Barrier-Free Me

by Dean Kramer
September, 2006

July, 2006 marked the 16th birthday of the Americans with Disabilities Act (ADA), which was intended, ultimately, to guarantee disabled Americans fuller participation in the many areas of civic and social life from which we’d been excluded by barriers, both architectural and conceptual. And legal recourse for the removal of such barriers has, indeed, granted many of us access to experiences we might never, otherwise, have had.

Yet, some of the barriers that hold us back are not amenable to legal intervention, but are the internalized ideas each of us has about what she can and can’t achieve. Added to those are our ideas about what “participation” means.

If, as I did, you derive your identity from your physical status, MS forces you to constantly readjust your sense of self because the symptoms vary so widely in type and intensity from day to day. Good days and bad days, we each have our share. Even the words “good” and “bad” begin to slide around. I have secondary/progressive MS and a day that was “bad” during the relapsing/remitting stage is now one of my better ones.

I try to stay optimistic, taking recommended treatments, doing my exercises, and watching what I eat. Because participation is important to me, I have also pushed myself to learn to use all of the mobility options that can extend my continued presence in the ongoing world. I try to “get out there” whether on foot with a cane or a walker, or seated with a wheelchair or scooter.

But MS kicks my butt, too. At times, my energy gets low, I can’t do as much as I’d like and I become a bit downhearted. That’s when my brain begins whining and telling me all sorts of unpleasant, unhelpful things about myself. That’s also when my mouth gets me in trouble. On a day when I may not be able to walk, a day when I have no energy to actually do anything, my mouth is still capable of annoying those around me—maybe even more capable.

Let’s suppose, for instance, that Twink and a friend are moving a heavy piece of furniture. I can’t get in there and help lift it, but I can certainly tell them exactly how it should be done. Never mind that they know how to move it. Never mind that they didn’t ask for my advice or that stopping to listen to me takes their energy.

“Move the end to the left!” I yell, happily participating away. “No, no! Not that end, the other end.” There follows a crash as the wrong end hits the doorjamb. They put the credenza down and look at me in irritation. Unabashed, I mutter, “I told you to move the other end.”

If she is feeling patient, Twink will say something like, “Dean, if you want to be helpful, why don’t you use your scooter to move those empty boxes?” If she’s feeling less patient, she may simply snap at me to leave them to it. In the first case I feel patronized, in the second, rejected. I wanted to be with them, doing what they were doing. What does the ADA say to that, huh?

Here’s another example: I ask someone, usually Twink, to help me with something that is beyond my present physical ability. Often, but not always, it’s something I enjoyed doing. Maybe I even prided myself on being able to do it.

As Twink begins to help me I say, “No, don’t do that first. First you have to do this.” And I point to the part she "has" to do first. Twink may roll her eyes to the heavens but she graciously does as I’ve asked. However, after a few more such comments she no longer wants to help me at all. And why should she?

If she’s feeling patient she’ll say, “If you want my help try not to boss me around.” If she’s not she’ll say, “Get someone else to help you. I’ve had it!”

Perhaps I want people to take my suggestions or to do things exactly the way I used to so that I can feel, vicariously, as if I’m still doing things. What I’m really doing in both cases, though, is trying to escape my whining, self-denigrating brain. In the process, I create misery for those around me (usually Twink) instead of coming to terms with that misery, myself. The ADA can’t help with that.

Last month I wrote about the need to keep on with my physical wellness program no matter how I’m feeling. I wrote that having a positive attitude can actually add to a feeling of well being. Equally important, though, is to recognize and come to terms with the truth of loss and diminished capacity that significant disability engenders.

How do I define myself? I have to dig deep sometimes to find the good in being Dean-with-disability. Without dwelling or wallowing, I have to admit some truths. Having MS is not fun. It hurts sometimes. I’m sad sometimes. I get frustrated with my body more often than I’ve been willing to admit. I’ve taken that frustration out on others, micromanaging with my mouth what I can’t control with my muscles.

I’ve has MS for 22 years and I’m only beginning to understand the deep ways in which it influences my attitude toward friends and loved ones. I’m now aware that how I treat others in situations such as those I’ve described above results from barriers within my mind. Such awareness will become part of my wellness program enabling me to slowly remove the barriers inside that keep me from fully participating in my own existence.

I’m grateful for the ADA. It has provided access to all sorts of activities that are a vital part of my physical life. As for my mental and spiritual life, the responsibility is mine. Whether or not, and how, I feel like a participant is up to me. MS isn’t an injury, where the disability is relatively static. It’s a progressive disease. I’ll have to be flexible and remain open to constant change. That makes MS a mental and spiritual challenge as well as a physical one. In an odd way, MS can be an interesting and compelling vehicle for self-improvement if you care to use it that way. If I choose, I can spend the rest of my life constructing a barrier-free spirit. To me, that seems pretty worthwhile.