Category Archives: policy

Dear Imprudence: Getting It Right! (For Once!)

s.e. smith recently passed on a question from a Dear Prudence column (3rd question down) that, well, actually gets things right. We were both pretty surprised! The question asked is shockingly similar to my own situation, but I swear I didn’t write in to ask it. The questioner writes:

I work in a social-services-related field and have bipolar disorder. I am open and honest about my diagnosis. … I have been having issues with one of our interns, who is in her mid-20s and pursuing a master’s degree in clinical psychology. On the surface, she is very pleasant. The problem is, anytime she and I disagree about something (which is often, because apparently she knows everything and I know nothing), she rolls her eyes, waves her hand, and declares that I am “just bipolar.” This is alarming to me because she intends to work with such populations, and though I can take it without becoming suicidal, many bipolar people can’t. Part of me wants to simply ignore her, but when I do, she continually asks me, “What’s wrong?” She is probably going to be with us for another year, and I want some peace and a little less condescension when I go to work.

Hey! I have bipolar, and I work in a social-services-related field! The difference is, if I ever encountered anyone who put a hand in my face and dismissed me as “just bipolar,” I would have a written warning in their file before they could even blink. This is not only because I don’t tolerate that kind of flip dismissal, but also because the attitudes of social services staff towards people with mental illness can have an enormous impact on the quality and effectiveness of services delivered to people with mental illness. It is damaging to the agency as a whole to have those attitudes expressed to clients by agency staff and it is an amazing disservice to approach people who need social services with such a dismissive, discriminatory, and oppressive attitude. To her credit, Prudence clearly sees this aspect of the issue:

Since she’s an intern and plans to go into your field, take seriously your duties to guide this obnoxious young person… If she doesn’t stop, or escalates her rude and dismissive behavior, keep your cool and explain to the higher-ups that while “Brittany” may have some promising qualities, she needs some serious attention paid to how she treats others.

This is exactly right. Social service agencies need to ensure that staff do not transmit these attitudes to agency clients. Unforutnately, based on my experience, it is not uncommon to encounter agency staff with these kinds of attitudes, primarily because agencies tend to provide little training or guidance to staff in dealing with clients with mental illness. Staff are then forced to rely on the (mis)information about mental health conditions they’ve accumulated through their lives to shape their opinions and actions, which can often lead to attitudes and behaviors like the one discussed by the questioner.

I’ve found that most people have a vague conception of what depression is and that it could be connected to suicide, but have little conception of how depression can affect a client’s everyday life. This is especially problematic when agency staff expectations for client’s behavior doesn’t account for the effects of their depression. For example, we often need to gather and review a client’s entire medical record to evaluate the merits of a potential disability claim. This can be a very complicated process – submitting medical records requests to every medical provider from which the client has ever received treatment, wrangling with records departments who want to charge exorbitant fees, following up with records departments who ignore, misplace, or deny records requests. Understanding the effects of depression is key for agency staff in how they instruct clients to gather these records, how they respond if or when a client fails to follow through, and the extent of assistance the staffer is willing to provide the client in this task. I’ve found that for a client with depression, an instruction to “gather all your medical records for us to review” can be so overwhelming and intimidating that they are unable to manage the task. Staff are likely to perceive this client as “not really committed to their case” and insufficiently willing to cooperate with the agency in pursuing their goals. This can mean the difference between providing the assistance a client needs to succeed and closing the case because the client “didn’t really want this benefit.”

Beyond depression, there is virtually no understanding of the variety of mental health disorders or the impact they can have on an individual’s functioning and ability to participate in their own advocacy. Schizophrenia and dissociative identity disorder are conflated and often ridiculed. Disorders on the autistic spectrum are not understood at all. Post Traumatic Stress Disorder is often dismissed as an overly sensitive reaction to trauma that “everyone has in their lives.”

This lack of understanding means that staff are completely unable to provide reasonable accommodations to clients with mental health disorders. Which in turn means that clients with mental illness, overall as a group, receive less effective and meaningful services from the agency as a whole. Which means that not only are agency resources more likely to benefit folks without mental health issues, but those expended on clients with mental illness are more likely to be wasted and not “land” effectively because they cannot effectively create the change the client is seeking. So, everybody loses.

The solution is more training, education, support, and guidance for agency staff on understanding these issues and providing effective services to this community. While attitudes like those of the intern in the question are unfortunate and disappointing, some of the blame has to be laid at the foot of the agency itself for failing to provide training, policies, and protocols to ensure staff are educated on these issues and know better. So while Prudie’s recognition that the intern’s attitude is fundamentally unacceptable and must be addressed if she hopes to continue in that area of work, I would go one step further and advise the questioner to push for training and support for all staff at her agency to ensure everyone has the information and tools they need to provide effective services to clients with mental illness.

