What you want
Baby, I got
What you need
Do you know I got it?
All I’m askin’
Is for a little respect when you come home (just a little bit)
Hey baby (just a little bit) when you get home
(just a little bit) mister (just a little bit)
– Aretha Franklin, singing the Otis Redding 1965 song
You are disabled. Or, if not, pretty good chance you will be at some point in your hopefully very long life so you might as well keep on reading. Allow me to use disabled very broadly. As I mean it, it covers birth affects, trauma, disease that deforms, disease that destabilizes your systems, mental disorders including depression, and even psychic trauma like PTSD or the death of a close one. When that fateful day comes, first you crave normalcy. Then you tirelessly work to regain self-confidence. That ultimately gives you back your self-esteem. But stopping there is not enough because, like it or not, to retain self-esteem, you still have to constantly work at it. Alas, inevitably attrition sets in and self-esteem begins a relentless slide towards self-doubt. Yet self-esteem is vital; it is that elusive yet slippery elixir of a healthy and happy life. If you think self-esteem is elusive, respect is much rarer. But it is respect that is the ultimate holy grail of someone disabled. I have learned that it is respect and respect alone that is the antidote to letting slip of ones’s esteem. And so, how does respect occur for the disabled? It is not easy. Stay with me dear reader.
At age 16, after an above-knee amputation for osteosarcoma in my right leg, I found myself joining the ranks of the suddenly disabled. I was whacked again at age 19 when the cancer spread to my lung and I had to have 2/5 of my lungs removed. I desperately wanted to get back to normal as quickly as possible. This is pretty, well, normal. For the newly disabled, normalcy is a powerful but elusive dream. It is like grabbing for the Crisco-covered watermelon in the pool games I played at summer camp. You can see the watermelon. You can just barely touch it. But then, as soon as you grab hold of it, it squirts away and you have to chase after it all over again. Truth is, you will never be normal because you will never be the same again because whatever has just happened to you fundamentally changed you. The desire to “be normal” is especially important to the child or teenage disabled. Being part of the group and able to do what the rest of the kids are doing is vital to feeling accepted, feeling part of the group, feeling good about one’s self. And that, frankly, has nothing to do with being disabled, just with been a teenager.
The reason normal is such an important goal is that any difference between us and our fellow humans creates the perception of an imbalance. This, as an aside, is the real point of prosthetics—to level the playing field of interpersonal dynamics so the disabled individual can focus on the normalcy of social interactions without worrying about the “rhinoceros in the room” of a missing body part. Prosthetics, however, are only a help for a small class of the disabled—those missing a limb.
In my case, normal was violently ripped away from me. With some people, normal is something they are born “outside of.” That is an important distinction because when the change happens later in life, it can make the adjustment harder; it seems like you lost something you had before. But in the end, in terms of how society treats you and makes you feel, it’s the same. You are simply not normal; and that may not just be because of the distance created by others who interact with you. Jane Smith wrote in Trying to be Normal, “The most difficult part of being disabled is coming to terms with the negative values I have internalized. I am disabled and I am trying to work through my prejudices about my own disability and others. My gut reaction was to deny that I had these feelings, but denial does not allow me to come to terms with my devaluing prejudices.”
I believe, in the end, this discussion about being normal is really about ability versus disability. “Perhaps there is too much emphasis on disability rather than ability. . . . How many people actually know what their abilities are?” asks Jane Smith. This is a great question. I believe people faced with a disability or some kind of disadvantage—think of the sightless person whose sense of hearing magnifies—test their abilities more than others and push past what seems like limitations.
When you are disabled and start to fight back, your goal changes from striving to be normal to striving to be better, at least in one small slice of life. What is really going on, of course, is that you are seeking to regain your self-esteem which first requires a rebuilding of your self-confidence.
Fighting back starts by finding something you can do. It doesn’t matter what it is. It could be checkers; it could be a sport; it could be an intellectual pursuit. When disabled you will be highly motivated and will pour everything you have into that “something” you find. You will focus; you will work hard; you will put everything into excelling, and suddenly you find you are going beyond your able-bodied counterparts. Once I excelled beyond what two-leggers could do in one area, I wanted to push the limits in other areas. Why? Mostly because someone said, “I bet you can’t do that.” Whenever I heard that, I responded big time.
“Don’t let anyone tell you that we just want to be ‘normal’ like everyone else. We have to be better than everyone else just to break even . . . and that may not be enough.” wrote, Lauro Halstead when speaking for the Polio victims he had been studying. I believe when you are knocked down hard by life, either you cave and become a victim, or you totally compensate—perhaps even overcompensate—and come out better, stronger, happier.
The compensation against some sort of physical disability carries over to other aspects of life. Doctors knew this and documented it with polio survivors. Most polio survivors developed a “special relation to their bodies unknown to able-bodied persons. They experienced a new mastery over their muscles and movements, an element of control . . . that carried over into other aspects of their lives and probably accounts for why so many . . . excelled at school and work” wrote Lauro Halstead in “Post-Polio Syndrome” in the April 1998 Scientific American.
