Tag Archives: self-advocacy

Recommended Reading for 12 November, 2010

Gentle reader, be cautioned: comments sections on mainstream media sites tend to not be safe and we here at FWD/Forward don’t necessarily endorse all the opinions in these pieces. Let’s jump right in, shall we?

Sydney Morning Herald: Why I’m not in the queue for the disabled loo by Liz Ellis.

There was a debate over policy and procedure but ultimately it came down to human conscience, something that I am incredibly appreciative of. But should I really have to rely on human conscience overriding policy and procedure?

The Globe and Mail: The sound (and sight and feel) of music for the deaf by Jill Mahoney.

Frank Russo helps make music for the deaf.

Working with a team of researchers, the Ryerson psychology professor invented a chair that allows deaf people to feel music through vibrations. He also works with both deaf and hearing musicians to compose music that focuses on vibrations and vision rather than sound.

The Los Angeles Times: Mentally ill prisoners get a second chance by Lee Romney.

Mental health courts are operating in 29 California counties, helping offenders and reducing crime in their communities.

As I mentioned a few days ago, I’m writing for the NSW Don’t DIS My ABILITY campaign at present. Here, have some tacky self-promotion!

…and I’m feeling good

This will be a bit of a shock if you’re invested in disabled bodies as broken and horrible and unlovable, so brace yourself.

I love mine.

Who Gets to Speak?

I’ve been thinking about this man ever since, and the way he read me as abled. But mostly I’ve been thinking about assumptions about the kinds of people who do disability advocacy. Namely, there’s a strong perception amongst the abled public that people with disabilities are unable to advocate for ourselves. Supposedly, our abled family and friends do it all for us.

That’s all for this time. Send your links to recreading[@]disabledfeminists[.]com. Let us know if/how you want to be credited.

Recommended Reading for Wednesday, 21 July 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.

A wheelchair user competing in a marathon, caught in the act of leaning forward for more power.

Photo by Flickr user widdowquinn, Creative Commons License.

Cathy Heffernan at The Guardian: Comment is Free: Stop stonewalling deaf jurors

When I received a jury summons a few years ago, I opened it up excitedly, conjuring up scenarios casting myself as a female version of Henry Fonda in 12 Angry Men, heroically leading my jury through society’s murky prejudices to deliver a landmark decision and liberating an innocent in the process. (I had a rather romantic notion of jury service back then.)

But something stopped me in my tracks. I saw that deaf people were included among “incapable persons” under the list of ineligible people. I was stunned. I’d just graduated from university and yet here I was, considered by the Irish court system as “unfit to serve on a jury”. What’s more, I was expected to meekly sign this summons and return it – in other words, agree to their exemption.

Dr. Rob at Musings of a Distractible Mind: A Letter to Patients With Chronic Disease

Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do – most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain – is something most of us don’t regularly encounter. It’s something most of us try to avoid. So you possess deep understanding of something that many doctors don’t possess. Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease. It’s like a parent’s knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

Oregon Health and Science University: Racism Shapes African-American Women’s Views on Depression Care (via Racialicious)

“These women were extremely wary of most depression treatments and providers they associated with ‘White’ systems of care. Although they acknowledged that violence, depression and substance abuse adversely affected their health, discussions about health care revolved around their perceptions of racism,” said Christina Nicolaidis, M.D., M.P.H., principal investigator and an associate professor of medicine (general internal medicine and geriatrics), and public health and preventive medicine in the OHSU School of Medicine. “Based on our findings, we recommend health and mental health providers endeavor to better understand and acknowledge how racism informs the experiences and perceptions of their patients.”

The expectation of being a “strong Black woman” also was a significant barrier to recognizing depression and seeking care. Co-investigator S. Renee Mitchell has used this finding to launch a campaign asking: “Strong Black woman – what are you burying, your feelings or the myth?” The research team also has organized several community depression and violence awareness events titled “Redefining the Blues.” An additional event is planned for the fall.

Kai Wright at Colorlines: HIV in Poor U.S. Neighborhoods as Intense as Developing World

The first is straightforward: Poverty and HIV are tied in the U.S. To establish this fact, researchers looked at HIV prevalence, or the share of a given population that is infected. They found HIV prevalence in high-poverty neighborhoods to be more than double that of the nation overall. Moreover, within high-poverty neighborhoods, prevalence among people living below the poverty line was double that of those living above it. If silence equals death, so does poverty.

The study’s focus on heterosexual adults is significant and generates the second important finding: that epidemics in poor U.S. neighborhoods are of similar intensity as those in poor nations globally.

Ames Alexander at Charlotte Observer: Advocate for mentally ill to meet Obama

“The president wants to mingle and meet and talk to people with disabilities where the law has made a difference in their lives,” said Andrew Sperling, director of legislative advocacy for the National Alliance on Mental Illness (NAMI), a leading group for those with psychiatric ailments.

Cian O’Luanaigh at The Guardian: Comic superhero Echo fights stereotypes of deaf people

Echo uses both American Sign Language (ASL) and a Native American system developed for communication between tribes speaking different languages. The sign systems appear throughout the comic, both when Echo is signing and as background art.

Whose Voices?

