Tag Archives: rethinking social norms

Keeping track

One of the more bizarre stereotypes (if one can call it that) about people with fibromyalgia is that we obsess over “every little ache and pain,” to the detriment of ourselves and much to the apparent annoyance of the “normal” people around us.

Here’s the thing: If I were to obsess over my pain in the way that “obsessing” is traditionally defined, I would never get a damn thing done. This is why keeping track of my pain levels each day is so important — so I don’t have to obsess over it. It takes five minutes tops to jot down some notes at some point during the day; if that fairly small action equals “obsessing,” I shudder to think what the alternative might be.

I have a pretty full schedule. I go to school full-time (I’m getting my M.A.), and commuting to school via public transit tends to take a lot out of me even though I live somewhat close to campus; this is to say nothing of actually going to class, participating and being fully present in discussion and activities, and getting work and research done outside of class. And then there’s all of the stuff that’s not school-related: spending time with my partner and with family and friends, taking care of my dog, meal preparation, living space upkeep, creative work and hobbies, and other everyday things that are too mundane to list here. All in all, many of these things are par for the course in “mainstream” life. The ability to do all of these things and more in a given day, however, is something that many abled people seem to take for granted. Given my pain issues and the fatigue that comes with them, I have had to make quite a few adjustments as to what I can do and how and when these things get done. Often, I have to make trade-offs when it comes to what gets done or what I can do; depending on my pain levels on any given day, I might have to scale back on what I can do. There are days, too, when I can’t do much at all.

And yet, when some of us do have to keep track of our pain levels, make trade-offs when it comes to getting things done, give ourselves space to recoup, take a day (or a few) off, or acknowledge that, hey, maybe “getting everything (and more!) done” in the ways that most “normal” people are expected to is unrealistic and may actively make our conditions worse, abled culture (and many abled people) shows up to tell us that we’re Doing It Wrong, that we should be doing more, or that we should be spending our already-limited energy on other or “more important” things. You’re not doing enough, quit being lazy. If you really wanted to, you could be involved in real activism/you could get a real job/you could just suck it up and stop bothering everyone by talking about your pain. Ignore your pain and maybe it will go away. Your pain can’t be that bad! By adjusting your life to your health condition, you are letting the pain win. Positive thinking! Willpower! Bootstraps!

I have to wonder why some of the adjustments that I’ve had to make, such as keeping track of my pain levels, and then carefully planning what gets done according to how I am feeling, seems so incredibly threatening to some folks. Perhaps it’s that they want to explain away why they themselves do not have these problems and will (they think) never have to deal with illness, pain or disability firsthand, because they’ve lived their lives “right.” Maybe it’s because people living their lives in ways different than themselves is scary and weird. It could be because many people simply cannot conceptualize living with chronic illness or pain, and so they have to make people who do into an “Other” whose decidedly non-mainstream existences, life experiences and habits cannot be understood, or even given consideration, by those in the mainstream.

While small things like keeping track of pain and fatigue levels may seem incomprehensible or weird to people who are not disabled, these adjustments are very important for some of us. To an outside observer, the five minutes a day that I spend noting my pain levels — and my planning of my day depending on my pain and fatigue levels (what a concept, right?) — may seem totally alien, and like it does nothing to combat the stereotype of people with fibro as a bunch of hysterical middle-class women who are obsessed with their physical pain (hello, sexism!). For me, it’s a survival technique, however small and “alien” to people who don’t live with chronic pain or health issues.

Imperfections

I am one of those people who often cannot ask for help.

At times, I am so afraid of seeming weak, or whiny, or overly-sensitive, or dependent on other people that I tend to either ignore my own needs until I start flailing around at the last minute in order to not get overwhelmed, or minimize the possibility that some things could be going wrong. I am one of those people who needs to outwardly look like I know what I’m doing and that I have things totally under control — preferably at all times. (Intellectually, I know that this expectation is intensely unrealistic, and can be dangerous; even the most “put-together”-seeming person can be a total wreck in private.)

Part of this is a defense mechanism that I developed around the same time that I started getting made fun of in grade school for my mild cerebral palsy and the limp it caused. Somehow, I figured that if I could be perfect at something — my something being academics — and make it look effortless, other kids would stop making fun of me. This didn’t work out quite the way that I planned; regardless, I still tend to hold onto remnants of this habit.

