Earlier this month, I gave the following remarks at the 2016 Autistic Self Advocacy Network Gala. They reflect some thinking I’ve been doing of late about the need for the disability rights movement to evolve and change as we prepare to face the challenges the next four years have to offer.
I’m posting them here so people can leave their thoughts on how “Hidden Army” organizing has strengthened or weakened their disability rights advocacy over the course of their work – and how to facilitate what comes next. For those of you who are interested in seeing the original speech, captioned video is available here.
Thank you all for coming out tonight. Thank you, and welcome. That’s the keyword, isn’t it? Because what we try to do at the ASAN gala is to send a message of welcome to all of us. You’re all a part of that. Whether you rock or flap, make noises or vocalizations, don’t make eye contact – I dare say most people here, quite a few of us at least, don’t make eye contact – we want you to know that you are welcome here. You are a part of our community.
I want to start, as is appropriate to do at an Annual Gala, by thanking our generous donors and supporters who have joined us here tonight. Your support makes what we do possible – and I’m pleased to report that this year, on our 10th anniversary, we have had our most successful gala yet, raising over $80,000 to support ASAN’s operations in 2017. I’d like to thank the Special Hope Foundation, Anthem, Centene and all of our other sponsors for their continued investment in ASAN’s work.
Ten years is a long time in the life of an organization. When Scott Robertson and I founded ASAN in 2006, we began with nothing but a simple assertion that all was not right in the world – and that we Autistic people needed to have our voices heard in order to fix it. All is still not right with the world, but the last decade has seen considerable progress.
Tonight, as I look out on two hundred of our strongest supporters, I have to marvel at how we’ve grown from a group of awkward pimply teenagers to one of the premier national disability rights organizations in Washington. It just goes to show what can be accomplished when you lack the good common sense to know that what’s impossible.
And yet, despite this landmark milestone and celebration, I have to tell you: I’ve had a rough week.
Maybe some of you have too.
For the last ten years, we’ve worked closely with our friends in government to advance the full inclusion of people with disabilities throughout society. For the last ten years, we’ve made considerable progress, clearing away the detritus of the past in order to form a more inclusive and welcoming future for all people.
As we begin the next decade of ASAN’s existence, I fear that – for a time – our work will have to change. At least for the next few years to come, we may find ourselves on defense, defending what we’ve achieved, more often than we’ll be breaking new ground. That’s a frightening thought.
I’m reminded of an old story – some of you know it, it happens to be one of my favorites – about Pat Wright and Senator Ted Kennedy, two of the 20th century’s great warriors for disability rights, sitting together at the signing ceremony for the Americans with Disabilities Act in 1990.
After years of advocacy, pushing and prodding and grueling activism, the world’s first comprehensive disability civil rights law was about to be signed. As President Bush prepared to put pen to paper, Senator Kennedy leaned over and whispers to Pat, “Uhhh, Pat. What if he reads it first?”
And of course, she responded with, “Don’t worry, he won’t.”
And there’s an extent to which, as humorous as this story is, it reflects a critical weakness in our disability rights laws. The general public doesn’t really know what’s in them. Often times, even the elected officials that vote for them and sign them don’t really know what’s in them.
There’s a small community of disability rights experts and leaders, who truly know disability policy, and a slightly larger group of elected officials, staff and persons of influence who have some connection to the disability community and are thus ready to follow the lead of those who know it well.
It’s called the “Hidden Army” approach, and I know some of you in this room pioneered it beautifully. It brought us the ADA, the IDEA and countless other disability rights victories. We didn’t have to go to the public, not really. We didn’t have to put our issues in the arena of political debate. Everything could remain safely bipartisan, largely behind closed doors. Our legislative champions would follow our lead because “they were doing good for disabled people”. They didn’t really need to know the details.
There are a lot of strengths to that tactic. It meant we could move forward policy despite the fact that we can’t mobilize the tens or hundreds of thousands of supporters other movements can bring out to a march or a protest.
It meant we were not held back by what otherwise might be crushing institutional weaknesses, like the lack of a meaningful disability media or a disability-focused electoral politics operation. It meant we could keep tinkering with the details of disability policy in quiet conversations rather than grand marches, largely secure in the knowledge that when our champions acted, their personal connection to the cause would spur them to do so with our advice in mind.
There is a problem, however, with this time tested strategy. Because of our reliance on “Hidden Army” tactics, the general public has never seen disability rights as a struggle, never seen our victories as hard-won, or our losses as reflecting anything other than ignorance, rather than malice.
We have never really had to go to the public on the issues that matter most to us. Disability is apolitical in the public mind, and so when the day comes when those in power do not have our best interests at heart, it becomes harder to resist the roll back of all we’ve accomplished.
