All posts by abby jean

Which Is Worse: Reality TV or the commentary on it?

blaming, media and pop culture, mental health, shaming, social attitudes, television

I’d heard mentions recently of the show Hoarders, on A&E. (I’m not going to link to their site.) The show, from what I gather, is a series with episodes focusing on individuals who compulsively hoard possessions. I’ve never watched it and do not plan to, as I’m extremely uneasy about television shows that focus on people in crisis to, well, entertain other people. I have the same issues with Intervention (also an A&E show) and the Celebrity Rehab/Sober House/Sex Addicts shows with Dr. Drew. I understand that on some level, they could be useful or educational or contribute to diminishing stigma and demystifying therapy and counseling, but mostly it just feels like taking advantage of people who are dealing with addiction or disability.

This is especially true as the core of all reality tv is, of course, drama – so the shows focus on people in absolute crisis, at proverbial rock bottom, relapses and failures. And the drama is heightened when the person’s disability or addiction is as extreme as possible. So the Hoarders show focuses on people who are extreme hoarders, having lost friends and family because of their compulsions, not someone who has a drawer in the kitchen filled with old takeout menus. This extremely heightens the message that the person in the show is an “other,” a “freak,” to be gawked at.

And that’s the problem – even if I never watch these shows, there are still people who watch them and then talk or write about them. I’ve managed to avoid the worst of it, but commenter Penny, catastrophe discovered this “gem” at Jezebel and sent it my way as an example of the ableism at its extreme. It’s bad enough that before I go any further, I should warn you that some of the quotes are truly horrifying and you may not want to read them. We start off on a great foot with the title: “Sometimes, A Hoarder Just Can’t Be Helped.”

The very first sentence of the post informs us that the author found Augustine, the woman who is the focus of this episode of Hoarders, “frankly, very hard to empathize with.” Red flag! You are not watching this television show to determine whether the person with a disability is worthy of your empathy! Or rather, if you are, you should turn the tv off immediately. This is a real woman, a person, a human. The premise of the show, indeed the title of the show, indicates that she has a disability that has had a monumental effect on her life and functioning. If you are watching a show about her without empathy, then you’re just pointing at a sideshow freak.

The post then goes on to applaud the professional counselors who come to help Augustine, “who miraculously remain positive and chipper throughout the entire ordeal” even though there is stuff in the hoarded material that the author clearly considers to be super duper gross. But in the author’s eyes, Augustine’s biggest sin is not hoarding icky things, it is that she “has no remorse for what her actions have done to her family and her community … and absolutely no gratitude toward the people who are trying to help her stay in her home. She only blames other people for her situation.” This is the point in the post where my jaw actually dropped open. Yes, the woman who the show profiles specifically and explicitly because she has extreme compulsions to hoard … has strong compulsions to hoard! The author seems to think that Augustine has been hoarding out of spite or stubbornness and now that these people are helping her, she will just “snap out of it” and repent. But that’s not how a disability works. And blaming Augustine for not being magically cured of her disability during the course of taping is cruel and ableist.

But wait – it gets even worse. We are not done applauding these saintly folk who have taken time out of their days to help this woman with a disability who does not even appreciate all that they are doing for her. “Watching this episode, it’s impossible not to be struck by the generosity and caring of the people who are helping Augustine, and to wonder if their resources couldn’t be used helping other people who actually want to change.” Yup. That’s a direct quote, really. Or, in other words, Hey, we sent a counselor down there, and she didn’t immediately change her entire life and patterns of thinking. So fuck her. We’re done with her. Because this woman with a disability didn’t act the way we wanted her to. “Augustine seems less like a person with a compulsion caused by feelings of loss who desperately wants to get her life in control, and more like the clinical definition of a sociopath.” Or, because she wasn’t disabled in the way the author expected her to be disabled, we should give up on her.

So for me, the commentary is worse than the show itself. The show just places the person with a disability in the public eye – it takes a member of the public to do the pointing and laughing.

Reading List: Mental Health Diversion Courts

justice, mental health, reading list, recommended reading, Uncategorized

Yes, this looks like our daily Recommended Reading posts that Anna does for us every day – but it’s different. Reading List is a selection of links around a single issue or topic, as a start for those interested in exploring it further. The initial edition, on mental health diversion courts, was sparked when I came across the first article:

Susan Thornton, “A court for mental illness,” Denver Post, Nov 15, 2009

History will be made in Colorado’s 18th Judicial District this week when Colorado’s first districtwide adult Mental Health Court will convene to hear the case of “Robert,” age 37. Robert has bipolar disorder. He frequently goes off his medication, hasn’t followed through with treatment plans, has attempted suicide, and has been hospitalized three times. He has several prior convictions for shoplifting, violating restraining orders and resisting arrest. Now he says he wants to figure out a better way to live, and has volunteered for the Mental Health Court.

