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 shepherding us through our program tonight. And a special thank-you to Judy Heumann, for taking the time to share her wisdom and her insights and her vision with us tonight.
What a year!
I mean, what else can we say? It’s been a long, bizarre, terrifying year. It’s also been a year where the strength and resilience and ferocity of the disability community has been on full display. I’m drawing strength from that tonight. On Monday, I had a joke in here at this point about how surely any second now my phone would buzz with a Politico alert and tell me that the sky is falling–or, as we’re calling it now, the new normal–and then yesterday Congress decided to take yet another swing at ACA repeal. The take-away here is to never make jokes ever. But even so, as of right now, the Affordable Care Act is still the law of the land. Medicaid still exists. We did that. We were never supposed to be able to do this. This fight was supposed to be over on January 20th and the President was supposed to have a bill to sign on his desk before he was sworn in. But we rallied and we fought in a way we haven’t since the ADA, and we did the impossible, and we won.
And I would like to take this moment to formally announce that we are prepared to keep fighting and to keep winning this fight for as long as we have to.
In fact, even in the face of everything else, I’d like us to take a moment and celebrate the victories we have won. Those are still real, no matter what happens next.
We did this.
You did this.
We will keep doing this.
And I know that even when we get a month of respite, we can still feel in our bones that this isn’t over. Medicaid is where the money is, and they have to pay for tax cuts somehow. They are coming for us now, and they will come for us again.
And we’ll be ready for them.
And we will keep fighting and keep winning this fight because we know that this is just the first in a long line of threats. Every time we win this–or, frankly, every time we drag this out for longer than we ever wanted or thought possible–we make those other fights harder for them. If we can keep winning on health care, they won’t ever be able to get to social security, to IDEA, to everything else. We have to remember that full picture.
So I want to be very clear when I say that there is no silver lining to what we’ve been through this year. Absolutely none. But it is also true to say that this was a year that forced the disability community to really return to our roots and refocus on the core of our movement. Time and again, we saw that return to basics in a hundred different ways–in our tactics, in our messaging, in the values that we put front and center. With the eyes of a nation on us, we have been forced to articulate, over and over again: who are we? What do we stand for? What is our north star?
And we answered.
Life. Liberty. The pursuit of happiness. The right to move through the world like anyone else, making our own decisions and living full and unencumbered lives, not tethered to a lifetime cap or a nursing home bed or a guardian and a behavior plan. Freedom. There was a moment in July, as we were counting votes and sitting in Senate offices speaking our truth to brick walls, when we came within a hair’s breadth of returning to Willowbrook. I know I felt it. I’m sure you all did too. We had a one-vote margin, no room for error and no certainty in how it would shake out, and we were all watching the same inevitable dominos poised to fall. Per capita caps. Medicaid waivers cut into ribbons. Mass reinstitutionalization, or homelessness, or death–all of those doors open to the same room, in the end. It’s happening in Oklahoma now–it was about to happen to the whole country. And we thought we were one vote short.
When these are the stakes, the question really does become about the value of our lives in and of themselves. I’m autistic. I have other disabilities and multiple chronic health conditions. Keeping me alive and included and functioning, let alone thriving, costs a lot of money. Does my life have value? Do I deserve to be alive? Do I get to be a part of this world? I have friends and family members and colleagues who are astronomically more expensive–what about them? Is there a price tag above which we stop mattering? Is there a point where, as a society, we are prepared to tell people sorry sweetie, you just cost too much? Do we want to live in that world?
These are not hypothetical questions. There are real people, some of them in positions of considerable power, who are more than comfortable saying yes. Our job is to say no. No. This world is for everyone. This world is for us too. And you cannot, you absolutely cannot, have this conversation about us, without us. If we’re going to entertain these questions in any capacity, we’re going to make it a real honest-to-god conversation. We’re going to make it concrete. We’re going to bring our toddlers on ventilators, our coworkers with intellectual disabilities, our cavalry riding wheelchairs, and we’re going to make you look at us. We’re going to make you say it to our faces.
And then we’re going to win.
Because, again, a conversation about Medicaid spending isn’t just–cannot be just–a conversation about fiscal responsibility. That may be one dimension, but so too is it a conversation about life, liberty, and the pursuit of happiness. It is a conversation about what our lives get to look like, and how long they get to be, and whether or not they are worthing living in the first place. And they are. They absolutely are.
And when we force the conversation to be on those terms, we can win. Every time.
So let’s talk about how we can do that. How can we win? This year has given us a powerful chance to rethink the tools we use, and look at who is missing, and bring everybody in. And one thing we really learned this year is that, in the past, we were leaving out a lot of people–and we really can’t afford to be. This is something that ASAN took seriously and made a priority this year, and we’ve done a lot to try and make our advocacy and our activism more accessible. We created toolkits that explained Medicaid at a 4th grade reading level, and now we’re doing one on the federal budget, because we don’t want to just tell people to listen to us–we want to equip everyone with the information and the tools they need to decide for themselves. Direct action and calling your elected officials are some of the more powerful tools in an organizer’s toolbox, but not every tactic will be accessible for every person–so we spent a lot of time working on accommodations and modifications that would enable more folks to make themselves heard.
