Category Archives: i’m right here

An open letter to abled people who like to glare at people who use disabled parking spaces

Also see: An open letter to abled people who use disabled parking spaces by Annaham, which this is jumping off from. Since I drafted this, s.e. also wrote Dear Imprudence: Who Appointed You the Parking Police?!

Dear abled people who like to glare at people who use disabled parking spaces,

Hi there. It’s great that you’re so conscious that disabled parking spots are for disabled people! I’m pleased you’re so keen to keep disabled spots for disabled people – after all, that’s the law and the right thing. People who aren’t disabled certainly shouldn’t be using those spots.

However, you know what my problem with what you do is? My problem is when you take your anger out on people who are using those spots legitimately. I don’t know if you glare and shake your head and tut because you don’t notice the disability signs/stickers on the front of the car – or if you think they’re faking their disabilities – or if you think those crummy disabled people simply don’t deserve to hog the best parking spots. I don’t know if you do this because you don’t expect to encounter disabled people out and about, so you think the parking spot user isn’t legit. I don’t know why you’re letting dominant narratives crowd out the person there in front of you.

I’d also like you to keep in mind that some people who need disabled parking spaces are prevented from getting the sticker. The red tape involved can be incredibly difficult to negotiate, especially for someone running on the second shift for the sick. Some people who need stickers fall through the cracks formed by the “we need to tighten restrictions because of the tiny number of fakers!” meme.

Just keep in mind that, just as there are a lot of people out there who use disabled parking illegitimately, there are also a lot of people who make life harder for people who are using the parking legitimately.

Don’t be one of them.

Sincerely,

Chally

Happy Veteran’s Day! You Don’t Exist!

I received a message on Facebook today (my personal account, not FWD/Forward’s account, which is not currently being updated because *ahem* Facebook seems to refuse to fix their blog importing tool and I can’t keep up with manually posting it every day…but I plan to try… /Facebookrant). It was one of those “fun meme” invitations, asking me to participate.

“Change your profile picture!” it said, “For Veteran’s Day, it would be great if we all changed our profile pictures to a picture of a veteran!”

How odd…said I. I haven’t changed my profile picture in almost a year…

It continued: “It doesn’t have to be a picture of your husband! Just any picture of anyone who has or is currently serving would be great, and a great way to honor our veterans!”

I might have just deleted it except for that last part. It doesn’t have to be a picture of your husband…

I think about how many times I would attempt to do anything official on the phone, and would asked for my husband’s social, instead of the sponsor’s (that is military speak for the military member who sponsors the dependents for benefits).

I think about how many times I would pick my kid up from daycare after PT, in my full Navy PT gear, and someone would ask me if my husband was in the Navy.

Mostly, I think about the way that the VA is still scurrying to keep up with the care that women veterans need. Some put the number from Iraq and Afghanistan alone at 200,000 active duty women, excluding National Guard and reservists. Women are left behind, with no resources, or resources scattered so far and away that they are inaccessible to those who need them most.

Which is why pieces like this one from NPR kind of really irk me, when they seem to mislead broad audiences. Somehow trying to imply that that the VA is some kind of miracle worker, reaching out to every woman veteran who is in need of services, and that they are meeting the diverse needs of women veterans. It is putting up a lovely window dressing on a filthy, dirt covered window, making sure enough of the filth is smeared out of the way so you can see a very narrowed scope of things from your apartment. The fact is they are hardly meeting the needs of their male veterans, in the ways of mental health, or meeting needs in a timely manner at all. Women veterans, however, are not having their needs met. They are missing the same marks with women, but completely whiffing on things like women-specific health, military sexual trauma, and accessible centers. We could ask Ruth Moss about all the extra ways they failed her, or the homeless women veterans with children who have no where to turn because the closest facility that can help them is a thousand miles away, and usually isn’t run by the VA anyhow.

Today I went to a Veteran’s Day Ceremony here on our base. I won’t go into details about how the President — who is here in Korea — was supposed to be there, or how they changed it at the last moment. I watched as VFW representative,s dressed in their various hats, went around and thanked the collected men in uniform in attendance. I stood there, a (friend’s) baby strapped to my chest, while my daughter, in her Brownie uniform, handed out  programs to the guests.

