Category Archives: bodies

Recommended Reading for 24 December, 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?

The Broken of Britain: The GP’s Story by Dr Jest

So there you have it. Neither Pete nor Dud would have chosen to be where they are now, and neither has asked not to work when they were capable. Indeed both have rather struggled on when reason would have suggested they ought not. And I could name you a dozen others in a similar position. All present talk of making it more profitable to work than rely on benefit may sound very noble and high minded in the marbled halls of power, where hard graft means having a lot to read and a few late meetings to go to. It completely misses the enormous efforts made by the likes of Pete and Dud to keep going against the odds, and any move to impoverish them is little short of scandalous and should be relentlessly pointed out for the evil narrow minded bigotry it is.

Sarah at Cat in a Dog’s World: PWD and TSA

From information I’d heard from TSA administrators, I thought that the body scanners would reducethe need for physical pat-downs. Little did I know that TSA would use the new technology as an excuse to conduct more invasive pat-downs! It is obscene, especially when one considers that many people with disabilities don’t have any “choice” at all. If someone is unable to stand independently for ten seconds with their arms up, or if one wears any number of medical devices or prostheses…there is no “choice.” (And no, for many people, “don’t fly” is not a realistic choice.) There is, additionally, reason for concern about the radiation from the body scanners, particularly for cancer survivors and people who have a genetic predisposition to cancer. It is now pretty clear that body scanners, far from being a panacea, are making things worse. And people with disabilities are being affected disproportionately.

At Spilt Milk: Thanks for your help, doctor.

Make no mistake: I know that this only happened to me because I am fat. If I were a thin person and I walked through his door with the symptoms I described, he would have been forced to dig deeper. To ask me more questions, to hopefully come up with a wider range of options. Maybe run more tests.

United States: Megan Cottrell at ChicagoNow: Got a disability? You’ll see the difference in your paycheck

A lot of people might assume that if you have a disability, you might not make as much money as someone without a disability. But how much less? How hard is it for people with disabilities in Illinois to get by compared to their neighbors?

India: An unnamed special correspondent at The Hindu: Social barriers keep the disabled away from workforce:

Persons with disabilities are the last identity group to enter the workforce, not because their disability comes in the way of their functioning, but because of social and practical barriers that prevent them from joining work, a study on the ‘Employment Rights of Disabled Women in India’ carried out by the Society for Disability and Rehabilitation of the National Commission for Women (NCW) has said.

Guillermo Contreras at Chron.com: State sued over care for disabled Texans

The federal lawsuit, filed Monday in San Antonio, alleges the state isn’t providing some mentally and physically disabled Texans the opportunity to move into community-based settings, which advocates say are less restrictive and more rehabilitative than nursing homes.

Lastly, here’s a transcript of a story on Australia’s 7.30 Report program called Setting Sail:

Known as the ‘Everest of sailing’ the Sydney to Hobart race challenges the most seasoned of yachtsmen on what can be a treacherous ocean voyage.

Most of the focus is on the big maxi-yachts competing for line honours. But a unique crew of blind and deaf sailors is also commanding attention.

The charity organisation, Sailors With Disabilities, has been gifted a half-million dollar fast yacht, making them eligible for the first time in the prestigious Rolex Cup.

Send your links to recreading[@]disabledfeminists[.]com. Let us know if/how you want to be credited. And have yourself a fabulous weekend.

Accessing Sexual Health Part One: Barriers To Getting There

I gave a bit of a talk recently on what I viewed as the barriers to sexual health and education for people with disabilities, discovering that I have a lot of thoughts about the barriers not only to sexual health but to all levels of health care when one is disabled. These can vary from the difficulties in making appointments to waiting rooms where people who use wheelchairs are told to wait in the hallway.

Sexual health is something that weighs quite heavily on my mind. As we’ve highlighted here (and many other bloggers have highlighted elsewhere), people with disabilities, especially women, are vulnerable to sexual abuse.

Over the next few posts (the other two will be available next week), I wanted to highlight some the barriers I perceive in people with disabilities in getting access to sexual health-related care, and I encourage people of any gender, should they wish, to detail out their own struggles or successes in receiving sexual health care. I would remind commenters, though, that people do search and read comments, and if they wish to give their stories anonymously, that’s perfectly acceptable.

The two things I want to highlight today are getting an appointment, and getting into an appointment.

