All posts by s.e. smith

We Are Not Your Props

Last week, the Internet exploded over the case of Jody McIntyre, a wheelchair user who was pulled out of his chair during a demonstration in Britain in front of a shocked crowd. I saw the Tweets rolling out live as the incident happened, with people demanding to know why the event wasn’t being covered on television; as usual, the coverage slanted towards focusing on ‘dangerous’ and ‘unruly’ protesters, as well as framing the people involved as ‘middle class’ with the goal of writing off the seriousness of the events and erasing the participation of people from the lower class who were up in arms as well.

From the corner of my eye, I spotted one of the policemen from the earlier incident. He recognised me immediately. Officer KF936 came charging towards me. Tipping the wheelchair to the side, he pushed me onto the concrete, before grabbing my arms and dragging me across the road. (McIntyre writes about his experiences)

The case caught attention as a result of being caught on video and went viral; within days, McIntyre had been interviewed by the BBC and mocked in The Daily Mail. This particular incident of police brutality started getting significant traction in discussions about the protests.

Much of the narrative surrounding this incident was righteous outrage. Seeing footage of a 20 year old man with cerebral palsy who uses a wheelchair for mobility being hauled out of it and being left to sprawl in the street sparked rage, and my Twitter feed exploded. It’s wrong, most people seemed to agree, for police to abuse ‘the disabled‘ when they are exercising their rights to peaceful protest. People also emphasised McIntyre’s ‘weakness‘ and ‘helplessness’ although I think he pretty amply demonstrated in his BBC interview that he is far from helpless:

Interviewer: And why then, do you think– Are you saying the police picked on your twice. Why do you think they did?

JM: I have no idea. I mean, to make one suggestion, I think in the second incident at least, I think there’s a clear element of trying to provoke protesters into violence. Personally, I see myself as equal to anyone else, but I do understand that I could be perceived as more vulnerable, so I think there was an element of trying to provoke violence from others.

Numerous incidents of police brutality were documented during the London protests, but this particular case got a lion’s share of the attention because it involved a disabled man. Another protester experienced a head injury so severe that it required surgery.

Which is a curious contrast from the way the left seems to regard other wheelchair users exercising their free speech and assembly rights. Every time there’s a significant conservative demonstration here in the United States, I see people using mobility devices being singled out for special mockery by the left. The liberal ableism starts flying when it comes to people with disabilities doing things the left doesn’t like and we are reminded that we are considered pawns when we express views the left does not like, and heroes when we’re expressing views the left does like.

It’s Tiny Tim season, so of course this case hit a number of sweet spots, as it were. McIntyre was an excellent choice ofcause celebre for nondisabled people angry about the police response to the protests because he was a symbol. An object. Dare I say it? A prop. McIntyre was ‘the disabled.’ It’s generally agreed that being mean to ‘the disabled’ is one of the worst things a person can do and unlike those pesky nondisabled protestors who were abused by police, there is, of course, no rational way he could have posed a threat to police, making his abuse at their hands ‘unjustifiable.’

I don’t know how else to say this because I feel like I have been saying it for years, and no one is listening:

We are not props. We are not symbols. We are not rhetorical devices. We are human beings. We have free will and bodily autonomy.

Every protester in London had a right to not be abused by police. Not just the disabled protester. And every person has a right to express views, no matter what they are, no matter who agrees with them, regardless of disability status. Patting us on the head when we fit with your agenda and then telling us we’re ‘clueless’ when we don’t is patronising, it is dehumanising, and it is wrong.

Jody McIntyre attended that protest in full awareness that police violence had been ongoing at the student protests and he took a calculated risk, knowing it was a possibility, just like every other protester. He’s not a hero or a rallying point because he was dragged out of his chair and hit by police while disabled: He’s a person who experienced police brutality. He pointed this out in his interview:

I would say that it’s very important not to see this as an isolated incident. This is the police’s role at demonstrations. To incite and provoke violence. They’ve done it in the past and they’re continuing to do it now. I am not the real victim here. The real victims are the students, like Alfie Meadows, who is in hospital within an inch of his life after a policeman struck him on the head with a truncheon and he needed emergency brain surgery. Now imagine if it was Prince Charles, or Camilla, or a police officer who had been within an inch of their life.

He attended that protest because he had something to say:

“[The police] are out of control,” he said. “I have just as much right as everyone else to protest. My 16-year-old brother now believes he will be unable to go to university because of the higher fees involved.” (‘Footage shows protester dragged from wheelchair‘)

Every time our disabilities are used to leverage pity and other emotions, it’s a reminder that people think of us as consumed and defined by our disabilities. If McIntyre hadn’t been in a chair, he would have gone down with scores of other nameless protesters who were abused by police. If his abuse hadn’t been caught on video, a handful of enraged Tweets would have been the sum total of the matter. Instead, people are trying to leverage him to make political points.

This case is rare; usually when we are used as pawns to advance agendas, we are not allowed to speak for ourselves. McIntyre has been interviewed and given a voice and an opportunity to push back on some of the narratives surrounding him, breaking out of the prop mold people want to shove him in. Most of us don’t have that chance.

