Category Archives: social attitudes
I am on the 38 Geary, coming back from an appointment with the cardiologist.
There is a large box on my lap.
I am sitting in the disabled seating, because it was the only seating available when I got on the bus. Normally I try to sit further back, to make room for those who are more disabled than I am. I have no choice but to be here, in the front.
The bus is getting crowded. Teenagers horse around in the back. An older Chinese lady with bags of vegetables is sitting next to me. Across from me, a veteran, returning from an appointment at the VA. We talk. About the VA, about caring for veterans. I do not offer up who I am, where I am coming from, what I am doing here in the disabled seating with this box on my lap.
More and more people get onto the bus.
I wonder why the driver doesn’t skip stops and let a bus behind us pick some of these people up. People are crowded into the aisles, hanging on to the straps and the bars.
The bus sighs to a stop, load of humanity seething inside.
A person with a cane walks on.
I want to get up. I want to get up. I want to get up.
I want to stand so that this person can sit.
I am dizzy. I tripped coming up the stairs to the bus, almost dropped my box, in fact. I know that if I get up, I will fall down. My hands are too weak to grab one of the poles, I am too short to reach the straps that hang from the ceiling, what will I do with my box?
I cannot get up.
I cannot get up and I am consumed with guilt. It is filling my box, it is overflowing, I feel like everyone is staring at me and I am flushing and my heart is fluttering.
And the moment, it happens.
“Why don’t you get up, little lady,” someone says.
I stare at the floor. I stare at the box.
“I…can’t,” I say. “I’m sorry.”
I look like the picture of entitlement, here in the disabled seating. I am pale and sweating and trembling and my lips and fingers are bluish but that could be drugs, after all. Here I am, with my box, preventing this person with a cane from sitting. This person who is standing right in front of me, holding the bar by my seat, because it is the only place left on the bus.
I hate myself.
I am convinced that everyone on the bus hates me.
I look around, hating myself for policing other people but wondering if one of the other young people who appears to be able will do the right thing and get up so that the person with a cane can sit down.
I hate myself.
I try to convince myself that I should not have to explain myself, that the disabled seating is there for people with disabilities to use, that I have a right to sit here. But so does the person with a cane. Neither of us is more deserving than the other, I just happened to get here first.
I hate myself.
One of the older women in the seats across from me gets up and says “here, take my seat” to the person with the cane, and she shoots me a dirty look. I still feel like everyone on the bus is staring at me. Hating me.
And then one of the things in my box falls out. It is the bill from my appointment. It is the thing which details what has just been done to me, and exactly how much I just paid for it. The bill which specifically says that I am supposed to have someone come to pick me up afterwards, which is something I lied about, leaving the office, “oh yes, of course I have a friend to pick me up.” Because there is no one.
The person with a cane leans over to pick it up, to pass it to me, eyes widen.
“Here, I think you dropped this.”
“Oh, thank you,” I say, trying to reach around the box to reach the outstretched piece of paper which now other people are staring at too, including the woman who stood up, who is standing right next to my seat.
Because it’s the only place left on the bus.
She sees it and her hand reaches out automatically and she leans to pass it to me and then “oh,” she says.
As I’m typing this, it’s the wee hours of the morning of December 6th. Today marks the 20th year since the Montreal Massacre, when Marc Lepin walked into the Ecole Polytechnique and murdered 14 women, blaming feminism for ruining his life. (He also injured 10 other women, and 4 men, before turning the gun on himself.)
Over the past 20 years, I’ve probably attended 14 memorials for the Massacre. The ones I’m most familiar with were the ones held at the first university I attended. There, we would gather in a solemn circle lit only by candles. 14 young women would each read the name of one of the dead, and blow out their candle, and we would mourn.
Last year I attended Halifax’s first “Not So Silent Vigil”. Instead of focusing on the murders in Montreal, this vigil was for all the women in Canada who have been victims of domestic violence. Speakers, singers, dancers, and even a hilarious feminist comedienne took on the subject of violence and sexism. There was a moment of silence, in memory of our dead. There was a moment of screaming, for the women who cannot or will not scream.
We have this memorial for gender-based violence every year. In recent years, national vigils have begun to remind us of dead and missing First Nations women (Sisters in Spirit Vigil [PDF]) There are vigils around the world for trans* men and women. We are beginning, slowly, to talk about how these different identities mean that some women’s deaths count, while others don’t merit more than page B3 in the local news.
The Not-So-Silent Vigil (last year) was a group project where many women representing many groups in Halifax came together and created a dramatic and moving experience. I found it to be inclusive of First Nations women and Africa-Nova Scotian women, although others may have different opinions.
It was until I was walking home with Don that I realised that there had been no mention of women with disabilities.
I don’t fault the people behind the Vigil for this. They did a lot of hard work to bring together the groups that they did, and I have no idea if more people will be involved this year, if women with disabilities will be included. (If not this year, then I should get myself involved for next year – I think the women who do this work every year take on a great deal, and I wouldn’t want to ask them to do more than they already are.)
