Category Archives: activism

Getting Through College with a Mental Disability

accessibility, activism, class issues, intersectionality, justice, mental health

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.

Campaigning: A (brief) Guide for Inclusion

activism, politics, social attitudes, ,

Before Don told our political party of choice to go take a long walk off a short pier*, I used to be That Girl at Riding Association meetings, at committee meetings, and at rallies.

[You might be thinking “Why would your husband telling a political party to get lost mean you wouldn’t be part of them anymore?” Don told them to go away and they stopped calling and emailing me too. Which is why I don’t deal with them anymore. If you’re going to claim to be representative of women in Canada and then stop interacting with me because my husband told you off, then I guess my money and my time can go elsewhere.]

Anyway, That Girl. That Girl, who would say things like “When you mumble and look down when talking, it’s very hard for people who have hearing loss to understand what you’re saying.” That Girl, who would say “This website is horrible on accessibility issues. Can you suggest your webmaster develop a text-only version? And stop using PDFs instead of web pages!” That Girl, who still emails every political party in Canada once a month to ask for transcripts of their YouTube Videos. That Girl, who has only once seen a transcript, and has never received a response.

One of the problems with being That Girl, who points out problems with accessibility a lot, is people start assuming I’ll become their expert on All Issues About This, and, instead of paying someone to deal with such issues, will just demand a lot of my free time and efforts into making them look better. (They also figure it will shut me up. I’m not good at that.)

I don’t mind too much with groups I’m a part of that don’t really have much money and are run entirely by volunteers or overworked staffers. I find these groups are both interested in what I have to say, and grateful for what (limited) aid I can give them. However, political parties have money. They also have power and prestige, even if they’re not currently running the country or the province. In Nova Scotia, they can work with the Nova Scotia League for Equal Opportunity and get actual experts to discuss with them actual ways of making their campaigns, their offices, their rallies, and their literature as accessible as possible.

But, since that’s not possible for everyone, let me give you some free (and lengthy) advice on how to make your campaign (however you define campaign) more accessible for people with disabilities. This advice has been influenced and improved by talking to the folks who run the Nova Scotia League for Equal Opportunity, and I can’t thank them enough for sending a representative to the Campaign School I recently attended.

Clearly, not every person with a disability is going to have difficulties accessing your campaign information. As well, this advice will not magically ensure that your work is available for everyone. We’re talking broad generalities here, but at least we’re talking something. And even though I am That Girl who will snap at you that your rally isn’t accessible if you don’t have an interpreter for the Deaf, I’m also That Girl who will notice that you’ve done something, and tell other people about it.

But, the biggest thing you can do, if you’re really trying to reach and include people with disabilities, is broaden your understanding of what disability means. We are not all men in wheelchairs and women who are blind.

Continue reading Campaigning: A (brief) Guide for Inclusion →

Disability Activsm: Reading Rights

accessibility, activism, autonomy, disability activism, ,

Reading Rights is a US-based advocacy group that is campaigning to have equal access to electric book formats through text-to-speech on the Amazon Kindle. Their campaign is based around the American Author’s Guild demand that people must either prove their disability to the satisfaction of the Guild (and thus give private information over to e-book publishers) or pay extra for the same access to books.

As technology advances and more books move from hard-copy print to electronic formats, people with print disabilities deserve the opportunity to enjoy access to books on an equal basis with those who can read print.

People with print disabilities cannot effectively read print because of a visual, physical, perceptual, developmental, cognitive, or learning disability.

They maintain a news blog that focuses on print disabilities and access to books and textbooks.

Print Disabilities are a very big deal, and affect a large number of people. Text-to-speech capabilities aren’t a convenience, but a way for people with print disabilities to have access to books without waiting for the Book On Tape (or CD, or MP3) to come out. For some, this could “just” be having the latest book by their favourite author when it comes out, for others it could be the difference between passing and failing a university course.

Further Information:

Round Table on Information Access for People with Print Disabilities

The Round Table on Information Access for People with Print Disabilities facilitates and influences the production and use of quality alternative formats for people with print disabilities by optimising the evolving Round Table body of knowledge.