I was just another wife, with a gaggle of girls around me. Taking up space, snapping pictures, getting in the way. It never occurs to anyone that the passel of wives standing around may also have served a purpose in the peace that is being observed. We are unremarkable, though something to be glared at if our baby starts crying while the General is speaking.

The VA is not making progress towards addressing the needs of women. And they won’t because our society doesn’t recognize us. Women — wives — are mutually exclusive from veterans and servicemembers.

We are invisible. It’s like we don’t exist.

But Really, It’s For Your Own Good…

Overarching Moderatrix Trigger Warning for Strong Language. And by “Strong Language” I mean that I swear a lot.

I pretty much knew that my life was going to get fucked up when my doctor had a Permanent Change of Station (PCS). I knew this, because according to the laws of karma to which I tend to adhere, shit was just going too perfectly for it to continue going my way.

Sometimes, gentle readers, I really just don’t like being right. Sometimes I do prefer to be wrong once in a while.

I would have liked to have been wrong when I had my appointment with Dr. Maybe. I have to see an Internal Medicine Specialist because they are the closest thing we have here to someone who can specialize in treating my condition. They are who I have to rely on to be my quarterback. When I called to make the appointment and explained that I knew that my regular doctor was PCS-ing and I would need to see whomever was replacing her, I was told that this doctor would have to do because he was not yet available. Fair enough. I made the appointment.

According to my pills (I have to count them) I would have just enough to make it that far. I can not run out. Let me repeat that. I CAN NOT RUN OUT. My quality of life bottoms out if I miss even one dose. I know this because sometimes I forget if I have taken my regular dosage or not, and I can’t take one “just in case” because “doubling up” would be worse than missing one. I know within a few hours if I have indeed missed that dose, because life begins to suck some major shit, and the fetal position begins to feel like too much effort.

I made the appointment.

Dr. Maybe greeted me. Told me within five minutes, and without really talking to me during that five minutes, or without really examining me, that I needed to lose weight and watch what I eat. Exercise and a diet change would help that, and that it would make the pain go away.

Just like that! The magical cure! The Bingo Card free space! Dr. Maybe has no idea what my diet at home is like (we make almost everything fresh, because we are very privileged to have a really great commissary and a local Korean market with fresh produce). He has no idea what my exercise routine is like, how much walking I have incorporated into my daily routine, how it makes me pass out from exhaustion at 1930 most nights and how it makes me weep with pain. How I try to swim once or twice a week, even though the Physical Medicine doctor and the Chinese Medicine specialist that I have consulted with both said I need to back off because it is causing more pain. Also, had he read my file, he would see that this condition began when I was active duty Navy, and in the best condition of my life, best shape of my life, and at the height of physical fitness, outperforming women two age brackets below me on Physical Readiness Tests just out of boot camp. It started when I was running seven miles a day on what I was told were just shin splints but were really stress fractures. It started when I had “Seeing Jesus” on a pain scale migraines that five days in the hospital couldn’t solve, but my commander insisted that I be out running again two days after surviving.

So, I’m gonna go with, no. The weight loss will not magically take the pain away, and my diet is just fine. What he can get me is a nice re-hashing of an old eating disorder battle, some nice body dismorphia, and a scorching case of shattered self-esteem. Not to mention no chance whatsoever that I will ever make an appointment with him again. Ever. Dr. Maybe is definitely a Dr. Won’t.

The pain was there before the weight. If diet and exercise is your answer, you are solving the wrong problem, doc. Fuck you very much.

I did receive a nice letter in the mail today from Medical. The Deputy Director of Clinical Services would like me to know that she has reviewed my file and decided, that for my own safety, she noticed that I have been receiving too many controlled substances from too many different providers over the last few months. As a result, I must now get all of my prescriptions written by Dr. Pre-Approved, and if she is not available (and since she is pregnant, as I found out, this might be a problem soon), I can petition to have Dr. Also Pre-Approved write them and have it approved on a case-by-case basis. These doctors are presumed to be not my primary care managers, and my PCM must get all of my scripts approved through one of them (in that order) before I can have any scripts. Ever.

