Finding Our Place in the World With a Disability


I’m not sure when I became comfortable identifying myself as a member of the disability community. My experience comes from the progression of a degenerative eye disease called retinitis pigmentosa (RP). Over the course of a number of years I went through what Elisabeth Kübler-Ross describes as the “five stages of grief,” denial, anger, bargaining, depression and acceptance. Part of that journey was figuring out my relationship with the disability community. Just as important was figuring out my relationship with the non-disabled community.

I found my own experience, the experiences of persons with hidden disabilities, and the coming out process of members of the LGBTQ community often follow parallel paths. In each case, there is a process of self-acceptance and of exploring the territory of who’s an ally and who’s going to reject you for who you disclose yourself to be.

On any given day I interact with many people. Some are peers, some are people I serve, and some are people who serve me. Some of the interactions are with persons with disabling conditions; some are with persons without disabling conditions. Along the way I watch those who I interact with negotiate how they want and need to relate to me as an individual with a disabling condition. Some people turn out to be allies and some only see me as a disability. Often, the demands of the moment require we interact with each other, regardless of whether we see each other as whole persons or not.

Lessons learned:

“The disabled” is the only minority group anyone can become a part of at any time. There is a surprising amount of similarity in the process of getting comfortable with disability by people with and without disabilities. While no two people are the same, Kübler-Ross’ stages form an interesting theoretical basis for acknowledging that understanding our relationship with disability involves a process. It’s not at all surprising to find that different people move from denial to acceptance of disability at different rates.

The prefix “disruptive” is regularly added as an indicator of things that lead us to a different perspective on our world. Disability has the power to be a disruptive force in any number of ways. Understanding our relationship with disability often starts with acknowledging that the relationship exists.

Applying the lessons:

Regardless of whether we do or do not have a disabling condition, we have a relationship with disability. The biggest question is how well we understand that relationship. Some thoughts for examining our relationship with disability:

•How are persons with disabilities a part of your everyday life?

•How would you expect to learn that a friend, family member, or co-worker has a hidden disability?

•How would you expect others to treat you if you suddenly became a part of the disability community?

•How do others know you’re willing to accept them as a whole person?

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Getty image by Nastco.


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