Category Archives: disability activism

Recommended Reading for 07 October 2010

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

Deeply Problematic: Paperwork & homework, anxiety & ADD: institutionalized and internalized ableism

Paperwork is a form of institutionalized ableism. Paperwork keeps folks who have issues with anxiety, ADD, and likely other disorders from living, from working, from getting the care we need to treat that which disables us. It makes paperwork a daunting, insurmountable task – and its incompletion perpetuates guilt and sends it further away from actually getting done.

Wired.com: Exclusive: First Autistic Presidential Appointee Speaks Out (Thanks to reader Sara for the link!)

Wired.com: Much of the national conversation about autism in recent years has centered around statements by celebrities like Jenny McCarthy and Jim Carrey who claim that autism is caused by vaccines and other environmental factors, and can be cured by things like special diets, behavioral interventions, and alternative medicine. Is that the most productive conversation we can be having about autism as a society?

Ari Ne’eman: No. There’s a disturbing lack of attention to science in that conversation, but the problem goes deeper than that. What we have is a national dialogue on autism without the voices of the people who should be at the center: those who are on the [autism] spectrum ourselves. Instead of focusing on things like quality of life and civil rights, the autism community has been distracted by narrow questions of causation and cure.

Going back to the dark days of Bruno Bettelheim and “refrigerator mothers,” the focus of the conversation has been on placing the blame for autism, and on trying to make autistic people something we are not and never can be: normal. This focus on a cure has prevented us from actually helping people. There’s been a lot of progress in the disability rights movement over the past 20 years, but people on the spectrum haven’t benefited from it because those representing us at the national level have been focused on causes and cures.

We need to stop making autism advocacy about trying to create a world where there aren’t any autistic people, and start building one in which autistic people have the rights and support they deserve. That’s the goal of groups like ASAN, Autism Network International, and of the neurodiversity movement as a whole.

Orlando Sentinel: Chartari Jones: Sanford girl says bullies ‘spit in my hair’

The Sanford girl whose parents said was teased by bullies on a Seminole County school bus in September opened up Monday about her ordeal on national television.

“They would poke me with pencils, call me names and spit in my hair,” Chatari Jones told NBC Today Show host Matt Lauer while wiping tears from her face with a tissue.

WHERE’S LULU: “This American Life” Spotlights “Crybaby” ADA Lawsuit Filers

The episode starts with the extremely-unpopular-with-ablebodies Tom Mundy, who makes a living suing ADA-violating businesses in Southern California. The show’s producer mentions how in California, disabled people can make $4,000 by suing a business for not being up to code. A lawyer who represents business owners estimates Tom has made half a million dollars in just three years.

The producer then drops the bomb that most people who read this blog know all too well, but that most TABs don’t realize: The ADA is not enforced. The government doesn’t even pretend to enforce it – there is no agency (federal, state, regional, or otherwise) to monitor whether or not businesses are complying. So it’s up to people like Tom Mundy to sue in order to gain equal access.

I’M SOMEWHERE ELSE: [No Title]

First of all, why do people have to have recent documentation? Have there been many cases of developmental disabilities, like ASD, just disappearing? Do people with for example dyscalculia just suddenly get better, and then continue to try to get accommodations because they’re just a shitty person who wants to get a leg up on everyone else?

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.

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

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

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

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

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

Section 15 is the important one here:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dear Megan,

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

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

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

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

Thank you,

Anna P.
cc: Jack Layton

In The News: Toronto StarUPICBCGlobe & Mail

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.

Dear Imprudence: Just Be an Adult Already!

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 himhis 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.

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.

Recommended Reading for 06 September 2010

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

Galt Museum Blog: Making a Difference (Thanks to Penny from Disability Studies at Temple U. for the link!)

As I called her earlier this week to book a class, she related the following story to me.
For years, Blanche has told students about her limited vision and says that if they see her out and about in the community, they should come up to her and say oki (Blackfoot for “hi) and introduce themselves because she won’t be able to see them. In August this year Blanche was at Wal-Mart shopping with her son and grandson. As she was sitting there, a young girl walked past her, stopped and then walked towards her with her hand-outstretched. When she got in front of Blanche she said “oki” and then “oki, Museum Lady.” She was with her young brother and turned to him and said “this lady works at the Galt Museum. You and me and Mom and Dad should go and visit her there one day.”

Public News Service: Disability Activists: Dump the Pity

For 60 years, Jerry Lewis has hosted the Muscular Dystrophy Association annual Labor Day telethon. And for about 20 years, one of “Jerry’s Kids” has been at odds with him over the way the money is raised.