The court is a specialized treatment court designed to divert nonviolent felony offenders who have a serious mental illness such as bipolar disorder, schizophrenia or major depression, as well as those with a combination of mental illness and substance abuse. It is not open to those with violent behavior or to sex offenders.

Most of the people who’ll come before the court have been repeatedly in and out of jail. They’ve been charged with minor offenses that result from their mental illness, things like being a public nuisance, drinking in public, and shoplifting. They’re charged with a felony because of the cost of items they’ve stolen or damaged. Usually they have been off their medications because they can’t afford them, and live in and out of shelters.

Each participant will have an intensive treatment plan, including case management and medications, and will be closely monitored by probation officers and mental health professionals. Treatment addresses the mental illness, recurring substance abuse and criminal thinking. There will be incentives for compliance, and sanctions for non-compliance that may include re-sentencing.

This article by the Bazelon Center for Mental Health Law gives a good overview of why the current use of the criminal court system to address mental illness is so problematic, including these statistics on the scope of the problem:

  • Approximately a quarter million individuals with severe mental illnesses are incarcerated at any given moment—about half arrested for non-violent offenses, such as trespassing or disorderly conduct.” This does not include more than half a million probationers with serious mental illnesses.
  • Sixteen percent of state and local inmates suffer from a mental illness and most receive no treatment beyond medication.”
  • During street encounters, police officers are almost twice as likely to arrest someone who appears to have a mental illness. A Chicago study of thousands of police encounters found that 47 percent of people with a mental illness were arrested, while only 28 percent of individuals without a mental illness were arrested for the same behavior.

The same Bazelon article also has a nice outline of the role of mental health courts (as well as detailed analyses of different models of these courts and recommendations for improvements):

From the criminal law perspective, two rationales underlie the therapeutic court approach: first, to protect the public by addressing the mental illness that contributed to the criminal act, thereby reducing recidivism, and second, to recognize that criminal sanctions, whether intended as punishments or deterrents, are neither effective nor morally appropriate when mental illness is a significant cause of the criminal act. The goals of mental health courts, then, are: 1) to break the cycle of worsening mental illness and criminal behavior that begins with the failure of the community mental health system and is accelerated by the inadequacy of treatment in prisons and jails; and 2) to provide effective treatment options instead of the usual criminal sanctions for offenders with mental illnesses.

There’s also a nice overview of the mental health courts at Frontline, from their series “The New Asylums,” devoted to the stories and issues of people with mental illness in state prisons. The site lets you watch the whole program online and provides a separate complete transcript. There’s also an interactive state-by-state map so you can find information on specific states.

One reason these courts are becoming increasingly popular is because of their fiscal effect – it is more difficult and expensive to incarcerate a person with mental illness than a neurotypical inmate. For the super-wonky, here’s a detailed report from RAND on the fiscal impact of a mental health in Allegheny County, Pennsylvania. It found that the costs of providing treatment and services was more than offset by the savings in jail costs. The National Center for State Courts also has a great list of resources on these courts, including lots of studies on fiscal impact.

This is a big part of why there’s significant governmental support for these courts. The Federal Department of Justice provides assistance and resources to communities who want to begin mental health courts. The Council of State Governments Justice Center provides technical support and information to communities working with the DOJ, including a list of essential elements in a mental health court and a practical guide to mental health court design and implementation.

I am not nearly as familiar with court systems outside the US, but even some cursory googling shows that these exist in some model in places including South Australia, England (although the report notes they’re not achieving their potential), Canada, and, um, some places in the European Union.

I also include the significant caveat that the ideas behind and goals of these courts are only as good as their implementation, and that can vary a lot. Not every court is great and even if they worked perfectly, there would still be a lot of problems with the criminal justice system’s relationship with people with disabilities overall.

If you have information on mental health courts in other areas or other great resources, please drop them in the comments!

Meet a Contributor: abby jean!

meet a contributor

So everyone can get to know our contributors a bit better, we’ve decided to run a series called “Meet a Contributor”. Each Contributor will be interviewed by the others in turn.

