For a long time, I’ve struggled with whether or not to identify as ‘disabled’ (or as a ‘person with a disability.’) It’s only very recently that I’ve identified myself that way in my own thoughts, and even more recently that I’ve begun identifying that way publicly. (As in, my name listed as a contributor to this blog was pretty much my first public identification as a person with a disability.) Because I know a lot of other people who are unsure if they qualify as a person with a disability or are reluctant to identify as such, I thought it might be relevant to talk about some of my hesitations to identify this way and what finally convinced me that I do identify that way and why it was important to me to do so publicly.
My first reluctance came from what seems to be a very common concern – I did not think I was disabled ‘enough’ to identify as a person with a disability. At this point in my life, my disability is fairly well managed by medication and the approximately 900 million hours of therapy I’ve been through. My psychiatrist sees me once every 12 months to check on my blood levels and spend 10 minutes with me checking in, and other than that, I’m totally disengaged from the mental health care system. (Except for the pharmacy.) To everyone except those who know me extremely well, I pass as neurotypical. I work full time at a professional job. I live independently and manage my own household and finances. I often have days where the only thing relevant to my disability is the 30 seconds at night when I take my pills. Surely I cannot be disabled!
But I realized that view erases the very real aspects of my disability that I continue to experience. The periods in my past when I was more severely impaired by my disability (including my hospitalization) still exist and are still a part of me, no matter how well managed my disability is now. And the cyclical nature of many mental health disabilities means that while I’m at a relative peak now, I could find myself in a deep trough at any time. And there are limitations involved even with the minimal treatment I’m receiving – I have to make sure I have a dose of meds with me in case I sleep at a friends’ one night, I have to deal with the punishing withdrawal symptoms when I forget to take a dose on evening, I have the dry mouth and the flaky skin and the lump of belly fat that are side effects of one of my meds. (And there’s my monthly tangle with the pharmacy refill system.)
More importantly, I know that if I tell anyone my diagnosis, if they find out about the hospitalization or the 900 million hours of therapy or the meds I’m taking now, I change in their eyes. It’s easier for them to dismiss my emotions as an artifact of my disorder and thus irrelevant. It’s easier for them to patronize me because they assume I’m not capable of taking care of myself. However I think of myself, I know they will think of me as a person with a disability. (Actually, I suspect many of them would think of me as a “crazy bitch.”)
I’ve also struggled with identifying as a person with a disability because of the split between mental and physical disabilities. Even when I began identifying as a person with a mental health disorder, I still didn’t think of that as being a person with a disability. I thought people with physical disabilities focused mainly on physical access issues, which weren’t at all relevant to me. I don’t need reserved parking spaces, I can walk up stairs, I don’t need a special restroom.
Then I realized how artificial the distinction is between mental and physical disabilities. When I have a panic attack, it affects me physically. When I am depressed, I have no energy and I can’t walk up stairs. I also realized the enormous overlap – lots of people have both mental and physical disabilities, and it’s common for the treatments for physical disabilities (like narcotic painkillers) to have cognitive effects. I also started talking to people with physical disabilities and heard them concerned with much more than physical access which, while very important, is not the sole focus.
All of that is not why I began identifying as a person with a disability, though. I thought of myself as an individual struggling with a very specific and individualized problem. I know other people with the same diagnosis as me, and all of us have had very different experiences and very different approaches to treatment. So I thought of myself as an exceptionally special snowflake that had some exceptionally special difficulties for me to go through, difficulties that nobody else had or would experience. So I thought about my mental health issues as they affected me personally, how they had changed my life, how they had made me the person I am today. But because they were so inherently unique, because nobody had gone through exactly what I’d gone through, I tended to think of my disorder not even in terms of my diagnosis, but in terms of “the very special snowflake disorder that only applies to me.”
Thinking of it that way meant that all the negative reactions I got, all the judgments I got, all the dismissals and marginalizations and refusals to take me seriously, all the hoops I had to jump through to get what other people had – they were just about me. Personally. They were not about how people responded to mental health problems, they were not about how people respond to and discriminate against people with disabilities as a group, they were about ME. I had brought them upon myself because of my disordered behavior, because my special snowflake-ness was so annoying or intolerable that people had no choice but to write me off.
Amandaw recently told me that she thought of disability as a political identity and I strongly agree. Thinking of myself as part of a group of people who routinely encountered oppression on the basis of their disabilities meant that the reactions I got, the disregard, the disgust thinly veiled as pity, the refusal to deal with my emotions and ideas – that wasn’t because of me. That was because I was part of a group subjected to systemic and institutionalized discrimination and oppression. And it was wrong. But it wasn’t until I started thinking of myself as part of that group and thinking about how these systems affected all of us that I needed a term for “people who are discriminated against or oppressed by our culture and institutions in the same way I am.” It wasn’t until I started thinking of it as a group issue, rather than an individual issue, that I needed a word for that group.
These systems that oppress us don’t care one whit about my special snowflake-ness. They don’t care about how well I’m doing now. These systems exclude and marginalize and dismiss and mock me based on my disability status without taking into account any of the individual variations in my life and my disability. And when I hear a caseworker explain that “you can always tell who is crazy because they live in cardboard boxes and tell people it’s a palace and they’re the king,” it feels like a slap in the face whether or not she knows I’m disabled. It’s about the systems, the institutionalized attitudes. It’s not about me.
