There’s been a significant push towards deinstitutionalisation in the United States over the last few years, in no small part due to the Olmstead decision, a major ruling by the Supreme Court that I discussed in a bit more detail here. Short version: Unnecessary confinement of people with disabilities has been deemed a civil rights violation. As a result, the Department of Justice as well as a number of disability rights groups have been suing in a number of states to get people out of institutions.
In Georgia last week:
A sweeping agreement this week between the Justice Department and the state of Georgia highlights an aggressive new campaign by the Obama administration to ensure that people with mental illness and developmental disabilities can get services in their communities — and not be forced to live in institutions.
As part of the accord, Georgia agreed to specific targets for creating housing aid and community treatment for people with disabilities. Those with disabilities have often cycled in and out of the state’s long-troubled psychiatric hospitals in the past. The state said it will set aside $15 million in the current fiscal year and $62 million next year to make the improvements. (source)
This is huge, and will get more help to people who need it in Georgia. The DOJ has been on fire this year with Olmstead-related cases, and the Obama administration has been a major player as well when it comes to pushing the DOJ to pursue deinstitutionalisation and more community-based services for people with disabilities. This is often framed as something ‘too expensive‘ for states to afford, which is I guess a nice way of saying ‘your life just isn’t worth that much to us.’
For people struggling to stay out of institutions and stay in the community, for people in the community without adequate care who are facing the possibility of institutionalisation because they don’t have options, and for people in institutions who want out, legal cases like this recent one in Georgia are huge. Potentially even life and death. It’s particularly galling that many states cling to the ‘too expensive’ cloak when organisations like ADAPT have documented that community based services are actually less costly; yes, it’s actually more expensive to force people into institutions than to let them live in their communities and provide them with appropriate assistance.
The agreement focuses on moving people with developmental disabilities out of institutions into community settings, where they can be closer to their community and family. There are 1,800 people in state mental hospitals, 711 of whom have developmental disabilities, which are genetic disorders that cause cerebral palsy, autism, Down syndrome. Under the agreement, the state will stop admitting people whose primary diagnosis is developmental disability into state hospitals by July 2011, and instead place them directly into community services.
Gov. Sonny Perdue said in a statement, “I am confident that we finally have an agreement that moves us towards our common goals of recovery and independence for people with mental illness and developmental disabilities.” (source)
Another important aspect of this agreement involves providing interventions to people at risk of institutionalisation, preferably before they reach the point of needing it. This is key; it’s not enough to simply change the way people are processed when they start interacting with the system, but to identify community-based needs and fill them before those people end up needing emergency care. Early diagnosis and supportive care is an important part of a programme designed to limit institutionalisation, by keeping people out of institutions in the first place.
This case was filed in part to respond to a series of revelations about horrific abuses in Georgia’s institutions, with The Atlanta Journal-Constitution playing a key role in the unmasking of systemic abuse and other problems. What this case represents, in addition to victory for people with disabilities, is also a victory for the free press. The paper’s decision to cover this issue led directly to more public attention and an outcry, and that resulted in positive change for disabled Georgia residents.
Too often, people with disabilities are covered indifferently in the news or set up as figures of tragedy rather than human beings with their own lives and autonomy and needs. It’s very rare to see one article discussing abuse of people in institutions, let alone to see a series of articles, including investigative journalism, delving deep into this issue and presenting information to members of the public.
I wish that more papers around the United States and in other regions of the world were doing this, because too often I encounter the attitude that institutionalisation should be considered the first option, and that ‘those people’ (you know the ones) would just be better off in institutions. People are routinely shocked when I provide statistics about abuse in institutions, and they shouldn’t be. The fact that they are is indicative of the paucity of coverage disability issues receive in the media.
As s.e. wrote about in a post earlier this week, I am a cartoonist in addition to all the other crap that I do. I’ve been drawing (and writing) for most of my life, and finding the perfect pen has been something of a wild turkey-chase with mixed results. I know that an entire post devoted to pens may seem silly, particularly given the more serious things that I have written about here on FWD. Re-reading some of Amanda‘s Things That Make My Life Easier posts has inspired me to write about…well, writing (and drawing) implements, because the right ones do make things easier for me.
