Tag Archives: daily life

Recommended Reading for December 7, 2010

Cheryl at Finding my Way: On Privilege, Again

It was after this that the almost imperceptible freak out occurred. What am I going to do when it snows? How am I going to get food this winter? People / the county just don’t shovel sidewalks very well and it’s too far to roll in the street. At least you could get to the old grocery store by cutting through the mall and you’d barely be outside at all. It’s too cold for me to be outside that long in the winter. Cold hurts. Even in the daylight, in a few weeks it will be too cold. It’s 20-25min each way. I don’t want to take paratransit somewhere I could roll (absent snow). I don’t want to pay a cab to get somewhere I could roll. What a waste of money and time and aggravation.

CCA Captioning: WHY CART in Courts/justice

As I am awaiting a verdict in what would normally be an “average” vehicular manslaughter trial, I wanted to share the many interesting stumbling blocks that arose. The defendant in this five-day trial is profoundly hard of hearing. I was called in and hired by the Superior Court as a “realtime interpreter” to provide accessibility for the defendant during his trial. The official reporter proceeded with her duties, as it would be impossible to have done both, which I will explain later. I was fortunate to have a wonderful courthouse staff to work with in this small town of Cochise County in Bisbee, AZ, about 1.5 hours from my home in Tucson.

Gwen at Sociological Images: Regional variation in adults with diabetes, 2004-2008

Here’s a problem: neither the CDCP nor the Slate article specify. They say “adult diabetes,” meaning individuals over the age of 18 who are diagnosed with diabetes (so not necessarily adult onset diabetes). I think that would mean either Type 1 or Type 2.

Katie Zezima for the New York Times: Mental health cuts put police on the front line of care

Despite increased awareness, many officers, mental health workers and advocates for the mentally ill say that with fewer hospital beds and reduced outpatient services — especially at centers that treat the uninsured — many patients’ family members and friends, and even bystanders, are turning to the police as the first choice for help when a crisis occurs. Many states are feeling the brunt of cuts that started years ago but have gotten worse because of the economy.

Christina Fuoco-Karasinski at Soundspike: Charlotte Martin dances past “Needles” to a happy ending

“One day I remember doing a set of push ups, and something just snapped, and it went from numb to pain [in October 2009]. It was a really confusing, painful journey trying to figure out what exactly it was. You’d be surprised. There are a lot of doctors that didn’t know what it was. They really thought it was muscles or tendons. But I’ve got this burning shooting thing happening. It continued to get worse. It was really awful.”

Twice in one day

Do you ever have one of those days where you just want to shake a fist in the universe’s general direction?

A few weeks ago, I had the fairly weird experience of two different people trying to make the fact that I use a cane a topic of conversation (?) on the same day. Usually, when people feel the need to point out the obvious to me — that I use a cane as a mobility aid due to chronic pain — it happens pretty infrequently, maybe once a month. Twice in the same day, though, just felt strange.

Incident one: As I am waiting for the elevator in a building on my university campus, a young woman approaches me and asks me why I use a cane. She’s curious about it, she mentions, because her mom uses one. I reply that I use it because I have chronic pain, and this seems to satisfy her curiosity. I feel oddly relieved when the conversation stops there.

Incident two: I am walking to a coffee shop, and I pass a row of garbage and recycling containers out on the sidewalk on a busy street. A guy rummaging through one of the containers picks that exact moment to look up; he sees me and yells out, “You’re a YOUNG DISABLED LADY!” I am too confused to respond, and keep walking.

I can hear the refrains now: Those people were just trying to be friendly! They didn’t mean anything by it! They were just trying to start a conversation!

Maybe, but that doesn’t stop having the fact that I move differently from most other people pointed out to me in a very obvious manner (as if I don’t already know that, what with using a cane and all) from being annoying as all get-out.

So, the next time you see a person who uses a mobility aid, service animal, or other assistive technology, please remember: If you have the urge to point it out to them and/or try to use it as a conversational springboard, chances are that you probably do not have to do this. We know that we use assistive devices, and that said devices may look odd to people who are not disabled. It’s cool. We totally get it. And, even if you don’t “mean anything by it” by pointing it out to us or trying to tell us about someone you know who also has a disability, we might read your enthusiasm as something else entirely.

Imperfections

I am one of those people who often cannot ask for help.

At times, I am so afraid of seeming weak, or whiny, or overly-sensitive, or dependent on other people that I tend to either ignore my own needs until I start flailing around at the last minute in order to not get overwhelmed, or minimize the possibility that some things could be going wrong. I am one of those people who needs to outwardly look like I know what I’m doing and that I have things totally under control — preferably at all times. (Intellectually, I know that this expectation is intensely unrealistic, and can be dangerous; even the most “put-together”-seeming person can be a total wreck in private.)

Part of this is a defense mechanism that I developed around the same time that I started getting made fun of in grade school for my mild cerebral palsy and the limp it caused. Somehow, I figured that if I could be perfect at something — my something being academics — and make it look effortless, other kids would stop making fun of me. This didn’t work out quite the way that I planned; regardless, I still tend to hold onto remnants of this habit.

