Sarah Triano

On July 17, 2004, over 1500 people with disabilities from across the nation joined together in Chicago, Illinois, for the first annual Disability Pride Parade. As one of the main organizers of the parade, I participated in many media interviews leading up to the big day, including one I will never forget. It was a radio interview for a progressive news show in the Midwest, and at the end of the interview the host said to me, "You know, Sarah, I saw a picture of you the other day and you don't look disabled." So I replied, "Well you know, Tom, I saw a picture of you the other day, and you don't look ignorant!" After all, what does disability look like?

What is the first thing that comes to your mind when you think of the word, "disability"? For most people, "disability" conjures up images of canes and walkers, or the ever-prevalent international symbol of disability - the blue stick-figure sitting in a wheelchair that is on disabled parking places and accessible restrooms. The last thing most people think of when they hear the word, "disability," is me. To anyone on the street, I look like your typical, thirty-something young activist. You wouldn't know it just by looking at me that I have a hereditary and incurable primary immune system disorder.

Like most other people with hidden, or what I choose to call "non-apparent disabilities," I get some pretty common reactions from people based on entrenched societal stereotypes. Amanda Hamilton, a student at the University of Chicago with a learning disability, refers to these common responses to people with non-apparent disabilities as "the Great Golden Classics":

• Great Golden Classic #1: "You don't look disabled."

  If I had a nickel for every time I've heard this one, I would be a rich woman. Some well-meaning people say this to me as if they are trying to give me a compliment, but I find it incredibly offensive. As Amanda Hamilton points out, saying, "you don't look disabled," to someone with a non-apparent disability is like saying, "You don't look gay," or, "You don't look Jewish" (Hamilton, July/August 1997).

• Great Golden Classic #2: "You don't look disabled," Meaning: "You must be faking it."

  Due to my immune system disorder, I sometimes have difficulty walking so I have disabled plates on my car. Once when I was in college, I went to the university and parked in a disabled parking space. I had been up all night extremely sick and it was all I could do to walk to class. When I returned to my car later that day, someone had glued a sign to my windshield that read, "MENTALLY HANDICAPPED." Because they couldn't see my disability, the person who put that sign on my windshield mistakenly thought I was faking it and taking advantage of a right reserved for "truly disabled people"- people who fit their preconceived stereotype of what a disabled person looks like.

• Great Golden Classic #3: "It's All In Your Head"

  This reaction is widespread and is usually directed toward people with lesser known/understood disabilities. Rather than admit their lack of knowledge and understanding regarding certain disabilities, some people instead demean or trivialize symptoms and tell us it's all in our head.

• Great Golden Classic #4: "You could do it if you tried. You're just being lazy."

  According to Bek Oberin, an activist with a non-apparent disability, one of the main challenges for people with more visible disabilities is "proving they can do things against a general assumption that they can't." "People with visible disabilities," he writes, "often complain that people assume they can't do things they are perfectly capable of…But just as damaging as assuming people can't do things is assuming that they can" (Oberlin, January 27, 2001). People in the benign or early stages of multiple sclerosis, lupus, rheumatoid arthritis and other autoimmune disabilities are often accused of being lazy by those who have no idea of the internal symptoms accompanying these disabilities (Zaritsky, 1999), and students with learning and psychosocial disabilities are routinely referred to by their teachers as "lazy," "willful," "poorly disciplined," and "spoiled" (Smith, April 1989).

• Great Golden Classic #5: "Is it contagious?"

  Often, when people find out I have an immune system disorder, they take a step back, pull their child closer to them, or cover their mouth for fear they might "catch" what I have, when in reality, they are probably more dangerous to me than I would ever be to them. In her article, Fear of the Unknown, Diane Swanson notes how many children with psychosocial disabilities and other "invisible" disabilities, such as diabetes and epilepsy, "are sometimes shunned by others who mistakenly feel these [disabilities] are 'catching'" (Swanson, January 1989).

• Great Golden Classic #6: "You're not disabled enough."

  Even if someone has a disability, often it doesn't rise to the level of being considered a "real disability" by mainstream society, by the Disability community, and sometimes even by the person themselves. According to Sharon Dale Stone, in a 1992 survey of attitudes in Canada, there were many respondents "who thought an invisible disability was not a 'real' disability" (Focus Group Report for the Department of the Secretary of State, 1992). Stone also provides the following example:

  "[I am] acquainted with a man who has what he calls a bad back, that prevents him from lifting anything heavy. He is otherwise quite active and does not see himself as having a disability. The author also knows an elderly woman who is in excellent health, but will not drive a car anymore because she occasionally suffers from sudden and brief fainting spells. She does not see herself as having a disability any more than the man with the bad back. Both, however, are permanently limited in the activities they can perform. The stigma of disability remains profound, and it is the stigma that most people tend to think of when it comes to deciding whether to acknowledge their own disabilities" (Stone, 1995).

  It can take a lot for someone with a non-apparent disability to get to a place where they actually believe they have a bona fide disability, openly acknowledge that disability, and proudly identify as Disabled. The pressures for us to "pass" and deny our disability - and our community - are tremendous.

