Monday, November 28, 2016

Lessons Learned From My Community

I have not always felt a part of the disability community.  (This is strange to say, especially given that I have a twin sister who also has CP.)  Particularly, when I was younger, I found it hard to connect with other kids like me.  Early on, as a kindergartener, I had exactly one friend who was like me.  Then there was a long void until I was a teenager.  Then an even longer void until my 30's when I truly began to find "my people."  I wanted to share some lessons I have learned from friends in the disability community:

1.  Support For Each Other Is Vital:

From the time we were very little, my sister and I had the shared experience of having CP together. Having someone by my side who knows what it's like was crucial, whether I was a baby or a 10-year-old about to have my casts removed.  Having each other reduced isolation and anxiety during and after big events like surgeries.  Just having her there during those tough times, and knowing she understood, made a world of difference.

[Image is: Me, age 10, lying on a table about to have my casts removed.  Tara is seated near my head, holding my hand.  We are smiling.]
2.  Our Lives Have Purpose:

I was thirteen and at summer camp for the first time when I met a girl who would quickly become my best friend.  I don't remember the context of the conversation, but I do remember her telling me that "I believe I was put on this earth for a purpose and I'm going to serve it."  Those are powerful words at any age, but hearing them as a teenager was especially important.  The idea that people with disabilities had purpose was new, and life-changing for me.

3.  Our Words Have Power:

That same week, all the girls in my cabin were camping out in a tent.  One of them was going on about how much she loved someone or another.  I said, "You're hopeless...  I meant it in the way people say, "You're a hopeless romantic."  Lightly.  But being thirteen, I didn't deliver the expression right, and the result was instant.  We went from just having fun to the conversation stopping cold as she demanded, "Who said I was hopeless?  I am not hopeless."  I sheepishly admitted it was me.   It was the first time I remember genuinely taking responsibility for something I'd said that hurt someone.  I apologized: "I didn't mean it that way.  I'm sorry."

4.  We Need Role Models:

When Tara and I were babies, we were regular 2-pound trailblazers.  According to our aunt, the hospital where we were had never saved babies our size....until they saved us.  We were the first.  There were no adults with CP when we were growing up because they either had not survived infancy or (more likely) they were institutionalized, which was still common practice when we were born.  That said, the chance to be a role model for kids in college, for teenagers, even for kids with CP has been pretty incredible.  I know it would have been beyond powerful to see an adult with CP who was happy and fulfilled when I was growing up.  A role model with CP can mean the difference between a child hating their disability and realizing they are not alone.

5. We Need Friends With Shared Experiences

This final lesson echoes the first.  One of the most difficult parts of being disabled was being surrounded by people who weren't like me, and feeling like the only one.  It has been so validating to be able to connect with friends who have disabilities, or parents of kids with disabilities.  When we talk, there is an ease I haven't experienced nearly enough in my life.  We just connect.  We don't have to try or search for things to talk about.  We are not left feeling inferior because our hobbies are not active ones.  We are just with our people.  Enough as we are.

What lessons have you learned from your community?


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  1. I love this post...such important lessons!! <3 That picture of you and Tara is so cute...and I love that you had each other to get through the difficult times. I can relate to so much of this post! I wish I had met you guys earlier, but I'm glad that we have finally found each other, because knowing you has changed my life.

  2. Beautiful post! I have learned recently that the solidarity of the disability community can break through cultural and language barriers and that I have something valuable to offer as a person with CP having lived with disability from birth to others who became disabled later in life. Having a role model with a disability do something you want to do i.e dance,get a degree etc can be a great motivator for younger disabled people. I have gone from being mentored by a person with CP to being a bit of a mentor myself in a smaller way so I think having a mentor with a disability is wonderful. You were lucky to have Tara around during surgery!!!

    1. Thanks so much! Yes, we are very lucky to have each other!

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  4. The first and most important thing I learned from the disability community is that I am an OK person with a disability, not a defective "normal" person. I grew up with undiagnosed cerebral palsy and was not encouraged to think of myself as disabled. Being able to make that mental shift, which happened when I met others with disabilities in college, was key.

    I believe that role models with disabilities are key, both for children with disabilities and for their parents and non-disabled disability professionals. I'm a disabled disability professional, and find that parents and professionals are often interested in the point of view of other parents, but not that of adults with similar disabilities.

    1. Nightengale, Though I've always known I had CP that same mental shift happened for me in recent years - very liberating.

      And YES - I find the same. People want to know about CP and other disabilities but not from those of us living with the disabilities ourselves. Very frustrating.

      Thank you for reading!