Category Archives: bad advice

Recommended Reading for 24 December, 2010

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?

The Broken of Britain: The GP’s Story by Dr Jest

So there you have it. Neither Pete nor Dud would have chosen to be where they are now, and neither has asked not to work when they were capable. Indeed both have rather struggled on when reason would have suggested they ought not. And I could name you a dozen others in a similar position. All present talk of making it more profitable to work than rely on benefit may sound very noble and high minded in the marbled halls of power, where hard graft means having a lot to read and a few late meetings to go to. It completely misses the enormous efforts made by the likes of Pete and Dud to keep going against the odds, and any move to impoverish them is little short of scandalous and should be relentlessly pointed out for the evil narrow minded bigotry it is.

Sarah at Cat in a Dog’s World: PWD and TSA

From information I’d heard from TSA administrators, I thought that the body scanners would reducethe need for physical pat-downs. Little did I know that TSA would use the new technology as an excuse to conduct more invasive pat-downs! It is obscene, especially when one considers that many people with disabilities don’t have any “choice” at all. If someone is unable to stand independently for ten seconds with their arms up, or if one wears any number of medical devices or prostheses…there is no “choice.” (And no, for many people, “don’t fly” is not a realistic choice.) There is, additionally, reason for concern about the radiation from the body scanners, particularly for cancer survivors and people who have a genetic predisposition to cancer. It is now pretty clear that body scanners, far from being a panacea, are making things worse. And people with disabilities are being affected disproportionately.

At Spilt Milk: Thanks for your help, doctor.

Make no mistake: I know that this only happened to me because I am fat. If I were a thin person and I walked through his door with the symptoms I described, he would have been forced to dig deeper. To ask me more questions, to hopefully come up with a wider range of options. Maybe run more tests.

United States: Megan Cottrell at ChicagoNow: Got a disability? You’ll see the difference in your paycheck

A lot of people might assume that if you have a disability, you might not make as much money as someone without a disability. But how much less? How hard is it for people with disabilities in Illinois to get by compared to their neighbors?

India: An unnamed special correspondent at The Hindu: Social barriers keep the disabled away from workforce:

Persons with disabilities are the last identity group to enter the workforce, not because their disability comes in the way of their functioning, but because of social and practical barriers that prevent them from joining work, a study on the ‘Employment Rights of Disabled Women in India’ carried out by the Society for Disability and Rehabilitation of the National Commission for Women (NCW) has said.

Guillermo Contreras at Chron.com: State sued over care for disabled Texans

The federal lawsuit, filed Monday in San Antonio, alleges the state isn’t providing some mentally and physically disabled Texans the opportunity to move into community-based settings, which advocates say are less restrictive and more rehabilitative than nursing homes.

Lastly, here’s a transcript of a story on Australia’s 7.30 Report program called Setting Sail:

Known as the ‘Everest of sailing’ the Sydney to Hobart race challenges the most seasoned of yachtsmen on what can be a treacherous ocean voyage.

Most of the focus is on the big maxi-yachts competing for line honours. But a unique crew of blind and deaf sailors is also commanding attention.

The charity organisation, Sailors With Disabilities, has been gifted a half-million dollar fast yacht, making them eligible for the first time in the prestigious Rolex Cup.

Send your links to recreading[@]disabledfeminists[.]com. Let us know if/how you want to be credited. And have yourself a fabulous weekend.

Dear Imprudence: Just Be an Adult Already!

Here’s some nostalgia for ya, gentle readers!

My dad, who was completely AB for the record, lived alone in the home I now own, and for a good portion of my life had many of his needs taken care of by members of his immediate family. My Grammy did most of his laundry, unless my aunt happened to be there doing laundry on Dad’s laundry day. My aunt, who was a book keeper for the family business, handled Dad’s bank account; she paid his bills for him back in the days prior to auto bill pay and signed most of his checks (most of my birthday cards suspiciously looked as if they may have been signed by her as well, to this day I can not tell their writing apart in some instances). It isn’t that my Dad couldn’t take care of himself or wasn’t an adult, but that they just simply did it for him after my parents divorced and he was living alone. Of course, Dad did things in return for Grammy, like grocery shopping and yard work after she wasn’t able to do it for herself…but that is another story for another day. Some people talk about ‘love languages’, and this is one spoken by this side of my family.

