Dear ABILITY Reader,
In this issue, writer Betsy Valnes discusses her experiences with a disability that is not outwardly identifiable-a hidden disability-and the lack of inclusion she feels at times not from able-bodied people, but specifically from the disability community. Her article led me to reflect on a dilemma encountered by all minority groups in society-they are unconsciously subject to the same biases held by the society as a whole.
All of us who are disability activists and educators are outwardly cognizant of our community’s diversity. We give lectures and workshops explaining that the majority of disabilities are hidden; that people with disabilities are not others, but rather are largely like everyone else; that being nondiscriminatory and inclusive toward people with disabilities means paying attention to important issues like physical access, but is also much broader, encompassing accessibility of electronic technology, adaptation of educational methods, adjustment of work schedules and work environments, etc. We try to raise people’s awareness, show them our perspective, get them to ask rather than to assume. Nonetheless, we forget sometimes to practice what we preach.
I frequently find myself in a similar predicament as a female physician. When I enter a hospital ward, because patients are culturally familiar with women in the roles of nurses and social workers, those are the roles they expect me to hold, and I frequently have to introduce myself more than once before it registers with them that I’m the doctor. In contrast, the male nurses and social workers are often assumed to be physicians. I am not bothered by this phenomenon because I understand the power of cultural expectations-what does bother me, however, is that despite my daily experiences, I find myself making the same assumptions. When patients tell me they have just seen another doctor, I reflexively ask, “Well, what did he say?”
Recently I represented ABILITY Magazine in an on-camera interview chronicling the contributions of various disability leaders. A moment of tension arose when the interviewer-assuming because I look healthy that! do not have a disability-asked how I felt as an able-bodied person writing about disability issues.
I have been asked that question many times, and I never know quite how to answer. I do have a disability, and it affects my ability to function for a significant part of my day on a near-daily basis. But for other parts of the day I have a reprieve. How, then, should I define myself? It is true that I don’t have exactly the same issues as someone who has an immediately visible disability-when people see me for the first time, for example, they don’t question from my outward appearance whether I can do my job. But they have made other, sometimes harsher judgments when I’ve needed to adjust my schedule, for instance, because of a flare-up of symptoms. Because people can’t see my disability, they often can’t conceptualize why I need flexibility, and I’ve struggled against the perception that I am callously failing to live up to expectations. I have had to constantly remind many employers that accommodations for me are beneficial to them as well, and that I can be tremendously effective if allowed to work during the parts of the day when I am healthy and so the goals of the disability movement are very personal and real for me.
I don’t have a solution to the dilemma of how our diverse community can avoid repeating among ourselves the legacy of exclusion we’re trying to change. I only know that the lesson we are trying to impart to our society as a whole applies to us as well-despite significant differences among us, we are more alike than we are disparate. And as we work to raise awareness and change attitudes, we can’t forget to also remind ourselves.
Gillian Friedman, MD
Managing Health Editor
Do you have an interesting story from your life? Do you know someone who has made an impact in your community? Do you have topics you would like to see in ABILITY?
Subject: Getting Involved