Now, it already takes me almost 30 days to make any appointment with a doctor I see regularly, and this new rule is basically forcing me to somehow fit another appointment into my schedule, balancing the 30-day schedule. I am only allowed two of my meds in 30-day allotments due to hospital policy even though TRICARE approves them for 90-days at a time. Fun. Scheduling is tight. The schedule doesn’t allow appointments to be booked more than 28 days out, and most providers are booked 30 days out already. I am already having to call daily to find out if I can even schedule appointments at all.

Also, over the last two years — repeat for fucking emphasis — TWO YEARS NOW the same doctor has treated me and written all of my scripts. I have not had any prescriptions written by any other doctor during the time I have been here in Korea with the exception of the time I sprained my ankle and was seen in the emergency room. Now, my doctor PCS-es and four days later this letter is drafted now that she is no longer here to advocate for me? Raise your hands if anyone else finds that odd or convenient.

I go immediately to the hospital’s Patient Advocate, who is supposed to liase between patients and medical staff. I explain all of the above about as calmly as I can and I am somewhere between barely controlled panic and simmering rage, with my partner filling in what he can. I ask to see what from what information they have based this claim. She asks me about two referrals I’ve had in the last two weeks, both made by my departing doctor (the referrals are all signed by her). Neither one of them gave me controlled substances, and I sought out their care to avoid increasing my narcotic usage specifically to avoid any impression of drug seeking, even though my use of controlled substances is very low, lower than even my departing doctor was recommending. I even try to ignore pain to avoid taking extra meds, which we know doesn’t work for chronic pain, but I live in a fairly scared state. The military deploys doctors often, and it is hard to make the switch easily for chronic pain patients. I have to walk a careful line. I wouldn’t even let the Physical Medicine doctor, who ordered my TENS unit (at my urging) and tried acupuncture, refill my pain meds because I didn’t want this exact thing to happen.

I demanded to speak with the Deputy Director who made this call. To confront her directly. I am told that she makes these calls to protect patients like myself from becoming addicts. I point out that first meeting with a patient and reviewing cases — speaking to humans — could avoid the harm such a thing as this situation is causing. Throwing a targeted policy at a person you don’t know could potentially harm a patient and is adverse to good patient care, and violates my rights as a patient. In my case, I was already doing, in theory, what is being asked of me. I simply want the chance to choose the doctor for myself and to have the doctor who treats me be the same doctor who prescribes my meds. Dr. Also Pre-Approved was the next doctor recommended to me, by my departing doctor, to try. He was the doctor briefed on my particular case. This should be my choice to make, irrespective of what list he falls on. Some arbitrary person who knows nothing about my case is not better suited to choose this than I am.

I demanded to have this letter removed from my file. While the PA insists that the language is ambiguous and doesn’t call me a drug seeker, I adamantly insist to her and point out all the ways that it in fact does, and explain why this will make my life more difficult. Why it places more burden on me. Why it creates more hours in the Second Shift for the Sick. How it has already created mistrust between patient and doctor for me, leaving me in severe amounts of “super legit” pain for hours while a Chief Corpsman (HMC) read through my record, one page at a time, to make sure I wasn’t seeking drugs before coming to the novel conclusion that I was a chronic pain patient in — wait for it — chronic fucking pain.

It is little things like this, little notes printed off by someone who has never met a patient, signed by someone too important to give a damn and too busy to be arsed to make time for people skills, that make life nigh impossible for PWD every day. We are not trusted with our own care. We are told how things are going to be, who is going to provide it, and how often it is going to happen. We are sideswiped with half-truth information, and always, ALWAYS thought the worst of.

We are vulnerable.

I guess this is why they have to crush us with these ableist policies.

They are, after all, for our own good, right?

Right?

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.

ADAPT Protests partially lock-down White House! Media Yawns, Changes Subject

I spent most of my weekend pretty much glued to Twitter following ADAPT’s latest action in Washington, DC and wondering where the media was, especially after a huge group of wheelchair users blockaded one of the White House gates and 16 people were arrested. I actually thought that the White House security arresting a group of people with disabilities would surely be the sort of thing that the media would pick up on.

