Category Archives: poverty

The Absolutely True Diary of a Part-Time Indian: The Awkward Lines of -ist Language

[The scene sets with OYD, a slightly pale yet never-the-less still quite indigenous woman, sitting down to her trusty Macbook Pro, a laptop named “Lappy”, who has seen better days. She sets down and opens up her “drafts” tab under FWD/Forward, where she notices that egads! she has been working on this book review for over a month, and Oh my! how it must have been a long time since she has completed one. She cracks her “double jointed” knuckles like she does it too often, tucks a strand of brown hair behind her ear. She drags the review out of “drafts”, dusts it off, reaches for anything caffeinated, and begins to type.]

The Absolutely True Diary of a Part-Time Indian 1st edition cover. A black background with plastic toy figures of a cowboy and an indian, with the title and author's name in chunky green and white letters.I like media where I can consume it, enjoy it, and get a sense that I am experiencing something that touches on experiences that are my own, that seems real to me with out over-exaggerating them (mostly). I also enjoy it when certain traits about characters are touched upon as a description, as part of who that character is, but then they are not brought up as Huge Deals throughout the entirety of the book.

These are a few things that really endeared Alexie Sherman’s The Absolutely True Diary of a Part-Time Indian to me. Sherman created a protagonist “Junior”, who was born into the world with several oppressions, living on the axis of poverty, race, and disability. Within the first few pages of the book Junior gives a pretty good run down of how each of these things affects his life, and has always affected his life from the moment he was born. From never having quite enough to eat, to the way his “grease on the brain” has given him a stutter and seizures.

But that is where Alexie leaves the discussion about Junior’s disability. It is just a part of him, a description of his character. It isn’t some great obstacle he has to overcome. His disability isn’t some plot point, and it doesn’t help the other people around him become inspired about trying harder or appreciating their lives more. In fact, he goes into great detail early on, in those first few pages, to explain that the reservation kids often bully him. From an excerpt on NPR:

You wouldn’t think there is anything life threatening about speech impediments, but let me tell you, there is nothing more dangerous than being a kid with a stutter and a lisp.

A five-year-old is cute when he lisps and stutters. Heck, most of the big-time kid actors stuttered and lisped their way to stardom.

And, jeez, you’re still fairly cute when you’re a stuttering and lisping six-, seven-, and eight-year-old, but it’s all over when you turn nine and ten.

After that, your stutter and lisp turn you into a retard.

And if you’re fourteen years old, like me, and you’re still stuttering and lisping, then you become the biggest retard in the world.

Everybody on the rez calls me a retard about twice a day. They call me retard when they are pantsing me or stuffing my head in the toilet or just smacking me upside the head.

I’m not even writing down this story the way I actually talk, because I’d have to fill it with stutters and lisps, and then you’d be wondering why you’re reading a story written by such a retard.

Do you know what happens to retards on the rez?

We get beat up.

At least once a month.

Yep, I belong to the Black-Eye-of-the-Month Club.

Sure I want to go outside. Every kid wants to go outside. But it is safer to stay at home. So I mostly hang out alone in my bedroom and read books and draw cartoons.

Then, he moves leaves it there. We know he deals with these things as part of his life, but they do not define his life. Even the most horrible and hurtful parts of his life with disability are not defining his life.

Some other things that are not defined by Junior’s particular disability:

  • His grades in school — He does well in school, and this point becomes part of the main plot, so I won’t give too much away for anyone who plans to read this book.
  • His ability to participate in sports — Junior plays many sports, including contact sports. He is a good basketball player, playing on the school’s team.
  • His ability to have romantic relationships — Despite his believing how shallow it is, Junior has a girlfriend, and as it turns out, she actually likes him! Imagine that!

