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Why Do I Care What the Families Think?

I have a longstanding problem with reading any comment threads on posts discussing whether people with mental disabilities should be “allowed” to decide what medication and treatment they want, if they want any at all. The threads usually have one or two comments agreeing with the post, and then quickly devolve into stories from people who knew a mentally ill person once and how disturbing or upsetting or unpleasant it was for them when the person wasn’t on medication. And that pisses me off, because the person who should be centered and prioritized in that discussion is the actual person who is taking the meds, not the people around them.

Don’t get me wrong, I understand that some people with mental disabilities who are not taking medication are unpleasant to be around. I don’t believe that they’re more likely to be dangerous or violent as a general whole, there of course will be people who are, but that’s the tiny minority. I do recognize that some may be verbally or emotionally abusive to their friends and family. I agree that nobody should be forced to endure abuse of any kind, even if it is caused by the abuser’s mental disability. BUT. The fact that some people may be abusive without medication is nowhere near good enough reason to take away any person’s right to determine their own course of treatment. If an individual person becomes abusive or violent or dangerous, that’s a different situation that should be addressed for that individual person. But a blanket decision that everyone with a mental disability must take medication is an overbroad reaction to a relatively infrequent problem that is a huge infringement on the rights and dignity of the person with the mental disability.

So I really hate seeing the families of the person with a disability, rather than the person themselves, centered in discussions about what should happen to or for the person. Given that, I bet you can imagine my reaction when I saw this headline in the New York Times:

For Families of Mentally Ill, Mixed Feelings Over Push Away From Adult Homes

Joe Newell, a police property clerk on Staten Island, would love for his brother, John, to get out of the Coney Island adult home where his television set and other property have mysteriously disappeared. But Mr. Newell remembers how the last time his brother lived on his own, he stopped taking his epilepsy medication and slipped on the ice, slicing open his nose.

Donald Navard, 71, a retired bartender, wants something better than a threadbare life of bedbugs and institutional food for his niece, Dorothy. But he still remembers how she ran away from her last apartment after a week.

And Florence Weil, a longtime activist for the mentally ill, had high hopes for her daughter, Marci Reller, when she was placed in a small group home last summer. Seven days later, Ms. Reller ran away from the home and drank a fatal cocktail of furniture polish and heart pills.

I don’t really want to get into a discussion of whether this is the best outcome for the individuals with disabilities, because I don’t think we have enough information to make that decision. And we don’t have enough information because the article focuses only on the reactions of family members (who clearly are upset about the conditions in the group homes as well). There’s a single quote from a person with a disability, even though, according to the article itself, “Unlike some patients in psychiatric hospitals, residents of adult homes are not considered dangerous to themselves or others. They are generally legally independent adults in charge of their own affairs.”

I’m glad that the families are involved in the lives of the people with disabilities and care for them. I know the help and love of my family and friends were and continue to be essential for me in living with my disability. But I am much more interested in what the people who were living in those homes and now will not be think about the whole situation than their families.

By 13 October, 2009.    autonomy, mental health   



Ableist Word Profile: Hysterical

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

Today’s word: hysterical. There are a lot of different contemporary definitions of the word (Merriam-Webster, Cambridge, Encarta), but the theme among all of them is emotions that are extreme and unmanageable. A movie described as hysterically funny is likely funnier than most and may cause you to laugh uncontrollably and snort soda out your nose. Someone at a funeral who is crying loudly and who cannot seem to stop crying would likely be described as crying hysterically. But while your mental picture of the movie-goer laughing hysterically could have been either a man or a woman, the person hysterical with grief or worry is much more likely to be a woman than a man. That’s no accident – the history of this term is very gendered.

The word itself is derived from the Latin word hystericus, meaning “of the womb,” and from the Greek word hysterikos, meaning “of the womb, suffering in the womb,” from the Greek word hystera, meaning “womb.” And they understood the uterus to be the direct cause of hysteria. As Hannah S. Decker writes, “Various ancient Greek philosophers and physicians, including Plato, had argued that the uterus is an independent entity within a woman’s body… these thinkers concluded that the uterus had an ardent desire to create children. If the womb remained empty for long after the owner’s puberty, it became unhappy and angry and began to travel through the body. In its wanderings it pressed against various bodily organs, creating “hysterical” — that is, uterus-related — symptoms.”

