“you’d never know”

I have a good life. I share it with a loving, supportive partner and three great dogs. I live in a beautiful part of the world, and I get to enjoy this beauty every day. My work is creative, meaningful and rewarding. I feel grateful for the way I’m able to live, and for the many fortunate circumstances that make my life a happy one. I’m also someone who, as a fairly young woman, had a stroke and who now lives in a disabled body, managing the numerous physical and neurological sequelae of serious brain injury. Upon meeting me, individual reactions to this last fact can be very strange, quite surprising, and occasionally somewhat hurtful. I’m writing this post today because I have become very tired of encountering a particular remark that’s routinely said to me in response to my stroke: a remark I find truly bizarre, and which is yet probably the most common stroke-related thing I hear from other people – “you’d never know”

“You’d never know you’d had a stroke” is something that countless people say to me upon meeting me for the first time, in many different situations, from casual dog-walking encounters to business policy meetings. Surprisingly, it’s very commonly said to me in healthcare settings, and perhaps equally surprisingly, women say it much more to me than men. Perhaps men have learned to be a little more self-policing when it comes to passing comments about women’s appearances to their faces – who knows? But interestingly, I’ve never been told “you’d never know” by a woman who is herself disabled or who has been through something comparably life-changing and body-altering. I think such women tend to understand how it feels to be on the receiving end of judgemental remarks about their disabled bodies.

I am sure that many of you reading this will feel that the intention behind the “you’d never know” remark is well-meaning or even complimentary. But I want to briefly explain why I find this remark upsetting and offensive and why – if you ever feel the inclination – you should probably think twice about saying it.

1. It’s a statement that minimises my experience

When someone tells me they’d “never know” I’d had a stroke I immediately want to tell them that that’s great, I’m so pleased for you! Because I certainly sometimes wish that I could “never know” I”d had a stroke, but unfortunately I do know, and I carry that knowledge around with me every day. My stroke is always present to me – it is a routine fact of me simply being in my body – whether you can see that or or not from looking at my face, or limbs, or judging the way I move or carry myself, is actually completely unimportant.

2. It’s a statement which says everything about someone else’s discomfort and nothing about me

When people tell me that “they’d never know” I’d had a stroke, I imagine they are somehow trying to say something kind or flattering in response to information about my body and brain that they find, for whatever reason, uncomfortable. But why should their discomfort be more important than my lived experience? What I most often hear in that phrase is someone’s rather clumsy attempt to squirrel their own discomfort away, and close a difficult topic down, by saying something that they perhaps assume will be taken as a compliment. “What? Really? You’ve had a stroke? Wow, well! You’d never know.” When I’m on the receiving end of such remarks, I often want to reply ironically that I am so sorry my stroke makes them feel a bit uncomfortable; that it feels really good to have my physical appearance judged by them, and that I’m so pleased to have successfully met their exacting criteria of what looking normal means. Because when someone says “you’d never know you’d had a stroke” they aren’t actually seeing me. They have simply seen their own version of normality and decided to judge me and my body against it.

3. It’s a horribly ableist statement

Just step back and really think for a moment what it means to tell me “you’d never know” I had a stroke. Because you are – right there to my face – letting me know that you have decided to assess my physical appearance against your own completely arbitrary criteria of how “normal” bodies should behave and look. And I passed the test! My body has not been found wanting! Congratulations to me on appearing – to you – completely normal! When someone says “you’d never know” I really want to ask them – well, how did you expect me to look? Would you assume my speech to be more slurred, my face to be more dropped, my body to be more wonky than it is, my limp to be just a little more pronounced? And if I were a little “more disabled” would I then also be a little “less normal?” What would you say in similar circumstances to someone who does (from your judgmental perspective) look like they’d had a stroke. Would you commiserate them on their lopsided appearance and visible disabilities in exactly the same way you congratulated my body for it’s apparent lack of such things?

All three aspects of the “you’d never know” remark bother me, but this third point is the one that I honestly find the most upsetting and offensive. Because in telling me you’d never know I’d had a stroke, you are also telling me I’m somehow really lucky to not look disabled. Please imagine how that feels, as a disabled person. So to every judgmental, ignorant, well-meaning able bodied person who has ever made this offensive remark to me, I would like to remind you that all disabled bodies are completely normal, and completely beautiful in their many differences, whether you choose to see such differences or not.