Those of us with disabilities have had experiences that may seem truly horrible to those without disabilities. Some of us are wheelchair users. Some of us grew up in special education. Some of us have had multiple surgeries or use a respirator. All of these experiences fall into the category of things society considers to be “undignified.” My involvement in Disability Studies circles has shown me that a unique, disability-rights centered, progressive ethic regarding imairment and disability exists. For instance, during a presentation on scars and disability at the 2011 Disability Studies Conference, a presenter mused, "I'm an agnostic…but, if there is an afterlife, I can't imagine that Osama Bin Laden or Jack Kevorkian are enjoying it too much."
Recently, Tim Shriver of the Special Olympics wrote a blog post entitled “Raise Your Voice for Dignity!” concerning the recent travesty experienced by Amelia Rivera and her parents at the Children’s Hospital of Philadelphia. During a consultation at CHOP, Amelia’s mother was told that the hospital would not perform a kidney transplant because the three-year-old is mentally disabled by Wolf-Hirschhorn Syndrome. The same week brought another travesty concerning the plight of an unnamed woman with schizophrenia who was almost forced to undergo an abortion and sterilization (see these posts from the Boston Herald and Jezebel). These stories epitomize what it means to experience true indignity. (Psychological recovery from the knowledge of such inquity also merits about a gallon of Brain Bleach).
When I was growing up with a disability, it really didn’t feel like a “big deal” in and of itself-what made it problematic was other people’s attitudes. To put it another way, my disability entails deficits in spatial awareness and coordination. It is difficult to describe just how seriously this impacts my daily life, but it means that I get lost very easily. I trip, bump into things, etc and have always done so. Again, this is and was a nuisance, but I have always had a good sense of humor and self-respect, so I would let it go. I didn't know I was "disabled" and "different" until someone told me. Frustration, or even significant challenges, are not the same as “indignity.” I’ll never forget one teacher who blamed me for being bullied and tried to make me stay in at recess so this wouldn’t happen. When I went out to recess anyway and was bullied, she wrote home to my mother to tell her that it was my fault-for going outside during recess. THAT was indignity. I could provide copious examples of people in authority doing similar things while I was growing up. I watched as peers with disabilities experiencd the same tactics. Maybe the teachers and other adults who did this thought they were doing the right thing, but what they did was punish bullying victims instead of the bullies. Moreover, by doing this the bullies got what they wanted-the elimination of their targets. They were not forced to change-in fact, they were taught that their behavior is justified because there was something obviously wrong with their victims, who had been removed from activities that they, the tormentors, continuied to enjoy.
So it is when the adult world suggests abortion and euthanasia as a solution to human disability. This practice has the same effect as taking bullied students off the playground at recess. Instead of addressing social inequality and allowing disenfranchized people to experience the simple things we all enjoy, people who will find themselves in this category are removed from the playground of life, so to speak. In doing so, the original goals and perspectives of the eugenics movement are preserved.
Because of such experiences, people with disabilities often embrace a different concept of dignity than mainstream individuals. It seems to me that of late, the concept of dignity has been conflated with “propriety,” and “orderliness.” Conversely, indignity has been equated with “yucky” and “embarrassing.” These conceptions are wedded to current conceptions of autonomy, which is often defined by the ability to execute daily tasks without assistance (what disability advocates would refer to as accommodations) or any kind. In contrast, a disability rights centered concept of dignity centers primarily on the facilitation of autonomy and interpersonal respect. Accessable buildings, education and mediical care promote automomy, whereas inaccessibility creates indignity. A disability-conscious concept of dignity acknowledges that indignity is caused by social constraints upon the tools needed to facilitate personal decision-making. Dignity does not mean looking past someone’s disability, but accepting it as an integral part of who that person is and respecting that individual’s right to equality.
