Category Archives: social attitudes
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.
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.
By Annaham 19 September, 2010. bodies, i'm right here, identity, introspective, normality, othering, social attitudes ableism, ablesplaining, allergies, anaphylaxis, communication, disability, disabled teens, disclosure, growth, myths and misconceptions, personal, personal stories, problematic attitudes, social attitudes, things people say, this is not helpful, unexpected obstacles, we are not to be believed, why is this hard
Here’s some nostalgia for ya, gentle readers!
My dad, who was completely AB for the record, lived alone in the home I now own, and for a good portion of my life had many of his needs taken care of by members of his immediate family. My Grammy did most of his laundry, unless my aunt happened to be there doing laundry on Dad’s laundry day. My aunt, who was a book keeper for the family business, handled Dad’s bank account; she paid his bills for him back in the days prior to auto bill pay and signed most of his checks (most of my birthday cards suspiciously looked as if they may have been signed by her as well, to this day I can not tell their writing apart in some instances). It isn’t that my Dad couldn’t take care of himself or wasn’t an adult, but that they just simply did it for him after my parents divorced and he was living alone. Of course, Dad did things in return for Grammy, like grocery shopping and yard work after she wasn’t able to do it for herself…but that is another story for another day. Some people talk about ‘love languages’, and this is one spoken by this side of my family.
I don’t know that my aunt resented having that responsibility. I don’t know if any of Dad’s other siblings, all married with kids, resented this arrangement. I don’t really care, because it was something that was worked out between them, whether spoken or unspoken. There was, more than likely, a lot of traditional and gendered reasons why this arrangement took place. It also maybe had a bit to do with my grandmother being widowed, my Dad being her only child that was single and living alone, and who had the time to spend with her, taking her to Senior Breakfasts and stopping in for coffee in the morning after his night shift. It worked for them.
Perhaps this is why, when I read this letter sent to Emily Yoffe, AKA Dear Prudence, at Slate Magazine which was passed on to me by s.e. smith, I am inclined to find the myself rolling my eyes at the letter writer (emphasis mine):
Q. Reston, Va.: I have a 30-ish sibling with a health issue that has prevented him from working for the past four years. My parents support him—his own townhouse, car, new clothes, food, medicine, etc. They do everything for him (laundry, groceries, errands, etc.) Although his illness is real, he also spends a lot of time on his social life (out on the weekends, going to bars, etc.) and dates. In contrast, my wife and I (who live 10 minutes away) are trying very hard to stay afloat in this economy with small children, a house we paid for on our own, cars we paid for on our own, etc. We don’t receive much help (even babysitting). I can’t help but feel as though I am penalized for being functional, and I feel a great deal of animosity toward my family. Now, my parents are starting to ask me to help out my “poor” brother more, when my own family is already stretched incredibly thin for time/money. If it were up to me, I’d tell my brother to start acting like an adult and do more for himself. My parents would be horrified and upset. Any advice for getting through this tactfully?
Yes, yes. My brother has more than me! And he didn’t have to work for it! It’s not fair! (Sorry, I had a flashback to… well… my whole childhood.) I would love to be him, with all the damned free time and cool stuff and the devotion of my parents!
Too bad that the special perks come with strings. In my Dad’s case it was solitude and possibly depression, which I won’t pretend didn’t show in his demeanor. In the case of Reston, Va.’s brother, it comes with unspecified (thankfully he had the tact to leave this personal info out) medical conditions. We really don’t know the extent of them. We don’t know how much mobility this person has, how it impacts his daily life, if the reason he can’t work is due to pain, or what the disability is. This is mostly because it isn’t our damned business, but the point is that the grass isn’t always greener. Sometimes it is just sod.
Our good friend Reston, Va.’s brother isn’t being a Good Cripple, either. While his parents are doting on him for whatever their personal reasons are, he has the nerve to want to have a social life. He even goes to bars! We all know that bar ALWAYS means loud, rowdy club where every person is inebriated from imbibing in copious amounts of cereal malt beverages until wee hours of the morning, and never a quiet place where people can sit, talk, perhaps enjoy quiet music and a couple of cocktails or just a sandwich and the [insert sports team] game. There is quite a huge difference.