The other aspect of this book that I enjoyed, though I don’t expect every reader to view the same way, is that the Indian Reservation depicted has a lot of truth to it from my own experiences of having grown up on and around my own as a girl. Twenty, and even ten years ago, our reservation life was not so far off from the one described here, with the exception of perhaps the climate being slightly different, and perhaps I was too young to understand and remember anything about crime rates. But there was poverty, and then there was crushing poverty where I am from. There was alcoholism, though I would venture that perhaps it wasn’t the hot-button stereotype that I feel is portrayed at times in Alexie’s book. I don’t know. Every Native community is different, for sure, with their own unique set of problems. While I feel that there is a lot of truth to what Sherman Alexie has created, I also feel that there is a sweeping generalization. So, it hits and it misses, and I would encourage you to read it for yourself and decide what you think.

There are a lot of instances of language that I would not recommend in a progressive or social change setting going on here in this book. I see it being useful and very much achieving its purpose, for example, there is a very racist joke told by a white boy that Junior meets on his first day of school, using the “n”, which I will not repeat, but which is disparaging to Natives and Black people alike. Junior demonstrates an intolerance for it, without missing a beat, and in Junior’s point of view, the kid respects him for it. But, I have to wonder, is it because of how Junior addresses it, or because this particular student realizes that what he said was hurtful and wrong? The demonstration of how wrong racism is in YA literature is something I want to see more, but I question, sometimes, the ways in which we see it handled. There is almost no discussion or consideration of why this is wrong, just the very visceral use of very hateful words (like above, with the use of the “r” word in so casual a context). Just like using rape as a metaphor to show that a “bad” guy is bad, I don’t need to see or read -ist language for shock value to confront -isms. However, a well placed word could have the proper effect if viewed through the proper lens, but I don’t know if that is quite so obvious here. Junior simply reacts, saying he has to defend Black people, and Indians, but he doesn’t go into much else.

I will also note on the Wise White Person, or WWP, as I will. It takes a WWP living on the rez to point out all of Junior’s problems early on, and essentially Save Him! from the Rotten Destitution! Without a WWP, why poor Junior might be dead, the victim of a trailer fire started by grease from frybread, helplessly drunk and passed out.

The Absolutely True Diary of a Part-Time Indian, is an excellent book, worth reading, for many reasons, but I caution you, gentle readers, there are many themes addressed, in very direct and raw ways that I am still not sure that I wholly approve of, and yet, as a non-white, Native American, woman, with a disability, I am not fully sure that fully disapprove of all of them either.

Oh, except for the sexist language. I found no use for that at all. I found no point where that taught any lesson, except where young boys were using it to show that “Hey!  Women and girls’ bodies are weak, so calling you a woman or a girl body part means you are weak! Har har!” You get no points there, Alexie. Misogyny wins again! Whee!

In Case of Emergency, Break Glass: People With Disabilities and Disaster Preparedness

Last week, Hurricane Earl appeared to be bearing down on the Eastern Seaboard on the United States, and there were a number of stories about communities preparing for evacuation, or weathering out the storm. Watching the news unfold, I noted a pretty glaring absence in the coverage: Any discussion, at all, of people with disabilities. Ever since Hurricane Katrina, the US government has been aware that there are significant gaps in disaster preparedness planning for the disabled community. Several reports since then have suggested that, despite policy changes, most communities are still not ready to deal with the evacuation of their disabled residents.

What this boils down to is that people with disabilities get left behind in disasters. If they weather the disaster itself, they are left without any support networks, for as long as it takes to reestablish community services. For people dependent on electric medical devices, this can translate into death within hours or days as electricity services are cut and backup power sources dwindle away, one by one. For others, it means sitting for days without access to food, medications, and basic hygiene services.

‘Be prepared,’ they tell us. Establish an evacuation plan. Don’t plan on depending on family or public services. Stock up on at least a week’s worth of medication. Register with community organisations (ok, I guess, you can depend on some public services?). If you rely on electric medical devices and need services like dialysis, find locations where you can access electricity and the health services you need. Set up multiple failsafes, multiple friends who will check in on you.

And, you know, all this sounds great, in theory. But how does it work out in practice?

Let’s say that you have a degenerative neurological disease and you spend most of your time in bed. You cannot sit upright, walk, or stand. That means that, if an evacuation order comes through, you need transport that can accommodate you. That transport? Can cost thousands of dollars, one way. Assuming you can access it, which is not a guarantee, because transport services may not be running or may already be booked. Are you supposed to maintain a $30,000 USD adaptive van in the garage in case you need to evacuate at some point?

