The Faces of Disability and Disability Health Research A PRIMER
by
BETH DEVOLDER
Cover painting by artist Michelle Britton I always loved art as a youth, while growing up in Kamloops. After graduating from high school, I had many experiences and traveled a lot while going to school to complete a bachelor’s degree in business. During my time in Victoria I suffered a stroke that has rendered me a quadriplegic. I’m now living in Vernon and have rekindled my love of painting. I hope that my art gives you as much joy as making it does for me. –Michelle Britton This Primer was created for the Disabilities Health Research Network (DHRN) in British Columbia, Canada. The DHRN Is funded by the Michael Smith Foundation for Health Research.
Section One
Section Two
What is disability? The many faces of disability
5
When disability is faceless…
9
Disability is a “marked” status
9
Disability is being “other-ed”
9
Disability is defined by what a person is NOT
10
Famous historical faces of disability
14
Disability is social dis-ease
16
Disability is a label
20
Disability is a restriction in activities
22
Disability is being thought unable to work
23
Disability is good business
23
Disability is a protected ground in the Canadian Charter of Rights and Freedoms
24
Disability is a culture/identity
24
Disability is a characteristic of being human
26
Disability is a vantage point to launch inquiry
26
Disability Health Research The many faces of disability health research
29
A visual history
31
Identification
36
Segregation
37
Eugenics
38
Looking back in order to look forward
39
Ethical questions raised
39
The “Medical Model”
40
Characteristics of the medical model
42
The “Social Model�
43
Mulling over the models
44
Hanging on history
44
Making the mean meaningful
46
Socializing the individual/individualizing the social
47
Exploring the world of developmental disabilities and the arts
48
A longer journey: an exploration of individuals’ with disabilties experiences of employment programs
53
Planning for two lifetimes: health work in families of young children with special needs
54
Living with chronic illness: meaningful activity to promote health & well-being
56
A collaborative approach to ensuring the health and safety of persons with disabilities when interacting with law enforcement officers
58
Fair competition for paralympic athletes with spinal cord injury (sci)
60
In conclusion
62
SECTION O NE
What is disability?
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“In the state of nature...all (people) are born equal, but they cannot continue in this equality. Society makes them lose it, and they recover it only by the protection of the law.”
–CHARLES DE MONTESQUIEU (1689–1755) “The reasonable (person) adapts themselves to the world; the unreasonable one persists in trying to adapt the world to (them). Therefore, all progress depends on the unreasonable (person).”
–GEORGE BERNARD SHAW (1856–1950) (Quotations modified to remove gender bias)
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The many faces of disability This section sets out to answer the question: What is disability? While this seems like an easy enough question, the response depends on WHO you are asking the question to as well as your PURPOSE for asking it! Like facets of a diamond, there are different ways of looking at disability and each perspective, each approach, each point of view, helps us to see a different picture, a different understanding and a different aspect of disability. In large measure, this book will have done its job if it causes you to think, “I never thought it that way before...”
The most common way to reply to a “what is” question is with a definition. However, although definitions will not be excluded, images, musings, charts, statistics, poetry, quotable quotes, cartoons, jokes, newspaper articles, interviews, etc. will all be offered as food for thought. Like the “Love is…” or “Happiness is…” posters of the 1970-80s, this chapter begins with “Disability is…”
This book will have done its job, if it causes you to think “I never thought of it that way before...” -5-
“
”
How disability is defined is critical to persons with disability as it directly effects how they are treated. -6-
–MIKE OLIVER, 1990
Disability is...
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...faceless -8-
When disability is faceless… The photographs presented on pages two and three are typical of the kind of images brought to mind by the word “disability”. Even though it is clear that a human being is being portrayed in each picture, the focus is NOT the person but rather, the “disability”. These images are faceless! Granted, some of you might argue (quite correctly) that the author selected these particular photographs for that very reason. Still, they were chosen only after first being taken aback by the sheer number of images of faceless persons present! In Canada, policy makers have adopted the phrase “persons with disability” in order to place the emphasis on personhood rather than disability.1 How troubling, then, that it often gets shortened to the acronym “PWD”!
Consider the wheelchair icon below, the most widely accepted symbol for disability:
The wheel chair, scooter, walker, sign language or Braille are all “markers” for disability—that is, the way that people distinguish between an able-bodied and a disabled person. In this way, persons with disability are marked as disabled and stigmatized. The result of this is often negative attitudes as well as stereotypes about persons with disability.2
Disability is a “marked” status
Disability is being “other-ed”
From another angle, if you search the Clip Art in Microsoft Office programs for “disability” here are examples of the kinds of clips you will find:
The process of being “marked” separates people in society into two opposing groups, in this case: the able-bodied and the disabled; those who are normal and those who are not; or “us” and “them”. Scholars call this dividing practice “othering”. Othering distances us from people who are different from ourselves. Those who are “other-ed” find themselves marginalized and excluded,3 “aliens” in their own society.
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Disability is defined by what a person is NOT The word “disability” itself poses problems for persons with disability. If we look at it closely we find: DIS (a prefix meaning “not”) ABILITY Here are some other words used about disabled persons that have a similar NOT construction: AB-normal, IN-capacitated, IN-valid, DIS-figured, DIS-order, and DYSfunction.
Furthermore, when people are defined as NOT-ability, other people come to believe it! A poignant example of this is illustrated by the following interview with Glenn Shirey, a student at Okanagan College with Traumatic Brain Injury resulting from a car accident in 1996:
Interview Monday, June 22, 2009 In The Adaptive Computer Lab At Okanagan College, Vernon
We are so used to this language of negation when discussing disability that we do not realize how peculiar it is.4 Can you imagine introducing someone at a party in this way: “This is my friend Bob. He’s a NON-scientist, NON-father, is limited in his swimming ability, a challenged public speaker and can’t sing a note in tune for the life of him!” When people are defined by what they are NOT, they become defined by their limitations, by their impairment (medical condition).5 Disability scholar Rosemary Garland-Thompson describes it this way:
“…although actual impairments usually affect particular body parts or physical functions, one specific difference classifies an entire person ‘disabled’ even though the rest of the body and its functions remain ‘normal’. According to this totalizing ‘master status,’ the deviant characteristic overwhelms all of a person’s other, unmarked aspects.” 6
BD: What is “disability”? Glenn: I hate that word!!! (As the
author was writing this down, Glenn indicated that he wanted the words emphasized. The author underlined them and Glenn gestured that he wanted them emphasized even more. He was searching for the word for exclamation mark. The author put two exclamation marks at the end. Glenn said, “That’s it, put one more.”)
BD: (laughing) That’s a very strong
statement! Why do you hate it so much?
Glenn: I don’t think I am disability. I
am slower, but I can figure things out and I will ask for help. If you show me how to do something, it just may take 4 or 5 times for it to click-in.
BD: What does “disability” mean to you?
Glenn: (thinking) I’ve never been asked
“
Disability is when people “dis” your abilities!
”
–STUDENT OF ADULT EMPLOYMENT PROGRAM WITH ASPERGER’S SYNDROME
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that… They think I won’t be able to do it. They might be right, but I’d like to try. I want to be given a chance.
In sum, defining a person by what he is NOT results in discrimination7—he becomes treated as LESS THAN a full human being8; he becomes faceless. The following definition of disability, written by persons with disability, is a response to the experience of being faceless, marked, “other-ed” and defined by what they are NOT: Disability is the disadvantage or restriction of activity caused by a society which takes little or no account of people who have impairments and thus excludes them from mainstream activity. Therefore, disability, like racism or sexism, is discrimination and social oppression.9
Can you imagine introducing someone at a party in this way: “This is my friend Bob. He’s a NON-scientist, NON-father, is limited in his swimming ability, a challenged public speaker and can’t sing a note in tune for the life of him!”
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The faces of disability
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The faces of disability are found across the world in men and women, in rich and poor, in famous and ordinary persons across every age group, profession and religious/political persuasion. -13-
Famous historical faces of disability The following table presents a list of some of the more famous historical faces of disability10:
8th cent BC
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Homer
visual impairment
582
507 BC
Pythagoras
epilepsy
563
483 BC
Buddha
epilepsy
470
399 BC
Socrates
epilepsy
356
323 BC
Alexander the Great
epilepsy
100
44
Julius Caesar
epilepsy
384
822
Aristotle
epilepsy
570
632
Mohammed the prophet
epilepsy
1265
1321
Dante
epilepsy
1412
1431
Joan of Arc
epilepsy
1452
1519
Leonardo daVinci
dyslexia, epilepsy
1475
1564
Michelangelo
mental illness, epilepsy
1564
1642
Galileo
became blind in later years
1608
1674
John Milton
visual impairment
1622
1673
Jean Moliere
epilepsy
1623
1662
Blaise Pascal
epilepsy
1646
1727
Sir Isaac Newton
epilepsy
1672
1725
Peter the Great
epilepsy
1685
1759
George Frederick Handell
epilepsy
1732
1799
George Washington
learning disability
1743
1826
Thomas Jefferson
learning disability
1746
1828
Francisco Goya
hearing impairment
1751
1836
James Madison
epilepsy
1769
1821
Napoleon Bonaparte
epilepsy
1770
1828
Ludwig Van Beethoven
bipolar, hearing impairment
1788
1824
Lord Byron
epilepsy
1795
1821
John Keats
mental illness
1805
1875
Hans Christian Anderson
learning disability
1809
1865
Abraham Lincoln
depression
1809
1849
Edgar Allen Poe
epilepsy
1809
1892
Lord Alfred Tennyson
epilepsy
1810
1856
Robert Schumann
bipolar depression
1812
1870
Charles Dickens
mental illness, epilepsy
1813
1855
Soren Kierkegaard
epilepsy
1821
1880
Gustave Flaubert
epilepsy
1821
1881
Fyodor Dostoyevski
epilepsy
1822
1895
Louis Pasteur
learning disability
1828
1910
Leo Tolstoy
mental illness
1833
1896
Alfred Nobel
epilepsy
1840
1893
Peter Ilyich Tchaikovsky
epilepsy
1847
1931
Thomas Edison
hearing impairment
1847
1922
Alexander Graham Bell
learning disability
1853
1890
Vincent Van Gogh
bipolar depression, epilepsy
1856
1950
George Bernard Shaw
learning disability
1856
1925
Woodrow Wilson
dyslexia
1863
1941
Henry Ford
learning disability
1867
1912
Wilbur Wright
learning disability
1874
1965
Sir Winston Churchill
bipolar depression
1879
1955
Albert Einstein
learning disability
1882
1941
James Joyce
visual impairment
1882
1949
Franklin D. Roosevelt
polio
1882
1941
Virginia Woolf
bipolar depression
1896
1940
Scott F. Fitzgerald
learning disability
1899
1961
Ernest Hemingway
depression
1901
1966
Walt Disney
learning disability
1908
1979
Nelson Rockefeller
dyslexia
1911
2004
Ronald Reagan
hearing impairment
1917
1963
John F. Kennedy
learning disability
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This list contains many world religious and political leaders including eight American Presidents! It reads like a “Who’s-Who” of art, poetry, literature, philosophy, music, military history and invention. It is interesting that epilepsy is the most frequently listed impairment. Of course, due to the lack of medical knowledge at the time, historical records would not include diagnoses as we know them today. The designation “epilepsy”, then, may be the result of inferences made by the historian. Just the same, it also should be noted that this list is in no way exhaustive. (The author compiled the list by extracting well-known historical names from the Tampa Bay Mayor’s List.) It is also clearly biased in favour of white and male personages.11
The question is often asked: What contributions can a person with disability make to society? This list turns that question on its head. Indeed, it is difficult to find a sphere where contributions have not been made! Nevertheless, the implications for persons with disability are considerable. The question is often asked: “What contributions can a person with disability make to society?” This list turns that question on its head. Indeed, it is difficult to find a sphere where contributions have not been made! Famous or ordinary, persons with disability are needed—they are valuable, contributing citizens.
