Category Archives: feminism

Imperfections

I am one of those people who often cannot ask for help.

At times, I am so afraid of seeming weak, or whiny, or overly-sensitive, or dependent on other people that I tend to either ignore my own needs until I start flailing around at the last minute in order to not get overwhelmed, or minimize the possibility that some things could be going wrong. I am one of those people who needs to outwardly look like I know what I’m doing and that I have things totally under control — preferably at all times. (Intellectually, I know that this expectation is intensely unrealistic, and can be dangerous; even the most “put-together”-seeming person can be a total wreck in private.)

Part of this is a defense mechanism that I developed around the same time that I started getting made fun of in grade school for my mild cerebral palsy and the limp it caused. Somehow, I figured that if I could be perfect at something — my something being academics — and make it look effortless, other kids would stop making fun of me. This didn’t work out quite the way that I planned; regardless, I still tend to hold onto remnants of this habit.

Part of it is also my own internalization of the cultural ideals that tell people with disabilities that we must always “compensate” for the imperfect status(es) of our bodies or minds, a la the Good Cripple or Supercrip, as well as the cultural messages that tell many women that they must be “perfect” while making it look downright easy, in accordance with the current “ideal” feminine role. A great number of women are told, in ways subtle and not, that we must try to “have it all,” and do it without a drop of sweat showing. We must look good all of the time, we must wear clothes that are “flattering”, we must keep a figure that approximates whatever sort of beauty standards happen to be “in.” We must take care of others’ needs and feelings and make this our number one priority, and think about ourselves last (if at all). We must project an outward appearance of cheeriness, strength, or deference, no matter how we might actually feel. If we cannot do most or all of these things, we have failed. And when this loaded set of expectations intersects with the PWD-compensating-for-disability trope, look the hell out.

These are just a few examples, of course, and these expectations shift in various ways depending upon race, class, ability status, sexuality, gender identification, education, and a host of other factors that are often derided as being remnants of “identity politics.” Identity and its politics, however, still continue to matter.

Here’s where I am going with all of this: For the past few weeks, I have been dealing with newer and more unpleasant fibro symptoms that are starting to affect my day-to-day life. At first, I thought these symptoms were just the result of a bad day, and then a bad week, bad month, et cetera (you can probably guess as to where this leads). I wanted to believe that these symptoms were not a huge deal, and look like I knew how to deal with them until I made it back to “normal,” however tenuous that position is for me. Now that these new and interesting symptoms have become a bigger deal than I had anticipated, a lightbulb has also gone off in my head: I need to work on letting go of this all-or-nothing, but-I-should-always-have-it-together-even-when-I-don’t-and-do-not-need-help mindset.

Today, I finally made the decision to schedule a doctor’s appointment to get help with my new symptoms.

Acknowledging that I don’t have some things completely “together” and that I (gasp) need medical help with these symptoms may be a tiny first step toward changing the tape loop in my brain that tells me that I am on one side of a binary — that I am either a or b, all or nothing, need help with everything or do not ever. There is a middle ground. Until now, I haven’t been able to acknowledge that.

We also have the right to be in public

This is a guest post from Thetroubleis, a knitting, writing, dog training, queer uppity negress who enjoys writing about race, madness, disability, adoption and the intersections of the aforementioned subjects. She is a big geek who spends good deal of time raging against fandom and canon underrepresented of marginalized people and squeeing about new episodes. You can find her writing at The Trouble Is…

I’m disabled. I do weird things that bother other people. I have trouble controlling the volume of my voice and I use a service dog. I’m easily distracted and have a tendency to become very intensely focused on one thing. I hate certain buildings and noises, they make me want to crawl out of my skin or scream until it stops. I can’t tell you why they’re wrong, but I simply know they are. Sometimes, fear sinks its claws into me and doesn’t let go until its had its merry way.

These things bother abled people quite a bit. Ever since childhood, I’ve been judged for not preforming humanity correctly, as anyone who wants the basic decency afforded a real person should. Reading at the dinning table to avoid a freakout is disrespectful. Refusing to look people in the eye must mean I’m hiding something. Making my mom order for me because I couldn’t stand to talk to strangers was freaky and just not right. It cannot be allowed stand and thus, I had to be molded, to become more normal. The discomfort of others with my natural state was always more important than anything I could need.

I preform better now. Most people can’t tell I’m not neurotypical anymore, unless I’m having a panic attack or am in the arms of mania. I haven’t had a screaming fit in public in years and I walk up stairs normally now. Yet, I’m still off. Even the things I do to cope, so I won’t behave in a manner that will end with me being locked back up, are judged far too often.