Let’s say you, like most people with disabilities, are living near, at, or below the poverty line. How are you going to stock up on a week’s worth of expensive medications and supplies? Or you, like many poor folks in urban areas in the US, regardless of disability status, do not have a car. You are dependent on public transport for evacuation. You can’t ‘just get out’ and you certainly don’t have a car packed with evacuation supplies. You are limited to what you can carry. Your friends don’t have cars either. How are you supposed to pack a 50 pound extra battery for your chair, again?

You may have limited friend networks, and many of your friends may be disabled as well. You all need help to evacuate in disasters. You can check in on each other, but none of you can help each other evacuate. What if you’re in a remote, rural area and the closest dialysis center is hundreds of miles away? What if there are no community organisations in your area or, you call to register with them and they say they can’t help, don’t take people like you, have no resources for people like you? What if you call around to emergency shelters and they aren’t accessible, don’t have backup generators for power? What if you can’t communicate with the people running evacuation services and emergency shelters?

There’s a long list of ‘what ifs’ that deconstruct the supposedly ‘easy’ process of planning ahead for a disaster. Every single disaster preparedness guide for people with disabilities I’ve looked up starts with ‘make a plan,’ but doesn’t really provide information on how to make that plan, what to do if it’s functionally impossible in your community to plan. How can people be expected to ‘just make a plan’ when they lack access to basic services even when there’s no impending disaster?

A common stigmatisation ploy used against people with disabilities is that we are ‘dependent’ on the government and rely on the government for everything. But, when it comes to survival, we are reminded in disasters that we actually cannot depend on the government. People with disabilities are told that there are no measures in place to assist them during evacuations, and they need to make their own arrangements. Functionally, that results in being left behind to ‘weather it out’ and hope that, when emergency responders finally start arriving, they can enact a rescue before it’s too late. It’s too expensive, evidently, to include us in community disaster planning.

We won’t even talk about what happens after the disaster, when people with disabilities have a harder time recovering than the general population. Just making it through a disaster at all is a feat, given the way the deck is stacked against us. The government is working on making disaster planning more inclusive, but it’s not working fast enough. It’s another reminder of the impact social attitudes has on policy; we are an afterthought, we are demanding ‘special treatment’ when we ask to be evacuated to safety with the rest of the population.

What kind of disaster planning is available in your community? If there is a disaster, what will happen to you?

Crude Violations: BP Is Dumping Toxic Waste In Low Income Communities of Colour

The Gulf oil spill that has been capturing the news cycle in the United States for the last few months finally appears to be under control, and now we’re faced with a common problem: We have a whole lot of waste from the spill and associated cleanup, and it needs to go somewhere. This includes crude oil, equipment used by cleanup crews, soiled booms, and all kinds of other spill-associated detritus.

According to a story published at Colorlines last week, nine landfills in the Gulf region have been selected as sites for disposing of waste. Waste management authorities claim the material isn’t toxic, which means that regular municipal landfills, rather than landfills specifically designed to handle hazardous waste, are being used. Of the nine landfills chosen, five are located in low income communities of colour.

This is not a coincidence. While it is true that there are a number of primarily nonwhite communities in the Gulf, and that many of these communities are also low income, thus making it statistically more probable that at least some of the waste would end up in such communities, this case is clearly an example of environmental racism. There is a very long history in the United States of pushing unwanted toxic waste into low income communities in general, and communities with large nonwhite populations in particular.

There have been rumblings over the last few months about where BP is putting the oil spill waste, and most of those rumblings have focused on outraged white communities. This distracts neatly from the far more serious issue, the fact that most of this waste would end up in nonwhite communities, and that these communities would experience serious long term consequences. Focusing on white communities also allows the media to completely ignore the overt racism involved in deciding where potentially toxic waste ends up.

