Tag Archives: invisible disability

Recommended Reading for 12 November, 2010

Gentle reader, be cautioned: comments sections on mainstream media sites tend to not be safe and we here at FWD/Forward don’t necessarily endorse all the opinions in these pieces. Let’s jump right in, shall we?

Sydney Morning Herald: Why I’m not in the queue for the disabled loo by Liz Ellis.

There was a debate over policy and procedure but ultimately it came down to human conscience, something that I am incredibly appreciative of. But should I really have to rely on human conscience overriding policy and procedure?

The Globe and Mail: The sound (and sight and feel) of music for the deaf by Jill Mahoney.

Frank Russo helps make music for the deaf.

Working with a team of researchers, the Ryerson psychology professor invented a chair that allows deaf people to feel music through vibrations. He also works with both deaf and hearing musicians to compose music that focuses on vibrations and vision rather than sound.

The Los Angeles Times: Mentally ill prisoners get a second chance by Lee Romney.

Mental health courts are operating in 29 California counties, helping offenders and reducing crime in their communities.

As I mentioned a few days ago, I’m writing for the NSW Don’t DIS My ABILITY campaign at present. Here, have some tacky self-promotion!

…and I’m feeling good

This will be a bit of a shock if you’re invested in disabled bodies as broken and horrible and unlovable, so brace yourself.

I love mine.

Who Gets to Speak?

I’ve been thinking about this man ever since, and the way he read me as abled. But mostly I’ve been thinking about assumptions about the kinds of people who do disability advocacy. Namely, there’s a strong perception amongst the abled public that people with disabilities are unable to advocate for ourselves. Supposedly, our abled family and friends do it all for us.

That’s all for this time. Send your links to recreading[@]disabledfeminists[.]com. Let us know if/how you want to be credited.

Politicians care so much they make their message nonsense

Like a lot of people, I signed up for automatic emails from the various political parties in Canada. Because I live in Nova Scotia, the main federal parties that run here are the Conservative Party, the Green Party, the Liberal Party, and the New Democratic Party (often just the NDP). (If I lived in Quebec, I would also have the option of voting for the Bloc Québécois federally.) I dutifully signed up for all four of these parties, so I could be informed about the issues they think are important.

One thing that seems to be very important: YouTube videos! Each of the parties maintains their own YouTube channel, and they stock these channels with videos. Every week or two, I get another email from a political party that really wants my vote (or at least my money), and they often include links to the YouTube channel, or even embedded video. And every week or two, I respond like clockwork, asking them to please provide captioning and/or transcription of the video.

So far, the response has been silence.

I wonder if the reason for this is simply because there’s the new Auto-Captioning service at YouTube, which attempts to automatically subtitle a video a video. Surely this will provide a good working set of subtitles, right?

Ha ha. Ha ha ha.

In alphabetical order, let me show you what the YouTube auto-captioning displays when I try to watch political messages from my current or potential political representatives:

The Conservative Party of Canada:

An image description appears below

Image: Screen capture of a YouTube video, with subtitles that read “You don’t think that’s a whole group called american this country and you have to decide”

Actual quote: Voice Over: “Adopted Britain as his home. Called America his country.” Ignatieff: “You have to decide….” (This advertisement is discussing Liberal Leader Michael Ignatieff’s past.)

Here is leader of the Green Party, Elizabeth May:

See below for image description

Image: Screen capture of a YouTube video, with subtitles that read “we’re on Friday evening breeze through across Canada will gather”

Actual Quote: Elizabeth May “…Where on Friday evening Greens from across Canada will gather.”

I will totally admit the Green example is not as terrible as the others. The Greens don’t have a lot of advertising at the moment. (Non-Canadians, this is in part because they’ve not got an actual member in the House. I count them as a national party because they run in all 308 Federal ridings, and May participated in the Federal Leadership Debate.)

The Liberal Party of Canada:

Description appears below the image

Image: A screen cap from a YouTube vid. Caption reads “the prime minister’s their lives for stroger’s we have a garden”.

Actual quote: “… The Prime Minister is there to inspire us to do our best, and we have a guy who….”

The New Democrats:

Image description is below.

