Daily Archives: 29 April, 2010

Recommended Reading for whatever day it is now

accessibility

Reminder: Blogging Against Disablism Day is coming up on May 1. Diary of a Goldfish has hosted BADD since 2006. It’s an awesome blogswarm, and it’s this Saturday. You can participate by spreading the word, making your own post, commenting on people’s posts, and/or linking posts for others. </ stolen from anna>

It has been a rough week and I’ve lost several days to medication haze, so I’m not really sure of the date. Sorry!

A map of the continental United States, filled in entirely with pills in different shapes and sizes.
A map of the continental United States, filled in entirely with pills in different shapes and sizes.

Herz Und Seele – Rant: Ableism

Only 5 years ago did I switch from analog to digital hearing aids.  I made the switch mostly because the big clunky thing was so clearly visible.  Once people saw them, they treated me differently- speaking more slowly, yelling and even making up sign language.  I have to be honest, it angered me, and it still angers me.  They talk slowly as if my hearing impairment is a cognitive impairment- when in fact, it is congenital neurological damage [in my case].  They yell as if that makes it easier for me to hear, when the problem is not volume, but frequency, tone and pitch.  Sound has ranges, and those ranges are narrower for me than most people.  Oh, and making up sign language?  That’s just stupid.  What am I, a chimp? These hearing aids don’t make me any “lesser” than you.  If you think otherwise, you have another think coming.  I’m so TIRED of be talked down to like a child, yelled at like an unattentive child, and generally treated “differently.”

with you – questions about the braille “porn for the blind”

If news outlets are going to call this porn, even softcore porn, why are transliterations (images, roman letters & sentences) of this magazine making it into their articles? At first I was intrigued and a little bit in support of Tactile Mind (NSFW?) as porn. Or at least in support of the idea of accessibility. This magazine is certainly flawed (“perfect breasts”? masks?) and I’m not sure where I stand on the politics of porn anyhow, but accessibility is good, and noting the sexuality of people with differing abilities seems rudimentary but is unfortunately an ongoing battle. Still, many news stories have covered this magazine in a way that proves that ableism reigns and that, in practice, most people don’t really think of blind people as fully sexual people. Why doesn’t Lisa Murphy’s site have a warning banner? Why can news media print/post transliterations of explicit raised images/braille porn without censoring the transliterations? I’m not arguing for censorship, just wondering why the standards are different. If this is porn, why is it showing up in Google Image Search?

Essin Em – Avenue Q and Discrimination (post is SFW but blog is NSFW)

Thinking I had misheard (I mean, this was a national tour of Avenue Q, not some local rep putting in on in a warehouse turned brilliant theatre), I asked him politely “so, if one is disabled, how might they avoid the three sets of steep stairs to get to their seat?”
“You should have bought the disabled tickets.” I was stunned. Ok, fine. Maybe I should have called Q to remind her to ask for something accessible. However, I can walk down one or two stairs, and every large theatre I have ever been in (a lot) has had elevators to the balcony level.
“Ok, well, we bought the tickets we could afford, on the balcony. Would the disabled tickets at the orchestra level have been the same price as the cheaper tickets?”
“No, you would have had to pay orchestra prices. Now, can you just get inside?”

Politico – Disabled get job training on Capitol Hill (good program, problematic framing!)

During the past month, Gutkowski and two other students with intellectual disabilities have worked in the offices of Harper, Reps. Bill Cassidy, John Fleming, Cynthia Lummis and Cathy McMorris Rodgers, as well as the Republican office of the House Administration Committee. The students do everything from answering constituent mail and shredding paper to learning how to give tours of the Capitol. Harper’s 20-year-old son, Livingston, has a genetic condition called Fragile X syndrome, which is the most common cause of inherited intellectual disabilities. Since graduating from high school, Livingston has worked several days a week in a Mississippi restaurant and takes a few community college courses but still dreams of attending Mississippi State University in Harper’s district, just like his sister. Harper told POLITICO, “A lot of times, when you get out of high school and you’re dealing with intellectual disabilities, you fall off the educational face of the Earth. Sometimes you’re looking to give hope to some of these families who want their child to continue on.”

One of Australia’s leading mental health experts says he is “dumbfounded” at the “token” amount of money handed out to the sector in the Commonwealth’s national health overhaul. Professor Ian Hickie of the Brain and Mind Research Institute at Sydney University has demanded Prime Minister Kevin Rudd explain why more has not been delivered to mental health services. Mr Rudd has promised over $5 billion in sweeteners to the states in return for their support of his hospitals takeover plan. The mental health sector had expected a significant package for reform. But out of the $5 billion to be rolled out to the states, only $115 million of new money has been allocated to mental health.

New York Times – New Rules Aim to Make Travel Easier for the Disabled (very US-centric for an article ostensibly about international travel!)

