We all have that moment — the first time we try to explain something about our disability to someone who doesn’t understand it. For me, that moment happened when I saw my mother about three months after my injury. 

I had a car accident when I was almost 19 years old. I immediately traveled to Tel Aviv, Israel, to participate in a new FDA clinical trial where I spent several months before coming back to Craig Hospital in Denver, Colorado. My father traveled with me while my mother stayed home with my two younger brothers. I left for Israel functioning as a T6-7 complete para — no feeling and no movement below my injury level — and returned with some sensation and muscle control but also some significant new spasms. 

When I got to my room in Denver, my legs started spasming on my first transfer. My mother was so happy to see my legs moving! She started crying and celebrating her answered prayers for her daughter. She had no idea that what she was seeing was not voluntary. She had no idea that her tears of joy were misplaced. I hated having to tell her, “Mom, that’s not me. They’re just spasms, and I can’t control them.”

After 21 years in a wheelchair, I have a lot more experiences like this to draw from, interactions in which people make assumptions about my disability without knowing the full details. But how much should we expect people with limited personal experience with disability to understand? How should we expect them to act? These are questions that have been bouncing around in my mind for a while, but even more over the last few years with the growing use of the term “ableism.” 

Ableism is a word we’re hearing more often, and it has been formalized to the point that you can now find it in most dictionaries. Merriam-Webster defines ableism as “discrimination or prejudice against individuals with disabilities.” Makes sense. In context, that’s consistent with how prejudices of all kinds are defined. The “isms” we all know — racism, sexism, ageism, etc. — are all forms of prejudice based on different characteristics. But how do you define prejudice? Using Merriam again, prejudice is defined as “an unfair feeling or dislike for a person or group because of race, sex, religion, etc.” Again, makes sense. We all seem to have a basic understanding and agreement of what these terms mean and what they look like in action. At least that’s what I thought. 

Take Care to Recognize Ignorance — and Educate

I can still remember going back to college after my injury and how nervous I was. I had attended my freshmen year before my accident, so I had a lot of questions about what this new college experience would look and feel like. There I was pushing my wheelchair along a campus sidewalk and feeling pretty good about how the first few weeks had gone. And then there they were: two stairs. Where did these come from? I certainly had gone this way before during my freshmen year, and I had never even noticed the stairs. Now I had to turn around and go another way. I ended up late for class. 

My professor was very understanding and started apologizing on behalf of the university for the stairs. I tried to reassure her that I was OK. I mean, I had been on campus before my injury but never noticed them before. How could I hold her to a standard I couldn’t even have met a few years earlier? Let’s be honest: I only noticed the stairs when I had to. 

For someone to be prejudiced against something or someone, they must have a certain level of awareness of what they are prejudiced against. For example, I work from home full-time. There are several people I work with whom I have never met in person, and they have no idea that I’m paralyzed. If a colleague exhibits any bias toward me, I can’t say it has anything to do with my having a disability. They are completely ignorant of my situation, and ignorance lacks intent. Again, Merriam defines ignorance as “the lack of knowledge, education or awareness.” As a community, we need to choose to actively recognize that there is a difference between prejudice and ignorance.

And I really do mean community. I belong to several online disability groups and forums. There is so much compassion and support we offer to those who are struggling with similar issues. We share advice on medications, procedures and our experiences. However, in recent years, I have noticed assumptions of prejudice in some of these forums when it’s truly an issue of ignorance. 

If someone is talking to me and assumes I’m not able to work — yes, that’s happened to me — I don’t get angry. I try to take the opportunity to educate that person so they understand that some people have disabilities that prohibit them from working, and some do not. I don’t know what the person I’m talking to has experienced. Perhaps they had a relative who was disabled and was unable to work, so they assumed I was the same. That’s what people do. We make assumptions based on what we know and/or have seen. Even in the spinal cord injury community forums, there are many times I don’t know what medication or procedure people are referring to. That doesn’t make me prejudiced; it just makes me ignorant. Disabilities are extremely complex. Even those with the same spinal cord injury level can experience vastly different levels of pain and independence. So how reasonable is it to expect those who may have never dealt with our type of disability to always make correct assumptions?

Empathy Goes Both Ways

That certainly doesn’t mean I haven’t experienced prejudice. I can remember being at a conference for work that didn’t have accessible transport to the offsite activities. That wasn’t too upsetting at first, given that I just followed my colleagues in a cab that the organization paid for. For the next offsite event, organizers hired an accessible transportation company, but I could tell fairly quickly that it was typically used by elderly riders. This was overkill for my injury level, and I let the staff know I would be more comfortable following in a cab. Keep in mind that this interaction occurred in front of all of the conference participants as they were boarding the buses at the same time. Then the transport driver and one of the conference leaders proceeded to have a conversation about me — while I was sitting there, right between them. They talked about me and over me like I wasn’t even there or able to hear them. That willful disregard of my agency was disrespectful, upsetting and crossed the line into prejudice. I wasn’t the only one to notice. Several other conference leaders later apologized profusely. 

Another memorable experience happened when I was getting out of my car. An older gentleman was walking by, and he turned to ask if he could help me. I politely declined. But then he did something I did not expect. He took a few steps, then turned and asked, “Do you mind telling me why you don’t want any help?” Well that was a first! I had to laugh. Then I said, “Honestly, it will take me longer to try to explain to you how you can help me than if I just do it myself.” He tilted his head and smiled. He nodded with understanding and told me to have a wonderful afternoon. This man was not trying to be condescending in any way. He saw someone lifting a chair frame through a car door — and let’s be honest, it’s not always a graceful-looking process — and wanted to assist. It was more about him wanting to help than anything else. But it’s easy to internalize these reactions as a personal affront, something I’ve been guilty of at times.

There’s a quote attributed to Benjamin Franklin: “Being ignorant is not so much a shame, as being unwilling to learn.” Like many in the disability community, I’ve experienced both ignorance and prejudice, and I feel like we must acknowledge the difference. Otherwise, we open ourselves up to being stereotyped as angry, bitter or unreasonable wheelchair users. People are naturally curious. Being empathetic cannot be one-directional. 

We are asking those who do not have a disability to seek to understand us and accommodate. How is it reasonable to not do the same? Whether we realize it or not, we have power in these conversations. We have the opportunity to open up conversations and educate — or shut them down to the point where people stop asking questions. My hope is we all seek to do more of the former.

This is a guest opinion piece intended to spark thoughtful discussion about issues affecting our community. Please, let us know what you think by commenting below or contacting us here.