Category Archives: poverty

Catch-22 Policies: Medi-Cal and Transplants

I ran across a situation recently that required me to figure out how the Medi-Cal program – California’s implementation of the Medicaid program, which provides government-funded health insurance to low-income people – handles people who have received transplants. What was happening was so illogical and ill-conceived that I was astounded to find out that it was exactly what the regulations and structure of the program wanted to happen. This is an example of state and federal policy just Not Making Sense.

Not all low-income people can qualify for Medicaid, but have to have a “linkage” to the program in addition to being poor. One of the linkages is have a disability that meets the Social Security Administration’s (SSA) definition of “disabled”: having a physical and/or mental impairment that prevents the individual from engaging in “substantial gainful activity” for at least 12 months. “Substantial gainful activity” just means work where the individual is earning a certain level of wages that SSA thinks is enough to support themselves, a fixed dollar amount that SSA adjusts every year. So, basically, a person has to be completely unable to work for at least a year in order to be eligible. Once they start getting Medi-Cal on the basis of disability by proving they meet that standard, the program will periodically re-evaluate them to see if their condition has improved and if they could now return to work. If the Medi-Cal program thinks the person’s disability has improved, they’ll be cut off the program and no longer have access to health insurance.

This reflects the underlying policies and values that caused the program to exist – policymakers want people to work and support themselves and will only step in to provide benefits if there’s some compelling reason the person is unable to do so. (Note: I have a lot of problems with those assumptions and am not endorsing them myself, just outlining what we can assume the policymakers believed and intended.) So, if a person is later able to support themselves through work, we’ll cut off the benefits because there’s no longer a compelling reason for them to not be supporting themselves.

It’s easy to anticipate a number of potential problems with those policies, mainly around the cyclical nature of many disabilities. But I want to focus on specifically is people who have received organ transplants. When a person needs a transplant, they will certainly meet the disability standard and be able to get on Medi-Cal. Someone in dire need of a kidney or liver transplant is not going to be working 40 hours a week – they are likely going to be in the hospital for a lot, if not all, of their time. So they’ll get Medi-Cal coverage, which will pay for the transplant surgery and hospitalization and all that sort of thing.

After the transplant, time goes by. SSA says they will assume someone will continue to be disabled for one year after a transplant operation, but after the first 12 months, the Medi-Cal program will start evaluating the person to see if they continue to meet the disability standard. Most times, people won’t, because recovering from transplant surgeries is difficult and takes a long time, even if there’s no significant complications or organ rejection problems. So people continue to be covered by Medi-Cal.

Now, some more time goes by. And for some people, the transplant has resolved their underlying health problems. (This certainly isn’t true for all transplant recipients.) They’ve recovered from the transplant surgery. They’re doing well. And when Medi-Cal comes around to re-evaluate their disability, the may not meet it anymore. They may not be so severely impaired that they’re unable to do any work at all. And for most people, this would be a good thing. They’re getting better. They’re improving. They have more ability to function, to care for themselves, to be independent. And most of them are immensely excited about and proud of that progress. They have worked hard for it.

But it can mean that their Medi-Cal gets cut off. That their health insurance goes away entirely. And this is an enormous problem, because no matter how well someone has recovered from transplant surgery, she has to keep taking immunosuppressant anti-rejection drugs so her body doesn’t begin to reject the transplanted organ. And my understanding is the vast majority of transplant recipients have to keep taking anti-rejection medications for the rest of their lives. So when a transplant recipient’s health insurance gets cut off – how are they supposed to afford those expensive immunosuppressants? The Transplant Recipient’s International Organization estimates that “the average annual cost for immunosuppressive medications for kidney transplant recipients is approximately $11,000.Transplant Living estimates the costs to be even higher, ranging from $17,200 to $27,500 per year, depending on which organ was transplanted.

For transplant recipients cut off Medi-Cal for disability reasons – which means they are still poor enough to qualify for the program – those costs are completely beyond reach. This is especially true because the person has likely also just lost eligibility for cash benefits from Social Security for no longer meeting the disability standard – so they must go out and figure out how to start earning enough to pay for rent, food, utilities, transportation, and the medication costs. And if they can’t manage to get enough money for the drugs? Their body will start to reject the transplanted organ, and they’ll go into kidney failure, or liver failure, or heart failure, or other organ failure. At which point they will go back to the hospital, extremely ill, and go back on the transplant list . At which point they will be so sick they can get back on Medi-Cal, which will pay for their hospitalization and the next transplant surgery.