First there is self-confidence without which there is no passing Go. But just past self-confidence and “a trust in one’s abilities, qualities and judgment” is self-esteem which is “confidence in one’s own worth.”
Initially, sports were the key to my regaining self-esteem. Downhill skiing, waterskiing, rafting, crutch hiking, open water swimming were all things I got serious about and focused on. In some cases I had to adapt to only having one leg and one lung. But starting to excel at sports gave me satisfaction; they fed my love of speed and excitement; and most importantly they allowed me to attain the status of “not considering” as in “you skil well…considering you only have one leg.” I had set out to prove something to myself. To rise to the challenge. To test myself. To renew my frequently-challenged confidence. To feel good about myself. But along the way, people let me know how strongly they felt about what I had accomplished.
I got a big thrill out of people’s reactions to my physical and athletic accomplishments. I enjoyed seeing their reaction when I raced down the pool and executed a clean flip turn, spiked the volleyball over the net, or dropped into a steep ski chute. It is true that part of what I was doing was showing off. But it’s a very different kind of showing off from what I did as a kid. I was making a statement: “Hey, don’t think of me as disabled because maybe I can do some things you can’t or won’t.” When you have a disability you will have a strong desire to move people from their initial reaction of sympathy (which is way too close to pity) to one of respect.
That is the word we have been looking for: R-E-S-P-E-C-T
Gloria was right: there is nothing without self-esteem. But what’s the big deal? You get knocked down by life, focus on something you can get good at, work really hard at that until you are better than most, and you will build back up the confidence and self-worth to be healthy and happy right? Wrong. Because when you are disabled there are too many things day in and day out that keep challenging your hard fought feeling of self-worth. These come from, oh, being stared at, falling, being clumsy, finding things that used to be easy that are now very hard, or any other of the countless things that those who are not dealing with this level of life’s challenge have no idea about.
Dealing with the superficiality of the disability is important for self-confidence. Dealing with the anatomic, physical, structural, mechanical aspects of the disability is just as important for success. With these daily challenges to self-confidence and self-esteem, you, the disabled person, needs a constant outlet where you can excel, where you can overcompensate, where you can perhaps leave the temporarily able-bodied people in the dust.
So how do you get to a feeling of self-something that is able to withstand all these daily challenges? And what is that -something? As you know already, that something is RESPECT.
When I was challenged with “I bet an amputee can’t ride a bike from Boston to NYC” I proceeded to join the AIDS ride event that did just that. I got a bike and worked that single leg very hard building up to where I could make it up big hills and I could ride for miles and miles. On that first day of the ride I passed two-leggers on the big hills in Connecticut. And that first night in camp, dozens of people saw me crutch walking around camp and made comments. On the ride and there in camp, the energy from the other riders was affecting me in a way I had never anticipated. I was in awe of the friendliness of this group of strangers. They all had a purpose. They were willing to pay a price in sweat and pain to feel good about that purpose. And they had profound, yep, you guessed it, respect for my contribution to that purpose. Because they were riders, they knew how hard I had worked to get one leg ready for this. They knew I was going through more pain than they were. Perhaps in the course of a workout, they had tried one-legged riding. Even serious riders who try one-legged riding don’t sustain it for very long and would never try a hill that way. So they respected what I had just accomplished. The fact that I was inspiring these people was a totally new concept to me and it was just beginning to register. I still did not know quite what to make of it. It was not something I had anticipated or sought. The truth is, while the AIDS cause was a huge motivator, I was really doing this for me. When I thought about my personal motivations, I felt guilty. But the reactions from all these people made me realize I could realign my purpose.
This attitude I had developed—this super-aggressive drive to perform at a level higher than others—was a psychological adaptation on my part to overcompensate and prevent that dreaded pity reaction. It’s a natural defense mechanism, one born of a disabled person’s desire to combat their disability’s constant attacks on their self-confidence, self-image, and ultimately, self-esteem.
Suddenly there was something I was able to do that others would not or could not do. This was a wonderful and startling discovery: it wasn’t always going to be about me trying to match what “normal” people could do. I could find things where I could surpass others. This will be a dramatic turning point for you when you have a disability or a disadvantage: when you realize you can be not just good “considering,” not even just “good period,” but actually better than the average “able-bodied” or “able-minded” person, period!
The most gratifying moment in your recovery and rehabilitation when you are inflicted by a disability is when someone able-bodied says they cannot compete with you. Imagine that! It feels like you have arrived. The confidence it instills spreads throughout your personality and everything you do, giving you courage, fortitude, and happiness. This is the ultimate goal I wish for everyone faced with a disability, a personal crisis, or any life challenge. Fight back. Find a way to win even with something small. Find a small victory and build on it. Build and build to the point where you have found a place to excel beyond those who are not disabled. Suddenly you are there—back on a level playing field. Strong and happy.