Mike Ervin appeared on the telethon when he was six years old. Now he’s a writer and disability rights activist who speaks out against the telethon because he claims it promotes stereotypes of people with disabilities as objects of pity.

Deafinitely Girly: Things my ears do instead of hear!

Isn’t it amazing how my ears are so utterly useless at their originally intended purpose, and instead able to tell me when someone loves or hates me, and when danger is nearby?

Did they miss the memo about actually having to hear, too?

Pipecleaner Dreams: Special Exposure Wednesdays

Well, for many reasons, Ronnie does not like DeafTalk at all. But, yet another interesting turn of events happened at the doctor’s office. Ronnie was on a standard size exam table. The DeafTalk machine was positioned in front of him. Only problem – the interpreter could only see Ronnie’s knees.

VictorVille Daily Press: Change in ADA regulations concerns local service-animal owners

That will all change next spring when service rats, cats, birds and some others will be disallowed under ADA amendments recently signed by U.S. Attorney General Eric Holder. The new rules will allow canines to continue to be used as seeing eye dogs and to alert seizures, but dogs will not be allowed to be used as service animals for emotional support. In recent years, dogs have helped bring normalcy to children with autism, soldiers returning from war with post traumatic stress disorder and more.

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.

Pondering Illicit Usage of Accessible Spaces…

I was driving back from dropping Kid off at school today, and I noticed that a delivery truck at the public library was using the accessible parking and accessible ramp as parking and loading dock space…

We have been having some conversations about accessible parking spaces and the policing of those spaces, and the blocking of those spaces and/or using of those spaces by persons who do not need them or have the right to them.

What thoughts, have you, gentle readers, on this particular use of these spaces? I have seen this in other places around our base, though I can’t recall if I have seen such a thing in other non-base places, because I have just begun to notice them (perhaps this is a product of some kind of privilege of mine). Even if it is early morning, should delivery vehicles be taking advantage of these spaces like this?

The “Gifted” — Who Needs Assistance When You Just Work Hard Enough?

Terry Goodkind’s Sword of Truth series, recommended to me by The Guy, my partner of several years now, whom I thought loved me, seemed innocuous enough. I thought it a simple fantasy series woven with a love story (“woven” here should read more like a nice cudgel to the head), which I was looking for. I thought it would be a nice epic fantasy, like Kushiel’s Dart, or something to sate my need for a good run of fantasy novels.

I however, didn’t heed Anna’s warning, when she asked me whywhyWHY would someone who loves me recommend a book series to me where a chicken is written in as EVIL personified (this is actually a simplification of the storyline, but it is true, nonetheless…), and as it turns out I think Anna may love me more. Who knows. Maybe I was hooked by the way the first two books ended with just the most convenient and precious heterocentric endings ever (there is one brief nod in the fourth book to homosexuality that seems it could be positive, but then it ends sadly, and seven books later there is no happy ending for this character).

The Sword of Truth series, however, does have many good qualities. It has several well written female characters whom I fell in love with, but, as I will write more about at my home blog, all seem to be written to be smitten with and to be in the service of the central protagonist, Richard Cypher/Rahl. They simply fall all over themselves to serve him, to love him, and to swear their lives to protect him with everything they have. Even if they were once evil or if they have tendencies to be evil (it’s just their way, you see, some women can’t help it), they somehow over come it because his presence is enough to ignite a spark to make them want to fight for their own lives him. I mean his cause.

But the Sword of Truth series isn’t just an innocent fantasy series. It isn’t even a series filled with tropes about women characters that I love that happens to beat me upside the head with forbidden romance and a love forbidden to procreate. It is a cautionary tale that warns of the evils of allowing communism to take over your life. This strange story of caring for your fellow man is bent into a monolithic monster of a machination that kills everything it touches. It simply asserts that you must live in misery for that is the only way that everyone can possibly meet the needs of every human evil, and makes the horrible and incorrect logical leap that religion is somehow tied to it, that this life is meaningless and that goodness can only be obtained in the hereafter. I can’t say I disagree with the atheistic themes, but really, a horse can only be beaten so many times before I glaze over and gloss over entire pages of exposition and soliloquy.

To be righteous in this world that Mr. Goodkind has created you must be willing and — key word alert here — able to fight for your own life and protect it with everything you have, up to and including killing those who would take it from you. With sword, with your bare hands, with magic if you are … gifted.

Yes, “gifted”. Being born with the ability to use and be touched by magic is considered a gift, which is not an uncommon theme in fantasy fiction and pop culture, but Goodkind takes it a step further, it seems to me. It is almost as though magic is another sense, an ability above and beyond that makes up for any other sense you may lack. Because if there is one thing that is all but lacking from this world that Mr. Goodkind has created, it is disability on the side of the bringers of good.

