Category Archives: activism

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

Tell The Discovery Network that their transphobia is unacceptable

Late last week, PinkyIsTheBrain on tumblr began a campaign to bring attention to the new Investigation Discovery show “Who the Bleep Did I Marry?”, which equates someone being trans* with being a serial killer, a con artist, or a bank robber.

[Note: If you’re unfamiliar with Tumblr, it can be a bit hard to navigate. “Conversations” or comments or follow-up tend to be nested.]

Transcript:

Music plays in background: “Love and marriage, love and marriage”

The video opens on a scene of a wedding in an idyllic location surrounded by trees with an arbor of flowers. The camera zooms in on the bride, who turns and says:

(Marriage officiant in the background): Join this man and this woman in holy matrimony.

First Bride: Five years from now, I’ll find out that he’s a bank robber.

The camera cuts to a different couple, walking under a portico with their backs to the camera. The bride turns to the camera and says “Serial murderer.”

A zoom in on another couple, standing like they are being photographed with their families.
Third Bride (loud whisper): Russian spy!

Another couple, cutting a cake.
Fourth Bride: Cheater. With three other wives.

Another couple, surrounded by a crowd, the bride sitting on a chair while her husband kneels to pull off her garter.
Fifth Bride: And he’s a… a she.

(Gasps)

(Kissing noise.)

We cut back to the original couple, kissing at the altar.

The closing shot is of a fancy black car driving away, trailing ribbons, tin cans, and toilet paper. ‘Who the (bleep) did I marry’ is chalked on the back window.

Marriage Officiant (sounding disgusted): Who the bleed did you marry?

Voiceover: Who the bleep did I marry? All new [episodes?], only on Investigation Discovery.

This is not just a ridiculous comparison, it’s a pretty damned offensive one that equates being trans* with being a serial killer – and once again equates being trans* with lying, which is the same argument that murderers make with they murder trans* people.

FuckYeahFTM looked up the contact information for the Discovery Network, encouraging people to get in touch and point out how bloody offensive and shitty this is:

Here’s more info about the show:

Who The Bleep? [Opens with sound & Video]

The other episodes they have include: Married to An Embezzler, The Biggest Con, Married to a Spy, Married to A Bank Robber

And they are including marrying a transman, or in their words “He is actually a She” on that level, with criminals and murderers.

Discovery doesn’t actually make it easy to contact them with concerns (I had to use a search engine to find the Contact page because it wasn’t anywhere on the Who The Bleep? page), so here’s how I did it:

32. How can I contact you with programming comments or questions?
We welcome your e-mail comments and questions, which you can send to us by clicking here.

This is the most efficient way to contact us. Comments or questions directed to anyone else at Discovery Communications will be forwarded to Viewer Relations, which means it will take us longer to follow up.

You can also write to us at:

Discovery Communications
Viewer Relations
One Discovery Place
5th Floor
Silver Spring, MD 20910

There is actually a lot of “required information” before Discovery will let you contact them. They want your age, your name, what network you’re writing about (Investigation Discovery in this case), post code, Cable provider, program time, and “information needed” (along with several other pieces of non-required information) before you can fill in your comment. I believe it’s five steps before you can tell them what your concern is, the site is very slow (at least for me), and I have no idea how accessible it is. (It does not like my computer at all)

However, reaching out and making it clear to Discovery that this stuff is not okay, that being trans* is not a crime, is not lying, and is not the equivalent of being a “Russian Spy” or a “Bank Robber”, is important, and I hope as many of you as possible will contact them and make that clear.

This is what I wrote, if you are looking for a template:

Hello Discovery Network,

I am disgusted and appalled at your decision to equate being a trans man with being a criminal, a spy, or a murderer. A trans man is not “really a she”. He is a man who married a woman. The decision of your network to “out” someone like this is especially dangerous, as many trans people are murdered for allegedly “faking” or “lying” or otherwise “cheating” their sexual partners.

I hope you will reconsider your decision to air such an exploitive, dangerous, and abusive program.

Again, here is Discovery’s Contact Form. I emailed them last week and have so far received only a form letter, but if we overwhelm them with numbers, surely they have to pay attention, right?

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.

Signal Boost: Help Mia Mingus & CripChick!

