Category Archives: make the world a better place

Recommended Reading for 06 September 2010

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

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

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

Public News Service: Disability Activists: Dump the Pity

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

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

Deafinitely Girly: Things my ears do instead of hear!

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

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

Pipecleaner Dreams: Special Exposure Wednesdays

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

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

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

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

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

Quick Press: Action For Access

Passed along to me via email is this downloadable and printable survey, Action for Access.

You go to the website, and follow the instructions for download. The survey can be taken to locations on the map, then matched up (to my understanding) with the online version, to rate local businesses and establishments in the UK on their accessibility.

There are instructions for following up on the information you provide.

If anyone is interested, or has tried this survey and followed up on it, I would be interested to know how successful they found it (or even how accessible they found the survey itself).

What a Lovely Surprise

I was recently reminded of the importance of noticing, appreciating, and celebrating “good disability moments” – those times when someone responds to me or treats me in a non-ableist way. This is more than the lack of discrimination or oppression, this is someone treating me as I want to be treated. Although these moments aren’t as routine as I would like them to be, they certainly come along, and I think it’s important to remind myself that not everyone will respond to my disability negatively or with fear or anger. Another side benefit is demonstrating how easy it is for people to act with compassion and caring on disability issues.

I read a post at Rolling Around that highlighted a recent “good moment”:

A Wheel-trans driver just came to pick up one of our members (a bit late, but understandable). While loading the member onto the bus, this driver took the opportunity to have a conversation with our member (she didn’t even realize that I was there). This member has a profound disability, he’s also blind and can’t answer back verbally. She spoke to him with kindness throughout the loading procedure, reassuring him he was going home, letting him know what she was doing and she was joking around with him. This driver has a huge heart and smile and made sure that no matter how stressed she was feeling due to traffic, she didn’t let that ruin someone else’s day. Too often people with disabilities are passed off and are not seen as “normal human beings” that have emotions and feelings. It’s a wonderful thing to see it when someone takes time out of their day to talk to members, be friendly, maintain professionalism and make someone smile with such a simple act of kindness.

I recently had a “good moment” of my own. I was at work, eating lunch with a few of my co-worker friends, people who know my disability status and whom I trust enough to feel comfortable discussing my disability issues. I mentioned how I had seen a lot of recent articles about lithium mining, spurred by the recent discovery of huge lithium deposits in Afghanistan, which prompted lots of articles analyzing lithium mining industries in Bolivia, and so on. I laughed that every time I see one of these articles, I have to consciously remind myself that the lithium they’re getting is to use in electronics and industry and that it isn’t being mined for pharmaceutical reasons. Partway through the story, I realized that one of my newer co-workers was sitting with us and remembered that I had not discussed my disability status with her, so continuing my story would basically be outing myself to her, but I was so far into it I couldn’t stop without also calling attention to my disability status. So I plunged ahead, saying that my reaction to those headlines is always to think “I don’t need that many pills! You all can stop mining the stuff now! I’m all set! Thanks!”

New co-worker laughed at the punchline and then the conversation moved on to other things. She didn’t stop the conversation to say, “wait, you’re on lithium? Isn’t that for crazy people?” or any other questions. She didn’t ask me what I take it for. She didn’t ask me anything, in fact, but continued to chat and laugh with me and the others with absolutely no change or shift at all. Since then, she’s continued to treat me exactly the same as before – griping about World Cup officiating, wondering if the A/C in our office will ever work reliably – and hasn’t mentioned or questioned my disability issues at all.

It is difficult to say how much this means to me. The ability to talk about myself, to share those jokes, without encountering negativity, curiosity, or even stares, made me feel like my disability did not set me apart from the group. That mentioning my medication in that context was equally mundane and non-notable as mentioning I have a cat, or drive a Honda, or don’t like beets. It was the feeling of acceptance. Of equality. And it was amazing.

Call to Action: Tell Parliament to Stop Discrimination against people with disabilities who immigrate to Canada

An awesome way to guarantee that you will not be allowed to immigrate to most countries – even if you otherwise completely qualify – is to have a disability, or have a disabled immediate family member.

Despite the Canadian Charter of Rights and Freedoms explicitly guaranteeing that laws in Canada cannot be written to discriminate against people with “mental or physical disabilities” (Section 15 of the Charter), Canada’s Immigration Act allows someone who otherwise passes all of Canada’s immigration requirements to be denied immigration because they “might reasonably be expected to cause excessive demand on health or social services”.

