Category Archives: social attitudes

The Largest Minority Round Table Discussion: Glee and Disability in Pop Culture

Last week s.e. smith and several other members of the disability community, including Alice Sheppard (a dancer with AXIS wheelchair dance company), TK Small (a lawyer and disability rights activist), Christine Bruno (who works with the advocacy group Alliance for Inclusion in the Arts), and Maysoon Zayidd (an actor and comedienne with Cerebral Palsy).

came together on the WBAI show The Largest Minority to discuss Glee and depictions of disability in popular culture. This particular episode of the radio show was inspired by s.e.’s post, A Very Glee Christmas.

You can download directly from their site: This is a direct download link to save-as. Alternately, you can play it on the WBAI site by going to their archives and scrolling down to Shared Timeslot Wednesday 10pm to 11pm on Wednesday, December 22, 2010 10:00 pm. Alternately, you can read the transcript.

The actual show itself doesn’t start until 3:52 in to the program slot.

It’s taken me a while to get the transcript of this done, for which I apologize. I did mean to get this up far faster than I did. I also should note that I had some difficulties always identifying who was speaking, and there are points in the program where the show’s audio cuts out terribly and I’m unsure what they’re saying.

Continue reading The Largest Minority Round Table Discussion: Glee and Disability in Pop Culture

We Are Not Your Props

Last week, the Internet exploded over the case of Jody McIntyre, a wheelchair user who was pulled out of his chair during a demonstration in Britain in front of a shocked crowd. I saw the Tweets rolling out live as the incident happened, with people demanding to know why the event wasn’t being covered on television; as usual, the coverage slanted towards focusing on ‘dangerous’ and ‘unruly’ protesters, as well as framing the people involved as ‘middle class’ with the goal of writing off the seriousness of the events and erasing the participation of people from the lower class who were up in arms as well.

From the corner of my eye, I spotted one of the policemen from the earlier incident. He recognised me immediately. Officer KF936 came charging towards me. Tipping the wheelchair to the side, he pushed me onto the concrete, before grabbing my arms and dragging me across the road. (McIntyre writes about his experiences)

The case caught attention as a result of being caught on video and went viral; within days, McIntyre had been interviewed by the BBC and mocked in The Daily Mail. This particular incident of police brutality started getting significant traction in discussions about the protests.

Much of the narrative surrounding this incident was righteous outrage. Seeing footage of a 20 year old man with cerebral palsy who uses a wheelchair for mobility being hauled out of it and being left to sprawl in the street sparked rage, and my Twitter feed exploded. It’s wrong, most people seemed to agree, for police to abuse ‘the disabled‘ when they are exercising their rights to peaceful protest. People also emphasised McIntyre’s ‘weakness‘ and ‘helplessness’ although I think he pretty amply demonstrated in his BBC interview that he is far from helpless:

Interviewer: And why then, do you think– Are you saying the police picked on your twice. Why do you think they did?

JM: I have no idea. I mean, to make one suggestion, I think in the second incident at least, I think there’s a clear element of trying to provoke protesters into violence. Personally, I see myself as equal to anyone else, but I do understand that I could be perceived as more vulnerable, so I think there was an element of trying to provoke violence from others.

Numerous incidents of police brutality were documented during the London protests, but this particular case got a lion’s share of the attention because it involved a disabled man. Another protester experienced a head injury so severe that it required surgery.

Which is a curious contrast from the way the left seems to regard other wheelchair users exercising their free speech and assembly rights. Every time there’s a significant conservative demonstration here in the United States, I see people using mobility devices being singled out for special mockery by the left. The liberal ableism starts flying when it comes to people with disabilities doing things the left doesn’t like and we are reminded that we are considered pawns when we express views the left does not like, and heroes when we’re expressing views the left does like.