This is ableism.

Knitting through stressful situations, or to keep focused, seems to really bother abled people and non-knitters. Out of courtesy to other people with attention problems, I even try to use quiet needles and keep my knitting under a desk if I’m sitting at one. Yet, every time I’ve been scolded for not paying attention, I’m simply told I’m being distracting, without any understanding that I’d be willing to work around other people’s needs. Often I’m pretty sure I’m not being scolded for being distracting, but for the possibility of it. Because what I need to do to get by is weird, so of course it’s my fault when people gawk.

I have a service dog, in training. His name is Figaro and he’s the best thing that has ever happened to me. The general public is not so sold on him. Every time we go out, snarky comments start up and I live in area that’s pretty service dog friendly, thanks to the efforts of our program and other handlers. This behavior isn’t even coming from gatekeepers, but from people who seem generally angry if they see Figaro. Admittedly, he’s not perfect, but his worst behavior is slipping out of a heel or popping up from a down. The act of him simply lying under a table while I eat seems to be an affront to the proper way of doing things.

These are just stories from my life. Other people with disabilities deal with other situations, some much, much worse than mine. Policing of behavior is a chronic thing for many PWDs, regardless of the actual effect of their behavior of other people. The abled community has its standards to uphold and some girl having her dog lay on her to calm her down is too weird to let stand. People end up locked up because of these standards. People end up dead. We end up cut off from any real support any coping methods we may have had, all in guise of conformity.

One would think feminists, who I hear aren’t too keen on the policing of womens’ behavior, would see the parallels in policing the behavior of other marginalized people. Really, truth be told, the feminist movement has never been very good at being inclusive, at understanding intersecting oppressions. Therefore, I’m not very surprised, just further disappointed. This happens time and time again in various movements sold as progressive.

All people, have the right to public spaces, even people who annoy you. Sometimes, because of conflicting access needs, compromises need to be made, but shunning people who don’t preform correctly isn’t compromise. It’s just more of the same bigotry. We no longer have ugly laws but people still attempt to enforce the spirit of them. Ableism isn’t feminism, so if you’re abled, actually listening to PWDs? It’s a capital idea.

Pap smears, fat-shaming, and the lithotomy trap

[X-posted at Hoyden About Town]

So I’m sitting watching the evening news, and on comes a chap telling us women and girls that we oughtta go and get more Pap smears. Then on comes a woman to talk about how Pap screening rates are going down in young women, and to speculate about possible causes for this. The cervical cancer vaccine comes up, as does the “awkwardness” of the test, and our inappropriate embarrassment, which we apparently need to get over.

What I don’t hear addressed in the mainstream media in these discussions of Pap screening? Well, lots of things, like heterosexism, and ignorance about Pap age/sexual experience guidelines, and sexual assault (inside and outside the medical system). However, the one that really stood out in my mind today is also a factor that isn’t going to be fixed by lecturing women. Fatphobic abuse in the medical system.

There has been a fair bit of talk around the feminist traps about some of the other factors, especially the aftermath of sexual assault and its effects on medical interactions. I’m not going to go into that in this post, but it’s a huge, huge issue. What I would like to talk about for a moment, not because it’s more important but just because I have a first-person anecdote, is medical fatphobia.

We know fatphobia kills. In all sorts of ways, in all sorts of settings. And one way in which it can kill is the horrendous tendency of doctors – quite a few doctors, from the stories I hear around the place – to trap women and girls on their backs so that they can shame them while they’re vulnerable. And what they don’t realise, or don’t care about, is just how long-lasting the effects of this can be – and not in a good way.

Medical education materials abound with motherhood statements about ‘Preventive Medicine’ and ‘Lifestyle Intervention’ and ‘Opportunistic Behavioural Education’. General practitioners are exhorted, over and over again, to take any and all opportunities they can to tell people they’re fat. Really, over and over. And OVER. And doctors, labouring under the mistaken impression that this will cause said people to magically become skinny and therefore ‘healthy’, go ahead and do it, then smugly boast about it between themselves, sighing about how no-one ever listens to them. Or, perhaps, under the impression that they can then self-satisfiedly sit back and tick a box on the chart about how they’ve engaged in initial Lifestyle Education, which they learned all about at the last Lap-Band seminar.

Medical education is a powerful, powerful matrix of fat hate, based on the twin premises that telling people they’re fat is (a) helpful and (b) harmless.