Even Adie, the “bone woman” (who oddly enough, having the speech pattern “I be” in the books*, is depicted as a non-white woman in the television series equivalent Legend of the Seeker even though that is now how she is described, but she is All Exotic! with Bones!), who had her vision stripped from her in her youth by a group of anti-magic zealots known as The Blood of the Fold by pouring bleach in her eyes, has learned to see. Her “gift” has enabled her to see. In fact, her vision, as is noted many times in the books, is often better than those who must rely on their ‘non-gifted’ vision.

I am going to drop the quotes from here on out, because it is getting tedious, and I think you get the point.

Adie never had to learn how to access the world around her. She never had to learn how to stumble around and feel with her other senses. She did, however, have to learn how to see with her magic, which made up for the vision which wasn’t there. This gave her the ability to be worthy, in the world that Goodkind created, to be able to fight for her life, and be allowed to live. People should just try harder, as Adie did. If you can’t get by in life, it is your own fault, and you are not contributing properly to the artwork that is the nobility of man!

You can understand why I was having a problem here.

Normally with pop-culture and fiction, there aren’t really absolutes, and I admit that there are multiple ways of interpreting things, but Goodkind has done a unique thing here: he has created a world of moral absolutes. This is right and this other things is wrong. What Richard Rahl (the protagonist) believes is right, and what he is against is wrong. There is clear good and evil, and the lines are rarely blurred. This use of a gift of magic allows people who otherwise have flaws to remain on the correct side of Richards moral compass. Richard, and Goodkind himself, could be described as Objectivists, which I think would clear up my frustrations. It should have set off alarms as soon as the philosophy lessons started to seep into my fantasy novel. Except OOPS! Mr. Goodkind says he is not a fantasy writer, merely a fiction writer he says (fuck you, fans!), so I have been wrong all along…

But Adie couldn’t be useful to the story, she couldn’t be the powerful and badass sorceress that she is depicted as being if she was indeed blind, amirite? Because if she was wasting all of her time trying to adapt to a world that was refusing to make accommodations for her she wouldn’t be able to fight for her individual life, or for Richard’s noble cause of laissez faire Capitalism freedom for all mankind (and I guess some of those womenfolk too).

The only time that her magical eyesight didn’t work was when she was faced with a woman, Jennsen, who was born without even a spark of the gift, called a “pristinely ungifted” person. She can not be touched by or interact with magic. Turns out, that Jennsen is Richard’s half sister, and her being ungifted is the bi-product of Richard’s gift. There can be only one! She has to be ungifted so that he can be gifted. It is very complicated, and there is an entire race of people on whom Adie’s magical eyesight doesn’t work! And Jennsen had to help Richard rally them up, because they were blind (oh the tropes and ableist language abound!) to evil, and their pacifist asses wouldn’t raise a finger to fight for their artwork of individual self interest.

I was just frustrated beyond all belief.

So if you want a nice stew of -ism and fuckery passed off as philosophy and disguised with characters that you will certainly love, I recommend Goodkind’s Sword of Truth series. All eleven (soon to be twelve!) books of it!

EDIT: 01 Sept: I forgot a couple of links when I finished this post. Apologies!

Signal Boost: Submissions Requested for the September Disability Blog Carnival

Astrid, of Astrid’s Journal, has agreed after much consideration to host the September edition of the Disability Blog Carnival, and we at FWD/Forward are enthusiastic to support that decision!

Astrid has chosen the theme “Identity”:

Think of it as broadly as you want. Posts relating to transforming identities, are of course especially welcome, as they honor both themes. Just a reminder that, even though this is a disability blog carnival, we honor intersectionality, so racial, ethnic, gender, sexual and any other type of identities also count, as long as the post is somewhat relevant to disability.

Comments can be submitted preferably here or else at the Disability Studies, Temple U. blog. The deadline for submissions will be Tuesday night, September 21 – Tuesday night your time, so don’t worry about my living in Europe. I hope to post the carnival on Friday, September 24 – whenever it suits me, my time.

We hope you will consider submitting something for the Carnival. Remember, the theme is a way to get you started, and we hope that you will interpret it to how it applies to your own situation, keeping the general spirit of intersectionality in mind.

Again, thanks to Astrid for taking this on, because without volunteers, there would be no Carnival!

Be sure, if you haven’t already, to check out the August edition of The Disability Carnival at Brilliant Mind, Broken Body, hosted by Kali.