Category Archives: accessibility

Jetstar, AGAIN – this time they refused passage to woman with guide dog

3 December, 2009accessibilitylauredhel

[Jetstar is a discount airline in Australia.]

Further to incidents where Jetstar expected Kurt Fearnley to cool his heels, completely dependent, in a non-self-propellable aisle chair for 90 minutes between checkin and boarding (“Let us drive the wheelchair! It’s safer!), and another incident where Trevor Carroll, being pushed in a chair by airline staff (after they broke his walking frame), was tipped on his head into a gutter (“No really, safer!”): Jetstar have gone the extra mile this week – refusing passage to a guide dog, then shouting at the customer.

The Age reports:

Blind pair says Jetstar refused guide dog

Two weeks ago, Glen Bracegirdle, who is significantly visually impaired but manages without a guide dog, called Jetstar’s call centre to book flights for himself and his partner, Kathryn Beaton. Ms Beaton requires the assistance of Prince, a four-year-old black labrador guide dog.

He said he explained that they would need to fly with the guide dog, at which point the clerk told him: ”No dogs, no dogs, no dogs.”

When he attempted to explain that the dog was trained by Guide Dogs Victoria, the clerk refused to budge*.

He said he was later cut off by a manager who became ”quite loud and angry”.

[*Jetstar’s written policies specifically note that dogs trained by Guide Dogs Victoria, among other trainers, are eligible to fly.]

Jetstar claimed this was a “breakdown in communication”, and once again claimed that they carry hundreds of passengers with disabilities each week without incident.

The couple have sent a complaint to the Human Rights Commission.

Question Time: Fantasy Assistive Devices

26 November, 2009accessibility, Question Timelauredhel

OK, so we’ve had the “what assistive devices I use” thread. Now it’s time for…

In My Dreams: Assistive Devices I WANT!

Stealing from meloukhia a little, I’d like a self-powered mobile bed-platform-thingo that contains all of my needs at easy reach: my laptop and all peripherals, assortment of pillows, my teetering bookpile, meds, water bottle, glasses and cleaning cloth, TENS, lip balm, moisturiser, and all the other necessities of life. And I want it to be able to move around corridors, and get outside, and up steps, so I can change scenery whenever I want. And fold down to fit in the car boot. And I want it to be socially acceptable to take it with me and lounge around wherever I go. Oh, and it should fly.

Dream away. Brainstorm. Fantasise. Invent. The sky’s the limit.

[Additional note: Devices, please, commenters. Not servants or slaves or “wives”. Devices.]

“Bad Cripple”

19 November, 2009accessibility, autonomy, blaming, shaming, social attitudesableism, accommodations, awareness, barriers to access, conceptions of disability, rethinking social norms, social treatmentAnna

Last month, I went to a non-partisan Campaign School, where women learned the nuts and bolts of running a winning campaign for political office in Canada. We all said a bit about ourselves, and I stood up and introduced myself as a Disability Rights Activist.

I spent the rest of the weekend being told how “Bad Cripples” are ruining the system for everyone else, and how every problem that I discussed, from how low disability-support payments were to how difficult it is to get around the city with a wheelchair, was caused by That Person.

You know That Person. The one Everyone Knows who doesn’t have a real disability. They could work – of course they could! – they’re just in it to scam the system. This One is bad because whatever he claims about his disability, it’s obviously exaggerated because no one could be in that much pain. That One is bad because she decided to move to another province where the disability support payments are better – obviously she’s just in it for the money.

Regardless of where someone fell in the political spectrum, they felt it very important that I knew that it wasn’t the government’s lack of support for people with disabilities and their families, it wasn’t the surplus of societal barriers, it wasn’t even their own individual fears of disability that caused any financial distress. It’s those Bad Cripples who scam the system and totally ruin it for the Good, Deserving Ones.

People tell me anecdotes about Their Friend (or a Friend of a Friend) who totally confessed to scamming the system, or they tell me about how Their Friend isn’t really disabled, and they can tell, because of X, Y, or Z.

I’m going to confess something to you: According to the way a lot of people define “Bad Cripples”, Don and I are really Bad Cripples.

