Category Archives: intersectionality

Veterans Find Self Expression and Therapy

Moderatrix’ Incredibly Verbose Note: The linked article in Stars & Stripes held a couple of problems for me. One: It gave an impression that pharmaceutical therapy is somehow not a reasonable treatment for people dealing with mental health or anxiety disorders. This should not be taken as the opinion of myself, nor any member of the FWD/Forward team. I believe that it shows how stigmatized that direction of therapy can be, and how mental health services can be socialized to make men feel “weak” for needing them. How a person chooses to treat their mental health or social anxiety disorders is between themselves and their health care provider. Comments judging this course of therapy will be deleted and the commenter possibly banned pending a review. I will not have someone coming to this board and seeing their choice of therapy, which is helping them, mocked or dismissed.

Two: The linked article says that bibliotherapy is “poetry therapy”, when nothing I have found is that specific. Anything that I have found online, as well as my background in Greek and Latin root words, says that bibliotherapy is any type of therapy using the written word as supplemental therapy. I found that statement by the S&S writer misleading. I am willing to be corrected, but I am more inclined to believe that it is a part of a broad spectrum of treatment options. I find it like saying that “pharmaceutical therapy” means keeping someone pumped full of morphine all the time (not that there is anything wrong with that if that is what you need to manage your specific needs).

Nonetheless, I found the article incredibly interesting, and am ecstatic to find that veterans are finding ways to get care in ways that make them comfortable. Enjoy.

Spc. Victoria Montenegro received an Army Commendation Medal, complete with a “V” for Valor for helping her other team mates when her vehicle exploded in Karbala, Iraq. That same accident also threw shrapnel into her forehead and right eye. It gave her a complex fracture and bone loss in her left hand.

It also left her with PTSD.

Spc. Matt Ping also came back from “The Sandbox”, his time spent in Northern Afghanistan, he found himself mixing flashback with childhood memories. For him, the thought of a pharmaceutical approach, the normal approach taken by the VA, was too unappealing.

For both of them, a different kind of therapy program has been incredibly beneficial.

The Walter Reed Medical Center in Washington, D.C. has a program, run by Roseanne Singer, that helps veterans deal with their PTSD through the written word, mostly poetry. Participants are welcome to come to an informal gathering that takes place in the lobby of the Mologne House. Participants are under no obligation to participate, they may come whenever they feel comfortable, talk as much or as little as they like, and share or not share what they have written. The program does not analyze or critique, but rather focuses on getting veterans who find it otherwise difficult to communicate their feelings to convey them through writing. Or, as Ping , also now a part of Lisa Rosenthal’s Vet Art Project in Chicago describes poetry therapy:

“Poetry helps me deal with coming back to a society that’s gone in a different direction,” Ping said. “Coming home is one of the strangest things I’ve ever encountered. The 16 months of isolation and being secluded and then coming back and trying to be the same person you were before you left. I don’t know if that’s possible.”

Ping also has a blog where he shares his poetry (I have only scanned the front page, and I make no guarantees about triggering language).

Montenegro’s poetry focuses on the pain of being a “young, short, wounded female in a world of men,”.

“A lot of times around the hospital, I’d be mistaken for somebody’s family member,” she said. “It bugged me.”

Overall, finds the self-paced program beneficial, and enjoys the control over her own healing the . There is no pressure to heal at an expected rate, no one telling her that she should be over it by now. If she doesn’t want to share something, she doesn’t have to.

You can read her poem “Perspectives” (which I thought was moving) at the S&S link, and if you have a flash player you can listen to her read it.

The more ways we find to help our returning troops the better. If they aren’t thriving in the traditional therapy programs (and I can understand why), or if they aren’t being given proper therapy in addition to their drug treatments (I can relate), then we need to find therapy programs that do help them. We owe it to them.

Does Outright Speculation Make This Disabled Feminist Angry?

Answer: Yes.

Let’s talk about this piece-of-crap article recently published on that oh-so-“liberal” news n’ culture site, Salon.com. I’m prefacing this post with a warning for ableist language and concepts on the part of the article’s author, Rahul K. Parikh, M.D. The article begins as follows:

There was a time when a celebrity’s sudden death almost invariably meant illegal drugs…[a]nd so it seems with Brittany Murphy, the bubbly and bright actress who died of cardiac arrest at 32.

Yes, it seems. Point is, we don’t know much yet. There are other health-related issues or conditions that can lead to cardiac arrest, but is this acknowledged? Of course not! Parikh continues:

The coroner’s notes allegedly claim a pharmacopia in Murphy’s bathroom cabinet: Topamax (for seizures or migraines), methylprednisolone (a steroid), fluoxetine (an antidepressant), Klonopin (for anxiety), carbamazepine (for seizures or bipolar disorder), Ativan (for anxiety), Vicoprofen (pain reliever), propranolol (for hypertension, migraines or anxiety), Biaxin (an antibiotic), and hydrocodone (a narcotic pain reliever). Gone are the days of shameful crack pipes and empty gin bottles.

OH MY GOD, EVERYBODY PANIC.

Murphy’s medications, like those of [Heath] Ledger and Anna Nicole Smith, are on the shelves of your local drugstore, available with a simple trip to the doctor — or doctors — whom you merely need to convince that you need the stuff. Did one doctor prescribe her those meds? Did 10? We don’t yet know. But as a doctor myself, I just kept wondering (and not for the first time): What if doctors were more like librarians? Would Brittany Murphy still be alive?

Cue scary music! THE DANGER IS ON THE SHELVES OF YOUR LOCAL DRUGSTORE. Nevermind that people with chronic pain conditions and disabilities have to jump through numerous, often ridiculous hoops just to get, say, a month’s supply of medications that help them function and/or live life to the fullest extent possible. As one of these people, I am of the opinion that Parikh is being rather disingenuous here; these drugs, at least for us “average” folk with chronic pain issues, are usually not easy to obtain.

After nattering about how the medical field should follow the example of public libraries when it comes to monitoring people and their books meds, he continues:

One of the many negative consequences of such fragmentation is how ridiculously easy it can be to get drugs. Most doctors know patients who have desperately angled to get a prescription they don’t need, usually highly addictive pain medicines like Percocet or OxyContin. This is what we call “doctor shopping,” hopping from one physician to the next until they find someone willing to write a script. When the supply dries up, they go to another doctor, and then another. One 53-year-old man in California visited 183 doctors and 47 pharmacies in one year to support his addiction to painkillers.