People with disabilities never have an easy time traveling, but a rash of recent improvements, including more wheelchair-accessible taxis and rental vehicles — and even Web sites for people with dexterity or vision problems — have made it easier.

[I don’t know what to do when I get these so I’m posting it] KTLA – Mentally Disabled Man Dumped on Skid Row – Do You Know Him?

White man in his thirties, brownish hair, prominent nose, pulls up a sleeve to show a tattoo on his right bicep. He is smiling.
White man in his thirties, brownish hair, prominent nose, pulls up a sleeve to show a tattoo on his right bicep. He is smiling.

“Jason” was left in front of the Urban Connection group home for the homeless about eight months ago by a woman he calls “Mary.” He had no identification and no social security number. The shelter has been trying to determine his identity ever since, but they’ve been having trouble because he has no identification card. The man, who is mentally handicapped, has “Jason” tattooed on his arm. He does not remember his birthday and has no idea where his family might be.

Food.

bodies, class issues, introspective, life changes, politics

Earlier this week, Don started his “low-iodine diet” in preparation for exciting radioactive iodine therapy next month. He tells me he’s not allowed to eat milk or milk-products, soy or soy-based products, egg yolks, anything from the sea, iodized table salt, and all restaurant foods.

Food restrictions are pretty common for people with disabilities. A friend of mine discovered her chronic pain and fatigue was influenced, at least in part, by her wheat allergy, and described at length to me the perils of “hidden wheat” in things like Twizzlers, which is a brand of red liquorish available in North America. Another gets flair-ups if she thinks about stepping away from her gluten-free diet. Some people have serious allergies to corn, and must avoid any and all things with corn and high-fructose corn syrup. There are very specific diets required for people on certain types of medications, with certain types of short-term and long-term medical conditions, people with diabetes, and people preparing for types of surgeries. Many people recovering from Cancer treatments, surgery, or eating disorders, as well as people on certain types of medications that cause dramatic weight loss, are pushed (or required) to consume those “nutritional shakes” or other forms of meal replacements.

You know what’s fun for most of the above?

How incredibly expensive all of this stuff is.

So, let me go back to Don. Right now, all of Don’s favourite foods, and everything we’ve had stocked in the freezer, are off-limits. He tried to pick up rice milk so he could have some cereal, but surprise! Most rice milk in Canada is made with salt, except a very specific (expensive) brand that isn’t sold at our grocery store. So, either we need to go to the more expensive store downtown, I need to make rice milk (I have a recipe), or he needs to not have milk with his cereal for the next two weeks. We can’t find any bread we can guarantee is made without salt, so either he goes without bread at all, or someone makes him special salt-free bread. Today, while I was away, I think he ate some special, expensive, peanut-only peanut butter and salt-free rice cakes.

Because I’ve been busier than anyone probably should be, we’ve mostly been relying on very cheap, easy-prep frozen meals that are basically salt with food in between. I’m no less busy, but now Don needs to be eating so-called “real” foods that are time-consuming to prepare, and often very expensive to purchase, especially in comparison to how we normally do the food-thing.

If you’re not on a restricted diet, I recommend checking out some of the “special” foods that people on restricted diets need to purchase. See how expensive gluten-free foods are. Compare prices of cow milk, soy milk, rice milk, and nut milk. See how many things have “corn” in the ingredients list, and try and sort out how expensive it would be to try and eat nothing with corn in it, while still eating enough. Look at some of the stuff on the shelf and try and sort out what has “hidden” wheat in it.

The cost of these items is especially relevant because so many people with disabilities live near, at, or below the poverty line for their respective countries. Don and I are able to afford to spend extra money on this restricted diet because of family support, but this isn’t an option for very many people. If you do not have a restricted diet, imagine trying to afford the foods that allow you to eat without causing flare-ups in your chronic pain condition.

Imagine as well – and this, of course, applies even when one doesn’t have restricted diets – trying to put the energy and time into preparing these foods when dealing with second shift for the sick. Imagine trying to balance it all while some stranger tells you that your, or your kid’s, disability can be magically cured if you put your family on a special, expensive, restrictive, time-consuming diet.

Don and I are incredibly privileged in this. I can take the time and make him rice milk so he doesn’t have to eat dry cereal, and we can afford to run out to the store and buy those pricey egg-whites in a carton things. And this is a restricted diet he needs to be on for a little over two weeks, and then it’s done. So many people with disabilities do not have these options. It’s eat stuff that makes you sick, or don’t eat enough at all.

I wish I had some solution I could offer to this problem, some nice little bow of hope I could tie this post up with. All I have is the knowledge that these restrictive diets aren’t things people are on for fun, but because the alternatives for them are sickness or pain. And yet, the foods people are required to eat are priced like they’re luxuries.