From the start, the oil spill has disproportionately impacted people of colour. Many of the cleanup workers were people of colour, and BP also used primarily nonwhite prison labour in oil spill cleanup and tried to hide it. Now, with the spill cleanup winding down, waste from the spill is being dumped on nonwhite communities even as these communities struggle to recover economically from the impacts of the spill. They can look forward to leaching of oil and chemicals from their landfills  in the coming decades, and reports on the ground also indicate that the waste is already poorly controlled, with oil slicks and tarballs showing up around communities being used as dumping sites.

Given that this waste is supposedly ‘nontoxic,’ why were cleanup workers wearing protective suits? Given that this waste is supposedly ‘nontoxic,’ why are people who have been exposed to  it getting sick? Given that this waste is supposedly ‘nontoxic,’ why is care being taken to ensure it doesn’t end up in privileged communities?

Crude oil can contain things like benzene, chromium, mercury, sulfur, toluene, and xylene. These substances are known to have deleterious effects on human health; at the very least, skin irritation and difficulty breathing. The oil spill waste also contains traces of dispersants, known to be toxic. And the government wants to stand by the claim that the waste isn’t toxic? Dumping these waste in facilities poorly equipped to handle it will result in long term environmental repercussions, in addition to human health  problems.

I’ve written here before about how hazardous waste disposal methods tend to disproportionately impact communities of colour, and how they are most definitely a disability rights issue. Environmental pollution is a disability rights issue, and it’s a social justice issue. Toxic waste makes people sick. Making people sick is not ok, especially when familiar patterns of oppression can be seen in who is exposed to the greatest risks. If this waste is nontoxic, surely it can go in any landfill, and it would make sense to use landfills as close to the coast as possible, right? So the waste travels the shortest distance? What exactly was the selection process behind the nine landfills identified as sites for Gulf spill waste?

BP, like other major oil companies, has a long history of engaging in environmental pollution, including unauthorized dumping of materials known to be toxic. The vast majority of this pollution occurs in communities least equipped to fight it, and when oil companies are caught doing it, often the biggest punishment is a relatively small fine. In this case, BP isn’t being clandestine: the company is being openly invited to dump waste. The claim is that it’s ‘nonhazardous,’ but is it? Even if it’s not toxic, is it really the kind of thing we want leaching out of landfills and into waterways and farmlands?

These communities will be dealing with the repercussions of BP’s dumping well into the future, just like communities all over the world where people are sickening and dying because of toxic materials present in the environment. Just like communities where rates of chromosomal anomalies are skyrocketing as a result of exposure to toxic substances. Communities with limited support systems to help sick and disabled community members are the ones disproportionately facing an increase in chronic conditions and disabilities. A long term policy of dumping toxic pollutants on low income nonwhite communities and refusing to provide support for the consequences sends a pretty clear message to members of those communities, as well as to the rest of society.

We need to be talking about the connection between environmental pollution and racism and we need to be combating plans to dump hazardous waste on low income communities of colour, from protesting clearly racist environmental policy to working in solidarity with communities who are actively fighting toxic waste disposal in their landfills and on their sacred lands.

Vulnerability Indexes, Homelessness, and Disability

(Note: this originally appeared in a modified form on my tumblr.)

Vulnerability indexing is a new trend in homelessness services. It started in LA and NYC but is now being used a bunch of cities and localities of all sizes around the country. Instead of traditional outreach services, these projects use a “vulnerability index” survey to collect data from street-based homeless folks (rather than people in shelters, living in cars, doubled up on couches, etc). The data is then used to rank the homeless people, in order, by their “vulnerability,” or likelihood of dying within the next 12 months if they remain on the street.
That ranked vulnerability list is then used as a priority list to provide the people with services, starting with housing.

In providing housing and services, these programs use a “housing first” model, which means that unlike the vast majority of homeless housing services, individuals are NOT required to be clean of drugs/alcohol or engaged in mental health services prior to moving in. Once they move in, they’re provided with all the supportive services they want, including substance abuse treatment, mental health treatment, education and job training and placement assistance, etc.

