This essay was originally published on Medium.
What ableism comes down to is this — I’m healthier than you are. There’s something inherently wrong with you that is right with me. If there’s a fire. If there’s a flood. If only one of us can make it out alive. It should be me. This isn’t just the thought in the minds of bigoted people. Something to be combated with knowledge and experience. This is the ethos of whole systems. Of incarceration. Of capitalism. It’s something to be combated with rage. With justice.
Today, there are two presidential candidates — and only two — offering a transformational healthcare plan that addresses ableism in America. Those candidates are Senators Bernie Sanders and Elizabeth Warren. That plan is Medicare for All.
Part 1, Detroit — Center for Popular Democracy People’s Convention
From July 25th to the 27th this past summer, the Center for Popular Democracy held its People’s Convention in Detroit, where close to 1800 organizers, elected officials, movement artists, and activists came together for three days of actions, workshops, rallies, protests, and social events. We reflected on how we got to this point in America, and we unveiled our plans for the fights ahead.
I led a talk on Disability Justice, which is distinct from Disability Rights in that it centers the voices of queer disabled people of color, a departure from the largely white and straight disability rights narrative typically taught in schools. Disability Justice paints a more complicated historical picture, and its goals are far more ambitious. As we engage in a national debate on how best to design a healthcare system in this country ahead of the 2020 presidential election, it’s worth reflecting on Disability Justice principles. It’s worth sharing what happened in that room in Detroit.
I ran the talk to give disabled activists a forum to discuss how we could all work together to make protest spaces more accessible, how we could dismantle the entrenched barriers in place that make it difficult for people like us to function as activists. One of the recurring themes that came up again and again was that we all, at one time or another, have felt like a burden at protest actions. Speaking as someone who has been both a protestor and an organizer, I can tell you first-hand that this makes complete sense. Too often in organizing, we design the perfect demonstration, and then right at the end before we launch it, we figure out the best way to fit in as many disabled people as possible. For the most part, though, the structure of the action has already been determined.
Framing protests this way makes people with disabilities a logistical burden to figure out. It turns people into math problems involving time and distance and resources. It’s all a calculus. People with disabilities can sense this. They know when they’ve been tacked on at the end. It’s self-evident.
This situation isn’t reserved for protest actions. It’s true for workplaces. It’s true for movie theaters. It’s true for bars and restaurants and museums. It’s true for capitalism. And it’s true for our healthcare system. We design what we want, and then right at the end we fit in as many disabled people as we can to save face.
What Disability Justice teaches us is that we shouldn’t be approaching people with disabilities as a logistical burden. Providing access and inclusion and care shouldn’t be an obligation. It should be a joy. It should be justice. It doesn’t come after the work. It is the work. It should be one of the first things we think of, not the last. And people with disabilities should be directly involved in the planning.
In Care Work: Dreaming Disability Justice, Leah Lakshmi Piepzna-Samarasinha writes that we must move from “access as a service begrudgingly offered to disabled people by non-disabled people who feel grumpy about it” to “access as a collective joy and offering we can give to each other.”
She goes on:
If I’m having a pain day and a hard time processing language and I need you to use accessible language, with shorter words and easiness about repeating if I don’t follow, and you do, that’s love. And that’s solidarity. If I’m not a wheelchair user and I make sure I work with the non-disabled bottom-liner for the workshop to ensure that the pathways through the chairs are at least three feet wide, that is love and solidarity.
This is the crucial shift at the heart of Disability Justice. If Disability Rights is about access – about ramps and elevators and employment protections and visual aids and translation devices — Disability Justice is about why we’re pursuing those things in the first place. It argues that access is not the goal. It’s the floor. It’s the bare minimum. The goal is dignity and justice. The goal is doing this work not as a burden, but as a joy.
