Category Archives: events

“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.

Signal Boost: The Attitude Test discusses Screen Readers TODAY

Via email

On this week’s Attitude Test, we will, as usual take a look at the news and put our distinctive slant thereon, all ready for you to disagree with if you want to.

The main subject this week concerns screenreaders.

The simple question, though with, I feel some complicated answers is: are we witnessing the demise of the stand-alone screenreader such as JAWS and Window-Eyes? With Apple now putting a screenreader in many of their products as a standard part of their system, is this the way things will go.

Is there much left for the major screenreader manufacturers to do? A new version of JAWS is coming soon, but most of what has been done in this new version are fixes to existing problems. Could it be that Microsoft may well decide to incorporate one of the major screenreaders into their own products?

We want your views on this.

You can interact with the program in several ways: either by skype at
the.global.voice, by email and msn at yourvoice@theglobalvoice.info, or by using one of our three phone numbers you can find on our website:
The Global Voice.

That’s the Attitude Test live on Sunday at 18:00 UTC, that’s 2 pm Eastern, 11 am Pacific in the US, 7 pm in the UK and 8 pm in Central Europe

Let your voice be heard on the Attitude Test, on the one and only Global Voice.

Weekly Events Roundup

As always, these events are not endorsed by us in any way, and unfortunately I can’t tell you any more about them than what is at the applicable links.

Also, things are a little wonky on my end because of Hurricane Earl, but both Don and I are fine, having made it back to our apartment during a lull in the storm. But I’m a bit scattered right now!

Memorial Events (All in North America) – Conferences (All in Europe) – Art Show/Call for Submissions of Art (All in North America)

Memorial Events:

Canada:

Unveiling Ceremony
Memorial Wall Plaques Dedicated to Patient Labourers Past

This year marks the 150th anniversary of the oldest part of the patient built boundary wall, constructed in 1860, which stands on the south side of the Centre for Addiction and Mental Health (CAMH) at 1001 Queen Street West, Toronto. These patient-built walls, along with the 1888-89 walls on the east and west sides, are a testament to the abilities of people whose unpaid labour was central to the operation of asylums in the Province of Ontario during the 19th & 20th centuries.

Join us as we unveil a series of nine memorial plaques in remembrance.

Saturday, September 25, 2010 at 1:00 p.m.
Corner of Queen Street West and Shaw Street.

A tour of the wall and all nine plaques will follow the dedication ceremony.

Sponsored by Psychiatric Survivor Archives, Toronto (PSAT), CAMH,
and the generous support of many community donors.

For more information or media inquiries, please call 416-595-6015; 416-661-9975. (via NEADS)

Conferences:

United Kingdom

The Lancaster Disability Studies Conference is taking place 7-9th September 2010. Over 150 presenters will be giving papers and showing posters.

There will be a live webcast of the keynote sessions which can be can be viewed at http://www.lancs.ac.uk/iss/digital/disability/
The recordings will also be made available on the conference website afterwards http://www.lancs.ac.uk/disabilityconference/

Tuesday 7 September 2010
11.30-12.30 Plenary – Caroline Gooding
17.30-18.30 Plenary – Liz Crow

Wednesday 8 September 2010
9.30-10.30 Plenary – Ruth Gould
13.30-14.30 Plenary – Adolf Ratzka

Thursday 9 September 2010
11.30-12.30 Plenary – Alana Officer

Details about the plenary talks and the full book of abstracts are available on the conference website.

Registration is open for the Currents in the Mainstream conference:

The MeCCSA Disability Studies Network presents a conference on current images of disability at De Montfort University, Leicester on the 22nd September from 9-30/10.00 until 4-30. This day conference aims to re-visit and re-evaluate the complex issues at stake in contemporary representations of disability and impairment from a variety of critical perspectives, investigating both continuities and new trends in representing disability.

