I was born in the mid-1970s with spina bifida and hydrocephalus and all the challenges that go with those conditions. I wasn’t expected to function, and even from Day 1, my mom was told to put me in an institution.
The 10 “lessons” I discuss below were messages or impressions I received from others and internalized for a long time. My process of “unlearning” involved recognizing myself as separate from people’s perceptions of me then realizing my true worth as an individual. I now truly believe what people say about me, good and bad, reflects them, not me.
1. I’m “ugly.”
I may not be the most conventionally beautiful person, but I have never had a higher self-image than I do now. Society has a very limited view of beauty based on the Photoshopped images in magazines. Those of us with disabilities don’t see ourselves represented and are often left feeling less than. I realize now everyone is beautiful, and all negative comments about my appearance are about insecurity and aren’t real.
2. I’m “stupid.”
As a child, I was diagnosed with learning disabilities, attention deficit and visual-perceptual disorders and was told I would never succeed. I now have two bachelor’s degrees and a master’s degree. I’ve been a practicing social worker and am now writing a transformational book for others with disabilities and speaking to groups and organizations about engaging our huge power to change the world for the better.
3. I have to look/act “normal.”
As a child — and still — I’m told to “sit up straight,” “lift my head” and “talk faster.” I have felt very self-conscious about how I present myself. Only recently have I begun to fully accept myself and make self-improvements on my own terms.
4. I’m not meeting the standards.
In school, my reports would always say I was a kind child but never paid attention in class and never handed assignments in on time. No one addressed my needs or helped me to develop effective strategies. In my adult life, when I say I’m sick, it’s interpreted that I’m unable to do any work. When I leave the house or have fun, it’s interpreted as me being completely well. I learned how to handle lifewhile gracefully coping with pain.
5. I’m “not capable.”
No! I am capable of just about anything that’s important to me. For me, first, I believe no one will ever know what a child, or adult, is capable of until they try. Second, some things that seem important for others just don’t matter to me.
6. I need taking care of.
I got coddled as a child because I was sick a lot, even when I wasn’t actually sick. I was pitied for what other people perceived as my struggles but not given quite enough coping skills or life skills in my early years. The result is that when I gained my “independence,” I had none of the skills to go along with it. I eventually learned the skills, but it was so much harder this way.
7. The professionals know best.
No! People know a lot in their area of study or expertise, but they’re not in my shoes. The problem is that some of them haven’t gotten the memo. I have learned it’s best to partner with my professional helpers, give them the information they need to help me, follow their advice if it feels right and communicate with them.
8. My voice doesn’t count.
I remember being left out of so many discussions and meetings that were about me. My mom had to force some people to include me against their will. I have since developed a very strong voice.
9. I’m “entitled.”
When I was younger, I would be so offended if someone refused to help me or didn’t respond as I thought they should. I have learned that everyone has limitations, even if I don’t know them, and people are all deserving of respect. I don’t have to like it, and I can advocate for change, but if I rant and rave, pull a “poor me” act or ever dare to be mean to someone because I’m upset, I will never be respected.
10. I’ll never…
When I was born I was never supposed to survive, walk, talk, learn or live a normal life. Having defied all expectations, I now know the only things I’ll never do are things I choose not to attempt.