All posts by abby jean

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.]

Quotations

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

New Blog: You Make Me Feel Less Alone

Samantha Schultz is the author of I Don’t Want to be Crazy, a free verse recounting of her struggles with her anxiety disorder. I haven’t personally read the book, but several of my friends speak highly of it and the Amazon reader reviews seem quite positive. (Although I would skip the School Library Report review, which commends Schultz for having “had the courage and wisdom to seek professional help.”)

After publishing the book, Schultz received a number of letters and emails and found that the most common sentiment was that the book had made people feel less alone in navigating their own mental illnesses. As she says, “I am honored to be your audience of one, but your story—like mine—has the power to help others.” In order to facilitate the sharing of stories and experiences from people who have a mental illness, she’s created a new blog, You Make Me Feel Less Alone,  for people to submit their stories and poems, which she will then post. There’s an option to have your submission posted anonymously as well.

As Schultz says on her blog, and as we clearly believe also, “Your words are powerful. Your words can help people.”

Why I Identify As Disabled

For a long time, I’ve struggled with whether or not to identify as ‘disabled’ (or as a ‘person with a disability.’) It’s only very recently that I’ve identified myself that way in my own thoughts, and even more recently that I’ve begun identifying that way publicly. (As in, my name listed as a contributor to this blog was pretty much my first public identification as a person with a disability.) Because I know a lot of other people who are unsure if they qualify as a person with a disability or are reluctant to identify as such, I thought it might be relevant to talk about some of my hesitations to identify this way and what finally convinced me that I do identify that way and why it was important to me to do so publicly.

My first reluctance came from what seems to be a very common concern – I did not think I was disabled ‘enough’ to identify as a person with a disability. At this point in my life, my disability is fairly well managed by medication and the approximately 900 million hours of therapy I’ve been through. My psychiatrist sees me once every 12 months to check on my blood levels and spend 10 minutes with me checking in, and other than that, I’m totally disengaged from the mental health care system. (Except for the pharmacy.) To everyone except those who know me extremely well, I pass as neurotypical. I work full time at a professional job. I live independently and manage my own household and finances. I often have days where the only thing relevant to my disability is the 30 seconds at night when I take my pills.  Surely I cannot be disabled!

But I realized that view erases the very real aspects of my disability that I continue to experience. The periods in my past when I was more severely impaired by my disability (including my hospitalization) still exist and are still a part of me, no matter how well managed my disability is now. And the cyclical nature of many mental health disabilities means that while I’m at a relative peak now, I could find myself in a deep trough at any time. And there are limitations involved even with the minimal treatment I’m receiving – I have to make sure I have a dose of meds with me in case I sleep at a friends’ one night, I have to deal with the punishing withdrawal symptoms when I forget to take a dose on evening, I have the dry mouth and the flaky skin and the lump of belly fat that are side effects of one of my meds. (And there’s my monthly tangle with the pharmacy refill system.)

More importantly, I know that if I tell anyone my diagnosis, if they find out about the hospitalization or the 900 million hours of therapy or the meds I’m taking now, I change in their eyes. It’s easier for them to dismiss my emotions as an artifact of my disorder and thus irrelevant. It’s easier for them to patronize me because they assume I’m not capable of taking care of myself. However I think of myself, I know they will think of me as a person with a disability. (Actually, I suspect many of them would think of me as a “crazy bitch.”)

I’ve also struggled with identifying as a person with a disability because of the split between mental and physical disabilities. Even when I began identifying as a person with a mental health disorder, I still didn’t think of that as being a person with a disability. I thought people with physical disabilities focused mainly on physical access issues, which weren’t at all relevant to me. I don’t need reserved parking spaces, I can walk up stairs, I don’t need a special restroom.

Then I realized how artificial the distinction is between mental and physical disabilities. When I have a panic attack, it affects me physically. When I am depressed, I have no energy and I can’t walk up stairs. I also realized the enormous overlap – lots of people have both mental and physical disabilities, and it’s common for the treatments for physical disabilities (like narcotic painkillers) to have cognitive effects. I also started talking to people with physical disabilities and heard them concerned with much more than physical access which, while very important, is not the sole focus.

