January » 2010 » Danine N. Spencer

Loving Your Body, Even When It's Hard

Me on Facebook yesterday: I hate my body today. I really do.

Fab feminist friend: Remember your Love Your Body post! This feeling will pass,,,

Oh damn. There’s nothing like having your own words come back you in the ass. It’s one thing to write all those idealistic, pretty words when things are going well on Love Your Body Day. It’s quite another to try walk the ‘body love’ walk when you’re recovering from a nasty fall down the basement stairs with a glass in your hand, I cut my hand up pretty badly and an now the proud owner of 17 stitches, plus I have bumps and bruises all over my body and I have a possible hairline fracture in my wrist. Plus, a nasty stomach bug was making me miserable.

Still, there was and is plenty left to love about my body:

My left shoulder, arm, wrist, hand and fingers, which have allowed me to do most of the tasks my right side does
My vocal cords, which have allowed me to ask for help when I need it and to swallow pain meds, chocolate, Diet Coke and other nutritious things
My eyes, which have allowed me to read, the only activity I’ve felt like doing for any extended period of time

My friend is right: even on the crummiest days, our bodies still do marvelous things.

Have you shown your body some love lately?

(For the record, I have poor balance and coordination as a result of my 2005 spinal cord injury. I wasn’t feeling well and simply lost my balance. No one pushed me. There was no domestic violence.)

Blog for Choice Day 2010

I am going to do my best to keep this short and sweet as I am typing one-handed on my phone thanks to a little mishap yesterday with a glass, a visit to Urgent Care, and 17 stitches in my right hand.

Today is Blog for Choice Day 2010, which marks the 37th anniversary of Roe v. Wade. Bloggers across the web are writing about why they are pro-choice so I’ll add my two cents.

I have a hard time with abortion. I’n Catholic and that makes this a complicated subject. Still, that same Catholic faith that feels very uncomfortable about late term abortion is why I’m pro-choice. It’s what has led me to believe the life of a woman who is already here is more important, that we should care for our fellow human beings like Jeaus would. To me, that means valuing a woman’s life over that of a fetus.

I am pro-choice because abortion is a medical procedure and every woman should be able to access it safely without endangering her life.

I am pro-choice. I am grateful to those who fought so hard 37 years ago so I have this right today

Disabled Women Don't Need Makeovers, Society Does

The Undomestic Goddess sent me this Jezebel link via Twitter: In Which Disabled Women Get Makeovers.

In the UK, there’s a new version of a popular makeover show: How to Look Good Naked…With a Difference. The “difference?” All the women on this series are disabled in some way:

You’re probably familiar with the How to Look Good Naked franchise (in the U.S. it’s hosted by former QueerEye fashion maven Carson Kressley) in which women, through a course of pampering, self-esteem exercises, talks with the host and makeovers, learn to feel good in their own skins. It’s a gentler twist on a genre that spawned such horrors as The Swan and Extreme Makeover, and its British iteration, hosted by Gok Wan, is a hit on the other side of the pond.

Yeah.

I’ve never seen How to Look Good Naked, even the Kressley version, so I don’t really know how to works. I don’t know if they include any plastic surgery or if it’s just hair, makeup, exercise, diet, clothes, etc. You know, the whole “you look terrible, you dress terribly, you eat terribly, your hair and makeup is terrible and you’re basically a terrible failure as a human being” king of makeover show where a benevolent fairy godperson swoops in to save the pathetic peon from her ugly existence.

Obviously, there are many problems with this type of reality makeover show, most of which I’ll leave to Jenn Pozner. The more immediate issues is why women with disabilities were singled out for a “special” episodes. More from Jezebel:

Why do these women need their own show? HTLGN is about making women feel good – all women, right? Not just the able-bodied. Those who for, whatever reason, need a boost. Not all disabled women feel unattractive; these few do. And while it’s clearly a very positive experience for all involved, isolating the episode creates the usual danger of letting the few represent a large and varied population. Why not have disabled women mixed into regular seasons occasionally, like anyone else? Especially given the practical tips Wan disseminates.

Singling out disabled women for this “special” program speaks to the larger issue of our society’s unfamiliarity and discomfort with disabilities, particularly with women’s disabilities. While this television program is currently airing only in the U.K., I think we can all easily envision a similar program on this side of the pond so I don’t hesitate to lump “our” Western society together.

Quick: Name some famous women with disabilities. I thought about this for a couple minutes and came up with Helen Keller and actress Marlee Matlin. Now try and think of some famous men with disabilities. Mine were FDR, Christopher Reeve, Corky from “Life Goes on” (yes, I’m that old), Perry Mason, Richard Dreyfuss’ kid in the movie Mr. Holland’s Opus (fictional example but oh well), Lieutenant Dan from Forrest Gump, Perry Mason, President Reagan’s press secretary James Brady, and on and on and on.