If we were to design a healthcare system that embodied this idea, what would it look like? It would probably involve health insurance that does not discriminate based on disabilities or pre-existing conditions. It would probably involve the freedom to see doctors of your choice without onerous premiums, copays, and deductibles. It would probably involve care that isn’t dependent on employment status or privilege, care that is readily accessible regardless of where you live or how much money you make or how you express your gender. It would probably look like Medicare for All.
And just as we too often look at people with disabilities as a math problem in organizing, so too do critics of Medicare for All. It’s not practical, they say. It can’t be done, they argue. But they’re looking at it wrong. They’re looking at it as logistics, as a burden. We’re looking at it as justice, as joy.
Towards the end of my talk, a woman raised her hand and tied all of this together. She spoke of having a disabled child and of living in a community where ICE raids were common, where people lived in fear of being taken from their homes in the middle of the night, never to return. She spoke of the anxiety and depression that naturally spring from these living conditions. She felt threatened. She felt alone. Several people in the room exchanged resources with her, pointing her in the direction of national and local organizations that could help. To me, though, the most startling part of her story was that it illuminated all of the various interconnected arms of ableism.
You could argue that ableism begets every other ism. It begets racism and colonialism and capitalism. It’s not just about injuries and illnesses, not in America. If you are brown or black or gay or trans, then under America’s gaze, you are disabled, and you should be plundered from and criminalized and put into a box — or in many cases, a cage.
Patty Berne, who co-founded Sins Invalid — a disability justice performance project — said the following:
We cannot comprehend ableism without grasping its interrelations with heteropatriarchy, white supremacy, colonialism, and capitalism. Each system benefits from extracting profits and status from the subjugated “other.” 500+ years of bodies and minds deemed ‘dangerous’ by being non-normative.
That woman who raised her hand wasn’t just othered because she was anxious or depressed, or because her son had a disability. She was also othered because the government is waging a domestic war against everyone who looks like her and because capitalism dictates that she can’t have access to the mental health care she needs. All of these forces are ableist forces. They are all targeting what is non-normative in her, and in all of us.
When we talk about ableism and disability, then, it isn’t some siloed area of advocacy. It’s everywhere. It’s in literally everything we do. It’s in our racial justice work. It’s in our immigration work and our queer rights work. It’s in all of our efforts to oppose the idea that a ‘non-normative’ body or mind is lesser than. So it should never be an afterthought. It should never be the logistical burden we address when there’s five minutes left in a planning meeting. It should be central to every discussion. And again, it should be a collective joy.
Berne writes:
A disability justice framework understands that all bodies are unique and essential, that all bodies have strengths and needs that must be met. We know that we are powerful not despite the complexities of our bodies, but because of them.
Creating a healthcare system built on these values would not only transform our relationships with our medical providers. It would fundamentally alter how government sees and values each of us, regardless of how non-normative we are. It would attack the ableist forces at root of every system and structure in America. In Senators Bernie Sanders and Elizabeth Warren, we have two leaders with the courage to offer us the chance to rewrite the fundamental order of things in this country. It’s time for us to join them in that effort. It’s time for us to pursue Medicare for All.
Part 2, Austin — The International OCD Foundation Conference
One week before Detroit, I attended the International Obsessive Compulsive Disorder Foundation (IOCDF) Conference in Austin. The IOCDF holds the event every summer in a different city, bringing together people living with OCD, family members of people living with OCD, physicians, researchers, artists, and many others to share stories, support one another, and to expand our understanding of this unique disorder.
I’ve attended the Conference for the last three years and spoken at it twice, but every summer I look forward to the Keynote Address more than any other moment. It doesn’t even matter who’s about to speak. It’s the room itself that moves me. It’s the space. Something special happens when you stand in a room like that with thousands of other people who share your disability. It’s something we should keep in mind as we approach healthcare reform in this country. I wrote about it recently for the IOCDF.
I remember the first time it happened, back in San Francisco in 2017. I stood in the back of the crowded hall for the presentation, as over 1,700 attendees trickled in and sat down. Throughout the weekend, everyone had been spread throughout the hotel, attending dozens of different lectures and seminars, without too many opportunities to interact as a group. This was the first time we were all in the same room, and my mind had trouble processing the scene.
