Category Archives: policy

This Terrifies Me

accessibility, blaming, intersectionality, invisibility, justice, news, othering, policy, politics, race, social attitudes

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.

An OYD Airline Rant

accessibility, feminism, justice, oyd rants, policy, , , , , , , , , , ,

I won’t apologize for her actions and I’m not sorry for what happened to you. It’s not in our contract to assist passengers with their luggage and we reserve the right to refuse assistance to anyone. If that’s what you need, then perhaps in the future, you should make other travel arrangements.

Well, to say the least, that is not the kind of response I expect to get from a customer service representative; not the Entry Level Line Memorizing Oh Dammit Did You Really Ask For A Supervisor people, and I certainly don’t expect it from a supervisor. Were I to get such a resonse I would certainly suspect that something slightly sinister was going on here at said establishment where I was complaining. After all, if I am speaking to a Customer Service Supervisor, things have reached a fairly epic proportion of shit deep inconvenience, because I pretty much go out of my anxiety issue way to avoid having conversations with people I don’t know in person (let alone on the phone). Because I have to weigh the cost of spoons spent on holding myself together long enough to get out the details of what happened, as I did recently with my complaint to Patient Admin about Nurse Midwife V, versus the benefit of getting shit cleared up so it doesn’t happen again to other people who may follow after me and patronize a company, needing services, like in this case, travel.

But here, this is exactly the case. Here, evilpuppy from Incoherent Ramblings From a Coffee Addict, who, expending great energy, spoons, and emotional well being tried to file a complaint on the completely despicable treatment doled out by the staff at United Airlines, and received this condescending and otherwise completely, well, jack-assed and ignorant response from someone who should have a working knowledge of how an employee on an airplane should treat a person with a disability. Not in an email response or even in a letter form; this response was delivered face to face. All of this after she already went to the trouble of pre-arranging accommodations for a wheelchair and made sure to note with the ticket agents — multiple times — that she would need assistance on the plane.

Just a small dose of what evilpuppy endured:

The wheelchair left me off at the door and after making sure I had all of my belongings, he turned around and left. I boarded the plane and made my way back to my aisle seat where I set down my special seat cushion and lumbar brace before looking around for a flight attendant to help me put my luggage in the overhead compartment. The attendant standing in the front section of economy was a blonde woman probably in her late 40s-50s and I called her over to explain that I needed her assistance because I wasn’t capable of lifting my luggage due to my disability. To my surprise, the attendant rejected my request while excusing it by saying: “If I helped everyone do that all day then MY back would be killing me by the end of the day!” I asked her how I was supposed to get my luggage stowed and her answer was: “You’ll just have to wait for someone from your row to come back here and ask them to give you a hand.” When I asked what would happen if no one would, her response to me was: “Well, normally a passenger is around to overhear something like this and they’ll offer to help with it on their own. You’ll just have to ask someone when they get back here.” Then she turned back around and went up to the front seats where she waited to “assist” other passengers.

I was completely flabbergasted, but with no other option, I sat down to wait and pulled my carry-on suitcase as close as I could to try to get it out of the way of the aisle. As I’m sure you’re aware, however, your aisles are considerably narrow and even my best efforts left half of even my small carry-on suitcase in the aisle. What’s more, rather than help me, most of the passengers simply knocked into my suitcase and shoved past me on the way to their own seats. Every time they hit the suitcase, it in turn hit me and jarred my back more and more with each strike. The plane wasn’t even half boarded and it already felt like the pain medication I’d taken less than a half hour prior to entering the airport had worn off as though I hadn’t taken it at all.

Now, I have endured some pretty meh-hessed treatment at the hands of customer service personnel. I have seen other people treated pretty horribly. I have had my disability status questioned, rejected, laughed off. I have had it compared to the fatigue of being a stay at home mother of two children (I am not downplaying the work of SAHMs, having once been one myself, but these are apples and well NOT APPLES!), and of course DIET AND EXERCISE! but never have I had someone so flatly refuse to acknowledge that 1) their co-worker/staff/employee so royally screwed up and 2) that their co-worker/staff/employee’s royal screw up really fucked my world up and over in a way that might just have rendered my next few days useless, since that might mean that I will then be spending the next two or three or more days in bed or on a couch with my feet up trying to recover from the aforementioned loss of spoons and emotional well being.