I don’t know why I can think of so many male figures with disabilities. As a society, we’re pretty comfortable with men’s disabilities. We see them as masculine, especially when the disability is a result of combat, sports or motor vehicle accident. When a man is injured on the battle field or thrown from his motorcycle at 80 miles an hour, we feel bad but it happens to lots of men. It’s “manly”. In many ways, their disability is a badge of honor and courage.

Women’s disabilities are different.

We don’t talk about women’s disabilities. We aren’t comfortable with them. I don’t know if this is because we are supposed to be the mothers and caretakers of society who every one else depends on to be strong. It may be because we have been taught over and over again that our bodies are shameful and indecent so if there is something “broken” or “dis”-abled about it, then we as women should buck up and just handle it by ourselves. We shouldn’t talk about it.

We need to talk about women and disabilities. We need to remove the stigma, fear and isolation associated with women and disabilities. For instance, when I think about a man using a cane, I think of a kind, grandfatherly type smiling at me as I walk into Walmart. When I think of a woman using a cane, I think of the witch in Snow White or the hag Hogatha from the Smurfs, although I cannot find any pictures of either actually using a cane or walking stick. I’m not sure if that means they didn’t use one but in any case, my image of women and canes is not positive. It is of mean old ladies with multiple health issues who want to harm others. That’s not exactly empowering.

Furthermore, women need to talk more openly about our bodies and our health. I will never forget listening to Sen. Chris Dodd talk about his prostate surgery at Ted Kennedy’s memorial service last summer. Dodd told the audience how Kennedy had called him shortly after his surgery and said they had shared a few jokes about catheters. Sen. Dodd talked about catheters for urination after prostate surgery at a nationally televised event. I simply cannot imagine two female survivors of breast cancer joking about their drains after a mastectomy at a similar event. Or a mastectomy bra. Or even just mammograms.

If we talked about our bodies and our health more, if we were more open about our health, illnesses, self-image and disabilities, what would that mean? Would conversations like this happen? Would we have more empathy for people who are different from us? We would be so scared of becoming sick and/or disabled?

Would we need ‘special’ makeover shows for women with disabilities? Of course not. If we, as a society, could begin to talk about women’s bodies in a healthy, respectful and nurturing way, every woman would be able to seek and find information on beauty, fashion, health, and wellness to meet her needs without a makeover show perpetuating condescending stereotypes.

Help Haiti

I feel helpless about this horrific situation in Haiti but as I try to recover from a minor concussion (made much more complicated by hydrocephalus and Dandy Walker syndrome), I have spent a lot of time watching MSNBC’s coverage of the earthquake.

There I learned about Simply Grove’s call for Bloggers Day of Action for Haiti which aims “offer our readers an opportunity to help in the relief efforts in Haiti.”

While watching Andrea Mitchell Reports, I learned from Colin Powell that the best way to help is to donate money to relief organizations. You can find a list of reputable charities here.

One of my favorite ways to donate is to text “HAITI” to 90999 to donate $10 to the Red Cross relief efforts in Haiti, which will be added onto your next cellphone bill. It’s super easy and takes only a few seconds. You can also donate $5 to Wyclef Jean’s charity Yele Haiti by texting Yele to 501 501 on your cellphone.

All images via the New York Times

Women Living with Disabilities: Ashley

Note: Today’s Women Living with Disabilities interview is with Ashley. a twenty-three year old writer and post-graduate student who has a special interest in social health issues. You can read her blog, Beyond Passing Time. Today’s interview is notable in that it is personal: Ashley has hydrocephalus and Dandy Walker variant, part of Dandy Walker Syndrome, two inter-related and very serious conditions I also battle with on a daily basis. From the bottom of my heart, Ashley, thank you for sharing your story!

1. What is your disability or chronic medical condition? How does it affect you both generally and on a daily basis?

I have a Dandy Walker Variant (cerebellum malformation) and congenital hydrocephalus (I was born with excess fluid on my brain). The effects of the DWV have been more pronounced since I got sick last June. This condition affects my balance and co-ordination. It makes my legs fatigue and ache easily too. To correct the hydrocephalus, a shunt was put in when I was ten days old. The shunt is a tube that goes from my brain to my belly.

I have a learning disability called Auditory Processing Disorder (APD). It affects how my brain interprets sound. I have a hard time understanding oral instructions. My auditory memory isn’t very good.

