It was supposed to be so simple. For a few years, I had been struggling with some scary sleep issues. Caregivers would come into my house for their shift and be unable to wake me up no matter what they did. The more time went by, the more frequent these episodes became. I talked to my team of doctors and expressed my concern. This issue was causing many of my caregivers to quit. It was also causing some additional medical issues which were occasionally serious. It became increasingly clear that we had to figure out what was wrong. After all the basic tests came back normal, I sought the advice of a sleep specialist at KU Med in Kansas City. She ordered some different tests. I thought I was finally getting somewhere. After three years of frustration and difficulty, I thought I was finally going to get the answers that I needed.I called the local medical center to get on the books to get this test done. I talked to the receptionist there. There was nothing out of the ordinary at first. I gave her my name and my age and the reasons that these tests were needed. When I told her that I was a wheelchair user, she stopped. She told me that she could not schedule the tests for me. When I asked her why I was told that the sleep technicians were not nurses and they would not risk my being there. I freely admit that when I sense any kind of discrimination on the basis of my disability, I get a bit riled up. I told the receptionist that I was frustrated and she told me that she understood. It was the wrong thing for her to say to me at that moment. Unless she had experienced similar discrimination in her life, she had no idea how I was feeling, so I politely disagreed with her. Her response was this: “You are right, Lorraine. I should cut off my legs so that I can relate to you.”
The next person I talked to was her supervisor. I went back and forth with that woman for about five minutes. When I explained to her that refusing to schedule people with disabilities for the tests that they need was discrimination under the Americans with Disabilities Act, she told me that their policy was not discrimination because it had to do with their liability. Anybody can justify discrimination any way they want, it is still discrimination. Being treated this way felt like a betrayal. I hadn’t done anything to these people and what I needed was something they provided to all kinds of other people every single day. Discrimination is demeaning in all kinds of ways. It is also simply not fair.
My next phone call was to the patient advocate at the hospital. I explained the situation to her and told her that I needed these medical tests and had the same rights to them as anyone without a disability. She told me that she would check into things and call me back. About three days later she told me that the hospital was standing by their policy and denying me the tests because their sleep technicians were not nurses. Then, without asking what I wanted, she started calling around to see if I could get the tests that I needed to be done in Topeka. They were even going to pay the cost of my transportation there. I know she thought she was trying to help, but I didn’t want to go to Topeka. I didn’t want to go to an unfamiliar city by myself and to a medical facility that I wasn’t used to given that I knew that there was a place locally, that could easily administer these necessary tests. For a few days, I felt stuck and discouraged. Although this probably was not their intention, it felt like the employees at the hospital were trying to pass me off to Topeka so that dealing with me wouldn’t be their problem anymore. They were telling me they were unprepared for a situation like this, but the ADA has been on the books for almost 31 years, it was time for them to get prepared. I wasn’t going to be okay with being passed off and I wasn’t going to go away. At least not quietly.
I had to call in the troops. I have a friend that I have known for about 20 years. He happens to be a lawyer and once I told him what was going on, he was happy to make a few phone calls on my behalf. Things changed after that. When all was said and done, I got the tests I needed. Two CNA’s were pulled from the hospital to be with me while I was at the sleep center and to accommodate all of my physical needs. All is well that ends well I guess.
Throughout this process, I have had a whole lot of people ask me why it was so important to me to get these tests done locally when I could have gone to Topeka and gotten them done there without any fuss. My answer is simple. This whole thing wasn’t just about me. It was also about all the people who will come behind me in the future and need accommodations due to their disability like I did. Hopefully, my efforts meant that they won’t have to struggle as much, because the sleep center had accommodated me and might be willing to make the same accommodations for the next person who needs them. If I potentially made someone else’s life a little easier, then all the stress was worth it.
That kind of thing helps me to sleep better at night.
So sorry that you had to endure cruelty while attempting to get needed medical testing, Lorraine. I hope that the institution’s administrators understand that they risk tremendous liability when they blatantly violate a civil rights law. Hoping also that the test helped to resolve your sleep issue!