Daily Archives: 19 October, 2009

What does it mean to heal?

Perhaps this is the wrong question. Instead, I propose: What is there to heal?

Healing is the process of a body, having been injured in some way, doing what it takes to restore itself to normalcy. Merriam-Webster says, specifically, “to make sound or whole” and “to restore to original purity or integrity.”

Take note of the words I have highlighted. What are they saying?

This cultural idea of healing, applied to a person’s spirit rather than body, draws upon the idea of an abnormal body being made “normal.” It assumes that any person not normal should be made normal.

But there are all sorts of bodies in this world. Bodies with broken bones, broken skin, disfigured limbs, faces, with cuts and gashes and wounds, missing limbs, missing organs, organs which work in abnormal ways — according to our cultural norms.

And, much the same, there are all sorts of people in this world. People who have survived assault and abuse, been subject to violence, faced trauma, been manipulated or neglected, dealt with addictions, lost loved ones. People who have experienced any number of things which cause them significant distress.

These people are expected to “heal” from their experience. They go through a modest amount of time processing the event emotionally and then return to normal.

But why should they be made normal?

Why should any broken person be pushed and pressured into a form which does not fit?

Why is it that a person who is anything other than normal is therefore less than whole?

Why can’t a person simply be who they are, even if they are injured or broken or disfigured, and still be considered a whole person?

Any person who has faced trauma will need to find ways to process their trauma, ways to cope, ways to live with what has changed in their life. But that person should not have to push hirself to go back to how things once were — or to make things resemble what they are for a person who has not faced that trauma. Things may be different. There is not only one way to live a life. There are many. And perhaps you will settle into a different one — one which works better for who you are now — which may not have worked for who you were before. And that way is no less right.

What do you do when life changes? You adapt. You make things fit you. You don’t make you fit everything else.

It’s ok to be broken. Being broken does not make you less than whole. It makes you different. And that’s ok.

From the Comments

I wanted to take a bit of time to highlight some awesome comments that you may have missed on last week’s posts. I originally intended to go through all the posts last week and pull up interesting comment discussions, but so much interesting comment discussion has gone down that I’m just going to highlight a few from the earliest part of the week.

In response to our introductory post Welcome to FWD/Forward, Rosa started a conversation about the different ways that disability is talked about in North America vs the United Kingdom:

You use the term someone “with” a disability, I don’t know if this is different in the US but in the UK the disability movement have rejected this term in favour of a “disabled” person. The reasoning behind this is the social model of disabilities understanding that someone is not “disabled” by their impairment but rather by societies reaction to that impairment – thus they do not “have” a disability but are “disabled” by society and the goal is to remove those disabling barriers. So I just wondered what the reasoning behind your use of “with” is?

Chally, Amanadaw, and Oyuang Dan discuss that point in response.

In response to Annaham’s post Defining Disability, Rachel asked about temporarily able-bodied:

I hope this is not an inappropriate question, as I am still learning about these issues, but I wondered about the part of the definition above in which “Disability, additionally, is a term that refers to a long-term or lifelong condition.” Given the preference for “temporarily able-bodied” as the descriptor for those who are currently without disability, can people not be temporarily disabled as well?

Amandaw responded to that in the comments.

In response to abbyjean’s How Do We Understand This Experience?, many commenters responded with their own understanding of their disability, including this from Meg Thornton:

Part of me knows it’s all neurotransmitters and chemicals in the brain. But then again, so is sight, hearing and everything else which makes up the complexity of life. So I’ll keep thinking of Charlie trying for his commission when I get those little thoughts which say “don’t forget, you could always kill yourself” in the middle of things now and then, since it’s easier to just tell Charlie I’m not interested than it is to try and decode all the complex thought patterns which got me to where I am.

Really, all the comments on that post are great.

The comments in Lauredhel’s post Telegram to TABS on Spoon Theory get into another interesting discussion about language, both inclusive and exclusive. A.W. wrote:

For language and spoon theory, I do and don’t have a problem with tab. It fits very, very well for the judging of actions and the conservation of resources when dealing with bodily illness/pain. But deciding on actions and juggling resources also fit for severe depression and other mental illnesses, say, ptsd. (which I’m tempted to post about, but not sure it would go anywhere. Managing triggers (and how much of them you can reliably handle) is a pain in the ass). It’s over and under and – through -, and you can’t get away from it. For me the doling out of spoons when dealing with my mind is incredibly similar to when I’m dealing with body problems. An able mind is just as important. And no, lack of sleep from a kid at 2 am for the third night in a row isn’t the same dynamic. I’ve dealt with those things too, it isn’t even remotely the similar. Perhaps dropping the body bit and shortening it to ‘temporarily able’ would work.

