Coming Out of Hiding
by Stephanie Cunningham
I was almost 30 when I began to work at the Minnesota State Council on Disability. One of my first assignments was to organize a protest against a well-known comedian who was coming to town for a concert. Many of us with disabilities felt his annual telethon was a major affront. He used pity to raise money. He reinforced stereotypes that people with disabilities want to be cured of their afflictions. He was even quoted as saying that an individual with a disability was half a person.
While organizing this protest I felt proud to be part of a political effort that was affecting the disability community. I remember feeling insulted by the telethon for years. Here was my chance to fight back.
One of my new Council colleagues was Margot, a woman who had been in the same state hospital for crippled children that I had. Though we weren't close then, I remembered her as a leader among the children.
In contrast, I hid in my hospital bed with the drapes drawn. I isolated myself -- not wanting to have anything to do with the other children unless the hospital staff said I had to. They were handicapped, crippled, different. I believed my family’s mantra: "You're just like your [nondisabled] brother and sister; there's nothing wrong with you." In my world, I strove to be as un-handicapped as possible.
I didn't belong with them -- I was normal; I just had a problem with my legs and feet.
The day before the protest, Margot asked what time I planned on getting to the rally. I stared at her for the longest time. I could feel the shame wash over me: I had no intention of going.
Before this moment, I hadn’t given it a second thought. But now, I couldn't imagine being seen with all those disabled people in one place. It was my childhood hospital nightmare all over again.
I'm not one of them -- I'm normal. I just have a problem with my legs and feet.
"Oh, I-I want to go, but I have plans. I can't cancel." Margot thought I was joking. Then she looked me straight in the eye and said, "No-o, you are going - it’s your job. Besides, it’s your moral obligation to fight something you've hated since you were a child."
All my life I had desperately tried to "pass" as non-disabled. But passing wasn't as easy anymore. I felt torn inside, not knowing who I was or where I belonged. On one hand, I felt like a fraud with my non-disabled friends and colleagues. On the other, I felt free to be disabled with the people I met through my State Council work.
At the same time I was organizing the protest, I was presenting a state-wide disability awareness and accessibility program. Through this work, I came face-to-face with my own conflicted sense of self. Sometimes I was still passing. Other times I used personal stories about growing up with a disability as a way to emphasize key training points or elicit involvement from participants. I wanted to have it both ways.
I now realize I was playing out the old adage: "We teach what we need to learn.”
Protest day arrived.
I parked in the ramp across from the concert hall where the protesters were scheduled to meet. Getting out of my car, I could hear the chanting of the demonstrators below. The older, non-disabled audience members peered down over the parking ramp walls. I heard, "What are those crippled people doing down there?" Still trying to pass and ignoring the terror gripping me, I walked with the curious audience as if I was one of them.
I finally reached the vocal, visibly angry and proud disabled group. After ten minutes of pretending I was happy to be there, I noticed television cameras from news stations pan my way. Without even thinking, I grabbed a protest sign and hid behind it. Seconds later, I peered out to see if the cameras were gone. In the clear, I headed home.
That night my sister called. She and a friend of mine had seen me on the news. She was laughing as she said, "We could see you trying to hide!" I was mortified.
Something had to change. I was not willing to continue this torturous dual life. I was exhausted. Up to this point, I had readily defended other people with disabilities without ever fully accepting my own membership into the community.
I am not proud of this story, and yet it is an important story. We all (disabled and nondisabled) grew up in the same American culture with the same messages about disability: the pity, the need to be normal, the assumption “the disabled” need help and are a burden to others. We're an ever-growing community of people being viewed as "less than." We are discriminated against because we walk, talk, appear or hear differently than others.
This was a life-changing event in coming to terms with my disability. Working toward self-acceptance included:
- the process of maturing and working with a psychotherapist with a disability;
- becoming politically educated about disability issues; and
- building intimate relationships with other disabled individuals while becoming involved in the disability community.
This process did not happen over night. I didn't do it alone. It has been a long, slow, rewarding and often painful journey. Thankfully, over time I have come to accept my disability as an important and valuable component of who I am. It is part of who I am, but is not all of who I am.
Some of the consequences of my trying to pass included:
- the inability to stand up for what I needed or wanted in certain situations (i.e. never requesting accommodations to do my job more effectively or not asking for assistance so I wouldn't appear needy);
- projecting my rage onto innocent bystanders when they would notice my disability which meant to me, I had failed at passing;
- physically hurting myself in the cause of appearing nondisabled.
Lessons I've learned include:
- Disability is not something that needs to be overcome; it needs be integrated into one's life.
- I and all disabled individuals have the right to equal opportunities: to work, learn, live, travel and socialize the same as nondisabled individuals.
- Laws like the ADA have helped to create an equal playing field for all and increase society’s awareness about disability.
I know I am not the only one who has struggled with issues of identity. There are many who are still hiding from their true selves; whether it is their real race, sexual orientation, ethnicity, age or disability.
I no longer try to pass. In fact, I am offended when someone accuses me of it. I’ve stopped hiding.
My hope is that you will find value and worth in your differences. What gifts are you hiding that could benefit the world?
Reprinted with permission from Stephanie Cunningham - motivational speaker, trainer, writer and visual artist is co-founder of the Lighthouse Group, a consulting firm specializing in disability awareness, keynote speeches and the Americans with Disabilities Act. She is recognized for her compelling storytelling, engaging lightness, and her exceptional ability to create safe spaces for candid discussions of controversial subjects. This piece is an edited excerpt of her book-length memoir in progress. Reprinted with permission. Copyright ©2005, 2003. Stephanie can be reached at steph.lighthouse@usa.net or 612-338-8142 (voicemail).
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