Category Archives: social attitudes

Recommended Reading for 3 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?

It’s Your Fault! by that stunning and mysterious being, Chally, at the Don’t DIS My ABILITY blog:

The thing is, people with a disability need accommodations. Accommodations aren’t optional extras, they aren’t something we can give up if we try a bit harder. Neither are we out to get all the money/spots/benefits at the expense of the rest of the population.

Despite his disability, he wages war on HIV (I know, horrible title) by Chaitra Devarhubli at DNA India:

[Amrut] Desai visits various villages in Gujarat, where he conducts programmes on AIDS and educates villagers regarding the same.

UK: Access All Areas: Disability survey

Some 90% of people surveyed by the BBC believe the government should provide funds to make the workplace accessible for people with disabilities.

But 40% felt disabled people turned down job offers even when they were physically capable of doing them.

Deaf moviegoers sue Cinemark theater chain at the Associated Press (US):

Kevin Knestrick, an attorney for the plaintiffs, says Cinemark Holdings Inc. is the only one of the nation’s three largest movie chains not to offer closed-captioning equipment.

Sierra Leone: Disability Bill might become an Act on Friday by Poindexter Sama at Awoko:

it will institute, upon its enactment, a Disabled Commission, provide free education and vocational training for persons with disabilities at required levels, make provision for free medical care, ensure mobility in public buildings and public transports and a host of other facilities necessary for disabilities in all forms.

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What is Ableism? Five Things About Ableism You Should Know

Ableism is discrimination against people with disabilities, including the expression of hate for people with disabilities, denial of accessibility, rejection of disabled applicants for housing and jobs, institutionalised discrimination in the form of benefits systems designed to keep people with disabilities in poverty, etc.

1. Ableism has a dictionary definition.

The Oxford English Dictionary traces the world ableism back to 1981; likely the word was in use amongst activists before then.

[< ABLE adj. + -ISM suffix, after RACISM n., SEXISM n.2, etc. Compare ABLEIST adj., and also earlier ABLED adj. 2, ABLED n.] orig. U.S. Discrimination in favour of able-bodied people; prejudice against or disregard of the needs of disabled people. 1981 Off our Backs May 39/1 ‘Ableism’that is, the systemic oppression of a group of people because of what they can or can not do with their bodies or mindsis the result of..ignorance. 1993 R. HUGHES Culture of Complaint iii. 162 But certainly clause (3) made it clear that he was against racism, sexism, ableism, lookism and any of the other offences against social etiquette whose proscription by PC was already causing such mirth and laughter among the neo-conservatives. 1994 Canad. Woman Stud. Fall 92/2 Just as there is racism in the feminist movement, there is also ‘ablism’. Able-bodied women have not fully accepted women with disabilities. 2006 C. OYLER & B. HAMRE in C. Oyler Learning to teach Inclusively viii. 145 Although racism and sexism..are recognized as serious challenges to fairness, equity, and democracy,..ableism is often not even acknowledged.

It defines ableist as “Characterized by or exhibiting ableism.”

I mention the dictionary definition because people often claim that ableism is a made-up word that internet activists created just to annoy them, as opposed to a word with history that people with disabilities ihave been using to define their experiences for at least 30 years.

2. Ableism can be deliberate.

A. The Canadian Government went to court so they could continue to make their web content inaccessible to screen readers.

B. Clint Eastwood argued vehemently that 10 years was far too short a period of time to expect that businesses would follow the Americans with Disabilities Act (ADA) and painted himself as a little guy fighting back against the “sleazy lawyers” preying on “the disabled”, rather than as someone who had been breaking the law for 10 years and was now choosing to fight for his right in court to continue to do so. John Stossel argued earlier this year that the ADA might require businesses to be accessible, and this was unacceptable 20 years after the ADA had been passed. [Content warning: John Stossel]

C. Where’s the Benefit has spent the last few months detailing out how cuts in spending will affect people with disabilities. It’s hard to pick just a few examples. How about the Member of Parliament who declared that anyone who was on Twitter too much wasn’t really disabled. Or what Disability Living Allowance (DLA) actually does being misrepresented by both the government and the press?