Hi! I’m abby jean. I live in sunny Southern California and am an attorney in the public interest field, which means I work primarily on civil rights issues affecting low-income folks, including not only disability rights but also issues around language access, immigration status, and domestic violence. Right now I’m focusing on rights in the welfare system and issues around access to health care.  As you may have noticed, I am usually an all-lowercase girl, but am using these newfangled capital letter thingies in my FWD posts – only to relapse to all lowercase in comments.

The other huge area of my life is music – I used to dj in local dance clubs when I could still handle getting only 3 hours of sleep before going to my lawyer job – so I’ll start with the questions from Chally (What kind of music do you like?) and Annaham (“If you were going to a deserted tropical island and could only bring 5 albums, which would you bring?”) in one lump.

I like a whole lot of different kinds of music, but I favor pretty much anything with female vocalists. I like a lot of indie music, but I also love pop music and listen to a fair amount of hip-hop, even though I sometimes have misgivings about the violent and misogynist content. I’m not a huge fan of opera or ambient electronica or noise metal, but none of that is totally off the table, either. I do, however, have some core artists to whom I go back over and over again – and those are the albums I would bring to a deserted tropical island.

First, I’d bring a magical cd that contains the entire works of Tori Amos from Little Earthquakes to To Venus and Back. I used to follow Tori extremely closely – I had all the b-sides and live recordings and alternate versions and between 1994 and 2003 or so, I saw her in concert about 45 times. While I’m not nearly as invested in her later work, she’ll always be important to me and her music resonates for me in a way few others do. Second, another magical cd with the complete works of PJ Harvey. Her perspectives on femininity, and its power, were extremely influential on my ideas of what it means to be a woman. And especially what it means to be an angry woman, and how to use and channel that rage and energy. Third, another magical cd (you may quibble with these magic cds but you are sending me to a deserted tropical island which is also quite unreasonable) with the complete works of Nine Inch Nails. I’ve been listening to them since Pretty Hate Machine and this year was lucky enough to go to three of the concerns on their final tour. To me, nothing compares to standing with a huge group of people, united by the music, screaming along with the lyrics, with everything so loud and powerful there’s no room for thought or worry or anything but sound. Fourth, I’d go with another magical cd of Le Tigre to pep me up a bit – they’re still strongly feminist and political, but they make me dance and dance and dance. I also adore Kathleen Hanna, formerly of Bikini Kill, and will listen to anything with which she’s even tangentially involved. Finally: Britney Spears. You can’t think all the time.

Meloukhia asked “I can’t help but notice that you follow sports…do you have a favourite sport/team?” Mel noticed my interest in sports because my twitter feed often spits out a series of twits along the lines of “dear dodgers i’m not a team manager or anything but i think it helps to HIT THE DAMN BALL” and other ire when things aren’t going right for my teams. I actually follow sports mainly because of relationships with friends and family – I follow the Dodgers because I live in LA and need to be up on it at work (though nothing could convince me to care about either the Lakers or the NBA as a general concept), I vaguely follow some NFL teams because friends of mine follow them, but most of my sports love is tied up with teams my dad likes. We used to go to baseball games together when I was in middle school, and I’d bring my math homework and we’d calculate the batting average of the players for each at bat. We are also BIG BIG fans of the University of Kansas Jayhawks in NCAA college basketball – there are pictures of me in my crib wearing Jayhawks gear. BEAK EM HAWKS!

AnnaP asked “If I gave you one million Canadian dollars, and told you that they had to go to charity, but not just one charity, how would you divide up your one million Canadian dollars? It doesn’t have to go to Canadian charities, it’s just that one million US dollars looks like a lot of money, and I only have Canadian money.” I’d like first to question why we allow these Canadians to have dollars of their own. But to address the actual question: I’d give some to Planned Parenthood or another reproductive health rights organization. I’d give some to the American Civil Liberties Union so they can keep doing the essential work of forcing our government to comply with the Constitution. And then I’d give the rest, the majority, to an organization or movement working to provide a right to representation in civil court. In the United States, people charged with crimes are guaranteed an attorney to represent them in court, regardless of their ability to pay. There is no such right in civil court, so people being evicted, trying to get restraining orders, or being charged with enormous debts can only obtain representation if they can pay for it or if they can find a legal aid organization with resources to represent them. In my mind, this guarantees unjust outcomes based on ability to obtain representation rather than the actual merits of a case, making it more likely that low-income folks will be subject to court orders that don’t protect their rights. This access to meaningful justice is an extremely important issue and one I’d very much like to support.