I don’t know that my aunt resented having that responsibility. I don’t know if any of Dad’s other siblings, all married with kids, resented this arrangement. I don’t really care, because it was something that was worked out between them, whether spoken or unspoken. There was, more than likely, a lot of traditional and gendered reasons why this arrangement took place. It also maybe had a bit to do with my grandmother being widowed, my Dad being her only child that was single and living alone, and who had the time to spend with her, taking her to Senior Breakfasts and stopping in for coffee in the morning after his night shift. It worked for them.

Perhaps this is why, when I read this letter sent to Emily Yoffe, AKA Dear Prudence, at Slate Magazine which was passed on to me by s.e. smith, I am inclined to find the myself rolling my eyes at the letter writer (emphasis mine):

Q. Reston, Va.: I have a 30-ish sibling with a health issue that has prevented him from working for the past four years. My parents support himhis own townhouse, car, new clothes, food, medicine, etc. They do everything for him (laundry, groceries, errands, etc.) Although his illness is real, he also spends a lot of time on his social life (out on the weekends, going to bars, etc.) and dates. In contrast, my wife and I (who live 10 minutes away) are trying very hard to stay afloat in this economy with small children, a house we paid for on our own, cars we paid for on our own, etc. We don’t receive much help (even babysitting). I can’t help but feel as though I am penalized for being functional, and I feel a great deal of animosity toward my family. Now, my parents are starting to ask me to help out my “poor” brother more, when my own family is already stretched incredibly thin for time/money. If it were up to me, I’d tell my brother to start acting like an adult and do more for himself. My parents would be horrified and upset. Any advice for getting through this tactfully?

Yes, yes. My brother has more than me! And he didn’t have to work for it! It’s not fair! (Sorry, I had a flashback to… well… my whole childhood.) I would love to be him, with all the damned free time and cool stuff and the devotion of my parents!

Too bad that the special perks come with strings. In my Dad’s case it was solitude and possibly depression, which I won’t pretend didn’t show in his demeanor. In the case of Reston, Va.’s brother, it comes with unspecified (thankfully he had the tact to leave this personal info out) medical conditions. We really don’t know the extent of them. We don’t know how much mobility this person has, how it impacts his daily life, if the reason he can’t work is due to pain, or what the disability is. This is mostly because it isn’t our damned business, but the point is that the grass isn’t always greener. Sometimes it is just sod.

Our good friend Reston, Va.’s brother isn’t being a Good Cripple, either. While his parents are doting on him for whatever their personal reasons are, he has the nerve to want to have a social life. He even goes to bars! We all know that bar ALWAYS means loud, rowdy club where every person is inebriated from imbibing in copious amounts of cereal malt beverages until wee hours of the morning, and never a quiet place where people can sit, talk, perhaps enjoy quiet music and a couple of cocktails or just a sandwich and the [insert sports team] game. There is quite a huge difference.

Reston, Va. wants to define the terms of what adult behavior is, and the hard truth is that “adult” doesn’t mean the same thing for every person. Having 2.3 children, a house, and a car while punching a time clock every day isn’t the universal litmus test. I read this letter as more of a cry that Mummy and Daddy aren’t babysitting more often so that he can go out once and a while or aren’t helping him with expenses than anything else.

Needless to say, I was not impressed with Prudie’s answer (again, emphasis mine):

A: If your brother is capable of hanging out at bars and going out on dates, I’m wondering why he’s not capable of doing his own laundry and getting his own groceries. It sounds as if despite his real problems, your parents are only exacerbating his dependency. They’re probably worried about when they’re no longer around and are trying to line you up to fill in for them.

You need to have a talk with your parents about the present and the future. Explain that despite his illness, it would be beneficial for the entire family if your brother took more responsibility for himself. You can say you love your brother, but you don’t have the financial or emotional resources to take care of him, and you in fact think more energy needs to go into helping him be a productive member of society. If they don’t want to hear your message, that’s their business. But you need to make sure they hear yours that you can’t take him on.

I am irritated to no end the way that Prudie here equates the ability to do laundry and grocery shop with being a “productive member of society”. Also, the way that it is obvious that one activity is the same as another, and that obviously if the brother is able to do one, since she can so capably glean from the letter exactly what the brother’s limitations are, he must be able to do all the others. Clearly, being disabled means that we must sit at home, in the dark, crying about how miserable we are if we are to ask anyone for any kind of help.

Prudie might be shocked to hear that PWDs are not all forcibly sterilized anymore (though it still happens) and that many of us manage to *gasp* have sex lives. Some of us manage to accidentally enjoy ourselves with full, meaningful social calendars.

