The Dignity to Fail

In 1972, after visiting a Swedish factory where intellectually disabled men assembled automobiles, Robert Perske coined the phrase “the dignity of risk.” Perske, a chaplain at a state residential institution for people with intellectual disabilities, wrote that there is, paradoxically, “a dehumanizing indignity in safety.” He said that “overprotection… tends to keep people from the risk-taking of ordinary life which is necessary for normal human growth and development.” Five decades later, scholars, policymakers, and service providers are still debating how to balance risk and opportunity, often with little input from disabled people themselves.

The right to risk and failure is contradictory. On the one hand, few would argue against expanding opportunities for meaningful work, a sense of purpose, and integration into community life for all people with disabilities. On the other hand, this expectation suggests that a meaningful life is impossible for someone who is not economically productive or able to live on their own, a repetition of the capitalist ideals responsible for marginalizing and stigmatizing people with disabilities in the first place.

Disability rights, many scholars argue, have become a narrative about assimilation, tolerance, and political correctness. An ideology of inclusion, which holds that a disabled person is no different from any other kind of person, actually threatens to mask difference, allowing the non-disabled to ignore the distinctive experiences of various forms of disability. What’s more, the burden for success then tends to be placed on the shoulders of the individual to either fit into the world of the non-disabled or to marginalize themselves.

Poet and activist Eli Clare describes this predicament through the metaphor of a mountain that people with disabilities learn they must climb, if not to “overcome” their disabilities (which by social and economic design will never happen) or to inspire the non-disabled with their courageous individualism (as if the value of a person with a disability is their value to others). As one parent of a child in my disabled daughter’s fifth-grade classroom once put it, in a well-intentioned but utilitarian and demeaning comment to me: “Your daughter is wonderful because she made my daughter a more caring person.”

There is dignity in risk, in having the opportunity to succeed, to fail, to not fit in, to create one’s own spaces for a meaningful life. In fact, most of the positive stories I’ve heard about someone’s struggles with disability and stigma involve some failures. Nearly every negative story about disability and stigma is about someone who has been sheltered, protected, and denied the opportunity to fail.

Just ask Reyma McCoy McDeid, an African American and autistic single mother, who is also a board member at the Washington-based Autistic Self Advocacy Network. “I was told I was a lost cause. People said, ‘You won’t do anything,’ and definitely not college,” she said.

In foster care for much of her childhood, Reyma moved from family to family. She was non-speaking until she was 5, and after that spoke in a monotone. She picked at her hair and rocked back and forth. She often got in trouble at school for behavioral issues, including flapping her hands and running into corners. “As a black girl with autism, I was a unicorn,” she said. “My biological family said I was retarded and made me a ward of the state of California.”

When she was 15, she left foster care and moved with her mother and her mother’s boyfriend to Rockford, Illinois, where her mother soon died from colon cancer. With no legal guardian, she went back into foster care, this time with a family that loaned her out for babysitting jobs and took away all the money she earned, including her federal disability benefits. “Despite being used and bullied, I managed to do well in high school,” she said in a phone interview, and in 1998, she gained admission to Iowa State University.

She eventually received two master’s degrees, worked in community-based nonprofits, and in 2015 became the executive director of the Central Iowa Center for Independent Living, an organization that helps adults with disabilities or who are homeless to integrate into their communities. They offer social skills training and job coaching, among other things. “The problem,” she told me, “is that we don’t put people with developmental disabilities in the position to fail. But trial and error, succeeding and failing, are the normal parts of the human experience. If you never fail, you won’t grow or change. Everyone deserves to fail.”

Perske didn’t suggest that people with intellectual disabilities do such dangerous jobs, but he did suggest that people had dignity and a right to take risks. Individual success and individual failure can be unabashedly capitalist concepts, as they are grounded in an ideology of freedom, autonomy, choice, and self-determination. But they can also be modes of compassion and inclusion.

The Special Olympics is an example of how inclusion offers possibilities for people with disabilities to experience both victory and defeat. For every person who wins a medal, there are dozens who do not. Those who don’t win still have the choice to continue to compete in the future or even to give up if they wish. They get to endure physical injuries, to cry, and to be angry or frustrated with themselves, just like any other athlete.

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The reality is that people with disabilities are significantly more likely to be paid less or be unemployed, and this is especially true for people with intellectual disabilities and serious mental illnesses. But it’s also possible to rethink our expectations about what constitutes success.

In 2018, Reyma McDeid ran for the Iowa House of Representatives and lost.