I’ll start out with the comments. Both of us have very bleak senses of humour, and both of us (me especially) say some of the most awful things. These include things like “I just married him for the disability cheques,” “Damn it, I should have lied and told everyone your Cancer spread so I could get extra time to finish my assignments,” “Oh, Don fakes not being able to talk very loudly so he doesn’t have to deal with the Student Loan people”, and even “Oh, the wheelchair’s just for show.”

You might be thinking “That’s obviously you joking around, Anna! No one really thinks you’re serious.”

Yes, yes they do. All the time. I’ve been talked to by professors about my joking comments about Don’s Cancer, and asked not to make them in front of other students. I’ve gotten really angry @replies on twitter about some of them. I have an email I can’t quite get myself to delete that’s all about how I’m a horrible wife who’s just using Don for his money.

I have no doubt that people have said, either to you or someone you know, something that sounds like they’re just gaming the system, including a breezy “Oh, I’m just gaming the system.” But you have no idea if they’re serious or not, or what their circumstances are, or how much pressure they’re under, internally or externally, to “pass for normal”.

The second reason people think of “fakers” is the “I know stories of people who don’t have real disabilities and they get all this financial support!”

Here’s the thing: I don’t have an obligation to tell you what my ability status is.

My ability status is between me and my doctor. I have made the choice to share it with a few friends, and my husband. I don’t have to tell you. I don’t have to tell my teachers. I don’t have to tell the pharmacist, the person who’s demanding I justify my tax-status, or my landlord. I have not discussed it with Student Accessibility Services on campus. I have not disclosed to the people on any of the committee meetings I’m on. I didn’t tell anyone at Campaign School.

Because it is none of their business.

I do not owe it to you, or anyone else, to explain why we’re raking in those big disability cheques.

I also want you to consider that you don’t always know what disability will look like.

You can’t tell by looking at my friend with the mental health condition that she tried to climb out a third floor window and jump because she couldn’t take the idea of another day at her job, but you can probably tell she isn’t working right now while she recovers from the experience. You can’t tell by looking at my friend that she was bullied so badly at work that she has panic attacks whenever she thinks of stepping foot in the neighbourhood of her former workplace. Until Don got his cane, and then his wheelchair, lots of people wanted to know why he wasn’t working – aren’t people who have mobility issues always in wheelchairs?

I know people who tell me “Bad Cripple” stories are trying to be helpful. They want me to know that they understand how difficult it is, and that if it weren’t for all those Bad, Faking Cripples out there, Don and I wouldn’t be living entirely off the largess of his family and my scholarship money. (The government expects that I should take out student loans to pay for Don’s medication that he needs to live. Oh goody – overwhelming debt in exchange for a husband who lives! Thanks, Nova Scotia! You continue to be awesome. Yes, the big disability cheques comment was a joke.) What I think they don’t want to do is question why it is so difficult. Bad Cripple stories give us someone – a conveniently faceless group that Doesn’t Include Us – to blame.

I think a lot of people are going to rush to tell me stories about how this all may be true, but they totally know of this person who is totally lying about being disabled. Please consider whether or not that anecdote will contribute to a conversation, or just remind people with disabilities that they’re viewed with suspicion and have to prove their status to you.

Getting Through College with a Mental Disability

12 November, 2009accessibility, activism, class issues, intersectionality, justice, mental healthabby jean

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.

Disability Activsm: Reading Rights

10 November, 2009accessibility, activism, autonomy, disability activismdisability activism, print disabilities, reading rightsAnna

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 →

A Patient’s Guide to Lithium

7 November, 2009accessibility, medical practice, mental healthabby jean

I’ve been thinking lately about the blurred and perhaps ultimately nonexistent line between physical and mental disabilities. And how difficult it can be from the outside to understand why a certain accommodation is needed or a person could require physical accommodations for mental disabilities. And how sometimes the things that help me manage my disability can be really annoying and burdensome. And hey, I can illustrate all of those points by talking about one of my prescriptions – lithium. So please read along with this not at all official, comprehensive, or professional review of the medication!

Drug Description

Lithium is used primarily in the treatment of bipolar disorder and while it’s called a mood stabilizer, it’s more effective at controlling mania than it is depression. It’s not sufficient to control my depression, so I take some other stuff as well. I think it’s controlling my mania in that I haven’t been manic in at least 4 years or so.

