Category Archives: politics

Paying For The Recession: The AIDS Drug Assistance Program

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

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

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

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

But I digress.

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

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

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

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

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

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

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

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

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

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

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

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

I’m Disabled and I Vote

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

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

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

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

California Ballot for the June 2010 primary election

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

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

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

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

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

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

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

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

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

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

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

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.

Investigating Disability Hate Crimes in the United Kingdom

The Equality and Human Rights Commission (EHRC) recently announced that it is conducting an inquiry into disability hate crimes, on the basis of research demonstrating that people with disabilities are much more likely to experience hate crimes than nondisabled people. There have been several high profile cases of bullying and abuse leading to deaths in the UK that have attracted public attention in recent years; I see a lot of articles citing the Fiona Pilkington case, where a woman killed herself and her daughter after prolonged inaction on clearly documented abuse.

According to a report  issued by the EHRC (I can only find a .pdf version, unfortunately), disabled persons in Britain are four times more likely to experience violence than other people, and the likelihood of experiencing violence goes up for people with intellectual disabilities and mental illness. Almost half of the people involved in the study reported experiences of abuse. In a statement on the report, the EHRC says:

It is not the disabled person who creates their own oppression. It is others. As Sir Ken Macdonald so eloquently argued in one of his final speeches as Director of Public Prosecutions, we must overcome a prevailing assumption that it is disabled people’s intrinsic vulnerability which explains the risk they face – an assumption unsupported by evidence. At best, this had led to protectionism, constraining rather than expanding the individual freedom and opportunity which greater safety and security should provide. Only by extending the same expectations of safety and security to disabled people as to everyone else can we truly come to address the deficits in our current approach and wake up to the need to act. (source)

The new inquiry is designed to gather more information about harassment and abuse experienced by people with disabilities and what kind of support is being provided when people report it. Poor statistics are maintained on disability hate crimes and the EHRC is also concerned that a lot of abuse is going unreported. There are significant complications when it comes to reporting abuse; what do you do, for example, when your abuser is your caregiver? What do you do when you are not provided with tools for reporting? What do you do when you don’t recognise what is happening as abuse because you haven’t been given information about the dynamics of abuse and harassment and it’s all you’ve ever known? What do you do when the people you are told to report to choose to ignore your reports or claim that there is nothing they can do?

I’m hoping that it will lead to some recommendations designed to combat harassment and abuse, and subsequent action on those recommendations. It’s easy to make statements and write reports about what should be done, but it’s harder to put these things into action. Full integration into society requires being treated like we belong there, and thus far, performance on the part of public servants who are supposed to be ensuring our safety and security has been unimpressive:

Smith [lead commissioner for the inquiry], a wheelchair user, has himself suffered abuse – with “Kripple” daubed over his walls in paint and wooden wedges hammered under his door to prevent it from being opened. “I did call the police, and the first five times it was like, ‘What do you want us to do about it?'” But I did finally get one officer prepared to do something about it and installed a surveillance system. It shows what can happen if the collective denial is challenged.”

Disabled people, says Smith, can literally become “too scared to leave home” because they are “harassed and told to ignore it by everyone else, including public bodies. It’s unacceptable”. (source, emphasis mine)

Smith’s story mirrors the Pilkington case: Repeated reports were made to law enforcement, and nothing was done. Until harassment, sexual assault, abuse, and violence against people with disabilities are treated like the serious crimes that they are, they are going to persist, and they are probably going to grow worse. This requires a fundamental rethinking of the way that disability hate crimes are handled. It requires better training for law enforcement, teachers, social workers, and other people on the front lines who are in a position to intervene.

It requires believing that people with disabilities are human beings.

“Bullying and harassment can all too often escalate into serious hate crimes against disabled people that we have all heard about.

“Harassment in any form is totally unacceptable. Everyone in society has the right to live life in safety and with security.

“For disabled people and for those people with long-term health conditions, safety and security is a right that can’t be taken for granted.” (source)

There is a fundamental lack of recognition in many regions of the world that hate crimes are a problem not just because they involve abuse of individuals, but because they are a reflection of social attitudes. Certain populations are viewed as acceptable targets for abuse by harassers, rapists, bullies, molesters because society has made its indifference to the safety, health, and wellbeing of these populations clear. Inquiries like the one planned by the EHRC are important, and will gather valuable information about patterns of abuse and harassment in the disabled community. They need to be backed up with a genuine movement towards change, a reform of social attitudes, a confrontation of the way that the actions and beliefs of society as a whole contribute to systemic oppression.

