Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the thirty-eighth question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:
How would you like to see the medical community change in the future?
Because I have lived with disability all my life, I have been engaged in the medical community as a patient or recipient of care for as long as I can remember. One of my earliest memories is from the time I spent in the hospital when I was three years old. I have also been a professional in the medical community as a speech-language pathologist (SLP). I have helped train medical professionals in my role as SLP and as a patient advocate and community volunteer. I have served as a presenter at local colleges, speaking to physical and occupational therapy students about my personal experiences. I was part of the cultural competency training team at a prior job, conducting trainings to public health professionals and medical providers throughout my state (New York).
I understand the culture of western medicine. I can easily navigate hospitals, doctor visits, rehabilitation facilities, and other medical situations because I have experience in many settings. I have worked with, and been a patient of, several talented, kind and knowledgeable professionals. I am grateful for their expertise and dedication to my well-being.
But, in general, there is a negative perception of disability in western medicine and in our society. It is due to our cultural recognition of disability as a Bad Thing – “capital B, capital T” as the brilliant, late Stella Young described it. Rather than being perceived as something which just happens in the natural course of life, disability is often seen as a fate worse than death. And many people, medical professionals included, equate disability with poor quality of life.
I have heard each of these sentences repeatedly over time:
I’d rather die than have to live like you – dependent on other people for everything.
If I had to use a wheelchair all the time, I’d kill myself.
I’d abort my fetus if I learned it had a disability.
If I have to live like that, just pull the plug and let me go.
The people who say these things may not equate disability with diminished quality of life. Most likely, they fear a loss of independence and the need to depend on another for basic survival. Yet, I suspect many of them would not describe my quality of life as “poor” even though I use a wheelchair and rely on Personal Assistants to meet my needs.
I am used to having conversations about disability and quality of life. I have written before about how my life does not accurately reflect the reality of life for the majority of people with disabilities here in the United States – here, here and here in case you missed those posts. If you like pictures and graphic representation of data, you can look at this infographic about disability produced by the United States Centers for Disease Control and Prevention.
I volunteer to speak to students, particularly medical students, because I want them to stop looking at me (and other future patients who happen to have disabilities) with pity. I want them to stop calling me “the wheelchair” when they describe me in the waiting room, and start using my name. I want them to hear the language which has been used to describe me (“wheelchair bound,” “deformed,” “suffering”) and recognize how difficult it is for a young person to develop a healthy self-image when all she hears from medical professionals is what is “wrong” with her instead of good things. If I ever end up in a hospital again, in a coma and unable to communicate, I want medical staff to listen to my family and friends when they advocate for my care as I have instructed them. I want the doctors responsible for my care not to be surprised when my sister tells them I have a masters degree and a license in speech-language pathology, work full time, manage my home care staff and 49 hours of care per week, travel, write and volunteer for community organizations.
People with disabilities need to tell their own stories in their own words and voices so the public hears and reads authentic disability stories, not the disability stories told by the non-disabled. This is particularly crucial because too many disability stories told by the non-disabled are based on the perception of disability as a deficit. My neurologist may be able to explain the biology of my neurological disease to his medical students, but he cannot tell them the story of my life as I can. He can describe the functional limitations caused by deteriorating muscles, but he cannot describe my experiences living day-to-day with changing abilities.
More than anything, I want to be treated as a complete person, worthy of quality care and respect from my providers. I want to tell my own story. Just like everyone else.