Tag Archives: work

Recommended Reading for November 16

Just by luck of the draw, today is all news all the time.

Autism is not a dirty word

“They have one line and they just repeat one line. It is a very bizarre sense of autism.” Pierre Lellouche, the French minister for Europe, made headlines with his attack on the British Conservative party’s attitude to the EU. For us Guardian readers, sympathy with Lellouche’s frustration in his dealings with Hague and Cameron will be overshadowed by annoyance, even outrage, at his pejorative use of the word “autism”.

Wikipedia tells us that autism is “characterised by widespread abnormalities of social interactions and communication, as well as severely restricted interests and highly repetitive behaviour”. Doesn’t that describe the Tories in Europe to a T? We all know what Lellouche meant. He wasn’t trying to give a diagnostic definition; shouldn’t we accept his choice of words – as his spokesman has pleaded we should, since “President Sarkozy is called autistic every day” – simply as a colourful way of making a point?

Mind Your Language: Words can cause terrible damage [And, again – I disagree with the idea that calling people names based on disability is the last acceptable taboo and that people are always punished socially for using racist slurs, and never punished socially for using ableist slurs. This isn’t a zero-sum game – we’re not somehow getting less abuse if we acknowledge that other people are getting abused, too. However, I think there’s a lot of good in the article.]

So why is it acceptable against people with disabilities? When did they become such a forgotten minority that they ceased to matter in the battle against bigotry? A group so exiled still from mainstream society that it has become acceptable to fling around hateful words such as “retard” and “spazz” without a murmur of disquiet. Not just in the playground, where these words and many more like them are commonplace, but online, in the office, in the home and in Hollywood.

Employers anxious about hiring people with disabilities, but see their value

More than 100 human resource executives from a cross-section of Ontario-based firms took part in the study commissioned by the Job Opportunity Information Network. JOIN helps individuals with disabilities to find and maintain employment, and assists employers in recruiting candidates.

Among respondents, 36 per cent say they were discouraged from hiring a person with a disability out of concern that it would be harder to dismiss a person with a disability than someone without one.

Family: Gym Took Advantage Of Man With Disability

The brothers of an Indianapolis man claim a local gym took advantage of their developmentally disabled sibling, signing him up for a contract that he couldn’t understand.

Mark Hannon is 49, but functions at a much younger age, the family told 6News’ Rafael Sanchez.

That’s why they were upset when Hannon told them that two men representing Bally’s Total Fitness came to his door last week, offering to sign him up for a gym membership.

Harvi Carel: My 10 year death sentence

“So, how long have you got?” The first time I was asked this question, I was dumbstruck. The horror of it, and the casualness with which it was asked, was too incongruous for words. Was it simply curiosity? Ignorance? A clumsy attempt to “connect” with me? What else could motivate someone to ask such a horrific question? Yet, it’s a question I have been asked again and again – by friends, acquaintances, even strangers who have seen me sitting in a café with an oxygen cylinder beside my feet.

Once you are ill, I realise, you become fair game. You slide down an implicit social ladder. Others begin to perceive you as weak and unimportant, an object of pity and fascination. In asking: “How long have you got,” they compress all their horror, anxiety, pity, and relief that this is someone else’s story. How else to explain how people find the obtuseness and cruelty to ask you – in so many words – “When are you going to die?”

Recommended Reading for October 29

Sexy with a Disability:

It’s not like there are many role models out there in the media. The disabled are rarely portrayed as sexy. Brave, yes. Melancholy, sure. Angry about their lot, check. Objects of concern and pity (stop calling me “special”!). But sexy? No. The hot babe who gets the guy isn’t limping toward him, gnarled fingers grasping his strong shoulders as they kiss. And if she is in a wheelchair, it is only temporary.

Ally Issues: Feeling Useless:

At the same time, I have this nasty prickly little feeling inside me which tells me, “what right do you have to write about this issue? You’re perfectly able-bodied. You’re so able-bodied you’ve been holding write-ins at the Paperchase Cafe for years. It’s not like you’ve ever done anything to be a good ally to people with disabilities.”

The horrible thing is that the voice is right.

I’m wondering though, if it would be worse if I let the voice hold me back. That I have to wonder is, I think, pretty bad. Able-bodied people can talk about disability issues, and do, all the time. I’ll probably fuck up at some point, but that happens, right?

