It is New Year’s Day, and I am reflecting on a beautiful vacation day spent with Ev. We didn’t really do any thing special except run some errands, look at bathroom tile for the condo, and pick up coffee and fish at our favorite St. Paul locales for both. We ate Thai leftovers for dinner from our favorite Thai restaurant (now with a second location just blocks from us). We finished the day off watching Benjamin Button, a slow and undulating film that we had not seen since we watched it in New Orleans the year of its release. Like I said, the day was nothing special, except that today represents what I would take more than anything else. It seemed so normal–hard to attain, and almost impossible to maintain–and when we get such normalcy for whatever reason, life seems just right.
Just right is a social construct, and this year it is my new year’s resolution to remain just right as much as possible. This will require great energy. This year, I know that while I handle new physical impairments, I will need to pay more attention to the social meanings of disability so that just about everyone I know, especially me, will have to figure out what is impairment and what is disabling. Thus far, I have managed to manage. I have taken the physical and emotional challenges thrown my way and with the support and encouragement of a lot of knowledgeable people, found ways around them. For example, I now drive a ROLLX van with a retractable ramp. Why? So that I can get my power wheelchair into the van to take me places. Why? ALS has caused my leg muscles to atrophy so much that I cannot walk. A power wheelchair and a van are two of the tools I use to continue to be a part of a greater community.
As I reread the above paragraph, I am struck by how matter of fact it sounds. I write stuff like this now as if I have always had ALS, and that it is the most normal thing in the world. And if I could approach it as only a medical issue, to be managed with a medical response, I suppose this would be all right. But it isn’t possible to live with disability without experiencing its broader social implications, and this is where a day that is just right, is just not that easy. There is more to dis ease than a medical condition. There is the social experience.
Bradley Areheart, in a 2008 legal brief about the Americans With Disabilities Act (ADA), contrasts the meaning of disability defined by the traditional medical model with the social meaning of disability. He states,
“… being “disabled” depends upon deviation from society’s construction of corporeal normality. Moreover, the experience of being a disabled person consists largely of encounters with the many barriers erected by society-physical, institutional, and attitudinal-that inhibit full participation in mainstream life. One upshot of the social model is that the experience of disability is not inherent or inevitable given a particular medical condition; rather, it depends upon the particular social context in which one lives and functions.”
In other words, physical impairment is only one part of the disability experience. There are social attitudes that can be just as disabling as the actual impairment. What I have come to learn is that the fullest extent of my own disability is only realized by the social assumptions of what it means to be disabled. I have sought to deal with this phenomenon by being somewhat transparent about my dis ease journey, letting you in on the processes I’ve used to negotiate my medical impairments. In that process, I have also shared my initial forays into the social world of disability. My negotiation of this world has led me to understand the difference between impairment—the medical condition, and disability—the social condition inspired by those impairments.
We all know that there are social implications to disability. For example, if we were to plan a building in the year 2012, and we were to say that the only toilets available would be urinals, I just cannot believe that questions would not be raised. Or if we were to say that all door handles and openers would only be reachable by people who can reach six foot six inches, we would say that doesn’t seem right. In both cases, we have met the requirement that there be doors and restrooms, but we have little trouble using the same logic for people with disability. If there is not an automatic opener on a door so a person using a wheelchair can easily use it, we can still say the bathroom is handicapped accessible. If we approach job responsibilities so that there is only one, able bodied way to do them, then we can say that a person with disability cannot work.
And mainstream media furthers the social construct of disability. In the book, No Pity by Joseph Shapiro (where I first learned about the TAB moniker by the way), it is pointed out that portrayals of disability in the media are usually one of two types—the horribly pitiable, crippled person who could not possibly want to live in such an awful condition, or the Super Cripple who can do anything despite the disability. I have written about the horribly pitiable in my response to Dudley Clendinen’s New York Times article about why he wants to kill himself. The idea that anyone with a severe disability would want to live with it can be difficult for an unaware TAB community to comprehend. On the other hand, look at the portrayal of the Super Crip? You know, the guy who can only wiggle his thumbs but still manages to strap on a pair of skis, drop out of a helicopter and outrun an avalanche off the top of a mountain. Oh there are other portrayals as well. On the website disabilitymovies.com, the following list of movie clichés is offered:
• The disabled person dies immediately after imparting a life lesson, inspiring the able-bodied to live their lives to the fullest.
• The disabled person offs themselves so they won’t be a burden to others.
• Blind people have superhuman hearing and can use echolocation.
• The disabled person was really faking it all along!
• Disability, especially disfigurement, is used to indicate that a character is the villain.
• The disabled person needs able-bodied people to teach them that their life isn’t over.
• People with disabilities can cure themselves through sheer force of will. If you’re still disabled after the movie ends, it means you’re not trying hard enough.
I know that offering up these observations may seem a little cynical or even raw and whiny. I speak all of this with love. This past week, I have watched my darling wife confront two different able-bodied people parked in the van accessible spot on a day we sought normalcy, because they don’t see the need for such a space, except as a convenience—short term parking–for them. These are the only spaces in which I can get my wheelchair in and out of the van, and I am sure that they aren’t thinking to themselves, “I am going to park here so I can deny a person who actually needs this spot access to this store.” It is just a blessed lack of awareness.
The greatest gift I can think of in the course of this coming year is to live a “just right” life. I am not a super crip, even though I have gone skydiving. And as I contemplate the course of my dis ease, any despair that I feel about it strikes me as normal and probably more appropriate for counseling or time spent with friends, than assisted suicide. I want to be a good husband, a good father and father-in-law, a good employee, and a good citizen for my community. I want to be a person that invites others to better spaces in their own lives. I want to be a good friend.
And in the end, my new year’s resolution, to be just right, is a social construct of good intentions and social deconstruction. Normal is different after a year of dis ease as the norm, but just right is nothing more than a good day in the life. Happy Just Right New Year everyone!
1. Areheart, B.A. (2008). When disability isnt’ “just right”: The entrenchment of the medical model of disability and the Goldilocks dilemma. Indiana Law Journal, Winter, 2008, pp. 181 – 231.