So let’s talk about how that plays out in practice:

When I was 19, I had a Pap smear. It was my first. I went to the nearest available doctor, who worked in a setting where they dealt with a late of people in late adolescence and early adulthood. I wasn’t particularly concerned about it; a very little vague unease at the unknown, but no particular trepidation. I didn’t bother taking anyone with me, and I just booked the appointment in between other things I had to do, like med school classes and whatnot. And off I went.

I got my Pill script, had my BP taken, then assumed the position. And the doctor came up into his position, as they do, then stopped.

He looked at my thigh. “Not quite the right spot,” I thought, “but hey, he probably knows what I’m doing more than I do.”

Then he touched my thigh. Around the middle, underneath (in lithotomy position).

Then he JIGGLED IT.

He jiggled my thigh.

And then he grimaced.

And then he did the Pap smear. I was frozen, completely unable (by my inexperience, position, and by general medical disempowerment) to say anything.

And then I fled.

Was I ‘traumatised’? I didn’t have nightmares. I went and got my next Pap smear dutifully, largely because I really didn’t have any choice – no Pap smear, no Pill script. (Ask me about contraceptive hostage-taking! You know you want to!)

But every time I get a Pap smear, every single time, even now more than twenty years later, I see his face. I see him jiggling my thigh with that look of disgust. Every time I lie down and spread my legs for the speculum, I am reminded of exactly how repugnant my body is.

My first impulse is to tell you exactly how fat I wasn’t, back then. To tell you that it wasn’t ok for him to do that because I was physically fit at the time. To tell you at length about how my aerobic capacity was at the 95th centile, that I could do a hundred pushups, that I could swim a k without stopping, that I was beating my fit male friends at squash, that I was getting State medals in my chosen sport. But that’s all irrelevant – because fat-shaming isn’t ok for people who are actually fat any more than it’s ok for people who aren’t. Fat-shaming doesn’t get a pass when it’s limited to people as fat as I am now, or twice as fat as me, or whatever. Fat-shaming isn’t bad because it’s directed at inbetweenies as well as at fat people. Fat-shaming is harmful for EVERYONE. Fat-shaming is not.ok.

As long as some doctors keep seeing lithotomy position as a prime opportunity to ladle on the shame, girls and women are going to avoid Pap smears. So hey, ball’s in your court, medical profession. Fix it. Get your own house in order, and meanwhile, stop telling US we’re the ones doing it wrong.

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.

Quoted: Audre Lorde

The supposition that one [group] needs the other’s acquiescence in order to exist prevents both from moving together as self-defined persons toward a common goal. This kind of action is a prevalent error among oppressed peoples. It is based upon the false notion that there is only a limited and particular amount of freedom that must be divided up between us, with the largest and juiciest pieces of liberty going as spoils to the victor or the stronger. So instead of joining together to fight for more, we quarrel between ourselves for a larger slice of the one pie.

— “Scratching the Surface: Some Notes on Barriers to Women and Loving” (1978), in Sister Outsider: Essays and Speeches (The Crossing Press, 1984)

It’s Always More Complicated: The “Justified” Abortion

[Trigger warning for “disabled child = burden” narrative.]

Last night I was reading several pro-choice tumblrs, one of which had linked to “The Choice“.

What makes us human? When is a life worth living? Worth ending? How much suffering is bearable? Is avoiding suffering brave or is it cowardice? When is abortion justified?

Should Fred be born, my wife would never return to work. My daughters would always come second. Some basic research online and asking friends in health roles showed a high chance of divorce before my son was a teenager, the stress of care literally tearing our family apart. Every news article we read showed little or no government support, with charities closing their doors. The doctors were encouraging about support; the real life carers we spoke to, not so much.

I’d never support killing a born child on any grounds. Yet here I was, suggesting death for a child almost born. I may not be a good man, but I’m a husband and a father. Had we not known, I’d be living with Fred’s condition today; but we take the tests so we can act on the information received.

So, let a bad man say the words that will condemn me: Fred’s life would have been less than human. It would have been filled with love, yes, but mostly loneliness, confusion, pain and frustration. The risk to my marriage and the welfare of my daughters was too much. I chose to minimise suffering. For my wife, for my daughters, for myself and most of all for Fred, I chose abortion. It was a choice of love.

I have complex reactions to this that are not really easy to talk about, but the one thing I do want to make clear:

Abortions do not need to be justified.

