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Sunday, May 26, 2013

I Struck a Chord: Inaccessible Doctor Offices Part II

Wow, my last post really struck a chord. I have gotten dozens of emails from people who have experienced a multitude of problems accessing the health care system in general and physician offices in particular. These emails have made me retrospective. Is accessing the health care system really that problematic? The short answer is yes. At issue though has progress been made? Again, the short answer is yes. This yes is conditional. Physically barriers, though plentiful, are not as bad as they once were. As a kid I spent much of my childhood in the famed Columbia University Babies Hospital. There were steps to enter the hospital. To access Babies hospital my parents and I would go into the medical center via the emergency room on 168th and Broadway. This could be an eventful at any time and for a naive boy from suburbia I got a real education in diversity going through the ER. Today, Babies Hospital is very accessible and the patient rooms on the neurological floor are nothing short of wonderful. Times have changed drmatically. What has not changed is the cultural response to disability. Disability remains deeply stigmatizing.

I looked at the New York Times article again this morning. The number of comments has nearly doubled and there continues to a gross lack of understanding. People just do not get disability. Disability is first and foremost a social problem that is accompanied by unique medical concerns. Discrimination is very real. Discrimination within the health care system is rampant. If the emails I received are any indication, people with a disability routinely encounter blatant discrimination. The emails I received prompted me to wonder down memory lane. Two thoughts dominated my retrospective thoughts: first, I encountered gross bias as a parent with a disability when accessing health care in an emergency setting for my son. While my son's pediatrician was wonderful, ER staff were routinely hostile at every hospital I entered. Virtually every time I took my so to the ER I encountered outright hostility. My ability to parent my son was openly questioned by one and all. I still seethe over this and am comforted by the fact parents with a SCI report such hostility is out of the norm. Bias exists but it is not as direct as what I experienced. Instead of questioning a parent with a disability directly it is not uncommon for an ER physician to contact the child's pediatrician. This call is made to insure parental competency not inquire about the health of the child. Second, I encountered multiple forms of discrimination when accessing routine health care. When my son was small I spilled a small pot of boiling water on my lap. I had first and second degree burns on my thighs. ER care was excellent but I had a great deal of trouble with my follow up care. Given the importance of skin integrity, I was told to see a top notch physician who specialized in burn treatment. I tried to make an appointment but was refused. I was told the physician does not see paralyzed people. This out right refusal to treat a person with a disability is no uncommon. 

I am sure a skeptic would argue that I am exaggerating. Really, how bad can it be?  Let me provide a few examples. 

I had to get a urine analysis and culture done. A mundane test. I was told to go to a lab near my home. Knowing most labs are not accessible I called about wheelchair access. The four labs closest to my home were not accessible. It took multiple phone calls and about half a day on hold to get this information. I eventually found an accessible lab 25 miles from my house (the closest non accessible lab was two miles away). While I could enter the building to this lab the bathroom was not accessible. I had to exit the building, find an obscure location to urinate in a sterile cup. 

I saw my internist recently. He ordered blood tests. I went to the lab in the same building as his office. I waited like anyone else in a cramped waiting room. After a short wait I was escorted to the treatment area.  It was clear every little booth occupied by a lab tech was not accessible. A major discussion ensued. I could have my blood drawn in the hallway or wait until an accessible treatment room was found. My blood was drawn in a hallway with people passing by. 

The two examples above indicate the range of discrimination--it could be a physical barrier or a physician that simply refuses to see paralyzed people. My problems accessing health care are relatively minor in comparison to people with a higher level SCI. Quadriplegics in my estimation encounter the most problems. Those that use a power wheelchair take up a lot of space and cannot slip though narrow doorways like I can. Quadriplegics need help with things like dressing and transfers. This makes the most basic of tests highly problematic. One story related to me by Theresa Mackay (an Australian) about her husband Dan is indicative of the sort of experience quadriplegics encounter. Mackay wrote that Dan needed an IVP. This is a simple procedure. But things are not so simple when it it is not possible to independently transfer from a wheelchair. Dan contacted the facility where the test had been done before and noted he was a quadriplegic. He was told to call another facility because he could not be accommodated. Again he explained he was a quadriplegic and was told if he brought a "carer" he could be accommodated. Dan also spoke to the radiologist and was assured he would not encounter any problems. He explained that his wife could lift his legs but could not transfer him by herself. Again, he was assured that a bed could be lowered and he could be transferred. Mackay wrote that on the day of the test

We were shown into the room for the IVP. After a while we were told that they would not be able to lift my husband. Don explained that he had been told it would be okay by the Radiologist. The two people speaking to us appeared not to believe Don.

