Tag Archives: independence

Recommended Reading for November 9, 2010

John Keilman for the Los Angeles Times: Technology opens new horizons for disabled

Yet for all of technology’s promised advances, some worry that the cost will keep helpful devices out of many people’s reach. Others are concerned that governments, schools and institutions might think that high-tech gadgetry has relieved them of their responsibility to serve the disabled.

“Technology is not a solution for every problem,” said Paul Schroeder of the American Foundation for the Blind. “It doesn’t replace the need for quality teaching. It doesn’t replace the need to teach social skills.”

Crazy Mermaid at Bipolar: Crazy Mermaid’s Blog: Paranoid Schizophrenia: Worst Disease in the World

During the tail end of my psychotic break with reality, I came to believe that there were zombies after me, ready to kill me in order to take over my body. My fear of them taking over my body eventually became so great that I decided to go to the local hospital emergency room, where I thought I would be safe from them.

Liz Sayce at RADAR Network: Health and safety: Stifling disabled people’s independence?

As politicians queue up to cite ever more ludicrous examples of health and safety excesses – making kids wear goggles to play conkers, cancelling historic Gloucestershire cheese rolling events, stopping trainee hairdressers having scissors – those of us living with health conditions or disability sometimes hesitate about which side of this argument we are on.

On the one hand, selected stories like this, designed to justify scrapping regulation, can – as the NASUWT just put it – play politics with children’s safety or put workers at greater risk. On the other, there is a massive history of health and safety being used as an excuse to stop disabled people from doing things. So – whilst I hesitate to join all the people selecting examples of health and safety excesses – we do need to look them in the eye.

Irish Deaf Kids: The Salamanca Statement and EPSEN Act (2004)

A key point:

“regular schools with this inclusive orientation are the most effective means of combating discriminating attitudes, creating welcoming communities, building an inclusive society and achieving education for all; moreover, they provide an effective education to the majority of children and improve the efficiency & ultimately the cost-effectiveness of the entire education system.”

allama at give the feminist a cigarette: Women as sociological ducks

In The Dustbin of History, Greil Marcus warns of the risk of losing sight of individual genius when talking about the blues: yes, it was created in response to slavery and oppression, but centuries of slavery and oppression only produced one Bessie Smith. Seeing Strange Fruit as the inevitable product of the horrors of American history denies the incredible personal achievement of Billie Holiday. And painting female depression as simply a product of the patriarchy denies the personal experience of mental illness to every single sufferer.

incurable hippie at Where’s the Benefit? Round-Up Post

There are plenty of must-read articles and blog posts which I haven’t had the time or the spoons to cover. All of the following are well worth a look.

Design Changes For Accessibility: Fueling Stations

Every day, millions of people around the world glance at their fuel gauges, realise they are low, and pull into a fueling station to fill their tanks. Some of those millions of people are disabled, and thus, I wonder why it is that fueling stations are designed so inaccessibly when relatively simple design changes could be implemented to improve accessibility.

There have been a lot of great discussions in comments here about driving while disabled, as some people with disabilities drive and others do not, but I think we can all agree it’s rather hard to drive on an empty tank (or empty charge, as the case may be).

The fueling process here in the United States at a self service station generally requires that you pull up to a pump, get out of your vehicle, and access a control panel that is only reachable to a standing person. Then, you have to pull out the nozzle, choose a fuel mixture, usually with buttons that are also only accessible to standing people, and fuel up. I assume that the process is similar in many other regions of the world, but I may be mistaken.

Our station has disabled call buttons with the familiar blue wheelie symbol, with a brief note next to them explaining accessibility procedures that I read the other day while I was slaking my car’s eternal thirst for petrol.

According to the signage, fueling stations in the United States are required to help people with disabilities fuel their vehicles if customers are unable to do so independently. Customers must be charged the self service fuel price, not pay for full service, and the station is required to post signage providing information to disabled customers about how to get fueling assistance.

But. If there are no personnel on site, as often happens in the middle of the night, when stations basically run themselves, stations are not required to provide assistance. Likewise, ‘a service station or convenience store is not required to provide such service at any time that it is operating on a remote control basis with a single employee,’ according to the Americans With Disabilities Act guidelines for fuel station accessibility.