Paying For The Recession: The AIDS Drug Assistance Program

Despite the attempts at sunny forecasts being made by commentators, it’s pretty clear that we are in a recession, that we have not hit bottom, and that things are not going to get better soon. In the United States, all of the indicators are pointing firmly toward ‘shit is bad, folks.’ The unemployment rate1 is high, housing starts are low, housing sales are soft, and I’m sure pretty much all of our readers in the US can point to economic indicators in their own communities; empty businesses, cuts to local services, and so forth. Outside of the US, things aren’t looking too rosy either.

The thing about recessions is that they tend to disproportionately impact the people who are least equipped to deal with them. People living in poverty and people who are vulnerable to poverty are the most likely to suffer and the government kicks those people while they are down by cutting social services rampantly. These ‘austerity measures’ are touted as a necessity, which I personally find hard to swallow when we are handing out billions of dollars to corporations, but personal repugnance aside, they just plain don’t make sense. Cutting social services results in more costs later. If the issue is expenses, the most cost effective thing to do is to actually boost funding to social services right now.

In recent days, the United States media has been exploding with stories on the AIDS Drug Assistance Program (ADAP). On average, it costs around $12,000 every year for a patient to take AIDS medications, and remember, that’s an average. Some patients pay far more, and this is just medications, setting aside the costs of regular doctor visits, lab testing, and other services needed by people with HIV/AIDS. Founded in 1987, ADAP serves around 170,000 people every year who need HIV/AIDS medications and can’t afford them.

This program is often touted as successful because it has a lot of enrollees, although there are undoubtedly people who need assistance and can’t get it because they don’t qualify. As always, when I look at programs like ADAP, I am glad that they exist because I think it’s better to provide some support than nothing at all, but I also find them highly inefficient; the approach to health care access in the United States really sucks, quite frankly, and one of the reasons it sucks is that it’s very wasteful and poorly organised. If the United States would see fit to implement any sort of nationalised health care, we could spend less money and provide care for all instead of having a bunch of stopgap programs like ADAP. It should be possible to provide access to everyone in this country who needs it, and the fact that this hasn’t been made a priority reflects very poorly on us.

But I digress.

As of today, 11 states have implemented waiting lists for their ADAP programs, because they have no choice, and many are also cutting benefits, kicking people out of ADAP because they cannot cover them. They are not getting enough money to provide assistance, at the same time that growing numbers of HIV/AIDS patients are becoming unemployed, just like the rest of society. So, even as the need is increasing, the funding is drying up.

I often encounter the attitude that HIV/AIDS are manageable, not deadly, ‘like in the old days.’ All you have to do is take some pills, and, yes, you have to do it for life, but at least HIV/AIDS isn’t a death sentence. Er, no. Don’t get me wrong. It is great that treatments for HIV/AIDS are improving and that more medications are available and that more patients are living longer, but we should not forget that there is some serious class privilege behind who gets the most advanced treatments and who does not.

Something a lot of people don’t seem to realise is that these medications are expensive and that not all people can afford them, and those who can cannot necessarily access them regularly. ‘Compliance’ with a drug regimen is a critical part of HIV/AIDS treatment, and when you have people on ADAP going off their medications, it’s not like they can just pay out of pocket until funding comes through again:

First, there was a monthlong wait to see a doctor. By that time, he says, “I had been without my medication for a month and a half, which is bad for a person [with] HIV.”

During that time, the virus started coming back, but he had to get in line behind 18 people who were on Montana’s list. He has slowly — month by month — been working his way to the top of it, even as it continues to grow.

This patient got lucky, comparatively. People kicked in to help and he got back on his medications, with help from a case manager who helped him apply directly to the drug assistance programs offered by most pharmaceutical companies. There are a lot of people relying on ADAP who don’t have this support network, may not be aware of drug assistance programs, have trouble seeing a social worker who could connect them with resources they could use to get their medications. Meanwhile, their viral loads climb while they wait for medication.

Here in California, where the disability rights movement and HIV/AIDS advocacy movement are strong and vocal, our ADAP program is fairly stable. We’ve identified it as a priority that we need to keep funding and we have specifically addressed the fact that patients should not be put on waiting lists, that it’s important to keep patients on their medications and to avoid denying aid to those who need it. Except prisoners, of course; California is cutting ADAP funding for prisoners. As I mentioned in my post on mentally ill youth in US prisons, prisoners are already routinely denied access to the medications they do have. I don’t think we need to go around making it even more difficult for prisoners to receive medical care, do we?

