“It’s always something with you,” a friend said to me in an off-handed manner. On this particular occasion, I had cornea problems that made it difficult for me to see and to be in bright light. I responded to the light-hearted comment with a heavy heart. Is it always something with me? Is it always something with everyone, because that’s life? Or is “it’s always something with you” the very definition of chronic illness? I concluded that the answer to all of these questions was “yes.”
I am not a scholar of disability studies, but I have read astutely argued articles in this field, and I recognize the ways in which ability/disability intersects with gender and others of the legally “protected categories.” I have appreciated the op-ed series that The New York Times has done on ability studies and, in particular, this beautiful piece written by Washington and Lee graduate Pasquale Toscano (6-14-17). Toscano talks of the accident that changed his physical capacities and of the deep thinking he practiced afterwards. He writes: “I also began to consider how best to convey the epistemologically enriching experience that learning to live with a disability can be. I discovered the work of people like the scholar David Bolt, whose article on “positive stereotyping” left a lasting impression. He argues that depicting disability as the source of supernatural capabilities troublingly obfuscates the accomplishments of impaired individuals who must navigate stressors and barriers unknown to others.” I could not agree more. When people ask you how you’re doing, they want to hear that you’re doing well, and you want actually to be doing well. Feeling well and strong in mind, body, and spirit makes us quite fortunate. Nevertheless, there is a wellness pressure, linked to United States culture of 24/7 happiness, that makes it difficult to have a tough day and to admit you’re having a tough day. No one is supposed to be a “Debbie downer.” If you admit that something is off, then you’re supposed to follow up with the narrative of overcoming; you have overcome the obstacles, vanquished them, and now you’re back to your happy, active self. When this is true, great. But sustaining a wellness narrative can also mask more profound issues of access and mobility.
My mother had a heart attack in 2009. Both her parents had died of heart attacks, back when they seemed to happen like a lightning strike, from life to death in a flash. Medical science and my mother’s physical and mental strength formed a dyad of recovery in a new age, and my mother lived quite well and continued to work full-time until she had a stroke in 2014. The stroke took more of a toll, required longer-term physical, occupational, and speech therapy, and demanded a higher level of care and vigilance. At some point, I started to notice more of what my mother couldn’t do, rather than marveling at the many things she still could do. It wasn’t until this last stretch of illness that I learned how well she had navigated those barriers and stressors that Toscano mentions. I started to think of my mother not as sick or disabled, but quite able to do the most with the faculties she had.
Although my chronic illness (primarily rheumatoid arthritis, with some complications tossed in) is different from heart disease, it does require that I navigate the world differently than I used to. (A friend of mine in her 60’s remarked that we need to find a new form of exercise with each new decade. I think she’s right.) For 25 years, I worked out most mornings at 5:30 or 6:00. An arthritic body takes a while to unfold in the morning, to disarm the pain, to wake up and stretch out. Therefore, mornings now demand a gentler approach—a slow rising from bed, a hot shower, and, if I’m lucky, 20 minutes of qigong movement and meditation. This departs dramatically from the 2000 yards I used to swim or miles I used to run. It feels like failure, and yet should be interpreted as an “accomplishment of an impaired person,” as Toscano poignantly declares. Medications have side effects, too, and so traversing illness also means weighing the benefits and drawbacks of certain medications and then managing the new side effects. I was on prednisone for seven months last year and gained 15 pounds. This was (and is) not good for a person interested in staying in motion and feeling healthy. But the prednisone reduced arthritis pain and immobility and allowed me to get the disease under control. My heavier frame must look like a lumbering failure, but, until I can manage it otherwise, I need to interpret it as a temporary requirement for chronic pain management.
Wheelchairs, orthotics, dark glasses, arm braces, and hearing aids now appear empowering to me, the very objects that help us to move through a world made for the ambulating, lifting, seeing, and hearing. This useful piece from The New York Times (11-1-13) outlines the state of disability studies in the United States and reminds us that the increase in chronic illness and higher numbers of aged persons indicate that we should be talking about “the temporarily able-bodied,” that many of us will go through periods of being more and less “able.”
When we band together to demand equal rights, we are saying that the world is constructed in a certain way that is advantageous to some and disadvantageous to others, and that there are remedies available to limit the disadvantage. The passage of the Americans with Disabilities Act (ADA) in 1990 became the key to ensure equal access and opportunity for persons with disabilities. (At the same time, let us not forget that our current “president” has demonstrated his insensitivity towards persons who are differently abled, thus underscoring the need for awareness and protection of civil rights laws whose content and enforcement seem increasingly precarious.) In an article published in 1991, one year after the passage of the ADA, Robert L. Burgford, Jr., writes: “Broadly worded statements outlawing discrimination were the optimal approach to statutory draftsmanship in light of the controversial nature of the civil rights acts passed in the 1960s and 1970s. The drafters of these statutes needed to draft language that would be palatable to a majority of the members of Congress while having a meaningful impact in proscribing discriminatory actions. More detailed standards regarding the application of nondiscrimination principles were left to be developed by regulatory agencies and court decisions” (26 Harv. C.R.-C.L. L. Rev. 413  “The Americans with Disabilities Act: Analysis and Implications of a Second-Generation Civil Rights Statute”). Indeed, we often have to count on businesses and corporations “doing the right thing,” or interpreting these broadly-worded statutes in a generous fashion, for the proverbial playing field to be leveled.
We know from many sources (e.g. UC-Berkely HR website; High Speed Training site; numerous articles listed on Google Scholar) that offering equal employment protections is not a zero-sum game. In other words, when we limit disadvantage, we do it to the benefit of all. We make the world a kinder place that is more easily navigated by more people.