All posts by abby jean

Lean On Me

26 April, 2010introspective, mental healthabby jean

Lean on me, when you’re not strong, I’ll be your friend, I’ll help you carry on.

I read a recent article in the Chicago Tribune about the increase of peer support groups as mental health treatment, rather than wholly centering on a physician or therapist to guide treatment. The article talks about how people with mental illness use these peer support groups to get

“a chance to discuss and maybe get help for problems that, all too often, their friends, families and even therapists didn’t seem to understand. How do you feel comfortable at social gatherings when everyone there knows you tried to kill yourself? Should you abandon your religious faith if you’re prone to thinking that you’re God? How do you handle your illness when your child has it, too?”

I obviously believe in the benefits of this kind of peer support and discussion, or I wouldn’t be writing about my mental health issues on a blog for people with disabilities. I have gotten invaluable support, information and insight from friends with mental health disorders. Not only the big issues, like reassurance that depression will eventually lift and the sky will not fall on my head. Some of the most useful stuff I’ve gotten is a discussion of which facial scrub best deals with the flaky dry skin caused by taking lithium. (I use Pond’s Fresh Start Exfoliating Scrub with microbeads! They do not send it to me – I buy it.) I also strongly support the centering of people with mental illness and their own experiences.

But I’ve also had a couple of times when being so close to friends with mental illness may have been a bad idea. My roommate and best friend in college also was struggling with newly diagnosed mental health issues of her own, and a crisis for one of us tended to precipitate a crisis in the other. I vividly remember sitting in the waiting room of the emergency room as she was being admitted, folded up in the plastic chairs in the waiting room, reading The Bell Jar while I waited for her to be processed. And going into an immediate spiral that ended with me checking myself into the hospital a few weeks later. Where, despite being strip searched and in a carefully controlled environment, I learned from my fellow patients how to find things to use to self-injure.

For me, the scariest thing about depression is how seductive it is. Just giving up, since nothing matters or will accomplish anything anyway, and letting myself turn out to be the failure and disappointment I know myself to be. (Says the depression voice.) And getting well, and staying well, and maintaining the wellness, can be so exhausting that it can be tempting to just chuck it all. So I can find myself fetishizing the experiences, the memories. The accessories – the things I used to self-injure, the dark rooms and shapeless clothes. The feeling of being insulated from the world, wrapped in cotton wool, removed.

That’s why these support groups scare me. I saw that article and I felt it in my stomach. I can close tabs and scroll past these things on the internet, but in a room, talking to someone, I can’t just put my hand over their mouth. Maybe this is something totally unreasonable, an unfounded superstition I have, but I feel like it might pull me back in.

When Accommodations Conflict

23 April, 2010accessibility, disability activism, mental health, policyaccommodations, smokingabby jean

Accommodations can be difficult. Not only for an individual with a disability to identify what accommodation would be relevant or helpful for them, not only convincing whoever to implement the desired accommodation, and not only ensuring that the accommodation continues over time and doesn’t lead to resentment or punishment for the person with a disability. Here is an additional wrinkle – sometimes desired or needed accommodations conflict. What one PWD needs to accommodate her disability could not only not help another PWD, but might actually exacerbate their disability.

Let’s take an example: smoking. For some PWDs, especially those with mental illness, smoking can help ameliorate their symptoms, calm their anxiety, even help some with restoring neurochemical imbalances. The rates of smoking among people with mental illness tend to be much higher than the general population, in which about 20% of people smoke. Here is a chart of smoking rates among PWDs with mental illness:

MENTAL ILLNESS:	PERCENTAGE WHO ARE SMOKERS
Bipolar Disorder	70%
Major Depression	60%
Schizophrenia	90%
Panic Disorder	56%
Post Traumatic Stress Disorder	60%

There are lots of theories why people with mental illness smoke. At a recent meditation seminar, the instructor was modeling deep breathing techniques for relaxation and stress reduction. He pointed out that the deep breaths, with an exhale longer than the inhale, breathing from the abdomen, exactly mimicked the breathing of a smoker while inhaling from a cigarette and exhaling smoke. I know people who took up smoking intentionally and specifically in order to help regulate breathing during panic attacks – they report that the 5-7 minutes of regulated breathing during one cigarette is enough to get them through a panic or anxiety attack.