What has this meant in practice? Well, in 2009 Chris Mason, an immigrant from the UK who was injured on the job while working legally in Canada, was deported back to the UK because of his disability. In 2010, Ricardo Companioni was initially denied immigration to Canada from the US because of his HIV-positive status, but managed to argue in Federal court that he and his partner would pay for their drug treatments and thus not be part of Canada’s care system – a solution that is not available to many people. In May, the Barlagne family lost their appeal to be allowed to stay in Canada, as their youngest daughter has Cerebral Palsy. The reasoning was that the court did not believe the Barlagnes would be able to pay for their daughter’s care.

None of these stories are unique. Even when the Bill was being debated in Parliament, Members were bringing up concerns about how the “excessive demand clause” would affect people whose families had disabilities. In 2000, when Wendy Lill, a Member of Parliament, asked:

We have a charter of rights which talks about each Canadian being entitled to equality under the law. The Will to Act Task Force, which was established several years ago, talked about equality of citizenship for persons with disabilities.

Clause 34 talks about how a foreign national or other permanent resident would be inadmissible on health grounds if their health condition might reasonably be expected to cause excessive demand on health or social services. This is the only clause in the bill which seems to me would in any way relate to a person with a disability making an application to come to Canada.

I would like to know if a family with a child who has a disability such as Down syndrome or cerebral palsy would be accepted in this country. [emphasis added]

She was assured by the then-in-power Liberals that:

I think it is internationally accepted, in the Geneva convention and other statutes, that the best interests of the child can indeed be defined. In the case of a disabled child, I believe that the intent is to prevent abuse. The abuse might be that the only reason for someone wanting to come to Canada would be to seek free health care of some type.

However, in the case of family reunification, if we are talking about bringing a new family to Canada, if a child has a disability, frankly, I am absolutely confident, having met the men and women who work in citizenship and immigration, that we would take all of that into account and we would not allow it to stand in the way. [emphasis added]

I’m very happy for the no-longer-in-power Liberals that they were certain situations like the Barlagnes would never happen in Totally-Awesome-To-People-With-Disabilities Canada, but since we live in this Canada, I think their optimism was misguided. As has been amply demonstrated by reality.

The Council of Canadians with Disabilities has recently written yet-another-letter urging the Hon. Jason Kenney, Minister of Immigration, to review the “excessive demand clause”. You can read the letter in full at their website.

I have adapted their letter to send to Mr Kenney, as well as my MP, and provide that letter for my fellow Canadians to adapt or use in any way they see fit.

This is a discriminatory policy. People with disabilities and their families are not drains on the Canadian economy. We are people, and we should not be denied equal rights because of our disabilities.

My letter is below:
Continue reading Call to Action: Tell Parliament to Stop Discrimination against people with disabilities who immigrate to Canada

BADD: Why I Write

(This was originally posted as a BADD contribution at my tumblr.)

I spend a lot of time blogging about and against ableism, about being a person with a mental illness, about the way policies and cultural attitudes and assumptions act to disadvantage people with disabilities. But for some reason, I was having a lot of trouble coming up with a topic for[BADD] . I got some good suggestions – issues of ableist language (and I’ve written in the past about the words ‘retarded’ and ‘hysterical’ and their ableist roots and effects), issues about the enormous intersection between poverty and disability (poverty leads to bad health outcomes and disability often leads to poverty, making a self-reinforcing cycle), and disability tropes in pop culture (I don’t watch family guy but have talked about 90210!).

I thought of some other topics I could address – why I see today’s immigration protests and related activism as a disability-related issues and the importance of intersectionality issues in meaningful social justice work, or even an info piece on how PWDs should take steps to prepare for emergencies such as natural disasters. but I didn’t feel excited about any of those.

So I’m going to go back to the beginning, and talk a little about why I identify as a person with a disability, why I talk about disability issues, why I’m a contributor to a blog about feminist and disabilities, why I spend so much time and emotional energy on these topics. (Which are, frankly, often personally distressing, what with all the info about how I’m going to die poor and alone.)

I write because I want things to change. I’m not always sure the writing helps me individually – it is hard to focus on these issues, to perpetually remind myself of the limitations caused by my disabilities, of the societal attitudes that assume that I am lazy and worthless and dangerous to be around, of the innumerable policies and laws that reinforce and ensure the unequal status of PWDs. And while I see the value of creating a space where other PWDs can discuss their personal circumstances and struggle and receive support instead of judgment and blame, the internet is a big enough place that I think that role is being filled, well, by lots of blogs and LiveJournal/Dreamwidth communities.