Lithium carbonate is the actual compound used in the pills I take – the chemical element lithium with some carbons stuck on it, making it a salt. Lithium is pretty cool – it’s thought to have been created in the Big Bang, it’s the lightest metal and has kinds of industrial uses, including heat-resistant glass and ceramics, and it’s in batteries! It’s produced mainly in Chile and Argentina. It is also quite pretty and shiny. It was likely used as a treatment for mania beginning in the late 1800’s, but it was when Australian psychiatrist John Cade documented its effects in 1949 that usage became widespread. It was approved by the US Food & Drug Administration in 1970.

Indications and Dosage

Well, the main indication that it might be a drug for me was my wild and uncontrolled mania. I’d started on antidepressants to address my very serious depression, only to skyrocket into terrifying mania, put myself at immense risk, and end up hospitalized. At which point I was extremely interested in finding something that would prevent that from ever happening again. One would hope that doctors might be able to figure out an indication a bit earlier in the process, but hey.

Dosage has been 3 pills every day. I’ve taken thousands and thousands of them.

Clinical Pharmacology

I’m not a doctor, chemist, or pharmacist, so I’m not going to try to talk about what the drug may or may not be doing to this or that neurotransmitter or neuron reuptake process. Especially since most sources say, basically, “It is not really known how lithium works.” If you’re a pharma nerd like some people I know, you may enjoy reading some alternate theories of the effect of lithium on the brain – here’s a good place to start.

Side Effects

“Fine hand tremor, polyuria, and mild thirst may occur during initial therapy for the acute manic phase, and may persist throughout treatment. Transient and mild nausea and general discomfort may also appear during the first few days of lithium administration.”

My hands hardly shake at all anymore, but there were years where they would tremble almost all the time. I had a very hard time with fine motor skills like handwriting (or putting on eyeliner – yikes). My polyuria (lots of peeing!) is directly related to my mild thirst – it’s very rare to see me without a beverage. I make sure I have lots of liquids in the car, I smuggle something into the movie theater because I can’t go that long without drinking something. These all have or continue to require accommodation – my hand tremor meant I couldn’t take exams by hand and my signature would sometimes look a little different (which was really fun to try to explain to the bank). I have to pay the exorbitant prices for bottled water in airport terminals so I have enough to drink on planes. When going to court for work, I have had vigorous discussions with the sheriffs manning the metal detectors at courthouse doors about whether I’m allowed to bring my water bottle inside (conclusion: plastic bottles ok, aluminum reusable bottle not ok, average delay created by water bottle issue is 10 minutes every time I go to court). It is of course not at all obvious how these accommodation needs are associated with my underlying mental disability, which makes people doubt whether I “really need” these accommodations and why I could possibly have muscle issues when I have a mental illness.

“Muscle hyperirritability (including twitching), stupor, nausea, indigestion, drying and thinning of hair, psoriasis.”

I do have muscle twitches, especially my left eyelid. I do need at least 9 hours of sleep a night, but that could be my other meds or my depression rather than a side effect. Nausea and indigestions persist, but nothing as bad as when I first went on the meds and had to get up to take them exactly on time and sit out in the dorm hall at 6am eating a bowl of cereal so I would neither wake up my roommate or throw up my pills. My hair and scalp are definitely affected – I have dry flaking skin on my scalp and, in a recent development, along my eyebrows! Yay! I haven’t yet needed accommodations from work to get sufficient sleep, but often times find myself explaining to friends that while I really would like to go to such and such event on a weeknight, I have to be home and in bed by 10pm, non-negotiably. This leads them to think of me as not very fun and a bit of a fuddy duddy.

“Weight gain”

There’s definitely a significant correlation between lithium and weight gain. Blah.

Warnings and Precautions

It turns out that the therapeutic level of lithium is pretty close to the toxic level of lithium and the amount of the drug in the bloodstream has to be carefully regulated. Because lithium carbonate is a salt, it can build up in the kidneys, which means that my water and salt intake also make a difference to my lithium levels. So the drugs come with a warning to “avoid becoming overheated or dehydrated during exercise and in hot weather” and to be careful about consuming not enough or too much liquid. Once after walking up a long hill on a hot sunny day, I could feel that I’d sweat too much and was very dizzy and confused from the concentration of the drug in my system and since then have been much more careful.