I’ll leave you with this:

As a result of events on the 9th December I will be pursuing legal action against the police. But I do not because I see myself as a victim. The real victims are the likes of Alfie Meadows who was hospitalised as a result of his injuries. We need justice not only in my case but also in Alfie’s case and anyone else who’s suffered in this struggle.

While this condemned government continues to promote values of inequality and attempts to widen the gap between rich and poor, I will speak up for those who do not have a voice. (‘Who’s apathetic now?‘)

Disability Is A Feminist Issue: Gendering Health Access

When I tell people I write for a feminist site focusing on a disability issues, one of the most common responses I get is confusion. ‘What does disability,’ people ask me, ‘have to do with feminism?’ I’ve written before, very topically, about why disability is a feminist issue, and I’d hope that a lot of the content on this site backs that assertion up, considering that we’ve talked about a number of issues considered important in the feminist movement, like reproductive rights and rape, just to name two examples.

But I’d like to spend a little time drilling down into some specific aspects of disability and living with disability that tie in with feminism, very strongly, because I continue to encounter pushback when it comes to integrating disability into conversations about feminism.

Today: Gendering when it comes to access to health care and disability services. Gender inequality is a core issue in feminism and it can be seen especially clearly when it comes to disability issues, which is one reason I’m always surprised to see that people don’t consider disability a feminist issue. I’m not talking here about the gendering of disability itself, which also occurs and is a separate issue that really needs its own post to do it justice. I’m discussing gendering when it comes to who can access health care and what kind of health care people can access, and how that plays out for people with disabilities.

Let’s start with the fact that, in the United States, to access health care, you need money. You need money to pay out of pocket, or you need money to buy insurance, or you need the kind of job that includes insurance as a benefit (we’ll talk about who can access government assistance, including health care, in a moment). Guess who is likely to have less money? Women. Women of colour and nonwhite women in particular are on the bottom of a pretty incredible income disparity as a result of intersecting oppressions. When women get sick, when they are injured, when they acquire disabilities, they are less likely to be able to access treatment because they cannot afford it, they are less likely to be able to adhere to treatment because over the long term it is expensive, and they are more likely to experience complications because of issues like caring for children, trying to deal with poor access to food, and other things while also trying to get better.

Outside the United States, money can still be a profound determiner when it comes to accessing health care, because money is tied in with so many things. People with money are more likely to have pursued advanced education, to be informed about health issues, including the early warning signs of conditions in need of treatment. People with money can access care the government doesn’t cover, can afford private hospitalization, can pursue treatments that cost a lot of money, and can persist through a health crisis when it comes to demanding and getting treatment. People with money can afford that supplemental private insurance that may make the difference between being turfed off in a corner somewhere and given actual treatment. Money talks, worldwide, and women are less likely to have it, less likely to hold it, less able to earn it.

But, but, poor women can go on government assistance! Then they don’t need money to pay for health care, so everything is ok. Yeah, except, the income standards for government assistance are hopelessly skewed and hopelessly wrong. Women have to be not just poor, but really poor to quality for government assistance, and they have to stay poor. Disabled women who apply for government benefits must be willing and able to jump through a number of hoops on command; they need to pull together reams of supporting documentation, to prove they are disabled enough, and guess what the government really doesn’t like paying out benefits on? Conditions like Chronic Fatigue Syndrome and fibromyalgia, which disproportionately impact women and are often dismissed as ‘not real disabilities,’ so even after doing everything right, these women might still be denied benefits.

For women who can get on disability, it’s a lifetime of poverty. The government has very strict limits about income and assets for people receiving benefits, which means that disabled women can only work very limited hours, can’t save money, and certainly can’t own any meaningful assets. ‘But they don’t need to, they’re on benefits.’ Well, poverty tends to intersect rather dramatically with a lot of feminist issues; how do you escape an abusive partner or caregiver when you have no money in savings and you can’t afford a hotel, a deposit on a new place, bus fare out of town? How can you plan for your future when you can’t save any  money? How can you pay for treatment the government doesn’t cover when you have no funds? How do you buy the meds everyone says you have to take to be a ‘contributing member of society’ when they cost hundreds of dollars every month and the government delays your benefits for mysterious reasons all its own?

Accessing health care also requires time. You need the time to sit on the phone to make appointments. You need time to go to the doctor’s office for evaluation, time to go to the pharmacy to pick up prescriptions, time to perform prescribed exercises at home, time to argue with insurance companies about benefits. Time is something women tend to lack access to because they’re often juggling a myriad of tasks. Or they’re working in the kinds of jobs where asking for time off to get medical care is frowned upon. Or they’re working multiple jobs to afford to stay alive and can’t figure out where to fit a doctor visit into their schedule. Or they have young children whom they can’t leave alone, but can’t take to the doctor, either.

And let’s talk about the fact that a number of health conditions are underdiagnosed or diagnosed too late in women as a result of gendered ideas about who gets what. Heart attacks, for example. Are often not diagnosed in women both because they are believed to be a ‘male’ health complaint, and because heart attacks in women present differently than they do in men. This means that women are more likely to experience complications from heart attacks, if they survive, because they weren’t identified early enough.