Presenters include Paul Darke, Debs Williams and Sonali Shah.Papers
/presentations will include work on televison, film, journalism and
performance. For more details please see Currents in the Mainstream

Amsterdam:

Conference: ‘Diversity in Quality of Life’
December 2-4 2010
VU University, Amsterdam

Disability Studies in Nederland wants to celebrate its first anniversary and the start of its research program with an international conference in cooperation with VU University, which supports this event as part of the lustrum agenda Freedom and Responsibility, on occasion of its 130th birthday. To promote the disability studies approach in The Netherlands the conference will focus on a key concept in mainstream academic approaches to disability, namely ‘quality of life’. It raises the question of how this concept can be used in a disability studies perspective.

Slovenia:

ENIL invites you to an international conference co-organized with YHD (Association for the culture and theory of handicap), 8 & 9 September 2010, Ljlubljana, Slovenia

The conference will be implemented under the
EDFEO programme for the year 2010 (European driving force for equal opportunities), within which YHD is coordinating the Eastern European group.

Location: City Hotel, Dalmatinova 15, 1000 Ljubljana, Slovenia.

There’s more information at the ENIL website (scroll down).

Art Show:

United State

Mad Gifts: An Art Show
What:

An exhibition of inspired artwork by Icaristas throughout the Northeast; a celebration of our visionary talents and community; a fundraiser; and an opportunity to share TIP with others.

When:

November 5, 2010 – December 7, 2010

Opening Reception: Friday, November 5, 7PM-9PM

DEADLINE FOR SUBMISSIONS: October 1

Feel free to keep us updated on events!

Betty Anne Gagnon and Murder Most Foul

Content note: This post includes discussions of the murder and abuse of people with disabilities.

Betty Anne Gagnon was 48 years old when she was found curled up in the front seat of a pickup truck in the parking lot of a petrol station near Edmonton, Canada, in November 2009. Her face was heavily bruised and her body bore clear evidence of abuse.

She was dead. The coroner determined that blunt force trauma to the head was the likely cause of death. That was, in the literal sense, the cause of death, but what actually caused her death was ableism.

Betty had developmental disabilities. For 14 years, she lived independently with a caregiver in Calgary, but later moved in with her sister and brother-in-law. During the almost five year time period before her death, she was confined in a cage made of chicken wire, and forced to sleep in a tent smeared with her own feces. Or locked in a dog run in the yard. Or in a decommissioned school bus. Her ‘caregivers’ openly admitted this at the inquest into her death, where they described leaving her in the unheated bus with no toilet facilities, and they talked about the events in the hours before she was left to die in a parking lot, about how she was cold and struggled to breathe. Oh, but they called emergency services for help after they dumped her.

They are being charged with manslaughter, ‘unlawful’ confinement, and assault. I understand how the law works, and how the statutes are organised, and I understand why they cannot be charged with murder, but this was murder. It was murder after years of dehumanisation and abuse. It was murder. It was the complete and utter, total devaluation of human life.

Last week, a vigil was held to honour her, and to draw attention to the abuse of people with disabilities. As attendees at the vigil pointed out, caregiver abuse is common, it’s not commonly addressed, and sometimes it ends in cases like this.

The thing about cases like this is that they are endless. Every week, it seems, I am reading about another person with disabilities being murdered by ‘caregivers,’ and these cases drop off the radar very quickly, but I remember them. We remember them. We also remember the narrative that surrounds most of these cases, where we are reminded that caring for people with disabilities is such a burden and there must have been circumstances involved that we don’t know about, because how could we, it’s so hard to be a caregiver.

Of course, none of us are caregivers. It’s either/or, right? You are either a person with disabilities, or you are a caregiver.

I always thought, personally, that it’s pretty hard to dehumanise people, but apparently the media has no problem doing that. Very rarely do cases like this stress that there was a person involved, a human being, who is now dead. Dead because of social attitudes about the value of disabled lives, dead because of narratives reinforcing latitude in circumstances, dead because no one reported the abuse or because if someone did, the report wasn’t taken seriously. Dead because, sometimes, the media treats murderous ‘caregivers’ like misunderstood heroes.