Part of it is also my own internalization of the cultural ideals that tell people with disabilities that we must always “compensate” for the imperfect status(es) of our bodies or minds, a la the Good Cripple or Supercrip, as well as the cultural messages that tell many women that they must be “perfect” while making it look downright easy, in accordance with the current “ideal” feminine role. A great number of women are told, in ways subtle and not, that we must try to “have it all,” and do it without a drop of sweat showing. We must look good all of the time, we must wear clothes that are “flattering”, we must keep a figure that approximates whatever sort of beauty standards happen to be “in.” We must take care of others’ needs and feelings and make this our number one priority, and think about ourselves last (if at all). We must project an outward appearance of cheeriness, strength, or deference, no matter how we might actually feel. If we cannot do most or all of these things, we have failed. And when this loaded set of expectations intersects with the PWD-compensating-for-disability trope, look the hell out.

These are just a few examples, of course, and these expectations shift in various ways depending upon race, class, ability status, sexuality, gender identification, education, and a host of other factors that are often derided as being remnants of “identity politics.” Identity and its politics, however, still continue to matter.

Here’s where I am going with all of this: For the past few weeks, I have been dealing with newer and more unpleasant fibro symptoms that are starting to affect my day-to-day life. At first, I thought these symptoms were just the result of a bad day, and then a bad week, bad month, et cetera (you can probably guess as to where this leads). I wanted to believe that these symptoms were not a huge deal, and look like I knew how to deal with them until I made it back to “normal,” however tenuous that position is for me. Now that these new and interesting symptoms have become a bigger deal than I had anticipated, a lightbulb has also gone off in my head: I need to work on letting go of this all-or-nothing, but-I-should-always-have-it-together-even-when-I-don’t-and-do-not-need-help mindset.

Today, I finally made the decision to schedule a doctor’s appointment to get help with my new symptoms.

Acknowledging that I don’t have some things completely “together” and that I (gasp) need medical help with these symptoms may be a tiny first step toward changing the tape loop in my brain that tells me that I am on one side of a binary — that I am either a or b, all or nothing, need help with everything or do not ever. There is a middle ground. Until now, I haven’t been able to acknowledge that.

On Centring Caregivers in Disability Discourse

It’s really off-putting when a group of disabled people are trying to have a conversation and a caregiver butts in with “you’re wrong. I know, because I care for someone with such and such a disability”. This makes me squirm. Even worse are those disability organisations or charities that have only parents and caregivers on their boards. “Oh, but it’s all right, my brother has this condition. In fact, we all have family members with this condition!”

It’s troubling enough that there are so many such organisations out there that just don’t have anyone who actually has the disability concerned on their boards – it’s as though we can’t speak for ourselves or have unique experiences people who don’t have our disabilities can’t relate to or advocate about! – but that’s not directly what I want to talk about today. I want to talk about who gets to run conversations about disability and who gets to run the narratives. All too frequently, abled caregivers and family members are centered in conversations that really ought to be run by and focus on disabled people.

The thing is, abled caregivers and family members, while pretty involved in the lives of those they are caring for, have their own perspectives, which is great. But treating those perspectives like substitutes for those of disabled people themselves makes me really uneasy. So when the perspectives of disabled people get pushed out because carers are brought to the forefront – in legislating, in daily conversation, in interviews – for me, that’s a clear example of ableism run rampant. Because it seems like those in charge think that disabled people aren’t worth listening to or are incapable of informing their own opinions.  The dominant narrative is that abled people are better worth listening to, and I get sad when abled carers and parents just don’t seem to realise that they’re dominating conversations at the expense of disabled people. (It reminds me of those times when men start talking loudly about feminism and everyone else in the room has to keep quiet, is denied a chance to speak.) And “advocacy” of disabled people shouldn’t be at the expense of disabled people.

Of course, it’s usually particular kinds of caregivers who get centred – who centre themselves – in these conversations: abled ones. As ever, it is those with multiple roles who are pushed to the margins, because their existence is held to be just too complicated to deal with. I think acknowledging disabled people who are also caregivers would be a really good start to decentralising the place of abled caregivers in these conversations. Moreover, acknowledging the multifaceted nature of experience brings out the nuance: we really have to engage with the dynamics of different people’s situations here – what are the power dynamics like when you’re both in a position of power and disabled? how do these conversations apply to you? – rather than defaulting to listening to abled parents and caregivers.

Now, I’m not saying that abled caregivers and such should have no place in conversations about disability and ableism, you understand: I’m saying that such folk have dominated conversations about these matters. There is a place, it just shouldn’t be a place that replicates the hierarchies present in society already: hierarchies around who gets to speak, who gets to do the representing. The effect of this – and you can look at a range of newspaper articles or documentaries or whatever you please – is that disabled people get silenced. The effect is that, more often than not, it becomes all about portraying the caregiver as angelic and the person cared for as a burden they have kindly taken on.