I write because I want people – both PWDs and TABs – to recognize the larger cultural and political forces that create and maintain societies that use disability as a punchline, as an insult, as a reason to keep people unemployed, poor, disempowered, and sometimes leading directly to their deaths. I want PWDs in the US, Canada, UK, Australia, and other “first world” countries to understand that lobbying their governments to abandon use of land mines can directly affect the prevalence of disabilities in poorer countries like Cambodia (thanks to s.e. smith for that great post!). I want people to think about how recovery efforts in disaster-affected areas like Haiti need to include specific focus and attention on the unique and disproportionate needs of PWDs.

But for me, it’s not enough to just help people understand. I desperately want them to act. To get involved in the political process to advocate for the rights and needs of PWDs. To get involved in social justice issues as a whole, because issues affecting immigrants are going to fall heavy on immigrants with disabilities. To tease out how a national policy can and will affect PWDs in other, poorer, countries. To vote, to talk to their elected representatives, to encourage others to act.

I believe that change is possible. And I blog to facilitate, encourage, and promote that change.

Blogging Against Disablism Day 2010: Do You Need Assistance?

It’s Blogging Against Disablism Day 2010, and I would highly recommend checking in at Diary of a Goldfish to see other posts on the theme!

A question that I get from a lot of nondisabled folks as they are starting to explore ableism and interacting with people with disabilities is ‘I really can’t stand it when someone appears to be in need of help, and I want to offer assistance, but I don’t know how. Can you tell me how to politely ask someone if help is needed or wanted?’ The desire to offer assistance is a natural one, but it often expresses in really offensive and sometimes dangerous ways (‘here, let me push your chair for you!’) so this is a question I don’t mind answering!

And I’m going to start my answer with an anecdote from my own life which I think illustrates a reasonably good example of how such interactions can go:

I was in line at the grocery store, and I noticed a wheelchair user behind me with a basket. I quickly observed that his chair was low and the conveyer belt was high, and it might be difficult for him to get his groceries up onto the belt, so I said:

‘Would you like assistance with that?’

And he said:

‘No, thanks, I kind of just shove the basket up there and let the checker deal with it.’

And I said:

‘Ok, cool.’

And then we had a conversation about fruit.

Note that this interaction had several characteristics. I observed something which I thought might be an issue and offered assistance. I did not yank this gentleman’s basket out of his hands. I didn’t shout at him or talk very slowly as though I was afraid he wouldn’t understand me. I looked at his face, not his chair, while we were talking.

And when he said ‘no, thanks,’ I didn’t force the issue. I gracefully acknowledged his equally graceful decline of my offer, and we went on with our days. In other words, we had an interaction where we both treated each other like human beings, equally deserving of courtesy, respect, and autonomy.

When you want to offer assistance to someone, offer politely, and don’t swoop in as though you are assuming that your offer has already been accepted. Never touch a person’s body, service animal, or assistive device without permission. If that person says ‘no, thank you,’ say ‘ok.’ If that person says ‘yes, please,’ pay attention when that person explains how you can be of the most help.

Over at Jesse the K’s place, a great conversation took place recently in which we talked about the language people use when offering assistance, and what a difference it makes:

When someone says “Can I help you with that?” my negative response can be interpreted as “you’re not capable of helping me” (which many folks would perceive as rude). To me, that question is more about the asker’s need to help than my requirements for assistance. When someone says “would you like a hand with that?” saying “no” focuses on me, not the asker. (Jesse the K)

When framing offers of assistance, it is tremendously beneficial to phrase them in a way which centers the person who appears to need help, rather than the person offering it. Saying ‘Do you need assistance?’ or ‘Do you need a hand with that?’ sounds very different from ‘Can I help you?’ In addition to watching your literal language, it helps to watch your body language and tone; are you using a sing songy voice? Are you talking any differently from the way you would talk to anyone else? Are you staring at a physical impairment or assistive device while you talk?

The brief version of the answer to the question of ‘how can I offer help without being intrusive or offensive?’ is:

  1. Address the person, not the impairment, using language which centers that person.
  2. If the answer is ‘yes, please,’ pay attention so that you know how to help.
  3. If the answer is ‘no, thank you,’ say ‘ok,’ or something along those lines.