Continue reading Disability Activsm: Reading Rights →

Advocacy in Flawed Systems: Using Shackling Language to Help a PWD?

activism, class issues, language, social attitudes

In my professional life, I’m an advocate at a non-profit agency that provides free legal services to low-income folks. I work primarily in the area of public benefits, which means I’ve done a lot of work with the program from the Social Security Administration (SSA) to assist low-income folks with permanent disabilities: Supplemental Security Income (SSI).  When I read Lauredhel’s post about the language of shackling and the problem with terms like “wheelchair bound,” it reminded me of the type of problem advocates and people with disabilities encounter in navigating the SSI application process.

Some quick background on SSI — it’s a program from the Social Security Administration, but does not require past work history or employment where the individual was paying into the Social Security system. Those programs that do depend on past work history and contributions to Social Security are termed insurance programs, where a person who becomes disabled or turns 65 can collect disability or retirement insurance based on past contributions (premiums) paid to SSA. Those insurance programs are available to anyone who has paid in, regardless of income or resources — Donald Trump and Bill Gates will both collect retirement insurance starting at age 65.

SSI, on the other hand, is considered a “welfare” program, because it is based on the income and resources of the applicant and doesn’t depend on past contributions to SSA. A person has to be very low-income in order to qualify for SSI and there are strict limits on the resources a person can have, including property, bank accounts, or other assets. If a person qualifies for SSI, they receive a maximum Federal grant of $674 a month. Some states supplement that grant – in California, the maximum SSI grant is $850 a month.

Advocacy usually comes into play in determining whether or not an individual claimant is sufficiently disabled to qualify for SSI benefits. In order to qualify, an individual must have a physical or mental impairment that prevents them from engaging in substantial employment for a period of 12 months or more. When an individual applies, they turn in medical records, forms and statements from their doctors, and forms about their work activities and daily activities and general impairments. SSA then considers and often decides that the applicant is not disabled, requiring the person to go to an administrative hearing with an Administrative Law Judge (ALJ) to determine whether or not the person is disabled.

I represent people in this process and at these hearings, where my client’s goal is to convince the ALJ that they have a disability that prevents them from working and therefore should get SSI benefits. For many of my clients, SSI money is their only possibility for ongoing income that would allow them to keep their apartments, buy food, pay for medications, and otherwise survive. This means that convincing the ALJ that they are sufficiently disabled is of paramount importance to the clients.

And here’s where the dilemma arises. When evaluating clients, ALJs are not interested in nuance. They want to see a claimant whose disability limits or impairs their functioning so significantly that its a foregone conclusion that person will never be employed again. Any functional abilities a claimant has – regularly visiting with friends from church, doing their own grocery shopping or food preparation, ability to use public transportation – makes it more likely that the claimant will be found not disabled, so all of those abilities have to be excluded from the discussion or explained away as insignificant abilities. An ideal claimant would be someone in a coma.

This means that when I am advocating for an individual client, I need to ignore any and all functional abilities the person has while highlighting and emphasizing each and every functional limitation. I also need to show that this person is so affected by their disability that they are totally incapable of working. And it is when I am framing these arguments and drafting these briefs that I feel very uncomfortable. I find myself writing paragraphs like this:

Ms. R  is a 56 year old female who suffers from significant and severe physical and mental disabilities, including depression, anxiety, chronic back pain and headaches, and diabetes. She has lost interest in all activities, is so forgetful that she cannot leave the house for fear she will not be able to find her way back, and feels so useless and such a burden to her family that she thinks constantly of death and dying.

All of those things were true about Ms. R. But she also told great stories about how she used to hike in the Sierra Nevada Mountains and taught us how to make Cuban coffee and was an amazing singer. She was a great mother to her adult son, who loved her beyond measure and looked at her with adoration while she told us stories. But none of those characteristics were relevant to the SSI determination and if they’d been included in the brief, the ALJ would have been less likely to approve her application.