Hey, nice use of anecdata there! What on earth does one 53 year-old guy in California have to do with Brittany Murphy’s situation? As for “most doctors” knowing a patient who has “angled” for meds they “don’t need” (who makes that judgement, I wonder?): cry me a goddamn river. The endless Helen Lovejoy-gasping about ADDICTION!!1 in fact makes it incredibly hard for some of us who need these medications to obtain them, and no amount of 1984-esque War is Peace anecdata–from someone, no less, who is supposed to help people in pain as part of his chosen occupation–is going to change that.

In short, the experiences of people with chronic pain are going be different than those of an able-bodied doctor, but nowhere is this acknowledged in this article–nor is it mentioned in many larger conversations about  painkillers and (possible) ADDICTION!!11.

Most of us who need these medications do not have the energy to doctor-shop. I do not wish to deny that painkiller addiction is a serious problem; it is, for some. Sadly, these sorts of “conversations” on the specter of supposedly widespread PAINKILLER ADDICTION!!!1–much like those focusing on the OBESITY CRISIS!!11–tend to focus entirely too much attention on extreme cases and anecdata, leaving out those who need these medications for legitimate medical reasons, and, I might add, some of whom spend a great portion of time proving said legitimacy in order to show that they are not addicts or doctor-shoppers.

But if “preventing” ADDICTION!11 in able-bodied people via endless hand-wringing about who “really” needs these drugs versus who doesn’t is the number one priority here, that is a problem. Yet again, the needs of those who are judged by society as most “important” or productive or fitting into able-bodied society are taken seriously, and the needs of those who do not fit this mold–because they need painkillers for actual pain and are therefore bad/unproductive/just a bunch of whiners–are ignored, or worse, actively shamed and castigated for things or circumstances that they cannot control.

And, as OuyangDan pointed out so eloquently on this very blog, there are a lot of things that we don’t know about Brittany Murphy’s death. Using her death as a poorly-researched, almost totally speculative “example” of the dangers of painkiller ADDICTION!!11 is not only tasteless, but it distracts from how ridiculously the concerns about painkillers, “legitimacy” and the specter of addiction are often framed by (mostly privileged) people who do not deal with these things in their daily lives.

Less infuriating: Many of the commenters seem to agree that this article and its “speculation” went too far, which is unusual for Salon commenters, as most of them tend to exemplify the worst of privileged white “liberalism” on a regular basis (as you would expect, this includes loads of abled privilege and the anecdata to back up their uninformed opinions).

Subtitles in Assassin’s Creed II and Ubisoft’s Pledge

I am somewhat of a gamer. I am not by any means an avid gamer or someone you should call up with questions. If you want a review of how easy a game is to play or how not confusing your controls are, I am your girl*.

I am mostly a computer gamer. I like my World of Warcraft just fine, thank-you. It has a lot of room for critique, and I have some letter writing campaigns to Blizzard in progress. But I like it. I have no love for Warhammer Online, having never played it after being promised by multiple reliable sources that I would be able to play it on my Mac, and after purchasing the Special Edition in order to get into the Beta, was most unpleasantly surprised. Whatthefuckever, I turned that store credit into a Wii Fit, something I actually used. And, no, I don’t care that you can now get it for Mac, they already shat in my Cinnamon Life. I am digressing when I just wanted to say that I prefer computer over console because I tend to find console controls too confusing for me —  all the button combinations are too much to keep track of. I like to set up my buttons in a row and get my “Pew Pew Moar” on. If it is more complicated than original Nintendo’s Super Mario Bros., I don’t really enjoy it. I just don’t have the reaction times or memory to figure out all of those buttons (and I don’t need an evo psych lecture on how girls just don’t have those skills, because I have many gamer skills that translate well into the PvP aspects of WoW…I just don’t have it for console gaming).

One thing that endeared me to WoW, however, is that all the dialogue is subtitled. I am not deaf, but I do sometimes have trouble sorting dialogue out from ambient noise, both in game and out. I don’t want to have to miss something in an otherwise mostly enjoyable game because I can’t understand what the NPCs are saying. It doesn’t matter how high you turn the volume, you just can’t get everything. WoW even lets me know when someone is yelling.

Back to console games…

One console game that I did pick up was Ubisoft’s Assassin’s Creed. There was a lot of excitement over this game, it was anxiously awaited — one of the most anticipated games of the year of its release. There was also a huge deal surrounding one of its lead developers that I will leave you to read up on,I just am too tired to rehash it — I was thrilled that it didn’t stop Jade Raymond from being a part of ASII’s team (no transcript at the link). Just for a fun exercise, Google “Jade Raymond + Assassin’s Creed II” and see how many search results come up with anything that has to do with how good she is at being a video game developer or producer, and then tell me why more women don’t go into that industry. The team at Ubisoft put in the beginning of the game that it was developed by a team of multi-cultural and religiously sensitive people from many diverse backgrounds. I found the game fantastic. The Guy beat it in just a couple of days (he eats games for breakfast like that), even if the ending did make him want to put it in the freezer, and even though I have only recently tried it, I have really enjoyed it. To me, the controls are really simple, the game play is methodical (note: things that really piss some gamers off appeal to me, as in part of my OC nature really likes the repetitive storyline, and the different things to complete. I *love* that, because it allows me to zone out, clearing my mind.), and the game itself is Really Fucking Beautiful. I love going to all the checkpoints and using the “eagle vision”, just viewing the cities.

One aspect that was missing from this design team, it seems, was someone who had input on accessibility, because one complaint I had, even before I was invested in disability activism to the degree I am now, is that it had no subtitles. Like I said, I often miss dialogue during cut scenes, and even if that does not affect my game play, it affects my gaming experience.

When Assassin’s Creed II came out I read in The Guys Game Informer that they made a lot of changes based on what fans wrote to Ubisoft asking for. Before I was willing to get this for The Guy for X-mas this year, I needed to see two things: 1) That the playable character could not drown in a two fucking inches of water, and 2) subtitles. Well what do you know, this iteration’s assassin can fucking swim, and Assassin’s Creed II includes subtitles for all of the game play.

Rawk.

We have it, and it both translates the Italian and has decent subtitles, although it doesn’t describe non-spoken sounds.

There’s more.

Ubisoft, apparently has made a commitment that they will always include the considerations of deaf and hard-of-hearing gamers in the development phases of their gaming creation. This is exciting news for me, coming from a company that I have come to really like. By like, I mean, has made the first non-Nintendo based console game that I can actually play (this is also because I find the new black controller included w/ the X-Box Elite military appreciation smaller than the original, and fits comfortably in my hands, even on a moderate pain day).

I am looking forward to finishing Assassin’s Creed so that I can move on to ASII, if for no other reason than for the subtitles. I wish they had made this pledge long ago. It is worth noting that I read on a gamer message board somewhere (I can’t find it now) that someone had written them, and they responded, saying they took that complaint very seriously, and now, here they have. This has raised Ubisoft in my mind.