Over the past couple of months it’s been brought intimately home to me how difficult it can be to get a doctor’s appointment for any reason if you can’t use the phone. I’ve been unable to hear very well due to an ongoing ear infection, and Don has a frozen vocal cord, meaning he cannot speak much above a whisper. Trying to book an appointment to get my ear checked has been an effort in frustration: neither my GP nor the ENT clinic I was referred to have any indication of a way to book an appointment that doesn’t involve using the phone.

When I worked in Health Care I did receive relay calls. For those not familiar, d/Deaf or Hard of Hearing people can use relay calls where they use a TTY phone. They contact the relay center via TTY, and the relay center calls the person you wish to speak to. My understanding is that you then type what you want to say, and the relay operator repeats it to the person who you are talking to. They then type up everything the other person says. (The speaking person says “go ahead” when they want the text-part sent.)

[Interestingly, I only learned how to take Relay Calls when I worked in a call center for a major wireless company in the US. No one when I worked in health care discussed Relay Calls or how to handle them, although in my experience the operators were very kind and forthcoming with that information.]

However, phone issues are not limited in any way to people who may be able to take advantage of Relay Calls. Relay Calls are not appropriate for Don’s needs as someone with a frozen vocal cord, for one example. There are also people with audio processing disorders, people who have phone anxiety issues that make using the phone difficult, if not impossible. There are people whose phone-related issues are temporary rather than permanent and thus they don’t have the equipment available to take advantage of something like Relay Calls. These sorts of barriers to accessing health services, especially sexual health services, can cause people to just give up on the whole enterprise.

One solution to this would be for sexual health clinics and doctors offices to consider making people aware of alternative means of contacting them for appointments, be this via email or fax or even an online appointment booking service. While I have no doubt that these are available currently, I have never seen these services advertised. Certainly when trying to book my ear appointments I would have loved to have done it via email, since I couldn’t hear, which made making the appointment difficult.

Another seemingly simple problem that can be a barrier not only to any health service, but any building at all, is the dreaded Wheelchair Lift.

I mean, let’s pretend that every building you’d want to go to for health services was specifically wheelchair accessible (Note: This is not as true as one might imagine.) In many cases, this will mean a wheelchair lift has been added to one of the stairwells.

As many people who use wheelchairs can tell you, wheelchair access is often “in the back”. This can mean that you need to call ahead to let them know that you’ll be there in five or ten minutes and could someone be troubled to let you in? These doors are not always cleared of snow. The one for one of the buildings that Don’s had to enter doesn’t have a full sidewalk going up to it, so he has to deal with mud when it rains. It rains a lot in Halifax.

However, wheelchair lifts, bless them, do not really help a lot of people with other mobility-related disabilities. You can’t use a wheelchair lift if you use a cane. You can’t use it if you use a walker. Occasionally people in these situations will be allowed to use a chair and sit on it while the lift takes them up the flight of stairs, but this is not always something people are willing to do.

Again, these are physical barriers that prevent people with disabilities from accessing health services. They’re not deliberate, but they have long-term consequences that are easy to forget.

Recommended Reading for 25 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?

disability is a feminist issue by Wheelchair Dancer:

This conversation is an icon in the difficult relations of disability and feminism.

Study: Too Many Fat Women Don’t Even Know They’re Fat by Cara at The Curvature:

Trying to define and impose your definition of normal on other people — whether it be in relation to gender, sexuality, physical ability, neurological workings, weight, or some other category entirely, is alienating, damaging, and oppressive. There’s no way that defining people in opposition to “normal” and telling them that they must become normal for their own good is not harmful.

Access and Academia, Again by Liz at Dis/Embody:

Though it’s lamentable that this is necessary, twenty years after the ADA, these cases are exactly the kind of potentially broad-ranging challenges that could strengthen the civil rights protections of the ADA and the accessibility processes used in US institutes of higher education.

Boy With Disability Unable To Leave Apartment by Katie E. at Women’s Glib:

Denial of accessibility is a widespread issue for people with disabilities. Jaime’s education and right to leave his apartment is seen as trivial to the leasing office, but it is very, very important. Why should he be treated as a second-class citizen? Why don’t all people have a right to education?

In a first, Census 2011 to mark people with multiple disability by Surbhi Khyati at The Indian Express:

For the first time in India, people with multiple disability will be a part of Census 2011. The census will not only include the number of people in each disabled category but also recognise diseases like dyslexia and autism as forms of disability.

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

Twice in one day

Do you ever have one of those days where you just want to shake a fist in the universe’s general direction?

