MIRACLES HOME AND RESEARCH TRUST in association with ASTALAVISTA TECHNOLOGIES and MOTHER AND CHILD WELFARE AND RESEARCH FOUNDATION INDIA, is a NON-PROFIT secular organization, with RESIDENTIAL FACILITIES, Fully Equipped with the Pre school and School Session, providing Education and Training to all kinds of CHILDREN and ADULTS with Behavior Problems and Multiple Disabilities like Autism, Slow Learners, Aspergers, ADHD, Mental Retardation, Down Syndrome, Cerebral Palsy, Hearing, Speech and Visual Impairment, etc.
An individual with a disability may have learned to cope well with the problems caused by the disability if help is needed it may be due to other problems from other sources.
As mentioned above, it is often not the disability itself which causes the greatest problems but the environment, the attitudes of others toward the disability, or the lack of appropriate support services available, such as housing or transportation.
Definition - Once More
Throughout this Handbook, I have kept in mind two definitions as suggested in Schuster and Ashburn (1986), regarding the use of the word "disability":
A disability can be defined as an inability to perform a certain task. Some individuals cannot walk, some cannot talk, some cannot see--and there are tasks associated with each ability that those individuals cannot perform. (p. 383)
and concerning the use of the word "handicapped":
A handicap is not so easily defined; poverty can be handicap, lack of education can be a handicap. Handicaps have more to do with the environment than the individual. In an adjusted environment a person with a disability has no handicap. (p. 383)
easily defined; poverty can education can also he a have more to do with the individual. In an adjusted with a disability has no
These definitions are somewhat interchangeable, and for the sake of not repeating the same word over and over again, one is often used in place of the other. Yet, there is much truth to the two definitions which help define our attitude toward disability. As an illustration, I can readily relate to the difference between a disability and a handicap when I am in my own kitchen versus when I am in someone else's kitchen.
My own kitchen is somewhat redesigned, with lowered counters, drawers easily opened and everything within easy reach. In my own kitchen I can cook, clean, and get myself a glass of water. In someone else's kitchen, the cupboards are above my level, the taps are unreachable and everything is in a cupboard out of my reach. I am not "handicapped" in my kitchen, despite my disability, but become very handicapped in an environment in which I cannot function.
Attitudes and Psychological Behavior
Rick Hansen, after his travels across several continents, summed it up in this sentence; "Your attitude to my disability is my handicap!"
Attitude and the use of language which reflects our attitudes may be a bigger burden than the individual's physical disability. This section will discuss some of the negative attitudes held by individuals towards people with disabilities, much of which is formed by misconceptions and misinformation about specific disabilities and their effects on the human body and mind. Anyone who will be dealing with an individual with a disability must first come to understand what their own attitude towards disability is, where it came from and how to deal with the attitude in a more positive manner.
Language reflects how we think, and the use of language has effect on attitude; in this paper I have made every effort to reflect a positive image of disability. The phrase "person with a disability" focuses on the person, first, who has a disability second. Phrases like "confined to a wheelchair" seem negative beside "uses a wheelchair for mobility", and the wholesale term "the disabled" is much less personal and individual than "people who have disabilities". The use of the more positive and personal description reflects our concern with the person (Saskatchewan Public Service Commission, undated).
Composition of Attitude
Attitudes may be thought of as positive or negative emotional reactions to an object, accompanied by specific beliefs (Lombana, 1982). People hold many attitudes toward a wide range of topics, in varying intensities. The strength of the attitude often depends on early learning experiences, available factual information, influence of significant others and the beliefs of the larger community.
Less than a decade ago, researchers were concluding "that more than 504 of the people surveyed express slightly positive attitudes toward disabled people" and "research demonstrates generally negative and stereotypical attitudes from the general public toward the disabled" (Lomhana, 19S2, p. 52).
Since then, individuals like Terry Fox and Rick Hansen have positively affected the world view of what persons with disabilities can accomplish. As well, the media and government have paid attention, generally, to language used to describe the person with a disability (Saskatchewan Public Service Commission, undated).
Such changes have come about through the efforts of the disabled themselves; legislation concerning education and employment also has effect on the behavior of the system.
The general view of the person with a disability is less intelligent, less happy, less likable than a "normal" person (Vash, 1975). Such negative attitudes are usually based on myth, false assumptions and stereotypes. Stereotypical views of people with disabilities are that the person is different, which contributes to social isolation.
Effect of Attitude on Self Concept
Self concept is created largely through our interaction with others. The feedback we receive from those with whom we interact give us a picture of ourselves as cheerful, shy, friendly, etc. Some of this feedback comes from the non-verbal messages we receive, such as facial expression, and body language. Society' expectations of us shape our behavior. Many individuals with disabilities learn early in life that they have a negative role in this society. They have received negative feedback about their worth, both verbally and non-verbally. Their response is often passivity, rigid thinking, and failure to take part in life -- because the expectations placed on the
individual with a disability are negative (Seligman, 1975).
