The stigma surrounding disability and chronic illness is so deeply rooted in society that it can thrive while still perfectly concealed by its normalization.
It is so concealed that when a disabled person dares to bring it up or call it out, they are quickly dismissed and silenced by how certain ableds are that ableism “doesn’t exist” or “can’t be that bad.” Ableism is a spectrum, and someone doesn’t have to be maliciously cursing to be guilty of doing or saying an ableist thing. It doesn’t have to be said to be conveyed- so when it’s being conveyed by loved ones, it’s all the more disheartening.
You have a friend you feel safe with. Then when you bring up your disability, they become awkwardly silent. You have a friend who says they are there for you. Then you mention your disability and they ignore the words like they don’t even exist, and change the topic to better suit their personal abled comfort. You learn a friend complains about you behind your back whenever you talk about your illnesses. Your friend continues to treat you and your existence as a disabled person the same even though you thought you finally got through to them. You reach out to an old friend, and the conversation crumbles when you say “yeah, I’m still sick.” You don’t hear from them again. You’re really excited about something related to your illness, and when you go to talk to your best friend, they only go “ohhh” or “ok” at most. You find out your friend brags about pushing your wheelchair to show off what a good person she is “by helping a cr*pple” …the list never ends.
Changing the topic and avoiding discussing disability can do more harm than good. Switching the topic to one you consider “lighter” to cheer us up maybe a good-hearted intention, but in the process, you’re associating the topic with sadness- and perceiving mentions of disability as by default, negativity.
No one is expected to be an at-the-ready perfect advice-giver, and that’s not what we expect or ever will from someone. Ignoring, or changing the topic can really hurt. It can feel invalidating and dismissive of not just our emotions, but our existence entirely. Some people ignore disability-mentioning messages like they aren’t even there then shift the topic to anything else. The ambiguity is agonizing – why? Was it from coldness, insensitivity, ignorance? Was it from fear or denial? Was it from simply just indifference? For me, the anxiety would begin to build up. Help me understand- I need you to. Please don’t give up on me. Please don’t let this be what makes you tired of me. Please know better, please listen to me when I clarify and assure you –
See me. Not me “but sick”. It’s that simple.
To disclose, discuss, or mention disability is not being negative, pessimistic, morbid, depressing. Talking about disability is not automatically a rant. It can be happy. It can be chill. It can be anything.
We take on the responsibility of another person’s comfort, but that energy is wasted when the person’s comfort is only kept up by watering ourselves down to please them. I felt like if I just existed quietly, then I’d be acceptable. I didn’t want to risk making them uncomfortable, I was scared of driving them away. I let myself believe I was the issue who needed to compromise, not their subconscious “ableism”. It’s not like they know anyways, but If I bring it up to them they’d just paint me as overreacting so it’s fine, I’ll just… fix this. I compromised with myself to try not to mention my symptoms in any way around them. When I didn’t, no awkward situations seemed to pop up. They became less distant- it felt like I had gotten my friend back. And all I had to do was not talk about being disabled… All I had to do was erase and silence myself. Subconsciously, all I accomplished was the perpetuation of disability being associated as a negative thing to be shameful of. In the process of trying not to let people down, I had only let myself down.
When we are sad about our disability or feeling sad because of something regarding it, that does not mean that is how we view our disability. It does not mean we are being pessimistic, giving in, or letting life get to us. When we speak about our disabilities’ impacts and limits, we are not speaking for every other disabled person. Do not use us as the default perception of what disability is, and use that when judging other disabilities.
I felt like I had to explain my emotions and their validity to safely express them. How do I rant without making them confuse my rant for proof disability is actually a depressing thing? How do I show my excitement and happiness without being accused of not being “That sick”? How do I share about something I was able to do without them assuming I’m getting better? How do I express frustration about my limits without reinforcing the “disability limits are depressing” thing? Having a chronic illness can make me depressed. It can make me frustrated, it can make me heartbroken and terrified, it can break me and leave me feeling lost. These are emotions, not definitive labels.
Image Description: Screenshot of the author’s tweet, which says: #WhenICallMyselfDisabled I am not being negative or depressing. I am not “giving in” or being pessimistic, I am not insulting/minimizing myself because disability is not a bad word, negative thing, insecurity, or a mood-killing curse.
Disability can be isolating – Check in on your disabled friends. Every text, every small message. Every meme, every call. Each and every one of those is beyond appreciated, looked forward to and cherished. They mean the world. Love us with our disabilities, not despite them. Our worth is not measured or dependent on whether or not we get better. A good day or happy mood doesn’t invalidate the extent of my chronic illness, and does not mean I’m “getting better.” A good day is a good day. A good day is amazing- make it more amazing by being here, with, and through it with me.