A piece of ableist language I could really do without

It’s that dreaded question, upon meeting: So, what do you do for a living?

It hurts. And what’s worse, people often don’t stop there; they keep on asking. ‘Oh, you don’t work? Why not? So are you on the dole then? Are you looking for work? But how do you afford to live? A pension? What are you on a pension for?”

Honestly, sometimes I just want to tattoo it on my forehead: “Hi, I’m Cinnamon Girl, and I’m insane. Thanks for the tax dollars!”

You see, I have a psychiatric disorder, and receive a disability support pension as a result. I don’t work to make my living. I also don’t want to disclose to every last person I meet that I have a mental illness. But, with that loaded innocent question, that’s pretty much what I’m forced to do.

Bones and Invisible Disability:

To be clear, Brennan’s Asperger’s is never directly mentioned by her co-workers. Her social awkwardness, typical of the syndrome, is frequently the punchline of jokes or leads to the repetition of one of Brennan’s favorite phrases, “I don’t know what that means.” However in interviews, Emily Deschanel, the talented actress who plays Brennan, often states that her character does have a mild form of Asperger’s.

The lack of awareness Brennan’s co-workers show about her Asperger’s, leads me to believe it could be considered an invisible disability. At first glance, Brennan appears “normal” and the only way her co-workers would know about her Asperger’s is if she tells them and then proceeds to advocate for her unique needs. In fact, she has made steps towards self-advocation already, at one point last season asking her psychologist, Dr. Lance Sweets, to help her understand social cues and to read facial expressions.

Dealing with disability is fine – it’s the phonecalls that shit me!

Peopel who don’t know you gasp and think life must be unbearably dificult, draining, and emotionally tough when you have a child with a disability – but to be honest, it’s the endless phonecalls, wrangling and organisation that can shit me to tears. Picking up Miz M from childcare yesterday, where she beamed delightedly and kicked her little legs and waved her arms, that was lovely. Trying to help her eat slices of mango was sticky but, hey, just fine. Making the fourth phonecall to the same organisation to try to organise for her mobility device to be fixed, on the other hand, brought a hot flush of frustration to my face and tears of irritation to my eyes. Put on hold while the woman I needed to speak to was on another call, after which the original unhelpful phone-answerer got back to me and said oh, she’s left now, and won’t be back till tomorrow. This, at 9 am.

Yes, it DOES make a difference

(Cross-posted at three rivers fog.)

I wrote this yesterday in an extreme fog and do not have the spoons to rework and polish it. Apologies for the brainspill, but these days it’s the only option I have.

***

For background, see Ouyang Dan’s post on the problematic aspects of the TV show House. Don’t tell me that people realize this is fictional. Don’t tell me that people know how to maintain that separation. Some do. Many don’t. And they’re everywhere. At the bottom of the totem pole… and in positions of power over the very people they are prejudiced against.

***

I was called back to work two weeks ago. I work at a government office that provides certain assistance programs. (Once you go to work for one government agency, you realize there are a whole lot more of them than you ever thought before.) I really don’t want to go into it any more specifically than that.

It’s been very rough on me. Last winter, work was physically draining. I basically have two whole hours every day that I am awake and not at work, preparing for work, or traveling to and from work, and semi-conscious. Not only am I so physically exhausted that I go to bed three hours after work ends, I am so physically exhausted that my brain just cannot be pushed any further. I have trouble comprehending the blogs and news sites I normally read; writing is usually out of the question. Of course, we won’t even talk about anything more physical than that — even preparing a boxed dinner for myself is too difficult. My apartment is even more a mess than usual, because I don’t have the energy to pick up the clothes that I shed as soon as I get the front door shut, the mail and personal items that trail after me from the couch to the bedroom…

Unfortunately, so far this year, it hasn’t just been physically draining. I’ve been dealing with a sudden onset of severe migraines, and not the type of migraines I’ve had since childhood and have an intimate knowledge of — these are more classic migraines, the nausea, the aura and vision distortion, the intense pain and pressure behind the eyes… The pain is not as overwhelming as my normal migraines (where a twitch of the toe makes me want to scream or cry or at least moan, but the movement and force of emitting any noise at all would hurt even worse, so I just curl up and remain frozen in misery), but the experience is just as miserable because it block’s my brain’s ability to function, even to process the smallest of information. I’ve been having trouble writing six-digit numbers on the top of each application. And normally I work faster than the worker next to me, but the past two weeks she’s been cranking out work three times faster than me.