All of that is not why I began identifying as a person with a disability, though. I thought of myself as an individual struggling with a very specific and individualized problem. I know other people with the same diagnosis as me, and all of us have had very different experiences and very different approaches to treatment. So I thought of myself as an exceptionally special snowflake that had some exceptionally special difficulties for me to go through, difficulties that nobody else had or would experience. So I thought about my mental health issues as they affected me personally, how they had changed my life, how they had made me the person I am today. But because they were so inherently unique, because nobody had gone through exactly what I’d gone through, I tended to think of my disorder not even in terms of my diagnosis, but in terms of “the very special snowflake disorder that only applies to me.”

Thinking of it that way meant that all the negative reactions I got, all the judgments I got, all the dismissals and marginalizations and refusals to take me seriously, all the hoops I had to jump through to get what other people had – they were just about me. Personally. They were not about how people responded to mental health problems, they were not about how people respond to and discriminate against people with disabilities as a group, they were about ME. I had brought them upon myself because of my disordered behavior, because my special snowflake-ness was so annoying or intolerable that people had no choice but to write me off.

Amandaw recently told me that she thought of disability as a political identity and I strongly agree. Thinking of myself as part of a group of people who routinely encountered oppression on the basis of their disabilities meant that the reactions I got, the disregard, the disgust thinly veiled as pity, the refusal to deal with my emotions and ideas – that wasn’t because of me. That was because I was part of a group subjected to systemic and institutionalized discrimination and oppression. And it was wrong. But it wasn’t until I started thinking of myself as part of that group and thinking about how these systems affected all of us that I needed a term for “people who are discriminated against or oppressed by our culture and institutions in the same way I am.” It wasn’t until I started thinking of it as a group issue, rather than an individual issue, that I needed a word for that group.

These systems that oppress us don’t care one whit about my special snowflake-ness. They don’t care about how well I’m doing now. These systems exclude and marginalize and dismiss and mock me based on my disability status without taking into account any of the individual variations in my life and my disability. And when I hear a caseworker explain that “you can always tell who is crazy because they live in cardboard boxes and tell people it’s a palace and they’re the king,” it feels like a slap in the face whether or not she knows I’m disabled. It’s about the systems, the institutionalized attitudes. It’s not about me.

Even after realizing all of this, I was still reluctant to identify publicly as a person with a disability. I would share details of my mental health history and the effects of my mental health conditions, but I still wouldn’t come out and identify myself as a person with a disability. At least, until I began talking and working with the amazing women who are my co-contributors on this blog. Because that’s when I realized that identifying publicly gave me power. Gave us power. Allowed us to come together as women who experience oppression and discrimination on the basis of our disabilities. Allowed us to work together to identify and address these problems, to find others affected in the same way, and to come together to try to change things. Thinking of myself as a super special snowflake made that kind of collaboration and support impossible, because nobody could be in my special snowflake group with me.

So while I’ll always think of myself as a pretty damn special snowflake, I also now think of myself as a woman with a disability. And identifying that way has allowed me access to power and support that I don’t think I could have found otherwise.

Note: I’m going to moderate this comment thread with a heavy hand to ensure that there is absolutely no policing of disability. If I self-identify as a person with a disability, I do not owe you the information of my diagnosis, my health history, or my therapy records to ‘prove’ that I am disabled. Similarly, I will respect how others self-identify if they are doing so in good faith and expect other commenters to do the same.

Focusing on College Students’ Mental Health (For the Benefit of the Neurotypical)

I live in Los Angeles and the local papers have been abuzz about the recent stabbing of a UCLA student by another student during science lab. Apparently a professor reported concerns about the alleged attacker’s mental health about 10 months ago. And so, according to the LA Times:

The recent arrest of a UCLA student in the brutal stabbing of a classmate in a campus chemistry lab has again focused attention on an issue that gripped the nation after the 2007 massacre at Virginia Tech: the mental health of troubled college students. The Virginia Tech shootings, which left 32 victims and the gunman dead, raised difficult questions about how a disturbed student could have been allowed to remain at the school despite danger signs. The Virginia Tech killings were followed last year by a deadly attack at Northern Illinois University, in which a former graduate student killed five students and himself.

