Category Archives: class issues

Judge Orders New York to Move Mentally Ill Out of Adult Homes

From the New York Times:

New York State must begin moving thousands of people with mental illness into their own apartments or small homes and out of large, institutional adult homes that keep them segregated from society, a federal judge ordered on Monday. The decision, by Judge Nicholas G. Garaufis of Federal District Court in Brooklyn, followed his ruling in September that the conditions at more than two dozen privately run adult homes in New York City violated the Americans With Disabilities Act by leaving approximately 4,300 mentally ill residents isolated in warehouselike conditions.

The remedial plan offered by Judge Garaufis, drawn from a proposal presented by advocates for the mentally ill that was backed by the Justice Department, calls on New York to develop at least 1,500 units of so-called supported housing a year for the next three years in New York City. That would give nearly all residents the opportunity to move out of adult homes.

The Americans with Disabilities Act gives PWDs the right to live in the least restrictive housing possible – in this case, moving from adult homes into independent supportive living units. This is a great development for those previously forced to live in the abusive conditions of the group homes.

This lawsuit was filed after a series of articles in the NY Times about the horrific and abusive conditions present in group homes for adults with mental disabilities. It is unclear whether these changes would have taken place had the newspaper not devoted the time and resources to their year-long investigation of these conditions and problems.

Shame and Blame with African-Americans and Mental Health: Let the Circle Be Unbroken

Recently, U.S. Surgeon General Dr. Regina Benjamin kicked off a national campaign to tackle mental health in the African-American community. Benjamin explained why a focus on African-Americans is needed: “Mental health problems are particularly widespread in the African-American community. In 2004, nearly 12 percent of African Americans ages 18-25 reported serious psychological distress in the past year. Overall, only one-third of Americans with a mental illness or a mental health problem receive care and the percentage of African Americans receiving services (nearly 7 percent) is half that of non-Hispanic whites.”

Programs focusing on addressing underrepresentation of minority groups in mental health care tend to focus on outreach to and education of the underrepresented group (while this post focuses on historical and structural barriers to African-American participation in the mental health system, these larger concepts are likely applicable to other racial and cultural minorities throughout the world.). The theory seems to be that if individuals knew that they might be experiencing mental health systems and understood how the mental health system could treat and benefit them, they’d start accessing it in droves. This kind of outreach and education is clearly an important part of increasing minority representation in mental health care, but the exclusive focus implies that the primary barriers are the attitudes of individuals who would change their minds if they just had more information. This ignores a lot of problems and lets a lot of bad actors off the hook for institutional barriers and exclusions. In the particular instance of African-American engagement in the mental health system, it is these long-standing oppressions and exclusions which are perhaps most to blame.

A primary issue is that African-Americans are more likely to be subject to a number of forces of oppression and discrimination which can increase trauma and vulnerability to mental health disorders. “Owing to a long history of oppression and the cumulative impact of economic hardship, African Americans are significantly overrepresented in the most vulnerable segments of the population. More African Americans than whites or members of other racial and ethnic minority groups are homeless, incarcerated, or are children in foster care or otherwise supervised by the child welfare system. Proportionally, 3.5 times as many African Americans as white Americans are homeless. African Americans are especially likely to be exposed to violence-related trauma, as were the large number of African American soldiers assigned to war zones in Vietnam. Exposure to trauma leads to increased vulnerability to mental disorders.”

To me, that does not suggest that the primary solution is increasing African-American representation in mental health treatment – it suggests that a primary solution would be to address the structural inequalities that are making African-Americans “significantly overrepresented in the most vulnerable segments of the population.” Maybe a program that focuses on homelessness in the African-American population. Maybe addressing the sentencing disparities for crimes involving cocaine and crack cocaine, and how that contributes to disproportionate and longer incarceration of African-Americans. Or how felony disenfranchisement prevents a staggering number of African-Americans (13% of black adult males!) from participating in our democratic political system. Without addressing these ongoing problems, a disproportionate number of African-Americans will continue to experience trauma and increased vulnerability to mental disorders.