But I also wonder – would it be controversial for me to ask for a moment of silence and screaming for Tracy Latimer? Every time her murderer, her father, comes up for parole, the newspapers take the opportunity to argue whether or not it was morally wrong for him to murder Tracy. People argue that he should be released, because it’s not like he’ll kill again. Disabled children don’t come along every day, after all.
I don’t know, I don’t know. It’s really hard for me to write about this. I don’t want to risk being told that the murder of women with disabilities is a special interest that shouldn’t be brought up at this memorial. But at the same time, I have no reason to believe that I would be told that (except that I’ve been told that in the past, about other memorials to violence against women, but not by this group). Is it appropriative to want to name our names, to remind everyone that violence against us is sometimes considered okay, because our lives are considered less worthy?
Katie-Lynn Baker was starved to death by her mother. Her murderer argued that she could tell Katie-Lynn, who had Rett Syndrome (a form of autism) and couldn’t speak, wanted to die, so she just stopped feeding the 10 year old girl. Her murderer was never even charged with a crime.
Chelsea Craig was fed a lethal dose of medication by her mother, who was found not criminally responsible due to mental illness. The accused claimed she murdered Chelsea because she didn’t want to leave Chelsea alone with her father.
The murderer of Charles-Antoine Blais drowned him in the tub because his autism was too much for her. After her year of community service, she became a spokesperson for an Autism foundation in Montreal. He was 6 years old.
We don’t talk about these names, these deaths, very often. Tracy’s comes up whenever her murderer is up for parole, but I had a hard time finding information about the other names, about Chelsea and Katie-Lynn and Charles-Antoine. We don’t seem to have a national memorial, a day to honour the children who are murdered for being disabled, the women who are raped for being institutionalized, the beating and torture of cripples done out of boredom. We don’t recite the names of our dead.
Should we? Should I incite controversy and recite the names today? Should I shout them during our moment of screaming, for myself if no one else? Should I approach the women who have worked so hard on this vigil and ask to be a part of it, so next year I can recite the names of every woman with disabilities murdered in Canada in the next 12 months?
Is silence ever the right answer?
Today we remember our dead, killed for being women and daring to attend Engineering School, and I recite these names, like a rosary, every year.
I hope you will all forgive me, but this has taken 2 1/2 hours to write, and I have no idea if I’ll be able to discuss it.
I’d heard mentions recently of the show Hoarders, on A&E. (I’m not going to link to their site.) The show, from what I gather, is a series with episodes focusing on individuals who compulsively hoard possessions. I’ve never watched it and do not plan to, as I’m extremely uneasy about television shows that focus on people in crisis to, well, entertain other people. I have the same issues with Intervention (also an A&E show) and the Celebrity Rehab/Sober House/Sex Addicts shows with Dr. Drew. I understand that on some level, they could be useful or educational or contribute to diminishing stigma and demystifying therapy and counseling, but mostly it just feels like taking advantage of people who are dealing with addiction or disability.
This is especially true as the core of all reality tv is, of course, drama – so the shows focus on people in absolute crisis, at proverbial rock bottom, relapses and failures. And the drama is heightened when the person’s disability or addiction is as extreme as possible. So the Hoarders show focuses on people who are extreme hoarders, having lost friends and family because of their compulsions, not someone who has a drawer in the kitchen filled with old takeout menus. This extremely heightens the message that the person in the show is an “other,” a “freak,” to be gawked at.
And that’s the problem – even if I never watch these shows, there are still people who watch them and then talk or write about them. I’ve managed to avoid the worst of it, but commenter Penny, catastrophe discovered this “gem” at Jezebel and sent it my way as an example of the ableism at its extreme. It’s bad enough that before I go any further, I should warn you that some of the quotes are truly horrifying and you may not want to read them. We start off on a great foot with the title: “Sometimes, A Hoarder Just Can’t Be Helped.”
The very first sentence of the post informs us that the author found Augustine, the woman who is the focus of this episode of Hoarders, “frankly, very hard to empathize with.” Red flag! You are not watching this television show to determine whether the person with a disability is worthy of your empathy! Or rather, if you are, you should turn the tv off immediately. This is a real woman, a person, a human. The premise of the show, indeed the title of the show, indicates that she has a disability that has had a monumental effect on her life and functioning. If you are watching a show about her without empathy, then you’re just pointing at a sideshow freak.