I know there are strong political and advocacy reasons why stories like these – the so-called “justified” abortion – are told whenever people talk about abortion and the law. They are “good” abortion stories, with the happy family, the desperately wanted child, the “horrors” for everyone had the abortion not been performed.

I struggle with these sorts of stories because I don’t know a way to talk about them. I want to talk about the way that disability is discussed in them – always, always, as horrible, as tearing families apart. And yet, these are people’s lives. I don’t think in any way they made a “wrong” or “bad” choice, or a “brave” one, either. They made the “right” choice, in that it was the “right” choice for their family, and I fear that talking about the language used is abusive. You’ve shared your painful story, your very personal story, and I want to now talk about disability and how it’s used to score points in the so-called abortion debate.

And yet, I desperately do.

I deeply resent the way anti-choice advocates point at people with disabilities and talk about how they’ll all be eliminated if we allow abortion-on-demand. The sheer amount of hate directed at Don when he goes to pro-choice rallies by the anti-choice contingent, because they see him as a traitor to their cause, is amazing to me.[1. Of course, they direct more at any pregnant pro-choice women – there’s a video clip from Toronto last year with someone telling a pregnant woman “I hope your child kills you”.]

I don’t see these same people at protests and demonstrations about making Halifax an accessible city. I don’t see them at demonstrations about improving health care options. I don’t see them doing anything for people with disabilities except using them as pawns, and I loathe them for it.

And yet, many pro-choice advocates also use people with disabilities as pawns in these so-called debates. They hold up stories of fetal abnormalities as “justified abortion”, as the acceptable test-case, the one they know the general public is likely to agree with. I see no analysis, no discussion, of the ableist nature of this narrative. It’s an acceptable justified abortion because the fetus was abnormal, and who wants a broken child that’s going to ruin everyone’s life?

All abortions are justified.

It troubles me so much that it’s only the “abnormal” fetuses that are okay to use as abortion stories.

[Originally published on my tumblr]

[Note: Things we are not going to do in this thread: Debate whether or not abortion is “okay”. Publish shaming comments towards women who have abortions. Talk about people with disabilities as burdens. Discuss individual actions as though they occur in a complete vacuum and are not influenced by societal attitudes and pressures.]

An Open Letter to Ms Magazine Blog

Dear Ms Magazine Blog:

My name is Anna. I’m what some people in North America would call a person with a disability, and some people in the UK would call a disabled person. My husband, many of my friends, all of my co-bloggers, and a large number of our commenters are also people with disabilities/disabled people.

Your blogger, Carol King, would instead refer to us as “the disabled”, and as pawns of the religious right. In her blog post Kevorkian and the Right to Choose , she wrote:

The “right-to-lifers” enlisted the disabled in their cause when they cautioned that allowing people to choose to die would soon become their “duty to die.”

I’m pretty angry about that. Not offended, Ms Magazine, angry. You see, I’m really tired of “the disabled” being treated like we’re unthinking masses. I’m especially tired of the feminist movement – you know, one that allegedly wants equal rights for all people, including women with disabilities – doing this. It makes me angry because I’m a feminist as well as a woman as well as a person with a disability as well as someone who is not the pawn of anyone, thank you very much.

Some people with disabilities support the right to die. Others do not. Others do in some cases and not in others. Each of us has come to the conclusions we have because we are reasoning individuals. Gosh, some of us are even feminists who use a feminist lens to come to our decisions, regardless of which of the many places on that particular spectrum of opinion we find ourselves.

People with disabilities deserve better treatment than you have given them. We are not a throw-away line so you can score some sort of points. We are people, and I’m appalled that a feminist blog like Ms would publish something that would treat us as otherwise.

Frankly, I am so fucking tired of this shit. I’m tired of smiling while feminist organisations treat people with disabilities like they’re afterthoughts and problems to be solved. Like we’re just pawns in politics, like we need to be appeased but never spoken to or considered, like we’re too angry or not angry enough, like we have to push this fucking rock of dis/ableism uphill while you – our “sisters” – stand by and politely look away.

Do you remember Beijing, Ms Magazine? You’ve talked about it a lot lately. You know what I know about Beijing? I know the accessibility tent was inaccessible to people with disabilities. [transcript follows]

“We will achieve our rights and the respect we deserve as women with disabilities.” “Because the issues of women with disabilities have often been excluded, the goal this year was to make sure the concerns of disabled women were addressed.” Oh, hell, just watch the whole damned thing – it’s subtitled – and see the commitment feminists made to women with disabilities. Ask yourself, seriously, Ms Magazine, why your new blog has decided not to talk much about women with disabilities. “No woman who attends this conference should be able to leave Beijing without thinking about the rights of women with disabilities.” Do you?

