Society vs the Wheelchair

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SPECIAL ARTICLE

Society

vs the Wheelchair

Rose Marie MacElman

Rose Marie became a patient of mine at the age

of 2#{189},just one month after I began practicing

pediLitrics in July of 1962. She had typical

child-hood illnesses and seemed otherwise normal until

March of 1965, when on her preschool physical

exam I picked up mild ataxia and a positive

Romberg’s sign. This showed slotv but steady

progression, so a year later I referred her to a

neurologLit. He felt she had a progressive

degener-ative cerebellar disease of unknown etiology. At

that time, her only probleims were an unsteady

gait and “shaky” handwriting. In 1971 her sLiter,

fi

Ue years younger, was noted to have an identical

disability.

By 1972, Rose Marie had EGG abnormalities

coiviistent with Friedreici, ‘s ataxia. By that time

she was confined to a wheelchair, had slurred

speech, and a progressive scoliosis. In five more

years she had developed diabetes mellitus (felt to

be unrelated), occasional choking spells, and

marked weakness and ataxia of her upper as well

as lower limbs, distally more than proximally. She

has absent deep tendon reflexes and loss of

position and vibratory sensation in the lower

limbs.

Despite her problems, Rose Marie is a B student

and a very personable young lady. In the spring of

1978, a few months before she was to graduate

f rom high school, I was sent a form from the state

vocational rehabilitation director regarding her

potential and prognosis. Although I felt I knew

Rose Marie as well as any of my patients, my

immediate reaction tvas, “Rehabilitation? For a

progressive neurologic disease with marked

dis-ability?” She was already aLio beingfollowed by a

neurologist, orthopedic surgeon, and physical

tlier-apist. Ifelt nothing more could be none to improve

her potential. To me, sending her to business

school

‘

seemed a “waste “ of taxpayers ‘ money,

especially if she continued to become weaker (her

f

ather had died from a heart condition several

years ago and her mother lived on social security

with help from her family).

Soon after my “sentence “ concerning

rehabili-tatwn was handed in, a sensitive visiting nurse,

who had been helping the family with Rose

Marie ‘s diabetes and general care, brought to my

office the following essay that Rose Marie had

typed for a school assignment. On reading the

essay, 1 was moved by Rose Marie ‘s capability

and enthusiasm. She does have the potential for

many years of useful life, and her aspirations

certainly deserve as much support as man’s

aspi-ration to reach Mars. I have been able to reverse

my original pronouncement, which I now view

with chagrin. Because of this articulate erpression

of Rose Marie’s own viewpoint, I have had to

reassess my own attitudes towards the handi-capped.

I would like to share Rose Marie ‘s “Society vs

the Wheelchair” with physicians caringfor young

people everywhere, hoping that others, who, like

myself, have had a “practical, “ hardline approach

to rehabilitation of the handicapped, may become

more sensitive to the desires of the handicapped to

be contributing members of society.

CHARLES E. BURDEN, M.D.

My name is Rose Marie MacElman. I’m a senior at Brunswick High School. I have been brought up in public life and not “hidden” as people did to so many of the handicapped in years past. Living in public life as I have, I can give you some of my first-hand experiences of how society treats the handicapped person.

My handicap is a disease called cerebellar ataxia. It is not a communicable disease. My parents noticed when I was 5#{189}years old that my coordination was not what it should be. At first

Received March 17; revision accepted for publication July

11, 1978.

ADDRESS FOR REPRINTS: (C.E.B.) 1 North Street, Bath,

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SPECIAL ARTICLE 577

the doctors thought the problem was in my feet, but after many series of tests and a brain wave

they found that the problem was not my feet at all

but the part of the brain that controls all

motiva-tion, the cerebellum. Gradually, I started getting weaker and weaker until at the age of 12 I found

myself relying totally on a wheelchair.

When I first went into the wheelchair I was

very shy and afraid of people. I didn’t want to be

the center of attention. I didn’t want people to notice me at all. Because of being so shy I didn’t have any friends my own age. My only friends were my family and close friends of the family who were a lot older than I.

When I got into the outside world I found that

people say and do things unintentionally. Some-times people will stare out of curiosity. Young children who don’t understand will ask, “Why are

you sitting in that chair?” and “Why can’t you

walk?” I explain to these young children that my

legs won’t walk. They accept this explanation

without further questioning.

I have two small cousins who at first were very scared of me. When they would come to visit they

wouldn’t get near me at all until we all sat down

together and my family explained to them that

there was no need to be frightened. I was just like them except I couldn’t walk and have to use my wheelchair to move around. Now they are not afraid, and they play with my wheelchair when I’m not in it.