The post then goes on to applaud the professional counselors who come to help Augustine, “who miraculously remain positive and chipper throughout the entire ordeal” even though there is stuff in the hoarded material that the author clearly considers to be super duper gross. But in the author’s eyes, Augustine’s biggest sin is not hoarding icky things, it is that she “has no remorse for what her actions have done to her family and her community … and absolutely no gratitude toward the people who are trying to help her stay in her home. She only blames other people for her situation.” This is the point in the post where my jaw actually dropped open. Yes, the woman who the show profiles specifically and explicitly because she has extreme compulsions to hoard … has strong compulsions to hoard! The author seems to think that Augustine has been hoarding out of spite or stubbornness and now that these people are helping her, she will just “snap out of it” and repent. But that’s not how a disability works. And blaming Augustine for not being magically cured of her disability during the course of taping is cruel and ableist.
But wait – it gets even worse. We are not done applauding these saintly folk who have taken time out of their days to help this woman with a disability who does not even appreciate all that they are doing for her. “Watching this episode, it’s impossible not to be struck by the generosity and caring of the people who are helping Augustine, and to wonder if their resources couldn’t be used helping other people who actually want to change.” Yup. That’s a direct quote, really. Or, in other words, Hey, we sent a counselor down there, and she didn’t immediately change her entire life and patterns of thinking. So fuck her. We’re done with her. Because this woman with a disability didn’t act the way we wanted her to. “Augustine seems less like a person with a compulsion caused by feelings of loss who desperately wants to get her life in control, and more like the clinical definition of a sociopath.” Or, because she wasn’t disabled in the way the author expected her to be disabled, we should give up on her.
So for me, the commentary is worse than the show itself. The show just places the person with a disability in the public eye – it takes a member of the public to do the pointing and laughing.
I suggested a treatment/”cure” to a PWD for her/his/zie’s condition, and they ignored my suggestion/did not throw themselves at my feet with gratitude/got upset. Why? I was only trying to help!
Many people who do not live with chronic health issues, perhaps in a spirit of wanting to help those they know who are in pain, disabled, chronically ill, or affected by a neurological or mental health condition, may suggest different treatments or ways that they believe the person with the condition, illness or disability should use to “get better.” Many PWDs and chronically ill people, however, have experienced this exact process before, and often to the point where such “well-meaning” pieces of advice get…well, annoying; a stranger, acquaintance, co-worker or relative might suggest something that has been suggested many times before. Such “well-meaning” suggestions may imply some very different things to the PWD, chronically ill person, person with a mental health condition, or non-neurotypical person, namely:
…that they cannot be trusted to manage their own health, disability/disabilities, or course of treatment. Many people with disabilities and chronic illnesses have found treatments that improve their quality of life. Even with these treatments, they will probably still remain disabled/ill or still have their condition; the treatments that they have worked so hard to find, additionally, most likely work for them. It is not your job, whether you are a friend, relative or other person concerned for the PWD’s “well being,” to bombard them with suggestions for different treatments, or push them to “just try” treatments (some of which may even be questionable in their effectiveness). There is a long history of people with mental health conditions, the non-neurotypical, persons with disabilities and chronically ill people being forced into undergoing treatments, into hospitals, and even into institutions by able-bodied people who presume that those with the health problems are not pursuing the “right” kind of treatment, and that this must be corrected—even at the expense of the individual’s humanity. Unless you are a professional, doctor or other specialist working with the person who has one of these conditions, and/or unless the treatment that they are undergoing is actively damaging their health, it is probably best to keep your recommendations about what course of treatment that you think the individual should be undergoing to yourself.
…that you are frustrated by the individual’s inability to “get better.” You may not say or even think this outright, but in some cases, actions speak louder than words.
…that you want to be given cookies/be thrown a parade/told you are fantastic for suggesting something that, in actuality, has probably been suggested to the individual many times before. In its more severe forms, this tendency is known as the “savior” or White Knight complex. Here’s the problem: Disability, chronic illness, mental health conditions, non-neurotypicality and pain, for the most part, are not things that can be cured. They can be dealt with, but it is oftentimes up to the person with the condition—-with appropriate support from family and friends-—to decide which treatments he/she/zie would like to pursue. Though you might like to, you cannot be the affected person’s able-bodied savoir. It is not the job of PWDs/chronically ill people to make you–an able-bodied person–feel better about yourself, whether by following your every treatment-related suggestion, or being uber-thankful whenever you deign to offer well-meaning advice that is related to their condition(s).
In addition, finding the right treatment(s) to improve quality-of-life can be a long, tiring, and agonizing process for many persons with disabilities, chronic illnesses, health conditions, mental health conditions, and neurological conditions. For many, starting an entirely new treatment for their condition(s) would, on some level, entail starting all over again; since getting to the point to where they are able to function and where their quality of life has been improved takes a long time, do you think that many non-able people would want to start from square one again to “just try” a treatment that’s been suggested, offhand, by a “concerned” person in their lives, that might not even work for them—-or that, in some cases, may make them worse? Because of each individual’s limitations when it comes to things such as time, finances, energy, tolerance/intolerance of additional discomfort or pain, or medication/treatment side effects, starting over with a “new” treatment might actually be a huge inconvenience for some people with disabilities, chronic health conditions, non-neurotypicality, or mental health conditions.