Part of it is also my own internalization of the cultural ideals that tell people with disabilities that we must always “compensate” for the imperfect status(es) of our bodies or minds, a la the Good Cripple or Supercrip, as well as the cultural messages that tell many women that they must be “perfect” while making it look downright easy, in accordance with the current “ideal” feminine role. A great number of women are told, in ways subtle and not, that we must try to “have it all,” and do it without a drop of sweat showing. We must look good all of the time, we must wear clothes that are “flattering”, we must keep a figure that approximates whatever sort of beauty standards happen to be “in.” We must take care of others’ needs and feelings and make this our number one priority, and think about ourselves last (if at all). We must project an outward appearance of cheeriness, strength, or deference, no matter how we might actually feel. If we cannot do most or all of these things, we have failed. And when this loaded set of expectations intersects with the PWD-compensating-for-disability trope, look the hell out.

These are just a few examples, of course, and these expectations shift in various ways depending upon race, class, ability status, sexuality, gender identification, education, and a host of other factors that are often derided as being remnants of “identity politics.” Identity and its politics, however, still continue to matter.

Here’s where I am going with all of this: For the past few weeks, I have been dealing with newer and more unpleasant fibro symptoms that are starting to affect my day-to-day life. At first, I thought these symptoms were just the result of a bad day, and then a bad week, bad month, et cetera (you can probably guess as to where this leads). I wanted to believe that these symptoms were not a huge deal, and look like I knew how to deal with them until I made it back to “normal,” however tenuous that position is for me. Now that these new and interesting symptoms have become a bigger deal than I had anticipated, a lightbulb has also gone off in my head: I need to work on letting go of this all-or-nothing, but-I-should-always-have-it-together-even-when-I-don’t-and-do-not-need-help mindset.

Today, I finally made the decision to schedule a doctor’s appointment to get help with my new symptoms.

Acknowledging that I don’t have some things completely “together” and that I (gasp) need medical help with these symptoms may be a tiny first step toward changing the tape loop in my brain that tells me that I am on one side of a binary — that I am either a or b, all or nothing, need help with everything or do not ever. There is a middle ground. Until now, I haven’t been able to acknowledge that.

Question Time: Household Tips

Question Time is a series in which we open up the floor to you, commenters. We invite you to share as you feel comfortable.

From cooking to laundry to repairs, doing things around the house can be pretty tricky and/or exhausting and/or time consuming when you’re disabled. If you’ve any tips to share that can make your fellow readers’ lives a little easier, share them with us.

If you have suggestions for Question Times, send them to chally at disabledfeminists dot com.

Recommended Reading for September 14, 2010

Astrid van Woerkom at Astrid’s Journal: “Exercise For Mental Health!”

Bakker forgets the barriers to exercise that some people encounter. Due to the construction going on, I cannot take walks on grounds unaccompanied anymore. I cannot navigate the busy gym during fitness class. If I want to bike, I need to go on a tandem. I cannot participate in my institution’s running therapy program. None of this is due to anxiety. All of it is due to my disabilities, and the barriers to access that stand in the way.

Spilt Milk at Feministe: Fat acceptance: when kindness is activism

Body shame is a great tool of kyriarchy and we often get it from our mothers first, as we learn how bodies can be reduced to a collection of parts and how those parts can be ranked in order of acceptability. Thighs and bums, boobs and upper arms, back-fat and belly-rolls can all be prodded and critiqued, despaired over, disparaged, loathed. This is often a social activity, too. Who doesn’t love normalising misogyny over a cup of tea and a (low calorie) biscuit while the kids play in the next room?

Clarissa at Clarissa’s Blog: Asperger’s: Daily Experiences

As I mentioned earlier, I have “good days” and “bad days.” On bad days, it becomes more difficult to manage my autism, while on good days I make use of a variety of strategies that make it difficult for most people who know me to guess that I am in any way different. In this post, I will describe the techniques I use on my good days, of which today was one. I remind you that my form of Asperger’s is pretty severe, which means that not everybody who has it needs to go through a similar routine.

Cripchick at cripchick’s blog: the politics of mobility

there are so many times when i feel deep resentment for the mobility that (most) nondisabled people our age have. not physical mobility as in moving your arms, but the privilege of being able to move through the world so easily. never having to ask permission. never being dependent on access their support systems provide. never worrying about where they will stay, how they will get around, or who will hire them if they need cash.

Kim Webber at Croakey: How to boost the rural/remote health workforce? It’s not all about the dollars… [via tigtog at Hoyden About Town]

After a year-long consultative effort, the WHO document proposes 16 recommendations on how to improve the recruitment and retention of health workers in underserved areas.  You can see what they are at the bottom of this post (only one of the recommendations relates to financial incentives).

Finally, this week — September 13-19th —  is National Invisible Illness Awareness Week in the U.S. You can find out more by visiting the NIIAW website.

Stuck

Content note: This post is about a panic attack I recently had on a bridge and it is graphic in detail; graphic content starts after the cut.

It was a sunny Thursday morning, windows down and Lady Gaga on the stereo and I am buzzing along Highway One to Mendocino. I don’t go to Mendo very often these days and I am deeply enjoying the loud music and the moment and the freedom and the driving, sailing along the surface of the road instead of being bound to it.

“Road Work Ahead,” a bright orange sign warned, and I obediently slowed to something resembling the speed limit.

“One Lane Closed to Traffic,” read another, and my foot hovered over the brake while I looked in vain for signs of construction workers.

And then, I rounded the corner.

Continue reading Stuck