Foolish me! Just like with the Arnieville protests that s.e. wrote about last week, the media is basically ignoring this four-day-long protest in Washington in favour of more important things. Despite repeated hunts by me and several other people, the only mention of the protest, “partial White House lockdown”, arrests, and march is this CNN report, which only quotes White House staff and the ADAPT webpage. Apparently CNN couldn’t even find someone from ADAPT to quote directly. (Also, the photos of the event that ADAPT have posted make it clear that CNN’s report is factually inaccurate.)

[If you would like to read NationalADAPT’s tweets, a good place to start is their September 18th tweet, and just keep going from there. Their timeline includes a variety of photos taken of the event, and also will point you towards other tweeters that were there.]

ADAPT has been protesting at the White House at least once a year (sometimes twice a year) since 1997, and has been holding protests in other cities across the US for 25 years. The focus of their protests for the last 11 years has been the Olmstead Decision and the Community Choice Act.

Eleven years ago, in the Olmstead decision, the Supreme Court said that Americans with disabilities have the right to live in the most integrated setting. Yet today, states are responding to budget shortfalls by drastically cutting home and community-based services. These draconian cuts are forcing seniors and people with disabilities into nursing facilities and other institutional settings because they don’t have the services they need to remain independent.

On Sunday, ADAPT held a funeral, complete with casket, to both mourn and bring attention to the number of people with disabilities who have died in nursing homes around the country while fighting to get out of them. Monday involved marching directly on the White House. While CNN reports that 9 people handcuffed themselves to the White House gates, the ADAPT photos and Reports make it clear that far more than 9 people were involved in this action.

The Park Police had closed the sidewalk and street in front of the White House around 10 in the morning as ADAPT approached. When the police used an SUV to block ADAPT and the sidewalk, the bulk of ADAPT charged into the intersection of 15th and G Streets stopping traffic completely. The police had believed they had successfully stopped the line of activists when suddenly all the traffic was stopped and the intersection was packed with activists.

“The people they thought were meek or expendable,” said Jennifer McPhail about the police force, “were the people who had taken their power.”

While ADAPT’s actions continue today across Washington, DC, members who are required to attend court this morning after being arrested have been illegally challenged at the court to produce documentation for their service animals, and need to bring attention to ADA violations to the very people one would expect to be enforcing the ADA.

When a local Washington paper was challenged on their decision not to report anything about the ADAPT protests, their response was first that they don’t cover national protests and then, when it was pointed out this was also a local protest, that it was a matter of debate, and there were protests every day in DC. Other media sources haven’t responded to questions about their lack of coverage.

I do understand this, to a point. Certainly I’ve attended protests that have received very little media coverage, and most of that in either local papers or in grass roots news organizations. However, at what point do we start to seriously question why multi-day – or, in the case of Arnieville, multi-week – protests by people with disabilities are getting ignored? The ADAPT actions have decades of history, and touch on issues that are hot-button topics in the US right now, such as health care, funding for social programs, and the standard of living.

And yet, still, despite everything: we protest, and are ignored.

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.

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. 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.]

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.

Normalising Accessibility

The radio station I’ve been listening to for most of my life has a habit, when announcing community events, of indicating whether they are accessible. This generally refers specifically to wheelchair accessibility, although I have heard announcers address other things, like chemical sensitivity, depending on the announcer and the event. The point is, my whole life, whenever I hear community events announced, it has been announced with a note about accessibility. That kind of does something to a person, you know?

The announcers put accessibility in the same rank of importance as event information like where the event is, when it is, what is happening, how much it costs, and who to contact for more information, tickets, reservations, and so forth. As it should be. Because all of this information could determine whether someone can attend; if something is happening this Friday at 1:00, for example, I can’t go, because I’m meeting a friend for lunch. If it costs $40 USD, I can’t go, because that’s more than I want to spend. If it’s in Lakeport, I can’t go, because I don’t want to drive that far…and so forth. The whole point of an event announcement is to provide people with enough information to determine if they want to go to an event, and if they can attend.