Negative attitude can be more debilitating and damaging to a person than the physical disability itself. School aged youth, who are involved in the development of self identity, learning social skills as well as academic growth are most susceptible to devaluation by their peers and adults around them.
When a child's interaction is limited to their family that experience may be supportive and non-threatening. Because the environment has been supportive, they may not perceive themselves as disabled; as the child's world grows larger, the generally negative attitude that society holds towards disability has its effect on the individual.
Rejection by peers has a profound negative effect on self confidence and self esteem. Avoidance by peers and teachers, coupled with lowered expectations by adults about them all hamper motivation to achieve and participate.
The first and major influence on the child is the family, the next most important environment is school. When the child with a disability enters the regular classroom, it may be their first non-family contact, as well as their first experience in a non-special classroom filled with able bodied peers.
The initial response, on both sides, may be apprehension due to an unfamiliar situation. Students with disabilities may be isolated or rejection by their peers, and in general, the more visible the handicap, the more rejection and isolation (Lomhana, 19B2) Because children are generally concerned with physical skills and activities, perhaps being unable to take part means, to the student's pears, that the child is incapable of any activity (Erikson, 1960).
The effect of teacher attitude has been well studied, but the effect of counselor attitude has received less attention (Lomhana, 1982) We know from research that teacher attitude has considerable impact on students; eye contact and conscious or unconscious positive reinforcement all effect how students respond. The expectation of the teacher has positive or negative effect on the student; the child with a disability is no different in their responses to their teacher. If a teacher has fears, holds stereotypes about disability, or has lowered expectations of a student who has a disability, these are conveyed to the student, who responds with apathy, lowered self-expectations and a feeling of helplessness.
Thirty years ago, handicapped individuals in a regular school system were viewed as different and unable to meet regular goals in school (Meisel, 19S6). Rules, then, were changed for the person with a disability. The advent of the '60s and '70s saw less emphasis on special education, especially separate education, and the beginning of legislation regarding mainstreaming physically disabled children into regular school.
Simply legislating the rights of handicapped individuals to receive education alongside their able bodied peers does not take care of the problems which plague regular classroom teachers. Lack of preparation time, overcrowded classes and inadequate time schedules are problems for all teachers, but the addition of a student with a disability into the classroom intensifies the problems with time and discipline all teachers have.
Regular classroom teachers, unlike special education teachers, rarely have exposure to students with disabilities. Any introduction to disabilities may have been through texts which present stereotypical views of disabilities as "problems" (Hill, 1988). The text may focus on low intellect, low achievement and disruptive behavior of special students with disabilities; such labeling and stereotyping may lead regular teachers to believe that students with disabilities will be difficult to teach (Meisel, 1986). This may result in lowered expectations in many areas, including social skills. If a student has been previously labeled, reduced expectations may be the result.
When a teacher is faced with a student with a disability, that teacher must have a willingness to accept such a student into their classroom (center & Ward, 1987). Teacher's educational backgrounds and knowledge about disabilities is a factor in development of positive attitudes. In-service training to develop teacher skills are seen by regular classroom teachers as useful, and in-service training has a positive impact on attitude change (Hill, 1988; Saskatchewan Teachers' Federation, 1986).
Counselor attitudes to Disability
We can assume that counselors and teachers, like other humans, have both negative and positive attitudes towards disability, and have had both negative and positive experiences. A counselor or teacher who will be dealing with students with disabilities must examine their attitudes closely prior to contact. Honorable intentions to help will be useless if the unspoken attitude is negative, or one of pity or dismay. The unspoken attitude is more likely to be conveyed clearly through body language, actions and non-verbal communication (Nathanson, 1979).
The job of teaching positive attitude to a student's peers cannot leave the counselor or teacher unaffected. If a teacher or counselor is gathering together accurate information about specific disabilities, they come to know more and more about how negative attitude affects the person with the disability. In fact, any school personnel who deals with a student with a disability can be perceived as a role model for all students and the task of a role model is a serious one.
Attitude is a major factor in dealing successfully with a student with a disability (Lombana, 1982). Not only must the counselor or teacher come to terms with their personal attitude toward disability, but they must also foster a positive environment which would allow change in negative attitude. This may be done by direct intervention through programming, workshops and in-servicing of fellow professionals. Such programs and in-services would focus on overcoming negative attitudes and may be presented to the student's peers, teachers, counselors, administrators and school support staff (Nathansorl, 1979).
Making Attitude Changes
Two general means of changing negative attitudes according to Lomhana (1982) are contact with persons with disabilities and the dissemination of accurate information about specific disabilities
Interaction between persons who have disabilities and non-disabled people is vital to reverse the strongly entrenched social stereotypes. The differences are minimized when disabled and able bodied people interact; anxiety and fears on both sides lessen. Exposure through such organized events as panel discussion with panelists who are disabled but active and independent can do much to educate the able bodied about the day to day barriers faced by persons with disabilities. Contact is most effective when prolonged and on a personal, interactive level. A creative counselor or teacher can find many well designed programs available through the school system to foster positive contact, or can approach individuals and associations in the community to help them do so.