Thank you so much to everyone who’s been participating in the comment threads, giving us feedback, and discussing ideas they’ve developed around or related to our posts. My schedule is such that it’s hard to keep up with comments as they’re happening, but it was great going back through earlier posts and seeing what people had been saying!

Ableist Word Profile: You’re so OCD!

Welcome to Ableist Word Profile, a (probably intermittent) series in which staffers will profile various ableist words, talk about how they are used, and talk about how to stop using them. Ableism is not feminism, so it’s important to talk about how to eradicate ableist language from our vocabularies. This post is marked 101, which means that the comments section is open to 101 questions and discussion. Please note that this post contains ableist language used for the purpose of discussion and criticism; you can get an idea from the title of the kind of ableist language which is going to be included in the discussion, and if that type of language is upsetting or triggering for you, you may want to skip this post.

Someone walks into my kitchen for the first time looking for something they will more than likely find the cupboards nicely arranged.  I like things with the labels facing out, neatly lined up, dressed to the front.  I like to have like items together (my cooking items are in a separate area from my baking items, and snacks, to begin to scratch the surface) to make it easier to find things.  Our Korean apartment is smaller than we are used to in some areas, so being organized is a must when it comes to storage.  We have Tupperware canisters lining the counter tops with frequent used and bulk items in easy reach, and also in the fridge w/ the produce already prepped.  When we bring meat home from the market we divide it into portions and vacuum seal it before storing it.  Some of this is for space sake, some of it is because I like to cook and will use spoons I sometimes steal from elsewhere to do so, and having the kitchen arranged as such makes that easier.  I have had more than one guest wander through the kitchen chuckling and mention to me how OCD it is (which really doesn’t make sense if you think about the acronym).

No.  My kitchen is clean.  It is neat.  It is sometimes meticulous (when the dishes are done), it is user friendly, well organized, color coded, over-the-top arranged, even.  My aunt would say you could eat off of my floors (some days, but we do have a seven year old).

OCD, or Obsessive Compulsive Disorder, isn’t just the tendency to keep things all tidy like Mary Poppins on a sugar rush.  It doesn’t mean that you like your clothes hung in chromatic order or your socks folded a certain way, or even that you sort your M&M’s into color groups before eating them.  It isn’t your friend with her dust free home or Bree VanDeKamp hair or Emily Gilmore six-inch tapers.

It does mean that you tend to have thoughts (obsessions) that intrude into your mind and make you extremely uncomfortable, because you know that they are unreasonable.  Some people have thoughts where they hurt themselves or their loved ones.  When I was much younger I once had repeated visions of shoving a corkscrew into my eye while at the bar where I was working.  Understandably it was bothersome, and actually there were times that it worried me to tears, because I knew I wasn’t going to shove a corkscrew into my eye, and I couldn’t figure out why my brain was giving me that picture.  People often engage in repetitive actions (compulsions) to alleviate the stress of these thoughts.  I wiped bar glasses and liquor bottles until they were spotless, and later at home plucked my eyebrows into oblivion because they were never quite symmetrical.  I brushed my teeth until my gums bled…anything to keep my mind off of that fucking corkscrew.  In your mind you know that having washed your hands or brushed your teeth fifteen times before school has probably already taken care of any germs (and skin or enamel), but you can’t get the thoughts of those germs gone.  So you brush, or you wash.  And you still think your hands are covered in bacteria or you can feel your teeth rotting in your head (even though you know it isn’t true).  So you wash again…and you miss that first class…even though you know better.

It overcomes your life.  OCD isn’t just some cute little habit you have of always placing everything on your desk perpendicularly or always lining shoes by the door. It actually interferes with your life and how you are able to live it.

