In my last post I wrote about being harassed by inner city youth. Such harassment is not restricted to the young. I suspect the young men that harassed me saw an easy mark. This makes them like most people who see disability as a problem. For most typical others, all they see is a wheelchair. I am wheelchair man and thanks to the new blue wheelchair logo I am wheelchair action man. However the new logo has not changed the assumption that life using a wheelchair is inherently less and sub-standard. I am now and forever in dire need of help. The fact I do not need help doing the ordinary never crosses people's minds. Like it or not, social boundaries are absent and I am routinely disrespected.
In the land of disability, prejudice, stigma, and ignorance play out in a myriad of ways. Yesterday, I had a somewhat bizarre encounter. Last week a dear and deeply valued friend hurt her back. After a sleepless night she went to the hospital. Hospitalized for less than a week she was transferred to a local short term rehabilitation hospital. I have visited almost daily and have provided many meals. This is what you do for good friends as the food served at the facility is inedible. Yesterday I visited in the late afternoon. After a short visit I left and that's when things got strange. I left the facility and due to a lack of curb cuts was in the street going uphill to my car. I transferred into my car when I was suddenly accosted by two official looking men. The following exchange took place:
Men: "Sir, where are you going? You can't leave the facility"
Me: I have a puzzled look on my face
Men: "Sir, are you a patient?"
Me: "No".
Men: "We lose people here. The patients get out and wander away. We are worried about your safety. Can I see your license and registration? Can you prove you are not a patient?"
Me: "I am not a patient. You are not the police and have no right to ask for my license or registration".
Men: "So, who are you? How do I know you are not a patient?"
Me: "I am leaving. Have a good night".
The look on my face was clear. The interrogation was over. The ignorance displayed here boggles the mind. Of course, every person who uses a wheelchair is a patient. People who use a wheelchair are not independent. The ordinary is impossible. Obviously wheelchair users do not visit patients--they are the patient. I am still shaking my head in wonder. How many patients use a fire engine red manual wheelchair? How many patients will break down a manual wheelchair and put it in the back of an Audi? The answer is none. Yet, I was in essence wheelchair man. All wheelchair men are the same. All wheelchairs are the same. In the facility I visited every wheelchair is cheap, black, and wide enough to fit an extremely wide person. If these wheelchairs went outside they would fall apart in short order. My wheelchair is custom made and has a rigid frame. The difference between the facility wheelchairs and mine is vast. The difference is stark--as in a Ferrari versus an old Ford. I wish I could say I am surprised but I am not. This is not the first time I have been asked if I am the patient. The assumption made is basic--I am not an independent or contributing member of society. This is the personification of the medical model of disability. This is as distressing as it is disappointing. What the hell are health care workers being taught?
As a deaf woman who worked as a dental care administratoe > 30 years, we as a whole, are pecerived from a generalized template by service providers. They do not develop relationships with us outside of financial transactions or HIPA record keeping. They assume much about the majority based on their limited and content specific interactions. They choose not to socialize, fraternize, date, nor be intimate based on their limited experiences. You are correct in your feelings and I applaud your to the manor born response. It resonates and is much more rentative than being a gracious educator or flipping out wheelie. With teens, I always ask how their moms are doing
ReplyDeleteI am delighted by our response. I have the utmost respect for Deaf culture. I would love to form a better advocacy relationship with Deaf people. The bias we face is different but shares the same root. Long ago when I was in rehab staff and patients got very close. Marriages were not our of the norm. That closeness no longer exists.
ReplyDeleteI often have that feeling as I leave the hospital when visiting someone - as if people are looking at me wondering if I'm escaping - but have never been directly accosted! How infuriating.
ReplyDeleteWhile I can understand an expectation of friendliness, why would you expect fraternizing, dating, intimacy, let alone marriage from someone who is in fact doing a job? I know William has written at more length about greater intimacy in the past between staff and patients. I see no need to look back and assume anything nefarious about those relationships. But it's unrealistic to expect that today. If not unethical, it's too dangerous from a legal point of view to develop intimate relationships with clients. Just as people with disabilities are entitled to boundaries, aren't service providers?
ReplyDeleteBen, When I wrote about the post is very much in the past. The relationship between patient and health care workers is radically different. It would be unethical in the extreme to enter into an intimate relationship. I sincerely doubt this could or would happen given the short term nature of patient health care worker interaction. A hospitalist for instance sees patients for at most four days in a row before being replaced by another physician. The sort of continuity of care I had simply does not exist.
ReplyDeleteMy expectations of health care workers is modest. Do not be rude, impose religious views on me, or act in an unprofessional manner. The health care worker patient relationship is a well bounded process and strict guidelines must be followed at all times. That goes both ways I should add. Despite this, I continue to have negative experiences as health care workers are simply not educated about disability. The lack of knowledge to often leads to inappropriate comments by health care workers. Some of this is related to the inherent power dynamics as well as wrong things people absorb about disability. For instance, when I accompany a person who uses a wheelchair health care workers joke that we should not race in the hallway. This was not funny but simply rude.
I started my career working as a speech-language pathologist in nursing homes and rehabilitation facilities. At the end of my first day, I was wheeling myself out the heavy glass doors when a member of the staff dragged my wheelchair back inside. At least twice a week for the next 9 years, someone thought I was a new resident, or a resident trying to escape.
ReplyDeleteI never saw a resident in a light weight sporty chair, wearing a name badge and lipstick. I never saw a resident carrying a stethoscope or clipboard. I never saw a resident under the age of 50. But some people only saw wheelchair, they missed young, attractive, professional woman who drove a shiny red Volkswagen.
Denise, So sad all people see is a wheelchair and leap to ignorant conclusions. I visited my friend yesterday. I was again accounted about being a resident as I we t to my car.
ReplyDeleteThanks William for elaborating.
ReplyDeleteAs a disabled medical student and resident, I would often leave my cane outside patient rooms to minimize infection spread. It's porous handle was hard to clean. More than once I returned to find it put into a patient room because, of course, a cane had to belong to a patient.
ReplyDeleteAttaching a stuffed toy animal to it helped, some.
One time a nurse saw me in my white coat, looked at my cane, and said "are you a patient or a medical student?"
All I could answer was "yes."
The best, though, was when I went to a disability advocacy day at the state house and was asked to sign in under either the "self-advocate" or "professional column. I tried to check both and was told it would throw off their count. So I wrote in "1/2" in each column. They glared at me, but hey, I didn't throw off their count.
Hi Will, are you alright, havent seen you post in abit, take care
ReplyDeleteI've been wondering the same thing JJ. Hope all is well.
ReplyDelete