And that’s not on.

[Cross-posted at Zero at the Bone and Feministe]

How are you?

I tend to tense up when I hear that question. What I frequently want to say is, ‘I am not doing well at all. I’m exhausted, I’m stressed, there’s so much drama in my life. My legs hurt and and I really need to sit down. I’m just struggling.’ But that’s not what many people want to hear. In fact, lots of people will stop in their tracks when you give them an answer other than, say, ‘fine thanks’ or ’well and you?’

Sometimes people are asking as they genuinely care how one is. Frequently, however, enquiring after someone is merely a social nicety. And you can’t always tell the difference! That something so nice and positive and supportive has become a formality is pretty sad. And there are added layers of meaning for disabled people.

This question, concerned with health as it is, can be a point of tension for PWD. Because we’re often not fine, and that’s generally not something abled people want to hear about. Not that many people want to know what’s really going on in other people’s lives anyway, all that is deep and dark and personal, but this is particularly true for disability. Disability is held to be unpleasant, not something you want to hear about, and also it’s considered kinder to avoid the subject for fear of distressing the poor disabled person.

I was having a chat about this recently with the lovely Dorian of Dorianisms. He pointed out that ‘how are you’ as polite and meaningless is particularly baffling to his non-neurotypical self. ‘I respect the value of polite, ritualized words. But that one in particular is odd, b/c it takes the same form as an honest inquiry after well-being could. And I don’t know how to tell the difference.’ It’s a matter of having to have learned this social script and then finding out that it doesn’t always mean what one has been told. That’s confusing, and it’s more unnecessary work the neurotypical world requires of non-neurotypical people.

I’m not saying that being asked how one is can’t be a nice experience, or be conducted with nice intent. I can really appreciate my friends asking about what’s going on for me, it’s lovely to be thought of. It’s just that there are so many things going on here.

A couple of years ago, when it got too much, I was in the habit of just talking at people who asked me how I was. I just threw lots of words at them so that they wouldn’t realise I wasn’t answering their question. At present, a favourite response of mine to ‘how are you?’ is ‘because I was born, and I continue to be alive. What kind of a question is that?’ Yes, I know, I have an odd sense of humor. Sometimes when I’m feeling poorly I answer properly, but then I get the looks of disconnection or pity; I’m not sure which is worse. And if I respond with a chirpy ‘fine and you?’ it sounds odd if my health issues come up later in the conversation. I worry that the incongruence might make some think I’m faking, and there are enough people who think that of chronically ill people already! I don’t like to lie, and I really don’t like being expected to lie in order to keep things smooth and social. Alternatively, I frequently wonder if some people aren’t asking me out of concern or even habit, but for gossip fodder. I don’t like my personal experiences to be open to that sort of thing. And sometimes I just don’t want to talk about how I am. I have so much to deal with that I’d rather not think about it while I’m trying to be social, even as ‘how I am’ is making me struggle to be social.

I was in the habit some months ago of not asking PWD ‘how are you’ lest they think I was being intrusive about their health, and now I am thinking of moving back to that. In any case, I am trying to remember to be conscious about how I say it: to mean it when I do, using appropriate phrasing for that particular person, and to refrain where it’s not welcome.

The prevalence of this social custom is simply another nod to abled preferences at the expense of our own. I’ve got a lot more reason to keep my mouth shut about my private medical concerns than an abled person who has just had the flu. If we don’t participate satisfactorily in this seemingly (to abled people!) perfectly innocent and polite cultural norm, it’s another manifestation of our being difficult; we’re bad cripples. All in all, this trifling pleasantry can be pretty loaded. And we’re often expected to share, and only the right about, on abled terms.

Related: Ask Me No Questions and I’ll Tell You No Lies and the comments of Some snappy answers for your stockpile.

[Cross-posted at ZatB]

Invisible Identities, Part 3: The Privileges and Pains of Passing

Previously:
Invisible Identities, Part 1: Invisible to Whom?
Invisible Identities, Part 2: The Default Human

Note:

I’m told that in the American context, when speaking about race, the term “passing” is most associated with black people due to a pretty loaded history. This is not the case where I live, simply because that’s not the history we have with the term. As such, when I speak of passing race-wise, I am not speaking only of light-skinned people of African descent who can do so. I realise that this post could therefore be a somewhat uncomfortable read for people in that context, and am putting up this note to therefore hopefully address some of that discomfort.

