A Girl with a Disability Who Truly is “Inspirational”

The disabled person as “inspiration” trope (think Christopher Reeve) is so overused it’s ridiculous. Most people with disabilities don’t want to be an inspiration for others. We simply want to live our lives as normally as possible, just like anyone else.

Still, the “Inspirational Cripple” Will. Not. Die. It probably isn’t going anywhere anytime soon, especially after the spectacularly successful 2012 Paralympics in London last year. Thus, we have this profile of Rachel Kroener, U.S. Paralympic Female Field Athlete of the Year.

Video transcribed to the best of my ability

Rachel: I’m Rachel Kroener, i’m fifteen, I have cerebral palsy, but it’s never stopped me from doing anything. Wheelchair basketball has impacted my life so much, like it’s made me so independent. I really want to go to the Paralympics. It’s given me that chance. I’ve met so many amazing people and I’ve made so many friends from wheelchair basketball. I’ve always been really determined. I’ve never let my disability stop me from doing anything. Like for me, your disability limits you to a chair but your chair doesn’t limit you. Only your attitude can. So this year I found out I got the 2012 Female Paralympic Field Athlete of the Year. I felt so honored. I didn’t even know that was out there.

Female teammate: She helps people get better, on and off the court

Male teammate: [I had a hard time hearing him... we'll just say it was inaudible, ok?]

Coach: She looks not just to play with kids her age but looks to challenge herself against the adults and always wants to push the boundaries just a little bit farther. As a child with a disability, a lot of people don’t expect much. She has that internal drive that most great athletes have to push herself beyond what others expect of her and sometimes beyond maybe what she expects of herself.

Rachel: If I’m going to be an inspiration, I don’t want to be an inspiration because I’m in a chair. I really want people to [inaudible] and do something meaningful with their life.

I love this profile of Rachel not because it’s “inspirational” but it’s so normal. Yes, the word “inspiration” is thrown around, but otherwise, Rachel is shown as a talented, accomplished athlete – who happens to have a disability. Most importantly, she is shown as a normal high school girl excited about friends, sports and new opportunities.

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People with Disabilities are Now a Voting Bloc

I love it: The Obama campaign is actively courting people with disabilities. This video debuted at last week’s National Forum on Disability Issues.





There is also a People with Disabilities for Obama group on the Obama-Biden campaign website. Additionally, searching BarackObama.com for “disability” returns ten pages – yes, pages – of results.

And the Romney campaign? If you search MittRomney.com for “disability”, you get eight links. Note I said eight “links”, not eight “pages”. None of the links are specifically about disability policy, although two posts are remarks to veterans’ groups.

One in five people in the United States have a disability. It is incredibly smart of the Obama campaign to recognize the power of this gigantic group of voters. Mitt Romney, ignore us at your peril.

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Pro-Choice Does Not Mean Anti-Disabililty!

Every woman, without exception, has the right to control her own fertility but it is time to draw a line in the sand: People with disabilities cannot be used as pawns in the abortion debate by either the anti-abortion zealots or the pro-choice advocates.

I am completely pro-choice. I believe every woman has the right to decide when and how she gets pregnant. Every woman has the right to contraception. Every woman has the right to decide when, how and with whom she will have sex. Every woman has the right to terminate a pregnancy.

A woman should have the right to terminate a pregnancy, no matter what. She should be able to choose to have a child if it is the right decision for herself and her family. She should be able to choose to end a pregnancy or not even get pregnant in the first place if it is the right decision for herself and her family.

I completely respect and will fight with everything I have for women to have the right to control their own bodies and fertility. As a woman with multiple disabilities, I am very aware of the necessity for bodily autonomy. Women with disabilities are too often subject to physical and sexual abuse. We desperately need access to quality health care providers and comprehensive medical care, especially when it comes to our lady parts. Women with disabilities need reproductive justice as much as, if not more than, anybody else does.

Still, I am increasingly frustrated by the way people with disabilities are used to make the case both for and against abortion. At last night’s Republican National Convention, Rick Santorum used his daughter Bella’s disabilities as one hell of a nasty weapon in arguing that Republicans are the “pro-life” party:

Four and a half years ago I stood over a hospital isolette staring at the tiny hands of our newborn daughter who we hoped was perfectly healthy. But Bella’s hands were just a little different – and I knew different wasn’t good news.


The doctors later told us Bella was incompatible with life and to prepare to let go. They said, even if she did survive, her disabilities would be so severe that Bella would not have a life worth living.


We didn’t let go and today Bella is full of life and she has made our lives and countless others much more worth living.


I thank God that America still has one party that reaches out their hands in love to lift up all of God’s children – born and unborn – and says that each of us has dignity and all of us have the right to live the American Dream.

Never mind that Republicans want to destroy the social safety net that helps people with disabilities stay alive: Medicaid, Medicare, Social Security, student loans, the Affordable Care Act, etc.