Image: A YouTube screen capture. The caption reads “costs are skyrocketing so why does is Stephen harper dead”

Actual Quote: “Heating costs are skyrocketing. So why doesn’t Stephen Harper get it?”

This is what I wrote in one of my last emails to my MP about this issue:

I know disability and accessibility are things you care about too, Megan, so I hope that you will pass along my concerns to the NDP Leadership: Transcribing and subtitling/captioning of video and audio content is an accessibility issue. Providing both a transcript and subtitling allows for more Canadians to be able to access the message of the NDP. As well, it shows a commitment to accessibility and to including Canadians who prefer or require transcripts and subtitling, for whatever reason. As this is something I believe the NDP values, it would be helpful for the party, at all levels, to provide transcription and subtitling for all the videos that they produce.

Of course, subtitling your video (and providing a transcript) are not only for people who are d/Deaf or hard-of-hearing. They’re also for people who have audio processing disorders, who have difficulties understanding spoke English, who don’t want to turn up their volume, or even don’t have speakers or headphones on their computer. They’re for people who just want a transcript or subtitling because it makes their lives easier today. (For example, I have an ear infection and subtitles are the order of the day.)

Every political party in Canada “cares” about “the disabled”. They really do. Each one has a little subsection of their website dedicated to explaining how they “care” about “the disabled”.

I think it would be awesome instead of telling me how much they cared, they’d show it. And one way of doing that would be subtitling their ads, so everyone can know what their message is.

Recommended Reading for October 26, 2010

firecat at Party in my head (DW): How To Be Sick

I went to this talk because I have chronic health conditions that affect my mobility and energy levels, and I am a caregiver for my mother, who has Alzheimers. I’m a Buddhist and my study of Buddhism has helped me work through grieving over these things and building a life around them, and I wanted to hear a talk that specifically addressed how Buddhism can help a person deal with chronic illness. I figured that I already knew a lot of what she was going to say, but I thought I’d learn a few things and find out that I’m already doing a lot of what there is to do, and that would help me feel more confident.

beautyofgrey at The Truth That Came Before (DW): On invisible illnesses and harmful judgment

Our illness is invisible. At first, even I did not want to see our illness. I wrote it off as “discipline problems” or “unresolved anger” and resolved to become a better disciplinarian, better parent, and to slowly count to ten. I assumed it might be due to changes in our life. Later, doctors did not want to see our illness. Everyone had a healthy weight and height. They wrote it off as “difficult phases” and assumed that the problem resided at home. They asked us to wait a year or two before we considered whether the chaos, aggression, and emotional stress weren’t just tricks before our eyes. Our illness was invisible, because we were not “that bad off”.

kankurette at The Hidden Village of Aspergers: Happy Mental Health Day. If “happy” is an appropriate adjective

I’d always been a melancholy kid. Think Marvin, Eeyore, Cassandra, the Ides of March. I just went along with it. In my teenage years, I had moments where I was suicidal, and I started self-harming at 14, but I just put it down to teenage angst. Depression wasn’t an illess, I believed. It couldn’t happen to me. Even though my mum turned into a wreck after my dad died and spent days in bed, even though she had panic attacks in front of us and seemed to be more temperamental and headachey than usual, even though the doctor gave her pills to take, I just thought she was sad; I didn’t realise she was ill.

K__ at Feminists with FSD: Interesting posts, some time in October

I have a feeling we’re probably going to see another spike in coverage about Flibanserin, (I’m thinking certain feminist websites are more likely to cover it than others, and maybe some op-ed pieces in mainstream newspapers, as well as others) and when we do see it, I can guarantee you it’s going to get real ugly, real fast. Everyone, get your bingo boards ready to go if you’ll be doing any reading on the matter. If you see any new and bizarre arguments about FSD and why no woman, anywhere, ever, needs medication for sexual desire problems ever, in comment sections to the inevitable anti-Flibanserin posts, let me know; we may have to produce a version 2.0 if we keep running into the same old shit again and again.

Lisa at Sociological Images: What is Intelligence?