I strongly support these programs and have been very excited to see them gaining traction in LA. (we have project 50 in downtown LA, project 30 in the San Fernando Valley, and others pending right now.) I also think these programs are of special interest from a disability perspective because of the extremely high prevalence rates of mental and physical disabilities among the long-term chronic homeless, and the way these disabilities make it difficult, if not impossible, for this group of homeless people to move towards stable permanent housing.

Here are some of the reasons I think this approach makes a lot of sense:

1. It targets the population that needs it the most, re-opens discussions about serving the chronically homeless
These projects target a subset of the homeless population – the chronically homeless. This group is defined as people who have been continuously homeless for at least a year. This is a minority of the overall homeless community (about 23% of all homeless), as most people cycle in and out of homelessness in periods of 3 months or so. The chronically homeless are generally single adults, not families, and generally have some kind of substance abuse issue and/or mental disability and/or physical disability. Most policy analysts believe that nearly every chronically homeless person has either a mental or physical disability.

This population is considered extremely difficult to serve, as lots have tried to engage with services in the past and not found it useful, so are considered “service resistant.” This is a nice way to say that most people and agencies have pretty much given up on them and don’t have any hope of bringing them into services, much less into stable housing. This is also a nice way to say that these homeless folks have correctly figured out that most homeless services aren’t appropriate or beneficial for them, so there’s little point in trying to engage with service organizations. This is partly because homeless services are not really set up for people with disabilities – getting necessary accommodations in a shelter is enormously difficult because of the already extremely limited resources available. If you have PTSD and need a door that locks in order to sleep, a shelter is not for you. If you have a service animal, shelters are not for you. If you need even a minimal level of nursing or medical care, shelters are not for you. (Not that the streets are better at accommodating disabilities.)

These chronically homeless people are, unfortunately but frankly, likely to die. the vulnerability index looks at factors that “place them at heightened risk of mortality,” including 3 or more hospitalizations or ER visits in the last year, aged 60 or above, cirrhosis of the liver or end stage renal disease, HIV+ or AIDS, or co-occurring psychiatric, substance abuse, and chronic medical conditions (tri-morbidity). When this tool has been used in communities, the most vulnerable person identified by the tool usually has all of those risk factors and has been homeless for 20+ years. Can you imagine how difficult it would be for a 62 year old man who is HIV+ and has a physical and mental disability and an active substance abuse problem to enter a shelter, especially after over 20 years of street homelessness?

Traditionally, this group of the chronically homeless is a group that people have given up on. Not just the public, but even homeless service providers. But the first iteration of this program, in the Times Square area of NYC, has produced before and after stories that are flooring. A woman who lived on the streets for 20+ years as a heroin addict is now housed and working as the concessions manager at the movie theater in Times Square. Looking at the before and after pictures seemed like she’d moved backwards in time – she looked 20 years younger. These are the people who we walk by on the street and feel like they’re beyond help and beyond hope. We just don’t think people can come back from that – and these programs are proving that assumption to be absolutely wrong.

Another benefit of focusing on the most vulnerable folks is that it communicates that same message – you are not beyond help or hope, there are programs that can provide meaningful and beneficial assistance – to the homeless community itself. If folks see that the agency promised housing to someone with a substance abuse disorder, a mental disability, and 20+ years on the street, and then delivered on that promise, they’ll be motivated to participate with the agency and trust them in a way they wouldn’t trust the shelters or outreach teams that hadn’t housed that guy in the past. These programs usually see a “tipping point” once the first few, most vulnerable, people are housed – then the rest of the community believes in the promise of potential housing and is motivated to cooperate with the service agency.

2. These programs make economic sense.
These targeted programs are usually seen as an alternative to simply ignoring the homeless and continuing to not spend city and county funds on them. Because there are not a lot of homeless services or programs targeting this group, the perception is that we are currently spending zero dollars on them, and any targeted program will be a dramatic increase in funds directed to the chronically homeless. This could not be more inaccurate. Actually, this group is consuming an astounding amount of public funds, through county health programs, police and jail funding, and public benefits such as food stamps or general relief funds. A recent study by the Economic Roundtable here in LA found that these most vulnerable folks are consuming over $8,000 in county funds PER MONTH, through multiple ER visits, jail time for quality of life infractions, and health care services received in jail. When these folks are moved into housing – even fully subsidized funding with inclusive supportive services – it’s a net savings for the government.