Like it was hard to do at this point.

*I do sometimes call myself girl. I don’t have a problem with this.

More articles on subtitles in video games: Subtitles: Increasing Game Accessibility, Comprehension (Gamasutra)

Guest Post: Disability and Aging

by Laurie Toby Edison and Debbie Notkin
Body Impolitic

Laurie: I blog with Debbie Notkin at “Body Impolitic” where we talk about body image issues in the broadest sense. I’m the mother of two daughters and I live in the Mission in San Francisco. I’ve published two books of my photographs: Women En Large: Images of Fat Nudes (edited and text by Debbie Notkin) and Familiar Men: A Book of Nudes (edited by Debbie Notkin, text by Debbie Notkin and Richard F. Dutcher).

Debbie: Along with my work with Laurie, I’ve has been an in-house and consulting editor of science fiction and fantasy at Tor Books. I help organize WisCon, the world’s first feminist science fiction convention,and I’m chair of the motherboard of the James Tiptree, Jr. Award, supporting science fiction and fantasy that explore and expand gender. My day job is as a contracts manager for a nonfiction publishing company.

We were very pleased to be invited to blog about the intersection between aging and disability, in part because we think it’s a smaller intersection than is generally perceived.

We are 67 and 58, respectively, and both of us are able-bodied, and active. Not because “70 is the new 50” but because our bodies work just fine.

The stereotypical intersection between aging and disability is the cultural expectation that they are the same thing. Whether people are saying “After 40, it’s patch, patch, patch” or just looking surprised if a woman over 50 lifts a 50-pound box, the common assumption is that age and disability are irretrievably linked, just as youth and ability are perceived to be irretrievably linked. While 75-year-old marathon runners and charmingly fragile disabled teenagers both show up as role models, old people who walk to the grocery store and people in their young 20s who are frequently unable to leave their homes because of chronic pain are equally invisible.

Living in our bodies is a day-by-day, minute-by-minute experience. In our experience, and the experience of our friends who are our ages or older, aging does entail additional maintenance time and energy. More small things about our bodies need attention than they did 25 years ago. We go to doctors more often. We have more routine tests. We have excellent memories, but we lose words more often than we used to.

These things, however, are not disabilities. Conflating age and disability is not only dishonest about the realities of aging, it is also disrespectful of the realities of disability. We can both go where we want to go, and get in to the buildings or transit vehicles when we get there. Neither of us is in the kind of pain (physical or mental) that keeps us from living able-bodied lives. To describe our minor aging issues as disabling would be to undercut and undervalue the real disabilities that people live with every day.

At the same time, the stigma of aging (which is partially fear of death and partially the culture’s definition that beauty must be youthful) puts a disturbing spin on diseases and conditions which are associated with aging. If someone over 60 has mild to moderate arthritis, almost everyone (including her) will view it as evidence of her body’s degeneration and eventual demise, while if someone under 40 has mild to moderate arthritis, it will be just something she has to live with, and not evidence that she’s falling apart. This distinction is so endemic in the culture that one of the major medical problems with aging is that people expect their aches and pains to be permanent, and thus don’t address them. One reason people disguise some of the things that happen to them as they age, just people who can sometimes disguise their disabilities, is that we are treated so differently in the world if we tell the truth about our bodies.

As fat activists, we’ve known for years that a fat person should always ask a doctor “What do you advise your thin patients with this condition?” Similarly, an older person should always ask a doctor, “What do you advise your young patients with this condition?”

Do disabled people experience the flip side of this stigma? Not being disabled ourselves, we can’t speak to that, but readers of this blog surely can. We’d like to know: Does being disabled sometimes get transformed into being treated as if you were aging? And if so, how does that work?

***

It comes down to rejecting stereotypes: the two stereotypes of aging are the ever-increasing decrepitude and incapacity on the one hand and the cheerful, active grandparents in the Depends commercials on the other hand. Like stereotypes of disability, or of women, or of people of color, these are not true. The truth is much more layered, complicated, and different for every individual.

No, Actually, “Eat a Sandwich” is Not “Feminist Activism”…

…and I’m going to tell you why.

Because the policing of women’s bodies, whether you are being cheeky, or saying it to a plastic doll, is not cool. It’s hurtful and not useful, and has no place in feminist discourse. Can we move past that point? Huh? That’s a pretty Kindy thing, IMNSFHO.

‘Kay.

Moving on.

*The rest of this post is going to use some harsh language that describes my experiences/anger/frustration with Anorexia and Bulimia. I am direct and vulgar and sometimes a little flippant with how I describe my past behavior, and that is how I survived it. This may be triggering to some people. I also swear. A lot.*

There is a point when you are struggling* with an eating disorder that you might find yourself thin. Perhaps painfully thin. Maybe dangerously thin. You know this. You are aware. You haven’t avoided solids for this long, or barfed up all of that dinner you were pretending to enjoy without realizing what this means to your body. You might have some misunderstandings about what your body is actually needing…but you pretty much know.

In fact, everyone knows. All anyone can fucking talk about is how good you look now that you are so skinny…but wait…you just passed so good and have moved into too skinny…(because there is never good enough…too fat or too thin you will never be in)

Seriously, girl, eat a damned burger.

Or a bacon sandwich.

Eat something.

Because, you know, it’s that easy.

In fact (shifting voices), the only thing that anyone said to me that wasn’t so fucking insulting that I didn’t want to scream was “I am not going to insult you by saying how much harm you are doing to yourself because you are a smart girl and I know you know, when you are ready, I’ll be here”.

I watched all the shockudrama’s that were meant to scare me because ZOMG my STOMACH could RUPTURE and I was DOING THIS to MYSELF!

*for shame*

I saw Tracy Gold and the mom from Family Ties and countless others on the after school specials during school and I fucking knew.

How could I not? I knew what the result was…that was the damned point.

And I knew I was sick.

I. Didn’t. Care.

And that was scarier than anything…that I felt helpless inside my own body to stop it.

Eat a fucking sandwich.

As if I wouldn’t just throw it back up.

As if that bottle of ipecac wasn’t in my glove box.

As if I wasn’t really good at tearing it into pieces to make you think I was actually eating it only to drop some and crumble some and throw the rest away…

No, I wasn’t embarrassed of letting you hear me pee…the water running was a cover for something else…

Eat a fucking sandwich.

Tumbling around inside my head…as if it never occurred to me to do.

As if I had the power to just eat that fucking sandwich.

The hurt and the denial and the lies…and shit yelling at me just didn’t help…

Because who the fuck carries sugar packets in their purse?

And do you know when that shit started?

When I was a teenager.

