Today, I had the pleasure of reading Julia Reinstein's article, "It Happened to Me: I Temporarily Had a Physical Disability." It was a very thoughtful article, and from both the comments and my own personal experience, there is a lot of content with which people with disabilities can relate: the ways in which disability can interrupt life, both large and small; the necessity of a support system; the soul-crushing wait for a diagnosis; and most importantly, the lack of empathy from many individuals without disabilities. Although Ms. Reinstein's acute illness was resolved and she is healthy now, she is able to translate the trials of individuals with disabilities for those who have never experienced a chronic condition, as well as relate her experience of illness discrimination.
Ms. Reinstein recognizes that she doesn't grasp the full scope of disability discrimination, since she will not have a disability for her entire life. She will never have to alter her career around her illness, wonder if people will think she is lazy or incompetent because she needs help and consideration, experience life-altering progressions or relapses of disease, or be judged as "not looking right," in the case of a visible disability, or "not looking sick enough," in the case of an invisible disability. Moreover, Ms. Reinstein experiences privilege in that her voice is heard as a spokesperson for disability as an individual without a disability, while individuals with disabilities often have their voices stifled and dismissed as arbitrary complaints. People with disabilities want to bring the prejudices they face to light, but many may face judgment and dismissal -- or worse, retaliation. Exposing institutionalized discrimination against any minority is not "whining," even if it is unpopular; it is necessary, and the concerns of individuals with disabilities should be heard, not only from their allies, but from their own selves, without fear that disclosing their medical status will lead to negative consequences or harsh judgment.
People need to fully grasp the point of Ms. Reinstein's article -- to show empathy, and to show this empathy for individuals who have long-term illnesses and disabilities as well. Individuals with rare diseases may never have a true diagnosis of their condition, or may wait years and decades for an accurate diagnosis. Even individuals with more common chronic conditions may go through years of testing and doctors to discover the cause of their symptoms. These people will not just experience a few weeks of interruption in their lives following their diagnoses, but years. Ms. Reinstein is correct: we do not want pity; we want understanding, understanding that we may have needs that are different from those of the rest of society, but that we are still useful, creative and productive members of society. Most importantly, we want our voices to be heard on issues that matter to us, and for others to recognize our concerns about discrimination as valid and to take action to fix prejudicial attitudes and injustices towards individuals with disabilities.
While the voice of the "able" is very welcome in a discussion of disability, those who actually deal with disability and discrimination should not be afraid to speak up and voice their opinions and concerns. Those without disabilities should be willing to listen, empathize and act. While the voices of allies cannot replace the voices of individuals with disabilities, they can work to magnify them.