D. Dave Hingsburger: Service Interupted:

‘Purposeful exclusion,’ I said, ‘there is no way anyone could design this, approve this and build this, without knowing that people with disabilities will never be able to use it. That makes it purposeful. The fact that only certain people can now use it make it exclusion.’

‘I’m sorry,’ she said but I interrupted.

‘This is bigotry in concrete, this is prejudice made of steel and glass, this is how builders and designers and hotel managers spit in the face of those with disabilities. They knew, they didn’t care, they did it anyways.’

E. Politicians across Canada, who make 30 second advertisements that are carefully scripted to make the best impact, don’t use the subtitling option when they upload those same 30-second scripted videos to YouTube. But I guess some politicians are okay with their videos looking like this (image description below):


Image description: Michael Ignatieff (older white dude in a sensible blue shirt and tie, his hair a bit windblown) with the caption “Don’t let anybody into Medicare”.

Actual quote: “Don’t let anybody intimidate you”.

3. Ableism has an academic definition.

Here’s a good example:

Ableism is a form of discrimination or prejudice against individuals with physical, mental, or developmental disabilities that is characterized by the belief that these individuals need to be fixed or cannot function as full members of society (Castañeda & Peters, 2000). As a result of these assumptions, individuals with disabilities are commonly viewed as being abnormal rather than as members of a distinct minority community (Olkin & Pledger, 2003; Reid & Knight, 2006). Because disability status has been viewed as a defect rather than a dimension of difference, disability has not been widely recognized as a multicultural concern by the general public as well as by counselor educators and practitioners.

Laura Smith, Pamela F. Foley, and Michael P. Chaney, “Addressing Classism, Ableism, and Heterosexism in Counselor Education”, Journal of Counseling & Development, Summer 2008, Volume 86, pp 303-309.

You can also get a degree in Disability Studies. There is a Disability History Association. There are several academic list-serves dedicated to discussion disability. You can go to disability-studies focused conferences. You can go to Deaf-studies focused conferences. You can get a degree in Deaf Studies. You can read a wide variety of academic books that discuss the history of ableism.

Or you could read people talking about their lives on their blogs. There are a lot of blogs where people talk about experiencing ableism.

4. Ableism can be accidental. This doesn’t make it okay.

A. I don’t think Google woke up one morning and decided to make some of their products completely inaccessible to certain users. I know they managed to pull it off anyway.

B. I don’t the mainstream media woke up one morning en masse and decided to ignore protests in support of the Community Choice Act. I know they managed to do it anyway. More than once.

C. I don’t think Canada’s Minister responsible for Disability-related issues deliberately sought out a wheelchair-inaccessible space for her constituency office. I do think continuing to have it 7 months after this was pointed out to her in Parliament is deliberate, though.

5. Ableism kills.

Record of the Dead: October 2010
Record of the Dead: September 2010
Betty Anne Gagnon and Murder Most Foul
Quick Hit: Parents of Disabled Children
Tracy Latimer is dead because her father is a murderer

They Call it ‘Reverse Discrimination’

Affirmative action has to be among one of the most contentious, controversial, and misunderstood social policies. I encounter all kinds of bizarre attitudes when it comes to talking about affirmative action, not least of which is people who insist on calling it ‘reverse discrimination’ in some sort of backhanded attempt at suggesting it’s just as evil as denying people opportunities on the basis of being female, say, or a person of colour, and should be abolished on those grounds. Because, oogity boogity, under affirmative action, all people are not considered blank slates with universal experiences, and thus, it’s a discriminatory policy.

Here’s what affirmative action is: A policy and programme adopted in many regions of the world to encourage employers and educational institutions to consider the history of discrimination against certain classes of people when it comes to admission and hiring decisions. Such policies usually cover women, people of color/nonwhite people, and people with disabilities. The goal of affirmative action is to counteract the effects of centuries of discrimination to create more opportunities for oppressed groups of people by not shutting them out of education and employment opportunities, acknowledging that prejudices are often deeply internalised and people can’t overcome them by sheer force of will. (And are often not aware of how deep they run.)

