I’d been diagnosed with my first chronic illness for a good ten years before I took the label on. This was partly because I didn’t make a connection between chronic illnesses and disability. That’s an experience I share with a lot of “invisibly” disabled people. Disability is all deafness and wheelchairs and that sort of thing, right? Not so much. I also didn’t take on the label for so long partly because I didn’t experience my condition as disabling for most of that time. A bit annoying, sure, but it wasn’t that bad until a patch about four years ago, and then it increased last year, and then my health got shot all to hell again this year. It’s only been in the past couple of years I’ve been able to approach myself as disabled.
So what changed? To gain access to some services, I had to fill in some forms marked “disability”. That was cool, I could handle being lumped in with disabled people, oh wait maybe that means this qualifies as a disability, oh no I’m one of them, stop being a bigot they’re disabled not monsters from the black lagoon – hey. Maybe I am disabled. Maybe that describes what I’m going through. Maybe this will allow me to explore opportunities and internal spaces I’ve been shutting off. And that’s okay.
Before I got there, I had to overcome a few things. As any “invisibly” disabled woman will know, there’s an idea of the “whiny woman” in your way. The “whiny woman” is that silly broad who always complains about her aches and pains, but who we all know is just looking for attention. The idea of this imaginary woman is put on to us, used to delegitimise our voices, our experiences, our pain. When I ask for disability-related help, I am keenly aware that whoever I am asking may well be thinking of me as a fluttering fusspot, not a person with needs. I did not want to be that whining woman, I did not want to make a fuss. And isn’t that just typical? Women are so often told, implicitly or explicitly, that we shouldn’t draw attention to ourselves but should go about things quietly, carry on, don’t demand anything for yourself. This is, of course, on top of the disability stigma: disabled people are subhuman, better off dead, unlovable, disgusting. Which hasn’t been the case for a single PWD I’ve met, or anyone, in fact. It’s nasty lies, it’s some people’s horrible perceptions.
I came through all that and accepted what I’d always known, always thought about other PWD but couldn’t yet apply to myself: those things aren’t true, we are all wonderful people deserving of life and love and whatever we want for ourselves. And when I finally took on the disability label, it was a relief. Here were a term and history I could apply to my experience. It was liberating.
I came to realise that nobody could force that identity on or away from me. No matter what anyone else thinks, whether they see me as disabled, whether they think I’ve been faking the whole time, this is my label to claim or discard as it suits me. If, one day, I find an identity of ‘disabled’ no longer suits me, no longer applies to my experience, I can let it go.
How do you relate to the label of ‘disabled’? Did you grab it with pride, wear it with shame, are you considering claiming it, do you reject it for yourself?
Thanks for this post, and for FWD in general. I’m learning a lot from what y’all write, including beginning to think about whether or not to claim the label ‘disabled’ for myself. My disabilities are (mostly) invisible, and I’m fortunate to work in a profession that is flexible enough that I have not (yet) had to file for ADA accommodation* for my workplace to adapt to my needs.
I’m using a pseudonym today because I have not yet claimed the label.
*For the benefit of those outside the US, ADA is Americans with Disabilities Act, a federal law that requires, among other things, that workplaces provide reasonable accommodations to employees who are otherwise capable of doing the job.
I can relate to a lot of this, and I’m only just (and very cautiously) starting to use the label. One of the reasons I didn’t for a long time was that, like the OP, I didn’t feel I was being disabled. I actually was, but because I’d independently (and often subconsciously) worked out so many coping strategies to enable me to do more or less what other people could, I only looked at that end result, and not how much effort and energy it was taking me to get there.
One of a series of revelations came in uni when a friend and I were looking at exam papers, and I realised that despite getting the same grade, I’d written less than a quarter of the amount she had. I asked other people and found the same pattern. I’d learned to adapt to handwriting being slow, painful and difficult by writing extremely concisely, and because that enabled me to pass exams I’d ignored the pain and effort that went in to doing so.
.-= anthea´s last blog ..Work and flexibility =-.
The “whiny woman” is that silly broad who always complains about her aches and pains, but who we all know is just looking for attention.
