Category Archives: class issues

Disability Is A Feminist Issue: Gendering Health Access

When I tell people I write for a feminist site focusing on a disability issues, one of the most common responses I get is confusion. ‘What does disability,’ people ask me, ‘have to do with feminism?’ I’ve written before, very topically, about why disability is a feminist issue, and I’d hope that a lot of the content on this site backs that assertion up, considering that we’ve talked about a number of issues considered important in the feminist movement, like reproductive rights and rape, just to name two examples.

But I’d like to spend a little time drilling down into some specific aspects of disability and living with disability that tie in with feminism, very strongly, because I continue to encounter pushback when it comes to integrating disability into conversations about feminism.

Today: Gendering when it comes to access to health care and disability services. Gender inequality is a core issue in feminism and it can be seen especially clearly when it comes to disability issues, which is one reason I’m always surprised to see that people don’t consider disability a feminist issue. I’m not talking here about the gendering of disability itself, which also occurs and is a separate issue that really needs its own post to do it justice. I’m discussing gendering when it comes to who can access health care and what kind of health care people can access, and how that plays out for people with disabilities.

Let’s start with the fact that, in the United States, to access health care, you need money. You need money to pay out of pocket, or you need money to buy insurance, or you need the kind of job that includes insurance as a benefit (we’ll talk about who can access government assistance, including health care, in a moment). Guess who is likely to have less money? Women. Women of colour and nonwhite women in particular are on the bottom of a pretty incredible income disparity as a result of intersecting oppressions. When women get sick, when they are injured, when they acquire disabilities, they are less likely to be able to access treatment because they cannot afford it, they are less likely to be able to adhere to treatment because over the long term it is expensive, and they are more likely to experience complications because of issues like caring for children, trying to deal with poor access to food, and other things while also trying to get better.

Outside the United States, money can still be a profound determiner when it comes to accessing health care, because money is tied in with so many things. People with money are more likely to have pursued advanced education, to be informed about health issues, including the early warning signs of conditions in need of treatment. People with money can access care the government doesn’t cover, can afford private hospitalization, can pursue treatments that cost a lot of money, and can persist through a health crisis when it comes to demanding and getting treatment. People with money can afford that supplemental private insurance that may make the difference between being turfed off in a corner somewhere and given actual treatment. Money talks, worldwide, and women are less likely to have it, less likely to hold it, less able to earn it.

But, but, poor women can go on government assistance! Then they don’t need money to pay for health care, so everything is ok. Yeah, except, the income standards for government assistance are hopelessly skewed and hopelessly wrong. Women have to be not just poor, but really poor to quality for government assistance, and they have to stay poor. Disabled women who apply for government benefits must be willing and able to jump through a number of hoops on command; they need to pull together reams of supporting documentation, to prove they are disabled enough, and guess what the government really doesn’t like paying out benefits on? Conditions like Chronic Fatigue Syndrome and fibromyalgia, which disproportionately impact women and are often dismissed as ‘not real disabilities,’ so even after doing everything right, these women might still be denied benefits.

For women who can get on disability, it’s a lifetime of poverty. The government has very strict limits about income and assets for people receiving benefits, which means that disabled women can only work very limited hours, can’t save money, and certainly can’t own any meaningful assets. ‘But they don’t need to, they’re on benefits.’ Well, poverty tends to intersect rather dramatically with a lot of feminist issues; how do you escape an abusive partner or caregiver when you have no money in savings and you can’t afford a hotel, a deposit on a new place, bus fare out of town? How can you plan for your future when you can’t save any  money? How can you pay for treatment the government doesn’t cover when you have no funds? How do you buy the meds everyone says you have to take to be a ‘contributing member of society’ when they cost hundreds of dollars every month and the government delays your benefits for mysterious reasons all its own?