A few weeks ago, I had the fairly weird experience of two different people trying to make the fact that I use a cane a topic of conversation (?) on the same day. Usually, when people feel the need to point out the obvious to me — that I use a cane as a mobility aid due to chronic pain — it happens pretty infrequently, maybe once a month. Twice in the same day, though, just felt strange.

Incident one: As I am waiting for the elevator in a building on my university campus, a young woman approaches me and asks me why I use a cane. She’s curious about it, she mentions, because her mom uses one. I reply that I use it because I have chronic pain, and this seems to satisfy her curiosity. I feel oddly relieved when the conversation stops there.

Incident two: I am walking to a coffee shop, and I pass a row of garbage and recycling containers out on the sidewalk on a busy street. A guy rummaging through one of the containers picks that exact moment to look up; he sees me and yells out, “You’re a YOUNG DISABLED LADY!” I am too confused to respond, and keep walking.

I can hear the refrains now: Those people were just trying to be friendly! They didn’t mean anything by it! They were just trying to start a conversation!

Maybe, but that doesn’t stop having the fact that I move differently from most other people pointed out to me in a very obvious manner (as if I don’t already know that, what with using a cane and all) from being annoying as all get-out.

So, the next time you see a person who uses a mobility aid, service animal, or other assistive technology, please remember: If you have the urge to point it out to them and/or try to use it as a conversational springboard, chances are that you probably do not have to do this. We know that we use assistive devices, and that said devices may look odd to people who are not disabled. It’s cool. We totally get it. And, even if you don’t “mean anything by it” by pointing it out to us or trying to tell us about someone you know who also has a disability, we might read your enthusiasm as something else entirely.

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.

Thyroid Cancer Treatment Affects the Abled, Healthy. Everyone Panic!

I have a little bit of a problem with people being handed down a mandate that insists they behave in a certain way or adhere to a certain set of guidelines for which they are not provided the means to do so. Usually, these rules or mandates are set by people whose lives the rules will never affect. I see it all the time here on the Garrison — rules that restrict the lives of military spouses set by Upper Brass who wear uniforms and sit in offices all day being briefed by people who don’t have to figure out how to tote around a couple of toddlers, diaper bags, strollers, car seats in case they might need a taxi while running to appointments, getting groceries, and picking up or dropping off older children at school without having a vehicle. I recently witnessed it in hospital policy regarding patients on long-term controlled substance use (something I should write another post about, eh?) — a pharmacist notices a patient prescribed a certain medication for a certain length of time, alerts a committee who sends out a generic letter triggering a “Single Provider” program without anyone actually meeting the patient involved.

Now, I read that a Congressional committee has noticed that patient being treated with radiation for thyroid cancer have been possibly exposing other people to, yes, radiation.

Well, let’s think about this for a moment. In the past, people who had thyroid cancer and who were insured and who were given this treatment were allowed a hospital stay so that the very strict regimen of sterility could be followed without putting extra strain on the patient. Then, someone got an itch and decided that it was just too costly to keep this up and that these leaches could just go home and do their own laundry every day. Not to mention, I am not sure what they are supposed to do with their garbage, how they are supposed to quarantine themselves from their families if they don’t have separate wings in their homes to live in, or how they are supposed to get home if they are weak from treatment and live alone.

The new regulations are supposed to discourage patients from taking public transportation, from staying in hotels, and from a whole slew of other things that really don’t take simple practicality into account. I think we can all agree that not exposing people to radiation is all around a good idea. I have no idea how much we are talking about, and the hyperbolic pictures of HAZMAT masks on the paper edition article I read didn’t help, but it must be significant if it is causing such a stir. Though, spokesman David McIntyre says it is “unclear” if the levels are harmful.

I remember getting a bone scan a few years ago and the tech had to wear a suit, and the dye they injected into me came in a lead tube. I was told I had to avoid metal detectors and public transit for a few days and was given a card to show that I was recently injected with radioactive substances. But I was a single mother, and a sailor, and I had no one else to help me out. Back to work I went, showing my card to security, who walked me through the non-metal detector way. I picked up my kid from daycare later, and drove myself home. I imagine that someone who has no support system who might be in a similar or worse situation would have to make similar decisions. So, I can see how people would disregard directions to go straight home.

Perhaps home is a day’s drive. Perhaps home is filled with young children and has only one car available. A hotel and train ride might be the only option, since the loosened restrictions mean that insurance will not pay for a hospital room that is no longer required. Or perhaps there is no insurance at all, and it was all a patient could manage to scrape up the cost of the treatment in the first place. There are so many reasons that these restrictions are not being followed, and I feel like this article, this committee, and this investigation are looking more at the people who are ‘violating’ the rules and less at the systemic problems that cause them to do so.

