have our humanity recognized.

I can stand on this stage and say that, as a disabled woman who grew up in the shadow of an institution, we have knowledge that demands moral clarity when we look at ICE. And that is true. But that same viewpoint tells me that as a disability community, we need to apply that knowledge and clean up our own house. How much longer is it going to take?

The standards we enforce within the disability community have influence far beyond our own circles. When we don’t really think of or treat people with developmental disabilities as people, the rest of the world takes their cue from us. During the Kavanaugh confirmation, as the disability community spoke out again and again about the Doe v Tarlow case, fact checkers kept pointing out that these women were disabled. It’s not violence to force women to undergo elective surgery, including abortion, against their will, they assured us. They were intellectually disabled. They don’t get a “will.” The world looked at a disability community with hardly any organizations led by self-advocates, and they didn’t see a compelling reason to hold themselves to a higher standard.

Our follow-through matters. Our actions have consequences.

Which is good, because that means we can change this. I say all this not to depress us, but to urge us to take the opportunity that 2019 gives us seriously. We can get our house in order. We can recognize that it starts with us, and we can make 2019 the year that things change.

We can end subminimum wage. We can stand up and protect the settings rule with everything we’ve got. We can pass the Disability Integration Act. We can close every. Last. ICF. We can stop building new ones. We can stop the shocks at the JRC. We can support people with disabilities to make our own choices, control our own homes, and determine our own futures. We can change the stories our society tells about disability. We can change the script.

And even as we work to get our own house in order, we can reach further. We can listen to Liz, and listen to all of the self-advocates who have been saying this for decades, and we can start to support self-advocate leadership in every organization and every corner, not just self-advocacy organizations and token spots. We can stop restricting self-advocates to telling our story over and over again, and we can respect self-advocates as subject matter experts, as policy makers, as leaders. It’s not enough to ask self-advocates to share our stories. Let us change yours. Let us change the world. At the very least, get out of our way.

Are we going to do all of this in 2019? God, no. But we can start. We can commit to getting there. We can take this opportunity, and we can take the tremendous strength and the power we have built over the last two years, and we can move forward with purpose and with urgency.

I know we can, because we’ve done it before.

Recently, I was talking to a researcher who is working on a book about stigma and mental disabilities. As our conversation was winding down, he asked me if I was hopeful about the future. If I thought the trajectory was going the right way. If I thought we’d ever see an end to that stigma, a day without it.

I said yes. And then I said why.

When I was a teenager, learning about self-advocacy for the first time and getting involved in state-level work, I was lucky enough to be mentored and trained and guided by some truly towering giants in the self-advocacy movement back home in New Hampshire. Roberta, and Frankie, and Peter. These were men and women with intellectual disabilities who had lived at the Laconia State School in New Hampshire, our state institution, and who had closed that institution and gotten everybody out and fought to make our state a better place. Our state motto is live free or die, and I have never met people who embodied that spirit more. These were the people who taught me about self-advocacy.

And this is not going to sound optimistic, but what they taught me about self-advocacy was that it is heart-breaking, soul-destroying work. They closed the institution where they had been raped and beaten and neglected and exploited and watched their friends die, and then they spent the next 20 years of their life going to meetings every month where they were not wanted and not respected and not supported, where they were frustrated and humiliated and mistreated in a hundred different ways. They did incredible work, and very rarely was that work recognized. Never, not once, were the incredible sacrifices they were making seen.

And they told me it was all worth it. It was all worth it, see, because one day, 20 years later, I showed up. Not me, Julia, but me, a person with a developmental disability who had gotten to grow up at home and go to my neighborhood school and show up blinking and stimming at a DD Council meeting with a life that was entirely different from theirs. Not a perfect life, not an easy life, not a life free from violence or oppression, but, god. I got to grow up at home.

And now it’s your turn, they told me. This is what the work is. You have a responsibility to do it. There are more kids waiting.

So am I optimistic? Yes. Because Roberta spent decades at Laconia, and I never spent one minute. Because my school violated every disability rights law as a matter of course, and now self-advocates I have helped train are making resources for kids in school right now about their rights. Because I don’t know what the future holds for the next generation of autistic kids, but you can be damn sure we’re going to give them everything we’ve got.

I don’t know what the future holds. We are surrounded by unknowns, by hope, by fear. I don’t know what comes next, and I don’t know what comes after that.

Here’s what I know:

I know that earlier this year, as the ADA was fighting for a lifeline and work requirements were being rolled out for Medicaid, I was at a dinner where an autistic journalist and the first Senate staffer with an intellectual disability haggled over how to place a piece of news coverage.

I know that when I say, I don’t know what the future holds, what I mean is I don’t know what the limits of our imaginations could possibly be.

I know that we are changing what the future looks like. I know it in my bones. And I know this in particular about each of our honorees.

I know that Elena Hung is showing the world how to raise a daughter with a significant disability who is proud of her disability, sure of her place in the world, and somehow, at the age of 4, completely self-directed. I know that Elena models, day after day, how to tell her story while honoring her daughter’s privacy and complexity and humanity, how to fill a gap in the advocacy community while making sure to connect to and follow the lead of disabled activists, how to bring Congress to a standstill and change the world instead of thinking even for a moment to change Xiomara. I know the world is not ready for the change Xiomara herself is going to bring. I know I can’t wait.

I know that DJ is paving the way for the first generation of nonspeaking autistic college students. I know that DJ is creating new ways for nonspeaking people to tell their own stories, and be in charge of their own narratives. I know that DJ is hard at work every day making sure that, as he says, inclusion should never be a lottery. I know that I have worked with DJ on some deeply difficult and, for both of us, deeply personal policy issues this year, and somehow DJ was always closing those interactions with a reminder to me to be more hopeful. I know DJ is making that hope possible.

I know that Liz is showing us what it looks like to have a world where people with intellectual disabilities are policy experts–not tokens, not props, not chess pieces, but experts. I know Liz is showing us what that world will take. I know Liz is showing us that that world is worth it. I know that Liz is showing us what it means to take Nothing About Us, Without Us, and put it into practice. Nothing about us, without us. Nothing.

I know that Viv is building a self-advocacy community in Canada that is unlike anything I have ever seen. I know that Viv is showing that the autistic community is everywhere, all the time, and that we always have things to say. I know that Viv is prioritizing and pioneering new ways of organizing and new ways of building community, ways that embrace and find power in the unique wholeness of each person and reinvent and recombine a dizzying diversity of tactics. I know that every day, Viv is doing things I thought were impossible. I know that I have so much to learn from Viv.

And I know that Elizabeth is inventing new forms of activism, making accommodations out of nothing and dreaming up new ways to bring in people who have been left out of our movement, new ways to make sure we are all heard. I know that Elizabeth embodies a patience I can only aspire to, and also an instinct to look at a void and ask, how can I fill that? I know that we all need her creativity, and her work ethic, and her willingness to answer that question over and over again.

So, no. I don’t know what the future holds. I don’t know what happens next. But I know that we are deciding what the future will look like. And then, once we have made those decisions, I know that we are blessed with the opportunity, right now, to do the work necessary to bring about that future. I know that I can’t imagine anything luckier.

The theme of the gala this year, the theme written on the annual reports you all have at your tables, is this movement is a marathon. This movement is a marathon. This is a water break.

So. If you’ll join me, I have a toast.

To the future!

Thank you. Let’s go.