I first read about the pain-reducing benefits of felt-tip pens in the second edition of Starlanyl and Copeland’s Fibromyalgia and Chronic Myofascial Pain: A Survival Manual; the authors, both medical professionals, include the use of felt-tip pens in a lengthy list of tips designed to reduce pain on an everyday basis. Felt-tip pens tend to be easier on the hands and joints. My one huge issue with felt-tips, however, is that many of them produce stronger lines than I would like. This is more of a problem when I attempt to use them for artistic purposes, as I don’t mind a little more heft in my hand-written notes and scribbles. I do use felt-tips on occasion in my cartoon work — especially for panel borders and heavy lines — just not very often.
Felt-tips are good for writing, but depending upon what sort of lines you’d like in your artistic works, the ease of use that felt-tips produce may be their only advantage. Obviously, they’re not the greatest for detail work. I tend to shy away from brushes and pens that require the use of an inkwell or a separate bottle of ink, as the gorgeous lines one can produce with those tools so often translates into absolute hell on my hand and wrist joints, plus a lot of repetitive motion from dipping the brush or pen into the ink and bringing it back to the page (which often equals further hell).
Ball-point pens that don’t have a lot of ink “flow,” in my experience, aren’t great for cartooning either, though they can be useful for storyboards and quick sketches. The ball-points that have worked the most effectively for me have been the “business”-type pens that most folks associate with actual business work. Perhaps people in business have to write things quickly and therefore cannot depend on crappy ball-points and/or face the frustration that inevitably arises when said crappy ball-point runs out of ink. Non-crappy ball points, such as the Uni-ball line of products, may be a bit more expensive than “traditional” ball-points, but if you want a smooth line that is not going to translate into extreme wrist or hand pain, a “business” pen of this sort might be for you.
Another pen type with which I have had some success has been actual drawing pens; many brands are available at art-supply stores or bookstores. I have found that experimentation with different types of pens is a good bet, if you’ve got the time for it (and assuming that you are cool with dropping a couple bucks on pens that might be either awesome or a total disaster). The Preppy fountain pen, made by Japan’s JetPens, may be a good bet for people who would like to experiment with fountain pens and the lines that these pens can create, but who may not have the time, energy or inclination to use a more traditional fountain pen (it has a reloadable ink-cartridge system that is very convenient). There is also the Stabilo brand, which I discovered quite by accident in the clearance rack of an art supply store (I bought a couple specifically because they were on sale). I use the Point 88 type because it’s light, comfortable to hold and can do excellent detail work, but your artistic/writing mileage may vary.
There is no “perfect” pen, of course, but there are some damn good ones out there if you’ve got the inclination to experiment.
This actually went up a few days ago, and it is awesome.
Sharon’s hosted the First Assistance Dog Blog Carnival at After Gadget.
From the tremendous response of the AD blogging community, it seems as if I’m not the only one who is excited to share an AD “First” with our readers. In fact, the themes of excitement, joy, and pride run throughout the blogs in this edition. There were also a lot of blogs on the same or similar topics. I had hoped to be able to amply blurb/review every submission, but in the end it felt like it would make this post too long and repetitive. So, I have highlighted those that stand out for me in some way in each category — sometimes because a piece is written particularly well, other times because it covers an unusual topic or takes it on in an unusual way — but also included the links for other worthy posts in each category.
Enjoy! If you can’t read them all today, bookmark the page and work your way through the rest over time.
Diane Shipley is a freelance writer obsessed with feminism, US TV, memoirs and pizza. She writes about those things and more at her blog, the imaginatively-named Diane Shipley Blogs (http://blog.dianeshipley.com) and is almost always on Twitter (username: @dianeshipley).
You’re intelligent, personable, and get good grades. It might look like higher education is a given.
But it isn’t. Not when you have a disabling illness. Then, making it to graduation could be more challenging than you ever imagined.