A second and key issue is the long history of how the psychiatric profession has treated African-Americans in the United States. Diagnoses and treatments for African-Americans have long been rooted in the structural racism of slavery, with early diagnoses of “Negritude” and “Drapetomia” for slaves who fled their masters and recommended treatment of whipping as therapeutic intervention. In 1895, a Georgia psychiatrist popularized the idea that “structured lives led by slaves served as protective factors against insanity” and that slavery protected African-Americans from freedom that would literally make them insane. In the late 1800s and early 1900s, there were separate “colored” institutions for African-Americans, who received little if any treatment services and were subject to horrific tortures and sexual assaults.

A glance at the current mental health system makes it clear those historical problems have not been eradicated. African-Americans are much more likely to be diagnosed with schizophrenia than with affective (mood) disorders, even when displaying the exact symptoms of a white patient diagnosed with affective disorder. This is true even when the diagnosing clinicians included African-Americans well trained about the bias towards schizophrenia diagnoses. Studies suggest this is because clinicians apply entirely separate decision models when diagnosing African-American patients, likely drawing on stereotypes of paranoia and violence that aren’t actually associated either with African-Americans or people with schizophrenia.

There are also significant knowledge gaps in how psychoactive medications affect African-Americans. There is almost no research on ensuring adequate racial representation in psychopharmalogical research, nor on how to ensure that participating patients from various cultural and racial groups give informed consent. This lack of knowledge is affecting the effectiveness of treatment, as existing research shows that “a greater percentage of African Americans than whites metabolize some antidepressants and antipsychotic medications slowly and might be more sensitive than whites,” and can lead to faster responses and more severe side effects when African-Americans are treated with doses commonly used for whites. Despite this, clinicians in psychiatric emergency services commonly administer “both more and higher doses of oral and injectable antipsychotic medications to African Americans than to whites.”

To me, all of this suggests that the psychiatric profession hasn’t really figured out how to provide psychiatric treatment and care of the African-American population with the African-American individual’s best interests in mind. History speaks to using psychiatry to control, torture, sedate, and oppress African-Americans, even creating fictionalized diagnoses to help support the structures of slavery. Add to all of this the multiple barriers preventing access to mental health care even for those who enthusiastically wish to access it – lack of parity for mental health care, lack of health care coverage at all, societal sigma around mental health – and instead of wondering why there’s underrepresentation of African-Americans in the mental health system, I start wondering why there’s as many as there are.

Clearly, a solution focused only on outreach and education to individual African-Americans is doomed to be unsuccessful, because it overlooks the underlying structural issues making African-Americans particularly vulnerable to mental health problems and the historical reality of their exploitation by the mental health system. Even more troubling, though, is that when the access problem is framed as an issue of education to an individual, it allows the blame to be placed squarely on that individual – even if these other, more serious, structural barriers are ignored. That kind of blame is just another addition to the complex system of forces making African-Americans more vulnerable to mental disorders to begin with.

Newsflash: Poverty is Bad for Your Health

A recent study from Columbia University found that of all the health factors they measured, poverty had the greatest negative impact on health. The other factors they looked at included smoking, obesity, lack of health insurance, and binge drinking, all of which had a less significant impact on health outcomes than living in poverty. Poverty, defined as living below 200% of the United Stated Federal Poverty Level, was determined to take away 8.2 years of health, meaning poor people have 8.2 fewer years in which they are healthy than someone above 200% of the FPL (This is a standard measure of health burden, used by the WHO.) We should also be explicit that when we talk about poverty we talk about race – over 50% of black and Latino young adults live in poverty, compared to less than 30% of white young adults.