Elsewhere? ADAP is a mess, people are scrambling to prevent people from falling through the cracks, and an already inefficient model for delivering access to health services is getting increasingly more inefficient. Social workers are trying to help the individuals they come into contact with, which is great, but unfortunately it means that the forest is being neglected for the trees, and when you’re spending all your time helping individuals navigate the system so that they can get help, it’s hard to work on designing and implementing more effective policy. Meanwhile, other people have no help at all, and while helping some is better than none, I would rather that we reframe our approach and get services to all.

It’s good to see the media drawing attention to this issue, because I think that people need to digest information about how austerities work in small chunks. The media can’t just say ‘hey y’all, we have a really big problem with kicking poor folks while they’re down’ because it’s too big and people tune out. By profiling individual issues and humanising the results of financial cuts, the media can, perhaps, evoke some awareness and compassion, and get more people questioning austerities and getting angry about them. It’s harder to justify sweeping funding cuts when you have seen the faces of the people those cuts will hurt.

Is that enough, though? A lot of people have spoken out very strongly against austerities, and so far it seems like the government is ignoring the will of the people along with the suggestions of some economists and charging forward with cuts to social services. I think that this is a grave mistake, and it’s also a fatal one for a lot of people in the United States.

I can live through the recession because I have a safety net. But that’s not enough. I want everyone else to live through it too.

  1. Notoriously unreliable because it does not include people who have stopped looking for work.

I’m Disabled and I Vote

A person in a powerchair wearing a shirt that says 'feel the power of the disability vote.' Photo taken at a protest in California.

(Photo by Flickr user Steve Rhodes, used under a Creative Commons license.)

Here in the United States, we are in the midst of a midterm election cycle, and given that campaigning for Presidential elections basically starts two years in advance, we are about to start ramping up for the 2012 Presidential election, which looks like it is going to be a doozy.

I have voted in every single US election since I reached the age for voting eligibility. I’ve voted on traditional paper ballots, hanging chads and all. I’ve voted on scantron ballots. These days, I vote via permanent absentee ballot:

California Ballot for the June 2010 primary election

I’ve always been mesmerised by the electoral process. Growing up, our house was used as the polling place for the community, and my father always let me take the day off from school to watch the voting. I clamored to turn on the radio for election results like other children screamed for ice cream. I’m somewhat more cynical about elections, voting, and enfranchisement these days.

As we approach the 20th anniversary of the Americans With Disabilities Act (ADA), signed into law on 26 July, 1990, we are still dealing with inaccessible polling places. And we are still dealing with disabled politicians who veto bills designed to increase polling place accessibility:

Last September, the governor [David Paterson of New York], who himself has a disability, shocked many when he vetoed a group of disability bills mostly centered on rights provided through the federal Americans with Disabilities Act, including voting place access.

This article goes on to discuss the voting access aspects of the legislation Paterson vetoed in more detail, pointing out that many of the claims he made about the legislation were false and illustrating that funds are made federally available to address accessibility issues at polling places. There is no reason for a polling place to be inaccessible, ever, and it is horrific that the Governor felt it was appropriate to veto a bill that included, among other things, polling place accessibility.

Voting matters. We have a right to participate in the democratic process, and this right is routinely denied to us. Not just here in the United States. I’m sure many FWD readers remember jady_lady’s post about being disenfranchised in the recent UK election:

It was only whilst walking home with my partner that we compared notes. It appeared that my template had been placed fairly close to the left hand edge of the form, and my partner’s had been nearer the middle of the form. We phoned a friend and asked where the boxes appear on the ballot paper and were told that they are down the right hand side.

It would therefore appear that both our ballot papers are spoilt and we haven’t had a vote in this very important election.

When I was a young child eagerly watching everyone vote, it filled me with a sense that there was some justice in the world. People could be angry, they could be unhappy with the political situation, and they could express themselves at the polls. I remember the first election I voted in vividly. I remember reading my voter’s guide with care and showing up at the polling place precisely at 7:00 AM so I could vote as soon as it was physically possible, I remember being handed my ballot and going into the stall and carefully using the stylus to punch out my vote, I remember slipping my ballot into the protective cover to protect the confidentiality of my vote, handing it to the poll worker and watching her drop it into the lockbox with the other ballots. I remember eagerly watching as results rolled in, looking at the county results and thinking ‘one of these votes was mine.

The thought that anyone would be denied that right and that experience makes me indescribably furious. Actively working to deny people the right to vote is nothing short of repugnant. So is denying people the right to vote in confidentiality; a polling place is not ‘accessible’ if voters are required to disclose their votes to a poll worker to get their ballots cast. It is not ‘accessible’ if the only wheelchair-accessible space to vote is a table in the middle of the room where everyone can see.