Reston, Va. wants to define the terms of what adult behavior is, and the hard truth is that “adult” doesn’t mean the same thing for every person. Having 2.3 children, a house, and a car while punching a time clock every day isn’t the universal litmus test. I read this letter as more of a cry that Mummy and Daddy aren’t babysitting more often so that he can go out once and a while or aren’t helping him with expenses than anything else.
Needless to say, I was not impressed with Prudie’s answer (again, emphasis mine):
A: If your brother is capable of hanging out at bars and going out on dates, I’m wondering why he’s not capable of doing his own laundry and getting his own groceries. It sounds as if despite his real problems, your parents are only exacerbating his dependency. They’re probably worried about when they’re no longer around and are trying to line you up to fill in for them.
You need to have a talk with your parents about the present and the future. Explain that despite his illness, it would be beneficial for the entire family if your brother took more responsibility for himself. You can say you love your brother, but you don’t have the financial or emotional resources to take care of him, and you in fact think more energy needs to go into helping him be a productive member of society. If they don’t want to hear your message, that’s their business. But you need to make sure they hear yours that you can’t take him on.
I am irritated to no end the way that Prudie here equates the ability to do laundry and grocery shop with being a “productive member of society”. Also, the way that it is obvious that one activity is the same as another, and that obviously if the brother is able to do one, since she can so capably glean from the letter exactly what the brother’s limitations are, he must be able to do all the others. Clearly, being disabled means that we must sit at home, in the dark, crying about how miserable we are if we are to ask anyone for any kind of help.
Prudie might be shocked to hear that PWDs are not all forcibly sterilized anymore (though it still happens) and that many of us manage to *gasp* have sex lives. Some of us manage to accidentally enjoy ourselves with full, meaningful social calendars.
But that doesn’t negate our need for accessibility, assistance, and actual empathy. Which she lacks. But based on the letter I see her, she won’t be lonely.
I fully support this letter writer setting boundaries for what he is willing to take on with regards to the care of his brother, especially since, honestly, it seems that he is more worried about what he is not getting that is equal to or greater than his brother’s benefits. I wouldn’t want to be cared for by someone who didn’t want to be part of my life or who would begrudge me having something that gave me moments of happiness. I don’t want people like that close to me. It is why people are afraid to have Facebook pages or interact publicly: the policing of what PWDs should be allowed to do is so rampant that they even lose benefits because they aren’t disabled enough in public. Boundaries are important on both sides, though, to protect everyone, and Reston, Va. is under no obligation to hurt himself or his family financially to care for his brother.
Yoffe was so off base in her response, though, that she was holding a puck when the first pitch went out.
Also worth noting is that has seemed to leave the brother out of this conversation altogether. Everyone seems to want to talk about him and his needs, how helping him will affect them, but I see no mention of talking to him about what he actually needs or wants. It is completely possible that Reston, Va.’s brother would prefer to get his own groceries or that he doesn’t need his socks folded, it is just that no one has bothered to ask.
Turned out that during all those years my Dad was able to balance a checkbook after all. He let my aunt do it because it made her feel like she was taking care of him because he was alone, since my Dad’s family is fairly close-knit. They did things like that for each other, not because the other couldn’t do them, but because they cared for each other, and that is how some people show it.
By Ouyang Dan 18 September, 2010. bad advice, Dear Imprudence, disability activism, intersectionality, relationships, shaming, social attitudes ableism, caregivers, Dear Imprudence, Dear Prudence, disability, Emily Yoffe, intersectionality, it's not fair!, problematic attitudes, sex, social lives, social treatment
On last week’s Dear Amy, a reader wrote in for some relationship advice. The reader’s girlfriend is becoming more distant, and the reader wants to know what to do:
Dear Amy: I have been in a relationship with a woman for two years. I love her. She says she loves me. She says she wants to marry me and be together forever.
In the beginning, she needed to see me every other day, if not more often. All of our phone calls were long and rich with conversation.
Over the last several months, she has cheated on me numerous times with an ex-boyfriend, although she says she doesn’t like it, didn’t plan it and doesn’t love him.
Lately all phone calls happen while she is watching television or reading. They are very empty.
She has turned down all of my offers to get together.