To which I respond, well, YES, clearly. But you would never know these things from the way we talk about health. Think about how many public health programs are focused directly on the spectre of obesity. There’s PE programs and school activity policies, public education campaigns (usually involving TV ads) to tell people to spend less time watching TV, there’s calorie labeling requirements and scolding people to go to their farmer’s markets and taxes on soda or foods with trans fat. Some of those policies may have worth, but their goal of eliminating TEH FAT ZOMG and thereby solving the health crisis is clearly misdirected. Even worse are the articles and attitudes engendered by this focus on obesity as a health issue, like this recent article in the LA Times, because they imply that a systemic issue like the health care problem can be resolved by individuals changing their lifestyles, rather than by systemic change on a much broader level.

The effect of poverty on health has been clearly documented. People who live in poverty are more likely to have asthma and diabetes. They’re way more likely to be exposed to parasites like toxocariasis, cysticercosis, and toxoplasmosis, which can have significant physical and neurological effects including seizures and developmental delays. They’re five times more likely to be exposed to lead paint as children. They’re twice as likely to have untreated cavities, which can lead to heart disease or infection and even death. This all means that from the beginning, even from birth, people living in poverty are more likely to develop or acquire a disability or chronic health condition.

It would seem, then, that addressing poverty in order to prevent those negative health outcomes would be a public health priority. But it really isn’t – poverty programs are rarely described as health programs. When a politician starts talking about welfare, they’re talking about cash payments to help parents raise their kids, to preserve and support families. They don’t talk about how assisting a family out of poverty will make that whole family healthier, and less in need of health care. And addressing the negative health effects of poverty – safely removing all the lead paint, preventing slum housing conditions like cockroach infestations and mold that contribute to asthma, get them some access to dental care – would have an enormously beneficial effect on hundreds of thousands of individuals and on the health care system as a whole. However, addressing the systemic effects of poverty isn’t nearly as easy as shaming “the fatties” and slapping some calorie numbers on menus.

This is especially galling because there is so much overlap between the community of PWDs and people in poverty. A recent study found that almost half of working-age adults who experience poverty for at least a 12-month period have one or more disabilities. People with disabilities account for a larger share of those experiencing poverty than people in all other minority, ethnic and racial groups combined and are even a larger group than single parents. Families with more than one member with a disability are even more likely to be living in poverty. There are two things going on here. First, people who live in poverty are more likely to be or become PWDs, partly because of the health factors discussed above. But also,  PWDs are more likely to live in poverty, partly because of the cost of health care.

All of this suggests that our conversations about health care need to include ideas about addressing poverty and that our work on poverty issues has special effects on health and disability. Hurrah for intersectionality!

What is the Real Goal of Fraud Investigations?

California is in the midst of a major budget crisis. The past year has seen immense and drastic cuts to social service budgets throughout the state, including elimination of all state funding ($16 million) to domestic violence shelters (which was later partially restored by legislative action) and near-total decimation of funds for AIDS testing and prevention programs to save $52 million. Even with those catastrophic cuts, the state is still in massive financial difficulty: “The state has a $6.6 billion shortfall in the current fiscal year ending June 30 and is looking at a $12.3 billion hole for the new budget year. There is $1 million in reserve.”

This means that any dollar currently being spent has been extensively reviewed and evaluated and a very conscious decision has been made to prioritize spending in that area. For example, the state is still willing to spend money for California counties to investigate potential fraud in the In-Home Supportive Services (IHSS) program. IHSS is an essential program for many of California’s low-income elderly people and people with disabilities. Through the program, individuals are allotted a certain number of hours of assistance with personal services including bathing and grooming, home services such as cleaning, cooking, and errands including buying groceries and picking up prescriptions. The theory of the program is that assisting people this way allows them to continue living independently in their communities rather than in a long-term care facility, which not only preserves independence and dignity for program recipients, but also is a huge cost-savings measure for the state. If program recipients were to move to long-term care facilities, their costs would almost certainly be paid for by the state’s Medicaid program. And look at the cost differential: “The average cost of a skilled nursing facility is $55,000 a year. The average cost of in-home services in California is $10,000.”