Accessing health care also requires time. You need the time to sit on the phone to make appointments. You need time to go to the doctor’s office for evaluation, time to go to the pharmacy to pick up prescriptions, time to perform prescribed exercises at home, time to argue with insurance companies about benefits. Time is something women tend to lack access to because they’re often juggling a myriad of tasks. Or they’re working in the kinds of jobs where asking for time off to get medical care is frowned upon. Or they’re working multiple jobs to afford to stay alive and can’t figure out where to fit a doctor visit into their schedule. Or they have young children whom they can’t leave alone, but can’t take to the doctor, either.

And let’s talk about the fact that a number of health conditions are underdiagnosed or diagnosed too late in women as a result of gendered ideas about who gets what. Heart attacks, for example. Are often not diagnosed in women both because they are believed to be a ‘male’ health complaint, and because heart attacks in women present differently than they do in men. This means that women are more likely to experience complications from heart attacks, if they survive, because they weren’t identified early enough.

Drilling down, we can see that certain classes of people wait longer for treatment and are often provided with inadequate care when they do receive it. Often, women are among these groups; for instance, women of colour/nonwhite women and poor women tend to experience delays in accessing breast cancer treatment.  It’s notable that breast cancer is a very popular social cause, yet there are still significant disparities in terms of who can access diagnosis, treatment, and support for  breast cancer.

This is a feminist issue. Women are dying, right now, all over the world, because they can’t get the care they need, and when they access care, they are treated unequally. For women with disabilities, the gendering of health care access creates a lifetime of barriers that don’t need to be there, from being told you ‘aren’t really’ disabled to being denied care on the grounds that the problem you’re having ‘doesn’t happen to women so it must not be happening.’ Gender disparities in health care access and treatment have very real and meaningful consequences for women who are sick, as well as disabled women. They can literally be the difference between life and death.

Tell me that’s not a feminist issue. Go on.

Recommended Reading for 1 November, 2010

Welcome to November. Gentle reader, be cautioned: comments sections on mainstream media sites tend to not be safe and we here at FWD/Forward don’t necessarily endorse all the opinions in these pieces. Let’s jump right in, shall we?

Queen Emily at Questioning Transphobia: attacking the already vulnerable:

In the UK, people with disabilities have been among the hardest hit by the recent Thatcher 2.0 ConDem cuts of the Osborne Review. The employment support allowance (ESA) which was previously able to be claimed until the person finds a job has now been set with a limit of one year. I’m sure that’ll be of great comfort to people, cos disabilities also expire after year amiright?

It’s election time in the United States. Melissa Mitchell at Service Dogs: A Way of Life: Cast your vote November 2.

I ask you, my loyal readers how can we as a community expect our current rights to continue to be protected, our equity as members of society to be validated, or our issues to be seen as important when we are not seen as a community that votes?

Also, Leah at Cromulent Words: Voting and Privilege:

And what do you need to do after you’ve recognised your privilege of voting access? You can either use your privilege to uplift the people you oppress or you can ignore it and continue to harm (directly or indirectly) the most vulnerable people in our country.

New South Wales, Australia: ABC News: Thousands rally for disability services funds

The State Government committed funding for disability services five years ago under the Stronger Together program, but money for the next five years has not been included in the forward estimates of the next budget.

Times of India: Sleep disturbances ups work disability:

A new study, conducted by the Finnish Institute of Occupational Health in collaboration with the universities of Turku and London, has revealed that sleep disturbances increase the risk of work disability and may slow the return to work process.

That’s all for this time. Send your links to recreading[@]disabledfeminists[.]com. Let us know if/how you want to be credited.

I Wish I Could – But I Won’t Let Myself

I have had an extremely long day. I barely ate lunch and then worked through what should have been dinner. And now I’m tired and cranky and hungry and there’s not really any food in the house because I’ve been busy and tired all week and so haven’t made it to the store.

It would be amazing to order some food. But I have a major block and cannot, do not, order food for delivery. To me, it feels so indulgent and spoiled and a waste of good money that I just cannot let myself do it. This is a completely irrational block – I do plenty of things that are more expensive and do me less good. (For example, my new laptop didn’t need to be so shiny and zippy – and I’m not sure I really needed one at all.)