To the Other Side of Dreaming: Finding Housing & Putting Disability Justice Into Practice

We’re reaching out across our bi-coastal networks to move to the Bay, specifically Berkeley because of the level of access that can be found there for disabled folks. This is a huge, complicated and multidimensional decision that we have struggled with and we will be writing more about it to you, our loved ones and family, in the coming months.

But right now we need you. We need help finding a place to live and creating a community careshift collective.

Check for more information about what Mia Mingus & Ms Crip Chick need at Leaving Evidence (mirrored at CripChick’s blog), and also check out the Book Sale at thaura zine distro: Revolutionary Love is More Than a Catch Phrase. There appears also to be an etsy sale in the works, so please keep an eye out for that as well.

CripChick also has a list of books she’s giving away, as their new digs won’t have room for all the books (woe).

For myself, I have only recently become aware of the amazing work that Mia Mingus does, but what I’ve read at her blog, Leaving Evidence, from hearing about her work this year at the Allied Media Conference, I am blown away by her passion, her drive, and her love. CripChick’s work I’m more familiar with, especially her work with young people with disabilities, as a youth organizer and a radical woman of color. Both of their blogs are outstanding, and as well they are also both heavily involved in community organizing and disability solidarity.

I know things are tight all over, but much of the help they need is not just in money, but in support and information. Check out what they need!

Musings: Is Existing as a PWD a form of Free Speech?

These are some things I’ve been thinking about, but haven’t yet figured out where this train of thought is leading, or what it might connect to, or what conclusions I might end up with. I’m writing this to see if virtually talking it out can help me think through it further, or hoping it will spark some ideas or brilliance in one of you! This is not meant to be an authoritative statement on these issues and there may be glaring issues I’m overlooking! I’m just hoping to have a good discussion about it.

Recently, the federal circuit court in California heard a case about whether the city of Hermosa Beach could ban tattoo shops entirely. The plaintiff – a man who wanted to open a tattoo shop in the city – argued that the ban was an impermissible  restriction of his free speech rights. The court wrote a long decision (pdf) considering not whether having a tattoo was something protected by the First Amendment, but whether the actual act of tattooing someone was conduct with sufficient expressive content to be considered as speech. So the court was thinking about whether the act of giving someone a tattoo counts as speech – if the tattoo artist is the equivalent of a painter or a photographer and adding artistic judgment and content to the representation, or if they are more like a computer printer printing out text or images designed by someone else.

This meant the court spent a lot of time discussing the idea of “expressive conduct” – behavior that isn’t actually “speech” in that the person is not speaking words, but is behaving in a way that communicates a message or idea and so is protected the same way that speech is. In the United States, the Supreme Court has already considered a whole bunch of activities and determined that they should be protected the same way that speech is. For example, burning the United States flag, wearing a black armband to protest the Vietnam War, and nude dancing are all activities that aren’t directly speech, but convey a statement or message and so are protected the same way that speech is.

I started thinking about the idea of “expressive conduct” – behavior that conveys a message or statement – and was immediately struck by how existence as a person with a disability could be seen as expressive conduct. Using a wheelchair or cane or braces while out in public seems to me to express a statement: “I am a person with a disability, I exist, I share public space with you.” This is, as we’ve discussed here at FWD and many others have expressed, a radical statement, a powerful message. To me, it seems equivalent to the message expressed by wearing a black armband to protest a war – it is a political statement of resistance.

The law of expressive conduct recognizes that not every instance of the behavior is communicating an expressive message. If, for example, I had mini American flags as part of a table decoration and one fell into a candle and started burning while I wasn’t paying attention, that flag burning would not be sending the same message as intentionally burning a flag at an anti-war demonstration. My accidental flag burning would not be sending a message and so would not be protected as speech. Similarly, a PWD alone in their apartment likely isn’t sending any message or statement with the mere fact of their existence – they might be typing or painting or speaking and sending a message that way, but not simply by existing. So PWDs wouldn’t automatically “become” speech – only when their existence communicates a message.

I’m not entirely sure where that gets us. In First Amendment law, when conduct is considered speech because of its expressive content, it is protected by the First Amendment, which means that the government cannot restrict it without passing certain protective tests. So theoretically, arguing that disability is a form of speech would let PWDs argue that governmental restrictions on their presence are in fact restrictions on speech. But since the First Amendment only protects speech from restriction by the government, not from private businesses or in private life, I’m not sure that would add any protections that the Americans with Disabilities Act doesn’t already provide. So I’m not sure this analogy would be helpful in extending the existing legal rights of PWD.