So – to be clear – the focus on students’ mental health has the primary goal of identifying students who are at risk of violent attacks on other students and staff. And presumably treating or confining them. While protecting the safety of students and staff is unequivocally something that a school should be doing, characterizing that goal as “focusing on college students’ mental health” ignores violent crimes against staff or students committed by people without mental illness. It also does a vast disservice to the vast majority of students with mental illness who are at zero risk for committing premeditated violent crimes.

The US Department of Justice estimates that there are 34,000 violent crimes committed against college students on college campuses every year. Most of those were non-fatal, there were 20 on-campus murders in 2000 (there were about 1800 rapes in the same year). While it’s likely that some of those violent crimes were committed by a student with a mental disability, the vast majority of them were not. It’s certainly more likely that a college student who is a victim of violent crime is affected by one of these “garden variety” crimes than something like the incidents in the article – of which there have only been 3 since 2007.

Additionally, the message that focusing on mental health is solely to prevent these incidents marginalizes and harms college students with mental illness who aren’t ever going to kill or physically attack anybody, much less bring a gun to class and start shooting randomly. Those students are being told that people with mental illness are scary and dangerous and need to be found right away so they can be kept away from other students.

Many colleges now require a mental health assessment for a troubled student to stay enrolled and more readily expel those who refuse to comply, said Brian Van Brunt, president-elect of the American College Counseling Assn. who heads the counseling center at Western Kentucky University.

There are a whole lot of things wrong with this. First, it’s very unclear who will be subject to this kind of review – who counts as a “troubled student”? Once a student is required to undergo this review, they’re required to subject to a psych assessment and disclose past traumas, sexual assaults, all kinds of things to the college administration, at the threat of expulsion. And the implication is that if the college doesn’t like the outcome of the mental health assessment, the student might be expelled on the basis of their mental health status.

This gives students a huge incentive to stay quiet about their mental health concerns, to hide them. Going to student health for psych counseling might trigger a review by the administration to see if a student was too sick to be at school. Talking to an RA might result in a report to student services. Even fellow students might report you to be psychologically reviewed by the administration. And it’s not at all clear the colleges are that enthusiastic about keeping these students around:

Colleges try to retain students if they are not violent, said Keith Anderson, chairman of the American College Health Assn.’s best practices task force in mental health. “The goal is to keep them in school, keep them functioning and engaged, and in treatment at the same time,” said Anderson, who is a staff psychologist at Rensselaer Polytechnic Institute in Tory, N.Y

“Try to retain students if they are not violent” is a far cry from “affirmatively and eagerly addresses the mental health needs of students.” It sounds an awful lot like “will tolerate those students, I guess.” And that message is having an effect:

In a recent survey of campus health officials, the American College Counseling Assn. report noted “growing intolerance by faculty and others about students perceived to be odd.”

“Maybe if we shun the weirdos, they’ll leave before we have to expel them!” It’s clear that this focus on mental health is not at all for the benefit of those college students with mental illness – it will affirmatively interfere with their ability to get support and treatment. It will make things worse for them. So the only motivation for this increased focus on mental health is to protect the neurotypical from the violent attacks from individuals with mental illness, who are considered universally dangerous and deserving of suspicion. This new focus is for the comfort of the neurotypical, at the direct expense of students with mental illness.

This is Hard

I sat down this evening to find some stuff I could write a few posts about. I went to google news and did a search for “mental illness” and one for “bipolar disorder” and looked through everything that had come up in the past week.

There was a fair amount of stuff – some workers in the CA Department of Mental health are working enough overtime to double their salaries, continuing involvement in your field of work after retiring may help mental health, some news updates on the British guy scheduled for execution in China – so I just picked out a couple of stories to look at.  I was specifically looking for something that would be positive or at least neutral – something that wasn’t about people with mental disabilities being violent criminals, or about how pharmaceutical companies are making money.

