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Early Years with a Disability - Part 2

How “Crippled” Is He?

In August of 1949, my parents had to begin to adjust to dealing with their baby with a disability. The inability to lift my right arm, which had alerted my grandmother and parents to the fact that something was wrong, did not correct itself nor respond to medical or therapeutic treatment. I was too young to remember ever having been able to use my right arm normally.

Although I was naturally right-handed, my right arm dangled uselessly from what remained of my right shoulder, and I had to learn to do everything with my left. While my limitation was quite a blow to my young parents, it was only with the passage of years that I began to appreciate the difference between the use that others had of both of their shoulders and that I had with only one of mine. It seemed, however, that apart from my right shoulder and upper arm, all of my other parts and processes were working alright. It was only as an adult, being measured for a wetsuit for scuba diving, that I learned that my right leg was an inch smaller in circumference than my left; apparently polio had attacked my whole right side, though substantial permanent damage was done only to the upper arm and shoulder, and, with no real limitation in function, to the girth of my leg.

My right arm was not totally useless. The fingers and wrist worked just fine, though they might as well have been suspended by a rope from the remains of my shoulder. The “hinge” and rotational functions of my elbow joint were intact, but the almost total destruction of my biceps muscle made it impossible for me to raise anything, including the arm itself. I could not use my right hand to touch my face or scratch my back, or extend my arm to the side or front as part of the process of putting on a shirt or coat, I could not raise my right hand to shake hands with someone, or put it up on my chest during the pledge of allegiance. But if I used my left hand to put something in my right hand, the hand could grasp and carry it. So, while my arm could not reach for or lift things, the gripping hand at its end could lug them around. If I put my arm on a table, by placing it there with my left arm and hand, I could hold and manipulate things on the table top, within the scope of movement of my wrist and hand.

Though, for the most part, I had to learn to do things with one hand, as time passed, I became more adept at maneuvering my body to get the right arm where I needed it. Thus, I was able to bend down and use both hands to tie my shoes, with the combination of gravity, some pressure from the fingers, and occasional help from other hand, keeping the right hand in place. Or I could move my chest and shoulder quickly to “sling” the arm forward to grab something. If my left hand put my right on the chain of a swing, the right hand could grasp it well enough that I could do a passable job of swinging. I could not, however, climb across the row of overhead bars, like a horizontal ladder, that we called “monkey bars,” which children would hang from and cross hand-over-hand from one side to the other. I did, however, learn to hold onto the handlebars of a bike and ride quite well, with my left arm doing the lion’s share of the steering.

Given the rampant fear of polio around the country at the end of the 1940s and early in the 1950s, it is not surprising that people in our neighborhood did not want to risk any chance of infection by coming into contact with my family. My mother described the situation by saying that the neighbors “shunned us.” At a time when customers had the luxury of having bottles of milk delivered to their door, the milkman refused to make deliveries to our house. So in addition to getting used to what they perceived as the horrifying idea that their son had a disability that might be permanent, my young parents had to deal with being social outcasts. Fortunately, as the weeks and months went by the fear of our contagion gradually subsided. Actually even by the time that my condition had presented itself and been diagnosed, it probably was no longer contagious anyway.

While my parents got this dose of social alienation at the beginning, as time and my infancy passed, I gradually became aware that some people treated me as if my right-arm problems were quite a big deal, and that, as a result, they thought of me as something other than a regular part of the herd. An observant child, I noticed that many who were around me reacted strongly to my limitations. Upon discerning my limited ability to use my right arm and learning it had resulted from polio, people’s facial expressions and behavior not infrequently reflected some combination of discomfort, horror, and pity. I read their inner thoughts as “How horrible! I feel so sorry for him. I don’t know what to say.” As with most children of a young age, I was looking to other people for signs of approval, acceptance, warmth, and sympatico; all too often that was not what I got. I do not mean to criticize people for having whatever thoughts and feelings that they happened to have. What I am chronicling is that I noticed people’s reactions and took from them the message that I was different from other folks, and not in a good way.

After I had polio, every year or so my mother, following the medical advice she had received, took me to a medical facility that she, using terminology of the time, called the “Crippled Children’s Clinic,” although I am not sure whether or not that was its official name (there was a Division of Services for Crippled Children in the Indiana Department of Public Welfare; and a Vanderburgh County Society for Crippled Children and Adults in our county). It may have been the “crippled children's clinic for the indigent,” in Evansville mentioned in a 1954 article in the Journal of the American Medical Association.[1]  I have no specific recollection of the medical examinations I received, but we apparently got pretty good treatment and guidance. Well-intended but somewhat less-than-inspired was one piece of advice that I remember: in the interest of having vigorous exercise, I should jump over sawhorses, which thereafter I occasionally did when there was a sawhorse around. The main thing I recall about our visits to the clinic is the other children I saw in the waiting room. Some of them had various levels of paralysis from polio – I saw kids with “shriveled” limbs, kids with braces, kids with crutches, and kids in wheelchairs. Other children had disabilities with different causes and manifestations, such as absent or amputated limbs and various kinds of malformations and birth defects, including one kid with an extraordinarily large head presumably caused by hydrocephaly (my mom told me it was “water on the brain”). In the waiting room my mother struck up a conversation with the mother of a boy who, while all of his limbs and features seemed to work fairly well, had a very unusual look about him. His mother told my mother that the doctors had diagnosed his condition as incomplete twinning – biologically he was supposed to be two persons but, in utero, the two parts had fused together pretty much right down the middle in a way that gave him a roughly standard frame and appearance but was actually comprised of two parts, right and left, that were not symmetrical and only more-or-less matched up in size and other characteristics. One can only imagine the impact of this condition on the formation and functioning of the boy’s skeleton and internal organs. In any event, visits to the clinic exposed Mom and me to an array of disabilities.