Even after realizing all of this, I was still reluctant to identify publicly as a person with a disability. I would share details of my mental health history and the effects of my mental health conditions, but I still wouldn’t come out and identify myself as a person with a disability. At least, until I began talking and working with the amazing women who are my co-contributors on this blog. Because that’s when I realized that identifying publicly gave me power. Gave us power. Allowed us to come together as women who experience oppression and discrimination on the basis of our disabilities. Allowed us to work together to identify and address these problems, to find others affected in the same way, and to come together to try to change things. Thinking of myself as a super special snowflake made that kind of collaboration and support impossible, because nobody could be in my special snowflake group with me.
So while I’ll always think of myself as a pretty damn special snowflake, I also now think of myself as a woman with a disability. And identifying that way has allowed me access to power and support that I don’t think I could have found otherwise.
Note: I’m going to moderate this comment thread with a heavy hand to ensure that there is absolutely no policing of disability. If I self-identify as a person with a disability, I do not owe you the information of my diagnosis, my health history, or my therapy records to ‘prove’ that I am disabled. Similarly, I will respect how others self-identify if they are doing so in good faith and expect other commenters to do the same.
This post is so strikingly similar to my own experience and observations and the awakening that is slowly dawning on me, and therefore I really don’t have much to add but felt the need to say something.
Thank you for sharing it, Abby Jean.
I’m not gonna lie on this. My whole entire reason is fear.
I am terrified to admit that I could be PWD. That my ADD and how much it’s screwed with my life, my relationships and what I’m able to do isn’t something I want people to be aware of.
It’s fear of dealing with being another highly erased class of people of having my intersections of being trans and being a woman further intersected by disability. It’s fear of being subjected to more inhouse battles and policing on top of what I already face from feminists and other trans women for what I do as a woman who is trans.
Writing this comment has me shaking because this is tantamount to admitting that I’m PWD. But I’m still not sure I can self identify as PWD yet. I’m still not sure I can handle focusing on yet another oppression set on my head when I barely have a handle on facing beyond what cis women face from sexism and transmisogyny combined.
I just don’t think I’m ready to take that step, even with the support that could come from it.
.-= recursiveparadox´s last blog ..We Are Not Spared: The Shapes And Sizes Shame Game. =-.
It really is a tough transition, beginning to identify this way. And I think you describe perfectly the difference between the two mindsets: first, thinking that you are unique in facing this particular problem, individualizing it, attributing it to you/your needs/your problems rather than the world/its structure/its refusal to adapt.
I have these conditions, thought I, but they’re just conditions. I didn’t let myself think of them as “disability” because disability meant that one single condition (on its own, never combined with anything else), with a clear diagnosis, was severe enough that you were unable to do anything. Of course, the line of “un/able to do what, when, how?” always shifted — to just the right place so that I was on the other side of it, never qualifying. But certainly, it couldn’t just be this conglomeration of symptoms and situational context and other things (family issues a disability?) that combine to restrict my ability to go about my life as a healthy person would. That’s not disability, that’s, um…
This is our medical model at work. The medical model draws stark lines. You must fit cleanly between those lines — no leaking through, or pushing up against the sides. You’ve got to be easily categorized, you’ve got to fit easily on the form. If you don’t — and none of us do, not a one — you don’t count. So says the medical model.
There’s more to it than that single model — there are a variety of biases and preconceptions we don’t even quite realize we have, as a part of this society. But it seems, no matter what, to always work together in just such a way as to prevent a person from identifying with a group that provides them strength in community, and qualifies them for necessary services and accommodations. And that’s what this is about, in the end: policing the boundaries of that identity, because our society doesn’t think it’s fair that anyone gets those services and community. It’s “special treatment” and all. So we try to make sure that as few people as possible lay claim to that group, to make sure everything remains “fair.”
There’s more to it, too, on a personal level: admitting to your inherent dependence on others — which is, truly, inherent to humanity, not disability — giving up that pride (which is, ultimately, and unconsciously, pride in being abled — not being independent, but pride in not being one of Them), and so forth…
And it does really shake you, as you’re trying to sort all this out. And it’s totally understandable that it’s rather difficult. Because we’ve been saddled with so much shit from society about what disability is and ability is and The Way Things Should Be and not being lazy/freeloading/mooching/whatever … truly, none of us ever really manages to get all of that sorted out, internally, before we go. But it’s hard in the beginning, because there is so much in front of you to figure out. Just remember: there is also so much in front of you to discover. There are people to encounter and grow close to, there are things to learn and explore, there is peace to make with one’s community and oneself… and it will be worth it.
Somewhat relevantly, I’m having to deal with some things recently and my psychologist (my “counselor”) is throwing out the word PTSD. And it scares me to death. I can’t face that right now. I can’t tell people I have PTSD, not even the people I am comfortable talking about everything else with. It’s just too terrifying, there’s so much to take on, so much to deal with once I admit it, and I don’t feel ready to take it on.
Of course, whether you use the word or not, you already have whatever you’re trying to avoid “taking on” — you’re just trying to pretend it doesn’t exist. Trying to wish it away. That never works, I can tell you from experience.
But it’s a process.
Funny you should mention PTSD — I have many of the diagnostic criteria but I came up three points short of the diagnostic threshold last time I took the MMPD. So I don’t really have it, right? But I had a traumatic childhood and some adult trauma. I’ve got a whole lot of stuff that looks a lot like autism but I wasn’t diagnosed with that either — at least in part because autism is mostly diagnosed in children and when I was a child autism wasn’t a spectrum. Do I get to claim those as parts of my identity because they help explain to me who I am? Am I prohibited from doing that because only professionals who aren’t me get to make those decisions?
