Although I finally closed comments on my “Not a Hero” post, likes and feedback continue to roll in. Nothing I’ve ever written has generated such a response before, and I am so thrilled and humbled. Perhaps most of all, the feedback that has meant the most to me is that of adults with disabilities, who without exception, have told me basically, right on, I’m not a hero, just a person living my life.
And while it may sound counter to my “not a hero” message, I find them, the people who have left these comments and messages, incredibly encouraging. Not in a patronizing way, but in a window to the possible future for my daughter sort of way. Just as I want my girls to know and see strong, smart women out in the world as encouragement, as windows to their possible futures, I want Claire to see normal, everyday people with disabilities to let her know that there are all sorts of possibilities for her life. Possibilities that include meaningful work, deep relationships, fun hobbies, athletics and exercise, and anything else she may so desire.
When we got our diagnosis, I knew nothing about spina bifida, and our doctors seemed to know very little about what we could expect for our daughter, because spina bifida includes such a range of disability and experience. This whole journey has been characterized by a deep hunger for knowledge on my part. I remember finding the blogs of parents raising kids with SB, and just putting a face, a beautiful KID face, to what was at first a scary and mysterious disease gave me so much peace. Now, as she grows, I find myself still hungry, not so much for facts, but for glimpses of what her life might be. And the more I read and hear from adults with disabilities, the more I realize that my hopes for her as a person with a disability aren’t that different for my hopes for my girls as future-women. I want freedom, autonomy, and bravery for them both. I want them both to have the courage to stand up to both sexist and ableist oppression that they may encounter in their lives.
It’s why I related so well to this post, which I found via Rachel Held Evans. The writer talks about seeing adults with disabilities in a new way as the parent of a child with a disability, and finding them inspiring, and in the piece she tries to draw a distinction between that and the patronizing, limiting “inspiration” I addressed in the “Not a Hero” post. I think, as Ellen seems to be saying in her post as well, that the difference is largely a problem with the word “inspiration.” We rightly bristle at the idea that our kids are “inspiring” just for navigating the world in the only bodies they have ever known– that’s no more noble than any of us learning to navigate the world in the only bodies we’ve ever had. But we also, like any other parent, are searching for role models for our kids. Not role models as in Batman or even Olympians, but actual people, whose lives look like their lives. We face a future full of unknowns, and we just want to see that there are lots of possible futures, and they’re good. I’ve heard moms of boys talk about finding good male role models for their sons. As a mom to girls, I feel no qualms talking about my desire for good female role models. And as the mom to a daughter with a disability, I look for the same.
I’m thankful my post has connected me to so many perspectives from so many voices I wasn’t reading before. I’m just starting out, and I have much to learn in order to best raise my daughters to be women in the world.
erniebufflo's south & west kitchen 
I’m really not one to flatter anybody, but…You are a wonderful role model for everyone. I see a good future for your daughters.
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Your sentiment definitely holds true for so many other disabilities, too. As an autism parent, I found myself looking for an adult that my son would “grow up to be…” someone who went to college or lived independently. I soon realized that autism, like so many other disorders, has such a broad spectrum. There is no one person that my son will grow to be other than HE! I want the same for my autistic son as I want for my other 3 children– happiness and pride in who they are as people. Everything else is just icing on the cake.
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I was born with a heart defect and I know what your talking about when people call those who have disabilities there hero… I have been called an Angel and that is a sweet compliment but a very high standard to live by. I love your imput on being a parent of a disabled child. The one thing I wanted when I was younger was to be treated like any other kid to not be treated different because of my disability. Now that I am older I know I am different from other people and I’m okay with it.
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Lizzy: I have a heart defect too! I didn’t find out about mine until my daughters were born and I nearly died, but I have left ventricle noncompaction syndrome.
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wow I am so glad that your alive right now ! I’m thankful that you found out about your heart defect to so your aware of it now. I have conjusted heart disease. So I hope I can still have children with this
disease. So did you need surgery to help your heart defect?
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Lizzie: I haven’t had surgery for my heart. For now, medicines keep my function in a low-normal range, but if there comes a time that the meds no longer work for me, it’s possible I could get a device implanted, like a defibrillator or something. I’ve also been told that I can’t have any more babies, because any future pregnancy would be life threatening.
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I am thankful tha medicine is helping you with your heart. I am sorry that you can’t have any more babies. But Im thankful you were able to have two babies. Have a Great Day! I’m allergic to meds that help my heart so I’m helping my heart through my diet and exercise.
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I was born disabled and I have not known anything different. When I was younger I wanted to be treated like any other kid. Then as I got older I realized that I’m different from other people and that is okay with me, , I have been called an Angel and that is a high standard to live by. thanks for sharing your blog with me!
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Your post is thought provoking and spot on! I created a program of arts education for people with special needs and always say I’ve learned more from people who society tells us are “different” than I’ve ever learned from anyone who’s normal. Normal is a dryer setting! I look forward to your posts! If you have a chance, check out my blog: http://dreamingwithyourfeet.com.
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Yes, absolutely a difference between inspiration and role modeling! To me, there is also a crucial difference on who is talking and who is listening. I often find the troublesome inspiration to be using the person with the disability without permission or consideration, whether it is a positive or negative effort. True, inspiring role models are so (to me, at least), because they are speaking for themselves, about themselves. Glad I found your blog after that post. It was an excellent one. :)
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Great insight, jisun– the difference is that “inspiration” porn seems to so often be attempting to speak for or on behalf or about people with disabilities, whereas finding role models is about finding people to whom we can listen and learn from. The difference is agency, it seems.
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Yes, difference in agency, exactly. :)
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