I’m also unsure how people with invisible illnesses (like myself) fit into this analysis. My being in public does not automatically communicate to people that I exist as a PWD, because my disability status is not apparent from looking at me. So I don’t start communicating this message until I affirmatively disclose or mark my disability status.

I also wonder if this forcibly ascribes expression or speech to PWDs who do not think they are or want to express that radical message.

I don’t really have a strong conclusion to any of this – I’m still rolling it around in my head to see what if anything it turns into. But I like the idea of acknowledging that when PWDs with visible disabilities are engaged in sending a message as powerful as burning a flag.

What do you think? It’s ok if you don’t have a clear position one way or the other but just have thoughts or reactions!

Today in Journalism: Arnieville

Back in May, I wrote about the rampant slashing of the sections of California’s budget pertaining to disability services. abby jean has also written about how California structures social assistance programs and their funding.  These are issues seen not just in California, but across the United States, where states are struggling to come up with ways to provide services while facing falling revenues and funding shortfalls in every direction. The most vulnerable populations in many states are the first to face cuts, and some of those people have decided to fight back.

Which brings us to Arnieville1. In June, disability rights activists occupied a traffic island in Berkeley to fight budget cuts. The Arnieville protests continued off and on throughout the summer and protesters led demonstrations in other areas of the state as well, leading to things like arrests in Sacramento.

Arnieville put disability rights issues front and center. People passing by couldn’t help but notice a large encampment of people with disabilities, and their numerous signs, protesting policy and budget cuts. It was a very in your face protest, and it makes sense that such a thing would take place in Berkeley, a city long known for its active disability community and disability rights activism.

Yet, if you rely on mainstream media for your news, you wouldn’t know about Arnieville. A search on the website of the San Francisco Chronicle, one of the largest Bay Area newspapers, for ‘Arnieville’ returns no results. Likewise with the Press Democrat, a smaller regional paper that still manages to find time to cover other local news. The Los Angeles Times, an award-winning California newspaper with a long history of investigative journalism and coverage of both disability issues and the California budget, also has absolutely no coverage of Arnieville.

If you don’t follow the disability community in the Bay Area closely, you probably wouldn’t know about Arnieville. Unless you happened to read independent media like IndyBay, The San Francisco Bay View, The Berkeley Daily Planet, or New American Media. Coverage in the East Bay Express, SF Weekly, and San Francisco Bay Guardian, three farily large independent media outlets? Nil. Zero results. Coverage on radio and television news is a little more difficult to track as I can’t search through months of broadcasts as conveniently as I can through months of print media, but I suspect coverage has been relatively minimal, if not nonexistent, with the exception of KPFA in Berkeley.

Arnieville is news. People with disabilities camping out in a traffic island to protest budget cuts, to demand independence from institutionalisation, to challenge social policy, is news. Yet, most of California’s media is completely ignoring the Arnieville protest, let alone its implications. This is typical. Disability issues are rarely covered in the media and when they are, it’s usually in a very patronising, frustrating kind of way.  An article on budget cuts, for example, might focus on interviewing parents of children with disabilities instead of interviewing the children themselves, or interviewing adults with disabilities.

Activists from other movements are profiled in the news in California. Protests demanding everything from clean energy to better accountability in police brutality cases are covered, extensively, as they should be. Because protest is one of many legitimate forms of communication with the government, and newspapers have an obligation, and a mission, to report on issues of interest to citizens. Disability rights is an issue of interest to many California citizens, not just people with disabilities, yet, the media seems very disinterested in covering it.

What about Arnieville isn’t newsworthy? The Los Angeles Times had no problems covering a tent city in Sacramento in March of 2009. A whole series of articles was run, including profiles of members of the encampment and a number of very strongly written editorials about social responsibility, budget crises, and public shaming. But a disability rights protest in the form of an encampment on public land? Not even a stray word.

One of the reasons our lack of visibility in the media makes me angry is that the general population is often unaware of the issues that affect us, and of the long history associated with many of those issues. It’s extremely hard to fight social attitudes when the media either ignores us or reinforces its social attitudes with its coverage, instead of debunking those attitudes through news stories. Arnieville conflicts with a lot of beliefs about people with disabilities, and I suspect that’s part of the reason why it hasn’t been covered in the media, because it threatens established social attitudes.