It is sickening, and I mean that in a physical sense, to read article after article about people killing people like me, and getting away with it. And it is enraging to see how little coverage these cases get, a throwaway that happened to pop up when I happened to look at the screen, and would have missed otherwise. How many other devalued lives have been snuffed out without any awareness on the media’s part at all?

Betty Anne Gagnon was a human being. She had feelings, memories, experiences, and life. And that was taken from her because of her disabilities, because people determined that she wasn’t a person, and therefore didn’t need even the minimum standard of care you would give to a human being: A bed, a warm room, food, a place to use the toilet. She was locked up in an outdoor dog run in Alberta in the winter.

The media reported on the vigil, but didn’t really provide hard statistical information about the abuse and murder of people with disabilities, beyond making vague references to the fact that we are more likely to experience abuse. Many of those articles were specifically framed to focus on caregivers, not actual people with disabilities. Caregivers to ‘speak for those who can’t,’ reminding us, yet again, that those of us who cannot communicate in a way that satisfies others are deemed ‘silent.’

When we talk about ableism, about social attitudes, this is what we are talking about. We are talking about the fact that Betty’s life was deemed worthless because of her disabilities, and that every mainstream narrative reinforced that, right down to the complete lack of interest in her death on the part of anyone other than a handful of disability rights activists.

I remember the Bettys of this world, because so few people will.

Crude Violations: BP Is Dumping Toxic Waste In Low Income Communities of Colour

The Gulf oil spill that has been capturing the news cycle in the United States for the last few months finally appears to be under control, and now we’re faced with a common problem: We have a whole lot of waste from the spill and associated cleanup, and it needs to go somewhere. This includes crude oil, equipment used by cleanup crews, soiled booms, and all kinds of other spill-associated detritus.

According to a story published at Colorlines last week, nine landfills in the Gulf region have been selected as sites for disposing of waste. Waste management authorities claim the material isn’t toxic, which means that regular municipal landfills, rather than landfills specifically designed to handle hazardous waste, are being used. Of the nine landfills chosen, five are located in low income communities of colour.

This is not a coincidence. While it is true that there are a number of primarily nonwhite communities in the Gulf, and that many of these communities are also low income, thus making it statistically more probable that at least some of the waste would end up in such communities, this case is clearly an example of environmental racism. There is a very long history in the United States of pushing unwanted toxic waste into low income communities in general, and communities with large nonwhite populations in particular.

There have been rumblings over the last few months about where BP is putting the oil spill waste, and most of those rumblings have focused on outraged white communities. This distracts neatly from the far more serious issue, the fact that most of this waste would end up in nonwhite communities, and that these communities would experience serious long term consequences. Focusing on white communities also allows the media to completely ignore the overt racism involved in deciding where potentially toxic waste ends up.

From the start, the oil spill has disproportionately impacted people of colour. Many of the cleanup workers were people of colour, and BP also used primarily nonwhite prison labour in oil spill cleanup and tried to hide it. Now, with the spill cleanup winding down, waste from the spill is being dumped on nonwhite communities even as these communities struggle to recover economically from the impacts of the spill. They can look forward to leaching of oil and chemicals from their landfills  in the coming decades, and reports on the ground also indicate that the waste is already poorly controlled, with oil slicks and tarballs showing up around communities being used as dumping sites.

Given that this waste is supposedly ‘nontoxic,’ why were cleanup workers wearing protective suits? Given that this waste is supposedly ‘nontoxic,’ why are people who have been exposed to  it getting sick? Given that this waste is supposedly ‘nontoxic,’ why is care being taken to ensure it doesn’t end up in privileged communities?