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Continuing with the “disability is” theme, we will now turn to other faces of disability. Remember, each of these represents a separate facet of the diamond, a slightly different way to look at disability.
Disability is social dis-ease Person first language
The purpose of person first language is to place the emphasis on personhood rather than on disability.12 In other words, the focus becomes who a person is, rather than what condition a person has. The rationale is that by affirming a person’s humanity and citizenship first, disability will be put in its place (as part of but not fully defining the person). When we say “Judy is disabled,” we impose a totalizing label—disability becomes a master status. To counter this, person first language recommends we say “John is a person with paraplegia” instead of “John is a paraplegic”; “Mary has a learning disability” rather than “Mary is learning disabled”; or “Steve communicates with his eyes/device” in place of “Steve is non-verbal.” Other recommendations language are: 1)
for
preferred
To avoid terms that are emotional, sensationalistic or that evoke pity. For instance, “He suffers from…”, “She is a victim of…” or “They are afflicted with…”
2) To refrain from using words that are generally considered offensive by the disability community: handicapped, crippled and retarded. The origin of the word “handicapped” is that of a beggar with a cap in hand. In its place, it is suggested that we use the expression “accessible.” For example, “accessible washrooms” or “accessible parking.”
3) Do not say “He is wheelchair bound” or “She is confined to a wheelchair.” The wheelchair is liberating not confining because it enables the person to get around and participate in society. 4) Do not use the term “normal.” Instead say, for instance, “children without disabilities.” The discussion regarding the appropriate lexicon to use with respect to persons with disabilities has been hotly debated since the 1980’s. Professionals in, for example, rehabilitation, social work or education have worked towards the development of explicit guidelines and “preferred language.”13 On the other hand, some disability communities strongly reject person first language.14 They note that person first language was developed by professionals without consultation with disabled persons!15 Blind sociologist Dr. Edwin Vaughn argues that the awkwardness of people first language actually results in greater focus being placed on disability.16 However, perhaps most importantly, there is no proof that person first language results in attitude change towards persons with disability . Disability scholar Bill Hughes wryly comments, “When people feel they have to make a claim to humanity, they are usually already in big trouble!17” Disability etiquette
When people feel they have to make a claim to humanity, they are usually already in big trouble! –Bill Hughes (2009) Disability scholars forward various explanations for this social dis-ease. Here are a few: FEAR Disability reminds us of our own vulnerability and human frailty.18 EXCLUSION Persons with disability have not been included in mainstream society. As a society, we are simply not used to interacting with disabled persons. THE IDEALIZED BODY Our obsession with squeaky-clean and proper bodies. We spend billions of dollars a year on products that sanitize, camouflage, or restore our bodily “imperfections.” We are not comfortable with bodies that do what bodies do—grow hair, perspire, menstruate, ejaculate, flatulate, defecate, urinate, age… You may say, “We know all this. Did you have to list them?!” That is the point. These natural processes are unmentionables. Bodies that cannot be disguised, hidden or fixed unwittingly break this social taboo.19
Although respectful language is important, the heart of the issue is not really what language to use, but rather, that many non-disabled persons feel awkward and uncomfortable with disabled persons. What do you say? What do you do?
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The result is a certain embarrassment for both persons with and without disability. Disability etiquette has emerged as a tool to help us through this social discomfort. The chart on the following page, The Ten Commandments of Disability Etiquette, outlines some of the most common advice.20 But first, disability etiquette from a wheelchair user’s perspective!
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The Ten Commandments of Disability Etiquette
1 2 3 4 5 6 7 8 9
10
Treat people with disabilities with the same respect and consideration that you ave for everyone else: smile, shake hands, say hello, make small talk, don’t stare. Introduce yourself and your companions to blind persons. Avoid actions and words that suggest the person should be treated differently. Don’t assume disabled people need your help. Ask before doing. Adults with disabilities want to be treated as independent people. Even more, consider this: people with disabilities may be able to help YOU.
Always talk directly to the disabled person rather than to the companion or interpreter who may be accompanying him. Never talk about the person with disability to the person he is with as if the person does not exist. Treat adults as befitting adults. Let the person decide what they are able to do; don’t assume she cannot participate in certain activities.
Place yourself at eye level when speaking with someone in a wheel chair or on crutches. Or, alternatively, stand at a distance so she is not straining to look up at you.
Respect the boundaries of persons with disability. This includes the right to privacy (Can you imagine complete strangers asking you, “What’s wrong with you?”) as well as personal space (Do not lean on, jostle, push or lift a wheelchair). Be careful with respect to physical contact. Some persons need their arms for balance. Grabbing an arm, even to assist, could cause a fall. Don’t demean or patronize a person by patting him on the head. Hugs can be uncomfortable for persons with pain related disabilities. Talk normally. Don’t yell or speak as if you are talking to a child. A blind person can hear you, as can persons with various communication difficulties and a loud voice distorts the sound for persons who are hard of hearing. Look directly at the person, listen attentively, do not interrupt or finish the person’s sentences. If necessary, repeat the statement using different words. Relax. It’s okay to use common expressions such as “see you later” or to invite a person in a wheelchair to “go for a walk”.
Check your assumptions! Don’t assume that disability is a tragedy. Persons with disability lead full and productive lives.
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Why is there a need to learn person first language and disability etiquette in the first place? In a society without discrimination, both would be moot! It is important to ask the question: Why is there a need to learn person first language and disability etiquette in the first place? In a society without discrimination, both would be moot! Respectful language and behaviours are always welcome. However, person first language and disability etiquette do not disable the process of “othering” (the “we”/“them” divide). Rather, they reinforce it: This is how we (non-disabled people) should talk to and act towards them (disabled people), as if there were necessary and clear distinctions. According to social justice advocates, this is the pitfall of political correctness: The danger of leaving underlying social structures unchanged.
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Disability is a label Similarly, there is considerable debate surrounding the process of diagnosis. The main concern is that the diagnosis or “label” serves as a “marker” for disability resulting in the stigma, othering and dehumanizing practices discussed above. Who among us wants to be defined by our impairments, for example, “the appendicitis in Room 307, the CA (cardiac arrest) down the hall”?21 In all truth, we cannot minimize the reality of stigmatization for persons who are “labeled.” It is very clear in the literature that the biggest barriers to full participation in society for persons with disability are not personal limitations but rather the negative attitudes of others.22
DISABILITY MATTERS:
Against Stigma—Putting A Face On Mental Illness CBC News Viewpoint | May 11, 2005 Anna Quon Stigma may not be the best word to use, according to Carol Tooton, executive director of the Canadian Mental Health Association (CMHA) Nova Scotia Division. “People like to use the word stigma but I think it’s a polite linguistic way to justify prejudice and discrimination,” says Tooton. She prefers the term “discrimination” because it is “a word we can all connect to.” Language around mental illness is a hot topic for people like Tooton who care about the way mental health consumers are seen by society. But for Maureen O’Connell, a planning and development officer with the Nova Scotia Advisory Council on the Status of Women, stigma is a meaningful word. “To me, stigma is like a social leprosy” that affects the way people see and treat mental health consumers.
Anna Quon is a freelance writer and mental health consumer living in Dartmouth, Nova Scotia. A former assistant to the editor of the now defunct Ability Network magazine and a frequent contributor to Abilities magazine, she has a strong interest in the stories that matter to people with disabilities
And according to a fact sheet on stigma put out by the Canadian Mental Health Association of Ontario, “how others judge them is one of their greatest barriers to a complete and satisfying life.” The same fact sheet says that people have been denied adequate housing, loans, health insurance and jobs due to a history of mental illness. According to clinical psychologist and University of Chicago psychiatry professor Patrick Corrigan, quoted in Schizophrenia Digest magazine, police may overreact to people with mental illness, and even health-care providers may be influenced by stigma. According to some studies he cites, people with schizophrenia who develop a heart condition are five times less likely to be referred to a cardiologist. O’Connell, an Inspiring Lives award-winner, likens stigma to “a big cloud that hangs over your head,” and she should know. When bipolar disorder derailed her at the beginning of her career in law, she ended up on social assistance and, because of her mental illness, had trouble finding an apartment. Since then she’s spent a good part of her working life on improving human rights protection for mental health consumers, and challenging people when she can on negative stereotypes around mental illness. Perhaps the most painful thing about stigma is the way it can reduce family relationships, friendships, and self-esteem to a pile of rubble. This last thing, I can relate to. I still have the vestiges of “internalized stigma” hanging on to my sense of self, after years of poor mental health and, thankfully, years of healthy recovery, which has allowed me to be a productive, contributing member of society.
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Nevertheless, diagnosis is critical for the following reasons: 1) In order to obtain appropriate medical treatment and all related health-care services 2) In order to access other services: • community and personal disability supports such as: o technical equipment o human support o medications o accessible transportation o adaptive technology o accommodations in the workplace and in education • disability assistance/benefits • government sponsored programs 3) In order to legitimize disability for o insurance claims (compensation) o Human Rights claims 4) In order to legitimize/validate an invisible disability for yourself as well as others in your social network. In other words, labels serve, largely, as an administrative category to determine who is eligible for services and who is not.23
Disability is a restriction in activities Statistics Canada collected information about persons with disabilities in the 2001 Participation and Activity Limitation Survey (PALS).24 The intent was to gain a profile of disability in Canada that would help “all levels of government, associations, researchers and non-government organizations to support the planning of services needed by persons with activity limitations in order to participate fully in society.”25 PALS defines disability this way: Disability is when a person’s “everyday activities are limited because of a condition or health problem.” (PALS, 2001)
The types of disabilities identified by PALS include: Hearing Speech Agility Learning Developmental
Seeing Mobility Pain Memory Psychological
The British Columbia Ministry of Housing and Social Development has recently (2009) adopted the PALS definition of disability.26
Some Statistics • The disability rate is 12.4% in Canada and 14% in British Columbia. • Among aboriginal Canadians it is over 30%. • Disability increases with age. • Mobility (10.5%) and agility (9.7%) problems affect the largest percentage of adults. • Pain is the most common disability among working age adults (8.3% of women; 6.7% of men). • Many disabilities are invisible, including: pain, learning, memory and mental health. • Persons with disabilities have double the unemployment rate of persons without disabilities. (Ministry of Human Resources, Province of BC, 2002) • 22% of Canadians with disability live below the poverty line, compared to only 12% on the non-disabled population. (HRDC, 2000) • 10% of Canadians report that they were unable to take work-related training because a disability prevented them from doing so. (Stephens, 2007) • Approximately 50% of Canadian adults with disabilities experience literacy barriers. (Movement for Canadian Literacy, 2004) • People with disabilities make up a disproportionate amount of the 48% of Canadian adults who function at the two lowest literacy levels. (Movement for Canadian Literacy, 2004) • 67% of women with disabilities have been physically or sexually assaulted as children. (NSILC, 1999) • Persons with disabilities are more likely than others without disabilities to be subjected to acts of crime, violence and abuse that are prohibited by criminal and civil law. (NSILC, 1999) -22-
Disability is being thought unable to work In Canada, the first compensation for injured workers was offered in 1914 by the federal government. Then, in 1940, the Unemployment Insurance Act, Canada’s first federal welfare program, came into being27 with the goal of providing assistance to those members of society who were considered unable to support themselves. Therefore, there is a long history of linking impairment with a person’s inability to work—in other words, of defining disability as unemployability.28 Even today, one of the qualifying criterion for Canada Pension Plan disability benefits is that the person can no longer work.29 “Unable to work” are the only required words on a doctor’s note when requesting a disability/sick leave in the workplace! This has resulted in a common misconception that persons with disability are either unable or unwilling to work. Yet, studies suggest the vast majority desire paid employment and can work when given appropriate support and accommodations.30
“
An individual’s ability to function in society and to be employed depends as much on the openness of society to accommodate people with their differences as on the specific functional limitations that identify a person as ‘disabled.’
