Tag Archives: funding

Recommended Reading for 4 June, 2010

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

Clyde, a blind border collie, with his assistance dog Bonnie. The two dogs are lying on the grass together.

This is Bonnie and Clyde! Clyde is a vision-impaired Border Collie and Bonnie is his assistance dog. Photo by Flickr user Lisa, licensed under Creative Commons.

Wheelchair Dancer: What Kind Of Life?

I don’t have the sense that I am kicking back slightly, leaning into life differently, because things matter less/differently now because I am disabled now, because I had a successful life beforehand. I don’t feel on a daily basis that I can let myself off the hook now because I manage to live, achieve, and make it. Disability isn’t a soft position for me. Since becoming disabled, I’ve remade my life, yes, but I have remade it in such a way that it is perhaps fuller and certainly physically harder and less comfortable (at work at least) than it ever has been. My life is more intense. Every small success means more because I have had to work harder for it than I ever had to in my previous life.

Cusp at L’Ombre de mon Ombre: Medical professionals and communication (ETA: Evidently this blog was closed after this Recommended Reading went up? If the author would like me to remove the link altogether, please email?)

Why is it then in such situations I always come to a point, no matter how much I rehearse my attitude and responses, where I feel like I’m at school and must do as I’m told: that I’m standing the in my nice grammar school uniform waiting to have whatever someone else thinks is good for me, done to or metered out to me ? I hate that feeling and hate myself for having that feeling 36 years after I have left school.

Jo Tamar at Hoyden About Town: A month of detention without review

Imagine a world in which you could be held by a government agency, against your will, for up to a month.

If you have a mental illness, that is now a real possibility.

Philip Wen at Sydney Morning Herald: Federal funds frozen for disability enterprises

Funding is regularly reviewed. The last deal was a three-year contract agreed under the Howard government, passing on an effective increase of less than 3 per cent a year. That deal expires next month.

But when the funding for next year was announced in this year’s federal budget, ADEs were in for a rude shock. The government had frozen funding, with no increase for indexation.

Shiva at Biodiverse Resistance: The fuzzy boundaries of accessibility

Both these conversations got me thinking: the first about what exactly i consider venues or events that are inaccessible to me, and whether i would expect my friends to boycott them because of that, and the second about whether it really is possible, even if desirable, to have a personal policy of boycotting all inaccessible events or venues. In both cases, the fuzzy, blurry question is – to me anyway – that of where the boundaries of the concept of “accessibility” lie.

Margery A. Beck at Associated Press: Appeals court: Union Pacific did not discriminate

She said in her lawsuit she did not know the evaluation was a mental health exam, and that Union Pacific used it to change her diagnosis and disability to a mental health condition, rather than a physical one.

Based on the mental health diagnosis, Norman’s long-term disability benefits were terminated, reinstated upon appeal, then terminated again, the lawsuit said.

Am J Cardiol concern-trolling: “But mobility aids will stop them EXERCISING!”

So I stumble across this at Diabetes.co.uk: Mobility Scooters Can Increase Your Risk of Developing Daibetes and Heart Disease

“O really?”, thought I, “I wonder how well-controlled that scoldy little piece of disability panic was?” So I read on.

However, recent research suggests that mobility scooters can do more harm than good by heightening the risk of diabetes and heart disease .

“More harm than good?”, thought I, “I wonder who measured that? How did they decide which effects outweighed which in the goodness vs. badness stakes?” So I read on.

Astonishingly, a study of scooter users in the U.S.A discovered that almost one in five developed diabetes after buying one to get around.

“Huh”, though I. “One in five, eh? Hm, that doesn’t sound all that different from the baseline prevalence in the population, let alone the older/ill/disabled population.” So I read on.

The research, published in the American Journal of Cardiology, highlights how multiple benefits to patients’ health from being able to get around more easily are being erased by the effects on the cardiovascular system.

“Erased?”, thought I. “Completely wiped out? Huh. Was it the people concerned who decided this, or someone else?” So I read on.

Researchers are urging doctors to consider the risks of scooter use before making recommendations to patients invest in a scooter.

“*Doubletake*”, thought I. “Doctors should consider the risks? Doctors? Not, say, people with disabilities? Just doctors? Doctors should weigh up the risks before offering any options at all? Doctors should decide?” So I read on.

[…] There have even been incidents when scooters have killed individuals.

OMG RANDOM IRRELEVANT SCOOTERPANIC!

Moving on.

They recruited 102 patients, with an average age of 68, who had obtained medical approval for a scooter and monitored their health over six years. Even though patients stated that they felt better physically and mentally, tests demonstrated that 18.7 per cent developed diabetes during the follow-up period.

“Erm”, thought I, “Right then. Sure enough, it was an older population- nearly seventy years old on average. The prevalence of diabetes in the population older than 60 in the USA is 23.1%, and that’s not people who are already ill and have other risk factors. That’s not really a surprising number.”

“I wonder,” thought I, “I wonder how that control group did, the age- and disability-matched control group, the one who didn’t get scooters at the same time?”

OH WAIT.

Yeah, there wasn’t one. No control group.

Just a group of elderly people with cardiac failure, neurologic disease, disabling arthritis, and chronic lung disease. Just a group of people with disabilities trying to eke out a life and getting used as a Lesson To All Of Us about the dangers of sloth.

The abstract is here, in the American Journal of Cardiology. Effect of Motorized Scooters on Quality of Life and Cardiovascular Risk, Brian W Zagol and Richard A. Krasuski, Volume 105, Issue 5, Pages 672-676 (1 March 2010).