Here’s what it isn’t: A demand to always hire/admit the marginalised person, no matter what. Yet, it’s often framed that way, as seen in the ‘reverse discrimination’ slang. Everyone, it seems, has a sob story about how ‘someone they know’ didn’t get a job because there was a less qualified Black woman or disabled man or someone else who was there to swoop in and take the employment opportunity away, riding smugly on a cloud of affirmative action1. I have had dyed in the wool liberals informing me with clear, innocent faces that their white, middle class, nondisabled, heterosexual, cis friends and relatives have been horribly oppressed by being passed over in favour of ‘underqualified’ marginalised people who just happened to compete for the same jobs/places at school. They inform me that this is unfair and awful and should stop immediately because it’s wrong.

People. No.

Here’s what affirmative action is about: When you have, say, an employer who is considering a group of job applicants, that employer is asked to consider the applicants equally. Not to, for example, throw out an application from a woman who uses a wheelchair for mobility because it will be ‘too hard’ to accommodate her. To give everyone reasonably qualified a chance to interview and to honestly and fairly evaluate applicants for a job, rather than deciding that someone is automatically unfit on the basis of personal characteristics. And, yes, if you have two equally qualified candidates, one of whom happens to be a member of a dominant group and one of whom does not, to consider preferentially hiring the person who has not benefited from discriminatory practices throughout life. No affirmative action policy demands that people hire the less qualified people, deciding whom to hire solely on the basis of who is the most oppressed.

People talk about ‘quotas’ and they talk about how businesses and educational institutions ‘get in trouble’ if they don’t have enough ‘token minorities’ and they miss the  point entirely. I see this depicted everywhere from pop culture (Cuddy yelling at House for not having a female physician on this diagnostic team) to casual interactions with people who inform me that they ‘would’ apply for a job somewhere but ‘some Latina will probably snag it from me anyway because they’re worried about not having enough brown faces behind the front desk so what’s the point.’ Actual cases where businesses and schools have been punished for failing to adhere to affirmative action policies haven’t involved a government auditor checking to see how many marginalised people they have, but documented discrimination against marginalised groups in interview and admissions policies.

Do affirmative action programmes in colleges and universities ask for more leeway on things like test scores? Yes, they absolutely do, and there’s a reason for that: People in oppressed classes are less likely to do well on standardized tests, for a whole lot of reasons ranging from unequal access to educational opportunities to biases built in on the tests themselves. This means that, yes, when an applicant identifies as poor, for example, that the school will weigh that in the student’s application and will consider the impact that poverty might have on test scores and academic performance. The school won’t say ‘oh, we should let a clearly unprepared student in because she’s from a lower class background,’ but the school will say ‘this student clearly has potential, even if she’s not there yet, so let’s give her a chance, given that she’s had an uphill slog to get to the point where she can even apply for college.’

What this asks people to do is to consider the historic role of discrimination in access to everything from education to employment, to recognise that because of the widespread and deep biases in society, some people can’t access the qualifications/experience that others can. And, yes, affirmative action does ask people to consider marginalised people preferentially, in the hopes of balancing out internalised biases and attitudes; trust me, people, in terms of how people actually behave, it’s a wash.

People say this is ‘unequal treatment’ and that ‘if you want to be treated like everyone else, you need to be held to the same standard.’ What they miss is that the standard is inherently discriminatory and biased. Holding everyone to the same standard is effectively an act of discrimination, because it demands that people fit into a mold they can never fit into, reach goals they can never attain, because the deck is stacked against them from the start.

It’s an attempt to compensate for privilege to say that the lived experiences of applicants should be considered to contextualise their applications. Not an act of discrimination. A corrective measure, an attempt to address and rectify an entrenched culture of prejudice by creating more chances for people who have historically been denied those chances, is not ‘reverse discrimination.’ And I’d like to humbly suggest that people retire that particular slang term, post haste.