Drilling down, we can see that certain classes of people wait longer for treatment and are often provided with inadequate care when they do receive it. Often, women are among these groups; for instance, women of colour/nonwhite women and poor women tend to experience delays in accessing breast cancer treatment.  It’s notable that breast cancer is a very popular social cause, yet there are still significant disparities in terms of who can access diagnosis, treatment, and support for  breast cancer.

This is a feminist issue. Women are dying, right now, all over the world, because they can’t get the care they need, and when they access care, they are treated unequally. For women with disabilities, the gendering of health care access creates a lifetime of barriers that don’t need to be there, from being told you ‘aren’t really’ disabled to being denied care on the grounds that the problem you’re having ‘doesn’t happen to women so it must not be happening.’ Gender disparities in health care access and treatment have very real and meaningful consequences for women who are sick, as well as disabled women. They can literally be the difference between life and death.

Tell me that’s not a feminist issue. Go on.

Disability and the House Key: Housing Discrimination, Disabilities, and Where the Law Falls Short

This post originally appeared on this ain’t livin’.

A 1988 amendment to the Fair Housing Act in the United States specifically banned housing discrimination on the basis of ability status. Under the law in the United States, landlords, mortgage lenders, and management companies legally cannot discriminate against people with disabilities when it comes to renting and selling housing. ‘All types of housing transactions,’ according to the Department of Justice, are covered.

Specific provisions are included to oblige landlords to make ‘reasonable accommodations.’ If housing has a no pets policy, service animals must be permitted. Tenants who need to make modifications to make their residences accessible must be allowed to do so, although landlords are not required to pay for them. Other accommodations that might be necessary must be permitted, under the law, if they withstand the ‘reasonable’ test.

Provisions were also specifically provided to regulate construction of new housing. Landlords are not required to retrofit old housing, but companies building new housing must build it in ways that meet accessibility standards. At multiunit developments in particular, apartments designed to accommodate wheelchair users must be designed and implemented. This is designed to increase housing access for people with disabilities in the future, and it also benefits older adults, who are not necessarily disabled, but do appreciate modifications made for people with disabilities, like shower chairs and grab bars.

So, under the letter of the law, housing discrimination shouldn’t happen to people with disabilities[1. And families, and people of colour, and on the basis of gender.]. Yet, in actuality, discrimination happens all the time. The Department of Housing and Urban Development released a study in 2005, ‘Barriers at Every Step[2. No, the irony of this title is not lost on me.],’ documenting discrimination against people with disabilities. Using a time-honoured HUD technique known as paired testing, HUD used functionally identical applicants for housing, one disabled and one nondisabled, and compared responses.

What they found is that, well, landlords discriminate against people with disabilities. Realtors discriminate against people with disabilities. So do mortgage lenders. Management companies. Workpeople. All sorts of people involved in housing transactions. As many people with disabilities could have told HUD if they were asked, and as many did in reports to the agency documenting discrimination and asking for help.

Sometimes, housing discrimination is the small cut. It’s arriving at a house for rent and seeing that there’s a step to the door, a bathroom too narrow to wheel a chair into, stairs. In housing that’s actually accessible, it takes the form of turning in endless applications and being assured ‘you’ll get a call’ or ‘oh, we just rented it,’ it’s being asked probing questions about disabilities, ostensibly to see if you can afford the rent, but really with the goal of prying and snooping. Deaf applicants with landlords who refuse to communicate with them. Applicants who ask if they can make a reasonable modification, say, like installing a ramp to get in the front door and being told ‘no.’

This isn’t legal, but it happens anyway. Just like it’s not legal to refuse to rent to a single mother, or a young Black man, or a woman, on the basis of those traits alone, and it happens anyway. Housing discrimination is widespread and it’s entrenched. A lot of landlords are ignorant of the fact that there are laws governing this kind of activity, and others know, but don’t care. Because they know it’s highly unlikely that these laws will be enforced. They can continue on their merry discriminatory way as long as they like.

Few people report housing discrimination, because, when you are searching for a place to live, reporting discrimination isn’t high on your list of priorities. You sigh and cross that information off your list, you tell friends not to bother with that house if it comes up for rent in the future, and you move on. You’re struggling to pack, and get organised, and deal with a thousand tiny details that aren’t going to go away on their own. You don’t have time to file a discrimination complaint. To pull together the documentation. To go through questioning and court and investigations. You are too busy trying to survive.

There are occasional victories, which shouldn’t have to happen at all because the victims shouldn’t have been discriminated against in the first place, but these victories are thin on the ground. HUD uses what funding it can to identify and pursue egregious cases, in addition to following up on complaints filed by people who experience housing discrimination, but it can’t keep up. No one could keep up.

Because this is all the result of entrenched social attitudes. Combating discrimination with laws is great, because those laws provide a framework for identifying, investigating, and prosecuting discrimination, but legislation alone cannot be relied upon to address issues like housing discrimination. As long as people genuinely think that people with disabilities are bad people or difficult tenants or unreliable or ‘difficult,’ they are going to continue refusing to rent to us, refusing to grant us loans, refusing to show us houses for sale.

