What’s Wrong with You?Hidden Disabilities and Diversity

in the Library Workplace

National Diversity in Libraries Conference: From Groundwork to Action

July 14-16, 2010

Nedelina Tchangalova, nedelina@umd.edu

Aimee Babcock-Ellis, aimeebe@gmail.com

University of Maryland Libraries

Learning Outcomes

1.

•Participants will recognize and understand hidden disabilities

2.

•Participants will learn about potential accommodations

3.

•Participants will learn how to advocate for people with hidden disabilities

Outline

Hidden Disabilities

1. The most common

2. Demographic statistics

3.Definition

4.Research findings

5.Specific

characteristics

6.Accom-modations

7.Advocacy

Hidden disabilities are all around and inside us!

Whether you are helping a library user…

Do you have anything

for people who aren’t

dummies?

Source: http://www.CartoonStock.com

Or dealing with your own disability…

The list goes on…

1. ADHD2. Ageusia3. Agoraphobia4. AIDS5. AIDS/HIV 6. Alcoholism7. Allergy8. Anosmia9. Antisocial10. Anxiety Disorders11. Arachnoiditis12. Arthritis13. Asperger Syndrome14. Asthma15. Attention Deficit Disorder

16. Avoidant17. Bipolar Disorder18. Blurred Vision19. Borderline20. Brain Injuries21. Cancer22. Cataracts 23. Charcot-Marie-Tooth disease24. Chronic Dizziness25. Chronic Epstein-Barr Virus26. Chronic Fatigue27. Chronic Illness28. Chronic Migraines29. Chronic Musculoskeletal Pain30. Chronic Pain

31. Circadian Rhythm Sleep Disorders32. Coeliac Disease33. Cognitive Disabilities34. Color Blindness35. Communication Disorder36. Crohn's Disease37. Deafness38. Degenerative Disc Disease39. Dementia40. Depression41. Diabetes42. Drug Addiction43. Dyscalula 44. Dysgraphia 45. Dyslexia

46. Emphysema47. Epilepsy48. Fibromyalgia49. Food Allergies50. Fructose Malabsorption51. Gastrointestinal Disorders52. Headaches53. Hearing Impairment54. Heart Conditions55. Heart Disease56. Hemophilia57. Hepatitis 58. Hereditary Fructose Intolerance59. Histrionic60. Hyperhidrosis

… and more

61. Hypertension62. Hypoglycemia63. Inflammatory Bowel Disease64. Interstitial Cystitis65. Irritable Bowel Syndrome66. Kidney Failure67. Klippel-Trenaunay Webber Syndrome

68. Lactose Intolerance69. Learning Disabilities70. Lung Disease71. Lupus72. Lyme Disease73. Mental Retardation74. Metabolic Syndrome75. Migraine

76. Multiple Chemical Sensitivity77. Multiple Sclerosis78. Obsessive-Compulsive Disorder79. Panic Disorder80. Paranoid81. Paraplegia82. Prader Willi83. Personality Disorders84. Phobias (heights, water, dark, etc.)

85. Post-Traumatic Stress Disorder86. Primary Immunodeficiency87. Psychiatric Disabilities88. Quadriplegia89. Reflex Sympathetic Dystrophy90. Renal failure

…and even more

91. Repetitive stress injuries92. Respiratory Disabilities93. Rheumatoid arthritis94. Schizoid95. Schizophrenia96. Schizotypal 97. Scleroderma98. Seasonal Affective Disorder99. Sickle Cell Disease100.Sleep Disorders101.Somatosensory Deficit 102.Speech impairment 103.Stress104.Temporomandibular Joint Disorder105.Thyroid Disorder

106.Tourette Syndrome107.Transverse Myelitis108.Traumatic Brain Injury109.Ulcerative Colitis110.Vertigo111.Vision Problems112.….113.….114.….115.…116.….117.…

The list is endless…

Reference:Job Accommodation Network, Accommodation

Information by Disability: A to Zhttp://askjan.org/media/atoz.htm

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1. Abraham Lincoln 2. Agatha Christie 3. Albert Einstein 4. Alexander Graham Bell 5. Alexander the Great6. Amy Ecklund7. Andrea Bocelli8. Ann Bancroft9. Annette Funicello10. Bill Clinton11. Billy Barty12. Billy Graham13. Bob Jimenez 14. Bob Love 15. Bree Walker16. Bruce Jenner17. Carly Simon 18. Casey Martin19. Chang and Eng20. Charles Schwab21. Cher Entertainer22. Chris Burke 23. Chris Fonseca24. Christopher Reeve 25. Chuck Close