An estimated 20% of the population of the United States is disabled. That’s a pretty big percentage of the electorate. Given that we are not actually a hivemind, it’s safe to assume that we have some very diverse views on politics and that those of us who do vote probably vote very differently. Those of us who can’t vote would vote differently as well, if they were given an opportunity to do so. It’s important to make sure that these voices are heard, to ensure that votes are cast not only by people who can walk up the stairs to a polling place, stand at a polling booth, and interact with a touchscreen or paper ballot, but by everyone.

There is absolutely no reason to keep polling places inaccessible, unless, of course, you are afraid of the power of the disability vote.

Florida Court Ruling: Community-based Services, Not Institutionalisation

In 2007, Florida resident Michele Haddad was involved in a motorcycle accident with a drunk driver. She incurred a spinal cord injury that led to quadriplegia, and lived at home until she lost her caregiver and Medicaid informed her that she would only qualify for the services she needed if she spent 60 days in an institution. Aside from making absolutely no sense, as often seems to be the case with Medicaid bureaucracy, this barrier to accessing care was also highly discriminatory.

Haddad sued, arguing that she would suffer ‘irreparable harm‘ by being compelled to enter a nursing home, and the court agreed. The State of Florida was ordered to provide her with the community-based services she requested and was entitled to. Haddad will be getting a caregiver and staying at home, and we can chalk down another victory for disability rights. This is huge and I am really pleased by the positive outcome in this case. Haddad wanted to stay at home, she should have been allowed to stay at home, and it is heartening to read that the court ruled on the side of justice, bodily autonomy, and independence in this case.

The United States Government was also involved in the case, arguing on Haddad’s side. The Justice Department is currently fighting several discrimination cases, many of which build on the landmark Olmstead vs L. C. case that cleared the courts 11 years ago. Speaking about the Haddad case, Thomas E. Perez, Assistant Attorney General for the Civil Rights Division, said:

In the Olmstead case, the court recognized that the unnecessary segregation of individuals with disabilities stigmatizes those individuals as unworthy of participation in community life. By supporting Ms. Haddad in this case, we seek to ensure that individuals with disabilities can receive services in the most integrated setting appropriate, where they can participate in their communities, interact with individuals who do not have disabilities, and make their own day to day choices. (source)

I’m excited to learn that the Department of Justice is cracking down on discrimination and is specifically selecting cases that will promote full integration into society for people with disabilities. As I discussed a few weeks ago, passing antidiscrimination laws and winning victories in court isn’t enough to put a stop to discrimination and ableism, or to the social attitudes that allow for the dehumanisation and abuse of people with disabilities, but these cases do make a difference, and the direct involvement of the government shows that there is a genuine desire to address disability discrimination and to fight it.

Forced institutionalisation, as almost happened to Michele Haddad, has a long and very sordid history in this country. A common problem that I encounter in discussions about it is that it is not always recognised as such. The Haddad case seems fairly clear-cut: She clearly stated that she wanted to stay at home and she was told that she would lose services if she didn’t enter an institution. That sounds forced to me, and it sounded forced to the court, and most of the people discussing the case seem to agree.

But other cases are less clear. A lot of people with disabilities are not provided with information they could use to make choices independently. They are pressured by family members or care providers. Someone in a situation similar to Haddad’s might not be aware that home care was an option. All it would take is being whisked into an institution from the time of an accident and deprived of access to information suggesting that there are alternate modes of care. We see the same thing with decisions about medical care, where people aren’t provided with information and options, but simply told what to do.

‘Forced’ is a slippery word and it is not uncommon for people who want to deny that forced institutionalisation happens to find ways to weasel out of confronting it. After all, if you don’t say the word, it’s not happening, right? This persistent denial is one of the things that makes it so difficult for us to confront the real-world consequences of ableism. If we can’t get people to talk about the fact that forced institutionalisation happens, we can’t get people to talk about why it happens and we can’t get people to fight it.

Forced institutionalisation is not the only denial of rights and autonomy to people with disabilities that people think of as a thing of the past and believe doesn’t need to be addressed, countered, or fought any more. As a result, when we attempt to have conversations about these very real, very structural, and very present issues, we meet rhetoric like ‘oh, well, that doesn’t happen anymore, right? It sure was sad when it did, though.’

Michele Haddad, and thousands of people with disabilities all over the world, can personally testify that forced institutionalisation is not a thing of the past; here in California, for example, disabled activists are currently protesting cuts to In Home Support Services, a program that is vital for people receiving home care. Those funding cuts will result in institutionalisation for people currently receiving IHSS services.

