I‘ve encountered plenty of ableism in my time as disabled, but one of the most uncomfortable experiences still sits with me today:
This was when I was still able to go outside. We had just gotten back from a clinic visit where I get my IVs and the parking space outside our apartment was occupied, so we parked further away. I had my crutch and I started walking towards our apartment, but my energy was waning. I couldn’t walk ‘normally’ anymore, I was wabbling and dragging my feet along the ground and my mom was too far ahead of me to see me struggle — and I hadn’t learnt to ask for help at this stage.
Construction workers were hammering away on the opposite side of the street and one of them yelled: “Walk properly why don’t you!” I was hurting, panicking and needing help and that’s what I got? Some asshole yelling at me to walk normally!?
As I hadn’t been disabled for that long I had not developed the armour needed for these kinds of situations and I didn’t have any experience with this. So I wabbled on, and I felt shamed and angry.
Honestly, I often fantasise about having had the energy (and wits) to go up to him and ask why he felt it was necessary to say something so hurtful when I actually needed help. And just tell him, calmly, how it made me feel (unsafe, sad, shamed).
What experiences have you had with ableism, either direct or witnessed, and how did you respond — or wished you responded?
I’m sorry you’ve had these experiences and so many of them that you are sharing.
It’s an odd one with help - so many of us unable to ask for it (tough lesson for me to learn).
it’s belittled and made out to be a weakness (when it’s possibly the greatest strength we will ever find our selves to have, particularly given what’s going on globally as well as individual and within the community).
I tuned into a perimenopause/menopause topic specifically centring around chronic ill health last night. Hope to share a piece on it at some point. Both women were clinically trained, thought they were well prepared for menopause and both wound up chronically ill instead. It’s a great topic with lots of insight to share.
The one thing that stood out to me though was how ableist they said they both came to discover they were and how much stigma and shame and embarrassment they had of their own illness. They didn’t want anyone to find out etc.
I don’t know about my own experience - only that I never told anyone for 20 years (except what I thought you were supposed to do and reported it to the doctors which I did many times).
So I don’t know what part shame and embarrassment played. I was so numbed out from drink, drugs, tv, sex, work, shopping etc (until that no longer worked). I must have had a lot going on there. Then once I couldn’t hide it anymore, something changed. People knew. But the misunderstanding, judgements and opinions became clear. So I had to take back my own power which was very difficult to go against so many. But waking up to newfound beliefs “I matter. My health matters” helped enormously. Because I no longer saw anyone being right over me as I always had done. Before that I saw everyone else as right and me as wrong.
Thank you so much for your reflections, Amber 🌸 Aah, internalised ableism! I am still working in that to be honest. I too didn’t disclose my illness as I was embarassed and ashamed, especially being in the yoga community where health is the ideal.
Ableism is a big one for me (like privilege), I want to be able to write more about it but I haven’t processed it fully myself yet.
I’ve done similar with trauma though. We mainly talk about childhood trauma (sometimes ancestral and past life trauma).
But we definitely don’t talk about self-inflicted trauma, what about the trauma we impose on ourselves?
A deeply uncomfortable one for me to sit with last year. But I think I am starting to bring it back to myself in this way more.
It was a big insight I had in to dismissal earlier this year too. An entire community of fellow chronic illness warriors on Instagram - in their thousands. Slating all those in recovery. Saying they couldn’t have been that ill, their symptoms must have been few.
Seeing the dismissal magnified in that way made me realise ‘woah, this goes way beyond the medical field - we’re doing it to each other!”
And something clicked, and I realised all those 20 years I’d done it to myself🥹🥲
You’re so right — self-inflicted trauma is real and I deal with this a lot too. It’s difficult because how do we place blame without shaming ourselves. Also, YES! There is sooo much ableism within our own communities, it’s exhausting. I’ve seen several of the ‘they couldn’t have been that ill’ comments around, too, and I don’t like them.
What a horrible thing to say to someone!!! I suppose I am 'lucky' so far to have not received any ableist comments, or at least nothing I have seen as that, but I am new to the disability scene, and have only in the last year taken to a stick, and most recently a rollator walker, I guess I have it all to come... sigh!!
It’s so hard in the moment - and I’m sorry you were treated that way! I’ve had similar experiences when using mobility aids. I often use a wheelchair in airports (or I did when I was still well enough to travel)… and when I would stand up to board I would get the dirtiest looks and comments.
People really do NOT understand dynamic disability. I generally never said anything - though I did tell one person that the wheelchair ensures I conserve energy and avoid injuries so that I can safely get through the flight. That if I push myself before boarding - I often end up in hospital.
I don’t know if it changed how they thought about things - but I hope it did.
Argh that one’s a classic. I’ve tried it too several times when I too could still travel. In the end I just didn’t get out of the wheelchair. And way to go on educating that person — I’m sure it made a difference 🌸
I’m so sorry you had to deal with such rudeness from those construction workers! That’s awful!