Nicotine, the active ingredient in cigarettes, also acts as a stimulant on the brain. Some report enhanced attention, focus, and concentration, which can be helpful for people with attention or focus problems caused either by their disorders or the medications that treat them. As one study reports: “Certain thinking patterns are affected in schizophrenia including sustained attention, focused attention, working memory, short-term memory, recognition memory and even processes that are preattentive (eg reflexes). Some studies have suggested that there may be improvements in these areas after treatment with nicotine.” Those authors theorize, as have many others, that “it may be that patients “self medicate” to remediate the chemical imbalance in the brain (dopamine hypofunction in the pre-frontal cortex) which may help with certain difficulties with thinking tasks involving this PFC area and might explain why there is smoking persistence in schizophrenia.”

On the flip side, of course, there are many PWD for whom being around smokers or smoke will exacerbate their disabilities and a necessary accommodation is an atmosphere free from smoke. People with asthma and other respiratory problems or people with allergies and chemical sensitivities could be seriously harmed by being around smoke or people who are smoking, and could require an accommodation to be free from smoke exposure.

This sets up the possibility that there could be two PWDs – let’s say one with schizophrenia and one with severe smoke allergies – who require accommodations that are directly conflicting with each other. These situations are much trickier for me than when a PWD is requesting an accommodation that an employer, business, government, or other entity is saying is too difficult or expensive to implement. In those situations, I believe the accommodation rights of the PWD should trump that concern in the vast majority of cases. But handling issues of conflicting accommodations can be much more complicated, because the rule of “you must accommodate PWDs” doesn’t give us any guidance on how to proceed.

This is just one example of desired or needed accommodations that can directly conflict, but there are many others. How do you think these situations should be handled? Have you run into conflicts like this in your own life?

Note: discussions of conflicting accommodations – including the example discussed above – can become very charged and very personal, as readers and commenters may have personal preferences or needs on which accommodation to implement. Please be respectful of the needs of other PWDs in this comment thread. Specifically, comments that imply or state that smokers are inherently evil or people who don’t smoke are inherently intolerant (or similarly bright line rules) will be deleted.

Bullying – How Can We Stop It?

22 April, 2010age, disability activism, justice, news, policy, violenceabby jean

Here’s another horrific story of bullying, this coming out of Dickson, Oklahoma.

Austin Avery was born prematurely and suffered developmental issues as a result. Last week, when the school called [his mother] Sharlene, she knew something was seriously wrong. “We had a call from the school to come pick him up cause he was hallucinating. I just don’t understand why your child goes to school and comes home in a drunken stupor,” says Avery. So, she put him in the car and drove to the emergency room. That’s when doctors told her something she never imagined. “The doctor said that [Austin] was way over the legal limit [for alcohol]. Now, can you imagine a 14-year-old child and what kind of damage that can do to his brain?”

The investigation yielded a report from a fellow student, who reported that bullies had been putting Germ-X, an alcohol-based hand sanitizer, in Austin’s milk at lunchtime. This had been occurring regularly since January, without detection by the school or any adult in a position to discipline the bullies.

There are a couple things of note about this story. First is that it got virtually no coverage – I saw it only because I read several hip-hop gossip sites that picked the story up because the child is African-American. Other than those sites, I found absolutely no mention of it anywhere on the web other than the initial report from a local news outlet, quoted above. Intentionally poisoning a child with hand sanitizer seems like a pretty big deal to me – there could have been much more significant and detrimental side effects than alcohol intoxication, and even alcohol intoxication is dangerous enough when we’re talking about a 14 year old with developmental disabilities.