You know what? If that’s something you can’t do, let me sum it up:

Nothing about us without us.

You wanna talk “about” “the disabled”? How about talking to us? How about letting us talk for ourselves?

How about treating us – people with disabilities – the way you would like women like yourselves to be treated? As though we have some understanding of our own experiences, our own opinions, our own thoughts. As though our thoughts do not belong to anyone but ourselves?

As though we are thinking beings?

Again, my name is Anna. I, like you, am a woman, and I am also a person with a disability. And we deserve better from you.

Sincerely,

Anna.

Please note: This thread is meant to be about the continued marginalization of people with disabilities in the Feminist Movement. I won’t be approving any comments about Kevorkian or related discussions.
Continue reading An Open Letter to Ms Magazine Blog

Go educate yourself (please!)

Image description: A shocked-looking cat perches on a chair, staring straight at the camera. Text reads: Concerned cat is just looking out for your best interests when she says that your tone might be alienating well-intentioned potential allies who just need a little polite education.

[Image via Tlönista in this comment thread at Flip Flopping Joy. Description: A shocked-looking cat perches on a chair, staring straight at the camera. Text reads: “Concerned cat is just looking out for your best interests when she says that your tone might be alienating well-intentioned potential allies who just need a little polite education.”]

One unfortunately common response to marginalized people saying that there’s a problem is the “Educate me NOW” demand from “well-intentioned allies” who totally mean well, but they just lack education on these issues and so just can’t understand what the fuss is all about.

I am using the following example not to appropriate from the awesome anti-racist work that Jessica Yee and the fabulous Racialicious crew (and countless bloggers around the web!) do on a daily basis, but rather for two specific reasons: 1.) I have already talked about my personal relationship with this oft-used derailing tactic rather extensively, and could probably talk about it ’til I’m blue in the face; 2.) anti-racist activism and disability activism are not completely separate, independent social justice strains — many of us who are involved in these activist projects are, in fact, fighting similar (though NOT completely analogous) battles. For me, claiming an identity as a feminist disability activist has entailed doing my best to fight racism and white privilege alongside fighting for disability rights. This is because disability and race intersect in many, many ways — sort of like how disability and gender, and race and gender, intersect. In other words, this is not just a disability issue, or a feminist issue,  or a trans* issue, or an anti-racist issue; it affects many of us in the social justice blogosphere, if in differing ways.

The “educate me now because I want to learn, marginalized person!” response played out, yet again, fairly recently in the comments to a post on Bitch authored by Indigenous activist and writer Jessica Yee. [Full disclosure: Some of us here at FWD guest blogged for Bitch as the Transcontinental Disability Choir.] Jessica had written a post on white hipster/hippie appropriation of native dress and why it’s not only ridiculous, but racist. Makes sense, right? (If it doesn’t, you might be at the wrong blog. Or go read this. I don’t know.) Overall, this piece seems like it would fit right in on a website for a magazine that is dedicated to showcasing “feminist response[s] to pop culture.”

And then the comments started rolling in, and so did the “but you have a responsibility to educate people who mean well!” trope:

I’m sure this is in fact extremely annoying. However, you might consider that when people bring that up, they’re not saying, “Hey I’m just like you and I totally understand what you deal with,” they’re trying to make a connection and learn something. Ignorant people are a pain in the neck, but they’re mostly not trying to be ignorant on purpose.

I‘m merely suggesting that if this is a cause you deem worthy of championing, then you should have a prepared source of information for them—be it this blog, book titles, or documentaries. Encourage them to learn more about THEIR history and perhaps you’ll draw a new soldier to your army.

It seems somewhat contradictory to put stickers on your laptop that indicate a Mohawk heritage and then rudely dismiss a stranger who expresses an interest in your advertisement. Perhaps a better way to accomplish your agenda (whatever it is) would be to engage in polite and open-minded conversation with those who mistake your stickers for an invitation.

Thea Lim at Racialicious pretty much nailed it in her recent post on what went down, entitled “Some Basic Racist Ideas and some Rebuttals, & Why We Exist” (which I highly recommend that you read in full, by the way). An excerpt:

This kind of hey-let-me-help-you-achieve-your-goal-by-suggesting-you-be-more-radio-friendly response totally misunderstands (and appears disinterested) in the anti-racist project, because it assumes that anti-racism is all about convincing white people to be nice to people of colour.   In other words, it assumes that anti-racism revolves around white folks.  Like everything else in the world.