Taking a dose that is so close to being toxic also means that I periodically have my blood tested to measure the levels. It’s a bit of a hassle, as it has to be done first thing in the morning without having eaten and it’s in the opposite direction from work and the parking garage there is a nightmare. And I don’t love getting stuck with a needle, though I’ve found I can avoid getting lightheaded if I just don’t look at the blood coming out. The worst part for me is the bruise I get – I bruise easily so even a clean stick leaves the inside of my elbow blue and purple. And no, jokes about how I look like a heroin user are not funny, and yes, trying to cover it up when I go to court or meet with a client can be quite a hassle. (Especially as I have a history of self-harm and thus a history of trying to cover up my arms to avoid comments, this is also a bit of a trigger for me.)

Usage in Pregnancy or Nursing

Lithium is in the US FDA Pregnancy Category D, meaning “There is positive evidence of human fetal risk based on adverse reaction data from investigational or marketing experience or studies in humans, but potential benefits may warrant use of the drug in pregnant women despite potential risks.” NAMI has a very good discussion of risks and considerations during pregnancy, including a recognition that for some women, it’s not an option to stop taking it. It does pass into breast milk and can be transferred to an infant.

I think about this a lot. Even if I weren’t worried about the risks of passing on my bipolar disorder to my child, I do not think that going off lithium for any period of time would be safe for me. While it’s possible to stay on it during pregnancy, it does create risks and is certainly a far cry from friends of mine who are eating only hand-prepared food during their pregnancies to avoid preservatives and chemical additives.

Summary

Except for a brief flirtation with Depakote years and years ago, me and lithium have been hot and heavy since the way back. And because I expect us to be together forever, I see these side effects and potential toxicity as realities that I have to accept into my life and accommodate as best I can rather than things I could choose to be without. And I’d likely put up with a whole lot more than this before I considered breaking up. I just wish people could understand us better and help me get what I need – water, blood tests, tolerance for wonky handwriting – so our relationship can work.

Mental Health Coverage Makes Economic Sense

5 November, 2009accessibility, class issues, justice, medical practice, mental healthabby jean

There are a lot of reasons to support health care reform and the inclusion of mental health treatment in that reform. I personally support it because I think health care (including mental health care) should be a basic human right of every human being and believe our government has a moral and humanitarian obligation to provide it to everyone.

But for those not convinced by that argument, there are some strong economic arguments for providing access to mental health coverage. First, evidence shows that overall health costs decrease when mental health care is covered. Second, tax dollars spent on mental health care tend to save tax dollars in other areas, including law enforcement, jails and prisons, homeless services, and emergency room visits – so spending money on mental health services saves money in other areas.

It’s clear that increased mental health coverage would result in increased usage of mental health services. A study by RAND in the 1980s found that decreased out-of-pocket costs for consumers significantly increased usage of outpatient mental health services, much more of an increase than demand for ambulatory health services. Even with this increased demand for services, though, overall costs are reduced, because an increase in mental health spending “yields concomitant decreases in total health expenditures and employee absences.” A study of an individual employer-based insurance policy found that the savings from decreasing coverage of mental health were entirely canceled out by increased physical health costs. Additionally, untreated behavioral health problems create significant costs for employers in terms of short-term disability absences. So even though increased mental health coverage would result in increased demand for and spending on mental health services, overall health coverage costs would stay the same or decrease due to the benefits of the mental health treatment. (See SAMHSA for citations)

Additionally, the effect of mental health coverage in reducing city and state expenditures on services such as law enforcement, jails, and homeless services is well established. After California expanded community mental health services through a ballot proposition, counties reported dramatically reduced use of emergency room visits for mental health issues. Transitional age youth (18-25) provided with mental health coverage achieved a 76% reduction in days homeless and a 49% reduction in days hospitalized. Adult participants achieved an 89% reduction in days spent homeless and about a 40% decrease in incarceration. These effects significantly reduce expenditures by cities and counties to treat the symptoms and consequences of untreated mental health disabilities – while at the same time allowing individuals to live their life without risk of homelessness or incarceration due to their disabilities.

Again, I would support expanded coverage of mental health services even if there were a cost associated with it. But because we can provide these services while saving money spent on physical health care and reduce the need for emergency rooms, homeless shelters, and jails to be primary mental health providers, there’s a very strong economic argument that we need to provide this coverage.