I am absolutely claiming physical disability for myself though. When scooping out the cat box or taking a shower or putting the dishes away leaves me winded and needing to lie down and rest, I’m fucking well disabled.
Kaninchen, I sort of have the same deal. I’m not anywhere on the autism spectrum, but at the same time I know for a fact that I’m hardly on the neurotypical one either, because I do things like actually failing the MMPI. (My results read as if I had randomly responded, when in actuality, I ended up overanalyzing each situation and found it hard to pick a single particular answer without excessive thought…which shifted depending on the severity of the situation as I perceived it as actually happening to me. Essentially, too much imagination and a hard time with getting RID of empathy.)
But at the same time, the issue of what identities I should or can take on…that’s hard.
I’m with recursiveparadox. Afraid. I’m very proud of the step you took, abby jean, but I don’t know if I could take it in my own life. Are you “out” in your professional life? I’m not sure if I can be, given my future profession in a couple of years. “What’s wrong with you?” “…Depression and anxiety? *cough*” “Oh, okay, that’s normal for the field!” Replace that with bipolar and I don’t know what I would get. I’m afraid my resume and my *person* would disappear and I would be a disorder, a disease.
And that is exactly why we need this space. Thank you.
i am somewhat “out” at work, actually, and do trainings on how to work with clients with mental disabilities, so i involve some of my experiences and insights in the training. i do present it strongly as “here’s some stuff that happened to me so very long ago and now i am Totally Over It!” to discourage being associated with it now, though. even with that, the scope of my disclosure has been fairly narrow, and even within that scope there have been some negative consequences. so i think those concerns are very legitimate and demonstrate the degree to which ableism can be a reasonably expected reaction.
i also want to make clear that this was a decision and identity i came to myself and believe strongly that others should make their own decisions about how they identify. i don’t want this post to feel like pressure for anyone to identify as disabled. but for a long time i had been thinking of it only in terms of risks and potential repercussions and hadn’t realized the benefits and strength i would feel. at the end, it was something i claimed rather than something i gave in to and would hope the same for anyone else.
A lot of this really rang true for me. Thanks for writing it. I’ve thought a lot about whether I can or should identify as disabled over the last year or two as I face what seems to be misunderstanding or backlash at work about my depression. Since this blog was started, I’ve thought about it even more.
If someone I knew described themselves as feeling the way I feel, and having major depression, and they also identified themselves as disabled, I wouldn’t question it; nevertheless I’m still uncomfortable identifying myself that way. It’s personal, but as you said, it’s also political. Publicly identifying as disabled would create more visibility for an invisible disability, right?
Mood disorders and related disabilities seem to be a real double-bind where this is concerned. If you don’t tell people you have a disorder, they think badly of you for the times you don’t come up to their version of normal. If you do tell people you have a disorder, they still find a way to stigmatize you–they’re dismissive of your feelings, they interpret you negatively, or they think you should just use willpower to somehow make the disorder go away. And of course some people are really decent about it and have a pretty good understanding of things, although as things happen they’re rarely one’s managers or hiring officers or HR reps, it seems like. 😉
Thank you for this post and the on-going comments. I’m also “afraid” of coming out PWD because I never thought I had it “bad enough.” Part of the problem is that I’ve internalized the years of doctors telling me it was “all in my head” before I found one that actually recognized and understood my “unrelated” cognitive and physical difficulties. I’ve come to understand myself as having a disability, but only to myself. I’m scared of coming out as PWD because: 1) I work in a highly intellectual field and I think I rightly anticipate that many of my colleagues will view my cognitive disabilities as personal failings or “just not being cut out for the job,” 2) I’m afraid that other PWD will think I’m faking it. I think the second point is a result of living with constant fear of being “found out,” since I can often pass as non-disabled around people that don’t know me personally. It’s the same fear in a different context.
Anyway, reading these posts makes me feel less alone.
I love this post.
I didn’t have a choice about coming out with some of the mental aspects of my disabilities, even the ones that I managed to the point that they don’t affect me now, because of the toxic people who were in my life when I was going through them (and who contributed to them in harmful ways). Now, because they have that knowledge about me they try to use it as a way to demean me, to make me seem “less than” in other people’s eyes. It is used as a tool against me to devalue and discredit me, and it hurts so incredibly much, because of the work I have done to get through all of it. It revictimizes me while abusing me all over again in new ways. We see it all the time “you can’t believe her, she’s crazy”, or “she’s all fucked up in the head” or “she has a history of mental health issues”…and the stigma takes over and suddenly we are a different person.
Your mental health and your disability is not someone else’s to use, and that is what made it hard for me to come out about and accept my physical disability…the way the people around me reacted to my mental health as I was trying to work through it (you don’t need those pills! You should just cheer up! It will all be OK!).
I can’t blame you for holding on to it and wanting to keep the identity for your own, knowing how hard it has been for me, and all the pain it caused. I know how well managed life can be with mental disorder, and how unforgiving the world at large can be for things they refuse to understand. For me, saying “I have a mental disability” would be admitting that people who mean me harm are right, and that is a power I can not give up.
I think one of the most important things I’m learning from this entire blog as a whole is that while people may have conditions which count as “disabilities”, as far as the individual people are concerned, those conditions aren’t actually totally and permanently disabling. I mean this in the sense that everyone has their good days and their bad days – and while the good days for the individual might mean they’re able to do maybe fifty percent of a so-called “normal” daily workload, as compared to say ten percent on a bad day. But they’re still *able* to do things, even on the worst days.