I haven’t had too many ableist experiences, thank goodness, but my entire adult life I’ve been told I am intense and somewhat intimidating so maybe that’s why?
I do experience a lot of assumptions being made when I’m in my transport chair though, and have had people talk to my husband instead of me because I’m in the chair. In medical settings people assume I have MS (which is very common where I live) and often move to help me transition from chair to bed. I always explain that the chair is because of fatigue, not balance issues, and they seem to accept that explanation.
Firstly, Madelleine thank you for the Bed Perspective: it’s been really helpful to me, I have finally set up a Substack to be able to comment, but I’ve been quietly appreciating it and you. Thinking about ableist experiences, I reflect from crossing the border constantly back and forth between visible and invisible disability. I’m surprisingly not upset by being the target of minor ‘clunky’ ableist comments of the ‘have you got a license for that’ kind - I’m NOT saying we can’t do better, but for myself I realise that I just tend to respond to them as badly informed or executed attempts to human. And my response to clunky humaning is defaulting to trying to see the intent behind, trying to see the good. It’s different when the intent is malicious or othering - and we can tell the difference, can’t we? One of the most horrible experiences I’ve had on the street in my wheelchair looked really innocuous but involved being yelled at suddenly and as though I was an amusing poodle. It wasn’t the words, it was the blithe intrusion on my privacy, and the utter failure to recognise my humanity or dignity - simply because of my wheelchair. Those encounters stick in like barbs and are so hard to dislodge.
I so hear you re the difference between clumsy attempts at connection/humanand outright ableism. I really appreciate what you said about ‘blithe intrusion of my privacy’, and the ‘utter failure to recognise my humanity’ — this is exactly how I felt when that construction worker yelled at me. And yes, those encounters are hard to dislodge.
I'm sorry that you had these experiences! Often it's impossible to answer in the moment, especially when,.as you describe, you were already in a very vulnerable state.
As I was reading your story and then some of the comments to it, two things came to mind: 1. As a fellow chronically ill person, I never stopped masking and people (especially men) so often feel that it's their right to comment on my wearing a mask 😷 The tone is usually either somewhat hostile or condescending. People stare at me like an alien, like they've all forgotten how not too long ago, everyone wore masks to keep the spread of Covid-19 in check. Instead of responding, I'm often too stunned or confused.
2. Internalized ableism rears its ugly head, too. My brain fog keeps me from remembering a concrete example, but once I became more aware of it, it was easier to show myself some grace and work on unlearning it myself.
I’m sorry you’ve had these experiences and so many of them that you are sharing.
It’s an odd one with help - so many of us unable to ask for it (tough lesson for me to learn).
it’s belittled and made out to be a weakness (when it’s possibly the greatest strength we will ever find our selves to have, particularly given what’s going on globally as well as individual and within the community).
I tuned into a perimenopause/menopause topic specifically centring around chronic ill health last night. Hope to share a piece on it at some point. Both women were clinically trained, thought they were well prepared for menopause and both wound up chronically ill instead. It’s a great topic with lots of insight to share.
The one thing that stood out to me though was how ableist they said they both came to discover they were and how much stigma and shame and embarrassment they had of their own illness. They didn’t want anyone to find out etc.
I don’t know about my own experience - only that I never told anyone for 20 years (except what I thought you were supposed to do and reported it to the doctors which I did many times).
So I don’t know what part shame and embarrassment played. I was so numbed out from drink, drugs, tv, sex, work, shopping etc (until that no longer worked). I must have had a lot going on there. Then once I couldn’t hide it anymore, something changed. People knew. But the misunderstanding, judgements and opinions became clear. So I had to take back my own power which was very difficult to go against so many. But waking up to newfound beliefs “I matter. My health matters” helped enormously. Because I no longer saw anyone being right over me as I always had done. Before that I saw everyone else as right and me as wrong.
Lots to muse on here☺️
Thank you so much for your reflections, Amber 🌸 Aah, internalised ableism! I am still working in that to be honest. I too didn’t disclose my illness as I was embarassed and ashamed, especially being in the yoga community where health is the ideal.
Ableism is a big one for me (like privilege), I want to be able to write more about it but I haven’t processed it fully myself yet.
I’ve done similar with trauma though. We mainly talk about childhood trauma (sometimes ancestral and past life trauma).
But we definitely don’t talk about self-inflicted trauma, what about the trauma we impose on ourselves?
A deeply uncomfortable one for me to sit with last year. But I think I am starting to bring it back to myself in this way more.
It was a big insight I had in to dismissal earlier this year too. An entire community of fellow chronic illness warriors on Instagram - in their thousands. Slating all those in recovery. Saying they couldn’t have been that ill, their symptoms must have been few.