The second thing of note about this story is that Oklahoma already has an extremely robust anti-bullying law and state policy aimed at eliminating bullying. A watchdog anti-bulling group gives the Oklahoma law an A, indicating it is “near perfect” by their standards. Here is a description of their anti-bullying law:

Requires Safe School Committees to give special attention to bullying, incidents of unwanted physical or verbal aggression and sexual harassment and make recommendations. Encourages community involvement, one-on-one student/staff relationships, use of problem solving teams of counselors and/or school psychologists and requires the review of bullying prevention programs utilized by other states, agencies or school districts. Requires each school district to have policies addressing the prevention of bullying and education about bullying behavior.

So – given that all those rules, policies, requirements, and education were insufficient to stop Austin from being regularly and consistently poisoned for almost four months – how can we realistically address and stop this kind of bullying from happening? How can we provide meaningful protection for children with disabilities? Is it possible to do so through laws and regulations, or will only a long term shift in ableist attitudes be effective?

This Terrifies Me

19 April, 2010accessibility, blaming, intersectionality, invisibility, justice, news, othering, policy, politics, race, social attitudesabby jean

Here in the U.S., there’s been a lot of buzz about a new immigration law passed in Arizona (including on meloukhia’s tumblr, where I first saw it). Their state legislature just passed a bill that “makes it a crime to lack proper immigration paperwork and requires police, if they suspect someone is in the country illegally, to determine his or her immigration status. It also bars people from soliciting work as day laborers.”

This is a big change from the current situation. Because immigration is a nationwide issue, the federal government makes the immigration laws. There is a federal Department of Citizenship and Immigration Services that administers applications for immigration status. There is a whole department of Immigration and Customs Enforcement with quasi-police enforcement agents that put people in quasi-jail immigration detention facilities. It’s a whole federal system that runs parallel to the police and sheriffs who work for individual cities and counties.

For a long time, not only were local police not solely responsible for enforcing federal immigration laws, it was a longstanding rule that state and local police did not have the authority to enforce those laws. State and local police actively tried to distinguish themselves from immigration enforcement so that community residents who were immigrants would continue reporting crimes and helping the police with investigations. The split between responsibilities serves an important purpose in protecting overall public safety.

This is why it’s a big deal that this new law would require local police to determine the immigration status of anyone they suspect to be in the country illegally. Given the vague description of what would be an acceptable reason to suspect someone to be undocumented, it’s extremely likely this is going to translate to “check the papers of anyone who is Latina/o.” “A lot of U.S. citizens are going to be swept up in the application of this law for something as simple as having an accent and leaving their wallet at home,” said Alessandra Soler Meetze, president of the American Civil Liberties Union of Arizona.

Certainly a police officer fulfilling their requirements under this new law might in fact discover that someone is undocumented. But this law also gives every police officer carte blanche to insist on immigration paperwork from anyone they want – another tool for harassment and intimidation that will surely be deployed selectively. It warns not only undocumented people, but all immigrants and anyone who might appear to be or resemble an immigrant in any way – stay inside. Disappear. Vanish. We do not want you here and if we see you we will hassle and interrogate and judge you.

This law just used the official voice of the state to tell this whole group of people – most of them people of color, most of them legally present in the U.S. – that they are not wanted.

That message of not being wanted, that directive to become invisible and disappear, that clear desire that a whole group would just go away and stop being a bother. That’s the same feeling I get when reading articles like this one in the Fresno Bee bemoaning an effort to get local businesses to provide accommodations for people with disabilities. Just think of the economic effect on local retailers! They’ve been open for 20 years! How dare the PWDs file lawsuits instead of just asking the proprietor who I’m sure is very nice and would just love to help out voluntarily! The message is the same – having PWDs here is too expensive. Too much work. Something to be given only out of the generosity of those in charge, not demanded. If only the PWDs would just go away our local businesses would be fantastic!