We shouldn’t infantilize teenagers by saying “b-b-but they don’t get that this message isn’t aimed at real people”.

Bullshit.

Teenagers are people…with feelings…

And if anyone can tell you about what it feels like to hurt because you sit outside the socially accepted norm of appearance, it is another teenager…

being told to just eat a sandwich isn’t that funny if you are dealing with body issues

and burning yourself with a curling iron because you don’t know what else to do…

Eat. A. Damn. Sandwich.

It’s not funny or witty or clever or great new empowering activism.

It’s awful.

It’s hurtful.

It’s waking up in your own bile.

And it is possibly terrifying the hell out of someone.

Unpack that one.

*I don’t like to use “struggle” any longer when discussing disability. My experience with EDs was a struggle. There is no other word in my vocabulary, which spans a few languages, to explain it. I struggled, fought, and am still not sure I have won this one.

Disability 101: What is Able-Bodied or Abled Privilege?

What is able-bodied or abled privilege?

The term able-bodied/abled privilege refers to the numerous benefits—-some hidden, many not—-that many societies and cultures accord to able-bodied and/or abled people. Despite many folks’ paying lip service to notions of equality for PWDs, the chronically ill, people with psychiatric conditions, and those with chronic health conditions, abled privilege still exists, and there are still a lot of people who are resistant to the idea of a truly equitable, accessible society. Able-bodied and abled privilege is often hard for non-disabled people to spot; yet, in the words of the famous Palmolive dish soap ad, [YouTube link] most of us are “soaking in it.”

Many cultures have social expectations, structures, cultural mores, and institutions that are set up to accommodate able-bodied and/or abled people with the most ease; this is, of course, problematic for those who do not fit the standard of “able-bodied,” or “fully able,” whether in whole or part. Able-bodied or abled privilege also encompasses things like not having to worry about one’s energy level and/or pain level on any given day, the possible negative reactions of others to one’s needs due to his/her/zie’s disability or chronic condition, being stared at or questioned about (with varying degrees of invasiveness) his/her/zie’s disability or condition by strangers, her/his/zie’s ability to move for long distances or on a variety of surfaces without inconvenience/discomfort/pain and at a pace considered “appropriate” by others, being able to make decisions about the course of one’s medical, psychiatric, or other type of treatment without being questioned by others as to whether he/she/zie is making “the right choice” or can make a “rational” decision about his/her/zie’s own treatment-related choices, or being ignored by able-bodied people when one needs assistance in public; these kinds of able privilege masquerade as “the norm” for those without disabilities. For more examples, see Rio’s update on Peggy McIntosh’s famous article “White Privilege: Unpacking the Invisible Knapsack” [link goes to Amptoons].

An earlier version of this post was originally posted at Faces of Fibro on May 6, 2009.

Jordan’s Principle

This post was originally published in July 2009 as part of International Blog Against Racism Week

One of the things that we talk about here, on occasion, is how lucky we are that Don is a white man with a disability living in Canada. Things become more complicated in my post-racial utopia of a country when someone of a different race is born with a disability.

Take, for example, the case of Jordan River Anderson, a First Nations boy from Norway House Cree Nation in Manitoba. Jordan was born with “complex health needs” (this is code for Carey Fineman Ziter Syndrome, a rare muscular disorder) and spent the first two years of his life in hospital. At that point, his doctors agreed that he could go home and live with his family, although he would need continuing care.

If Jordan hadn’t been First Nations, he would have gone home, and his care would have been paid for by the provincial government as part of his health care costs. However, as a First Nations child, the cost of Jordan’s care became an argument between the provincial and federal government. Neither wanted to pay for it, so Jordan stayed in hospital.

He died at age 5, having never been home.

First Nations advocates came together and wrote Jordan’s Principle:

Under this principle, where a jurisdictional dispute arises between two government parties (provincial/territorial or federal) or between two departments or ministries of the same government, regarding payment for services for a Status Indian child which are otherwise available to other Canadian children, the government or ministry/department of first contact must pay for the services without delay or disruption. The paying government party can then refer the matter to jurisdictional dispute mechanisms. In this way, the needs of the child get met first while still allowing for the jurisdictional dispute to be resolved.

This was adopted unanimously by the Canadian Government in December, 2007.

In principle.

Special Needs Kids May Be Forced Into Foster Care (May, 2008):

Government infighting has families in a northern Manitoba community in anguish about how to best care for their children.

The Norway House Cree Nation has told the families of children with special needs that they may be forced to give up their children because the First Nation can no longer pay for their care, and federal and provincial governments can’t agree on who should pay.

Charlene Ducharme works with the Kinosao Sipi Minisowin Agency, a social agency on the reserve, and said she has yet to see Jordan’s Principle in action. She said the children of Norway House deserve the same care that other Manitoba children get.

“Our premier said Manitoba would be the first one to implement Jordan’s Principle… we’re still waiting.”

Late in 2008, the Manitoba Government also adopted Jordan’s Principle.

However, in reality, very little has changed. According to a UNICEF report issued this year, in honour of the 20th Anniversary of the Convention of the Rights of the Child, First Nations, Metis, and Inuit children in Canada still suffer in comparison to other children:

1 in 4 First Nations children lives in poverty compared to 1 in 9 Canadian children on average.

In cities of more than 100,000 people, approximately 50 per cent of Aboriginal children under the age of 15 live in low-income housing, compared to 21 per cent of non-Aboriginal children.

In contrast to the national infant mortality rate of 5 infant deaths per 1,000 live births, the rate is 8 per 1, 000 among First Nations and 16 per 1,000 in Nunavut (where 85 per cent of the population is Inuit).

Only 63 per cent of First Nations children on selected reserves accessed a doctor in 2001; 46 per cent of Inuit children and 77 per cent Métis children did so, compared to 85 per cent of Canadian children on average.

Between 33 and 45 per cent of Inuit, Métis and First Nations children (on and off reserve) report chronic illness.

On-reserve First Nations child immunization rates are 20 per cent lower than in the general population, leading to higher rates of vaccine-preventable diseases.

38: The percentage of deaths attributable to suicide for First Nations youth aged 10 to 19. In 1999, the suicide rate among First Nations was 2.1 times higher than the overall Canadian rate. The rate of suicide for Inuit is 11 times higher than the overall rate of the Canadian population.

[Source] [Report Summary, WARNING: PDF]

Canada’s ranking on the Human Development Index, which is used by the United Nations to measure a country’s achievement in health, knowledge, and a decent standard of living is third. Evaluating the living conditions of First Nations, Inuit, and Metis people alone, their ranking is 68th.

My country prides itself on being “better” than the U.S. on issues of race.