Working in pharmacy has taught me how false this character is – not just that women’s actual aches and pains are being dismissed, but that sometimes people just want to talk because their pain may not be physical, but it doesn’t make it less real. (I also experienced this personally when I turned out to not have depression and possible chronic fatigue, but actual, measurable cancer, and suddenly everyone who had been eyerolling and asking when I’d get better was sympathetic and helpful.) Fortunately, I work in a small, rural pharmacy, where it is possible to take the time to talk to a person at some length – I don’t know how I’d try to balance “caring” with “a huge queue of equally needy people” in the city.
I do not identify as “disabled” for the same reason I do not identify as “queer”. In the case of being disabled, I have been on disability* and regularly miss work for medical appointments, testing, etc. I am on regular medication and have a variety of “specialists”.
I generally identify as heterosexual since I am a cis-gendered womyn dating a cis-gendered straight man. However I have had sexual experiences w/ people who are not cis-gendered men and am always open to relationships with “people” regardless of gender/sex.
However, in both cases, I enjoy privilege as being seen as “able bodied” and “straight” and so I feel like my experience/life does not reflect the reality of so many disabled / queer womyn. My reality is so white, able-bodied, straight, educated, etc. that I feel like I’m co-opting something that does not belong to me.
I have been told that to adopt either label is a powerful act because it dispels the myths of what disabled / queer womyn SHOULD look like, live like, love like, etc. But I just feel like I’m using my privilege to steal someone’s title.
I dunno… that’s where I am today; might not be where I am tomorrow.
*I’m not sure how things work in other countries, but in Canada, there is a type of Unemployment Insurance that you can get if you qualify as “disabled”. This can also include being “sick” which is where my dilemma comes in. I don’t feel disabled; I feel sick. Are they one and the same at times? I don’t know. I really don’t.
.-= Simplejewel´s last blog ..Snot Rags and Stereotypes =-.
simplejewel… I felt the same way for a long time. For those of us who do accept the label, it’s a process, and it can take years. We didn’t all identify as disabled for all of our lives, or even all of our sick/disabled/medically-affected lives.
That does NOT mean that therefore, you will someday identify as disabled too. Because not everyone does. But don’t mistake some of our projected confidence to mean we’ve always been this way… it’s hard to get here, really, and hard to stay here too. But that’s why we’re doing the work we’re doing…
Still working on it – I’ve gotten through the initial revulsion and fear of seeing myself as disabled. Now I’m still in the transitory period of situating myself in the context of being disabled. But I’ve definitely shifted from knowing I have a disabling condition to being disabled by the condition. And that was a relief. I’m not waiting on the shoe to drop anymore.
I do sometimes worry about seeming “high-maintenance.” But I remind myself that people make all kinds of inferences and assumptions about others based on only a very incomplete glimpse, and also that others aren’t thinking about me as much as I think about me. They’re getting though their own days, worrying about how they appear to others. I have to give myself the occasional reminder to get over myself.
I’m struggling with whether or not to call myself disabled… On one hand, I’m quite largely abled. My body works just fine; my mind isn’t fine, though. But is my mental disorder enough to qualify as disabled? That’s what I’m trying to work out. I have Panic Disorder, and I may have some other mental disorders that are as of yet undiagnosed (it would seem likely), but I’m trying to decide if it’s actually disabling. I’ve never had too many problems with it stopping me from doing what I want and need to do. My agoraphobic tendencies aren’t severe enough to actually keep me confined to my home, and my panic attacks are absolutely hellish, but I can “appear” totally fine even in the throes of a severe attack.
But despite that, it DOES make me have to work harder than any “abled” person in order to function. Abled people don’t have to struggle with staying in their desk when all they want to do is flee out the door. Abled people don’t have to struggle to tune out dizziness, nausea, lightheadedness, and terror while taking math tests (well, maybe terror). It doesn’t make me incapable of doing things, but it makes me have to try far harder to do them.
Does that make me disabled? I don’t know.