In one instance, popular opinion and the business community are telling PWDs to go away or be invisible. In the other instance, the state government is telling immigrants to go away or be invisible. Both are premised on the acceptance of the idea that it’s ok to look at a minority group of people and reject them, as a group. That’s why I reacted negatively to both those news articles – it is not ok to oppress people as a group. If it’s ok to treat immigrants that way in Arizona, that legitimizes treating PWD that way in Fresno. And this law is such a big step in the wrong direction that it makes me worried about similar erosions for other groups – including PWDs.

Dr. Drew – Stop Policing Other People!

16 April, 2010blaming, media and pop culture, shaming, televisionabby jean

Dr. Drew enrages me. The way his whole empire is built on callous exploitation of the pain, suffering, and need of others makes me very suspicious of his motives and goals in treating people. But even more than that, his eagerness to observe people through tabloid reporting and unsubstantiated rumors and then make unfounded assumptions about whether they’re experiencing substance addiction or abuse issues and/or mental health issues is, frankly, repugnant.

He’s been targeting Lindsay Lohan recently, and has said some absolutely outrageous and unacceptable things about her in recent days. I saw this reported by the Onion AV Club and they respond so nicely I’m just going to quote them:

Dr. Drew Pinksy, of Celebrity Rehab With Dr. Drew, Sex Rehab With Dr. Drew, and Dr. Drew’s Ol’ Fashioned Healing Vapors & Hair Tonic, is obviously a great doctor. He can diagnose life-threatening drug addiction just by listening to unsubstantiated rumors. He knows which cameramen will help the most in each individual addict’s recovery. And he is great at uncovering and broadcasting an addict’s childhood trauma—which is the only reason anyone becomes addicted to anything ever.

In fact, Dr. Drew is such a great doctor, he diagnosed then officially cured Lindsay Lohan via an interview with the always reliable gossip website RadarOnline.

First, Dr. Drew detailed his recommended course of therapy for Lohan:

“If she were my daughter, I would pack her car full with illegal substances, send her on her way, call the police, and make sure she was arrested. I would make sure she was not allowed to get out of jail. I would then go to the judge and make sure she was ordered to a minimum of a three year sobriety program.”

I’m sure Dr. Drew already emailed this interview to the head of development at VH1, because in addition to being a terrific treatment plan for an addict (and also a morally sound thing to do), Dr. Drew’s Celebrity Frame-Up & Jail For Addicts Featuring Dr. Drew would also make a great reality show.

But after pitching his new show/course of therapy for Lindsay Lohan, he added this:

“I would say it’s less than a 1% chance of her making the decision to go to rehab. I have said this many times before, I believe that Lindsay will make a wonderful sober person, someday, if she survives this. I absolutely wish no harm to her, but I just have a feeling that something awful is going to happen to her, like she is going to lose a limb. I hope Lindsay gets help before something terrible happens.”

Something terrible like having a celebrity doctor diagnose you on a gossip site, or tell you what you need to do, or plant drugs in your car then call the cops on you?

It is easy to imagine the same kind of “logic” and “help” being applied to someone with a mental illness. Dr. Drew might suggest calling the police and saying that an individual had threatened suicide – even plant a weapon or suicide note on them to be sure the police would take them in for psychiatric commitment. He would publicly judge and shame that person for not seeking what Dr. Drew considers to be appropriate and beneficial treatment and imply that if his proposed treatment plan isn’t followed, any harm that befalls the person is their own fault.

This is not ok. It is dangerous, and is unfounded judgments and shaming. And it is utterly inappropriate and unacceptable from a medical doctor.

Idaho Revises State Laws to Remove Ableist Language

13 April, 2010disability activism, justice, language, news, politicsIdahoabby jean

Exciting news! On March 29th, Governor C.L. Otter signed a law removing ableist language from Idaho’s state code. From the Idaho Statesman:

The new law replaces outdated language in 73 different laws – including those addressing health and welfare, education and corrections – with more accepted phrases such as “intellectually disabled.”

Disability rights advocates said the revisions send a message to regular Idahoans that their government doesn’t tolerate disrespect, since words like retarded are used, especially among teenagers, to insult others or describe distaste. Officials in several other states, including Washington and Oregon, have enacted similar laws.