However, the anti-abortion people don’t have the corner on the market on co-opting the disability rights movement for its on purposes. I was horrified to read this recent op-ed on RHRealityCheck.org in which the columnist Sierra tries to make the case for abortion as a means to eliminate disease and disability.

Respecting the rights of disabled people does not mean honoring or celebrating disability itself. Apart from the perspective and political activism that many disabled people have found via their experiences as a discriminated-against class, I’d wager most people who are disabled would rather not be…

I get that who we are is shaped by experience and that many disabled people consider disability to be integral to their personalities – just as I see poverty as a formative experience for me – but I doubt they would have chosen to be disabled in the first place.

If I somehow (metaphysics be damned!) had a choice to be born in a body that would slowly disintegrate on me, like that of Stephen Hawking, or not to be born at all, I’d pick the latter. This does not mean that I think Stephen Hawking shouldn’t be alive. He is a great scientist. He has done marvelous things with his life. But that does not make the pain and horror of his situation any less. If I could prevent my own child from being born into a life like that, I would. I consider it my moral imperative. And if Stephen Hawking and I were hanging out in the metaphysical waiting room before descending to earth, and he told me he didn’t want to be born into all that suffering, it would be unfathomably selfish of me to demand that he endure what he has endured just so that I (and other healthful people) could benefit from his mind.

Yes. She really wrote all of that and a prominent reproductive justice blog really published it.

The idea that we should use abortion as a method of eliminating disability sent chills down my spine. What Sierra is talking about here, calling for the systematic termination of potentially disabled fetuses, is eugenics. This is 2012, not 1943. The Nazis are gone, and for good reason.

I believe that we as a pro-choice movement should fight like hell for a woman’s right to end a pregnancy based on her own individual situation but we absolutely should not support abortion as a means to end disability. The idea is not only evil but illogical. According to the Census Bureau, nearly 1 in 5 people in the United States have a disability and that number is likely to increase as the Baby Boomer generation grows older. In other words, disability is usually an acquired state and Sierra’s theory to systematically prevent disability and “suffering” just won’t work.

Of course, we do need continuous medical research to improve people with disabilities’ quality of life and yes, in some cases to find a cure for certain condition. However, trying to systematically eliminate disability through abortion is eugenics. It is wrong. As a pro-choice woman with disabilities, I cannot support it.

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Almost Time for the Paralympics!

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The Olympics may be over, but the Games are done yet. It’s almost time for the Paralympics! The action begins on August 29 and runs through September 9.

The U.S. is sending a fantastic team of 94 women and 127 men and I can’t wait. While I’m most excited about wheelchair basketball, sitting volleyball, and archery, women will also compete in:

It’s going to be awesome!

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The New “Disability Chic”

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I spend most of my waking hours hanging out in my favorite chair with one or both of my pooches glued to my lap. Simon, the liver-and-white English springer spaniel, is my constant companion while Bo, the ebony cockapoo, is a less-frequent visitor who often has more pressing matters to attend to, such as following my mother around the house or standing guard in case anyone happens to drop food onto the kitchen floor. Bo’s got his priorities straight.

I spend most of my time with my feet up. Otherwise, my feet and lower legs swell, a nifty complication from my spinal cord injury. Believe it or not, the dogs, especially Simon, actually help keep the swelling down by laying (lying?) on them. I’m really sure how the mechanics of it work but for some reason, when Simon (and to a lesser extent, Bo) plops onto my lap and settles in, the warm mass of his furry thirty-five pounds squeeze the excess fluid out of my lower extremities better than TED compression stockings (TEDs) ever could.

Unfortunately, I can’t live my life in the comfy recliner entirely. If I’m just running errands, going to an appointment or visiting friends, I don’t wear the TEDs. They’re hot, uncomfortable, and let’s face it, ugly as hell.

But there are times when I know I will be on my feet all day, especially when I’m traveling, that I will wear the damn things. Last week, I went to Washington D.C. for a short vacay. Since my feet would not be elevated at any point during the day, I knew I had to wear the TEDs. Still, I decided I was going to look good doing it. I put on a cute dress, white TED compression stockings and my favorite Converse sneakers.
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I call this look “disability chic”. I’m sure the fashion bloggers will be touting TEDs as hottest new accessory in no time.

Sigh.

If only.

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Learning To Talk About Chronic Pain

I have started to realized recently that I am really bad at talking about pain. (Even that sentence sucked.) When my family and friends ask how I am, I shrug and say, “fine” or “I’m doing okay”. I don’t talk about how shitty I really feel or how much guilty I have that I didn’t get anything done that day besides my self-cares, changing my underwear and washing my face. (Notice I didn’t mention brushing my teeth or taking a shower. Sometimes those things don’t happen. Logical or not, I feel guilty about that.)