Getting It Wrong: Rate Your Students and Ableism

4 November, 2009accessibility, bad advice, blaming, bodies, identity, language, normality, shaming, social attitudesableism, learning disability, problematic attitudes, universityAnnaham

[Possible trigger warning for upsetting and ableist language]

As some of you may know, I am a graduate student getting my Master’s Degree in Women and Gender Studies. I currently have vague career aspirations of getting my PhD or at least remaining in academia in some capacity; my academic interests primarily have to do with feminist disability theory and the body.

I was an undergrad when I discovered Rate Your Students, a blog for college professors and TAs to rant, with anonymity, about the wonderful world of academia–including its apparent hordes of clueless undergrads. I can’t quite remember how I stumbled upon it, but I found it very refreshing. I was probably what the RYS denizens would call a “special snowflake”, or “snowflake” for short–that is, an overeager student who is convinced of zie’s own specialness (however, my low self-esteem may negate such a categorization)–but I found the site a welcome break from dealing with fellow undergrads at my school, many of whom, I felt, fit the “snowflake” categorization perfectly.

Given my disability and resulting limited energy, during this time I was privately contemptuous of those whom I percieved to be slacking and getting away with it, particularly when I was assigned to work with them on group projects or in discussion cohorts. Inevitably, I would be the one who led the group in discussion–even when I had been the only one to have done the reading–or the one who would do most of the “group” project planning and resulting work. I do not say this to toot my own horn; this information is meant to be context for the reasons that I started reading RYS in the first place.

After this week’s posts on accommodation(s) for students with disabilities, however, I am seriously rethinking my earlier enthusiasm for the site. One professor sent a query to the other readers of the site:

How do you teach a student…who clearly has severe intellectual developmental issues? How do you make sure the other students aren’t held back? What if your course is a small seminar course, not a large course? You have to spend a lot of one-on-one time with one at the expense of several. Why doesn’t the university provide resources for you and this student?

Am I bad teacher for not knowing how to deal with this? Or for not wanting to?

The responses are a motley bunch (the [+] markers denote different responses from different folks), ranging from the awesome to the somewhat reasonable to the awful:

Anyway, I don’t think too much of students who come to me with a letter demanding time-and-a-half on tests. Nor do I pity the poor fucktards when I think of their asking a future boss for time-and-a-half on a project. There are some students who are truly disabled, and truly need accommodations. But ADD is a sad joke. It puts us at the beck and call of every spoiled tool whose parents can find a quack to label the kid as ADD.

I am an academic. I am also a person with disabilities. I know, furthermore, that “difficult” students exist, and in some cases, universities do not provide clear policies for faculty when dealing with students with disabilities. Professors, however, are not usually assigned to be the disability police, and with good reason (see above). From the glut of postings on this topic, the message that I am getting–as a person with multiple disabilities, both physical and other–is that I do not belong in the academy. People with severe emotional or mental health issues, apparently, do not belong in the academy because they freak out the “normal” folks. Furthermore, if I choose to disclose my disability to faculty, I may be subject to disbelief and doubt, due to their past experiences with disabled students. Hell, someone might even rant about me on RYS if I piss them off enough!

I respect the fact that RYS is a site for professors to anonymously vent; all of us need those spaces. Some of us, however, are both hopeful professors and people with disabilities. Privileged displays of ableism like the above are asking some of us to side against our own, which many of us cannot do.

The TRICARE Pharmacy and the Second Shift

1 November, 2009accessibility, military, Uncategorizeddrugs are bad mmm'kay, military, TRICAREOuyang Dan

Moderatix note: This post will be United States Military centric, as that is the perspective I offer, and the broken system within which I currently exist and attempt to navigate. Other voices are welcome and experiences appreciated within the context of the conversation, since I can not pretend to know every thing about every military experience from every branch in every country.

Background on the Second Shift for the Disabled here and here.

When I have to run several errands I try to put them all into one day. There are up sides and down sides to this, the upside being that I don’t have to drag myself into the main post multiple days, the down being that it is almost guaranteed that I will be doing nothing for the next couple of days except bonding with my sofa. Getting to the main post itself is an ordeal, figuring out if I can make it to the bus stop or if I should spring for a taxi, both which require considerable walking, and then it is another ordeal getting from one building to the next, timing getting back to the smaller post to pick up The Kid from her bus and getting home.

But life is full of things that require this type of planning, not the least of which is refilling medication. I saw that I was needing refills on my main medications so I planned this trip to coincide with some other business I had to take care of.