I am considering the label. Conceptualizing my mental illness as a disability (rather than a sickness or a moral failing or an “it’s-nothing-really”) radically altered…well, everything, and it has really helped things. I am headed towards something like abby jean’s “Why I Identify As Disabled”.
And yet the internal voice saying “You’re not disabled ENOUGH!” or “You call THAT a disability?” doesn’t really shut up. I know objectively that’s not a useful way of thinking but it takes time to really believe it—and then develop pride.
I am ‘out and proud’ when it comes to disability. I hope that the way I live my life metaphorically shouts YES, I’M DISABLED! as much as I can. I believe that if we don’t claim these terms with pride, we will never be a community. Within the context of the social model of disability, to be disabled is to be oppressed. Protesting that oppression by naming it is one important way of deconstructing it.
Wishing you happy, or at least proud, experiences of being disabled, all.
lilwatchergirl (aka Seska)
.-= Naomi (lilwatchergirl)´s last blog ..NaBloPoMo =-.
Just want to make a note regarding this post: because it concerns part of how I came into the disability identity, it describes attitudes I used to have. Like, ‘didn’t experience my condition as disabling’ would now be ‘didn’t experience the world around me as disabling’. (I’m *still* trying to move away from the medical model.) I didn’t make this clear in the post but I wanted to here.
Thank you for your comments, everyone.
It’s taken me a long time to take on the label of disabled, and I’m still exploring it a lot. I think the turning point for me was thinking about my friends who love to go out and get incredibly drunk, often to the point that they pass out or black out, or do various drugs – as an epileptic who cannot drink or do drugs, I couldn’t do such things if I wanted to, but honestly, I think it sounds more like something out of a horror movie than a way to have fun.
I spent so long agonizing over what was wrong with me that most people’s definition of ‘fun’ was my definition of ‘complete and utter terror’… but then I realized that the answer was really quite simple. Because of my epilepsy, I am at all times trying my hardest to stay conscious, keep control of my body, and remember what I do. My friends do for fun on Friday nights what I spend every waking moment trying not to do. No wonder I don’t think it sounds enjoyable!
So I guess what made me start to think of myself as disabled was the point where I saw that my disability wasn’t just a list of things I can’t do or have to do differently, but a part of me that actually influences my thoughts and views. I am still struggling with the “but I’m not disabled enough!” sentiment, and I don’t usually refer to myself as disabled except when chatting with my partner, probably because I feel awkward given that it’s an invisible disability…
Simplejewel wrote:
I enjoy privilege as being seen as “able bodied” and “straight” and so I feel like my experience/life does not reflect the reality of so many disabled / queer womyn. My reality is so white, able-bodied, straight, educated, etc. that I feel like I’m co-opting something that does not belong to me.
This is what I’m struggling with too, and was not able to articulate well in my first response. For me, it’s also mixed with the midwestern Protestant work ethic I was raised with; my disabilities are challenges I’m supposed to rise above, and keep personal issues private. As a feminist, I know the personal is political, but claiming disability feels a little like oversharing to me.
These are some of my issues.
Chally, that last comment is actually what really seals the deal for me. I have generalized anxiety disorder and chronic depression– I was diagnosed with depression seven years ago (shortly after my 13th birthday) and put on an SSRI that worked GREAT until I joined an extracurricular that majorly bunged up my sleep cycle, which brought the anxiety back with a vengeance, followed shortly by depression. I stayed in school through a major depressive episode last semester and came out doing reasonably well. With med adjustments and therapy I came out of the depression and managed the anxiety. I thought I was “fine” again. I wasn’t, and I’m not, and the anxiety is bad enough that I’ve had to drop a class because I’ve been having difficulty focusing and sleeping and blah blah blah…
So, am I disabled? I’m not sure. I definitely identify with a lot of what Moria says– I feel like I’m capable of doing what anyone else does; I just have to work harder. I have talked to the disability office on my campus in order to let my professors know, mostly because I’ve been having more and more trouble getting out of bed and to class on time, and I want my profs to know that I’m not late because I’m intentionally being disrespectful– I’m late because I physically can’t be on time.