So when someone on a blog tells me to chill out because it sounds like I’m hysterical about an issue,  the etymological meaning is that my failure to put a baby in my uterus (which has independent will and agency inside my body) has caused it to become angry, loose itself from its mooring, and start floating around inside of my body until it bangs into my brain and starts making me unreasonably upset.

There’s also a strong historical tradition of labeling women as “hysterical” in order to silence, marginalize, or even kill them. During the Roman Catholic inquisitions, thousands of European women were tortured and burnt as witches because they were thought to show signs of hysteria. But it was during the Nineteenth Century that things really got going. Some doctors considered the force of the uterus so powerful that it might overcome the brain and cause a woman to have pathological sexual feelings, “requiring” the physicians to “medically manipulate” the genitals in order to release the woman from control of her uterus. Yes, you read that right, the doctors were obligated to fondle their patients sexually for their own medical good. Conveniently, both mental or emotional distress and any physical symptom could be an indication of a woman’s hysteria, so doctors could diagnose literally any woman as hysterical.

Once hysterical women were no longer burned at the stake, the most common treatment was to send them to bed or to an asylum to prevent any activity or thought that would inflame their hysteria. This was an extremely effective way to marginalize or silence women, as any protest that she was not hysterical would be seen as conclusive proof that the diagnosis of hysteria had been correct. This meant, practically, that any woman categorized as hysterical was forever silenced and lost all credibility.

That’s a whole big mess of etymology and history, so let’s unpack that a bit. When I am told I am hysterical, there is both 1) the implication that I am excessively or unreasonably emotional AND 2) the implication that my condition is unique to my femaleness. It’s also 3) implied that hysterical statements (or even statements from hysterical people) should be discounted and hysterical people need to change in order to participate in the discussion, or should be removed from it entirely. Now let’s look at each one of those individually.

The first is a criticism of and dismissal of my personal emotions based on the observer’s judgment on whether they conform to what “normal” or “reasonable” emotions would be for that situation. The idea of “extremeness” is built into every definition of the word, implying that there is an assumed agreed-upon “normal” range for emotions. In the past, that likely meant “emotions acceptable to white men with money.” Currently, though, the idea is strikingly parallel to current definitions of mental disabilities and mental health diagnoses in the DSM-IV, which require that a specific set of symptoms “must cause significant impairment in social, occupational, or other areas of functioning” in order for a person to meet diagnostic criteria. This means that thee idea of emotions that are outside the “normal” range of experience to the degree that they affect a person’s function is the very definition of mental illness. So the accusation of “hysteria,” with the implication that the hysterical person has abnormally extreme emotions, is very clearly an accusation of mental illness. And remember part 3 — the conclusion that a hysterical person (or a person with a mental disability, by equivalency) should be discounted in discussions because of their hysteria/disability. THAT IS ABLEIST.

But that’s not all. The other implication of the term is that this over-emotional condition is a uniquely female condition and is caused directly by female reproductive organs being sad about not having a baby. While that’s not literally how it’s meant today, it still feels like a slightly nicer way of saying “you’re just upset because it’s that time of the month,” another way to marginalize and dismiss females based explicitly on their femaleness. It’s a way to say “that sounds like something a woman would say when she’s being super woman-y and influenced by being a woman.” And again, this is assumed to be a reason to discount the information or perspective offered and to exclude that person from the conversation. THAT IS SEXIST.

And here’s where the intersectionality comes in. Hysterical is a handy dandy insta-dismissal that slams two marginalized groups at the same time – and it only works because to be related to either group is considered to make you lesser. It also means that this word, with its invocation of both ableism and sexism, is particularly sharp when aimed at women with disabilities. That’s why arguments like “It’s sexist because it makes all women sound like crazies! Who’d want to be a crazy!” are extremely problematic – not only does the word rely on both sexism and ableism, it relies on the interaction between those two axes of oppression to be a super strong word.

If we thought of people with mental disabilities as full equals, with valid feelings, thoughts and perspectives that deserved respect, then the message “you are talking like a person with a mental disability because you are a woman” would be a compliment. The message would be “you are presenting a perspective or idea that deserves respectful consideration.”