It’d probably be a good idea to read the previous posts in this series if you find anything else in my word use or context confusing, especially as many of the points in this post build on the previous posts.

Comments that say it’s wrong to try and pass, or conversely that someone ought to try and pass, will not be tolerated. Either way attempts to take away something of someone’s choice, experience, decision making. How one negotiates one’s own life, how one chooses to deal with all the oppressions on hir back, is hir business.

Being able to pass is a privilege. Passing privilege means that others don’t grab my body or assistive devices, people I’ve never met don’t look at me with pity or disgust and I am less likely to face intrusive and upsetting questions. Those are amazing privileges that many of my fellows in the disability community don’t share with me. Passing privilege means that I am not watched suspiciously in stores, negative comments are not made about my features, white people feel comfortable to interact with me and strangers do not expect me to act as an example of what all people of my background are like. Those are incredible privileges that many of my background do not share.

First up, we must address the nature of passing. Sometimes it is active (one chooses to pass) and sometimes passive (one is passed). Sometimes it’s an interaction of expectation and experience, habit and circumstance. One cannot untangle one’s own efforts to pass or to not from the point of the idea of passing. That is, whether one passes or not is dependant on the outside observer. The whole idea of passing hinges not on what the (non)passer does, but on the observer’s response to that person. There’s an extent to which one can control it – and people have developed quite some techniques – but it’s not always a matter of choice as to whether to pass or not.

There’s a friction between passing and solidarity with one’s group. Those who can pass as being a member of a dominant group may miss out on many experiences and forms of discrimination that are held to be facets of that group’s commonalities. One of the main problems with passing is that in doing so an inequitable system is being held up (by those who pass others, by those choosing to pass). This is to say that passing supports the idea that equality, better treatment, is gained by melting into the dominant group. This is of course true, as is evident in, for instance, shifting definitions of whiteness; but one shouldn’t have to lose their own identity to the “good,” dominant identity in order to be dealt with well. We should work not until identities disappear but until they’re all okay to have.

That burden should be placed on those making the assumptions of – enforcing – default identities, not on the passers. Passers frequently report hostility from within their own groups, and accusations of not really being a member of their community from all sides. No one is less a member of the group for other people’s perceptions and it’s incredibly offensive to suggest otherwise. Passing is not always a choice; when it is, it’s presumptuous to resent someone for that and just outright wrong where safety is involved. How one deals with one’s own experiences of oppression is one’s own concern.

Being able to pass really messes with my head. I’ve frequent bouts of intense guilt about it, and I feel sick when people in my communities admire me for the features that make me more likely to pass (‘look at her beautiful skin.’ Increasingly I need to get the nearest bathroom and scrub and scrub where they grab my arm). Sometimes I don’t feel quite real or as though I’m cheating, an intruder in someone else’s identity. With regard to being disabled, this has some nasty consequences: in the past I’ve not gotten needs met, either because I can’t bear to out myself or because someone doesn’t quite think I’m truthful. Passing doesn’t mean I’m not struggling to remain standing while we’re talking. I struggle with passing and being passed. Sometimes I try and do it to feel safer (never safe) and lose my integrity. Sometimes I am passed, and it’s a mix of delight and loss and damage. Whatever I do, it’s never enough, I’m never enough.

Now I just mostly let people think what they will. The glowing effects largely disappear once I give off too many cues. Because so much of my identity, experience and expression is tied up with those of my identities that are invisible, the effects are frequently fleeting.

Being invisible doesn’t mean I face no discrimination but that I face less individualised discrimination in many contexts. Looking like I do has not prevented, upon the acknowledgement of my identity, looks of disgust, offensive remarks about my family, having to listen to racial hatred. It has not prevented the fear in me, the way I have not felt safe since I was a little girl. It has not prevented that I modify my dress, my speech, my movements, my stories in order to appear as “normal” as possible, just like anyone else trying to not face the wrath of whiteness. Attempting to invisibilise difference is hardly restricted to those of us who can pass.

The thing is, I’ve done everything. I’ve been loud and proud about my invisible identities. I’ve done my best to make them disappear. I’ve allowed myself to be passed, I’ve actively worked to pass. I’ve just been myself, I’ve made my identities explicit. At the end of all this anxiety and modification and thought and care, one thing remains constant: it’s the perceptions and actions of people in dominant bodies that count. When I pass, there’s still the weight of many manifestations of oppression on my shoulders. And irrespective of whether I pass or not, people outside of my groups still get to determine how I am treated and how I am perceived. There is no way to win.