In grammar school I had very few friends. Most of the children my own age didn’t understand my disability and thought I was odd, so most of my friends were limited to teachers and faculty. In

junior high school I had more friends because they

understood that I wasn’t that much different from them. Now that I am in high school it seems that everyone is my friend. They look for my person-ality rather than my handicap. Even still, there are a certain few who choose to ignore me completely.

Most of my friends have problems of their own.

My best friends enjoy my company and want me

to go places with them and participate in activi-ties that they enjoy.

I find teachers at school have many different views on how to instruct me in my studies. Some realize that I cannot work as fast or as accurately

as the other students, and they let me work on my

own and at my own pace. Others won’t accept the fact that I’m not able to keep up with the other students and ask me to drop the course rather than try and help me grasp what I can. I want so much for teachers to help me as much as they can because I am interested and I am willing to learn.

Some teachers smother me, and I feel that this is as bad as not bothering with me at all. They make me feel incapable. What they don’t seem to realize is that just because I am physically handi-capped doesn’t necessarily mean that I am mentally handicapped as well.

Adults who know me treat me with compassion and kindness, but they also realize that I don’t want to be treated like a special type of person or be treated like a child. They encourage me and make me feel like I have a chance like any other person despite my handicap.

When I go into shopping centers or restaurants, lots of people stare and ask questions, such as, “Did you injure your legs in an accident?” I hate

it when elderly people with canes and walkers stare at me. I feel more at ease when people care enough to stop and ask what my handicap is.

What embarrasses me most is when priests, nuns, or ministers stop and say a prayer or bless

me. In a way it makes me feel warm inside but it

embarrasses me.

I have found since there have been more facilities for the handicapped, society is accepting

us as normal individuals.

Pine Tree Camp [an Easter Seal facility in Maine] has been a part of my life for five years now. I go there for eight weeks every summer. I find camp life most enjoyable. About 100 handi-capped children and adults are able to enjoy the many activities there, such as swimming, nature hikes, arts, crafts, music, and drama. It gives each of us a chance to participate at his or her own level and to enjoy things that the walking world takes for granted.

J

ust recently, I was accepted at a business college. I am hoping this experience will broaden

my knowledge in business education, and some

day I would like to become an accountant.

So far I have talked about all the disadvantages of being handicapped; but it does have its advan-tages, too, such as not having to stand in lines, having people open doors for me, having people make way for me in crowded places, and being the first in a group to view exhibits.

Environmental barriers prevent many handi-capped people from gaining access to places of employment, transportational systems, private homes, schools, restaurants, shopping centers, and even bathroom facilities. Some people say, “We cannot change the whole structure of society just

for a few people.” Such people are concerned with the expense of installing elevators, ramps, enlarging bathrooms in public places, and making curb cuts in sidewalks. They may claim, “It’s their problem, so why should I do anything about it,

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and why should I pay for special services for them?”

The cost of altering environmental obstacles is not the only objection made. The nonhandi-capped majority is upset or depressed by the sight of the handicapped in public restaurants and other public places. They are likely to nudge their wife or husband and shake their head with

sorrowful eyes, while thinking or whispering

under their breath, “That poor thing.” Therefore, high curbs, stairs, narrow bathrooms (and bathrooms at the bottom of a set of stairs), revolving doors, and turnstiles serve not only to limit the freedom and mobility of handicapped persons but also to protect the public from seeing something they feel uncomfortable with.

When ramps or elevators are installed for the benefit of handicapped individuals, they are

usually in such buildings as hospitals, clinics, and

service institutions. For example, two years ago on the University of Kansas campus, a new geologic center was built to honor a famous scientist, Dr. Moore. On the day that the building was to be dedicated, Dr. Moore, who happened to be in a wheelchair, had to use the service entrance to get into his own building. Why? Well, no one thought that a person in a wheelchair

would ever need to use a university building.

Even in hospitals there are often stairs in the

business offices and research laboratories.

There-fore, handicapped people can go to a hospital or a doctor but they cannot be the secretaries or the scientists.

Ramps and curb cuts do not benefit only people in wheelchairs. After the University of Kansas installed curb cuts in the sidewalks and parking

lots, the students and staff were asked why they

thought the curb cuts were needed. Ninety percent of the students thought the curb cuts were built for the bicycle riders on campus. The delivery men thought curb cuts were there to help them move their paper towels and cases of pop bottles in and out of buildings. The people in charge of the physical plant thought they were built to help them move their gardening and snow removal equipment up and down the sidewalks. Thus, many groups benefited from the curb cuts.

Many handicapped children and adults feel frustrated and helpless in public places with the countless stairs and the endless stares. Many stay within their own homes to avoid the hassles. They

may have accepted their handicapped, but the

point is that others have not. Handicapped mdi-viduals must not give in to the negative

stereo-types and negative expectations of others. They

must maintain positive self-esteem. They must

demand entrance to public places because they are entitled to it. Many have the ability to work, to teach in a public school system, to enjoy movies and recreational facilities, and to do all the things that other people can do. The only problem is that people with handicaps are denied the right to participate in many activities because the envi-ronment does not allow them access.