I mentioned the fact that the radio station does this on Twitter and got a number of intrigued responses, and the thing that struck me was how radical people thought it was, that the radio station would make a habit of including accessibility notes on event announcements. For me, it’s commonplace, and I expect to see accessibility discussed on posters and other event announcements because I’ve been socialised to expect it; a big part of the reason for this is that I live in Northern California, very close to the Bay Area, where there is a highly active disability community that has agitated long and hard for things like this. In my own town, Fort Bragg, I can’t say accessibility is great. There are a lot of issues I’ve identified and I’m sure there are many more I haven’t. And I’d note that some events here are very bad about providing accessibility information on posters, and are shocked, simply shocked, if I contact organisers to ask, so I’m not pretending that accessibility notes are universally provided, or universally useful, in my little hippie paradise. But they are there.

Accessibility notes, to my mind, serve two important functions.

The first is that they provide a service for people with disabilities. You can know, right off the bat, whether you can attend an event, especially if organisations make a point of using comprehensive accessibility notes. For example, the radio station just aired a spot on a film screening that sounds interesting. It is in an accessible venue, but is the film captioned or will there be an interpreter? Is there an audio description available? This was not mentioned. Having complete notes about accessibility saves people the trouble of making a phone call/sending an email, and also avoids the  potential situation where the person on the other end says ‘oooooh yeah, our event is totally accessible’ and you get there and find out it’s not. I think accessibility information should be default with any event announcement; you wouldn’t announce an event without the date, right?

The second purpose, one I was discussing with Anna recently, is that accessibility notes remind people that we exist. Every time you hear an announcement saying something like ‘this venue is not wheelchair accessible,’ that sends a message. Hey, there are people who use wheelchairs! Hey, they can’t get into this event! That’s not cool! Encountering accessibility notes reminds people to think about the accessibility in their own lives and it acts as a quiet reminder; I mean, really, who wants to be the person running an event accompanied with radio announcements basically saying ‘wheelchair/scooter users, parents with strollers, and possibly people with mobility impairments not welcome’?

Another area where I have noticed accessibility notes coming up more and more these days is on recipes online. In part, that’s because I tend to hang out with other people with disabilities, so it’s not like accessibility notes are a Thing in the broader online cooking/recipe exchange community, although they should be. Seeing those notes reminds people that, hey, some people with disabilities like to cook, and, hey, it is really helpful to be able to skim the notes at the top of a recipe to see if you will be able to prepare it. After all, most recipes indicate if they are vegetarian/vegan these days, and many provide notes about common allergens like wheat, dairy, and soy. All this information is considered important because it will determine whether you can make the recipe, so why not add an accessibility note? Something like ‘you will need to lift a heavy stockpot full of water from the sink to the stove’ can be a dealbreaker. (Unless you have one of those rad flexible hose things that lets you fill pots right next to the stove, in which case, can I move in?)

Having accessibility notes does not create universal access. But it’s certainly a step in the right direction, of getting people to think beyond ‘special treatment‘ by positioning accessibility as something broadly relevant to most people, and something of equal importance as ‘who, what, where, when, why, and how.’ Which, for many of us, it is.

John Stossel Wants YOU! To Be Afraid of the ADA

Not being from the US, I had this idea in my head that the Americans with Disabilities Act (ADA) must be awesome. I mean, come on! It’s been 20 years now! Ramps to every building, disability friendly policies, accessible washrooms in every hotel lobby! I get all starry-eyed just thinking about it.

People with disabilities who have actually been in the US are probably either rolling their eyes or giggling at my naivety.

In the last few weeks, I’ve read about airlines being fined for not following the ADA, despite repeated complaints from customers that they hadn’t been, continuing issues with post-secondary education, online content, and accessibility for students who are blind or otherwise vision-impaired (no mention of blind or visually impaired teachers) and students needing to sue in order to get attention to the fact that the new content delivery system was not accessible to them (again, no mention of blind or visually impaired teachers), the Attorney General of Massachusetts needing to step in to demand movie theater chains provide accessible content in all their theaters… The list goes on, while “advocates” tell people with disabilities not to sue because it upsets the non-disabled when they do.

And maybe those “advocates” have a point. Because even though one can find example after example after example of law suits – threatened or actually carried out – before businesses, universities, and even government offices will follow the ADA and “allow” people with disabilities the “rights” they’re guaranteed in the US, some folks still feel the need to produce opinion pieces claiming these lawsuits are frivolous and that the people who take them on are parasites (Content Warning: John Stossel).