Like today. When my best friend asked how my weekend was, I didn’t tell her that I felt really tired and had the most horrific headache the past two days. Instead, I just said my weekend was “good-ish”. Why did I say that? Why didn’t I tell M. what’s going on with me?

I guess part of me thinks talking about pain and illness is whining. We all know people who bitch and moan about their ailments to get other peoples’ attention and sympathy. I don’t want to be one of “those” people. It’s more than just a fear of being annoying, though.

I’m afraid to tell the truth about living with pain and illness. If I told M. the truth, that the fatigue and headache had taken over my entire weekend, that all I had the energy for was sitting in my recliner and using my iPad to read and such, I would have to say that out loud. I would have to acknowledge that another day out of my life was completely gone…. eaten up by fatigue and pain.

My cousin B. has this fantastic expression, “It is what it is.” The pain and fatigue are what they are. They are such overwhelming forces in my life that I don’t even try to fight them. But I don’t want to admit they are there, eating up precious minutes, hours, days, weeks, months and yes, years of my life that I will never get back.

And that’s as much as I can talk about pain tonight. I don’t want to spend another second thinking about misery. I’m going to go cuddle with my dog and read.

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It’s Not About the “Dignity of Work”

In the midst of the whole “Ann Romney has never worked a day in her life” kerfuffle, a cute little ditty of a video was dug up by the Up with Chris show on MSNBC. Filmed at a January campaign stop, it shows Mitt Romney insisting that people on welfare need to experience “the dignity of work” in order to receive public assistance.

Video: Mitt Romney says welfare recipients need the “dignity of work”.

As I watch this video, I am angry beyond words. I believe Romney was talking about TANF (Temporary Aid to Needy Families) recipients, not people who are on SSI or Medicaid like me, but it doesn’t really matter. There is an unbelievably pervasive prejudice against people who receive any form of public assistance, whether it is TANF, unemployment benefits, food stamps, SSI, Medicaid or any other “entitlement”. People on welfare are looked down on. They need to learn the “dignity of work”. They are lazy.

Political cartoon depicting two elephants. Mom is reading bedtime story to her daughter:

Image: Political cartoon depicting two elephants. Mom is reading bedtime story to her daughter: “Once upon a time there was a wicked Welfare Queen who had the power to destroy entire economies with one AFDC check…” (Image via Autographed Letter Signed)

Yes, “lazy”. The construction worker who has been out of work for nine months and is collecting unemployment benefits so he can pay the mortgage on his family’s home is lazy. The single mom who can barely make ends meet working two low-wage jobs and depends on food-stamps to help feed her kids is lazy. The millions of kids who, for whatever reason, qualify for Medicaid are lazy. And of course, people like me, who have catastrophic illnesses or injuries and aren’t able to work, are lazy.

I’m not sure why, but there is a general anger towards anyone who receives public assistance. Sometimes I think it is jealousy. The Ugly Green Monster makes the haves (those who are able to work and support themselves) envy the have-nots (those who can’t), insisting the latter group is somehow getting a bigger or better piece of the piece than anyone else. The Ugly Green Monster couldn’t be more wrong. Think about it: would you prefer to have the satisfaction of doing meaningful work, earning a comfortable salary, paying your own rent/mortgage/groceries/clothing/tuition/extras and putting money away for retirement, OR would you rather be forced to live on approximately $700/month in SSI benefits?

Even though it is impossible to live high off the fat of everyone else’s labor on an income of approximately $8400 per year, there is widespread resentment towards modern-day welfare queens (and kings) like me. This anger can’t be chalked up to misplaced envy alone. We should have a culture of goodwill in this country, where everyone understands the importance of caring for the general welfare because none of us know when we’re going to need the public safety net. Instead, way too many people are infuriated by the notion that part of their paycheck goes to support people like me (or hungry families on food stamps or pregnant moms on Medicaid, etc). They don’t see themselves contributing financially to the common good but rather “sacrificing” some of their income for other peoples’ benefit.

Rather than a culture of goodwill, we have a culture of animosity towards anyone who receives public assistance. This hatred leads us to believe that people on “welfare” are “lazy” and don’t deserve help. But that’s just not true. The social safety net is there for all of us. We are all just a pink slip, medical catastrophe or financial disaster away from needing it.

Who will the “lazy” one be then?

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High Unemployment Rate for People with Disabilities Hits Way Too Close to Home

20120311-132130.jpgFebruary’s unemployment statistics were released on Friday. While we can all cheer about the 227,000 new jobs that were added last month, way too many people, especially folks with disabilities, are still unemployed. According to the Department of Labor, the unemployment rate is 15.8% for people with disabilities (PWD) between the ages 16 and 64. Even more problematic is that only 19.9% of PWDs even bother to participate in the work force.