So, yes, those poor, unsuspecting people who have fallen victim to the carelessness of these cancer patients who have been so selfish to expose themselves to the world are who we should be focusing on. They are the true victims here, not the people who are trying to get healthy again, whose bodies are fighting cancer, and living with poison in them, and who are also now having to deal with the extra burden of a cumbersome set of rules of conduct for how to navigate live with a poison inside their bodies. The conversation is not, nor never is it, about them, but about the people around them whose lives are affected by their treatments, the ways those treatments impact their lives. All about the abled body, never the chronically sick or disabled unless it somehow affects the healthy and able.

Unless Congress is willing to establish a way to provide a place for these people to stay — all of them — I don’t see how a more enforced set of restrictions is reasonable. You can’t force a person to stay in a place they have to pay for against their will, and you should not be able to punish them because they had to use the resources available to them to survive.

These are just my own personal musings. I, of course, have no personal experience with these situations, but I grieve at the idea of restrictions that people might not be able to handle through no fault of their own.

I wonder if Representative Edward Markey (D – MA) and the Subcommittee on Energy and Environment are interested in hearing any of our thoughts on this matter while they re-think the policy.

Heel, toe

As I’ve mentioned previously, I have fairly mild cerebral palsy that mostly affects the left side of my body, and my left leg and foot in particular.

I’ve had sort of a strange relationship with my left side, and the foot attached. Because my left leg is a few inches shorter than my right one, my left foot has made a bizarre and ongoing effort to make up the difference. While my right foot moves “normally” — that is, when I step with it, the foot goes fairly flat once on the ground — my left foot moves and rests in a manner that is probably better befitting a pointe shoe. My left foot tends to step forward with the ball of the foot and the toes, instead of having a flat gait like the right foot. As a result of my rather odd gait, I have very thick calluses on both the ball of my left foot and all of my left toes — and no callus at all on my left heel.

With the help of physical therapy, I spent much of my childhood and adolescence trying to make my shorter left leg and foot “match” the gait of its twin — even when it physically hurt to do so. [I should point out here that I most definitely do not mean to knock physical therapy as a whole, which has helped me immeasurably and has been helpful to a great many folks!] One advantage of physical therapy was that it made my left leg stronger, and made my balance somewhat better as a result; though my left side’s balance isn’t amazing or superhuman or all caught up with the right at this point in time, it is better than it was previously. Thanks to my existing mental health issues, before I started having chronic pain issues (which directed my focus to other things — namely, how I feel, physically, instead of whether my body parts “look right”) I was pretty used to mentally raking myself over some very hot coals for not being able to make my left leg as “good” as the right.

At some point, I decided to stop making myself feel terrible about the fact that my leg left and foot will probably never match totally with the right side’s leg and foot. Yes, I walk sort of oddly. Sometimes, I can keep my left heel and leg “down” correctly and am able to move them like they should move; sometimes, I can’t do either (particularly during fibro flare-ups). My left leg is still useful, even if it is skinnier and less-developed than my right. My left foot is still awesome, to me, even if it is kind of spastic, tends to stick out at a weird angle and has calluses in all the “wrong” places. Trying to walk “correctly” has been an ongoing process for me, and the fact that I often cannot do it — and can, simultaneously, be okay with that — has been crucially important to self-acceptance. There is no use, after all, in mentally flagellating myself for not fulfilling what I have found to be an unreachable standard.

Imperfections

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

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

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

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

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

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

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

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

Accessibility Is So Much More Than Ramps

There’s a common idea I encounter among nondisabled people when it comes to discussing accessibility and making spaces accessible to all users. That idea is that as long as there’s a ramp, a space is accessible. That accessibility is solely about ramps, and nothing else, so once you’ve got a ramp in place, you’re covered.

This is, as we know, not true. Not even for wheelchair users; a ramp is only the beginning of accessibility and it’s useless if, for example, all the doorways in a space are too narrow to allow a chair to pass. It’s not helpful if the front entrance is ramped, but as soon as you get inside, there are steps up or down to another area of a building. Or if the bathroom in a space is too small and cramped to use safely. Or if, hey, someone decided to put all the light switches ridiculously high up on the wall.

The universal symbol of accessibility is our old friend wheelie blue:

The 'wheelie blue' symbol of accessibility, an outline of a stick figure in a wheelchair against a blue background

This symbol reinforces the idea that accessibility is primarily about wheelchairs. Now, granted, it would be functionally impossible to come up with a symbol representing all disabilities and all accommodation needs. The goal with symbols like this is to keep them simple, clear, and communicative.