Jordan died 800 km from home because he was First Nations. First Nations children in my country are not getting the care they need, the care available to other children, because they are First Nations.

This is not an improvement.

[International Blog Against Racism Week]

Your Chilling Fact For The Day

Originally published July 2009

The PALS also indicates that Canadian women, 15 year of age and older, experience a higher prevalence of disability at 15.2 percent, than Canadian men at 13.4 percent. In 2006, 19.5 percent of Ontario adult women reported having a disability compared with 16.6 percent of men (Statistics Canada, 2006). Women with disabilities are significantly more likely to experience abuse than non-disabled women. It is estimated that women with disabilities are 1.5 to 10 times more likely to experience violence than non-disabled women, depending on whether they are living in the community or an institution (Public Health Agency of Canada, online).

[From: We Are Visible: Ten Years Later WARNING: PDF]

So.

How many emergency shelters are you aware of that are fully accessible, have a ‘terp available in some way for Deaf women, or provide their information in Braille? Have grip bars in the bathrooms? Have accessible toilets?

How many have funding for all of this?

The last women’s shelter I volunteered in had a disabled-parking zone in front, but that’s all I recall. What about you?

Guest Post: Sex and Scoliosis

This is a Guest Post by Atlasien. It was originally published here.

I’m a multiracial Asian-American woman, Southerner, third-culture kid and mommyblogger. I’ve been living in the Atlanta area for more than a decade now. I mainly blog about race and foster care adoption. My husband and I have a 7-year-old son that we adopted as an older child. I enjoy this blog, and I’ve learned a lot of important stuff about disability issues by reading here.

What does scoliosis have to do with sex?

There are a lot of connections. I guess I’ll need to start by explaining scoliosis. It’s a common disorder, but one that is often very misunderstood by the general public, as well as many non-orthopedic doctors. Most people vaguely remember a scoliosis check from their school days. Sometimes the kids are lined up in a row, and told to take off their shirts and bend over while a medical professional inspects them from the back. The experience is obviously rather humiliating and tends to cause a lot of nervous laughter.

Scoliosis — a sideways, left-right asymmetry of the spine — is the most common form of spinal deformity. It can also be accompanied by other forms of spinal deformity, like kyphosis (AKA hunchback) and extreme lordosis (AKA swayback). It sometimes comes as a package deal along with disorders of connective tissue, or with cerebral palsy and spinal bifida. In those cases, scoliosis is often diagnosed at a very early age.

The other kind of scoliosis, the much more common kind, seems to come out of nowhere. It’s known as adolescent idiopathic scoliosis or AIS. “Idiopathic” is from the same Greek root as “idiot” and basically means “we have no idea what causes it.” Though recent research has shown that it’s actually genetic, and they’ve even tracked down the genetic location (but only if you’re white, which is bizarre, because there isn’t any significant racial/ethnic difference in prevalence rate). Someone with this kind of scoliosis (usually a girl, as the incidence of more serious curves among women is 7-10 times that of men) is born with a normal-looking spine. Before puberty, the spine begins to bend and curve. Maybe it stays there… maybe it gets worse through puberty. Then maybe it stays there, or maybe it gets a lot worse close to menopause. Without major surgery, it’s essentially a one way road. In scoliosis vocabulary, when curves get worse, it’s called “progression”. “Progression” is bad. Arresting progression is good.

According to this NIH resource, “Of every 1,000 children, 3 to 5 develop spinal curves that are considered large enough to need treatment.” If you adjust for sex, the rate climbs up to almost 1% of all girls. I don’t know of any source that says actually how many girls receive treatment of which types. Treatment means to watch, take lots of x-rays, determine progression, and if it looks like progression is, well, progressing, to brace. Or in very serious cases, go directly to spinal fusion.

A pre-teen girl, front and back view, with her face obscured.  She has a metal brace that has one rod running up the front to a metal collar, and two rods in the back.  There is a fiberglass girdle across the abdomen and down to the hips.  There is a strap hooking to both sides of the metal rod in the front.  Descriptive text provided by Don.

That’s the “Milwaukee” variant of brace. It’s the kind I had. It’s made from hard plastic and steel. It’s expensive, ugly, frightening, and extremely uncomfortable. The family nickname for my brace was “The Iron Maiden”. You can climb into it and strap it on and off, and adjustments of the screws will accommodate changing body shape during puberty. I think you’re supposed to wear it until a few years past puberty, when your spine growth finally halts. The brace is an old form of treatment and it’s shown to be moderately effective at arresting progression.

Three images of the back of a young woman.  In each, there is an obvious curvature of her spine.  It's an S-style curve.  The middle portion of her back, around the shoulder blades, is off-set to the right, while the shoulders and hips line up relatively evenly.  Descriptive text by Don.

Many girls experience horror and anger when they find out what bracing is going to mean for their lives, and that it won’t even fix them, it will just probably keep them from getting any worse.

It was easier for me to accept my fate. First of all, my mother also has idiopathic scoliosis, and her curve was fairly serious. Hers is comparable to the woman pictured above. She had not been treated as a girl, and her scoliosis had slowly progressed as she went into middle age. She eventually had a spinal fusion — two long steel rods screwed into her spine — and was in the hospital for two weeks. So I had a strong motivation to make sure my curve didn’t progress as far as my mother’s. She was also a positive role model for me. I saw her as an active, glamorous woman who refused to be limited by scoliosis. I tried to adopt the same stoic attitude toward my own scoliosis. Second of all, my orthopedist said it was OK to only wear my brace 12 hours a day, which meant I slept in it, but I didn’t have to wear it to school. I think he may have subscribed to the philosophy that although the brace should really be worn 23 hours a day, there’s so much social stigma attached to it that many girls rebel, and won’t wear it at all, whereas a private bracing regimen has more likelihood of consistent follow-through.

I don’t know if it would have made school any worse. I’ve written before about the extensive racist abuse, and sexualized racist abuse, I got in late elementary and middle school.

I was harassed so much in the locker room my first year of middle school that I refused to change my clothes at all. P.E. was a living nightmare full of verbal attacks and physical threats from larger girls. I spent much of my time desperately thinking of ways I could get a medical excuse. Unfortunately, aside from my scoliosis, I was healthy as a horse. I refused to participate in activities anyway, and sat with the asthma-sidelined section. I’m still bitter about this experience because it taught me to associate healthy athleticism with emotional trauma and racist bullying. Maybe if I’d had my brace on, I could have gotten my coveted medical excuse.

It was something I never, ever thought of at the time, though. The orthopedist’s word was the word of law. And the brace was something to be hidden. I think this is a common tendency among brace-wearers. Girls that age don’t want to be seen in a brace. For photos, they’ll take off the brace. If they’re told to wear it to school, they’re mocked and stared at. At the time, I considered myself very lucky that I was able to hide my brace from other kids my age.