Kaninchenzero asked “Do you agree or disagree with the following statement? Yoshinoya Beef Bowl is one of the top three fast food chains in Southern California. Discuss.” That may be true, but I don’t think I’ve ever actually eaten at a Yoshinoya. My preferred fast food is TACOS. From taquerias, from taco trucks, from the grills they set up in tents along the side of the street late at night. They’re all just a little bit different, the salsas are all different kinds of ‘burn the hell out of your mouth’ spicy, and standing on a sidewalk with a bunch of other people waiting for your tacos to come up is a SoCal rite of passage. (So is trying to eat the tacos while walking without spilling all your onions and cilantro.) For anyone in LA, the best tacos in the entire world are the asada tacos from La Estrella in Highland Park, but I’m always looking for new places I haven’t yet tried and have driven all over the southland in search of rumored deliciousness.

Amandaw asked “Is that your picture? If so, what’s the story???” The photo she’s referring to is this one:

It is indeed me, and ties in to my regular attempts to explore undiscovered corners of the southland (which I call “going on an adventure.”) A while ago, we all went down to Irvine or Anaheim or one of the areas of Orange County just over the border of the county line, to go to the Orange County Barbeque Festival. (If you made me choose between eating tacos or eating BBQ I would have a hard time deciding.) After eating approximately my body weight in pulled pork and ribs, we were driving back home by a circuitous route and found ourselves passing by the Richard Nixon Presidential Library in Yorba Linda – something so amazing it was mandatory that we stop and explore it. It turns out that 4 giggling hipsters was not exactly what the library was expecting, and the pearls-n-suit wearing conservative lady working the lobby was none too pleased. I bought a “Nixon Il Capo” button and a postcard of him shaking hands with Elvis, and then went outside to the marvelous fountain in the parking lot. This photo is me, mid-balletic leap, in front of that fountain.

Lauredhel asked “What art or craft that you’re not accomplished at would you most like to be, and why?” Oooh. Screenprinting, or graffiti, or stenciling, or anything that would let me make street art. I HEART street art for so many reasons. It divorces art from galleries and museums and positions it as something for everyone, regardless of economic class. It’s often political and provocative in a way mainstream media isn’t. And it adds another layer of complexity and interest to the city – I’ve noticed so many amazing things while I’m keeping an eye out for posters or graffiti and feel that helps me engage with the urban environment more actively. I’m a fervent reader of Wooster Collective and other street art blogs, but don’t create any myself.

OuyangDan asked “Do you think the moon is really made of cheese?” And I totally do! (I mean, not really, because that would mean the moon landing was a hoax and I cannot in any way be affiliated with that argument.) There is this totally delicious cheese called burrata, which is basically fresh mozzarella that when it was made into a ball had some cream or other creamy deliciousness inside it, and it tastes like clouds and light and perfection. And it comes in a pale creamy colored lump, exactly like the moon! I discovered this at a restaurant and was amazed that there’s a factory in an industrial warehouse district of a nearby city that makes it by hand and supplies most of the United States with burrata – so of course I had to visit it and buy it direct from the source on another adventure.

Feel free to ask any questions – I reserve the right to not reply or to reply via private email if they’re things I consider personal or private. You can also find me at my tumblr blog, think on this, or on twitter at @abbyjean (entries are protected so you’ll have to ask me for permission).

This is something I avoid thinking about

feminism, gender, life changes, social attitudes

As a single lady with a disability, I have lots of complicated and tangled thoughts about romantic relationships. While there’s a lot to say there (my therapist can attest to that), it all boils down to my belief about myself (which I want to make very clear is how I think about me, not something I think applies to any other person with a disability in the entire world ever) that my disability makes me too much of a handful, too much work, too much effort, too much pain in the ass, to be worth loving.

This is of course demonstrably untrue – I have friends and family who love me dearly and demonstrate that daily. I have been in romantic relationships in the past as a person with a disability, relationships that ended for reasons not at all related to my disability.  And so most of the time, this fear is a tiny tiny voice in the far back of my head that only comes out when things get especially dark.

But then there are actual studies like this: Men Leave: Separation And Divorce Far More Common When The Wife Is The Patient. Some findings:

A woman is six times more likely to be separated or divorced soon after a diagnosis of cancer or multiple sclerosis than if a man in the relationship is the patient. Researchers were surprised by the difference in separation and divorce rates by gender. The rate when the woman was the patient was 20.8 percent compared to 2.9 percent when the man was the patient. “Female gender was the strongest predictor of separation or divorce in each of the patient groups we studied,” said Marc Chamberlain, M.D., a co-corresponding author and director of the neuro-oncology program at the Seattle Cancer Care Alliance (SCCA).