Last year, I tried to finish the degree I dropped when I got ill back in 1998. The disability services department at my new university contacted me the summer before I started my course, asking what extra help I would need.
I had never been a student with disabilities before, so I couldn’t anticipate all the challenges I might face. But the system for reporting those I was aware of seemed doomed to failure: a disability advisor emailed my department in the first week of the semester to advise them that I needed my seminars and lectures to be accessible. Inevitably, this was too late. One of my lectures was in a building with a lift that was almost always out of order, leaving me the choice of missing out or making myself ill. And my registration experience was disastrous.
Registration and enrolment were in two separate buildings nowhere near each other. As no buses ran in that direction, this meant a fifty-minute round trip on foot, well beyond what I could cope with. So I emailed the university to explain this, asking if I could register and enrol online, instead.
Here’s where I point out something that should be obvious but seems not to be: when disabled students express a preference, it shouldn’t be brushed aside in favour of what administrative staff would prefer. Being assertive can be very difficult, especially in situations where someone has power over you. Expressing one’s needs can also be embarrassing, as many long-term illnesses and disabilities are stigmatised. It’s an issue that deserves to be treated with sensitivity, but too often isn’t.
Instead of granting my request, a member of staff from registry services suggested I meet her late in the afternoon, instead. Because her address was at the end of her email, and was somewhere I could access by bus, I agreed. But when I went to her office at 5 PM on registration day, the shutters were closed. Tired, upset, and alone, I vented on Twitter: “I don’t think this university cares about disabled students.” Then I called my mum in tears and she offered to leave work and drive me to the building where registration was taking place. I finally made it and explained the mix-up to one of the staff, who said someone there wanted to speak to me.
The head of registry services strode over and introduced herself, a stern expression on her face. She then shouted that I couldn’t say what I liked on Twitter without giving them “right of reply” and that the university did care about disabled students. “I’m fully conversant in equality law,” she snapped. When I mentioned the mix-up over where I was registering, she said that perhaps I should read emails more carefully in future.
She wasn’t wrong: I could have double-checked. But in my defence, starting university was an overwhelming undertaking, and confusion and anxiety are big parts of my illnesses. I had also made the mistake of assuming that no-one would suggest we meet somewhere I had specifically said I couldn’t access.
I was finally able to register but because of the delay, I couldn’t get into the student intranet until two days later, so the seminars I wanted to sign up for were full. This meant that instead of organizing them at times to suit my illness, I had to take whatever was left. When I contacted my departmental disability liaison officer to ask if I could be squeezed into more convenient seminars for a couple of subjects, he demurred, and I got the impression he thought I was trying it on. I didn’t have the energy to argue that this seemingly small issue was essential to the management of my illness.
As I thought I would, I struggled with my schedule. Ten hours of class time isn’t much, but I hadn’t counted on the extra time I’d need to walk to lectures (and then sit down and catch my breath). In retrospect, I needed to take taxis to my classes. But I was reluctant to organise this because one of the disability support staff told me that some taxi drivers were “funny” about short journeys.
But my biggest challenge was the fire alarms, which went off once or twice a week. We would traipse out of the classroom, walk down three or four fights of stairs, stand around for ten minutes, and then go back up again. I had no idea what disabled students were supposed to do, and didn’t know who to ask, so I just struggled on, my muscles spasming from pain and stress.
I know what some people will think: maybe I was too ill to be at university in the first place. But I had a good reason for attempting it: money. In England, if you’re on a full-time course, you are entitled to loans, grants, and bursaries, which add up to (just about) enough to live on. A part-time student is only entitled to £225 a year. So I took a risk.
It’s a risk that failed. Although I could cope academically, physically I was falling apart. After five weeks, I suffered a severe stress-induced relapse and the university recommended I take a leave of absence. This meant I wouldn’t have to reapply if I felt well enough to return, but I wouldn’t be entitled to student finance or disability benefits during this time, either. I only scraped by thanks to my overdraft, a little writing work, and my supportive parents.