If we thought of women as full equals, with valid feelings, thoughts, and perspectives that deserved respect, then the message “you are responding with extreme emotion because you are a woman” would imply that the emotion was valid and important and deserved respectful consideration. It would likely mean that whatever idea or perspective presented with that emotion would be given more credit and consideration, not less.

It only works as an insult, as a way to dismiss and marginalize, because both groups are considered lesser. And this is a great example of why intersectionality is so important – the kyriarchy uses other marginalized groups to attack us. As we support each other and all grow stronger, the kyriarchy will be less able to use these groups against us.

Note: I use the word hysterical in some contexts (‘I was hoping Zombieland would be as hysterical as Shaun of the Dead but it totally wasn’t.’) — I think these concerns are primarily relevant when using the word to characterize an individual’s argument, ideas, emotions, or perspective. I’d be interested in learning if others find it problematic in those contexts.

Mental Health Services and the Welfare System

The United States cash aid welfare system underwent a major overhaul in 1995, when Congress and Clinton famously “ended welfare as we know it.” There were a whole lot of important changes made to the system then, but the most significant was the imposition of 5 year lifetime limits on welfare receipt. Under the previous system, people could receive welfare as long as they were eligible by having a child under 18 and being economically eligible. Now, even if a person has minor children as is poor enough to qualify for welfare, if that person has already received 60 months of aid, she cannot receive any more. (I use female pronouns when referring to people who are on welfare because the caseload is predominantly female, but men do receive it also.)

Even the federal government realized that if we were going to cut people off at the end of 5 years, we had to offer them some tools to move towards economic self-sufficiency and to remove any existing barriers, such as mental health problems, substance abuse issues, or domestic violence.  So, in theory, a person can use her 60 months of aid to receive treatment, medication, and therapy for a mental health problem so she is more able to work when her time limits kick in and her case aid is cut off. In theory, the group of people who are very poor and have disabilities so severe that they cannot engage in work activity are not in the welfare population because they are already on the Supplemental Security Income (SSI) program through the Social Security Administration, so welfare administrators assume that everyone on welfare will eventually be able to work and support themselves once the “barrier” has been removed.

To be clear, the concept and terminology of “barrier removal” is the welfare program’s and not mine. I don’t find it a particularly helpful or accurate framework. I do not think that a mental health problem is something like a brick wall standing between me and the workplace and if I could just dismantle the wall, I could go right into work without any problems. I think it’s unproductive to frame it as a temporary condition that can be permanently eradicated, rather than a life long disability that can be managed to various extents but will continue to need attention, treatment, and management over time. I also think framing it like this gives the welfare system tacit permission to blame people who have undergone treatment while on welfare but who are not economically self-sufficient at the end of the 5 years, whether that be because their ongoing mental health issues need ongoing management, the failure of workplaces to provide meaningful accommodations, or even the lack of jobs that provide living income wages.

Even presuming the framework in which the welfare system thinks about mental health care were a meaningful one, their administration and implementation of that framework is … problematic. To phrase it generously. I’ll primarily focus on the Los Angeles County implementation, as that’s what I’m most familiar with, but problems like this exist to some degree in most welfare programs. Keep in mind that California is considered to be very generous with our welfare benefits and progressive in our “barrier removal” methods, so this may be the best case scenario.

For this discussion, I’m also assuming that participation in the mental health system is a good and beneficial thing, which is also far from a foregone conclusion, especially given the language and cultural diversity present in the welfare population and the, um, lack of such diversity in the mental health providers. (For example, good luck finding a therapist who can talk to you in Khmer! And good luck benefiting from therapy that has to go through a translator!)

The welfare system aims to identify people would would benefit from mental health treatment and connect them with providers. And right there is where there’s a major breakdown in the system. How do we identify people who would benefit from treatment? The welfare system relies primarily on what they call “self-identification,” where a person meeting with her caseworker would be asked if she has any mental illnesses. If she discloses, she will be routed into mental health services. If not, she would not.