When I express my feelings of confusion or when I tell her I miss her, she makes me feel I’m out of line. She is hostile.
How can I get her to open up to me again without seeming needy and insecure?
I believe the ex may be back in the picture, but I don’t know if this is the reason for the distance.
She is also bipolar.
How can I bring the love of my life back into my arms again?
— Hopelessly Devoted
Notice anything about this letter? As I read along, I thought ‘gee, this sounds like a situation where the relationship is pretty much over, and the party writing the letter just doesn’t realise it, or wants someone else to affirm it. There’s some emotional distance going on, and the letter writer is struggling with it.’ This is a scenario that plays out pretty much every day in relationships of all sorts.
And then, bam, the second to last sentence. ‘She is also bipolar.’ Just kind of thrown in there. It feels like an afterthought to me, rather than being brought up at the start of the letter as a piece of information that may potentially be important, and it feels less like being aware of something that might impact their relationship, and more like an attempt at just tossing off blame for where the relationship went; ‘she’s bipolar, and that’s why all of this is happening.’
Are there some disabilities that impact the way people think and interact with others, process information, and handle emotional conversations? There absolutely are. Being aware of the things that might change someone’s comfort level or ability to engage with a conversation is not the same as blaming someone for an integral part of that person’s identity and deciding that person can’t be approached at all. The girlfriend has become the disability, and everything wrong with the relationship is suddenly because of the disability.
Dear Devoted: You already know the truth. Your girlfriend has lost interest in you.
Whether she is cheating on you again or is going through a depressed cycle of her bipolar disorder, you cannot force her to love you, want to be with you or even have an honest conversation with you about your relationship.
I suggest, therefore, that you be completely honest with yourself and frank with her about your own needs.
You want honesty, fidelity and a close, romantic relationship. So say so. You won’t come off as needy, but as a guy who knows who he is and what he wants.
You also have to be willing to walk away from a relationship that is so imbalanced. You deserve better.
Amy’s approach here doesn’t really integrate an honest discussion about disability and how it might impact how the girlfriend is feeling. There’s one brief mention about ‘going through a depressed cycle,’ but that’s it. The advice about being frank is pretty solid; the letter writer definitely does need to communicate, but it might be good to start with communicating on terms the girlfriend will feel comfortable with. Perhaps she doesn’t want to talk about this on the phone and would feel more comfortable in email. Maybe she wants to meet in person. Maybe she needs some space and is having trouble articulating it.
The way Amy approaches this, it’s centered on the letter writer’s needs. She classifies the relationship as ‘imbalanced’ while providing rather imbalanced advice. She’s right when she says that you can’t force someone to love you, but lack of love might not actually be what is going on here. Indeed, the girlfriend may very much love her partner, and just be in a bad place right now.
It’s not clear from the original letter whether the people involved in this relationship have had a conversation about the girlfriend’s disability and how it sometimes impacts the ways she thinks and feels. Sometimes, people are just distant and not interested in a relationship anymore and it has nothing to do with disability. Sometimes, people are having a hard time of things in ways that are related to their mental health conditions, and need to be supported. Not by being reduced to their disabilities, not by having their disabilities blamed for everything, but by having a space where their needs are accommodated.
The message we are left with from this particular advice column seems to be that people with bipolar disorder are inherently unsuitable for relationships or serious conversations, and neither of these things is true.
Today’s Recommended Reading focuses on how to make event-sites more accessible to people with disabilities, and experiences people with disabilities have had with accessibility at events and in their communities.
Accessibility Discussions: How To
This list is no where near comprehensive (I went a hunting for a few specific ones I know I’ve read and couldn’t find), so please feel free to leave more links in the comments!
Are you looking for ways to outreach to more people? Are you trying to get people involved? Are you trying to keep them involved? How a document reads and looks affects whether people can understand the information being shared. This is a checklist for document accessibility. It also includes some tips to think about when making programs or services accessible to all people.
Glenda Watson Hyatt at Do It Myself: A Checklist for Planning an Accessible Event
Whether planning a meeting, workshop or multi-day conference, your goal, no doubt, is to assist all participants, including those with disabilities, to feel welcomed and able to fully participate in the event
This checklist is intended as a starting point in planning an accessible event, which likely requires more than ramps and wheelchair washrooms. The key is to consider every aspect of the event and what barriers a person with a disability – whether it be physical, mobility, hearing, sight, or cognitive – might face, and how you can eliminate or minimize those barriers to ensure all participants feel welcomed.
