“Is He Retarded?”: Living With and Overcoming My Disability

Now, after nearly a month writing on Medium, I have worked up the emotional fortitude and mental courage to write about the one thing in my life that’s most personal: my permanent physical disability.

You would think that, after 40 years of living with it, it would be a subject that would be easy for me to tackle but, to be brutally frank, it’s one of the hardest, most gut wrenching things to write about.

I have a form of mixed Cerebral Palsy. In layman’s terms, my brain was damaged before or during birth so that certain parts of my body don’t work as they normally should. Mostly, it’s my legs because my walking and balance are primarily affected (I cannot walk without the use of my crutches). Also, my range of motion is limited so even seemingly simple tasks like lifting my arms up to put on sweaters or jackets is difficult.

Long before disability rights were a movement, I endured going to a special education school for the disabled when I was very young. I was met with frightened stares, hushed whispers, and questions. Oh, lots of questions.

“What’s wrong with him?,” “Why does he walk funny?,” and my personal favorite, “Is he retarded?”. Suffice to say, it hurt. It cut deep. I developed a huge inferiority complex. I was introverted for a very long time, especially at home.

I remember watching the Jerry Lewis telethon every year as a kid and I’d be in tears alone in my room afterward. Bombarded by the pathetic stereotypes of helpless children on crutches barely able to stand. Or worse, forever confined to wheelchairs, robbed of the ability to speak, to move, or to feel much of anything at all.

For a long time, I was angry. Angry at myself for being so inadequate and even angry at God or the Cosmic Deity who inevitably made me this way. I acted out in school, got mediocre grades in junior high and high school, and struggled socially. I was painfully self-aware and extremely ashamed of myself. I even battled depression. I thought that, for a very long time, there must be something wrong with me to deserve such a terrible thing to happen like a permanent disability such as Cerebral Palsy.

Then, somehow, many years later, I just grew up and finally came to terms with it and accepted it. It’s not unlike when a rape victim has to make the difficult road to recovery after suffering unspeakable trauma and had to endure the loss of something precious — their innocence and faith in the goodness of the opposite sex and even their very dreams of the future. I felt violated too, but in a different way.

Two things are clear: First, I never asked for this. It happened anyway and a lot was taken from me. And, second, nothing has ever been easy for me.

In my early 40’s now, I can barely walk long distances. I’m in chronic pain, have regular muscle spasms, and have arthritis in my legs and joints. With each physical fall, I get up slower than I used to.

But, despite all that, I cling to the things that matter. My life, my family, my friends, my writing, and the woman I love. That is all I have and I do my best to live as fully and bravely as I can without regret or complaint.

I’ve developed other things such as my intelligence and my humor. I’ve acquired patience, empathy, understanding, humility, compassion, selflessness, and a certain fearlessness because of what I’ve experienced through my disability. And, when I look back on it, I’m very humbled and grateful to have endured it all.

My saving grace has been my writing. It’s the one constant that’s kept me going and helped me survive the storms. Honestly, I wouldn’t change a thing about my disability because it’s taught be so much and I would not be quite the same without it.

But please, don’t feel sorry for me. I’ve worked hard to get where I am today and I’m not going to give up trying to make a positive difference, no matter what!

I suppose my message to anyone is this: Humans are all flawed. We all have our shortcomings and disabilities. What separates yours from mine is that mine is easy to see. But, I’ve learned, my disability is part of who I am and I choose to accept it and live with it.

With that said, my disability DOES NOT DEFINE ME. It is my sincere hope that whatever hangups, shortcomings, or insecurities you may face that you learn to overcome them and NEVER let them “disable” YOU!

-RD