Obviously, self-identification is a very problematic method. First, there are significant barriers that would prevent a woman from disclosing an existing mental illness to a welfare caseworker. Among those barriers: fear that disclosure will result in a referral to child services and could result in the children being taken from the home; fear that disclosure will result in involuntary treatment and/or institutionalization and/or medication; fear that disclosing will result in losing welfare and/or food stamp and/or Medicaid benefits; fear that any personal information disclosed to a caseworker will lead to discrimination, etc. And those are just the fears specific to the welfare context – there’s also general stigma issues and everything else that makes it difficult for anyone to disclose a mental health issue, even if they’re not financially dependent on the person to whom they’re disclosing.

And that long list of problems only applies to the people who already know that what they are experiencing is considered a mental health issue, usually people who have already had some access to the mental health system and gotten a previous diagnosis. If I don’t know that the anxiety and panic I sometimes feel culd be considered a panic attack, I’m not going to disclose anything. If I don’t realize that the depression and hopelessness I feel is not how everyone feels and might be related to a mental health issue rather than my abject poverty, I’m not going to disclose anything. The relationship between welfare recipients and caseworkers is notoriously fraught with mutual distrust, so I’m certainly not going to start discussing my symptoms with the worker, and even if I did, a caseworker with no mental health training isn’t going to recognize my symptoms as a potential mental health problem.

I know very well what happens to people who have mental health issues who are unable or unwilling to self-identify to a caseworker — they’re required to comply with work requirements (in CA, 30 or 35 hours a week, it varies by state) and if they’re unable to comply because of untreated mental health problems, they’re sanctioned for failing to work and their cash grant is cut significantly. If they continue to be unable to comply, they will eventually be cut off the grant entirely and cash aid will go only to the minor children (again, in CA. In other states, the entire cash grant, including that for the kids, will be terminated.).

This doesn’t even deal with the problems with the mental health care that is offered to those identified as needing it, just illustrates how a significant number of people with mental health disabilities will not even make it that far and are likely to be penalized financially for their disability status. And in some cases, their children will be significantly penalized also – simply because the welfare system cannot figure out how to meaningfully identify and accommodate people with mental illness in the welfare system.

By 12 October, 2009.    class issues, intersectionality, mental health   



Transparency and Feedback

It is important to all of the contributors here at FWD that readers and commenters be able to provide feedback on the site . It’s also important to us that you can see the processes we use and know how we respond to that feedback and address it on the site. So even though we’re quite a new site, we’ve already received some valuable feedback which has caused us to make some immediate changes and wanted to share it with you in the interest of transparency.

When we announced the site going live this afternoon, we received some immediate feedback on the site’s blogroll and how it excluded an important perspective – that of women over 50. (I’m not identifying the person who provided this feedback publicly because I don’t know if they’d be comfortable with that – if they’d like to be identified, just let me know and I can swap it.) During the planning for this site, we had identified age as an important axis of diversity and made it our goal to include a range of perspectives on age and aging in our blogroll and our posts. We put together the blogroll fairly quickly and intended to continue to revise and supplement it as the site progressed.

HOWEVER – neither of those things were at all evident from the site or the blogroll, so the only way people could have known is with psychic powers. That is a failure of inclusion on our part, and we apologize for that. Many of us have experienced implicit exclusion from mainstream feminism sites on the basis of our disabilities, and sincerely regret causing that same feeling of exclusion to women over 50, bloggers exploring the issues of ageism, and anyone else who was offended or felt excluded. That was our bad, and it was bad.

Since then, we’ve been working on finding relevant sites that we can add to the blogroll and are planning to think and write more about the issues of age and how they intersect with both feminism and disability. Some of the site’s contributors are 40ish, but none are over 50 and I’m not aware that any of us focus specifically on issues of age, so that’s obviously an important perspective for us to seek out and make affirmative efforts to include on the site – not just saying “if you want to see it, write a guest post.” (Although of course if you want to write a guest post we’d love to have you!!)

This is not an appropriate time for me to talk about how ageism interacts with feminism and disability, because it’s obviously not an issue I have any business speaking on. But we will continue to be doing and research and reading and working to connect with older feminist disability bloggers to feature and include on the site.