This sterling little doctor-centric chastisement does contain one really useful piece of information:

[…] significant physical and psychological improvements in all quality-of-life categories (p <0.001) [...]

I’ll say that again, ‘cos they buried the lead. After getting a scooter, people experienced:

[…] significant physical and psychological improvements in all quality-of-life categories (p <0.001) [...]

But the authors decided to slap a big ol’ “DESPITE” before this statement about how the lives of people with disabilities were improved by appropriate mobility aids, and instead go on to list the way several laboratory parameters became “worse” over time in this group of ill elderly people. In a study with NO. CONTROL. GROUP.

We have absolutely no idea how these laboratory parameters would have fared had the people concerned not obtained mobility scooters. All we know is that their quality of life improved significantly in all domains.

What the study fails to recognise – among other things – is that the alternative to getting about on mobility aids isn’t a day of jaunty strolling; it’s immobility. The alternative to going out sitting on a scooter isn’t a doubles tennis match and a brisk swim followed by a bootscooting class; it’s sitting at home.

But the quality of life of PWD, the lack of alternatives, is dismissed by these concerned medicos as a relatively trivial aside; as just one factor for doctors to consider before deciding whether to withhold their blessing – and their financial rubber-stamp – to mobility aids:

In conclusion, interventions, such as scooters, that improve self-perceived quality of life, can have detrimental long-term effects by increasing cardiovascular risk, particularly insulin resistance. Physicians should carefully weigh such risks before approving their use, as well as ensure healthy levels of activity afterward.

Dudes. Newsflash. You’re not the ones who should be carefully weighing this hypothetical “risk”. We are. And you sitting there planning to deliberately withhold mobility aid funding to the poorest people in the population because you think they might – not will, only might – see their blood glucose tweak a few points? Not ok.

You don’t get to dismiss the importance our self-perceived quality of life (“self-perceived”? Who do you think is the best person to assess our quality of life? You?) with a parenthetical “Despite”. What is important to us is important to us; you don’t get to override that with your misinformed concern-trolling. You don’t get to decide on your own, then inform us what’s important in our lives. You don’t get to exclude us from the conversation. You don’t get to tell us which risks are worth taking.

You don’t have the moral right to immobilise us based on your imposition of your own value system on our lives. You wouldn’t even have that right if this was good research. When it’s fucked-up hand-waving? Put the journal down, and start seeing real people. The people right in front of you, who are looking for independence, the ability to shop, the ability to socialise, the ability to go to the fucking doctor, the choice to have a better life. The life you’re planning to say “no” to.

Recommended Reading for November 27

via Elizabeth Kissling at re:Cycling: Mental Illness in Academe

The first question you must ask yourself is whether to tell your chair and dean. I can think of arguments both in favor of that, and against.

One of the pluses would be the psychological benefits of not having a secret and being able to be open. More practically you might be able to get extra support, or formal accommodations under the Americans With Disabilities Act (ADA). You would serve as a model for other academics in your department and your students.

There are, of course, real pitfalls to telling, too. There is a tremendous stigma, still, around mental illness. People may believe, consciously or not, that you are unreliable or even dangerous, and they may fear you. They may think you can’t do the work or your scholarship isn’t good, even if it is very good. That may not be intentional on their part but can nonetheless have a big impact on your work life and your prospects for tenure.

Quickhit: Athlete Kurt Fearnley lambastes abusive Jetstar wheelchair policy

There are lots and lots and lots of problems with the way people with disabilities are treated while travelling. This is just one of them.

Talking About FSD – How Not To (Part 2)

But because folks like she and I exist, people with “Real” medical problems (and here I’m using quotes because I’m not comfortable with claiming my problems are more real & valid than anyone else’s, just because I can back mine up with medical records, which have also been and will continue to have their value questioned anyway,) we are putting everyone else at risk of exploitation by Big Pharma. Because I want treatment for my sexual health problems, I bear the responsibility & burden of enabling Big Pharma sneaking its phallic tendrils into all of our bedrooms & regulating our sexuality. That regulation might come in pill form designed to increase our libidios – but never too much, for if we become too sexual, too promiscuous, we may just be diagnosed with the dreaded Restless Vagina Syndrome.

I was really curious; is Big Pharma really trying to develop and then exploit a new, fake disease, by piggybacking on something that sounds similar to restless leg syndrome? (Only, it’s the vagina that’s restless.) What is this?


Digital inclusion, disabled audiences and web accessibility through personalisation

There are 11 million adults in the UK with a long standing health problem or disability that affects their daily activities including their ability to work – and therefore covered by the Disability Discrimination Act. Of these, according to research from the Office for Disability Issues, 47% are over 65 and 43% are unemployed. Startlingly, 58% have never used the Internet.

Jonathan talked about the various barriers to disabled people getting online including lack of interest, lack of means and lack of confidence. These are the same reasons as for the population at large. BBC research into encouraging broadband adoption echoes the experiences of Martha Lane Fox. They focussed on the 21% of UK adults who do not have the Internet at home or use elsewhere. The figures are similar: 10.5 million aged 15+ with and average age of 61 (over half were 65+) and 67% are C2DE compared with 45% of the UK population.

Only one in five disabled students has received vital funding [UK]

Government statistics released today show that the SLC has so far distributed £43m less in funding than last year, despite an unprecedented rise in student numbers – and applications for grants and loans – in the past 12 months.

The Guardian has learned that more than 12,000 disabled students have also been left without vital funding for specialist equipment and to pay fees for personal helpers. Campaigners are now claiming progress is so slow that it would take 75 weeks to clear the backlog.