So I picked an article that seemed positive: a piece by Glenn Close in the Huffington Post about ending stigma. It’s titled Mental Illness: the Stigma of Silence, and there’s a lot in it that’s great. She criticizes the movie Fatal Attraction (in which she starred) for portraying her character as a dangerous psychopath and misrepresenting the reality of mental illness. She points out how other “topics that were once unspeakable,” like breast cancer and AIDS, have gained wide acceptance and awareness, while there is largely silence on the issue of mental illness. She is frustrated by the societal assumption that people with mental disabilities are lost causes. She even calls out ableist language like “‘crazy,’ ‘nuts,’ or ‘psycho’.”

But. She opens the piece by saying that “mental illness and [she] are no strangers” – and then cites her “challenge — and the privilege — of playing characters who have deep psychological wounds” as the basis of her authority. She also mentions that her “sister suffers from a bipolar disorder and [her] nephew from schizoaffective disorder” (emphasis mine). Which … isn’t great and made me frown a bit. But I could have overlooked that – it’s an article with a lot of visibility that makes strong arguments against stigma, it’s connected to an organization “that strives to inspire people to start talking openly about mental illness, to break through the silence and fear [and has] the support of every major, American mental health organization and numerous others.”

Except then I clicked through to the website of the organization, Bring Change 2 Mind. And here is the first thing I saw: (screencap of a video, so excuse the graphics)

Bring Change 2 Mind

I literally gasped out loud. She is a mom, his mom. And he is not even her son, not even a person, not even a person with schizophrenia, not even a schizophrenic, he is labeled with his diagnosis. There’s other photos on the front page- someone with a “post traumatic stress disorder” shirt, and Glenn Close (wearing a “sister” shirt) sitting next to her sister, who is wearing a “bipolar shirt.” And I closed the window. Any kind of anti-stigma campaign that would involve me wearing a shirt saying “bipolar” on it is not a campaign I want to be a part of. More power to those who did choose to be involved, but it just feels wrong and isolating to me. Like that is the only relevant characteristic of the person with mental illness, while people without mental illness are defined in terms of families, relationships to other people.

And that’s why this (and by ‘this’ I mean being a person with a mental disability) is so hard – even those allies who genuinely want to end stigma and address ableism can do things that feel like a slap in the face. We are embedded in a culture so steeped in ableism with institutions providing a long term structure for discrimination and dismissal that it shows up everywhere you look – even when you’re intentionally looking for something good and supportive. So some days it seems easier not to pay attention to mental health issues at all, because around any corner could be something like this.

Disability, Gender, and Poverty

I came across a new study by the Center for Economic and Policy Research, a D.C. think tank, examining the relationship between disability and poverty (pdf).

I was very interested to read this because, while its not discussed in this study, poverty in the United States affects women at rates much higher than men. “The US Census, which uses a comparatively conservative absolute poverty measure, reported in the last decennial census that overall 17% of females, compared to 13% of males, age 18 to 64 living in the largest US cities, had incomes below the poverty threshold. Likewise, 36% of female headed families with children under age 18, compared to 21% of male headed families with children, in the largest 70 cities, had incomes below the poverty thresholds.” For this reason, I think issues of poverty in general affect more women than they do men. Studies have also found that “women are more likely to experience disability than men, particularly disabilities related to mental health,” so the population of people with disabilities living in poverty is likely to have significant numbers of women in it.

According to the study, disability is an enormous factor in poverty. “About half of all working-age adults who experience income poverty have a disability, and … almost two-thirds of all such adults experiencing long-term, income poverty have a disability.” This means that, although poverty is often thought of as an issue primarily affecting Latinos, African-Americans, and other minority ethnic and racial groups, “people with disabilities account for a larger share of those experiencing income poverty than people in any single minority or ethnic group — or, in fact, all minority ethnic and racial groups combined.”

