People are asking why disabled people are suddenly protesting. It’s not new. The disability rights movement grew out of other movements of people labelled “unable” so it’s hard to date its beginning, but it was well underway at least by the Congress of Milan nearly 140 years ago, when hearing people decided that to be equal you needed to speak and to understand speech and set about stamping out Deaf language and culture. Although a great many Deaf people reject the label “disabled” that many other groups accept and even take pride in, their critique of “ability” is echoed by every other strand of the movement.
But I’ll tell you why disabled people are protesting right now. It’s because Medicaid is an investment in freedom.
Filmmaker and activist Dominick Evans said this morning, “I am terrified of the health care bill…. I don’t want to die. I don’t want to end up in a nursing home.” And he’s right. That’s exactly what he’s facing if it goes through.
Ironically, the season when we celebrate freedom is upon us. Two weeks ago we celebrated the notification to the last officially sanctioned slaves in the Union that slavery had been abolished. In three weeks we will celebrate President Bush’s affirmation that disabled Americans have a rightful place in society. There is red, white and blue everywhere; there are picnics and parades and rainbow flags and everywhere we are saying: freedom! freedom! freedom! And yet our Republican national “leaders” are in the middle of a devastating attack on freedom and opportunity. If they succeed, Americans will lose their health and their savings and their lives; parents will lose their children and children their futures; young people will lose their educations and their mentors; adults will lose their jobs and their homes and their peace of mind; that cherished dream of life, liberty and the pursuit of happiness will be snatched away from millions. Democratically elected legislators demanded that their constituents be represented, and Mitch McConnell and his gang said no.
Americans demanded a voice, clogged the switchboards and filled the voicemails insisting on being heard, wrote letters, signed petitions, marched, prayed, told their stories, and were sneered at by Kellyanne Conway and her crowd. The Republicans campaigned on the need for more jobs; now they say there are so many jobs with great pay and awesome benefits that everyone can have one. They campaigned on cutting insurance premiums; now they are telling us their plan is to raise premiums on those who can least afford it and cut benefits for everyone. And they are going after Medicaid, one of the greatest investments in freedom and opportunity this country has ever known.
In America today, some babies are born to parents who can afford to pay for their routine medical care so they can grow up healthy — and there is Medicaid to give other babies a chance. Some children grow up in families that can care for them — and foster kids get Medicaid. Some kids go to schools where the school boards can afford to meet their education-related needs — and some get help from Medicaid. Some people have access to bathrooms and bedrooms and kitchens they can use without help — and some use Medicaid so they can hold down jobs, pay taxes, raise families and live good lives. Some people can afford preventive health care so they don’t land in the emergency department with outrageously expensive emergency needs (that we all end up paying for) — and some use Medicaid. Some people have good insurance or huge bank accounts when cancer or stroke or a car crash hits their family — and some turn to Medicaid. People in America work hard. They deserve freedom and opportunity — all of them, not just a lucky few. Some combine their hard work with luck, and some combine it with Medicaid.
So when the Republican leadership introduce the AHCA and the BCRA, they are trying to cut investments in freedom and opportunity. For many Americans, it’s a numbers game. The destruction of a life, a family, imprisonment in an institution, the death of a child, it could happen to anyone. It’s not very likely if you were born to privilege, but remember that President Roosevelt was born wealthy. It’s a good deal more likely to happen if you’re an average college-educated working person with a full-time salaried position, more likely yet if you work two or three low-wage jobs. But for disabled people this is more personal than it is for many others, because so many of us can name friends and loved ones who are likely to lose their jobs, their homes, their kids, their freedom and their lives.
That’s why there were protestors dragged out of Senator Mitch McConnell’s DC office, why an ambulance took a leader away from Senator Todd Young’s Indianapolis office, why a woman at Senator Cory Gardner’s Denver office did not resist as police experimented with her ventilator tubes, why people showed up at Senator Ted Cruz’s Houston office furious that he refused to even listen to them. Because in this time to celebrate freedom, freedom is under attack, and Americans with and without disabilities are fighting back and calling on elected officials to do the same. We asked nicely. Asking didn’t work. We explained. Explaining didn’t work. Freedom is important: it’s time to insist.