To put it concisely: Wow. That is messed up.

Not to mention, I am not sure I have ever patronized any business where it was standard procedure for other paying customers to assist a person in lieu of the paid employees who are standing around. It just seems lately that airlines are giving me more and more reasons to not give them more money than I can afford to basically be treated like crap.

I have never been told that it wasn’t the job of the person whose actual job it was to help me.

OOPS! UNITED STEWARDESSES! ITS LIKE TOTES YOUR JOB!

Once passengers are onboard the aircraft, our flight attendants can help with stowing and retrieving carry-on items, as well as providing wheelchair assistance to move passengers to and from the aircraft lavatory (although they cannot provide assistance inside the lavatory). Flight attendants may also provide assistance with taking oral medication, identifying food items on meal trays and opening packages.

Is there a single airline that isn’t treating humans like chattel these days? That isn’t outright pissing me off for one reason or another (well, Korean Air hasn’t yet, but I haven’t flown International since the Christmas debacle). I am beginning to think I will need to take a boat to get home the next time. And Space A military flights are a privilege I am willing flex more and more if I have the time and pain medication available. It might be worth it to not be herded on and off a plane like cattle, denied bathroom and water privileges for hours on end (which can be living hell to a PWD).

Oh, and also:

Then the flight is delayed. We sit on the runway for some time, and because of the new federal law requiring that airlines not keep people on the tarmac for more than 3 hours, they let us off for about 5 minutes before insisting we all get back on because we are leaving right now. We do not leave right now, or for several more hours. They let us off the plane again. Shortly thereafter, they insist that we all get back on the plane because we are leaving right now. We do not leave right now.

At some point after the second or third round of boarding and being told to sit down because we are leaving right now, a man towards the back of the plane stands up to get himself a cup of water. For context, this flight is (or was supposed to be) a 7:40 a.m. flight from Atlanta to New York, landing around 9 a.m. It is full of (mostly white) business people in suits. This man is brown, and appears to be South Asian. A flight attendant at the front of the plane, near where I’m sitting, sees him stand up and panics. She throws open the airplane door and starts yelling at him that he isn’t allowed to stand up, and that he needs to exit the plane immediately. The man is confused, and says, “What? I was only standing up to get a cup of water.” She yells out, “I don’t care, you’re off the flight! Get your things, you’re off the flight!” Water Man starts arguing with her about how he just wanted a glass of water, and he is happy to sit down now, but he’s not getting off the flight. The flight attendant says that she feels threatened and gets a supervisor, who in turn gets airport security, who in turn tell the man that he is going to be arrested and charged with a felony if he does not exit the aircraft. The man, probably smartly, exits the aircraft.

Like Jill passes over in her rant here, with all the hype of racial profiling being trendy, if you assert your right to a simple thing like a drink of fucking water while daring to be brown you can be thrown off of a flight.

Thankfully The Consumerist has picked up on this (although “who says she’s disabled”? Could we pour more salt on this?). I am not entirely sure how much good this does things like this, except that I give them all kinds of link love on Facebook when I find something relevant, so maybe this went viral? I would however, like to point out that the comments at The Consumerist are some of the worst disability blaming shite I have seen in a while (and it shows how safe my social justice bubble is). It seems that we, the PWDs, should not dare to carry on a bag if we a) need a wheelchair to get on a plane b) can’t lift it ourselves and c) have the audacity to want to be treated JUST LIKE EVERYONE ELSE ON A PLANE. Also, don’t forget, if you take pain medication, and/or dare to have a drink on the plane to settle your anxiety you are not to be believed when you make claims as to the crappy ass treatment you received. Nope.

Because there is no way in the entirety of the multiverse that you would ever remember something as abusive or as hurtful or as downright dehumanizing as what Dina the Customer Service Supervisor at SFO said to you, for the rest of your life, or how it made you feel at that moment in dog damned time. Evah.