The study was relatively limited – it examined only patients diagnosed with either multiple sclerosis or significant brain tumors. And it did find that longer marriages were much less likely to result in separation or divorce. But overall, I found this pretty disheartening.

Why are they so angry at her?

blaming, bodies, media and pop culture, television

Last week, Oprah did a segment on her show following up with Charla Nash, the woman who was viciously attacked by her friend’s pet chimpanzee in February 2009. The attack left Nash with significant and pervasive injuries to her hands and head, especially her face. After significant treatment and reconstruction, both her eyes were removed, she has only one thumb and no other fingers on either hand, and eats by taking liquids through a straw.

I did not watch the show – my feelings about all this are the press coverage is only to get a shot of her reconstructed face and show pictures of the “freak,” and I didn’t want to be a part of it – but I heard lots of reactions to the show in the media, on blogs, on twitter.

The primary reaction seemed to be anger. So many people said “if I lost my sight and my hands and my face looked like that, I would rather be dead.” And Nash is very clear that she would not rather be dead. She spends lots of time with her 17 year old daughter. From the Oprah site: “When Briana visits her mother, Charla says they just enjoy being together. ‘We lay next to each other and we hold each other and we talk about things—what she does at school or with her friends.'” She continues to push herself to recover, walking every day whether or not she feels good.

The reactions I heard would touch on her time with her daughter, her efforts to continue to heal, and dismiss them entirely. “You know, I love my kids and I’d want to see them grow up, but even still, I’d just rather be dead.” Despite being presented with the woman herself saying she was happy to be alive and happy to have survived, they ignored her, imposing their own ableist assumptions about living as a person with a disability and how awful they thought that would be.

They were angry at her for wanting to live, because it contradicted their thoughts about whether a person with a disability could live a fulfilling and happy life. They were angry at her even in the same breath as bemoaning how awful the attack was, how unfortunate for her that the injuries were so extensive. They were angry at her for thinking she was the same person, thinking she had a right to continue existing, for not giving up and going away to die.

I’m sorry that Charla Nash has to be the subject of this “freak” show. I’m sorry that she has to be the recipient of this anger. But I also want to put her face, put her story, on billboards nationwide, to say “fuck you” to everyone who wants her to go away and disappear.

Quoted: Paulo Freire

activism, disability activism, justice, Quotations

I find this quote helpful when I’m feeling worn down and need a little inspiration and motivation to keep fighting.

“Washing one’s hands of the conflict between the powerful and the powerless means to side with the powerful, not to be neutral. ”

– Paulo Freire, “Pedagogy of freedom: ethics, democracy, and civic courage” (1998).

The only way to not advance the agenda of the powerful is to fight it. (ht ohfortheloveofdog)

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.

A Patient’s Guide to Lithium

accessibility, medical practice, mental health

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.

Fort Hood Shootings

mental health, military, violence

As you may have heard, this afternoon at Fort Hood in Texas, a shooter killed 12 and wounded 31 people. The shooter, Army Maj. Nidal Malik Hasan, was killed during the incident.

While this is not a breaking news blog, my initial reaction was fear that the shooter had or could be construed to have had a mental disability that would be seen as the basis of the attack. And because emotions run high after this kind of disaster and people feel protective, there can be some nasty and hurtful rhetoric flying around. (I have already seen some vile and awful things said about his potential Muslim heritage. Needless to say, none of that will be tolerated in comments.) We wanted to create this as an open thread, safe space kind of area to discuss any concerns or thoughts raised by this incident.

Here’s a few resources I’ve seen, more will undoubtedly develop as the story progresses:

  • If you are concerned about specific individuals in the area, check the Red Cross Safe and Well List for more information.
  • Local blood donations are being accepted at Scott and White Memorial Hospital, 2401 S 31st St, Temple, TX?. They will be open until 10pm local time today and re-open at 8am tomorrow. ETA: The hospital has closed to donations for the day due to overwhelming response – please try them again tomorrow.
  • To find other locations to give blood, check the Red Cross website. Even if you live nowhere near Texas, consider donating blood (if it is healthy for you to do so) to prepare for future disasters.

Our warm thoughts and hope for speedy recovery go out to those affected by the shooting and their friends and families.

Mental Health Coverage Makes Economic Sense

accessibility, class issues, justice, medical practice, mental health

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.