[Cross-posted at Zero at the Bone and Feministe]

Invisible Identities, Part 2: The Default Human

So, I’ve talked about how the notion of the invisible identity is problematic, particularly through the framework of my personal experiences of being “invisibly” disabled and non-white. Now to the flipside of invisibility.

Certain characteristics exist in the societal consciousness as default traits. That is, a person is a man unless they’re pointed out as a woman (how many times have we all heard ‘woman lawyer’ or similar?) Disabled people are unexpected, out of the norm. The coming out process doesn’t exist for straight people, because everyone’s assumed to be straight until it’s made clear they’re not. While non-white people are described according to their race (‘the Asian man’), white people are described according to specific physical characteristics (‘the blonde man’). These are the default humans, and we are assumed to be so unless we are otherwise. It’s a strange phenomenon, really: these identities are represented so often, in so many contexts, that we don’t even describe them anymore.

It’s also curious because so few of us are that default human, white, cis, abled, middle class and so on. The default human is really quite far from being usual.

What the invisibilisation of privileged characteristics does is to invisibilise the privileges that go along with them. Straight people had to be told that they, like gay and lesbian and bisexual and pansexual (and more!) people, had a sexual orientation too, rather than just being “normal”. Race is so often approached as something only non-white people are concerned with. Abled people are regular people, and disabled people are wrong and bad and tragic. (If you think that disability is some kind of flaw located in an individual, please learn about the social model of disability.) It’s the reason for the assertions that ‘cis’ is an insult rather than simply a neutral term used as a replacement for ‘normal’ in describing non-trans people. There has been a great deal of reluctance and resistance on the part of the privileged to put a name to what they/we are. This is because doing so legitimises the idea that they/we exist in a specifically privileged state rather than just being the default, the norm. You name the thing, you make it real.

Here’s what I guess I’ll have to call a worked example, for lack of a better term. I’m told it’s particularly rude in the US to describe someone in terms of race. I’m sure you’re familiar with why “colourblindness” is a bad approach to anti-racism, but it’s worth recapping. “Not seeing” race – oh, hello, there’s that visuality thing again – does not make us all happy and post-racial. “Not seeing” race just makes sure we’re all launched right back into default white culture, because not mentioning difference erases our histories. And of course white people’s differences aren’t mentioned, because their cultures are assumed as default. When white people acknowledge their cultures, that is: there’s a tendency for white people to say they’re uninteresting, or they don’t really have a culture, because they do not perceive that their cultures are everywhere. All of which is not to mention that using “colourblind” in relation to anti-racism discourse appropriates the experiences of people who are actually colourblind. So erasing difference just reinforces racism, where we could be acknowledging difference as present and right and ours. The default human idea doesn’t work because none of us are. And it tries to make most people not exist.

Again, this has some icky effects on those of us who can be read as having an identity we don’t. Because I can tell you, being read as something you’re not? Can hurt like anything. I have experienced having my background erased as intensely threatening and hurtful. This often takes place in white spaces in which white people feel okay being racist because, hey, it’s only us white people here, right? I have had to listen to people question whether it’s better to be disabled or dead, and have sat through it, terrified, because these people, who previously seemed perfectly charming, are confidently questioning whether my community deserves to exist. And at the same time as I’m being misread, I have guilt, because sometimes I cultivate a white, abled image for safety or comfort.

Knowing how harmful default assumptions have been to me, I am trying to not assume them of other people. This is difficult in the extreme, because we are so trained to make assumptions about people’s identities. Something I’ve heard a bit from people who don’t fit the gender binary is that if you aren’t sure, just ask. I’ve not yet brought myself to do so (and I’m sure far from everyone would be comfortable with that) and rather wait for cues as to someone’s identity. Being uncertain is both frustrating and liberating: boxes aren’t just for sorting, they’re for boxing us in. A little ambiguity makes things more interesting, and less painful for those of us with invisible identities.

But now that I’ve made a good effort to stop assuming default status, I’m trying to stop assuming identity more generally. I’ve taken to describing white people as white, just to point it out and sometimes observe the cogs turning in someone’s head. I’ve mostly overcome trying to fit people into boxes of queer or straight. (Except for the cute ones.) I realised it wasn’t so important that I figure out someone’s identity if I was just having a chat with them in a line or some such. If I don’t need to know, I don’t need to know. Someone else’s comfort is more important that the satisfaction of my curiousity. This is particularly true for the people who don’t fit into boxes so neatly, or for those who wish to keep their identity under wraps. For instance, I myself am regularly nervous about being outed by careless friends about my disability status, because I often can’t afford to lose the credibility and respect passing as abled gives me.