Anti-racism and people of colour organizing is not about being friendly, being appealing, or educating white folks. While individual anti-racist activists may take those tacks to achieve their goals, the point of anti-racism is to be for people of colour.

I completely agree with Thea here — and I believe something similar applies to disability activism. That is: Those of us with disabilities are not here to make abled people feel comfortable, to hold their hands as they have a Very Special Learning Experience (most often, it seems, at our expense), or to make them feel good about themselves. I, personally, don’t care how “good” your intentions are, or that you reallllllly wanna learn, or if you think I’m being mean by not dropping everything to educate you when you demand it.  While I definitely don’t want to speak for Jessica, Thea, or any of the Racialicious contributors — or for people of color who do anti-racist work — I suspect that they may feel similarly about white people who come into PoC, WoC or other anti-racist spaces and demand that whoever is doing the activist work must halt whatever discussion is going on and educate them, now, because they are good “liberal” white people and have such good intentions, and you PoC want white people like me as allies, right? And if you don’t drop everything and rush over to educate me, well, you’re just a big meanie who must not want my support after all (such “support” is often conditional, and based upon whether the marginalized person can make the non-marginalized feel comfortable at all times), or you just want an excuse to be racist toward white people! Or some other ridiculous thing.

For me personally, the willingness that I “should” have to help well-meaning folks learn is also an energy issue. I am a person with disabilities, several of which I have written about at length on this website — and one of which is a pain condition subject to flare-ups. Thus, I have to manage my time and energy extremely carefully. Having to explain basic concepts over and over again to strangers on the internet because they’ve deigned to tell me that they “want” to learn — and some of whom may think, by extension, that they are somehow entitled to my time and energy — takes work. Writing takes work; additionally, a lot of bloggers do the blogging and responding to comments thing for free, on their own time.

And sometimes, those of us with conditions that intersect with our ability to do this work end up burnt out, frustrated, or we lose our patience. Though these end results are often nothing personal, they might read like it, and we end up paying the price energy-wise only to have that person who realllllly wanted to learn petultantly respond with something like, “You must not want to educate me, then, if you’re not up to answering all of my questions!” and leaving in a huff. But they reallllly want to learn. . . that is, if someone else does the brunt of the work for them and/or gives them good-ally cookies for just wanting to be educated about all this social justice stuff. Merely wanting is not enough; you have to actually follow through for your good intentions to matter.

There is, thankfully, a solution to this problem: those people who say, or comment, that they realllly want to learn must take responsibility for their own learning. There are several ways that this can be accomplished, among them lurking on blogs for a while before one starts commenting, reading a site’s archives (and most sites have them!), picking up a book (or two), reading some articles online or off. Certainly, there are a lot of things that are privileged about this assertion; of course, not everyone has the time to read about social justice, lurk on blogs, or take similar steps. But what is also privileged is the putting the responsibility for your own 101-type education onto someone else — someone who might not have all of the energy, time and patience that you might.

[A slightly different version of this post has been cross-posted at ham blog.]

When Accommodations Conflict (Continued)

Reflecting on the extremely thought provoking post by abbyjean earlier, I was walking to breakfast with The Guy (caution, try not to walk while lost in thought, OYD) on a day when I was low on sleep, high on pain, and therefore using my cane. (edit: I just saw my typo! I had a funny visual of me trying to balance on a can! HA!)

Conflicting accommodations do not always mean that the conflict will occur between separate PWDs. For example, on a high pain day, I am in desperate need on my cane due to the intense pain in my hip and legs in general (though, which leg I want to use if for is debatable, even though I favor one hip). When I am that fatigued, however, using the cane is an intense use of my spoons, to the point where if I have too much to do I can’t even bother because it just winds up with me on a chair or bench in tears. Or the cane causes additional pain in my back or shoulders.

There are others that come to mind. My medication provides me with more pain free days, which is a good thing. This is an active choice I made with the advice of my doctor whom I was lucky enough to find at this duty station. The flip of that coin is that I have side effects which means that I can not always drive places, or have the energy (HA!) that I want to do things with my family, to name a few. This might not sound like a huge accommodation, but it makes a great impact on my family life, people who play a huge role in my care.

