03/16/2001

Readers: Disabilities Are No Fad!

Readers say that it's already tough enough to have a disability; never mind whether it's in vogue or not. (See article: "Disability: Is it Fashionable?") The people who criticize parents and others for fighting for services for themselves or disabled relatives have probably never been the target of hostile remarks, indifference and downright rudeness that people with disabilities repeatedly are. Not one of them would ever want to trade places. In general, readers advise critics to try walking in someone else's shoes before making assumptions about their motives.

A representative sample of reader letters follows:

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Dear Beth,

I have just had the opportunity to read your article concerning disabilities. I found it insightful and it hit home on a multitude of levels. My wife, Christine, has cerebral palsy, walks with crutches and manages to make a fine home for my children and me. Her insights and morality far exceed those who claim some form of disability. She has overcome real parental abuse, a multitude of surgeries, and the every day stares of our so-called enlightened society. As far as assistance, she doesn't even want a handicap sticker to allow her to walk closer to the store.

I find it most interesting that acquaintances are more interested in her getting this convenience to serve their own laziness and have even seen some try to convince her of some illness being as debilitating as her situation.

On another point, those who would run to have their children classified with some learning disability and treated with a drug regimen only risk their future. What would happen if that child would want to join the military later in life only to be disqualified due to the quick fix. One of our children had to face that reality and decided to handle what is termed ADD through self-discipline and goal setting. Today, she is proudly serving in the United States Navy.

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In reading the column about "everyone" rushing to get the label of disabled or to be seen as a victim of something or other, I felt the gall rise within. On the one hand, I have heard for many years, the rejoinders of "Every family is dysfunctional, "All families have their problems," or "You don't LOOK disabled" when I have tried to talk about issues of dysfunction or disability to people. I would agree that the near onslaught of support groups and twelve-step programs for almost every condition of life has, in part, inspired these sorts of responses.

However, I also believe that many people just do not want to know that someone who "looks fine" has overcome huge health issues or deals with them on an ongoing basis, or that the same person has had TRUE dysfunction in the home. If a child has grown up believing in herself or himself and feeling safe, has been taught how to function independently and to pursue individual goals and dreams, has learned that love is something given not just grabbed for, has had a parent or parents who know the meaning of unconditional love and of letting go... then the family isn't dysfunctional, even if alcohol or emotional problems or crises have crept up throughout the family history. A child may endure periods of chaos or trauma, but it is what the parent(s) do to help the child learn to cope that matters.

Some disabilities are more visible than others -- we can understand the enormity of sensory disabilities and visible mobility problems. Some traumas are more dramatic--the loss of a child, the kind of physical abuse that results in hospitalizations and visible bruises. But when I was a child in the fifties and early sixties, no one would listen to the truth. No one wanted to hear of the violence in the home or of the alcoholism. It was unpleasant and the ministers and the teachers preferred not to believe me. I cried out for help at a time when no one was taught to pay attention to a child's cries for help. And the disability created from the violence did not show for years, when a spine finally deteriorated to the point of many, many hospitalizations and surgery and therapy.

I do not see myself as a victim. I see myself as a writer and a singer and a painter and a loving friend and a parent--a variety of roles that add up to me. But my disability is also part of who I am and it helped shape me ... for the better, not just the worse. And the incest/alcoholism/violence in childhood was real and exacted its price. I get angry by the insistence of some that we forever label ourselves by the abuses of our childhood. At some point we must look at them, deal with them and stop hiding them...then we move beyond, if we want to be whole. My parents messed up, but they also did some things very right. Assuming the "badge" of victim at first allows us to look at uncomfortable, often terrifying truths. Discarding the same badge opens the door to see the times in our past that were not "dysfunctional," that were sweet or fun or healthy.

I am so glad that today there are resources for children with disabilities, resources for children to give voice to their pain or terrors endured at home. We don't want children to live with perpetual victimhood labels. We don't want to use the term "dysfunctional" lightly. But I am so very tired of people assuming that they know what a "real" hardship is just because it is visible to their eyes. Overcoming pain, a violent past, a childhood that beat one down is a triumph.

