By Christopher Krentz
In 1848 a deaf man in Ohio wrote that hearing people often asked him if he was happy. When he responded that he was as happy “as any man,” his questioners expressed surprise, saying that they “should be very unhappy” if they were deaf.
Today, when disabled people express happiness or even pride, they are still often met with suspicion. How could that be true?
One reason for that behavior seems to be our inborn instinct for self-preservation, which is very strong. People appear naturally to shrink away from reminders of bodily fragility and regard disability with discomfort, pity, or fear. Another factor is that we are not good at imagining what a life with a disability we do not have would be like.
Sometimes disability awareness events will offer disability simulations, which may initially seem to make sense. What better way to understand the experience of disability than to put on earplugs, or blindfolds, or whatever? As children at Halloween or adults going to costume parties know, trying on different identities can be fun, too.
The trouble is that simulations often wind up confirming people’s assumptions that having a disability is frightening and sad. They typically experience relief when they remove the earplugs and feel whole again. Rather than promoting empathy, the process actually often increases the stigma of disability.
Simulations miss the true picture. When a hearing person puts on earplugs, they do not suddenly know sign language or have deaf friends or decades of experience living as a deaf person. They do not experience the lives of me or other deaf people, except perhaps the sensations of a recently deafened person who has yet to grow into her new identity. If I donned a blindfold, I might enjoy the temporary challenge of trying to hit a piñata, but I would not gain special understanding of someone who has been visually impaired for years.
We could extend this to any disability: When we think of a disabled person solely in terms of what they cannot do, we reduce that person’s humanity, worth, and capacity to have a good life. Such thinking is distressingly common and can have far-reaching consequences. In the case of prenatal testing, it can even help to determine who gets to live. Yet as Andrew Solomon shows in his compelling book Far from the Tree, people with Down Syndrome, autism, and other disabilities often surprise and enrich families. (If you are not one of the three million people who have watched Solomon’s eloquent “Love, No Matter What” TED talk on-line, I highly recommend it).
The psychologist Jonathan Haidt points out that many people think they would rather be dead than paraplegic, but they are wrong. “Whatever happens, you’re likely to adapt to it, but you don’t realize up front that you will,” he writes in The Happiness Hypothesis. In other words, our ability to imagine our lives with a newly acquired disability is not good: we focus on what we could not do, what we would lose, instead of on how we might adapt and thrive.
Yes, some disabilities involve physical pain, foreshortened lifespans, or other serious challenges, which I do not want to minimize. Yes, medicine has great value in our society. However, the habit of thinking of disabled people solely in medical terms, as damaged people needing fixing, misses something precious, it seems to me: it misses the person and it misses human resiliency.
This topic is crucially important. Fifteen percent of us have a disability ourselves; all of us know a disabled person. Like anyone, disabled people, especially newly disabled people, internalize the attitudes of those around them. If everyone responds to them with pity, condescension, or quiet horror, that’s destructive to their sense of self and well-being.
Fortunately some recent developments give us cause for optimism. First, a shift has occurred from viewing disabled people as medical problems to seeing them as people with rights. This year marks the 25th anniversary of the landmark Americans with Disabilities Act of 1990, which mandates access and bans discrimination. On a global scale, in 2006 the United Nations adopted the Convention on the Rights of Persons with Disabilities, which has similar aims.
At U.Va. during the last two decades, I have witnessed the Grounds becoming more physically accessible. Ramps now lead up to Alderman Library, closed captions now appear on televisions at gyms, and we have curb cuts, automatic door openers, and the like. I am always gladdened to see nondisabled people (who may be on bicycles or carrying boxes) benefiting from these enhancements, too. Making an environment accessible creates advantages for many people.
In addition, disability is now more present in our teaching and learning at U.Va. Dr. Marcus Martin, Vice President and Chief Officer for Diversity and Equity, had the vision to establish a subcommittee of the Diversity Council, called the Disability Advocacy and Action Committee (DAAC), to work on disability across the spectrum on diversity on Grounds and beyond. Among other projects, with funding from the College Dean’s Office, the DAAC helped to give birth to a new Disability Studies Initiative, which aims to promote the academic field of disability studies at U.Va.
Now students can take courses in topics like “Autism: From Neurons to Neighborhoods” (Psychology) and “The History of the American Deaf Community” (American Sign Language and History). Upcoming events like a lecture by deaf visual artist Nancy Rourke; a performance by Nina G, a comedian with a disability; and an all-day symposium on February 19, 2016 called “Disability across the Disciplines” will add to the visibility of disability on Grounds away from a medical model.
Exciting things are happening related to disability at U.Va., and this new blog provides the chance to explore some of them. Special thanks to Angela Nemecek, webmaster John Rhea, and the Disability Advocacy and Action Committee for getting it started. Hopefully it will help all of us to learn.
Christopher Krentz is an Associate Professor of English and American Sign Language at the University of Virginia.