Category Archives: normality
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.
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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.
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.
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.
[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).
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.
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.
- 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. ↩