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Being the wife of a husband who is dyslexic and mother of a child who is dyslexic, I can honestly say that being learning disabled is a huge disability to live with and overcome. Granted it is not a disability one can see, and maybe that is why it is sometimes hard to understand. However, I see the struggle every day.

My husband started his own business 16 years ago and is very successful. He runs a petroleum contracting company and employs 25 people. He has also been president of the local Little League for 6 years. He surrounds himself with people who can do the things he cannot, and he does the things he is good at. My son is now 16 and at Landmark School in Massachusetts for Dyslexics. He had a 3rd grade reading level going into our local high school. Everyone knew he could not read or spell. Books were put on tape and everything was read to him. What Landmark has done with him in one year is nothing short of a miracle. Dyslexia is a disability that one can learn to live with and overcome. Diagnosing it and treating it early on is the key.

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I do not know which I feel more, anger or sadness regarding this article. I hope that parents are not really trying to get a label or diagnosis for their "normal" children. This only results in hurting those who truly need special education services for there children.

As the mom of twin two-year-olds who are obviously moderately autistic and have had to go through many evaluations, I must admit I am completely burnt out at this point. I hope that when the time comes for them to go to school, that the funds are there for their special education and haven't been used on children who did not need them.

We as parents of special needs children would give the shirt off our back to make everything better, but sadly that will never happen for us. For goodness sake, don't wish anything on your children, in hopes of receiving a little more 1 on 1. Could you really face yourself everyday in the mirror if your normal child were suddenly "special needs" for real?

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I read your article with interest. Notice that the disabilities parents claim their kids have in order to get more services in school have to do with mental health. Because these days it is OK to say, "I have a mental illness, so I have a disability." Bull! The world is a cruel place for those of us with physical disabilities. It has been for centuries...and although great strides have been made in the last 40 plus years...there is still a long way to go.

Most of the people, kids and adults alike, who claim they are learning disabled, just need a good swift kick in the butt. This group does not want to deal with the responsibilities that come with life, so the label learning disabled is used as an excuse for not being responsible.

I went to school in the '60s and early '70s with a physical disability, during the time when if you had any physical dysfunction, you were placed in the Special Education Class. Thanks to my Mom, I went to public school and was "mainstreamed." Unfortunately, my physical disability just showed enough, that I was ridiculed in school. It was an awful time.

If you think I sound angry, I am. I'm tired of fighting for basic rights. Why do I have to do that?

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I just read your column about disabilities. I can't begin to tell you how fed up I am with the attitude that so many people share. My daughter is ADD and I don't consider it a badge of honor. It totally breaks my heart. Having her "labeled" was one of the hardest things that I ever had to do, but we did it so that she would have a chance to succeed in school.

My daughter is bright, warm and loving, but she is unable to focus on her schoolwork for very long. She gets teased by her peers, and we get numerous phone calls from the school because of her lack of focus. She cries at report card time because most of her friends are bringing home all As, and she is not. Would some of your readers really want their child to trade places just for their child to receive a "little more attention?"

I have gotten so much criticism from outsiders, teachers, etc. because they think that ADD is not a perceived disability. I have had people tell me that I have done my child a disservice. Teachers tell me that if I would just be consistent there wouldn't be a problem, and others tell me that all kids are ADD. I'd like them to walk a day in my daughter's shoes -- or my husband's or mine, for that matter. Would these same people tell someone in a wheelchair that not being able to walk is all in their head or a cry for attention?

We are hoping to keep modifications to a minimum, to avoid special education classes and medication, and to help this child grow up to be a normal, healthy, responsible adult. Thanks for letting me blow off steam about a subject that hit me square in the heart.

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The writer of the letter in your recent article has absolutely no idea what it takes to be disabled, to be labeled or for a parent to have their child labeled. First, it is a sign of resignation and then acceptance that your child is "not perfect in every way." Then it gives us strength and direction to get the child the help they need - no matter how encompassing the disability. Often, without a "label" (which is actually a diagnosis) the doctors and education specialists cannot help our children and their needs might continue to go unaddressed.

Personally we do not consider our child's disability a "badge of honor," nor do we see ourselves or our son as heroes. Each day is a struggle, but we all have struggles.

Walk for one day in a disabled person's shoes or in the shoes of a parent whose child is disabled; then you may critique.

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Please send questions or comments to bbruno@snet.net.