  1. I note that this usually includes the assumption that the marginalised candidate was automatically, inherently, less qualified.

Recommended Reading for 19 November, 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?

little light at Questioning Transphobia: clamavi ad te. Please note that the post discusses suicide, abuse, and murder of trans people. If you think you can handle it, though, it is powerful reading, as is everything little light writes.

When you have been told you are less than human–less than sacred–less than beautiful–your community has failed you. When you believe it, it is because your community has failed you. I do not intend to mince words. … You deserve better. Because you are not the problem. You are not broken. You are not worthless. You are not a problem and you are not a mistake.

Liz at Dis/Embody: Thoughts on World Usability Day:

Now, of course, usability is not the same as accessibility; it is focused on ease of general use, for a mass audience. And, usability doesn’t always incorporate a universal design perspective in which the needs of those who face the most challenges are centered, with the understanding that products designed for that group may also be more usable by others.

That said, usability and communication is an interesting theme, as it seems to implicitly tie back to media accessibility in particular.

Interviews conducted by Meena Bakhtash at the BBC: Voices: Disability and the Hajj to Mecca:

The annual Hajj pilgrimage – a religious duty that every adult Muslim is expected to do once in their lives – can be a tough challenge.

But the obstacles are infinitely greater for Muslims with disabilities, who choose to take the journey.

Melissa Jenkins at the Sydney Morning Herald: Disability package gets tick:

The Victorian government is taking the right approach by directing the majority of its disability package towards early intervention, advocacy groups and unions say.

Kirsty Whalley at This is Local London: Disabled girl from Norbury a “health and safety risk”, says school

A disabled 11-year-old girl has been rejected by an academy school because she poses a “health and safety risk” to other children.

That’s all for this time. Send your links to recreading[@]disabledfeminists[.]com. Let us know if/how you want to be credited.

Dear Political Left: Enough With the Scooter Hate, Already

Every time there’s some political event where a bunch of people gather, some of those people are going to be using scooters (and wheelchairs! and canes! and walkers! etc.). And, invariably, people who disagree with the politics of that event are going to zero in on the scooter users, targeting them as objects of hatred and rage because, well, they’re there. And they’re convenient. From the political left, which prides itself on its ‘sensitivity’ and ‘respect for all people, even people it disagrees with,’ this is especially galling.

Thanks to the tea party in the United States, which is on the rise, there are plenty of events for people to pick from when it comes to selecting the ‘perfect’ scooter user to abuse. Here’s what I’ve learned about people who use scooters, from my fellow people on the political left: they’re old1 and/or fat, lazy, and stupid.

The scooter hate never seems to get old, and people never seem to think there’s any problem with it. It’s gotten to the point where when I’m on a liberal website and I see a picture of a scooter user, I scroll by really quickly so I don’t have to read the caption/commentary, because I already know what it’s going to say. There will be, say, a picture of an older person on a scooter, holding up a sign protesting government health care, and the caption will talk about how stupid and hypocritical the person is, sitting on a Medicare-funded scooter and bleating about government health care (I had no idea you could tell a scooter is funded by Medicare just by looking at it!).

I disagree with a lot of the politics on the right in this country. Vehemently. Just for example, the entrenched opposition to government-funded health care. But while I may disagree with the ideas being espoused by a particular political sign, I attack the sign, not the person holding it. I’m more interested in confronting and engaging with the ideas these people are promoting and I find it, well, interesting that many people on the left apparently aren’t interested in ideas, they’re interested in attacking people. It would be just as easy to challenge the assertions made on the sign without dehumanising the person holding it, but people seem to  have a hard time with this concept.

Now, the left is not alone in this. Scooter hatred is pretty universal. I’ve seen plenty of hateful stuff from the right, too, and I’m not giving the right a free pass here, but since I am a member of the left, I feel like it behooves me to talk about how people who share my politics need to clean house before I go storming over to the right to tell them what’s what. The fact that there are a myriad of left-slanting scooter hate pages on Facebook tells me we have a long way to go when it comes to confronting the deeply embedded ableism on the left.