PWDs are not human. We are not people who should be existing in the same world with those good, hard working, abled-bodied people who can do everything themselves. To hell with us, for not being able to lift our bags! Forget that we just maybe had to scrape together all the money we had to afford the damned flight in the first place so that extra twenty five dollars is NO BIG DEAL JUST CHECK YOUR DAMNED BAG YOU LAZY STONED JERKS!

Silly me for expecting human treatment for all humans.

Via commenter Livre at The Consumerist, United is apparently attempting to contact (or has, I am looking into it) in true “Oh Snap Kevin Smith Has One Million Twitter Followers DOOOOOO SOOOOOMETHING” fashion to try and do damage control sort this out.

Sort this out? That would be something, now, wouldn’t it?

h/t to my friend Kate on Facebook

The Community First Choice Option

accessibility, activism, class issues, policy, politics, poverty

So it looks like here in the United States, after what seems like a full century of arguing and revising and protesting and name calling, our legislature may actually pass a health care reform bill today. This is far from an unqualified victory – the bill is a very mixed bag from a number of viewpoints, and PWDs have both reasons to be happy and reasons to be upset. In other words, there’s not one “right” way to look at the bill from a disability rights perspective and people can still be committed to disability advocacy whether they love or hate this bill. (You’ll notice I cagily haven’t taken a position on the overall bill.)

There is one aspect of it that is very exciting, though, and has been the result of strong advocacy from ADAPT and the National Council on Independent Living: the Community First Choice Option. The CFC Option would give states the option to request federal funding to provide in-home assistance and support to PWDs. The goal of these programs is to facilitate PWDs staying in a community-based setting – living independently, with a partner, family, or other arrangement – rather than moving to a full-time care institution such as a nursing home.

PWDs would be able to access a variety of types of assistance, as ADAPT describes:

Services under this option would include services to assist individuals with activities of daily living (ADLs), instrumental activities of daily living (IADLs), and health-related tasks through hands-on assistance, supervision, or cueing. ADLs include eating, toileting, grooming, dressing, bathing, and transferring. IADLs include meal planning and preparation; managing finances; shopping for food, clothing, and other essential items; performing essential household chores; communicating by phone and other media; and traveling around and participating in the community. Health-related tasks are defined as those tasks that can be delegated or assigned by licensed health-care professionals under state law to be performed by an attendant. Services also include assistance in learning the skills necessary for the individual to accomplish these tasks him/herself; back-up systems; and voluntary training on selection and management of attendants. Certain expenditures would be excluded, including room and board; services provided under IDEA and the Rehabilitation Act; assistive technology devices and services; durable medical equipment; and home modifications.

There is a similar program, In-Home Supportive Services (IHSS) currently existing in California that is based primarily on state funds that has proved a win for both PWDs and for state budgets. The benefits for PWDs are clear – they are allowed the dignity and independence of a community-based setting rather than needing to move to an institution for support. It has also benefited the state, however, because the average yearly cost per IHSS consumer is $10,000, compared to the $60,000-80,000 it would cost to institutionalize that person. Since Medicaid, the state and federally funded health insurance program for low-income folks, would bear the bulk of the cost of institutionalization, IHSS provides a significant cost savings. These are programs that do the right and moral thing by allowing a PWD to remain in the community while saving the state money at the same time – a win-win. For yet another win, family members of the PWD can sometimes be paid to serve as a caregiver, increasing income to the household to ameliorate the poverty disproportionately experienced by PWDs and their families.

Here are a couple of stories from IHSS consumers about how the program affects their lives:

Jill has had back surgery and 3 knee surgeries and is unable to stand for more than 20 minutes at a time. Her 11-year-old daughter has ADHD and needs to be watched at all times. The combination of dealing with knee and back pain, migraines one to three times a week and caring for her daughter Courtney leaves Jill unable to take care of certain household needs such as cooking and cleaning her home. Without IHSS services Child Protective Services might have placed her daughter Courtney in foster care.