So when I’m writing a brief, I find myself playing to those stereotypes of restriction and limitation in order to fit into the ALJs pre-conceptions of what a person with a disability looks and acts like. I have no doubt I’ve used the term “confined to a wheelchair” in a brief. I wouldn’t be surprised if I’d described a claimant as “totally dependent on outside assistance for even basic functioning.” And I’m horribly conflicted every time – I’m advancing my client’s immediate goal of obtaining benefits that will allow them to stay housed and fed, but I’m perpetuating a negative stereotype of people with disabilities and reinforcing the flawed perspectives of the ALJs.

Because my ethical obligation to my client requires me to zealously pursue their goals of obtaining benefits, I’ll swallow my concerns and write a brief that makes them look as pathetic and incapable and needy as I possibly can. But this tension between serving the needs of individual clients while reinforcing a larger system of thinking about people with disabilities this way is a difficult one.

[Note: like the rest of my policy posts, this is entirely US-centric. This description of SSI regulations and requirements is not intended to be a guide for applicants, just a broad overview for purposes of this discussion. Do not rely on this information in seeking benefits.]

New Blog: You Make Me Feel Less Alone

activism, biography, media and pop culture, mental health

Samantha Schultz is the author of I Don’t Want to be Crazy, a free verse recounting of her struggles with her anxiety disorder. I haven’t personally read the book, but several of my friends speak highly of it and the Amazon reader reviews seem quite positive. (Although I would skip the School Library Report review, which commends Schultz for having “had the courage and wisdom to seek professional help.”)

After publishing the book, Schultz received a number of letters and emails and found that the most common sentiment was that the book had made people feel less alone in navigating their own mental illnesses. As she says, “I am honored to be your audience of one, but your story—like mine—has the power to help others.” In order to facilitate the sharing of stories and experiences from people who have a mental illness, she’s created a new blog, You Make Me Feel Less Alone,  for people to submit their stories and poems, which she will then post. There’s an option to have your submission posted anonymously as well.

As Schultz says on her blog, and as we clearly believe also, “Your words are powerful. Your words can help people.”

Why I Identify As Disabled

activism, identity, language, mental health, social attitudes

For a long time, I’ve struggled with whether or not to identify as ‘disabled’ (or as a ‘person with a disability.’) It’s only very recently that I’ve identified myself that way in my own thoughts, and even more recently that I’ve begun identifying that way publicly. (As in, my name listed as a contributor to this blog was pretty much my first public identification as a person with a disability.) Because I know a lot of other people who are unsure if they qualify as a person with a disability or are reluctant to identify as such, I thought it might be relevant to talk about some of my hesitations to identify this way and what finally convinced me that I do identify that way and why it was important to me to do so publicly.

My first reluctance came from what seems to be a very common concern – I did not think I was disabled ‘enough’ to identify as a person with a disability. At this point in my life, my disability is fairly well managed by medication and the approximately 900 million hours of therapy I’ve been through. My psychiatrist sees me once every 12 months to check on my blood levels and spend 10 minutes with me checking in, and other than that, I’m totally disengaged from the mental health care system. (Except for the pharmacy.) To everyone except those who know me extremely well, I pass as neurotypical. I work full time at a professional job. I live independently and manage my own household and finances. I often have days where the only thing relevant to my disability is the 30 seconds at night when I take my pills.  Surely I cannot be disabled!

But I realized that view erases the very real aspects of my disability that I continue to experience. The periods in my past when I was more severely impaired by my disability (including my hospitalization) still exist and are still a part of me, no matter how well managed my disability is now. And the cyclical nature of many mental health disabilities means that while I’m at a relative peak now, I could find myself in a deep trough at any time. And there are limitations involved even with the minimal treatment I’m receiving – I have to make sure I have a dose of meds with me in case I sleep at a friends’ one night, I have to deal with the punishing withdrawal symptoms when I forget to take a dose on evening, I have the dry mouth and the flaky skin and the lump of belly fat that are side effects of one of my meds. (And there’s my monthly tangle with the pharmacy refill system.)

More importantly, I know that if I tell anyone my diagnosis, if they find out about the hospitalization or the 900 million hours of therapy or the meds I’m taking now, I change in their eyes. It’s easier for them to dismiss my emotions as an artifact of my disorder and thus irrelevant. It’s easier for them to patronize me because they assume I’m not capable of taking care of myself. However I think of myself, I know they will think of me as a person with a disability. (Actually, I suspect many of them would think of me as a “crazy bitch.”)