Do you have trouble talking on the phone? Me too, that’s fine–would a social story and a script help? Do you use an AAC device or another way to talk besides speech? No worries, we’ve got you covered. If the thought of talking with another unpredictable human is too much, that’s legit–what if you called after hours? What if you had a planned event where you could take strength from others making the same terrifying calls at the same time? What if we had allies who were comfortable with phones volunteering to make the call on your behalf and read a script you prepared for them? What happens when disability rights organizations take our mandate seriously and really push ourselves to expand our concept of accessibility and inclusion? What happens when we bring everyone in?
And what we learned is that making our advocacy more accessible is really just good organizing. It makes us more effective, and it gets us a much broader base. When you use multiple tactics and give folks multiple different ways to engage and achieve the same end goal, your power increases exponentially. And when you build true partnerships with grassroots activists, and different organizations with different approaches coordinate, you can change the whole game. So as we gear up for this latest round, and everything that lies in store for us in 2018, we have to continue to innovate. What’s next? New tools? New tactics? New alliances?
There’s another piece to this though, that I kept coming back to every time we released a new tool. And it’s that, let’s be honest folks, we’ve spent the whole year backfilling infrastructure that really needed to have existed 10, 20 years ago. Can you imagine how much more quickly this would have been over if our community had been this ready at the start? And we aren’t even close to done yet. As we continue to push through these next few years, we have to be thinking, always, about how we can build a robust, sustainable future for our movement. I’m reminded of some of the powerful conversations some of us had as we celebrated the 25th anniversary of the ADA a couple of years ago. Where do we want our community to be when ADA 50 rolls around? Are we doing the work we need to get there?
And when we say “our community,” or “the disability community,” who, exactly, do we mean?
I want to take a moment to really reckon with this, because it’s important. Self-advocates today are still treated as second-class citizens throughout the disability community. And when I say “self-advocates,” I don’t just mean the autistic community–I also mean people with intellectual disabilities. Let me be blunt: I mean the people who get called the r-word. I mean the people that nobody else wants to be associated with. I mean the capital T capital P Those People.
I mean my community.
Right now, if we’re lucky, a handful of self-advocates are consigned to advisory committee roles in family and provider organizations. We’re rarely allowed on the real board, or hired as staff, or given a role that doesn’t have “self-advocate” somewhere in the title. Many ostensibly self-advocacy organizations are still in effect run by nondisabled “advisors,” rather than being supported to access the tools and trainings anyone needs in order to organize effectively. We are almost non-existent in the Independent Living movement, which continues to assure folks that having a physical disability doesn’t mean your mind isn’t “fine.” The hierarchy of disability is real, and it is unfortunately still in full effect.
This is unacceptable.
My community is a part of the disability community, and we will continue to show up and bang on the door until we’re let in. This is why ASAN was created, and it is why we still exist. Let me be clear: there is not an IQ test that determines when human rights are relevant. My right to be heard is not contingent upon my eye contact or when the last time I banged my head was or anything else. There is no such thing as the voiceless, only the unheard and the silenced. If you can’t hear us at the table, that doesn’t mean we shouldn’t be there, or that we don’t have anything to say, or that we need you to speak for us. We need you to pass the damn mic. The disability community has to be for all disabled people, and all means all. Period. End of sentence.
And before you ask, yes, this is all true even for That Person. Yes, even the person who you think is completely unaware of everything going on around them, even the person without any kind of communication system in place, even the most disabled person you can imagine. Yes. Them too. To be clear, self-advocacy is not about wearing business casual clothes and doing policy work–that kind of thing is barely even a fraction of the sum total of what self-advocacy can mean. Not everyone will want to do this kind of advocacy, just like most humans have made the wise decision to stay out of politics. But anyone who wants to should be able to.
I have spent a lot of time, with a lot of the people in this room, walking up and down the halls of Congressional offices this year. One of the people who’s been with me almost every time is my colleague Liz. Liz wanted to make sure every office heard first-hand from her how important Medicaid is to our community, and in a lot of those meetings, Liz was our ringer. But Liz wants to bring more voices in with her, and she’s on a quest to bring policy knowledge to self-advocates with intellectual disabilities and to transform the policy process into something that is truly inclusive of everyone impacted by it. She’s spoken powerfully about why. “I don’t want to have to wait for someone to explain it to me,” she said the other day. “I want to learn it for myself.”
Right now, self-advocates like Liz are barred from so much policy work and much of the disability community’s activism by jargon, by inaccessible materials, by inaccessible meetings, and by low expectations. When we are allowed to speak, we are often only allowed to tell our own personal stories. But we have so much more to say.
Self-advocates have powerful perspectives, decades of unique lived experience, and voices of our own. We deserve the first and the final say in things that impact our lives. If we want to know, we deserve to understand. We deserve access to the same tools and information as everyone else. We deserve to be at every table.
It’s not easy! I’ll be the first to admit that ASAN is far from perfect in this regard. We have a lot of work to do and a long road ahead of us. But we are committed to doing that work. And we know that when we do, when we really do bring everyone in, when we build a bigger table, everyone benefits.
If this year has shown us anything, it is that the disability community is changing the world. So let’s really change it.
So this is our challenge, for the next year. Hold on to what we have. Push even farther. Don’t lose sight of our North star–our freedom, our lives, our voices finally heard. And make sure we’re bringing everyone with us.
It’s a tall order. But we have done the impossible, and emerged stronger than ever. And we’ll keep doing that for as long as it takes. Because it’s right. Because it’s what our community needs. Because it’s what our community deserves. Because we know in our bones that fundamental truth: there can be nothing about us, without us.
We’ve proven our power. Let’s make sure that means something.