We need a two pronged approach, which is why I applaud organisations that are working on public outreach and education to familiarise landlords with the law so that they can learn, you know, why legally they should not do this, while also providing people with education about why it’s not ok ethically, as a human being, to engage in housing discrimination. These programs realise that the only way to stop housing discrimination is not with a law, is not on a case by case basis, but rather by actively fighting social attitudes that contribute to discriminatory beliefs and practices.

Our housing options are limited by so many things. Many of us don’t make very much money, and can’t afford the cost of living. Many of us have disabilities that render many types of housing inaccessible. Must we also endlessly combat discrimination from landlords and other people of power when it comes to property transactions?

Deportation by Default, Part Two: United States Wrongfully Deports Disabled Citizen

In July, a study was released discussing disabled immigrants and revealing some alarming facts about who is in immigration detention in the United States. I wrote about it here, and the numbers were pretty astounding. The study uncovered the fact that 15% of the people in immigration detention in the United States had disabilities that impaired their ability to understand immigration proceedings. They were unable to defend themselves in court and unable to understand their legal rights. Some were kept for years in detention while officials debated what to do with them.

Immigration law is one of the most tangled areas of law in the United States. The system is complex and labyrinthine and it’s extremely difficult to navigate. It’s even harder when you’ve been held in detention for weeks, months, or years and you’ve been provided with inadequate care; being in confinement is stressful, and can exacerbate mental illness for some people, making it even more challenging to make your way through the court system. The ACLU set out some immediate demands in their report to get better protections for disabled detainees; as far as I know, those demands have not been met.

The report also documented cases of US citizens with disabilities who were deported because they were the wrong colour and they were unable to defend themselves in court. Just last week, I read a followup on a case I discussed; the American Civil Liberties Union is suing on behalf of Mark Lyttle, who was deported and left to fend for himself in Mexico, Honduras, Nicaragua, and Guatemala for four months before he was able to get assistance from a US embassy. This case has been dragging on for over a year.

Lyttle is of Puerto Rican descent, but he’s lived in the United States his whole life. He only speaks English. The government knew this when they deported him:

The U.S. government admitted in April that it had wrongly deported an N.C. native, but newly released documents show that federal investigators ignored FBI records and other evidence showing that the man was a United States citizen.

At the time of Mark Lyttle’s deportation, immigration officials had criminal record checks that said he was a U.S. citizen. They had his Social Security number and the names of his parents. They had Lyttle’s own sworn statement that he had been born in Rowan County. (source)

His story started when he was briefly jailed for ‘behavioural problems’ in a home for people with mental illness. Officials referred his case to Immigration and Customs Enforcement (ICE) despite being aware that he was a US citizen. ICE detained him, investigated, denied him legal counsel, and deported him to Mexico.

As he drifted homeless and penniless through Central America, he was unable to access the medications he was taking to treat his mental illness. Unstable environments contributed to a deterioration of his mental state. He considered suicide. He was imprisoned by multiple sets of officials and deported a second time when he managed to re-enter the United States. Finally, after reaching an embassy, his family was contacted and he was brought safely back into the United States.

There are layers of problems with this case. There’s the documented issue that ICE fails to serve people with disabilities in immigration detention, making it impossible for undocumented immigrants, documented immigrants, and wrongfully detained citizens alike to make their way through immigration proceedings; it’s pretty much impossible for anyone to self-represent in immigration court, let alone someone who is disabled, isolated, frightened, and not getting adequate care. It’s clear that a better system needs to be put in place to screen people when they enter detention so they can be provided with adequate services, if we are going to be detaining people at all.

And there’s the problem, not restricted to people with disabilities, of deporting people simply because they appear to be undocumented immigrants. If you have brown skin, if you ‘look Mexican,’ whether or not you are, whether or not you have documentation, there is  a potential risk of deportion. ICE raids in workplaces across the country have swept up legal immigrants along with US citizens, including some people who have never been outside the US. Despite ample documentation, these people have been deported. Because they look wrong.

Cesar Ramirez Lopez, a San Pablo truck driver, won a $10,000 settlement in 2007 after he was held for four days by U.S. Immigration and Customs Enforcement agents even after his lawyer convinced ICE investigators that he was a citizen.

Rennison Castillo, a Washington state man who was born in Belize but took his oath of citizenship while serving in the U.S. Army in 1998, who spent seven months in an ICE prison in 2006. He is suing the government with the help of the Northwest Immigrant Rights Project in Seattle.

Some longtime observers of the immigration agency say that, while citizens make up a tiny fraction of the roughly 400,000 people who pass through ICE custody each year, such cases occur with some regularity. The problem is exacerbated, they say, by the fact that immigration detainees, unlike those in the criminal justice system, lack the right to legal counsel and other due process protections. (source)

One of the cornerstones of the legal system in the United States is supposed to be the premise that people are innocent until proven guilty. Yet, in the case of deportation proceedings, people are…guilty until deported. Denial of basic legal rights to people in immigration detention is a travesty and a human rights violation. People are intimidated into complying with deportation proceedings:

The young man was bullied into signing a form authorizing his voluntary deportation, except that it wasn’t made clear to Delgado that by affixing his John Hancock he was okaying being shipped off to Mexico. His belief was that he would be allowed to return home in Houston if he just did as he was told. (source)

This is a problem that goes far beyond the issues with disabled detainees in particular. The current state of our immigration system is a travesty that needs to be addressed; it is a foreign policy issue, it is a human rights problem, it is a fundamental violation of everything the United States claims to stand for. Providing basic legal rights to all people in immigration detention should be an immediate priority for the United States, because this has got to stop.

