Category Archives: normality

Recommended Reading for 8 October, 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?

Anna linked to the Australian Broadcasting Corporation’s coverage of this story earlier in the week, now here is Cara’s analysis at The Curvature: Australian Women Report Sexual Abuse in Victoria Psychiatric Wards:

Everyone deserves safety, no matter what their mental health or disability status. But there is an extra responsibility to keep safe those who have been placed in restrictive and vulnerable environments.

stuff to say in class by Amanda Forest Vivian at I’M SOMEWHERE ELSE:

I mean, to me this is common sense and people should already be questioning “non-disabled people>>>>everyone else forever,” but if we really need a study to show that forced normalization in every area of life is really NOT SMART, studying women would be an easy way to do it.

Sorry I’m so inconvenient by Kali at Brilliant Mind Broken Body:

I hate things like this, where it feels like I’m treated as an inconvenience. It’s not like I get some kind of power trip asking for accomodations. I don’t push people around because it’s fun. When I ask for something, it’s because I NEED it, and my health, safety, and ability to continue going to school are jeopardized.

Look, I’m sorry I’m so inconvenient. But if you had to deal with the sheer number of inconveniences I deal with every day because of my disabilities, you’d realize that I’m really asking for very little.

From the U.S. Equal Employment Opportunity Commission, American Apparel Sued by EEOC for Disability Discrimination:

American Apparel, Inc., a clothing manufacturer which operates what it says is the largest garment factory in the nation, violated federal law when it terminated a disabled garment worker while he was on medical leave for cancer treatment, the U.S. Equal Employment Opportunity Commission (EEOC) charged in a lawsuit filed last week.

At the New Zealand Herald: Call to rescue IHC providers rejected:

Health Minister Tony Ryall has ruled out a Government bailout of disability services facing hundreds of millions of dollars debt for backpay arising from an Employment Court ruling.

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

We also have the right to be in public

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

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

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

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

This is ableism.

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

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

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

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

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

Extra Homework for PWDs

I’ve recently gone back to school and today had my first class session. This week has consisted of various orientation activities, meeting the faculty, sessions on academic integrity and what constitutes plagarism, learning about the library and the career services office, all that kind of thing. I’ve finished each day exhausted and unable to do anything more than flop on the couch – as has everyone else in the incoming class.

The first thing the professor did today was say that this was her return to teaching after serving for several years in a university position to increase diversity. The second thing she did was announce her rules for the 3 hour class – no laptops, no cell phones, and no eating. And I cringed. My disabilities don’t really require accommodations for any of those policies. I have the hand strength and fine motor control to take notes by hand, although in the past when I’ve had more problems with muscle tremors, I’m not sure that I would have. I also don’t need a cell phone alarm to remind me to take meds at specific times, or to record the lecture or discussion for me to refer to later. One of the meds I take requires me to keep my blood sugar and salt levels fairly stable, so I sometimes find myself in a crisis and needing to eat something immediately, but I could make sure to eat right before class and keep something in my bag to eat during the 10 minute break if I needed to.

So I’ll be ok – which is good, because just imagining what I would have to go through to get an accommodation made me even more exhausted than I already was. My first step would have been to talk to the professor about the policies and ask for an accommodation. Frankly, I found her somewhat intimidating and not super approachable based on her initial lecture and the idea of disclosing my disability status to her was not exceptionally appealing. If I’d needed the accommodations during the first class session, I would have had to interrupt the entire class to ask to speak with her outside, alerting everyone there to my special needs. She explained to the class that the exclusion of laptops and cell phones was designed to facilitate and encourage class discussion and minimize distractions during the class session, so I can imagine that she might have made an exception to that policy for accommodation needs. But she explained her exclusion of food was because she “didn’t want to hear you chomping on a sandwich,” which would still be a problem if I were eating for disability reasons.

In either case, it would have been immediately and obviously apparent to the other students in class that I had gotten permission to violate the stated policy. Given that the laptop and cellphone ban was not enthusiastically received by any of the students, I am sure I would be questioned about why I got to have a laptop, or why I was special, and why couldn’t they have one too.