Christie Ritter: On October 1st, 2002, I was stopped at a traffic light. It was my day off from being a respiratory care therapist in a hospital. I worked neonatal and pediatric specialty. I was sitting at the light, waiting for it to turn green, heard some screeching tires. Next thing you know, I have a car coming through my driver’s side door. Broke my neck and my lights went out. So when I woke up, found out my neck was broken and I’m a quadriplegic.
Jahad: Ritter has some movement in her arms and legs, but she can’t grip or hold things and she can’t hold herself up well enough to walk. Ritter fought for in-home care. And with therapy and assistance, she holds down a full time job and lives in her own home.

There are problems even with this portion of the bill – the availability of the optional federal funding has been delayed a year, and individual states can still opt not to administer the program. It is, however, a good and positive step in the right direction.

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

accessibility, autonomy, class issues, disability activism, justice, mental health, policy

From the New York Times:

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

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

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

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

Newsflash: Poverty is Bad for Your Health

class issues, disability activism, intersectionality, policy, politics, poverty, race

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

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

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

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

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

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

Do you REALLY trust women?

autonomy, bodies, feminism, gender, intersectionality, justice, media and pop culture, mental health, normality, policy, politics, reproductive justice, sexuality, shaming, social attitudes, Uncategorized, , , , , , , , , , , , , , , , , , , , , , , , , ,

For the purposes of this post, I would like to remind everyone that the range of disability includes people who are mentally ill, paralyzed, Blind, Deaf, permanently injured, autistic, physically disfigured, with compromised immune systems or disordered speech or chronic pain or cognitive impairments, and many, many others. Disabilities may be fatal or not, may be degenerative or not, may be apparent or not. Being painful, fatal, stigmatized, or poorly understood does not mean that life is not worth living, and I will not tolerate any attempts to enforce a hierarchy of disability; there is no category of Especially Bad Disability that destroys any chance of worthy life.

A blue-purple sunburst in the background, white letters reading "TRUST WOMEN: Blog for Choice Day 2010"

Blog for Choice Day 2010

Have you ever participated in the stigmatizing of pregnncy, childbirth and childrearing when the parent, child, or both have, or could have or obtain, disabilities?

Have you ever participated in the cultural narratives that say:

  • Older women should not have children because their children are more likely to have a disability
  • Women with disabilities should avoid having children because their children might also have a disability, and it would be wrong, unjust and cruel to give birth to a child that is not in perfect health
  • Women with disabilities should avoid having children because only temporarily-abled women can properly parent a child, or being a mother with a disability would somehow deprive the child of necessary experiences or put a burden on the child
  • Women with disabilities should avoid having children because they are more likely to be poor and need public assistance, and their children would also be more likely to use public assistance in the future, resulting in a drain on temporarily-abled taxpayers
  • Women with disabilities would be selfish to have children, and to do so would contribute to environmental destruction, economic decline, and even degradation of the human species, and they and their children would be less valuable members of society because of their lack of perfect health
  • It would be a tragedy to have a disabled child, disabled children are less desirable than temporarily-abled children
  • Life with a disability is inherently worse than life without one; life without a disability is the baseline by which all life should be measured, so of course to have a disability would be a negative and would make a person’s life worse
  • Disabled children are a burden on their temporarily abled parents, more so than any other child would be, and this is because of the child’s disability rather than because of the lack of support and affirmation throughout all levels of society for PWD and their loved ones
  • Of course it is more desirable for a child to be perfectly healthy than to have some sort of medical imperfection, and those medical imperfections are a big stress and hassle on the temporarily abled people around the child, and there is something wrong with the child for failing to meet an impossible standard of perfection
  • Health and ability are objective concepts and our current cultural wisdom on them are completely right and the medical industry that puts them forth is infallible; our ideas about health and ability are the only right way to look at things and can be universally applied
  • To violate those cultural ideas means that you are inherently flawed
  • The answer to all of this is to go to excessive lengths to avoid ever having, or being around someone who has, health problems, up to and including letting the least healthy die off or be terminated before they can live at all

You know what? I’ll bet you’ve all done it. Even the most radical disability activist has participated in some of these cultural tropes at some point in their lives.