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.

Conversations About Body Image: A Place at the Table for Me?

Conversations about body image come up often in feminist communities, and unfortunately, many of those conversations are predicated on the dual ideas that all people should love their bodies and that lovable bodies are healthy ones. This can be seen in the language used by campaigns designed to get people thinking about body image; I can’t tell you how many ‘positive affirmations’ I have encountered that say things like ‘love your body, because it is beautiful, healthy, and strong.’ I guess people who don’t have healthy or strong bodies can’t love them, or people who actively reject beauty can’t love their bodies either. And, of course, this reads like a mandate: You must love your body, because the idea of not loving your body is highly alien, as is the idea of feeling neutral about or disassociated from your body.

For people who may dislike their bodies, for any number of reasons, these conversations end up being exclusionary, as they are often treated as ‘unenlightened’ for not loving their bodies and they are lectured in an attempt to get them to submit. For people with disabilities, an added layer of complexity is introduced, as it is assumed we do not or could not love our bodies because of our disabilities. Similar complexity can arise for some members of the trans community, who may experience inner conflict with our bodies but feel uncomfortable expressing it, for a variety of reasons ranging from fear of being perceived as spokespeople for the trans community when we are just talking about ourselves, to fear that discussing dislike/hatred for one’s body is not acceptable. Especially when encountering campaigns mandating that people love their ‘natural’  or ‘inner’ beauty, I am left with more questions than answers.

I was reminded of this by ‘Black Torso,’ the piece I featured in my post on sculpture last week. What, for example, is a breast cancer survivor who chooses to get reconstructive surgery supposed to do? The rebuilt breast is not ‘natural,’ so does that mean the patient does not love ou body? What about the breast cancer survivor who cannot afford reconstructive surgery or is not a candidate for it? Maybe ou hates the scar and is uncomfortable looking in the mirror, but feels unwelcome in body image discussions rooted in the idea that ‘love’ is mandatory for all people when engaging with their bodies.

I’d like to start deconstructing conversations about body image to make a seat at the table for people who might feel relegated to the fringes of those conversations right now, and there are a couple of angles that need to be considered with more care in conversations about body image and in campaigns designed to spark conversations about body image.

The first is the idea that everyone must love their bodies. Not all people love their bodies and they should not be required or pressured to; indeed, we should be actively creating a space for people who aren’t comfortable with the bodies they are in that doesn’t consist of ‘we will educate you into loving your body.’ We should talk, too, about the reasons why people may experience conflict with their bodies, and how social attitudes, life experiences, and other things may play a role in the relationship people have with their bodies, without singling out people or shaming them for not loving their bodies, or not loving them all the time.

The second is the idea of ‘healthy, strong, natural’ bodies being celebrated in these campaigns and focused on in language about body image. The fact is that not all bodies are healthy, strong, or natural. Health is something that changes over time from person to person, and while some people may always have healthy bodies, others do not. ‘Natural’ is also not necessarily something everyone possesses, and I dislike the idea that a body needs to be ‘natural’ (who is defining this, incidentally?) in order to be celebrated.

Finally, we have these really complicated intersections between body image and disability, compounded by a lot of social attitudes about disability. Disability is scary, so disabled bodies are scary, and I notice that many body image conversations leave out people with disabilities, because no one knows what to do with us. Looking through many of the responses to the American Able art project, I was struck by the fact that many people were uncomfortable with viewing a disabled body, especially in the context of desirability. If our bodies are so frightening that people can’t see them on television and in ad campaigns, it shouldn’t surprise me that people have trouble fitting us in to discussions about body image.

There doesn’t seem to be a lot of room, in body image conversations, for people who may feel conflicted about their bodies, for people who reject a lot of the ‘affirmations’ promoted, for people who may not fit into the categories some participants in these conversations assume apply to everyone. Are there exceptions to these rules? Conversations where people are thinking about issues like disability and the rejection of beauty? Yes, there absolutely are, but they are exceptions, not the norm, and that is a trend I would like to reverse.

This is what we talk about when we talk about working towards the neutral place; creating a space where bodies and identities are neutral, so there is room for everyone, room for all relationships between people and their bodies, room for people at all levels of exploring their identities and their bodies.

Normalising Accessibility

The radio station I’ve been listening to for most of my life has a habit, when announcing community events, of indicating whether they are accessible. This generally refers specifically to wheelchair accessibility, although I have heard announcers address other things, like chemical sensitivity, depending on the announcer and the event. The point is, my whole life, whenever I hear community events announced, it has been announced with a note about accessibility. That kind of does something to a person, you know?

The announcers put accessibility in the same rank of importance as event information like where the event is, when it is, what is happening, how much it costs, and who to contact for more information, tickets, reservations, and so forth. As it should be. Because all of this information could determine whether someone can attend; if something is happening this Friday at 1:00, for example, I can’t go, because I’m meeting a friend for lunch. If it costs $40 USD, I can’t go, because that’s more than I want to spend. If it’s in Lakeport, I can’t go, because I don’t want to drive that far…and so forth. The whole point of an event announcement is to provide people with enough information to determine if they want to go to an event, and if they can attend.