Obviously, this is immensely cruel. Requiring someone who has just managed to recover from the first transplant surgery to abandon their medical treatment so they get increasingly sick, potentially fatally sick, to undergo another invasive and traumatic transplant surgery – if an organ even becomes available! – is beyond inhumane. But even from a purely economic perspective, it makes no sense. Certainly immunosuppressant medications are expensive – expensive enough that people can’t afford them without help, so it’s not without cost for the Medi-Cal program to pay for them. But organ failure and transplantation are way more expensive in comparison. Looking at a kidney transplant, the 30 days of hospitalization during pre-transplant organ failure cost $16,700; organ procurement costs are $67,500; admission during the transplant procedure and recovery is $92,700; the physician for the transplant surgery is $17,500; the post-transplant admission is $47,400; and then the immunsuppressant drugs cost $17,200. A report by Milliman Research (pdf) has even higher numbers, estimating the cost of a liver transplant at $523,400.

I think there are compelling arguments for a policy change that fit within my values and priorities – to avoid human suffering – but this cost data suggests a strong argument for a policy change that fits within the values of those in power – reducing costs. To make this argument to those people, I would analogize: if you buy a house, you put in maintenance, you don’t just abandon it to fall apart. It makes sense to put in upkeep and maintenance on property to protect the value of the property. The Medi-Cal program is buying these people organs, it should maintain those organs. But that’s not what the program rules say should happen. That’s not the policy.Read more: Catch-22 Policies: Medi-Cal and Transplants

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.

Bad Behavior, continued: More on School Discipline

s.e. smith recently wrote about abuse of autistic students in Pennsylvania and the distressing rise in abusive ‘discipline’ for students with disabilities. Ou mentioned a recent study from Delaware that found that students with disabilities are more likely to be suspended for ‘behavior’ problems than students without disabilities. Ou discussed some easy ways that a disabled student’s behavior could be categorized as disruptive and make them subject to discipline:

Are students suspended for not using modes of communication familiar to teachers? For needing to stand or pace while learning? For needing a quiet environment for learning, and for becoming upset when one is not provided? For needing orderly and precise schedules? For not completing assignments they don’t understand or find impossible to finish? For attempting to create and maintain personal space? For expressing any number of needs and needing a space where they are accommodated? For tics in the classroom?

I had all this fresh in my mind when, at work, I came across a recent report on school discipline in the Los Angeles Unified School District. Although one of the organizations involved in researching and preparing the report is an organization focused on mental health disabilities, the executive summary does not have any data or recommendations about students with disabilities. But it did have a couple of points that I found very interesting and thought were worth discussing.

The first underlines the point that s.e. smith was making in ou’s previous post – that disproportionate discipline demonstrates broader societal disregard for the targeted group. The report re-frames the student dropout crisis as a “student ‘push-out’ crisis,” arguing that discipline reform “requires respect for children’s dignity, meaning schools will not exclude, get rid of, or criminalize them for misbehavior or underachievement… If the policies and practices of every school were geared to fulfill their human rights, our children would not be excluded, tracked, and pushed out… [nonconforming] students are more likely than other students to be ‘pushed out’ of school and ultimately find themselves in the juvenile delinquency or adult criminal justice systems.”

s.e. said the same thing in ou’s earlier post:

This is a reflection of a lot of problems with the way society views and treats people with disabilities, and of serious inadequacies in the education system. Teachers who abuse students clearly should not be in the classroom, yet they are, and they are sometimes allowed to remain even after abuse is reported. Teachers who have received no training in working with disabled students shouldn’t be assigned to classrooms with disabled students, yet they are.

The primary focus of the report was highlighting the extreme racial disparities in LAUSD discipline. African-American students make up 22% of LAUSD students, but about half of disciplinary actions involve African-American students. These students were also more than twice as likely to be suspended than other ethnic groups. As the report concludes, “the gross disparities apparent in the past and current application of suspension to African-American students by LAUSD make clear that … the District employs practices that are inconsistent with federal, human rights, and state mandates.”

Although the report highlights racial disparities, it seems that one of the primary recommendations of the report would benefit all students targeted for discipline, including those with disabilities:

Priority: Share Power with Parents.

