When I was small–in the 1960s and 70s–most kids with disabilities either didn’t go to school or were warehoused in separate (read: segregated) institutions. My parents didn’t want either of those options for me.
I was born with a form of spinal muscular atrophy, a genetic neuromuscular weakness. I never walked or stood. But other than knowing intellectually that I was “handicapped,” as we used to say, I always considered myself Normal. After all, having a disability was normal for me. It’s all I ever knew.
Still, the schools didn’t feel that way. My parents had to fight to get me into a regular school. Discrimination against disabled folks was legal in those days.
By insisting that I be integrated in regular schools, my parents ensured not only my education but my socialization. It wasn’t always easy, but for the most part other kids were friendly. My teachers helped; in first grade, my teacher actually gathered the class in a circle and invited the other kids to touch my wheelchair so it wouldn’t be scary. I didn’t mind.
There were a few kids who were problems. Threats were lodged, but no physical harm came to me (at least not intentionally). In those difficult situations, I learned to be a “tough guy” like my heroes on TV. I would never act scared. And in at least one case, I took advantage by falsely accusing another child of doing something naughty that I had done. When he protested, I simply lied, “I couldn’t have done it.”
In high school, to hang out with cool kids, I had to trust them to push my wheelchair. The first time I actually went off campus with a friend to smoke a cigarette, I remember feeling so proud that, that evening, I actually boasted about it to my mother!
Let’s give credit where it’s due. My social life was greatly aided by some terrific attendants. Sometimes schedules had to be juggled, and I was never as free as I wanted to be. But what teenager is?
With the aid of my aides, I went on a few dates with girls. But nothing ever really developed until I was in college, living in a dorm, with a live-in attendant. I felt I knew pretty well how to put people at ease about my disability by then. I thought I was pretty seductive, too.
Perhaps the hardest part came later. Once I was in a relationship, I struggled to protect my girlfriend from being burdened by my disability. I insisted so hard, in fact, that she got a little miffed. She wanted to do things for me. Plus, once we moved in together, having a paid attendant around all the time became an unbearable invasion of privacy.
To this day–after 23 years of marriage–my wife and I struggle to find the right attendant mix. Sometimes I hire extra help, other times less. But through this struggle, we’ve become closer than many other couples we know. We share all our secrets.
And to our kids, we’re just mom and dad. We may not be the typical mom and dad, but these days, who’s to say what’s typical?
Guest blogger Ben Mattlin is the author of “Miracle Boy Grows Up,” available for pre-order from Amazon and Barnes and Noble.