Instead, I ate two bowls of cereal and a big handful of chopped walnuts. Meh.

Is there any kind of help or accommodation or similar that you just can’t let yourself accept?

Today in Journalism: Arnieville

Back in May, I wrote about the rampant slashing of the sections of California’s budget pertaining to disability services. abby jean has also written about how California structures social assistance programs and their funding.  These are issues seen not just in California, but across the United States, where states are struggling to come up with ways to provide services while facing falling revenues and funding shortfalls in every direction. The most vulnerable populations in many states are the first to face cuts, and some of those people have decided to fight back.

Which brings us to Arnieville1. In June, disability rights activists occupied a traffic island in Berkeley to fight budget cuts. The Arnieville protests continued off and on throughout the summer and protesters led demonstrations in other areas of the state as well, leading to things like arrests in Sacramento.

Arnieville put disability rights issues front and center. People passing by couldn’t help but notice a large encampment of people with disabilities, and their numerous signs, protesting policy and budget cuts. It was a very in your face protest, and it makes sense that such a thing would take place in Berkeley, a city long known for its active disability community and disability rights activism.

Yet, if you rely on mainstream media for your news, you wouldn’t know about Arnieville. A search on the website of the San Francisco Chronicle, one of the largest Bay Area newspapers, for ‘Arnieville’ returns no results. Likewise with the Press Democrat, a smaller regional paper that still manages to find time to cover other local news. The Los Angeles Times, an award-winning California newspaper with a long history of investigative journalism and coverage of both disability issues and the California budget, also has absolutely no coverage of Arnieville.

If you don’t follow the disability community in the Bay Area closely, you probably wouldn’t know about Arnieville. Unless you happened to read independent media like IndyBay, The San Francisco Bay View, The Berkeley Daily Planet, or New American Media. Coverage in the East Bay Express, SF Weekly, and San Francisco Bay Guardian, three farily large independent media outlets? Nil. Zero results. Coverage on radio and television news is a little more difficult to track as I can’t search through months of broadcasts as conveniently as I can through months of print media, but I suspect coverage has been relatively minimal, if not nonexistent, with the exception of KPFA in Berkeley.

Arnieville is news. People with disabilities camping out in a traffic island to protest budget cuts, to demand independence from institutionalisation, to challenge social policy, is news. Yet, most of California’s media is completely ignoring the Arnieville protest, let alone its implications. This is typical. Disability issues are rarely covered in the media and when they are, it’s usually in a very patronising, frustrating kind of way.  An article on budget cuts, for example, might focus on interviewing parents of children with disabilities instead of interviewing the children themselves, or interviewing adults with disabilities.

Activists from other movements are profiled in the news in California. Protests demanding everything from clean energy to better accountability in police brutality cases are covered, extensively, as they should be. Because protest is one of many legitimate forms of communication with the government, and newspapers have an obligation, and a mission, to report on issues of interest to citizens. Disability rights is an issue of interest to many California citizens, not just people with disabilities, yet, the media seems very disinterested in covering it.

What about Arnieville isn’t newsworthy? The Los Angeles Times had no problems covering a tent city in Sacramento in March of 2009. A whole series of articles was run, including profiles of members of the encampment and a number of very strongly written editorials about social responsibility, budget crises, and public shaming. But a disability rights protest in the form of an encampment on public land? Not even a stray word.

One of the reasons our lack of visibility in the media makes me angry is that the general population is often unaware of the issues that affect us, and of the long history associated with many of those issues. It’s extremely hard to fight social attitudes when the media either ignores us or reinforces its social attitudes with its coverage, instead of debunking those attitudes through news stories. Arnieville conflicts with a lot of beliefs about people with disabilities, and I suspect that’s part of the reason why it hasn’t been covered in the media, because it threatens established social attitudes.