So, if you cannot fuel your car independently because of the way the equipment at the fueling station is designed, and you are not traveling with someone else, you are expected to rely on the kindness of the station for help. If there’s no employee at the station or the employee can’t provide assistance, you are supposed to…what, exactly? Hope that there is another customer there who can help you? If it’s the middle of the night, you’re supposed to…hand some random stranger your credit card to swipe it in the console you can’t reach?

As I see it, there are several concerns with fueling station design.

One is safety. I know that there are very strict guidelines about how stations can be built and arranged, designed to reduce the risk of fires, explosions, and other problems. For example, there are bollards next to the pumps to prevent people from hitting them as they are pulling up. Likewise, the vapor capture design on most fuel nozzles, which can make them challenging to use, is also required by law.

Another is customer friendliness. In most regions, people can choose from several fueling stations, so there need to be design features, as well as pricing decisions, that appeal to potential customers to encourage them to choose a specific station. People with disabilities are also customers, and designing accessible stations seems to me like a good business decision, in addition to, you know, being something that should be common sense.

Forcing people with disabilities to rely on other people in a situation like this is not really, to my mind, ‘accessibility.’ Like lots of other drivers, people with disabilities sometimes drive alone, sometimes drive late at night, and sometimes run out of fuel at inconvenient moments. Making it functionally impossible to fuel up when there are changes that could be implemented to allow people to fuel up independently is simply not acceptable. It’s also not really reasonable to demand that people like full time wheelchair users schedule their driving trips around fueling station convenience.

One simple change that could be made: Lowering the control console to a height accessible for a wheelchair or scooter user. To my knowledge, this would not conflict with fueling station safety needs. However, I am not a fueling station architect or an expert in the building code as it pertains to fueling stations, so I could be wrong.

Another change that might be a bit trickier to implement: Design fuel nozzles that are lighter and easier to use. This is more challenging because of the legal and safety requirements, but it seems like with some creativity and focused engineering, this should be possible. Most nozzles are already usable with one hand, which is a good start.

What are other accessibility issues you identify at fueling stations? How do you think they could/should be addressed?

Recommended reading for May 11, 2010

sqbr at Poking at Thorns (with gloves on): Disability in Speculative Fiction: Monsters, mutants and muggles

Fiction reflects social attitudes, and the social attitudes to disabled people tend to suck. Disabled people are presented as scary, pathetic, exotic, demanding, laughable, etc. But some tropes are popular/unique to SF.

It’s not all bad: speculative fiction allows for powerful allegory, and can also make very interesting explorations/extrapolations of future attitudes/experiences of disability.

Jamer Hunt (Fast Company magazine): Our Bodies, Our Quantified Selves

The data generated by this micro-physics of the everyday has the potential to create unprecedented, massive databases available for projects from a dizzying array of fields. Imagine what researchers studying disease epidemiology might do with this information, or anthropologists exploring changing social patterns within the digital proletariat.

Courtney at From Austin to A&M: Cosplay, race, ability and gender; or, who gets to dress up as whom?

Doing cosplay as a femme!Doctor (or a black Doctor, or a visibly disabled Doctor, etc.) is part necessity (as in, I am in a lady-body, so if I want to cosplay as the Doctor, he would have to be a lady-body-Doctor, like a person in a wheelchair would have to be a wheelchair-user Doctor, or a black person would have to be a black Doctor). But it’s also a way for fans to see themselves in the Doctor, as the unquestioned protagonist of the show. Doctor Who fans can say all they like that DW is progressive enough in its way, but it’s still dated by its insistence that the main character be a white British man.

Lisa Sanders (NYT Magazine): Diagnosis — Pregnant and Pained

She didn’t have a fever, but the racking cough made her body ache all over. Her husband said it sounded as if she were coughing up a lung. Her OB said it was probably a virus. Whatever it was, it didn’t go away.

Switchin’ to Glide: “Independent Women”: Privileged Feminist Ideologies and Ableism

Independence or the pursuit thereof is a pursuit of privilege; the less that one has to depend on networks and relationships the more “successful” that person is. This is a profoundly ableist notion, in the sense that it constructs any sort of dependency as an obstacle to “success,” and because of the way our society is structured, people who are disabled are neccessarily dependent on various support systems.

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.