Daily Archives: 31 March, 2010

Making “Invisible Women” even more invisible

One the arguments about why it is difficult to center the voices of women with disabilities seems to be that there just aren’t that many of us writing. Or maybe we don’t write in an easy-to-understand way. Or maybe we don’t write in a way that’s clear to people are currently non-disabled. Or maybe there just aren’t that many of us writing, so finding a good example of writing by women with disabilities to highlight is just very difficult.

Or so I’ve been told.

Certainly it’s something we at FWD have run into in argument after discussion. Reaching out to those with disability and inviting them to speak for themselves is hard. Our response has been, of course, to start this blog, but also to try and highlight the voices and experiences of others. We’ve had guest posters, of course, and have a weekday “recommended reading” selections that seeks out posts about disability written mostly by people with disabilities in their own voices. We have a lengthy blog roll that is just a tiny sliver of the disability-focused blogosphere. And by no means are any of these comprehensive. Every year I read Blog Against Disablism Day and am taken aback by the depth and breadth and variety of posts on the topic. We write, we talk, we sing, we sign, we compose poetry, we dance, and we express ourselves, all there in our own voices.

Heck, you’re all probably aware of some of the important rallying-cries of people with disabilities. “Nothing about us without us“, say, or “Autism Speaks doesn’t speak for me“.

I mention all this because I was surprised to read “Invisible Women” at the Human Rights Watch blog, originally published at the Huffington Post. It was written by Joseph Amon, who is the director of the health division at Human Rights Watch.

It’s an interesting article, and I do recommend reading it all. Here is the part of it that made me think, today, of the number of times people with disabilities are rendered invisible by social justice movements:

Women with disabilities are made further invisible because few statistics are collected that describe their numbers, and decision-making bodies in both the public and private sectors rarely include women with disabilities or consult with them. This makes it difficult to identify the key challenges women with disabilities face, or to advocate for targeted programs to address those challenges. Even when data about disability are collected, these figures are often not disaggregated by gender. Without a place at the table, women with disabilities cannot make their voices heard or their concerns addressed.

Until recently, women and girls with disabilities have largely been invisible even within the disability movement and women’s movement. The issues facing women with disabilities have not been priorities for either community. But that is starting to change.

You know what also renders us invisible?

Not allowing or inviting us to speak about our own oppression.

So many opportunities to allow women with disabilities – these invisible women – to talk about their experiences.

So many opportunities squandered.

Related: My experience at a disability-focused all-candidate’s debate during the provincial elections where the organizers refused to allow people with disabilities to ask questions because it would be “too difficult” for the candidates. The candidates were there to highlight their Party’s concerns and plans for people with disabilities.

Happy Cesar Chavez Day!

Here in California, today is an official State holiday to celebrate the life and work of Cesar Chavez. Chavez worked to promote and enforce the civil rights of farm workers and, with Dolores Huerta, was cofounder of the United Farm Workers of America, or UFW – still one of the United States’ two major union umbrellas. While his work is usually viewed through the lens of organizing for Latinos, there is a significant disability component to his work.

Migrant farm workers are affected by a number of intersecting a complex factors which negatively affect their health and put them at risk of becoming permanently disabled through their work. They are likely to be exposed to harmful chemicals or dangerous work situations and because they often live on the farm under the control of the farm owner, they have little access to health care. This is all complicated by the immigration status – or lack of – of the workers. Here’s a brief overview of the occupational hazards, from the National Center for Farmworker Health:

The agriculture industry is one of the most dangerous occupations in the United States. While farmworkers face workplace hazards similar to those found in other industrial settings, such as working with heavy machinery and hard physical labor, they also face unique occupational hazards including pesticide exposure, skin disorders, infectious diseases, lung problems, hearing and vision disorders, and strained muscles and bones. Lack of access to quality medical care makes these risks even greater for the three million migrant and seasonal farmworkers who work in the fields every year.

In 2007, for every 100,000 agricultural workers in the U.S. there were 25.7 occupational deaths in agriculture. This compares to an average rate of 3.7 deaths for every 100,000 workers in all other industries during this same year. The Centers for Disease Control and Prevention label agriculture the most dangerous industry for young workers in the United States, accounting for 42 percent of all work-related fatalities of young workers between 1992 and 2000. Fifty percent of these victims were younger than 15 years old.

During their daily work, farmworkers are often exposed to pesticides. A 2002 study examined take-home organophosphorus pesticide exposure among agricultural workers and found pesticides in dust samples from 85% of farmworkers’ homes and 87% of farmworkers had pesticides in dust samples in their vehicles. In addition, 88% of farmworker children had organophosphate metabolites in their urine.

Infectious diseases among the farmworker population are caused by poor sanitation and crowded conditions at work and housing sites, including inadequate washing and drinking water. Farmworkers are six times more likely to develop tuberculosis when compared with other workers, and rates of positive TB results between 17% and 50% have been reported throughout the United States.

Because farm labor consists of constant bending, twisting, carrying heavy items, and repetitive motions during long work hours, farmworkers often experience musculoskeletal injuries. Furthermore, workers are often paid piece-rate, which provides an incentive to work at high speed and to skip recommended breaks. From 1999 to 2004, almost 20 percent of farmworkers reported musculoskeletal injuries.