Here are a few examples of changes made by the law (from the bill text of Senate Bill 1330, available here)

A law giving interpreters to people appearing in court or witnesses in court cases says interpreters will be given to anyone “who does not understand or speak the English language, or who has a physical handicap which prevents him from fully hearing or speaking the English language.” The word “handicap” has been changed to “disability.”
A law ordering criminals on probation or parole to pay for the cost of supervision allows exemptions if “the offender has an employment handicap, as determined by a physical, psychological, or psychiatric examination.” The term “an employment handicap” has been changed to “a disability affecting employment.”
A law requiring fire safety plans and procedures defines an ‘institution’ as including “facilities for the mentally ill or mentally handicapped.” The description now reads “facilities for people with mental illness or intellectual disabilities.”

On one hand, this isn’t a huge change, and it can be argued that these are cosmetic changes when people with disabilities would be better served by changes to the actual laws, not just their wording. But I believe removing this ableist language from the official law of the state is a meaningful step to take. Governor Otter made a statement when signing this law:

Otter compared words like retarded to racial slurs Americans used during World War II to describe Japanese people.

“We refer to people as Asians now, as Japanese,” he said. “During the Second World War, we always used the most derogatory terms that were possible at that point. It suggested the anger in our society at Pearl Harbor.”

What an amazing quote! It’s clear recognition that ableist language like “retarded” in a state law is simply codifying oppression. Removing those words is an important achievement.

All Those Healthy Eating “Rules” are Just Guesses, Really

11 April, 2010activism, bad advice, blaming, bodies, Uncategorizedeating, food, vegetablesabby jean

File this under “Who Even Knows, Anymore?”

s.e. smith recently posted a photo of a “5 a day” tag that came on some asparagus she bought. She felt, and I agree, that those tags are a form of food policing – instructing people what they “should” eat. The corollary, of course, is that if people do not follow these food guidelines, their unhealthiness is their own fault. s.e. explored some of the problems with these educational campaigns over at This Ain’t Living, but I want to highlight another problem here.

That problem being, namely, that NOBODY KNOWS WHAT THEY ARE TALKING ABOUT. From a recent article at Scientific American:

The recommendation that people eat at least five servings (about 400 grams) of fruits and veggies each day, espoused by the WHO since 1990, was based on studies that found a link between higher intakes of these foods and lower risks for cancer and other diseases.

Since the 1990s, however, evidence from large studies has been mounting that the protective effects of these foods against cancer in particular might be modest—if it exists at all.

The results are in line with other findings both in the U.S. and abroad that suggest the protective effect of fruits and vegetables is “much smaller than had been believed 10 years ago,” Harvard School of Public Health’s Walter Willett, who wrote an editorial accompanying the study, noted in an e-mail to ScientificAmerican.com. People who eat more fresh fruits and vegetables are also more likely to make other healthful lifestyle choices, such as exercising more and drinking and smoking less, which the researchers noted “may have contributed to a lower cancer risk” overall.

So this “5 a day” rule – which has been adopted as healthy eating dogma all over the world – may not actually be based on much of anything and there’s virtually no evidence to support the assertion that eating more fruits and veggies will automatically lead to better health.

But watch – it will still be used to shame people, and to blame them for their own health problems, regardless of the lack of scientific support. This strongly supports the argument that these healthy eating rules, and other rules about what people “should” do to be healthy, are much less about scientifically proven relationships between eating and health and much more about shaming people for their health problems.