I think it’s an interesting exercise to try and perform. If we’re not so certain anymore, how do we relate to each other? I think a good thing about this lack of certainty is that it requires you to relate directly to a person, discover their identities, rather than you putting assumptions onto them and deciding their identity for them. So while I’m still likely to read that person waiting in line with me as a white, straight, abled woman in her late thirties, sometimes I catch myself, or look back and think, maybe not. Maybe humanity is just more complicated than that.

[Cross-posted at ZatB and Feministe]

“Bad Cripple”

Last month, I went to a non-partisan Campaign School, where women learned the nuts and bolts of running a winning campaign for political office in Canada. We all said a bit about ourselves, and I stood up and introduced myself as a Disability Rights Activist.

I spent the rest of the weekend being told how “Bad Cripples” are ruining the system for everyone else, and how every problem that I discussed, from how low disability-support payments were to how difficult it is to get around the city with a wheelchair, was caused by That Person.

You know That Person. The one Everyone Knows who doesn’t have a real disability. They could work – of course they could! – they’re just in it to scam the system. This One is bad because whatever he claims about his disability, it’s obviously exaggerated because no one could be in that much pain. That One is bad because she decided to move to another province where the disability support payments are better – obviously she’s just in it for the money.

Regardless of where someone fell in the political spectrum, they felt it very important that I knew that it wasn’t the government’s lack of support for people with disabilities and their families, it wasn’t the surplus of societal barriers, it wasn’t even their own individual fears of disability that caused any financial distress. It’s those Bad Cripples who scam the system and totally ruin it for the Good, Deserving Ones.

People tell me anecdotes about Their Friend (or a Friend of a Friend) who totally confessed to scamming the system, or they tell me about how Their Friend isn’t really disabled, and they can tell, because of X, Y, or Z.

I’m going to confess something to you: According to the way a lot of people define “Bad Cripples”, Don and I are really Bad Cripples.

I’ll start out with the comments. Both of us have very bleak senses of humour, and both of us (me especially) say some of the most awful things. These include things like “I just married him for the disability cheques,” “Damn it, I should have lied and told everyone your Cancer spread so I could get extra time to finish my assignments,” “Oh, Don fakes not being able to talk very loudly so he doesn’t have to deal with the Student Loan people”, and even “Oh, the wheelchair’s just for show.”

You might be thinking “That’s obviously you joking around, Anna! No one really thinks you’re serious.”

Yes, yes they do. All the time. I’ve been talked to by professors about my joking comments about Don’s Cancer, and asked not to make them in front of other students. I’ve gotten really angry @replies on twitter about some of them. I have an email I can’t quite get myself to delete that’s all about how I’m a horrible wife who’s just using Don for his money.

I have no doubt that people have said, either to you or someone you know, something that sounds like they’re just gaming the system, including a breezy “Oh, I’m just gaming the system.” But you have no idea if they’re serious or not, or what their circumstances are, or how much pressure they’re under, internally or externally, to “pass for normal”.

The second reason people think of “fakers” is the “I know stories of people who don’t have real disabilities and they get all this financial support!”

Here’s the thing: I don’t have an obligation to tell you what my ability status is.

My ability status is between me and my doctor. I have made the choice to share it with a few friends, and my husband. I don’t have to tell you. I don’t have to tell my teachers. I don’t have to tell the pharmacist, the person who’s demanding I justify my tax-status, or my landlord. I have not discussed it with Student Accessibility Services on campus. I have not disclosed to the people on any of the committee meetings I’m on. I didn’t tell anyone at Campaign School.

Because it is none of their business.

I do not owe it to you, or anyone else, to explain why we’re raking in those big disability cheques.

I also want you to consider that you don’t always know what disability will look like.

You can’t tell by looking at my friend with the mental health condition that she tried to climb out a third floor window and jump because she couldn’t take the idea of another day at her job, but you can probably tell she isn’t working right now while she recovers from the experience. You can’t tell by looking at my friend that she was bullied so badly at work that she has panic attacks whenever she thinks of stepping foot in the neighbourhood of her former workplace. Until Don got his cane, and then his wheelchair, lots of people wanted to know why he wasn’t working – aren’t people who have mobility issues always in wheelchairs?

