Don’t infantilize me: Combating everyday examples of ableism
No, I don't need to wear a bell; in fact, I'm strong and capable of much
That’s exactly what happened to me. It took me two years to get diagnosed after the symptom onset with my first pituitary tumor, and then six months to get diagnosed with a recurrence. Because of that, I have weak muscles and bones and often have to use mobility aids to help me through the day.
Since then I’ve experienced a lot of ableism surrounding my disabilities, even though my illness is mostly invisible, especially when I’m wearing clothes. The bruises, cuts that won’t heal, striae, and buffalo hump all hide beneath my clothing. Even with my mobility aids, I don’t use them all the time. Still, I’ve faced biases.
One of my worst experiences occurred at a rock concert, where people came up to me over and over again to comment on my attendance. One person told me how amazing it was that I showed up, even though I had “every reason not to.” Another person told me I should carry a bell so that “people know you’re there.”
Those were just two of the many comments I received that night, which doesn’t include all the times people stepped over me — or that the section for people with disabilities had no ramp, so it wasn’t accessible to me.
I’m no stranger to infantilizing, which occurs when someone uses patronizing language or tone, as if to a child, when talking to someone with a disability. Sometimes when I’m in my wheelchair, for instance, people will talk slower to me. I’m perfectly capable. I simply use mobility aids to support me.
When my partner pushes me around in my wheelchair, I’ll often experience people asking him questions about me instead of speaking to me directly. I’ve even had to grin and bear people telling my partner that he’s “such a good man” for staying with me — as if being with me was a never-ending burden.
A lot of what I experience day to day are microaggressions against people with disabilities. A prime example is when people question why I need mobility assistance. Because I’m not using an aid every second of the day, I’ve had a lot of commentary that I’d be better off, and stronger, without them. I’ve also had people question my need for help when I’ve been allowed to skip lines at festivals or parks.
I’ve also had people offer to pray for me so God can fix me. I appreciate the sentiment behind prayer, but I’m not a religious person. God can’t fix me, and I don’t need fixing. I’m great exactly how I am!
I’ve also had people tell me that they know what’s best for me. For example, they’ll say that if you eat x and y, that will be better for you. Spend more time in the sunlight, they say. Try yoga. Try running. Try swimming. Keep a positive attitude. What you have isn’t as bad as a, b, or c.
That’s all very frustrating. I have a team of doctors helping me determine what’s best for my body, and I trust in their judgment.
Disabled people are also sometimes targeted as sensationalized inspiration. We can even be used to prop up others. There are videos of caregivers helping disabled people, almost as if they’re just so incredible. It’s wonderful when caregivers tell their stories, but that’s different from using a disabled person for clout.
The most effective tactic I’ve found for ableism is simply to speak up. Humor is my favorite coping mechanism, and I can call people out through jokes. My other favorite way to combat ableism is to play dumb and make them explain their comments, as I did in this conversation:
“You [my husband] are such a good person for being with them!”
“What do you mean?”
“Uh … I … your husband is a good man for staying with you.”
“Staying with me? What do you mean?”
“Uh … .”
Making them confront their ableism is my favorite tactic because it requires the least amount of work from my end.
I’ve found love and friendship in the chronically ill and disabled community. I’m proud of who I am and the communities that I’ve built. I’m not less than, I don’t need help, and I don’t need to be fixed. If there’s anything I want people to remember about me, it’s that I’m strong, capable, and very happy with who I am — not in spite of my illness, but because of it.
Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Cushing’s.