Realising this has begun to help me realise that yes, I do have a disability. It’s not a physical, visible disability – I’m another of the mentally unwell – but it is a disability all the same. Most of the time, accessibility issues aren’t really my worry (although I’m not sure whether my hypersensitivity to random noise counts as an accessibility issue or not?); my biggest worry with “coming out” as disabled would be the automatic “but you don’t look sick” thing (of course I don’t look sick; I’m not physically ill, I’m mentally unwell), followed quickly by the whole “if you’re crazy, why haven’t you been in the loony bin yet?” question (not a danger to myself or to others, that’s why) and all the issues of “are you faking it” (gods, I wish I was – then I could quit) that come along soon afterwards. This hasn’t been helped by realising most services to deal with the sorts of problems I’m having (difficulty motivating myself to take my meds regularly, difficulty motivating myself to deal with the housework, difficulty motivating myself to deal with the rest of the godsdamned world etc) don’t actually kick in until the affected person is either a lot older, or a lot more physically affected than I am. I’m in my late thirties, I’m physically capable of doing these things, I just don’t know how to get from the “I should” to the “I have”.
So according to the rest of the world, I’m probably not disabled. I’m just lazy. Or self-indulgent. Or over-acting. Or whatever. But whatever I am, what I’m not is disabled.
To me? Well, I’m starting to realise the mental illness is a disability in its own right – and just because I don’t need a wheelchair, a cane, a guide dog, or an interpreter doesn’t mean I’m not disabled in my own way. If I admit it to employers, they immediately file my resume in the circular file; if I tell folks in person, they step back and look closely to see whether they should call for the hug-me jacket; if I mention the problems I’m having to my doctor or my shrink, they seem to have a complete and total inability to realise that yes, these are problems I’m talking about here. I’m not making it up, I’m not trying to be a drama queen – and I’m not just able to get around these issues by thinking happy thoughts and being a good little bunny and pretending they’re not affecting me.
And with all that said, I’d better go and take my meds, since writing this has got me thinking of them, and if I don’t do it now, I probably won’t do it at all.
I’m going to read the other comments *after* I post mine because I want to respond to the original post alone right now.
I’m in the middle of a similar road of self-identification.
When I first bumped up against the idea, I wasn’t comfortable applying the term “disabled” to myself, either out of ableism or fear of appropriating. Either way, I was also concerned that I wasn’t disabled *enough* to identify as such.
Because this may be relevant, I have a mental health condition that’s largely unnoticeable to others unless I choose to share with them as well as a chronic pain condition that’s only “extreme” every once in a while. They’re mostly invisible, sometimes even to me — and as such, I was never labeled “disabled” by others — so it didn’t occur to me to apply this term to myself.
But then I read this post — and then this one — and realized my health conditions do affect my life. They make proper medical care — including providers who don’t dismiss or patronize me — both something I’ve had to fight for and a downright rarity. They make it necessary to explain to people, sometimes, that being triggered by a particular action or comment is worlds away from getting “pissy” about it. They’re the reasons when what I mean is, “I have dealt with this before and know how to manage it,” but what I say is, “I’m okay.”
I realized that I do encounter a profound lack of understanding from Big Groups — i.e., the medical establishment, the business end of the health care system, society at large. And just because it doesn’t come with a convenient visual cue doesn’t make it less real — and doesn’t mean I (or we) shouldn’t work together to address it.
.-= Tori´s last blog ..I am drinking iced coffee from a beer glass. =-.
thank you so much for this. despite having been on social security disability for years, i’ve struggled as well to identify as disabled – partly because i saw physical disabilities as the “real” ones, partly because i grew up so used to invalidating my difficulties about everything. i feel like i’m taking space away from Real PWD. like validating me necessarily invalidates someone else. i can relate with nelliejean so much about the fear of others, especially others in the disability community, thinking i’m faking it.
it doesn’t help that so many things related to my disability are seen as character defects. i go hungry because i’m too “lazy” to make it to the grocery store; no one would believe that i can have that hard of a time just being in the presence of other people (and this is with self checkout… without i am pretty much barred from the trip entirely). i have trouble with my homework because i’m “lazy”, not because the panic or the stress or the fog has zapped my short-term memory; it must be “easier” to sit here freaking out and planning suicide because i assume the inability to concentrate means i will fail this class which means i will drop out of school which means my life has no purpose. i could go on and on. and part of my disability is that it’s really hard for me not to buy into the criticisms. it seems so much more plausible that i could be wrong, bad, evil, lazy, selfish, than that i could be disabled because of a lack of adequate support / a genuine condition. and when other people reinforce those ideas directly or indirectly, it’s even harder for me to give myself any kind of space at all.
i also really really appreciate your mention of some of the physical effects of mental illness. i tend to think that i have an obligation to ignore any difficulties i have because i am (or was, a diagnosis of fibro recently got thrown into the mix, which complicates everything) “only” mentally disabled.
the social model and the disability rights movement has been so helpful for me in these ways on a very personal level. i won’t claim space if it’s for aberrant snowflake me, but when it’s political, i am able to give myself so much more room. even be angry at the institutionalized ableism that makes so many things about school, or other aspects of life, so difficult. it has been life-changing to find this movement. i am so much more assertive when i connect my experience to other people, and think that by making room for my needs, i may be making it easier for someone else in the future to do the same.