We often think that intelligence is somehow “innate,” as if we are born with a certain IQ that is more or less inflexible.  These scores suggest, however, that our potential for abstract thought, though it may be located in the biological matter of the brain, is actually quite malleable.

(Note: For a further discussion of the concept of “intelligence” and its history, see kaninchenzero’s AWP post on Intelligence.)

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

Recommended Reading for September 14, 2010

Astrid van Woerkom at Astrid’s Journal: “Exercise For Mental Health!”

Bakker forgets the barriers to exercise that some people encounter. Due to the construction going on, I cannot take walks on grounds unaccompanied anymore. I cannot navigate the busy gym during fitness class. If I want to bike, I need to go on a tandem. I cannot participate in my institution’s running therapy program. None of this is due to anxiety. All of it is due to my disabilities, and the barriers to access that stand in the way.

Spilt Milk at Feministe: Fat acceptance: when kindness is activism

Body shame is a great tool of kyriarchy and we often get it from our mothers first, as we learn how bodies can be reduced to a collection of parts and how those parts can be ranked in order of acceptability. Thighs and bums, boobs and upper arms, back-fat and belly-rolls can all be prodded and critiqued, despaired over, disparaged, loathed. This is often a social activity, too. Who doesn’t love normalising misogyny over a cup of tea and a (low calorie) biscuit while the kids play in the next room?

Clarissa at Clarissa’s Blog: Asperger’s: Daily Experiences

As I mentioned earlier, I have “good days” and “bad days.” On bad days, it becomes more difficult to manage my autism, while on good days I make use of a variety of strategies that make it difficult for most people who know me to guess that I am in any way different. In this post, I will describe the techniques I use on my good days, of which today was one. I remind you that my form of Asperger’s is pretty severe, which means that not everybody who has it needs to go through a similar routine.

Cripchick at cripchick’s blog: the politics of mobility

there are so many times when i feel deep resentment for the mobility that (most) nondisabled people our age have. not physical mobility as in moving your arms, but the privilege of being able to move through the world so easily. never having to ask permission. never being dependent on access their support systems provide. never worrying about where they will stay, how they will get around, or who will hire them if they need cash.

Kim Webber at Croakey: How to boost the rural/remote health workforce? It’s not all about the dollars… [via tigtog at Hoyden About Town]

After a year-long consultative effort, the WHO document proposes 16 recommendations on how to improve the recruitment and retention of health workers in underserved areas.  You can see what they are at the bottom of this post (only one of the recommendations relates to financial incentives).

Finally, this week — September 13-19th —  is National Invisible Illness Awareness Week in the U.S. You can find out more by visiting the NIIAW website.

Dear Imprudence: The Questions You Don’t Get To Ask

A concerned family member writes to Miss Manners:

Dear Miss Manners:

My brother served in Iraq a couple of years ago. He suffers from PTSD and was wounded. The physical wound is not one you can see, but people (family especially) will still ask him what it was like to fight in the war and even go so far as to ask if he killed anyone.

It never ceases to amaze me the way that people feel entitled to information about other people. They love to ask questions about your disability, and when a person happens to be a veteran and has seen combat, one of the first questions that comes up, almost without fail (unless that inquiring person happens to be a veteran or the family member/close friend of a veteran), is whether or not that particular veteran has killed some body.

Have you ever killed anyone?

I just can not fathom having to live with the reality of having lived through that burden, let alone having to deal w/ having to relive any of the emotions attached to that each time a thoughtless person asks “Have you ever killed anyone?”.

The letter writer wants to avoid having to stay away from a family function to keep zir brother safe from such carelessness from other family members, and honestly that breaks my heart. A PWD should not have to completely cut themselves off from friends, family, and other outside contacts to avoid triggering situations, but the reality is, this is overwhelmingly the way that it usually works.

I know for a fact that there are many veterans living in isolation because of PTSD, and yes, several of them are women, because of people who aren’t veterans, who can’t grasp what that must have been like (and not even all of us, as veterans can know what that is like), who can’t abstain from getting too nosy and triggering their PTSD. Why can’t we just have the same conversations as everyone else? Not everything in our lives revolves around our disabilities and our experiences in The Sandbox. Not everything is about the worst thing that has ever happened to us.