Despite the cost savings realized by this program (I’m beyond the point where I think a state will prioritize and fund a program simply because it’s something that PWDs need to maintain independence and dignity), there have been massive cuts to the benefits portions of IHSS. The hourly wage paid to the home health providers has steadily declined and is now at $8.60 an hour. Needless to say, these extremely low wages make it nearly impossible for a PWD with IHSS benefits to find a home care provider with any kind of training or experience. There have also been steady erosions to the group of individuals who will be eligible for IHSS, with criteria requiring a higher and higher level of disability or functional impairment in order to qualify for the program.

The only area of program funding that has increased is fraud detection, with a grant of $26.5 million to counties to engage in fraud detection. That’s the equivalent of approximately 3 million service hours at the current rate of pay. There are also new requirements in the program that must be met by both recipients and providers in order to receive services: all providers must go through a criminal background check process, including fingerprinting; all program applicants and recipients must be fingerprinted and must place a fingerprint signature on each timesheet submitted for payment. It also requires counties to conduct unannounced home visits.

In the abstract, some of this seems to make sense. We don’t want health providers with criminal backgrounds coming into the homes of vulnerable people and exploiting or harming them. Except that the majority of providers are actually family members or immediate relatives of the PWD and the fingerprints can take up to 9-12 months to be cleared by the state, causing huge delays for PWDs who need vital services and delays in bringing often essential income to low-income families. (Not to mention how low-income people of color are likely disproportionately targeted by law enforcement and subject to criminal penalties.) It also seems reasonable to ensure that scarce service dollars are actually going to people who need and deserve them, rather than people receiving them fraudulently. But there has been a lot of research on IHSS fraud in the past, and it simply does not seem to be very prevalent: an audit released last year (pdf link) found a fraud rate of only 1% in the program. A recent program in Sacramento turned up similarly low levels of program fraud: “The Sacramento County District Attorney, who received more than $3 million from the state for anti-fraud efforts, reported last week that after four months her office had uncovered a total of 19 cases of fraud out of more than 42,000 homecare clients in the County.” That’s a rate of 0.04%. And if we estimate that each of those 19 cases fradulently took $10,000 a year from the state, that $190,000 in fraudulent benefits is dwarfed by the $3 million spent to identify that fraud.

So – these changes and programs are not about protecting recipients. They’re not about preventing widespread rampant fraud. What are they about? Some testimony at a recent legislative hearing sheds some light:

Nancy Jo Riley of San Diego testified that she and her client were “randomly selected” for a fraud investigation last October as part of a new “anti-fraud” initiative by the state. According to Ms. Riley, the agent from the Department of Health Care Services (DCHS) first threatened in a phone call to cut off all IHSS unless she and her client met with him immediately. At the subsequent meeting, the investigator asked her and her client a long series of “humiliating” questions. He then said he could not understand why a person with a severe disability like his should be subject to a fraud investigation in the first place.  He also said that her client, whose hands are frozen in a fist-like position because of his disability, would “probably” be exempted from new fingerprint requirements for homecare consumers.

These rules are an effort to make it harder for people to get services or to continue receiving services. They are an effort to erect barriers to service so substantial that PWDs cannot surmount them. They designed to humiliate and shame recipients for their disability status, to force them to prove themselves, their disabilities, and their functional impairments over and over again. They don’t even make sense from a cost perspective, as they spend far more in detection than is saved by the fraud they ostensibly prevent. They’re not targeting people who are fraudulently receiving services. They are targeting the very people the program is supposed to help.


As you’re likely aware, an immensely destructive earthquake struck Haiti on January 12, 2010. It was centered in the capital city Port-au-Prince, home to over 2 million residents, and destroyed buildings, food and water systems, hospitals, and seemingly the national government. The information and photos coming out of the country have been disturbing and heartbreaking. The full scope of the damage – to the people, to the country – has yet to be determined, but it is surely catastrophic.