It’s frustrating. I’ve been doing everything in my capacity to do to fight these headaches off. Everything. And no, I don’t want any helpful suggestions. But regardless, even with all the desperate measures I have been taking, they persist.

On top of it all, my endometriosis has decided to flare up at the same time. So I get double nausea, extreme abdominal cramps, persistent pelvic pain and other symptoms.

I’ve been in a lot of pain.

I take a lot of medications. For pain. I take medications that have no effect on people who do not have a specific type of pain disorder. And I take medications that people who are not in pain popularly take to get high. (I do not, for the record, take anything to get high myself.) And I put up with a lot of shit to continue taking one of few medications that works and that enables me to work.

(I guess I could give it up and therefore be putting up with less shit. But then I’d, you know, not be able to work. And for so long as I have the option to be able to work, I’m taking it. Because I may not even have that option forever. Situations change, bodies change, and bodies change how they react to medications over time. I’m doing what is necessary for myself and my family at this point in our lives.)

So, at work today.

I sit on the far side of the first floor of our building, along with all the other people working in my particular program, the people working on another program, and a couple stray general clerks across from all of us. The other program’s supervisor and one of the other program’s workers (OPS/OPW hereafter) were talking about a certain case, a woman who was being denied medication and needed help obtaining it. This was before lunch, it was a general talk in a work context, that is how to get the problem solved.

My husband and I went home for lunch, as we do regularly, given that we live less than five minutes from our workplace. It takes half the lunch period but it is worth the spoons because it makes the workday so much more bearable — two four-hour chunks rather than one long nine-hour one. We sit around, watch The People’s Court reruns, eat our lunch and laugh at the cats who get in silly, hyper, meddling moods around that time.

I returned from lunch, feeling a lot better having had a break from the fluorescent lighting and ambient noise of the HVAC system. And a few minutes after I got back, sitting next to the OPS scanning documents into the computer system, OPW wandered back over and began talking again about the client from before.

The medication? Oxycontin. Her doctor has been prescribing it to her for over 15 years.

And the conversation? Went like this. (As typed soon after in an email to my husband, as close as I could get to what they actually said, given how stunned and hurt I was while it was happening.)

OPW: do you watch house?
OPS: no not really
OPW: well he has some sort of leg injury, but he takes that other one, what is it? vicodin
OPS: uh huh
OPW: and they sent him to rehab, and he just had to find something to occupy his mind so he wouldn’t think about it
OPS: yeah they get addicted so easy
OPW: and now they put him on regular pain killers and he’s doing just fine
OPS: yeah a lot of the time tylenol or advil works just as well, people just want the high
OPW: exactly, and their doctors prescribe it to them and they hand it out to family members…

And the conversation went on like this for a couple minutes, with the two of them walking back and forth fetching printed documents, attending to the scanning etc.

I just… I’m not terribly private about my condition. I don’t bring it up, but if it’s relevant I talk about it. I do try to avoid telling my coworkers that I take narcotic medications (as opposed to just “medications”) but I have gone over it specifically with HR as it can be a security issue in some agencies.

I was sitting right there. OPW sits on the other side of me, and had to walk around me to get to where OPS was at the scanner. I was sitting right there.

They were talking about me.

They weren’t thinking of me, of course. They’d never make that connection. I’m young and thin and pretty enough. They know I work hard. Most of my office loves the hell out of me.

But if I had spoken up — rather than sitting there holding my breath trying not to cry — how would that opinion change? Would they start seeing me as lazy, as slacking off? Would they whisper about me every time I went to the water fountain for a drink? What was I taking? What was I doing with it? Would they start taking certain behaviors as symptomatic of addiction? If I passed too well one day, appearing to be just fine (to them; I am good at covering up my pain) — would they take that as evidence that I couldn’t actually be in pain and couldn’t really need that medication? And if I didn’t pass well one day — especially these days, when I’ve been stopped more than one time as someone remarks on how deathly pale I am and asks if I’m OK and tells me to take a break — would they see that resulting, not from my pain, but from the supposed addiction?