When I was in college I knew that I wasn’t going to blow up my apartment.  My rational mind was well aware of that fact, even though I could see the building on fire and me standing outside of it.  But after cooking, when I had to leave for class, I had to go over to the gas stove and turn all of the dials on to make sure I had turned them off…even if I hadn’t used them.  The oven too.  I just couldn’t stand the thought of leaving the gas on and having something happen to my roommate while she slept.  Then I would grab my bag…and even though I knew I had just. checked. the. damned. knobs.  I had to go back and check them again.  After this I might get out the door and lock it, but then I’d have to go back in and check again.  The next time I might make it all the way down to the main door of the building.  “What if you missed one?  You could blow up the whole building!”.  Back up three flights of stairs, unlock the door, and check the knobs again.  Of course they were fine, just like the last three fucking times I checked.  That didn’t stop me from having to go back two more times, once after thawing my car, and once after I had actually left the parking lot, made an illegal U-turn, and gone back.  I kept seeing the whole building go up like a giant bonfire on a July evening in Michigan.

I was two hours late for class.

I was obsessed with numbers.  If I had pieces of something I couldn’t eat it unless it could be divided into odd-numbered groups of odd numbers.  My weight became an obsession, which isn’t at all uncommon in people with OCD, and no matter how much I lost I was certain that I was disgusting and fat and gross to everyone who saw me.  I actually measured “ins” and “out”, and I will leave you to those pleasant details all on your own.

Years of therapy later I am able to find myself in a place where I can control my OCD, and I have come a long way in managing it.  This isn’t true for everyone, because each of us are unique and what worked for me isn’t going to work for the next person.  I am by no means “cured”, but there is something to be said for being in a stable home environment for the first time in my whole life that has turned the corner for me.  There are things that will cause me to slip…

Some other fun facts about OCD.

There are some lesser known offshoots, such as Trichotillomania and Dermatillomania.  These conditions begin with the same intrusive thoughts, but instead manifest with compulsive hair pulling and skin picking.  I have both of these conditions.  The hair pulling left me with little to no eyebrows, and an embarrassing bald spot on the back of my head that covered nicely with a military style bun.  Without babbling on as I am wont to do, it was another thing I had to work through with a mental health professional (and one awesome esthetician).  The skin picking is still a challenge, and as stress in my life heightens so does that.  This is the most embarrassing of my anxiety issues because this leaves the most obvious marks on my face.  My arms I can hide with long sleeves.  Even though I am incredibly aware of the marking and scarring left, most people don’t notice it, unless they are very close to me, and even then most don’t unless I am comfortable enough around them that they have actually seen me doing said picking.

So, I believe we can see why the usage of OCD is ableist here: it isn’t some funny quirk.  You are trying to be witty.  I get that.  But your witty words mean things about my life, parts of my life that I have worked to overcome, and which people I know are still living with daily and that just isn’t funny.  It isn’t something we close up in a cupboard and laugh about with friends*.  It is a daily struggle for people who absolutely know that they are doing things that are unreasonable to help them cope with the anxiety of things that they also know are unreasonable.  We slog through it, grind it down over years, beat it back, and work our asses off to gain chunks and pieces of our lives back from it.  That is no joke to us.  It is extremely ableist for a person who is in control of their thoughts and actions to appropriate this term to mean that someone is really particular about the way they like things.

So, no, your very tidy friend is not OC.  Unless sie is.  And then, ha ha, sie probably doesn’t appreciate having hir life poked at.

*OK, you got me.  Sometimes we do.  But that is our right, not yours.

Television: Bloody Torchwood

This post is part of a series about representations of disability in movies, television shows, and books. They contain spoilers.

[Originally published as part of Blog Against Disablism Day, May 2009]

Blogging Against Disablism Day, May 1st 2009If you haven’t seen Torchwood, I’m not entirely sure how to describe it. It’s a Doctor Who spinoff where Captain Jack Harkness and his band of misfits battle to keep the Earth safe from aliens arriving in Cardiff, Wales. There is a Rift in Time and Space that is the Plot Device when needed – aliens pop out of it and, sometimes, people get sucked into it.

It’s also a show where sex and flirtation are part of the plot. Episodes have revolved entirely around sex, such as the one with “sex pollen”, but sexuality, flirtations, and explicit sexual relationships – both same sex and opposite sex – have all been main or side plots. One throw-away line that’s often quoted ’round the fandom is recurring guest star (and ex-lover of Jack’s) Captain John Hart’s comments about how attractive he finds a poodle.

But of course no one in Torchwood would ever flirt with someone with a disability. They’ve never had the chance – no one with a visible disability has ever been on the show.

Oh wait! I tell a lie! Of course someone who has a disability and is deformed has been on the show! I totally forgot. Let me tell you about it.