I like the way Miss Manners answers this letter:

Can you do this without creating consternation and even more curiosity about his condition?

She cautions the letter writer to caution the family to avoid the topic of war without creating a more awkward situation that might cause the family to avoid zir brother as if he is a ticking time bomb.

[He] will probably tell us about the war eventually, but right now it’s his least favorite topic, and I know he’d appreciate our staying off the subject.

This is the perfect way to describe this.

This is the 60th anniversary of the Korean War, the Forgotten War, many call it. My grandfather is a proud veteran and a Purple Heart recipient. He didn’t like to talk about the war with us, even when I was a shining eyed, curious young girl, who was almost never denied anything she asked of her grandfather. It was painful for him to remember, and the only time I ever saw him reminisce was when we traveled to Des Moines for his unit’s reunion many years ago.

But after I joined the Navy he sent me a letter at my A-School sharing a moment of understanding for what I was doing, and later, when my partner and I PSC-ed to Korea, he sat and talked to us for hours about what he remembered of the country. He told us harsh and sometimes beautiful stories of his memories. He told his of his marching from Pusan all the way to far North, of being picked up by Navy ships, transported back to Pusan and doing it again, after salvaging boots from the dead to cover their own bleeding feet. He tells it better, and I hope to get it recorded the next time I see him. But he told it to us in his own time, when it didn’t hurt him anymore.

I remember when The Kid’s Tae Kwon Do instructor told us of his memory of being a child during the war. A child in her class said that he was too young to do something or another well. The Master told us a story, of being eight, and of being held by his mother in a drainage tunnel and being told to not make a sound while North Korean soldiers ran over head. He was able to barely breathe, soundlessly, and stand against the side, like you see in movies, as they flashed their lights looking for people. He shared that story with us freely, and I remember the look on his face, as if he could still feel the chills of fear, like he was back there for a moment, but stronger now, sixty years later.

We have no right to ask them to regale us with the details of the horrible things they had to do to get by, to make a living for their families, to live, all because they were told it was the right thing to do. Or because they had to survive. They had a moment to think, but they have a lifetime to live with that decision.

People who live through wars will tell their stories when they are ready, because the pain will give them a moment of release, it will subside for a moment, or forget to pound them with the aggressive flashback or terror.

We, as people who have never lived through that, have no right to inflict that upon them.

Recommended Reading for June 1, 2010

fiction_theory (LJ): The internet IS real life

The problem with impeaching someone’s anti-racism based on attendance at a specific march or even public rallies and protests in general is that it assumes that a) attending such events is a more real, valid, and important means of expressing anti-racism than any other means, specifically online and b) that attendance is a feasible option for everyone.

Marching at a rally or attending a protest is all well and good, but it’s not something that is an option for everyone. It’s quite ablist to ask such a question as though the privilege of being able to attend excludes the antiracist work of those who use other venues.

Mattilda at Nobody Passes: Closer

Somewhere between sleep and awake, a new day and last night and tomorrow, like they’re all in a circle around me but I’m somewhere in bed where I can almost read the sentences except they blur away from me, and I keep thinking maybe sleep, maybe this is more sleep except I don’t know if I want more sleep.

thefourthvine (DW): [Meta]: The Audience

I will not bring up my disability, because I don’t talk about it here, except to say that if that part of me appears in a story, it will be as either a clever gimmick (and a chance for a main character to grow as a person) or a sob story (and a chance for a main character to grow as a person). (No, there will never be a main character just like me. Most of the time I think that’s normal, and then I look at, say, SF and think standard-issue straight white guys must have a whole different experience on this issue. How weird would it be, to have basically all mainstream media written for you like that?)

Ian Sample (at The Guardian online): Bone marrow transplants cure mental illness — in mice

The team, led by a Nobel prizewinning geneticist, found that experimental transplants in mice cured them of a disorder in which they groom themselves so excessively they develop bare patches of skin. The condition is similar to a disorder in which people pull their hair out, called trichotillomania.

lustwithwings at sexgenderbody: Do I Owe Everything I am to The Internet?