I know people who tell me “Bad Cripple” stories are trying to be helpful. They want me to know that they understand how difficult it is, and that if it weren’t for all those Bad, Faking Cripples out there, Don and I wouldn’t be living entirely off the largess of his family and my scholarship money. (The government expects that I should take out student loans to pay for Don’s medication that he needs to live. Oh goody – overwhelming debt in exchange for a husband who lives! Thanks, Nova Scotia! You continue to be awesome. Yes, the big disability cheques comment was a joke.) What I think they don’t want to do is question why it is so difficult. Bad Cripple stories give us someone – a conveniently faceless group that Doesn’t Include Us – to blame.

I think a lot of people are going to rush to tell me stories about how this all may be true, but they totally know of this person who is totally lying about being disabled. Please consider whether or not that anecdote will contribute to a conversation, or just remind people with disabilities that they’re viewed with suspicion and have to prove their status to you.

Power and Responsibility

An earlier version of this post was published in July, 2009.

When I mention that Don has a homecare worker, and explain what that job is, I often get this question:

“Why don’t you do all that stuff for him?”

This touches on something that I’ve referred to a few times, and that’s the idea that it’s totally okay (admirable, even!) that services for people with disabilities be offered by volunteers. It gets into a lot of complicated stuff.

For example, Don’s homecare worker does things like makes sure he is clean-shaven once a week, washes his hair carefully, and does some of the stuff he needs done for his back, which suffers from a lot of sitting/lying related issues, like heat rashes and sores. She’s there for about an hour or so.

What she does for Don is a huge deal in terms of his personal hygiene. All those little things that allow him to be “acceptable” to our neighbours take energy, such as having clean hair and a neatly trimmed beard. Before homecare, Don would often go weeks, if not months, without a proper shave, and look very scruffy and unkempt. But it would be a decision for him – does he shave today, or does he make a meal? There wasn’t enough energy or concentration to do both.

The question of why I don’t do these things has a few assumptions under it. First, it implies that, because I’m his spouse, I should be in the caretaker role. I should be making sure all his personal hygiene needs are taken care of. There’s a power imbalance there that makes me uncomfortable. It puts me in role as adult, and Don in role of child, and this is just not acceptable.

The other thing is part of why this volunteer thing bothers me. Don’s personal level of comfort should not depend on my energy levels. It shouldn’t depend on my mood. It shouldn’t depend on whether or not I’m angry at him today, or I’m too busy, or if I’m home.

Right now, it depends on whether the woman who is paid to come to our home and do these things shows up. If she calls in sick, there is someone else who will come in. I know she has a degree in nursing, focusing on homecare for people with disabilities. I know she’s a professional, who has been taught the issues around disability and privacy, around personal autonomy, and around sexuality and disability. I know the process we will go through if either she or Don does something sexually inappropriate. I know the appeals process if she threatens him or he threatens her. I know what will happen to Don’s care in those situations. More importantly, Don knows what will happen in those situations. He has personal autonomy.

Don’s health needs shouldn’t be dependent on me in any way, because that’s not safe for Don.

In my experience, Feminism tends to have discussions about caregiving focusing around the fact that caregiving roles fall predominately on women, and lead to things like “the second shift”, or caregiver fatigue, or even directly impact women’s abilities in the workplace. (“I can’t work late because I need to get home now.”) I think this is an important thing to discuss, but I don’t think it’s the only part of the caregiving equation. I think we, as feminists, need to also talk about the power inbalance that comes in when one is a caregiver for a spouse or parent that has a disability.

As well, we rarely talk about what happens when the role of caregiver falls on women with disabilities? What happens to that allotment of spoons then? What view do we have of women with disabilities if their children aren’t “properly” cared for? If some other loved one isn’t getting everything they need? What happens to the caregiver/second shift issues then?

I think feminist discussions about caregiving and responsibility need to broaden out to include these complicated issues.

Limits

You keep telling me to accept my limitations, so why don’t we talk about yours?

Why can you only think of disabled people as substandard, tragic, less than whole? Why can’t you see us as parts of your life, community, family, lovers, friends, world? Why must we be super crips, stoic heroes, silently suffering? Why must we be a burden on our families, better never born, better have died in the accident that made us so? Why must we be inspirations overcoming the odds? Why must we be not trying hard enough, making a fuss, getting unfair advantages?

You need to approach me as limited because you need someone to be less than you. It is a relief to have someone to compare yourself with and think that you’re doing better than me, at least.