Electronic Medical Records

Ezra Klein, a columnist in the Washington Post who focuses on United States health policy, recently wrote a post about electronic medical records, arguing that it is absurd that we have not yet adopted their use:

The fact that it’s 2010 and we’re having a conversation about how to move records from paper to computers is evidence of how screwed up the American health-care system is. In part, you’re dealing with the fractured incentives in the system: It’s good for patients and good for insurers if doctor’s offices spend money setting up computer systems, but it’s not necessarily going to make doctors any money, and the doctors themselves are frequently older and don’t want to learn a new system. That’s one reason why systems where the insurer and the provider are the same — think Veteran’s Affairs or Kaiser Permanente — tend to be ahead of the curve on electronic medical records.

But even if the economic analysis makes you sympathetic, the end result is still absurd. Imagine walking into a bank where clerks scrawled all your information in a giant ledger book. You’d run out and tweet all your friends about this hilarious bank from the 18th century. But we actually let people do this with our medical records, and then some of us die or have serious problems because our records get lost or our doctor’s handwriting is illegible.

I have a few different perspectives on medical records. First, I’ve generated a significant number of my own records and have been annoyed and frustrated many times by the lack of coordination in the care I’ve received and the seemingly endless need to provide the same information over and over again. It does seem anachronistic to me to rely almost entirely on handwritten documents to track care.

For another perspective, I often gather, review and interpret the records of others to support their applications for disability benefits. Benefits programs have definitions of “disability” that require complicated analysis and review of a person’s entire medical record to pick out enough information to decide if they meet whatever the disability standard is for that program. And for the low-income folks I work with, who have choppy and intermittent access to health care that is usually spread out among a staggering number of disconnected health care providers, the task of coercing and cajoling the various doctors and medical facilities to copy the handwritten notes in a medical file is often overwhelming and sometimes Sisyphean.

If people get past the initial barrier of gathering the records, there is often an issue of actually figuring out what the damn things say. I know it’s cliche to joke about doctor’s handwriting, but in my experience, those jokes are founded in page after page after page of incomprehensible scrawl with a seemingly infinite series of baffling abbreviations and large sections that we sometimes cannot decipher even after 6 of us (including a doctor and a nurse!) spend an hour trying to make it out. I create my own indexes and chronologies and piece together when each medication started and stopped and when a diagnosis was made.

Sometimes, our clients have gotten medical services through the Veteran’s Administration (VA). The VA mails me a CD-ROM that loads the entire medical file in chronological order in typed PDF format, entirely searchable. (With the proper HIPAA-compliant releases, of course, you can’t just get people’s records from the VA.) Periodically, around every 6 months, the system automatically generates a list of medications and diagnoses in the records. The CD has the medical imaging on it, so I can get one of my experts to look at it. It is such a big difference that we sometimes squabble over the cases with VA records because they’re so much easier to deal with.

On the other hand, there are obvious and significant privacy concerns. I do not want it to be easy for an employer, law enforcement, insurance companies, or really any person or entity to whom I haven’t given direct and explicit permission, to get hold of my medical records or to be able to send them in an email in the blink of an eye. And given the existing level of ableism and discrimination, that is certainly an issue with life and death consequences for some people with disabilities. I do not know whether it’s possible to safeguard medical information to the necessary level while still allowing the accessibility and coordination that make electronic medical records so appealing.

By 27 June, 2010.    policy   

Quick Hit: The Relationship Between Disability and Poverty, Part 1,293,495,594 in a continuing series

Did you know that being poor puts people at greater risk for disability? And that people with disabilities are more likely to be poor? And that there’s a very strong relationship between poverty and disability, the worst kind of vicious circle? Well, you probably do, especially because we talk about it a lot here, but here’s another study confirming that, from Wayne State University (bolding mine):

Dr. Bowen and Dr. Gonzalez said the study suggests that early socioeconomic conditions play a role in a person’s risk for disability that persists throughout the course of their life.

With much of the available literature on disability focused on the role of mid-life diseases, Dr. Bowen and Dr. Gonzalez took a unique life-course approach to the topic. “This study set out to determine if early life conditions contribute to the risk for developing a disability, and if so, what those risk factors are,” Dr. Gonzalez said.

The study utilized data from the Health and Retirement Study, a nationally representative study that followed more than 18,000 Americans 51 and older over the course of eight years. Using generalized linear latent and mixed-model commands for their statistical analysis, they examined the early-life parameters of parental education ranging from zero to 17 years, as well as the father’s occupation when the respondent was 16 years old. They factored in respondents’ social mobility — education, income and wealth — and health behaviors like smoking, drinking, exercising and body weight, throughout their lives, examining whether these factors mediated the effect of early life conditions. Analyses adjusted for the predisposition for certain forms of disability caused by characteristics such as age, gender, ethnicity and disease, and tracked the changes from baseline measurements over the course of the study.

Dr. Bowen and Dr. Gonzalez said the study suggests that early socioeconomic conditions play a role in a person’s risk for disability that persists throughout the course of their life.

