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.

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.

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.

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.

Recommended Reading for June 3, 2010

Two totally adorable golden lab puppies with floppy ears, wearing blue cotton bandanas with the tag "Service Dogs."
Two totally adorable golden lab puppies with floppy ears, wearing blue cotton bandanas with the tag "Service Dogs."

Service puppies in training!!

Miami Herald – Embedded therapists protect National Guard members’ mental health

Roger Duke is a Vietnam veteran, a retired Marine lieutenant colonel and a licensed marriage and family therapist. Since 2006, he’s spent at least one weekend a month embedded with a California National Guard unit. Duke, 57, wasn’t deployed with the unit’s soldiers in Iraq and Kosovo, but he’s a trusted face whom the soldiers confide in before and after their deployments. “Some of the best conversations I have with them are at one in the morning in a Humvee during a training exercise,” said Duke, who’s part of a California program designed to help returning Guard and Reserve members by attaching mental health counselors to their units.

Threadbared – Hanky Pancreas: insulin pump accessories and cyborg embodiment [this post was so nuanced and complex and beautifully written that I hesitate to even do a pull quote because I strongly (strongly) encourage you to click through and read the whole thing]

Floeh’s designs permit wearers to make a strategic double-move around camouflage and visibility, simultaneously hiding the pump and drawing attention to its location (i.e., waist, hip, bustline). When I’m in disability-pride mode, I’m troubled by this kind of hiding, following the logic that visibility is good (i.e., wearing the pump on the outside makes us legible, shows the limits of clothes designed for bodies without peripherals, disrupts conventional, hetero feminine gender presentation) and hiding is, well, hiding, with its affective companions: shame, fear, desire for normalcy, willingness to pass.

But visibility is only one tactic among others, and hiding the pump can also be a radical act – especially if it facilitates feeling-good-while-diabetic (for example: the best act in my burlesque repertoire hinges on repurposing a strap-on harness as an under-dress pump-holder; most of the time, my solution to the dress-problem is a jury-rigged system involving a black garter with small cosmetics pouch from Benefit, bra straps, and safety pins to keep things from sliding down my leg – unless I’m already wearing a garter belt). Of course, in the case of hiding or disguising one’s pump, feeling good can also mean feeling closer to a conventional femininity and mythic norm. I don’t want to elide that possibility, but I also return to the reality of living with chronic illness: that we live in a space of contradiction, that we work with what we have & do what we need to do to claim our (sick, cyborg, incurable) bodies as desirable. In my ideal world – one I suspect Floeh wants, too – we’ll recognize that transformation can (and should) mean more than transforming the pump, or the wearer’s relation to it, to align more closely with a dominant, normate feminine ideal. Creating, enabling, accommodating, and celebrating a multitude of diabetic, cyborg embodiments — and advocating for wider access to the pump (with all of its troubling potential) for those who are uninsured and can’t afford the $6000 price tag — these are the kinds of social transformations that need to happen in conjunction with personal ones.

BBC News – Mental health research is ‘incredibly underfunded’

Only 5% of medical research in the UK is into mental health, despite 15% of disability resulting from disease being due to mental illness.  Last week, one of the major research funders, the Medical Research Council, published one of the most up to date reviews of the strengths and challenges of mental health research in the UK. It not only showed that the research that does get funded is world-class but that the UK is well-placed to lead the way in this area. The review concludes that there are several opportunities to fund more research in the UK that would help accelerate progress in developing new treatments, or lead to better ways of preventing mental illness in the first place.

7 News Denver – Is Xcel’s Tiered Rate Program A Surcharge On Disability?

Xcel Energy’s new tiered-rate program [for electricity] began Tuesday. Customers whose lives depend on electricity aren’t given an exception. Xcel users who need electricity 24 hours a day to power oxygen tanks or ventilators have to pay the same usage costs as someone who wastefully keeps on their air conditioning.”That’s what the problem is, it’s basically a surcharge for disability,” said Julie Reiskin, executive director of Colorado Cross Disability Coalition.Reiskin told 7NEWS her organization was never notified by the Public Utilities Commission prior to the tiered-rate system decision. The PUC oversees Xcel.”I was shocked we did not know about it,” said Reiskin. “It’s disturbing that the PUC saw fit to get input from Xcel, but not from the people who are directly affected by this.”

A Happiness That Forgets Nothing – You know what? I take back that shit about not hating people.

SO. My brother—my clinically depressed brother—was met by police today. You know why? Because he mentioned to his friends that he had suicidal feelings. So what did they do?
CALLING THE POLICE, TELLING THEM WHERE HE WORKS, AND HAVING HIM HOUNDED BY THEM ABOUT HIS PERSONAL FEELINGS IN FRONT OF HIS COLLEAGUES.
I am in tears right now. Enraged tears.
My brother has a mental illness. But he is still an autonomous, competent fucking person. He can make his own goddamned decisions without alleged friends having  him hunted down like a fucking criminal.