Under the ADA, Olson notes, fairness does not mean treating disabled people the same as non-disabled people. Rather it means accommodating them. In other words, the law requires that people be treated unequally.

The law has also unleashed a landslide of lawsuits by “professional litigants” who file a hundred suits at a time. Disabled people visit businesses to look for violations, but instead of simply asking that a violation be corrected, they partner with lawyers who (legally) extort settlement money from the businesses.

Some disabled people have benefited from changes effected by the ADA, but the costs are rarely accounted for. If a small business has to lay off an employee to afford the added expense of accommodating the disabled, is that a good thing — especially if, say, customers in wheelchairs are rare? Extra-wide bathroom stalls that reduce the overall number of toilets are only some of the unaccounted-for costs of the ADA. And since ADA modification requirements are triggered by renovation, the law could actually discourage businesses from making needed renovations as a way of avoiding the expense.

I feel like I’ve taken apart aspects of this argument before, mostly because it seems the arguments get repeated over and over until one wants to make a Bingo Card and be done with it. But, to save me some keystrokes: Let’s Bust Some Myths: People with disabilities just want to sue the world into compliance (there’s a transcript to the video linked there in the comments [1. Back when I wrote this I felt like I was making a very witty point by not “choosing” to be “nice” and putting the transcript up – if you wait for people to be “nice” then you wait a long time! I wouldn’t do that now because I think it’s shitty to make people sit around and wait so I can score some sort of political point.]), Needs Are Not Special and Accommodation is not “Special Treatment” (written by s.e.), Why Being Nice Isn’t Enough (which is meant to address the “just ask for accommodations!” part), “Bad Cripple” – you know, the fakers who are just scamming the incredibly generous disability system for the huge cheques they can rake in – oh, and we’ve got multiple posts just here at FWD about workplace accommodations being treated like a huge drama and a favour that doesn’t need to be granted rather than a right, people who work with actual people with disabilities assuming all people on prescription drugs are dangerous addicts, and how the opposite of disabled is not employable.

I think my favourite bit of the quote above, though, is the “If a small business has to lay off an employee to afford the added expense of accommodating the disabled, is that a good thing — especially if, say, customers in wheelchairs are rare?” I love that sentence, I want to cross stitch it on a little sampler and hang it up on my wall.

A Very Short List Of Businesses You Are Unlikely To See Wheelchair Users In:

1. Ones that don’t have a ramp to allow access to wheelchair users.

Seriously, that’s the basic criteria for shopping in this one-wheelchair-user household. We choose our restaurants, our coffee shops, our bookstores, our yarn stores, our sex toy shops, our grocery stores, our housing, our favourite tea place all on whether or not the shops themselves allow wheelchair users to enter. We don’t even go to one of the malls in the city because half the shops are too crowded to allow wheelchair user, so yes, John Stossel, if your business doesn’t accommodate wheelchair users chances are you don’t have many customers who are wheelchair users.

(Gentle reader, I cannot believe I just typed that sentence 20 years after the ADA passed into law.)

Honestly, that John Stossel is paid actual money to write opinion pieces that amount to “cripples are just sue-happy freaks, the ADA is why the Exxon oil spill happened, and service animals like snakes are ruining it for everyone else” – especially while service animals are constantly being turned away illegally – is especially irritating when we’re still fighting for something as simple as the right to be paid minimum wage for our work.

“We’re not his kids, we’re adults, and we’re our own people”: The Trouble with the Jerry Lewis Telethon

Today is Labour Day in Canada and the US, which for many people means the end of the Labour Day Weekend Jerry Lewis Telethon. Wikipedia conveniently describes the Jerry Lewis Telethon so I don’t have to:

The Jerry Lewis MDA Telethon (also known as The Jerry Lewis MDA Labor Day Telethon and The Jerry Lewis Stars Across America MDA Labor Day Telethon) is hosted by actor and comedian, Jerry Lewis to raise money for the Muscular Dystrophy Association (MDA). It has been held annually since 1966. As of 2009, the telethon had raised $2.45 billion since its inception. It is held on Labor Day weekend, starting on the Sunday evening preceding Labor Day and continuing until late Monday afternoon, syndicated to approximately 190 television stations throughout the United States.