I know that some people use caffeine to both relieve some pain and migraine effects (I sometimes do) but that this has the crash effect at the end of the day (for me it means my spoons run out faster).

So, gentle readers, what accommodations do you have/use that conflict…uhh…internally? What individual needs to you have that you have to weigh daily?

An OYD Airline Rant

I won’t apologize for her actions and I’m not sorry for what happened to you. It’s not in our contract to assist passengers with their luggage and we reserve the right to refuse assistance to anyone. If that’s what you need, then perhaps in the future, you should make other travel arrangements.

Well, to say the least, that is not the kind of response I expect to get from a customer service representative; not the Entry Level Line Memorizing Oh Dammit Did You Really Ask For A Supervisor people, and I certainly don’t expect it from a supervisor. Were I to get such a resonse I would certainly suspect that something slightly sinister was going on here at said establishment where I was complaining. After all, if I am speaking to a Customer Service Supervisor, things have reached a fairly epic proportion of shit deep inconvenience, because I pretty much go out of my anxiety issue way to avoid having conversations with people I don’t know in person (let alone on the phone). Because I have to weigh the cost of spoons spent on holding myself together long enough to get out the details of what happened, as I did recently with my complaint to Patient Admin about Nurse Midwife V, versus the benefit of getting shit cleared up so it doesn’t happen again to other people who may follow after me and patronize a company, needing services, like in this case, travel.

But here, this is exactly the case. Here, evilpuppy from Incoherent Ramblings From a Coffee Addict, who, expending great energy, spoons, and emotional well being tried to file a complaint on the completely despicable treatment doled out by the staff at United Airlines, and received this condescending and otherwise completely, well, jack-assed and ignorant response from someone who should have a working knowledge of how an employee on an airplane should treat a person with a disability. Not in an email response or even in a letter form; this response was delivered face to face. All of this after she already went to the trouble of pre-arranging accommodations for a wheelchair and made sure to note with the ticket agents — multiple times — that she would need assistance on the plane.

Just a small dose of what evilpuppy endured:

The wheelchair left me off at the door and after making sure I had all of my belongings, he turned around and left. I boarded the plane and made my way back to my aisle seat where I set down my special seat cushion and lumbar brace before looking around for a flight attendant to help me put my luggage in the overhead compartment. The attendant standing in the front section of economy was a blonde woman probably in her late 40s-50s and I called her over to explain that I needed her assistance because I wasn’t capable of lifting my luggage due to my disability. To my surprise, the attendant rejected my request while excusing it by saying: “If I helped everyone do that all day then MY back would be killing me by the end of the day!” I asked her how I was supposed to get my luggage stowed and her answer was: “You’ll just have to wait for someone from your row to come back here and ask them to give you a hand.” When I asked what would happen if no one would, her response to me was: “Well, normally a passenger is around to overhear something like this and they’ll offer to help with it on their own. You’ll just have to ask someone when they get back here.” Then she turned back around and went up to the front seats where she waited to “assist” other passengers.

I was completely flabbergasted, but with no other option, I sat down to wait and pulled my carry-on suitcase as close as I could to try to get it out of the way of the aisle. As I’m sure you’re aware, however, your aisles are considerably narrow and even my best efforts left half of even my small carry-on suitcase in the aisle. What’s more, rather than help me, most of the passengers simply knocked into my suitcase and shoved past me on the way to their own seats. Every time they hit the suitcase, it in turn hit me and jarred my back more and more with each strike. The plane wasn’t even half boarded and it already felt like the pain medication I’d taken less than a half hour prior to entering the airport had worn off as though I hadn’t taken it at all.

Now, I have endured some pretty meh-hessed treatment at the hands of customer service personnel. I have seen other people treated pretty horribly. I have had my disability status questioned, rejected, laughed off. I have had it compared to the fatigue of being a stay at home mother of two children (I am not downplaying the work of SAHMs, having once been one myself, but these are apples and well NOT APPLES!), and of course DIET AND EXERCISE! but never have I had someone so flatly refuse to acknowledge that 1) their co-worker/staff/employee so royally screwed up and 2) that their co-worker/staff/employee’s royal screw up really fucked my world up and over in a way that might just have rendered my next few days useless, since that might mean that I will then be spending the next two or three or more days in bed or on a couch with my feet up trying to recover from the aforementioned loss of spoons and emotional well being.

To put it concisely: Wow. That is messed up.

Not to mention, I am not sure I have ever patronized any business where it was standard procedure for other paying customers to assist a person in lieu of the paid employees who are standing around. It just seems lately that airlines are giving me more and more reasons to not give them more money than I can afford to basically be treated like crap.