Access Fandom Wiki is a tool to help make Science Fiction conventions and conferences more accessible to people with disabilities. Within you will find specific instructions and resources for carrying out these aims.
When you are planning a meeting or event, you want to make sure that everyone can participate, including people with disabilities. By planning ahead, you can build accessibility into every aspect of the meeting.
The two main areas you need to consider when planning an accessible meeting or event are:
- physical access to the meeting space
- access to the meeting contents and proceedings.
Here are some general things to keep in mind.
Disability Access @ Stanford – Planning an Accessible Event (One of the things I like about this one is the “questions you should be able to answer” section, because I’m amazed at how many people cannot tell me where their barrier-free entrance is, even when they have one.)
Q: How do I get from [point A] to [point B]?
Familiarize yourself with stair-free pathways in the vicinity of the event (e.g., parking lot to main entrance) and to notable locations…
Q: Where is the nearest wheelchair accessible bathroom?
Know ahead of time where the accessible bathroom is, and how to get to it from your event location.
Accessibility Discussions: Experiences Of
alias_sqbr: Using a Mobility Scooter at WorldCon
Walking is easy on the brain and hard on the legs. Using the scooter is the reverse, the level of concentration required is somewhere between walking and driving, and by the time I got back to the hotel after my first excursion I needed a mental break and did the rest of my (much less taxing) exploration on foot. It got easier with practice, and was also much less taxing indoors in a familiar space without the worry of cars etc. The convention centre was perfect, lots of big empty flat carpeted areas. I got up now and then when it was more convenient but still ended up doing MUCH less walking than normal and as a result was much less tired and in pain than I would otherwise have been, and got to enjoy a lot more of the con as well as being able to go out to dinner etc. One issue was that all that sitting gave me a sore bum/lower back/legs, and I became quite uncomfortable on the plane trip back. I’ve been doing a lot of half lying with my legs out since getting home and am fine now. My brain is also less fatigued, once I got used to the scooter the general lack of fatigue made me more mentally awake than I usually am at the end of a con.
“But I thought everywhere was accessible now.”
How I loathe that sentence. It usually follows my asking “so why did you hire somewhere inaccessible for your event? Because now I can’t come.”
For example, I’ve just spent the last 3 days at a film festival/conference tied to my course… I arrived on Thursday, picked up my ticket and was told by cinema staff “it’s in screen 2, which is not accessible.”
And, of course, the “but I thought…” line swiftly followed from the director of the event who’d hired the venue.
Ira Socol at SpeEd ChangeTo be fully human
I move through a lot of schools, and through a lot of public spaces, and everywhere I go I see people who are made to be less than fully human. The high school kids who can not read sitting in classrooms during “silent reading” time. The girl in the wheelchair set off to the side of the middle school choir because everyone else is on risers. The poor reader at the bank or hospital faced with piles of incomprehensible paperwork. The man or woman denied the ability to go out to eat because of too few or badly placed “handicapped” parking places. The child who struggles with writing who is denied the right to communicate in his classroom. The university students forced to spend large amounts of money and time to “prove themselves” “disabled.”
Codeman38 at Normal is Overrated: Of Privilege and Auditory Processing
The Normal Auditory Processing Privilege Checklist
- I can watch first-run movies in any theater and still understand a majority of the dialogue without having to attend a specially scheduled screening with subtitles.
- I can understand messages broadcast over PA systems without a lot of difficulty.
- Lectures are just as easy for me to comprehend without visual feedback such as PowerPoint as they are with visual feedback.
Heather Farley at Oh Wheely… Blogging Against Disablism Day
These people have no idea of the impact they have on my sense of worth. And they don’t care. That shrug of ‘it’s not my problem, it’s yours’ means that I am excluded from that part of life. I’m apparently not worth their effort. On the flip side I have to say that for every person who shrugs there are another five people offering help, opening doors, and keeping my faith in humanity alive. Unfortunately it’s the ‘shruggers’ who stick in my psyche.