I don’t know much about disability theory and disablism, but I’ve been reading through blogs about it, and it’s very interesting in relation to scoliosis. I don’t identify as a disabled person/person with disabilities, and I don’t think many other people with idiopathic scoliosis do. But many of us have also gone through an intensely emotional adolescent period where we’re viewed as disabled.

One of the hallmarks of disablism is that it strips away sexuality. The prejudice against disabled people includes thinking they are not supposed to exist sexually, have sexual desire or be desired.

Being braced means going through puberty strapped and screwed in to a weird exoskeleton that incarnates the negation and emprisonment of your sexuality. Your breasts and hips are starting to grow. They might start to bump painfully against the brace. So you have to visit the doctor — often an older man — who adjusts your screws to accommodate your new growth.

The brace seems anti-sexual, but it also has positive sexual connotations. The light at the end of the dark tunnel is that the brace will “keep you normal”. You’ll get through puberty and enter into sexually desirable womanhood without too much spinal deformity… the brace will preserve you. The brace probably becomes the most significant physical object in your life, for good and for evil.

I certainly didn’t receive any counseling about my scoliosis. I don’t know if it’s common today to have counseling as part of the bracing process. If it’s not, it should be. Girls who have gone through bracing feel like it’s them, alone, against the world. Although it’s quite a common experience, by medical and social tradition, the disorder is isolated and hidden.

This study showed that bracing doesn’t affect self-image much. However, it also takes places in Sweden, where school environment I’m sure is quite different than in the U.S. This other U.S. study tells a somewhat different story: “Scoliosis was an independent risk factor for suicidal thought, worry and concern over body development, and peer interactions after adjustment. CONCLUSION: Scoliosis is a significant risk factor for psychosocial issues and health-compromising behavior. Gender differences exist in male and female adolescents with scoliosis.”

After bracing, scoliosis, and deformities of the spine in general, become almost invisible. It’s extremely rare to have a spinal deformity so pronounced that anyone can tell by looking at you when you have clothes on. People with idiopathic scoliosis “pass”. People have known me for years, even decades, without knowing I had scoliosis. Then one day they’ll see me in a bathing suit — and not even the first time they saw me in a bathing suit, but maybe the first time they really focused on my back — and they’ll burst out with something like, “OH MY GOD DID YOU KNOW SOMETHING IS REALLY WRONG WITH YOUR SPINE!!

Once it stops being invisible, it’s all of a sudden very, very visible. I guess it’s sort of like shaking hands with someone and suddenly realizing they have six fingers.

If I’m not experiencing any back pain, I rarely think about my scoliosis, although I sometimes worry about my future. Pregnancy is not a risk factor for progression, but menopause is. Right now, my thoracic curve is 36 degrees. If it gets past 40, I might need spinal fusion surgery. This is a mostly safe procedure, but it’s still really scary, and involves weeks in the hospital. Click on the following link if you’ve seen enough David Cronenberg movies that you think you can handle it (link to nightmarish spinal fusion surgery image). Spinal fusion partially reverses the curve, arrests or slows down further progression and relieves chronic pain. You’re still reasonably flexible afterwards, but there are potential complications, and I’m not considering surgery at this stage. If I refused surgery, and my curve happened to progress further, I would start to have more pain and diminished lung capacity. Past 60 degrees, I might start to experience severe and constant pain in my back and/or ribs, and my internal organs would get squeezed together and I might start to have breathing problems. Past 80 degrees I might have lung AND heart problems.

But I don’t stay up night worrying about the risks of progression. Many people have more uncertainty about their medical future than I do. For example, if I had diabetes, I might worry about having a foot amputation.

Since I grew up with scoliosis, it’s taken me a while to understand how it looks from the outside. Aesthetically speaking: not good. We’re conditioned to associate left-right symmetry with health and general well-being. People with moderate scoliosis, like me, often look symmetrical from the front, but asymmetrical from the back, and I suppose that seems eerie and perhaps even deceptive and sneaky. There’s a lot of really negative associations in popular culture (e.g. Hunchback of Notre Dame). When mean-spirited people do “retard” imitations they’ll often hunch up one shoulder and stagger in order to simulate a deformed spine.

I don’t talk about scoliosis casually because a) I don’t have any major health problems because of it, so there’s not that much to talk about b) I’m afraid of it being used against me. I’ll put it on medical history forms when I know I can be assured of privacy. It was used against me recently when I applied for private disability insurance. I thought it would be a good idea to have a separate private policy in case I lost my job for any reason. I did a ton of research, spent a lot of time talking with the salesman, and ended up with a quote that specifically excluded anything going wrong with my reproductive system AND my back. I changed my mind and decided it wasn’t worth buying since so much of my body was apparently un-insurable. They excluded my ENTIRE BACK. Hypothetically speaking, if I got in a minor car accident, and as a result developed the exact same kind of back problems that anyone without scoliosis would develop, nothing would be covered. What a terrible deal. No thanks!

The health implications of my scoliosis are not that extreme, and I don’t need any accommodations to perform any major life activities, which is why I don’t consider myself disabled.

– I have foot pain in my arch if I don’t wear comfortable shoes. I can wear platforms, but I can’t wear high heels.
– I have to be a bit careful doing things like yoga and pilates.
– I have to stay reasonably active in order to be 100% pain-free. When I get too sedentary, I start having back pain and rib pain. If I ever had an illness that forced me to rest all the time, I’d be in big trouble. Exercise and stretching are highly effective for scoliosis back pain. Other options I would consider to control pain if it ever got worse include drugs, physical therapy and adult braces. There are a gazillion alternative health “cures” for scoliosis back pain suffering, but they strike me as being of very dubious efficacy.
– I have to watch my posture
– I have to watch my weight. Excess weight leads to back pain. Being underweight might be even worse, because being underweight is connected to bone density loss, and people with scoliosis have lower than average bone density anyway.

None of these problems are really unique to scoliosis. Plenty of able-bodied and disabled people have back pain or foot pain.

This link from Eurospine.org sums it up: “Progression of scoliosis can involve an aesthetic problem and lead to functional problems. Respiratory disorders may develop in large curves greater than 80 [degrees]. Nonetheless, the mortality rates and vital prognosis in individuals with scoliosis are comparable to those of the general population.”

