My husband is disabled. Most of you who know me are aware of this. He has Spinal Muscular Atrophy,, he was born with it, but it didn't get really bad until his teens. He's lucky, actually--most people who have 'type III' as his is called are in wheelchairs by his age. He can still walk. He's also lucky because it doesn't hurt. At least not physically.
His disability is as much a part of our lives as our son. It doesn't define him, but it limits him. He can't climb stairs, at least not unless they are few and very short and then it still takes so much effort it's rarely worth it. He can't get up easily if he sits or lies down. He can't run; he can't walk for more than twenty minutes. He can't lift or carry things over a few pounds. Going up inclines is difficult. If he loses his balance he will fall--it's impossible for him to catch himself since he has no muscle strength with which to do it. He falls more often when he's tired. There are many strict and unassailable boundaries to his world.
These limitations have become mine. I walk more slowly, even when I'm not with him. I look inside places we haven't been before to make sure he can navigate them. I make sure the buildings don't have stairs. We don't go to parks unless there's a concrete path. We don't go swimming together because most pools don't have a disabled entry to the water. If we go to the beach he stays in the car.
He spends a lot of time in the car. His life is a series of missed moments, things I have done with Javier or on my own because he is simply physically incapable of doing them. He stays in the car or stands at the sidelines, waiting for us. He is always waiting.
He has never been able to pick up our son.
It took me a full year of our relationship to really understand what his disability meant. It's not the obvious things--the stairs, the danger of falling--but the day-to-day inconveniences that people who are fully-abled can barely conceive of unless they witness them: disabled elevators on the farthest end of a building with things stored in front of them; three steps to get into a building, four to get to the washroom; cramped hotel rooms that mean tripping hazards; long walks between terminals at airports; heavy shopping carts; friendly dogs off leashes; things stored below waist-height; no empty disabled parking spots; out-of-service elevators. There are more. So many more that it would be impossible to write them all. It's impossible to even remember them all, but they are constant and everywhere.
And I, slowly, inexorably, have been drawn into his limitations. I am always waiting too--for elevators, for the courtesy carts at airports, for everyone else to exit first, to find a place where he can sit down, for him to catch up to me. I hug him gently, never push past him, carry almost everything, go first to make sure he can follow, pick things up off the floor.
He hates to ask for help, so I have become his help, his advocate, his defense. I clear the way, help lift him, tell the staff about his limitations, reprimand people who aren't willing to understand. He hates to put people out, or to seem different. I make sure he gets help anyway, even if it makes him angry.
I think he believes sometimes that I find him a burden.
I don't. His disability is a burden; he isn't. I hate his SMA, what it's done to him, what it's done to me, what it will do to our son. Javier already pretends to 'walk like daddy'; he knows daddy can't go to the park with him, that daddy never lifts him up. Mommy always metes out discipline. Right now he doesn't care. I worry that one day he might. I know that Dom hates that he can't be the kind of father all our neighbors are--throwing baseballs or playing soccer, teaching their children to climb on the monkey bars or ride bicycles, pushing them on the swings. He is everything else a father should be: present, attentive, gentle and loving. Javier loves spending time alone with him, loves sitting in his lap and having conversations. His daddy is as big a person in his life as I am. But physically I am mother and father both, and I don't know enough and I'm not strong enough and sometimes I fear that I can't do it.
I hate how oblivious so many normal people are. I have even wished on occasion that Dom was in a wheelchair, because that at least would make his needs obvious. That way, at least people would know to walk more slowly, to point out the elevator, to not push, to wait. Our cities were built by the able-bodied for the able-bodied. When you live with someone disabled it's obvious how much they were an afterthought, how little they were thought of at all. The message is subtle, but pervasive: There is no place for you.
I have heard disabled people refer to themselves as 'differently abled'. I used to agree with that idea, but I don't anymore. Being disabled means you are limited in where you can go, in what you can do. There is almost no spontaneity, not much that is as effortless as it is for the able-bodied. You have to plan more, notice more, think more about things that others take for granted or don't think about at all. There is no place for you, so you have to ask, or beg, or force them to make one.
My husband is disabled.