Traveling on the road of having a disability can be a twisting, menacing place that requires keeping your eyes on the road and your hands on the wheel at all the times.
In fact, how we define our situation and the words we use to do that, have a great influence on our perspective and the perspective others may have. There has been a huge push by those in the disability community to take the “dis” out of disability and focus on the "ability”. Why? Disadvantaged, disagreeable, disappointed, disapproval; ‘dis’ words have negative implications. People who have a disability must work hard to find the positive aspects of their situation. Words do make a difference.
For right now, let’s focus on how disability is defined by our community at large. Keep in mind how these definitions affect how we view ourselves and how we view others.
From the Disabled Living Foundation:
WHAT IS A DISABILITY?
There are several ways of defining disability. The two most widely used definitions are the medical model and the social model (the social model being the one most disabled people themselves, generally, prefer as this emphasizes the social restrictions that can prevent disabled people from having an equal opportunity to take part fully in all aspects of life).
The medical model:
This definition of disability was composed by the World Health Organization (WHO) in the early 1980s. This definition defines impairment, disability and handicap as follows:
IMPAIRMENT - loss or abnormality in structure or function;
DISABILITY - inability to perform an activity within the normal range for a human being, because of an impairment;
HANDICAP - inability to carry out normal social roles because of an impairment/disability.
These definitions were initially derived for the convenience of medical personnel. They reinforce the misconception that disability is allied to ill health and that disabled people need the care and attention of the medical profession. These definitions also put the responsibility for functional inability with the disabled person and imply that the answers to solving the problems that arise from living with a disability lie with the medical
The social model:
The social model looks at the way in which the lives of disabled people are affected by the barriers that society imposes. Having a disability certainly implies that there is some functional limitation that has been caused by an illness, accident or medical condition. In some situations, the limitation is accommodated, i.e. person with hearing loss may use a hearing aid to restore his/her hearing; short sightedness can be corrected by wearing glasses or contact lenses. Day-to-day activities may be more difficult for a disabled person because of pain, difficulty in moving or communicating, or because of a learning disability, but an accepting and accommodating society would significantly reduce the effects of
If the social and environmental barriers were eliminated, disabled people would have a more realistic opportunity of living equally alongside non-disabled people.
For more info: Disabled Living Foundation
From American’s with Disabilities Publications: According to the Americans with Disabilities Act (ADA):
Barriers to employment, transportation, public accommodations, public services, and telecommunications have imposed staggering economic and social costs on American society and have undermined our well-intentioned efforts to educate, rehabilitate, and employ individuals with disabilities. By breaking down these barriers, the Americans with Disabilities Act (ADA) will enable society to benefit from the skills and talents of individuals with disabilities, will allow us all to gain from their increased purchasing power and ability to use it, and will lead to fuller, more productive lives for all Americans.
The Americans with Disabilities Act gives civil rights protections to individuals with disabilities similar to those provided to individuals on the basis of race, color, sex, national origin, age, and religion. It guarantees equal opportunity for individuals with disabilities in public accommodations, employment, transportation, State and local government
services, and telecommunications.
“An individual with a disability is a person who has a physical or mental impairment that substantially limits one or more major life activities, has a record of such an impairment or is regarded as having such an impairment.”
A physical impairment is defined by ADA as "any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological, musculoskeletal, special sense organs, respiratory (including speech organs), cardiovascular, reproductive, digestive, genitourinary, hemic and lymphatic, skin, and endocrine."
Major life activities include, but are not limited to: caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working.
For more info: From ADA Publications
Americans with Disabilities Act of 1990 [ADA], including changes made by the
ADA Amendments Act of 2008 (P.L. 110-325)
My research has also shown that if you are trying to apply for some sort of benefit, whether it’s from the government, insurance company or an employer, each group has their own definitions and their own criteria. Once again, the words we use and the words others use do make a difference.
Finding your own definition is important. It determines how you define yourself and view your situation. Your outlook will have a huge influence on your ability to deal with and cope with all the challenges that come with having a disability or dealing with someone who does.
I still get teased by my wife over my choice of words several years ago. In my mind, it was easier for me to focus on my diagnosis of having a ‘synovial sarcoma’. After surgery and chemotherapy treatments, I happened to say something to her about having cancer. Her comment: "Well look who just caught up!" [said with affection of course]. She couldn’t believe that I finally admitted to having cancer. Heck, I knew it, I wasn’t in denial, I just preferred to be very specific with my words. I could fight a synovial sarcoma. Cancer was just too broad, too general for me to battle against. Hey, both ways worked; we fought the battle, each using our own word and I’m still here 14 years later!
In the end, no matter what you call it [synovial sarcoma, cancer, disabled, handicapped, crippled, etc.], we will never be able to get away from the stigma, challenges or the struggles that are at the heart of having a disability. It’s up to each one of us to reduce the effect that a disability has on our lives through our personal attitude, our actions, getting appropriate medical care when needed, taking advantage of assistive equipment and seeking support from friends & family. It’s is up to each of us to define our disability not have our disability define us.
I am disabled; I have a disability. I do everything I can to maintain my independence. I do everything I can to be a good husband, father, grandfather, son, brother, brother-in-law, uncle, friend, neighbor…
How about you?
by Steven J. Smith, M.Ed.