This summer, I had to decide whether or to go back. I decided against it. I didn’t feel well, and I didn’t feel welcome.
I don’t think my experience is unique: I suspect it is more common than universities realize. The way I was treated is part of a much larger problem: how we, as a society, view people with disabilities. We need to stop being surprised when someone has special needs, and there needs to be a socially acceptable way of saying “I can’t do that,” or “I need more help”, especially in educational institutions and the workplace.
Policies like the British government’s plan to reduce the number of people claiming disability benefits (without regard for the number of people with disabilities) perpetuate the sadly still prevalent belief that those of us who have disabling illnesses which are not terminal or immediately visible are lazy, when nothing could be further from the truth.
The fact is, students with disabilities need better support. An attempt to understand and cater to students’ individual needs rather than just paying lip service to the idea of equality would be an excellent start.
Readers beware! Not every link is a guaranteed trip to a safe space, and the commentary is not necessarily the opinions of myself or others here at FWD/Forward, but have been included to provide you with a variety of reading that is possibly relevant to your interests (or perhaps to mine). The comments in the blog posts or mainstream news articles you will find below may or may not be triggering to various -isms, and so I would caution you, gentle readers, to proceed with the greatest of caution as you click through away from this page.
Yahoo! News: Nurse error left man brain-damaged
Mr Merrett was aware of the mistake that had been made before he lost consciousness, unable to speak. He can be heard on the film urgently clicking his tongue as a warning.
Ms Aylward tried to resuscitate him but it took 21 minutes for the machine to be restarted by paramedics, leaving Mr Merrett with serious brain damage. He had been nursed at home since 2002 after a road accident left him paralysed from the neck down.
In a strange land (sent in by reader Deborah Russell): The slow reveal
That’s one of the things I like about this book. It doesn’t try to pretend that illness is easy, that everyone can just take the pills and be happy. Kate de Goldi’s characters cope, but there are costs for each of them too. Above all, there are costs for Francie. She has found a way of living, a way of managing, a way of being… content, even if not happy per se. But there are costs. Fancie is no super-crip. She’s just an ordinary woman, who copes as best she can with the way her life has turned out.
The Living Artist (sent in by Heather Freeman): Withdrawal
I see my doctor once a month for a new prescription, because she won’t give me one with refills. (To be honest, I’m unclear if this is her policy, the hospital’s policy, or state law. My impression is that it’s the hospital.)
Last month the one person in her office who knows how to work the computer was out, so I had to have my husband call in to make my next appointment. By the time he got through to the office (which is incrediblyhard to reach by phone) their next available appointment was 6 weeks after the last one. He pointed out that I would run out of my medication before then, and they said they’d see what they could do. Of course we then heard nothing.
Since I have FSD, I have vested interest in learning more about it – what it is, what treatments are or aren’t available, how it impacts individuals’ lives (if at all,) etc. It’s not just reading though – I’ve talked to and received feedback from women who themselves have FSD in one or more forms. I’m especially interested in how FSD is perceived and what people say about it! It’s meta, and its fascinating. So what are people saying about it? When I read about FSD, I notice a few familiar themes pop up repeatedly…
HealthCanal.com: Controversial Law Improves Care for Serious Mental Illness
Currently 45 states have involuntary outpatient commitment laws, but only a handful are designed with prevention in mind. Kendra’s Law is intended to identify and address at-risk behavior that may trigger the need for hospitalization.
Amid criticism that the law may violate patient rights by mandating treatment, the New York State Office of Mental Health commissioned an independent evaluation of the implementation and effectiveness of the program.
Gentle Readers! Always feel free to send your links for a Recommended Reading to recreading [at] disabledfeminists [dot] com. Be sure to include how you would like to be credited for your great find, and a link to any website you want affiliated with yourself.
