Category Archives: justice

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

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.

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.

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.

Quick Hit: The Horrors of Solitary Confinement

When I first saw this post on the ACLU’s blog about solitary confinement for juvenile girls in criminal detention, I was so horrified that I opened it in a tab and then couldn’t look at it again for several days. When I read through the entire post, I cried. I believe that when the United States takes control of a person, whether in criminal or immigration detention, they take on an obligation to care for that person, or at least not put them in mortal danger. And that is simply not happening. On the contrary, the solitary confinement policies seem to target girls with existing trauma and/or mental health histories for further isolation and victimization.

[Trigger warnings for sexual assault and abuse based on disability.]

In June 2008, the ACLU filed a class action lawsuit challenging inhumane practices at the Brownwood State School, a youth prison in central Texas. Girls at Brownwood are regularly placed in punitive solitary confinement in oppressively cold, concrete cells, that are empty except for a metal slab intended to be used as a bed. Solitary confinement is imposed for minor misbehavior, for self-harm or for expressing a desire to commit self-harm, and can be brief or can last for days, weeks and even months. It’s hard to imagine a more destructive reaction to a child in crisis, but it’s the norm. Unfortunately, these practices are not limited to Brownwood, or Texas, for that matter.

There are currently more than 14,000 girls incarcerated in the United States, a number that has been rapidly increasing in recent decades. Most of these girls are arrested for minor, nonviolent offenses and probation violations. Locked up under the guise of rehabilitation, girls nationwide — the vast majority of whom have been sexually/physically abused — are subjected to punitive solitary confinement, routine strip searches, and other forms of abuse. Meanwhile, they are denied the essential mental health care, education, and social services they need. Far from helping girls cope with the trauma they have suffered, youth prisons’ use of solitary confinement only retraumatizes them and further impedes their rehabilitation.

This is abundantly clear in a recent collection of testimonies from girls imprisoned in Texas juvenile institutions printed by Harper’s magazine this week. On newsstands today, the May 2010 issue features excerpts from ACLU interviews with incarcerated teenage girls. A few noteworthy excerpts include a girl who states that her crying is treated as “problem behavior,” another who was locked in a solitary confinement cell surrounded by her own vomit for over 24 hours, and perhaps even more disturbing, the following testimony from a girl in solitary confinement:

“A staff [member] gave me a pill, and he told me he was going to take me to get my meds. We ended up in this dirty room. It had pipes, buckets—it was dusty, it was nasty. I was like, I want to go to sleep, and he was like, You’re not leaving until we have sex. I didn’t know what to do. I didn’t know to scream, I didn’t know to do none of that stuff. I told him I wasn’t going to lie on that dirty floor, and he was like, Well, just bend over, and so—I didn’t know what he was going to do to me. I don’t know if he could’ve killed me and it would’ve been on the news: We just found a dead teenager at TYC and nobody knows what happened.

— 17-year-old, Marlin Orientation and Assessment Unit

By 25 June, 2010.    age, autonomy, justice, mental health, resistance   

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.

Quoted: Audre Lorde

The supposition that one [group] needs the other’s acquiescence in order to exist prevents both from moving together as self-defined persons toward a common goal. This kind of action is a prevalent error among oppressed peoples. It is based upon the false notion that there is only a limited and particular amount of freedom that must be divided up between us, with the largest and juiciest pieces of liberty going as spoils to the victor or the stronger. So instead of joining together to fight for more, we quarrel between ourselves for a larger slice of the one pie.

— “Scratching the Surface: Some Notes on Barriers to Women and Loving” (1978), in Sister Outsider: Essays and Speeches (The Crossing Press, 1984)

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.

New VA Research Could Explain Lasting Effects of PTSD

Gentle readers! I come to you today with a delighted feeling that I do not believe is caused by the half life if a painkiller! Today I read an article in my paper version of Stars and Stripes that had to do with the intersection of disability and veterans and I was not instantly thrown into a bout of contemptuous paper shredding! I mean, really, I could make party favors and possibly go into business selling paper mache animals for children to beat with broom handles in hopes of gathering candy! But I am a slightly morbid person some days, especially when the painkillers aren’t working.

But in all seriousness, this article, about the long term effects of PTSD on the body, has some points which I will now discuss with you in a non-concise manner! Not the least of these details, relegated to two brief paragraphs, is the fact that the people at the VA are doing one study specifically aimed at women who served in the Vietnam War, acknowledging that while women did not serve in combat, that the war affected them in very real ways:

Women did not serve in combat during the Vietnam War but many experienced trauma while serving as nurses and care providers to the wounded returning from battlefield, Magruder said.

“No one has studied the mental health of these women,” she said. “Their experiences were certainly different than the men, but they had other experiences. Some of these women were the last people to hold the hand of an 18-year-old kid who was dying.”

Gee, their experiences were different from men, you say? No kidding? *ahem*

One of the biggest myths that I encounter, being the go-to girl on military matters in some social justice blogging circles is that combat veterans have the patent on PTSD, which is not only incorrect, but also erases the experiences of countless other people whose lives are destroyed by the ways that PTSD is still misunderstood. I’ll take two paragraphs if it means that the VA is finally getting around to accepting the idea that ladies might actually have what it takes to handle the VA being wrong (about ladies having PTSD, that is).

The VA is now trying to weasel out of the fact that they were ordered to look into this PTSD business a long time ago — a decade but who’s counting, amirite? — but decided to throw Congress the bird and a “Ah do what Ah WANT!” Eric Cartman impression. The National Vietnam Veterans Longitudinal Study, expected to help create new policies and effect changes for incoming veterans with PTSD by 2013 might have actually done some good for people who are already having trouble convincing doctors at the VA that their condition is real if the VA could have been arsed to get this show on the road back then. A decade ago they were one less war behind.

It’s nice that they are starting to get around to looking into things like the correlation between living with PTSD for years and developing other conditions. Things like cardiovascular disease, cancer, dementia, asthma and diabetes are common among Vietnam vets who have been living with PTSD for decades, and according to the article there are some who believe even the immune system is affected by years with PTSD. But you can’t help anyone when you aren’t doing the research to find out how.

As the VA is becoming sandwiched between claimants from war era veterans from major wars that have left physical and mental scars on so many, it is important that they get their act together and start doing what they were told to do a long damned time ago. Having the longitudinal data from Vietnam veterans will more than likely prove useful as more and more people come home from two fronts to their old lives and attempt to readjust, and it could lead to better services for more veterans from any war. I can’t say that I have a lot of faith in them to get it together. As Charles Trumpower, a disabled Marine who tours the country speaking to veterans about PTSD notes, not a lot has changed in the last 35 years.

Don’t get me wrong, I’m thrilled to see this research and this effort going underway, but wow, readers, should this have been done a long time ago. I can’t help but think of all the people that this could have helped.

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