I’ve also struggled with identifying as a person with a disability because of the split between mental and physical disabilities. Even when I began identifying as a person with a mental health disorder, I still didn’t think of that as being a person with a disability. I thought people with physical disabilities focused mainly on physical access issues, which weren’t at all relevant to me. I don’t need reserved parking spaces, I can walk up stairs, I don’t need a special restroom.

Then I realized how artificial the distinction is between mental and physical disabilities. When I have a panic attack, it affects me physically. When I am depressed, I have no energy and I can’t walk up stairs. I also realized the enormous overlap – lots of people have both mental and physical disabilities, and it’s common for the treatments for physical disabilities (like narcotic painkillers) to have cognitive effects. I also started talking to people with physical disabilities and heard them concerned with much more than physical access which, while very important, is not the sole focus.

All of that is not why I began identifying as a person with a disability, though. I thought of myself as an individual struggling with a very specific and individualized problem. I know other people with the same diagnosis as me, and all of us have had very different experiences and very different approaches to treatment. So I thought of myself as an exceptionally special snowflake that had some exceptionally special difficulties for me to go through, difficulties that nobody else had or would experience. So I thought about my mental health issues as they affected me personally, how they had changed my life, how they had made me the person I am today. But because they were so inherently unique, because nobody had gone through exactly what I’d gone through, I tended to think of my disorder not even in terms of my diagnosis, but in terms of “the very special snowflake disorder that only applies to me.”

Thinking of it that way meant that all the negative reactions I got, all the judgments I got, all the dismissals and marginalizations and refusals to take me seriously, all the hoops I had to jump through to get what other people had – they were just about me. Personally. They were not about how people responded to mental health problems, they were not about how people respond to and discriminate against people with disabilities as a group, they were about ME. I had brought them upon myself because of my disordered behavior, because my special snowflake-ness was so annoying or intolerable that people had no choice but to write me off.

Amandaw recently told me that she thought of disability as a political identity and I strongly agree. Thinking of myself as part of a group of people who routinely encountered oppression on the basis of their disabilities meant that the reactions I got, the disregard, the disgust thinly veiled as pity, the refusal to deal with my emotions and ideas – that wasn’t because of me. That was because I was part of a group subjected to systemic and institutionalized discrimination and oppression. And it was wrong. But it wasn’t until I started thinking of myself as part of that group and thinking about how these systems affected all of us that I needed a term for “people who are discriminated against or oppressed by our culture and institutions in the same way I am.” It wasn’t until I started thinking of it as a group issue, rather than an individual issue, that I needed a word for that group.

These systems that oppress us don’t care one whit about my special snowflake-ness. They don’t care about how well I’m doing now. These systems exclude and marginalize and dismiss and mock me based on my disability status without taking into account any of the individual variations in my life and my disability. And when I hear a caseworker explain that “you can always tell who is crazy because they live in cardboard boxes and tell people it’s a palace and they’re the king,” it feels like a slap in the face whether or not she knows I’m disabled. It’s about the systems, the institutionalized attitudes. It’s not about me.

Even after realizing all of this, I was still reluctant to identify publicly as a person with a disability. I would share details of my mental health history and the effects of my mental health conditions, but I still wouldn’t come out and identify myself as a person with a disability. At least, until I began talking and working with the amazing women who are my co-contributors on this blog. Because that’s when I realized that identifying publicly gave me power. Gave us power. Allowed us to come together as women who experience oppression and discrimination on the basis of our disabilities. Allowed us to work together to identify and address these problems, to find others affected in the same way, and to come together to try to change things. Thinking of myself as a super special snowflake made that kind of collaboration and support impossible, because nobody could be in my special snowflake group with me.

So while I’ll always think of myself as a pretty damn special snowflake, I also now think of myself as a woman with a disability. And identifying that way has allowed me access to power and support that I don’t think I could have found otherwise.

Note: I’m going to moderate this comment thread with a heavy hand to ensure that there is absolutely no policing of disability. If I self-identify as a person with a disability, I do not owe you the information of my diagnosis, my health history, or my therapy records to ‘prove’ that I am disabled. Similarly, I will respect how others self-identify if they are doing so in good faith and expect other commenters to do the same.