.-= myriad´s last blog ..just low =-.
I also love this post, Abby, and want to offer you hugs and wish you strength. 🙂
In reading this post and its comments, I’ve wanted to say “Me too!” and “This, totally” so many times, you have no idea.
*hugs to everyone who wants/accepts them*
I’m in a transition of sorts now, too. In the last four years, I’ve progressed from being able to do most of the usual things I’ve always done, just a bit slower and cautiously and with pain, to significantly altering the way I live and my family lives. It’s not just that the pain has increased, but I’ve weakened quite a bit physically. I can occasionally pop in to the grocery store and grab just a few items on my own, but I cannot push a full cart nor can I reach things from the lower shelves. So the whole family has to load into the car every weekend to go shopping. My husband is the muscle, and I’m the brains of the grocery operation. I’m sure my 7 yr old would prefer to do something else. 🙂
The transition I’m in is the shift in my relation to my condition. Previously, I identified as having a potentially disabling condition (Ehlers-Danlos.) That was an important step – I needed time to process that, to reconfigure my plans, and to mourn a bit. Now, I’m beginning to identify as disabled, and accepting that I will become moreso as time progresses. This transition isn’t as hard as I thought it would be – some days, it’s a bit of a relief. I had dreaded becoming disabled, and now I am, yet I’m still me, I still laugh, and I still contribute to my household and my community.
About a year ago, I had an epiphany of sorts. I had been looking at my impending disability as being defeated by my condition. I realized that a strategic surrender was in order. Rather than fighting, I’d accept. Of course, that’s still in the works, and I’m still mad as hell some days, but it smoothed my road a bit.
Nellie Jean said, I’m also “afraid” of coming out PWD because I never thought I had it “bad enough.”
I can understand that sentiment thoroughly. I have a sister with cerebral palsy, so the manifestations of her disability have strongly affected what I think of as “disabled.” I am very much loath to identify as disabled with my anxiety disorder and occasional depressive episodes because they don’t seem “bad enough.” The medical model is clearly talking here. I have more thinking to do.
Thank you for the post, Abby.
Bravo! What a wonderful article 🙂
Another me too and hurrah and wow it’s cool we can talk about this and thanks to the FWD for hosting this discussion
@10 I shared that fear that other PWD will think I’m faking it, particularly because my initial contacts were blind and Deaf people, who incorporate a lot of “just disabled, not sick or weak” into their pride culture. Then I had a chance to work with other people in a cross-disability coalition. There’s still hierarchies, but there’s also a willingness to accept a person where they are.
@12 Yes yes yes! While in the US the benefits system only allows for functioning/non-functioning binary, real people vary all over the place. Some impairments are really easy to accommodate, and others aren’t. I have really good days when I can pass as totally healthy, and others when I’m up for 4 hours/day in my powerchair. I commend to you Disability Carnival on Work (highlight reel on FWD.
@17 “strategic surrender” is a useful reframing! When I first got ill, I spent a lot of effort on “getting diagnosed” and “getting cured.” Then I recalled reading about World War II, and how so many relationships were defined as “for the duration”—a span of time unknown and unknowable, but bearable because that uncertainty is shared by all.
.-= Jesse the K´s last blog ..Meta about Meta for the Wheeee! =-.
I have a combination of two or… let’s face it, three (it turns out that the clinical depression I had in my teens never really made it to the past tense at all) disabilities where it’s not at all common for people with them to identify as disabled – sentiments along the lines of “you’re only disabled if you think you are” are very, very common among both people who stutter and autistic people (especially those who ID as Aspie), I’ve found. I used to buy into these, up until about fifteen months ago when something sparked the realisation that a lot of the problems I was having in everyday life weren’t me being lazy and weren’t going to magically go away by wishing hard enough, that they were actually due to the ASD and that this constituted a disability. (I probably wouldn’t have made that jump if it weren’t for the fact that I got this from one of Amandaw’s guest posts on Feministe about disability – going from “oh wow that sounds awful” to “wait a minute, I do that!” and finding that large portions of the comments from other disabled people often spoke to my experience made it undeniable.)
It’s a bit weird to remember now because I now embrace the identity, but the realisation was absolutely horrible and it took me a long time to come to terms with that. The post was in summer 2008, but I remember still struggling with the realisation in March – I think it’s only since May or so that I’ve been able to happily/proudly say I’m disabled, and I only managed to figure out that stuttering also counted as a disability around that time. I didn’t even realise how much ableism I was carrying around with me until it started aiming itself at me. :/ So I do identify with what a lot of people here are saying. Hang in there!
I still have my regular moments of “I’m taking attention away from the Real Disabled People! I’m just exaggerating/making it up!” but I can generally make that go away pretty quickly these days by reminding myself of things like, oh, not knowing whether I’m capable of holding a regular job. (Which isn’t to say you can’t be disabled if you don’t have this kind of problem! But it’s a handy thing to metaphorically beat myself over the head with when I start going ‘oh but I’m not *really…’)
Would also really really like to chime in on the disability as a political identity thing, because that’s pretty much how I think of it – political and empowering. These days, calling myself disabled means, to me, not blaming myself, not going “but you should have tried harder”, accepting my limitations, seeing the larger pattern in how I’m treated, and blaming other people when they screw up instead of myself. Not calling myself disabled means seeing it all as individual, thinking things like “you shouldn’t blame that woman for turning around and walking away when you tried to ask her what time it was, she’s probably never dealt with anyone with a speech disorder before” without realising that although that may be true it’s symptomatic of a larger problem to do with the way people think about speech disorders and disabled people in general. IDing as disabled may be the one of the most political things I’ve done.
