—Laura Remson Mitchell
(This article first appeared in the premier issue of The MS Beat, in February 1997.)
I hate SuperCrip stories!
I realized that shortly after my MS was diagnosed in 1978, as I sat reading a book about this mysterious disease that now seemed to dominate my life. For the most part, the book was an invaluable source of important information and reassurance. But every time it described someone with severe MS symptoms who was doing remarkable things, I found myself feeling depressed and worthless. That certainly wasn't what the author intended. These stories were supposed to be encouraging! What was going on?
I felt inadequate and overwhelmed, terrified not only by the uncertain future of my MS but also by the idea that because I had MS, I now had to do more, to be more, to achieve more. The message I got from those "inspiring" stories was that I not only had to cope with my MS; I now had to live up to somebody else's unreasonable expectations!
For a long time, I thought it was just me. After all, as many people have pointed out, nobody can make you feel guilty (or inadequate, or ashamed) without your cooperation. But after living with MS for many years, including 10 years as an MS peer counselor, I know that others have reacted the same way I did. Finally, I think I understand, and I'm more convinced than ever that those "inspirational" stories generally do more harm than good.
I'm not saying that there aren't extraordinary people with MS or that those people don't deserve our recognition and admiration. Outstanding people with MS, like outstanding people without MS, can be important and valuable role models.
But what I want — what I think most of us want — is to be accepted for who I am and what I am. And that includes the fact that I have MS, that I sometimes may need a little extra help, a mobility aid or a job accommodation. I have the same right to a full life as anyone without MS, and I shouldn't have to be a superhero in order to exercise that right.
Interestingly, though, before others can accept us for who we are, we first have to accept ourselves. For people who warm themselves in a cozy blanket of denial, that may not be possible, because accepting ourselves means accepting the fact that at least for the foreseeable future, MS will continue to be a part of our lives. That leaves us with an important choice: We can sit around grieving for or dreaming about a life without MS, or else we can insist on living a good life with MS now, today, just as we are.
That's where the SuperCrip, inspirational stories come back into the picture. All too often, such stories leave the impression that only some kind of superhero could possibly live a meaningful life with MS, or with any serious disabling condition. That is a very destructive message, and it's simply not true!
You don't have to be a superhero to live well with MS. But you do have to know who you are. You do have to insist on being treated as a whole and valued person, not just an extension of your disability. You do have to find new ways of accomplishing your goals when the old ways no longer work. And you do have to be ready to fight, if necessary, to get what you need, to break down the social and physical barriers that society sometimes puts in our way. (That's really what the disability rights/independent living movement is all about.)
The world is out there for all of us, not just for nondisabled people and a few superheroes. We don't need "inspirational" stories to encourage or reassure us. The kind of encouragement we need comes when we realize that MS or no MS, we still have power over the kind of life we live and, especially, when we begin to exercise that power.
Copyright 1996 by Laura Remson Mitchell
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