July is Disability Pride Month

For months now, we’ve become accustomed to hearing about old folks, African Americans, immigrant workers in meat packing plants, prisoners and other marginalized people dying from the COVID virus. More recently, however, younger people in Florida, Texas and other states are among those hospitalized with severe COVID symptoms.

As this demographic shift has emerged, I’ve started tracking how newscasters, pundits and public figures respond. One common conversation goes something like this:

Lay (non-medical) person: “These young people who died, they had pre-existing conditions, didn’t they?”

Medical Expert: “Well, we can’t give out confidential patient information and we don’t yet have a great deal of data but it seems like obesity, diabetes, hypertension, especially obesity are risk factors.”

Lay (non-medical) person: “Oh, then that’s okay. It’s their own fault. I can hold onto my belief that normal people like me will be fine.”

Note: The first two quotes are amalgamations of comments that I’ve actually seen and heard. The last quote is my own attempt to read into the facial expressions of television commentators and news show hosts.

Needs and Rights

Since the time of the Puritans, Americans have identified good health and hard work with moral worth. Today fit, slim and fully abled bodies are still valorized as signs of “taking care of oneself” (a long-standing American value) and doing the “right thing.” 

In some cultures people who live with pain, illness or disability earn respect for developing enhanced spiritual gifts, heightened interpersonal sensitivities or other valued skills. In American culture, however, people living with disabilities are marginalized or at best described as having “special” needs. We may do a great deal to meet those needs once an individual is officially certified as disabled and eligible for Social Security Disability or other services. But the bottom line is that needs make one “needy”; that is, lacking in attributes such as autonomy and self-control that we as a society admire.

These attitudes are translated into policies and practices. People with disabilities are subjected to discrimination in securing employment. Approximately 40% of working age adults with severe disabilities live in poverty, and having a child with chronic illnesses or disabilities is associated with greater poverty for parents. People with disabilities also are singled out for correction and punishment. Young adults with disabilities enter the juvenile correctional system at rates four to five times those of non-disabled youth, and disabled people are more likely than non-disabled people to be stopped, arrested, and murdered by police.

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While needs make one “needy”, rights afford pride, autonomy, dignity and recognition as a full human being. The United States, however, still has not ratified the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Opponents to ratification claim that the United States does not need foreign interference in our policies and that we are doing just fine regarding people with disabilities. Yet President Trump’s public mocking of a disabled reporter did not prevent his election as president. Ironically – or not – in 2016 Trump won eight of the ten states with the highest percentages of citizens with a documented disability.

Disabled Nation

Some politicians are downplaying the severity of the pandemic by pointing out that not many younger people die. However, it is becoming increasingly clear that many of those who become sick — young and old alike — develop debilitating and long-terms neurological and other symptoms. While the word “disability” has not yet become part of the popular COVID vocabulary, the reality is that the virus rapidly is creating large numbers of newly disabled people.

In light of our cultural history, it’s likely that these sufferers will be disparaged for being too weak to fight off the virus (the conservative view), criticized for their imagined failures to have sufficiently followed public health protocols (the liberal view), and shamed for that greatest of all sins – obesity.

They also will have to figure out how to navigate the American disability landscape, and do this while struggling with pain, illness, fear and fatigue. They will likely become overwhelmed by the messy mixture of public and private programs each with its own eligibility criteria, demands for proof, waiting periods (for example, after qualifying for Social Security Disability there is a two year waiting period before qualifying for Medicare), re-certifications, and other hoops to jump through. Most will eventually get some of what they need – as long as they can convince the right authorities of their neediness. Rights, dignity and pride, however, will be harder to come by.

Check out these organizations and websites: ADAPT HEARD HRW (Human Rights Dimensions of COVID-19 Response)