In respect for the spirit of Blogging Against Disablism Day, particularly the language amnesty, this is designated as a 101 thread. People with all levels of experience with disability activism and the disability community are encouraged to comment and exchange questions and ideas.

(Crossposted at this ain’t livin’.)

Stigma Kills: A Concrete Example

Often when bloggers or activists push back against ableist language and stereotypes in the media, especially pop culture, someone will respond with an argument that there are more important disability issues to address and that the topic at hand is mostly irrelevant to disability rights as a whole. This has happened with each of the posts in the Ableist Word Profile series, it’s happened with discussion about ableist tropes in pop culture, it’s happened when critiquing the vast overrepresentation of criminal behavior in news coverage of people with mental illness.

I believe these things matter very much. Perhaps not individually – if I slip and use the word “lame” pejoratively, it does not automatically cause a person with a disability to die instantly. But each individual instance adds up to become a trend, to become a larger understanding and expectation of how things are. And if those understandings and expectations aren’t accurate, it can have dramatically horrific results.

This is because a lot of our ongoing decisionmaking is done automatically, unconsciously. This is because we are constantly presented with such a vast amount of information that if we stopped to consciously evaluate everything, we’d never be able to do anything at all. When I see an object with keys labeled with letters and laid out in the QWERTY design, I recognize it as a keyboard an assume I use it to manually input written data into a computer or typewriter or phone or other device. This saves me the trouble of figuring out each and every time what this object is, what it is for, how I am supposed to interact with it, and what end result I can expect. I do this instantly, even though it is immensely complicated – it has been extraordinarily difficult to program a computer to identify, say, a keyboard from a photo or video, regardless of lighting, angle, and lots of other variables that the brain can process almost instantly.

There are similar examples for evaluating other sensory input. When I touch something, I know instantly and without consciously considering it whether the object is solid or liquid, dry or wet. I have no idea how I make that evaluation and instructing someone else on making that judgment would be immensely difficult for me – but when my foot touches a wet patch of carpet en route to the bathroom in the middle of the night, I pull my foot back lightning fast to avoid what is surely cat puke. If I feel myself losing balance, I put out a hand to catch myself without consciously deciding to, because my classification of my sensations as “losing balance” was done entirely unconsciously.

How does stigma fit into this? Well, a stereotype is an unconscious cognitive shortcut – instead of examining an individual person or situation, we apply a stereotype to make assumptions. While a stereotype is usually seen as a negative thing, they serve an important purpose by allowing us to make educated guesses. For example, when I go into a fast food restaurant, I know to go to the counter and give my order to someone behind the counter, usually wearing a uniform. While this has held true at the places I’ve visited in the past, if I go to an new fast food restaurant that I haven’t visited before, I will assume that I use the same procedure. That’s a useful assumption that saves me the time and energy of approaching each situation as brand new and unrelated.

There are times when stereotypes can be harmful and damaging, as we well know. The stigma against PWDs is an assumption applied to all PWDs simply because they are PWDs, assuming they have a set of presumed characteristics, motivations, and beliefs. It is a stereotype composed of all the understandings and expectations of PWDs conveyed by all the little things – the word choices of the people you talk to, that one character in that on tv show, that story you saw on the news last night. And although the specifics fade away, most people are left with vague, unconscious associations. Again, some of these associations are essentially value-neutral, as how I generally associate red with “stop” and green with “go” from traffic lights and signs. But people can also have unconscious associations around more complex and problematic issues, like race, gender, and disability status.

Social psychologists from Harvard developed a computer-based test to measure the existence of implicit associations and stereotypes – the Implicit Association Test (IAT). The IAT asks users to rapidly categorize words to the left or right of the screen. From the IAT FAQ:

The IAT asks you to pair two concepts (e.g., young and good, or elderly and good). The more closely associated the two concepts are, the easier it is to respond to them as a single unit. So, if young and good are strongly associated, it should be easier to respond faster when you are asked to give the same response (i.e. the ‘E’ or ‘I’ key [to indicate left or right]) to these two. If elderly and good are not so strongly associated, it should be harder to respond fast when they are paired. This gives a measure of how strongly associated the two types of concepts are. The more associated, the more rapidly you should be able to respond. The IAT is one method for measuring implicit or automatic attitudes and is featured on this website. There are other methods, using different procedures, that have been investigated in laboratory studies.