Accurate, clear information about specific disabilities can decrease anxiety and increase awareness. Teachers and counselors may become less fearful of dealing with disabilities when supported by access to accurate information. Myths and misinformation can be dispelled and confidence can be fostered. Personal information about the experience of the person with a disability can also point out that human problems are all the same and that people with disabilities and able bodied people are more alike than different (Vash, 1975). Adolescent and adult literature written about or by persons with disability can be used as a resource to educate and change attitude.
Contact Plus Information
To foster the most positive environment for changing negative attitude to positive, a combination of contact and information is best. A program or in-service which includes information plus personal contact with persons with disability, such as a speaker or a visit by a person with a disability, makes for a lasting change of attitude.
Counselor Role in Attitude Change
It is often the school counselor's job to provide in-service training and information about disability attitudes and resources for the classroom teacher (Saskatchewan Teachers' Federation, 1986). If the classroom teachers feel competent and well supported, they may be more willing to accept students with disabilities and have a more positive attitude toward disability in general (Meisel, 1986).
Attitudes are complex. because of the influence that attitudes have on the individual, counselors as well as teachers need to be ready to foster positive attitudes toward persons with disabilities.
In an ideal society, all would accept one another despite differences; but we are not yet in an ideal society. Negative attitudes exist, and are often thoughtlessly promoted and expressed. They have a profound effect on the individual. Some attitudes which are negative are often not overly expressed, but are evident in negative behavior. It is often the action rather than the word which carries the message.
Counselors, teachers, and other educational support personnel need to understand and come to terms with their own attitudes regarding disability. To be able to deal effectively with persons with disabilities, the counselor and teacher needs to realize that their attitudes will come through to the student with a disability in both verbal and non-verbal ways. Teachers and counselors need to have a clear understanding of various disabilities, what the effect of the disability may have on the person, and at the same time know that individuals with disabilities have common human needs and are more alike than different.
As well as understanding and coming to terms with their own personal attitude, the effective counselor and teacher must have an understanding of how individuals with disabilities, and their families, cope with life with a handicap.
Myths and Misconceptions
All humans have basic needs of security, affection, belonging and achievement. There are two myths surrounding disability that most counselors, teachers and the general public have come to believe. The first myth is that the existence of a disability makes the person with the disability different from able bodied people. The second myth is that having a disability makes all persons with disabilities the same (Lombana, 1982). Neither is true, though there are certain differences in how people cope with the environment when a disability is present, and there are certainty common experiences among people who have similar disabilities. To counsel persons with disabilities and be helpful, teachers and school counselors will have to identify the true counseling needs of students with disabilities.
Many persons with disabilities successfully come to terms with the disability, particularly those with conditions which began at birth (Lombana, 1982). Their counseling needs will center around normal developmental concerns which students in their age group may normally have. Other students with disabilities may have issues which are generated because of the presence of a disability, such as issues about body image, self concept and attitudes of others towards them. They may have family problems due to the disability which are more 'debilitating' than the physical handicap.
Personal Adjustment to Disability
Personal adjustment to disability is closely linked to the reactions of the student's parents, family members and society at large. Adjustment and acceptance to disability is affected by the way society adjusts and accepts the person who has a disability.
Part - Not the Whole
The person with a disability needs to see the disability as a part of them, not the whole. Handicapping conditions can overwhelm the entire self concept; when this happens, the person often develops unnecessary psychological dependence on others, feelings of depression, loss of motivation, and a feeling of powerlessness. The disability becomes the focus of the individual's life, their whole identity. The disability becomes the reason they cannot achieve, are not loved, do not belong. The focus of counseling may be, in this case, to help the individual identify all the other things they are, their strengths, and take the emphasis off the disability.
Ignoring the Disability
At the other end of the Spectrum from the disability being the total focus of the person's life, the individual may deny the existence of the disability. They desire to he "just like everyone else". Plans and dreams are made without taking into account the effect of the disability. No coping strategies can be developed if the disability is denied, and constant failures to accomplish what has been planned lead to frustration, anger and unnecessary problems and delays. The individual who denies the existence of a disability, or denies the severity of it often places themselves in situations which are destined for failure. The focus of counseling in this case may be to help the individual find their true limitations and match their interests and skills with ability.
Coping or Not?
When does the counselor know that an individual is coping well with a disability? There are some positive signs that tell a counselor whether or not an individual is coping positively with life, according to Roesseler and Bolton (1978), in their text "Psychosocial Adjustment to Disability".
Signs of Coping
1. The individual's values enlarge to encompass more than their personal disability and its effect on them.
2. The effects of the disability are contained and the individual is open to learning new skills to help overcome their limitations.