It’s Tiny Tim season, so of course this case hit a number of sweet spots, as it were. McIntyre was an excellent choice ofcause celebre for nondisabled people angry about the police response to the protests because he was a symbol. An object. Dare I say it? A prop. McIntyre was ‘the disabled.’ It’s generally agreed that being mean to ‘the disabled’ is one of the worst things a person can do and unlike those pesky nondisabled protestors who were abused by police, there is, of course, no rational way he could have posed a threat to police, making his abuse at their hands ‘unjustifiable.’

I don’t know how else to say this because I feel like I have been saying it for years, and no one is listening:

We are not props. We are not symbols. We are not rhetorical devices. We are human beings. We have free will and bodily autonomy.

Every protester in London had a right to not be abused by police. Not just the disabled protester. And every person has a right to express views, no matter what they are, no matter who agrees with them, regardless of disability status. Patting us on the head when we fit with your agenda and then telling us we’re ‘clueless’ when we don’t is patronising, it is dehumanising, and it is wrong.

Jody McIntyre attended that protest in full awareness that police violence had been ongoing at the student protests and he took a calculated risk, knowing it was a possibility, just like every other protester. He’s not a hero or a rallying point because he was dragged out of his chair and hit by police while disabled: He’s a person who experienced police brutality. He pointed this out in his interview:

I would say that it’s very important not to see this as an isolated incident. This is the police’s role at demonstrations. To incite and provoke violence. They’ve done it in the past and they’re continuing to do it now. I am not the real victim here. The real victims are the students, like Alfie Meadows, who is in hospital within an inch of his life after a policeman struck him on the head with a truncheon and he needed emergency brain surgery. Now imagine if it was Prince Charles, or Camilla, or a police officer who had been within an inch of their life.

He attended that protest because he had something to say:

“[The police] are out of control,” he said. “I have just as much right as everyone else to protest. My 16-year-old brother now believes he will be unable to go to university because of the higher fees involved.” (‘Footage shows protester dragged from wheelchair‘)

Every time our disabilities are used to leverage pity and other emotions, it’s a reminder that people think of us as consumed and defined by our disabilities. If McIntyre hadn’t been in a chair, he would have gone down with scores of other nameless protesters who were abused by police. If his abuse hadn’t been caught on video, a handful of enraged Tweets would have been the sum total of the matter. Instead, people are trying to leverage him to make political points.

This case is rare; usually when we are used as pawns to advance agendas, we are not allowed to speak for ourselves. McIntyre has been interviewed and given a voice and an opportunity to push back on some of the narratives surrounding him, breaking out of the prop mold people want to shove him in. Most of us don’t have that chance.

I’ll leave you with this:

As a result of events on the 9th December I will be pursuing legal action against the police. But I do not because I see myself as a victim. The real victims are the likes of Alfie Meadows who was hospitalised as a result of his injuries. We need justice not only in my case but also in Alfie’s case and anyone else who’s suffered in this struggle.

While this condemned government continues to promote values of inequality and attempts to widen the gap between rich and poor, I will speak up for those who do not have a voice. (‘Who’s apathetic now?‘)

New book: Living the Edges: A Disabled Women’s Reader

Living the Edges book cover, with a white title on background of an abstract type painting with a road or path and floating spheres of colourHere’s a book for your list, if you’re celebrating a gifty holiday soon – or just splurge on it for yourself!

Living the Edges: A Disabled Women’s Reader, edited by Diane Driedger, was launched last week in Canada, and it should contain plenty of interest for readers of FWD/Forward.

The McNally Robinson book-launch blurb is as follows:

Diane Driedger has written extensively about the issues of women and people with disabilities over the past 30 years. Diane is an educator, administrator, activist, and researcher in the area of disabled women’s issues in Canada and internationally. She is also a visual artist and poet, and holds a Ph.D. in Education. She lives in Winnipeg.

This collection brings together the diverse voices of women with various disabilities, both physical and mental. The women speak frankly about the societal barriers they encounter in their everyday lives due to social attitudes and physical and systemic inaccessibility. They bring to light the discrimination they experience through sexism, because they are women, and through ableism, because they have disabilities. For them, the personal is definitely political.