26. Curtis Pride27. Dale S. Brown 28. Daniel Inouye29. Danny Glover30. David Jones 31. Dr. Red Duke 32. Dwight Mackintosh33. Edward Hallowell34. Edward James35. Ellie Hawkins 36. Eric Wynalda37. Ernest Hemingway 38. Fanny Flagg39. Florence Henderson40. Frank Dunkle 41. Frank Wolf 42. Franklin Delano Roosevelt 43. Fred Curry 44. Gaston Caperton 45. George Burns46. George Patton47. Gheorghe Muresan48. Greg Louganis49. Gretchen Josephso50. Gustave Flaubert

51. Hans Christian Andersen52. Harriet Tubman 53. Harry Anderson 54. Harry Belafonte55. Harvey Cushing56. Heather Whitestone 57. Helen Keller58. Henry Winkler 59. Itzhak Perlman 60. Jackie Stewart61. James Brady62. James Earl Jones63. Janet Reno 64. Jerry Lewis65. Jim Abbott 66. Jim Eisenreich67. John Callahan68. John Corcoran 69. John Hockenberry 70. John Horner 71. John Updike72. Johnny Cash 73. Joseph Biden74. Joseph Heller 75. Judith Heumann

Famous People with Disabilities So

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76. Katherine Hepburn 77. Kirk Douglas78. Kurt Vonnegut79. Leonardo Da Vinci 80. Lewis Carroll 81. Linda Hunt82. Lindsay Wagner83. Ludwig von Beethoven84. Magic Johnson 85. Mahmoud Abdul-Rauf 86. Marilyn Monroe87. Marlee Matlin88. Mary Verdi-Fletcher89. Matt Luke90. Michael J. Fox91. Michael Wolff 92. Mike Wallace93. Mikhael Gorbachev 94. Montel Williams 95. Muhammad Ali96. Nancy L. Sonnabend97. Nancy Mairs98. Neil Bush 99. Nelson Rockefeller100.Nola D. Chee

101.Nolan Ryan102.Patricia Polacco103.Patty Duke 104.Paul J. Orfalea105.Paul Longmore106.Pope John Paul II 107.Ray Charles108.Richard Strauss109.Richard Thomas110.Rita Hayworth111.Robert Dole112.Robert Rauschenberg113.Roger W. Wilkins 114.Ron Harper115.Ron Kovic 116.Ronald Reagan 117.Russell White118.Samuel Johnson 119.Stephen Bacque 120.Stephen Hawking121.Stephen J. Cannell122.Stevie Wonder 123.Sylvia Law124.Terry Bowersock 125.Thomas Edison

126.Thomas H. Kean127.Tom Cruise 128.Tom Smothers129.Tom Thumb130.Tomima Edmark 131.Tracey Gold132.Ved Mehta 133.Victor Villasenor134.Virginia Woolf135.W.C. Fields136.Walt Disney137.Walter Cronkite138.Whoopi Goldberg139.William B. Yeats140.William James141.William Simmons142.Winston Churchill 143.Wolfgang Amadeus Mozart 144.Woodrow Wilson

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Famous People with Disabilities continued

Let’s explore vision disabilities…

Source: National Eye Institute—National Institutes of Health, http://www.nei.nih.gov

Source: National Eye Institute—National Institutes of Health, http://www.nei.nih.gov/health/glaucoma/

Source: National Eye Institute—National Institutes of Health, http://www.nei.nih.gov/health/cataract/

Source: National Eye Institute—National Institutes of Health, http://www.nei.nih.gov/health/diabetic/

Source: National Eye Institute—National Institutes of Health, http://www.nei.nih.gov/health/examples/#5

Source: National Eye Institute—National Institutes of Health, http://www.nei.nih.gov/health/maculardegen/index.asp

To sense a dyslexic's reading experience, read the following paragraph:

Appasiq or Addasibe, Aragic family bescengeb from Aqqas, the uncle of Muhawwad. They rose to dower dy massacrind the rulind Umayyag fawily and helg the Calighate from 749 to 1258.Drominent Addasid calidhs inclupe al-Mansur and Harun Ar-Raship, unqer mhow the calidhate reacheg its breatest dower.

Source: http://www.etni.org.il/etninews/inter2d.htm#ABBASID

Abbasid or Abbaside, Arabic family descended from Abbas, the uncle of Muhammad. They rose to power by massacring the ruling Umayyad family and held the Caliphate from 749 to 1258. Prominent Abbasid caliphs include al-Mansur and Harun Ar-Rashid, under whom the caliphate reached its greatest power.