Despite their lack of a body, my friends are still quite active in the world of Social Networking which acts on the physical world in much the same way things on our mind do. The contents of the Internet affect the physical world through many of the same processes as the contents of a mind, yet the contents of the Internet as a public mind can affect many more minds, and many more bodies than a private mind.

Recommended reading for May 4, 2010

RMJ: Disability and birth control, part 1

Widespread (rather than individual) centralization of birth control in feminism alienates and marginalizes their already problematized bodies: trans women, intersex women, older women, women with disabilities that affect their reproductive system, asexual women, women who want to get pregnant. Not to mention the loaded history of otherwise non-privileged bodies with birth control in light of the eugenics movement.

Eugenia: Siempre eqivocada

The fact is that, with regards to medical care, the old customer service adage is reversed: if the customer is always right, in Bolivia, the patient is always wrong. In Bolivia, where higher education is less of a universal right than a luxury for the few, poorer, uneducated Bolivians are taught to treat doctors and other professionals as their superiors.

meowser: BADD 2010: The Total Erasure of Partial Disability

In order to “make it” at anything I thought was worth doing, you had to be willing to do some serious OT, put in the extra time, go the extra mile, get that extra degree while still working full-time, put your nose to the grindstone. In other words, prove you weren’t just some lazy slacker who didn’t want to work. And I knew I…just couldn’t. And I felt terrible about that, especially when I got into my 30s and realized that all those overworked, underpaid copy editors (and other people who had done the nose-to-the-grindstone thing) now had real careers making real money, and I was still stuck at the McJob level.

Jha: My Invisible Disability

My depression is a setback. It means I cannot be continuously gung-ho about things like I would like to be. It means that sometimes I have to withdraw from the world or be overcome with exhaustion. I am easily fatigued. Some days, I want to sleep in the entire day and not have to face the world. Other times, I imagine being in a situation where I wouldn’t have a tomorrow to deal with. This doesn’t make me a failure, and it doesn’t make me, or anybody else like me, any less of a person deserving basic respect and consideration.

Latoya: Open Thread: Science, Conclusions, and Assumptions

[O]ne of the most common requests for content on Racialicious tends to come from people who work in public health. One issue in particular they have asked me to spotlight is the issue of clinical trials. For many years, the assumption was that the effects of medical conditions and medicine side effects would be similar on everyone, even though the only people involved in clinical trials were white males.

Valerie Ulene (Los Angeles Times): When prescribing a drug, doctors have many choices — too many, in some cases

Nobody wants to be told that he or she has a medical problem that can’t be treated, that there’s no medication that will help. For most common ailments, that’s rarely a problem; the trouble comes instead when it’s time to choose a drug. Sometimes there are just too many choices.

And, of course, there are numerous posts from BADD 2010, organized and collected by Goldfish at Diary of a Goldfish!

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 1: Invisible to Whom?

Before I begin, I’d like to make a note on policing and culture. I’m going to go ahead and assume many of you are American. Please keep in mind that American experiences of race don’t apply everywhere. (What I’m particularly concerned with for the purposes of this post is that I’ve encountered a lot of sentiment to the effect that it’s more okay to question and deny the identities of lighter coloured non-white people. This is inappropriate in the Australian context, not least because of Indigenous notions of race. (Well, it would be if there was more respect paid to Indigenous notions of race.)) I can’t get more specific than that, simply because I am unaware of all the differences and issues. What I am trying to say is that sometimes I bump up against American notions of race and find myself confused, and doubtless we all feel the same encountering different cultures. So please keep the following in mind when processing this post or commenting on it: Experiences differ. Questioning an individual’s racial identity is not okay, nor their ways of negotiating it. And, you know, the same regarding one’s gender identity, or disability status, or whatever. The comments on posts in this series will be moderated accordingly.

I am a non-white person with light colouring, and I am physically disabled, but people generally can’t tell either by looking at me. My race and my disability status therefore come under the umbrella of what are known as invisible identities. These are not the only parts of me that fit into the category, but they are the ones I’ll be using to explore some of the problems with the idea of the invisible identity.

So, first up, we’ve got to ask what the phrase means. Invisible to whom? Whether an identity is invisible or not depends on who is looking.