An earlier version of this piece was posted at Faces of Fibro on July 6, 2009.
“Treat us like you would anyone else.”
It’s a common catchphrase you hear in some spheres of disability rights activism when an able bodied person asks about how to behave around people with disabilities. Pretty simple, right? Treat us like you would anyone else. Acknowledge that we are human beings. That we have a right to exist. That we should be treated with respect. That we deserve space on this Earth, just like everyone else. Greet us when we enter a room. Talk to us, not our interpreters/communicative devices. Don’t touch our assistive devices without permission.
You get the drift.
Be good. Be kind. Be human.
Now, try requesting accommodation.
“I thought you said you didn’t want any special treatment,” they say.
Folks, accommodation is not “special treatment.”
I know that a lot of us have been told our whole lives that requesting accommodations is being unreasonable and demanding special treatment. It’s not. We shouldn’t have to request accommodations in the first place, because if people treated us like everyone else, they would respect us as human beings and recognize and try to anticipate needs. Kind of how like a group of people walking arm in arm will break up and go single file to let someone else pass them on the sidewalk.
That’s not special treatment. That’s recognizing that another human being has a need which should be accommodated so that this human being can go about daily activities.
Talking about this with Anna recently, she pointed out just one source of frustration; the need for wheelchair-accessible transport to the airport. “Don needs to get to the airport,” she said. “That’s all. Just like everyone else who needs to get to the airport from their house.” Getting to the airport is not a “special need.” Needing a form of transit which you can actually travel on is also not a “special need.” These are needs which people at all ability levels actually encounter pretty regularly.
Likewise, everyone needs to eat. Everyone needs to breathe. These are not, in any way shape or form, unusual needs. And there are lots of different ways to fulfill them. One way is not better than another. And we have a duty, collectively, to make sure that all ways are equally accessible. There it is, the A word.
Accessibility is not about special treatment. It’s about ensuring that people are able to do things they need/want to do. Just like everyone else. We are not asking for special treatment when we request accommodations, we are just asking to have our right to access recognized.
Talking with my father about this recently, I was trying to frame accessibility in a sense that he would understand. I said “imagine that I was a full time wheelchair user, looking for a place to live. When I arrived at my house [referring to the house I live in now] to look at it, I would have turned away immediately. Because my house is not accessible. Every time you deny accommodations, it’s slamming a door in someone’s face.” My father said, in a bit of a lightbulb moment, “so, what you’re saying is that for people who need accommodation, the world can be like going to look at houses for rent and being told that you can’t have the key to the front door?” And I said “yeah, pretty much.”
Accommodation is the key to the front door. And everyone’s entitled to have a key to the front door, people.
One of the hardest things for me in dealing with my mental health condition is my very strong theory that everyone else is having exactly the same problems that I am, but they’re just 8 million times better at dealing with them, and hiding them from everyone else. And thus, I don’t talk about my mental health, much, because everyone else is obviously coping with the same thing, and I’m just a big whiner who can’t cope and fails at everything and is useless and should just run away and everyone will be better and– stop.
For extra special bonus points, my mental health condition will also remind me that if I just try hard enough, if I just do more things, I will prove that I’m coping Just Fine and everyone will love me and why would anyone want to talk to someone who isn’t doing all this extra stuff and if I just could cope the way everyone else did I wouldn’t have these problems and I would just be good enough and not have to do all these things and– stop.
It’s a fun game my brain chemistry plays with me and part of the reason it’s so successful is because of how mental health conditions are portrayed in popular culture.
I don’t talk about how my brain is working this week (this month, this semester) because I’m afraid. I’ve already experienced backlash related to my mental health condition online, and I fear “coming out” to my professors, my classmates, or the people on any of the six committees I’m on this semester because suddenly I’ll be weak. I’ll be the scary girl who might snap. Maybe they’ll ask about my experiences being detained by hospital authorities for “my own good”. Maybe they’ll start to doubt the validity of my research, or dismiss my opinions, or stop telling me about meetings, or start talking about me behind my back, whispering and then they’ll be making fun of me all the time and it will be just like high school and I am not sure I can cope with that again and I don’t want to go to the hospital and I don’t want to go to the doctor and tell them I’m not coping because they’ll lock me away and– stop.
It took me a decade of this constant self-talk before someone told me it wasn’t “normal”, and that I could get help to deal with it. And despite having gotten effective help in the past, despite increasingly being able to keep myself focused and on task and not falling apart all over the place, I’m still deathly afraid of talking to people about mental health concerns. I’m still afraid, today, right now, to go to my doctor’s appointment because doesn’t everyone have their heart pounding in their ears during class? Isn’t everyone convinced their profs all hate them? Doesn’t everyone think that if they just stretch themselves a little thinner, they’ll be good enough?