But contrast that with this:

The icon says 'Disability Advocacy: Keeping Doors Open.' Image is of a room, with a floating brain, hands Signing, wheelie symbol, and Braille text

This icon shows the familiar wheelchair user, but also hands Signing, representing the d/Deaf community. And Braille. And a brain, which to my mind (ha ha) reads as a representation of neuroatypicality, for people with intellectual disabilities, for people with mental illness. Suddenly, the concept of accessibility is widened and the concept of different bodies and minds is represented here, reminding the viewer that accessibility goes beyond the ramp.

Wiscon’s accessibility policy is something we often point to here as an illustration of expanding the definition of ‘access’ and trying to work with people with many different kinds of disabilities to make a space comfortable and welcoming for them. It addresses issues ranging from wheelchair-accessible hotel rooms to the need for a quiet space to allergies. It also expands the conversation to talk not just about how spaces can be made accessible, but how people in those spaces can contribute to accessibility:

Offer help–don’t assume it’s needed. Most of us are taught to “help the handicapped” but not “does this person want or need help?” If you think someone needs assistance, just ask. If they say yes, don’t make assumptions; instead listen to the details of what the person with disabilities wants. If they say “no thanks” don’t be offended. What might look overly complicated or inefficient can be what that disabled person finds works best.

Wiscon also thinks about how the programming, the structure of the event, can be adjusted to create accommodations. Making more space between panels, for example, and providing information to attendees about which rooms have florescent lighting. Three facets of accessibility are being considered here: The physicalities of the space, the people in it, and how the programming inside that space is organized. That goes far beyond the way most people conceptualise ‘accessibility.’

Getting people to expand their minds when it comes to accessibility is more complicated than just getting them to think about the fact that there are issues beyond wheelchair accessibility. It also requires people to think about, discuss, and acknowledge conflicting accommodations and how to balance the needs of multiple people with disabilities. Some accommodations automatically exclude people from spaces. Conversations about conflicting accommodations are uncomfortable because we want to make spaces welcome to everyone, but sometimes there’s a fundamental conflict; take, for example, people who need to use essential oils to manage their conditions, and people who can’t be around strong odors or alcohol-based compounds.

Wiscon’s policy includes a statement and discussion about conflicting accommodations, something rather unusual. I haven’t encountered many discussions about conflicting accommodations in the mainstream, although one place I do spot them is online, where some sites have options like switching between a light on dark/dark on light theme or have other configurable options designed to address various disabilities.

Making spaces accessible requires thinking about a lot of things; about how people with a variety of disabilities will interact with a space, about how people will interact with each other in that space, and, often, how to manage accessibility with limited budget options. Many people trying to design accessible spaces may also not really know how to go about it, and they’re not sure about who to turn to. As a result, we end up with situations where spaces are not accessible because no one bothered to ask for input, instead trying to anticipate needs and failing. Often, the burden falls on people with disabilities to demand access and to provide education about how to make spaces accessible, even when that information is already available, with a little bit of searching.

Accommodation should also be provided automatically, without needing to be something that people specifically have to request and ask for. And people need to be provided with information about available accommodations, as this story Anna linked me to recently points out:

One barrier PCR finds is that access officers in universities tend to ask students to tell them what services they require rather than telling the students what is available. The student is at a disadvantage before the first lecture even begins, as they may not know about all the services available.

Considerations about accessibility and accessible spaces should be on the forefront of the mind of anyone tasked with building, arranging, or coordinating a space, not just people who need accommodations, and people need to expand the way they think about accessibility, actively seek out and solicit information to make the spaces they control better. People often seem to think that accessibility is something you add when someone asks for it, which presumes that people with disabilities will always ask for it, when instead, more commonly, we go ‘oh, that space isn’t accessible or there’s not clear information about accessibility, so I won’t bother attending that event.’

Further Conversations On Body Image: Examining Health at Every Size (HAES)

Health at every size is a concept embraced by some fat and size acceptance activists. For those not familiar with it, it was developed popularised (see comments) by Linda Bacon, and simply put, it suggests that there’s a wide variation of bodies and that people should focus on what makes their bodies healthy, rather than on eating and exercising for weight control. There are a number of components of health at every size, including ‘intuitive eating’ and the concept of ‘joyful movement.’