While society traditionally views having a disability as “weakness” and that women are the “weaker” sex, this collection points to the strength, persistence, and resilience of disabled women living the edges.

A partial contents list, from Disability Research Forum reveals a whole lot of must-read articles:

“Feminism, Disability and Transcendence of the Body” by Susan Wendell

“Living on the Edges” by Charlotte Caron and Gail Christy

“Mirror Woman: Cracked Up Crazy Bitch Conja Identity” by Marie Annharte Baker;

“Margins Are Not For Cowards” by Cheryl Gibson;

“Triple Jeopardy: Native Women with Disabilities” by Doreen Demas

“Coming Out of Two Closets” by Jane Field;

“Performing My Leaky Body” by Julie Devaney

“To Be Or Not to Be? Whose Question Is It, Anyway? Two Women With Disabilities Discuss the Right To Assisted Suicide” by Tanis Doe and Barbara Ladouceu

“Living Poorly: Disabled Women on Income Support” by Sally Kimpson

“‘Have You Experienced Violence or Abuse?’: Talking With Girls and Young Women with Disabilities” by Michelle Owen

“The Geography of Oppression” by Joy Asham

There was an audio interview with Diane Driedger at CBC’s Weekend Morning Show last Sunday, in which Diane speaks of the book and of her experiences with invisible disabilities and workplace accommodations.

My transcript of the Weekend Morning Show interview, titled “Double Jeopardy”, is below the cut. All errors in transcription are mine.

Continue reading New book: Living the Edges: A Disabled Women’s Reader

Portly + Powerchair + Pedestrian = Panic

Ow. My head hurts.

And this is why.

Power chairs: older and fatter Americans are on the move – St. Petersburg Times:

“A man on a moped crashed into a man in an electric wheelchair the other night in the middle of Fourth Street. There on the front page of the paper was a police tape picture of one of those objects we see all over. The wheeled mobility industry calls it a power chair.

A what? A “power chair”? Wow, I’ve never heard of one of those before! Whatever could this “power chair” item be? What is it for? Should I be frightened? It’s something to do with teh fat, right? Cos there’s “fatter” up there in the headline.

They’re everywhere, it seems, dotting the downtown streetscape, a kind of ant trail from the condos to the Publix and back.

The temptation is to declare these are the new symbols of this city. Used to be folks sitting on green benches, God’s waiting room and whatnot, and now it’s folks sitting on … these.

Truth is, though, power chairs and mobility scooters are far from just a Florida phenomenon, and mishaps are not unusual.

WHAT? These … contraptions … are in places OTHER THAN FLORIDA too? SOMEbody really did just discover powered mobility devices for the first time. And they’re not happy.

[…] Electric mobility devices, or EMDs, are everywhere because of trends in geriatrics and bariatrics. Those are the portions of the health care industry that deal with old people and fat people.

This is America, getting bigger and older, fatter and grayer, rolling into the future.

[Snip prolooooooonged agonising – they’re not quite motorised vehicles, they’re not quite bipeds, what do we CALL them? How do we TREAT them? The sky is falling!]

They don’t need to be registered, after all, and they don’t have state plates. And what about the people in them? They don’t need a license. Does that make them pedestrians? They’re clearly not using their feet.

[More agonised whining. Did you know that now and again, old people drink alcohol? Shocking, I know.]

State law also says sidewalks are for pedestrians. No motors.

Hmm.

Reeeeally? Are you sure about that State law? Did you, say, look up what “pedestrian” means? Here’s a clue, from a the 2010 Florida Code, TITLE XXIII MOTOR VEHICLES, Chapter 316 STATE UNIFORM TRAFFIC CONTROL , 316.1995 “Driving upon sidewalk or bicycle path”, which I found with a 60-second Google search:

(1) Except as provided in s. 316.008 or s. 316.212(8), a person may not drive any vehicle other than by human power upon a bicycle path, sidewalk, or sidewalk area, except upon a permanent or duly authorized temporary driveway.