To cover Arnieville might suggest that the protesters have a legitimate grief and have something important to say. It might even hint that some people with disabilities are not happy with the current state of social services. That people with disabilities do not want to be institutionalised and have the capacity to live independently. That people with disabilities have a right to live, have a right to participate in governance, have a right to voice their objections to policy that harms them. These are scary, scary things to many nondisabled people, which is why they are being swept under the carpet.

  1. A reference to encampments established during the Great Depression by people who lost everything, nicknamed ‘Hoovervilles’ after President Herbert Hoover, blamed for the policies that led to the catastrophic economic collapse; in this case, the camps are named for Governor Arnold Schwarzenegger of California.

“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.

Mental Health and the Gulf Oil Spill

We are still trying to get our heads around the massive and far-reaching effects of the massive oil spill along the Gulf Coast of the United States. It’s clearly too soon for anyone to even predict what all the effects are going to be, much less estimate the severity or significance of those effects. The spill will affect the environment, the local and national economy, employment, tourism, where people live, even seafood supplies for restaurants. It is also very clear that there will long-term, significant health effects from the spill and the toxic dispersants used by BP to address oil in the ocean.

Putting all of those effects aside, I want to focus on the mental health effects of the spill. Obviously, we are still very close in time to the three month period before July 15, 2010, when an estimated 3 to 5 million barrels of oil spilled into the Gulf of Mexico, so quantifying or understanding the mental health effects is difficult. An initial report from Louisiana State University found that nearly 60% of the 925 coastal residents they interviewed “said they were almost constantly worried by the oil spill.” Another recent study done by the Columbia University Mailman School of Public Health (pdf) gives us some preliminary data on the impact of the spill on the mental health of the coastal population, focusing specifically on the mental health of children. And it is, frankly, not very good news.

The survey was limited to people who live within 10 miles or a 30 minute drive from the coastline in Louisiana and Mississippi. Between 40% and 50% of people had had direct exposure to the oil spill, either by being involved in the cleanup, coming in direct contact with spilled oil or cleanup activities, or who had lost or damaged property as a result of the spill. Excluding children who had emotional or behavioral problems prior to the spill, about 20% of the children in the sample were experiencing mental health problems after the spill. The researches estimate that only about 15-20% of these mental health problems were associated with direct exposure to the spill and cleanup activities, meaning that the remaining 80-85% of mental health problems were among those without direct exposure. Having direct exposure made both adults and kids about twice as likely to report mental health symptoms.

It will be utterly unsurprising to most readers of FWD to learn that mental health problems were related to the race and income of households. Black families were significantly more likely to have mental health problems among both adults and children. Similarly, children in households with incomes less than $25,000 were nearly three times as likely to have mental health problems than children in households with income over $75,000.

The study suggests that these mental health concerns are substantially related to parental concern and uncertainty about remaining in the Gulf Coast area. Households that indicated the family may move away from the area were twice as likely to have a kid with mental health symptoms. As the study says, “the human impact of the oil spill in the Gulf Coast’s “social ecology,” that of its residents, communities, and social networks, may only be accelerated by such uncertainty.”

One woman interviewed by the study told the New York Times how the spill was contributing to mental health problems for her family:

Shannon Drury, a mother of four in Venice, La., said her husband, a commercial fisherman, had been working for BP but was owed six weeks’ pay. For a time after the spill, Ms. Drury was forced to find work as a houseboat cleaner, coming home exhausted at night. Ms. Drury’s 11-year-old daughter has grown more insecure, she said. Another child has developed a mysterious rash that Ms. Drury suspects is infected. Tensions over money, she said, reminded her of the warning from a visiting speaker from Alaska, who said the divorce rate there had skyrocketed after the Exxon Valdez disaster. “I realize what the woman was talking about now, because it puts different strains on your family from what you’ve been used to,” Ms. Drury said.

This kind of mounting pressure is similar to the National Institute of Mental Health’s understanding of how disasters like the oil spill contribute to mental health problems. As NIMH Dr. Farris Tuma explains:

One of the tragedies that we have seen over and over again after large scale disasters, is really a spiraling downward of people who were, maybe, managing to keep their lives together, to keep their emotions and behavioral problems under control. But with some additional stress and some additional disorganization in their community- really became quite disabled by their anxiety, depression, psychosis.