So this popular conception that we’re not already spending a bundle on these chronically homeless folks is simply inaccurate. We, as city and county governments, are already spending an enormous amount of county health funds, justice system funds, and social system funds on this group, with no discernible improvement in their quality of life or life expectancy. (This New Yorker article is a great discussion of how these costs can mount up for a single homeless individual.)

I know that cost savings is likely not the most important aspect of these programs for this audience, but these economic arguments are extremely powerful in persuading localities who do not understand why they would benefit from targeting funds and assistance at the chronically homeless.

3. The overall economic effects of the project help those homeless who aren’t directly targeted.
The economic benefits of these programs mean that there will likely be additional homeless service dollars available for use at other places in the homeless continuum of care – meaning that the program could generate benefits for the non-chronically homeless as well. This is much needed. Currently, in LA, it’s really hard to get into a homeless shelter. that’s because the “emergency” homeless shelters – where you’re supposed to stay for 30-90 days before moving into a “transitional” shelter – are backed up. Because all the transitional shelters are full. Because there’s no permanent housing available, so there’s nowhere to transition to from the transitional shelter. So the transitional shelter is serving as permanent housing and the emergency shelter as transitional shelter and the folks who need emergency shelter … sleep in their cars, or on the floor of a friend’s apartment. This system could benefit from some more cash to build permanent housing – money that might be available were we able to reduce the significant existing county expenditures on the chronically homeless.

4. Housing First and other harm reduction policies make sense.
Currently, a lot of housing placements require that the person moving in be clean and sober and, if they have a mental disability, be actively engaged in mental health treatment services. As you can imagine, this turns into a lot of chicken and egg problems. If you are a homeless person living in LA’s Skid Row, which is overrun with illegal drugs and alcohol, and have no money to afford rehab or treatment, you are never going to be eligible for that housing, even if you actively want to stop using. You don’t have anything to lose while living on the street – even going to jail gets you a bed and some food – so there’s absolutely no incentive to stop using. If you’re likely to die within 6 to 12 months, it’s likely that being high during the interim will be more pleasant than being sober.

If you’re placed in an apartment, though, you quickly learn that ongoing abuse is going to cause financial problems in affording the apartment and social problems in not disturbing other neighbors. There’s also an incentive – you don’t want to lose the apartment. The programs have found that people are motivated to enter treatment when receiving housing, even if it’s not a requirement of maintaining housing. There have been similar results with mental health treatment.

Even aside from the incentive effects, these Housing First programs are humane. I know a bunch of people who wouldn’t be able to get apartments if they had to show clean drug tests to get the apartment and to maintain tenancy, but they’re allowed to do that because they have money.

SO, in short: even though it sometimes feels a bit squicky to be ordering homeless folks in terms of likeliness to die and priority for housing, these programs make a lot of sense conceptually and have had amazing effects on the ground. Of the 50 most vulnerable in downtown LA, all of which had disabilities of some kind, 41 are currently in housing. I don’t see how this could have been done any other way.

CDC Study Reveals Poverty as Major Contributing Factor for HIV Infection

The Centers for Disease Control and Prevention (CDC) in the United States recently released a study showing that in heterosexual communities, people living in poverty are five times more likely than the general population to be infected with HIV. For impoverished communities, where people are living above the poverty line, but not living well, people are two and a half times more likely to be infected.

This just in: Poverty is bad for your health.

Just so we’re all operating on the same page, the current poverty line in the United States is set at an annual income of $10,830 USD for a single person, $22,050 USD for a family of four. There’s a reason I was gravely concerned about the AIDS Drug Assistance program recently. This study shows that people living in poverty aren’t just less likely to be able to access HIV/AIDS treatment, they are also more likely to need that treatment in the first place.