”
–HUMAN RESOURCES DEVELOPMENT CANADA, 2000
Disability is good business Not only do persons with disability contribute to the economy through employment, but also in their “spending power” as the largest single minority group—in the United States this is estimated to be one trillion dollars!31 Yes, you read that correctly: one trillion dollars. In Canada, it is estimated to be 25 billion dollars.32
This does raise concern for many that persons with disability can be treated as “commodities that can be bought and sold.”35 Undoubtedly, we need to guard against a mentality that would put “profit before people.”
From another point of view, the human service industry is a major provider of employment for Canadians. The “disability business” is a multi-million dollar business.33 Jobs in the health care and social assistance sector are increasing and represent 10.7% of the total Canadian labour market. If you factor in researchers, doctors, pharmaceutical companies, manufacturers/ distributers of technical aids and educators who specialize in “special needs”, among others, the “disability business” employs more people than any other industry!34
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Disability is a protected ground in the Canadian Charter of Rights and Freedoms Canada is the only country whose Constitution (the highest law) protects the rights and freedoms of persons with disability. It reads: 15. (1) Every individual is equal before and under the law and has the right to equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.36
Disability is a culture/identity By rejecting traditional views of themselves as incapable, powerless and passive, the political activity of disabled persons provided the foundation of a disability identity.37 There is evidence that individuals who say they are proud to be a disabled person have higher levels of personal satisfaction, selfdetermination and self-esteem. They do not view disability as shameful and inferior, and this directly effects their life satisfaction.38 Disability arts play a valuable role in fostering a vital disability culture. Drama, dance, music, poetry, songwriting and visual arts are used to challenge stereotypes and negative images of disability by creating images of strength and pride. Consider the following poem by Colin Cameron from Tyneside Disability Arts39: Sub Rosa
Fighting to establish self-respect… Not the same, but different… Not normal, but disabled… Who wants to be normal anyway? Not ashamed, with heads hanging, Avoiding the constant gaze of those who assume That sameness is something to be desired… Nor victims of other people’s lack of imagination… But proud and privileged to be who we are… Exactly as we are. Furthermore, a positive disability identity affirms the many benefits of disability: increased empathy/compassion; freedom from having to conform to society’s expectations; creativity and problem solving (necessity is the mother of invention); insight into the human condition; and an enhanced appreciation for the small things in life.40
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The face of disability
Your face here
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Disability is a characteristic of being human The World Health Organization’s (WHO) most recent definition of disability is provided in the International Classification of Functioning, Disability and Health (ICF).41 WHO researchers say that they embraced the “principal of universalism” from the ground up.42 They explain:
The (ICF) is a clarification of human function and disablement, it is neither a classification of persons with disabilities, nor of attributes of persons with disabilities. It provides the essential language and structure for scientific investigations of the consequences of health conditions in the human population. In this sense, functioning and disablement are understood as co-equal aspects of health, rather than polar opposites—normality and deviation or health and morbidity. Disablement as captured by the (ICF) is an intrinsic feature of the human condition, not a difference that essentially marks one subpopulation off from another.43
The world does not consist of ‘normals’ and ‘the disabled’; it consists of people, all of whom experience impairment at some time(s) in their lives. This approach has the potential to put to rest the “us” and “them” thinking that is behind much of the discrimination faced by persons with disability. Its very assumption is that the world does not consist of ‘normals’ and ‘the disabled’; it consists of people, all of whom experience impairment at some time(s) in their lives.44 Listen to what others say on the subject:
“(Disability)… is perhaps the essential characteristic of being human. The body is dynamic, constantly interactive with history and environment. We evolve into disability. Our bodies need care; we all need assistance to live.”45
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“To experience disability is to experience the frailty of the human body... the experience of ageing, of being ill, of being in pain, of physical and intellectual limitations, are all part of the experience of living.”46 “The issue of disability for individuals...is not whether but when, not so much which one, but how many and in what combination.”47 “The boundaries of disability as a category are permeable, and though we may not be members now, we are all ‘temporarily able.’”48 Disability is a dynamic interaction between health conditions (diseases, disorders, injuries, traumas, etc.) and contextual factors (personal and environmental factors).
Disability is a vantage point to launch inquiry Just as Women’s Studies has changed our approach to research and the kinds of questions asked, disability is a lens through which we can look at the way we look at the world. There are many challenges to disability health research. The disability experience is wide and varied comprising: early/adult onset, permanent/episodic/progressive, healthy/chronic, and visible/invisible disabilities. Some say that the population of persons with disability has as much in common with each other as they do with individuals in the entire population (HRSDC, 2002)! To these differences, we find the intersection of sexism, racism, ageism, classism, heterosexism, beautyism, etc. with ableism. There are also multiple approaches to disability that confound matters. It is interdisciplinary, international and also faces modern-postmodern tensions. Moreover, there is the issue of multiple “agendas” or multiple audiences—how do we negotiate the relationships between activism/academia and policy/practice? In Canada, the picture is further complicated by provincial/federal inconsistencies—each province has its own policies, definitions and programs for disability (HRSDC, 2002). We will turn to the contributions disability health research can make in addressing these challenges in the section that follows.
S ECTION TWO
Disability Health Research
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The many faces of disability health research One thing is abundantly clear when we begin to consider disability health research— it gets complicated! We come from different cultures (organizations, disciplines, associations); we speak different disability “languages” in and from those cultures; we look at disability through different lenses; we ask different questions and we have different foci.
model may have no idea that there even is such a thing as a “medical model.” They do not use that terminology. What is important to understand is that the social model grew out of the Disabled Persons Movement (DPM)—a coalition of persons with impairment who joined together with other like-bodied individuals to fight for human rights, inclusion and equality.49
Nevertheless, what we share is our interest in and commitment to disability health research. Most of us are vested—we care deeply about the issues for and persons with disability.
Therefore, the language used by social model theorists tends to be oppositional. As a good friend used to say, “Them’s fightin’ words!”
A particularly difficult discussion concerns the two prominent models of disability: the medical model and the social model. The challenge here is that the whole purpose of the social model is to contest the medical model. It is supposed to “rattle a few cages,” as they say. Meanwhile, health practitioners and researchers operating from the medical
Most of us are vested— we care deeply about the issues for and persons with disability. -29-
On a personal note, as a nascent disability scholar, in undertaking this primer I believe that I have a huge responsibility to the Disabled Persons Movement to “get it right.” I do not want to misrepresent the social model in any way. While re-presenting the view points of other people is always tricky, here there is the very real potential of furthering discrimination towards disabled persons in the process of trying to contest it. Therefore, I made the decision to present the social model in its strongest form and to deliberately include the voices of disabled activists. These are strong arguments and strong words. However, I feel that I do a disservice to the DPM to soft pedal them. My hope is that the voices will be heard and not simply dismissed without reflection.
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Another piece that is important to note is the sordid history of research on persons with disability. It is a history that is largely hidden. Perhaps, as a society, we do not want to remember it, we think, “It’s best left alone.” Nevertheless, understanding this history is central to understanding the social model and from whence it springs.
A visual history This section will begin by presenting a brief visual history of early disability based “science.” Second, the medical and the social models of disability will be considered and reflected upon. Several of the research projects supported by the Disability Health Research Network will be highlighted. These studies were selected in order to represent something of the heterogeneity of disability health research. You will see the research of an artist, social worker, nurse, occupational therapist, engineer and medical doctor. Issues that are often addressed in disability health research will be discussed as they arise in the studies that follow.
This section will begin by presenting a brief visual history of early disability based “science.”
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An encyclopedic collection of rare and extraordinary cases, and of the most striking instances of abnormality in all branches of medicine and surgery, derived from and exhaustive research of medical literature from its origin to the present day. Abstracted, classified, annotated, and indexed.
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But even to such, no less than to the most naïve-minded, the strange and exceptional is of absorbing interest, and it is often through the extraordinary that the philosopher gets the most searching glimpses into the heart of the mystery of the ordinary.
In monstrosities and dermoid cysts, for example, we seem to catch forbidden sight of the secret work-room of Nature, and drag out into the light the evidences of her clumsiness, and proofs of her lapses of skill.
In our day the taste seems to be insatiable, and hardly any medical journal is without its rare or “unique” case, or one noteworthy chiefly be reason of its anomalous features. p.2
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What are the principles and the limits of compromise between conservation and elimination in cases of individuals bearing a germ-plasm with a mixture of the determinants for both defective and sterling traits? What are the criteria for the identification of individuals bearing defective germplasm? What can be hoped from the application of some definite elimination program?
Devoted to the care, training, treatment and instruction of the mentally and physically defective classes
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IDENTIFICATION—Intelligence Testing Lewis Terman refined the original Binet-Simon intelligence test at Stanford University creating the still widely used Stanford-Binet intelligence scale. In his 1916 essay The Uses of Intelligence Tests, he argued that the diagnosis and classification of “troublesome” cases in education such as “the feeble-minded, the physically defective, the merely backward, the truants, the incorrigibles, etc…. were crucial for effective educational programming.” However, he goes on to say: “It is safe to predict that in the near future intelligence tests will bring tens of thousands of these high-grade defectives under the surveillance and protection of society. This will ultimately result in curtailing the reproduction of feeble-mindedness and in the elimination of an enormous amount of crime, pauperism, and industrial inefficiency. It is hardly necessary to emphasize that the high-grade cases, of the type now so frequently overlooked, are precisely the ones whose guardianship it is most important for the State to assume.”