There seems to be a bit of a theme these days of nondisabled people writing about the disabled people in their lives for the mainstream media. We had Sue Blackmore writing about her daughter Emily, who has anorexia, and Anne Miller writing about her husband, Michael Davoli, for example, and I’m sure there were countless other instances in the news in the last week or so, it’s just that these two jumped out at me.

This is a consistent and troubling theme in media discussions about disability. Anna touched upon this in ‘Making ‘Invisible Women’ even more invisible‘ recently as well, discussing an opinion editorial written for international women’s day by a nondisabled man talking about women with disabilities.

For nondisabled readers, I’m sure it’s very comforting to read about disability from the perspective of other nondisabled people. It’s a familiar zone. Common ground. But for readers with disabilities, it’s a repeat of the tired old story we’ve been hearing for years; people talk about us but they do not talk with us and we are not allowed to have our own voices.

These personal essays are framed as providing insight about living with disability, but really they are about what it is like to be a nondisabled person in a relationship with someone with a disability. Which is certainly a point of view which may be worth hearing at times, except that right now, it’s the dominant narrative. In the media, it’s not that hard to find examples of pieces by nondisabled people writing about living with people with disabilities. It is hard to find writing by disabled people discussing what it’s like to live with nondisabled people, and it’s hard to find people with disabilities writing about themselves and their own experiences.

In fact, it’s rather dehumanizing to reduce people to their disabilities, which is basically what these articles do. These articles are a reminder to reader that disabled persons are the other and that we are so peculiar and alien that we can only be written about. We cannot have our own voices; we cannot speak for ourselves, we cannot discuss our own experiences, we cannot push back against narratives which stick us in boxes and hide us away.

In Miller’s piece, she says ‘Such is life with Tourette’s Syndrome.’ Not ‘such is life with my husband, who has Tourette’s Syndrome,’ or even just ‘such is life with my husband.’ And she uses her personal experiences with her husband as a springboard to position herself as an authority on Tourette’s, just as many other nondisabled ‘advocates’ use their family members as tools to suggest that they know what it’s like and thus should be provided with platforms to speak from. After all, it’s not like people with disabilities could self advocate, right? It’s a good thing we have those nondisabled folks around to speak for us.

Many of these pieces have common elements. It’s so hard living with someone who has a disability! But I love ou anyway! There are so many obstacles and barriers I face! It’s a real struggle, being nondisabled. The authors write about having to advocate all the time, or having to use tough love, and nary a mention is made of self-advocacy. Of the feelings of the subject of the article. These articles often feel like they are all about the sacrifices the author has been forced to make to ‘live with disability.’

We are subjects. We are topics of study. We are topics of discussion.

What we are not is autonomous human beings. We are not capable of communicating for ourselves.

It’s not that our voices aren’t out there. It’s not that it’s impossible to find people with disabilities to write about disability and to write about their experiences. It’s that our voices are rarely centred beyond the disability community. We are rarely asked, for example, to write about our own disability for the Washington Post. We are rarely profiled by the Daily Mail. The media wants to talk to the people who live and work with us, with our friends, but they do not want to talk to us.

Is it because actually allowing people with disabilities to speak would destroy the carefully structured beliefs of nondisabled people? Would it make people uncomfortable to know that we don’t appreciate being fetishized, treated like objects, and silenced? Would allowing us a platform mean that nondisabled people have to confront their own ableism and the ableism inherent in a lot of these ‘caregiver writes about subject’ narratives?

Disability History Education Video

I wanted to share this Disability History Education video by the Disabled Young People’s Collective. The DYP is based in North Carolina, USA, and is made up of people between the ages of fifteen and twenty-eight. See the DYP website for more.


The video is mostly captioned, but the captions can be a bit difficult to read at times, so here’s a video description.

[A group of people sitting on stairs call out, one at a time.] The following are stereotypes of people with disabilities: special, begger, psychotic, crazy, mongoloid, lazy, needy, handicap, disgusting, retard, insane, incapable, slow, helpless.
[Written out on the screen] The following are shocking facts from disability history.
[Individuals say the following]
[On an exercise machine, a person says] Did you know that 70% of people that are blind or visually impaired are unemployed?
[A person walks up stairs then pauses to speak] Did you know that disabled people were sterilized during the eugenics movement?
[A person is watching TV and says] Did you know that disabled people were killed in the Holocaust?
[A person walks closer to the camera to say] Did you know that disabled people were required to stay inside because they were considered ugly?
[A group is sitting in a parking lot, blocking a car, which honks at them. One of them says] Did you know that Section 504 was the longest sit-in ever in a federal building?
[Standing in a doorway, a person says] Did you know that disabled people had their teeth removed, because institutions didn’t want to pay for their dental costs?
[A person using a motorised wheelchair is in a parking lot with ‘another inaccessible sidewalk’ and so moves along beside the sidewalk, saying] Did you know that 92% of parents abort children who have the possibility of having Down Syndrome?
[A person signs with speech voiceover] Did you know that students at Galludet University staged a protest by hotwiring buses to block campus gates in order to get the first Deaf President there?

You can find the words to the Self-Advocacy Rap, which is at the end of the video, in the sidebar of the YouTube page.

Thank you to @cripchick for tweeting about this video.