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Early Years with a Disability - Part 6

Contact with Others with Disabilities and Family Taboo on Talking about Disability

Apart from aggressive Anthony, I have few memories of people with disabilities in my neighborhood during the time we lived in the small house on North Heidelbach Street. I was aware that a male neighbor on the next block had tuberculosis. Rather than expressing concern or sympathy, most of the adults acted as if this was something shameful in that family – something that should only be talked about in hushed tones. Even more clandestine were reports that a man in the neighborhood had had a mental collapse, a “nervous breakdown,” and was found crawling on the sidewalk, crying.

Within our extended family, there was some communication, but not much, about our Great Aunt Ruth, a sister of my father’s father (our Grandpa, Jack Burgdorf), who had Down Syndrome – referred to at the time by the unfortunate and misleading term “mongolism.” We usually only saw Aunt Ruth on the relatively rare occasions we went to visit our great grandparents, with whom she lived most of her life (I think she was in her thirties when I first saw her) or at a few family gatherings. She had some degree of intellectual disability and was only partially verbal; it was very difficult to understand her speech, although she had some comprehension of things said to her. Other than saying “Hi,” I do not think I ever had any conversations with her. She seemed cheerful and smiled a lot, and was always dressed nicely. That is about all I know or was told about my Great Aunt Ruth, who is deceased now, other than that she never went to school and was taken care of by her family.

I actually had a bird’s-eye view for observing, up-close-and-personally, another serious disability – my father’s alcoholism – but, like most people at the time, did not consider alcoholism a disease or disability but, rather, as a moral failure, a lapse of proper behavior. Given the frequency of drinking in my father’s family and by his cronies, my childhood observations would actually have given me enough material for a doctoral dissertation on the symptoms and effects of alcoholism. But I had no appetite to learn about or talk about alcoholism; it was a problem that I just wished could go away. And I was uninformed about, had only minimal exposure to, and was generally disinclined to associate with, people with other disabilities. I cannot recall reading a single book that dealt with disability during my childhood, unless you count those that included one-dimensional fictional characters such as Long John Silver, Captain Hook, and Tiny Tim.

It is only natural that I should have gotten much of my perspective on disability from my family, and I did. Through numerous cues – including pained expressions, awkward silences, and changing or tiptoeing around the subject – I learned that my disability was basically a taboo topic: we dealt with what absolutely had to be dealt with, but otherwise never talked about it and in effect pretended it wasn’t there. As in "the curious incident of the dog in the night-time" in a Sherlock Holmes story where the key to solving a mystery was the dog that didn’t bark, the silence in my family about my disability spoke volumes. The message I heard was that my disability was a tragic, dreadful, heartbreaking condition that one should keep quiet about and not mention or discuss unless unavoidably necessary. I did not carry it as a matter-of-fact thing that had happened to me, but rather as something shameful. Many people said or intimated “What a shame,” when they learned about my disability. They meant this as empathic recognition of misfortune that had occurred to me. I felt, however,         that they also meant that my condition was something to feel shame about, and I believe that my parents felt that way too.

In addition to our shame over poverty and alcoholism, my parents and I felt ashamed of my having a disability.

I cannot blame my parents for being overwhelmed. They were young and immature, had had three kids in five years, and were struggling financially and emotionally. They certainly had no guidance, training, or role models in how to deal with a kid with a disability, and watching me not be able to use my right arm must have been like an ongoing stab in the heart to them. I am not sure if either of my parents ever got over my having polio.

My impression is that my mother was always something of a worry wart, but dealing with a dreadful illness that crept up on them unexpectedly, without warning signs or symptoms, and did permanent damage to their first-born son within a matter of a few days, ramped up her insecurities and anxieties big time. She felt deeply that maybe she had done something to cause me to contract polio, such as taking me to a public swimming pool or having mistaken my crankiness for teething, or that maybe she had not done enough to help ameliorate the damage to my arm (doing more repetitions of arm exercises or making me keep the uncomfortable brace on for more hours?). These feelings of guilt (totally baseless as far as I am concerned), coupled with the uncertainty caused by finding out that a serious malady can crop up out of the blue, led Mom to became obsessively vigilant about health concerns. From as far back as I can remember until well into my adulthood, my mother was habitually putting her hand on our foreheads to see if we had a fever or asking us to say “Ahh” so that she could look down our throats for redness. She was fanatic about Neosporin, and insisted that we apply the ointment to any scratch or cut, no matter how minor, to make sure that it did not become infected. Unfortunately, while she was eternally on the lookout for medical problems, when she found them, Mom’s home remedies sometimes left a lot to be desired, such as the earache treatments that are described in a subsequent section, putting butter or lard on a burn, rubbing whiskey on the gums of a teething child, or a dose of castor oil (which we found disgusting to ingest) to address constipation. The Neosporin, on the other hand, worked very well.

In sharp contrast to Mom’s frightfulness, Dad sought to project an image of hard-boiled, masculine dispassion. His ideal male was one who exhibited an unflappable and unflinching steely toughness – a strong, brave, honest, adventurous (even reckless), hard-drinking, uncomplaining, “manly man.” He disliked and looked down upon softness or weakness in a man, and wanted his sons raised to be tough and stoical. “Boys shouldn’t cry” was a common refrain from my childhood. Despite the hardscrabble persona he cultivated, however, when he was not drinking, we sometimes got to see a very different side of Dad. He could be warm, caring, gentle, fun-loving, humorous, patient, idealistic, and kind. But one thing he never did was to articulate his feelings about difficult things.

As to my disability, at no time did Dad ever talk with me about it. Insofar as he indicated by his actions, his attitude seemed to be that I needed to get tough and not let it get in my way.

This had the advantage of pushing me toward integration in mainstream society and learning to compete in the world at large. It had the disadvantage of affording me no avenue to process my feelings and get company and support for dealing with those that were negative or scary. Despite his stiff-upper-lip approach I suspect that my father felt some of the same inadequacies and irrational guilt in dealing with his child’s disability that my mom did, and it almost certainly added to his motivations for drinking. Many people use alcohol to anesthetize themselves from uncomfortable or intolerable feelings

I think that both of my parents shared feelings of inadequacy. My mother paraded her fears and insecurities like a banner, while my father put on an armor of unruffled self-control or hid behind a wall of alcoholic stupor, but the self-confidence of each of them was a thin balloon, easily punctured. They shared a feeling that life had it in for them – that they lived under a dark cloud of misfortune. When I was older, Mom told me that because several bad things, including my dad hitting a parked car and my contracting polio, had happened to our family in the month of August, she and Dad called that month “Black August,” and expected the worst when it rolled around each year.

However, for the most part, I have to theorize or guess about Mom and Dad’s feelings about themselves and about polio and my messed-up right arm. Their real feelings are unknown to me because they never talked about them with me. In general, talking about feelings was not a currency in our family, and not talking about hard things led, of course, to keeping it all inside. Looking back, one of the biggest problems for me in growing up was that my parents never talked about their feelings about my disability, never inquired about mine, and seemed totally indisposed to talk about it. I was left with a ton of unexpressed feelings, questions, and fears.

Continue to Family Background and the Gray Period