I have never been told that it wasn’t the job of the person whose actual job it was to help me.

OOPS! UNITED STEWARDESSES! ITS LIKE TOTES YOUR JOB!

Once passengers are onboard the aircraft, our flight attendants can help with stowing and retrieving carry-on items, as well as providing wheelchair assistance to move passengers to and from the aircraft lavatory (although they cannot provide assistance inside the lavatory). Flight attendants may also provide assistance with taking oral medication, identifying food items on meal trays and opening packages.

Is there a single airline that isn’t treating humans like chattel these days? That isn’t outright pissing me off for one reason or another (well, Korean Air hasn’t yet, but I haven’t flown International since the Christmas debacle). I am beginning to think I will need to take a boat to get home the next time. And Space A military flights are a privilege I am willing flex more and more if I have the time and pain medication available. It might be worth it to not be herded on and off a plane like cattle, denied bathroom and water privileges for hours on end (which can be living hell to a PWD).

Oh, and also:

Then the flight is delayed. We sit on the runway for some time, and because of the new federal law requiring that airlines not keep people on the tarmac for more than 3 hours, they let us off for about 5 minutes before insisting we all get back on because we are leaving right now. We do not leave right now, or for several more hours. They let us off the plane again. Shortly thereafter, they insist that we all get back on the plane because we are leaving right now. We do not leave right now.

At some point after the second or third round of boarding and being told to sit down because we are leaving right now, a man towards the back of the plane stands up to get himself a cup of water. For context, this flight is (or was supposed to be) a 7:40 a.m. flight from Atlanta to New York, landing around 9 a.m. It is full of (mostly white) business people in suits. This man is brown, and appears to be South Asian. A flight attendant at the front of the plane, near where I’m sitting, sees him stand up and panics. She throws open the airplane door and starts yelling at him that he isn’t allowed to stand up, and that he needs to exit the plane immediately. The man is confused, and says, “What? I was only standing up to get a cup of water.” She yells out, “I don’t care, you’re off the flight! Get your things, you’re off the flight!” Water Man starts arguing with her about how he just wanted a glass of water, and he is happy to sit down now, but he’s not getting off the flight. The flight attendant says that she feels threatened and gets a supervisor, who in turn gets airport security, who in turn tell the man that he is going to be arrested and charged with a felony if he does not exit the aircraft. The man, probably smartly, exits the aircraft.

Like Jill passes over in her rant here, with all the hype of racial profiling being trendy, if you assert your right to a simple thing like a drink of fucking water while daring to be brown you can be thrown off of a flight.

Thankfully The Consumerist has picked up on this (although “who says she’s disabled”? Could we pour more salt on this?). I am not entirely sure how much good this does things like this, except that I give them all kinds of link love on Facebook when I find something relevant, so maybe this went viral? I would however, like to point out that the comments at The Consumerist are some of the worst disability blaming shite I have seen in a while (and it shows how safe my social justice bubble is). It seems that we, the PWDs, should not dare to carry on a bag if we a) need a wheelchair to get on a plane b) can’t lift it ourselves and c) have the audacity to want to be treated JUST LIKE EVERYONE ELSE ON A PLANE. Also, don’t forget, if you take pain medication, and/or dare to have a drink on the plane to settle your anxiety you are not to be believed when you make claims as to the crappy ass treatment you received. Nope.

Because there is no way in the entirety of the multiverse that you would ever remember something as abusive or as hurtful or as downright dehumanizing as what Dina the Customer Service Supervisor at SFO said to you, for the rest of your life, or how it made you feel at that moment in dog damned time. Evah.

PWDs are not human. We are not people who should be existing in the same world with those good, hard working, abled-bodied people who can do everything themselves. To hell with us, for not being able to lift our bags! Forget that we just maybe had to scrape together all the money we had to afford the damned flight in the first place so that extra twenty five dollars is NO BIG DEAL JUST CHECK YOUR DAMNED BAG YOU LAZY STONED JERKS!

Silly me for expecting human treatment for all humans.

Via commenter Livre at The Consumerist, United is apparently attempting to contact (or has, I am looking into it) in true “Oh Snap Kevin Smith Has One Million Twitter Followers DOOOOOO SOOOOOMETHING” fashion to try and do damage control sort this out.

Sort this out? That would be something, now, wouldn’t it?

h/t to my friend Kate on Facebook