Category Archives: blaming
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.
According to the United State government, disability is “the inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment(s) which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.” Or, in non-regulatory terms, disability is when a physical or mental impairment will last at least a year and will make someone unable to work. The ability to work is right there in the definition. A person who cannot work is disabled. If that person can work, they are not disabled. Disability and employability are mutually exclusive states of being.
That definition comes from the Social Security Administration and is applied to people applying for disability benefits, basically a wage replacement program to compensate for the salary the person cannot earn – so the focus on employability makes some sense. But more and more, I see this framework for defining and evaluating disability applied outside the benefits context, in deciding if someone is “‘really’ disabled.” It’s also notable that these wage replacement programs are the most commonly known and discussed form of disability-based benefits – while I’m used to seeing articles about how to handle the Supplemental Security Insurance (SSI) program, I rarely see coverage of programs from the Department of Rehabilitations, which provides vocational training and support to PWDs. And the false equivalence of disability and unemployability is problematic for a lot of reasons.
- There are a whole lot of people with disabilities who are not employed due to problems with the economy and with employers who discriminate against PWDs when hiring or fail to sufficient accommodate PWDs while employed. Assuming that unemployment is due solely to a person’s disability status, rather than systemic stigma and discrimination, places the responsibility for finding and keeping a job solely on the shoulders of the PWD. This shifts focus entirely away from the employers who have ultimate power over whether an individual is going to have a job. Take a look at employment statistics for the federal government itself, where “the severely disabled represent 0.94 percent of the government’s workforce.” And despite those low numbers, the government has no problem telling people that unemployment is a disability issue.
- When disability is defined as an inability to work, that overlooks an enormous segment of people with disabilities. About 37% of PWDs in the United States are employed – 8,581,869 people. But their ability to work does not negate or erase their disabilities. Those disabilities continue to exist and implying they do not lets employers off the hook for acknowledging and accommodating those disabilities in the workplace. It is already easy for an employer to overlook an informal request for accommodation or demand overbroad access to private medical files to “prove” whether or not the requesting employee “actually” has a disability in response to an accommodation request. It’s impossible to say how many employed PWDs have successfully requested and received needed accommodations relative to those who have been too intimidated to ask or had employers unwilling to fulfill their legal obligation to provide accommodations. But I would venture to guess that it’s quite difficult and involves risk for the individual employee. The stereotype that people who can work are not disabled and do not “really” need or deserve accommodation only encourages this behavior.
- In our society, employability is often equated with worth and value on a fundamental level. In the current bad economy, lots of people have been losing their jobs, and half of them feel that being unemployed has changed their lives for the worse. Being unemployed is seen as shameful, humiliating, a sort of failure to grow up and develop into a “real person.” Obviously, having “disabled” be seen as a synonym for something with those negative connotations does a disservice to people in both groups.
(A slightly different version of this post appeared at this ain’t livin’ under the title “Yes, Actually, I Can Make An Informed Choice“.)
There’s an interesting trend I’ve been noticing more of late at feminist websites: The idea that certain women don’t know what’s good for them. These women need to be told in no uncertain words about how to take care of their bodies, how to live their lives, how to interact with medical professionals, how to make decisions about their medical care. And, by extension, how to handle their disabilities.
Who are these women? They tend to be women who do things which feminists disagree with. For example, women who opt to have large families are informed that they are endangering themselves with multiple pregnancies and they should stop. Likewise, women who are considered “bad sluts” within the good slut/bad slut dichotomy are informed that they’re doing it wrong. That they are incapable of caring for themselves. Women who opt to stay at home, to not go to college, are also informed that they are making bad choices. Women with disabilities are routinely informed that they don’t actually know their own bodies and that they are endangering themselves. Simply by daring to be disabled and proud!
I’ve seen supposedly feminist websites saying that women should be subjected to unnecessary medical procedures “to make sure that they get STI testing,” because apparently women wouldn’t get STI testing if they weren’t forced to come in for excessively administered pap smears. I’ve seen sites saying that women should get screenings which are not recommended because otherwise they won’t know to take care of themselves and won’t see a doctor in a timely fashion. I’ve seen sites arguing that women who have multiple children are “brainwashed” and “need counseling.”
As one might imagine, I find this extremely irritating. Because, here’s the thing. I think that everyone is capable of making informed choices. And when I make an informed choice, I do not need to demonstrate to anyone that I have satisfied their requirements of what an “informed choice” is, and I do not need to justify my choice, ever. If a woman decides that she wants to have 12 children and she’s making an informed choice to do that, and it is not my business to tell her that she is engaging in risky behaviour and she is brainwashed.