The study gives more information on the prevalence of disability in the overall population, finding that about 18.7% of the non-institutionalized population (excluding group homes, jails, etc)  reported some level of disability. About two-thirds of those people had a disability that “seriously interfered with everyday activities, made it difficult to remain employed, or rendered the person unable to perform or in need of assistance with various functional activities.” Looking at working-age adults over a seven-year period, the study found that “about one in four working-age adults experienced a disability [during the 7 years], but only 10 percent of them were disabled during the entire period.” This supports the view of disability as a dynamic phenomenon that can result in increases and decreases in the severity of impairments over time.

The employment rates for people with disabilities in the United States are strikingly low. Among women age 16 to 64 (considered working-age), about 65.8% of women without disabilities are employed, compared to only 26.9% for women with disabilities. The study attributes this discrepancy to both “the considerably lower rate of labor force participation among people with disabilities and a higher rate of unemployment for people with disabilities in the labor force. This means that women with disabilities are less likely to try to work, but even those who want and are actively seeking work are less likely to find it than women without disabilities. (I should note that per the study, “a number of EU nations — including all Nordic nations –and Canada have higher levels of employment among people with disabilities than the United States.”)

These disability rates and low employment rates have a drastic effect on poverty for people with disabilities. Of those working-age adults who experience poverty for at least 12 months, about half have at least one disability. Of those who experience longer term poverty, defined as at least 36 months of poverty during a 48-month period, have one or more disabilities. This does not mean that having a disability causes a person to become poor, or that being poor causes a person to become disabled, but suggests that there is a strong relationship between the two. A person who is poor and cannot access meaningful health care is unlikely to receive the treatment, aids, and other assistance that would help her to manage her disabilities. A person who is disabled is, as shown above, likely to have difficulty finding or maintaining employment, causing income loss and pushing them towards poverty. Basically, the two conditions reinforce each other and make it more difficult for an individual to address either one.

But we’re not done – there’s an additional problem. The poverty estimates discussed above define poverty using the Federal Poverty Rate, a rate determined by the U.S. Government and adjusted each year. Currently, a single adult without children is considered “poor” only if she earns or otherwise receives less than $903 per month, $10,836 a year. If she has a kid, the family is considered poor only if they receive less than $1,214 a month or $14,568 a year. There are significant criticisms of the current rate, which is calculated primarily on the cost of food and doesn’t account for regional differences in housing costs. Another problem with the rate, though, is that it looks only at income coming into a household and not the necessary costs  – which would likely be higher for people with disabilities, who need medical care, assistants, mobility aids, or other costs to achieve the same level of functioning as a person without a disability.

This means that people with disabilities are “40% to 200% more likely to experience various material hardships than people without such disabilities … among persons living below the current poverty line, a person with a disability would require income of roughly two to three times the poverty line to have the same lower risk of experiencing most material hardships as a person without a disability.”

I read A LOT about poverty and its causes and how it can be addressed through policy solutions and why current policies aren’t working. But the idea of viewing poverty as a disability-related issue is a new one for me. The study explains that this is common, as “contemporary policy debate and research about income poverty in the United States is largely silent about disability… books and papers by leading income-poverty experts and researchers only rarely discuss disability, if at all.” The mention a recent set of papers presented by the Brookings Institute on “high-priority poverty strategies for the next decade” that briefly mentioned disability issues in passing, instead focusing largely on issues of marriage. This is another way the issue intersects with feminism – many contemporary poverty policies are aimed at encouraging poor women to marry or penalizing them for having children, policies based on stereotypes of “welfare queens” or poor women having extra babies in order to collect additional welfare money.

This study makes clear that poverty must be examined and understood through a lens of disability in order for us to create and implement policies that will adequately address the realities. People with disabilities are much more likely to experience poverty than people without disabilities, and the vast majority of people who experience long-term poverty have disabilities. People with disabilities are less able to obtain employment even if they are actively seeking it. And people with disabilities are likely to experience more significant material hardships (lack of shelter, food, etc) than people without disabilities even if both are equally poor according to the Federal Poverty Level.

There is a glimmer of hope in the study, though, showing that this is not an inherent or unavoidable situation for people with disabilities. In fact, the study found that “the U.S. is a notable outlier when it comes to poverty rates for disabilities. The U.S. has a higher income poverty rate for people with disabilities than any other nation in Western Europe as well as Australia and Canada. A handful of nations – again mostly Nordic – have eliminated the disparity in poverty rates between people with disabilities and those with no disabilities.”