But I’ll bet the vast majority of people “blogging for choice” would never think of disability as related to “choice” issues, and if they did, it would be for the right of temporarily-abled higher-class white Western women to terminate a pregnancy that has a more-than-minute chance of resulting in a less-than-perfectly-healthy child.

This is why the “choice” framework fails. It fails all of us, but it particularly fails those of us who fail to meet society’s idea of the optimal person: the pale, thin, beautiful, and financially comfortable picture of perfect health. The person who never relies on others (no!), is “self-sufficient,” and isn’t likely to end up a burden on the important people.

The rest of us can “choose” to stop existing.

Do you really trust women? Or are you perfectly willing to override their choices if you feel they threaten your comfortable position in society?

And you expect me to think you’re any better for my rights and needs than pro-lifers, why?

(Cross-posted at three rivers fog.)

Edit, Saturday 1/23: I am being very strict in moderating this thread. The primary response from people who do not identify as disabled seems to be “Well, I respect your choice, even though it is clearly cruel and bad/makes me ‘uncomfortable’/is the ‘wrong’ choice.” That is exactly the opposite of what this post is saying. If that is what you got out of this post, you have a LOT of stepping back, listening, and learning left to do.

I’m not asking you to be nice enough not to forcibly prevent us from ever having children, or anyone from ever having disabled children, even as you eagerly stigmatized disabled motherhood/childhood; I am asking you to genuinely examine the deep-rooted prejudices you have been taught and challenge your thinking on childbearing/rearing and disability. I am asking you to question why you have these ideas about disability, and whether they are appropriate to hold as a person committed to social justice. Including for women.

Because, here’s a hint: a lot of us women have disabilities, and all of us were children once, and some of us will have children of our own. And we are still women. Are you really protecting women’s freedom? Or are you merely preserving the temporarily-abled supremacist structure of society, with temporarily abled women as a convenient proxy?

I ask you to consider these prompts, to attempt to truly challenge your assumptions about disability and parenthood. If you aren’t willing to do that, please don’t drop in to explain why disabled women are “Doin It Rong.” Check your privilege. Thanks.

SSRIs, Violence, Walking, and Dogs

blaming, medical practice, mental health, policy, shaming, violence

Recently a link was making the rounds on Tumblr about how SSRI anti-depressants caused violent and homicidal reactions in people (h/t to the lovely Cara for making sure we saw it). I was largely ignoring it because, frankly, there’s a lot of unproductive discussions about whether SSRIs, or anti-depressants in general, or even psychotropic drugs as a whole, are teh most awesome things ever! or an evil tool of big pharma or poisoning our children or should be put in the water supply to help the population at large. And my attitude towards psych treatment, whether it be therapy or medication or anything else, is pretty similar to my attitude about religion: everyone has the right to make their own determinations about their treatment and whether they would or would not like to take psych meds, and just as my atheism doesn’t make someone else’s faith any less valid, I can support someone’s decision to reject psych meds without lessening my own right to believe they help me personally. (To extend that, I support anyone’s right and decision to pursue or not pursue any kind of treatment, to identify as they feel appropriate, and to reject the whole framework and basis of psychiatry.)

That said, I thought it might be useful to take a look at this article to discuss some of the issues I see in a lot of these arguments and discussions. The basic gist of the article is to publicize an archive of “3,500 crime related news reports linked to the use of SSRI antidepressants … Pharma and the FDA may still be agnostic about SSRIs causing violence but 700 murders, 200 murder-suicides and 47 postpartum depression cases, including the 2006 case of Andrea Yates who drowned her five children on Effexor, don’t lie.” The article describes the site as “more of a public service than the FDA which has yet to withdraw the drugs named in the 3,500 stories–or even call them dangerous,” so the clear goal of the article is to encourage prohibition of SSRIs as a class.