(h/t The Awl for the link, and the suggestion that You Are Going To Get Cancer Anyway, So Have The Steak)

No, It’s Not As Easy As You Think

1 April, 2010accessibility, autonomy, class issues, disability activism, justice, politics, social attitudes, Uncategorizedabby jean

When I talk to people in the United States about disability and the need for accommodations, I am usually met with a bit of bewilderment. “You mean there’s still more work to be done on accommodations? I thought all that had been taken care of.” These are people who are used to seeing wheelchair ramps at the entrance to government buildings, used to seeing the hand switch for wheelchair users to open automatic doors, used to seeing the braille at the ATMs. Given their observations of those existing accommodations and a minimal awareness of the Americans with Disabilities Act (ADA) that mandates those accommodations, they assume that there’s been a consensus on the need to provide accommodations, a law mandating those agreed-on accommodations, and general compliance with that law.

As we well know, that is far from the truth. None of those assumptions are as true or are interpreted as broadly as people tend to assume. There is no general consensus on the need to provide accommodations for the broad range of disabilities that exist – there is general agreement that people who use wheelchairs should have access to government buildings, but there is nothing even close to general agreement on how to accommodate people with depression or even whether depression is a disability “deserving” of accommodation. The US does have a law mandating accommodations – but there are not equivalents in every country and there are significant holes in the ADA itself, often putting the burden of requesting accommodations and demonstrating a need for them on the person with a disability. Finally, the idea that agencies and businesses affirmatively comply with the ADA, obviating the need for enforcement, is just patently false.

A recent federal court decision in underlines all of these realities. In 2005, the American Council of the Blind filed a lawsuit against the Social Security Administration (SSA) “to compel SSA to provide alternative formats of communication that would enable [people with visual impairments] to have more equal access to participate in SSA programs.” (Court documents and information available through DREDEF’s site.) It took until 2009 for a court to agree and order SSA that it is required to issue notices to people with visual impairments in a format they can read – in Braille, large print, e-mail that can be read by a screen reader, computer disks, or audiotape recordings.

This lawsuit undercuts each of the assumptions above. First, there is clearly not consensus on providing accommodations, even to what would be considered a relatively “easy” impairment to accommodate – it is easy to anticipate the functional difficulties that a person with a visual impairment would encounter when presented with a written notice. A lot of these people – 250,000 of them – are getting benefits from SSA specifically because they have a visual impairment, so they’ve given SSA extensive documentation of those impairments and information on the functional limitations caused by the impairments. A much larger group – about 3 million in total – get retirement benefits from SSA. At any rate, SSA knows that these people have visual impairments and has detailed information on how those impairments affect them. And it still has not provided accommodations.

But what about the second assumption – there’s the ADA, right? It turns out that the SSA is not subject to the requirements of the ADA! The ADA applies only to state and local governments and agencies that receive federal funding – it does not apply to federal agencies such as SSA. (Raise your hand if you knew that – few people do!) The only disability rights law that applies is a precursor to the ADA, Section 504 of the Rehabilitation Act of 1973. While the requirements regarding accommodations from government agencies are largely similar, the Rehabilitation Act does provide limited rights in comparison to the ADA.

It’s also very clear that the SSA – despite being the primary provider of cash and medical benefits for people with disabilities – did not consider that it had any obligation to provide accommodations. When individual plaintiffs with visual disabilities requested that they be given notices in alternative formats, they were simply told that no other formats were available. This included notices to which people must respond within 10 days or risk losing their benefits. Even when they were initially sued in 2005, SSA argued that the Rehabilitation Act “did not even apply” to the issue of notices to people with visual impairments. Similarly, SSA did not consider itself obligated to let benefits recipients know that they had accommodation rights under the Rehabilitation Act and laying out a process for them to request and enforce those rights.

The result of the litigation is that SSA is now required to develop a procedure to 1) notify benefits recipients of their rights to accommodations for visual impairments and 2) provide notices in alternative formats when recipients request them. Which is certainly a good thing – but one that I would simply expect from a government agency that administers disability benefits, rather than having to be ordered by a federal court after 5 years of litigation. And if accommodations that are this common sense, from a federal agency set up to deal with people with disabilities, are so hard to obtain and enforce, that demonstrates how very far we are from a society where PWDs are meaningfully accommodated.

FWD/Forward

FWD (feminists with disabilities) for a way forward