I also have Inappropriate Sinus Tachycardia which basically just means my heart’s naturally too fast. I take medications for this, but my heart still frequently races. This makes me weak and tired and feel generally unwell. Stairs are hard enough with the DWV! The IST compounds the situation.

I also have mild asthma and severe environmental allergies. I have a long history of recurring sinus infections, hives and breathing issues.

I also have fused spinal discs in my neck and my spine is a bit curved around that same area. My neck is constantly stiff and sore. My feet are flat and they pretty much always hurt when I walk – for any length of time.

I have weak muscles behind my right eye, so I have to work hard to focus and hold my focus on things. It also makes me see things the same I would if I was drunk.

I also have a long history of getting sick with mysterious illnesses that leave me very weak and vomiting like crazy!

2. Do you consider yourself “disabled”? Do other people see you as “disabled”?

I’ve never considered myself “disabled.” I’m completely mobile and if I work hard, I can learn to do anything I want to. I finally learned to tie my shoes and swim unassisted in grade five and mastering these things gives me hope that I can master others! With special education help in math, I was able to understand it… And the patient directors of my school play helped me master their stage directions! My disability issues can make activity difficult, but nothing is impossible for me. For me, “disabled” means you CAN’T do something.

3. Do people treat you differently or unfairly because of your disability/condition? How so? Can you give an example(s)?

For the Dandy Walker Variant and hydrocephalus, my parents, teachers, doctors and therapists gave me many provisions to protect my shunt, try to prevent me from falling or getting injured and handle writing and walking fatigue. I feel like these provisions made my disability more apparent than the actual symptoms did.

4. If you could tell the world one thing about what it’s like to live with your disability/condition, what would it be?

I always feel sick for at least part of every day. I feel some sort of pain every day, whether from my neck, legs, feet or shunt. I tire or weaken easily. I opt not to do a lot of things I want to do because I know they’ll make me feel worse. I feel confused sometimes. I think about my health everyday.

I could never narrow it down to one thing because I have so many issues that affect me in different ways and in different situations.

5. What do you like about living with your disability/condition?

The APD has helped me fall deeper in love with writing because I am able to say so much more with writing than with talking.

I have become very attuned to my body. I feel that it gives me messages all of the time about what I need to do to be healthy and feel well.

I have become very patient with myself. I think about all of those times I had to struggle to learn something or complete a task that was difficult for me. Those times make me feel like I can do anything I want.

I am so aware that my health issues cannot kill me that I feel kind of invincible. I feel lucky to not have to deal with anything disabling or life threatening.

6. Is there anything else you’d like to share?

I’ve spent my whole life wondering when or if I should disclose my issues because I’m afraid of stigma. Sometimes I feel lucky that my disability is invisible because I get to avoid being defined by my issues. There are other times when I wish my issues were visible so that others will feel sympathy for me without me having to explain how I’m feeling or how my issues are affecting me. I have a hard time looking someone in the eye and saying “I’m having a hard time.”

Sunday Link Love!

Sometime in the past few days, I noticed my blogroll had been deleted during one of the many times I re-organized the widgets in the sidebar. I decided this was as good a time as any to update my blogroll and add a few new favorites to the list. In addition to my favorite feminist links, I’m adding a second section, a dedicated “Disability Blogroll”. While I’m sure many of these bloggers are actually feminist, the focus of the blogs are living with disabilities and/or chronic medical conditions.

Here are the blogs I’ve added to this section. This list is by no means all-inclusive and I would love to add more. If you have a suggestion for this blogroll, please email me and let me know at danine@danine.net

The Links!

Photo via CaptPiper on Flickr

Women Living with Disabilities: Sadie Kay

Editor’s Note: Today’s post is the second in a series of interviews with women living with disabilities and/or chronic medical conditions.

Name: Sadie Kay
Blog: Radical Consent
Bio: I am a young professional in my mid-twenties.

1. What is your disability or chronic medical condition? How does it affect you both generally and on a daily basis?

I’m bipolar. For the most part, I’ve developed enough workarounds that I can live with my condition – though I am certainly not at ease with it. I’ve been diagnosed long enough that I find that the medication affects me more than the illness itself. I tend to be very tentative in the world because I am so used to part of the fabric of my perceptions getting pulled out from under me. Short term, because I feel that my illness makes me undeserving, I’ve spent a lot of time living in survival mode, scavenging what I need, emotionally and socially, to get by. Long term, one of the hardest things about being bipolar is keeping secret the reason behind all the differences in daily routines that taking medications brings about. I have to have a consistent story about what I don’t do and I have to stick to the story.