They were talking about me. They didn’t even know it. But I am that person on that medication. Pushing through the pain to keep working.

The difference is, Dr. House is a character.

I’m real.

And that woman. These were the attitudes of the people who were helping her resolve an issue. As much as I wish otherwise, workers do have some degree of latitude in deciding how they are going to approach a case, and can apply the law in different ways for different people, even if it appears pretty strict on paper.

I am that woman.

I have been there. I am there. I have to deal with unsympathetic figures in obtaining my treatment. Doctors, nurses, office staff, pharmacists, insurance reps, welfare reps, other reps. I have issues I have to call to have resolved. I have that person on the other line who’s promising me on the one hand to resolve the issue — but on the other hand …? How can I ever know?

I don’t know what was going on in this woman’s life. I don’t know if she’s dependent (there is a difference). I don’t know if she would be better off on another course of therapy. Or whether she’s tried all those other courses and they’ve given her awful side effects or they’re contraindicated given her particular condition or they’re unavailable to her due to income or access. I don’t know.

Maybe she’s abusing. Maybe she’s handing it out on the street corner.

Maybe she’s just like me. Just one person trying to power through this world as best she can. And this is the best way she’s found to do it.

Recommended Reading for October 12, 2009

Blogs:

The Invisible Crutch:

I’ve decided to build an invisible crutch from things that constitute abled privilege, without repeating too much of what is in McIntosh’s list (so read her list, and substitute “disability” for “color” for many of those things).

1. I can, if I wish, arrange to attend social events without worrying if they are accessible to me.

2. If I am in the company of people that make me uncomfortable, I can easily choose to move elsewhere.

This month’s Disability Blog Carnival will focus on Disability & Work:

Here are some suggested starting points: What work do you do? How’s that going? Do you get paid for it, or is it volunteer work or something you do because you just love it? What blocks you from employment? If you’re employed, what could be better? Do you want a paying job, or do you feel you contribute to society just fine without one? What unpaid work do you do that you value or that others value, for example, emotional support in relationships? If you’re a family member, friend or ally of a person with a disability, what thoughts do you have on work and employment? What’s the employment situation like for PWD in your country or region ?

Health Care & Vulvodynia [U.S. specific]

One of my concerns about health care reform in the US is how it will impact sexual & reproductive health, the domain in which vulvodynia and other pelvic pain conditions are usually classified. As far rights directly related to reproduction and abortion in particular, it’s looking grim. My hope is that patients with pelvic pain conditions will be covered adequately as well. This may not seem like the most pressing issue, since, frequently, sexual health problems will not be directly responsible for death. There are some definite exceptions, notably AIDS, and cancers.

For a few moments, I feel guilty thinking about sexual health in light of other deadly, catastrophic illnesses…

But then I remember that it’s not fair to minimize the very real suffering & misunderstanding that I and other pelvic pain patients go through. And I remember how hard it is to convince others, including doctors, of how very real it is & how difficult it can be to get an effective level of care.

Fat Hatred and Disability on the Cleveland Show:

Sidewalks that are functional for an able bodied person are not necessarily useable to someone in a scooter. Poles that can be easily navigated when they are stuck in the pavement, are not necessarily easy to move around in a scooter. Often curbs are not turned down. Sidewalks are carelessly blocked off by cars hanging out of drive ways, and let’s not forget those who think that they don’t have to shovel their walkway in the winter. My personal favourite are those that believe the scooter rider should always yield when faced with a pedestrian on the sidewalk.

My Use of Ableist Language:

I can’t tell you how many times throughout my life that I have used the phrase “that’s lame” or “don’t be lame” in my life. It’s been a part of my vocabulary since grade school. I wasn’t really aware of the exclusionary and offensive nature of the word until college. That’s when I made the connection between the word “lame” and it’s association to people with mental disabilities.

In the news:

McDonald’s in row over mobility scooter [New Zealand]

McDonald’s is yet to deliver on a promise to say sorry to a woman who was denied service in a drive-thru, because she was on a mobility scooter.

Margaret Todd says she could not squeeze her scooter through the front door of McDonald’s in Blenheim, so had no option but to head round to the drive-thru.