Redefining Disability Question 2

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.

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25 thoughts on “Redefining Disability Question 2

  1. When I was reading this, I immediately thought of your stay in the hospital and being unresponsive. Even the well meaning, and trained medical staff sometimes sounded like they didn’t quite know how to react to you.Maybe it was because of a holiday weekend and a shift change @ the hospital, but this was evident in some of the responses we got.
    Finally, after sitting down with the Dr-telling him about how you function his response was “I can’t wait to meet her”.
    I think of all the people that don’t have that support and are alone without someone able to step up and advocate for them when their own voice is silent. So, thanks again for making me take the time to realize how closely we all can relate to these issues, and perhaps show a little more compassion for each other.
    Don’t know if that is where you were headed with this challenge, but thanks for the eye opener.

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  2. I have always been blessed to have so many advocates around me – people who are able to intervene on my behalf when I am unable to do so on my own, or to support me when I need more than just my voice. I think one of the reasons I advocate and am unable to stay silent is because I know there are others who aren’t as fortunate. We can all do a bit more to speak out against injustices and inequality, or to show compassion as you say. I’m glad this series is making you think about some of the issues raised!

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    • I’m honored! You are most welcome. I was just telling someone earlier today these prompts have been useful to help provide direction in writing about my experiences with disability. I often say there is so much I could write – and having specific prompts helps me keep focus. I have made a promise to myself to keep each post to less than 1000 words, and if I can do 750 that would be even better. I just couldn’t cut any more from this one though.

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  3. Thank you again for helping me reframe my own thoughts and for giving me words to help those who are ignorant through lack of education, experience or information.
    A change I have made this past year to increase awareness with our training partners is to ask the following question when choosing a site for the first time when I do a training: is the site accessible? Then I check it out prior to scheduling to make sure it really is. I have a checklist that I got from some group in Florida at the Ms Wheelchair pageant in Albany all those years ago!

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    • I am glad you are asking such an important question! When I became President of my college Alumni Association, I told each committee chair I would not approve Association funds to support any event held in a non-accessible venue. They still follow this even though I am no longer on the Board.

      Those Ms. Wheelchair chicks – always helping! 😉 Hard to believe that national pageant in Albany was 10 years ago this July!

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    • Thank you Dave! I appreciate the compliment. I never really set out to inspire anyone, but if sharing my story can help others find ways to live their lives without limits that is a blessing.

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  4. “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.”
    This is powerful and important. You shouldn’t apologize, and they absolutely should be there. I’ve started feeling the same way about respect and equality for women–I no longer apologize for things I don’t need to, I expect respect and I have prepared responses and plans of action in case that isn’t there. It’s how we get what we need and want with strength and dignity instead of self-shame or accepting less.

    Liked by 1 person

    • I think the strength and viewpoint comes with experience. Everyone should expect respect – and I am glad you are helping raise the awareness of those you encounter through your example. Thank you for sharing your insight!

      Liked by 1 person

  5. I am like you in that I’ve had countless advocates over the years who have stepped up and spoken out for me. My parents are at the top of that list. My mom did the same for me as yours did for you when it came to going to school.
    I have historically been shy and timid, but lately I have realized how lucky I am to have a voice to speak up for equality and I intend on using it because I know there are so many others who are unable to do so.
    These writing prompts have been helpful for me too.
    Great post.
    🙂

    Liked by 1 person

    • Thank you! I know my mom is just one of many amazing mothers. It is so important to be a voice for those who may not have the opportunity to speak out or those who need support advocating for themselves. Glad to have your voice with mine 🙂

      Liked by 1 person

  6. I am just learning about the social model of disability …sort of. I think I have felt and thought that society and the environment that needed to change but never could figure out how to express this. Thank you for voicing this. I have a multiple chronic medical conditions, one of which required me to have double knee replacements. You think (as well as I did) ah she is fixed or cured! No the knee replacements took away some pain but gave me new pain and I am much more restricted in my movements, walking, no running, stair climbing etc. Some may not see this a disability….I don’t until I have to climb 15 steps to get into the court house to pay my taxes and then walk three blocks back to my car where it is parked in the nearest accessible space. I have worked in the disability field for all my adult life and am horribly ashamed now at the oppression of the disabled people I thought I was working to serve. I worked in a position of authority and power in many employment settings. I did not see what I was doing because it was how I was trained. I am so happy that my eyes and mind have been opened.

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    • Thank you for your comment. As someone for whom the social model just “makes sense,” it is good for me to remember that it is new for others. I had surgery on my femur and knee in January. Even though I have lived with disability all my life, this is the first time I have ever been so restricted in how I access a bathroom. Due to my injury, I can no longer transfer on/off any toilet other than the one in my home. This significantly impacts my ability to engage in my community. As you say, I should have known how much I took for granted but of course I never stopped to consider it until I had to.

      We can all learn – and it sounds like you are open to the new lessons you are experiencing. I wish you much success.

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  7. I like the viewpoint of not being disabled but having a disability. This attitude is one that can be used by anyone as all of us encounter obstacles in our lives resulting in us feeling restricted in our desire to accomplish certain goals. Seeing our restrictions as not a part of ourselves but as an outside influence can give us the drive we need to gain victory over the circumstance. In this light, we all have disabilities and Dees has taught us that even with our disability we do not have to surrender to being disabled but can make a valuable contribution to those around us by initiating a paradigm shift in our outlook on life.

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    • I’m glad you read and commented, because it has been two years since I wrote this post and things have changed in how I describe myself. So, it was good for me to read what I had written as well.

      I DO think there are times I am disabled, and I DO use identity first language at times. When society has not made it possible for me to fully participate, I am disabled by the lack of access or planning. I say I am disabled in those instances. But, I still don’t identify as a medical diagnosis or a “restriction.” People are disabled or empowered by their surroundings and attitudes every day. I admit my need for assistance, but this is not as disabling as lack of accessible transportation.

      You are correct – everyone has something to offer to someone else. Everyone can be of service. Keep setting goals!

      Liked by 1 person

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