Over the last few years, I have read several books and numerous articles that cover the topic of ableism. There are people I know who have all kinds of lofty definitions as to what it means, but I like the definition a friend of mine came up with recently. He said that ableism is a casual condescension toward people with disabilities. There it is. Plain and simple. In my head, it means that people without disabilities think they are better or know better than people with disabilities. It shows up everywhere, and I can say with conviction that I encounter some form of ableism at least once or twice per week.

Some examples of ableism:

  • The x-ray tech at the hospital insisted that my caregiver come with us to get me on the table because she did not believe that I could explain to her how to help me by myself. When I brought to her attention that she never made eye contact with me through the whole interaction and that she had talked about me several times like I was not in the room even though I was sitting right in front of her, not only did she not apologize, she justified her behavior.
  • A woman from my church who happens to be a physical therapist and had a daughter in nursing school. They came over one night because I was shorthanded on caregivers and they had agreed to help me to bed. They came into my house and the physical therapist came over to me and put her hand on my shoulder. Then she looked at her daughter and said: “See, this is an example of someone who has too much spasm in their body.” In the space of that one sentence, this physical therapist took away all my dignity and my humanity. I felt like a freak show at a circus. She had not asked my permission to use me as an example, but even if she did, that was an inappropriate thing to do; especially in my house, where I should always feel safe and comfortable. This physical therapist invited her daughter to gawk at my perceived imperfections like I was a lab rat on display. When I told that mother how much the interaction had bothered me, she dismissed it, telling me that she was justified in what she did because her daughter was in nursing school. She and I do not talk anymore.
  • One of the caregivers that I have had recently has been exceptional. He is always polite and respectful, and he works hard to do the things that I need him to do when he is working. Because the job of being my caregiver is so personal in nature, it did not take long for this particular caregiver to become my friend. At the time when he was working, I was incredibly short-handed when it came to caregivers. (That is an ongoing problem.) Therefore, he worked a whole lot of hours. When I hired a new caregiver as part of my team, I was surprised by what she said when she attended her first scheduling meeting. When she discovered how many hours the first guy worked for me, she looked at him and said: “You will get your reward in Heaven for all you do for Lorraine.” His response was perfect. Without skipping a beat, he said: “Who said I was going to Heaven?” Her attitude was ableism at its finest.
  • There was one night that one of my former caregivers and I were in the kitchen cooking dinner. She was asking me about my siblings. She was going to school to become a physical therapist. One of the things that I told her about my brother was that he had been paralyzed in a car wreck years previously, and that resulted in him being a wheelchair user like me. She went on to ask more questions about his life currently and she was stunned when I told her that he was married. At that point, she assumed that he and my sister-in-law must have been engaged at the time of his accident. When I told her that wasn’t true, that they had met several years after he was injured, she was more surprised and said in a very syrupy way that my sister-in-law must be a very special woman. I am not going to deny that my sister-in-law is special. I believe every one of us is special in our own ways, but the fact that my sister-in-law fell in love with my brother after he became a wheelchair user does not make her special in and of itself. Was this caregiver talking about the tremendous perceived sacrifices my sister-in-law must have to make to be with my brother? Did this caregiver not think that people with disabilities could fall in love and getting married? Did this caregiver simply think that nobody with a disability could be attractive to someone without a disability? Ugg! The whole conversation made me crazy. Needless to say, that caregiver didn’t work for me very long. I would much rather be around people who have a better attitude toward those of us with disabilities…
  • A few years ago, I went out to lunch with one of my caregivers. We saw the hostess and waited to be seated. The young woman who was the hostess looked me up and down and then looked at my caregiver and said: “Do you need a children’s menu for her?” I was in my late 30’s at the time. My poor caregiver didn’t know what to do, so after the initial shock wore off, I looked at the hostess and said “No thanks, I am pretty hungry. I think your adult portions will be just fine.” The hostess seemed surprised that I could speak. And that is classic ableism.

I would be the first to say that ableism sucks. It is demeaning and, on some days, it crushes my spirit. Unfortunately, it is a societal norm. However, as I look back throughout history, my impression is that people don’t grow and expand their thinking unless a group of loud advocates look at societal norms and cry “Bullshit! We deserve something better!

Think about it. This has happened with all kinds of minority groups. According to Wikipedia:

  • Interracial marriage was not legal in all 50 states until 1967.
  • In the 1980s, the government recognized transgender individuals and allowed them to have sexual reassignment surgery
  • Gay marriage was not legalized in all 50 states in this country until 2015
  • Gay adoption was not legalized in all 50 states until June of 2017.
  • It was not until July 26th, 1990 that the Americans with Disabilities Act was signed into law making it illegal to discriminate against people with disabilities in the areas of employment and public accommodation, among other things.

All those things happened because someone looked at a societal norm in the eyes and said because this is wrong and I or we are going to work hard,  we are going to do what it takes to make it right. Doing that kind of thing is by no means easy, but that is one of the ways people can use their power. They can channel the negative experience to make positive changes. That way, the world is a better place for generations to come. And I cannot think of anything better than that.

Therefore, I do not buy into the school of thought that I have heard from some other people with disabilities that ableism is a source of shame. Once you say an “ism” is responsible for heavy negative emotions like shame, you run the risk of being a victim. And as a woman who has been a life-long wheelchair user, “victim” is the last way that I want people in society to perceive me. In fact, if I bought into the idea that ableism is never going to change, and people are always going to treat me like I am “less than” that is when I am inviting the world or at least some people in it to treat me like Tiny Tim. And from the way I see it, that simply reinforces the idea of ableism that some people with disabilities say is so bad.

I will freely admit that when people choose to treat me like I am a second-class citizen because I have a disability, most of the time I take it hard. I let it sink in and there are even some moments when I cry or yell and scream, cursing the unfairness and indignity of it all. But I can’t stay in that space for a significant amount of time. After I have been able to process some of the negative emotions, I feel it is my responsibility, in my opinion, to do what I can to change that situation. That might mean calling the patient advocate at my local hospital (she knows me well) and explaining to her exactly what happened and why something somebody on the hospital staff did was so offensive to me. It might mean that I create a seminar for students planning to go into the healthcare profession so that they have some tools to empower people with disabilities from the very beginning. And on some occasions, it might mean that I have to check in with myself and find a way to accept a situation that wasn’t right or wasn’t fair because I have learned over time that I am not going to win every battle or expand the mind of every person I interact with, no matter how much I try to do so or wish that the situation was different.

I know that all my efforts to talk about empowering people with disabilities are not going to change the world. But I can do my best to change the world around me. And it is only going to be through that kind of change that ableism is a thing of the past.