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.

A conversation

Recently, I was on the commuter train home. I happened to be reading Susan Schweik’s book Ugly Laws: Disability in Public for a research paper. Two middle-aged women sat down opposite me, and one inquired as to what book I was reading.

Me: It’s a book about 20th-century ugly laws in the U.S.

Woman #1: What’re those?

Me: Oh, they were regulations that prevented people with visible disabilities from panhandling in public, but more generally, they also kept people with disabilities out of the public eye.

Woman #2: Wow, that is so interesting! Are you in school?

Me: Yes, I’m reading this for a grad school paper.

Woman #1: You’re lucky you’re in grad school! The great thing about being in school is that you get to learn about things you might otherwise never learn about.

Me: Yeah, I suppose so.

Woman #1: And…why are you interested in that topic?

Me: I’m interested in feminist theory and disability, and how those things intersect with race, gender and class, and other stuff. That’s the short version, anyway.

Woman #1 [After a long pause]: Of course, I didn’t mean to imply that you are disabled or have a deformity

Me: Uh, okay. [Pause] You can’t see it, but I do have chronic pain.

And the conversation sort of stopped after that. For some reason, I suspect that this is not an uncommon occurrence.

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.

US Action Item: Support House Resolution 3101/Senate Resolution 3304

House Resolution (H.R.) 3101/Senate Resolution (S) 33041, also known as The Twenty First Century Communications and Video Accessibility Act, just went through committee hearings, nearly a year after being introduced. Referral to committee is the second step that happens after a bill gets introduced; in this case, H.R. 3101 has been referred to the Committee on Energy and Commerce in the House and S 3304 is in the Committee on Commerce, Science, and Transportation in the Senate. The committees will report on the outcome of their hearings and if that report is favourable, it will be brought to the floor for a vote. If both houses approve, the bill passes and the President can sign it into law.

This piece of legislature is one that I would really like to see pass.

What is The Twenty First Century Communications and Video Accessibility Act?

If you like to view things at the source, you can read the text of the bill here. If you’d rather not, the quick thumbnail is that it’s a bill mandating accessibility for Internet-enabled telecommunications devices. Some highlights from a one page summary provided by the Coalition of Organizations for Accessible Technology:

  • Allocates up to $10 million/year for equipment used by people who are deaf-blind (Currently:  Inadequate state programs that distribute some free or discounted telephone equipment, but little available for people who are deaf-blind)
  • Clarifies the scope of relay services to include calls between and among people with disabilities and requires Internet-based service providers to contribute to the Interstate Relay Fund
  • Extends closed captioning obligations to video programming provided by, or generally considered comparable to programming provided by, a television broadcast station, even when distributed over the Internet: covers video programming that was previously captioned for television viewing, live video programming, and new video programming provided by or generally considered to be comparable to programming provided by multichannel programming distributors; does not cover user-generated content (e.g., YouTube videos posted by individuals) (Current law:  Captioning required on most broadcast, cable and satellite TV shows)
  • Requires easy access to closed captions via remote control and on-screen menus

The National Association of the Deaf has more detail on the bill here.

How can you support it?

You can start by checking out the list of sponsors to see if your representative is listed. If your representative is on there, send ou a polite note expressing thanks for support. If your representative is not, you can send a letter asking that ou consider sponsoring the bill. COAT has a template available, although it is helpful to customise it a bit to make it more personal.

Don’t know who your representative is or not sure about how to contact your rep? The ‘Write Your Representative‘ tool will help you.

It’s also a good idea to contact your Senators to let them know that you support S 3304 and you would like them to support the bill. If your Senators happen to be on the Senate Committee on Commerce, Science, and Transportation, so much the better. You can see a list of Senate cosponsors here.

Caption Action 2 is keeping up on H.R. 3101 and posting regular updates.

  1. The different bill numbers reflect the separate systems used in the House and Senate. The bills must be identical for both houses to pass it and it to enter law.

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…”

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.