I have only recently begun to accept my disabilities as such, because I never felt they were obvious enough, severe enough, to “qualify.” The idea of “disabled” as a political identity just sort of blew my mind. I am astonished I have never come across that before, and it never occurred to me. But wow, it makes so much sense. For some reason I feel a little silly saying this, but, it makes me feel like I’ve got more power, to view my being disabled as a political identity. It makes me feel a little stronger.
Well, I don’t know if anyone is still commenting on here or reading these replies, but I’ll comment anyway. So, I don’t identify as having a disability, but I have been diagnosed with mental illnesses, namely depression and bulimia. I’m also a recovering alcoholic. I really identify with and can commiserate with a lot of people with mental illnesses (like bipolar disorder, post traumatic stress disorder) and, while I don’t really know what they’re all going through, I have a lot of compassion and empathy for anyone with a mental illness.
I was just skimming the rest of the blog and some older posts and there was another one I really identified with, the poster had overheard a hurtful conversation at work between coworkers about the show House. Wow, did I identify with that. In the poster’s case, she needed to take a lot of medication and her coworkers were complaining about how those people are just addicts. And I’m thinking, well, I’m actually an addict and how many times have I heard people make comments about addicts, how fucked up we are, etc. etc. Most people who aren’t addicts don’t know jack shit about addiction and it can be really hard and sometimes hurtful to hear other people talk about it, and yes, I rarely speak up (and certainly never have in a work environment) because when people know that you’re an alcoholic, or an addict of any stripe, they judge you and look at you funny, it doesn’t matter if you’re in recovery, you’re still one of those crazy fuck-ups.
But I guess my big problem with how I identify and see myself in a larger context (other than just as an addict and a part of a group of addicts) is that my worst afflictions, I have done to myself. How the hell can I act like I’m “disabled” when I basically choose to be? I chose to drink. (But I am powerless over alcohol.) I chose to binge and purge. (But I am powerless over food.) And even though I no longer drink or binge and purge, I still feel, well, crazy a lot of the time. And I don’t really have a convenient diagnosis for that one, I’m just fucked up. I have “issues.” And I feel that I am to blame for not dealing with them. If only I worked harder on myself I wouldn’t fly into rages at my husband, I wouldn’t have a debilitating fear of intimacy (and it is disabling, because I seem to have great difficulty having relationships.) But, yet again, and echoing others, I feel like it’s “not bad enough.” I don’t have manic phases, suicidal thoughts, I get out of bed everyday and live my life, but I still feel pretty fucking crazy sometimes. Am I? And is it my fault? How can I possibly think that I’m like someone with bipolar disorder, who didn’t choose to be bipolar, who didn’t do it to herself? (Never mind that many people with bipolar disorder turn to drugs and alcohol to self-medicate…)
Anyway, I kind of hope that commenters and/or the author are still checking this post because I want to know if I belong. I feel like I belong with all the other “crazies” but…
Emily —
It’s a lot harder to explain. I haven’t figured out how to yet. But I don’t think you need to have a medical diagnosis to “count” as having a disability. According to the social model, disability is not so much about our individual medical condition as it is about society being built around the needs of “normal” people. People with addiction — people with psychological issues that don’t fit neatly into a medical disorder — people with other sorts of mental and physical differences — they are also shut out from society, their lives are also made difficult because of society’s refusal to bend and change and accommodate.
I’ve been thinking a lot on the comments about addiction in particular since I posted on that conversation at work, and someone else pointed out how excluding and hostile it can be to people who have dealt with addiction to draw that distinction… like reinforcing the “good crip, bad crip” dichotomy in yet another way. I don’t know that I have anything terribly insightful to say about it yet. But it hit me hard, and I’ve been thinking hard about it, trying to dig down and really understand it. It might take me awhile to really do that. But I’m trying.
As far as whether you “choose” the things that affect you and therefore don’t count as having a disability, this is what I would say: Society continues to choose to structure itself in such a way as to exclude you, no matter how you ended up the person you are (and much of what we construct as “choice” and therefore responsibility on the part of PWD and others is a lot more complicated than the word “choice” indicates). And the person you are is still whole, complete, and worthy, even if the rest of society is being a jerk about your differences.
Thanks for responding, amandaw. Everything you said made sense, but I still have a hard time seeing myself as not ultimately responsible for “what’s wrong with me.” But this:
“Society continues to choose to structure itself in such a way as to exclude you, no matter how you ended up the person you are (and much of what we construct as “choice” and therefore responsibility on the part of PWD and others is a lot more complicated than the word “choice” indicates).”
is so true, I think. I am the way I am, and I think that there’s a lot less “choice” involved in how I got this way than I realize. Another post on here that I really identified with was the one about our brains not working like other people’s brains. My brain wasn’t really “normal” as far back as I can remember and I think my addictions were how I coped with that “abnormality” for a long time.
“And the person you are is still whole, complete, and worthy, even if the rest of society is being a jerk about your differences.”
Thank you for this.