The only reason I resisted getting help for so long, when I could have been getting help as soon as I started having these symptoms, was because Mental Illness has a huge social stigma attached to it. People like me, who “just” have such bad self-talk that they harm themselves in ways that aren’t easily noticed (six committees? plus the writing for the paper? Plus the FWD/Forward blog duties? Not to mention trying to finish the MA in a year? With a husband who’s recovering from cancer surgery and has a disability? And trying to make sure everyone eats healthy, and trying to keep the housework up? Self, what are you doing? Besides doing it all wrong, of course.) can end up not seeking help because I’m not crazy, I’m just stupid and lazy. We’re lead to believe “real” mental health conditions are like t.v. version of schizophrenia and movie versions of OCD.
I had a great ending planned to this, that would invite people to talk about how pop cultural portrayals of mental health concerns affected them. I also wanted to write about how I don’t want to put a stigma on schizophrenia and OCD, but on the way these conditions are portrayed in the media, but if I keep writing, it’s going to be another way to not go to the doctor and get a needed prescription for anti-anxiety medication. Last year I didn’t go to the doctor until I thought I was having a heart attack and could barely breath.
But it’s all in my head, right? People like me, we’re just weak.
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.
I’m starting this post off with an anecdote (I do that a lot, don’t I). But it’s such a perfect anecdote that it really does belong here.
I recently attended an event in a historic building which lacked wheelchair access from the front, although it was accessible (kinda, you had to go down a sort of sketchy path to get there) from the back. As I was climbing the steps to the front door, a Black woman in a wheelchair rolled up. Without even really looking at her, the representative at the door said “oh, you can enter through the back.”
There are a lot of problems with what happened in this anecdote. Like the fact that the representative didn’t even acknowledge the woman, didn’t even say “hello, thank you for coming,” did not apologize for the fact that the front of the building was not accessible (and didn’t mention that the interior was largely inaccessible anyway), and apparently didn’t see anything even vaguely disconcerting in telling a Black woman to enter a building “through the back.” There was a time in this country, and it was not very long ago, when Black folks were expected to enter any building through the back. If at all.
Proceed to the back of the bus. Enter through the back. What do these things have in common? They are denials of personhood. They are denials of the equal right to access space. They both imply “we don’t really want you here, but we must allow you in, so we are going to begrudgingly allow you a form of ‘access’ to our space.” And they are extremely problematic.
“Historic preservation” is an excuse I see used to deny accessibility a lot. In part, it’s because I live 10 miles from the village of Mendocino, which is, quite literally, one big registered historic landmark. In 1971, huge chunks of the town applied for and were granted admission to the National Register of Historic Places. Mendocino takes historic preservation so seriously that they have a Historical Review Board to review any proposed activity, and I mean any proposed activity, which might impact the appearance of the town. Recent selections from their agendas include topics like whether or not signs can be moved two feet to the left, if someone can paint a shed, and if someone may erect a tent in a backyard for two days for an event.
The Historical Review Board is infamous for its draconian attitudes, and a lot of what goes on there is about power plays, unsurprisingly, for a small town.
What, exactly, does this have to do with accessibility? Well, I don’t think it’s a coincidence that Mendocino is highly committed to historic preservation and extremely inaccessible. Most of the businesses there are only accessible to people who can walk unassisted. Wheelchairs, walkers, and even canes are very difficult to use in Mendocino. The town has narrow, coarse, steeply sloped sidewalks (including original wooden sidewalks) which are extremely difficult to navigate (not least because they are often rendered innavigable with random objects like tables, chairs, discreetly positioned trash cans, and so forth). There are few curb cuts. I can walk unassisted and I have stacked (“fallen spectacularly and painfully,” in California argot) more times than I can count on the sidewalks of Mendocino. The doorways of businesses which one might theoretically reach in a wheelchair are often too narrow for a chair to get through, and almost all are “just one step” doorways. If you’re in a power chair, forget it.
What’s wrong with this picture?
If you can actually get inside a business, good luck getting around. Few businesses have chairs which people who need to rest can use. Most of the counters are so high that only adults of average height can see over them to do business with the clerks (I’m short enough that clerks often don’t see me or can’t assist me without coming out from behind the counter). Aisles are narrow and extremely cluttered. As for navigational aids to assist the visually impaired, forget it. And if you’re Deaf or hard of hearing? Again, good luck.
Mendocino has steadfastly refused to provide accommodations of any kind, under the guise of “historic preservation.” They didn’t have things like audible warnings at intersections, curb cuts, ramps, and other accessibility aids in the time period which Mendocino is attempting to crystallize itself in, therefore, they can’t be implemented in Mendocino. Even if this means deliberately excluding people, literally telling them that they (and their money) are not wanted in Mendocino. The argument is that accessibility would “ruin the experience” and “break the spell” for visitors to Mendocino.