2. Do you consider yourself “disabled”? Do other people see you as “disabled”?

Yes and no. I consider myself disabled, but I very rarely use these words in describing myself to another person. I feel like disability is something more serious than what I have. I also struggle with my own tendency to see disability as a lack, or a failure to be “normal,” so I hesitate to identify that way publicly. Privately, I know that this illness makes my life, my day-to-day existence, hard in a way that I wouldn’t otherwise encounter.

But no, I don’t identify publicly that way. And others don’t see me as disabled, probably because they don’t know about my condition. I haven’t been able to give up hope that I’ll transform into a non mentally ill version of myself, and so I spend a lot of public energy keeping up appearances.

3. Do people treat you differently or unfairly because of your disability/condition? How so? Can you give an example(s)?

There’s the inevitable “have you tried x cure yet….?” Even so, lately it’s been less that people treat me unfairly than that I dread their doing so. A few years ago, when I first started school, my health insurance company denied me medication that I needed and had been prescribed. When I went to the student health center to find a doctor to advocate for me, the center called the cops. They kicked me and hospitalized me against my wishes – for asking for an advocate, for admitting that I wasn’t taking medication I couldn’t obtain. Because that was the first time I asked for help I have little to compare that experience to. Though most of the injuries have healed, I still fear reaching out for help because of those events. As a result, I feel like I’m expected to be super-human: never ask for help, never admit weakness or exhaustion, never break.

4. If you could tell the world one thing about what it’s like to live with your disability/condition, what would it be?

It’s not the disease that’s bad in itself, it’s how people treat the disease that makes mental illness unbearable. I suffer far more from well meaning or fearful or just plain bigoted people who haven’t bothered to learn about who and what I am before judging me than I suffer from being bipolar. I don’t mean just the big things like the insurance denials and the difficulty of finding a doctor who doesn’t judge me and trying to find someone who’s willing to date a crazy girl – I mean the little comments like “I’m so schizophrenic today!” and “wow, are you pmsing or are you just crazy?” They make a difference, you know. To me, if not to you.

5. What do you like about living with your disability/condition?

As much as I complain and am scared of it, I love the fragility and contingency of my life with a mental illness. When I had my first break I hallucinated. A lot. Over time, I learned that my mind can’t manufacture shadows for hallucinations, and I go through a phase during and after hallucinations where I check for reality by gauging the shadows of everything I see. I really like this phase. I spend so much time paying attention to shadows and sunlight that I find the world stunningly beautiful. I find my mind’s ability to repair itself again and again and still see sunlight and shadows instead of bugs under my skin something of a miracle.

6. Is there anything else you’d like to share?

I don’t know how many other people feel this way, but I see my illness as a kind of constraint. There’s this imaginary other-me, who I would have or could have been if I wasn’t bipolar, that I measure myself against. And when you struggle with a mental illness, measuring yourself against your hypothetical self is a good recipe for feeling that you-as-you-are don’t measure up. But then, I feel that I don’t fully measure up as disabled either. I just think it would be helpful if we could recognize that normal and disabled are continuums, not absolutely itty-bitty boxes we have to fit in the same way.

"Dumbo... gives you an idea of what it feels like for me: skydiving without a parachute" -Sadie Kay

My Outrageous Act for January 4, 2010

This weekend, the New York Times reported this sobering tidbit:

One in eight Americans now receives food stamps, including one in four children.

Also, from the Dallas Morning News’ boy band roundup:

Teenage rock star Nick Jonas pledged $25,000 from his family foundation to the North Texas Food Bank during a tour Saturday that thrilled 140 volunteers, including many from his core audience of young teens.

Apparently, there’s a hunger crisis going on in this country. (When a Jonas Brother decides to make Dallas-area hunger his cause célèbre, the problem has reached epic proportions.) The starving children aren’t just in Africa or Appalachia any more. They’re in Akron, Albuquerque and Antigo, WI, too. My mom donates money to the local food pantry every month and I’ve decided I can do my part, too. Hence, my outrageous act for today was to set up an automatic $20 payment to the food pantry every month via my bank’s online banking system.Twenty dollars doesn’t sound like a lot but over the course of a year, it’s $240. If just ten of you lovely readers did the same, we would’ve donated $2,400 to help our friends and neighbors get some basic groceries.

The scary part of all this is that more and more people are experiencing hunger all the time. Food stamp usage in my county in northern Wisconsin is at 10% among all people but jumps to 21% among children, an overall increase of 49% since 2007. (Check out the NY Times’ scary but illuminating map here.)

If someone like me, who receives SSI payments as her only income, can afford to donate $20/month to the local food pantry, how much can you give?