The effect of the disaster on Haitians with disabilities is similarly devastating. Although the earthquake and subsequent building collapses happened so quickly that neither PWD nor TAB had an opportunity to get to safety, conditions after the quake are likely disproportionately difficult for PWDs. The streets are covered in debris and destruction, there is no electricity, and people need to scavenge for any available food and water. Additionally, literally all of the medical facilities in the city were destroyed in the quake, so there is no access to medications, doctors, anything. Even now, four days after the quake, there is extremely limited emergency care in Port-au-Prince, with people traveling 6 hours by car to one of the few undamaged hospitals in the country for emergency surgery.

In addition, there are an untold number of people who are newly disabled due to the catastrophe and its aftermath. Most of the injuries are open compound fractures, where broken bones have penetrated the skin. These require immediate surgery to re-set the bone and close the wound to prevent infection – which injured patients haven’t been able to get. These people haven’t gotten food and water, much less antibiotics.

Dr. Jennifer Ashton reported that “most of these patients have not eaten in three days. They are profoundly dehydrated and they have crush injuries to their long limbs, upper arms, body and, in some cases, open pelvic fractures, which set the scene for some very serious and life-threatening infection. In addition, when limbs get crushed like that, if they don’t have surgical management immediately, they risk losing that limb as the swelling and infection really take off and that’s what we’re seeing.” Ann Curry reported that desperate doctors were performing surgery on injured children without anesthetics. It is also likely that a number of survivors will develop Post Traumatic Stress Disorder. After the tsunami of 2004, PTSD rates averaged about 10% in the population.

It’s important to note that not everyone injured in the quake is subject to these conditions. American citizens were evacuated by U.S. Air Force planes and other chartered planes to be treated in United States hospitals. This Anchorage woman had her lower right leg crushed by rubble and was then evacuated to a hospital in Miami, where her foot was amputated. These conditions are affecting people without the money or resources to get adequate care. And they are exacerbated by the poverty and unstable infrastructure that existed prior to the quake. (Which the U.S. and France and other colonial powers created and sustained, but that’s more than I can get into with this post.)

It is easy to feel overwhelmed by this, but there are things you can do to help:


  • Portlight Strategies, Inc. focuses on Haitians with disabilities. It works with a community of Catholic nuns who will be opening shelters in Port-au-Prince for PWDs, and donated funds will go to “defray shipping costs of medical and clinical equipment … and for the purchase of food and other shelter supplies.”
  • Healing Hands for Haiti has been providing prosthetic and orthodic services and supplies to Haitians with disabilities since 1998 and will be deploying staff and equipment to help PWDs.
  • Christian Blind Mission, an organization focused on PWDs in the developing world, partners with local organizations in a number of medical facilities throughout Haiti. Donations will “support its Partners in the affected area with emergency assistance and long-term rehabilitation and reconstruction efforts.”


  • Aid for AIDS is collecting medical supplies, including unused medications. They are especially interested in antiretrovirals to help Haitians with AIDS whose treatment has been interrupted by the disaster. There are drop-off points throughout the US, or you can send them to Aid for AIDS at 120 Wall Street, 26 Floor
    New York, N.Y. 10005.
  • Partners in Health is also seeking donations of these specific items: “need specific items urgently:  orthopedic supplies, surgical consumables (sutures, bandages, non-powdered sterile gloves, syringes, etc), blankets, tents, satellite phones with minutes, and large unopened boxes of medications. No small quantities or unused personal medications will be accepted.

Please also remember to take care of yourself during this time. It’s been easy for me to spend hours reading articles, looking at photos, watching footage, and feeling increasingly overwhelmed and helpless. Don’t lose track of your own health and well being.