Despite the magnitude of this problem, the current resources available for these families and communities are very limited. One of the women interviewed in the study told the New York Times the only counseling resources to which she had access were a new program started by her church to respond to the spill. All of this suggests that BP should be held responsible for assisting these families with their mental health symptoms resulting from the spill. Unfortunately – and again, unsurprisingly – Kenneth Feinberg, the independent “claims czar” who will decide who gets compensated from BP’s compensation fund, said the fund was not likely to pay damages for mental illness and distress alleged to be caused by the spill.

“If you start compensating purely mental anguish without a physical injury — anxiety, stress — we’ll be getting millions of claims from people watching television,” Feinberg said. “You have to draw the line somewhere. I think it would be highly unlikely that we would compensate mental damage, alleged damage, without a signature physical injury as well.”

Please excuse me while I beat my head against the desk for about an hour or so. The implication that compensating people who have experienced the kind of mental anguish and uncertainty described above would open the door to an endless stream of claims from people who felt mildly upset when viewing television coverage of the spill is so condescending, so insulting, so wildly inappropriate that I’m having trouble responding coherently. This kind of attitude is offensive on a broad level – it minimizes the significant impact of mental health problems by equating them to obviously silly and spurious claims and implies that only physical health problems are “real” problems worth compensating.

But this attitude is even more harmful for Gulf Coast residents. This is compensation that people need in order to seek treatment and assistance with their mental health problems that they are otherwise extremely unlikely to be able to afford or obtain, so denying these claims means they’ll be left to cobble together whatever meager resources they can. As the study discusses, these are not isolated people who live in a vacuum, but will have real and lasting effects on the “social ecology” of the region, affecting entire communities and regions. And the people most likely to be left without any help are those who are already more vulnerable because of their race and their poverty. In short, administering the fund this way and denying these claims will not only perpetuate but actually exacerbate the underlying inequalities in the region, punishing poor children of color for the stigmatizing beliefs held by Mr. Feinberg.

This is especially galling as there have already been suicides linked directly to mental health problems stemming from the oil spill. William Kruse, who had two boats he expected to use for tourism over the summer, was forced to work cleanup for BP and became increasingly depressed and despondent, eventually killing himself in late June. It is almost certain that there have been more suicides that have not received national news coverage. It is unclear whether Mr. Feinberg would consider a gunshot wound to the head a physical injury sufficient to justify compensation of the underlying mental health problem.

Thankfully, the state governments are reaching out to BP for help in this area. Mississippi, Alabama, and Florida have all submitted requests to BP for money to provide mental health services to affected residents. Louisiana has requested $10 million specifically for emergency mental health services to respond to the crisis. (BP has not yet responded to these claims.) We can only hope that these states and the Congressional members who have oversight over the BP compensation fund will continue fighting so that the mental health needs of affected residents can be met.

Thanks to Karen Whyte for the suggestion for this post, as well as for many of the links and materials cited here.

Vulnerability Indexes, Homelessness, and Disability

(Note: this originally appeared in a modified form on my tumblr.)

Vulnerability indexing is a new trend in homelessness services. It started in LA and NYC but is now being used a bunch of cities and localities of all sizes around the country. Instead of traditional outreach services, these projects use a “vulnerability index” survey to collect data from street-based homeless folks (rather than people in shelters, living in cars, doubled up on couches, etc). The data is then used to rank the homeless people, in order, by their “vulnerability,” or likelihood of dying within the next 12 months if they remain on the street.
That ranked vulnerability list is then used as a priority list to provide the people with services, starting with housing.

In providing housing and services, these programs use a “housing first” model, which means that unlike the vast majority of homeless housing services, individuals are NOT required to be clean of drugs/alcohol or engaged in mental health services prior to moving in. Once they move in, they’re provided with all the supportive services they want, including substance abuse treatment, mental health treatment, education and job training and placement assistance, etc.

I strongly support these programs and have been very excited to see them gaining traction in LA. (we have project 50 in downtown LA, project 30 in the San Fernando Valley, and others pending right now.) I also think these programs are of special interest from a disability perspective because of the extremely high prevalence rates of mental and physical disabilities among the long-term chronic homeless, and the way these disabilities make it difficult, if not impossible, for this group of homeless people to move towards stable permanent housing.