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SEGREGATION—The Asylum The first facility in Canada in 1876, originally known as the Orillia Idiot Asylum. “There is only one thing to do for idiots, imbeciles, and the very low-grade morons, and that is to place them in institutions where they can live out their helpless, hopeless existence in reasonable bodily comfort.”50 “Some idiots can be made self-supporting, just as an animal can be. I can take a horse and make it earn money, but it cannot earn money for itself. I can make an idiot earn money for me but he cannot earn it for himself. I can protect that idiot, as I can a child, but the idiot cannot protect himself… For this reason idiots have to be collected together, under the charge of trained attendants, and held for life.”51
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EUGENICS—Sterilize the Unfit Sterilize the Unfit—Dr. Clarence Hincks director of Canadian National Committee on Mental Hygiene (CNCMH) (1946) “Subnormality and mental unfitness seem to be on the increase in Canada … We can expect the percentage to mount unless we act soon to improve the mental quality of our stock. For the mentally unfit are apparently breeding faster than the fit, and will continue to do so until we prevent those with undesirable hereditary traits from passing their disabilities on to their children… We have abundant evidence in Canada that the free propagation of mental subnormals is carrying us far in the direction of race deterioration. It is my conviction that highly selective eugenical sterilization should be part of our expanding health programs in the Dominion.”52
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Looking back in order to look forward The images presented in the Visual History are disturbing. They assault our sense of decorum; they offend our contemporary sensibility. The language used in the scientific discourse, the diagnostic labels themselves seem far from neutral: “anomalies,” “curiosities,” “monstrosities,” “feebleminded,” “defectives,” “degenerates,” “idiots,” “imbeciles,” “morons,” “unfit,” and “subnormals.” History is instructive—it reveals and challenges, taunts and teaches. It is clear that disability was viewed only as a “problem.” We see how charitable organizations gave way to emerging professions. We can observe how disability was conceived as a challenge to law and order and that researchers fully embraced a social control function.53 Power relationships and abuses of power are undeniable.
Ethical questions raised • Who benefited from this research? • How did the persons photographed or “identified” feel about their participation in this research? What impact or unintentional consequences did this have on them? • In what way did the belief/value systems of the time and the socio-historical context influence the research process? • Who decided what was important to study and why? • What are the relationships of power? What power dynamics are at play? These are the kinds of questions that prompted a re-examination of the ways we do research by social model theorists.
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The “Medical Model” The “medical model” of disability is the term given to the general attitudes towards disability resulting from the rise of the professions (especially science and medicine) in the last century. It is interesting to note that medical professionals themselves neither coined nor defined the expression; rather, it grew out of the dissatisfaction of persons with disability with their treatment by professionals. For instance, in the influential pamphlet Fundamental Principles of Disability (1976) British disability activists wrote:
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We reject the whole idea of ‘experts’ and professionals holding forth on how we should accept our disabilities, or giving learned lectures about the psychology of impairment. We already know what it feels like to be poor, isolated, segregated, done good to, stared at, and talked down to—far better than any able bodied expert. We, as a Union, are not interested in descriptions of how awful it is to be disabled. What we are interested in is the ways of changing our conditions of life, and thus overcoming the disabilities which are imposed on top of our physical impairments by the way this society is organized to exclude us… We look forward to the day when the army of ‘experts’ on our social and psychological problems can find more productive work to do.54
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“
Historically, disabled people have been objects of study but not purveyors of the knowledge base of disability.
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–SNYDER AND MITCHELL, 2006
Megan Kirshbam, peer counselor at Center for Independent Living, Berkeley, 19741982, founder and executive director of Through the Looking Glass, 1982 and parent of a disabled child, remarks on what she calls a “pathology-oriented approach” to persons with disabilities and their families:
Well, I just felt a lot of the approaches to families and to disabled babies were very pathological in focus. I think that it was because it was based in the medical model and a way of thinking that was pathology-focused. A lot of things people would experience with their babies—and that I was experiencing with my baby— were assessments where they would look for what was wrong with your baby. They didn’t look at who your baby was as a little person, or what was wonderful about your relationship with your baby or something. They looked at what part of his body wasn’t functioning right, or what kind of deficits did he have, or how might his body become more abnormal in time. Very pathology-focused. …We talk about disability spread when we talk about disability theory. Pathology tended to spread to the family system too, so that they would kind of look at the parents through a pathology lens too. They might be very funereal with the parent when the parent wasn’t really feeling funereal about their baby. Or they
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might interpret a parent who just had a lot of reason to be anxious because they’d been traumatized—maybe they’d just been through the heart surgery of their baby or something—as having an anxiety problem. That’s what I mean by pathologizing. So, when I started Through the Looking Glass, I wanted us to have a nonpathological orientation in our work. (University of California, Berkley, 2004) Disability activists challenge the hegemony of the medical model which operates as if its understanding of disability is the only “natural” and true approach. The term “medical model” is used interchangeably with such descriptors as: traditional, individualist, impairment, rehabilitation, biomedicine, personal tragedy, and personal deficit approaches to disability.55
Characteristics of the medical model • The assumption underlying this model is that “biology is destiny,” that a person’s life chances are determined by his/her inborn aptitudes and limitations.56 • Impairment, illness and abnormality are seen as intrinsic problems of the individual.57 Therefore, the cultural response to impairment is that it is interpreted as a personal tragedy.58 • Disability is defined by biomedicine with respect to physical or mental deviation from the norm and its main concern is the “detection, avoidance, elimination, treatment and classification” of impairment.59 Treatment practices, then, such as rehabilitation, attempt to fix the person or to help them to return to a life “as near normal as possible”.60 • The medical model places the onus on disabled people to adapt to society.61
The “Social Model” The social model of disability grew out of the experiences of persons with disability and their frustration with what they saw as the individualistic, pathologizing, objectifying, deterministic and marginalizing nature of the medical model! From its inception, the goal of the social model was to politicize disability.62 From the perspective of the social model, exclusion and marginalization are not consequences of an individual’s impairment. Rather, they are consequences of social discrimination. Likewise, disability does not refer to bodily impairments and limitations; it is the naming of the experience of oppression. Rather than a focus on “fixing” people with disabilities, disability rights activists direct attention to the disabling effects of a normalizing society.64 In other words, persons with impairments are not disabled by their impairments, but by society.65 The onus changes from the necessity of the individual to adapt to society, to that of society adapting to the individual. Jenny Morris66 offers the following examples:
A disabled person might say, therefore, “My impairment is the fact that I can’t walk; my disability is the fact that the bus company only purchases inaccessible buses.” Or, “My impairment is the fact that I can’t speak; my disability is the fact that you won’t take the time and trouble to learn how to communicate with me.” The social model of disability opens up opportunities to make a difference to people’s lives by focusing on things which can be changed. The major difference in social model assessment is that instead of asking, ‘What is wrong with this person?’ it asks, ‘What is wrong for this person?’ The goal of social model assessment, therefore, is “the identification of disabling barriers.”67 We see the impact this kind of thinking has for disabled people:
It wasn’t my body that was responsible for all my difficulties. It was external factors, barriers constructed by the society in which I live. I was being dis-abled—my capabilities and opportunities were being restricted—by prejudice, discrimination, inaccessible environments and inadequate support. Even more importantly, if all the problems had been created by society, then surely society could un-create them.”68
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Mulling over the models From the above discussion of the medical and social models, it is evident that the debate is something that disability scholars and activists feel very strongly about! This can leave persons in the professional therapies feeling shocked, unsettled and even assaulted. This section will attempt to present the arguments from both sides. The goal is not to find a “winner” but, rather, to raise the issues in order to evaluate their impact on disability health research.
Hanging on history The legacies of eugenics and institutionalization have created a lingering distrust of “science” for many persons with disability. From that point of view, “scientific” research had a negative impact on disabled persons: it perpetuated, reproduced and legitimized marginalization; it justified segregation and eugenics; and it denied civil rights.69
On the other hand, many of us owe our very lives to the advances of medicine! Medical therapeutics, diagnostic advances, antibiotics/pharmaceuticals and medical equipment have extended and improved the lives of many children and young adults who would not have previously survived such conditions as leukemia, spina bifida, cystic fibrosis or spinal cord injuries.70 The irony here is striking! The growth of medical, rehabilitation, and education services meant that persons with disability became enabled, that is, well enough to become politically active. Yet, the political action of disabled activists resulted in the disabling of medical strongholds—in particular, institutionalization. One might also argue that that was then and this is now, that the social and political climate in which eugenics/institutionalization was birthed is long gone. Further, the ethical requirements of all research involving human subjects have changed dramatically over the last century. Nevertheless, disability scholars stress that contemporary bio-medical approaches to disability are deeply rooted in the logic of eugenics—the detection, devaluation and, ultimately, abolishment of embodied difference. Further, eugenics is far from dead and buried. From the human genome project to bioethicists such as Peter Singer72 who actively endorse the termination of pregnancies when abnormalities are suspected, biomedical texts present disability as errors of nature that need to be corrected and, if at all possible, prevented. Harriet McBryde Johnson, a congenitally disabled disability rights lawyer in the United States, sparred with Peter Singer in a debate a Princeton University.73
He insists he doesn’t want to kill me. He simply thinks it would have been better, all things considered, to have given my parents the option of killing the baby I once was, and to let other parents kill similar babies as they come along and thereby avoid the suffering that comes with lives like mine and satisfy the reasonable preferences of parents for a different kind of child. Peter Singer
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Harriet McBryde Johnson (1957-2008)
Undoubtedly, these are profound and difficult ethical dilemmas that call for careful consideration and debate.
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Making the mean meaningful At the heart of the matter, we find the normal/abnormal dichotomy. The question disability scholars want us to grapple with is not “What/who is normal?” but, a much deeper one: Is there even such a thing as a “normal” body? The concept of “normal” is so entrenched in the scientific worldview that this question can leave some scratching their heads: The answer seems so obvious, the question itself “abnormal”! Once again, we will turn to history for understanding.
The trouble with normal is it always gets worse! –BRUCE COCKBURN The field of statistics emerged in the mid 1800’s with the goal of obtaining data for the “promotion of sound, well-informed state policy”—the root of the word statistics is “state.”74 It was only then that words such as “norm,” “mean,” and “average” entered the European languages. What is important to note is that the science of statistics grew in prominence in a historical context with a very clear state-sanctioned agenda—to improve humanity by reducing/ eliminating deviations from the norm. It is no coincidence that most of the early statisticians were eugenicists!75 Listen to the words of prominent French statistician Aldophe Quetelet (1796-1847)76:
One of the principal acts of civilization is to compress more and more the limits within which the different elements relative to man oscillate. The more that enlightenment is propagated, the more will deviations from the mean diminish… The perfectibility of the human species is derived as a necessary consequence of all our investigations. Defects and monstrosities disappear more and more from the body. The point is that statistics is not, and never was, neutral or objective—it is enmeshed in politics, attitudes and belief systems. Swain and French write, “All research is political… and can further the oppression of those who are the subjects of research”.77
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The “mean” is a number, an abstraction and, in the sense of what is a “normal” human being, an “ideal.” The “average man” does not actually exist! “He” or “she” is merely a statistic. Here is a more concrete example: “According to the U.S. Census Bureau, the average family size is currently 3.14 people.”78 Have you ever seen a family consisting of 3.14 people?! Normal is a range, a distribution, a plurality. Every bell curve has at either end characteristics that “deviate” from the norm. Deviations are normal. It is at this point that we see the intellectual bias of the early statisticians; they wanted to “norm the nonstandard”79 instead of allowing that the nonstandard is part-and-parcel of the bell curve of normal distribution. The bell curve itself and the mathematics behind it is impartial. How we interpret and apply it is not. James Wilson80 writes,
If genomics…were to more effectively emphasize the normality of variation, the fact that human variation is a continuous spectrum, then surely there would be a better understanding and acceptance of disability. However, I want to make it perfectly clear, I do not believe that we should “throw the baby out with the bath water,” as they say. There is a place for statistics in disability research. I have devoted a great deal of space to challenging the use of statistics because it is so often left unchallenged! Statistics are “contestable but indispensable.”81 They are particularly invaluable in macro level demographic and economic analysis as well as in what are called the “hard” sciences. At a very practical level, the use of statistics attracts funding for research. Furthermore, the language of statistics is widely used in society; it can help researchers to translate their findings in a way that is understandable to non-researchers.82 The challenge is to include an accountability in our analysis that recognizes that statistics can “serve as a political tool in the theatre of persuasion.”83
In theory, there is no difference between theory and practice, but in practice there is a great deal of difference.
