Guest Post: On being my own Advocate

This post comes from 22 yr old Jennie, a member of the With Her Heart community and fierce advocate– for others and for herself. 

I thought a lot about what I wanted to say for my first ever guest post, and I surprised myself with what I came up with after a lot of thought and prayer.

    I was born with something called Spina Bifida, which is a birth defect that occurs when the spinal cord does not develop properly. It occurs with varying degrees of severity, and mine is on the less severe side. I wear braces to help me walk, but I am able to walk. I can’t run or feel my toes or the bottoms of my feet, but those things aren’t really big problems compared to the complications I could have had.

    I feel very fortunate to have been born into a family that does not treat me differently because of my disability. For the most part, I had what I would consider a normal childhood. The only times I really felt the effects of my disability were the times I had to have surgery, which usually resulted in a several day hospital stay followed by what felt like a lengthy recovery.

    Growing up, I took pride in not needing help. I participated in regular P.E. classes, had no Individualized Education Plan or other formal accommodations my entire thirteen years of public school, and sometimes took the stairs instead of the elevator just to prove I could. I grew up in a small town where I did not know anyone else with a disability for most of my childhood, so I learned to downplay my disability as much as possible so that I wouldn’t be left out. I had found my coping mechanisms, and they were working pretty well. Then, I encountered the real world.

     Months ago, I saw a presidential candidate mock a disabled reporter at a widely televised event, and as a citizen and a first time voter, it was hurtful, but it was nowhere near as hurtful as watching so many people, instead of condemning this instance and demanding better behavior from those seeking the highest office in the land, immediately jump to that candidate’s defense. He didn’t really mean it, he was just trying to make a joke. That’s just how he is, we should all laugh it off. Or worst of all, the denial that it even happened, despite the fact that there is video footage of it happening. I am a disabled person living in a country where my leader can get away with mocking people like myself. And yet somehow, the fact that he also mocks countless other groups of people is supposed to be sufficient comfort. Equal opportunity mocking, I suppose you could call it.

    I don’t usually mention politics in my writing, but there was simply no way to tell this story honestly without mentioning that incident. It was a turning point for me, because it opened my eyes to the fact that advocating for myself and other people with disabilities is not just important, it is essential.

    My journey of learning how to advocate for myself has been a gradual process, beginning around the time I went off to college and started learning how to ask for help when I needed it, in a way that made me feel empowered instead of embarrassed. That’s something I’m still learning. I still sometimes downplay my disability in certain situations, and I still sometimes take the stairs just to prove that I can. But I do not apologize for my disability. It is a part of me, whether I like it or not. Myself and others with disabilities deserve the rights that everyone else deserves. When those rights are not given to us automatically, we have to speak up. It is essential to our lives. 20180320_201922

One thought on “Guest Post: On being my own Advocate

  1. Terri Nida says:

    I am also disabled – a quadriplegic. Almost 5 years ago I fainted in my kitchen and woke up paralyzed from the shoulders down. It’s been quite a ride. Thank you for an informative and inspirational post.

    Liked by 1 person

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