On being disabled enough
Feb. 18th, 2015 08:40 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
cosmolinguistI started to write this in reply to ![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
momentsmusicaux's comment in my last entry, but it just ballooned to such a size that it seemed unfair to saddle a poor little comment with a response like this. Anyway I thought there was some good stuff in it, so I could just about justify dragging it into its own entry. It meant I could add a lot more too, of course!
The comment I'm replying to says, "I think it's fairly common for people with a disability to feel they're some sort of fraud because they're not as disabled as other people."
So I say:
Yes, it's a kind of impostor syndrome I'm familiar with in multiple circles, thanks to my activism: as well as disability, it's common to hear people who think they might be bi fret that they're not "bi enough," if they don't have crushes/a relationship history split exactly evenly among the more popular genders.
I'm generally prone to impostor-syndrome-like failings anyway for a number of reasons, but the disability thing is complicated a little by how invested I was as a child and teenager in fitting in completely, in seeming exactly like all my sighted peers. I resented some adjustments and special treatment because I didn't want to be disabled (complicated further by the fact that I also resisted some unhelpful or unnecessary ones foisted on me by well-meaning people (ie, my parents, my teachers, my caseworker and specialists in various things, and certainly doctors) who had no idea of what I actually could benefit from because none of them listened to or believed me when I told them anything about what I could or couldn't see, what was easy or hard, etc.
So, constantly reinforcing "I'm hardly even disabled or maybe I'm not at all!" messages seemed preferable to me in every way: it fed my childish desires for acceptance via conformity, it allowed me to rebel in tiny ways against all the adult authority figures in my life, it reaffirmed my idea of myself, based on my early academic success, as a capable and successful person in ways that I was -- however wrongly -- convinced at the time that a disabled person couldn't be.
I grew up immersed in a lot of ableist thinking. I was blind when I was born and the fact that I've been able to see since I was very small was of course held up as a miracle, an unalloyed good... and "being less disabled is better than being more disabled" isn't far from "less disabled people are better than more disabled people," with of course non-disabled people being the best of all...
It took me until my late 20s, when I was diagnosed with anxiety and panic attacks for unrelated reasons, to realize how much anxiety my attempts at seeming normally-sighted were causing me. My hesitancy to say "which gate is the flight to Minneapolis?" or "what veggie options do you have on your illegible menu?" or "I won't watch subtitled anime" or "it's no good telling me 'you can't miss it' because I'll still get lost" let to all kinds of stress and misery that I now realize was perfectly avoidable, but until I'd had anxiety singled out and identified as a pathology, struggling in such situations was just normal to me. I'd never considered that there could be any other -- much less better way to cope than stoically muddling through. I still see my mental and physical health issues as being irrevocably entangled and I still haven't quite forgiven young-me and all the adults around me for making/letting me become so warped by a disabling society that I shredded my own mental health as well.
It's entirely possible I have predilections to anxiety or panic attacks that would've manifested anyway, but even so, the decades of holding myself to literally unattainable standards and berating myself for only living up to them 99% of the time -- because I did have a very high success rate for most of my life (and I still can't tell if there's objective deterioration in my eyes now or I'm just more at ease with seeking and accepting a level of help I'd have always benefited from) -- can't have been good for me.
Having been told by both the first optician I ever saw in the UK and the DWP that I have no difficulty seeing really set me back. I know the DWP will deny anything's wrong with anyone but I was still surprised how much it affected me to see that on the letter; I remember it still, I could tell you exactly what it looked like and where I was standing when I read it, four years ago. (I still don't understand that first optician I saw; the one I've been to since didn't offer even the slightest hesitation or challenge when I said I wanted an eye hospital referral to get myself registered blind.) So the tables have been reversed on me: part of "the system" since birth in the U.S., I wanted out. Being "off the grid" since I moved to the UK, I want back in. And I do have small, probably irrational concerns that I'm still "not disabled enough."
momentsmusicaux's comment in my last entry, but it just ballooned to such a size that it seemed unfair to saddle a poor little comment with a response like this. Anyway I thought there was some good stuff in it, so I could just about justify dragging it into its own entry. It meant I could add a lot more too, of course!The comment I'm replying to says, "I think it's fairly common for people with a disability to feel they're some sort of fraud because they're not as disabled as other people."
So I say:
Yes, it's a kind of impostor syndrome I'm familiar with in multiple circles, thanks to my activism: as well as disability, it's common to hear people who think they might be bi fret that they're not "bi enough," if they don't have crushes/a relationship history split exactly evenly among the more popular genders.
I'm generally prone to impostor-syndrome-like failings anyway for a number of reasons, but the disability thing is complicated a little by how invested I was as a child and teenager in fitting in completely, in seeming exactly like all my sighted peers. I resented some adjustments and special treatment because I didn't want to be disabled (complicated further by the fact that I also resisted some unhelpful or unnecessary ones foisted on me by well-meaning people (ie, my parents, my teachers, my caseworker and specialists in various things, and certainly doctors) who had no idea of what I actually could benefit from because none of them listened to or believed me when I told them anything about what I could or couldn't see, what was easy or hard, etc.
So, constantly reinforcing "I'm hardly even disabled or maybe I'm not at all!" messages seemed preferable to me in every way: it fed my childish desires for acceptance via conformity, it allowed me to rebel in tiny ways against all the adult authority figures in my life, it reaffirmed my idea of myself, based on my early academic success, as a capable and successful person in ways that I was -- however wrongly -- convinced at the time that a disabled person couldn't be.