On the surface this probably looks like a good thing, but digging a bit deeper: For many people, this is one of the few times they’ll see images of people with disabilities on their t.v. screen (and from a noted authority and beloved celebrity), and the entire thing is one drawn out pity parade.

Since 1991, protesters, including Laura Hershey and Mike Irvine, have tried to raise awareness about the way that the Jerry Lewis Telethon, and Jerry Lewis himself, treat actual adults with disability, and have discussed how these sorts of pity parades affect the public perceptions of people with disability. In 2001, Hershey wrote:

As we in the disability-rights movement keep trying to explain, our biggest problems come not from our physical conditions, but from a society that fails to accommodate us. Lewis’s telethon plays up the problems, without suggesting their sources or solutions. For instance, those sappy vignettes will make much of an “afflicted” person’s inability to wash his own hair, or get herself to the toilet, without any discussion of the urgent need for publicly funded personal assistance, or of the problems posed by the architectural barriers designed right into the layout of most private homes.
Trouble also arises from the fact that thousands of families dealing with disabilities in the U.S. and Canada are denied adequate medical care and equipment – necessities which should be basic human rights, not handouts accompanied by a drum roll and tally.

I’ve written about my disdain for both the Telethon and for the praises Lewis gets despite referring to people with disabilities as “half-persons” who should “stay at home”, and I think this is still an idea that people find very challenging. It’s easier to view these sorts of fund raising telethons as doing Good Things. They are supposed to, after all. That it’s still leaving people with disabilities begging for basic rights, access, and assistance that shouldn’t be necessary in this age of the Americans with Disabilities Act (ADA) and Accessibility for Ontarioans with Disabilities Act (AOWD) isn’t comfortable to think about. That the main use of these funds is for finding a “cure” – by which they mean a pre-natal test – rather than assisting families in purchasing wheelchairs or renovating a home to make it wheelchair accessible, or in assisting people with disabilities in getting support during or immediately after a move seems to surprise people. Your money isn’t going to help actual people with disabilities. It’s going to help the Muscular Dystrophy Association, and to aid Jerry Lewis in his continued insistence that he’s a humanitarian. These are not really the same things.

Many people with disabilities have written about their perceptions of these telethons, and the damage they do, as well as the issues with giving a humanitarian award to a man who treats actual people with disabilities with such disdain. Hershey’s most recent columns are Speaking Out against the MDA Telethon and Laura’s Labor Day Weekend Column. Liz Henry wrote last year about her dose of morning rage regarding the telethon, and there are many links there that highlight the issues around Jerry’s Kids. There’s also the 2007 Blogswarm, Protest Pity, which features more than 35 blog posts about the Telethon and the Protests. You can also read From Poster Child to Protester, which may be the first thing I ever read about the protests and the Issues with Jerry Lewis.

Sometimes, though, the best way to combat the pity parade is to show people with disabilities talking about their lives, and their lived experience. Laura Hershey made this video as part of the “It’s Our Story” Project. Transcript follows:

Transcript:

The ‘It’s Our Story’ titles roll while tinkly piano music plays. White symbols of sign language and a person in a wheelchair flash against the background, which is suggestive of a US flag, with the continental United States in the blue square instead of the usual 50 stars.

The video opens on Laura Hershey, a powerchair user wearing a nasal cannula and glasses. The title of the video is “Jerry’s Kids”, and I believe she’s referring to the group “Jerry’s Orphans”.

Laura: That’s actually a group that was started in Chicago by Mike Irvin, Chris Matthews, and several other people. And I worked with them a lot organziing these protests nationally. I think what the name says is that Jerry Lewis doesn’t have the right to claim us as his quote “kids”, especially as he’s not interested in our perspective. He completely trashes people who question or challenge the telethon approach. He’s attacked us in the press, calling us ungrateful, claiming that he bought us our wheelchairs which is, you know, completely untrue.

You know, whatever ego trip he gets thinking of himself as our saviour, or our daddy, or whatever it is he thinks, we reject that.

We’re not his kids, we’re adults, and we’re our own people. We don’t belong to him.