3. The disability is seen as an inconvenience, and is not seen as devaluing the person's worth.
4. Other values are more important than physical perfection; kindness, wisdom, effort are seen as important.
5. The individual realizes that not all life is determined by disability.
6. Individuals stop comparing themselves with outside sources and look to inward assets and begin to develop them
Counselors and teachers who deal with individuals with disabilities should also be sensitive to signs that a person is not coping positively with their disability. Any individual with a disability, considering all that they may have to deal with on a daily basis, may on occasion succumb to feeling of being overwhelmed and cannot cope for a short period of time. Some individuals may be completely overcome by the feeling of not being able to cope, and there are some signals which suggest that the individual is not coping well.
Signs of Not Coping
l. Individuals act as if the disability did not exist, and no effort is made to accommodate for the disability.
2. Normal standards are idolized.
3. What an individual can accomplish, what they physically can do, is ignored. New skills are not accepted as valuable.
4. Deficiencies are compensated for by exaggerated striving. This puts extra stress on the individual to overachieve in some specific area -- and this is often encouraged and praised by adults as being good (Wright, 1960).
A young lady with severe multiple disabilities, and her mother, were referred to social services for counseling. Mom despondently complained about dealing with various "experts" whose opinions and advice were always at odds and never very helpful. As a person with a disability too, I commiserated with her about "expert advice"!
I realized she was looking at me very strangely -- it came to me -- she viewed me as one of the experts and not as a fellow "victim".
My reality is that I am a person with a disability who has suffered from "expert" opinions. Somewhere along the way I began to look like an expert.
My hope is to keep my perspective and understand the experience of the individual who has a disability instead of distancing myself with "expert opinions" from the reality of living day to day with a handicap.
They're All the Same - Aren't They".
The results of numerous studies reviewed by Roessler and Bolton (1978) suggest that there is no "personality of disability". Vash (1975), a psychologist who herself is severely disabled, agrees. The teacher or counselor cannot expect all persons with disabilities to be similar, nor can they expect people with certain disabilities to exhibit certain personality traits. Labeling and stereotyping of persons with disabilities by the medical profession and other professionals for the sake of convenience has generally led to the acceptance of the belief that certain disabilities go along with certain personality types. Rather, Roessler id Bolton (1978) suggest that the following has shown to be true:
1. Specific disabilities are not associated with certain personality types.
2. The degree or severity of a disability does not relate to the degree of psychological adjustment -an individual with a minor disability may be less able to cope with its effects than a severely disabled person.
3. There are a wide range of individual reactions -- two persons with very similar disabilities may react altogether differently.
Counselor Role in Personal Adjustment
Counselors and teachers can he supportive to the individual as the person with a disability evaluates themselves. Counselors can challenge the student at the appropriate developmental level and teachers can provide success oriented training. The most important thing to remember is that the person is an individual and that needs are individual. Buscaglia (1973) stresses that the professional needs to keep constantly in mind that each person is unique, that persons with disabilities are people first and disabled second. One of the most difficult thoughts to keep in mind is that the person with a disability has human needs and has a right to choose wrongly, a right to fail and a right to suffer (Buscaglia, 1973).
Right to Choose
Like all human beings, people with disabilities have the right to decide what is right for them, and when the environment is supportive they also may have their own manner of doing things. This idea may cause friction between the individual and the helpers when the non-disabled feels the need to impose their ways of functioning on the person with the disability. Counselors and teachers must be ready to broaden their view of how things are done and be ready to accept the individual's way of accomplishing the task.
Counselors, teachers and parents are more effective when they remember that the individual with a disability also has the right to honest information about their condition, about their ability to do and achieve. False praise, false hope and false dreams may do more damage than good. Honesty about the disability and its effects does more than pretense about what the disability is and what its limitations may be.
Implicit in all counseling is the belief that the individual has the right and ability to determine the course of their life (Lomhana, 1982). The counselor or teacher must have respect for the individual's feelings and allow them responsibility for their own actions. Fostering independence rather than dependence is the key to the individual's success as they take part in living their life.
Factors Affected by Disability
As discussed previously, there is a lack of evidence that there is a personality type related to disability (Vash, 1975), but Disability does have an impact on the personality. These differences may separate students with disabilities from their able bodied peers (Lombana, 1982).
Students with physical handicaps may be generally less mature than non-handicapped students. This may be due to social isolation and opportunity to interact with peers of the same age (Meisel, 1986). Relationships
Persons with disabilities may have more problems establishing social relationships. This may be due to social isolation as well, but may also be affected by society's view of what qualities a person should have (Lomhana, 1982).
Children with disabilities experience greater anxiety, conflict and defensiveness, and may he more inhibited than non-handicapped children. This, in part, may be due to their experience with negative attitudes of peers and significant others (Meisel, 1986).
Knowing about specific disabilities is important for the counselor or teacher since characteristics of specific disabilities can limit a person's physical or academic ability, and directly effect the individual's self concept and body image. Some general assumptions may be made about specific disabilities, which can serve as a starting point to counseling. Identifying such things as methods of positive or negative coping skills may help the counselor, but it is best to keep in mind that it is the existence of the disability which has the greater impact than the type or severity of the physical involvement.
