Changing Views on Disability
Over the last forty years, there has been an important change in the way we see persons with disabilities. Ideas about disability are changing.
The Old Way: Seeing Disability as a Problem of the Person
In the past, disability has been seen as a problem of the person who has a particular impairment or something that people regard as being wrong with them. It has been thought that the person with an impairment has to change, or be fixed in order to fit into society and access their community.
Because disability was viewed as an illness or a pathology, it became the job of the professionals to diagnose what to do about the condition in order to fix the problem. This has meant that control over the lives of persons with disabilities has often been handed over to people like doctors or others considered to be experts.
For example, sometimes doctors, rehabilitation experts and other professionals have made key decisions such as what supports a person with disabilities will receive, where they will live and whether they will get to go to school.
Sometimes if the experts could not fix the impairment, persons with disabilities have been ignored and rejected because they did not fit into their communities. This still happens in many countries and communities.
Seeing disability as a personal problem means that persons with disabilities may be:
- considered less important than persons without disabilities
- treated like helpless victims needing care and protection
- assumed not to deserve or be able to manage the same rights and responsibilities as everyone else
Seeing disability as a personal problem affects how governments and society address the discrimination that persons with disabilities face:
- it becomes the responsibility of persons with disabilities, along with their families, to find ways to get included in society
- those with medical knowledge (e.g. doctors, medical researchers and other professionals) are considered authorities on disability and are given the power to make decisions beyond medical issues
The expertise of persons with disabilities based on their own lived experiences and knowledge is not acknowledged.
A women with disability in the Philippines says that her family views her with the dignity and respect she deserves: “My disability doesn’t matter with them [my family] because I am able to perform my role as a mother and housewife. I don’t have problems with my parents, my husband and with my children. Same with my in-laws.”
On the contrary, a man in Bolivia who felt completely ostracized by his family says: “I felt that I was nothing, that I did not have any support from my family though I had support from other people that knew me and helped me. My wife has left me, I have been sad about this all this time, I am still suffering, I am incapable of doing anything at home, I am useless at home.”
Video: What’s Disability to Me? Rachael’s Story
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>> RACHAEL JOHNSON: I wanted to be a nurse since I was about six. I spent a lot of time in hospitals myself as a child and I was on dialysis for four years and then I had a lifesaving kidney transplant when I was seven.
I think the doctors and nurses when I was younger just made such a difference to me and they were like a second family to me and I wanted to make that same difference to someone else.
I think the main obstacles for me were peoples’ attitudes and peoples’ perceptions and a lot of people when I tried to get into university and when I applied for jobs, they struggled to see past the disability.
People just assumed because I had a disability that I couldn’t perform even the simplest of tasks, even as much as operating a fire extinguisher.
Getting into nursing was particularly difficult for me. I mean, I went to career advisors and they would just look at me and say why don’t you apply for a desk job and I would say well I don’t want to apply for a desk job.
Even when I did actually get into university courses, the interviewer would just look at me before I had even sat down and she would say I don’t know if this course is physically suitable for you, yet she didn’t even know anything about me.
I think the main reason I was treated differently since I set out to become a nurse was probably because people were scared because they’ve never been faced with anyone like me before. I was made to feel like a liability really because of the way I look and one of the things they made me do was carry out risk assessments which no one else had to do.
This involved just having loads of people stand around watching me whilst I completed basic nursing tasks such as holding a baby or pushing a wheelchair.
I think having a disability has actually made me a better nurse. I can fully empathize with the patients in my care because I have had similar experiences myself, so I know what they are going through.
The ward I work in now is a renal ward which is an excellent grounding for the future for me, but I know I still have a lot to learn as I’m only newly qualified.
This is disability to me. What is it to you?
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We can divide approaches that start with the idea that disability is a personal problem into two models: biomedical model and functional model.
In this model, disability is considered to be a medical or biological problem. The person with the disability is seen to have something wrong with them (e.g. a condition or impairment) that needs treatment or a cure. Here, doctors and medical researchers are considered to be the experts on disability. The focus is on eliminating disabilities through cures or treatment.
In this model, disability is still considered to be a personal issue and something that is not normal. The person with the disability is seen to be someone who is not able to function in society because they have something wrong with them that does not allow them to fit in. Here, physiotherapists, vocational trainers, social workers, rehabilitation professionals are considered to be the experts on disability and their focus is on improving the ability of the person with the disability to function in society by providing rehabilitation, physiotherapy, occupational therapy, life-skills training, counseling, special education, and special housing.
Seeing Disability as an Interaction between the Person and Society
More recently, a new way of looking at disability has developed. Instead of searching for what is wrong with the person with the disability, this approach changes the focus to what is wrong with society. Thinking this way does not deny that people have impairments but it also recognizes that persons with disabilities are people who have human rights and who are entitled to participate and be involved in their communities. Instead of trying to cure or fix individuals, this approach looks for ways that political, social, economic and physical environments and systems exclude persons with disabilities. Disability is not a problem of a particular person, but a result of the way that society and communities are set up and function. Thinking this way, including persons with disabilities in all aspects of society is a public responsibility and something that concerns all members of society.
We can divide approaches that look at disability as a social problem into two models: an environmental model and a human rights model.
In this model, disability is considered to be caused by social and physical environments that create barriers to the full inclusion of certain community members. Persons with disabilities do not have something wrong with them; they simply have a difference that society is not accommodating. Here, persons with disabilities are the experts and the focus is on eliminating systemic barriers to full inclusion by adapting physical and social environments.
Human Rights Model
In this model, disability is considered a dimension of diverse human culture. Persons with disabilities are individuals with differences who are entitled to all of the rights enjoyed by others within society. Again, persons with disabilities are the experts. Here, the focus is on recognizing that persons with disabilities have the same rights as everyone else and that human variation must be taken into account by making laws and policies that include everyone.
Model discussion based on: On Second Thought: Constructing Knowledge, Law, Disability and Inequality” (M.H. Rioux) In S. Herr, L. Gostin and H. Koh, The Human Rights of Persons with Intellectual Disabilities: Different But Equal. Oxford University Press. 287-317 (2003). Follow this link for the Article On Second Thought
Table 1. Disability as a personal problem versus a social issue
|Disability as a Personal Problem||Disability as a Result of the Way Societies
and Communities are Setup
|Can you tell me what is wrong with you?||Can you tell me what is wrong with society?|
|What condition makes it difficult for you to hold, grip, or turn things?||What problems in the design of everyday equipment like jars, bottles, and tins makes it difficult for you to hold, grip, or turn them?|
|Is it difficult for you to understand people because you are deaf?||Is it difficult for you to understand people because they are not able to communicate with you?|
|Do you have a scar, blemish, or deformity that limits your daily activities?||Do other people’s reactions to a scar, blemish, or deformity you may have limit your daily activities?|
|Did you go to a special school because of a long-term health problem or disability?||Did you go to a special school because of your government’s policy of sending people with your health problem/disability to these places?|
|Does you disability stop you from going out as often or as far as you would like?||What is it about the area where you live that makes it difficult for you to get around in your neighborhood?|
|Does your disability cause problems at work?||Do you have problems at work because of the physical environment or the attitudes of others?|
|Do you live with relatives or someone else who can help or look after you because of your disability?||Are the services in your community so poor or so limited that you need to rely on relatives or someone else to provide you with the right level of personal assistance?|
|Have you had to adapt where you live because of your poor disability?||Did that poor design of your home mean that you had to have it adapted to suit your needs?|
The table above has been adapted from Oliver, M. (1990). The Politics of Disablement. Macmillan, Basingstoke