But imagine that the professor did not agree to provide an accommodation, or that I needed the support of the Students with Disabilities office to make the request or document my need for such an accommodation. I identified myself as a student with a disability on my application materials, but I believe that information was simply for diversity purposes, rather than identifying me to professors or to the Students with Disabilities office. I would have to call the disability office to schedule an in-person intake appointment. I have no idea if they require documentation of my disability – I don’t have any medical records documenting my diagnosis and so would have to request those from my psychiatrist.

The mere thought of going through all this made me weary.

How could this have been avoided? I think if the professor had announced the policies and then added “if anyone needs disability accommodations regarding any of this, please talk to me during the break or after class.” Signaling awareness of the possibility that students may need accommodations and willingness to discuss and provide those accommodations would have eliminated a lot of my potential concerns in less than 10 seconds of extra time.

As it turns out, I’m dropping the class for other reasons, so I don’t need to follow up on the eating issue. Which relieves me greatly.

The Canadian Government Is Going To Court So They Don’t Have To Make Web Content Accessible To Screen Readers

[Content Note: Not all of the links I have included in this piece have comments, but many of them do, and those comments are basically full of “Stupid disabled people wasting everyone’s time and energy by wanting the world to treat them like human beings” comments.]

If you’ve been following Canadian politics this week, you could very easily come away with the impression that the most significant – or perhaps even the only – thing going on with this week’s opening of the Federal Parliament was the Gun Registry Vote.

That there’s a federal court Charter challenge brought forth by Donna Jodhan arguing that blind Canadians are being discriminated against by the Federal Government for refusing to make their website content accessible to screen readers is not really getting a lot of attention. (Cripples these days! It’s like they don’t sell papers/make page views.)

A little bit of background information first. Canada has a Charter of Rights and Freedoms, which went into effect in 1982 and is the Thing against which laws and the like must be “tested” in order to be considered actually legal in Canada. To give some lovely controversial rulings, the reason Canada has no abortion law is because it was found to violate the Charter’s guarantee to security of the person (and no law has since been passed) and it was found that refusing to include “homosexuals” in protections against discrimination violated Section 15, or the right to Equal Protection Before the Law, even though sexual orientation wasn’t included in Section 15.

Section 15 is the important one here:

15. (1) Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.
(2) Subsection (1) does not preclude any law, program or activity that has as its object the amelioration of conditions of disadvantaged individuals or groups including those that are disadvantaged because of race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.

Now, I Am Not A Lawyer, and it’s been about 10 years since I studied the Charter, so I’m going to leave that out there and not discuss my personal interpretations because they don’t matter. What matters is two things: 1) What the court says and 2) That the Federal Government is arguing that they shouldn’t have to be accessible to screen readers in court.

The latter is, of course, being read as Jodhan wasting tax payers money in a frivolous lawsuit, not the Federal Government for refusing to have accessible content.

From what I can tell, this is what’s going on: In 2004, Jodhan attempted to apply for government jobs online. However, the site wasn’t set up to allow screen-readers to access the site, so she was unable to do so. In 2006, she attempted to fill her Census out online, and again, the federal government website was not accessible to her screen reader.

On Tuesday [September 21], Jodhan will argue in federal court that her inability to apply for a position on the federal jobs website or complete the online version of the 2006 Census breached her equality rights under the Canadian Charter of Rights and Freedoms.

She will also argue that this violation and her ongoing inability to access the government’s online information and services constitute a breach against all blind and partially sighted Canadians, said Jodhan’s lawyer David Baker.

About 3 million Canadians have visual or other impairments that make it difficult to access the Internet.

The Federal Government is, in turn, is responding with “What, you think you should have a right to access the same information that everyone else can? Ha ha! Ha ha!”:

Internet access to government services and information is not a right guaranteed in law, the government says in its written submission to the court.