Crude oil can contain things like benzene, chromium, mercury, sulfur, toluene, and xylene. These substances are known to have deleterious effects on human health; at the very least, skin irritation and difficulty breathing. The oil spill waste also contains traces of dispersants, known to be toxic. And the government wants to stand by the claim that the waste isn’t toxic? Dumping these waste in facilities poorly equipped to handle it will result in long term environmental repercussions, in addition to human health  problems.

I’ve written here before about how hazardous waste disposal methods tend to disproportionately impact communities of colour, and how they are most definitely a disability rights issue. Environmental pollution is a disability rights issue, and it’s a social justice issue. Toxic waste makes people sick. Making people sick is not ok, especially when familiar patterns of oppression can be seen in who is exposed to the greatest risks. If this waste is nontoxic, surely it can go in any landfill, and it would make sense to use landfills as close to the coast as possible, right? So the waste travels the shortest distance? What exactly was the selection process behind the nine landfills identified as sites for Gulf spill waste?

BP, like other major oil companies, has a long history of engaging in environmental pollution, including unauthorized dumping of materials known to be toxic. The vast majority of this pollution occurs in communities least equipped to fight it, and when oil companies are caught doing it, often the biggest punishment is a relatively small fine. In this case, BP isn’t being clandestine: the company is being openly invited to dump waste. The claim is that it’s ‘nonhazardous,’ but is it? Even if it’s not toxic, is it really the kind of thing we want leaching out of landfills and into waterways and farmlands?

These communities will be dealing with the repercussions of BP’s dumping well into the future, just like communities all over the world where people are sickening and dying because of toxic materials present in the environment. Just like communities where rates of chromosomal anomalies are skyrocketing as a result of exposure to toxic substances. Communities with limited support systems to help sick and disabled community members are the ones disproportionately facing an increase in chronic conditions and disabilities. A long term policy of dumping toxic pollutants on low income nonwhite communities and refusing to provide support for the consequences sends a pretty clear message to members of those communities, as well as to the rest of society.

We need to be talking about the connection between environmental pollution and racism and we need to be combating plans to dump hazardous waste on low income communities of colour, from protesting clearly racist environmental policy to working in solidarity with communities who are actively fighting toxic waste disposal in their landfills and on their sacred lands.

Bad Behaviour, continued: Eight Year Old Autistic Girl Arrested For Battery

Yes, you read that title right.

Back in January, Evelyn Towry, an autistic third grader living in Idaho, just wanted to wear her cow hoodie[1. Just in case this is a US-specific slang term, a hoodie is a knit jacket with a hood.] and go to a birthday party and eat cake with her fellow students. Her teacher decided, for reasons that remain nebulous, that Evelyn wouldn’t be allowed to go until she took off her hoodie. Evelyn didn’t want to, so her teacher left her in a classroom with two staffers to guard her. She decided she wanted to leave, and a ‘scuffle’ ensued when the staffers tried to restrain her.

It ended with Evelyn’s arrest. For battery. The school claims that she ‘inappropriately touched’ the staff members who attempted to prevent her from leaving the classroom. Now, Evelyn and her parents are suing the school and the sheriff’s department. The suit is using the Americans With Disabilities Act (ADA) as grounds, arguing that the school denied accommodations for Evelyn.

Just for reference, here is the dreaded cow hoodie:

Evelyn Towry, a young white girl with blonde hair, wearing a cow hoodie and playing in the snow.

(Image via Popehat)

Clearly a menace to public decency and birthday cakes everywhere!

I am trying to imagine, here, on what planet an eight year old girl could reasonably be arrested for battery. This case is a pretty classic example of a situation where people obviously lacked adequate training and compassion, and a little girl suffered for it. I have no idea why the teacher felt so strongly about Evelyn’s hoodie, but I see no reason that she should have been barred from going to a birthday party simply because she wanted to keep her jacket on. If there had been a situation where it was appropriate to separate her from her fellow students and make her wait in a classroom with school staff members, surely those staff members should have been provided with the training to sit in the classroom with her without ending up in a physical altercation; Evelyn may have had a meltdown, may well have been ‘flailing,’ but to say that she was ‘inappropriately touching’ staff members stretches the boundaries of believability.