It’s the “aesthetic problem” of scoliosis that’s unique. Like I mentioned before, left-right symmetry is wound up with definitions of health and beauty across many different cultures. People like me are aware of this on a subconscious or barely conscious level. 99.99% of the time I forget that I don’t fit that symmetrical standard. Every so often I’m reminded, and it feels a bit painful. There are subtle psychological effects. Vague feelings of being a secret curved impostor in a straight-backed world. Times when I feel like my spine is an enemy working against me… times when it hurts to breathe and the pain makes me feel angry at my spreading rib bones, and I wish I could reach inside of myself and squeeze them back into place. Sometimes I’m bitter about the inches of height I lost to scoliosis.

Back to sex. Even without bracing, there’s still a sexual paradox when it comes to scoliosis. Have you ever seen a picture of a woman with scoliosis and/or kyphosis that was not anonymous, depersonalized, clinical, grim and depressing? Like the photos I included above? Scoliosis is profoundly unsexy.

On the other hand, when women pose provocatively, they often throw one hip to the side and put one shoulder forward.Why is that pose sexy? Maybe it makes us look femininely defenseless and vulnerable, as opposed to a masculine, stick straight pose. That’s going along with a typical sexist definition of “femininity”. There’s another less sexist possibility… the pose is also highlighting the flexibility of the spine. So in that sense, the woman is showing off her body’s capacity by bending in a certain way.

There’s a comic book artist, Rob Liefeld, who was (in)famous starting in the 1980s for drawing unrealistic women. The conventions of drawing women are in comics are easy to criticize, but Liefeld’s stuff is… well…I guess you’d have to see the spinal curvature to believe it.

Iconic Rob Leifeld drawing of a super heroine.  She's posing facing right, turning her head over her shoulder.  She has an impossibly-narrow abdomen, and spine curvature similar to severe lordosis, an inner curve of the spine.  She is not wearing very much clothing.  Description by Don.

That’s supposed to be sexy. For the audience of predominantly young men who made Liefeld very popular, it must have been sexy. This is a funny analysis of the above drawing by a group of women comic book artists:

Take note of Avengelyne’s waist and how it is thinner than her head. Minus the hair. Note how it hangs beneath her ribcage like a suspension bridge, rather than actually supporting the top of her body. (Her torso must be kept afloat by those helium breasts.) Note the scoliosis gone grossly untreated. Note the little leather bags which wouldn’t fit around a normal person’s wrist. Especially note that the artist put her in the most obvious POSE to exaggerate the spine: a profile shot with negative space between her back and arm. That’s correct – our intrepid heroine’s spine would appear yanked. Avengelyne is a SWAYback™.

The humor is partly at my expense. But I can’t help laughing. It’s a highly sexualized image, but not one that I identify with in any way.

But here’s a poster image I ran across that uses stupid sexist humor to make fun of a real woman, and I don’t find it funny at all.

A woman is facing straight on the camera, with her weight obviously all on one side.  She's curved her body to look like an S.  Text reads: Scoliosis: Making an otherwise beautiful girl look pitiful.  Image is from Motivated Photos.com, description by Anna

It really illuminates the double standard that women are subjected to. You’re supposed to be sexy so that you please men. But if it looks like you’re trying TOO hard, men (and other women) will make fun of you. If you don’t wear makeup, you’re a [insert homophobic slur]. Wear too much makeup, you’re a [insert transgender-phobic slur]. Curve your back, look sexy. Curve it too much, it looks like you’re deformed. Argh!

Thanks to my brief readings of disability theory, I realize that making fun of people with spinal deformities isn’t something I should just accept as the natural order of things, especially because this humor is connected to moral judgments of disability. That is, the idea that physical body difference reflects some kind of moral failing. When it comes to scoliosis, I think the general public halfway believes that scoliosis is the fault of the person’s family. There’s a myth that giving young kids backpacks that are too heavy will make their spines curve (totally not true). When people are adults, “she should have had that corrected” is sometimes an assumption. A lot of people don’t realize that the only sure way to even partly reverse a curve is spinal fusion, which also leaves a giant seam-scar running up your back. Another judgment is that a person with scoliosis must be poor. It’s true that I’m very lucky I had access to bracing; if I wasn’t born into a middle-class family in a rich country, my curve would be a lot worse by now. So there are major class differences in scoliosis, but ultimately, we’re all in different positions on the same boat because there is no way to permanently and completely reverse adult scoliosis.

Thanks to flickr, I did actually find some images of scoliosis that I think are beautiful and help affirm positive self-image and sexuality. I wish I’d found a greater variety of body types, but these images are great to start off with. Some are post spinal fusion.

First, here’s the typical clinical picture. It shows everything that’s wrong with the body.

A woman is facing away from the camera, with arrows pointing to various parts of body to describe them.  Head not centered over body.  One shoulder (right) higher.  One shoulder blade (right) higher and possibly more prominent.  Spine obviously curved (to the left).  One hip (left) more prominent.  Unequal gaps between the (left) arm and the trunk.  Description by Anna

Now here are the flickr pictures. They show the open possibility and vitality of a body with scoliosis.

Man with scoliosis facing away from the camera.  Someone has drawn his spine on his back with make up.
black and white photo of a woman facing away from the camera, wearing only a towel or blanket.  Her spine is curved, and her scars are visible.

man facing away from camera.  The photo is in a mirror.  One can see both his scoliosis scars from surgery and his elaborate arm tattoo.

woman facing away from the camera.  She is caught in the middle of dropping an apple behind her back, both arms curved behind her.

woman facing away from the camera.  The image is otherwise in black and white, except for her vivid red hair and lips.  She is wearing a black dress with part of the back cut out.  It clearly shows the curve of her spine.

photo is in black and white of a woman's lower torso, with a pronounced rib-cage and a pierced belly button

woman facing straight on the camera.  She is wearing both a brace, as described above, and a purple corset.

woman facing left from camera, with back facing camera.  She's wearing an back brace, and balancing on a small ball.

It’s heartening to see a bunch of pictures like that. There are more photos at this link.

When I walk, my right hip swivels a bit higher and wider than my left hip. I’ve had people tell me it looks sexy. I’ve had people ask if I’ve hurt my foot. Neither reaction bothers me anymore. The way I walk is just the way I walk. It gets me where I need to go.

Acknowledgements for this post: thanks to Thorn for commenting about this issue, and mentioning how it negatively affected your adoption homestudy due to ignorance on the part of the social worker. Also thanks to Deesha Philyaw on Twitter for mentioning the Judy Blume book about a girl who goes through bracing: Deenie. I wish I’d gotten a chance to read that book when I was a girl, and it sounds really interesting.