But that doesn’t negate our need for accessibility, assistance, and actual empathy. Which she lacks. But based on the letter I see her, she won’t be lonely.

I fully support this letter writer setting boundaries for what he is willing to take on with regards to the care of his brother, especially since, honestly, it seems that he is more worried about what he is not getting that is equal to or greater than his brother’s benefits. I wouldn’t want to be cared for by someone who didn’t want to be part of my life or who would begrudge me having something that gave me moments of happiness. I don’t want people like that close to me. It is why people are afraid to have Facebook pages or interact publicly: the policing of what PWDs should be allowed to do is so rampant that they even lose benefits because they aren’t disabled enough in public. Boundaries are important on both sides, though, to protect everyone, and Reston, Va. is under no obligation to hurt himself or his family financially to care for his brother.

Yoffe was so off base in her response, though, that she was holding a puck when the first pitch went out.

Also worth noting is that has seemed to leave the brother out of this conversation altogether. Everyone seems to want to talk about him and his needs, how helping him will affect them, but I see no mention of talking to him about what he actually needs or wants. It is completely possible that Reston, Va.’s brother would prefer to get his own groceries or that he doesn’t need his socks folded, it is just that no one has bothered to ask.

Turned out that during all those years my Dad was able to balance a checkbook after all. He let my aunt do it because it made her feel like she was taking care of him because he was alone, since my Dad’s family is fairly close-knit. They did things like that for each other, not because the other couldn’t do them, but because they cared for each other, and that is how some people show it.

Dear Imprudence: May I Burden You?

Gentle Readers!

I love advice columns almost as much as s.e. smith, and I especially love ou’s deconstructions of them, so I get pretty stoked when ou passes them along for the rest of us to take a crack at them.

This one comes to the the New York Times’ Social Q’s from a mother who is getting a little bothered by the imposing looks of strangers when they take her daughter out in public:

Our 19-year-old daughter is disabled. She’s ambulatory, but walks with an unusual gait and is cognitively disabled. Wherever we go, people stare at her. Not glance, they stare. Recently we were out to dinner, and the woman at the next table couldn’t take her eyes off her. I wanted to say: “This is not dinner theater, and our daughter is not your entertainment.” But I didn’t. Most times, I just stare back and hope the gawker gets the message. Is there a better way?

Paulette Mann, Rye, N.Y.

I get extremely uncomfortable and irritated with people who can’t manage to be polite and respect the privacy of other people. “Othering” is a concept that riles me pretty good, and othering people based on circumstances beyond their control is right up there on my list of things that will get you “unfriended” or “unfollowed” in a keystroke. Beneath that is treating people with disabilities as if they do not have a right to privacy when they are in public with you. As if their existing in a manner that you find abnormal is somehow negating their right to eat lunch without you staring at them. Or asking them awkward questions about their condition. Or talking about them with your friends as if they aren’t right there.

I can only come close to imagining what Ms. Mann’s emotions must roll through when she wants to protect her daughter. How it must feel to want to shield her from all that uncomfortable awfulness. She is right to react the way she does, and to feel the way she does. Most of us with children want to do whatever is in our power to protect our children while we raise them to independence (or even in this case, possibly she doesn’t live at home and they are just enjoying some time out together). Here, Paulette is asking for advice on how to help with that deflection. People often turn to advice columns because it seems that they have exhausted other avenues. I applaud Paulette, actually, for taking this extra step, because I know how it feels to want to protect your child when it feels as if you can not.

I feel like the response that she received was anything but helpful to the situation that Paulette Mann drew out for us. Let’s have a look:

First off, let me apologize to you and your daughter on behalf of all the Lookie-Loo’s out there. That they don’t mean any harm is beside the point; you shouldn’t have to deal with them.

Well, Philip Galanes starts off OK. He sure got that right! *searches for cookie*

But now I’m going to impose another burden on you (as if your family weren’t shouldering enough of them). The next time you encounter a rude rubbernecker, like the wide-eyed woman in the restaurant, just smile and ask: “Would you like to meet our daughter?”

Yes. That sounds like it is exactly what she wants to do! Paulette Mann wrote to you, saying that she wants people to leave her daughter some privacy, and you want to have her now force her daughter to meet strangers! Here! Shake her hand! Come over to our table, invade her space and maybe you can ever startle her and frighten her by being a stranger! Without knowing more about this young woman, all I can say is that this is terrible advice to give to a mother who is asking for a police way to tell a stranger to piss off while her family is trying to enjoy a nice meal out. Without the Britney Spears following (a woman in another group of people I feel have invaded privacy).

