This is my latest submission to Chicken Soup for the Soul. The theme for the book is Think Positive. Happy Disability Pride Month, everyone!
I sat in stunned silence as I hung on to the phone, not sure how to process what I had just heard. I was talking to the receptionist at the sleep center in my community, trying to schedule some tests ordered by a sleep specialist in Kansas City. When I told her I was a wheelchair user, she stopped the process and told me that she could not schedule the tests. Apparently, they don’t offer these tests to people with mobility impairments, because “their sleep technicians are not nurses” and then she told me I would have to go somewhere else. That was their policy.
“But under the Americans with Disabilities Act, that policy is a violation of my civil rights. It’s not legal.” I said, unable to keep the rising frustration out of my voice.
“I understand,” came her reply.
It was the wrong thing to say to me at that moment. Unless she had been discriminated against because of something outside of her control, she could not possibly understand what I was feeling. I told her so.
“You’re right, Lorraine,” she replied, “I should cut off my legs so I can relate to you.”
Did she seriously just say that to me?
I talked to her supervisor next and went back and forth with her for about five minutes.
“This policy is not discrimination,” she reasoned, “because it has to do with our liability.”
Anybody can justify discrimination any way they want, it is still discrimination. I moved on to speak with the patient advocate at the hospital. After explaining the situation and telling her that I had the same rights to these tests that anybody else did, she told me that she would investigate. Three days later she called and told me the hospital was standing by its policy. Then, without my permission, she began to call around and plan for me to have these tests done in Topeka. The local hospital was going to pay the cost of my transportation there and back. I wasn’t interested. I know she thought she was helping, but I didn’t want to go to an unfamiliar hospital in a city that I wasn’t used to in order to go through tests that could be conducted locally. It felt like the local hospital was trying to pass me off so that I wouldn’t be their problem anymore.
Being treated this way felt like a betrayal. I had not done anything to these people and all I wanted was access to the same tests they offered to those without mobility issues every single day. Staff at the hospital kept telling me they were unprepared for a situation like this. The Americans with Disabilities Act had been federal law for more than 30 years at that point. It was time for them to get prepared. I was not okay with being passed off and I was not going to simply go away. At least not quietly.
Since I was not being taken seriously, I reached out to a good friend who happens to be a lawyer. He offered to advocate on my behalf. Things changed after that. When all was said and done, I got the tests I needed in my hometown. Two CNAs were pulled from the hospital to be with me during my tests at the sleep center so they could accommodate all of my physical needs. That solution is what they should have offered from the beginning. I know “all’s well that ends well” but the whole experience shook me to my core. I didn’t like that the staff at the hospital so casually thought their discriminatory policy was reasonable, or that they disregarded that the policy was in violation of federal law.
I have spent most of my adult life learning to embrace my disability and I don’t see it as a bad thing. To me, the fact that I am a wheelchair user is simply who I am. I tell people I have a disability in the same way that I say I wear glasses and I like ’80s music. It simply is what it is. The situation at the sleep center made me more determined than ever to do everything I could to help people learn to empower those of us with disabilities instead of patronizing us or treating us like we are second-class citizens. I just wasn’t sure how to accomplish that.
A few weeks later I was messaging a friend. He is also a wheelchair user and he told me something I didn’t know.
“Hey Lorraine,” he said in his message, “Did you know that July is Disability Pride Month?”
I had never heard of it. He went on to explain.
“In the same way that June is Gay Pride Month and lots of people protest injustice as part of Black Lives Matter, Disability Pride Month is an opportunity for people with disabilities to take pride in who they are. There is even a Disability Pride flag and major cities have parades all over the country.”
I was intrigued, so I did some research. The first Disability Pride Parade was held in New York City in 1990 to celebrate the signing of the Americans with Disabilities Act into law.
The more I pondered the idea, the more it made sense to me. All the people with disabilities I know have grit. They navigate their lives in the best way they can. They thrive even though they have more obstacles and less ability than those in the typical population. They do whatever it is they have to do in a day, to make their lives work. Some deal with chronic pain, physical or mental. Some live with conditions that will progressively get worse. But they all carry on. They don’t let disability define them or engulf who they are. That is something to celebrate and take pride in.
I talked to some friends about having a Disability Pride parade and we are all excited. I envision us, along with our allies, marching in our community. Some of us will be holding disability pride flags and some wearing disability pride t-shirts, with our heads held high, proud of who we are and everything we accomplish. It’s going to be a good way for us to demonstrate disability as diversity and send a message that nobody should be okay with treating us unfairly because of it. My hope is that as the community sees our confidence and courage, they will believe that we deserve the same access to everything that typical people in the community receive without question.
That thought helps me to sleep better at night.