For every little battle I fight there are ten more that I have to let pass by. There just aren’t enough hours in the day to argue the toss every time. And every time I do I become less important in my eyes, less worthy of my effort, less deserving of theirs.
If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.
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).”
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.)
–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.
Conversations about body image come up often in feminist communities, and unfortunately, many of those conversations are predicated on the dual ideas that all people should love their bodies and that lovable bodies are healthy ones. This can be seen in the language used by campaigns designed to get people thinking about body image; I can’t tell you how many ‘positive affirmations’ I have encountered that say things like ‘love your body, because it is beautiful, healthy, and strong.’ I guess people who don’t have healthy or strong bodies can’t love them, or people who actively reject beauty can’t love their bodies either. And, of course, this reads like a mandate: You must love your body, because the idea of not loving your body is highly alien, as is the idea of feeling neutral about or disassociated from your body.
For people who may dislike their bodies, for any number of reasons, these conversations end up being exclusionary, as they are often treated as ‘unenlightened’ for not loving their bodies and they are lectured in an attempt to get them to submit. For people with disabilities, an added layer of complexity is introduced, as it is assumed we do not or could not love our bodies because of our disabilities. Similar complexity can arise for some members of the trans community, who may experience inner conflict with our bodies but feel uncomfortable expressing it, for a variety of reasons ranging from fear of being perceived as spokespeople for the trans community when we are just talking about ourselves, to fear that discussing dislike/hatred for one’s body is not acceptable. Especially when encountering campaigns mandating that people love their ‘natural’ or ‘inner’ beauty, I am left with more questions than answers.
I was reminded of this by ‘Black Torso,’ the piece I featured in my post on sculpture last week. What, for example, is a breast cancer survivor who chooses to get reconstructive surgery supposed to do? The rebuilt breast is not ‘natural,’ so does that mean the patient does not love ou body? What about the breast cancer survivor who cannot afford reconstructive surgery or is not a candidate for it? Maybe ou hates the scar and is uncomfortable looking in the mirror, but feels unwelcome in body image discussions rooted in the idea that ‘love’ is mandatory for all people when engaging with their bodies.
I’d like to start deconstructing conversations about body image to make a seat at the table for people who might feel relegated to the fringes of those conversations right now, and there are a couple of angles that need to be considered with more care in conversations about body image and in campaigns designed to spark conversations about body image.
The first is the idea that everyone must love their bodies. Not all people love their bodies and they should not be required or pressured to; indeed, we should be actively creating a space for people who aren’t comfortable with the bodies they are in that doesn’t consist of ‘we will educate you into loving your body.’ We should talk, too, about the reasons why people may experience conflict with their bodies, and how social attitudes, life experiences, and other things may play a role in the relationship people have with their bodies, without singling out people or shaming them for not loving their bodies, or not loving them all the time.
The second is the idea of ‘healthy, strong, natural’ bodies being celebrated in these campaigns and focused on in language about body image. The fact is that not all bodies are healthy, strong, or natural. Health is something that changes over time from person to person, and while some people may always have healthy bodies, others do not. ‘Natural’ is also not necessarily something everyone possesses, and I dislike the idea that a body needs to be ‘natural’ (who is defining this, incidentally?) in order to be celebrated.
Finally, we have these really complicated intersections between body image and disability, compounded by a lot of social attitudes about disability. Disability is scary, so disabled bodies are scary, and I notice that many body image conversations leave out people with disabilities, because no one knows what to do with us. Looking through many of the responses to the American Able art project, I was struck by the fact that many people were uncomfortable with viewing a disabled body, especially in the context of desirability. If our bodies are so frightening that people can’t see them on television and in ad campaigns, it shouldn’t surprise me that people have trouble fitting us in to discussions about body image.
There doesn’t seem to be a lot of room, in body image conversations, for people who may feel conflicted about their bodies, for people who reject a lot of the ‘affirmations’ promoted, for people who may not fit into the categories some participants in these conversations assume apply to everyone. Are there exceptions to these rules? Conversations where people are thinking about issues like disability and the rejection of beauty? Yes, there absolutely are, but they are exceptions, not the norm, and that is a trend I would like to reverse.
