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Appearances count.

Disability brings barriers which sometimes seem insurmountable: the inability to talk, walk, reach out and touch, or turn around. Dependence on others to care for most basic needs is a necessity. Reliance on professionals to train and teach skills is another. Finding a way into the mainstream is yet another.

Who bears the responsibility for quality of care? Who has the ultimate power to make sure that "we're doing the best we can?"

I recently spent some time with a group of young adults who were learning to use communication devices. One of the men wanted to program his Liberator, which involved lifting the top keyboard to get to the second keyboard under it. The very competent and kind professional who was working alongside this man helped him do it by gingerly lifting the lid from one of the edges where there was no drool. She tip toed with her fingers to do what she had to do while avoiding drool.

I immediately went for paper towels and began wiping away the drool to make the device "accessible." She asked me to wipe a certain area so that a color coded sticker could be applied.

Frankly, I was struck by the lack of communication about this issue. Whose responsibility is it to say, matter-of-factly, "Let's talk about how we can best handle this drool." I can see both sides and why there is reluctance to be open, but the fact is, somebody, somehow has got to deal with it.

People with disabilities have many obstacles and barriers to deal with. But so do we, their circles of friends, family and professionals. We are allowing obstacles to stand in the way of inclusion by not being honest and open. There are topics which must be addressed. Personal hygiene and coping with drool are two such topics. In a perfect world, the person with the disability will give personal care attendants and other professionals instructions. But for now, the responsibility lies on us to teach, to lead.

Parents cannot send children to school in shabby clothes. Hair must be clean and combed. Hands clean. Teeth brushed. These are the standards of our world. Parents have the same obligation to their child with a disability as to their child without a disability. Why do nondisabled kids get braces for their teeth, but often kids with disabilities do not? Why do non- disabled kids get cute haircuts and stylish clothes, but often kids with disabilities do not?

Parents have an obligation to teach their children to be assertive so that when they grow up they can give their personal attendants directions. They can become adults who expect to look their best.

The root of my concern is inclusion. If people present themselves in a positive way then others will respond to them positively. We have created programs and policy to guarantee inclusion. Now what do we expect from the nondisabled population? Due to the discrimination against and the segregation of persons with disabilities in our culture, finally seeing people with disabilities is brand new to most. If a typical child goes to school, or to college or to work with long and ragged fingernails, dirty teeth, greasy hair and is simply uncared-for-looking, what would the response to that child or adult be? We must go back to basics. Appearance counts. Until all of us come out of the closet and deal matter-of-factly with this issue, we are contributing to the backslide of the progress that has been made by the disability movement.

I think the responsibility lies with family, friends and professionals to teach the ways of mainstream society. People with disabilities have a history of feeling dirty, untouchable and unwanted. (Williams, 1992) This feeling will continue to be perpetuated unless there is an about-face.

This is a touchy subject. One of my co-workers told me that she felt compelled to say something to one of her friends who has cerebral palsy about the way she dressed. About her unbrushed teeth and infrequently washed hair. But she was afraid to do it. She was afraid that she'd be crossing a line, and intruding on some private space or be perceived as being anti-disability or insensitive. So she tried to look past it. Her friend never got the intimacy or quality of friendship because of that fear. Fear of being honest. Fear of sharing. Fear of intruding. Fear of hurting another person's feelings. These are indeed fears based in reality. Nobody really wants to hear some of these things. But we must be brave and try to share. We must not allow barriers of socially unacceptable behaviors and personal hygiene to prevent full inclusion.

Somehow we've missed the point. We have legislated toilet time, so what? Where is the class that teaches about the underpinnings of inclusion? Unfortunately, or fortunately, our society has well-known rules which all of us must reckon with. Again, when professionals, family and friends spend days and days with people and fail to address these issues, we are simply condoning their exclusion by our silence.

We must come forward and, with compassion, do unto others as we would have others do unto us. I know that if I were a child and depended on my parents or if I were an adult who relied on others to wash, dress and care for me, I'd want them to go all out and do it right. I'd want someone to lift a napkin to my lips, and offer to take me shopping for clothes. I'd want them to spend more time explaining the regulations of some law. I'd want to be able to hang out and have fun in my community. I'd want people to feel comfortable around me and want them to get to know me.

We in the disability movement are pushing forward. Let's do everything we can now to create a world of acceptance. Like it or not, appearance counts.

Legislative Update

Reauthorization of Rehabilitation Act

At the time of writing, the House Bill has been marked up and is due for action within the next month. The Senate draft bill is in its final stages and scheduled to be marked up on July 29, 1992. So far, both versions of the bill contain strong language mandating training for people with disabilities, parents and other family members. We must report to you, however, that keeping this language intact has been no easy task. At the time of writing, it appears secure. NPND will continue to be vigilant and protect these provisions from any future attempts to remove it.

By the time of publication, it is likely that both bills will have gone to Conference Committee and a final bill have merged. NPND will profile in detail the bill that emerges from the legislative process in the next issue of Networking.

IDEA

At the time of writing, NPND is pleased to highlight new language attached to Part H regulations that identifies parent-to-parent =support activities and parents providing as authorized services and "qualified" personnel respectively. This represents a major step forward by the Department of Education (]DOE) toward the validation of the value of parent-to-parent activities. NPND has, through formal comment, gone on record in support of these additions and urged the DOE to learn from the activities of parent-to-parent programs about how parents should be trained to give to and gain from the support of each other.

by Helen Reisner, I & R Specialist United Cerebral Palsy Associations
COPYRIGHT 1992 EP Global Communications, Inc.
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1992 Gale, Cengage Learning. All rights reserved.

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Title Annotation:Networking: Information from the National Parent Network on Disabilities
Author:Reisner, Helen
Publication:The Exceptional Parent
Date:Sep 1, 1992
Words:1246
Previous Article:Five steps to becoming your child's best advocate.
Next Article:She ain't broke!
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