In Adrift, an episode in late Season 2, Gwen Cooper realises that several people have gone missing in Cardiff, and slowly starts to piece together that they’ve been “taken by the Rift”. The episode focuses on the story of one mother, Nikki Bevan, whose son had gone missing seven months earlier. It shows her grief, and her obsession with finding out what happened to her son. She’s loving and emotionally invested in the search, in contrast to the growing hardness of viewer-standin Gwen.

I’ll skip a lot of summary, which you can read at Wikipedia should you wish.
Continue reading Television: Bloody Torchwood

Barriers to justice when rapists attack women with disabilities: Australian report

[This post was originally published on October 3, 2008 at Hoyden About Town.]

*trigger warnings apply to this post: descriptions of abuse and sexual assault against women with disabilities**

“This young woman [“Caroline”] has cerebral palsy, is wheelchair bound, totally dependent on carers for her personal and daily living activities, and non-verbal. Cognitively very aware, she depends on assisted communication to enable her to communicate … Caroline was sexually assaulted by the taxi driver who picked her up from home and drove her to school …

Caroline uses a communication book to communicate, but her communication book did not have the vocabulary she needed to describe what had happened to her. Her communication book did not include words such as “penis” or “rape”, and police would not allow these words to be added after the incident, because as the police explained, in court this would be seen as leading the witness. (Excerpt from an interview with a support worker cited in Federation of Community Legal Centres, 2006, pp. 7–8).”

Suellen Murray and Anastasia Powell of the Australian Centre for the Study of Sexual Assault have just released a new report: “Sexual assault and adults with a disability enabling recognition, disclosure and a just response” [PDF].

This report starts to fill a huge gap in our knowledge of sexual violence in Australia. Although data in North America has shown that women with disabilities (WWD) are far more likely to experience sexual violence than those without, up until now there has been little or no systematic research into what is happening with WWD in Australia:

Despite being the major national data collection regarding the status and experiences of adults with a disability, the ABS Survey of Disability, Ageing and Carers, does not invite participants to report on their experiences of violence or abuse.

Similarly, the ABS (2006) Personal Safety Survey report, which specifically investigates experiences of violence, does not identify the disability status of participants, and the International Violence Against Women Survey (IVAWS) specifically excluded women with an illness or disability from the sample for the survey (Mouzos & Makkai, 2004).

Therefore, despite evidence that approximately 20% of Australian women, and 6% of men, will experience sexual violence in their lifetime (ABS, 2006), there is no standard national data collection that includes the experiences of sexual violence amongst adults with a disability, or more specifically, the experiences of women with a disability.

There is one smallish South Australian study showing that adults with intellectual disabilities are over ten times more likely to have been sexually assaulted.

Continue reading Barriers to justice when rapists attack women with disabilities: Australian report

Recommended Reading for October 19, 2009

In the Blogs:

Them and Us

A lot of people have caught on that they need to provide access for the disabled when they build something, but apparently access is only needed for Them.

You know, Them. There’s Them, and then there’s Us. They might be disabled, but We aren’t, and never will be.

Accessible restroom? Oh, no, because the restroom is only for employees, and none of our employees is disabled (or ever will be).

Elevator to the second floor? Oh, no, because the public doesn’t need to go to the second floor, and nobody who works there is disabled (or ever will be).

Access to the stage? Oh, no. There’s access for the audience (Them), but the actors and singers and stagehands (Us) aren’t disabled (and never will be).

[This really resonates with me, especially after Campaign School this weekend. Although they did address issues of making accessible campaign literature and ensuring your office was accessible, everything was spoken of as though no one with a disability would be part of a campaign, either as a volunteer, employee, or candidate. Them, and Us.]

Marginalized folks shouldn’t always have to be “the bigger persons”

But, you know, it’s not just people of color who are constantly expected to show extraordinary compassion when faced with bias. It is women, gays, lesbians and the transgendered. It is the disabled, the obese, immigrants and the poor. Ask any marginalized person and it is a safe bet that they have been told “have a sense a humor,” “don’t be so PC,” “that’s just how so-and-so was raised,” “here’s a great teaching moment, “you have to understand some people won’t be comfortable with x, y, z,” “he didn’t really mean it.”

Via Unusual Music: College Mental Health: A Different Diagnosis:

Students interviewed for this story reported that mental health seems like a low priority on campus. Alexa at New York’s Westchester Community College notes, “Mental health seems to be something that people really keep to themselves.” She describes her community college’s scarce resources as consisting of one social worker and a two-by-three inch bulletin board in the upstairs of the student center. “I only realized it was there while waiting for three hours in the hallway to register for classes.”