So my plan is either to import Nordic social policies or just export myself to Scandinavia. See you in Reykjavík!

Ableist Word Profile: Retarded

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.

Let’s start by looking at various definitions of the word, so we know what we’re talking about. “Retard” can be used as a verb, when it means “to make slow; delay the development or progress of (an action, process, etc.); hinder or impede.” It can also be used as an adjective, when it means “characterized by retardation,” which in turns means “slowness or limitation in intellectual understanding and awareness, emotional development, academic progress, etc.” Finally, it can be used as a noun, when it means “a mentally retarded person.” The word is disparaging and problematic primarily when used as an adjective or noun, so I’m not concerned with people who say things like “embalming mummies was a method of retarding decomposition over time.” Similarly, I’m not concerned with phrases like “fire-retardant pajamas.” I am, though, significantly concerned with people who use the term as a noun or adjective meant to disparage and insult a person, idea, or argument.

Etymologically, the word traces back to Latin roots retardationem, and retardare, meaning “to make slow, delay, keep back, hinder.” It’s the same root as “tardy,” meaning late. This first recorded instance of using the word to mean mentally slow didn’t occur until 1895, and use of the word as a disparaging insult didn’t occur until much later, one source saying the 1960s, another citing a book from the late 1950s where a character discussing Playboy magazine said “that Hefner jazz is for retarded jockstraps.” In either event, it’s a relatively recent development that the word is used to attack and disparage others. Coincidentally (or is it?), it was around the 1950s or 60s that the American medical profession began referring to the psychological condition as ‘mental retardation.’ Before then, the condition had been termed ‘mental deficiency,’ ‘feeble mindedness,’ or simply ‘idiocy.’

In current psychiatric practice, the term “mental retardation” is a medical definition, outlined in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM). (Sorry I can’t link to this – am referring to my own copy. To my knowledge it’s not available in whole online.) The diagnosis requires an IQ score, but that is not the sole factor — it must be accompanied by significant limitations in adaptive functioning in the areas of communication, self-care, home living, social or interpersonal skills, self-direction, functional academic skills, work, leisure, health, and/or safety. Additionally, the onset must be before age 18. The DSM notes that individuals with mental retardation usually present with impairments in adaptive functioning – difficulty coping with the normal demands of life or meeting the standards of personal independence expected of someone in their particular age group and sociocultural background. An individual’s IQ score determines with which of the four subtypes of the disorder an individual will be diagnosed: mild (55-70), moderate (35-50), severe (20-35) and profound (below 20). About 85% of individuals diagnosed with the disorder are in the “mild” category. Importantly, the DSM notes that “no specific personality and behavioral features are uniquely associated with mental retardation.”

This medical definition is certainly not what’s intended in contemporary uses of the word. If I say “I saw Zombieland and it was totally retarded,” I am not saying that I think the movie had a low IQ and I observed significant limitations in adaptive functioning. (That doesn’t even make sense.) I am saying that I thought the movie was bad, uninteresting, boring, nonsensical, repetitive, and a waste of my time and money. But for me to mean any of those things by using the word “retarded,” I and the person to whom I’m speaking have to share the assumption that being retarded is bad and that people who have mental retardation are stupid, uninteresting, and a waste of my time. Similarly, if I say “LAPD Chief Bratton’s views on homeless policy are retarded,” I mean that they are poorly informed, poorly thought out, and will be ineffective. For me to mean that, the person to whom I’m speaking has to share the assumption that people with mental retardation are poorly informed, think poorly, and will be ineffective.

