Disability - 'it’s not really noticeable'/'I couldn't tell!'
March 2, 2021 12:52 PM   Subscribe

I am disabled because of having a stroke. I didn't think the effects would be permanent but they are. I have aphasia and fatigue as the main things. I am so sick of other people saying things like 'I didn't notice much' or 'I can't really tell' when it comes to the aphasia and brain fog and all that stuff.

That's when I share details about my condition with new people, or when I mention things to people I already know. At the beginning I would kinda pander to them, because I guess they were being nice?? Now I feel like people just keep telling me that I'm doing really well at not appearing disabled.

So, do you have any good examples of pushing back on this? Ideally I'd like to make people think about disability in more inclusive/compassionate way rather than focussing on appearing 'able' and 'ok'.
posted by peepofgold to Human Relations (12 answers total) 6 users marked this as a favorite
Best answer: Well they're trying to be nice, and/or thinking they're being comforting and/or simply reaching for a response where they feel one is required and they don't really know what they should say.

Generally speaking I don't think we do a great job of preparing people for conversations around disability, death, loss, etc. and so people fall back on "what would be a polite thing to say" or panic.

A possible response would be something like "it may not be apparent, but that's the thing about disabilities like mine, they're hard to see and so I have to tell people about them. The reason I told you is because I felt you should know that I do have a hard time with aphasia, fatigue, and brain fog sometimes."

If you feel like it, you might add something like "I know it's not obvious, which is why I tell people so that they understand my disability and can be more inclusive. Instead of saying I appear 'able' here's what you can do that would really help me." (If you have some things they would be able to do like pause more for you to speak, or ensure that activities/meetings have frequent breaks or whatever would be helpful to you.)
posted by jzb at 1:08 PM on March 2, 2021 [19 favorites]

Best answer: What is the outcome you're looking for?

I have a congenital disability that I've worked hard to compensate for and most people don't notice, even though it impacts me almost all the time and statistically will shave a few years off of my expected lifespan. As a general rule, I don't require accommodation for it, so when people tell me they didn't realize that I have it, it's not a big deal. It sounds like people are trying to be reassuring to you rather than uncompassionate.

Is your concern that people aren't willing to give you accommodations or patience when you need it because they don't think your disabilities don't actually require them because they perceive you to be "normal"? Or that you have to expend too much effort to appear to be "normal" in ways that benefit them but not you? Or that you'd like them to be proactive in asking if they should adapt for your needs rather than you having to ask?
posted by Candleman at 1:29 PM on March 2, 2021 [6 favorites]

Best answer: You could say "Well, I do notice it myself, and it takes a lot of extra energy to compensate for it" (if that is true, of course). Direct, brief, and it may get the point across.
posted by Too-Ticky at 1:38 PM on March 2, 2021 [18 favorites]

Best answer: What comes to mind for me is the idea of offering up a collection of true statements in response, sort of like: "You know, I actually hear that a lot..." (Which is true, and may provide the person a window into your experience as well as the awareness that this type of response may be becoming somewhat tiresome for you to hear.) Followed by something like :"Sometimes I wonder if what people mean to convey is..." (Here, you could add in the idea that the comment is offered in a well-meaning way.) Finishing with: "The reason I tell people, though, is that visibility of these aspects of myself is..." (Here, you would be making a true statement about the importance/value to you about being transparent about the effects.)

I get that this may not work for you at all! Just offering it up. I hope you find some good words that help you say what needs to be said.
posted by dreamphone at 2:03 PM on March 2, 2021 [8 favorites]

Best answer: I understand your ire. I currently have a chronic condition that results in fatigue and brain fog and have at least once lost it with a friend (who works as a disability advisor!) who said "Well, you look well" more than once when I was talking about how I'd been. However it's meant, it feels so invalidating, it really comes across as someone completely disbelieving your own account of your physical experience of the world.

A useful phrase if you're looking for resources is 'invisible disability' - I had a quick look and found this book though of course that would mean having the mental energy to read it. Maybe you can give it to some people?!

This short page might be a good one to email people and say: "Could you have a read of this? I think it might help you understand my situation better."
posted by penguin pie at 2:16 PM on March 2, 2021 [3 favorites]

Best answer: Your ask makes me think about how we've made a switch from thinking "I don't see color" or "I'm colorblind" are helpful or positive statements, to understanding that it's important to actually acknowledge how differences in race, ability, gender, orientation and the experiences those people have. It's a form of recognition of history and respect for the person as they are and not how they do or do not conform to dominant culture.