I’ve taken a number of IATs before (because I’m dorky about cognitive science and this kind of stuff) and believe that they have correctly identified in me some negative unconscious associations. For example, I unconsciously associated women with home and family and men with business. Consciously, I strongly disagree with that association! So when I do consciously consider my assumptions about those associations, I override and reject my unconscious associations.

When researching this post, I took the IAT that measures unconscious associations around disability. (I can’t link directly to that test, but it can be found in the IAT demonstrations available here.) Taking the test, I found that I have a slight automatic preference for abled people over PWDs. This doesn’t mean that when I act, speak, or even think about these issues I exhibit that preference. It doesn’t mean that I “really” prefer TABs to PWDs. It means that I have been sufficiently inundated by messages that associate TABs with “good” and PWDs with “bad” that I have a slight unconscious tendency to apply that association, a tendency almost instantaneously overruled by my conscious thought. So it is an association that exists only for the tiniest of moments until it is extinguished by cognition.

How can those tiny moments, almost too small to measure, even matter? Well, as Chally recently posted about, a Los Angeles police officer shot and killed an unarmed man with an unspecific cognitive disability autism 1. The officer fired as the man reached towards his waistband after failing to respond to verbal commands from the police. From the LA Times article linked in the post:

[LAPD Officers] Corrales and Diego believed “he [the PWD] was arming himself” and fired, Assistant Chief Earl Paysinger said at an afternoon news conference.

The officers made decisions in a fraction of a second,” he added.

In a fraction of a second.

Just long enough for the unconscious association to spark but not long enough for conscious thought to override it.

Just long enough for stigma to kill.

  1. ETA since his family disclosed that he had autism in numerous public interviews.

In which you are given information you may be able to use to help a few thousand disabled students out!

Hey, is anyone here from NSW? If you are…

a) Wondering what on earth that is, it is New South Wales, a state in eastern Australia.
b) Aware of what I am talking about but are not from NSW, hello there!
c) From NSW, greetings fellow New South Welsh creature! We’re pretty great, aren’t we?

Well, we are, but, in an incredibly subtle segue, I must tell you that the NSW education system does not exactly treat all of us as though we are. And a good bit of that flows down from the Federal government – I still have rage over the Howard government’s cuts to literacy program funding, SO much rage – but, of course, education is run on a state level. And let me tell you something, going through the NSW education system as a disabled student was a collection of some of the most rage-inducing, frustrating, difficult experiences of my life. For portions of high school, campus was inaccessible to me and I was self-taught. And other people had it so much worse than I did, not being given appropriate literacy and numeracy support, or having the system used switched around on them. Having, and/or their parents/carers having, to search around until they could find a high school that could or would take them. Endless funding cuts. Shaming and poor accessibility and a lack of respect for these fine young people. It’s appalling and thinking about it can send me into hot teary fury. I could fill a book with my rage over the treatment of PWD in my fair state’s education system, but I have a suggestion that is much more practical.

The NSW Parliament is conducting an inquiry into the provision of education to students with a disability or special needs. The focus is on students attending primary or secondary schools. According to their media release (PDF format):

A number of other important issues are also covered by the terms of reference, including:
• Level and adequacy of current special education places
• Adequacy of support services for children with a disability in mainstream school classes
• Provision of a suitable curriculum for intellectually disabled and conduct disordered
students
• Access to professional support services, such as speech therapy, occupational therapy,
physiotherapy and school counsellors
• Adequacy of pre-service and post-service teacher training.

I’d tell you what they said in their two public hearings thus far but, ah, there are no transcripts available.

Moving right along to what you can do! The general public can make suggestions through email, fax or post (they’d like written and electronic format best, but you can use other formats such as voice recordings or video if that would be preferable for you). You can write as much or as little as you like, it can be your opinions about how things stand, recommendations for action, that sort of thing. The kicker is that submissions close by 19 February (sorry, I would have told you sooner but I just found out about this!) Submission extension requests are possible; click through to find out more.

So, NSWites, please consider making a submission, and I suppose non-NSWites who have been watching us in horror can submit too if they have suggestions. Please please please, because no one should have to go through what thousands of NSW students are going through.

>>>All the contact information you need to submit is right here.<<< If you are in need of assistance or suggestions in putting together your submission, please leave a comment. Alternatively, I may be able to help out if you'd prefer to email me at chally [at] disabledfeminists [dot] com. Very warm thanks to Mindy from Hoyden About Town for raising this. Feel free to use comments to rant about your experiences as a disabled student if you’re so inclined.