Socializing the individual/ individualizing the social The primary problem that social model scholars find with the medical model is that the focus remains on fixing the individual rather than on the social factors that “disable” persons with impairment.
Like deficit theory as an explanation of poor educational attainment, like sickness as an explanation of criminal behaviour, like character weakness as an explanation of poverty and unemployment, and like all other victim blaming theories, personal tragedy theory has served to individualize the problems of disability and hence leave social and economic structures untouched.84 However, the social model became criticized for being “over-socialized” since it denied any consideration of the individual.85 WHO researcher Jerome Bickenbach states it this way:
Rightly criticizing the medical model for swallowing up the extrinsic into the intrinsic (and turning a socially constructed disadvantage into a problem with a person’s body or mind), they went to the other extreme and brought into the extrinsic side all human activities.86 Phil Lee agrees:
…Medical diagnoses and interventions are so extremely important for the management and maintenance of some disabling conditions. It must be appreciated that we cannot simply dispense with medicine. Radicals still have to be able to conceptualize individual actions and individualized interventions; they cannot simply be ‘magic-ed’ away.87 Just the same, if you analyze biomedical research as well as the portrayal of persons with disability in the media, it is clear that disability is still fundamentally conceived of as an individual problem.88 Moreover, even when social factors are acknowledged, for instance British Columbia’s employment strategy for persons with disability, intervention still is largely directed towards changing the individual.89 Disability scholars claim that this is the result of the ableism that is still deeply entrenched in society: in social structures (politics and economics); as well as in individual attitudes.
As you can see, disability research gets complicated! Actually, that is the goal of social critique—to trouble our taken-forgranted views. The social model troubles, among other things, the belief that professionals are the “experts”; that the end results of research are always good; that disability needs to be fixed; that disability is a tragedy; that science is objective; and the whole question of what is “normal.” So, if you feel troubled by the social model, it has done its job (and I have done mine). You are in good company. Each researcher wrestles with questions of ethics. Each project is different—there is no one-size-fits-all solution. Some questions remain dilemmas. The debates continue. And they should continue, lest we lose sight of the people affected by our research. Even within the disability community, there are different perspectives on disability research. At one extreme, researchers have been called “parasite people”90 who could lapse into the “rape model of research.”91 At the other are many “survivor” or “biosocial” groups organized around their “condition” in order to increase public awareness and promote medical research regarding that “condition.”92 There are no easy answers. In the studies that follow, you will see the ways these researchers have tried to address some of these questions.
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I have yet to see any problem, however complicated, which, when you looked at it the right way, did not become still more complicated.
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–PAUL ANDERSON (1926-...) -47-
Exploring the World of Developmental Disabilities and the Arts Sara Lige, a 2008 intern for the Disability Health Research Network, started the nonprofit organization Cool Arts in 2003 when she could not find any art classes for her son Jordan (pictured above with his Mom). Sara emphasizes, “Cool Arts is a piece of a much, much bigger picture—it’s about art being part of the human experience, it’s about community inclusion and it’s about expressing oneself. Access to the arts is a fundamental human right.”
In November 2009, an exhibition entitled We Are Artists opened at the Kelowna Art Gallery. We Are Artists, curated by Sara Lige, features the art of 13 Cool Art painters. Each artist created a self-portrait composed of three objects—a canvas, a chair and a pair of shoes.
For artists with an intellectual disability, art is not about producing pleasurable illusions in the tradition of Western realism–it is an essential tool in representing their experiences and their responses to the world. –Daye, 1998 -48-
For her research, Sara videotaped the artists as they worked and then later interviewed them. “By documenting the artists in this way, I can show that they have an authentic and genuine art-making experience,” she explains. “It is my hope that my research will help to establish that artists with developmental disabilities are creative people with the ability to express themselves in the visual arts. Their artwork shows their way of understanding the world.”
“Plain language” is effective communication. It means getting the information to the right people in the best way in the clearest manner. It means listening and responding appropriately to the needs of the public. And it means being sensitive to the issues of literacy and its relationship to empowering people who may have been discriminated against or sidelined by a tangle of “bureaucratese.” (Ruth Wilson, Simon Fraser university)
One noteworthy element of Sara’s research is that her report is written in plain language. Before it was published by the Kelowna Art Gallery in the We Are Artists exhibition catalogue, Sara asked two self advocates to read her paper for comprehensibility. Sara’s essay is included below as an example of how research can be reported in plain language.
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Kelowna Art Gallery | Cool Arts We Are Artists | Guest Curated by Sara Lige We Are Artists was a collaborative project between the Kelowna Art Gallery, and Cool Arts Society in 2009. It was an honour to host this exhibition in our community-based gallery The Front project space, as we have been working with adults with developmental disabilities at the Kelowna Art Gallery since 2002. We have also had the opportunity to watch many of these artists develop their skills and talents over the years. We Are Artists was a progressive project, as work by artists with development disabilities is rarely exhibited in public art galleries. This exhibition was very exciting for us, as it has opened doors to developing new relationships with the disability community. It has also provided us with opportunities to develop new arts programming, and foster an inclusive gallery environment for adults with developmental disabilities in our community. Renée Burgess Head of Public Programming The following essay is an excerpt from the We Are Artists exhibition catalogue published by the Kelowna Art Gallery in 2009.
Exploring the World of Developmental Disabilities and the Arts We Are Artists, Kelowna Art Gallery, 2009 SARA LIGE
The We Are Artists exhibition is part of a much larger picture. For adults with developmental disabilities, the door that has been closed to so many of life’s experiences is beginning to crack open. People with intellectual disabilities have traditionally faced more discrimination that any other group in western culture. Much needed change has begun to occur in our society, even if it does so at a slow pace. This exhibition is part of that change. As founder of the Cool Arts group, I will discuss here the beginnings of the Cool Arts Society. I will also explain the connection between my own research and the We Are Artists exhibition, as well as mention some of the writers who inspired my own understanding of disability and disability arts. A few years ago, I read a notice about an art show in Vancouver of work by artists with disabilities. Artists were invited to submit proposals to the Society for Disability Arts and Culture (S4DAC). My son Jordan was eager to participate, so I helped him with the submission and he was accepted into the exhibition. Going to that show with him, which was held in the Pendulum Gallery in downtown Vancouver, and learning about what S4DAC was about was a pleasant surprise. I learned that there was an exciting disability arts movement that extended around the world. One thing led to another and in 2003, I founded Cool Arts in Kelowna with some enthusiastic art teachers, artists, and potential participants. My growing interest in Disability Arts led me back to school in 2007, when I registered as an M.A. student at University of British Columbia Okanagan (UBCO). Once my studies began, I was dismayed to find that almost all the books and articles about this subject were written from a medical point of view. These readings looked at art as a way to “help” or “fix” or “treat” people with developmental disabilities. My research, on the other hand, is about visual arts and adults with developmental disabilities, other than from a medical point of view. However, this seems to be an area where almost no research has been done. As a result, part of the work of my thesis research has been to scrape together whatever information I could find to get an up-to-date idea of what is happening in the field of arts and intellectual disabilities. To do this, I have searched in several different areas of study and discipline. I have discovered that there are some excellent art centres for differently abled artists in places like Edmonton, California, Chicago, Melbourne, and Glasgow, for example. The United Kingdom leads the way, not just in disability arts, but also in other area, like issues around disability access and equality.
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There are a number of fascinating discussions that are very helpful in gaining an understanding of the big picture of developmental disabilities and the arts. Many scholars have written about the idea of ‘normal’ and ‘abnormal’ and have challenged the normal/abnormal mode as a way of looking at our society (Davis). This mode extends far beyond the world of disability. Another area of interest to me has been Outsider Art, which is a kind of art made by untrained artists who know little of cultural history or the tradition of fine art (Cardinal). A number of writers disagree as to whether artists who are differently abled fit into this category or not. In another discussion, Tobin Siebers writes about disability aesthetics, and also argues that the time has come to separate the idea of ‘genius’ from the concept of creativity (71). Scholar Lucia Carlson writes about “cognitive ableism.” (A word that is similar to the word “cognitive” is “knowledge.”) She describes this as an attitude “in favor of the interests of individuals who possess certain cognitive abilities (or the potential for them) against those who are believed not to actually or potentially possess them.” (140) I believe that the term cognitive ableism works very well to describe what is often a common attitude in our culture. I have found it interesting to consider cognitive ableism in connection to the art world. I have also learned that I have TAB status. TAB means ‘Temporarily Able Bodied.’ Lennard Davis says that the TAB label helps to remind us of “the shaky footing on which normalcy rests.” (36) John MacGregor is both an art historian and a psychiatrist, who specializes in writing about art and people with disabilities. He has written about two artists with intellectual disabilities from the Creative Growth Centre in Oakland, California – Judith Scott and Dwight Mackintosh. These are among the first books to ever document the work of artists with intellectual disabilities in such detail. Both are excellent introductions to this subject. Currently, I am working on research with some of the Cool Arts artists. I have videotaped and observed the artists working, and then interviewed them later after watching the videotape together. This research is about the artist’s experience while they create their art, not their finished work. By documenting the artists in this way, I plan to show or demonstrate that they have an authentic and genuine art-making experience. This area of study is extremely under-researched and still needs the most basic kind of information. I hope that my work can help to change this imbalance. This work with the Cool Arts artists is a type of research called Emancipatory Research. Emancipatory Research must benefit and empower whoever is being studied. Wherever possible, the researcher must check the procedure and results with the people being researched. The disability community prefers this kind of collaborative research to traditional research that does not involve the research subjects in any decision-making. In collaborative research the researchers and the people being researched all work together. Dissemination or distribution of the research information is also an important part of Emancipatory Research. The information must be accessible and available. The We Are Artists exhibition and this exhibition catalogue will help to educate the arts community, as well as the general public, about people with intellectual disabilities in the arts. It is my hope that my research will help to show that artists with developmental disabilities are creative people with the ability to express themselves in the visual arts. Their work shows their way of understanding the world. Artists with intellectual disabilities have a unique vision to share and deserve to have equal access to the arts. “For artists with an intellectual disability, art is not about producing pleasurable illusions in the tradition of Western realism – it is an essential tool in representing their experiences and their responses to the world.” (Daye, iv) Selected References Cardinal, Roger. Outsider Art. London: Studio Vista, 1972. Carlson, Lucia. “Cognitive Ableism and Disability Studies: Feminist Reflections on the History of Mental Retardation.” Hypatia 16 (2001): 124-147. Davis, J. Lennard. Bending over Backwards: Disability, Dismodernism & Other Difficult Positions. New York: New York University Press, 2002. Daye, Cheryl. “Foreword”. The Inner View. Arts Project Australia: Principles and Practices of an Innovative Program. Melbourne: Arts Project Australia, 1998. MacGregor John. Dwight Mackintosh: The Boy Who Time Forgot. Oakland: Creative Growth Art Centre, 1990. _____. Metamorphosis: The Fiber Art of Judith Scott. Oakland: Creative Growth Art Centre, 1999. Siebers, Tobin. “Disability Aesthetics,” Journal for Cultural and Religious Theory, 7 (2006): 63-73. -51-
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A Longer Journey: An Exploration of Individuals’ with Disabilties Experiences of Employment Programs Laura Hockman, trained as a social worker, is the executive director of the Independent Living Vernon (ILV). The ILV is one of Canada’s 28 Independent Living Centres: non-profit organizations run by and for people with disabilities. Together with Dr. Rachelle Hole, associate professor in the School of Social Work at UBC-Okanagan, Laura received a DHRN sponsored Collaborative Research Exchange grant in 2006. Laura’s research investigates the experiences of persons with disability in their employment journey in the current political context that emphasizes results-based employment services. Laura conducted 12 semi-structured interviews with persons who self-identified as having a disability and who had accessed results-based employment programs in Vernon, BC. Two interrelated themes emerged from this qualitative analysis: connection and control. Additionally, the experiences detailed in this study have led Laura to a new definition of inclusion. Laura forwards, “Inclusion is people having the control to connect how they want.” In discussing the approaches that she used for her study, Laura acknowledges that they reflect her personality, her experience and her belief system. Laura’s research is informed by Pragmatist, Independent Living,93 and Emancipatory94 research paradigms.