Our research strengthens the argument that poor conditions during childhood can put you on a path of heightened risk for health problems,” said Dr. Bowen, now a patient-safety research fellow at James A. Haley Veterans Hospital in Tampa, Fla. “This isn’t to say that people who grow up with certain socioeconomic risk factors are going to be disabled, but it does provide evidence they will be at a disadvantage. This is most likely due to the lowered access to good nutrition and to important health information characteristic of people living in poverty.”

(Note: I can’t say I care for the implication that this is an education issue, which implies that it’s caused by volitional choices of people in poverty. I think it’s much more accurate to look at the constellation of socioeconomic factors which are strong determinants of health outcomes – stables and habitable affordable housing, financial and locational access to nutrition, and health care access – all of which are systemic issues, rather than individual actions. But the overall conclusions are, well, exactly what we already knew.)

Quick Hit: In US, Women Hit Hardest by Medical Debt

From a post at

According to a study (pdf) by the Commonwealth Fund, in 2007, 33 percent of working-age women, compared to 25 percent of men, faced medical bills that left them unable to pay for food, rent or heat; caused them to take out a mortgage on their home or take on credit card debt; or used up all their savings. Economists can’t agree on the precise number, but medical expenses account for somewhere between one third and two thirds of bankruptcies in the U.S. The damage isn’t just financial — once the debt is acquired, people are less likely to seek continued care.

This is a US only study, and is influenced in large part by the health care policies and costs here in the US, but I would not be surprised to find that whatever medical costs exist in a country fall disproportionately hard on women with disabilities.

The High Price of Industry: Cancer Villages in China

Starting in the 1990s, cancer rates in China began rising at an astounding rate. By 2007, cancer was accounting for one in five deaths in China. Similarly rapid increases in cancer rates are being seen in many other nations that are in the process of industrialising. Once considered a disease of the industrialised world, cancer is a growing problem in many nations that are struggling to gain a foothold in the global economy, as well as nations that are already well positioned, but still rapidly growing, like China.

A lot of news stories like to blame this on the acquisition of ‘Western habits’ and the ‘Western diet,’ or on smoking. These are, after all, convenient and popular targets for blame in the industrialised world as well. Other studies point to increased life expectancy that increases the chance that people will develop cancers simply by nature of living longer.

However, many of these stories ignore a major hidden contributor to rising cancer rates: environmental pollution.

Industrialising countries tend to have extremely high pollution rates. Environmental pollutants like heavy metals in the water have been clearly and substantively linked with cancer in numerous studies. Air, water, and soil pollution have been associated with a wide range of cancers including breast, liver, stomach, and lung cancers. Need evidence of pollution in China? There’s the Asian brown cloud, a proliferation of e-waste in China, and, of course, the pall cast by coal fired power plants, among many other things.

The tendency to attribute rising cancer rates to personal habits is one that places the responsibility for cancer solely on the individual. It’s easy to see why leaning towards ‘habits’ when it comes to attributing cancer rates is appealing, especially for policy makers and corporations, because it dodges the environmental link and any government or corporate-level responsibility. If cancer can be blamed on people, instead of institutions, it eliminates the need to address environmental causes of cancer, like pollutants that sicken people in their own communities, occupational hazards like workplace exposures to chemicals, and pollutants that disseminate and sicken people far from the source.

Regulation of pollution is erratic and sometimes very lax in rapidly industrialising countries, many of which have ‘economic zones’ of some form or another that are specifically designed to attract foreign companies with lax environmental, labour, and tax laws. Historically, people have presented this as some sort of flaw on the part of the populations and policymakers in these nations, implying that people are greedy for the potential profits of industrialisation, or not very knowledgeable about environmental issues, or that they are susceptible to bribery and thus can’t be trusted to make sound policy.

The truth is actually more complicated. Industrialising nations are subjected to immense pressure from industrialised nations to keep their regulations lax and incomplete and to meet demands from multinational companies to create ‘hospitable’ business climates. Many of these industrialised nations are former colonisers, adding another layer to the situation, and many of these corporations take a role in policymaking and governance which might surprise you, like using armed paramilitary forces to silence human rights advocates, Indigenous people, and communities. Many nations with international trade agreements are pressured by corporations that want to cut down on the costs of production by making products in countries with less stringent environmental and labour laws; look at the maquiladoras that line the United States-Mexico border for an example.

We need only look to BP operating in the United States to see how aggressively corporations resist environmental regulations in industrialised nations. In industrialising nations, which are largely regarded as low-hanging fruit for profit, that resistance is magnified, and corporations are much bolder about pressuring nations to refuse to adopt or change environmental regulations and violating those regulations when they are put in place. The same holds true with labour laws; many companies outsource production to nations with less stringent labour regulations to take advantage of the low, low costs of child and slave labour.