I just couldn’t help but see the juxtaposition in my head. I kept cutting back to 15 years earlier, when I was a frightened high school kid, suffering in silence, convinced that I was the only one in the world with this particular set of symptoms. Surely nobody else was spending hours every night conjuring up these horrific irrational scenarios. Surely nobody else was obsessing about this. I’ve learned many times over how wrong I was about all that, objectively wrong. It’s something I’m secure with now intellectually, but emotionally, that sense of alienation never really leaves you. You always feel alone in the crowd, even if you’re the center of attention. You always feel misunderstood, even if you’re next to your closest friend. Standing in that hall, though, that feeling just — disappeared. It was gone, perhaps for the first time. What filled that void was something else entirely, a voice saying something completely foreign to me, something I immediately recognized as true, something everyone with a mental illness should hear: You belong in this world. You are okay as you are. You are not monstrous. I was part of a community, over 1,700 strong, who all understood what it means to see the world the way I do. We had created a space with no shame, and that changes everything.
I want that moment for other people. But not everyone can stand in a room like that. Last fall, the National Council for Behavioral Health issued America’s Mental Health 2018, a comprehensive study of access to mental health care in America. The study concluded that an inability to access care was the root cause of America’s failing mental health care system. “Forty-two percent of the population saw cost and poor insurance coverage as the top barriers for accessing mental health care. One in four (25%) Americans reported having to choose between getting mental health treatment and paying for daily necessities.” Furthermore, “Ninety-six million Americans, or 38%, have had to wait longer than one week for mental health treatments. And nearly half of Americans, or 46%, have had to or know someone who has had to drive more than an hour roundtrip to seek treatment.”
Clearly, Americans cannot access the mental health care services they need, a problem felt more acutely in low-income communities and by people of color. According to SAMHSA, 18.6% of Non-Hispanic Whites received mental health services in 2018, compared to 14.1% of American Indian/Alaska Natives, 10.9% of Native Hawaiin/Pacific Islanders, 8.8% of Hispanics/Latinos, 8.7% of Non-Hispanic African Americans, and 6.3% of Asian-Americans (National Survey on Drug Use and Health). The barriers between minorities and effective mental health treatment are real. They’re cultural, they’re social, they’re economic.
Compounding this is a profound stigma that tells people not to discuss these issues at all, not with anyone. Perhaps the main difference between mental health and physical health is that if you trip on a pipe and break your leg tomorrow, nobody would stigmatize you for going to the doctor for it. Nobody would ask you to shake off the broken leg. Nobody would tell you that you’re not trying hard enough to not have one. Going decades or a lifetime without seeing a doctor for the broken leg would be unthinkable for most. But that’s what we do when we’re mentally ill. We hide it. We mask it. We go years or lifetimes without telling anyone. Not doctors. Not our families. Not our friends. Some of us do seek treatment, but many of us don’t.
Creating a healthcare system in this country that normalizes seeking mental health treatment is the only way to combat this stigma systemically. It’s the only way to change these patterns, to bring more people into the kind of room I stood in. We need legislation that codifies what I heard in that room in Austin, that tells the whole country what that room told me: You belong in this world. You are okay as you are. You are not monstrous. The only system that does that is what Senators Bernie Sanders and Elizabeth Warren are proposing. It’s Medicare for All.
Medicare for All would enable people to seek mental health treatment without the premiums, copays, and deductibles that make care inaccessible to so many. You wouldn’t have to comb cities for providers in your network. You wouldn’t have to pay hundreds of dollars per week for doctors specialized in treating certain disorders. Treatment would be free at the point of care, for everyone. It wouldn’t be reserved for the privileged. Such a system would transform how people approach mental health in low-income communities and in communities of color. It would normalize treating our minds with the same seriousness that we treat our bodies.