Inclusion is…people having the control to connect how they want. –Laura Hockman The pragmatist research paradigm links the choice of approach directly to the purpose of and the nature of the research questions posed (Creswell, 2003) The emancipatory research paradigm is founded on the social model of disability. Disability scholars, particularly in the U.K., challenge the imbalance of power in traditional disability research where researchers set the agenda and are not accountable to persons with disability in terms of how the research is conducted, applied or disseminated. Independent Living (IL) is both a movement and an “analytic paradigm.” Gerben De Jong (1979) writes: “The IL movement is the clearest statement available about how disabled persons want to be viewed in American society not as passive victims needing constant professional intervention, but as selfdirected individuals seeking to remove environmental barriers that prevent their full participation in community life. Thus, Independent Living should be viewed not merely as a social movement, but also as a state of mind that should become deeply rooted in our basic understanding of disability issues.” Laura’s reflections on her ancestry also have implications for understanding disability. Laura says that she was surprised to discover that persons with disability are excluded in “white” society. In an aboriginal (Laura prefers the term “Indian”) community, disabled persons are simply part of the social fabric of life.
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Planning for Two Lifetimes: Health Work in Families of Young Children with Special Needs Jennifer Baumbusch is an assistant professor in the school of nursing at University of British Columbia. Her research background is in geriatrics and nursing care for older adults. In 2007, Jennifer was awarded a Collaborative Research Exchange grant from the Disability Health Research Network. Jennifer and Judy Lynam from the school of nursing (UBC) teamed up with Tanya Sather and Annie Wolverton from the Burnaby Association for Community Inclusion (BACI) to investigate the influence of contextual factors on health work in families with a young child with special needs. This is a topic that touches Jennifer personally—she has a daughter with a rare chromosomal difference.
When you want to change the world with your research, it’s really important to be connected with a community. –Jennifer Baumbusch
Therefore, Jennifer comes to this project as an insider, which has important implications for community based research. There is concern among service providers regarding the ethics of conducting research with vulnerable populations. Families with young children with disability are in transition. Having experienced this with her own family, Jennifer was able to bring sensitivity as well as a deep understanding of the issues to the research process. Jennifer had preexisting relationships with both BACI and the research participants. This not only facilitated the research process by creating community engagement around the project, but also directed the research questions. From the outset, the goals for the research were pragmatic: to find out the needs and concerns of families with differently-abled young children in order to serve them better. Parents and BACI staff were involved at each stage of the research process: they were represented on the project’s Advisory Committee, received emerging results and were invited to participate in a dinner and full-day workshop where the results were presented and discussed. Jennifer affirms, “When you want to change the world with your research, it’s really important to be connected with a community.” Insider research is any research undertaken with research ‘subjects’ with whom the researcher(s) has a preexisting or ongoing professional or personal relationship (IASREC, 2009).
Planning for Two Lifetimes: Health Work in Families of Young Children with Special Needs Ultimately families need: 1) Seamless access to services across the life-course, not based on or restricted to age or diagnosis; 2) Policies that facilitate greater economic support in relation to employment and tax benefits; 3) The presence and availability of social supports in an inclusive atmosphere. -54-
Photo: Dean Lastoria It is clear that things are changing as a result of the findings and recommendations of Planning for Two Lifetimes study. At the program planning level at BACI, the research reinforced the value of playgroups in order to help families develop social support systems. The study results were also used to apply for funding for a family drop-in program. A conversation has opened up with the Ministry of Child and Family Development and, finally, a new research project “Aging Together” has emerged.
member) separate. To address this, Jennifer says that she had to be candid and reflexive, to “put it all on the table”. Insider research both confronts and creates some interesting ethical dilemmas. Please see the “For Further Reading” section for a fuller discussion of the issues. The recommendations resulting from this investigation are on page 54. See the Final Report for more details.95
Nevertheless, Jennifer acknowledges the challenges inherent in wearing several hats and the importance of trying to keep her roles (researcher, parent, community -55-
Living with Chronic Illness: Meaningful Activity to Promote Health & Well-being Dr. Catherine Backman is an associate professor of Occupational Science & Occupational Therapy at the University of British Columbia and a research scientist at the Arthritis Research Centre of Canada in Vancouver. In 2006, Dr. Backman received a Participation, Collaboration and Facilitation (PCF) grant from the DHRN in order to bring together an interdisciplinary team of researchers interested in investigating the relationship between meaningful activities and health. Most tasks, activities and occupation carry some meaning to those engaged in them, although they may be perceived as meaningless or negative. This research focuses on activities perceived as positive, enjoyable, important or valued.
Understanding the characteristics of occupation that impact health will have benefits for everyone. Dr. Backman describes meaningful activities as “goal-oriented pursuits that people need or want to do in order to live productive and satisfying lives.” “Valued Life Activities,” “occupations,” and “personal projects” are other terms sometimes used to express this concept. Some examples are leisure activities, like gardening, and productive occupations, such as volunteering, parenting or employment. Dr. Backman maintains, “Meaningful activity is an untapped strategy to promote health and well-being; in the presence of arthritis and other chronic illness it may be as important as other healthy lifestyle habits.” She emphasizes that understanding the characteristics of occupation that impact health will have benefits for everyone, regardless of ability.
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Dr. Backman draws on a population health perspective that considers the physical, mental, emotional and social dimensions of life96: Health has to do with the bodily, mental, and social quality of life of people as determined in particular by psychological, societal, cultural, and policy dimensions. This definition of health (like the WHO definition of disability) takes into consideration the social, economic and environmental determinants of health. Research like Dr. Backman’s shifts the focus from cure (sometime in the future) to living well (living with disability in the present). Many people believe the expression “disability health” to be something of an oxymoron! This stems from an understanding of health as the absence of disease or impairment.98 However, there are healthy disabled persons—individuals whose conditions are relatively stable and who require roughly the same amount of medical attention as other healthy people.99 The following is a somewhat cheeky way to illustrate the difference between the traditional and population health approaches to health.
The Traditional 10 Tips for Better Health 1. 2. 3. 4.
Don’t smoke. If you can, stop. If you can’t, cut down. Follow a balanced diet with plenty of fruit and vegetables. Keep physically active. Manage stress by, for example, talking things through and making time to relax. 5. If you drink alcohol, do so in moderation. 6. Cover up in the sun, and protect children from sunburn. 7. Practice safer sex. 8. Take up cancer-screening opportunities. 9. Be safe on the roads: follow the Highway Code. 10. Learn the First Aid ABCs: airways, breathing, circulation.
The Social Determinants 10 Tips for Better Health 1. 2. 3. 4. 5. 6. 7. 8.
Don’t be poor. If you can, stop. If you can’t, try not to be poor for long. Don’t have poor parents. Own a car. Don’t work in a stressful, low-paid manual job. Don’t live in damp, low-quality housing. Be able to afford to go on a foreign holiday and sunbathe. Practice not losing your job and don’t become unemployed. Take up all benefits you are entitled to, if you are unemployed, retired or sick or disabled. 9. Don’t live next to a busy major road or near a polluting factory. 10. Learn how to fill in the complex housing benefit/disability application forms before you become homeless or disabled.
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A Collaborative Approach to Ensuring the Health and Safety of Persons with Disabilities when Interacting with Law Enforcement Officers Principle investigator Dr. Silvia Ursula Raschke (British Columbia Institute of Technology, CREATE), the Neil Squire Foundation, Axel Hovbrender (Justice Institute of British Columbia, Police Academy) and Rick Parent, (SFU), are in the early stages of a collaborative study to identify key issues around interactions between police and people with disabilities. Dr. Raschke established the Centre for Rehabilitation Engineering and Technology that Enables (CREATE) funded by a Canadian Foundation for Innovation Grant. The focus of CREATE is “CREATE-ing Healthy, Safe and Sustainable Communities”—communities that are designed to support the wellbeing and improve the quality of life of people of all ages and abilities. Dr. Silvia Ursula Raschke asserts, “Healthy and safe communities require a strong network of health care providers, first responders and occupational health and safety professionals working together in a co-ordinated and focused manner, at the community level and at the educational and research levels.”
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This investigation, funded by a DHRN Collaborative Research Exchange grant, is one such CREATE project. While persons with disability are at a high risk of becoming victims of crime, police officers can easily confuse certain communication, mobility or movement difficulties with drug or alcohol abuse. Police officers are required to make snap judgments regarding the danger of an individual to himself or others. Meanwhile, a person with disability may not be dangerous and may or may not need assistance. The goals of this study are to clearly identify the issues from both disability and police perspectives. Results will be used to improve communication, develop curriculum and promote strategies that can help ensure that persons with disabilities are treated fairly and appropriately within the justice system.
A significant aspect of Dr. Raschke’s work is her emphasis on applied research. For Dr. Raschke this is pragmatic research that listens to the end users and where the “proof is in the pudding.” “Advancing the State of Practice” is a key part of BCIT’s educational and research vision. To the left is a picture of one CREATE simulation lab—the Dr. Tong Louie Living Laboratory. This is a place where researchers can simulate ‘real life’ situations, allow people to observe and then to learn from the events that occurred.