“Alternative channels available did allow (Jodhan) to access services and information independently, in a manner that respected her privacy and dignity,” it says.

With more than 120 government departments and agencies and more than 23 million web pages, “it is unlikely that the government’s web presence will ever be perfectly accessible to all,” it adds.

Frankly, if the Federal Government doesn’t think that their websites provide information in a timely fashion, and that access to that information isn’t something that they should prioritize, why are they bothering with them in the first place? And if they do think it’s important, why are they in essence arguing that “It’s important for most people, but not for the three million Canadians who won’t be able to access it?”

I support Donna Jodhan’s fight for equality of access to information for all Canadians. I hope you do, too. If so, I strongly encourage you to email your Member of Parliament and let them know. Perhaps if enough of us contact the government and let them know we value accessibility for Canadians with disabilities, they’ll start acting like we shouldn’t have to go to court just to get it.

This is the email I sent to my MP, who happens to be Megan Leslie, and cc:ed to the leader of the NDP. Please feel free to adapt it to send to your own MP. (This should give you their email address.)

Dear Megan,

I recently learned of Donna Jodhan’s Federal Court case, arguing that the Canadian Government must provide screen-reader accessible content on their websites, as reported in the Toronto Star (http://www.thestar.com/news/gta/article/863379–blind-woman-says-federal-websites-discriminate-against-the-visually-impaired) and the CBC (http://www.cbc.ca/technology/story/2010/09/18/to-blind-accessible-feds.html) In light both Section 15 of the Charter of Rights and Freedoms, and Canada’s recent signing of the Declaration of Rights of Disabled Persons, I’m appalled that the Federal Government would waste tax payers’ dollars in arguing that 3 million Canadians should not have the ability to access government services online or apply for government jobs online.

In this day and age, it’s ridiculous for the government to argue that access to the internet is not necessary. According to the Toronto Star, government lawyers are arguing “Internet access to government services and information is not a right guaranteed in law”. While I agree that this is technically true, in refusing to provide this access, the government is arguing that blind and visually impaired Canadians should have less access to government services and information than Canadians who are sighted.

Megan, every day it is clearer to me how many societal barriers are put in place that prevent people with disabilities in Canada from full participation. The time and energy the federal government is frivolously spending in defending their lack of web accessibility could be far better put to use in bringing the government’s websites up to the same standards as those in other countries, standards that are reasonable to expect in the 21st Century.

This is such an important issue, and I hope that the NDP will work to bring awareness of it to Canadians, and encourage the federal government to stop fighting against people with disabilities, but fighting for them.

Thank you,

Anna P.
cc: Jack Layton

In The News: Toronto StarUPICBCGlobe & Mail

Reactions, part two: Social aspects

In my last post, I talked about the painful physical process of the near-fatal allergic reactions that I’ve been having since the age of 14. In this post, I want to address the aspect of these “attacks” that is, in some ways, crappier than the actual attacks: peoples’ reactions.

Often when I mention that I am allergic to certain foods — when I am, for example, meeting people for the first time in a situation where there is food, and where these issues may come up — I do not mention that my allergies are potentially life-threatening, as I’ve learned my lesson from some of the past responses of certain acquaintances:

“So you could die from eating peanuts? I’ve never heard of that.”

“I knew this kid who was allergic to [food], and he almost died.”

“Whoa, if I couldn’t have [food], I would, like, die/miss it soooooo much. Do you miss [food]?”

“Peanut allergies are so over-diagnosed! Parents these days are way too overprotective of their kids.” (Hilariously enough, this one gets trotted out in regards to some other disabilities/health conditions as well.)

“Are you sure you’re allergic? It could have just been a one-time thing.”

“How much of [food] could you eat before you’d have to go to the hospital?”