I don’t experience my world as limited, though others may find that a useful construction for their experiences. I have my things I cannot do, I have things an ableist world prevents me from doing, and I understand them better than you ever could, so your focus on them is strange to me. Do you think I don’t know, I need to be told, I am not constantly reminded as I go through the world? Don’t you have things you cannot do? You just want to set aside mine to surround with your pleasure-pity, your ‘so glad it isn’t me,’ and the world allows you to.

Those are your limits: you cannot understand people like us outside of your framework. You are trying to limit us with your ideas of who we can be.

I will not fit your limited narrative. I tell my own story, giving shape to my own experience.

[Cross-posted at ZatB]

This is what an activist looks like

[Hi folks! I hope you’re enjoying FWD. Thought I’d start my time here with some meta activism.]

I’m disappointed when I hear activists prescribing what other activists ought to do. I’m surprised it doesn’t all come from rich, white, etc, etc, men, and here’s why.

Traditional forms of activism are often not possible or difficult for a given individual. Is a single mother going to go to a rally for paid maternity leave when she can’t find someone to look after her kids? Is someone with chronic pain and/or fatigue going to take kindly to being told they ought to attend a protest? Is it reasonable to expect that everyone has the time, energy, resources and know-how to do research or a survey? Is someone struggling to get by going to have the money to pay to get into a event? Is the crowded, loud meeting held in a room up a flight of steps going to be accessible to everyone?

You see, if you’re claiming to be progressive, but your organising unthinkingly excludes chunks of vulnerable and oppressed people? You are not being progressive. And if you are nevertheless insisting that some other form of activism is not a proper one? You are a douche. If you’re low on resources, and really trying to include folks, that’s one thing. But if you think you have the one true way to save the world, that is quite another.

What I am suggesting is that there are a lot of forms of activism in the world, and looking down one’s nose at some of them is detrimental as well as being offensive to those of us working hard to make valuable contributions in any way we can. It goes beyond ‘well, everyone should do what they can’. It’s not even a case of ‘if you can only contribute a little, that’s fine’. It’s not even just about the privileging of particular modes of contribution. It’s this: I do not know where anyone gets off saying that what another person does to heal the world is less than proper.

Now, I sign petitions and write letters all that sort of thing. I buy badges and do bakesales, too. (These forms of activism have various levels of “proper activism” quotient attached to them. Discussion questions: How much do they tie in with what you do? How traditional do they seem to you?) I do traditional activism – sometimes. I am disabled, and it is not always physically possible to do so. I’ve never attended a rally, for instance (see meloukhia’s related post). Here is a short list of some forms of activism in which I engage that traditional thinking doesn’t call activism:

  • I call out people when they use “ism”-based language.
  • I attempt to be an ethical consumer (and frequently fail, but I’m getting better! And it’s a feature of economic privilege that this form of activism is even possible for me).
  • I try to centre marginal people/experiences/voices in any given situation.
  • I engage with the world, and learn as much as I can about what I can do to make it better.
  • I look into myself and work at unravelling oppressive ideas I have taken on as my own.
  • I assist those around me with their activism where I can and should.

We should be rethinking traditional methods of activism, because progress means rethinking the traditional to make sure we have the very best for ourselves and the world. Even where we’ve assured ourselves we’re progressive. We need to keep thinking, keep examining, not only the world but ourselves.

Because it’s not just pressuring governments that’s important, as important as it is. Central to my activism is what I do right here, right now, in my life and my communities. When it comes down to it, progress is not only in the big sweeping changes. It’s in our souls. It’s in relating to each other with kindness.

I just don’t get it when people say that blogging isn’t real activism, because it is a big deal to this activist. I’ve reached and been reached by so many people, sharing lives that would never otherwise touch! Because the Internet is not composed of individuals shouting into the void. The Internet is composed of people, and we use it to direct attention to issues and petitions and all sorts. And we take what we learn with us to the offline world. Even if this wasn’t so, there is important work to do inside our minds. We have to tease out the oppression we’ve stored in ourselves. We have to understand and learn. Blogs have given me tools to put language and frames to my experience. For instance, reading the work of my co-bloggers amandaw and Lauredhel gave me what I needed to talk about my experiences as a disabled woman, and now we’re doing activism together. You know. Writing isn’t useless. Writing is a good part of humanity’s process and progress, how we connect, how we relate to ourselves. Whether you’re writer or reader – and how often those roles intertwine in a sphere such as blogging! – writing is not just valid, but vital.

[An earlier form of this post was published at Zero at the Bone.]