When handicapped people do go into the outside world, they are often seen as totally helpless. The clerks in stores or waitresses in restaurants often ask the other person with me (the person pushing the wheelchair), “What would she like?” or “What is her size?” or “Would she like to order?” or “Can I help her?” Being in a wheelchair does not mean that I cannot speak for myself and that I should be treated like a child. Handicapped people rarely need inter-preters; questions should be addressed directly to them.

I must emphasize that I am speaking not only for myself. Of the more than 220 million people in the United States, 30 million are disabled in one

way or another. Many are unemployed, restricted

from recreational activities, and confined to their homes. There has been some progress in services and attitudes toward the handicapped in recent

years. Many medical and technologic discoveries

have aided handicapped people, such as special typewriters, elaborate hearing equipment, auto-mobiles driven only by manual controls, and electric wheelchairs. Also, recent legislation states that children with handicaps must be integrated into the public school system. There are efforts being made to hire the handicapped across the entire country. In addition, any public building being built with federal funds must include ramps or elevators so that wheelchairs can enter easily.

Nevertheless, much still needs to be done to educate the public in regard to the handicapped and to change their fearful attitudes. One way in which attitudes are being changed is through the Miss Wheelchair America Pageant. Beverly Chapman of Florida was chosen to be Miss Wheelchair America of 1977. She tours the entire country in a van with the help of others and makes speeches and public appearances to stimu-late public interest and concern about the many,

everyday problems faced by users of wheelchairs.

She attempts to help “close the gap” between the wheelchair world and the walking world. The Miss Wheelchair America Pageant has grown rapidly each year. Last year there were entrants from 30 states, and next year they hope to have representatives from every state in the country.

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SPECIAL ARTICLE

579

other children understand handicapped children. Perhaps children can, in turn, teach their parents. A project in Massachusetts works with teachers, children, parents, nurses, and others to do away with the prejudices surrounding handicapped children. They encourage young children to talk openly about handicapped people they know and

to invite people (both children and adults) with

handicaps to visit their classroom, talk with them, and let them experiment with hearing aids, crutches, and wheelchairs. One little girl brought to class her infant brother, who had suffered birth injuries. She proudly described the attempts of her family to help him. As her classmates became aware of the amount of time she devoted to her brother, they became more understanding of why she was unable to play at times. The children who participated in frustrating experiments (ie, going to the school bathroom in a wheelchair when the halls were crowded) became more sensitive to the difficulties of those with a handicap. The frustra-tion of a blind person can be experienced by putting on a blindfold and then trying to eat a snack or drink water from a water fountain. Field trips to rehabilitation centers and special schools also can help to do away with negative

stereo-types. The children involved in the program in

Massachusetts became more curious, concerned, accepting, and comforting of others with handi-caps. Most importantly, they learned that people with handicaps have feelings, likes, and dislikes similar to their own.

In conclusion, there are many ways in which attitudes of the public toward the handicapped can be changed, and the negative attitudes that

exist must be changed. Environmental obstacles

also must be changed. Not only will the 30 million handicapped benefit from positive change but the nonhandicapped majority will benefit as well. In personal terms this can be expressed as follows: I am anxious to be able to go into stores, restau-rants, movie houses, and bathrooms freely and to do so without stares and condescending looks of others. Others will learn and benefit from my being able to do so, because I, Rose Marie MacElman, have much to offer.

BIBLIOGRAPHY

Cleary M: Helping children understand the child with

special needs. Children 12:6-10, July/August 1965.

Cohen 5: Integrating children with handicaps into early

childhood educational programs. Child Today 4:15-17, January/February 1975.

Gentile F: Getting unstuck. I Reliahil 43:29-30, November!

December 1977.

Harris R, Harris C: A new perspective Ofl the pychological effects of environmental barriers. Rehabil Lit 38:75-78, March 1977.

Nelson D: The ladies room: An experience in personal

rehabilitation. JRehabil 43:15-16, September/October 1977.

Rehabilitation news. I Reliabil 43:4-5, January/February!

March/April 1977.

PRACTICAL TOPICS IN PEDIATRIC GASTROENTEROLOGY AND NUTRITION

A course on Practical Topics in Pediatric Gastroenterology and Nutrition is scheduled for June 18-20, 1979, at the Holiday Inn, Golden Gateway on Van

Ness Avenue in San Francisco. For more information write or call Extended

Programs in Medical Education, University of California, Room 569 U, San Francisco, CA 94143, (415) 666-4251. This program is sponsored by Extended Programs in Medical Education of the University of California School of Medicine in San Francisco.

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