Not Your Teachable Moment

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (5)
  • rhonda
    3 years ago

    I can relate to how you feel. I have deformity in my hands and on occasion someone will say omg what happened to your hand? My response is always I have ra they usually reply with the usual yes my grandmother has arthritis. I nod and go about my bussiness. Sometimes I think maybe I’ll resond by saying I shut my hand in a car door or I was bitten by a shark. The thoughtof saying it brings a smile to my face. But in reality I will continue to respond the way I do and encourage people to read and understand that ra is beyond arthritis. I enjoy reading your posts and wish you the best.

  • Kelly Mack moderator author
    3 years ago

    Thanks for your comment and support Rhonda! Gotta admit, your idea of saying you were bitten by a shark gave me a grin. 🙂 I agree that your approach of bring open and educating people is a good one. Best, Kelly

  • Richard Faust moderator
    3 years ago

    Hi Rhonda, Thanks for sharing your experience. I have certainly witnessed the desire from an RA patient to come up with the perfect comeback (full disclosure: I’m Kelly Mack’s husband – and we also laugh at the possibilities). Along similar lines, this article pulled together thoughts from members of the Facebook community on how much to share about one’s RA: https://rheumatoidarthritis.net/living/community-thoughts-how-much-to-share/. Thanks for trying to encourage people to learn more.

    Best,

    Richard (RheumatoidArthritis.net Team)

  • lynne
    3 years ago

    I surely agree with you on all aspects!
    Unfortunately people have no clue about RA unless they have it!

  • Kelly Mack moderator author
    3 years ago

    Very true Lynn! Can’t understand unless you walk in the RA-shoes! Thanks for your support. Best, Kelly

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