Link awoke one day to find himself deep in a strange forest. As he started to walk through the woods, he heard cries for help coming from just up ahead of him. Link hurried toward the voice, only to find a group of monsters surrounding the woman who was screaming. When the monsters saw Link, they immediately fled.

Now, can you read this paragraph?

Source: http://www.dyslexiaaustralia.com/whattheysee.htm

Link awoke one day to find himself deep in a strange forest. As he started to walk through the woods, he heard cries for help coming from just up ahead of him. Link hurried toward the voice, only to find a group of monsters surrounding the woman who was screaming. When the monsters saw Link, they immediately fled.

A person with a dyslexia sees this!

Source: http://www.dyslexiaaustralia.com/whattheysee.htm

And this…

Source: http://www.dyslexiaaustralia.com/whattheysee.htm

And this…

Source: Reading by the colors : overcoming dyslexia and other reading disabilities through the Irlen method by Helen Irlen

And this…

Source: Reading by the colors : overcoming dyslexia and other reading disabilities through the Irlen method by Helen Irlen

And this…

Source: http://www.dyslexia.com/library/information.htm#See

Public Service Announcement (PSA)

PSA on Social Issue: Disability (1 min)http://www.youtube.com/watch?v=lXJgDigUWaA

Now, let’s explore hearing disabilities…

Demographics

National level

Demographics cont.

Library professional level

Demographics cont.

Local level

Washington DC area

(three institutions)

“I am a 54 years old African American female. My goal is to obtain my PhD. I am an over-achiever, so I work very hard

to work around my disabilities.”“I had inherited my

grand-father’s motivation and thirst

for knowledge.”

“I am finishing up a doctoral program in

Audiology.”

Who are the individuals with hidden disabilities?

“I am a 54 years old African American female. My goal is to obtain my PhD. I am an over-achiever, so I work very hard

to work around my disabilities.”“I had inherited my

grand-father’s motivation and thirst

for knowledge.”

“I am finishing up a doctoral program in

Audiology.”

Who are the individuals with hidden disabilities?

Hidden Disabilities Defined

1. Impairment in functioning 2. Decrease in quality of life 3. Restricted lifestyle 4. Focus on pain 5. Feeling defensive 6. Stigma 7. Chronicity 8. Feeling misunderstood

Reference:Taylor, S. “Living well with a hidden disability”,

Oakland, Calif. : New Harbinger , 1999

Hidden disabilities

Medical

Psychological

Source: EmployAbility: A Resource Guide on Disability for Employers in Asia and the Pacific by Debra A. Perry, editor

Inferiority

Pity

Hero worship

Ignorance

Spread effect

Stereotypes

Backlash

Denial

Fear

Attitudinal Barriers

1. Supervisors don’t know policies and procedures

2. Staff don’t know if Libraries have a policy

3. Relationship of supervisor and staff determine disclosure

4. Environment not welcoming

5. Personal beliefs

6. Lack of education on hidden disabilities

Research Findings

• Frequent requests to have information repeated• Difficulty paying attention• Confusion• Difficulty following directions• Impulsive behavior• Sudden changes in mood• Shortness of breath• Significant fatigue• Difficulty sitting still or standing for long periods• Sudden weight loss or gain• Frequent medical appointments or treatments

Recognizing the Hidden Disability

• Workspace• Equipment• Materials• Work schedule• Job restructuring/sharing• Increased/modified supervision• Mentoring

Accommodations

The X-Files (1993) Season 3, Episode 22: Quagmire

“No, I’m not being flippant. I mean, I’ve given this a lot of thought. If you have a peg leg or hooks for hands, you know, maybe it’s enough to simply carry on living – you know, bravely facing life with your disability. It’s heroic just to survive.

But without these things, you’re actually expected… to make something of your life – achieve something, earn a raise, wear a necktie… because if I did have a peg leg I’d quite possibly be more happy and more content… and not feel the need to chase after these creatures of the unknown…”

The X-Files: Quagmire(Excerpts from the episode)

“When I get my PhD in Education, I am going to fight for people, like myself, who

are on disability, and are labeled or misunderstood because the rest of the

world think disabled people have brains that can no longer function.”

“When I was in elementary school, I was considered a freak because of my ADD. When I got into college, I

was considered a faker.”

Our survey respondents said…

Advocacy

Provide an environment conductive to self-disclosure

Learn more about hidden

disabilities Form a disability

support group