This is Hard

activism, identity, media and pop culture, mental health, Uncategorized

I sat down this evening to find some stuff I could write a few posts about. I went to google news and did a search for “mental illness” and one for “bipolar disorder” and looked through everything that had come up in the past week.

There was a fair amount of stuff – some workers in the CA Department of Mental health are working enough overtime to double their salaries, continuing involvement in your field of work after retiring may help mental health, some news updates on the British guy scheduled for execution in China – so I just picked out a couple of stories to look at.  I was specifically looking for something that would be positive or at least neutral – something that wasn’t about people with mental disabilities being violent criminals, or about how pharmaceutical companies are making money.

So I picked an article that seemed positive: a piece by Glenn Close in the Huffington Post about ending stigma. It’s titled Mental Illness: the Stigma of Silence, and there’s a lot in it that’s great. She criticizes the movie Fatal Attraction (in which she starred) for portraying her character as a dangerous psychopath and misrepresenting the reality of mental illness. She points out how other “topics that were once unspeakable,” like breast cancer and AIDS, have gained wide acceptance and awareness, while there is largely silence on the issue of mental illness. She is frustrated by the societal assumption that people with mental disabilities are lost causes. She even calls out ableist language like “‘crazy,’ ‘nuts,’ or ‘psycho’.”

But. She opens the piece by saying that “mental illness and [she] are no strangers” – and then cites her “challenge — and the privilege — of playing characters who have deep psychological wounds” as the basis of her authority. She also mentions that her “sister suffers from a bipolar disorder and [her] nephew from schizoaffective disorder” (emphasis mine). Which … isn’t great and made me frown a bit. But I could have overlooked that – it’s an article with a lot of visibility that makes strong arguments against stigma, it’s connected to an organization “that strives to inspire people to start talking openly about mental illness, to break through the silence and fear [and has] the support of every major, American mental health organization and numerous others.”

Except then I clicked through to the website of the organization, Bring Change 2 Mind. And here is the first thing I saw: (screencap of a video, so excuse the graphics)

Bring Change 2 Mind

I literally gasped out loud. She is a mom, his mom. And he is not even her son, not even a person, not even a person with schizophrenia, not even a schizophrenic, he is labeled with his diagnosis. There’s other photos on the front page- someone with a “post traumatic stress disorder” shirt, and Glenn Close (wearing a “sister” shirt) sitting next to her sister, who is wearing a “bipolar shirt.” And I closed the window. Any kind of anti-stigma campaign that would involve me wearing a shirt saying “bipolar” on it is not a campaign I want to be a part of. More power to those who did choose to be involved, but it just feels wrong and isolating to me. Like that is the only relevant characteristic of the person with mental illness, while people without mental illness are defined in terms of families, relationships to other people.

And that’s why this (and by ‘this’ I mean being a person with a mental disability) is so hard – even those allies who genuinely want to end stigma and address ableism can do things that feel like a slap in the face. We are embedded in a culture so steeped in ableism with institutions providing a long term structure for discrimination and dismissal that it shows up everywhere you look – even when you’re intentionally looking for something good and supportive. So some days it seems easier not to pay attention to mental health issues at all, because around any corner could be something like this.

Ableist Word Profile: Intelligence

101, Ableist Word Profile, activism, blaming, class issues, feminism, identity, intersectionality, justice, language, mental health, military, normality, shaming, social attitudes, , , , , , ,

Welcome to Ableist Word Profile, a (probably intermittent) series in which staffers will profile various ableist words, talk about how they are used, and talk about how to stop using them. Ableism is not feminism, so it’s important to talk about how to eradicate ableist language from our vocabularies. This post is marked 101, which means that the comments section is open to 101 questions and discussion. Please note that this post contains ableist language used for the purpose of discussion and criticism; you can get an idea from the title of the kind of ableist language which is going to be included in the discussion, and if that type of language is upsetting or triggering for you, you may want to skip this post.

Wait! you may be saying to yourselves. Kaninchen Zero, what the hell is ‘intelligence’ doing in the Ableist Word Profile series? Intelligence isn’t a disability!