It could be that some of these folks are just trying to make conversation (particularly in the second and very last examples), but most of these responses have left me either totally baffled or itching to make some sort of snappy comeback. Because I am a fairly polite person in my day-to-day life (no, really!), the times that I have made snarky comments in response have been relatively few. While the disability activist part of me firmly believes that I have zero imperative to politely respond to cluelessness about something that could kill me (and almost has), my own social programming tends to stop me from doing or saying anything rash. The thing I resent, though, is that sometimes I am treated like a human “learning experience” of sorts — some people, once they find out about this health condition of mine, become convinced that they can bounce their conspiracy theories about how all peanut allergies are caused by anxious parents off of me, or delight me with anecdotes about this kid they know who was allergic to, like, everything and was in the hospital for a month this one time. Or perhaps they get really bad hay fever in the springtime, and they are just so excited to find someone who knows how annoying and awful allergies can be!

Somewhat ironically, the most heinous unsolicited comment on my reactions that I ever got was from a friend of my mom’s, who had known my family for a very long time. This woman was of the ardently “spiritual” sort — this is not, in itself, a bad thing, but in her case, parts of it happened to translate into a long-standing belief in the universal applicability of “alternative” medicine and mind-body integrative healing. One afternoon, this person phoned my mom in an utter panic, convinced that she knew the reason for my scary and bewildering allergy attacks. She had a piece of proof that no medical science person could possibly have:

“Anna is faking her allergy attacks to manipulate and control you!”

This is not something that anyone, particularly an already-frightened 16 year-old who has no idea why she still gets these attacks spontaneously, should have to hear. My mom, to her credit, excused herself from the conversation with this person, and then told me about what had happened — adding that should this person call back, I did not have to speak to her if I did not want to. (Which I did not, for the record.)

In that interaction lies one of the most crucial issues regarding the way many people with disabilities are treated: Those of us with potentially life-threatening health conditions are never to be trusted. Those of us with chronic health conditions are never to be trusted. Those of us with disabilities must be faking it to get attention, to gain the upper hand in whatever way we can. We must be using our conditions as excuses to get pity from those close to us, or from anyone, really. We must be faking — things can’t really be that bad. That dire. That frightening to us and those who are close to us. Those of us without “objective” proof are constantly suspect, constantly under scrutiny from nondisabled people (at times, even from other people with disabilities); a similar process is at work even for those who do have “objective,” concrete proof of their disabilities or conditions. Are you sure you’re allergic? You could eat peanuts if you really wanted to, right? She’s just acting like that for attention. She’s just using it as a get-out-of-[whatever]-free card. Well, I’VE never heard of that! Are you sure it’s not just psychological? I knew this one guy. . .

That burden of proof has always been on those of us with disabilities and/or health conditions. And sometimes, it’s a burden that feels almost unbearably heavy. No matter how scary the condition you deal with can be, someone always has a question about it, or a theory, or wants to try a misguided attempt at solidarity. Well, you may be thinking, would you rather not have people react at all, since you’re complaining about it so much?

What I would rather have happen is for people who do not have my condition or similar health problems to recognize that, for once, they may not be the experts on something that they have never experienced, or that I do not have any sort of “ulterior motive” simply by having a health condition that just happened to come out of nowhere, or that I may have heard the “do you miss eating [food]?” question countless times. Or that I have a lived experience that is just that — my experience — and that it is different from theirs. For me, simply having that be okay — in other words, not subject to constant monitoring, anecdotes, questions, guessing at motives, trying to find “common ground” based on a pretty uncommon issue  — would be enough.

Guest Post From Jesse the K: Making Space for Wheelchairs and Scooters

Jesse the K hopes you can take a disabled feminist to tea this month. Her previous guest post was 20 Years and a Day for the Americans with Disabilities Act.

Originally Posted at Access Fandom.

These guidelines come out of my experience working on WisCon, a 1000-person annual convention in a recently remodeled hotel.

There are many elements to making your event wheelchair-accessible. While U.S. law requires minimal wheelchair access, never rely on a venue’s general assertion of “oh yes, we’re accessible.” Those little wheelchair stickers? Anyone can buy them and post them at will, even at the bottom of a flight of steps.

There’s an entire shelf of 2-in (5,08 cm) thick books on this topic; so consider this the Twitter version. Links to helpful resources appear on June Isaacson Kaile’s site.

