As tens of millions of people who care about disability issues prepare to vote, and new movements emerge to help get them organized, here are some of their major concerns.
By David Perry
(Image: Pacific Standard)
There are at least 56 million Americans with disabilities and tens of millions more who are family members of or caregivers to them. People with disabilities are America’s biggest minority, but those demographics have never translated into much political power. In 2016, online movements like #CripTheVote have pushed disability closer to the center of our political debate while encouraging people with disabilities to get to the polls. Meanwhile, disability-rights organizations around the country are working to improve accessibility in polling places and to educate voters on the issues — and on their rights.
Disability rights are fundamental human rights, but each of us also has a personal stake. If you’re not disabled now, you likely will be some day, and here’s what you’re going to need to know.
Earned Benefit Programs: Funding Social Security, Medicare, and Medicaid
Many people with disabilities depend on federal and state governments to help them meet basic needs. For many of these voters — more than nine million of them — Social Security Disability Insurance and Supplemental Security Income provide much, if not all their income, while Medicare and Medicaid cover health care and long-term support. But the population is aging, and SSDI programs nearly ran out of money this year. In 2015, SSDI spending exceeded $146 billion, while payroll taxes brought in just over $115 billion.
According to Sharon Lewis, former senior disability policy adviser to the Department of Health and Human Services, the solution isn’t just about revenue; it’s also about flexibility. Right now, in order to qualify for Medicaid, you have to prove, first, that you can’t work enough to make a basic living and, second, that you’re seriously poor. If you need the long-term support of Medicaid, you might be afraid to seek adaptive work and risk your eligibility. Lewis argues that we need “a unified and comprehensive approach to long-term services and supports” that doesn’t require staying in perpetual poverty.
Unemployment and the ‘Poverty Trap’
Disability experts call this conundrum the “poverty trap”: If you rely on government benefits, you have to be poor. In order to stop being poor, you need a job, but if you get a job, you might lose your benefits without making enough money to pay for them yourself. In 2006, researchers from Cornell University advocated dismantling policies that effectively exclude people with disabilities from the workforce; 10 years later, one of the paper’s authors, Andrew Imparato, now executive director of the Association of University Centers on Disabilities, says we haven’t yet solved this trap. Instead of requiring proof that a person can’t work, Imparato says, we should try to figure out what’s keeping that person from working. It might be partly a medical issue, but it’s also likely to be a workplace configured only for people with certain types of bodies or minds. One solution is to shift policy focus from a “medical model” of disability — in which we focus on what people’s bodies or minds can’t do — to a social one, in which we focus on how society erects barriers. Then we attack those barriers.
Meanwhile, people with disabilities need jobs. The unemployment rate for disabled workers in 2015 was 10.7 percent, more than twice the overall unemployment rate.
A version of this story first appeared in the
of Pacific Standard.
Institutionalization vs. Integration
Without financial means, too many people with disabilities waver between institutionalization and homelessness, trapped in shelters, hospitals, prisons, or on the streets. Those institutions play a crucial role in seeing that fewer people starve, but they siphon away resources that could go toward integrated, community-based living options that offer better long-term outcomes.
One tool for integration is the Olmstead decision, a 1999 Supreme Court ruling that strengthened the requirement for public agencies to provide the “most integrated setting appropriate to the needs of qualified individuals with disabilities.” After Olmstead, agencies legally must make “reasonable modifications” to avoid discrimination. “Olmstead helps people with disabilities advocate for their rights to be able to live in the community with the supports they need,” says Tia Nelis, president of Self Advocates Becoming Empowered, a disability-rights organization. Under the law, “states need to come up with a plan to help make this possible,” Nelis says, but those plans are not consistent across the country. In fact, eight states have been forced to sign agreements with the federal government to start complying with the law. This is just the start of a new battle for disability rights.
One-third to one-half of all people killed by law enforcement have disabilities, as I found last year in a report I co-authored for the Ruderman Family Foundation. Deaf people have been killed or beaten for not following verbal commands. Autistic people have died or been injured following confrontations with police, some stemming merely from not making eye contact or responding negatively to physical touch. As for the criminal justice system, 30 to 40 percent of all prisoners are known to have at least one disability. This figure is likely low, because some people are either undiagnosed or don’t disclose their diagnoses. At least 20 percent of all prisoners have some form of mental illness — this figure is conservative — and prisons have become the “new asylums” of our era. Thousands of deaf prisoners are held, often illegally, without access to sign-language interpretation.
Finally, far too many children with disabilities are being harmed in their schools. The latest national data suggests that around 70,000 students with disabilities are restrained every year, some 4,000 of them in handcuffs and shackles, others pressed prone to the ground. Claudia Center, a senior staff attorney at the American Civil Liberties Union’s Disability Rights Program, told me that students with disabilities are more than 20 times more likely to be subjected to physical restraint at school, with children of color especially at risk. In all of these cases, violence falls disproportionately on disabled students of color.
To get involved on any of these issues, disabled people need to vote. There are two major impediments. First, a lot of voting sites aren’t accessible. In a study of the 2012 elections in the United States, researchers from Syracuse University found that nearly one-third of all voters with disabilities had trouble getting to a polling place or accessing the ballot. Everyone should have the right to vote in private. Having a helper pull the lever or push the button for those with physical disabilities, or read the ballot for people who are blind, erodes that right. Moreover, the authors noted that, when voting is more difficult, it depresses turnout. Technology can potentially make voting more and more accessible, but only if states make the proper investments.
Second, people with disabilities haven’t historically identified as a voting bloc with political influence. That’s where movements like #CripTheVote, #RevUp from the American Association of People With Disabilities, and direct action groups such as ADAPT come in. They’re taking advantage of the relatively accessible nature of online communications, especially social media, to help mobilize disabled voters. Going forward, every polling place needs ballots that are equipped with screen-reader technology and accessible via every conceivable interface: touch, eye movement, or even just breathing faster or slower. The technology exists; what’s been missing is the political will to disseminate it to all American voters who need it.