Some people find the police ‘scary’ but similarly some police officers feel uncomfortable with disability. We need to promote understanding from both sides. –Dr. Silvia Ursula
Applied research is research that seeks to solve practical problems, to find solutions to everyday problems, and to develop innovative technological solutions (Van Wagner, 2010).
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Fair Competition for Paralympic Athletes with Spinal Cord Injury (SCI) Dr. Patricia Mills, a Physical Medicine and Rehabilitation resident, has completed a Master’s degree in Health Care and Epidemiology. Her area of specialization is PHYSIATRY or physical medicine. She is supervised by ICORD researcher Dr. Andrei Krassioukov, Associate Professor, Department of Medicine, UBC and VCH. Dr. Mills has been conducting a meta-analysis of cardiovascular outcomes after spinal cord injury, looking for evidence-based effects of level of injury and severity of injury on cardiovascular parameters. Dr. Mills is also working on a clinical research project evaluating the extent of cardiovascular dysfunction due to an impaired autonomic system affected by the level and severity of spinal cord injury in wheelchair athletes.
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Dr. Mills and Dr. Krassioukov are part of a team of researchers that has received permission to enter the Olympic Village during the 2010 Paralympic games. Their concern is that the current method used by the International Paralympic Committee to classify athletes with Spinal Cord Injury may create an uneven playing field. Their goal is to develop a data base to determine what evidence-based changes should be made to the current classification in order to ensure fair competition for Paralympic athletes. The team has already begun their research at the 2010 World Wheelchair Rugby Championships.
Dr. Mills draws from an approach to medicine that integrates research, practice and patient viewpoints called Evidence-based medicine. Evidence-based medicine is the conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patients. The practice of evidence-based medicine requires the integration of individual clinical expertise with the best available external clinical evidence from systematic research and our patient’s unique values and circumstances (University Of Toronto Libraries).
The Paralympics embodies the same spirit of healthy competition with fair play. –Dr. Patricia Mills
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In Conclusion This book began with the statement that it will have done its job if it prompts you to think differently about disability. “Disability” is many things; it has many faces. It is being “marked” or “other-ed.” It is being defined by what you are NOT. It is social “dis-ease,” a label, a restriction in activity, or being thought unable to work. Disability is good business and a protected ground in the Canadian Charter of Rights and Freedoms. Disability is a culture and identity to be proud of. Disability is part of being human.
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Disability Health Research also has many faces. It has a not-so-happy history. It is understood by means of various approaches, most prominently, the medical and social models. Disability research raises serious ethical questions and these issues are addressed in diverse ways by differing disciplines. Disability research is taken up by artists, social workers, nurses, occupational therapists, engineers and medical doctors as well as others not included here such as: teachers, counselors, psychologists, physical therapists, speech therapists, or lawyers.
However, our differences are necessary! This is the message of disability: Diversity is indispensable. We need each other. Moreover, the scope of our project is so broad that it demands attention from all angles. Not one of us could tackle it alone. That is the value of an interdisciplinary research network. Our differences can divide us. However, they also offer up synergistic potential to help us better understand the human condition, and to sharpen us so that our research can truly make a difference in the lives of persons with disability, that is, in all of our lives and the lives of those we care about.
This is the message of disability: Diversity is indispensable. We need each other.
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LEARN MO RE
For Further Reading
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Disabled Persons Movement Canada:
Disability Rights in Canada: Retrieved January 30, 2010/ freeculture.ca/
A Virtual Museum. http://disabilityrights.
United Kingdom
The Disability Archive, retrieved January 30, 2010 from http://www.leeds.ac.uk/disability-studies/archiveuk/ index.html United States
University of California, Berkley. (2004). The Disability and Independent Living Movement, Retrieved September 16, 2006, from http://bancroft.berkeley. edu/collections/drilm/index.html
Disability Studies Albrecht, G.L. (2002). American pragmatism, sociology and the development of disability studies. In C. Barnes, M. Oliver, & L. Barton (Eds.), Disability studies today (pp. 18- 37). Cambridge: Polity Press. Centre for Disability Studies, Leeds University. Retrieved January 30, 2010 from http://www.leeds. ac.uk/disability-studies/ Linton, S. (1998). Disability studies/not disability studies. Disability and Society, 13(4), 525-540.
Emancipatory Research Mercer, G. (2002). Emancipatory disability research, In C. Barnes, M. Oliver, & L. Barton (Eds.), Disability studies today (pp. 228-249). Cambridge: Polity Press.
Ethics and Disability Koch, T. (2005). The ideology of normalcy: the ethics of difference. Journal of Disability Policy Studies, 6(2), 123. Singer, P. (2005). Ethics and disability: A response to Koch. Journal of Disability Policy Studies, 16(2), 130134.
Eugenics Armer, W. J. (2005). In the Shadow of Genetics: An analysis of eugenic influences on twentieth century social policy for disabled people in European and North American societies. Doctoral Thesis, University
of Leeds. Available at Centre for Disability Studies, The Disability Archive UK, http://www.leeds.ac.uk/ disability-studies/archiveuk/archframe.htm Carey, A.C. (2003). Beyond the medical model: a reconsideration of ‘feeblemindedness’, citizenship and eugenic restrictions. Disability & Society, 18(4), 411430. Snyder, S.L., and Mitchell, D.T. (2006). Cultural Locations of Disability. Chicago: University of Chicago Press.
Evidence Based Medicine Evidence Based Practice Centre, McMaster University. Retrieved January 30, 2010 from http://hiru.mcmaster. ca/epc/
Independent Living Movement Brisenden, S. (1998). Independent Living and the Medical Model of Disability. In T. Shakespeare (Ed.), The disability reader (pp. 20-27). London: Cassel. Originally published in 1986. De Jong, G. (1979). Independent Living: from social movement to analytic paradigm. Archives of Physical Medicine and Rehabilitation, 60, 435-446. Independent Living Institute http://www.independentliving.org/ Independent Living Research Utilization (ILRU), Retrieved September 20, 2006, from http://www.ilru. org/
Insider Research Darra, S. (2008). Emotion work and the ethics of novice insider research. Journal of Research in Nursing, 13(3), 251-261. Eikeland, O. (2006). Condescending ethics and action research: Extended review article. Action Research, 4(1), 37-47. Institute of Applied Social Research (IASREC). 2009. Insider Research! Retrieved January 22, 2010 from http://www.beds.ac.uk/research/iasr/ethics/ insiderredearch/Insider_Research_Guidance_IASREC_ Oct_09.pdf Mercer, J. (2007). The challenges of insider research in educational institutions: wielding a double-edged sword and resolving delicate dilemmas. Oxford Review of Education, 33 (1), pp. 1-17.
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Intersection/interlocking of disability with other “axes” of oppression Asch, A. (2004). Critical race theory, feminism and disability: Reflections on social justice and personal identity. In B. Smith & B. Hutchison (Eds.), Gendering disability (pp.9-14). New Jersey Rutgers: University Press. Bell, C. (2006). Introducing white disability studies: A modest proposal. In Lennard J. Davis (Ed.), The Disability Studies Reader (pp.275-282). New York: Routledge. Clare, Eli. (2002). http://eliclare.com/ Garland-Thomson, R. (2001). Re-shaping, re-thinking, re-defining: feminist disability studies, Center for Women Policy Studies. Retrieved January 30, 2010, from http://www.accessmylibrary.com/article1G1-84377500/re-shaping-re-thinking.html McRuer, R. (2006). Compulsory able-bodiedness and queer/disabled existence. In Lennard J. Davis (Ed.), The Disability Studies Reader (pp.301-308). New York: Taylor and Francis Group. Vernon, A., & Swain, J. (2002). Theorizing divisions and hierarchies: towards a commonality or diversity? In C. Barnes, M. Oliver, & L. Barton (Eds.), Disability studies today (pp. 77-97). Cambridge: Polity Press.
Occupational Science Backman, C. (2009). Chapter Nine: Occupational Balance and Well-being. In C. H. Christiansen, E. A. Townsend (Eds.), Introduction to Occupation: The Art and Science of Living, NewJersey: Pearson. Backman, C., Del Fabro Smith, L., Smith, S., Montin, P. and Suto, M. (2007). Experiences of mothers living with inflammatory arthritis. Arthritis & Rheumatism (Arthritis Care & Research), 57(3), 381–388. Backman, C. (2004). Occupational balance: Exploring the relationships among daily occupations and their influence on well-being. Canadian Journal of Occupational Therapy, 71(4), 202-209. Backman, C., Kennedy, S., Chalmers, A., and Singer, J. (2004). Participation in paid and unpaid work by adults with Rheumatoid Arthritis. The Journal of RheumatologyI, 31(1), 47-57.
Pragmatist Paradigm Morgan, D. (2007). Paradigms lost, pragmatism regained. Journal of Mixed Methods Research, 1(1), 48-76. -68-
Reason, P. Pragmatist Philosophy and Action Research: Readings and conversation with Richard Rorty. Retrieved January 30, 2010 from http://people.bath. ac.uk/mnspwr/Papers/Rorty.pdf
Social Model of Disability Finkelstein, V. (2001b). The Social Model of Disability Repossessed. Available at Centre for Disability Studies, The Disability Archive UK, http://www.leeds.ac.uk/ disability-studies/archiveuk/archframe.htm Humphrey, J. C. (2000). Researching disability politics, or, some problems with the social model in practice. Disability and Society, 15(1), 63-85. Oliver, M. (1990). The politics of disablement. Basingstoke: Macmillan. Available at Centre for Disability Studies, The Disability Archive UK, http:// www.leeds.ac.uk/disability-studies/archiveuk/ archframe.htm Thomas, C., & Corker, M. (2002). A journey around the social model. In M. Corker & T. Shakespeare (Eds.), Disability/Postmodernity (pp.18-31). London: Continuum. Shakespeare, T. (2006). The Social Model of Disability. In Lennard J. Davis (Ed.), The Disability Studies Reader (pp.195-204). New York: Taylor and Francis Group.