David Hingsburger is a long-time disability rights activist who’s begun using a wheelchair in the last few years. His essay “12 Steps? Me, I’d Rather Sit” captures the frustration of a last-minute change from an inaccessible venue to one that worked for him:

…These things are difficult because while I appreciate everyone’s understanding, I didn’t want it. While I was thankful for the extra effort made to find a room immediately, I didn’t want it. What I wanted was simple. Accessibility.

Accessibility doesn’t just mean I get easily into a building. Accessibility means anonymity. It reduces the need for compassion, understanding, special consideration, to Nil. It allows me to slip in unnoticed and set up quietly. This doesn’t mean it masks my disability, it just makes it mean something very different.…

Verify & report

Do an on-site survey with someone who’s truly familiar with the needs of wheelchair and scooter users. (Not all wheelchair users automatically have this knowledge, just as not all walking people know everything about sidewalk construction. Some non-wheelchair users also have these skills.)

Check for level paths to every area. A single, unramped step is as significant a blockade as two flights of stairs. Wheelchairs need at the very least 36″ (1 m) for corridors and 60″ (1,5 m) to turn around.

Describe any non-conforming areas in your publicity and program: forewarned is forearmed, and it demonstrates that you’ve actually checked the place out. Don’t use the term “wheelchair-friendly,” which has no defined meaning. Do reference any standards the venue meets: “ADA compliant” in WisCon’s case.

Make sure that stages are ramped as well. (Our venue can only ramp one stage at a time. This requires members to self-ID at reg, and program coordination to place ensure the ramped stage and the wheelchair using panelists are in the same room. I know from experience it’s easy to blow this one.)

Wheelchair Parking aka Blue Zones

Providing designated wheelchair parking in all seating areas permits wheelchair users the same freedom to come and go as those using the seats. Well-meaning non-disabled people will often say, “oh, but of course I’ll move a chair out of the way if you just ask.” And from their viewpoint, that’s a one-to-one personal issue. But from perspective of us wheelchair users, it’s a one-to-many problem, since we must ask for seating rearrangement every where we go.

While leaving empty spaces seems like a solution, chairs inevitably migrate further apart, filling them in. The inexpensive and highly effective alternative are “blue zones,” 36 in (1 m) squares outlined with 1in (2,54 mm) blue painters’ tape. It’s bright, stays down on carpet and comes up easily.

If you know how many wheelchair users are in attendance, be sure you make that many blue zones at the big get-togethers. (Otherwise, 1 for every 100 is a rough guideline.) Always have at least one blue zone, especially in the smallest program rooms (where crowding is most an issue). When you have room for two, put one up front and one in the back. The former is great for the wheelchair user who may also have hearing or vision impairment; the latter works well for those of us who get claustrophobic and need to be able to leave right away.

Better microphone use at conventions: a report

Originally Published at Access Fandom.

At My Local Convention, the Access team made a big push toward improving microphone usage this year. This is separate from things we normally do such as marking off chairs for lip readers. Below are revised documents that I wrote to the concom, arguing for an investment in this cause.

I. Hearing impairment is common.

“According to the US Dept of Health and Human Services 1990 and 1991 Health Interview Surveys, approximately 20 million persons, or 8.6 percent of the total U.S. population 3 years and older, were reported to have hearing problems.

“The elderly were more likely than any other age group to have hearing problems (Figure 1). Persons 65 years and older are eight times more likely to have hearing impairment than persons ages 18-34 (i.e., 3.4 percent of the population ages 18-34 have hearing impairment, compared to 29.1 percent of the population 65 and older).”

(Source: http://gri.gallaudet.edu/Demographics/factsheet.html#Q)

Therefore: Hearing impairment is likely to be common at our event.

II. Microphones benefit everyone, thus are an element of universal design.

Hearing is difficult in noisy, crowded situations such as cons, even for those who do not have hearing loss. Factors such as sinus problems can temporarily affect hearing. Mics also benefit those with attention difficulties.