But part of the reason I think I don’t accept the disability label– at least not now– is that I have to believe that this is temporary. Because if I don’t believe that I will get my anxiety & depression under control, the depression wins, and I won’t be able to get out of bed.
Disability is all deafness and wheelchairs and that sort of thing, right?
I think I am going to very gently suggest that it’s probably best not to make too many assumptions about what constitutes a visible vs invisible disability. Deafness in particular can rather spectacularly and disastrously combine both elements of being very visible and at the same time completely invisible, and as a profoundly deaf person who can nevertheless speak, I run into that fact often enough to find your above quote somewhat jarring.
(Not to mention that I don’t necessarily claim the label disabled for *myself* either, although I recognize that I’m shoved into this category willynilly because I can’t hear.)
And it’s not the case that tootling along in a wheelchair suddenly makes everyone instantly aware of, and appropriately accommodating towards, your disability.
It’s a curious thing about disability, that PWD can be as ableist as the abled are toward PWD who have different disabilities from themselves. I’ve had to do some work on my own part in this area.
I’ve been on SSI for about 8 years now, and using disability support services at school for 6, and even with that I don’t know when exactly I let myself identify with being disabled. I think it was two or three years ago. I felt so guilty for exploring the disability rights movement even, like I was claiming something I’m not, like I should only read if I firmly identify myself as an ally. But here and there I saw people with non-physical disabilities speaking up, and it really helped. I still have encountered spaces for disabled people that disinclude me; someone said in one forum that he didn’t think something like anxiety could “count” because a disability was something that was “always on”. I didn’t even know how to begin to address him. I think that can be one of the frustrating things about some disabilities like anxiety or depression – people think they understand because they feel anxious or sad once in a while (well, and I’m sure this extends to almost anything – people think they understand physical disabilities because of a temporary injury, etc etc). My friend was seeing a psychiatrist for evaluation, someone who had the power to deny my friend benefits, and the psych actually said “Well, I don’t like to use the phone sometimes either.” (Yeah? Do you have your medical benefits stopped because you are too scared to make a phone call?)
So I more or less identify as being disabled for my emotional stuff – dissociation and PTSD and depression – but I have been coming to terms with some of my physical stuff lately and it feels like I’m starting all over again. Like I must be faking. A phrase I heard somewhere haunts me – some “researcher” claiming that Fibromyalgia was just what most people dismiss as “normal aches and pains” – I know it’s BS but I can’t get the phrase out of my head. Take that together with how good I’ve been at dissociating pain, and I feel like an asshole for claiming anything, for not carrying heavy stuff for people. Especially since I can push through the pain if I need to (and do so frequently/constantly) – so the self-talk says that I must not really have anything wrong with me. If I really had fibro (which I was diagnosed with just last month, but you know, I could have been faking during the exam), then I wouldn’t physically be able to push myself up the stairs, or whatever. Doing so hurts but I can still *do* it. And it’s definitely true that a lot of people with fibro have a lot more barriers/pain than I do. So am I physically disabled, or not? And what about how the emotional disabilities interact with the physical? If I am hurting all over partly due to a hard session at therapy, or encountering a trigger, does that make it not physical or not fibro? What if I’m remembering something that hurt before and it contributes to the pain now? It’s so tangled.
(Sorry for being so long-winded and maybe overly specific. I really, really love this blog and have been challenging myself to comment here, but I have severe social anxiety, so it’s scary to participate and I generally feel I’ve been doing it wrong. If it is too long or anything, please let me know. And sorry if this disclaimer was what is wrong.)
.-= myriad´s last blog ..just low =-.
peanutbutter: Another attitude I no longer hold since coming into the disability community. I really should have made that explicit. Which is to say, I’m aware of that, and I’m sorry that my not having made this clear caused you discomfort. On a different note, and not to take away from what I’ve just said, but I don’t think I implied that ‘tootling along in a wheelchair suddenly makes everyone instantly aware of, and appropriately accommodating towards, your disability.’
myriad: You’ve done nothing wrong! Thank you for commenting.
No, to clarify I didn’t think you were going quite that direction with the wheelchairs. I was speaking more generally by that point, my apologies.
