You Can’t Understand Until You Climb Into His Skin And Walk (Wheel?) Around In It

I saw this picture on the Postsecret website a few weeks ago.

I very rarely take things personally, but this post hit home and I decided I had to respond.

You see, I am a “handicapped child.”

In 1987 I was born with a rare form of muscular dystrophy known as Rigid Spine Syndrome (or as I like to call it: “Hipster Syndrome” because you’ve probably never heard of it). Basically what this disease means is that my muscles are crazy weak. I’ve never been able to do a lot of things like: run, jump, climb, lift anything heavier than 5lbs, or beat anyone over the age of 2 in arm wrestling. I was able to walk (albeit slowly and with a waddle) for most of my life, but now I’ve been using a wheelchair full time for the past 7 years. I can’t drive, I need help with things like showering, getting certain clothes on, using the restroom if I’m not at home and I will never be able to live completely independently. Not only are my muscles weak, but a lot of them are extremely tight. My neck, shoulders, and elbows all have contractures so they are contorted at weird angles – it’s a hot look. I also have scoliosis (curving of the spine) and have had three major spinal fusions at ages 3, 6 and 18, to fuse my entire spine and prevent future curving. I don’t have great lungs either. I have to wear a bi-pap to help me breathe when I go to sleep (again, another hot look), I can only hold my breath for like eight seconds and even a mild respiratory illness could kill me.

Now, I know that parents want the absolute best for their kids, so I can understand why having a “handicapped child” wouldn’t be the ideal situation. It isn’t easy knowing your child will never be able to do things that so many others take for granted. It isn’t easy to watch your child struggle. I know it’s been hard on my parents to watch me go through numerous surgeries, injuries, and other difficulties related to my disability. No parent ever wants their child to suffer.

But here’s the thing: I’m not suffering. In fact I’m pretty sure being a diehard Cubs fan has caused me way more pain and sorrow than my disability ever has. Obviously my life has its challenges, but whose doesn’t?

Extreme poverty. Homelessness. Emotional/Physical/Sexual abuse. Abandonment. Loneliness. Drug Addiction. Losing a child. Losing a loved one.

These are just a few of the things that I imagine must be much harder to experience than not being able to walk. If being in a wheelchair is the hardest thing I’ll ever have to face, I can’t complain.

Honestly, I have a pretty amazing life, and in the grand scheme of things, I got really, really, lucky. For starters, I have the two most amazing parents in the entire world. I can’t even begin to tell you how much they mean to me. To have not only one, but two parents as great as mine almost seems unfair and not a day goes by where I’m not grateful to be their daughter. I also have the coolest younger brother and younger sister in the world. Seriously. They mean everything to me, and they make every day better. I’ve also got an extended family (on both sides) full of awesome people who I love very much. Especially my grandparents – even though my dad’s dad is a White Sox fan, haha.

And as crazy as it might sound, if I had the chance to go back in time and be born “normal,” I don’t think I would. In a lot of ways, living with a disability has been a blessing in disguise. It has made me more appreciative of the things I can do and what I do have. It has made me realize what’s truly important, and that things like giving, laughing, and loving are what make life worth living – not whether I can run or not. It has given me a different perspective on life, and for that I am thankful. I don’t have everything figured out, but I’d like to think I have a pretty good head on my shoulders- and I’ve got to say that this is pretty helpful when you have a muscular system that’s a piece of crap.

So while my disability has helped shaped who I am, it does not define who I am.

I am not the sum of my physical inabilities anymore than someone is the sum of their physical abilities.

I cannot walk, but I can make people smile and laugh.

I cannot jump, but I can be a friend.

I cannot run, but I can be a good daughter.

I cannot play basketball with my brother, or help my sister with her dance routine, but I can be their biggest and proudest supporter in the stands

My life is not meaningless. My existence is not inferior. I have value.

So, please, don’t write my life off as this big unbearable ball of suckiness. Sure, every once and awhile it can be a bummer, but I am genuinely happy with my life. I like who I am, and I’m grateful I was born – disability and all.

“Part of the problem with the word disabilities is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.” -Fred Rogers

I’d also just like to say that this post isn’t addressing abortion, and I’m not trying to condemn or shame anyone by any means. This is about attitude toward disabilities, and as someone with a disability, I just wanted to give my perspective. People with disabilities don’t need pity and we aren’t less-than. And if I can convince even one person of that, then that is beyond awesome, so please, feel free to share this.

You can read more from Arienne Jacobson on her blog.