Here’s one of the wooden sidewalks I mentioned. I am standing on the step one has to mount to get onto it from the North side…
And here’s the flight of stairs you have to mount if you want to access it from the South side. If you can’t navigate stairs, you’re forced into the street, which is to the immediate right of this image.
Yet, Mendocino allows cars, which is not historically accurate (the town is aiming for late 1800s). Mendocino also allows people of colour to enter its businesses, through the front door, even, which is also not historically accurate. Interracial marriages and same sex commitment ceremonies can be performed in Mendocino’s churches: Not historically accurate. The female residents are allowed to go to the polls on election day, even!
In fact, Mendocino is doing what any organization/group/etc committed to historic preservation does in the modern era: They are trying to retain the flavour and sense of history, without overriding social progress. The residents of Mendocino would be infuriated if someone suggested that interracial marriages in the town should be banned because they aren’t historically accurate. As well they should be. Because they recognize that history is problematic. It’s not all good. There are some things which are best left in the past.
This does not, apparently, apply to ableism. Because No Historic Building Ever Ever had any sort of accessibility accommodations, this means that no building in Mendocino can be accessible. Besides, accessibility accommodations are ugly and annoying and how many people with disabilities are there, anyway? Why do these people want special treatment? That’s the kind of attitude that prevails in Mendocino, and among many historic preservationists and laypeople scrambling to come up with an excuse for evading accessibility requests (let alone requirements) and it is extremely frustrating.
Here’s the front entrance to the Mendocino Hotel, right on Main Street. It’s a little hard to see in this picture but there’s a sign which indicates that access for wheelchair users can be found around the side. Evidently the “separate but equal” doctrine is still alive and well at the Mendocino Hotel. Let’s go check that out, shall we?
Enter through the rear, please!
Because there’s no reason it needs to be like that. Accessibility accommodations can be (and are) tastefully implemented. There are ways to make buildings accessible without compromising their historic integrity. These methods would involve the use of technology which was not present in the past, but electricity is a relatively recent invention and no one no seems to have a problem with the fact that most buildings are electrified these days. So, clearly, people are willing to use modern technology when its convenient or when they are required to do so for safety reasons (I don’t see people complaining about smoke detectors in historic buildings, for example). Indeed, designing accessibility accommodations which fit seamlessly with an area of historic preservation would be a really interesting design challenge, and one which I think could be met in some very creative ways.
Here’s one of Mendocino’s most famous historic sights, which apparently sighted people with disabilities don’t need to see. This building, incidentally, is the bank; check out their inaccessible ATM:
No talking ATM option, and while it’s not clear here, parts of the Braille are worn away. There are also a number of signs (not pictured) spelling out various quirks of the ATM which people would actually need to know about to use it successfully.
So, why won’t Mendocino and the numerous places like it across the United States meet the needs of the roughly 20% of the American population which is classified as disabled? Why do so many people cry “historic preservation” when they are approached about the possibility of implementing accommodations anywhere, not just in Mendocino? Why is “historic preservation” so selective? Surely it has nothing to do with internalized ableism!
I didn’t stage this. I swear. I just happened to notice, while I was wandering around town documenting accessibility fail, that this mobility scooter was left outside an inaccessible business.
Lis is a 22-year-old university student from Western Canada. She studies psychology, and is currently working at a school for at-risk inner-city youth. In her free time, she writes fanfiction and participates in the Society for Creative Anachronism.
The first time I held my cane, I cried.
It wasn’t a feeling I expected, to be honest. I’d been fired the week before from a job I enjoyed, for telling my employer I was in too much pain to stand for the entire shift, but things were coming out on my side. I had all my friends and family supporting me, and I’d found enough self-esteem to file a complaint with the provincial Human Rights Commission, alleging discrimination on the basis of disability. It was time, in my mind, to give up beating around the bush.
I’d been raised by parents who lovingly ignored my seemingly minor birth defects, who didn’t want to stigmatize me any further than a Gifted girl in public school could be. They felt that letting me wear normal shoes was the least they could do. When a nagging ache formed in my right knee and hip in my teens, I tried to ignore it and the fact that it wasn’t going away. I was twenty before I went to a podiatrist, who didn’t have to do more than examine my hips and spine when I told him I was in pain before snorting in disbelief and saying, “Yeah, no wonder.”
My right leg is five and a half centimetres shorter than my left, with the discrepancy fairly evenly distributed between my femur and tibia. It’s the kind of thing only the tailors who hem my pants notice, when they call my house anxiously asking me to come in for a second fitting in case they made a mistake.
But I was sick of living in pain, and after I’d been fired for requesting a stool it didn’t feel worth denying my pain anymore to look abled, so I went out to the Mobility Aids aisle of the local London Drugs. A fellow fanfic writer who used a cane had told me what to look for: adjustable, orthopedic, and unrepentant. The one I picked off the rack was a vivid aqua.
Then I cried holding it in my hands, because I couldn’t pretend anymore that I wasn’t disabled.