At the clinic, we children had almost no interaction with one another, and, generally shy and introverted anyway, I experienced some uneasiness being around the others. In part, I think I was overwhelmed at confronting disability on such a large scale. I also felt some reluctance about being, or being viewed as, a member of this particular group. I had not come to terms with my disability, and I certainly was not ready to embrace my being lumped together with the others I saw at the clinic as part of the grouping “crippled children,” or “handicapped children,” or even “disabled children.”

Judy Heumann, a pioneering disability rights activist whose role and accomplishments will be discussed in later sections, has championed the benefits of associating with and bonding with other children with disabilities. While a vigorous advocate of the integrated inclusion of people with disabilities in schools and activities, Judy has described the important ways she profited by going, from the age of nine until she turned eighteen, to summer camp for kids with disabilities. Her experiences at camp, and its impact on her future as a disability advocate, are profiled in Judy’s 2020 poignant memoir, Being Heumann, and the movie “Crip Camp”: A Disability Revolution. As journalist Joe Shapiro observed in his excellent book, No Pity, in the mainstream schools that she and her parents had fought to get her into, “she knew she was always ‘different,’” and not "completely accepted by my peers," while “[a]t camp she could feel comfortable and self-confident about being disabled.”[2]  Shapiro elaborated on Judy’s views as follows:

With kids who were blind, deaf, or had physical disabilities and mental retardation [intellectual disability], she confessed secrets and found others shared her doubts and worries. "We had the same joy together, the same anger over the way we were treated and the same frustrations at opportunities we didn't have," she says. For the first time, Heumann confided that she suspected people stared at her in her wheelchair and that it made her uncomfortable. To her delight, every other kid with polio had the same feeling. At home she watched "American Bandstand," but disabled kids, she was told, "were not supposed to dance." At camp, "we danced and we danced so well that we felt good about ourselves." A kid in a wheelchair could be just as cool as "American Bandstand" dancers—at camp, anyway—and not be just another sick kid excluded from dances, dates, and even sex.[3]

In short, kids with disabilities can profit by interactions with other kids with disabilities in a number of ways, including social acceptance, camaraderie, peer support; and gaining a sense of identity and awareness of the history of the struggle of individuals with disabilities for an equal place in society.

None of the above was known by my parents, and certainly not by me, when Mom and Dad were approached about sending me to Camp Optimist, a local camp for “crippled children” run by the Optimist Club of Evansville, Indiana (Downtown), a local service and fellowship organization. Whether from a refusal to accept fully that I had a disability, from feelings of discomfort about my associating with and relating to children with disabilities and my parents having to be exposed to it, from a desire that I retain a self-image of myself as “normal” that would better serve me in making my way in mainstream society, or from some combination, my parents rejected the idea of sending me to a camp for children with disabilities. I believe that their decision had both positive and negative implications for me. On the one hand, I kept on believing that I was a regular person in ordinary society and that I was expected to do, and was able to do, everything everybody else was doing. In fact, however, I was not fully able to do all the things that others did and I would not be treated by others as fully like them, and I had no one who was in a similar situation whom I could go to for validation, camaraderie, consolation, and advice. Accordingly, I often felt that I was significantly different from, lesser than, other people, and I was totally isolated in these feelings. My isolation made throwing me in with the mainstream, something that was supposed to instill in me a sense that I was just like everybody else, into an experience that I was totally alone and not like anybody else.

Another issue about whether to choose a special disability program or be integrated into the regular program had been raised when it became time for me to go to school. In those days, many localities had some educational facilities that were exclusively for students with disabilities. Should I go to one of those or should I be in the mainstream neighborhood schools? On that question, my Dad was adamant that I should be enrolled in the regular schools. Since nothing was wrong with my intellect and ability to learn (and I had no mobility problems that would raise issues about architectural inaccessibility of school buildings), there was really no reason for me not to attend mainstream schools, my father was right, and I am very grateful to him for his strong stance. Accordingly, I was enrolled in a public school kindergarten and then in the same elementary school my father had attended – St. Joseph’s Grade School, a Catholic parish institution in our neighborhood. Years later, I would learn that, when I was going to school, roughly 800,000 children with disabilities of school age in the U.S. were receiving no formal education. I guess I was lucky to be in school at all.

Continue to Part 3: Kindergarten and Early Grade School: Fitting-In, Learning to Write, and Teacher’s Pet

[1] Council on Medical Service, Medical Care for the Indigent in Vanderburgh County (Evansville), Ind., J.A.M.A., vol. 154, no. 1, p. 83 (Jan. 2, 1954) (“Protestant Deaconess Hospital maintains a crippled children's clinic for the indigent, employing the services of an orthopedist, a pediatrician, and a nurse.”).

[2] The quotations are derived from Joe Shapiro, No Pity, pp. 101-102.

[3] Id. at p. 102.