Not to mention, let’s place more burden on a caregiver (because, if I don’t talk about the caregivers someone is going to run in here and call me insensitive). A parent needs another burden, amirite? As if we are not keenly aware of all the burdens we carry as parents. All we are expected to bear as we guide a child to independence. As a parent of a seemingly AB/NT child, I can not begin to understand what it is like to have that extra layer of responsibility raising a child with disabilities, but I can understand parenting from a disabled parent perspective. The pieces are different, but I am willing to bet the energies even out as they fit together similarly. “Impos[ing] another burden” is just what this mother needed, for sure. Smashing advice. Brilliant.

Oops. Was that sarcasm?

My hunch is when they shake her hand, they’ll begin to see her as a human being — with feelings and everything — and not some curiosity. Maybe then they’ll show you some of the respect (and privacy) you deserve.

It’s asking a lot, I know. But it may make a difference.

I don’t know that the best way to demand privacy is to invite others to invade it. I don’t know how that would affect her daughter. I don’t know how that would affect Paulette’s energy stores. I don’t know a how to do proofs on a Geometry test.

What I do know, is that, as a parent, this advice would have really felt hollow and a tad overwhelming. I don’t know that Galanes really had a handle on what he was suggesting. I can not imagine introducing a child to everyone who stares at her, and I can’t imagine that it would be a positive situation. Perhaps I am way off base, and I am willing to admit that if I am wrong. My own Kid would not enjoy that kind of invasion. Without knowing Mann’s daughter I couldn’t say for sure. But I am willing to wager that it isn’t a burden that Galanes had any right to place on her at all.

A special thanks to bzzzzgrrrl for the link to this letter!

The Inner Critic

[Warning for possibly triggering content regarding mental health, specifically depression.]

I’ve been reading a fair number of how-to creativity books (yeah, I know, creativity is not something you can “learn” from a book) recently in preparation for a long-term project, and one thing I have noticed about some of these books–and a lot of the “advice” floating around out there about creativity–is the notion of the “inner critic.” The inner critic, according to some Professional Creative Types, is the voice that tells you that you are not creative, that you can’t write, or draw, or paint, or accomplish whatever creative project you want to. The inner critic is supposed to stand in for everyone who’s told you that you are a crappy artist, that your creative pursuits aren’t good enough, and all of that fun stuff that apparently wasn’t there when you were a kid. And, in the course of becoming truly creative, you are supposed to silence your inner critic.

This got me thinking, however: What if that critic was there when you were a kid? What if the inner critic is, well, part of you, and you cannot “just silence” that part?

One thing that I really don’t talk about publicly (on the internet or off) is my history of major depression. There are many reasons as to why, and I think that those might best be saved for another post. However, there is something that really bugs me about the “inner critic” model of creativity: it does not take depression, anxiety, or other mental health conditions into account. What if that voice in your head has been there for a while, and is an active part of your mental health issue? It’s not so easy to turn off that voice that tells you that you suck, or that your art or writing is a bunch of crap, or that you will never amount to anything when that voice is there because of a mental health condition.

There’s another assumption in writings about the importance of “turning off” the inner critic, which is that all children have a magical reserve of resilience and that is why they are so creative. These children simply don’t care what anyone else thinks, and the Creative Adult must recapture that sense of adventure by silencing the inner critic! It sounds so easy! But what of the depressed child, or the child with mental health issues? As someone who had depression issues as a kid — and still does — I question the supposedly “universal” applicability of this whole inner critic business, the assumption that it can be turned off like a damn light switch, after which we will all Recover Our Childlike Capacity For Creativity, or something.

I remember having my own Inner Critic as a kid, and it was not fun. Certainly, I did have years where I had that sense of Childlike Creativity and Wonder, but those were also interlaced by a voice in the back of my mind that would tell me awful things. And it never left, after a while. It would hiss: You do not belong. You are weak. Your bum leg is punishment for something, and you sure as hell aren’t going to “make up for it” with your stupid cartoons, give me a break! You think you’re going to be popular because of your cartoons? Because of your writing? Please. You are worthless, and also none of the other kids like you. Your art is just a hobby, nothing more.

Then, once the depression came on the scene, those little hissings became, well, much bigger. They’d been there when I was a kid, no doubt, but with major depression, they stuck in my brain like a particularly awful tape loop that just couldn’t be turned off. Things with my depression are much better now — as they have been for a few years — but I am always, always on the alert in case it comes back full-force. My depression not totally gone (nor do I expect it to be), but I manage it with care. And the “inner critic” that artsy self-help types slam? She’s still there, and I think she will be there permanently. The trick, for me, is learning to live with her instead of assuming that silencing her is an easy step.

