Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the second question in the Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later.
Question: If you have a medical diagnosis, do you see yourself as having a disability? Why or why not? If you don’t have one, how do you view the concept of disability or the people in your life who have them?
There are many ways to view disability. The concept of disability is really a social construct, which means the definition is influenced by cultural preconceptions. I live in a culture which for years has viewed disability through a medical model. The medical model of disability views disability as a health condition (usually a deficit or abnormality) which is dealt with by medical professionals. The “problem” of disability is one to be “fixed” or “cured.” A person is often described in terms of what they cannot do. I have read this, or something similar to this, in my medical records: This 41 year old wheelchair bound woman is unable to independently perform activities of daily living, and relies on assistance from others to function. She is unable to weight bear without assistance but can perform a stand pivot transfer with min-mod assist. She relies on bi-pap to maintain respiratory function during sleep.
Did you notice all of those problems or things I cannot do? Often, viewing disability through a medical model results in pity for the person “afflicted with” or “suffering from” an impairment. If a person is not “normal” it is assumed their quality of life must be less than those without disability. People with disabilities are encouraged to “overcome” and must adjust to “mainstream” society because the disability is the person’s problem. Disability is negative, and a person’s experience is often described using the words or phrases I have put in parentheses.
The social model of disability contrasts to this view. The social model does not deny an impairment and the impact it has on a person. But disability is viewed as the result of interactions between a person living with impairments and the barriers they encounter in the social environment. For example, my lack of ability to climb steps does not disable me. Rather, the lack of a functioning wheelchair lift and staff who give me attitude when I ask for the key for the lift prevent me from interacting on equal footing with my community. In this model, it is society which needs to change and accommodate people living with impairment instead of the individual needing to accommodate to a society which does not grant them equal access. I don’t need to be able to climb steps – the business owner who wants my money must make their business accessible to me.
The social model of disability promotes the view that people with disabilities have a right to expect full participation. This view is the basis for the United Nations Convention on the Rights of Persons with Disabilities, which has been adopted by many countries. Sadly, the United States has yet to ratify this treaty, which is inspired by United States law. I’ll save my editorial about this for another post.
You may not recognize the importance of the shift to a social model of disability, but I know many who live with disability who understand. If we are viewed with pity or as objects of charity instead of individuals with rights who are able to make decisions for our own lives, able to give informed consent and be active members of society, we will never be treated as equals. I have succeeded in my life because I was expected and encouraged to succeed. I was raised by parents who viewed me as capable and worthy of the same opportunities as my able-bodied peers. How different life would have been if my mother had not opposed the school district when they wanted to send me to a self-contained classroom for students with disabilities just because of my physical impairment. The district meant well, but had limited experience with children with my diagnosis. Consumer Directed Personal Assistance, the program I use for my home care, is based on this model where the Consumer (senior or person with a disability) is viewed as capable of self-directing their own care rather than a medical professional dictating care at home.
I cannot walk. I cannot lift heavy objects. I cannot physically get myself into a seated position when I am in bed. I cannot lift my arms up over my head when I am in my wheelchair. But I am not my disability. Most times I am not disabled.
Webster’s Dictionary defines disabled as “incapacitated; unable to work.” I am not a disabled woman. My woman-hood works just fine. I am not a disabled person. I am a sister, a friend, an aunt, a professional, a speech-language pathologist, a crocheter, a baker, a volunteer, a leader, a Rotarian and more. Thanks to technology and the Personal Assistants I employ, I live an independent, self-directed life. I am grateful to live in a country with laws such as the Americans with Disabilities Act which grant me equality and access. Without electricity, technology, physical assistance and civil rights, I would be very disabled indeed.
Yes, I have experienced moments when I feel disabled by my environment. I do occasionally describe myself as disabled when the actions or attitudes of others have prevented me from full equality. But I use person first language when describing myself and others. I am a woman who uses a wheelchair. I am a person with a disability. On the rare instances when I call myself disabled, it is because society has failed to include me or make accommodations for my needs. I no longer apologize for the accommodations I require, something I used to do. Instead, I expect they will be there and prepare in case they aren’t.