And the sheriff’s department most certainly should not have taken Evelyn into custody when they responded to the school’s call. They should have politely informed the school that taking terrified children to the police station is not within their job description, and that the school should call her parents, if anyone, to address the issue.

Spring Towry said she got to the school Friday just in time to see 54-pound Evelyn — who was diagnosed at age 5 with Asperger’s Syndrome, a high functioning form of autism[2. Do not even get me started on functioning labels and how much I hate them. -ed] — being walked to a police car with two officers at her side.

“She started screaming ‘Mommy, I don’t want to go! What are batteries? What are batteries?'” Towry said. “She didn’t even know what she was arrested for.” (source)

Being taken into police custody is traumatic enough when you do understand what is going on. I can’t even imagine what it would be like for Evelyn, who was probably off balance and upset already because her routines were disturbed. The prosecutor put the kibosh on the case, so Evelyn won’t be going to court to answer these utterly absurd charges, but what if the prosecutor had suspended all rational thought and gone ahead with it? Can you imagine her in court, responding to these charges? Perhaps the prosecutor would have offered a plea deal.

I have said it before, and I will keep saying it:

Teachers who have received no training in working with disabled students shouldn’t be assigned to classrooms with disabled students, yet they are.

It’s notable that the staff members restrained Evelyn hard enough to leave bruises and yet they are not being charged with battery.

ETA: After this post went up, The Seattle Times published an article indicating that Evelyn Towry’s individual education plan (IEP), in addition to being drafted without input from her or her family, ‘included police intervention as a course of action if the child misbehaved.’

Web Event: Accessible World Tek Talk presents Dean Martineau discussing Speech Recognition, July 19, 2010

Would you like to write documents by speaking to your computer, rather than typing, or are you somebody who needs to perform all your computer operations with little or no use of your hands? While still challenging, these feats are becoming ever more possible with the steady improvement of speech recognition technology.

Dean Martineau will provide an overview of the available resources to make this all possible on Tek Talk on July 19 at 5:00 P.M. Pacific Time, 8:00 P.M. Eastern time, 00:00 Tuesday GMT. He will provide guidelines to help you evaluate which of the available speech recognition options might be for you, and will demonstrate some aspects of them. This will be an opportunity for you to learn about the state of the art in speech recognition as it pertains to the blind, and to ask questions about your own situation.

Presenter: Dean Martineau
Email: dean@topdotenterprises.com

Date: Monday, July 19, 2010

Time: 5:00 PM PDT, 6:00 PM MDT, 7:00 PM CDT, and 8:00 PM EDT
and elsewhere in the world Tuesday 00:00 GMT

More details below:
Continue reading Web Event: Accessible World Tek Talk presents Dean Martineau discussing Speech Recognition, July 19, 2010

Event: Hundreds to gather at Nathan Phillips Square on July 20th at the 7th annual disability pride celebration in Toronto

TORONTO—To mark the 7th annual disability pride celebration in Toronto, Simply People: Celebrating Our Lives & Identities, hundreds will gather at Nathan Phillips Square on July 20th from 5:00PM to 8:00PM. This free outdoor event is open for all to attend (rain or shine).

On stage, there will be several guest speakers, along with performances by singers Joel Martin and Serena Pryne, humorist Libby Thaw, writer Carol Krause and the bands Symphony of Nine and Ordain. There will be a number of display tables setup by organizations/groups to provide information about their products/services.

“Our vision is to bring as many people together to celebrate our lives and identities in an inclusive environment of positive synergies and attitudes of being proud,” says Uzma Khan, a founder of this annual event.

One of this year’s guest speakers will include John Rae, the first Vice-President of the Alliance for Equality of Blind Canadians. He will be discussing the progression of the disability rights movement and his 30+ years of advocacy work.