I grew up immersed in a lot of ableist thinking. I was blind when I was born and the fact that I've been able to see since I was very small was of course held up as a miracle, an unalloyed good... and "being less disabled is better than being more disabled" isn't far from "less disabled people are better than more disabled people," with of course non-disabled people being the best of all...
It took me until my late 20s, when I was diagnosed with anxiety and panic attacks for unrelated reasons, to realize how much anxiety my attempts at seeming normally-sighted were causing me. My hesitancy to say "which gate is the flight to Minneapolis?" or "what veggie options do you have on your illegible menu?" or "I won't watch subtitled anime" or "it's no good telling me 'you can't miss it' because I'll still get lost" let to all kinds of stress and misery that I now realize was perfectly avoidable, but until I'd had anxiety singled out and identified as a pathology, struggling in such situations was just normal to me. I'd never considered that there could be any other -- much less better way to cope than stoically muddling through. I still see my mental and physical health issues as being irrevocably entangled and I still haven't quite forgiven young-me and all the adults around me for making/letting me become so warped by a disabling society that I shredded my own mental health as well.
It's entirely possible I have predilections to anxiety or panic attacks that would've manifested anyway, but even so, the decades of holding myself to literally unattainable standards and berating myself for only living up to them 99% of the time -- because I did have a very high success rate for most of my life (and I still can't tell if there's objective deterioration in my eyes now or I'm just more at ease with seeking and accepting a level of help I'd have always benefited from) -- can't have been good for me.
Having been told by both the first optician I ever saw in the UK and the DWP that I have no difficulty seeing really set me back. I know the DWP will deny anything's wrong with anyone but I was still surprised how much it affected me to see that on the letter; I remember it still, I could tell you exactly what it looked like and where I was standing when I read it, four years ago. (I still don't understand that first optician I saw; the one I've been to since didn't offer even the slightest hesitation or challenge when I said I wanted an eye hospital referral to get myself registered blind.) So the tables have been reversed on me: part of "the system" since birth in the U.S., I wanted out. Being "off the grid" since I moved to the UK, I want back in. And I do have small, probably irrational concerns that I'm still "not disabled enough."
(no subject)
Date: 2015-02-18 11:45 pm (UTC)I have severe myopia (and related issues) and it wasn't discovered (and addressed) until I was 3 and I can relate to so much you wrote, including growing the courage of 'coming out' with a visual impairment even though, yes, there are visually impaired people far worse off than me. That, however, does not negate my struggles with my sight and the impediments and barriers it has put in place. And like you, telling me 'you can't miss it' is a surefire way to make sure I do :) Thanks for sharing - I might actually share my own story on my DW at some point.
Hugs.
(no subject)
Date: 2015-02-19 12:03 am (UTC)The DWP is the Department of Work and Pensions, the part of the government that also deals with benefits... in this case disability benefit to which I should've been -- should be -- entitled according to their own criteria, but instead I was told "you have no difficulty seeing."
(no subject)
Date: 2015-02-23 09:03 am (UTC)(no subject)
Date: 2015-02-19 12:35 am (UTC)Just by coincidence I had my first trip into town in the wheelchair today, which necessarily included a couple of cases of standing up out of the wheelchair and tugging it up the step into the shop/pushing it up the hill when my shoulders gave out. I'd been worried that I'd feel worried about people thinking I didn't need it when I had to stand up (meta-anxiety, yay me), which of course is a perfect prompt for impostor syndrome all of your very own, but in the end I was so annoyed at the state of the footpaths that it never occurred to me. Give it time...
And yeah, damaged by DWP, been there, still doing that.
I think most of us probably experience at least a touch of impostor syndrome, especially if we've got a disability that's progressing by subtle degrees or not easily quantifiable, but at least in part that's due to the screwed up view of disability our society has, that regards it with suspicion more easily than with trust and 'how can we make this easier?"
(no subject)
Date: 2015-02-19 09:52 am (UTC)I've been reading your updates about your chair with interest, but haven't had a lot of spoons for commenting. A dear friend of mine is a sometime wheelchair user and from going out with her I've seen regarding the horrendous state of pavements, the way the wheelchair makes both her and me-if-I'm-standing-sufficiently-close invisible, the surliness of people asked to move their cars away from the dropped curbs...I have such admiration for people who can navigate this kind of world without throttling anyone. :)
(no subject)
Date: 2015-02-20 01:40 am (UTC)BTDT, when I first realised I'd probably be better off with a stick, I bought a folding one, which lived unused in my rucksack for a few weeks, and when I finally did start to use it on the walk home, I'd wait until I was around the corner from the office. It can take a bit of working up to, but you don't have to do it all in one go.
I'm not normally vindictive, but if someone who is ignoring me happens to solidly thwack their shin into my crutch, then that seems only fair. Or as a disabled friend puts it 'what's the point of having sticks if you can't use them to crack ankles' (and she seems so sweet and innocent...)
I know I'm inevitably going to encounter idiocy on top of all the problems with the built environment. The first time I ever used a borrowed wheelchair (early-2000s), a former mayor of Rochester stopped to chat with the friend I was with, and patted me on the head. I had no words... (Nowadays I suspect he'd be lucky to get it back as a bleeding stump!)
From Andrew (DW's openID still borked)
Date: 2015-02-19 01:03 am (UTC)Re: From Andrew (DW's openID still borked)
Date: 2015-02-19 08:53 am (UTC)Certainly I don't think you could have married many people who, when you asked them what eye contact really is, were so unable to give a satisfactory answer that you had to look it up on Wikipedia. :) Failing at eye contact, difficulty interpreting facial expressions, anxiety with new places and things people insist are no big deal, benefiting from things being expected and routine...these are all traits we both share.
(no subject)
Date: 2015-02-20 02:34 pm (UTC)