The term is used so broadly in contemporary conversation that usage is no longer based primarily on assumptions about specific behaviors of people who have mental retardation – just the general assumption that retardation is bad, something to be avoided, and things, ideas or people described as retarded should be excluded from the attention of non-retarded people. At this point, the connotation is simply “that’s bad and you should ignore it.” (See the Urban Dictionary entry for the term, which describes it as meaning “bad” in literally hundreds of different ways.) And that is ableist – using a word that not only describes but is the actual medical diagnosis of a mental disability to mean “bad and ignorable.” Using the term reinforces the implicit assumption that mental disabilities are bad and that people with mental disabilities should be excluded and ignored because of their disabilities. And that affects all people with mental disabilities, not just those diagnosed with mental retardation or another developmental disability. (Although it is especially difficult for family members of people with developmental disabilities.)

In the past year or so, I’ve been making an effort to eliminate this word from my vocabulary. And it’s hard. I hadn’t realized how common a word it is until I started paying attention to it, and then I saw it absolutely everywhere, and heard it come out of my own mouth. (I stop myself, apologize, and substitute another word.) There are movies like Tropic Thunder with whole plotlines about “going full retard.” Blogs use it with regularity. I guarantee that now that you’re aware of the word, you’ll notice it in more places than you ever imagined. You might want to consider reading more about or even supporting organizations trying to increase awareness of the word and encourage people and the media to find other words, such as The R Word Campaign and the My Words Matter Pledge.

Some alternative words: bad, awful, silly, poorly reasoned, dunder-headed, illogical, ineffective, inefficient, uninteresting, etc, etc.

More Research Like This, Please!

There is a neurochemical link between psychosis and creativity, according to psychiatrist Szabolcs Keri of Semmelweis University in Hungary. He studied neuregulin 1, a gene that typically is involved with neuron development and communication. A variant genotype, though, is associated with a great risk of developing mental disorders like schizophrenia and bipolar.

Keri studied a bunch of people who considered themselves creative and had them undergo assessments for intelligence and creativity. They also gave information on their lifetime creative achievements. Those who had the variant genotype of neuregulin 1 scored higher on the creativity assessment and had greater lifetime creative achievements. So, and wait for it, because this is exciting – a study has shown that a genotype associated with psychosis is also associated with traits and functions that people think are good and beneficial!

I don’t love the methodology of the study – measuring creativity is a difficult task in a scientific study, but I love the idea of somehow documenting something I believe about myself: my disability is not exclusively defined by diminished or impaired functioning, but also by abilities or skills beyond those of neurotypicals. I believe that we, in general, not just disability activists, should be thinking about and talking about and studying this perspective more.

(h/t Greysteppenwolf)

Rant: Your Logic is SO Faulty!

You have no grasp of logic! Your argument is invalid! – this is what I started yelling at my computer when I came across this story in my Google Reader:

Should parents be worried? A new parent survey indicates that the number of American children with autism has doubled since 2003, to 1 in 91. The National Survey of Children’s Health, which is largely based on unconfirmed information from parents on the health of 78,000 kids, is less official than the U.S. government study of six years ago, causing a debate over how many children actually suffer from autism. If the current figures are accurate, 1.1 percent of children have some kind of autistic disorder compared to 0.57 in 2003. Regardless of the exact numbers, researchers are concerned: “The study shows that the increase in autism is real—you can’t have a genetic epidemic—there are environmental factors in play,” said Rebecca Estepp, national media manager for Talk About Curing Autism (TACA). “This is a national health crisis. … I don’t know how it hasn’t been declared a national health emergency.” (beast)

First of all, lady, the name of your organization is offensive. (Also.)

Second of all, your assumption that the sole variable causing the increase in rate of autism diagnoses is an increase in the occurrence of autism is literally laughable – even more so when the number on which you’re relying on self reporting by parents. But it (rightly) doesn’t count as a diagnosis every time I self-diagnose something with the help of Dr. Web, MD. The self reporting wasn’t confirmed with medical records, not that records would resolve the issue. Pinning down prevalence rates of autism is an impossible task and the variable rates are within the huge margin of error for this difficult measurement.

And then, there’s the whole issue of variance of diagnosis based on race and/or class issues (especially this study demonstrating that prevalence rates vary primarily by income, based on access to care), including the historic tendency to place minority kids in special education as a disciplinary measure.

So basically, SHUT UP.

(very slightly modified from original posting at think on this.)