Editor’s Note: In honor of Global Accessibility Awareness Day, VisionAware is happy to share the inaugural post of a new series on disability led by Steven Wilson. Steven was diagnosed with Usher Syndrome at the age of 41. (Usher Syndrome is an inherited condition that causes partial or total hearing loss accompanied by gradual vision loss resulting from retinitis pigmentosa.) He is enrolled at the University of Arizona and plans to get his master’s degree in Rehabilitation Counseling.
The area of "Disability Studies" has been an integral part of Steven’s coursework this year. In his own words, “I did an Honors Contract with my Disability Studies instructors. This means that I did additional work for that class to ‘further my experience.’ In doing so, I’ve taken a huge leap forward, getting a head start and fantastic foundation for my memoir, and I am edging closer to checking off another one of my bucket lists goals. One thing that I realized after completing my memoir was that prior to access, I did terribly in school with very poor grades, and basically, I was forced to work from a very early age. Now, with more access to information and products like CART (Communication Access Real-Time Translation—like closed captioning in real time), I am able to follow the entire lecture instead of merely guessing at people’s conversations. This was a huge life-saver; I’m doing excellently, maintaining my 4.0 GPA! Simply because I’m being given a chance, I’ve crawled up and out of the sidewalk cracks society had let a guy like me fall through.”
Understanding Models of Disability
The Medical Model
The medical model, also known as the "tragedy model," looks at disability as tragic, an aversion from the "norm," and something that must be fixed. This view casts people who have disabilities aside, marginalizing them and labeling them as a class beneath those with fully functioning limbs, senses, or other "less-than-desirable" traits.
The Social Model
The social model reexamines how we view disabilities; rather than placing all responsibility on the individual, we should examine the environment in which we live. In this way, we can remove barriers that would otherwise restrict access and return autonomy to the individual who is disabled, allowing them to be productive, contributing members of society and have a fulfilling life of rich experiences.
My Struggle with the Medical Model of Disability in My Youth
Labeled disabled as a young child, I’ve fallen into the medical model of disability and have struggled my entire life as an outcast/outsider. Because the medical model “assigns predominantly medical significance and meaning to certain types of human variation,” (Simi Linton, "Reassigning Meaning") I certainly understand the significance of the medical model and the difficulties that come with such a label.
Needing to Be "Fixed"
It can certainly be said that while I was forced to wear prescription glasses as a young child, I did indeed, conform to the medical model of needing to be "fixed" in some ways. However, this could be deemed as a "necessary evil" to function in class and work environments as well as social gatherings. Wearing prescription glasses and hearing aids might have assisted me in some daily tasks; yet, no matter which perspective one chooses, it still fits into the narrative that I needed to be “fixed” in some way in order to fulfill societal norms and met societal expectations.
My Issues with Wearing Hearing Aids
Wearing hearing aids was a bigger issue for me because, for many years, I struggled with thoughts that I am doing so just to fit into society, for society’s sake, and not necessarily for my own benefit. My argument here is that hearing aids tend to bring in excessive ambient noises confusing a user, overwhelming a user, and in a lot of environments, making it even more difficult for communication. This, of course, doesn’t even begin to discuss the range of fear, stress, and frustration for all involved. All too often, I’ve felt as if I was wearing hearing aids to appease a society which is impatient, lacking in empathy, and very judgmental. This is evident by the numerous examples when I have asked a person who has known me for some time to repeat themselves. Then, in exasperation, that person asks if I’m wearing my hearing aids as if the hearing aid is the all-encompassing "fix" for any difficulties I might be having. Imagine their surprise when they find out that I am wearing hearing aids. The solution might be a different environment, improvement in their speech technique, or even different choices of words aid in our conversations.
Having been exposed to family members in wheelchairs, individuals with cognitive disorders, and veterans of foreign wars who were maimed or dismembered, I was taught at an early age not to use language that could otherwise be demeaning, belittling, or hurtful. Also, being a "disabled" child, I struggled with the very term "disabled" because, in my own views, I was very able and capable in numerous ways. In some instances, I outperformed some incredulous peers. I’ve had to fight my entire life trying to prove that I can do anything anybody else can do. In doing so, I had to exert twice as much effort for half the credit, very much like that of other groups considered to be "underprivileged." I would then hear the demeaning statements, “well, if you can do it, then I can do it!”
My Childhood Issues with the Terms "Deaf" and "Hard of Hearing"
It is curious that as a young child I had difficulties with the terms "deaf" and "hard of hearing," yet the reality was clear. I couldn’t hear very well, and I had no solutions for those terms. Then the term "hearing impaired" came along. However, this too, suggested that a problem existed. Thus, I was to continue being an outsider no matter what term eased my sore nerves on the topic. I could not escape the medical distinction: my hearing was subpar.
Referring to Myself Now as Deaf-Blind
Now, as an older adult with the definitive diagnoses of a retinal eye disease, I easily accept the term "deaf-blind" because it is often much easier to say as opposed to the mouthful, "extremely visually impaired/legally blind with a profound hearing loss." I also identify with that term. During those times when I’m not in the mood nor have the time to explain myself to the inquisitive minds, I provide myself with a quick escape, an easy out. This allows me to go about my business as well as avoiding all the pitfalls of a tragedy model conversation by simply stating, “I’m deaf-blind.” In these instances, I sometimes wonder if I am contributing to a stereotype that people may associate with the term of being non-communicable, distant, and perhaps even lacking in intelligence.
Taking the First Step in Changing Societal Views for People Who Are Disabled
While I may have participated with societal constructs of the medical model for my life to benefit in some way or another as society deemed fit, I had the instructional guidance from a very forward thinking parent and from examples surrounding me in my life. Taking a step back and seeing origins, construct and usage of constructs, such as the medical model, is the first step in changing societal views for disabled individuals to achieve greater autonomy, happiness, and an improved sense of personal well-being.
Read More About Steven
Going Back to School with a Dual Disability