After that was over, I went down to Stationery for a pack of Sandylion stickers, made my purchase, and sat outside that drugstore wiping the tears from my face and plastering the cane with pink and purple butterflies.
How do I say what that cane meant to me? None of the abled people I’ve met understand it with anything but pity. I’ve always had low self-esteem and what my psychologist later diagnosed as social anxiety, a terror of asking that my needs be met, of attracting unwanted public attention. Now I had a public declaration of my needs, and it was bright blue. The cane did some of my talking for me, so I became able to stutter a request for a seat on the bus, or ask not to walk long distances. I was attracting the sidelong glances and whispers I’d always feared, but all they made me do now was grip my cane a little harder and stare back at them. I knew I was in the right. They knew it, too, because they always glanced away.
How can I explain that after years of living in pain to be what was expected of me, that cane taught me to say I want and I need and I deserve? That it was never something I was bound by; that it gave me the ability to walk further, stand longer, move quicker than I would before? That I missed it when it wasn’t in my hand?
Society marginalizes disabled bodies and takes away their sexual agency, but being visibly disabled helped me find mine. I’d always felt anxious about my body, about being attractive, about being good enough: I always chided myself for not reaching some nebulous ideal. The great lie I had been able to believe when I was abled was that perfection was achievable: that if I only said and did the right things, I’d escape criticism from myself and others. It was in facing criticism and dismissal that I learned I’d been playing a mug’s game. The point wasn’t to make other people happy; my body didn’t and couldn’t exist to meet their standards. The only standard I could meet was mine. I used to be mousy, deliberately homely, as if my unfitted jeans and baggy shirts said, I quit, don’t criticize me for not being sexy. I wasn’t trying anyway. I was able to use the invisbility cloak of disability to begin to experiment with femininity, with ornamentation, without needing to be perfect. I could wear a low-cut shirt, I reasoned, because I’d have my cane. Nobody would look at me anyway.
(Oh, but it surprised me, the first time somebody looked anyway.)
Being disabled meant, for the first time, having the ability to talk about my body and my frustrations with it without judging it as bad. It meant that I, with all my flaws visible and invisible, was still worthy. That I still possessed dignity. That I was still human, no matter whose standards I failed to meet.
I don’t know how to explain any of this. I don’t know how to respond when I walk into work now, freely and unassisted, and have a coworker say, “Hey, you aren’t using your cane! That’s fantastic!”
The orthotic lift I started using a year ago finally stopped hurting, enough that a slight increase in height at the end of September took away the pain in my knee within two weeks, which got rid of my need for the cane. My ambient pain has at least halved. I’m not relying on prescription painkillers to get through my day. I can climb stairs. I’m beginning to hope I can even fence again. After so long living with pain I didn’t think would ever go away, I almost don’t know how I feel. I guess I’m happy. I’m cured, right? I’m enjoying my body again. I definitely don’t miss the pale, persistent ache in the shoulder of my caning arm that no height adjustment could completely banish. I ran to my car last week, just because I can do that now.
My cane still hasn’t moved from its habitual place, on the floor of my car between the seat and the door. I don’t take it out to use it anymore, haven’t touched it for the last two weeks, but I can’t bring myself to hang it up. Sure, part of me’s waiting for the honeymoon to end and the pain to come back at any moment, but that’s not it. That cane has been a friend to me. It’s been part of my voice, my statement about who I am, and a lack of apology about being flawed in public. It’s helped me move, let me go places, allowed me to function. It has been a source of succor to me in my hour of need, and I find it as hard to cast aside now as it was to pick up in the first place.
What I really want to say to the well-meaning people who wish me health and happiness is, it isn’t about the cane. It wasn’t about receiving pity from people in public for being disabled. It wasn’t about the looks or the whispers. I was in pain that disabled me from truly living for years before I picked that thing up. It was never about the cane.
It was about me.
I and others are going to be talking about the medicalization and pathologization of trans* gender identities here at FWD/Forward in the coming weeks and months, so I wanted to put up a definitions post so that we can all get familiar with the kind of language we will be using. I want to note that, uhm, people write entire books about this issue. So, obviously, I can’t cover all the ground in a single post. This is a starter to lay out the basics, not a definitive dictionary.
I also want to note that this terminology differs within the social justice movement, and in various areas of the world. This means that you may disagree with some of my word use/definitions here because they are coming from a specific perspective. Remember: This is a starting point, not an ending point. If I really flub up, please let me know; I’ve tried to be very meticulous about the structure of this post, but I do mess up, and I would like to have my attention drawn to it if I have mischaracterized something (or someone).