[and finally, a mystery in which I ask for your assistance! I have seen several blog mentions of this thing – product? service? – called ‘Buddy’ that has a contract with the NHS and is supposed to help people with disabilities and I cannot understand it! Perhaps you can help?]

Buddy is a post-digital social care service that seeks to improve the well-being of people living with long term conditions, and at the same time, reduce the cost of service provision. At the heart of Buddy is a social media radio which lets users broadcast from a physical device, to a range of social media platforms. By using social networks, Buddy extends the community of carers around an individual beyond healthcare professionals, to friends, families and peers. Our idea is to decentralise and socialise care, creating a more people-powered service, where friends and families are working alongside professionals to support individuals, in real time. Co-production is the jargon.

Where About Us But Without Us Leads

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

Dr Torrey and TAC will tell you Mr Goldstein had untreated schizophrenia. They’ll tell you people like him are dangerous, they’ll tell you people like Mr Goldstein are often so sick they don’t understand they’re ill and need treatment, and they’ll tell you they know best. They won’t tell you that Mr Goldstein had been seeking treatment desperately and been turned away repeatedly.[1. Source: Time Magazine, “Will the Real Andrew Goldstein Take the Stand?”] Continue reading Where About Us But Without Us Leads

Recommended Reading for I Can’t Believe May is Almost Over!

I mean, where does the time go?!

A dark body protrudes from the left, with many thin tendrils along it, showing orangey red.
A dark body protrudes from the left, with many thin tendrils along it, showing orangey red.

Second-harmonic generation microscopy image of a primary cultured Aplysia neuron stained with the membrane dye DHPESBP. The signal is modulated by membrane potential and was found to be capable of recording action potentials with 0.6 µm and 0.833 msec spatiotemporal resolution. The high-resolution and deep tissue imaging capability of this nonlinear microscopy technique should prove valuable to future electrophysiology studies. (Journal of Neuroscience) [Not entirely sure what all that means, but I find the brain endlessly beautiful and fascinating.]

Diary of a Schizophrenic – Little Girl

I am writing this to you because I want you to remember.  I want you to remember that you love unicorns and crystals, pinned butterflies and christmas beetles, love hearts and sea shells, sequins and puppy dogs. You feel special you have your ears pierced even though you are only six and you already know Santa isn’t real.  You love fairies but don’t tell many people because you are tough and like playing with the boys. You can catch and throw a ball and love to dance.  Dressing up will always be your favourite even when you’re big. Even though somewhere deep in side, you are sad, you love a lot and you see beauty everywhere.  You are smart and quick and can already talk the tail off a donkey.  You question everything and most people do not realise your careful quiet soul. One day, when you are older, you are going to lose your mind.

Pulse Media – For Enlightened White Guys [a useful set of tips for anyone participating in a group in which they have privilege]

5a. Count how many times you put your ideas out to the group.
5
b. Count how many times you support other’s ideas for the group.
6
. Practice supporting people by asking them to expand on ideas and dig more deeply before you decide to support the idea or not.
7
a. Think about whose work and contribution to the group gets recognized.
7b. Practice recognizing more people for the work they do and try to do it more often.

Boston Herald – Disability Group Faults Massachusetts on Water Crisis

An advocacy group for the disabled today filed a federal civil rights complaint with the Department of Justice over the state’s handling of a drinking water crisis earlier this month. The complaint made by the Disability Policy Consortium says the state wasn’t prepared to adequately respond to the needs of disabled and elderly people when a water main break left nearly 2 million eastern Massachusetts residents under an order to boil their water for several days.

All Africa – Nigeria: Yuguda Makes Case for Children With Disabilities

FIRST Lady of Bauchi State, Hajiya Abiodun Isa Yuguda and Founder, Challenge Your Disability Initiative, CYDI, yesterday at 2nd Vanguard Children’s Conference, called on corporate organisations across the country to learn to include children with disabilities in their programmes as part of efforts to show love and care to such group in the society. Addressing the children at summit held as part of exercise to mark this year’s Children’s Day celebration, Mrs Yuguda said children with disabilities should not be left out in programmes, particularly, programmes that would help shape their lives as future leaders.

AP – Spike in Disability Claims Clogs Overloaded System

Nearly 2 million people are waiting to find out if they qualify for Social Security disability benefits. It will be a long wait for most, even if they eventually win their cases. The Social Security system is so overwhelmed by applications for disability benefits that many people are waiting more than two years for their first payment. In Ohio, Michigan, Minnesota and other states, the wait can be even longer.

Penhurst Asylum Archives. No excerpt, just a recommendation to browse the astonishing range of original source documents available at this archive of Penhurst State School and Hospital, which was surrounded by and eventually closed in response to allegations of abuse and neglect. A lawsuit after the facility closed led to a Supreme Court decision establishing that people who are involuntarily confined are entitled to “reasonably safe confinement.” The site is a testament to those who were subject to conditions that nobody could call reasonably safe. There’s some interviews and personal accounts, papers documenting problems at the hospital, and even redacted patient reports.