Injuries to mobility-impaired kids: researchers suggest “consider avoiding stairs”

MSNBC is carrying a Reuters article, Insult to injury: More kids hurt by own crutches, about injuries to young people “related to the use of crutches, wheelchairs and walkers”. Apparently, these injuries are “on the rise”, with significant numbers of USAn emergency room attendances related to injuries sustained while using a mobility aid.

Note, firstly, that there is no formal E.R. category nor any panic about injuries related to the use of legs, despite this being a rather large category of actual injuries.

Note, secondly, that journalists reporting on this study make no attempt to interrogate the root cause of the injuries, preferring to attributing the injuries to the use of the device itself, despite this:

[…] three out of four times, the injury was caused by tipping of the device or falling as the result of coming upon some sort of obstacle such as stairs, a curb, a ramp, rough ground, or icy, wet conditions.

Why are these injuries being attributed to use of the mobility aid, instead of to poor, inaccessible design? Why are kids falling trying to navigate stairs when there should be ramps and elevators available? Why are kids falling on curbs when there should be curb cuts? Were these injuries on rough ground and ice preventable by salting, pathways, cover? 70% of the injuries occurred while children were using wheelchairs. How many were occasioned while these children were trying to negotiate inaccessible environments?

We have no idea. Because no-one, apparently, has bothered to ask. Nor has any mention of inaccessibility been considered worth reporting or putting in the press release.

Instead, we get headlines like “Crutches, wheelchairs can cause injuries” and “Injuries can be caused by crutches, wheelchairs“.

The authors of the Pediatrics study themselves chose to title their journal article “Pediatric Mobility Aid–Related Injuries Treated in US Emergency Departments From 1991 to 2008“[1], and there is no mention of universal design or accessibility in their abstract.

In contrast, there are plenty of comments throughout the study of the issue of the supposed “misuse” of mobility aids, despite this accounting for only seven percent of injuries.

There is a mention of accessibility in the full-text article, buried deep in the discussion, but this never made it to anything that will be read by the general population, or indeed most of the medical profession. Furthermore, the mention of accessibility only talks about in-home modification – completely failing to address the number of injuries that occurred on curbs, rough ground, and icy conditions.

This is what the authors had to say about accessibility:

Curbs, stairs, rough terrain, and steep inclines and declines were common trigger factors for falls and other injuries, leading us to speculate that lack of accessibility, particularly in the home, may be 1 factor contributing to mobility aid–related injury. For children who were using mobility aids on a temporary basis, particularly crutches, home modification and avoiding stairs may not have been considered.

“Avoiding stairs”.

Mobility-impaired children should consider “avoiding stairs”! This is not just ignoring accessibility; it’s a giant slap in the face. Do the authors seriously think that it hasn’t occurred to anyone with a mobility impairment to try to avoid stairs? Really? We’d love to. That would be fabulous, thanks. However, we have lives. Lives in inaccessible environments, where we sometimes are left with the choice to take stairs or not go. To school and university, to work, to doctor’s appointments, to public transport, to artistic and political events, to social gatherings. Mobility-impaired people don’t take stairs and curbs out of choice; we do it because there’s no accessible alternative provided. And what happens to PWD who can’t take stairs no matter what? Confinement. Yes, PWD aren’t “confined” by wheelchairs; PWD are confined by discrimination, thoughtlessness, and inaccessibility.

Instead of using their platform to publicise an unequivocal call for safer public design, the authors choose to focus in their abstract and press release about how they think “additional research” is needed. The need for further research is, indeed, their ONLY conclusion! But if this research focuses on device malfunctions and children’s competence, “misuse” of mobility aids and custom in-home modifications, it is destined to fail.

If there is to be additional research, a broad, societal view must not be so studiously ignored. However, do we really need more and more and more research to tell us that kids with mobility aids have trouble negotiating stairs, have trouble getting up curbs, have trouble on icy ground? More research to tell us, five or ten or twenty years of inaction down the track, that PWD of all ages are endangered by inaccessible environments?

Without recognition of the systemic causes of a problem, there can be no successful systemic solutions. How much “additional research” is needed before there is action? How many inquiries? How many reports? How many white papers? We need to stop looking at the trees, and look at the forest.

