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August 6 - September 15, 2022
We struggle with the assumption that institutions know more than we do, because that is what we’re taught.
People with disabilities also have to work to overcome the feeling that asking for an equal opportunity is asking for too much.
Part of the problem is that we tend to think that equality is about treating everyone the same, when it’s not. It’s about fairness. It’s about equity of access. And equity of access, whether to housing, health, education, or employment, looks different for someone like me and the hundreds of thousands of us who cannot do things the same way, than it does for the majority of people who can.
It involves ramps, wider doorways, bars, sign language interpreters, captioning, accessible technology, audio descriptions, documents in Braille, and personal assistance for those with physical disabil...
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This helped people get clearer about who they were and what they wanted, so they would have the confidence to speak up for themselves. If you’re going to look a naysayer in the face and tell them they’re wrong, or stand up and demand your civil or human rights, you’d better be clear about who you are and what you want.
I refuse to give in to the pressure of the silence. This is one of the things about me. I persist. I insist on speaking. On being heard.
We were all unique for the times: We were disabled and we’d gone to college. We’d challenged the system that said how we had to be taken care of and had turned it on its head. We weren’t ashamed of who we were and what we needed and we were no longer willing to let charity organizations, focused on finding a “cure,” speak for us. Each working in our own respective countries, together we pushed to change the conversation to one of equality and rights instead of cures.
SECTION 504 HAD REDEFINED DISABILITY. Instead of looking at disability as a medical issue, it had made disability a question of civil—and human—rights.
People have asked me, “Were you angry?” Was I angry about all the barriers, all the violations, all the mistreatment I’ve lived through? Is that what fueled my activism? I feel sometimes that that question is tinged with an unspoken judgment. As women, we are taught that anger is somehow wrong.
He presumed things would open up, that he would be welcomed. He presumed privilege. For me, it was something I had to work on. I never felt like I could presume acceptance of my ideas, of myself. I found myself being deferential to men, even when I didn’t mean to be.
as a man, Ed could get things wrong, repeat himself, and make promises he couldn’t keep. And Ed would still be in charge. As women, we could say all the right things, do a thousand things correctly, and follow through on all our commitments. We could lead a hundred and fifty people to take over the Federal Building in San Francisco and change the laws for disabled people. But we were not in charge. People called me pushy. People never called Ed pushy. This affected me.
As disabled women, we didn’t have help from the women’s movement. We were always pushing to have our issues considered and supported by the women’s movement, but we were largely ignored. We were basically on our own.
is this anger wrong? Is it unladylike and selfish, as we were taught to believe when I was young? I believe not. Our anger was a fury sparked by profound injustices. Wrongs that deserved ire. And with that rage we ripped a hole in the status quo.
Activists with ADAPT, an organization that started in 1983 to protest inaccessible transportation, were stopping buses, propelling themselves out of their wheelchairs, and dragging themselves up the steps of buses.
The work of a democratic government is supposed to be long and slow and hard. It must be that way. Because the whole point of a democratic government is to create laws and processes that allow some specific people to govern everyone else according to a previously-agreed-upon set of contracts, so that we can live peaceably together in large groups, meaningfully pursuing our lives—instead of living like Vikings, marauding and pillaging, with the strongest tribe in charge. In order to work, a democracy needs checks and balances, thoughtful deliberations, analysis, negotiation, and compromise.
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Government was doing its part. And we were doing our part as activists—staying on top of government, tracking, keeping people accountable and honest. As long as we felt like everyone was working in good faith, listening, and inviting the voice of the people into the conversation, we felt the process was working as it should. It was working for us the way it worked for everyone else.
As President Bush began to speak, a hush fell on the enormous crowd. “Let the shameful wall of exclusion finally come tumbling down,” he said. And he sat down at a desk and signed the Americans with Disabilities Act into law.
After nearly twenty years of protesting—from one coast to the other, under five presidents, Republican and Democratic—we had created what I believe to be the strongest, most comprehensive civil rights legislation for disability in the world.
Change never happens at the pace we think it should. It happens over years of people joining together, strategizing, sharing, and pulling all the levers they possibly can. Gradually, excruciatingly slowly, things start to happen, and then suddenly, seemingly out of the blue, something will tip.
The poverty and conditions were very different from ours in the US, but the issues were so similar. Fear. Judgment. Questioning of our worth as human beings.
Who gets to decide who is worthy of life?
The conditions were quite different from ours, but they cared about the same things. Autonomy and dignity and gaining access to fair laws.
Being in a segregated environment for so long had been good and bad for me—good because it gave me space to grow my confidence, but bad because I didn’t learn how to be a part of the nondisability community in a forthright way. Bullies often choose people they perceive as the most isolated and marginalized—and the stereotype of disabled people fits that description, which makes us a target.
the convention served as a major catalyst in the global movement for changing how disabled people are seen—that is, no longer as objects of charity, medical treatment, and social protection but rather as full and equal members of society, with human rights.
Lack of exposure and lack of knowledge. These were the two biggest problems we faced with people. Not that unusual.
Have you ever noticed how some words are just words—until you really see or hear how something feels? Like hatred. Or discrimination. Or human rights. We underappreciate our human rights in America. But human rights are like salamanders: you don’t notice they’re disappearing until suddenly you realize they’ve gone.
Disability is seen as a burden, a tragedy. But what if it wasn’t?
In my own mind, there were no barriers to what I could learn or what I could achieve. All the barriers came from outside of me.
My life would have been totally different. And the same. How can anyone know what their life would have been? I can only know that it was meant to be what it is. I am who I was meant to be.
Disabled people are twice as likely to be unemployed as nondisabled people. There’s no dependable financial source for the personal assistance we need to be able to live independently. We’re still stigmatized and regularly encounter discrimination and people assuming we’re less qualified or are going to be burdensome in some way.
Do we want our communities to be the types of neighborhoods and cities where our loved ones can choose to stay in their communities as they age? Where, if an accident happened to us or one of our children, we would be able to continue living in our community, going to our same school or working our same job?
We need to accept our humanity and design our world around it: use universal design; support personal assistance; change how we hire. We can design our cities and our society in a way that fosters belonging and community, rather than segregation and isolation.
Shirley Chisholm, the first black congresswoman and the author of Unbossed and Unbought, said: “You don’t make progress by standing on the sidelines, whimpering and complaining. You make progress by implementing ideas.”
Distance and segregation are breeding grounds for failures of understanding and empathy and ultimately injustice and the denial of others’ rights. If we allow ourselves slowly to become a country where we are simply unable to imagine ourselves in another’s shoes, we can’t understand the complexity of how discrimination occurs and how it feels. Lacking respect for those we don’t know or understand makes it easy to blame inequality and poverty on individuals—rather than on the system. Once we’re caught up in blaming each other, how can we possibly create a society that values equality?
Barbara Jordan said, “A government is invigorated when each of us is willing to participate in shaping the future of this nation.”
For we are our leaders of inclusiveness and community, of love, equity, and justice.