There are a lot of examples of ableism on the left. Writing about liberal ableism, Annaham says:

For these liberals, everyone deserves respect and opportunity — so it follows that disabled people absolutely deserve to participate in society! Until, of course, accommodations for PWDs conflict with the desired pacing or focus of the liberals in question — or until the PWD no longer conforms to the “angelic” and/or “in need of uplift by the kind liberals” image. Yet often, these same liberals still insist that they can’t be ableist — they’re so progressive!

And, of course, there’s that very distinctive subset of liberal ableism, hipster ableism:

The most insidious thing, for me, about hipster ableism and other hipster -isms is that they are a thinly veiled way to continue being a prejudiced bigot. People can go right on thinking their prejudiced thoughts, and they can hide behind the shield of “humour” and “you just don’t get it” when they are challenged. Hipster ableism, far from being edgy and transgressive, is in fact very safe and affirming.

No indeed, the left is no stranger to bigotry and hatred shielded behind ‘jokes.’ People abuse scooter users in no uncertain terms, making it clear that they view them as subhuman, as worthless, despite the fact that, gasp, some people who use scooters? Are also members of the political left. And are perhaps not stoked at behind characterised the way scooter users routinely are by other members of the left.

This country prides itself on a premise of ‘lively political discussion,’ claiming that even people who disagree can have productive conversations about political issues and ideas. Dehumanising people is not my idea of ‘lively political discussion.’ In fact, it’s pretty much the opposite. When all you have to say in response to political ideas you don’t like is ‘you are not a human being and you are disgusting and you should die,’ that pretty much tells me that you are incapable of engaging politically with people.

Here’s Bill Maher on scooter users, in a quote drawn to my attention by Lauredhel:

New rule: If horror zombies really want to scare me, they have to walk faster. I don’t even have to run from zombies. I can saunter, amble, stroll, promenade, stop for coffee at Peet’s. Zombies, you may be a disgusting, barely ambulatory member of the undead, but so is this guy-[slide of overweight man riding motorized scooter-chair]-and he can catch me.

Leftie favourite Wonkette:

Oh, ye Armies of the Night! Rise up … or, hell, just remain seated. Remain seated, ye lardbottoms, and also stick to daylight hours, so you don’t run into each other, on those ridiculous scooters paid for by Socialist Medicare.

Wonkette also publishes and makes fun of emails from users asking them to reconsider their hateful language on scooter users. This is just the tip of the iceberg, people. I’ve lost count of the number of sites I’ve stopped reading specifically because of the way they talk about scooter users, let alone the other countless examples of ableism strewn across their pages.

Seriously, stop with the scooter hatred already. I don’t know how else to say it. I could say it’s boring, trite, and overdone. I could point out that you are assaulting people in your own movement, people who share your politics and want to engage on the same level you do with the political system in your country. I could talk about how it makes it look like you can’t defend your political ideals, when you can’t even muster a response to opposing politics. Or I could just say that as soon as the scooter hate comes out, I tune out, because I know that you have nothing of interest to say to me.

  1. A nebulous concept that seems to shift across decades depending on who is speaking

Keeping track

One of the more bizarre stereotypes (if one can call it that) about people with fibromyalgia is that we obsess over “every little ache and pain,” to the detriment of ourselves and much to the apparent annoyance of the “normal” people around us.

Here’s the thing: If I were to obsess over my pain in the way that “obsessing” is traditionally defined, I would never get a damn thing done. This is why keeping track of my pain levels each day is so important — so I don’t have to obsess over it. It takes five minutes tops to jot down some notes at some point during the day; if that fairly small action equals “obsessing,” I shudder to think what the alternative might be.