Another complicating factor is the prevalence of child labor on these farms. It is obviously difficult to quantify this phenomenon, but worldwide, approximately 132 million kids between the ages of 5 and 14 work in agriculture. In the United States, somewhere between 300,000 and 800,000 children do agricultural work, sometimes working 12 or even 14 hour days. Environmental pollutants like pesticides have greater effects on children and their growing bodies are often at greater risk of harm from musculoskeletal and other injuries.

The punishing nature of this work is well known and acknowledged by government agencies. The Social Security Administration, which provides cash benefits and medical coverage to individuals it determines are “permanently disabled,” has a special category for “the worn-out worker.” This is a provision specifically for someone with less than a 6th grade education who, after 35+ years of arduous manual labor, can no longer return to that previous employment. The most common example of someone who fits this category is a migrant farm worker – someone who worked in orange orchards, climbing ladders, carrying heavy boxes of fruit, whose body has simply broken down and can no longer sustain that arduous labor.

There are three million workers currently in the fields, including a significant number of children, for whom this is the expected outcome – if they manage to sustain their labor for thirty five years. Cesar Chavez fought for those people and fought to protect them from outcomes and conditions that were, in his time, even worse and more damaging than what I’ve described above. We now must continue his fight.

Si Se Puede!

Recommended Reading for March 31, 2010

A wheelchair symbol lit up in florescent light

Having an Answer:

Yes ladies and gentleman there are people in the world of rehab and fitness who actually give a hoot about you the person not just you the underlying diagnosis. You just have to find the right people.

And when you do, life just rocks a little bit more.

I hate to write another letter. I am tired of writing letters

If one were a wheelchair user who regularly interacted with a bus drive that demonstrated a lot of irritation at having to work with wheelchair users to get them strapped in to a wheelchair spot, one could likely tell. People are never as subtle as they think they are, especially not in their irritation.

Trans Lit – searching for our reflections

And I think the thing that does bind different trans* identities together – somehow feeling outside one’s assigned gender roles – could allow those interested in trans fiction to enjoy a wide variety of trans protagonists, even if not every protagonist matches every reader’s lived experience.

When all you have is a hammer

Let’s get two really simple things straight.

Overload is not anxiety.

Shutdown is not dissociation.

Overload may cause anxiety sometimes for some people. But it is an experience that is at the heart of things… sensory, perceptual, cognitive, whatever you want to call it. But while emotions can be involved, it really isn’t at the core an emotional experience. Get rid of the emotions and overload and shutdown will still happen for most people.

I think there are two main things at the root of this confusion:

Abilities & Burnout

Besides the basic fluctuation–and serious differences in ability between different areas, including what gets described as dyscalculia–I kept running into problems from this. Especially when I hit adolescence, then later when I hit college. (Then I burned out. Repeatedly. Which made things that much better.) Heck, the gaps and difficulties were obvious enough by the time I was 8 or 9 that one great-aunt, an educator whom I rarely even saw, brought me a huge stack of books on coping while “gifted”. I appreciate this gesture much more now–especially since she was the main person not pretending that I was not having problems coping–but the books didn’t help.

In my particular case, the unexpected skills/ability to show skills pattern got some really nasty interpretations–especially in school–because I was good at testing. (Less so, these days.) The lowest my IQ tested out was 185. I am not mentioning this out of some weird sense of supremacy, but to point out the serious disconnect between some other people’s expectations and what I was ever able to do. It’s apparently easy to project like mad, and build a mental construct of “someone that smart” based on assumptions that you, personally, would never run into a problem that you couldn’t think your way around if sufficiently motivated to do so, were you “that smart”. It’s not much of a leap to then substitute that mental construct for the real human being in front of you, and make up all kinds of weird explanations for why the two do not match. At all.*

Misconceptions about Autistic Abilities & Intelligence

Another misconception involves the idea that a high test score always indicates across-the-board ability. In truth, a single skill might enable a person to do well on a broad range of tasks at a certain age, when that same skill will not help a person as they get older. Amanda mentions in the comments that her IQ score dropped by half between the ages of five and 22. She attributes this to her hyperlexia, which enabled her to score in the 160s at age five, but wasn’t helping her anymore as an adult. Interest in and, hence, familiarity with the test items would also have an effect. For instance, I’m not sure I would still score as high on calculus as I did in childhood, because I had a special interest with it back then and haven’t in many years.

In the news:

USA: Disabled Immigration Detainees Face Deportation

The detainees, mostly apprehended in New York and other Northeastern cities, some right from mental hospitals, have often been moved to Texas without medication or medical records, far from relatives and mental health workers who know their histories. Their mental incompetence is routinely ignored by immigration judges and deportation officers, who are under pressure to handle rising caseloads and meet government quotas.

Marlee Matlin launches YouTube Channel

Marlee Matlin had an idea for a reality show that she hoped would bring some insight into the lives and struggles of deaf people and how they cope. But while reality TV has brought us wife swappers, party girls, aging rock stars and dieting divas, apparently no one was ready for something that real.

So instead, the hearing-impaired actress who won an Academy Award as lead actress for her role in “Children of a Lesser God,” took her show “My Deaf Family” to Google’s YouTube. You can watch it here.

“Deaf and hard of hearing people make up one of the largest minority groups,” she said in an interview through her interpreter, Jack Jason, “and yet there has never been a show, a reality documentary series that features what life is like for them.” Matlin financed the show, which tells the story of a family in Fremont, Calif. All the family members are deaf, except for the oldest son, Jared, and the youngest, Elijah. It is narrated by Jared.

Matlin shopped her pilot to network executives, who purported to “love it.” But none would take the plunge.