  As Cal Montgomery, a disability rights activist in Chicago, notes in her article, A Hard Look at Invisible Disability, "Although we may understand disability differently than others do, we have not, as a group, abandoned the suspicion of people who may not be 'really' disabled, who may be 'slacking' or 'faking' or encroaching on 'our' movement and 'our' successes. And we respond to people who challenge our ideas of what disabled people are 'really like' just as non-disabled people do - with suspicion" (Montgomery, 1991). Amanda Hamilton put it best when she said, "We are, in a sense, forced to pass, and at the same time assumed to be liars" (Hamilton, July/August 1997).

Living In-Between Two Worlds

Like many others with non-apparent disabilities, I've tried to make sense of this tension betweenhow I am perceived and what is happening inside my body. I spent the first sixteen years of my life "passing" (i.e. pretending that I didn't have a disability and trying to "pass" as non-disabled). When I was seventeen, I attended the 1992 California Youth Leadership Forum for Students with Disabilities and I remember sitting there on the first day of the Forum thinking to myself, "What am I doing here? I don't belong here. I'm not like these people. I can pass. I don't have a disability. I've overcome my disability."

As Dr. Carol Gill notes, like many others with disabilities, I had "internalized the public's fear and devaluation of disability" and had been socialized to "reject people with disabilities as valuable companions" (Gill, 1997). Goffman contends that people who pass "must pay a great psychological price, a very high level of anxiety, in living a life that can be collapsed at any moment" (Goffman, 1963). When attempting to pass as a non-disabled person, I was always afraid that someone would "find out" about my disabilities and expose me as a fraud. But later in life, when attempting to gain some sense of acceptance within the Disability community, I also felt a high level of anxiety. For many years, I agonized over whether or not I was "really disabled," and was always afraid that people would somehow "find out" I wasn't - but then I would get sick or experience Post Traumatic Stress Disorder (PTSD) symptoms and realize that I am, in fact, disabled. Susie Epstein explains this feeling beautifully:
"I constantly struggle with my own oppression, wondering if I am really disabled when, during good moments or days, I am not overwhelmed or disabled by pain. It's so much easier to identify myself as having a disability when pain…alters my gait, my ability to walk, and to stand or sit comfortably. When I cannot work because I'm in too much pain, I know without a doubt that I'm 'really' disabled, even if SSI, SSDI and Voc Rehab don't agree with me" (Epstein, May 1995).

More recently, I've come to a place in my life where I no longer feel like I have to disclose my disability to be accepted and accommodated. In fact, part of the power of having a non-apparent disability is being able to choose when and where I disclose my disability and to whom. Like many others that live permanently in the world between obviously disabled and non-disabled, I've come to embrace the lack of definition in my life, the ability to have a foot in both worlds, and the power to navigate between them. There is tremendous power in occupying the margins of two worlds. As people with non-apparent disabilities, we have social advantages and privileges that others in our community do not. It's time that we stop wallowing in our own self-pity ("oh, poor us - we're at the bottom of the Disability hierarchy"), get out of our victim mentality/role, own up to our own power and privilege, and start using that power and privilege to advance the cause of Disabled people everywhere.

References

Epstein, S. (May 1995, May 1995). Am I Crip Enough Yet? Life with a hidden disability - oppressed, oppressing and without support or community. Mainstream, 19, 15-19.

Focus Group Report for the Department of the Secretary of State. (1992). Ottowa: Decima Research.

Gibson, P. R. (1993). Environmental Illness/Multiple Chemical Sensitivities: Invisible Disabilities. In M. E. W. a. L. Holcomb (Ed.), Women with Disabilities: Found Voices (pp. 171-185): The Haworth Press, Inc.

Gill, C. J. (1997). Four types of integration in disability identity development. Journal of Vocational Rehabilitation, 9, 39-46.

Gilman, C. P. (1997). "The Yellow Wallpaper" and other stories. Toronto, Ontario: General Publishing Company, Ltd.

Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. New York, New York: Simon & Schuster, Inc.

Hamilton, A. (July/August 1997). Oh the joys of invisibility!, from http://www.ragged-edge-mag.com/archive/look.htm

Minkowitz, T. (September 16, 2004). Re: Tina Minkowitz email

Montgomery, C. (1991). A Hard Look at Invisible Disability, from http://www.raggededgemagazine.com/0301/0301ft1.htm

Oberlin, B. (January 27, 2001). Invisible Disabilities: What's So Special About Invisible Disabilities Anyway?, from http://www.tertius.net.au/id/column/2_whats_special_about_ID.html

Peters, S. L. (1993). Having a disability 'sometimes'. Canadian Women Studies, 13, 26-27.

Pilgrim, D. D. (November 2000). The Tragic Mulatto Myth, from http://www.ferris.edu/news/jimcrow/mulatto/

Smith, S. L. (April 1989). The masks students wear. Instructor, 98(8), 27-28.

Stone, S. D. (1995). The Myth of Bodily Perfection. Disability & Society, 10(4), 413-424.

Swanson, D. (January 1989). Fear of the unknown. Canada and the World, 54(5), 22-23.

Trubshaw, B. (February 1995). The metaphors and rituals of place and time - an introduction to liminality. Mercian Mysteries(22)

Zaritsky, L. (1999, Thursday, August 26, 1999). Open Your Eyes to 'Invisible' Disabilities. The Salt Lake Tribune.