I have a pretty full schedule. I go to school full-time (I’m getting my M.A.), and commuting to school via public transit tends to take a lot out of me even though I live somewhat close to campus; this is to say nothing of actually going to class, participating and being fully present in discussion and activities, and getting work and research done outside of class. And then there’s all of the stuff that’s not school-related: spending time with my partner and with family and friends, taking care of my dog, meal preparation, living space upkeep, creative work and hobbies, and other everyday things that are too mundane to list here. All in all, many of these things are par for the course in “mainstream” life. The ability to do all of these things and more in a given day, however, is something that many abled people seem to take for granted. Given my pain issues and the fatigue that comes with them, I have had to make quite a few adjustments as to what I can do and how and when these things get done. Often, I have to make trade-offs when it comes to what gets done or what I can do; depending on my pain levels on any given day, I might have to scale back on what I can do. There are days, too, when I can’t do much at all.

And yet, when some of us do have to keep track of our pain levels, make trade-offs when it comes to getting things done, give ourselves space to recoup, take a day (or a few) off, or acknowledge that, hey, maybe “getting everything (and more!) done” in the ways that most “normal” people are expected to is unrealistic and may actively make our conditions worse, abled culture (and many abled people) shows up to tell us that we’re Doing It Wrong, that we should be doing more, or that we should be spending our already-limited energy on other or “more important” things. You’re not doing enough, quit being lazy. If you really wanted to, you could be involved in real activism/you could get a real job/you could just suck it up and stop bothering everyone by talking about your pain. Ignore your pain and maybe it will go away. Your pain can’t be that bad! By adjusting your life to your health condition, you are letting the pain win. Positive thinking! Willpower! Bootstraps!

I have to wonder why some of the adjustments that I’ve had to make, such as keeping track of my pain levels, and then carefully planning what gets done according to how I am feeling, seems so incredibly threatening to some folks. Perhaps it’s that they want to explain away why they themselves do not have these problems and will (they think) never have to deal with illness, pain or disability firsthand, because they’ve lived their lives “right.” Maybe it’s because people living their lives in ways different than themselves is scary and weird. It could be because many people simply cannot conceptualize living with chronic illness or pain, and so they have to make people who do into an “Other” whose decidedly non-mainstream existences, life experiences and habits cannot be understood, or even given consideration, by those in the mainstream.

While small things like keeping track of pain and fatigue levels may seem incomprehensible or weird to people who are not disabled, these adjustments are very important for some of us. To an outside observer, the five minutes a day that I spend noting my pain levels — and my planning of my day depending on my pain and fatigue levels (what a concept, right?) — may seem totally alien, and like it does nothing to combat the stereotype of people with fibro as a bunch of hysterical middle-class women who are obsessed with their physical pain (hello, sexism!). For me, it’s a survival technique, however small and “alien” to people who don’t live with chronic pain or health issues.

How Can Teachers & Professors Help Students With Disabilities?

One of the things we often get asked after one of us, or a guest poster, makes a post about education and accessibility is to tell teachers and professors what they can do to ensure their classes are accessible. I understand and appreciate the motivation for this question, but the problem is that we can’t really answer it with any usefulness because it depends too much on the location you’re in, the access to resources you have, and the flexibility of your educational institution.

There are two things that teachers and professors can do to have their classroom be as accessible to students with disabilities as possible.

1. Learn what your educational institution can do for students with disabilities.

One of the things that student accessibility services often do is ask students “So, what accommodations do you need?” While this is helpful for getting a conversation started, it’s not necessarily in the best interest of the student to have them just come up with a few suggestions and then focus on those. Frankly, most students won’t be aware of what accommodations are available for them, which someone working in student accessibility services would be aware of. (To give an example, I only learned recently that the university that Don dropped out of due in part to difficulties in getting accommodations had the option of adjustable tables for students with disabilities. Having never encountered them before, he never thought to ask.)

As a teacher or professor, being aware yourself of exactly what accommodations are available, and what is required to get them, will allow you to work with your students to ensure that they get the best aid possible. It will also allow you to know what you can do for any students who may be temporarily disabled due to injury or accident.

Last year I was part of a review committee for the university, and learned that none of the professors I asked had any real idea of how they would assist a student with disabilities in getting accommodations, or how they’d need to adjust their academic advising for a student with disabilities. Being that there are whole buildings on my campus that are not accessible to someone who can’t walk up a flight of stairs, which actually prevents students with mobility-related disabilities from taking any classes at all in certain disciplines (a fact that always seems to surprise people when I point it out), this strikes me as something professors, especially those who do academic advising, would need to be aware of.

