Not Your Teachable Moment

My husband and I are in an elevator and a mother with two young children step in. One of the young ones says: “why is she like that mommy?” as she points to me.

While I appreciate the curiosity of young children, I don’t know what to say. I’m tired and it’s been a long day. I don’t want to be explaining that I have rheumatoid arthritis and use a motorized wheelchair to get around. I don’t want to tell my life story to strangers and put them at ease about illness and disability.

I want to say: “I am not your teachable moment.” But I never do.

The mother in question explains that I need a wheelchair to get around and then the child begins asking questions about why I look the way I do (i.e. joint damage). And I feel like an object or traveling freak show. My anger is growing, yet it feels silly to become angry at a child.

My hope is that parents will teach their children about all kinds of difference, including illness and disability. I just, personally, did not volunteer to do so. While I have spoken at seminars and shared my story, I am not a traveling educator. I am a person just trying to live her life.

Sometimes I have more patience for explaining, but I do not feel that it is my responsibility to do so. I think people need to be willing to do their own learning and exploration, and not expect that I will teach them the ways of tolerance regarding the differences caused by my RA.

You may be surprised about the things adults say to me and ask me. At least children have the excuse of not yet knowing better, but grown people should. Strangers will ask me about my wheelchair, ask “what is wrong with me,” or tell me that they will have their church pray for me. It’s not that these things are necessarily wrong, but it is very presumptuous behavior.

I am willing to answer respectful questions at appropriate times and places. But I am not “on call” at all times and places for telling nice stories about how I use a wheelchair, have RA, but am still a real-live human being.

Instead, I am usually silent and let the child ask questions of their parent. The conversation may be about me, but it does not require me. And I feel the same way about adults. Everyone needs to figure out their own way to cope with difference. I cannot teach the world about treating people as people, behaving respectfully, and understanding that difference is part of the human condition.

With more people with a variety of health issues and disabilities living in our communities, others need to become more accepting (or at least tolerant) of these differences. With the Americans with Disabilities Act and other efforts to improve inclusion of people with disabilities in our society, there’s more need than ever for people to examine and change their biases and prejudices. As an individual I cannot take on this huge responsibility for changing the minds of all people about their perceptions of disability.

Instead I live my life as a complete person and I want other people to notice and take witness. I do have severe RA, resulting disabilities, and require the use of a motorized wheelchair. My hope is that people learn from my example that individuals with illnesses or disabilities are fully complex people. We may be different, but neither are we perfect or saint-like.  We want to be treated like regular people, because we are.

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