 

Let me sum this up for ya: In February, approximately 20% of people with disabilities were actively working or looking for work. Twenty percent! And for those people, the unemployment rate was nearly twice as high (15.8%) as the national average of 8.3%. I am not an expert on disability employment but these numbers don’t surprise me.

 

I am one of the 80% of PWDs who have simply dropped out of the labor market.

 

There aren’t a lot of options for people like me, people with disabilities and chronic conditions who aren’t able to work a traditional 40 hour/week job. I could work 10-15 hours/week. Maybe. In a good week. But I can do some work. I’m educated. I have skills. Highly desirable computer skills, in fact. I should be able to work to support myself and contribute to the economy at large.

 

There should be a way for me to work in some fashion. There really should be.

 

Goddess knows I’ve tried for the last seven years, pretty much since I was released from the hospital after my injury, to figure out how to earn a living. During the first two years, even as I was still in recovery and going to physical therapy as many as three times a week, I envisioned working part-time. I knew it was an impossibility. I did. But I also knew I was supposed to work and I beat myself up every single day I couldn’t.

 

After a couple of years, I gave up on the idea of a part-time job but I still felt incredibly guilty for not working, especially when my SSI checks arrived every months. I felt like I was a leech on society, feeding on the blood of the U.S. taxpayer.

 

I still have no idea how to re-enter the workforce and it’s terrifying. I’ve been on SSI for almost seven years.That’s seven years that I have not been contributing to Social Security or a private retirement fund. I am petrified about my long-term financial Security.

 

There are some ideas for working at home, which I have tried, but it seems impossible that I’ll ever make enough to support myself. I know the Obama administration is pushing hard to increase employment for people with disabilities and I hope they succeed.

 

I hope I succeed in being able to support myself financially. Soon. I just don’t know how yet.

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What I Really Learned At BlogHer ’10

So yesterday I told you about the 7 Random Things I Learned at BlogHer ’10. All kidding aside, here’s what I really learned at BlogHer ’10.

First, I need to write more. I need to write about what I’m passionate about. I need to write every day or most days whether it is blogging, journaling or creative writing of some sort. I need to just write and not worry about my own internal critic or what others will think of my writing. I need to believe that what I have to say is of value, that is important.

Second, I really want to use this blog to create a disability rights movement within mainstream feminism and there are a plethora of ways to start to do this.

  • Ask people to share their personal stories
  • Start petitions in support/protest of an issue
  • Use polls or surveys to gain or share information
  • Create a newsletter
  • Reach out to politicians and like-minded organizations
  • Document and research your issue. For example, Melissa Silverstein of Women and Hollywood documented and wrote about the lack of women in documentaries. The foreign press, especially in the UK, took notice and the issue started to get some attention.
  • Create relationships with other bloggers who care about your cause. The importance of this cannot be overstated.

Third, BlogHer attendees are very concerned about comments on their blogs. Several of the breakout sessions I attended on blogging and activism quickly turned into “How to Manage Negative Comments” sessions. Best advice: Remember that “people have issues” and

  1. Have a comments policy and stick to it
  2. No personal attacks
  3. Decide how you want to deal with inappropriate comments

Above all, I need to decide what my mission is as a blogger and stick to it. Do I want to my blog to be about disability rights and feminism or am I happy with the current mix of feminism, politics, disability rights and random other things? BlogHer showed me that if I really want to become a better blogger, writer and activist, I need to focus on the former, not the latter.

So this is what I learned at BlogHer ’10. Hopefully, you can take some of these lessons and apply them to your own blog. If you went to BlogHer, I’d love to hear what you took away from the conference. Please feel free to leave a comment below!

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MIA

I know I’ve been MIA and haven’t blogged much lately. I’ve even been slacking on the Twitter machine. I’m sorry, loyal readers. Life’s been hard lately and I physically haven’t been able to write.

With the change in seasons, from eight months of winter to four months of spring/summer/fall, I get terrible headaches and I’ve spent a lot of time lately hopped up on pain meds. The drugs don’t really make me high and sometimes just barely help with the pain, but they do make me a little ‘fuzzy’. It’s hard to write when I feel fuzzy, even though I’ve got a lot to say.

I’ve also been dealing with a flareup of my post-traumatic stress disorder. I’ve been anxious and jumpy like you wouldn’t believe. I haven’t been sleeping well. I’ve been having nightmares and have been sleeping with the lamp on all night. In addition, there have been a lot of nights where I fall asleep sitting up. Somehow, during one of these nights, I slept with my neck scrunched at an angle and pulled something. That “something” is a problem as I think I pulled one of the three shunts I have draining excess CSF fluid from my brain to my belly. I don’t think I actually damaged the shunt but it does feel like I pulled on it and it’s going to take a couple of weeks to heal.

My life is fun like this. A lot of times I feel like friends and relatives look at me and wonder why I’m still on disability. There are a lot of reasons. These are a couple.

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