This is the third in a three-part post about a talk given by the Chief Justice of the Supreme Court of Canada, The Right Honourable Beverley McLachlin, about the interactions between people who are mentally ill (her term) and the justice system of Canada. Part 1 briefly discussed the history of the treatment of people with mental illness in Canada, and then described the current situation with regards to the criminal court system. Part 2 discussed the interactions between people with a mental illness and the civil courts. Part 3 will discuss the mentally ill as victims of the justice system.
This post will discuss violence against people with disabilities.
All quotes are from my notes and are not verbatim.
Many Canadians will be familiar with several stories of people diagnosed with a mental health condition being killed by police officers. Byron DeBassige, 28, was shot and killed by police officers in February 2008 (Toronto). Howard Hyde, 45, was tasered and killed by police officers in November 2007 (Halifax). Ashley Smith, 19, committed suicide in jail while prison guards watched in October 2007 (Kitchener). Reyal Jensen Jardine-Douglas, 25, was shot and killed by police officers in August 2010 (Toronto). While Robert Dziekanski does not appear to have had a mental illness, his “irrational” behaviour after having been detained in the airport for 10 hours is the reason police officers gave for tasering him multiple times and leaving him to die in October 2007 (Vancouver).
The Chief Justice specifically focused on the case of Byron DeBassige, reading from the Toronto Star article I linked above. She went on to state that she believes that the police wouldn’t have shot DeBassige over two lemons and a knife had they known he was ill. In light of the other cases I’ve linked to, I don’t agree with her – in several of those cases the police were firmly and repeatedly told the person they killed was mentally ill. I don’t believe police officers as a whole have risen above the ableist prejudices that lead to psychophobia (fear of people with mental health conditions), simply because there’s been no real attempt in Canada to combat it.1
The Chief Justice went on to discuss how prejudice and fear can affect people with a mental illness: “I’d like to shift the focus to millions of mentally ill people who do not break the criminal law, who remain untreated or inadequately treated, and at liberty. Too often they are simply victims: Victims of discrimination, ignorance, societal inefficiency, and sometimes of violence that too often ends with their death.”
As a woman with a diagnosed mental health condition, I’m twice as likely as my non-disabled counterparts to be the victim of a violent crime, including rape. [Source is PDF] I’m also significantly less likely to be violent than my counterparts. And yet, even on FWD (in comments that are unapproved), it’s not rare for people to equate my diagnosis with abuse. It’s not uncommon for me to be sitting in a classroom of people who know that I campaign for disability rights and have talked a lot about the prejudices that face people with mental health conditions and have my classmates talk about how “crazy” people are violent. After learning I was going to this talk, one of my classmates told me that, should she ever murder someone, she’d claim temporary insanity and just spend a few months in care and then be released. All I could think of was Ashley Smith, who threw crab apples at the postman and died in jail.
The stark truth is too often we discriminate against the ill. We pass them lying on the street but ignore pleas for housing, reluctant to give them jobs even when they’ve struggled valiantly to overcome their illness. We marganilise them.
We need to know more if we’re going to avoid the specter of mentally ill as victims. Related to this is the lack of social coordination on behalf of the mentally ill. All who play a role in an ill person’s life must find ways to communicate and talk to each other. They fall through the cracks. There must be better communication between agencies if we are to prevent more mentally ill people from becoming victims.
This last quote is, in sum, why I felt a lot of frustration with this talk. Throughout, the Chief Justice talked about agencies, she talked about police officers, parole officers, and judges, she talked about what people can do. At no point did she quote an actual person with a mental illness. At no point did she suggest that people talk to those of us who have a mental health condition, and find out what we want and need. At no point did she talk about attempts by the justice system to include people with mental health conditions on tribunals or in the discussions about how the justice system can do better on this issue. Nothing about us without us really shouldn’t be a daring concept, but it seems it is.
Despite all of my complaining, I actually did enjoy this talk. It’s not very often that people admit that prejudice and fear play a strong part in the way people with mental illnesses are treated, by society in general and the justice system in particular. As a Canadian, it makes me happy that the Chief Justice of the Supreme Court is speaking about this, because her authority lends weight to what she’s speaking of, and because I know the Supreme Court is aware of the issues that she’s raising. I also appreciate that she takes the time to speak on this issue often. I was recently emailed the text of a similar talk she gave in 2005. Making law students and lawyers (as well as the general public) aware of these issues may help prevent future cases like Ashley Smith’s suicide.