Here are some of the reasons I think this approach makes a lot of sense:

1. It targets the population that needs it the most, re-opens discussions about serving the chronically homeless
These projects target a subset of the homeless population – the chronically homeless. This group is defined as people who have been continuously homeless for at least a year. This is a minority of the overall homeless community (about 23% of all homeless), as most people cycle in and out of homelessness in periods of 3 months or so. The chronically homeless are generally single adults, not families, and generally have some kind of substance abuse issue and/or mental disability and/or physical disability. Most policy analysts believe that nearly every chronically homeless person has either a mental or physical disability.

This population is considered extremely difficult to serve, as lots have tried to engage with services in the past and not found it useful, so are considered “service resistant.” This is a nice way to say that most people and agencies have pretty much given up on them and don’t have any hope of bringing them into services, much less into stable housing. This is also a nice way to say that these homeless folks have correctly figured out that most homeless services aren’t appropriate or beneficial for them, so there’s little point in trying to engage with service organizations. This is partly because homeless services are not really set up for people with disabilities – getting necessary accommodations in a shelter is enormously difficult because of the already extremely limited resources available. If you have PTSD and need a door that locks in order to sleep, a shelter is not for you. If you have a service animal, shelters are not for you. If you need even a minimal level of nursing or medical care, shelters are not for you. (Not that the streets are better at accommodating disabilities.)

These chronically homeless people are, unfortunately but frankly, likely to die. the vulnerability index looks at factors that “place them at heightened risk of mortality,” including 3 or more hospitalizations or ER visits in the last year, aged 60 or above, cirrhosis of the liver or end stage renal disease, HIV+ or AIDS, or co-occurring psychiatric, substance abuse, and chronic medical conditions (tri-morbidity). When this tool has been used in communities, the most vulnerable person identified by the tool usually has all of those risk factors and has been homeless for 20+ years. Can you imagine how difficult it would be for a 62 year old man who is HIV+ and has a physical and mental disability and an active substance abuse problem to enter a shelter, especially after over 20 years of street homelessness?

Traditionally, this group of the chronically homeless is a group that people have given up on. Not just the public, but even homeless service providers. But the first iteration of this program, in the Times Square area of NYC, has produced before and after stories that are flooring. A woman who lived on the streets for 20+ years as a heroin addict is now housed and working as the concessions manager at the movie theater in Times Square. Looking at the before and after pictures seemed like she’d moved backwards in time – she looked 20 years younger. These are the people who we walk by on the street and feel like they’re beyond help and beyond hope. We just don’t think people can come back from that – and these programs are proving that assumption to be absolutely wrong.

Another benefit of focusing on the most vulnerable folks is that it communicates that same message – you are not beyond help or hope, there are programs that can provide meaningful and beneficial assistance – to the homeless community itself. If folks see that the agency promised housing to someone with a substance abuse disorder, a mental disability, and 20+ years on the street, and then delivered on that promise, they’ll be motivated to participate with the agency and trust them in a way they wouldn’t trust the shelters or outreach teams that hadn’t housed that guy in the past. These programs usually see a “tipping point” once the first few, most vulnerable, people are housed – then the rest of the community believes in the promise of potential housing and is motivated to cooperate with the service agency.

2. These programs make economic sense.
These targeted programs are usually seen as an alternative to simply ignoring the homeless and continuing to not spend city and county funds on them. Because there are not a lot of homeless services or programs targeting this group, the perception is that we are currently spending zero dollars on them, and any targeted program will be a dramatic increase in funds directed to the chronically homeless. This could not be more inaccurate. Actually, this group is consuming an astounding amount of public funds, through county health programs, police and jail funding, and public benefits such as food stamps or general relief funds. A recent study by the Economic Roundtable here in LA found that these most vulnerable folks are consuming over $8,000 in county funds PER MONTH, through multiple ER visits, jail time for quality of life infractions, and health care services received in jail. When these folks are moved into housing – even fully subsidized funding with inclusive supportive services – it’s a net savings for the government.

So this popular conception that we’re not already spending a bundle on these chronically homeless folks is simply inaccurate. We, as city and county governments, are already spending an enormous amount of county health funds, justice system funds, and social system funds on this group, with no discernible improvement in their quality of life or life expectancy. (This New Yorker article is a great discussion of how these costs can mount up for a single homeless individual.)