Okay, so maybe you’re not saying that. But I’m serious. I hate this word. Hate the concept. With a hatred that is a pure and burning flame. True, part of this is because I get told all the time that I’m like wicked smart. When it’s some of the more toxic people in my family saying it, there’s more to it: You’re so intelligent so why are you poor? Other people use it as an opportunity to put themselves down: You’re so smart; I’m not; I could never do the things you do.

Does intelligence exist? At all?

Maybe it doesn’t.

There are tests that measure… something. They’re called Intelligence Quotient tests. The idea is that these tests actually measure some fundamental, real quality of human cognition — the people who believe in IQ believe that there’s a single quality that informs cognition as a whole and that people who have higher IQs have more of this and think better and perform better generally while people who have lower IQs have less of this quality and perform more poorly. Sorry; it’s a muddle of a definition, I know. Partly it’s a conceptual and linguistic problem — some things are not well defined and these things tend to be the things we consider to be fundamental. It’s much easier to define smaller things at the edges; it’s easy to define a fingernail. It’s harder to point to where blood stops flowing away from the heart and starts flowing back towards it.

The man who developed the first intelligence tests, Alfred Binet, wasn’t actually trying to measure intelligence. He’d done some work in neurology and psychology and education, and in 1899 he was asked to become a member of the Free Society for the Psychological Study of the Child. Primary education in France had become mandatory, so a lot of work on educational psychology was being done due to the large demand and the large available sample population. Binet, and others, were assigned to the Commission for the Retarded. (Again, please accept my apologies; I wouldn’t use the word if it were mine.)

The problem he was trying to solve was how to identify — consistently, without having to rely on the judgment of people who could be swayed by all sorts of personal biases (as we all are, including me) — those children who needed extra help. Maybe they had developmental disorders, maybe they had learning impairments along the lines of ADD/ADHD, dyscalculias, dyslexias, maybe malnutrition, injury, or childhood disease had caused neurological damage or limited development. The specific etiology wasn’t the point; the point was to be able to know who these children were and get them assistance. Which may be ascribing too-noble motives to him, but he doesn’t do so great later. Continue reading Ableist Word Profile: Intelligence →

Time and Energy, or Lack Thereof

accessibility, activism, bodies, feminism, introspective, normality, , , , , ,

This amazing post and its follow-up by Anna at Trouble in China (she is also a contributor here, as you may have noticed) got me thinking. [In the interest of full disclosure, my Shakesville post is in there as an example of the problematic nature of inclusiveness.]

Whenever I mention my personal blog in, say, a contributor’s or artist’s bio, I nearly always include the qualifier “sporadically updated.” Regular readers will know that this is partially my style–the dash of self-deprecation–but it masks something else. Namely: I very rarely have the energy to write a whole blog post, to respond to comments, or, hell, to comment on other blogs with wit and insight. This does not mean that I do not exist. It only means that I, quite simply, don’t always have the mental or physical energy to contribute to a medium that is, by and large, designed in favor of the non-disabled.

Before the inevitable questions of “why don’t you just quit?” arise, I keep and have kept blogging for a very specific reason: I cannot just give up. Certainly, there are better writers out there than me. There are better blogs. I have blog friends who are more articulate, more stylistically clever; some of these folks who blog more, or have more readers. Yet I know that the blogosphere is a bit wicked in that one is only as good as her or his last post (to use a worn cliche). Some of us can crank out quality posts nearly every day. Many of us cannot.

I often cannot keep up with a ‘sphere in which other voices–more able voices–have the luxury of time and actual emotional/physical energy to blog. The conspiracy theorist in me wants to chalk this up to the blogosphere’s–and to a lesser extent, the internet’s–design as yet another space where able-bodied folks can “fit,” and can be “productive” in terms of number and quality of posts. For all the talk of the internet as a utopia where one is free to not be embodied, the same old shit seems to keep coming up, along with the big ol’ Cthuluphant in the room: that the world is designed for able-bodied (and preferably white, straight, middle-class, and male) individuals. Productivity, fitting in, responding quickly: These are things that non-able-bodied folks may not be able to do, whether because of issues of time, energy, ease of access, or many other factors. What happens when one cannot type because of searing pain in her hands, wrists, arms? What happens when one finds that he is too brain-fogged to write a post, much less comment on an existing post that many other people have already commented upon? When one is confined to bed because of nausea or all-over pain that forces her to lie for hours, staring at the ceiling, doing nothing because it’s all too much? What happens is that much-needed voices are not part of the conversation. They are lost, but not because they are not there.