My identities are not invisible to me. So who is doing the perceiving here? Not me, clearly. It’s not my ideas about myself that matter here. And it’s far less likely to be members of my communities observing and not realising I am one of them. So to whom are these identities invisible? The people who don’t share them. The privileged people are the ones who don’t notice my identities, who assume I am one of them, who deny me who I am. They are the ones who are noticing, the only ones with agency here. It is their perspective that gives us the term “invisible identity” and is allowed to define my experience and being.

And, of course, the person who “sees” is inevitably sighted. The whole concept of whether identities are visible or not relies on visual cues (not that those are themselves reliable). Once again, disabled people are left out of the equation; once again, privileged people are in charge of identity. As such, with regards to disability in particular, the notion of invisibility to describe the dynamic here is a fair bit problematic.

As such, the issue we’re left with is that a) other people are allowed to police and define someone’s identity and b) those people are the most privileged ones. White people have enforced a racial hierarchy, and abled people have said that these sorts of people are normal and these ones are not. And whiteness and abledness still seek to control who fits and who does not. But not everyone fits into boxes quite so neatly, and not everyone is the figure these oppressive systems imagine. But those parts of us outside the boxes are still parts of us. I think the existence of people like me acts to destabilise these rigid binaries of the okay people and the not okay people, because, between perception and actual self-definition, we are everything at once.

If you’re assuming you’re going to find white, abled people as you go about your day, you’re going to think you’ve found one in me. Being able to assume you can be in company with people like yourself is a function of privilege. I don’t get to assume that, but I do get to deal with privileged people’s ideas of what a non-white, abled person should be like. I may appear white and abled to someone, but that’s not who I am and not how I experience the world. These parts of myself are routinely rendered invisible, and I’m left to either out myself and gain a whole new set of difficulties in interacting with that particular person or group, or to be awkward and pained by being read as something I am not. And the tension between those two possibilities leads to more issues. I so often feel alone or threatened when in entirely white company and I feel embarrassed to look after my needs around abled people in a way I don’t feel around disabled people.

Because I often attempt to avoid outing myself. Being able to often pass gives me a level of privilege, and also some problems. I hope to devote a future post to that very topic; for now I want to talk about what happens when the invisibility lifts (whether because I’ve made my identity explicit, or someone else has). Once people find out about my being disabled, they often do their best to enforce that. (You poor thing! When are you going to get better! My cousin had that and got better with exercise and determination!) But possibly worse is when they don’t believe my identity, because then I get ridicule and shame and more questioning and you don’t need accommodations, darling. I don’t fit someone’s idea about what disabled people should be like, so I’m a faker and deserve suffering and scorn, lazy hopeless whiner. (Not that more obviously disabled people don’t receive similar treatment!) But whether I’m invisible or not, or whichever of these ways my identity is treated, I don’t get to control it for myself.

It is not a reflection on my identity that other people read me in particular ways; that’s their problem. I have been used to saying that I look like a white person, but the truth is that I look like me, and I am not white. So this is what a non-white person looks like, regardless of other people’s perceptions. I don’t know why someone else’s perception should be allowed to erase how other people react to my identity and – far, far more to the point – how I go through the world and what has shaped me. I don’t understand why it’s so important to have control over someone else’s identity. You cannot tell someone’s background merely by looking, and that is where racism falls apart. You cannot tell someone’s disability status merely by looking, because we have our own ideas about what constitutes disability.

Negotiating invisible identities is a strange place to be in. You’re both limited and given choices that other people are not. And, of course, the extent of the invisibility shifts depending on context (not so invisible when I’m performing cultural activities or limping) and the observer. It’s a complex game of passing, being passed, cues, policing and a struggle to be perceived as one is. It has made me less likely to assume identities of other people, and has made me more careful while going about my life. I can’t know whether being visible would be harder or easier, but I wouldn’t change who I am. I live in liminal spaces, and I have my identities, visible or otherwise.

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

Umbrella Terms

My pet peeve: Labeling “othered” groups as though everyone who falls under that umbrella term has the same needs to achieve full inclusion in society.