Getting Through College with a Mental Disability

We’ve been talking a lot about how university faculty and staff individually respond to students with disabilities, as well as attitudes from universities as a whole towards identifying students with potential mental health problems. I’ve noticed a lot of stories in the comments on those posts about the struggles individual readers had when navigating the university system, so wanted to share my own story and my perspectives about what made it possible for me to get through and graduate from university despite the onset of my bipolar during my freshman year. I can tell you in two words what made the difference for me: class privilege. I believe that without the money and other associated trappings of upper-middle class status I got from my parents, I would not have finished school and likely would have become homeless and unable to access meaningful mental health care. Which in turn would have certainly resulted in my death by suicide. I think it’s important to look at how and why class made such a significant difference in my experience those years, to identify policies and mechanisms that need to be adapted so that all students, regardless of class status, have the opportunity to finish their educations.

Although I had experienced some relatively mild depression during my senior year of high school, it wasn’t until my freshman year of college that I started to experience significant symptoms. I had moved thousands of miles from home to go to school in a city where I had no friends or family. The only person I knew on campus was my high school boyfriend, who I was still dating at the time. Things started going downhill for me:  I started staying in bed more often, sometimes for entire days, I stopped going to class,  but most often, I thought of death. I had an almost endless range of plans and procedures that I didn’t carry out because all of them seemed to require too much effort. I discovered self-harm, which I thought I’d invented. And I was terrified at how easy it seemed to be to get potential weapons, to cause myself harm.

At that point, I went to the student counseling center. When the day of my appointment finally came, the woman, a master’s student, took out a set of Native American tarot cards. I still remember how shocked I was.  I got up and left, demanded a new counselor, and came back a few weeks later for my return appointment – again with a master’s student, who wanted only to talk about my parents. I have some pretty obvious sources of psychological trauma – past sexual assault, then-current psychological abuse from my boyfriend – and my parents are not one of them. At least that student could hear how seriously dangerous my current depression was and gave me some samples of anti-depressants to take. Those pills triggered my undiagnosed mania and sent me into a two-day spin of increasing self-harm and lying to people in the dorm to get ahold of knives or razors or anything with a blade, culminating in a psychotic break when I tried to jump out the 3rd story window of my friend’s dorm room because I knew I could fly and wanted to test it out.

That landed me in the psych unit of the nearby community hospital. The hospitalization g0t my meds straight and got me on a mood stabilizer and got me set up with some tranquilizers for breakthrough hypomania or anxiety, so I was much more stable than I had been on the meds prescribed to me by the university health center. But a week after I was released, my roommate and best friend was hospitalized after a suicide attempt and sitting in the waiting room with her to be admitted triggered me badly enough that a few days later I self-admitted because I was scared of doing myself serious self-harm. And that’s when things went seriously sour with the university.

The university did not want me to return to the dorms after leaving the hospital, ostensibly because my behavior might frighten, upset, or otherwise disturb other dorm residents. The RA had also reported scabs on my arms (from self-harm) as suspected heroin use, so I had to disclose my self-harm to dispell that. (Although I’m not sure which would have been preferable from the university’s standpoint). If I’d been expelled from the dorm system at that point, I would have had to drop out of school as there was absolutely no way I was able to maintain an independent residence. Alternately, I could have couch-surfed.

So my parents threatened to sue the university for discrimination on the basis of mental disability. This required a whole lot of privilege – comfort with the judicial system, awareness of civil rights protections, financial ability to hire an attorney, willingness to disagree with the authority of the university. And although they hired an attorney and paid a fat retainer, the university caved before they actually had to file a suit. They agreed that I could return to the dorm system, but moved me to a new dorm across campus where I knew nobody and my roommate had had a double room to herself and greatly resented my arrival.

After I returned to school, my parents chose to pay for my ongoing mental health care out of pocket so I didn’t have to rely on the student counseling service for treatment. They paid for a private psychiatrist and a therapist who I saw twice a week – at what must have been astronomical cost to them. I know they are still involved in some collections disputes with the hospital, some 15 years after my hospitalization.

That’s a lot of personal story, but I think there are some really important points to examine. First, at no time during any of this was I ever in academic trouble nor did I need or request any academic accommodations (part of my problem was defining myself as someone who did well in school so I didn’t allow myself to waver academically, including being released from the hospital in the morning and taking a final that afternoon). Discussions about accommodating students often (reasonably) focus on academic accommodations, and I think there’s an assumption that any student having significant problems would be identified through the academic context before they needed housing or other accommodations. I am still not aware of how or if the office of students with disabilities would handle this kind of issue or whether they advocate on the student’s behalf. But accommodations in dorm life are just as crucial for students with disabilities as academic accommodations, especially when they live on campus and have no other real alternatives.

I often the housing concerns framed as a concern for other students – being around someone with a significant mental illness might traumatize them. And I agree that finding me dead in a bathroom would have traumatized someone. But my self-harm and my mania did not seem to me to be any more potentially traumatizing for other students than my dormmates who would go to the communal bathroom to throw up after every meal, those who were using hard drugs like cocaine, or even those who would binge drink until passing out naked on the stairway, none of whom ever suffered any potential housing consequences. To say nothing of my then-boyfriend, who was then causing me active and ongoing psychological trauma through his emotional abuse and who got to stay in the dorm with all our mutual friends after I was shipped across campus. That I was the only student looked at by the university and potentially subject to penalties – and identified as potentially problematic because I sought lifesaving and appropriate care – speaks volumes about how students with mental disabilities are seen by administrators.

My second point of contention is the degree to which the university actively contributed to my mental health problems before penalizing me for them. The manic episode which triggered my initial hospitalization was a direct result of the anti-depressants they prescribed for me. And I wouldn’t have been such a disaster and in need of immediate and emergency medication if my treatment hadn’t been delayed by over a month because of the first unhelpful counselor. Despite this, their only proposed solution was to get rid of me entirely – which seems to provide a disincentive for the school to provide effective counseling services. If the school pushes students into crisis, it can then remove them from school and campus. So why try to effectively treat someone?

The final point is the one I started with – it was solely due to my class privilege and the unwavering support of my privileged parents that I was able to fight the university to remain in the dorms and finish school. It was also due to them that I could access meaningful mental health care and treatment that allowed me to keep going in school. And it is stupid as hell that my luck in being born into such privilege was the determining factor in whether I moved forward or dropped out. Unfortunately, until the overall approach of universities towards dealing with students like me is drastically overhauled – to see us not as a threat to other students but a valuable part of the student community, to support us rather than trying to eliminate us out of fear – privilege is going to continue to be one of the most relevant factors.

I’m still thinking about how to best move forward on these issues. I have not done a great job of following up with my own university, primarily because I never want to speak to or be involved with them in any way ever again. But it seems like these issues must affect a sizable number of college students and contribute to the systemic problems that make it more difficult for people with mental disabilities to obtain higher education. I remember my time in college as a terrifying and desperate effort not to get kicked out – surely we can do better for the next generation of students.