People are welcome to disagree with the choices I make, and to feel that they would not make those choices (but they can’t know my situation so they can’t speak to the issues specific to me which might have shaped my choice). But to tell me that my decisions are not valid because they do not meet someone’s definition of “how to take care of yourself” or “how to be a feminist” is extremely problematic. Please note that I do not view coerced and false “choices” as true choices, and I think there is a legitimate discussion to be had about the “choices” women are forced into. Not whether or not women who make those choices are “feminist enough,” but about the circumstances which force them into those choices. (See the difference there?)
I cannot help but find it intriguing that mainstream feminism is remarkably supportive of “choices” which fit in with the framework of things that it views as “feminist.” Using birth control, for example, is supported and regarded as an informed choice when in fact many birth control users are not well informed and are not making an informed decision. Choosing to only have one or two children is also viewed as a choice worth supporting, but apparently choosing to have more children than that isn’t a “valid” choice any more. Mainstream feminism has a checklist of “what’s feminist” and choices which fall outside that checklist “aren’t feminist” even though decisions do not occur in a vacuum, not even one of perfect feminism, and do happen on a highly individualized basis which means that one choice does not fit all.
This attitude is especially troubling when it comes to disability matters, because it reinforces the idea that other people know more about women’s bodies than they do, and that doctors can and should force procedures on their patients. That ladies don’t know what’s good for them, and therefore it’s up to other people to tell them what to do. That women with disabilities can’t possibly make informed choices because there’s no way they could possibly know more than a mainstream feminist who is providing a lecture about “what’s good for you.”
Try making an informed choice at your doctor’s office. Really. Try asking for more information so that you have a complete picture before you make a decision. And try informed refusal: “no, I do not want this test, it is not necessary.” “I don’t need an appointment right now.” “Given that I’m a virgin, a pap smear is not appropriate.” Informed refusal is met with “well, we have to do it.” Subtext: You silly woman, you don’t know what’s good for you.
This attitude, that certain people get to decide what is feminist and what is not, is a form of policing. There’s one way to take care of your body, and one way only, and you cannot deviate from it. Only certain things are feminist and everything else is antifeminist. If you do not “choose” the “feminist” choice you are a “bad feminist.” It all ties into prescriptive feminism and the idea that it is not only ok but obligatory to tell other women what to do when they are doing something which you disagree with.
For women with disabilities, this is extremely dangerous. Given that one of the core values of feminism is bodily autonomy, it is shocking and very upsetting to see feminists promoting denial of bodily autonomy for disabled women. The inherent conflict here seems lost upon many mainstream feminists, and when they are challenged on it, the pushback can sometimes be quite extreme.
Here’s the thing.
I can make an informed choice.
I can research a situation, I can weigh the pros and cons. I can think about the impact which various choices will have on me personally. I can think about what I need to do to meet my needs and to take care of myself. And, considering all of this information, I can make a decision about what I want to do and how I want to handle the situation. When it comes to medical care in particular, I think I know a little bit more about my situation and my body than other people, and I can in fact be trusted to do the right thing, for me. I can even, yes, consider the cultural context of my choices.
To tell me otherwise is to deny me agency. To tell me that a choice I am making is “antifeminist” or “not good for you” is to tell me that I am a foolish clueless person who should not be allowed to make choices for myself. Demanding that I justify my choices is invasive, rude, and inappropriate. I don’t demand to know why other people do or do not do something. I trust them to make their own decisions, based on their experience as unique individuals.
If people ask me for information or thoughts while they are making choices, I may offer it, although I try to structure it carefully to make it clear that I am not speaking for them or prescribing any course of action. But if my input has not been requested, I don’t give it.
It is not appropriate to tell women that they should undergo unnecessary, invasive, and sometimes harmful medical procedures “for their own good.” It is not appropriate to tell women that all bodies are the same and that therefore there’s only one way to take care of them. It is not appropriate to tell women that they cannot make informed, considered, thoughtful choices. It is not appropriate to tell women that there’s only one kind of feminism and only one way to be feminist. Or that a specific choice is always inherently antifeminist, no matter what.
I may choose a different thing for myself than you might choose for yourself. You might opt to respond to things differently than I do. But that does not mean that a woman’s personal decision about something like, say, cancer treatment is invalid. Or that she is “stupid” for not choosing what I would have done. Or that she’s “not feminist” because she did something I disagree with (or even that her individual choice is “antifeminist” because I don’t like it, even if I grudgingly recognize that she might be feminist despite that).
I can make an informed choice. You can make an informed choice. Can we trust each other to do that, and move on to more important things than policing each other?