2. Let students know that you’re aware that accommodations may be necessary and that you’re open to discussing those issues. Let students know how they can contact you if they need accommodations – whether you prefer email or coming by during office hours, or both.

One of the things many universities require students to do is go up to strange professors that they’ve never met before and start discussing their disability. While on the surface this probably looks like “a reasonable amount of self-advocacy”, the students with disabilities I’ve talked to often describe this as the worst part of getting accommodations. They have no idea what they’re going to face. Will it be someone who grudgingly agrees to something, obviously irritated? Will it be someone who rolls their eyes and suddenly starts talking about how easy it is to fake being disabled? Will it be someone who gives them a little “Everyone’s a bit disabled!” speech? Or will it be one of the many professors who are very accommodating and happy to make their class as accessible as possible?

(I assure you, there are many many professors who are happy to help! But, of course, the stories most passed along, and the ones that worry students with disabilities the most, are the ones where something terrible happens.)

Having this conversation also gives you the chance to let any students with disabilities know that you don’t know everything, and that you’re willing to learn what you can do to best assist them.

I believe that a lot of professors and teachers, just like a lot of the staff that works with students with disabilities, really want what’s best for their students, and want them to be able to do well in school. I know that a lot of times there’s only so much they can do, due to lack of funding or lack of assistance from other people in an educational institution. Knowing what you can do can be endlessly helpful to assisting students with disabilities in your classroom.

Thyroid Cancer Treatment Affects the Abled, Healthy. Everyone Panic!

I have a little bit of a problem with people being handed down a mandate that insists they behave in a certain way or adhere to a certain set of guidelines for which they are not provided the means to do so. Usually, these rules or mandates are set by people whose lives the rules will never affect. I see it all the time here on the Garrison — rules that restrict the lives of military spouses set by Upper Brass who wear uniforms and sit in offices all day being briefed by people who don’t have to figure out how to tote around a couple of toddlers, diaper bags, strollers, car seats in case they might need a taxi while running to appointments, getting groceries, and picking up or dropping off older children at school without having a vehicle. I recently witnessed it in hospital policy regarding patients on long-term controlled substance use (something I should write another post about, eh?) — a pharmacist notices a patient prescribed a certain medication for a certain length of time, alerts a committee who sends out a generic letter triggering a “Single Provider” program without anyone actually meeting the patient involved.

Now, I read that a Congressional committee has noticed that patient being treated with radiation for thyroid cancer have been possibly exposing other people to, yes, radiation.

Well, let’s think about this for a moment. In the past, people who had thyroid cancer and who were insured and who were given this treatment were allowed a hospital stay so that the very strict regimen of sterility could be followed without putting extra strain on the patient. Then, someone got an itch and decided that it was just too costly to keep this up and that these leaches could just go home and do their own laundry every day. Not to mention, I am not sure what they are supposed to do with their garbage, how they are supposed to quarantine themselves from their families if they don’t have separate wings in their homes to live in, or how they are supposed to get home if they are weak from treatment and live alone.

The new regulations are supposed to discourage patients from taking public transportation, from staying in hotels, and from a whole slew of other things that really don’t take simple practicality into account. I think we can all agree that not exposing people to radiation is all around a good idea. I have no idea how much we are talking about, and the hyperbolic pictures of HAZMAT masks on the paper edition article I read didn’t help, but it must be significant if it is causing such a stir. Though, spokesman David McIntyre says it is “unclear” if the levels are harmful.

I remember getting a bone scan a few years ago and the tech had to wear a suit, and the dye they injected into me came in a lead tube. I was told I had to avoid metal detectors and public transit for a few days and was given a card to show that I was recently injected with radioactive substances. But I was a single mother, and a sailor, and I had no one else to help me out. Back to work I went, showing my card to security, who walked me through the non-metal detector way. I picked up my kid from daycare later, and drove myself home. I imagine that someone who has no support system who might be in a similar or worse situation would have to make similar decisions. So, I can see how people would disregard directions to go straight home.