A problem which counselors and teachers should be alerted to is the possibility that the individual with a disability is overcome with a feeling of helplessness. This syndrome is a theory of Martin Seligman (1975). Seligman's basic theory is that the experience of not being able to control the environment, or learning that events are uncontrollable, leads to a psychological state of helplessness, which may not be related to the real ability of the individual. If a person comes to believe that his or her actions will not affect the environment, the likelihood that they will even attempt a response decreases, and the attitude will become "Why bother? It won't make any difference what I do." If actions have no effect, the next logical step is to cease all action.
If a child learns early in life that outcomes are independent of their response or request, they stop responding and it is difficult in later life to attempt
to control situations. The syndrome of learned helplessness has effect on cognitive growth and may cause effective disturbances -- the child may seem non-responsive, uninterested in life around them and dull.
The feeling of helplessness is self perpetuating. Anxiety, frustration or fear is the result. If the feelings of no control persist, depression may be the end result. Learned helplessness undermines motivation and retards the ability to perceive success (Seligman, 1975).
Seligman believes that motivation and emotion are influenced by environment. A child whose environment does not respond to their needs comes to believe in their own helplessness. Being helpless in one situation leads to the feeling of helplessness in another situation -- feelings of learned helplessness are frequently transferred to other settings.
This learned helplessness has behaviors which a counselor or teacher may observe. Individuals, and their families, may have been in countless situations in which they have no choices, in which their desires have no effect on the outcome. As a result, they have learned to react with helplessness and this may transfer to situations in which decisions must be made or action must be taken.
Symptoms of Learned Helplessness.
1. Few voluntary responses, only answers to direct inquiries.
2. Negative thinking and difficulty learning how to act to effect the outcome.
3. Passivity in all situations.
4. Increase of all of the above over time.
5. Depressed appetite, sexual interest, less socialization, lack of self care, no desire to put out any energy.
6. Physiological changes such as weight loss or gain. Seligman (1975) feels that learned helplessness has its roots in infant development for the child with a disability. When an infant's environment responds, the child has a sense of mastery The helplessness syndrome can result from separation from mother, from stimulus deprivation due to isolation, or from a combination of these things. Individuals experiencing reactions to grief and loss may also exhibit symptoms of the helplessness syndrome.
To overcome the feelings of helplessness, children need warning clues about coming events, such as physically painful treatments, or parent's departure. The child needs to predict events; children can deal with unpleasant events and cope better if they are given a warning and an honest explanation.
What a counselor or teacher may interpret as apathy on the part of the student with a disability may be more attributed to the helplessness syndrome; what may seem like an inability to learn may be the effect of this syndrome as well.
Though development is effected by disability at each age, adolescents and their families have some special additional problems. Adolescence is the time when individuals are attempting to gain their independence from family and establish their future identity (Havinghurst, 1972, cited in Rice 1990).
Disability as an Excuse
An adolescent may come to use their disability as an excuse to avoid social contact and school. They may become ashamed of their disability, ashamed of being different. They may retreat into a world of home, hospital, or other safe institutions. They may even refuse medication or treatment to bring about a health crisis, so they may regain their safe haven through hospitalization. Physiotherapy may be refused as well, because of its focus on the disability. This is often done to avoid the critical stares of peers, the questions or comments about the disability (Kleinberg, 1982).
Attitudes of Others
The opinion of others is important to adolescents. They form their view of self through comments and attitudes of others. The differences of having a disability, using a wheelchair, having problems of muscle control, often stigmatizes the individual, giving rise to feelings of shame (Lomhana, 1972). The move from a neighborhood school into a less personal selling of high school can be a devastating experience. Teachers, counselors, school support staff and parents can help the young adolescent make the transition with support, encouragement and care.
Older adolescents may need special attention, helping them find out about themselves, their disability and what they can rather than can't do.
An adolescent will develop various and personally individual methods of coping with the attitudes of others and their own acceptance or nonacceptance of their disability. Defense mechanisms, methods of making reality more bearable, may include:
Depression (Kleinberg, 1982)
Adolescents who are physically disabled may use denial as a protection against the devastating emotional effects of disability. Spinal cord injured individuals may refuse to believe that their condition is permanent and refuse to deal with the reality of the paralysis. At this stage, they may refuse to do daily self care, refuse physical treatments.
Denial can be a mechanism of escape -- escaping the fear of death or disfigurement. Denial may be, at times, an effective and necessary coping strategy. Care should be taken when asking an individual to face reality (Kleinberg, 1982). Too soon or too blunt an approach may leave an individual unable to cope with reality "all at once". Rather, strategies which introduce the reality of situation gently may allow for adjustment and gradual acceptance (Appendix V). Testing Limits
The Stage of adolescence is the time of testing of the limit of abilities, as well as limits set by parent and schools.
The adolescent with a disability may carry this time of testing to the extreme. The individual may attempt things which are impossible and even put themselves in danger. They may refuse medications or supportive medical treatments and actively challenge decisions made by parents.