E N D N OT E S
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This book will use the terms “person with disability” and “disabled person” interchangeably. British scholars prefer to use the term “disabled person” since it carries with it the idea that individuals are disabled by society (Morris, 2001). On the other hand, North Americans employ “persons with disability” in order to place the emphasis on personhood rather than disability (The Roeher Institute, 1996). 1
Goffman, forwards the theory of stigmatization: a universal, interactive social practice whereby societies establish boundaries to differentiate between “normal” (acceptable) and “abnormal” (unacceptable) human traits. Traits that are not considered to be “normal” within that society are seen not only as different, but as deviant, and are, therefore, “marked” or stigmatized (Garland-Thomson, 1997). Stigmata, according to Goffman, are socially constructed from three factors: physical abnormalities (such as deformity or impairment); behavioural abnormalities (such as addiction, dishonesty, or poor manners); and cultural abnormalities (such as race, religion, ethnicity or gender) (Garland-Thomson, 1997). Disability, then, like “race”, “sex”, etc., is marked as “other”, stigmatized and “deviance” is exacerbated by negative social reactions and pejorative labels (Hughes, 2002). As GarlandThomson (1997) asserts, “…the problems we confront are not disability, ethnicity, race, class, homosexuality, or gender; they are instead the inequalities, negative attitudes, misrepresentation, and institutional practices that result from the process of stigmatization” (p.32). 2
(Morris, 2004, p.21)
9
(Source: Tampa Mayor’s Alliance for Persons with Disabilities, 1999)
10
See Tampa Bay Mayors list for more famous people with disability as well as current famous people with disability
11
Sources: Health and Welfare (United Kingdom http://www.hw.ac.uk/welfare/disability-service/ staff/disability-etiquette.htm; Disapedia.com; www. wheelchairnet.org; and United Spinal Association www.unitedspinal.org/pdf/DisabilityEtiquette.pdf
12
See for example, Laforge, J. (1991), Pardeck (2001)
13
See for example, Jernigan, K. (2009) The pitfalls of political correctness: Euphemisms excoriated; Tennant, S. (2008). Person-first language and autism: Neurodiversity and the prejudice of politically correct terminology; Vaughan, E.C. (2009). People-First Language: An Unholy Crusade.
14
The author has deliberately employed the term “disabled persons.” This is the preferred language of disability scholars in the United Kingdom since it underlines the idea that people are disabled by society. (See for example, Oliver, 1990) 15
Laforge (1991) makes this point in passing. See also Titchkosky (2001), Overboe (2007).
16
(Hughes, B. 2009b, p.682)
17
(Priestly, 1998); http://www.cwrl.utexas.edu/~ulrich/ rww03/othering.htm 3
Adapted from Tanya Titchkosky (2002) who observes, “So common is it to map disability through a series of negations that it might be easy to miss the strangeness of such a process. This strangeness is revealed when we try to map others in a similar fashion, for example, a man is a person lacking a vagina. It would seem ridiculous today to conceive of gender in terms of negation. However, it is still common to regard the disabled body as a life constituted out of the negation of able-bodiness and thus, as nothing in and of itself.” (p.103) 4
The British social model distinguishes between impairment and disability. Impairment refers to the biomedical condition of the person; while disability is considered the social discrimination faced by disabled persons by a society that marginalizes and excludes them. (UPIAS, 1975; Oliver, 1990; Morris, 2004) 5
(Garland-Thompson, 1997, p.34)
6
(Hughes, 2000; 2002a)
7
(Scully, 2002)
8
Bill Hughes (2007, p. 682) explains, “Ironically, the ontological insecurity of non-disabled identity is the original sin that pushes disabled people to the margins of the human community. Disability is not an infraction of social norms about ‘normalcy’ but a product of the failure of carnal normalcy to take proper account of itself, to indulge in ‘bad faith’ and delude itself into thinking that it is exempt from the slings and arrows of outrageous fortune. The problem rests with the normative body that does not want to be reminded of its own vulnerability or to admit that abjection and death is its fate. In this context the disabled body is troublesome because it ‘exposes the illusion of autonomy, self-government and selfdetermination that underpins the fantasy of absolute able bodiedness’” (Thomson, 1997, p. 45). See also Hughes (2009a) and Wendell (1996).
18
This is a point Chris Townsend’s 1998 Photo Exhibition, The Ugly Show/Vile Bodies, Vile Bodies: Photography and the Crisis of Looking, graphically illustrates. His goal is to challenge “the existing regime of body fascism, the imposition of set notions of beauty and ugliness.” See Richard Jevons’ (1999) Exhibition Review. 19
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Compiled from: Health and Welfare (United Kingdom http://www.hw.ac.uk/welfare/disability-service/ staff/disability-etiquette.htm; Disapedia.com; www. wheelchairnet.org; and United Spinal Association www.unitedspinal.org/pdf/DisabilityEtiquette.pdf. See the United Spinal Association’s booklet “Disability Etiquette” for an extended discussion.
20
(Zola, 1991, p.10)
21
value” (Pedlar & Hutchison, 2000, p.638). Pedlar and Hutchison (2000) go on to illustrate the current commodification of disability within human services in Canada. They forward that, “In organizations where competition for people and commodification take hold, the dominant organizational goal is to protect and even enhance the profit margin—simply put, profit over people” (p. 650). (Department of Justice, 1982)
36
(Human Resources Development Canada, November 2000)
22
(Zola, 1989) Deborah Stone, an American political scientist in the 1980’s, proposes that the concept of “disability” emerged as an administrative category in Western societies in order to control the allocation of resources according to work-based or needs-based commodity distribution (Oliver, 1990; Erevelles, 1996; Barnes, 1998; Priestly, 1998).
23
These are the most recent Canadian statistics available.
24
(PALS, 2001)
25
http://www.eia.gov.bc.ca/pwd/eapwd.htm
26
(Jongbloed, 2003)
27
This is the basis of the economic model of disability. This model associates impairment with the individual’s inability to participate in the paid labour force—in other words, “disability” is equated with “unemployability”. Lynn Jongbloed (2003) clarifies, “It assumes that an individual’s ability to work is determined primarily by his or her functional capacities, and there is little focus on altering job expectations to accommodate the individual. People with disabilities are seen either as past contributors to the economic system and thus deserving of assistance or as outside the economic system and so meriting only charity” (p. 205). 28
(Service Canada, 2008)
29
(Drake et al, 1996)
30
(Sun Trust Bank)
31
Ministry of Employment and Income Assistance, BC
32
(Putnam, 2005)
38
(cited in Swain & French, 2000, p.580)
39
(Hahn 2000; Swain & French, 2000)
40
(WHO, 2009)
41
(Bickenbach et al., 1999; Üstün et al., 2003)
42
(Bickenbach et al., 1999, p. 1184)
43
Adapted from (Wilson and Beresford, 2002, p. 144) Anne Wilson and Peter Beresford (2002), both “survivors” of the psychiatric system, apply a universal perspective to the experience of distress: “In pointing to the socially constructed nature of ‘mental illness’, we do not wish to deny or play down the very real mental and emotional distress that we and other psychiatric system survivors experience. We nevertheless view this as part of a broader continuum of distress and well-being: a continuum upon which all people would place themselves, in different positions and at different times in their lives. We need to be explicit: the world does not consist of ‘normals’ and ‘the mentally ill’; it consists of people, all of whom experience mental and emotional distress at some time(s) in their lives.”
44
(Garland-Thomson, 2004, p. 92)
45
(Morris, 1993, p. 68)
46
(Zola, 1995, p.18)
47
(Carlson, 2001, 142; Lee, 2002, p.140)
48
(Hughes, 2009b)
49
33
(Report of the Royal Commission 1927, CC21; cited in Park & Radford, 1999, p.93)
(Human Resources and Skills Development Canada, 2005)
51
(Albrecht, 2002)
34
35 (Albrecht, 2002, p. 32) The commodification of disability is defined as occurring “…when first, monetary value is placed on meeting needs that arise from a disability and, secondly, services for individuals with a disability are directed, not toward meeting those needs, but rather toward realizing that monetary
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(Hahn, 2000; Putnam, 2005)
37
50
(Bicknell 1896: 52; cited in Park & Radford, 1999, p.93) (p.19, 42; cited in Park & Radford, 1998, p.319)
52
Rauchman (1991) writes, “The great complex idea of ‘normality’ has become the means through which to identify subjects and make them identify themselves in ways that make them governable” (p.104; cited in Tremain, 2002, p.37)
53
(UPIAS, 1976, 4-5; cited in Barnes, 1998, p.68)
54
(Barnes, 1998; Priestley, 1998)
55
(Hughes, 2002, p.60)
56
(HRSDC, 2004)
57
(Hughes, 2002)
58
(Thomas, 2002, p.40)
59
(HRSDC, 2004; Thomas, 2002, 40)
60
(Hughes, 2000)
61
(Bickenbach et al, 1999)
62
The British Social Model differentiates disability (social discrimination) and impairment (the medical condition) (Thomas, 2007; Shakespeare, 1996, 2006) in the same way that anthropologists proposed a culture/ race distinction (Turner, 2007) and feminists a gender/ sex division (Davis, 2007; Witz, 2000). While these social/biology, culture/nature based dichotomies had practical and political value for furthering the rights of minority groups, the distinctions drawn began to be criticized for relying on a modern, essentialist and dualistic approach; for leaving the nature/biology side of the dualism untheorized; and for defining collective identity so narrowly that it neglected and excluded difference within the group (Thomas, 2007; Davis, 2007; Bell, 2006; Davis, 2006; Tremain, 2006; Price and Shildrick, 2002; Corker, 1999).
63
(Jung, 2002)
64
The American version of the social model, the minority group model, focuses on human rights. Hahn (2002) argues that the social inequalities experienced by all minority groups are basically the same: high unemployment, poverty, welfare dependency, segregated schooling, inadequate housing and transportation, and social exclusion.
65
(Morris, 2004, p. 21)
66
(Morris, 2005)
67
(Crow 1996, p. 1)
68
(Kitchin, 2002)
69
(Singer, 2005)
72
(McBryde Johnson, 2003)
73
(Porter, 1986, p. 18; cited in Davis, 2006)
74
(Davis, 2006)
75
(Porter, 1986, p. 104; cited in Davis, 2006)
76
(French and Swain, 2008)
77
(WikiAnswers)
78
(Davis, 2006, p. 6)
79
(Wilson, 2007, p. 73)
80
(Asad, 1994, p. 78; cited in Lather, 2006, p. 49)
81
(Smith, 1999; cited in Lather, 2006)
82
(Lather, 2006, p. 49)
83
(Oliver, 1990, p. 33)
84
(Bury, 2000)
85
(Bickenbach, 1999, 1177)
86
(Lee, 2002, p. 149)
87
(Snyder and Mitchell, 2006; Titchkosky, 2007; French and Swain, 2008)
88
(Ministry of Human Resources, 2002; Ministry of Housing and Social Development, 2008)
89
(Hunt, 1998)
90
(Oliver, 1992)
91
(Hughes, 2009b)
92
(De Jong, 1979)
93
(Finkelstein, 2001; Humphrey, 2000; Mercer, 2002; Morris, 2005; Oliver, 1990) Simon Brisendon (1998, p. 21) and Mike Oliver (1990, p. 26) explain: “This involves treating the experiences and opinions of people with disabilities as valid and important; more than this they must be nurtured and given an overriding significance, in order that they begin to outweigh the detached observations of the medical ‘expert’. Our experiences must be experienced in our words.” “Much of the work which has been done… has been carried out by people who do not themselves experience the daily problems of disability. This has directly affected the solutions, and in turn has often served to perpetuate discrimination against us.”
94
(Zola, 1989)
70
(Snyder and Mitchell, 2006)
71
-73-
Baumbusch, J. (2009). Planning for Two Lifetimes: Health Work in Families of Young Children with Special Needs. Final Report. For more information contact Jenifer Baumbusch, RN, PhD Jennifer.baumbusch@nursing.ubc.ca
95
(Frankish et al, 1996)
96
Social Determinants of Health, Wikipedia
97
(Rimer, 1999)
98
(Nosek & Hughes, 2003).
99
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