If you’re an adult living with a disability, you’ve probably heard at least one of these statements in your life.
– Oh, your disability/disease/illness/pain isn’t so bad. Now my relative so-and-so they had a bad condition. This, of course, completely ignores the fact that even among people with the same disability or chronic condition, each person’s experiences and symptoms are different. It’s not a competition to see whose are worse.
– Attitude is everything. While a positive attitude definitely can help you cope, adapt, and adjust to all kinds of life changes, all the positivity in the world can’t magically wish away a disability. It’s just plain insulting to imply otherwise.
– Have you tried X to get better? or If you just did X, you’d be cured. I recently heard this as a knee jerk response from an anesthesiologist who knew virtually nothing of my medical history. I reported him to the facility’s patient advocate. Most people with disabilities have a good understanding of their conditions, what works and what doesn’t – and when they don’t, they’ll reach out.
People with disabilities are regularly bombarded with messages like these and others telling them they are not OK as they are. These range from media stories that focus on “heroic” overachievers in the disability community (also known as inspiration porn), to well-intentioned but misinformed family, friends, caregivers and medical professionals wanting to push their own “helpful” ideas for improving your life. Underlying much of this is the assumption that people with disabilities must constantly strive for a cure of their condition, or at least steady improvement; otherwise they are failing. This is a very polarizing way to look at the complexity of people and the wide varieties of disabling health conditions.
Speaking of polarizing, it was no surprise to me that there was a rapid backlash to a program entitled “The End of Disability? Neuro-tech’s Future Frontier” at the recent South by Southwest® (SXSW®) Conference and Festival. The intention, according to a series of supportive tweets and to an interview with SXSW panelist and attendee Liz Jackson, was to showcase technologies and medical advancements that could improve the lives of people with disabilities. Like recent coverage of the The Cybathlon on HBO’s Vice News episode Our Bionic Future, two SXSW panelists discussed a day when people will no longer be disabled because of bionic implants.
According to Ms. Jackson, however, “it felt that what the panelists put into the room and what the room wished to say in return were two entirely different things.” As one offended person wrote on Twitter, “You want to do a panel on how prosthetic tech ASSISTS Disabled folks? Great, and don’t you dare call it #EndOfDisability.”
Our Bionic Future featured people with disabilities walking, using new electronic limbs, nearly perfectly cured of Parkinson’s disease through deep brain stimulation and more. But while tech and medical conferences and programs push the not-so-subtle and unrealistic idea that everyone can be “cured” and free of disability, Ben Mattlin offered a contrary view in a recent New York Times op-ed.
In Cure me? No thanks, Mr. Mattlin added his voice to the “resistance to the cure mentality,” writing that his objection comes from a need “to make friends with the disability that [is] inherently a part of me.” For him, SXSW’s “End of Disability?” program – or at least its title – showed a lack of understanding of how words truly matter.
Much of Mattlin’s essay is devoted to describing a new drug that can treat spinal muscular atrophy (SMA). In children it can cure – or kill. In adults, it may slow or stop the progression of SMA, but the long-term effects are not yet known. Though all of his reasoning made sense, I found Mattlin’s conclusion disheartening and surprising:
I acknowledge that as I age with SMA, I am troubled by my increasing difficulties swallowing and breathing and the now complete loss of use of my hands. Yet even if the drug did help head off further debility, I’d have to face feeling like a traitor to the movement, a turncoat to the cause of disability pride.
When I read this, I wanted to scream at my screen.
I know it can be terrifying, but if we are to be independent, it is essential that everyone feel free to make the best choices for themselves – without having to worry about what “the community” may think! It is surely important to accept our lives as they are in a given moment, to find some contentment, even if things aren’t the way we’d like them to be, disability or no. Still, we should never be so tolerant of the status quo – or afraid of others’ intolerance – that we let the fear of change prevent us from checking in from time to time, learning of advancements, trying treatments that may improve our quality of life (and as a result, benefit the people around us and the community at large as well).
Somewhere there’s a middle ground. Even if we had a perfect understanding of the human body and mind, as well as an infinite budget for medical and technological research, we are complex and diverse beings, not characters from TV shows like The Bionic Woman or The Six Million Dollar Man (“We can rebuild him. We have the technology. We can make him better than he was. Better…stronger…faster.”). It’s just not that easy. Not every person or condition can be cured – and not everyone would want to be, if the risks are too high compared to the potential benefits, for example. Having options in treatment, that are not forced on everyone cookie-cutter style, is the key to true independence.
Anyone who has the passion for it can become an advocate for people with disabilities. I see it often in loved ones, the staff at ICS, volunteers at other organizations and health care facilities who support equal care and equal access. But when push comes to shove, it’s our bodies, our lives, our disabilities – and of this I am sure: there’s no one-size-fits-all “cure” for what ails us – any more than there is for any human being.