Personally, I think it's fine to gently correct people. Let them know that you embrace yourself as you are now and you aren't trying to fit into dominant culture or hide parts of yourself. Help people know how they can be your ally by recognizing your level of ability and making sure that the environment and norms are inclusive of you so you don't have to be someone you're not.
posted by brookeb at 2:25 PM on March 2, 2021 [6 favorites]

Best answer: I like jzb's first script. And I agree that people are trying to be nice here. I get why this is annoying (I have a learning disability, and sometimes when I've told people they say "Oh, but you're smart!"), but I think the most productive thing is to just positively/kindly remind people that nobody can perceive what's going on inside other people.
posted by coffeecat at 3:23 PM on March 2, 2021

Best answer: I think other people's good intentions, or natural sense of politeness, feels like it's second-guessing your reality or undermining your experience. I expect you may be still struggling with management or acceptance issues, which make it hard to feel good about good intentions, especially if the commentary, at some level, remind you of your own response to supposedly fleeting effects that weren't.

So I wonder if you wouldn't feel better, at least for now, if you kind of ... scripted your preferred response. This helps address both both your listener's immediate issue of how to respond and your issue of your own emotional emotional response when they don't say the right thing.

So, for example, when you next disclose details of your disability, what about prefacing it with: "No need to comment..." or "I know it doesn't always show..." or even "No need to try to find the right thing to say. I'm accepting it...." or however if feels best **to you** to frame it.

A big hug.
posted by Violet Blue at 5:54 PM on March 2, 2021

Best answer: I just reread my comment, which was largely focused on your second sentence: "I didn't think the effects would be permanent but they are," and realized I didn't really address your last sentence: "Ideally I'd like to make people think about disability in more inclusive/compassionate way rather than focusing on appearing 'able' and 'ok'."

My advice is an edited version of my last post, however. Try to pre-empt folks, and in an even tone, by saying something like, "Like lots of people, I know I don't look like I may struggle in any way, but..."
posted by Violet Blue at 6:00 PM on March 2, 2021

Best answer: “Sure, but it’s actually not my goal to appear not-disabled. I wish we as a society were more inclusive of people with these kinds of challenges, which is why I’m bringing it up.”
posted by samthemander at 8:49 PM on March 2, 2021 [4 favorites]

Best answer: I'm answering this from my perspective dealing with similar symptoms myself, though a different cause, so obviously there's lots of room for variation in those symptoms - I'm not saying it's exactly the same, or that this is absolutely what is going on, just to be clear...

I have two physical issues that don't yet qualify me as disabled, though they certainly could in the future, depending on how things go. It can also vary depending on the medication I'm taking - at this time, it is effective; it has not always been and may not remain so.

On a good day, it's mildly annoying; on a bad day, it can be really challenging to function. The thing is, unless I'm in a really severe amount of pain, I could still mostly do my job. I might not be quite as fast, I might have to use a lot more effort mentally, and I might be much quieter than usual - but most of the time, coworkers weren't aware how much of a struggle I had going on internally unless I actually told them so. And then at most, I'd get asked if I had a headache. There was just zero level of understanding, especially frustrating when instead of operating at my normal, 100 percent capacity, I felt like I was stumbling along at maybe 20. Thing is, some of the people I worked with - that's all they were operating with ANYWAY, at their best. So it's not like they were in any shape to notice.

So... I guess what I'm saying is, it really is possible that while you FEEL and KNOW you're very different because you've lost access to your previous capacity, it's possible some of the people you interact with may not be paying enough attention to be aware, or may not even be capable of awareness. In other words, it's possible that while you KNOW there's a huge gap between was what and what is, a large portion of that gap may not be apparent to outsiders.

Any which way, you have my sympathy. I know it's been horrid for me when I feel like ME is vanishing, or subdued, or impossible to access - and it's made exponentially more challenging when those around me just don't get how wrong I feel at times in my body and mind. (((hugs))) if you'll accept them.
posted by stormyteal at 2:51 AM on March 3, 2021 [3 favorites]

Response by poster: Thank you, thank you, thank you! I have answered all as a best answer because each person has given me concrete phrases to use and/or good food for thought.
posted by peepofgold at 12:04 PM on March 3, 2021 [2 favorites]

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