One other thing. There are a couple of disorders that sound a lot like me, but no one’s ever diagnosed me with them. And I was just thinking about how conditioned I am (and probably most people, and I bet more women more so) to thinking that I need someone else’s “objective” opinion to make my experience real for me. Like, I have lived my life and I know my experience better than anyone else, but I completely doubt it unless a shrink or someone validates it. I completely distrust my own experience. And part of that is, I just doubt myself, I’m insecure, yada yada yada. But another part of that is that we are told that we don’t know anything about ourselves and we need professionals to tell us. And this is totally relevant to all people with disabilities, I mean how many of you have been told by doctors that it’s all in your head, or you shouldn’t have that much pain with the meds you’re on, it’s impossible, or whatever. Your experience is totally doubted. Fortunately I haven’t dealt with this from counselors or anything, but I know it happens. And I have definitely heard people say things like fibro-myalgia is a made up disease, there’s no such thing as chronic fatigue syndrome people are just lazy, etc. Subjective experience is constantly doubted and demeaned and through that we are conditioned to doubt our own experiences, which when you think about it is utterly absurd. There is nothing closer to “me” than my own experiences. And what the hell is the point of such arbitrary criteria for diagnoses? I’m not “anorexic” because I have never lost enough of my body weight, but I’ve compulsively starved myself. I’m sorry, but that’s fucking anorexic. Fuck you, DSM and fuck you medical establishment for telling people what they feel, for constantly denying people’s own experiences and telling them that what they feel isn’t real. If it were a partner or a parent telling us that, we’d call it emotional abuse. It’s dehumanizing, just treat people like human fucking beings, afford them the respect of being able to define their own experience. It’s really a very simple thing.
Thank you for an amazing piece.
I am a woman with multiple disabilities and medical conditions. The most obvious of these is Cerebral Palsy. Though this might sound strange although I use a motorised wheelchair I remain independent in the major aspects of life and therefore for a long time didn’t think of myself as “that” disabled. However non disclosure of the fact of my physical disability has not really ever been an option. I quite literally “roll up” and deal with whatever reaction or preconception I am faced with. As a result for a long time I only intellectually understood the right of and preference to non-disclosure.
That was until I had more hidden impairments which were inconvenient and periodic for me in many ways but generally not obvious. I found these carried much more stigma than I was used to. I also find it much more exhausting to ditooscuss; even with those closest to me. To those closest it can seem to be “one more thing” and as someone has commented I find people want to use one impairment to explain away the symptoms of another. There is also the whole issue of privacy which is another whole debate.
So yes I now understand more of both sides of this issue and am now more aware of the divide between the different types of disability; with me and many others straddling the fence
“Fuck you, DSM and fuck you medical establishment for telling people what they feel, for constantly denying people’s own experiences and telling them that what they feel isn’t real. If it were a partner or a parent telling us that, we’d call it emotional abuse. It’s dehumanizing, just treat people like human fucking beings, afford them the respect of being able to define their own experience. It’s really a very simple thing.”
YES. THIS xA MILLIONTRILLIONBILLION. Not to mention that when I try to explain, I get rushed through (because a doctor’s time is valuable, dontchaknow) and flustered and I can’t explain right. And my doctor STILL seems to think that I can start tapering down my meds. Um, excuse me, if you’d give me half a second of your attention and just WAIT for me to figure out the words (oh hi, fibrofog, yes, doctor, you should be familiar with this since it’s in your specialty) then I would tell you that I’m not really functioning as such.
There are many good things about my doctor. But there are also bad ones.
I’ve struggled with being “disabled”, but for me it’s slightly different; I’ve been trying to get disability, but nobody will believe me that I’m as disabled as I say I am, because they see me on my “good” days. But I still somehow managed to mentally pooh-pooh the label because obviously, I’m not disabled enough. (After all, the medical establishment and the government say so, so it MUST be true, right?)
“The periods in my past when I was more severely impaired by my disability (including my hospitalization) still exist and are still a part of me, no matter how well managed my disability is now.”
This. I am anorexic. I spent years being extremely underweight, and became accustomed to having my illness “visible.” I am still underweight, but what I (sarcastically) like to call a socially-acceptable level of being underweight. I am no longer “visible.” People assume I am healthy – and even ask me for weight loss tips – unless I outright tell them otherwise. I have learned to present as having fairly “typical” eating habits in social situations, which is made easier by the fact that it’s so common for women to be on a diet that no one questions if I don’t eat much. I work full-time, I go to law school at night…but no matter how well I am coping, nothing erases all the time spent in hospitals, the time spent withdrawing from the world, the time spent agonizing over whether it was okay to eat this thing or that. In times of stress, my first response is still to stop eating. And while I seem able-bodied now, at lower weights, I could barely walk or do many things I take for granted now. My life was just about trying to keep warm and surviving to the next day. I have a hard time talking about it because so many people see eating disorders as a choice, something you do to yourself – so if you are suffering, physically or mentally, it’s your own damn fault.
I’ve just recently found this blog, and my head is full of 101-type questions. I’m very late in commenting this thread, but oh well, maybe writing my comment will clear things in my own head anyway.
I am wondering whether I in fact have had a disability, and whether it will (or should) affect the way I identify now. Many comments in this thread made me think hard, especially this:
“The periods in my past when I was more severely impaired by my disability (including my hospitalization) still exist and are still a part of me, no matter how well managed my disability is now.”