Perhaps home is a day’s drive. Perhaps home is filled with young children and has only one car available. A hotel and train ride might be the only option, since the loosened restrictions mean that insurance will not pay for a hospital room that is no longer required. Or perhaps there is no insurance at all, and it was all a patient could manage to scrape up the cost of the treatment in the first place. There are so many reasons that these restrictions are not being followed, and I feel like this article, this committee, and this investigation are looking more at the people who are ‘violating’ the rules and less at the systemic problems that cause them to do so.

So, yes, those poor, unsuspecting people who have fallen victim to the carelessness of these cancer patients who have been so selfish to expose themselves to the world are who we should be focusing on. They are the true victims here, not the people who are trying to get healthy again, whose bodies are fighting cancer, and living with poison in them, and who are also now having to deal with the extra burden of a cumbersome set of rules of conduct for how to navigate live with a poison inside their bodies. The conversation is not, nor never is it, about them, but about the people around them whose lives are affected by their treatments, the ways those treatments impact their lives. All about the abled body, never the chronically sick or disabled unless it somehow affects the healthy and able.

Unless Congress is willing to establish a way to provide a place for these people to stay — all of them — I don’t see how a more enforced set of restrictions is reasonable. You can’t force a person to stay in a place they have to pay for against their will, and you should not be able to punish them because they had to use the resources available to them to survive.

These are just my own personal musings. I, of course, have no personal experience with these situations, but I grieve at the idea of restrictions that people might not be able to handle through no fault of their own.

I wonder if Representative Edward Markey (D – MA) and the Subcommittee on Energy and Environment are interested in hearing any of our thoughts on this matter while they re-think the policy.

Dear Imprudence: Don’t Talk About Us, Talk With Us

A recent Dear Abby had a question from an employer with a disabled staffer who wants the staffer to feel comfortable at work:

Dear Abby: I run a successful restaurant business. One of my key employees, “Zayne,” has Tourette’s syndrome. He has been a loyal and valuable waiter for many years.

When customers ask what is wrong with him because he makes noises or hits himself, how should I respond? Most of our regular customers understand his condition and ignore it. However, we do get the occasional socially inept customer who gawks or asks rude questions.

I would defend and protect Zayne. He knows people ask about him, and if they question him, he tells them about his condition. What’s the best way to respond politely to people who don’t have a clue? —Zayne’s Boss in the Pacific Northwest

Abby nailed it in her response:

Dear Boss: If you are asked about Zayne, tell the questioner, “That’s Zayne. He has been a valued employee here for many years. If you want an answer to your question, ask him.”

I liked her response for several reasons. The first was that it’s extremely common for people to talk about (and speculate about) people with disabilities instead of just approaching them directly. It would be nice if we lived in a world where people didn’t feel it was entirely appropriate to ask questions about someone with a disability, but at the very least, if people feel compelled to ask those questions anyway, they should be asking the disabled person, not someone else. And they should be prepared for a response that isn’t necessarily polite, either. If people say ‘oh but I’m too shy to ask directly’ then one might reasonably ask why they think the question needs to be asked at all.

I also like that although she didn’t explicitly spell it out, the framing of her response very much put the kibosh on the ‘defend and protect’ idea put forward in the letter. We don’t need to be ‘defended and protected.’ We need to live in a world where we aren’t objects of curiosity and speculation. Since we don’t live in that world, asking people to interact directly with us instead of around us is a good first step.

‘Defending’ us doesn’t address the social attitudes behind disability speculation. It reduces the problem to a personal one, rather than a larger structural issue; the problem isn’t that one person with disabilities attracts curiosity, it is that members of society as a whole think it’s appropriate to query the people who work with/around a disabled person about that person’s disabilities and that these same people won’t interact directly with the person they are asking about.

The critical thing she left out: She could have suggested that Zayne’s Boss ask Zane how he would prefer to have these situations dealt with.


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.

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