I know that cost savings is likely not the most important aspect of these programs for this audience, but these economic arguments are extremely powerful in persuading localities who do not understand why they would benefit from targeting funds and assistance at the chronically homeless.

3. The overall economic effects of the project help those homeless who aren’t directly targeted.
The economic benefits of these programs mean that there will likely be additional homeless service dollars available for use at other places in the homeless continuum of care – meaning that the program could generate benefits for the non-chronically homeless as well. This is much needed. Currently, in LA, it’s really hard to get into a homeless shelter. that’s because the “emergency” homeless shelters – where you’re supposed to stay for 30-90 days before moving into a “transitional” shelter – are backed up. Because all the transitional shelters are full. Because there’s no permanent housing available, so there’s nowhere to transition to from the transitional shelter. So the transitional shelter is serving as permanent housing and the emergency shelter as transitional shelter and the folks who need emergency shelter … sleep in their cars, or on the floor of a friend’s apartment. This system could benefit from some more cash to build permanent housing – money that might be available were we able to reduce the significant existing county expenditures on the chronically homeless.

4. Housing First and other harm reduction policies make sense.
Currently, a lot of housing placements require that the person moving in be clean and sober and, if they have a mental disability, be actively engaged in mental health treatment services. As you can imagine, this turns into a lot of chicken and egg problems. If you are a homeless person living in LA’s Skid Row, which is overrun with illegal drugs and alcohol, and have no money to afford rehab or treatment, you are never going to be eligible for that housing, even if you actively want to stop using. You don’t have anything to lose while living on the street – even going to jail gets you a bed and some food – so there’s absolutely no incentive to stop using. If you’re likely to die within 6 to 12 months, it’s likely that being high during the interim will be more pleasant than being sober.

If you’re placed in an apartment, though, you quickly learn that ongoing abuse is going to cause financial problems in affording the apartment and social problems in not disturbing other neighbors. There’s also an incentive – you don’t want to lose the apartment. The programs have found that people are motivated to enter treatment when receiving housing, even if it’s not a requirement of maintaining housing. There have been similar results with mental health treatment.

Even aside from the incentive effects, these Housing First programs are humane. I know a bunch of people who wouldn’t be able to get apartments if they had to show clean drug tests to get the apartment and to maintain tenancy, but they’re allowed to do that because they have money.

SO, in short: even though it sometimes feels a bit squicky to be ordering homeless folks in terms of likeliness to die and priority for housing, these programs make a lot of sense conceptually and have had amazing effects on the ground. Of the 50 most vulnerable in downtown LA, all of which had disabilities of some kind, 41 are currently in housing. I don’t see how this could have been done any other way.

US Action Item: Encourage the Senate to Adopt HR 3101

In June, I wrote an action item asking readers to support The Twenty First Century Video and Telecommunications Accessibility Act. I’m pleased to report that the House version of the bill, HR 3101, just passed, thanks to a lot of work by disability advocates (and a few FWD readers)! Now, it’s the Senate’s turn. The Senate has its own version of the bill, and we are faced with either Senate passage of their version and then reconciliation (writing a bill that both chambers will agree to) or Senate adoption and passage of HR 3101, at which point the bill can be sent to the White House for the President to sign.

The Senate version, S 3304, is not as strong as HR 3101. Neither version requires captioning for web-only content, but HR 3101 requires reporting on captioning of content generated for the web. This opens the door to possible regulatory action in the future to mandate Internet captions. Advocates, including Marlee Matlin, want to see the Senate adopting HR 3101, the stronger bill, to pave the way to better captioning for online content.

I’m writing today to ask those of you in the United States to write your Senators and ask them to support Senate adoption and passage of HR 3101. If your Senator is on the Committee for Commerce, Science, and Transportation, so much the better! The Senate could be voting as early as this week, so consider this  a time-sensitive issue.

You can follow the push for better Internet captions at Caption Action 2, which also has a Facebook community you can join.

Below the fold, a draft letter you can send to your Senator. I highly encourage you to personalise it a bit if you can, because personalised letters are weighted more heavily.

Continue reading US Action Item: Encourage the Senate to Adopt HR 3101