Mics save speakers from having to strain their voices or having to shout. They are a confidence builder for people– they help teach people to value their own voice. It is a professional asset to know how to use a mic properly.

III. Like other aspects of our con: Having good access for hearing will create an environment that will attract people to us; having bad access for hearing will create complaints and disappointed people.

In short: We all benefit from having better microphone usage at our event.

IV. Known barriers and difficulties:

–Mics are expensive
–Cords get in the way and knock things over such as the water glasses. (Proposed solution: cup holders)
–People don’t like using mics or don’t know how to use them well
–Mods don’t always repeat audience questions/comments
–Smaller programming rooms don’t have mics (aren’t wired for them.)

V. Proposals:

–Write on back of name tents: “PLEASE USE THE MICS”. Name tents sit in front of every panelist.
–Create signs, tape to each panel table to remind people to use the mics. We borrowed the word “Sonorous!” which is the voice-amplification spell from Harry Potter for these signs (we’re a science fiction convention.) The signs had an image of a mic with a green circle around it and text that read, “four inches from your mouth because we’re loud and proud!” (or something like that)
–Buy, borrow, scrounge for more mics. We borrowed six from a college, and rented 2 additional mics on top of our normal number.
–Train mods to enforce this, get them to use mics and repeat audience questions. Repeating audience questions not only allows people to hear the question, it also permits people who are lipreading to maintain their gaze in one direction! Our convention has a “mod squad” training which was effective in this regard.
–Have access volunteers raise their hands in rooms to ask/remind people to use the mics. In this way volunteers can speak up for others who may have trouble speaking up for their own needs.
–Long term: get mics into all programming rooms
–Look into wireless mics if possible
–Address the “I’m shy” issue which often prevents folks from using the mics (and/or other resistance). Personally I believe that microphone use can be “normalized” so that nearly everyone simply does it the way we all put on seatbelts, when they are available.

Microphone use: pretty good, but myself and others definitely encountered able-bodied privilege in the form of people claiming their voices are good enough, loud enough, and gosh darnit mics just aren’t natural. In smaller rooms, mic use was worse than in larger rooms. Some people were “mic hogs” (not good at sharing or passing microphones); therefore more mics would be better for 6-panelist panels. Some people gestured with the mics or held them too far from their faces. I believe this shift in culture will take several years but we are off to a good start.

Reactions, part 1

[Warning for somewhat graphic discussion of medical procedures and adverse allergic reactions.]

I have been dealing with weird, severe, and inexplicable allergic reactions since the age of 14.

Most of these reactions have been to food items; my known food allergies include peanuts, various tree nuts, and (wait for it) green bell peppers. Of course, I take great caution to avoid these foods and my exposure to them. Unfortunately, with my immune system, such caution is no guarantee that I won’t have an “attack” out of the blue.

The first “attack” I had, in fact, was one of those not caused by food. I was a teenager at the time, in Paris on vacation with my family. I don’t remember much about my initial symptoms other than I felt overly-warm very suddenly, and decided that it would be a good idea to take a cold bath in order to rectify the situation. My mom found me in the bathroom of our rented apartment, facedown on the tile floor and missing several items of clothing. I had figured, somehow, that putting my face on the tile floor as a method of cooling down would look less weird than sticking my entire head into the freezer. My face, which had initially turned bright red, swelled up so much that I soon found myself unable to see. I had quickly begun to resemble the Bob’s Big Boy logo; I should note here that if you ever start to resemble a famous food-related logo, you should probably go to the nearest hospital post-haste.