This is what we hope the site can do – receive feedback, respond to it, and incorporate it into the site moving forward. While we certainly hope we won’t make too very many mistakes, it is inevitable that we will make some. Our committment to you is that when you raise them with us (and emailing is a great way to do it – either the author of a specific post or administrator [@] disabledfeminists [.] com for site-wide issues like this one), this is what we hope to do with feedback. If you take the time to identify an issue and highlight it for us, we owe you the respect of serious consideration of your feedback and a good faith effort to respond to it.

By 11 October, 2009.    administrivia, intersectionality   



How Do We Understand This Experience?

This the story of the first time I really understood the degree to which intersectionality was key to understanding and addressing mental health issues.

When I was first diagnosed and the subsequent years when we all tried to figure out what was really wrong with me and what medications would allow me to function without too many problems, I had a lot of problems with anxiety. Or hypomania, or mixed state, or whatever people want to call it. But back then I had absolute faith in the power of the DSM-IV, and the medical professionals for which my parents were paying big bucks, to analyze my illness, assign it to a category, and know exactly the protocol to treat me. So back then, I thought of the episodes I was experiencing as panic attacks.

They felt like sheer terror, like my heart was pounding so hard I could feel it through my whole body, like my hands were a blur of shaking, like my muscles were pulled tight beyond their limit. I couldn’t make myself breathe right, taking a short gasp each time my heart thudded. But it was even worse inside my head, where a giant storm raged and kept me from thinking even a full thought because I was so overwhelmed with the thunder of certain and unavoidable bad! harm! doom! destruction! And after ten or fifteen minutes, the storm seemed to pass, and I could take deeper breaths, but felt battered and sore. They were awful and I hated them and resented them for appearing out of nowhere. I was ashamed that I could be so affected by whatever it was that set one off, if that could even be identified. I felt like I had no power to affect them.

Years later, when I no longer carried a bottle of tranquilizers with me just in case I had an attack, I went to a week long training up in the mountains with people from all across California. We were all young professionals with lots of degrees and post-grad degrees from US institutions. One night, I sat with some of the other women at the edge of the forest, in the kind of pitch dark you don’t get very often in California, with all our lights. It was super quiet, with no cars around for miles, and you could hear rustling of animals in the trees. Frankly, it was a little scary, so we of course decided to tell ghost stories.

One of the women told us a story about a road near her house in rural California. She said there was a section of the road where a bad car accident had taken place in the past that when you drove through, you could feel it was haunted. She told us how people from the surrounding area would drive by it to try to see the ghosts. I’m a complete skeptic about anything remotely paranormal or extraterrestrial or psychic, so I wasn’t making much of the story, and neither were some of the other women. But the woman explained that while the people who came to the spot were silly and would never get anything out of it and were wasting their time, she said she was certain that there were ghosts there.

She told us that her grandmother was from one of the indigenous tribes of Mexico and had been considered a holy woman because she could be possessed by ghosts. Her grandmother would be possessed for short episodes, around ten to fifteen minutes, and during the possession she would breathe quickly and her muscles would shake and she felt overcome by fear and evil. And the woman had inherited some of this ability through her grandmother’s bloodline and had similar episodes sometimes. She described the possession in detail and it was if she was reading my psychiatrist’s notes on my experience of a panic attack. Exactly the same – it felt like we had experienced the same thing.

I still remember the feeling I got then, when I realized that what I called a panic attack and thought of as a mental health problem to be treated with medication, she experienced as a ghostly possession and thought of as a valuable ability and a tie to her grandmother. And that neither of those definitions or perspectives or frameworks was any more valid. It was like one of the optical illusions where suddenly what I’d been seeing as a vase was also two faces in profile. That there were two realities that had been co-existing this whole time and I’d just now noticed one of them was there.

I was, and am, still overwhelmed with the implications of that realization. How would a person with her framework interact with a mental health system with the DSM categories and staggering range of medications? What would happen if she described an episode of possession to a physician or psychiatrist? And what would the difference be if I could think of it as a valuable ability instead of a debilitating problem with my brain? Would I even want or get any treatment if that were my perspective? What if my culture valued me for this? How does she handle the prevalent skepticism to ghosts and such? So many things to consider.

And then there’s the remaining question: how many other realities are there? How many other perspectives are on this experience we’ve had? How else can I think about what I experience?

By 9 October, 2009.    intersectionality, mental health   



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