When I initially heard about HAES back in my nascent days of exploring fat, size, and my relationship with my own body, I was excited about it. I’d been reading a lot of stories about the false beliefs about fat and health, and I liked the idea of a movement specifically reinforcing the idea that being fat doesn’t make you unhealthy, since one of the most common charges levied against us fat folks is that we are unhealthy because we are fat, that fat makes people unhealthy.

But then I got sick. Very, very sick. And I lost a lot of weight, and people praised me for it, and I started thinking about the dichotomies being set up with health at every size, and who was being left out of this equation: People who are unhealthy. Many people are unhealthy and also fat, many people are fat and disabled, and the framing of health at every size excludes them.

It’s hard to eat intuitively when you have allergies, or when you have conditions that require you to be very careful about what you eat for other reasons. When you’ve got to plan out your meals and you can’t afford to be ‘intuitive,’ to decide to skip a meal when you don’t feel like eating. It’s hard to eat intuitively also when you have limited energy for cooking and you might not be able to eat when you want, when you want. Or when you’re so sick that the thought of eating at all is nauseating.

As for ‘joyful exercise,’ well, not all bodies want to  move, and not all bodies move joyfully. I know that I personally tend to feel better, emotionally, when I do yoga regularly. Which is great, for me. But I’m not going to tell other people to do yoga; some people find the poses difficult to hold or the experience uncomfortable or just plain don’t like it. For people who like to move and want to move, finding the ways that their bodies move comfortably and joyfully is awesome, but not everyone wants that, and not everyone can reach that. Should someone who can’t exercise be drummed out of the fat acceptance movement?

I want to be clear that not all fat/size activists embrace this concept, and that some of those who do think of it as a framework that works for some people, and not for others, that people need to navigate their own relationships with their bodies rather than being forced to think about them in a particular way, acknowledging the variation of human experience and emphasising the fact that people should not be told how to feel about their bodies. But, for those who accept it as a blanket, one size fits all (so to speak) philosophy, there tends to be an erasure of people with disabilities from the size acceptance movement; we’re not healthy, so right there, we’ve gone and shot a big hole in health at every size, no matter why we are unhealthy, no matter what the intersections (or lack thereof) between our health and weight may be.

Which is unfortunate, because size acceptance needs to work for us, too. Many of the FWD contributors, just for example, are fat to varying degrees, and I know we have a lot of fat readers. Our fat bodies need to be accepted and embraced too and we need to be able to talk about our relationships with our bodies; how, for example, people with poor thermoregulation experience chub rub on a whole new and very uncomfortable level. We need to talk about what it’s like to not be healthy at every size.

I’m not advocating for throwing out HAES. There are a lot of people who clearly benefit a lot from this model and for whom it has played an important role in thinking about their bodies and their relationship with the world. But we also need to find a way to create a space for discussions about fat and disability, for what it’s like to be happy and fat, happy and disabled, sad and fat, sad and disabled.

Hardline HAES advocacy plays directly into the good fatty/bad fatty dichotomy that looms so large in the minds of many of us. The stereotypes about ‘lazy fatties’ take on a new dimension when they are weaponised against people with disabilities who need to use mobility aids, who can’t hop off the couch and start cycling for fun, who experience feelings of guilt and inadequacy about being unable (or unwilling!) to exercise.

A huge part of fat acceptance is the idea that there are no ‘perfect’ bodies and that bodies naturally come in a wide range of sizes, colours, shapes. But bodies also naturally come in a wide range of degrees of disability and health, and that intersects directly with fatness, with social attitudes, with acceptance of the body.

Michelle at The Fat Nutritionist has written about the concept of being obligated to be healthy, pushing back against certain aspects of the HAES narrative:

It is sad that this even needs to be said, but given the fact that we essentially live in a health meritocracy, let me be the first to announce:

You are under no obligation to be healthy.

And, as an addendum: even if you were, eating “well” and exercising wouldn’t guarantee your success. There. I’ve said it. And as much as this might chap the ass of every health promoter out there, I feel that personal agency and a basic sense of privacy are sorely missing from most conversations of health promotion, and from conversations of Health at Every Size.

I’d recommend reading her whole post, as she talks about issues like varying definitions of ‘health’ and the pressure on members of society to be healthy, and poke around her blog a bit if you haven’t already, because this is not her only piece on the obligation to be healthy. Michelle’s work has done a lot for me personally in terms of reframing the way I think about fat and health, and I’m really excited that she’s tried to start a conversation about fat, health, and the shortcomings of HAES; let’s try to keep that conversation going.