 I know for sure exactly what the conversations he had on the phone were as he uses a “Hands Free” phone and I heard both sides of the call he made. They went outside the room and we were left again. They returned and reinforced their stand that they could not lift. Much of the conversation took place with one of them talking to Don from behind his head, where he couldn’t see her. Finally he asked her to please stand in front of him so he could speak to both of them together.
 All the time this was happening we were made to feel very uncomfortable as if somehow it was all our fault. We were told we would have to leave, and make another booking at the Base Hospital. Don suggested as it was their mistake that it would be easier to ask someone to come in to help lift from one of the other branches, a couple of minutes away. He was told that that would be taking them away from what they were doing.
We said that we would not be leaving the room till the IVP was completed. They went outside again.
 Left in the room for some time, finally we called an acquaintance and her husband and asked could they please help us out. This they did and finally Don was lifted to the table, with not one finger of help from Radiology staff, who stood back and watched.
 We had to do this in reverse when the IVP was completed, which entailed phoning up the lady and her son, as she had had to drive her husband to work in the meantime. Again not one finger was lifted to help us at all and no body seemed to have a clue what to do... My husband was patronised dreadfully. I was very angry with the demeaning treatment of my husband.

I can readily envision this incident taking place in virtually any country or in any hospital in the industrialized world. Like Therese Mackay, this incident angers me. I am angry because it was needlessly dehumanizing.  I am not sure when or if the situation will improve. We are now 23 years post ADA and as I have stated many times the social mandate to enforce the law is absent. Part of the Affordable Care Act will require new diagnostic equipment be made accessible to people with physical disabilities. On paper this is a great idea--especially since the American population is rapidly aging. The reality I suspect will be very different. If the ADA is any guide, hospitals and health care facilities will go out of their way to avoid compliance. Thus the solution is not to be found with more legislation or more laws. The solution revolves around building a strong political coalition of people with a disability. This coalition must connect with other political groups and advocate for inclusion from a position of power. Until this happens incidents that were related to me will remain all too common. And I for one find this unacceptable.


Middle Child said...

Thanks Bill for this - it was as you say very dehumanising - we were luckier than some as there was nearly almost always two of us - and we got some "relief" from the many experiences by mocking the so called professionals and others on the way home. Don could imitate others really well and often I had trouble driving home from laughing because he did it so well... but it hurt so much to see him treated like this, devalued as a human being - and I know how it hurt him... things were already harder to handle, then to have people make it even harder it was as if we were being punished for his being alive. A sort of resentment that you could feel but could never pin down like a racist taunt. Thank you for pushing this...will share the essay.

Shannon said...

I have paraplegia and I can only imagine how much more difficult accessing medical care is as a quadriplegic.

Bill, I am sorry you have encountered so much prejudice as a parent with a disability. I have an 18-yaer-old who was born 8 years after my injury. After he was born, with a few exceptions, most people have kept their opinions to themselves.

During my pregnancy, I did encounter projudice. One of the worst things (which I will never forget) is when a nurse at the doctor's office confirmed the pregnancy. I could tell from her expression that she thought she was giving me bad news and she said "what do you want to do?" I know that it's not good news for many people, whether disabled or not - but why assume so?

I wss advised by several people (including a friend) to have an abortion. One of the ob/gyn residents told me to "stop that" when I was having leg spasms during a pelvic exam. Most of the doctors, though, were fine.

My son gets really annoyed when people think that having a disabled mother is a huge tregedy. He considers it "a minor inconvience" at times, mostly because I don't have a car. Otherwise, he says, it's really not that different. People do attend to assume he is a caregiver to me and they want to know how I am going to get along when he goes away to college. (teenage son giving his mom a bath?).

Shannon said...

Oops, I misspelled tragedy as tregedy. One of our relatives wanted him to write his college application essay on how hard it was to have a disabled mom - he said that would be a really fake essay and wrote about something else instead.

william Peace said...

Shannon, I get great health care when I see the physicians I know. I encounter nothing but trouble when I try to access health care with a physician I have not met. Your comment makes me wonder to what extent gender plays a role in our different experiences? Every paralyzed woman I met who has had a child has told me they encountered discrimination during pregnancy. Have you read Heather Kuttai Maternity Rolls? It is a great book. My son too thinks nothing of disability. He often remarks the issue is not my disability but the stupid way people react. My son got the same advise r.e. college application essay. Write about how hard it is to have a disabled father. Yikes, the level of ignorance regarding disability sometimes astounds me.

FridaWrites said...

Like Shannon, I don't seem to have medical professionals question that I'm a parent much, so it may be in part the intersection between disability and gender. However, I'm always afraid when I take my kids to most doctors (as opposed to dentist, eye doctor, podiatrist) that they'll see me as incompetent and question my ability to parent--not such a big concern as they get older.

However, one has implied that my disability was the cause for my son's and that he wasn't really sick. No, he was really, really sick, and in ways that couldn't be faked. Likely he has a subset of the same autoimmune conditions.