I would submit that the next four years challenge us to make a change in the kind of advocacy we engage in. First, there is still definitely a role for the “hidden army” approach. We must call on our friends and would-be champions in Congress to stand up for the programs that sustain our people.
Let me say this simply and clearly: legislators who wish to slash hundreds of billions of dollars from the services we depend on will win no points with us by a symbolic awareness resolution or a momentary bump in research funding. There is no universe where you can both vote for block granting Medicaid and call yourself a friend to the disability rights community. You have to choose.
But we also have to move to new ways of organizing. We have to talk to the public in a way we haven’t before, in a way we’ve been reluctant to. Because, you know, it’s scary to try and build a mass movement.
We’ve never been great at that! I’m tremendously proud of the strength and influence that ASAN has built over the last decade – but I also know – as do we all – that every disability rights organization continues to struggle to get our message out to the public.
It’s scary to speak to the American people – and realize they may just not care what we have to say. That perhaps for all the progress and all the advocacy, we have yet to break the barriers in the hearts and minds of our fellow citizens.
It’s scary to admit that maybe we’ve been lying to ourselves about the present power of our grassroots, the strength of our movement at this moment and time. That for decades now, we have been pleading and cajoling those more powerful than we are to support our moral case rather than standing on the strength of our own political operation.
In Washington, the last thing you ever want to do is to admit you’re not as powerful as you pretend to be.
But there is also a unique strength in that acknowledgement. The moment we stop lying to ourselves is the moment we can set out to actually build the power our community has the potential to wield.
The majority of disabled people and families have yet to be activated politically. The challenges of the next four years will be a tremendous and vital organizing opportunity.
We have a chance now, in this difficult time, to become stronger than we are today. Through real investments in grassroots organizing, through alliances with other communities at risk, through a willingness to court controversy and to challenge those who call themselves champions to stand with us when it counts, we can build a stronger disability rights movement.
It will be tough. It means a lot of hard work – and a lot fewer invitations to the White House.
But it also means a stronger disability movement, that doesn’t depend on the right official having a personal connection. That enjoys a broad based community of activists, familiar with the details of the programs that sustain our lives and our rights. It means having the chance to grow as a movement – and be stronger when we defend what is ours and make further demands for a more inclusive world.
Starting in January, Julia Bascom will be taking over in my role. I know ASAN will be in excellent hands for our next decade under her leadership. As a result, this is my last speech as ASAN’s President. While it is only the beginning of what I hope will be a long lifetime of service to the disability rights movement, these are my last public remarks to the organization I helped to found ten years ago and to which I have had the honor of dedicating the entirety of my adult life to date. So since you pretty much have to listen to me talk, I hope you’ll forgive me if I draw on my religious tradition to talk about the moment we find ourselves in.
There is a Jewish folk tale, with roots in the Talmud, about the Lamed Vavniks, the thirty-six righteous people on whose lives the fate of the world rests. The world continues thanks to the righteousness of this small group, and should any of them die without a successor, the world would end.
They will never announce their role and may not themselves be aware of their importance. The legend tells us that anyone who claims to be a lamed vavnik is most definitively not, since they are by nature humble and not prone to self-aggrandizement. But for the sake of these thirty-six, no matter how much humanity falls short of our ideals, God will preserve life on earth.
I dare say that none of us in this room can lay claim to the honor of being one of the thirty-six most righteous people on the planet. I can think of at least a half dozen reasons off the top of my head why I’m out of the running. I don’t know about you! We are all flawed and imperfect people, struggling to do the best we can under difficult circumstances.
But for the sake of the world, we have to live our lives as if we are shouldering that awesome responsibility. That if we should falter and fail, should we fall without making provisions for succession, the world itself will come collapsing down around us.
And in truth, while life on earth will probably go on if we fail in our obligations, the life of the disability rights movement – and all the millions of lives that depend on its success or failure – may not survive without us.
And in turn, should we succeed in living up to that solemn promise and responsibility, we may yet succeed in the great mission of disability rights advocacy, to empower the next generation to live lives without fear, without want and with the sure and everlasting knowledge that they are welcome and belong in this world. Our role is to build a strong foundation, so that the next generation may take for granted the simple and obvious fact of their humanity.
It is our obligation to keep aloft the flame left to us by Justin Dart, by Ed Roberts, by Eunice Kennedy Shriver, by Judy Heumann, Jim Sinclair, Burton Blatt and many others who paved a trail to the progress we enjoy today. We must preserve their legacy – and work to advance it, especially in times of darkness and difficulty.
Today, and over the next several years, we will not fail in that charge. In the words of the late Senator Kennedy, who stood on the White House lawn more aware of the ADA’s promise than even the President who would sign it, “the work goes on, the cause endures, the hope still lives and the dream shall never die.”
Thank you. Have a lovely evening and God Bless America.