By: Dr. Richard L. Bruno, Ph.D.
Last October, I wrenched my shoulder getting my chair out of the car. Man, did it hurt! I could hardly transfer. Each time I did something strenuous the pain inched up a notch. Soon, my shoulder was too painful to do ramps or push on a rug. Ultimately, I could hardly push at all. Did I go to a doctor? No way! I didn't need no stinkin' doctor! I just kept on keeping on. I had places to go and things to do, do, do!
Then I read a magazine story about doctors with disabilities. One of the doctors interviewed struck a "cord" when she summarized her philosophy about having a disability with this statement: "It only matters what you do."
It only matters what you do? She was describing me, wasn't she? By ignoring my painful shoulder, I was acting as if "doing" is the right way--maybe the only way--to deal with a disability. Do other people with disabilities just ignore what they feel and keep on "doing?" When you look around, it sure seems that way.
There's a lot of information about how North America's most experienced group of crips — the 1.8 million survivors of the polio epidemics of over 40 years ago — deal with disability. Polio survivors work more hours of overtime and are more Type A — that is, hard-driven, pressured, time-conscious, perfectionistic and overachievingÑthan any other group with or without disabilities. Polio survivors, regardless of the severity of their disability are often the leaders, movers and shakers of our communities.
What's wrong with being a hard driving, Type A community leader in a wheelchair? Dr. Nancy Frick, polio survivor and Executive Director of Harvest Center in Hackensack, New Jersey, says that Type A behavior is literally burning polio survivors out. "Our surveys show that the more Type A polio survivors are, the more likely it is they will have Post-Polio Sequelae — late-onset fatigue, weakness, muscle and joint painÑand the more severe their new symptoms will be."
What's worse, being Type A prevents polio survivors from getting treatment for their PPS. Even though polio survivors realize that burning the candle at both ends is causing pain and loss of function, they just can't slow down. Polio survivors will ignore even excruciating pain for years to avoid "wasting time" by going to the doctor. So for many polio survivors, pain doesn't matter. All that matters is what they "do."
But it isn't just polio survivors whose super Type A behavior gets in the way of dealing with their pain. In one study, 40 percent of patients who had chronic back pain were discharged from treatment or quit therapy on their own because they were "just too busy" to feel better. Again, the more Type A the pain patients, the less willing they were to stop "doing" and start managing their pain.
Why would people push themselves beyond their physical limits, experience constant pain, and even permanently damage their bodies to just keep doing? Among those of us with disabilities, "doing" may be how we prove to the world that we're as good as or even better than non-disabled people.
A lifetime of physical excess is described by polio survivor Dave Graham. Graham is a full-time commission salesman and organist for two professional baseball teams in his spare time. "From my earliest recollections, I was competing to be as good as or better than able bodied people around me, says Graham. I pitched softball for many years. Although my left arm and leg were atrophied, my right arm was huge. Everybody told me how great I was because my handicap didn't hold me back. I reaped the praise and did almost everything with a vengeance. Unfortunately, this behavior has shortened my span of physical productiveness. Now I hurt 24 hours a day."
"Jack," a disability rights activist, wheelchair athlete and T10 para, is proud to be an aggressive overachiever: "Some say disabled people have to overachieve just to 'break even' and be as good as ABs. I overachieve so that the ABs know I am better than they are! When an AB discriminates against me, dismisses me with a pat on the head, I think to myself, 'Go ahead, jerk. Did you graduate first in your college class? Have you been on TV? Have you met the Prime Minister?'
There may be yet another explanation for Type A SuperCrip behaviour: denial. If you can't be accepted by society with your disability, why not just deny it? Says Rick Korejwo, a writer with multiple sclerosis, that's just what SuperCrips do. "People who push hard against the reality of their disability and refuse to give it any quarter are perhaps physically overdoing as a means of denial."
Writer and power wheelchair-user Jesse Kaysen thinks this sort of denial may be gender-driven. "Men may be especially prone to physical denial of disability because of the pressure of machismo in our culture. What's worse, it's the adventurous, headlong, 'macho' kind of guys who tend toward fast cars, hang gliding and other good opportunities to break their necks in the first place.
"Men born with a disability or who are disabled early in life," continues Kaysen, "are also prone to physically overdoing to prove that they're 'real men' in this society where manhood is equated with physical ability."
This notion is supported by Dr. Frick's findings that the more physically disabled and the younger survivors were when they had polio, the more Type A they are as adults. So there seems to be a relationship between being disabled at a young age and becoming a Type A SuperCrip later in life.
The need to demonstrate physical prowess to distract from one's disability may in part explain the appeal of wheelchair sports. No man is more accepted or revered in our society than The Athlete. The Athlete knows that there is no gain without pain, lives to "feel the burn" and is conditioned to play even when hurt. After all, a "real man" doesn't give in to pain.
Athletic trainer Carrie Ann Lucas, who also has a physical disability, warns that the majority of injuries to wheelchair athletes, and to wheelchair users in general, result from overuse. "Overuse injuries to the hands, arms and shoulders,Ó she says, Òoccur when athletes train too hard or return to training or competition after an injury even though they are still in pain."
Lucas says that for each day an athlete ignores pain, two days are added to the time it takes to actually recover. "And it's frightening," she adds, "that a third of wheelchair athletes don't seek treatment when they get hurt."
All of this Type A behavior in athletes raises a question: Are competitors acting solely out of an interest in sport or a compulsion to prove, at any cost, that they're not really disabled?
Many Type A wheelchair users may be willing to pay the price of physical pain and loss of function to make themselves and the non-disabled people around them forget that they're disabled. This sounds more like a bargain with the devil than an appropriate means of dealing with a disability. But there are those who endorse the Type A SuperCrip lifestyle. Charles and Linda Gray, an occupational and a physical therapist, respectively, are polio survivors. They agree that Type A people may tend to wear out quicker. "But," they say, "it's the quality of life that matters. We feel we have lived life to the fullest."
Words of conciliation come from Laura, who uses both manual and power wheelchairs: "I think being Type A is more multidimensional than it may appear. People become Type A for many reasons. For some it is overcompensation. Others push their bodies and minds in the context of fully accepting, even loving, themselves and their disabilities. Being Type A is just a path they choose to follow."
Laura frames the question we all must answer: Is being Type A really a path we choose or are we on automatic pilot, overusing and abusing our bodies so that we don't have to face the emotional and physical realities of our disabilities?
All arguments aside, common sense tells us that we do on auto pilot to blunt the emotional pain of having a disability probably isn't good, whether it's drugs, booze or an addiction to "doing." Ignoring constant physical pain and even damaging our bodies is no way to love ourselves or our disabilities...
Last week I took an hour out of my Type A day and started physical therapy. I felt nervous, a little scared, actually--wasting time that I could have used to do something productive. But you know what? My shoulder hurts less and I actually feel less disabled because I can push myself down the hall without screaming.
I know that what I "do" should arise from my thoughts and feelings, not serve to bury them. But I know too that itÕs frightening to slow down, ask for help and risk feeling or God forbid looking more disabled. But it's my body and I am responsible for how it feels and what happens to it, today and long into the future. Maybe seeing "Superman" himself "flying" around in a power chair will remind me that he, and we all, are "super" because of who we are, not because of what we "do."
If you answer "yes" to more than four questions you are Type A and probably don't stop doing long enough to take care of your body or to treat your pain: