Diversity in Libraries

SERVING PATRONS WITH HIDDEN DISABILITIES

Who Are They?

They are people whose disability is not immediately obvious when you see them.

Some of them are people who try to keep others from knowing they are disabled because they are ashamed or they fear negative reactions.

Many of them have disabilities which are misunderstood or not taken seriously.

Some disabilities which may be hidden are:

Low vision Hard of hearing Autism

Learning disabilities Mental retardation Speech

disabilities

Mental illness Deafness Epilepsy

Traumatic brain injury Attention deficit Addictions

Chronic illness (e.g.,heart disease, diabetes or HIV/AIDS

Environmental disabilities (e.g., allergies/anaphylaxsis)

Related Issues:

A person who is trying to hide his/her illiteracy may be confused with someone who is trying to hide a disability.

A person who speaks and understands little or no English may be confused with someone who is hiding a disability.

Etiquette

1. Ask if help is needed and wanted. Let the person decide.

2. If help is needed and wanted, ask how you can help, and follow instructions.

3. Speak directly to the person (not his/her companion) in your usual speaking voice, even if you are speaking with someone who is deaf or hard of hearing. Speaking loudly is ineffective, although you may need to speak a little more slowly than usual.

4. Do not speak so slowly, though, that your lip movements are distorted. Someone who speechreads needs to see your facial, throat, and lip movements without distortion. Try using synonyms since different words may be heard more easily--or they may be read more easily on the lips.

5. A Carolina CLIS student who was disabled once wrote: “Disabled people want to be treated like any other normal people.” He meant that we should not confuse the person with the disability. Obviously, the disability must be taken into account, but once you’ve dealt with the barriers, interact with the person as you would with anyone.

6. If you suspect that a person has a disability, don’t say “are you handicapped?” Say something like “would you like me to find the call number for you?” or simply experiment to discover what works. That permits the person to decide how much he/she wants to share.

7. Respect a person’s right to keep a disability hidden. Maintain confidentiality unless it is clear that he/she is comfortable with “coming out.”

8. Believe a person who says he/she has a disability. It’s not impossible--but it is unlikely--that a person will pretend to be disabled. Some, though, pretend to have a different disability if they think there is less stigma attached to it than to the one they have. Some, too, may have been inaccurately diagnosed, or they may not understand their own disability and give misinformation unintentionally.

9. There is no real agreement about appropriate terminology, although terms like “deaf and dumb,” “deaf mute,” “idiot,” “imbecile,” and “retard” are definitely out! Many people are irritated by pop terms like “differently abled,” “physically challenged,” etc. They seem like doublespeak!

It is inappropriate to use the name of the disability as a noun -- as in “the blind.” Say “the blind person” or “the mentally retarded child.” Even better, put the person first by saying “the person who is blind” or “the child with mental retardation.”

Common Stereotypes, Mistaken Assumptions, and Responses about People with Disabilities

1. A disability is a medical condition which must be cured.

Response: A disability is not a sickness. A person with a disability can be healthy (witness wheelchair athletes). Some disabilities can be cured. Others can’t.

2. A person with a disability would go to any length to be cured.

Response: Some people long to have their disability cured; others accept it as a part of life and are not concerned with a cure; still others would not give up the disability if they could. They like who they are and believe they would be different if they were not disabled.

3. People with disabilities are depressed--and depressing. They need others to bring some joy into their lives.

Response: Like many statements on this list, this statement is true for some and not for others. People who are disabled are individuals and respond individually.

4. People with disabilities who succeed are courageous and heroic.

Response: People with disabilities who succeed are not courageous and heroic except in the sense that we all are. They are using their abilities effectively.

5. Disability is multiple: for example, someone who cannot speak is mentally retarded. Mental retardation accompanies most disabilities.

Response: Some disabilities are multiple (that is they are syndromes); others are not. It varies with individuals. MR accompanies some; not others. Don’t assume without checking.

6. People who are mentally retarded are angelic and always childlike.

Response: See #3

7. People who are mentally retarded are evil and dangerous.

Response: See #3

8. #6 and #7 apply to other disabilities as well.

Response: See #3

9. People who are disabled are asexual.

Response: Regarding sex, too, people with disabilities follow the spectrum of any other group of people. Some disabilities however, (for example, traumatic brain injury) may interfere with the usual patterns of sexual expression.

10. People who are disabled are obsessed with sex.

Response: See #9.

11. A person who is disabled doesn’t know he/she is disabled. One should not, for example, ask a person who does not speak clearly to repeat if you do not understand. It would embarrass him/her.

Response: Small children may be confused when they are reacted to differently, but it is not long before they realize they are different. Someone who does not let the disability interfere with communication is appreciated. One may need to ask that the message be repeated, take more time, or try an alternative technique like writing or gesture. The important thing is to establish communication.

12. The life of a person with a disability is consumed by the disability.

Response: The answer varies somewhat for different disabilities. For example, a person who is legally blind must be much more organized than the rest of us to carry out ordinary life activities; even then, though, the disability is only one part of life--relationships with family and friends, study or training, hobbies, employment, and so on.

13. People with disabilities need to be protected from experiencing the difficult challenges nondisabled people face.

Response: People with disabilities have the right to (and need to) face the same difficult challenges as others. Children do not become psychologically mature, self sufficient adults unless they learn to cope with difficulty. The same is true for children who are disabled. Adults with disabilities have the right to be treated as adults. They do not, of course, need the additional challenges of architectural barriers and stereotypical attitudes which they often face.

14. The disability is the most difficult challenge the individual faces.

Response: The last sentence of the previous answer speaks to this. More difficult than the disability is the attitude of society (represented by architectural barriers, inadequate support for many of the things an individual needs, and indifference) and of the individuals in that society who avoid interacting, who stigmatize and stereotype, and who fail to support individual people with disabilities in bringing about change.

15. People who are mentally ill are dangerous and unpredictable.

Response: The term “mental illness” encompasses many disabilities, most of which are not easily recognized as such. Few people with mental illness are dangerous; most are quite predictable. It’s almost a certainty that you interact every day with someone who carries the label, and you don’t even know it!

16. Mental disabilities are all interrelated: Someone who is mentally retarded is also mentally ill; someone who is learning disabled is also mentally retarded.

Response: “Mental” disabilities (if there are such things!) are not interrelated. Mental retardation is not mental illness, and learning disabilities are not mental retardation. Of course, a person who is mentally retarded may also be mentally ill, and a person who is mentally retarded may also have a specific learning disability, but that’s the exception -- not the rule.

17. People who are disabled are unable to understand and express their own wants and needs.

Response: Most people with disabilities recognize and can express their needs if some method of communication has been established.

18. People who are disabled are surly and demanding.

Response: Some people who are disabled are surly and demanding. You probably would be too if you had to put up with some of the situations they deal with in society!

19. An employee who is disabled costs the company money because he/she is out sick and/or hospitalized often--and it costs a lot to adapt the facility and the task.

Response: Here again the truth depends on the disability and the individual. Typically, though, employers say that their employees with disabilities are excellent employees. There is evidence that only a small percentage of employees require extensive modification to accommodate them.

20. People who are disabled are inherently honest.

Response: See #3.

21. People who are disabled are sunny and selfless.

Response: See #3.

22. Giving to charities like Jerry Lewis’ telethon helps people with disabilities.

Response: Actually, giving to Jerry Lewis’ telethon makes many people with disabilities very angry for a number of reasons. Some feel the vast amounts of money focused on one group of conditions draws money away from other equally pressing needs. Some see contributing to such charities as a way those who are not disabled can feel good about themselves for giving charity without ever having to come in contact with a “cripple!” Still others are offended by Lewis’ openly stated attitude that people with disabilities are to be pitied and that their lives are miserable. (He also sometimes talks about them as heroes -- which is a real put down, although I’m sure he doesn’t understand why.)

23. A person who is disabled needs your sympathy and protection.

Response: A person with a disability needs your respect and awareness of his/her individuality and your support for policies and legislation which break down barriers to independence. To the extent that your interests and concerns coincide with his/hers, your friendship is welcome. In other words, developing relationships with individuals who are disabled is much like developing relationships with anyone else -- except that you may need to adapt. For example, you may need to learn to speak sign!

24. Old age is a disability.

Response: Old age is not a disability. Beginning in their 20s, though, people begin losing some sensory abilities. Hearing is the first to decline. Among the “old old” (those 85 or older) the likelihood that a person will have a disability increases greatly, but losses are highly individualized. An old old person is not necessarily seriously disabled.

25. The phrase “developmental disability” means “mentally retarded.”

Response: The first federal definition of “developmental disabilities” was essentially the same as that for “mental retardation.” Since 1978 the federal government’s definition has included (in general terms) any severe, long term disability which originates in early childhood. Thus, disabilities such as cerebral palsy, autism, Fetal Alcohol Syndrome, and deaf/blindness are included in the definition in addition to mental retardation. Some states and localities still use the older definition in their laws and regulations. It is important to know which definition applies in a given situation.

26. A learning disability is any disability which interferes with learning.

Response: A diagnosis of “learning disabled” means that an individual (usually of average or higher intelligence) is unable to learn in a specific area such as an aspect of reading, mathematics, or spatial orientation. Over a hundred different specific learning disabilities have been identified.

27. Dyslexia means seeing letters reversed (e.g. “b” instead of “d”), and it is synonymous with “learning disability.”

Response: Dyslexia is essentially synonymous with the term “reading disabilities.” It is now understood that a number of specific problems can result in a reading disability. Specialists attempt to identify the specific problem.

28. Never give sugar to a person with diabetes.

Response: If insulin balance is controlled, the individual with diabetes typically would not take sugar. However, if he/she has an insulin reaction (that is, too much insulin in the bloodstream), sugar is needed to reestablish the balance. Be aware of the symptoms of insulin reaction and know how to respond.

29. Always call an ambulance if a person has a tonic clonic (grand mal) seizure.

Response: One need not call help unless the seizure lasts longer than two or three minutes or unless the first seizure is followed by another.

30. If one follows federal guidelines for a barrier-free facility, any person who is disabled will be able to use the library.

Response: Federal guidelines for barrier free facilities deal primarily with barriers which affect wheelchair movement. They are designed for healthy, young males--not children or people who are ill or who have weak shoulder, arm, and wrist muscles.To some extent they also cover barriers to people who are dexterity disabled and those who are blind or deaf. They do not cover barriers to people who are mentally retarded or learning disabled. To create a facility which is truly barrier free, one must go beyond the federal guidelines.

31. It is easier to adjust to a disability which one has had from birth than to a disability which is acquired.

Response: It doesn’t appear to make any difference in one’s ability to adjust whether the disability existed from birth or whether it was acquired later.

32. People with disabilities have low self esteem.

Response: See #3.

33. Reading is no problem for someone who is deaf.

Response: People who became deaf after they acquired verbal language skills have little trouble reading, but if they have poor verbal language skills, people who are deaf probably will also have difficulty reading. That is the basis for the strong position of those who favor the oral approach to teaching and communicating with children who are deaf. (Note that people who become deaf after they have acquired verbal language sometimes do not speak clearly because they can no longer modulate their voices by hearing themselves. They retain their verbal language skills, though, and have no problem reading.)

34. Behaviors and emotional responses are learned and can be controlled if one tries.

Response: Most of us can change behaviors and emotional responses with reasonable ease. Traumatic brain injury, strokes, fetal alcohol syndrome, and other brain damage potentially damage the parts of the brain which control behavior and emotions. Sometimes the individual can relearn acceptable behaviors and appropriate emotional responses, but it is a slow and arduous process.

35. A person who staggers and has slurred speech is drunk.

Response: Such a person may be drunk or on other drugs, or he/she may be experiencing an insulin reaction. If so, it is a medical emergency. Be sure you know which situation you are dealing with.

36. People who are mentally ill are problem patrons. They are easy to spot because they act crazy.

Response: Some people who are mentally ill are problems, but the majority call no special attention to themselves. “Problem patrons” can be young adults who disturb other adults in the reference room, lonely people who cling, or professors who make unreasonable demands. Think in terms of problem behaviors -- not problem patrons!

37. Sign language is a poor substitute for a true language.

Response: Sign language is a true language. It meets the linguistic criteria for a language. Instead of spoken sounds, meaning is transmitted through hand shapes, position, and movement. ASL (American Sign Language) is the fourth most commonly spoken language in the U.S. it is used to communicate successfully not only with people who are deaf, but also with many who are mentally retarded, autistic, or otherwise language disabled.

38. A person with a low score on an IQ test is mentally retarded.

Response: IQ scores have lost much of their credibility. It is rare nowadays to label a child as mentally retarded on the basis of a single IQ test. Instead, serious generalized problems with learning constitute one of the three criteria for diagnosing mental retardation. The other two are (1) inability to adapt in one’s environment and (2) onset in the “developmental period” (that is, in early childhood).

39. Physical disabilities are the most numerous.

Response: The term “physical disability” is vague. One usually thinks of it in connection with wheelchairs and crutches. Actually, most -- if not all --disabilities result from some physical cause. For example, some mental retardation results from genetic defects (Down Syndrome, Fragile X); some results from brain damage associated with maternal consumption of alcohol or other drugs. Some learning disabilities result from chemical disorders in the brain. There is evidence that some mental illnesses also have an underlying physical cause.

Back to the question, though. Although it’s impossible to be sure, it appears that the largest category of disabilities is learning disabilities.

40. Drug addicts are covered by ADA.

Response: Drug addicts are covered by ADA only if they are in recovery.

41. People with mental illness are covered by ADA.

Response: Yes.

42. People with HIV/AIDS are covered by ADA.

Response: Yes.

43. If a person becomes disabled while he/she is employed, he/she is covered by ADA.

Response: Yes.

44. Individuals, as well as their employing agencies, can be sued for non-compliance with ADA.

Response: Yes.

What to Do When you Know the Problem:

Ask the person what help is needed. Follow his/her lead.

Techniques Which Typically Work With People With Specific Disabilities

Deafness:

Speechreading Writing Gesture

Sign language:

Fingerspelling Cued speech

American Sign Language (the language used by most people whose first language is sign; its syntax and grammar are different from English)

Signed English (a form of manual English which follows the syntax and grammar of English)

Total communication (sign and speech combined)

Techniques:

1. Stand or sit in good light, without shadow or glare. Keep your head up, facing the person. He/she should not face the light source.

2. Arrange for him/her to sit or stand close.

3. Voices pitched lower are usually more easily understood.

4. Speak clearly, without distortion, moving your lips. Lipstick highlights the lips; mustaches, beards, chewing gum, and cigarettes mask lip movement.

5. It is preferable to sign high on the body against solid-color clothing which contrasts with skin color.

6. Arrange for an Interpreter for the Deaf when one is needed.

Hard of Hearing:

Many of the same things apply (e.g., face the person and enunciate clearly but without distortion).

There are other considerations as well:

1. Speaking more loudly is generally not helpful.

2. Repeat the message using different words; someone who is hard of hearing usually hears only parts of words, so some words are very difficult to understand. Synonyms may be understood more easily.

Legal Blindness and Low Vision:

1. Make sure that the person can use his/her residual sight and other senses. That is, be sure the lighting and acoustics are good.

2. Do not speak more loudly than usual. Be aware that the person may not look in your direction.

3. Speak directly to the person, not to a companion.

4. When giving directions, be very specific. Depending on the degree of disability, you may need to speak in terms of the person’s left and right, not yours. Speak in terms of the number of steps; it often helps to talk about locations as points on a clock with the person as the center.

Speech Disabilities:

The person may communicate using:

Speech Sign language Gesture Writing

Assistive communication devices (some are simple boards with pictures; others are highly sophisticated; some require that you know what the symbols mean to the person).

Techniques:

1. Be patient. Listen attentively.

2. Watch the person’s lips (that is, speechread). Ask him/her to repeat as needed.

3. Give him/her plenty of time. More time is required regardless of the technique.

If the person stutters:

1. Don’t complete sentences for him/her.

3. Don’t call attention to the problem. Be unembarrassed by dysfluency.

Language, Perceptual, and/or Cognitive Disability: (e.g., Autism, mental retardation, learning disabilities, traumatic brain injury, fetal alcohol syndrome, attention deficit disorder)

Some General Ideas:

1. Use words appropriate to the person’s level of language development.

2. Use short, simple, complete sentences. Use noun first, then verb. Use simple vocabulary. Focus on the concrete first.

3. Do not raise your voice. Speak distinctly, correctly, and slowly.

4. Present information in small segments. Repeat each segment.

6. Emphasize success. Give prompt feedback.

7. Be consistent.

8. Minimize distraction.

9. Present information in several learning modes (i.e., visual, aural, tactile, kinesthetic)

10. Be prepared to use sign language or assistive communication devices.

In Addition, If the Problem Is:

Learning Disability:

1. Use leading questions or prompts.

2. Make clear your expectations.

3. Provide positive reinforcement.

4. Use alternate media (for example, a tape recorder) as needed.

Autism:

1. Use techniques with which the person is already familiar.

2. Give instructions in short, sequential steps.

3. Use one-, two- or three word sentences.

4. The person may communicate through behavior. Try to discover what the behavior communicates.

Behavior Disorders/Mental Illness/Alzheimers Disease:

1. Be patient.

2. If the person is agitated, don’t argue or yell. You do not want to worsen the situation. Speaking calmly and quietly is more effective.

3. Listen attentively. Take what the person says seriously. (It is what he/she believes)

4. Be clear, specific, and consistent.

5. Give positive reinforcement as much as possible.

6. Be aware of your nonverbal messages.

7. Call for help if it appears the person is dangerous to him/herself or to others.

When You Are Trying to Discover the Problem

NOTE: You may not be able to discover what the problem is. (That is less important than that you discover how to provide the needed service.)

Try the following: Be sure that you are in the person’s field of vision. Speak clearly in a normal voice. Try to establish eye contact.

Observe the person’s response:

A person who is deaf may sign or gesture deafness.

So may a person who is hard of hearing.

A person who is blind may not turn his/her head to make eye contact but will indicate that you are heard.

A person who is mentally retarded may appear confused but show awareness that you are communicating, or he/she may sign.

A person who is learning disabled may respond in the same way as a person without disabilities, or he/she may appear uneasy or confused. There is great variability in the effects of learning disabilities.

Likewise, people with behavior disorders or mental illness may respond in many different ways. It depends on the specific disability and the degree of disability.

A person who refuses to interact in any way (eye contact, verbal interaction, body language that indicates listening) may be autistic.

The person responds to you:

He/she speaks, but you can’t understand.

The person may be deaf or extremely hard of hearing. He/she shapes words based on the distorted sounds he/she hears.

He/she may have a defect in the speech mechanism which makes it difficult to form words.

He/she may have trouble organizing speech (that is, he/she may have aphasia). People with traumatic brain injury or stroke sometimes have aphasia.

Follow the person’s lead.

Some specific behaviors to watch for:

Staring, periods during which the person is “out of touch,” and repetitive movements may be indicators of absence or complex partial seizures.

Unusual agitation, panic, and difficulty breathing may signal anaphylaxis.

Slurred speech, sudden changes in behavior, and unusual sleepiness may indicate insulin reaction.

If a person holds reading material close to his/her face or at an unusual angle, he/she may have low vision or he/she may have a learning (reading) disability.

Inordinate friendliness can accompany any of the disabilities. Even people without disabilities fit here. Some are merely lonely; others have poor social skills.

Likewise, inappropriate behavior may accompany many of the disabilities. A person who is blind may rub or poke his/her eyes; a person who is deaf may talk too loudly; a person with traumatic brain injury or an environmental disability may have damage to the part of the brain which controls behavior; or a person who is mentally retarded may not have learned what is appropriate.

Some Chronic Health Conditions Which Can Result in Emergencies (And Some Which Don’t)

General: Take first aid classes, and be prepared!

Diabetes: If a person shows symptoms of insulin reaction, ask if he/she needs to eat.

Keep available some candy made with sugar or some fruit juice sweetened with sugar to offer in an emergency.

Anaphylaxis: There is little time to react to this crisis. The reaction starts shortly after exposure to the allergic substance, and it moves rapidly. Many people carry kits with them to administer their own shots in emergencies.

If the person has no kit, he/she must be taken to the nearest emergency room immediately.

Epilepsy: A tonic clonic seizure (formerly called grand mal) appears much more dangerous for the person who experiences it than it is. One must be sure that there is nothing the person will injure him/herself on. Clear the area around the person and turn his/her head so that the saliva does not flow back into the throat. Do not try to restrain the person. Unless the seizure lasts longer than two or three minutes, there is no need to call for help. The person may be very tired and have a headache after the seizure.

If a person is having an absence seizure (formerly petit mal) or complex partial seizure (formerly psychomotor), one should not interfere. Let the seizure run its course.

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