This is shameful. There is no other word for it.

Do I know where to begin in pursuit of a solution? No.

Does anyone? I am not sure. I would like to hope that someone does, but I remain unsure.

We’re here. You just might not know it, yet.

Originally posted at Ham.Blog

Ill

101, activism, blaming, identity, intersectionality, language, mental health, , , , ,

The topic of mental illness came up again with the latest large-scale hate crime against women to make national news. It’s a nice easy narrative for George Sodini to be a psycho, to be crazy, to be mentally ill because then we don’t have to understand him. We don’t have to relate, because we’re not like that.

Thing is, we’ll never know if Sodini was mentally ill or not. We can’t tell from what he left behind, and he’s no longer around to ask. The things he wrote aren’t all that unhinged; he just took the workaday hatred of black people and women that is everywhere in our society and picked up a gun and went hunting.

And the mentally ill means violent narrative is false anyway. Mental illness correlates with an increased risk of being a victim of violent crime, not of committing it.

It’s been said before, but it bears repeating because there’s so much silence and stigma and ignorance surrounding mental illness. I’ve had kind of a lot of experience with mental illness and the mental health professions. Some of it may be triggering.

I have taken (in no particular order) Prozac, Zoloft, Paxil, Effexor, Serzone, Xanax, Ativan, Risperdal. I’ve self-medicated with alcohol a lot and smoked cannabis and taken LSD when I could get it. I have been diagnosed, at various times, with clinical depression, bipolar type I disorder, bipolar type II disorder, borderline personality disorder, post-traumatic stress disorder, gender dysphoria disorder, depressive psychosis, and paranoia. I strongly suspect that I have Asperger’s Syndrome, which would explain a lot of my symptoms, behaviors, and difficulties. I have spent time in private and public psychiatric hospitals and spent years in weekly or twice-weekly therapy. I have damaged myself in ways ranging from very small — pulling on my hair repeatedly — to very serious — shooting myself in the left hand between the third and fourth metacarpal bones. I still have PTSD-like symptoms from the last and from growing up in an abusive environment, though episodes of it get farther apart as time passes. I have had suicidal thoughts that became elaborate plans. There were times that the only thing keeping me alive was someone needed to feed the cat. I am not alive for big important reasons; I am alive for small stupid reasons. I am alive because I didn’t want whoever found me to suffer the trauma of it. I have suffered delusions and intrusive thoughts and I have always had minor hallucinations (words printed on a page are red instead of black, patterns on a floor or wall shift while I look at them). I often have trouble understanding people when they talk and try to pass it off as being hard of hearing. I’m not; I hear fine. I have trouble processing auditory information and especially picking conversation out of background noise.

You’d think I was dangerous. I’m not. Really. I’m not even dangerous to me. Damaging myself — like it is for so many people who self-harm — is a way to stay alive, to cope with trauma. I have better ways to cope now and I don’t do that any more, but sometimes when I’ve had a really hard day and I hurt a lot and the noise in my head is very bad I remember how comforting it was to draw a blade across my arm, to feel the skin part, to see the blood well up, and how it made the noise go away for a while. Maybe it makes me crazy, but that is a warm fond memory for me. And it is what I needed to do when I needed to do it. I have the same memories about smoking, and I don’t do that these days either.

I’m much better now than I was. There are long periods where I don’t need psychiatric meds at all. But I am not cured and I never will be. I will always have mental illness in my life, just as I will always have fibromyalgia and physical pain. I’m back on an SNRI now and it’s helping and that’s good, because I could feel the old illness patterns coming back. Things have been bad lately with the economy. But I’ll be okay. I know how to cope with the bad things in ways that aren’t so drastic. There are people I can ask for help. I’m not alone.

Even if I am crazy.