Recommendation: Share the first signs. Schools shall contact parents at the first sign that something is wrong with a student’s behavior so there is an opportunity to take preventative measures rather than wait until an issue escalates into a major problem.

Recommendation: Share planning and decision-making. Schools shall include parents on their [discipline] teams and give them equal say in decision-making and planning related to [discipline policy.]

Recommendation: Create shared trainings. The District and schools shall conduct [discipline policy] trainings jointly with administrators, teachers, and parents in the same room.

Recommendation: Enable parents to enforce accountability and transparency by schools. Schools shall establish parent committees to observe discipline practices, especially in the classrooms, play areas, and cafeteria. Schools shall make disciplinary data, practices and procedures, and outcomes and benchmark data available on a monthly basis to parents and the community so they can also monitor implementation of [discipline policy] and do whatever necessary to hold LAUSD accountable. The District shall effectively inform parents of what schools are required to do according to [discipline policy], and what parents should do if their schools are not following through.

A final thought: it would be very interesting to see data of discipline rates of disabled students of color. They must be through the roof.

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.

Recommended Reading for June 15, 2010

dhobikikutti (DW): This is also needed: A Space In Which To Be Angry

And what I have realised is that there is a sixth component to [personal profile] zvi‘s rules, and that is that complaining about and calling out what you do not like does help, slowly, painfully, get rid of it.

Every time I see friends who make locked posts about fic that Others them, that writes appropriatively and ignorantly and dismissively and condescendingly and fetishistically about their identities, I think — there needs to be a space where this can be said.

damned_colonial (DW): Hurt/comfort and the real world [warning: derailing in comments]

Writing a short ficlet in which someone who has been abused/injured/disabled/etc is “comforted” and feels better seldom bears much relation to the reality of abuse/injury/disability/etc. Which, OK, we write a lot of unrealistic things. The problem with this one is that the idea of hurts being easily cured/comforted is one that also exists in the real world and harms real people. Almost anyone with a real-world, serious “hurt” has had people dismiss and belittle their experience on the assumption that they “should be over it by now” or that “if you just did X” the problem would go away. People are often treated badly or denied care on these grounds.

Pauline W. Chen, M.D. (New York Times): Why Patients Aren’t Getting the Shingles Vaccine

“Shingles vaccination has become a disparity issue,” Dr. Hurley added. “It’s great that this vaccine was developed and could potentially prevent a very severe disease. But we have to have a reimbursement process that coincides with these interventions. Just making these vaccines doesn’t mean that they will have a public health impact.”

Trine Tsouderos (Chicago Tribune/L.A. Times): The push and pull over a chronic fatigue syndrome study

Nine months later, the joyous mood has soured. Five research teams trying to confirm the finding have reported in journals or at conferences that they could not find the retrovirus, known as XMRV, in patients diagnosed with chronic fatigue syndrome, casting grave doubts on the connection.

Kjerstin Johnson at Bitch Magazine’s Sm{art} blog: Riva Lehrer’s body of art

To Lehrer, who has spina bifida, “Disability and art are natural partners. In order to have a good life with a disability, you have to learn to re-invent your world almost hour by hour. You discover ways to re-imagine everything, and how not to take the average answers to everyday questions…”

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.

Where About Us But Without Us Leads

On 1 June 2010, E. Fuller Torrey MD wrote an op-ed column for the New York Times, “Make Kendra’s Law Permanent.” Dr Torrey is the founder of the Treatment Advocacy Center (TAC), a nonprofit group whose sole purpose is to lobby states for the passage of so-called assisted outpatient treatment (AOT) laws like Kendra’s Law in New York and Laura’s Law in California. The New York law is named after Kendra Webdale, who was killed by Andrew Goldstein in 1999.

Dr Torrey and TAC will tell you Mr Goldstein had untreated schizophrenia. They’ll tell you people like him are dangerous, they’ll tell you people like Mr Goldstein are often so sick they don’t understand they’re ill and need treatment, and they’ll tell you they know best. They won’t tell you that Mr Goldstein had been seeking treatment desperately and been turned away repeatedly.1 Read more: Where About Us But Without Us Leads

Crude Violations: Oil, Human Rights, and Environmental Devastation in Nigeria

abby jean posted a link this morning on her Tumblr, putting the Deepwater Horizon catastrophe in perspective. While this oil disaster is attracting a great deal of attention in the United States right now thanks to BP’s foot-dragging and prevarications, there isn’t much coverage in the United States on the situation in Nigeria, and there hasn’t been, and there isn’t likely to be. Nigeria holds an estimated three percent of global oil reserves, in the form of highly desirable light sweet crude. As a result, it’s been heavily exploited. Nigeria’s oil infrastructure is not keeping pace with the rate of drilling, however, and as a result, the equivalent of an Exxon-Valdez1 is spilled every year in Nigeria.