My Bob’s Big Boy transformation was quickly followed by giant, blotchy pink hives that appeared on my neck and shoulders. Joining the party somewhat late was a hot, almost volcanic feeling in my lungs that quickly morphed into breathing trouble. Severe breathing trouble. So my family (my mom, my dad, and my younger brother — who suggested that I not look at myself in any reflective surface so as not to become more freaked out) and I took to the streets of Paris in search of a hospital. We found one — after a quick visit to what we thought was a hospital but which actually turned out to be a convalescent home. At the ER, the staff took one look at me and immediately put me at the front of the queue; I was quickly whisked away to a magical land where a nurse tried to calm me down, completely in French, when I loudly protested the insertion of a large IV needle into the underside of my forearm. The only English-speaking doctor on staff, as it turned out, was on his day off, but came in to examine me and assure my family that I was going to be okay.

When we came back from vacation, I had another attack about a month later. And then another. And a few more, until one ER doctor suggested that I get a full round of allergy tests, more commonly known as “scratch tests.”  The scratch tests revealed a substantial peanut and tree nut allergy. I took care to avoid these foods, or any foods that may have come into contact with them. Unfortunately, I still kept having attacks, even when I avoided the dreaded peanuts and tree nuts. I still have them, approximately once every 3-4 months.

Sometimes, I get them as a result of cross-contamination if I eat at a restaurant. Sometimes, I get them for no reason at all — even if I haven’t eaten for a while. The symptoms tend to be fairly consistent: first, a scratchy feeling will start in my throat and lungs, followed by wheezing. Then comes breathing trouble, which tends to feel like an elephant is standing on my chest. Usually, my eyes will then swell up to the point that I cannot open them all the way, or see. Sometimes, I get gastrointestinal trouble as well, the symptoms and signs of which are not things that I can discuss in polite company due to general grossness and/or TMI.

The first five to ten minutes of these attacks are, generally speaking, the worst part(s). By now, my battle plan for dealing with these attacks is well-established: Take a shot or two of my inhaler at the first signs of trouble (usually breathing difficulties plus another symptom), then four or five antihistamine pills. Of course, it takes a few minutes for these things to kick in, which is part of why the “waiting” part is so physically painful. During these first few minutes, I am in some sort of hellish allergy-limbo: it feels like someone or something has put some bricks on my chest and torso, I can’t see or can barely see, and it feels like my intestines are being vacuumed out of me — and the only thing I can do is wait for the medication to start working. I generally consider myself to be a patient person, but nothing will sap your patience like having to wait out a potentially life-threatening medical emergency.

And if that doesn’t work, I have to go to the next level, which is using epipenephrine, a self-contained steroid shot to be injected into the thigh in case my breathing is so severely compromised that I pass out or am in danger of not getting enough air into my lungs.

For these sorts of attacks, there is really no pat, inspirational or life-affirming end, so much as a screeching halt after the medication actually starts working. And this total lack of inspiration or an end in sight is also reflected in some of the responses I have gotten from many abled people in regards to my “allergy issues” (to be addressed in part two).

World Suicide Prevention Day

Description appears below
A golden butterfly in a circle, with "Support Suicide Prevention Awareness"
Today, September 10th, is World Suicide Prevention Day.

Being suicidal, especially if you have long-term thoughts about suicide and suicide ideation, can be a very isolating and lonely experience. Do you tell your friends and family? If you do, how will they react? What about your job? Will you be forcedly committed into psychiatric care? Will people assume that if you haven’t actually harmed yourself, you’re not really suicidal and just faking it for “attention”? If you’re happy and having a good time today, does that mean you’re not really suicidal at all? What exactly do you say, and who do you say it to?

These are the things I wish I could tell you:

Be as kind to yourself as you can. If you are having long-term suicidal thoughts, you are ill. You are not weak, you are not failing, you are not letting anyone down. You are sick, and just like if you had a bad cold, or some sort of infections, you need to take care of yourself, and let your body and your mind recover.

There is not a quick fix. Talking to a friend, or a professional, or a help line, taking medication, spending some time in short or long term care, these are all helpful but take take time, something you can take as much of as you need. I wish I could promise you that talking to someone would force your mind and your body to heal, but it won’t. This is not because you’re a failure, but because you are ill, and again, you need to give yourself time, because you are not a failure, and you are not letting anyone down.