Access to services — such as individual and group therapy, consultation and referrals, support groups, medication monitoring and crisis hotlines — varies from school to school. However, most college campuses would benefit from improvement and expansion of their mental health facilities and services. Students are generally granted a few free counseling sessions, but due to increasing financial restrictions, the number of sessions can be scant — as few as five visits per student.

At two of my previous universities, you were limited to less than 10 sessions over a year. I believe my current one has unlimited sessions, but you must call the office between 9:00 a.m. and 9:15 a.m. for a same-day appointment. There is no booking in advance.

In Our Own Words: Fighting for our DLA [UK] [Older post] [DLA = Disability Living Allowance]

DLA was established, after years of research, because the costs of living as a disabled person in a barrier-filled world organized by and for non-disabled people were considered to be so high. The estimated costs of disability that came out of this research were far, far higher than what is actually now given to DLA claimants. It was also emphasised that DLA should not be means-tested, because the costs of disability are high whether a person is extremely poor or generally has enough to live on.

Also, FrolicNaked did three posts about NPR’s American health care discussion. Post 1, Post 2, Post 3.

My new favourite website: Wave: Web Accessibility Evaluation Tool. How does your website measure up?

“But what do we CAAAALL them?”: The language of shackling

[This has been cross-posted at Hoyden About Town.]

I don’t know who David Southwell is when he’s at home, but he’s showing his arse big-time over at his “Sub in the Pub” blog at news.com.au, a large Australia news organisation that is part of News Limited (Rupert Murdoch).

Following up on the story about the man abandoned to cool his heels on Mount Snowdon, Southwell agonises about the “Language of disability“. He mentions that someone in comments requested that journalists stop using the term “wheelchair bound” – a simple and common request any experienced writer should be well aware of. (Read more at Accessibility NZ if you’re unaware of this issue.)

But Southwell seems to decide that this is all a bit scary and difficult to understand, and drops this:

While avoiding pejorative terms is certainly desirable, I also think euphemisms such as “differently-abled” aren’t that helpful and open the whole subject to ridicule.

However if we (I mean the cliche-recyclers) take on board Paul’s point, a better term would be “wheelchair-restricted”?

Fwooooosh!

He’s completely missed the point. He’s very, very stuck in this idea that only terms referring to restriction and binding could possibly be appropriate when referring to a person with a disability. His go-to idea is one of passivity, of shackling. And when he’s told that one term is problematic, he just – looks for a synonym with the same problem, instead of addressing the problem itself.

In comments, I reply simply:

You don’t need to use terms relating to binding or restriction at all. “Person who uses a wheelchair”. “Wheelchair user” for short.

And I figured that would be the end of it. A wheelchair is a tool. A PWD with certain mobility deficits may use one to get around. The term is non-pejorative and descriptive. What’s to argue?

But no, apparently it’s not that simple in the mind of someone whose mind relentlessly associates “disability” with negative ideas. He comes back:

I might go with this, although I think it suggests there is a choice involved and it almost sounds recreational.

Unfortunately in journalese, “user” normally follows after “drug”.

What?

“Wheelchair user” no more connotes a recreational choice than “hammer user” or “computer user” does. You need to bang in a nail, you don’t happen to have a large iron hand, so you use a hammer to achieve your goal. You want to send an email, you don’t happen to have a computer chip and meatwires installed, so you use a computer to achieve your goal. You need to get around, you don’t happen to have legs that hold you up and propel you (or you have other issues like orthostatic hypotension, etc), so you use a wheelchair to achieve your goal. Why is this so difficult for some people to grok?

And why on earth, seeing the term “wheelchair user”, does someone feel the need to leap to the idea of drug abuse?

My reply:

David, your own news organisation uses “user” far more often to talk about people who use software, computers, and gadgets than to talk about drug users. There are also quite a few hits on “wheelchair user” on a news.com.au search, and no one seems to have panicked yet about your particular, and frankly rather bizarre, concern.

You don’t need to hair-tear publicly about this. Just look up a style guide. There are plenty; your own org probably has one. Here’s one option dealing specifically with disability [RTF download].

Have you had this conversation recently? Did your interlocutor(s) fail to understand the difference between tool use and restriction, hindrance, and hobbling? What’s your journalistic bugbear when it comes to reporting about people with disabilities?