This is a struggle for freedom. Nothing less. Disabled people — like everyone else — have a right to life, liberty and the pursuit of happiness. We are a movement with many strands, but we are all saying some of the same things:
- We all have things we can and cannot do — like everyone else — but we are all able to be valuable members of society. First and foremost we are people — like everyone else – and any inabilities we may have do not detract from our humanity – just like everyone else. Many of us reject the idea that they are any more unable than anyone else “Deaf people can do anything hearing people can do, except hear,” I. King Jordan said; Jacobus TenBroek reported, “Every time I think I have hit on some job that a blind man couldn’t conceivably hold, I find a blind man holding it.” Others accept that there is a range of ability and place themselves toward the end of the spectrum. Personally, I look at 41-time Paralympics gold medallist swimmer Trischa Zorn, 23-time Olympics gold medallist swimmer Michael Phelps, and my neighbour Fred who likes to hang out down by the lake in his swim trunks. I have a hard time seeing Zorn as the least able of the three just because she is blind.
We have the right to life:
- We have the right to survive. In a society with the knowledge and resources to provide health care to everyone, we have a right to life-preserving and independence-enabling health care. “The lives of disabled people are already devalued,” says Anita Cameron, but they can be good lives and we deserve a chance to live them. Amy Schnelle, a former factory worker, died because she couldn’t afford the meds that stopped her seizures. Mother Esmin Green died in a hospital waiting room from blood clots more than 24 hours after she was admitted, waiting Medicaid provides that access to health care that is required for life to many people; Medicaid is freedom to live.
- We have the right to define ourselves, to have and express our own ideas and values. This is in the First Amendment to the Constitution. We have a right not to be forced to behave as if we were nondisabled, as Deaf people have been pressured to function as if they were hearing and autistic people have been pressure to behave as if they had typical neurologies. We have a right neither to be herded together in segregation nor to be dispersed into isolation within the larger community. We have a right to self-determination, to choose the course of our own lives, where we will live, how we will spend our time, and in whose company, to the same extent as others. Medicaid allows many disabled and chronically ill and severely ill people the chance to move beyond worrying about merely waking up the next morning and to worry about what kind of people to be; Medicaid is freedom of thought.
We have the right to liberty:
- We have a right to freedom from institutions. We have the right to avoid being outright coerced by courts and laws, as some people with psychiatric labels are, and we have the right to avoid being trapped because services we need are only available to us in institutions. People with intellectual and developmental disabilities have been forced into places like Willowbrook and Pennhurst and into group homes, people with psych labels have been forced into state hospitals, and people with physical disabilities and chronic illnesses have been forced into nursing homes. “Are you in charge or is the staff in charge?” asked Roland Johnson, a Pennhurst survivor, calling for services that enable people to choose how they want to live — just like everyone else. Retiree and homeowner Chris Meadows is facing institutionalization for exactly this reason. Medicaid waivers help many people at risk of institutionalization stay out, or at least stay in more geographically integrated, smaller, more “home-like” facilities — but the waiting lists are enormous; Medicaid is freedom from unjust imprisonment.
- We have the right to access society, to things like being in spaces we can enter and having information in accessible formats and having housing and education and employment. These things allow us to be fully functioning members of society. They enable us to go to the supermarket and the movies. President Bush signed legislation that provided an enormous step forward. But to do use it we often need specialized equipment like wheelchairs and communication devices. Harvard students are trying to get James Lappin, a man in their community, an electric wheelchair he needs, but many people don’t know anyone with the resources to help. Medicaid helps with that; Medicaid is freedom of opportunity.
We have the right to the pursuit of happiness:
- We have the right to supports. Americans believe in rugged individualism, but it’s a myth. To get dressed this morning I depended on other people to grow and harvest cotton, process it into thread, and dye and weave it. I depended on others to design and manufacture garments and to build ships and roads and trucks and an internet so I could get the clothes. I depended on an enormous number of people to help me get dressed, and so did everyone else — but we treat all this as invisible. If a person needs one more bit of help slipping a shirt over their head, that is considered dependence. It is no more dependence than anyone else — but for many people, that one need is enough to result in a loss of freedom; for communities, it can result in the loss of a valued member. Medicaid pays for assistance in dressing and eating; Medicaid is supports for freedom.