To cover Arnieville might suggest that the protesters have a legitimate grief and have something important to say. It might even hint that some people with disabilities are not happy with the current state of social services. That people with disabilities do not want to be institutionalised and have the capacity to live independently. That people with disabilities have a right to live, have a right to participate in governance, have a right to voice their objections to policy that harms them. These are scary, scary things to many nondisabled people, which is why they are being swept under the carpet.

  1. A reference to encampments established during the Great Depression by people who lost everything, nicknamed ‘Hoovervilles’ after President Herbert Hoover, blamed for the policies that led to the catastrophic economic collapse; in this case, the camps are named for Governor Arnold Schwarzenegger of California.

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?

An open letter to non-disabled people who use disabled parking spaces

Dear abled/non-disabled people without disabled parking placards who use disabled parking spaces anyway,

I don’t care if you want to use the space “because it’s so convenient.”

I don’t care if you only “need” to use the space “just for a minute.”

I especially don’t care if you back up your illegal use of said disabled parking space with some bizarre justification like, “But some people FAKE being disabled to get these permits, so what’s the difference?” or “Well, if a person in a car with a blue placard shows up, I’ll move” or “But there isn’t anyone disabled who needs to use the space here right now, so what’s the harm?”

The harm is that I or other disabled people are so often witnesses to your saying these things, and we are presumably expected to not react at all to your taking advantage of something that is not for you. I personally do not own a motor vehicle, so while I don’t need a disabled parking permit, I also don’t need your entitlement complex and your basically telling me — a person with disabilities — that some of the regulations intended to benefit me and people like me are rules that can be bent by you if it’s the most convenient option for you, an able(d) person.

Just don’t do it. It’s illegal and carries penalty of a possible fine for a reason.

This sort of legislation? Is not intended to benefit you, or be a convenient thing that you can take advantage of when you feel like it. Most of the world is already set up for you. These “convenient” parking spaces don’t have to be set up for your use, too.

Predatory Lending and Health Services

Here in Los Angeles, we’ve recently witnessed an explosion of billboards, radio ads, and other solicitations for people to get weight loss surgeries. The ads make it sound so attractive – “let your new life begin, call 1-800-GET-SLIM!” And each of the billboards prominently advertises that they accept payment from Medi-Cal (CA’s Medicaid program) or Medicare, as well as other forms of insurance. As one of the LA Times articles about the phenomenon notes, “the lap-band campaign seems to be some kind of marketing watershed — I’ve never seen anything promoted so ferociously on the L.A. freeways.”

So what’s the problem? People who want lap-band surgery can now obtain it, and get it covered by insurance. No big deal, seemingly. Until you dig a little deeper to see who is behind this push, like the LA Times did:

The people behind TopSurgeons are the Omidi brothers — Julian, whose medical license was revoked in 2009, and Michael, who was placed on three years’ probation for gross negligence in 2008,according to the Medical Board of California.

* The inspectors found unsanitary conditions in the surgical areas. Medications and supplies to treat complications from anesthesia were expired or missing, though 23 patients were waiting for surgery.

* Surgical instruments weren’t being properly disinfected. Medical supplies that were supposed to have been tossed after use on a single patient were being reused. Two employees had positive tests for tuberculosis, but there was no record that they got required follow-up chest X-rays.

* The crash cart, which carries equipment and supplies for cardiac emergencies, contained opened and expired drugs and supplies, including some more than 4 years old. Other drugs and supplies, including emergency drugs, were months or years past expiration. Filled and inadequately labeled syringes were found in the operating room. Most of the scrub sinks weren’t working.

* Patient records, which contain such confidential information as psychological exams, were left where unauthorized people could read them.