Find your local food pantry at Feeding America

Photo credit: maeliza on Flickr

Been Quiet Around Here Lately

It’s been quiet around here the last few days.

My hearing aid broke on Thursday, New Year’s Eve, around 2:30 PM. After removing every single speck of ear wax from the ear mold, changing the battery three times, checking the volume and settings a dozen times and even taking the ear mold off the hearing aid (the aid will emit a squealing noise if there’s no ear mold attached), I reluctantly came to the conclusion that the hearing aid was dead. Very, very, very dead. Because it didn’t work without the ear mold on I deduced it was a problem with the hearing aid itself, probably something electrical.

Unfortunately, that meant I couldn’t fix it myself. I immediately called the clinic, where the audiologists I work with are located. They were both on vacation until Monday. No, the receptionist informed me, they didn’t leave any instructions for what to do in case of an emergency, say, like, your hearing aid goes completely kaput.

Great.

Next, I called Miracle-Ear and two other for-profit hearing aid places. All were gone for the holiday weekend.

By the time I dialed the number for the last place, a Beltone Hearing Center where an elderly sounding lady told me that the audiologist was out and besides, they didn’t have loaner hearing aids, I was steeling for the harsh reality: I would have to spend the next four days without my hearing aid, without being able to hear.

It’s Sunday night now and I think, I hope, I pray this ordeal is almost over. I think that’s why I am allowing myself to write about this. I am planning to be at the clinic tomorrow morning at 8:00 AM when the audiologists first get there and I am not leaving without a loaner.

These past four days have been hard. They weren’t hard like “going through chemo” hard or “starving children in Africa” hard, but they were hard.

I have an 80% loss in my right ear (basically deaf) and don’t wear an aid in that ear because it doesn’t do much good. I have a 60% loss in my left ear but when properly aided, I hear pretty close to normal on that side. Hearing is a form of communication and when my left hearing aid, my gateway to the hearing world, was taken away, part of my world shut down.

In some ways, I’ve felt a lot like I did when I was a quadriplegic and basically “locked in”. I hesitate to refer to myself as having “locked in” syndrome because I was able to communicate using my eyes, lips, facial muscles, head and neck, to some extent. I was not the classic case of being “locked in”but I was close enough that the rehab staff told my family to read The Diving Bell and the Butterfly. I communicated by mouthing words and hoping and praying people could read lips, which was hit and miss (mostly miss). Otherwise, we used a letter board, something like this one. My mom or dad, the ones who were with me the most in the hospital, would start at “A” and go through the alphabet until I found the letter I wanted. Then I would blink or nod my head vigorously. Letter by letter I would spell out words and sentences. Yes, it was tedious. Yes, it was frustrating. If I could’ve talked, I would’ve been screaming and crying about how hard it was. I didn’t have a choice, though.

I didn’t have a choice this weekend, either. I’ve tried to make the best of the situation. I got a bunch of DVDs and watched them on my laptop with closed captioning and headphones. (If I put the sound right next to my ear, I can hear it. It’s kind of like being nearsighted.) Then the laptop crashed.

You. Have. Got. To. Be. Kidding. Me!

I can’t take any more technical snafus. I’ve had it. I’m planning to be at the audiologist’s office tomorrow when they open at 8:00 AM and I’m not leaving until they give me a loaner hearing aid. Yeah, we’ll see how that goes.

I’m starting to feel nostalgic for 2009…

Photo credit: If Only I Had Super Powers

Goodbye 2009, Hello 2010!

2009 was a great year for me.

It was the year I reclaimed my feminism and began to write again. I started this blog. I was published in Bitch Magazine and contributed to the Women’s Rights blog at Change.org, among others.

I traveled, going to Virginia/Washington DC twice. I attended the National Young Women’s Leadership Conference (re-named National Young Feminist Leadership Conference for 2010 – see you there!). I was lucky enough to breathe in the sea breezes on a visit to the Chesapeake Bay in Virginia.

I became involved the fight for health care reform and Sen. Russ Feingold (D-WI) even told my health care story in a speech advocating for the public option on the Senate floor in June. My Christmas gift came shortly after 6:00 AM CST on Christmas Eve, when the Senate passed its version of the health care bill.

2009 was one of the best I’ve had in many years and certainly the best I’ve had since my illness in 2005. I am excited about the possibilities 2010 will bring. I try not to set resolutions but I like the idea of goals. I haven’t decided what my goals are for 2010 yet but when I figure it out, I’ll let you know. Or maybe not. A woman’s gotta have some secrets, you know.

Happy New Year!

Photo Credit: Selva Ganapathy on Flickr