The pharmacy is a time suck. There is really no other way to describe it. Everyone, active duty, dependent, civilian contractor and retiree alike use the TRICARE pharmacy, and it is pretty busy all the hours it is open. There is a website where a person can enter their scripts ahead of time “to avoid waiting”, but all this really saves is the five minutes you wait at the window while the pharmacist fills the bottles, since they won’t fill a bottle for a controlled substance until you sign for it anyhow.

I currently take two medications that are considered controlled substances by the DEA and FDA. I am not familiar with schedules and what gets thrown on what schedule list and by whom, but I know that this adds extra hoops to my refills. I was not made aware by my doctor just how many. After doing the usual line dance involved to get a new fill for my pregabalin (because you don’t get “refills” on this, you only get new scripts) I showed up at the pharmacy window. I knew that there was going to be trouble when the pharmacist saw me and immediately called over an Army Medic to talk to me.

The Medic asked for my form. The blank stare on my face told him that I had no idea what he was talking about. He repeated his question, adding that it was the approval form for my pregabalin. When I told him that no one mentioned any form and that I didn’t have one he informed me that he filled my script last month on a verbal OK and was not going to do so again. I needed to go back and find the prescribing doctor (yeah, because it is that easy) and get the form. The thing is, the prescribing doctor isn’t my doctor, because all controlled substances have to be signed off by a doctor of a certain rank, and my doctor is a civilian. I have never met this doctor. He simply approves my meds, and my PCM is on leave. Now, mind you, I have already gone through several steps just to have this doctor order this medication with my PCM on leave, which is only one extra step than with her physically here.

As it turns out, not only is pregabalin a controlled substance, but it is also categorized as a TRICARE Non-Formulary medication. TRICARE classifies medications like this: There is a list of prescription medications that must be kept in stock at all MTFs called the Uniform Formulary. This is broken into two categories, generic and name brand. Then there is TRICARE Non-Formulary. From the website:

Any drug in a therapeutic class determined to be not as relatively clinically effective or not as cost-effective as other drugs in the class may be recommended for placement in the non-formulary tier, Tier 3. Any drugs placed into Tier 3 are available to you from the mail-order or retail network pharmacies, but at a higher cost. Prescriptions for non-formulary medications can be filled at the formulary costs if your provider can establish medical necessity.

I have to get my doctor to prove that this medication is better than all the other medications in the formulary for me, which wouldn’t be frustrating if I hadn’t had three doctors beat me with the “Well, if you don’t want to get better then don’t try Lyrica” dead horse the minute it was FDA approved. *ahem*

The rub is that apparently I am expected to personally know of and make sure that these forms are filled out and hand delivered. I knew that approval had to be given by an appropriate ranking doctor, but not that I had to get it in person. So Mr. Medic Pharmacist sent me over to find the prescribing doctor who wanted to review my patient history, again, because he can’t be bothered to run my Sponsor’s last four into the computer and look at it when he writes my scripts. I had to go find the doctor, review my history, and hand carry the form back to the pharmacy, only to find that the doctor came along five minutes later to make sure everything was fine (the doctor turned out to be pretty great, actually).

This has to be done every month, because non-formulary meds can only be given in one month amounts.

At any time a board of doctors can decide that something in the other two tiers is more cost effective for me and deny me the pregabalin, even if my doctors believe this is the best course of treatment, even if I have been on this medication before, even though I have already adjusted to the many side effects, and even if the Flying Spaghetti Monster hirself descended and said it should be so…

This paper trail runaround is a nightmare for someone with limited resources of energy and time. It literally took me two hours to fill one prescription bottle, most of that time spent walking from one end of the building to the other (with a fun fire drill in the middle!). This kind of running around puts significant strain on those resources, and for me it left me literally unable to do much the next day, needing extra hours of sleep and more pain medication to recover. Now that I know the process I can plan ahead, but the knowledge is part of the problem. We can be vigilant with our care, question our doctors in the precious time we have one on one with them, phone and email and re-check every thing, but still, some of us have to push our resources further. It’s terrible, and it shouldn’t have to be this hard. Not for our basic needs. Insult to injury is that this is what is going on in our military health system. Our troops and veterans are doing this run around.

It’s a great thank you. Really.

FWD/Forward

FWD (feminists with disabilities) for a way forward