Seeing the dismissal magnified in that way made me realise ‘woah, this goes way beyond the medical field - we’re doing it to each other!”
And something clicked, and I realised all those 20 years I’d done it to myself🥹🥲
You’re so right — self-inflicted trauma is real and I deal with this a lot too. It’s difficult because how do we place blame without shaming ourselves. Also, YES! There is sooo much ableism within our own communities, it’s exhausting. I’ve seen several of the ‘they couldn’t have been that ill’ comments around, too, and I don’t like them.
For me, blame is so culturally ingrained in our society, it’s a deep layer of healing all on its own.
“Where there’s blame there’s a claim”
Is really “where there’s blame, there’s control”
Control only exists where there is blame.
Control is but an illusion. What’s really going on is there is disconnect from creativity.
We don’t take blame of our ill health, we take responsibility for it.
We don’t control ill health, we create it.
If we create ill health, we can create our way of it.
We can blame all we want, but this takes away our agency.
The power is within us.
What a horrible thing to say to someone!!! I suppose I am 'lucky' so far to have not received any ableist comments, or at least nothing I have seen as that, but I am new to the disability scene, and have only in the last year taken to a stick, and most recently a rollator walker, I guess I have it all to come... sigh!!
I’m glad to hear you haven’t experienced anything like this, let’s hope it stays that way!
It’s so hard in the moment - and I’m sorry you were treated that way! I’ve had similar experiences when using mobility aids. I often use a wheelchair in airports (or I did when I was still well enough to travel)… and when I would stand up to board I would get the dirtiest looks and comments.
People really do NOT understand dynamic disability. I generally never said anything - though I did tell one person that the wheelchair ensures I conserve energy and avoid injuries so that I can safely get through the flight. That if I push myself before boarding - I often end up in hospital.
I don’t know if it changed how they thought about things - but I hope it did.
Argh that one’s a classic. I’ve tried it too several times when I too could still travel. In the end I just didn’t get out of the wheelchair. And way to go on educating that person — I’m sure it made a difference 🌸
I’m so sorry you had to deal with such rudeness from those construction workers! That’s awful!
I haven’t had too many ableist experiences, thank goodness, but my entire adult life I’ve been told I am intense and somewhat intimidating so maybe that’s why?
I do experience a lot of assumptions being made when I’m in my transport chair though, and have had people talk to my husband instead of me because I’m in the chair. In medical settings people assume I have MS (which is very common where I live) and often move to help me transition from chair to bed. I always explain that the chair is because of fatigue, not balance issues, and they seem to accept that explanation.
I’ve been told I’m intense and intimidating too… I think it’s a common thing for insightful women.
Firstly, Madelleine thank you for the Bed Perspective: it’s been really helpful to me, I have finally set up a Substack to be able to comment, but I’ve been quietly appreciating it and you. Thinking about ableist experiences, I reflect from crossing the border constantly back and forth between visible and invisible disability. I’m surprisingly not upset by being the target of minor ‘clunky’ ableist comments of the ‘have you got a license for that’ kind - I’m NOT saying we can’t do better, but for myself I realise that I just tend to respond to them as badly informed or executed attempts to human. And my response to clunky humaning is defaulting to trying to see the intent behind, trying to see the good. It’s different when the intent is malicious or othering - and we can tell the difference, can’t we? One of the most horrible experiences I’ve had on the street in my wheelchair looked really innocuous but involved being yelled at suddenly and as though I was an amusing poodle. It wasn’t the words, it was the blithe intrusion on my privacy, and the utter failure to recognise my humanity or dignity - simply because of my wheelchair. Those encounters stick in like barbs and are so hard to dislodge.
I so hear you re the difference between clumsy attempts at connection/humanand outright ableism. I really appreciate what you said about ‘blithe intrusion of my privacy’, and the ‘utter failure to recognise my humanity’ — this is exactly how I felt when that construction worker yelled at me. And yes, those encounters are hard to dislodge.
I'm sorry that you had these experiences! Often it's impossible to answer in the moment, especially when,.as you describe, you were already in a very vulnerable state.
As I was reading your story and then some of the comments to it, two things came to mind: 1. As a fellow chronically ill person, I never stopped masking and people (especially men) so often feel that it's their right to comment on my wearing a mask 😷 The tone is usually either somewhat hostile or condescending. People stare at me like an alien, like they've all forgotten how not too long ago, everyone wore masks to keep the spread of Covid-19 in check. Instead of responding, I'm often too stunned or confused.
2. Internalized ableism rears its ugly head, too. My brain fog keeps me from remembering a concrete example, but once I became more aware of it, it was easier to show myself some grace and work on unlearning it myself.
Thank you so much for sharing, Yvonne! Masking comes with soo much ableism, it’s frightening.
And so many people assume that I have Covid because I wear a mask. While they're not even thinking about masking up 🤦🏻