Writing on mental health in black communities, Mychal Denzel Smith asks:
Who would we be if we understood mental illness, if we could offer support and had access to all the resources needed to address these common but unspoken struggles? I got lucky: My family cared and supported me, even if they didn’t always understand.
…
It’s not true for everyone, and it’s especially not true for black boys trying to become black men in America. But we can end this deadly lack of care. We can build communities that prioritize mental health and encourage the understanding that depression isn’t a sign of weakness, but an illness like any other. And we can fight to ensure that therapists and psychiatrists versed in racism and gender oppression, proper medication, and facilities that don’t mimic prisons are available to us all. But first we have to start talking about what we need.
He meant that for individuals, for families, for communities. But it’s also time we started talking as a country about what we need. If we want to create a healthcare system that bridges the gap between mental and physical health in this country, that erases the stigma that illness is weakness, that it is choice, Medicare for All is exactly what we need.
Part 3, Las Vegas — Mobilize Recovery Conference on Drug Overdose
One week before Austin, I helped run advocacy trainings at the Mobilize Recovery Conference in Las Vegas, a gathering of members of the addiction and recovery communities for two days of leadership development and strategic planning to combat the overdose crisis.
Ryan Hampton was there, a national figure in recovery advocacy who turned his decade-long opioid addiction into a career of organizing and policy development. Cheryl Juaire was there, a mother of three sons who lost one of her boys to overdose when he was just 23. Cheryl founded Team Sharing — a national network of people who have lost family members to overdose and who now advocate on overdose issues. They were joined by people in recovery, people who use drugs, policy wonks, and activists all working towards creating a world in which people directly affected have ready access to the treatment they need.
What I saw in that room was a group of people working to end the worst public health emergency of our lifetimes. On average, 130 people die every day from an opioid overdose in America. 70,000 people died from drug overdose in 2017, a record. That’s higher than deaths from HIV/AIDS at the peak of the epidemic. It’s higher than deaths from car accidents and guns at their peaks too. What’s going on is a crisis by any definition. It’s an emergency.
So far, Washington has not taken the necessary action to end this crisis, and it’s fair to ask why that is. For years, our leaders have tried to arrest their way out of this epidemic, criminalizing and stigmatizing drug users, launching the War on Drugs, militarizing police, writing harsher drug sentencing penalties, filling prisons with non-violent offenders and then stripping them of their right to vote.
This hasn’t worked. In fact, it’s made things far worse. Criminalization kills. It deters people from seeking care or from reporting overdoses for fear of prosecution. It hurts employment opportunities and takes employment-based health insurance away from people who need it. It sends the formerly incarcerated back into the world without the supports needed to avoid relapse and overdose — people leaving prison are among those at highest risk of overdose. It rips apart entire families and communities.
Today, the only viable legislative approach to overdose is the CARE Act — introduced by Senator Warren and the late Rep. Elijah Cummings — which would invest $100 billion over the next ten years in the evidence-based treatment needed to curb the crisis. Specifically, it would create local planning councils made up of people directly affected by the overdose epidemic, so they could decide themselves where the money should best be spent.
But this legislation is not likely to pass through Congress any time soon. The main opposition argument I hear over and over again when I lobby representatives to pass the CARE Act is that it is too expensive. But the legislation would actually save billions of dollars by offsetting the current costs of managing the consequences of overdose. A recent study by the Society of Actuaries found that the opioid crisis would cost the U.S. somewhere between $172 and $214 billion in 2019 alone, and President’s Trump’s own Council of Economic Advisers found that it cost $500 billion in 2015 alone. Clearly, not acting on this epidemic is more expensive than acting on it.
It’s hard, then, to ignore the other reason people have done nothing to save lives — the widely held notion that these lives might not be worth saving, the pernicious and pervasive idea that drug users are to blame for their problems and that they deserve punishment, not treatment. Again, it’s an ableist idea.
Writing in support of the CARE Act, Ryan Hampton Share