The situation in Nigeria is a complicated one. In a nutshell, the government nationalised large portions of the oil reserves once it realised their value. Oil wealth quickly became concentrated in the hands of Nigeria’s most powerful as a result of corruption2, and this angered ethnic minorities such as the Ogoni and Ijaw, who argue that their lands have been taken from them and polluted and they are seeing none of the benefits. These groups began protesting, protesting turned to violence, and, recently, a negotiated amnesty fell apart.

Nigeria is heavily dependent on oil. 95% of the country’s export earnings are from the sale of oil. So are 85% of government revenues. There are some very high stakes here. People talk about ‘oil economies’ and in the case of Nigeria, this is literal. The heavy reliance on oil turns into big profits for officials in the right places, as well as the numerous heavy players in the oil industry who are involved in Nigeria.

Helpfully, most of the news articles I see on Nigeria focus on the potential problems the United States might expect if oil production in Nigeria is cut as a result of violence. Because, clearly, this is the most important priority; who cares about the environment, who cares about poverty, who cares about state-sponsored violence, who cares about our complicity. Let’s focus on whether or not we will be able to import adequate supplies of oil from Nigeria. In 2009, the US military invested $310 million United States Dollars in ‘security’ in oil-rich regions of Africa. To ‘protect our interests.’

It is Nigeria’s most vulnerable who pay the high price for the oil industry in Nigeria. Many communities in regions where oil is drilled are living in poverty. Infrastructure like roads, clinics, electricity, and schools is thin on the ground. Meanwhile, pollution ruins crops and destroys fish stocks. Communities wait for days for oil personnel to respond when leaks occur. Sometimes, leaks develop and impoverished people swarm the section of broken pipe to collect oil. There are explosions and deaths. Respiratory diseases and malnutrition occur at extremely high rates in  oil-affected communities.

Reprisals for outspoken communities can be swift and devastating. Communities suspected of harboring militants are burned to the ground. Oil companies are also involved. Attempts to run critical ad campaigns in the mainstream media have been rebuffed; the ‘Shame Shell’ Campaign, for example, was recently refused by the Financial Times. Consequently, many people are not aware of the situation in Nigeria, let alone their own involvement; citizens in nations with high oil consumption, like the United States, don’t realise the not-so-hidden costs of the petrol they use to fill their cars.

Nigeria ranks 158 on the Human Development Index. When oil was initially discovered in Nigeria, there were hopes that it could be turned into a model nation where profits from oil were distributed throughout the population and everyone benefited from the country’s oil reserves. This is not what happened. Instead, Nigeria has been saddled with environmental pollution, an increasing poverty rate, violence, and extremely high political corruption even as it, on the surface, rakes in substantial profits every year. Those profits stay firmly at the top of the social and political power structure, though, instead of providing real benefits to communities.

Oil, some Nigerians say, is a curse.

Meanwhile, here in the United States, BP, a company with a lengthy history of environmental and human rights violations, claims that it will be paying for the costs of the Deepwater Horizon incident. The media is filled with haunting images. Oiled birds. Slicks of oil on the water. Dead sea turtles washing up on beaches. Nigeria, where sustained environmental damage has been occurring for decades, is a nonentity for the US media unless it comes to grim warnings that ‘ethnic violence’ might disrupt our oil supplies.

Human rights are a social justice issue. Environmental devastation is a social justice issue. Exploitation of oil reserves, by extension, is a social justice issue because of the astoundingly abusive and corrupt practices heavily tied in with the oil industry. You should know about what is happening in Nigeria and many other oil-rich nations, where the most vulnerable are hung out to dry while the most powerful profit.

And you should be angry about it.

  1. This 1989 oil spill in the Prince William Sound in Alaska resulted in the release of 250,000 barrels of oil. It became a cause celebre of the environmental movement, and much to the infuriation of Exxon, it’s often used as a unit of measurement for oil spills to put things into context for the public.
  2. It is estimated that as much as 70% of oil revenues is ‘lost.’
Next page →
← Previous page