The solution is to inaccessibility is accessibility. The first-tier principles of mobility accessibility are straightforward and long-established. Get on with it.

[Hat tip to Andrea of the Manor of Mixed Blessings]

[1] Pediatric Mobility Aid?Related Injuries Treated in US Emergency Departments From 1991 to 2008
Alison M. Barnard, Nicolas G. Nelson, Huiyun Xiang and Lara B. McKenzie
Pediatrics published online May 24, 2010;
DOI: 10.1542/peds.2009-3286

Science Says ‘Go Outside and You’ll Feel Better!’

I recently came across a Reuters story on a University of Essex study discussing the impact of spending time outside on mental health. ‘Five minutes in the green can boost self esteem,’ the title says. Now, this is actually a study supported by my own anecdata: When I go outside, I do indeed experience a mood improvement, and I know a lot of other folks who feel the same way. So this post isn’t about picking this study apart.

It’s about looking at the framing of the study, because that’s what I think is interesting.

What the study showed is that spending five minutes in a green area, especially if it has water, can have mental health benefits for people, although young folks and people with mental illness experienced the most significant changes. And the way I’m seeing the study reported, the burden is being placed solely on the individual. You need to go outside. You need to spend more time in green spaces. You need to make improvements in your mental health. It only takes five minutes! Get with the program! (P.S. It would be nice if you exercised while you were at it because otherwise you might get fat.)

Hmmm.

Are there maybe some obstacles to spending time in green spaces? Let’s explore some of them, shall we?

What about accessibility? Let’s assume you’re a wheelchair user living in an urban area. Can you access a park via public transit? If you get to a park, are the paths navigable? Are you a scooter user? Is it possible for you to get to a park on your own, or do you need a buddy to manhandle your scooter onto a bus for you since a lot of buses are poorly equipped for scooters? Do you use a service animal? Are you going to get hassled on your way to/while in the park?

What about time? If you have odd working hours or you’re caring for children or you’re relying on public transit in a city with poor transit? How are you going to make the time to get outside if the nearest park is a 30 minute trip?

What if you have multiple chemical sensitivity and a park is using pesticides?

What if you have social anxiety disorder that makes it difficult to leave your home?

What if a park is in an unsafe area?

What if…?

The framing of this study kind of exemplifies the medical model of disability; it’s all about things you, the individual, need to do. You are disabled by yourself, not by the world around you. Here in the US, there’s an especially strong emphasis on personal responsibility that I see coming up in disability narratives a lot. It’s that emphasis that says we should cut funding to social programs for people with disabilities because, well, they should take responsibility for themselves! It’s that emphasis that says that accommodations are too much of an obstacle for businesses because, well, people with disabilities should be able to sort it out on their own! The burden is on the individual to figure it out.

What I highlighted when I discussed some of the obstacles to ‘just’ getting into a park for five minutes is the social model. These are failings of society, not you as a person. Being told to ‘just’ go to the park for five minutes a day isn’t enough. You may already be a fan of trees and green spaces and be unable to get to the park because society has decided to make that difficult for you. What we should be concluding from this study is not ‘hey, people should go to the park more!’ but ‘hey, we should make it possible for people who want to go to the park to do that! That would be awesome!’

And what the reports I’ve seen on this study remind me of, over and over, is that we live in a society where disability is deemed to be your fault and your responsibility. Accommodation is not viewed as a social responsibility, full inclusion of people with disabilities is not regarded as a priority, and making spaces welcoming and friendly to as many human beings as possible simply isn’t important. What is important appears to be looking for yet another way to remind people that their disabilities are their own responsibility and that if they just did more maybe they wouldn’t be so disabled.

If you’re the park-going type, what obstacles do you experience in your community when it comes to accessing parks and other green spaces?

All Those Healthy Eating “Rules” are Just Guesses, Really

File this under “Who Even Knows, Anymore?”

s.e. smith recently posted a photo of a “5 a day” tag that came on some asparagus she bought. She felt, and I agree, that those tags are a form of food policing – instructing people what they “should” eat. The corollary, of course, is that if people do not follow these food guidelines, their unhealthiness is their own fault.  s.e. explored some of the problems with these educational campaigns over at This Ain’t Living, but I want to highlight another problem here.

That problem being, namely, that NOBODY KNOWS WHAT THEY ARE TALKING ABOUT. From a recent article at Scientific American:

The recommendation that people eat at least five servings (about 400 grams) of fruits and veggies each day, espoused by the WHO since 1990, was based on studies that found a link between higher intakes of these foods and lower risks for cancer and other diseases.