(2) A violation of this section is a noncriminal traffic infraction, punishable as a moving violation as provided in chapter 318.

(3) This section does not apply to motorized wheelchairs.

Section 3 is fairly recently clarified, but it’s clear from other law sites that motorized wheelchairs were considered pedestrians by custom before the clarification.

Now that that’s settled, back to the “older and fatter” article:

Continue reading Portly + Powerchair + Pedestrian = Panic

Howard Hyde Inquiry Ignores Ableism As Cause of Death

Note: This post discusses police violence against people with mental health conditions.

The results of the Hyde Inquiry were released on Wednesday.

Some things about the Hyde Inquiry, since I don’t think it’s been widely covered outside of Nova Scotia. I wrote this summary several months ago:

Howard Hyde had a diagnosis of schizophrenia. The treatments he was on were making him sick, so he stopped taking them. He became violent.

His wife called the mobile mental health team – a project in Halifax that will go to you rather than you needing to go to them. She then called 9-1-1.

Two days later, he was dead in police custody, having been tasered.

Various things went horribly wrong. Among them were -and continue to be – the police’s inability to deal with people who have schizophrenia, amongst other mental health related conditions.

What they should have done was taken him to the hospital. Which they did, for a bit, and then left, returning him to lock-up.

His wife had tried to contact them and make sure that he was okay, and that they were aware that he had schizophrenia.

“I really wanted him to be in the hospital and get the treatment he needed for psychosis,” she said.

He had been taken to hospital for assessment, and the hospital staff requested that he be returned to the hospital after his arraignment hearing. He was not.

Parts of the surveillance tape of the tasering itself are “missing”.

“Hyde began struggling when officers tried to cut the string from his shorts. Though images were not caught on tape, surveillance audio recorded sound of the scuffle. Edwards can be heard saying “Howard, sit down.” Fellow Const. Greg McCormack is then argued to have said “You’re going to be doing the f***ing dance next, Howard,” although his voice is muffled.

It was also revealed that more than 30 minutes of footage of Hyde in a cell waiting to be booked has gone missing.”

I’ve since learned that what was actually said to Howard as the police officers approached him with a knife:

A surveillance camera captured the moment when an officer told Hyde a utility knife would be used to remove a knot from the drawstring in Hyde’s shorts, saying: “I just have to cut off one of those balls there.”

Anyway, as I said, the results were back. After 11 months of looking into the death of a man who police were called to help, we’ve all been told that Howard’s murder was an “accident” and it had nothing to do with his mental health condition.

“The only useful approach is to understand that Mr. Hyde died because of physiological changes in his body brought on by an intense struggle involving restraint,” Derrick wrote. “He did not die because he was mentally ill.”

I suppose this is technically correct. Howard’s death was not because he was mentally ill, his death was because the police were ill-equipped to deal with someone having a mental health crisis. I don’t have statistics about the number of men having mental health crises that are murdered by police officers every year, but I do know that I can’t go a whole month without at least one report, and it’s an issue that the Chief Justice of the Supreme Court of Canada feels needs to be addressed.

I think it is naive to state that Howard wasn’t murdered because of his diagnosis. I think it ignores a frightening history of people with mental health conditions being murdered by police officers. I think it ignores that the criminal justice system is not equipped to effectively deal with people with mental health conditions. I think it ignores that there are limited resources available for people with mental health conditions and their families to get the help they need to cope with crisis situations.

I think it completely ignores the fact that Howard’s wife called the police for help, and two days later he was dead.

So yes, Howard Hyde isn’t dead because he had schizophrenia. He’s dead because ableism kills.

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.

Send your links to recreading[@]disabledfeminists[.]com. Let us know if/how you want to be credited.

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):

Photobucket

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

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.

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.