Adolescents with a disability may have unexpressed anger and rage at their situation and may act out physically or verbally to teachers, parents, peers or siblings. They may resort to sarcasm and name calling; their rage at their own helplessness and their embarrassment at being disabled and different may be expressed in verbal or physical abuse of others (Lombana, 1982).
Pain due to disability, dependency on others for daily living tasks, and the obvious physical differences due to disability may combine to make an adolescent with a disability use regression as a coping strategy. It may he easier to retreat to an earlier age than struggle with interdependence. The individual with a disability may lack social skills, and not be used to risk taking; they may seek to be cared for and accept many parents' attempts to keep them dependent and "secure".
The normal adolescent at this stage is achieving more physical and emotional independence from parents; the physically disabled adolescent may be struggling to achieve emotional independence while needing physical dependence (Buscaglia, 1975).
Parents play an immeasurably important role in helping the physically disabled adolescent achieve a realistic, healthy balance between physical dependency and emotional independence.
Choosing to drop out of school or enter into a very restricted but secure environment, such as a special school or sheltered workshop, may allow an individual a way of withdrawing which is acceptable. They may have little interest in anything, little energy to do even simple, daily routines.
Parents and teachers may accept or even encourage this to protect the individual from stigmatization, feeling that it would be cruel to allow the individual to be faced with a challenge they may fail.
Times of mild depression may not be uncommon during adolescence. An individual with a disability may have bouts of severe depression (Travis, 1976 as cited in Kleinberg, 1982).
While focusing on the plans for the future, adolescents may suffer from feelings of loss, and need a time to grieve for a loss of a 'normal future'.
Long term depression, including resignation and apathy, may require professional intervention. The individual may speak of suicide. Such threats should be taken seriously. Pat responses such as "you'll get over it", "it's not so bad", "you're not as bad off as some" are not helpful or realistic. The truth is that the disability exists, and it causes problems for the individual, it won't go away. Rather than platitudes, adolescents need alternate coping strategies.
The opposite of challenging behavior, depressive behavior, may occur. Adolescents with a severe disability may feel hopeless and refuse all outside help. The loneliness, boredom and isolation associated with disability may lead to substance abuse, to help them escape a seemingly hopeless reality. Drug abuse may be easy, as the availability of pain medication or anxiety-lessening drugs may be high through prescription misuse.
C.F. 28, O.I.. Presently an office worker
"Teachers seemed intimidated by me. No one cared whether or not I learned anything, it didn't seem to matter to them."
"Teachers should expect students with disabilities to do just as well as everyone else. I think some people think disabled people won't amount to much, so why bother!"
"All I want is to fit into the mainstream of society ... so don't tell me I'm special n
The stage of adolescent is the stage when planning for future in career, education and life is a focus (Havinghurst, 1972 in Rice, 1990). Choices may be limited by the extent of the disability. The personality, interests and abilities of the individual affect choices, as well as the disability.
The reality of the world of work is that those with disabilities face many barriers - actual physical barriers as well as attitudinal barriers. The individuals with disabilities -- even those with mild disabilities -- face discrimination on the job market.
There is a need for realistic goal selling and vocational guidance for individuals with disabilities.
As an adolescent reaches young adulthood, issues of career, marriage and independent living become important. Some individuals may never achieve total physical independence but should be encouraged to look to emotional independence and realistic goals -- and to make their own decisions as to the course of their lives.
Infancy and early childhood are less of a problem in terms of sexuality identity than the advent of puberty and adolescence.
The development of secondary sexual characteristics in puberty draws attention to the fact that an individual is no longer a child (Schuster & Ashburn, 1984). Puberty is the beginning of the time when the individual becomes very interested in bodily changes and their body image.
For the most part, sexual maturation comes about for both the individual who is disabled and the individual who is able bodied.
Problems arise when adults delay sexual education, out of a tendency to treat their maturing child as the dependent infant they once were (Bleck, 1979).
The individual with a physical disability may be more closely supervised than an able bodied individual. This constant observation may delay or prevent the experience of self and other body exploration. An even greater problem may be the lack of peer interaction -a most important method of sexual exploration during adolescence.
Erikson (1966) identifies adolescence as a time of experimentation. Adolescents with physical handicaps are limited in opportunities for experimentation, and may have lower self esteem about sex and sexuality (Schuster & Ashburn, 1984).
B.L. 23. C.P. and Epilepsy. Presently in computer training.
"Making friends was easy because of my own personality. The hard part was getting a girl friend. I didn't date in high school because I was dependent on my mom for too many things. I had to move to a group home when she got sick, and really that vas a very good thing for me."
Parents often over-protect their child with a physical disability especially about sexual concerns (Kleinberg, 1982). These needs may be unrecognized or even denied by parents who focus more on physical daily care.
What Can A Counselor Do? Discussion of Sexuality
Frank and open discussion of sexuality is difficult in our society, but especially so for individuals with a disability.
There are many stereotypes about disability and many myths about the sexuality of persons with disability. There is an unspoken cultural belief that "the right to be sexual is reserved for young, physically flawless people" (Torn, Cray, R Kern, cited in Rehabilitation Literature, 1983).