Um, wow! That sounds like a safe and well-organized and overseen place to undergo major surgery under general anesthesia! But at least the people who are undergoing surgery really need it and it will significantly benefit their health, right? Well, no, says the LA Times:

Medical guidelines endorsed by the National Institutes of Health say the prime candidates for the lap-band are morbidly obese patients, defined as those with a body mass index — a comparison of weight and height — of 40 and above. (A 5-foot-10 person would register a 40 BMI at 279 pounds, or about 100 pounds overweight.) Patients with a BMI of 35 (244 pounds for our 5-10 subject) would be candidates if they also had weight-related conditions such as diabetes.

The patient selection principles of TopSurgeons seem to be rather liberal. Its website says it “can help those with a BMI of 27 or greater.” (For our 5-10 patient, that’s a threshold of 188 pounds.)

There are two problems with those broad patient selection rules. First, patients who do not really qualify for the procedure and who are not expected to benefit from it are undergoing major and potentially life-threatening surgery for no good reason. Second, the insurance companies base payment off those NIH criteria, so are not likely to pay for surgery for those folks who opt for surgery but do not meet the NIH guidelines. Given the marketing push, the tie to fat shaming, and the extremely liberal acceptance guidelines of these doctors, a majority of their patients are likely to be considered “voluntary” and thus not eligible for insurance coverage of the surgery.

This surgery costs around $18,000. So if insurance isn’t paying for it, who does? Most of the people targeted by these billboards and ads are low-income and predominantly Spanish-speaking, so don’t just have $18,000 in their checking accounts to pay for this surgery. Instead, they’re offered credit lines to cover the cost of the surgery – and charged 13.9% interest on the costs.

That kind of predatory lending would be bad enough if it were limited to people who actually opted to undergo the surgery. But the entire operation seems to be an effort to get people to sign up for financing:

According to Nancy Wambaa, a 51-year-old Los Angeles woman, TopSurgeons “encouraged” her during an office visit last year to fill out an application for the card just to check her credit. A full-time student and Medi-Cal enrollee, she was surprised to be told within hours that she’d been approved, and even more surprised a month later to get a bill for $15,000 from GE, even though she had told TopSurgeons that on her doctor’s advice she had decided against the surgery.

TopSurgeons eventually refunded $12,000 but kept $3,000 as a “cancellation fee.” She sued the Omidi brothers in state court Aug. 20, 2009, alleging breach of contract, breach of fiduciary duty and violation of the state consumer protection law. The court file indicates that they never answered her lawsuit, and in December she won a default judgment for the money.

Nothing like being billed $15,000 at 13.9% interest for a medical procedure you did not sign up for and for which you had no actual medical need!

Quoted: Tim Wise

Research has found that students of color, especially African-Americans, are disproportionately likely to be classified and labeled as learning disabled and placed in special education programs. This is especially the case for more subjective categories of disorder and disability, like emotional disturbance, rather than for medically diagnosable disabilities. The tendency to categorize students of color in this way owes less to genuinely greater levels of disorder in such students than to the racial dynamics of the schools they attend[. . .]in Arizona public schools, males of color at mostly white schools are two-thirds more likely to be labeled as emotionally disturbed or learning disabled than minority males at mostly minority schools, even though the latter are far more likely to have grown up in poverty, and thus could be expected to occassionally demonstrate emotional or cognitive impairment. This suggests that at whiter schools, teachers are more apt to see dysfunction in black and brown students, not because they necessarily demonstrate more of it, but because of the teachers’ own inabilities to relate to the students of color, or because of various unconscious biases.

[. . .]

Although the labeling itself [of students as emotionally disturbed or mentally disabled] is not the cause of [some] students’ failure to complete their schooling, it creates a set of expectations and stigmas for those so labeled that can supress the drive to achieve academically. Nationally, for instance, research has found that students labeled as mentally handicapped or emotionally disturbed are likely to be placed in restricted learning environments, despite evidence indicating that such students need exactly the opposite in order to thrive.

–From Colorblind: The Rise of Post-Racial Politics and the Retreat From Racial Equity (City Lights Books, 2010)

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.

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.)

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