I would obviously like that more awareness of these issues was addressed in a helpful and thoughtful manner in the newspapers, in classrooms, and on the internet. Chief Justice McLachlin is doing good work, and I’m very glad of the opportunity presented by Dalhousie University to see her talk in person.
- There is, however, an attempt to point out that “mental illness costs Canadians $51 Billion a year“. I don’t think we battle prejudice against mental health conditions by talking about how much it costs, especially since I think it would be more accurate to say “discrimination and stigma related to mental health conditions costs the economy $51 Billion a year”, but what do I know? I’m just a crazy lady. ↩
If you haven’t been following my tale of woe on my personal journal, I have a terrible ear infection and can’t hear out of either ear. But now I have antibiotics to treat the middle ear infection, so any day now I should be able to hear something. I hope. (Woe.)
Today’s Recommend Reading is not entirely about the budget cuts and slashing of disability-related funding, but a lot of it is. I really recommend following Where’s the Benefit? for more in-depth discussion of these cuts.
Data from Family Resources Survey and the National Equalities Panel found that:
· 75% of disabled women and 70% of disabled men are already at the bottom end of Britain’s income distribution scale living in poverty.
· A tenth of disabled woman have incomes below £31 per week and a tenth of disabled men have incomes below £59 per week including earned income and benefits.
· Under the coalition government’s economy drive disabled people are set to lose at least £140 per month through direct cuts to disability benefits (initially devised to pay the extra costs of being disabled) alone.
· The Tories have threatened to remove our DLA saying that the number of claimants must be reduced by one-fifth.
rich at arbitrary constant: Osborne: Welfare cheats are “like burglars”
I’ll start by reminding people that most disability benefits are not work- or sickness-related. For example, Disability Living Allowance (DLA) helps with the additional costs of disability, primarily related to personal care. It is for people under 65, though you can continue to be in receipt of DLA over the age of 65 if you have it before you are 65. (Attendance Allowance is the equivalent for people over 65. Both are non-means tested.)
And rather than pejorative statements that play to Osborne’s prejudices, let’s introduce some facts.
CripChick’s Blog: thoughts on national coming out day
today is national coming out day. as i think about what this means for me as someone who is so out, yet so so closeted, friends and i are on a conference call going over notes from a recent summit where self advocates with developmental disabilities worked to create policy recommendations on community living. (sadly this is needed because too many providers use gov’t dollars set aside for community living to do things that are really hurtful to disabled people).
we asked people to talk about what group homes and other residential facilities for disabled people often look like. this is what the notes reflected.
Kali at Brilliant Mind, Broken Body: Disability services – hit or miss
Now, one of the interesting things I have to point out here when talking about how my law school handles my disability is that my law school is semi-autonomous from the greater university. It creates an…interesting…situation for disability accomodations. Not bad entirely; it’s had pros and cons for me. The way getting accomodations works for me is like this: I bring my doctor’s letter to the law school’s disability coordinator, who we’ll call W. The disability coordinator faxes the letter over to the university’s disability resources center. ( I officially have a file there and a counselor, but I’ve only really interacted with her over one issue.) The disability resources center sends back its evaluation of what accomodations I’m to be accorded. W and the law school student resources secretary then arrange for the accommodations.
Corina Becker at No Stereotypes Here: Adults Count Autism Survey
Not long ago, I heard about a survey being done by the Redpath Centre on the needs of Autistic Adults. Looking at the website, I see that the purpose of the survey is to gather materials in order to advocate for better services. Curious and always willing to help out, I emailed them, and received this reply.
In the news:
UK: The Guardian: Disabled people among the hardest hit by spending review: Osborne limits employment support allowance to one year. “After one year, people with assets, savings or partners who work will no longer receive benefits. Single people with no assets may be able to qualify for a means-tested safety net, but everyone else will have to manage on their husband or wife’s salary – no matter how low it may be – or dip into any private savings they may have.”
