If there was one word I could ban from the dictionary, it would be “inspiration.” The reason why I think this word is so particularly horrible is because of the way it is frequently connected to people with disabilities and chronic conditions. I believe it both glorifies and belittles the reality of living with a disability.
My relationship with this word is complicated. Before I started having medical issues, I was called an inspiration because my sister was severely autistic. Looking back on it, nothing could have sounded more ridiculous than being called an inspiration for going to school and doing what everyone else was doing. My peers who did the same things as me didn’t get called an “inspiration,” so it was quite strange to hear this word applied to me.
Being called an inspiration was damaging because it created an extremely high standard for me to live up to. As a sibling of someone with severe autism, I always felt I had to sort of “make up for” the difficulties my sister faced. Being called an “inspiration” made me feel like I had to be perfect, when in reality no human on this planet is perfect.
I also found this term to be incredibly demeaning to my sister. Was it really that terrible to have a sister with autism that I must be an inspiration for living with her? You wouldn’t call a person with a neurotypical sibling an inspiration because they lived under the same roof as their sibling. I’m not going to say everything was easy, and that I didn’t have hard times with her growing up, but calling me an inspiration for doing what a good sister should do was nothing short of ableism.
I put that all aside until about six months ago, when I started to feel really weak and was in quite a bit of pain. I started seeing a lot of doctors, and went through months of knowing something was wrong until finally getting a treatment plan. I felt debilitated at every point, yet once again I did what everyone else did. I went to class, took my medicine and went on with my life despite it being harder.
During this complicated process, I spoke at a conference in D.C. about my work in developing inclusive cycling programs for people with disabilities. After my speech, someone went up to me and called me the “i” word, and I re-discovered my true annoyance for it. My first reaction was to smile politely, but inside I didn’t know what to say. I was in a professional setting and didn’t want to appear like I was overreacting. I understood that this person was probably moved by what I had said earlier, but I also once again felt uncomfortable being described as an “inspiration.”
You see, no one calls you an inspiration when you’re sitting at home in bed because you can’t get out of it. No one would call the amount of creams, pills and portable heating pads I keep in my bag at all times “inspirational.” There is nothing inspiring about my endless stream of doctor’s appointments, and not knowing how I’m going to feel when I wake up the next day.
A lot of abled people have the idea that disabled people are not able to accomplish basic tasks, and therefore we must be inspirations for getting out of bed in the morning. We must be inspirations for going to work, exercising and just living our lives like anyone else would. This couldn’t be further from the truth. Disabled people may have hardships accomplishing basic tasks, but there is nothing inherently inspiring about our existence. Disabled people don’t exist to be your morning dose of inspiration. If you wouldn’t call a person without a disability an inspiration for going to work or riding their bike, why would you say it to a disabled person?
The truth is people should not be glorified for their morning routines, as it’s intrusive and annoying. When we talk about disability, let’s remember that disabled people are regular people who are just trying to live their lives like anyone else.