The myth that an individual who is disabled is not sexual makes it comfortable for others to deal with that individual.
The adolescent with a physical disability has the same sexual needs as an able bodied person -- and the same rights. Teachers, parents and support personnel are among those who may help the individual achieve a sexual identity or squelch this powerful source of human interaction through active disapproval or passive unwillingness to discuss sexual matters openly (Gray & Kern, 1988).
Counseling About Sexuality
In the school setting, counselors or teachers will probably be working with either one individual or with a group receiving sexuality education.
The "problem" which brings an individual to counseling may not initially seem to be related to an issue of sexuality. The identified problem may range from severe acting out and inappropriate sexual behavior to quiet withdrawal or depression.
The empathetic and open minded counselor will allow and encourage the individual student to find a way to uncover the root of their problem. The counselor may see such behavior by the individual student as:
inappropriate sexual talk or jokes
aggressive sexual behavior
inability to function normally around persons of the opposite sex
obsessive sexual thoughts
fear of male teachers on the part of female
fear of sexual molestation
Parents may express these fears as well, especially for females, and develop a desire to overprotect their children from all sexual or perceived sexual contact or conduct.
Issues of Sexuality
In the text Treating Families with Special Needs (Freeman R Trute, 1986), it is suggested that sex counseling may be categorized into the following areas:
Developmental problems arising from ignorance of sexual norms for adolescence.
Health Related Problems arising from sexual self image affected by physical impairment.
Gender Ro1e Related Problems arising from gender
Role stereotyping (men are aggressive, women passive).
Life Style Problems arising from expectations not being met.
Reproduction Problems related to birth control use.
Sexual Trauma Problems arising from traumatic sexual experiences such as sexual assault or sexual harassment.
Sexual Orientation Problems involving confusion about sexual orientation.
Sexual Obsessions which are repetitive and problematic for the individual.
An individual may have one or several problem areas. The counselor who deals with the individual's sexuality concerns needs to be well versed, open minded and flexible.
Techniques which work for able bodied students work for persons with a disability, with consideration for the individual frustrations caused by the handicap.
It is important that counselors, teachers and parents recognize the right of the person with a disability to the sexual expression. To repeat the ongoing theme of this Handbook, it is of utmost importance that the counselor/teacher/parent come to terms with their personal understanding of what being physically disabled, impaired or handicapped, means in issues of sexuality.
It is also important that caregivers recognize that adolescents with disabilities, like all adolescents, need information about sexuality that is clear and accurate, presented to the individual in a manner appropriate to their developmental level. Truthfully, sex education should begin early in life and include social skills as well as sexual information.
Other counseling Considerations
Since the individual with a disability, child, adolescent or adult, usually lives with a family atmosphere, counselors and teachers need to have some empathy with the experience of the parents. Parents are the single most important. influence on the development of a child (Lombana, 1982). There are many problems facing parents who give birth to a child with a disability, or whose child becomes disabled at any age.
Lombara (1982) suggests that the following may be a common experience for families with individuals who have a disability:
1. Lack of professional services in many geographic areas.
2. Difficulty obtaining accurate information on disability and often difficulty obtaining an accurate diagnosis on the handicapping condition.
3. Distrust of various conflicting professional opinions as to the eventual future of their child.
4. Discouragement from over-involvement or under-involvement in their child's education or treatment.
Parents of children with disabilities share common needs with all parents. Counselors and teachers should remember that parents know their child best, know how the child copes with life and are ultimately responsible for the implementation of treatment or suggestions from professionals. They are, in most other ways, no different than parents of non-disabled children.
Parents of children born with or acquiring a disability do have some specific needs. They may need help adjusting to the disability, help to understand what the condition is and the probable outcome. They may feel a greater need to be involved in the child's life and the decision making about their child's treatments and education.
In some cases, the emotional difficulties of the parents may be a greater problem than the child's disability. The attitude of parents significantly influences the child's development and the child's own attitude toward their disability.
Parents of children with disabilities have considerable emotional stress not only because of the disability but as a result of expectations which seem to have been dashed. They may mourn the loss of their imagined child while having to deal with the severe realities of having a child with a disability.
Parents need help in many ways. They may feel uncertain of their own parenting abilities and hand over the care of the child to others. Insecure parents need more moral support and concrete suggestions about the care of their child at any stage, not just directly after birth.
Counselor Role With Parents
Parents, teachers and counselors are part of a team concerned about the child's development. Counselors are often asked to conduct a wide variety of services and often wind up coordinating a larger team of professionals.
Parents may need help understanding and coming to terms with their own attitude towards the child and the disability they may need help exploring their own feelings as well as needing support and services from the community in times of crisis and on an ongoing supportive basis. Counseling for grief issues is important - grief may cause ongoing depression. Each transition the child makes or misses may make issues of mourning resurface.
Counselors may often act as a consultant for educational and social needs (Lombana, 1983) and may be asked to provide information to help parents cope with their feelings. The counselor or teacher of a student with a disability must be willing to accept their own limitations and be willing to create an accepting environment for the child and the parents.
