This is the next installment of the What Not to Say series on my blog. If you weren’t following me (or didn’t know me) when the previous ones came out, you can find them here, here, and here. These are based on my experience both as a disabled person and an activist; feel free to leave your thought in the comments.
- Don’t: “So are you at increased risk for COVID-19?”
This is an extremely invasive question and one that, due to the amount of unknowns that still remain around this virus, the person may not even know the answer. This question has a tendency to cause more anxiety for the person you are asking it to. It also pressures us to disclose a diagnosis or medical information that we might now be comfortable with. If you are asking it as a way of asking whether you should put your mask on when you approach us, the answer is yes, please do that.
Also, even if we aren’t immunocompromised ourselves, we are part of a community that has many members at higher risk, and we want to keep our friends safe. Bottom line: You should be keeping everyone safe whether you know that they are immunocompromised or not.
Do: What level of social distancing are you comfortable with?
For example, I am in a pod of 4 people, so I am comfortable with them hugging me and taking their masks off when they get into my apartment or car. But with other people, if we absolutely have to be inside, I am not comfortable if someone is close to me without a mask on. Most of us chronically ill or disabled folks have “internal social distance policies” like this and are happy to tell you if you ask us.
- Don’t: “I can’t wait for things to go back to normal, so that we can go out and our whole social lives won’t be online.”
For many of us, the pandemic has allowed us to be much more social. There is so much less missing out on social events because we are too fatigued or the venue is less accessible. More restaurants are delivering and grocery services have stepped up their game. Schools are allowing students to go to class online. These are accessibility measures that we have fought for over the course of many years, and they have only been put in place because abled people need them now. By saying things like this, you remind us of the loneliness that some of us experience when all of our friends go out without us or we can’t make it on the field trip because it involves too much walking.
Do: “I can’t wait to be able to come over in person again instead of just through a screen.
Every person wants to feel cared for. The previous comment may have been meant to say, “I wish I could hang out with you”, and this is just a way to say it without it being a bit ableist and insensitive. Personally, I really appreciate people who are willing to come to my apartment or places close to me (or who think about accessibility ahead of time).
Do: I hope these accessibility measures stay in place after the pandemic is over.
As much as I sometimes don’t like to admit it, as a chronically ill person, I need abled allies, people who will fight for me and call things out as ableist so I don’t have to be the one doing it all the time. You can be an ally by encouraging your communities and institutions to keep some accessibility measures in place even though abled people are able to go out and about again in some places.
- Don’t: “I know what it’s like to be stuck at home now”
No, you probably don’t. You are able to workout at home, and do many things that some chronically ill or disabled people can’t do. We are still dealing with unpleasant symptoms, and some of the services that we used to be able to have in our homes (cleaning, furniture assembly, in-home care) are no longer accessible to us.
Additionally, for you, this will end. The definition of “chronic” is incurable. That does not mean that we cannot live amazing, happy lives, but it means that our limitations may increase or remain the same even when the pandemic is over. You will be able to leave.
- Don’t: You’re so strong for making it through this time.
In the chronic illness community on Instagram we have been talking a lot about the words, “resilience” and “strong,” and why they can be difficult for us to hear. We didn’t choose this experience (the pandemic or the disability/chronic illness), and having to live up to the productivity standards of abled people is exhausting for many of us. The use of “strength” and “resilience” tends to romanticize our suffering, portray it as temporary, and hide from really important questions about mortality and accessibility that need to be addressed.
I don’t always want to be your inspiration (blog post on this coming). Sometimes, I want to sit around and complain about petty things or just lie in bed for a full day. My disability is going anywhere, and being strong takes a heck of a lot of energy.
Do: “I really appreciate you spending your time and energy on “insert activity or task here.”
I will be honest; I really just wanted to slip this one in here because someone said it to me, and I loved it. People who recognize that people with chronic illnesses or disabilities may have limited energy are my favorite kind of people (looking at you, Cinci Pod). So what does this look like it practice? It looks like planning ahead, not being late, bringing supplies if we are doing something.