I’m wondering if this might be true in my case too. I have been clinically depressed for many years, although never hospitalized (and, of course, admitting that somehow makes me feel I was not “sick enough” after all). I also suffer from panic disorder, and that gets worse when the depression is bad. And I’ve had OCD since I was a small child (it wasn’t diagnosed at that time, but it was very visible anyway). When I started reading this blog, I initially thought only whether or not I should maybe consider depression and panic disorder as disabilities. Not before I saw OCD explicitly mentioned did it occur to me that it may “count” as a disability as well!
I can understand how anyone with depression, panic disorder, or OCD might choose to identify as disabled. I can also understand the reasons why it seems difficult (“I’m faking it”, “it’s not visible enough” etc.). But how about someone like me, whose depression has actually gotten a lot better, to the point where I think I’m simply not depressed any longer? I know depression might reoccur at any time, but the fact is, it’s 3.5 years since I stopped taking medicine for it and 2.5 years since I stopped going to therapy. And, depression-wise, I’ve been OK ever since. I know I’m very lucky in this aspect.
When I’m not clinically depressed, my panic disorder and my OCD are in check. Either of those doesn’t seem to “go away”, however. I’m not really expecting the OCD to go away, because I’ve had it for as long as I can remember, and it seems something that will always be a part of me (and I’ve accepted it). Panic disorder I’ve had since my teens, and now that I’m not depressed, it has sort of faded into the background. However, in certain situations, panic attacks still occur. And yet they don’t limit my life now, the way they used to. I have a full-time job, I can manage my life well, and I don’t feel like I am disabled (or I don’t feel like I have the right to identify as such). (Not implying here that people with disabilities couldn’t have a full-time job or manage their life, though!)
Now, when I was depressed, the combination of depression + panic attacks + OCD (+ other stuff like insomnia and depression-related physical pain) effectively stopped me from functioning. Now I start to see that at times like those, I could have claimed the political identity as a person with disabilities. Surely if someone is incapable of working, sleeping, or even leaving the house, that must “count” as a disability. But the fact is, having my depression treated (and luckily not having had it reoccur yet), really keeps those other nasty things in check. Where is the limit when they stop being part of my life to such an extent that they don’t “count”?
Can my past experiences really form a basis for seeing myself as a person with disabilities that currently are in check? And am I then a person with disabilities, or a person with potential / hibernating disabilities? And yet, my OCD is NOT hibernating, for example – it’s always there – it just doesn’t make my life hard at the moment! And does having disabilities mean that life needs to be hard all the time…? I know a disabled person can have a good day, or a good week, but what if they have a good year? Good two years?
I’m also intrigued by starting to think the political side of this, about the systemic oppression and how identifying as disabled is a deeper act of recognition than just giving a descriptive name to one’s own experience. I know I’ve encountered lots of difficulties while trying to get adequate treatment for my mental illnesses, and received attitudes I have never been subjected to when I’ve had simply a physical illness. I also feel like my illnesses carry so much stigma that I’ve discussed them with very few people.
In fact, even now I’m working in such a field that I may be denied job opportunities, should my history with mental illnesses (and my current proneness to panic attacks) come up. Or, rather, there may be instances where I will need to disclose them, and that will surely limit some tasks I am allowed to take upon myself. So, although I find it hard to identify as someone with disabilities, the fact is, I couldn’t do same things that someone else (without the same conditions) would be allowed to do in this same job. My past is not only “past” in this sense – it is also limiting my future. I don’t find that unfair in this case, but it certainly is a limitation. If I in fact live with such limitations, should I perhaps consider identifying myself as a person with disabilities…?
OK, these are the same questions that surely have been asked by many, and I see I’m not really contributing anything new here. I’m also starting to understand this is a personal choice, and a political choice. No-one can figure this out for me. But in case someone is or has been in a similar situation, I’d love to hear how they think of their conditions. In case someone’s depression does get better and stays in check for possibly years, do they still think of it as a disability they have…? Or one they used to have, and will possibly have again? Does anyone consider OCD as a disability in its own right, although it doesn’t severely affect the quality of their life? And what about panic disorder, that does not require medication any longer and is fairly well in check…? Any thoughts on these would be received with gratitude!
brilla – i think it’s great that you’re really digging into these issues. unfortunately, i think the decision of whether to identify as disabled is up to you, not based on other people’s reactions to the factual context of your (potentially) disability issues. as i said in the piece, i have been stabilized on meds for the past 5+ years, but still consider myself disabled for many other reasons. ultimately, the final decision is up to you – i hope continuing to read FWD is helpful to you as you consider these issues.
Hi abby jean,
Thanks for your answer!
“unfortunately, i think the decision of whether to identify as disabled is up to you, not based on other people’s reactions to the factual context of your (potentially) disability issues.”
I absolutely agree! I think maybe I asked too many and too profound questions all at once… It’s just that I’m new to this issue, and it’s kind of flooding my head at the moment (and spilling on the keyboard, I’m afraid). And not just because of what I see as my “issues”, but also in the sense of trying to learn how to be an ally – I feel like a lousy feminist for paying disability theory & activism such scant attention before.
I’m sorry if my post came across as overwhelmingly needy! I’m not expecting anyone to offer me a ready-made self-identification (as if!), I was just wondering where to find some pointers along the way. I belong in other minority groups as well, and although my self-identification has always been up to me alone, I’ve benefited enormously from hearing how others in similar situations have identified themselves, and for what reasons. It just gives one something to start from. I’ve also benefited from studying gender theory / queer theory (for example) and following the debates in those theorist / activist communities. So, I’m really happy this blog exists – I’ll continue following this blog, and I’ll check out some books on disability theory meanwhile!
Thanks again!