Less Than / More Than – My complicated thoughts on reproductive rights & feminist discussions

When I’m not being a student, I typically get temp jobs working in a variety of offices. Once things get settled, and folks realise I am married, they often start asking about kids. “Do you have kids? No? When are you having kids? It’s not too late, you know!”

This may seem like an opening for a post about being child-free, but it’s not.

I often put these questions off with flippancy or a shrug or just saying we’re not interested in having kids. In my experience, this will often have people leave the issue be.

Sometimes, though, people will hound and hound and hound.

“Oh, it’s different when they’re yours. But what about Don, what does he think of all of this? What about your parents? What about– what about– what about?” [1. Everything in quotation marks in this post is a paraphrase.]

Do you want to know the secret way of getting people to never again ask why you’re not having children?

At some point, drop into a conversation that your husband’s disability is genetic.

Without fail, that has stopped every single person who has asked and asked and asked about children, even when the “genetic” bomb isn’t dropped in a conversation about having children.

One of the reasons why the focus of abortion! abortion! abortion! whenever talking about reproductive rights really bothers me (and a lot of others) is because of the assumption that people like Don & I shouldn’t have children (because – oh no! – the child likely will have Marfan’s just like Don! And everyone knows people like Don are a burden on the system/have miserable lives/are never happy/can never be married/are all the same/should be stopped/are just an example for the rest of us). When people focus on reproductive rights only involving abortion, they neglect that, for people like us, the pushback is to not have children. Don’t burden the system. Think of the children – and don’t have any.

I’ve seen similar conversations play out around the feminist blogosphere. [1. I have decided not to link to specific examples, because it’s a general attitude I’m talking about here. And also, who wants to start a blog-war? Not I, said the Anna.] When older women have children, there is always a sudden upswing in “BUT THE CHILD MIGHT HAVE A DISABILITY!” (Yes, the child might. And the child might fall out of a tree and land wrong. Or the child might grow up to be the next Stephen Harper and prorogue Canadian government. WHO KNOWS!) “Think of the children!”

The same fears are reflected when discussing women with disabilities having children (with bonus “but how will she care for the child?”), or when parents forcibly sterilize their disabled daughters.

This pains me, perhaps especially as someone who doesn’t want children. It pains many other women who, for a variety of reasons, are discouraged or outright prevented from having children they want. That, in North America, these women are overwhelmingly women of colour, lower class, disabled, queer – that they’re often women who have been institutionalised in some way, be it a “medical” institution or a “criminal” one – is not a coincidence.

In my experience, marginalized voices who speak out about this disparity between on-line feminist discussions of abortion and on-line feminist discussions from a broader reproductive justice framework [1. FREE Halifax: Feminists for Reproductive Justice & Equality. We meet every other Tuesday for teach-ins & movies about Reproductive Justice. Look for us on Facebook.] are often shouted down, or ignored. We’re told our issues are “special circumstances”, or “pet projects” or “in the minority” or “don’t apply to as many people” or … Well, basically everything feminists in general are told when they talk about issues that are “special circumstances” that don’t apply to enough people (read: men) to count.

Frankly, I end up not knowing where to go from here. Do we, who are limited on spoons or forks or energy or time, keep trying to push for more mainstream feminist discussion on these issues? Do we form our own spaces, our own groups, and have our own discussions? Do we write blog posts that seem to dwindle down, rather than lead us all into the future?

I don’t know. I know and respect people who have made each of those choices, and still others that I haven’t mentioned. But I don’t know what the right one is.

Maybe they all are.

Getting Through College with a Mental Disability

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

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

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

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

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

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

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

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

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

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

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

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

Mental Health Coverage Makes Economic Sense

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.

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

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

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

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

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

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

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

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

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

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

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

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

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


Being discriminated against or exploited because one is female may be painful and dehumanizing, but it may not necessarily be as painful, dehumanizing, or threatening as being without food or shelter, as starvation, as being deathly ill but unable to obtain medical care.

– bell hooks, Feminist Theory From Margin to Center