I mentioned the fact that the radio station does this on Twitter and got a number of intrigued responses, and the thing that struck me was how radical people thought it was, that the radio station would make a habit of including accessibility notes on event announcements. For me, it’s commonplace, and I expect to see accessibility discussed on posters and other event announcements because I’ve been socialised to expect it; a big part of the reason for this is that I live in Northern California, very close to the Bay Area, where there is a highly active disability community that has agitated long and hard for things like this. In my own town, Fort Bragg, I can’t say accessibility is great. There are a lot of issues I’ve identified and I’m sure there are many more I haven’t. And I’d note that some events here are very bad about providing accessibility information on posters, and are shocked, simply shocked, if I contact organisers to ask, so I’m not pretending that accessibility notes are universally provided, or universally useful, in my little hippie paradise. But they are there.

Accessibility notes, to my mind, serve two important functions.

The first is that they provide a service for people with disabilities. You can know, right off the bat, whether you can attend an event, especially if organisations make a point of using comprehensive accessibility notes. For example, the radio station just aired a spot on a film screening that sounds interesting. It is in an accessible venue, but is the film captioned or will there be an interpreter? Is there an audio description available? This was not mentioned. Having complete notes about accessibility saves people the trouble of making a phone call/sending an email, and also avoids the  potential situation where the person on the other end says ‘oooooh yeah, our event is totally accessible’ and you get there and find out it’s not. I think accessibility information should be default with any event announcement; you wouldn’t announce an event without the date, right?

The second purpose, one I was discussing with Anna recently, is that accessibility notes remind people that we exist. Every time you hear an announcement saying something like ‘this venue is not wheelchair accessible,’ that sends a message. Hey, there are people who use wheelchairs! Hey, they can’t get into this event! That’s not cool! Encountering accessibility notes reminds people to think about the accessibility in their own lives and it acts as a quiet reminder; I mean, really, who wants to be the person running an event accompanied with radio announcements basically saying ‘wheelchair/scooter users, parents with strollers, and possibly people with mobility impairments not welcome’?

Another area where I have noticed accessibility notes coming up more and more these days is on recipes online. In part, that’s because I tend to hang out with other people with disabilities, so it’s not like accessibility notes are a Thing in the broader online cooking/recipe exchange community, although they should be. Seeing those notes reminds people that, hey, some people with disabilities like to cook, and, hey, it is really helpful to be able to skim the notes at the top of a recipe to see if you will be able to prepare it. After all, most recipes indicate if they are vegetarian/vegan these days, and many provide notes about common allergens like wheat, dairy, and soy. All this information is considered important because it will determine whether you can make the recipe, so why not add an accessibility note? Something like ‘you will need to lift a heavy stockpot full of water from the sink to the stove’ can be a dealbreaker. (Unless you have one of those rad flexible hose things that lets you fill pots right next to the stove, in which case, can I move in?)

Having accessibility notes does not create universal access. But it’s certainly a step in the right direction, of getting people to think beyond ‘special treatment‘ by positioning accessibility as something broadly relevant to most people, and something of equal importance as ‘who, what, where, when, why, and how.’ Which, for many of us, it is.

In Case of Emergency, Break Glass: People With Disabilities and Disaster Preparedness

Last week, Hurricane Earl appeared to be bearing down on the Eastern Seaboard on the United States, and there were a number of stories about communities preparing for evacuation, or weathering out the storm. Watching the news unfold, I noted a pretty glaring absence in the coverage: Any discussion, at all, of people with disabilities. Ever since Hurricane Katrina, the US government has been aware that there are significant gaps in disaster preparedness planning for the disabled community. Several reports since then have suggested that, despite policy changes, most communities are still not ready to deal with the evacuation of their disabled residents.

What this boils down to is that people with disabilities get left behind in disasters. If they weather the disaster itself, they are left without any support networks, for as long as it takes to reestablish community services. For people dependent on electric medical devices, this can translate into death within hours or days as electricity services are cut and backup power sources dwindle away, one by one. For others, it means sitting for days without access to food, medications, and basic hygiene services.

‘Be prepared,’ they tell us. Establish an evacuation plan. Don’t plan on depending on family or public services. Stock up on at least a week’s worth of medication. Register with community organisations (ok, I guess, you can depend on some public services?). If you rely on electric medical devices and need services like dialysis, find locations where you can access electricity and the health services you need. Set up multiple failsafes, multiple friends who will check in on you.

And, you know, all this sounds great, in theory. But how does it work out in practice?

Let’s say that you have a degenerative neurological disease and you spend most of your time in bed. You cannot sit upright, walk, or stand. That means that, if an evacuation order comes through, you need transport that can accommodate you. That transport? Can cost thousands of dollars, one way. Assuming you can access it, which is not a guarantee, because transport services may not be running or may already be booked. Are you supposed to maintain a $30,000 USD adaptive van in the garage in case you need to evacuate at some point?