UK: The Guardian: A whirlwind of hatred against the disabled: Just how far are we, as a society, prepared to let violent crime against the disabled spiral upwards? [Trigger Warning for discussions of violence against disabled people, including sexualised violence] “The statistics should shame us all. Nine out of 10 people with learning difficulties have suffered bullying or harassment.”
Some of our readers may be aware that our very own Annaham is, among many other things, a talented cartoonist who explores disability in her cartoons.
Writing about her experiences as an artist, Annaham says:
The fact that I consider myself a “disabled feminist cartoonist” may seem, to some, to be an almost hyperbolic adoption of the worst aspects of identity politics; the politics of identity, ability, and (mis)representation, however, are central to my work. In this fairly short comic, I want to put forth the idea that a condition such as fibromyalgia (which I have), and the theoretical perspective that it and similar conditions deserve, can be effectively represented via an explicitly visual form. Conditions such as fibromyalgia, chronic fatigue syndrome, multiple chemical sensitivity, lupus and certain types of arthritis are all “invisible” illnesses which can be disabling. As scholar Susan Wendell contends, however, those with invisible and disabling or potentially disabling conditions are subjected to constant scrutiny, doubt, and disbelief from those around them. There is no question that art is a powerful medium; my hope is that this project succeeds in both making the “invisible” illness experience visible via the form of comics, and in addressing the challenges facing a theory of invisible illness.
The zine ‘When Language Runs Dry’ recently published her piece ‘Invisibly Ill.’ Here’s a sample panel, and if you want more, you can pick up a copy all your very own!
Here’s some more information about what’s in this edition of ‘When Language Runs Dry’:
Chronic pain is defined as pain that persists for more than six months. It is often mysterious and goes undiagnosed, but can stem from injury, illness, surgical complications, or can be an inherited condition. Because it is a condition that is invisible, pain often goes without treatment or validation. The chronic pain experience is not just about the physical sensations, but also has serious emotional and social implications.
Finding good information and meaningful dialog about chronic pain can be challenging. Many of the resources out there are very clinical, too general, or are written from outside the pain experience. There are few voices by folks with chronic pain about their struggles and how they keep living as full a life as possible. This zine attempts to begin to fill the empty space with a diversity of voices telling their stories. We hope that by publishing these essays people will feel a greater sense of permission to speak out. Further, we hope to create more community for those with chronic pain and their allies.
Hot off the presses, the third issue of this edited collection includes 4 new essays, a 15 page comic essay, contributor bios and reading/resource list. Themes include parenting with chronic pain, invisibility and chronic pain, and some ways we’ve found to survive and thrive in the face of ongoing illness.
Last time, we talked about three main areas of a policy where things can go wrong: drafting a written policy to match the envisioned goal or mission of the policy (articulation), creating an administration or structure to carry out the policy (implementation), and making sure that people are actually following the policy (enforcement). These three areas are extremely complicated when everyone involved has a common view of what the policy is trying to achieve. When there’s no clear agreement on the intended goal of the policy, things get even more confusing. For an example of that kind of confusion, let’s look at a recent policy proposal in New York State to prohibit the use of food stamps to buy soda. To understand what’s really going on here, we’ll need to take a closer look at a couple of things: what the intended goal and policy of the food stamp program is, what the proposed policy is, and how the two interact.
Let’s start with food stamps. The United States food stamp program started in 1939. Although it currently functions as an anti-poverty program, it started as a subsidy for American farmers administered by the U.S. Department of Agriculture as a way to help American food producers by making it easier for consumers to buy their goods. Originally, consumers bought coupons that could be used for food and were issued additional coupons that could be used for “surplus” food – food that was being produced but not purchased because of the problems in the economy. Even now, changes to the food stamp program take place in congressional “Farm Bills” that primarily focus on agricultural issues.