That’s a pretty broad goal to be supported by such thin and unconvincing evidence – and that’s my problem with these kinds of arguments. Whenever I talk about these kinds of science articles, I often use the same phrase: “correlation does not equal causation.” This means that although two variables may be very closely associated, there’s not enough information to figure out which of them causes the other, or even if the two are related by anything more than chance and coincidence. A simple example is that everyone who orders food at McDonald’s is a human. Can we assume that if a dog walked into McDonald’s and ordered food, it would magically transform into a human because of the correlation between ordering at McDonald’s and being human? No.

To unpack this further, let’s look at the fact that a lot of people who walk in my neighborhood have dogs. I know some people who got dogs specifically in order to encourage themselves to do more walking – so the dog is influencing how often they walk. However, I also know people who do a lot of running or hiking and got a dog to keep them company on their outings – so their walking/running influenced their having a dog. So does being a person who walks outdoors make you more likely to get a dog, or does having a dog make you more likely to walk outdoors? We just do not have enough information to figure that out. This means my observations of walkers and dogs should not justify a public policy to issue dogs to every household to ensure people walk outdoors.

To extend this to the SSRI stories, there’s not enough evidence for us to determine if people who are not violent or homicidal become so when they are given SSRIs, or whether people who are already violent or homicidal are likely to be given SSRIs for treatment. And that’s a very important thing to be absolutely clear on when we’re talking about having the FDA eliminate an entire class of anti-depressants that some (including me) rely on for treatment.

There’s a couple other factors in the dog analogy that I also see at play in this SSRI story:

  • Observer bias: I think dogs are pretty cute, so when I’m out and about, I tend to notice pedestrians with dogs more than I do pedestrians without dogs. So if I see 10 pedestrians and 4 of them have dogs, I’m much more likely to notice and remember the dog people and think that the majority of pedestrians have dogs. Similarly, self described “anti-SSRI advocates” are more likely to notice and prioritize instances where SSRIs occur with violent behavior.
  • Who is observed: I happen to live two blocks from the most popular dog park in town, so people from miles away drive here in order to hike with their dogs. There are a lot of trails that don’t allow dogs and if I lived right next to one of them, I’d likely see a lot more walkers who are dogless. So I’m not looking at the entire population of walkers and dog owners when I’m observing a connection between those two characteristics – I’m looking at a population more likely to suggest to me that the two are connected. Similarly, the SSRI stories are drawn entirely from crime reporting. Stories about people who take SSRIs and do not engage in violent, homicidal, or otherwise criminal behavior are not going to be in a crime story – so the archive is looking at a subset of SSRI-takers that is more likely to confirm their perception that SSRIs cause criminal behavior.
  • Interpreting evidence to fit desired results: when growing up, I tried out the “dogs will make me walk and exercise more” argument on my parents. This is because I wanted to get a dog, and I was trying to put together any argument I could to support that conclusion – I had started with the conclusion instead of with the evidence. Some of the stories mentioned in the article make me wonder if the SSRI stories suffer from the same problem. One of the quoted stories is “Lynyrd Skynyrd harmonicist Mike Caruso’s remark that, ‘the doctor put me on Cymbalta. That turned me manic.'” To me, giving an anti-depressant to someone with undiagnosed bipolar and triggering manic behavior is a very different argument than if taking the SSRI created violent or homicidal behavior that hadn’t previously existed in the person.

In order to convince me that SSRI used caused these behaviors in people who otherwise would not display them, I would want to see a clinical study where people were observed before and after starting SSRI treatment and a control group was also monitored while not having SSRI treatment. Those kinds of scientific studies are the only way to meaningfully determine whether the two variables have any kind of causal relationship.[1] And without that data, this article does a lot more harm than good – by reinforcing existing perceptions that criminals are all mentally ill and by shaming or scaring people who take and benefit from SSRIs.

[1] I should note that requests for data and scientific studies are often used to invalidate or minimize reported personal experiences from marginalized groups, an academic privilege argument of sorts. I do and continue to credit individual experiences where SSRI treatment caused specific behaviors for that individual, but I feel very uncomfortable making blanket decisions about whether or not these drugs should be available at all, for anyone, based on third party descriptions of the experiences of others.