Since the 1990s, however, evidence from large studies has been mounting that the protective effects of these foods against cancer in particular might be modest—if it exists at all.

The results are in line with other findings both in the U.S. and abroad that suggest the protective effect of fruits and vegetables is “much smaller than had been believed 10 years ago,” Harvard School of Public Health’s Walter Willett, who wrote an editorial accompanying the study, noted in an e-mail to ScientificAmerican.com. People who eat more fresh fruits and vegetables are also more likely to make other healthful lifestyle choices, such as exercising more and drinking and smoking less, which the researchers noted “may have contributed to a lower cancer risk” overall.

So this “5 a day” rule – which has been adopted as healthy eating dogma all over the world – may not actually be based on much of anything and there’s virtually no evidence to support the assertion that eating more fruits and veggies will automatically lead to better health.

But watch – it will still be used to shame people, and to blame them for their own health problems, regardless of the lack of scientific support. This strongly supports the argument that these healthy eating rules, and other rules about what people “should” do to be healthy, are much less about scientifically proven relationships between eating and health and much more about shaming people for their health problems.

(h/t The Awl for the link, and the suggestion that You Are Going To Get Cancer Anyway, So Have The Steak)

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.

Dear Imprudence: A “Tired Wife” Strikes Back?

The hits just keep on comin’, thanks to Slate. Earlier this month in Dear Prudence, we got to read this winner:

Dear Prudence:
My husband had a stroke 18 months ago. At first he was unable to speak and his right side was paralyzed. He regained his speech and, with a lot of work, got full use of his arm and leg. But the stroke made it impossible for him to practice his profession, and he continues to have short-term memory problems. He’s home on extended leave. My problem is that he is obsessed with what he has lost and how bad things are. When I come home from work—I have to keep us fed and housed—all I hear about is what a terrible state he’s in. I’ve tried various things: We’ve gone to a counselor, his doctor has given him anti-depressants, I’ve encouraged him to go back to his hobbies. I try to plan things that will be enjoyable for him. Nothing is working. He won’t take up his hobbies or socialize, and he dwells so completely on the negative that even his closest friends are getting weary. It seems to me that he should be grateful he survived and regained so much. I am so exhausted by his negativity that sometimes I just wish I could leave him, but I would never do that. Is this the way it’s going to be forever? –Tired Wife

First, something tangential: Is this not THE perfect mishmash of weird disability-related hangups from an abled person plus some lovely Feminine Mystique-era gender(ed) expectations? It’s like it was made for a takedown on this site.

Moving on: On one hand, I can certainly see why this woman is frustrated. Adjusting to newly-acquired disability can be an extremely difficult process — not only for the person with the disability, but for their relatives and loved ones as well. However, there are a ton of stereotypes made explicit in this woman’s letter, not least of which is the “he’s just so NEGATIVE!” and the related expectation that her actions and her efforts will somehow make him become a happy, compliant Good Cripple. I have to wonder, has she stopped to consider that adjustment to disability is a long process? Or that having to go on leave from one’s job due to a newly acquired disability might, in fact, be extremely taxing on one’s self-image? Apparently not — all that matters is that he show proper gratitude (and non-“negativity”!) for all of her efforts, and not trouble her with his “dwell[ing] completely on the negative.” I am sure that many of us would find it hard to be “grateful,” too, if we had someone treating us this way due to our disability (or disabilities). Once again, a disabled person’s feelings and experiences are steamrolled over in favor of those of a person who is not disabled, and this is apparently acceptable because they are in a relationship.

The gender question, too, is worth a look; while it’s pretty common knowledge that women, on average, do much more “caretaking” work inside the home than men (at least in the U.S.), there are a few things that stick out, mostly based on what the letter writer does not mention. Was she primarily responsible for managing her husband’s schedule and social life before his stroke? If “nothing is working,” has she spoken with him about it? Please understand that I am not trying to blame her for larger sexist patterns of who tends to do the home-related care-taking and who does not; it does, however, seem odd that she has not (as far as we know) attempted to speak with her husband about this — his “negativity” nonwithstanding.

The sense that I get from this letter, overall, is that this woman has spent a huge amount of time and energy trying to fulfill the role of the “perfect” wife, and now that her husband cannot fulfill the complimentary “perfect husband”/breadwinner role, her resentment is close to bubbling over. Add to this much of mainstream white, abled feminism’s emphasis on “independence” — which seems to exist in a magical land where no one is (or should be) dependent on anyone else — it is not terribly surprising that she feels that her only option would be to leave her “negative,” disabled partner. That these seemingly opposing tendencies could show up in one letter is not surprising, either.