“Canada’s ratification of the UN Convention on the Rights of Persons with Disabilities provides rights holders and their allies a new tool to remove barriers and expand opportunities for all Canadians with disabilities,” says Mr. Rae.

This event is brought to you by Canada-Wide Accessibility for Post-Secondary Students (CANWAPSS) and friends of CANWAPSS, including LinkUp Employment Services, Abilities Arts Festival, VoicePrint, Easter Seals Canada (Access 2 Entertainment), diversityworX and Scadding Court Community Centre.

ASL interpretation, attendant care and transcription services will be available onsite.

For more information about this event, please e-mail the organizers at info@disabilitypride.ca or visit Disability Pride. Join our Facebook group at Simply People – Disability Pride Celebration in Toronto.

Signal Boost: Girls with Disabilities’ Event, Michigan, US

Girls with Disabilities’ Event
Michigan Disability Rights Coalition
DATE: August 13, 14, 15
LOCATION: Camp Cavell, Lexington, Michigan

Are you a high school girl with a disability between the ages of 14-19?
Would you like to meet other girls with disabilities from across the state of Michigan?

Then you need to register TODAY for Michigan’s girls with disabilities event: Her Power · Her Pride · Her Voice

As a group, we will explore what it means to be a girl teen with a disability, in today’s world.

You will challenge stereotypes and shatter myths about what it means to be a girl with a disability. The media and some adults are continually telling us how us how we are supposed to act, who we are supposed to be, and what we are supposed to look like. It is time for us to CHALLENGE it all.

At this interactive weekend, we will use art-based activities to learn from each other and how to teach the world how we see ourselves. You will find and use the your POWER. You will find your disability PRIDE. You will find your VOICE.

*This event is only open to high school girls with disabilities (any visible and/or invisible) ages 14-19.

For more information, contact the Michigan Disability Rights Coalition.

Paying For The Recession: The AIDS Drug Assistance Program

Despite the attempts at sunny forecasts being made by commentators, it’s pretty clear that we are in a recession, that we have not hit bottom, and that things are not going to get better soon. In the United States, all of the indicators are pointing firmly toward ‘shit is bad, folks.’ The unemployment rate[1. Notoriously unreliable because it does not include people who have stopped looking for work.] is high, housing starts are low, housing sales are soft, and I’m sure pretty much all of our readers in the US can point to economic indicators in their own communities; empty businesses, cuts to local services, and so forth. Outside of the US, things aren’t looking too rosy either.

The thing about recessions is that they tend to disproportionately impact the people who are least equipped to deal with them. People living in poverty and people who are vulnerable to poverty are the most likely to suffer and the government kicks those people while they are down by cutting social services rampantly. These ‘austerity measures’ are touted as a necessity, which I personally find hard to swallow when we are handing out billions of dollars to corporations, but personal repugnance aside, they just plain don’t make sense. Cutting social services results in more costs later. If the issue is expenses, the most cost effective thing to do is to actually boost funding to social services right now.

In recent days, the United States media has been exploding with stories on the AIDS Drug Assistance Program (ADAP). On average, it costs around $12,000 every year for a patient to take AIDS medications, and remember, that’s an average. Some patients pay far more, and this is just medications, setting aside the costs of regular doctor visits, lab testing, and other services needed by people with HIV/AIDS. Founded in 1987, ADAP serves around 170,000 people every year who need HIV/AIDS medications and can’t afford them.

This program is often touted as successful because it has a lot of enrollees, although there are undoubtedly people who need assistance and can’t get it because they don’t qualify. As always, when I look at programs like ADAP, I am glad that they exist because I think it’s better to provide some support than nothing at all, but I also find them highly inefficient; the approach to health care access in the United States really sucks, quite frankly, and one of the reasons it sucks is that it’s very wasteful and poorly organised. If the United States would see fit to implement any sort of nationalised health care, we could spend less money and provide care for all instead of having a bunch of stopgap programs like ADAP. It should be possible to provide access to everyone in this country who needs it, and the fact that this hasn’t been made a priority reflects very poorly on us.