Guess who is most likely to live in poverty in the United States? Black, Native American, and Latin@ populations. People with disabilities. Young people and older adults. We’ve known for a long time that all of these groups are more likely to have health problems as a direct consequence of living in poverty, and this study shows us that poverty is also a key factor in HIV infection rates among these groups. In 23 US cities, we are looking at a ‘generalized epidemic’ in the heterosexual population; that’s a fancy way of saying ‘this is not going away unless we do something about it.’

One obvious solution would be outreach and education programs. Provision of medical care. Access to safer sex supplies. Community education provided by people actually living and working in these communities who can provide that education in an accessible format.

Yet, there are a lot of barriers to doing this. There’s the furor from US conservatives opposed to any kind of community education, outreach, and healthcare when it comes to anything even tangentially related to sex; after all, if we hand out condoms, that’s like saying it’s ok for people to have sex! As Cara Kulwicki points out at The Curvature, there’s also a serious stigma against sex workers when it comes to funding for HIV/AIDS work. Not only do we not want to help sex workers, we don’t want to provide funding to any organisations that work with them.

At Racewire, Kai Wright notes:

Today’s CDC study establishes that the U.S. epidemic is instead best understood as two separate epidemics–one in poor neighborhoods and one in the rest of the nation. That’s because HIV prevalence is a shocking 2.1 percent among heterosexuals in the poor neighborhoods CDC studied. These are explosive findings that ought to fundamentally redefine our understanding of the U.S. epidemic and its gravity.

This study is a stark illustration of intersectionality in action. If we’re going to talk about disparities in HIV infection, we need to talk not just about poverty, but about race, the social structures that cause certain classes of people to be more likely to live in poverty, and the way these systems intertwine.

What the CDC is telling us is that people who live at the intersections of oppression are much more likely than the rest of the population to be infected with HIV, and that this is, in part, our collective fault, for failing to adequately serve vulnerable populations. For failing to address the tremendous class disparities in the United States and for choosing to ignore the clear intersections within those disparities; there is absolutely no reason why entire classes of people should be more likely to live in poverty than others.

Phill Wilson, writing at the Black AIDS Institute, underscores the importance of viewing race and poverty as interconnected, not separate, issues when evaluating the results of this study and the HIV/AIDS epidemic as a whole:

So, the question is: Is race or poverty the driver of HIV in Black communities? We believe this is essentially a difference without a distinction. In America, Black people are disproportionately poor. Almost 25 percent of Blacks live in poverty, compared to 9 percent of Whites. According to a study by U.S. Department of Agriculture, nine out of every 10 Black Americans who reach the age of 75 spend at least one of their adult years in poverty. The uncertainty about why Blacks are disproportionately infected has never been about biological or genetic determinants–or for that matter even difference in levels of risk behavior. It has always been driven by social determinants of health: socioeconomic status, high rates of sexually transmitted diseases, high rates of incarceration, man sharing (knowingly and unknowingly) due to gender imbalances, lack of access to healthcare, lack of a regular health provider and low HIV literacy. These overlap significantly with the issues driving the AIDS epidemic in poor communities of all races.

This study challenges a lot of assumptions about how HIV is understood in the United States. It clearly shows that by focusing on injection drug users and men who have sex with men, we’ve done a tremendous disservice to other communities at profound risk for HIV infection. HIV has been stigmatised from the start, it dovetails very neatly with a number of social oppressions in the United States, and our chickens are coming home to roost now.

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. Continue reading Catch-22 Policies: Medi-Cal and Transplants

Paying For The Recession: The AIDS Drug Assistance Program

Despite the attempts at sunny forecasts being made by commentators, it’s pretty clear that we are in a recession, that we have not hit bottom, and that things are not going to get better soon. In the United States, all of the indicators are pointing firmly toward ‘shit is bad, folks.’ The unemployment rate[1. Notoriously unreliable because it does not include people who have stopped looking for work.] 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.

Bad Behavior, continued: More on School Discipline

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

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

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

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

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

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

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

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

Priority: Share Power with Parents.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

From a post at Change.org:

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

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