So, what do you think, commenters?

What Is ‘splainin’? And Why Should I Care?

‘splainin'[1. See also: ‘splaining, ‘splain, ‘splainer, etc.], a contraction of “explaining,” is a term which has been popping up a lot in the social justice sphere lately, including on this very website, and I think it’s worth exploring a bit. In the first place, not everyone might be clear on what is meant when people refer to ‘splainin’, and in the second, there’s a phenomenon around it which is critically important.

In a nutshell, ‘splainin’ is an “explanation” which is put forward in the most patronizing way possible. The ‘splainer feels passionately that ou opinion and beliefs outweigh actual lived experience and wishes to inform everyone of this fact. ‘splainers are unfortunately especially common in safe spaces in which the voices of people living in marginalized bodies are centered, because such spaces are threatening to people who find our voices contrary to their worldviews.

‘splainers feel the need to put their oar in on conversations where they may not specifically be welcome or even wanted, often with an air of entitlement. They approach the conversation from the position that people must be ignorant if they think/experience differently than the ‘splainer does, and that a few rounds in comments will sort them out and bring them over to the side of right. One of the many reasons that this can be harmful is that often people are just starting to come to the place where they feel comfortable asserting their lived experience, because they’ve been taken in by arguments like those presented by the ‘splainer for their whole lives, and seeing those arguments again can set off a spiral of self doubt, confusion, and self loathing.

Writing at Shapely Prose about mansplainers, fillyjonk said:

Here’s a thing about mansplaining and why I care a lot about it: it is annoying, and frustrating, and insulting, and deeply rooted in institutionalized sexism, and often profoundly harmful to women. We talk about all of that. What we don’t always talk about is how easily it shades into gaslighting: your reality is false, my reality is true.The biggest mansplainer I’ve known made me doubt my sanity for years; I am still recovering. This isn’t just a supremely sexist and problematic internet habit. It can be a psychologically violent act.

There are a few key components of ‘splainin’. The first is that the ‘splainer usually does not share the experience of the person being ‘splained to, or is in a place of denial about shared experience. For example, a white person informing a person of colour that ou doesn’t understand ou own lived experience (melaninsplainin’), an able person telling a person with disabilities to “lighten up, it’s just humour” (ablesplainin’), and a man informing a woman that her concerns about reproductive rights are baseless (mansplainin‘). Occasionally, professional credentials may be dragged out. “I’m a police officer, and no police officer would ever harass someone for being while Black!” “I’m a doctor, and there’s no way that kind of behaviour is acceptable, you must be leaving something out of the story!” “I work for a women’s rights publication, so I am very well informed about women’s rights issues!”

The second is the fact that the ‘splainer not only passionately believes that someone’s lived experiences are wrong, but that they need to be corrected, that there are right and wrong answers when it comes to someone’s life. This often involves an active erasure and denial: “I’m being discriminated against.” “No you’re not!”

Another troubling component of ‘splainin’ is that it’s viewed as acceptable to override expressed wishes of people involved in the conversation “just to make this one point.” Since the people in the conversation are very accustomed to dynamics in which they are told that their voices do not matter and should be silenced, and they may view the space they are in as one of the few places where they are not being oppressed, this attitude can generate a great deal of hostility. This is compounded when the ‘splainer becomes defensive after encountering pushback, and it feeds a very vicious cycle.

There’s an “outsider knows best” aspect to ‘splainin’ which is extremely troubling, especially when it is used in social justice communities to attempt to shut down voices. When people go to an effort to center voices which are often silenced, to empower people to speak up about their lived experience, to create insider conversations about their own communities, and outsiders come in to ‘splain, it can be very damaging. ‘splainers are often very upset by the suggestion that some conversations are not about them, and that some conversations need to occur from a place of shared experience, and, while open to members of the public who wish to view, are not open to everyone who wishes to speak. This upset can sometimes manifest in very ugly ways.

“My belief,” the ‘splainer says, “outweighs your experience. What I think matters more than the information you are presenting me with about what is actually lived.”

As for why you should care about ‘splainin’, well, I hope it’s evident after reading this. (And I want to note that this post is not a commentary on anything going on here, it’s just a definition and exploration of a term we use a lot so that everyone can be on the same page. Nor is it a gibe aimed at particular people or sites; it’s really just a discussion of a general issue.)