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.