China represents a perfect storm. An industrialising nation with environmental regulations that are not keeping pace with pollution and the rise of vast factory towns where companies from all over the world expect to obtain a source of low-cost labour in a lax regulatory environment. Entire villages are sickening and dying as a result of environmental pollution (link via abcsoupspot). Reporting on China’s ‘cancer villages’ is suppressed, and it’s difficult to estimate the full extent of the phenomenon.

What’s happening in China is also happening in communities all over the world. As concerns about pollution rise and regulators tighten up, which they are doing in China, the pollution doesn’t disappear, it just moves. Sources of pollution such as industrial waste dumps and factories don’t just disappear. These things are still ‘needed.’ They simply move to other locations.

Those locations tend to be impoverished communities. Either they are forced on communities that are not given a choice, or they are actively welcomed by communities in dire need of jobs and income. As goes Xinglong, so goes Kettleman City. There is a long and ignominious history of shunting pollution on to poor communities that are the least equipped to deal with it, the least equipped to protest it, and the least likely to have infrastructures in place for early diagnosis and treatment of pollution-related illnesses. Many of these communities also have big minority populations, with environmental racism coming into play when it comes to deciding where polluting industries should be situated.

Environmental pollution is a global human rights issue, not a problem limited to tree huggers. With pollution comes much, much more than loss of biodiversity, extinction of endangered species, destruction of topsoil, and a host of other specifically environmental problems. Death and disease ride with environmental pollution, just as classism and racism perpetuate and determine which communities will be affected by it.

You Can’t Legislate Ableism Away

Of the most pervasive myths about anti-discrimination legislation is that the passage of the legislation somehow magically puts a stop to the discrimination, making everything hunky dory. This myth is most commonly believed by people who are not personally impacted by the discrimination that legislation was designed to address. It’s unfortunately a pretty easy myth to disprove.

Today, I decided to do some hunting around to illustrate a really pervasive form of discrimination that many people think isn’t a problem anymore: Denying access to people with service animals. There are a lot of misconceptions about service animals and what they do, and I’d recommend reading folks like Sharon at After Gadget, Melissa at Service Dogs: A Way of Life, or thetroubleis at The Trouble Is… if you’re interested in some service animal mythbusting.

In many regions of the world, there are laws in place that dictate access for service animals. Here in the United States, for example:

The service animal must be permitted to accompany the individual with a disability to all areas of the facility where customers are normally allowed to go. An individual with a service animal may not be segregated from other customers. (Commonly Asked Questions About Service Animals In Places of Business)

That seems pretty clear. How does that play out in practice?

Claire Crowell, 69, said she tried to go to the Chinatown restaurant on Wednesday with her dog, Vixen, but was told by a front desk worker she could not bring the dog into the building. (‘Restaurant Sorry For Banning Seeing Eye Dog‘)

Christopher Nigl, 34, said he wants a teacher at Washington Elementary School to lose her job and the principal punished because they reported him to police when he was walking his medical dog in front of the school while on his way to pick up his girlfriend’s child after school. (‘Man threatens lawsuit over service dog incident‘)

Our fair neighbours to the north also seem to be having trouble with the concept of accessibility:

Renee Brady, who has relied on her six-year-old golden retriever to be her eyes for the last five years, said she was taken aback when the manager of the restaurant at Main Street and Mountain Avenue told her on Wednesday she had to eat her food outside because of the dog.

Brady, who was with a co-worker at the time, said at first she thought the male manager didn’t realize her dog, Able, was a guide animal. But she quickly realized that wasn’t the case.

“I said he was a guide dog and he said ‘I know it’s a guide dog, but you’ll have to leave,’ ” she said in an interview Friday. (‘Fast-food eatery shoos blind woman’s guide dog‘)

Across the pond:

She said: “It was late and we were cold and wanted to get home, but when approached the lead hackney carriage for a lift the driver just said: “Four people but no dog.”

“We were flabbergasted, especially as he had disabled stickers on display.

“But when we pointed out that he would be breaking the law if he refused to take my guide dog he just said: “Take me to court.” (‘Blind groups welcome taxi driver’s ‘no guide dog’ fine‘)

Britain isn’t the only nation with a recent incident involving a guide dog and a taxi:

A Sydney cabbie has been fined for refusing to allow a guide dog and its high-profile owner – Disability Discrimination Commissioner Graeme Innes – into his vehicle.

Driver James Young has been fined $750 and ordered to pay $2,500 in costs after refusing to let Mr Innes and his labrador into his taxi in the Sydney CBD in April last year. (‘Paw form: cabbie fined for refusing guide dog‘)

In all of these cases, the dog was explicitly identified as a service animal. Most involved guide dogs, although Mr. Nigl’s dog was a psychiatric service animal. People persisted in discriminating in these incidents even after being informed that the dogs were service animals and that what they were doing was against the law.

