When actor Christopher Reeve sustained his spinal cord injury in a horse riding accident, he went immediately from Superman to Man in Wheelchair. In contrast, we polio survivors usually go through a lengthy, angst-ridden decision-making process before we plunk ourselves down in a wheelchair.
We listen to the recommendation of our physicians and we sheepishly explore the idea with our loved ones. We recognize that using a wheelchair would keep us from tripping and falling. It would help us conserve our limited energy and sure would make daily life a lot easier. Why, then, is this decision so emotionally intricate and agonizing?
Let’s go all the way back to the beginning. Does this sound like you? You contracted polio as a baby, child or young adult and endured a long hospitalization. You were separated from your family at a tender age and probably still have some psychological wounds from that trauma. You may have emerged using braces and crutches for mobility. However, in many cases, your medical professionals gradually eliminated these aids.
You made an impressive recovery, walking unaided for many decades. Then approximately 30 years after onset, you began to experience weakness, fatigue and pain. You may have been diagnosed with postpolio syndrome.
You now use a cane for support in walking; possibly you were fitted for a brace and/or forearm crutches. You may find that motorized shopping carts at the grocery store are a colossal help to you. But life is still much more difficult with PPS.
You may be declining activities that involve walking. You sit back and reluctantly stay home, unable to do some of the activities you once enjoyed due to increased weakness, pain, fatigue, fear of falling and lack of endurance.
Did you once adore pop concerts in the park? Now you decline to go because the walking on that uneven grass is far too difficult for you. You stay home.
Did you once savor the fun of cruising the mall with your daughter-in-law? Now you decline to go because that much weight-bearing and walking is far too painful. You stay home.
Did you once thrill to walking the boardwalk at the beach absorbing the sights and sounds of the ocean atmosphere? Now you decline because the length of that long, winding boardwalk is too much to manage without pain and fatigue. You stay home.
You and your polio medical professionals recognize that the time has come for you to use a wheelchair for most of your mobility needs. However, the thought of appearing in public in a wheelchair fills you with dread. The key phrase there is “appearing in public.” Alone in your home, you love the way you can move smoothly, gracefully and without pain and fatigue. But the image that most terrifies you is the thought of using your wheelchair out in public. Your emotions overflow with panic and anxiety. Why? You realize on a rational level that using a wheelchair would be very liberating. But that rational base is overpowered, indeed almost buried, by the negative emotional overtones that shout: “No! No! No wheelchair for me!”
Let’s examine the underlying origin for this resistance.
These are some of the contributing factors in your resistance to using a wheelchair. However, we have only examined the surface reasons. The deeper, overriding reasons for your reluctance stem from a negative association of ideas. Think of that statement as an algebraic equation: You are on one side of the equation and disabled is on the other side. That association of ideas is laden with shameful emotional overtones. Why? Because historically people with disabilities are stigmatized. They occupy a low rung on society’s “A List.”
I remember the various social cliques in high school. Teenagers were ranked in hierarchal order as “Preppies,” “Jocks,” “Greasers,” and “Nerds.” The most popular kids were the Preppies and the least popular were the Nerds. Very few handicapped kids landed in the popular crowd. We absorbed that message like water into a sponge. Although those classifications have undergone various transformations over the years, I have a sense that we still long to belong to the “popular crowd.” Our resistance to using a wheelchair is intimately connected to our unwanted view of ourselves as disabled. We are influenced by a deep-rooted prejudice in the society that it must be better to be ambulatory than to be in a chair. For example, there could hardly be a greater medical triumph than getting someone “up out of a chair.” Consider the hidden negatives in our language: “wheelchair bound,” “confined to a wheelchair.”
Almost universally, people who are not totally wheelchair dependent make too little use of the wheelchair, if they are willing to use it at all. Likewise, people who are gait impaired but not crutch dependent make far too little use of crutches, if they are willing to use them at all. “I’m not that disabled. I don’t need it/them,” are considered sufficient reasons to forego the enhanced function, ease, safety and health benefits they could have from selective use of adaptive aids.
When a polio survivor chooses to use a wheelchair, he/she faces emotional, interpersonal and social issues that can be deeply troubling and anxiety producing. How my heart pounded with dread and self-consciousness the first semester I wheeled into the faculty meeting. That wheelchair gets the credit for “outing” me. I now had to admit to the world that I was, indeed, a Person with a Disability. But ever since that day... oh, the liberation that has been mine!
It is an important healing step to act on the belief that it is OK to be you. Know that the consumerist driven, stereotyped images of “attractive” and “popular” are oppressive falsehoods rather than the truth. Consider this thought: it is stunningly appealing for a person with a disability to exhibit confidence and self-acceptance. People are not used to seeing this in someone who is disabled. When you perceive others’ positive responses and you realize these responses are to you, as you are, you will be freed. You will receive positive reaction to the real you, not despite your disability, nor because they are unaware of your disability, but to you. You will shed a burden you may have carried around since adolescence.
The good news is that the stigma is diminishing. Societal attitudes about people with disabilities are vastly more accepting today than they were in the doo-wop era of the Fifties. Are you still suffering from antiquated tapes playing incessantly on your mental tape recorder? If so, it is time to erase those old tapes. You can trade in your negative thought patterns for powerful, new, positive beliefs. You can liberate yourself and claim your rightful place in society. If you love the comfort and ease of using your chair in private but dread the thought of using it in public, you can use the power of your human consciousness to restructure your perceptions and free yourself. You were paralyzed by polio; don’t be paralyzed by society!
Think about sitting proudly, head held high, in your sleek manual chair or perhaps zipping around in your sporty power-chair. Visualize yourself maneuvering gracefully over the grass at the pop concert in the park. How lovely the grounds look when you are no longer fearful of tripping. How sweet the evening air as the melodic musical sounds touch your heart.
Picture yourself on a swift mobility scooter at the shopping mall with your favorite friend, scooping up bargains. You can shop ‘til you drop and still have energy left over to go out to dinner at the end of your day.
Envision yourself travelling the length of the boardwalk at the ocean. Your senses overflow with the ambiance of the seashore. Since you have no pain or fatigue, you are much more free to hear the seagulls scream, to smell the salty sea breeze and to celebrate the sheer joy of this outdoor experience.
I know that this is still a difficult decision. Generally speaking, I think we are in a climate where the mobility-impaired person has to swim upstream against self-imposed inner conflict, as well as from family and friends who are caught up in the “use it or lose it” mantra. If we are to make optimal advantage of wheelchair mobility, we need a lot more people willing to swim upstream, proudly and confidently, to change that climate. Won’t you join me in the swim?
Dread of using a wheelchair is based on old emotional baggage. Toss that baggage out as you would a sack of old trash. Wheel with pride and flaunt your self-acceptance. You will be an inspiration to all who encounter you.
Linda Wheeler Donahue is a polio survivor, Professor Emeritus of Humanities and President, The Polio Outreach of Connecticut. She is a frequent speaker at conferences and seminars, focusing on the social/emotional complexities of disability. As a result of her grassroots advocacy work, President George Bush, Sr., invited Linda to the White House Rose Garden signing of the Americans with Disabilities Act on July 26, 1990.
Professor Donahue has published numerous articles on subjects of positive living, disability dignity and increasing happiness through conscious choices. She welcomes feedback and can be reached at LinOnnLine@aol.com.