The gender binary is a construct of gender which views gender as falling into one of two camps: male or female. Under the gender binary, these are the only options. Gender essentialists believe that assigned sex at birth is also one’s gender for life. Other folks believe that it is possible for one’s binary gender identity to differ from one’s assigned sex; e.g. someone may be assigned male at birth and later realize that she is a woman. Take, for example, a person with a gender identity which differs from assigned sex in the sense that she was assigned male at birth and knows she is female or in the sense that he was assigned female at birth and knows that he is male. This individual may be referred to as a trans person or said to be trans gendered, and as a transsexual person if he or she pursues medical treatment such as hormone therapy, top and bottom surgery, etc. These trans folks still fall within the binary, however: They have a gender identity which is male or female. (Though they may not necessarily subscribe to the idea that gender is a binary, it’s just that their gender identity happens to be on the binary!)
It’s important to note that intersex individuals (more information on intersex folks) are a problem for the gender binary. Under the rules of the binary, they should not exist, which means that being intersex is treated as a pathology which must be corrected. Historically, intersex people have been subjected to invasive surgical procedures at birth in which a gender is medically assigned. In some instances, these individuals later turn out to be trans gendered, as in the case of someone who is assigned male who later turns out to be a woman. These individuals may also later realize that they actually have a nonbinary gender identity.
The nonbinary view of gender recognizes that humans actually express and experience gender along a spectrum. Gender identity, in other words, is not as simple as “male” or “female” although these are points on the spectrum. This view does not pathologize intersex people and makes room for people who do not identify with a male or female gender. The umbrella term trans is sometimes used to refer to these individuals (and sometimes not, depending on where you are), and they may also be referred to as nonbinary. In this case, “trans” refers to someone with a gender identity which differs from assigned sex at birth, as discussed above, but in these instances, that gender identity does not fall along the gender binary. I tend to use “nonbinary” rather than “trans” when talking about people who are not on the gender binary to avoid confusion between binary trans and nonbinary trans people. Nonbinary trans folks people may self identify as genderqueer, androgyne, neuter, third gender, intergender, genderfuck, etc, but none of these terms is an appropriate umbrella term for nonbinary people. Some individuals identify as nongendered or agendered, which is yet another facet of the gender identity spectrum.
The umbrella term trans* is sometimes used to refer to the entire trans spectrum. I may use this term when I want to discuss all people on the trans* spectrum, including binary and nonbinary people. I do want to briefly note that not all intersex individuals identify as trans*; while they are outside the binary, this does not necessarily make them trans*. We need to avoid making the mistake of lumping intersex folks under the “trans*” umbrella.
Above all, self labeling is important. However someone identifies is how that person should be identified by others. On the flip side of this, it’s important to try to avoid automatic gendering; don’t assume someone’s gender identity on the basis of appearance, in other words.
Obviously, as a nonbinary, I subscribe to the nonbinary view of gender. And because we live in a society which is structured around the binary and which tends to center the experiences of cis (more information on the term “cis”) people who have a gender identity which conforms with their assigned sex, living as a trans* person is incredibly difficult. We are assaulted because of our gender identity and expression. We are reduced to our genitals (or lack thereof). We are policed. Seeking medical treatment can be frustrating and dangerous. We may be denied medical services on the basis of our gender identity, as seen, for example, among trans men who are not given screenings for cancers of the breast, cervix, and ovaries.
Part of the way to address this is to start breaking down barriers, to get people thinking about experiences which differ from their own. Deconstructing the binary and decentering cis people doesn’t threaten or hurt anyone’s gender identity, but it would make the world a lot safer for us. And for trans* folks with disabilities, talking about these issues is literally the difference between life and death.
Here are some other terms which may come up: transphobia (discrimination/prejudice against trans* people), transmisogyny (specifically, prejudice and discrimination aimed at trans women), binarism (prejudice rooted in a rejection of the gender spectrum), cissexism (discrimination which stems from gender essentialism), gendering as a verb (referring to describing gender identity, as in “I try to avoid gendering people until I know how they prefer to be gendered.”).
Some examples of terminology that is not acceptable to use and will not be tolerated in comments here: a transgender (“transgender” is not a noun, and it should also be “trans gender”), a trans (“trans” also isn’t a noun), tranny (unless it is being used in a reclamatory sense by a trans person), woman born woman/women born women (cissesexist and often used in a transmisogynistic sense), biowomen/biowoman, biomen/bioman, biological sex (everyone’s biological, folks–if you’re thinking “assigned sex at birth,” then please use “assigned sex”). It’s also not appropriate to say “transwomen” “transmen” etc–please put a space in, as in “trans woman” and “trans man.” We use a space because we want to avoid creating a new gender; we are using “trans” as a modifier. A trans woman is a woman. A transwoman is…something else.
Here are some links on this topic to get you started with some more material: Questioning Transphobia, bird of paradox, Holly at Feministe, TransGriot, and Julia Serano. I encourage you to do some seeking on your own to learn more about gender identification and the complex terminology which surrounds it, because there’s some very diverse thinking on the issue. Please be aware that comments on this post are being carefully moderated.