This is what we talk about when we talk about working towards the neutral place; creating a space where bodies and identities are neutral, so there is room for everyone, room for all relationships between people and their bodies, room for people at all levels of exploring their identities and their bodies.
Last week, Hurricane Earl appeared to be bearing down on the Eastern Seaboard on the United States, and there were a number of stories about communities preparing for evacuation, or weathering out the storm. Watching the news unfold, I noted a pretty glaring absence in the coverage: Any discussion, at all, of people with disabilities. Ever since Hurricane Katrina, the US government has been aware that there are significant gaps in disaster preparedness planning for the disabled community. Several reports since then have suggested that, despite policy changes, most communities are still not ready to deal with the evacuation of their disabled residents.
What this boils down to is that people with disabilities get left behind in disasters. If they weather the disaster itself, they are left without any support networks, for as long as it takes to reestablish community services. For people dependent on electric medical devices, this can translate into death within hours or days as electricity services are cut and backup power sources dwindle away, one by one. For others, it means sitting for days without access to food, medications, and basic hygiene services.
‘Be prepared,’ they tell us. Establish an evacuation plan. Don’t plan on depending on family or public services. Stock up on at least a week’s worth of medication. Register with community organisations (ok, I guess, you can depend on some public services?). If you rely on electric medical devices and need services like dialysis, find locations where you can access electricity and the health services you need. Set up multiple failsafes, multiple friends who will check in on you.
And, you know, all this sounds great, in theory. But how does it work out in practice?
Let’s say that you have a degenerative neurological disease and you spend most of your time in bed. You cannot sit upright, walk, or stand. That means that, if an evacuation order comes through, you need transport that can accommodate you. That transport? Can cost thousands of dollars, one way. Assuming you can access it, which is not a guarantee, because transport services may not be running or may already be booked. Are you supposed to maintain a $30,000 USD adaptive van in the garage in case you need to evacuate at some point?
Let’s say you, like most people with disabilities, are living near, at, or below the poverty line. How are you going to stock up on a week’s worth of expensive medications and supplies? Or you, like many poor folks in urban areas in the US, regardless of disability status, do not have a car. You are dependent on public transport for evacuation. You can’t ‘just get out’ and you certainly don’t have a car packed with evacuation supplies. You are limited to what you can carry. Your friends don’t have cars either. How are you supposed to pack a 50 pound extra battery for your chair, again?
You may have limited friend networks, and many of your friends may be disabled as well. You all need help to evacuate in disasters. You can check in on each other, but none of you can help each other evacuate. What if you’re in a remote, rural area and the closest dialysis center is hundreds of miles away? What if there are no community organisations in your area or, you call to register with them and they say they can’t help, don’t take people like you, have no resources for people like you? What if you call around to emergency shelters and they aren’t accessible, don’t have backup generators for power? What if you can’t communicate with the people running evacuation services and emergency shelters?
There’s a long list of ‘what ifs’ that deconstruct the supposedly ‘easy’ process of planning ahead for a disaster. Every single disaster preparedness guide for people with disabilities I’ve looked up starts with ‘make a plan,’ but doesn’t really provide information on how to make that plan, what to do if it’s functionally impossible in your community to plan. How can people be expected to ‘just make a plan’ when they lack access to basic services even when there’s no impending disaster?
A common stigmatisation ploy used against people with disabilities is that we are ‘dependent’ on the government and rely on the government for everything. But, when it comes to survival, we are reminded in disasters that we actually cannot depend on the government. People with disabilities are told that there are no measures in place to assist them during evacuations, and they need to make their own arrangements. Functionally, that results in being left behind to ‘weather it out’ and hope that, when emergency responders finally start arriving, they can enact a rescue before it’s too late. It’s too expensive, evidently, to include us in community disaster planning.
We won’t even talk about what happens after the disaster, when people with disabilities have a harder time recovering than the general population. Just making it through a disaster at all is a feat, given the way the deck is stacked against us. The government is working on making disaster planning more inclusive, but it’s not working fast enough. It’s another reminder of the impact social attitudes has on policy; we are an afterthought, we are demanding ‘special treatment’ when we ask to be evacuated to safety with the rest of the population.
What kind of disaster planning is available in your community? If there is a disaster, what will happen to you?
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), 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.
- 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. ↩
“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:
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.