You do not have to be perfect. Just like someone with a cold or an infection may skip their cold medication or their antibiotics, and as a result may get sicker or set back their recovery, you too can end up screwing something up. This does not make you a failure, and you have not let anyone down. You are still worthy of getting the help you need, and you can still reach out to people who want to help you. Again, there is no quick fix, and you are allowed to make mistakes.

I cannot promise you that everyone around you will be accepting. It is not unusual in my travels through the internet to find people writing about how people who attempt or commit suicide are “selfish” or “bad”. These people are wrong. You are ill, and that is not the same thing at all. But there are people who are trained to help you, and are willing to help you in the road to recovery, no matter how hard or how long it is. Some of these people will be strangers, and some of them will be friends or loved ones. I know it’s socially isolating and scary, but please try and reach out, because they want to help you. Here is a small list of resources that may be helpful to you.

Your pain, and how you feel, it is all real. You are allowed to feel these things. You are allowed to be who you are. None of this makes you bad, or undeserving, or unlovable.

I hope you find what you need.

Body Image & Disability: An Entry Into The Conversation

A long time ago, I said this:

People with disabilities, especially women, have all the same pressures currently non-disabled people do to look “good enough”, with added bonus of being either non-sexualised or hyper-sexualised, as well as having people infantize them to an incredible degree.

Talking about disability and self-esteem and body image is very difficult for me. People look at me and see a woman without a disability (or a woman with a non-evident one), and I pass. I don’t get the odd looks that a woman of my age (or younger, or older) using a cane or crutches would. I don’t get the pats on the head that women who use wheelchairs report, and I don’t have people leaping out of the way when I’m using a motorized scooter.

But at the same time, women like me are often used as stand-ins for “horrible”. Whether that’s the simple of “she took off her glasses and suddenly she was beautiful!”, or the more complicated of “oh my gosh! the woman I had sex with is actually a crazy person! Quick, let us make many movies about crazy = bunny-boiler = grotesque!”, I’m well aware that women like me are bad, ugly inside, and unacceptable.

These things add a whole other layer to the conversations that many women, feminist and non, have about self esteem and body image. We are all inundated with the constant barrage of White, Long-Haired, Slender (But Not Too Slender), Tall (But Not Too Tall), Unblemished, Healthy-looking, Young women in most advertising and fashion spreads, television shows, movies, and even on our book covers.1

At the same time, though, poster children and the pity parade are a fairly common image of disabled children – whether with visible or non-evident disabilities – that present people with disabilities as weak, as undesirable, as needing of pity – and always, always, always, as children. Very rarely are images of self-possessed, happy, disabled adults shown, unless they are in one of the “he’s so brave” “look at what she’s overcome” news stories.

I don’t know how this affects other people, or how they deal with it. I know that when Don first got his cane, and then his wheelchair, his self-esteem and image of himself took a hit, and it took a while for me to convince him that yes, I still found him attractive (and I can’t tell you how much I love that wheelchair, since my sexy sexy husband now has energy!). I know for me it would be nice to see images of Actual Crazy Women who aren’t mockeries of women like me, but treated like actual people. It would be nice to see casual fashion spreads with people with evident disabilities in them, rather than only seeing “diversity matters!” posters that include maybe one (male) wheelchair user, usually white.

As I said, I find these things very hard to talk about, because in many ways I don’t even know where to start. While to some extent discussing pop culture and representations there is important, how do we, as individuals, deal with our own self-esteem issues? How do we, as a group, tackle the constant attacks on people with visible disabilities to hide parts of themselves? Make yourself more approachable by putting sparkles on your cane! Soup up your wheelchair and maybe someone will ask you a question! Hide your obvious aid-devices so that they don’t offend people! Cake on make-up so no one can see your scars!

I think there’s so much here to talk about. Please, tell me your thoughts.

  1. The last one is so ubiquitous that until just now I didn’t realise that of all the non-fiction books on my desk about disability, only one has an actual image of visibly disabled people on it. Most of them have very plain covers, or abstract-type art on them.