Disability Advocates/Consultants of South Texas

What's New/News:                                             Vol. 2, Issue 6

ADVOCACY NEWS

With the hot weather comes a summer warning for some individuals with disabilities. So a timely subject is burn victims. People with burns must be very careful to protect their skin from the sun. The burnt skin retains the colors from the sun. When a burn victim’s skin becomes red or brown from too much sun, the colors do not fade. Individuals with burns must use sunscreen of SPF 30 or above and use it frequently. Moisturizers need to be added to the burn scars so that the skin does not become hard and dry. Hats and thin scarves can be used to block the sun’s rays also. Another good precaution is to avoid going out in the sun during the hottest times of the day. If burn victims use sun block, moisturizers and hats, the skin will be safe. Since the skin of individuals with burns is already damaged, allowing the sun to do more damage can only aggravate the problems with which burn victims must contend.

Wings

The most important, the most valuable thing one person can give another is freedom. The founders of this nation understood that concept and wrote our Constitution and the Bill of Rights to give the citizens of the United States as much freedom under the law as possible. Why then can’t we extend this gift to individuals with disabilities? Why do so many parents and caretakers of individuals with disabilities want to protect them to the point of smothering them and destroying their individuality? My guesses, based on experience, include selfishness, guilt and fear.

We are all selfish. We have a need to be wanted and loved. Individuals with disabilities seem to need us more. Often, they do need us more. Children with disabilities can develop slower and learn at incredibly slow rates. Parents put so much energy and time into raising them that it is hard to let go. Who will need us when the child with a disability is gone? Children without disabilities grow up and go off on their own. A dependent child, a disabled child can be kept forever (for our benefit, not theirs). So many children and so many adults with disabilities are kept at home, smothered by caretakers, who refuse to give the individual the "wings" they need to leave the nest. There is nothing virtuous about denying a human being the opportunity to reach his or her maximum potential.

I have watched one woman make her children totally dependent. She seemed to want them both to be disabled so they would need her. One child is now grown and lives at home. He is disabled all right. His major disability though, in my opinion, is "mother". This poor individual will never lead a "normal" life. Mother won’t allow it. The other child is young. The school would not agree with mother’s diagnosis or her recommendations for educating the child. The mother pulled the child out of the school program and is "handicapping"—I mean "educating"—the child at home. The child is separated from all other children. There is limited interaction with the world. Mother is in total control. Each day the symptoms of the child’s "disability" increase and the chances of this child growing wings and leaving the nest decrease.

Readers, that’s plain self-centered behavior on the part of the mother. Unfortunately, this mother is not alone. I have known many other parents like her, both mothers and fathers. One parent contributed to the child’s disability by allowing the child to do exactly what the child wanted to do. When the child became uncontrollable, the parent got tremendous attention by bemoaning her martyrship. Poor thing!

Guilt is another reason to smother the child. The parent(s) blames himself for what happened. The parent turned his back for just one minute and the child who is now brain-damaged almost drowned in the pool. The parent ran a red light she could not see. The car was hit and the child is in a wheelchair for life. I sent my children to an uninsured church and the church blew-up. I understand guilt. If I had only said "no", my two children would be healthy today.

How does one ever get rid of the guilt? The answer is simple--you don’t have to get over the guilt. You just have to raise that child to be as independent and self-sufficient as possible. You must do the job of a parent. Your guilt does not give you the right to destroy the life of that child. Once you do your job as a responsible parent, then you can feel as guilty as you want. If guilt makes you feel better, go for it. But don’t drag an innocent child down with you.

Caretakers of adults with disabilities go through guilt trips, too. One woman accidentally caused her mother to fall and break her hip. The mother was in a wheelchair and had limited use of her arms as a result. The woman gave up everything else in her life to care for her mother because the woman was filled with guilt. As a result, the woman became bitter and angry. No one wanted to be around her. The woman "protected" her mother from those "overzealous" therapists who wanted to help the mother regain some use of her body. The doctor actually believed that, with proper therapy, the mother would walk again. She was never given that chance. He daughter felt too guilty to allow her mother the freedom to rehabilitate and lead a more productive life.

The final reason that caretakers and parents refuse to allow the individual with a disability to become independent is fear. They fear that the mentally retarded child will not show good judgment and could get hurt. (What teenager shows good judgment? They all get hurt.) We cannot protect our children without disabilities from the world. Caretakers also fear that someone will take advantage of the person with a disability. It is possible. Life has risks. Caretakers often believe that no one would be as conscientious about taking care of the disabled person. That may be true. That’s why we need to help these human beings become independent and self-reliant before we are no longer here. At least then we can watch and see if our charge can survive without us. We can intervene if help is needed. If we wait until our death to allow these individuals to fly, how can we help them if they falter? They need to leave the nest in order for us to monitor their progress and be hands-length support.

I have seen too many individuals with disabilities placed in institutions such as nursing homes upon the death of the caretaker. These individuals are there because no one allowed them to grow. No one gave them wings and pushed them out of the nest urging them to soar. Instead, they sit in their wheelchairs, lonely and frightened of a world they never experienced and never tried to conquer.

If I seem a little insane on this subject, believe me, I am. It is not right to prevent anyone from meeting his potential. Let’s be helpers and cheerleaders. Let’s encourage the individual with disabilities. Let’s teach discipline and self-reliance. Let’s make them contributors to this world, not helpless dependents.

Hearing Loss

Do you have an older relative or friend who cannot hear and refuses to wear a hearing aid? Do you know of someone who was able to convince an elderly person to use that aid? I would like to hear your suggestions to this perplexing dilemma. Please write if you have any remedies, stories or ideas.

Talk to you next month. Take care.

Karen

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