Let’s say you, like most people with disabilities, are living near, at, or below the poverty line. How are you going to stock up on a week’s worth of expensive medications and supplies? Or you, like many poor folks in urban areas in the US, regardless of disability status, do not have a car. You are dependent on public transport for evacuation. You can’t ‘just get out’ and you certainly don’t have a car packed with evacuation supplies. You are limited to what you can carry. Your friends don’t have cars either. How are you supposed to pack a 50 pound extra battery for your chair, again?

You may have limited friend networks, and many of your friends may be disabled as well. You all need help to evacuate in disasters. You can check in on each other, but none of you can help each other evacuate. What if you’re in a remote, rural area and the closest dialysis center is hundreds of miles away? What if there are no community organisations in your area or, you call to register with them and they say they can’t help, don’t take people like you, have no resources for people like you? What if you call around to emergency shelters and they aren’t accessible, don’t have backup generators for power? What if you can’t communicate with the people running evacuation services and emergency shelters?

There’s a long list of ‘what ifs’ that deconstruct the supposedly ‘easy’ process of planning ahead for a disaster. Every single disaster preparedness guide for people with disabilities I’ve looked up starts with ‘make a plan,’ but doesn’t really provide information on how to make that plan, what to do if it’s functionally impossible in your community to plan. How can people be expected to ‘just make a plan’ when they lack access to basic services even when there’s no impending disaster?

A common stigmatisation ploy used against people with disabilities is that we are ‘dependent’ on the government and rely on the government for everything. But, when it comes to survival, we are reminded in disasters that we actually cannot depend on the government. People with disabilities are told that there are no measures in place to assist them during evacuations, and they need to make their own arrangements. Functionally, that results in being left behind to ‘weather it out’ and hope that, when emergency responders finally start arriving, they can enact a rescue before it’s too late. It’s too expensive, evidently, to include us in community disaster planning.

We won’t even talk about what happens after the disaster, when people with disabilities have a harder time recovering than the general population. Just making it through a disaster at all is a feat, given the way the deck is stacked against us. The government is working on making disaster planning more inclusive, but it’s not working fast enough. It’s another reminder of the impact social attitudes has on policy; we are an afterthought, we are demanding ‘special treatment’ when we ask to be evacuated to safety with the rest of the population.

What kind of disaster planning is available in your community? If there is a disaster, what will happen to you?

California Judge Says State of California is Still Providing Inadequate Health Services to Inmates

Currently, health care in California’s prison system is under court supervision, in the aftermath of a lawsuit pointing out that conditions were so poor in California’s prisons that an average of one inmate per week was dying due to inadequate health care. Huge numbers of people in California’s prisons are disabled; just for example, people with developmental disabilities make up around four percent of California’s inmate population. This adds considerably to the complexity of providing health care services in California prisons, as does the very high rate of infectious disease observed in most prisons.

The state recently attempted to end the receivership of its prisons on the grounds that conditions had improved. More studies were conducted to assess the current situation, and Judge Charles Breyer issued a tentative ruling that the court supervision must continue because conditions in many California prisons still do not meet basic standards of health and safety. The human and civil rights of California prisoners are being violated, in no small part because the state is struggling with a massive prison population paired with epic budget cuts, which is pretty much a recipe for disaster.

Here’s the judge, discussing why he decided not to end the receivership:

Breyer, brother of U.S. Supreme Court Justice Stephen Breyer, went further in his proposed findings.

The inmates “are regularly verbally, physically, and sexually assaulted, exploited, and discriminated against in California prisons,” he wrote. “Developmentally disabled prisoners are punished for violating prison rules that they do not understand, and are punished at hearings which they cannot comprehend.”

They regularly have their food and property stolen, or give it up to buy protection or help from other inmates. They often lack the help they need with basic hygiene, or with getting routine medical treatment, the judge found.

At one point, Breyer suggested that the state sought to end his oversight “simply because ongoing Court supervision is annoying them.”

Billions of dollars are being spent, and it’s still not enough. Of the 17 prisons expected, only two ‘met the minimum standards for health care.’ Perhaps unsurprisingly, one of the biggest areas of failing was in preventative care. The prison environment is stressful and crowded, which tends to increase susceptibility to infectious disease while also making inmates more prone to the development of mental health problems. For intellectually and developmentally disabled inmates, prison conditions are even worse, as many prisons don’t know how to handle these inmates, don’t provide basic services they need, and essentially leave them at the mercy of the general population.

It’s not surprising that HIV, tuberculosis, and hep C infection rates are all on the rise in prisons as a result of poor preventative care and infection control. We should be asking ourselves when it was decided that a prison sentence should also came with an almost certain sentence for developing an infectious and potentially fatal disease, just as we should be asking ourselves why prison rape continues to be tolerated.

Prisoners are not receiving the health care services they need, when they need them. That’s a problem. It’s a problem when the state is imprisoning people in my name, using my tax dollars to fund it, and it can’t even promise me that those people will have access to basic health care services. It can’t promise that the people being imprisoned ‘for public safety’ will be safe themselves in prison, and this is categorically unacceptable. We owe a duty of care to prison inmates, no matter who they are, no matter what crimes they have committed, and prisoner rights is one of the most ignored areas in the human rights community in the United States. The conditions in California’s prisons can be seen elsewhere across the United States, where prisoners die because they can’t access medical care in addition to being raped, exploited, and abused.