For obvious reasons, I’m going to focus on the umbrella of people with disabilities/disabled people right now, but these thoughts have been heavily influenced by reading posts from GLTB activists about trans* inclusion (or lack thereof) and blog carnivals like the Asian Women’s Carnival and International Blog Against Racism Week.

Over the summer, while I was in the process of ranting to Don about my disappointment with our current government’s inclusion of people with disabilities, I was stopped on the street and invited to a talk. “Is it fully accessible?”, I asked.

“Oh yes,” responded the person inviting us. “We have a wheelchair ramp.”

“Do you have material available in braille? Do you have a Sign interpreter?”

“No.”

“Well then,” I snapped. “I guess you aren’t fully accessible, are you?”

(As I said, I was just ranting about this when we were interrupted with this invitation, so it was already on my mind. People need to pick better times to interrupt me. I’d like to think that normally I’d be more polite.)

There’s a certain hierarchy of accessibility that “everyone” knows about. If you have a ramp, you’re good! That this doesn’t address the needs of any number of disabled people is irrelevant – the main image of people with disabilities is that person (usually white and male) in a wheelchair.

So, in the effort to be inclusive without thinking thoroughly about what disability means, and who is included when making accommodations, we end up with situations like this one, from the comments on a post on disability at Feministe:

Willow:

Fire alarms. So it’s great and all when fire alarms have bright flashing lights in addition to the blaring sound, so people with hearing loss (like my dad) will know if the alarm goes off and be able to evacuate, right? Yeah, well, it so happens that I have photosensitive epilepsy, and the light on pretty much every alarm cycles on a frequency that triggers my seizures. So if the alarm goes off, not only do I have a seizure, which sucks in the first place, but I also cannot evacuate the building because I am either (a) unconscious and convulsing or (b) in “zombie mode” and unable to navigate the world safely.

I always feel so, so guilty about advocating for accommodations for people with epilepsy that will make the place unsafe for people with other disabilities…but at the same time, I have EXACTLY THE SAME RIGHT to be able to be there and/or be safe there. It seems as though some types of disabled people–deaf, blind, and/or in a wheelchair, in particular–are privileged over others. I lived on campus as an undergraduate, and when the school installed a new fire alarm system that included flashing lights, I was told that they would have someone “come check on me” whenever the alarm went off. Excuse me? You can’t have someone come check on the zero deaf students in the building but the three of us with photosensitive epilepsy have to wait until the fire department shows up? Not to mention the risks that come with having a seizure in the first place (such as, for example, death)?

Thoughtless accommodations, but gosh darn it, we’re “accessible”.

I know next to nothing about epilepsy, and my knowledge of deafness is limited, so I have no idea what sorts of accommodations would balance both the need for a flashing alarm and the need not to cause seizures in people. But that’s not my point. The point is that full inclusiveness, rather than going for the “easy” solution, would actually consider those needs and work them both in. It would be working with people with disabilities to design safety systems that would accommodate everyone. (Deaf people can also have epilepsy, after all.)

Grouping “othered” populations under this umbrella term allows the “general” population to decide “Oh, I’ve included a ramp, I’ve got a flashing light, and there’s braille on my elevator buttons, I’m set.” But we don’t all have those needs.

We’ve been grouped together as having the same needs both because it’s easier for the “general” population to decide they’ve “done enough”, and because we have greater strength in both self- and group-advocating when we band together. But, just like when other “othered” groups band together, things get left out, put aside, maybe next yeared.

I’m still mulling all of this over. My main activism-related issues are The Big Ones – my city is full of “just one steps” and has a serious lack of Sign Language interpreters. But right now, I’m sitting in a room with fluorescent lighting (severe migraine trigger). It looks like the fire alarm is of the flashing-light type. The door is pretty darn heavy. I haven’t seen a single TTY- pay phone on campus. And probably several other things that I’ve missed.

It’s almost like the easiest, umbrella-term solution isn’t the best one.

I’m still thinking about a lot of this stuff – I certainly don’t have all the answers. Feel free to get into it in the comments. (My schedule is such that I won’t be able to respond to anything until evening my time at the earliest, although other moderators will be approving comments for me.)