I support anti-discrimination legislation, firmly. Without any legal framework at all for addressing discrimination, we would be facing an uphill battle. But what people who think that the problem ends with the legislation don’t seem to realise is that this is still a battle. We cannot wave a legislative gavel and whisk discrimination away; the legislation provides a means for fighting in court, which is important, but it does not end there. It sometimes empowers agencies to enforce it, but these agencies still have to do that, have to take reports on discrimination incidents, follow them up, and then use the enforcement tools at their command.

It does make inroads into social attitudes. High profile cases do attract attention and force people to start thinking about these issues when they might not otherwise, and the discussion about the necessity for such legislation highlights the fact that discrimination is an ongoing issue. However, more commonly, such laws are a reflection of a shift in social attitudes, with people gradually recognising that a.) Discrimination exists b.) It’s a problem and c.) Something should be done about it.

This is not a battle that can be fought and won in the legislature and the courts alone. It also needs to be fought in opinion editorials, on the streets, in popular culture, and in every other location that we have a chance to reach and access people. It’s not fair that we should have to advocate for the right to exist, for the right to go about our business like everyone else, but there it is. Policy supports this fight, but let no one make the mistake of thinking that policy wraps up the problem and allows them to move on to other things. Existing is still a political act, whether or not there’s a law that says it’s not ok to discriminate.

This Is Not Education: Abuse of Autistic Students in Pennsylvania

Content warning: This post contains discussions about abuse of people with disabilities, including physical assault and the use of restraints.

Last week, a major civil rights lawsuit was settled in Pennsylvania when seven families agreed to accept five million United States Dollars to resolve a case they filed against a teacher and her superiors, arguing that she abused the students in her care and her superiors did not take adequate steps to address it. It is the largest case of its kind in history in Pennsylvania, and one of the largest in US history. The teacher has already served six weeks for reckless endangerment; the question here isn’t whether she abused her students or not, but why the district failed to do anything about it.

These students were in elementary school. They were restrained to chairs using duct tape and bungee cords. The teacher stomped on the insoles of their feet, slapped them, pinched them, and pulled their hair. These nonverbal students apparently weren’t provided with communication tools that they could have used to report to their parents, which meant that the teacher was free to lie about the source of the injuries these children experienced while in her classroom. Horrified aides in the classroom reported it, and the teacher was simply reassigned.

The teacher’s defense was that she didn’t have training or support. This may well have been true. However, if that was the case, she should have recused herself from that classroom. Aides confronted her about her classroom behaviour and she said she ‘didn’t know how to stop.’ I’d say that asking to be taken out of that classroom would have been a pretty fucking good way to stop. If the defense to that is ‘well, it would have ended her teaching career,’ then may I suggest that a person who physically abuses children is not fit to be a teacher? That a person who feels that stomping on the insoles of a child’s feet is an appropriate method of ‘discipline’ is clearly not someone who should be in charge of a classroom?

‘We weren’t sure how a jury would view these facts, especially since children were involved,’ an attorney for the defense said, which is a polite way of saying ‘we are well aware that if this case had gone to trial we probably would have paid more than five million.’ The funds are being put in trust for the children, who, among other things, are in need of therapy.

There have been ‘hundreds of cases of alleged abuse and death related to the use of these methods on schoolchildren during the past two decades.’ The House of Representatives actually recently passed a bill addressing this issue, responding to a report from the General Accounting Office documenting abuse of school children across the United States.

The restraint of children with disabilities in school is, unfortunately, not at all notable. It’s a widespread and common practice and I see stories about it in the news practically every week. I’m sure a perusal through the recommended reading archives here would turn up several examples. This doesn’t make it any less vile or wildly inappropriate. I am heartened that legislation has been passed to address the issue, but outlawing abuse isn’t enough, and it’s clear that better training, accountability, and transparency are needed. The reports of those aides shouldn’t have been ignored. That district should not have reassigned the teacher to another classroom.

What is remarkable, and important to note, is that it takes a lot of money to take a case like this to court. Which means that settlements of this kind are only really available to families with at least some money. Even with lawyers willing to volunteer time, taking a case through the courts requires time, energy, the ability to pull supporting materials together, and patience. These things are not options for all families. Especially for parents with disabilities, the barriers to getting to court can be an obstacle so significant that even if they want to fight for their children, they might find it impossible to take a case to court.

Access to justice should not be dictated by social status and economic class, but it often is.

We shouldn’t have to pass laws saying it’s not ok to duct tape children to chairs, but we do.

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