The findings of the report on California’s prisons recommend that the most effective way to improve access to health care for California inmates is to reduce the prison population by releasing inmates. Early release has already been promoted to deal with overcrowding as well as budget problems. However, we also need to approach this from the other side; it’s important not just to reduce the prison population, but to put fewer people in prison in the first place. This requires a major overhaul of California’s mandatory sentencing laws and approach to law enforcement, both of which are long overdue.

There are also colossal intersections with race here. Nonwhite people and people of colour are far more likely to be incarcerated in the United States. This is not because members of these communities are more likely to commit crimes, despite the beliefs of some conservatives. It is because they are more likely to be profiled as criminals, more likely to be arrested and prosecuted when a white person would get a warning, more likely to get longer prison sentences, more likely to be convicted. We need to address the racialised dynamics of the ‘justice system’ in the United States to get at the bottom of why so many people are in prison.

I’m glad that the decision to continue court supervision of health services in California prisons was made. It’s clear that the prison system can’t regulate itself or provide the services it is legally and ethically obligated to provide, and I hope the court can compel it to do so. At the same time we work to secure safer and healthier conditions for prisoners now, I want to see a radical shift of the way we handle law enforcement and justice for people in the future.

Betty Anne Gagnon and Murder Most Foul

Content note: This post includes discussions of the murder and abuse of people with disabilities.

Betty Anne Gagnon was 48 years old when she was found curled up in the front seat of a pickup truck in the parking lot of a petrol station near Edmonton, Canada, in November 2009. Her face was heavily bruised and her body bore clear evidence of abuse.

She was dead. The coroner determined that blunt force trauma to the head was the likely cause of death. That was, in the literal sense, the cause of death, but what actually caused her death was ableism.

Betty had developmental disabilities. For 14 years, she lived independently with a caregiver in Calgary, but later moved in with her sister and brother-in-law. During the almost five year time period before her death, she was confined in a cage made of chicken wire, and forced to sleep in a tent smeared with her own feces. Or locked in a dog run in the yard. Or in a decommissioned school bus. Her ‘caregivers’ openly admitted this at the inquest into her death, where they described leaving her in the unheated bus with no toilet facilities, and they talked about the events in the hours before she was left to die in a parking lot, about how she was cold and struggled to breathe. Oh, but they called emergency services for help after they dumped her.

They are being charged with manslaughter, ‘unlawful’ confinement, and assault. I understand how the law works, and how the statutes are organised, and I understand why they cannot be charged with murder, but this was murder. It was murder after years of dehumanisation and abuse. It was murder. It was the complete and utter, total devaluation of human life.

Last week, a vigil was held to honour her, and to draw attention to the abuse of people with disabilities. As attendees at the vigil pointed out, caregiver abuse is common, it’s not commonly addressed, and sometimes it ends in cases like this.

The thing about cases like this is that they are endless. Every week, it seems, I am reading about another person with disabilities being murdered by ‘caregivers,’ and these cases drop off the radar very quickly, but I remember them. We remember them. We also remember the narrative that surrounds most of these cases, where we are reminded that caring for people with disabilities is such a burden and there must have been circumstances involved that we don’t know about, because how could we, it’s so hard to be a caregiver.

Of course, none of us are caregivers. It’s either/or, right? You are either a person with disabilities, or you are a caregiver.

I always thought, personally, that it’s pretty hard to dehumanise people, but apparently the media has no problem doing that. Very rarely do cases like this stress that there was a person involved, a human being, who is now dead. Dead because of social attitudes about the value of disabled lives, dead because of narratives reinforcing latitude in circumstances, dead because no one reported the abuse or because if someone did, the report wasn’t taken seriously. Dead because, sometimes, the media treats murderous ‘caregivers’ like misunderstood heroes.

It is sickening, and I mean that in a physical sense, to read article after article about people killing people like me, and getting away with it. And it is enraging to see how little coverage these cases get, a throwaway that happened to pop up when I happened to look at the screen, and would have missed otherwise. How many other devalued lives have been snuffed out without any awareness on the media’s part at all?

Betty Anne Gagnon was a human being. She had feelings, memories, experiences, and life. And that was taken from her because of her disabilities, because people determined that she wasn’t a person, and therefore didn’t need even the minimum standard of care you would give to a human being: A bed, a warm room, food, a place to use the toilet. She was locked up in an outdoor dog run in Alberta in the winter.

The media reported on the vigil, but didn’t really provide hard statistical information about the abuse and murder of people with disabilities, beyond making vague references to the fact that we are more likely to experience abuse. Many of those articles were specifically framed to focus on caregivers, not actual people with disabilities. Caregivers to ‘speak for those who can’t,’ reminding us, yet again, that those of us who cannot communicate in a way that satisfies others are deemed ‘silent.’

When we talk about ableism, about social attitudes, this is what we are talking about. We are talking about the fact that Betty’s life was deemed worthless because of her disabilities, and that every mainstream narrative reinforced that, right down to the complete lack of interest in her death on the part of anyone other than a handful of disability rights activists.

I remember the Bettys of this world, because so few people will.