But I digress.

As of today, 11 states have implemented waiting lists for their ADAP programs, because they have no choice, and many are also cutting benefits, kicking people out of ADAP because they cannot cover them. They are not getting enough money to provide assistance, at the same time that growing numbers of HIV/AIDS patients are becoming unemployed, just like the rest of society. So, even as the need is increasing, the funding is drying up.

I often encounter the attitude that HIV/AIDS are manageable, not deadly, ‘like in the old days.’ All you have to do is take some pills, and, yes, you have to do it for life, but at least HIV/AIDS isn’t a death sentence. Er, no. Don’t get me wrong. It is great that treatments for HIV/AIDS are improving and that more medications are available and that more patients are living longer, but we should not forget that there is some serious class privilege behind who gets the most advanced treatments and who does not.

Something a lot of people don’t seem to realise is that these medications are expensive and that not all people can afford them, and those who can cannot necessarily access them regularly. ‘Compliance’ with a drug regimen is a critical part of HIV/AIDS treatment, and when you have people on ADAP going off their medications, it’s not like they can just pay out of pocket until funding comes through again:

First, there was a monthlong wait to see a doctor. By that time, he says, “I had been without my medication for a month and a half, which is bad for a person [with] HIV.”

During that time, the virus started coming back, but he had to get in line behind 18 people who were on Montana’s list. He has slowly — month by month — been working his way to the top of it, even as it continues to grow.

This patient got lucky, comparatively. People kicked in to help and he got back on his medications, with help from a case manager who helped him apply directly to the drug assistance programs offered by most pharmaceutical companies. There are a lot of people relying on ADAP who don’t have this support network, may not be aware of drug assistance programs, have trouble seeing a social worker who could connect them with resources they could use to get their medications. Meanwhile, their viral loads climb while they wait for medication.

Here in California, where the disability rights movement and HIV/AIDS advocacy movement are strong and vocal, our ADAP program is fairly stable. We’ve identified it as a priority that we need to keep funding and we have specifically addressed the fact that patients should not be put on waiting lists, that it’s important to keep patients on their medications and to avoid denying aid to those who need it. Except prisoners, of course; California is cutting ADAP funding for prisoners. As I mentioned in my post on mentally ill youth in US prisons, prisoners are already routinely denied access to the medications they do have. I don’t think we need to go around making it even more difficult for prisoners to receive medical care, do we?

Elsewhere? ADAP is a mess, people are scrambling to prevent people from falling through the cracks, and an already inefficient model for delivering access to health services is getting increasingly more inefficient. Social workers are trying to help the individuals they come into contact with, which is great, but unfortunately it means that the forest is being neglected for the trees, and when you’re spending all your time helping individuals navigate the system so that they can get help, it’s hard to work on designing and implementing more effective policy. Meanwhile, other people have no help at all, and while helping some is better than none, I would rather that we reframe our approach and get services to all.

It’s good to see the media drawing attention to this issue, because I think that people need to digest information about how austerities work in small chunks. The media can’t just say ‘hey y’all, we have a really big problem with kicking poor folks while they’re down’ because it’s too big and people tune out. By profiling individual issues and humanising the results of financial cuts, the media can, perhaps, evoke some awareness and compassion, and get more people questioning austerities and getting angry about them. It’s harder to justify sweeping funding cuts when you have seen the faces of the people those cuts will hurt.

Is that enough, though? A lot of people have spoken out very strongly against austerities, and so far it seems like the government is ignoring the will of the people along with the suggestions of some economists and charging forward with cuts to social services. I think that this is a grave mistake, and it’s also a fatal one for a lot of people in the United States.

I can live through the recession because I have a safety net. But that’s not enough. I want everyone else to live through it too.