And yeah, deafness is a really weird one. Unless you try to communicate with a deaf person, you won’t know. We’re invisible up to that point. And it’s easy for alternate assumptions to be made instead. We’re rude. Antisocial. We’ve got it in for you. We have behavioral problems (do you know how many deaf people wound up in mental institutions back when institutionalization was the norm and even still today?). We’re ungrateful, nasty, don’t concentrate, don’t pay attention, ignore anything we’re not interested in, etc etc etc. (Or, we’re helpless, ignorant, childlike, vulnerable — a lot of this will be gendered, too.) Deaf people (particularly deaf men) for example, are frequently injured in confrontations with the police, who assume that the deaf person is defying them, not unable to hear & therefore cooperate, and get shot or tasered as a result.
One of the very interesting things (to me) about reading about “invisible disabilities” (for lack of any better description) is how often I’ve been nodding along going “Yes, yes, yes.” It’s been downright spooky sometimes.
That’s the thing about “invisible” identities: invisible to whom? How much it assumes about who perceives (that they’re sighted, that they’re an outsider, etc) and how harmful it can be. I am thinking up a post on this very thing.
Just to touch on what you said about not claiming the label for oneself in comment 14, peanutbutter, the thought that people can try to force one into a label is really angry-making. I’ve been fortunate in that I got to label myself.
My disabilities were mild enough for a long time that I was mostly able to maintain full time jobs/school/etc. So I didn’t consider myself disabled then. I took on the specific labels of “fibromyalgia” and “depression” and whatnot, but not “disabled.” Even when things flared up badly enough that I did need to take time off from work/school/etc. for a few days or even a few months, I didn’t consider myself disabled.
Then the fibro got suddenly and severely worse and the months dragged on and my doctor suggested I start applying for things like social security disability and medicaid and the need arose for a disabled parking tag and a cane and a shower chair and … and my doctor wrote things on the application forms for this stuff that read “this patient is permanently and totally disabled” and it was like, yep. That’s me, now.
It took me having to focus intently for months on filling out forms that required me to list every single thing that made life difficult for me and had been making life difficult for me for years to really call myself disabled. And I suppose I was disabled all those years prior – not “permanently and totally” maybe, but enough that I always had to be hyper-aware of my limitations, couldn’t take or keep certain jobs, had to leave school and jobs I liked at various times, had to call in sick a lot even when I was able to be in school or work, etc.
So, I think for me, it’s not so much claiming the label for myself now, since I’ve been doing that for years already – but admitting that the label actually did apply to me before I realized it. That being totally unable to work wasn’t when I became disabled. It was just when I became too disabled to work. Ya know?
.-= Rosemary´s last blog ..Blahblah =-.
I identify as disabled more on the net than I do in meatspace
I still struggle with not seeing my mental illnesses and a moral failing on my part.
.-= thetroubleis´s last blog ..What It Is To Be A Monster =-.
I identify as disabled. Partly because I don’t have a choice (I claim disabled students allowance) but partly because that is what I am!
It is easy to write that, but in reality it is a lot harder to put into practice.
For example: part of my disability is an inability to articulate things easily. In one of my classes at university, several of my classmates are non-native english speakers. We all, in our various ways, have difficulty finding words sometimes, but somehow I’ve managed to convince myself that their reason for having difficulties is more legitimate that my reason.
I am working on it, but it is hard.
Quisp:
“…mixed with the midwestern Protestant work ethic I was raised with; my disabilities are challenges I’m supposed to rise above, and keep personal issues private. As a feminist, I know the personal is political, but claiming disability feels a little like oversharing to me.”
Yes! I am having this same type of struggle. That combined with the feeling that I’m not disabled enough to claim the label makes me feel really insecure about “coming out” as disabled. I still haven’t “come out” to many people because the few times I’ve worked up the nerve to mention it people get all concerned, as if now that they know I have a disability I’m about to fall over and die RIGHT NOW because I am so fragile and pathetic and they must PROTECT me and ask me if I need help every couple of minutes. Um, hello, I was just a regular, independent person to you a few minutes ago.