- Education is one of the most fundamental supports that every American child is owed, and Medicaid pays for many things disabled children need in order to benefit from the public education they are guaranteed, so they can live and work and participate as adults. The prospects for kids with Down Syndrome were lousy 35 years ago: lifelong institutionalization and early death were the norm. Today, simply because kids with Down Syndrome grow up in families, communities and schools, adults with Down Syndrome graduate from high school, get jobs and pay taxes. Some go to college. Charlotte Fien addressed the United Nations about human rights earlier this year. “I have a good life,” she said, describing a pretty typical young adult’s existence. Without Medicaid, these costs would be the problem of individual school districts, many of which are already struggling to meet the needs of the children in their care today; Medicaid is freedom for today and tomorrow.
- We have the right to inclusion, to be considered part of society, to have out needs taken into account — just like everyone else. Most disabled Americans can and want to work, but we face discrimination in jobs. Many of us do have jobs, and many others contribute to their families and communities without getting paid, or get sub-minimum paycheques for pennies an hour. “Get a job!” they tell us. Many of us have jobs, and many more are trying to get them, but we face employers wo mistakenly think of us as unable, just as many hardworking nondisabled people struggle to find work. Moreover, children too young to work, people who want to work and cannot find jobs, those who have worked their whole lives and have had to retire, and those who cannot work at all should not be excluded from the community. Medicaid is a safety net for desperate people, disabled and nondisabled, who cannot get paycheques for some reason. Medicaid is freedom to belong.
These are the disability rights various groups disabled Americans and our families and allies have struggled for, fighting against oppression in the name of “ability.” We have not come close to winning, but we have made real progress over the years. (After her arrest, Denver protester Carrie Ann Lucas was transported by police on a lift-equipped bus, something that her group, Atlantis ADAPT, fought for and won decades ago.) We are determined; and we are not prepared to allow Ryan and McConnell to roll back the clock and hurl us even further from the ideals Americans will celebrate this week.
If America is serious about the rights to life, liberty and the pursuit of happiness being at the very core of our humanity – as we will be hearing over the next few days – then that means disabled people and working people, too. If America isn’t serious — well, it should be.
And one of the fundamental ways that life, liberty and the pursuit of happiness are being provided to disabled and working Americans right now is Medicaid.
It doesn’t have to be that way. We could invest in freedom and opportunity some other way. Or we could make most of the costs of enabling disabled people invisible, as the costs of enabling people who were born to privilege are invisible, by addressing the problems in society that ensure that some of us have the tools to succeed and many others don’t. There are certainly other ways of doing things that we are open to looking at. But we will not abandon our demand for freedom. And because right now, today, we live in a society that is set up to meet the needs of some people and not others, we need a system to invest in the freedom of those people whose needs are not met. For disabled people and the working poor and anyone who may become disabled, which is every single person, today the system that invests in freedom and opportunity is Medicaid. That’s why disabled activists are in the news.
I’m not a Medicaid user now. I don’t need it right now. But if and when the day comes that I do, it should be there. It should be there for those who do need it. I have been denied needed medical care. I have been brutalized in efforts to force me to act as if I were nondisabled. I have been institutionalized. I have been denied access to basic things. I have gone without needed supports. And I have been denied a meaningful place in society. It should not have happened to me. It should not happen to others. And the Republican leadership should not be preparing for another assault on freedom and opportunity when they return to Washington after the recess – but they are.
Happy Independence Day and thank you to everyone who has spoken up for disability rights and other civil and human rights since the introduction of the House and Senate anti-freedom bills.
YOU CAN MAKE A DIFFERENCE. HERE’S HOW:
- Sign up for and act on action alerts from Access Living or another group.
- Call your Senators to let them know you stand for no cuts, no caps on Medicaid and you expect them to support investing in freedom, too.
- If you have Republican Senators, call your Governor to demand that they support investing in freedom.
- Educate the people around you who don’t understand why it’s so important to keep Medicaid intact.
- Donate to or join ADAPT.