A school counselor who may deal with persons with disabilities may eventually have to deal with the whole family, including the siblings of the person with the disability. Individual able bodied students may have problems which have their root in the fact that they are siblings of persons with disabilities.
There is some research regarding siblings of persons with disabilities; the majority of it comes from research on persons with mental handicaps. Seligman (1983) and Grassman (1972) found that the following points are relevant to brothers and sisters of persons with disabilities.
l. Some siblings benefit from the experiences of having a brother or sister who is handicapped. They are more tolerant, more aware of existing prejudice and may be more certain about their own future goals.
2. Some normal siblings were harmed from the experience; they were bitter about the family situation, felt guilt over their feelings towards parents and the handicapped child, and felt fear about the possibility of being "defective".
3. Some were often exempt from the care for the disabled sibling, whereas daughters were more active in daily care.
4. Parental acceptance of the individual with the disability was a major factor affecting acceptance of the disabled person by their siblings.
5. Upper income families had more opportunity for outside care and support but there was also guilt over this.
6. Lower income families had to care more for the disabled member themselves -- larger families fared better because they shared the responsibility.
Brothers and sisters were found to respond differently to having a disabled sibling, and lower income families had other day to day concerns about survival issues as well as issues surrounding the disability of one member (Seligman, 1983).
Feelings of Able Bodied Siblings
Siblings hold many irrational fears surrounding disability, such as fear of catching it. They may also develop similar symptoms in order to gain attention from parents. Older children may harbor feelings of anger toward the situation, and guilt about their feelings of anger. They may feel ignored and unappreciated, and may feel or actually be isolated because of their sibling's disability.
Parents insensitivity contributes to the anger and resentment felt by an able bodied sibling. Parents sometimes embrace the myth that their handicapped child is the only needy one (Seligman, 1983).
Aims of Counseling With Siblings
The feelings of able bodied siblings may be ignored and negated, or punished by parents. The counselor who works with siblings of children with disabilities should keep in mind that the able bodied child may have unexpressed anger and that they need to come to terms with their feelings, learning that feelings of anger and guilt are normal, and that expression of this anger is necessary.
The family needs encouragement to communicate -- open communication about the nature of the handicap is essential; the non-disabled members of the family need to know such things as the cause of the disability, the outcome, how society perceives the disabled member. The able bodied family members need reassurance that they are loved for themselves, just as the disabled member needs to know they are loved for themselves.
Seligman (1983) suggests that counseling with able bodied siblings of children with disabilities has four major aims:
l. Siblings should come to a deeper and broader understanding of their personal feelings towards the disabled family member.
2. Able bodied siblings should develop skills and attitudes which enable them to handle problems and feelings constructively and be able to plan how to solve such future.
3. The counselor may help the able bodied siblings make future career and life plans which are realistic and take into account the needs and desires of the individual
4. The counselor can assist the family in strengthening the relationship between the able bodied sibling and other family members.
Table of Contents
This section has presented some views and opinions about several psychosocial aspects of counseling with individuals with disabilities. Both teachers and counselors who deal with individuals with disabilities need to be aware of the many factors which influence the development of the individual.
A disability touches every area of a person's life. When the individual and those who deal with him or her are able to place the disability into perspective, then life can go on in a full and productive fashion. The emphasis needs to be on the person as a unique individual first, then attention may be paid to the disability and the support it may require, second.
Throughout this Handbook, the author has made great effort to stress that individuals with disabilities have the same human needs as the non-disabled plus specific needs which arise from the existence of the disability itself. Many of these needs are a result of lack of services such as adequate transportation or housing. Some of these needs are psychosocial, arising from the psychological impact of disability on development.
The skills that a counselor or teacher needs are the skills that all good counselors or teachers need in all their work. The difference may be that the teacher or counselor dealing with individuals with disabilities needs to be well informed about specific disabilities, be knowledgeable about the available resources and support services and be sensitive to issues of disability. He or she must also be prepared to deal not only with the individual student but with the extended family and support/treatment system the student may bring with them.
The counselor/teacher involved in intervention programs for individuals with disabilities will also need to understand the normal pattern of development and how disability can effect all aspects of human development, as well as being able to design programming and personal intervention which is suitable to the individual's stage of development.
A Last Word
No one would choose to live life with a severe physical disability and if magic could be performed, individuals who have a disability would cheerfully give it up. Yet, when a person comes to terms with their disability, life can be experienced in a normal and complete fashion. Life lived normally is a life full of ups and downs, excitement and disappointment, right and wrong choices. An individual with a disability needs positive support from the system and needs to know that they are respected as an individual and as a human being.
The role of the counselor or teacher would best be described as multifaceted -- an information giver, a leader, a supporter, and a guide, and sometimes an advocate against a system which often seem to work against the individual with a disability. The effective counselors must be prepared to deal with the individual, the family and society in general.
Working with individuals who are disabled is a unique challenge which does not leave the counselor or teacher untouched in the heart.
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