The food stamp program is also one of the primary anti-poverty programs administered by the federal government. Over time, eligibility for the stamps has been narrowed to include only low-income individuals and families. Unlike some other anti-poverty programs, eligibility is based on more than just an individual’s or household’s income and includes a calculation for how much they are paying for housing costs to determine the amount of income considered available for purchasing food. (You can go through the pre-screening on the federal food stamp website if you want to estimate your eligibility – if you’re from outside the U.S., just pick a random state.)
Although a person is approved for a certain dollar amount of food stamps per month, the benefit is not given to them as cash. Instead, they get that dollar amount of “food stamps” on an electronic debit card that can be spent only on food — it can’t be used for rent, gas money, diapers, clothing, vitamins, medicine, toiletries, or any other non-food items. There are also restrictions on the food that can be bought with food stamps: no hot or pre-prepared food (like a deli sandwich) and no alcohol or cigarettes. These rules get somewhat complicated – pumpkins can be bought if they’re edible, but not if they’re a decorative gourd.
So, given that framework, we can now understand what New York state is proposing: a demonstration project for New York City that would “bar the use of food stamps to buy beverages that contain more sugar than substance — that is, beverages with low nutritional value that contain more than 10 calories per eight-ounce serving. The policy would not apply to milk, milk substitutes (like soy milk, rice milk or powdered milk) or fruit juices without added sugar.” And the stated goal of the policy: “bring[ing] us closer to stemming the wave of obesity and diabetes in New York.”
The question of how much and whether these drinks do or do not contribute to an increase in diabetes and obesity (obesity which may or may not be a health issue) is a whole other question – for the purposes of this analysis, let’s just pretend we live in a world where that connection has actually been proven. Even if we accept that very tenuous connection, a big problem with this proposed policy is both overbroad and underbroad. Policies that are overbroad change more things than they need to in order to reach their intended goal. This policy is overbroad because there are surely people who use food stamps to buy some of the prohibited drinks who are neither obese nor have diabetes – so the policy would be prohibit purchases that do not contribute to the harm we are trying to prevent. It is underbroad partly because of what’s excluded – the sugar in fruit juice or chocolate milk is just as sugary as the sugar in soda. But it’s also underbroad because there are surely people purchasing these drinks with their own money – earned, inherited, or otherwise gotten not through food stamps – to buy these drinks that will contribute to their obesity and/or diabetes.
If we were this convinced that these sugary drinks were the root cause of an obesity epidemic, there would be a lot more effective ways to target this policy – by banning the sale of those drinks in the state, to anyone, using any method of payment. Or selling them only to adults. But this isn’t what’s being proposed. Partly because the soda companies would create a huge stink in protest and partly because the population would complain that they have the right to spend their money how they like and would likely vote out any politician that made such a policy. Instead, this is a “demonstration project” that New York promises the “effects [of which] would be rigorously evaluated.” This is really an experiment to find out if limiting purchases of these drinks makes any difference at all, either to the amount of sodas sold or any eventual health outcomes. And it’s a pretty bad experiment, because even with the tight control we have over how poor people spend their money, they could still buy a Coke with their non-food stamp income.
So what’s the real goal of this proposed food stamp policy? To further restrict the purchasing power of people low-income enough to receive food stamps in order to find out if this idea they have has any effect at all on what they want to try to change: the health of the overall population. And this kind of implementation is not at all unusual – these half-baked policy ideas that don’t have a firm scientific underpinning for their presumed causal effect are often tested out on vulnerable populations that don’t have the political power to resist them. If this was implemented on the entire population of New York City or state, there would be a giant backlash. But the poor aren’t nearly as well organized or politically active, so it’s safe to practice on them, for the good of everyone’s overall “health.”
- New York Times story on the proposed ban
- National Public Radio story on the proposed ban
- New York Times editorial from the health commissioners of New York City and state discussing the proposal
- Marion Nestle discusses the proposal
- US Department of Agriculture FAQ about the food stamp program
- A New York Times article on the increasing number of people who have food stamps as their only income