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.

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.

Follow Friday: Disability Blog Edition for June 11, 2010

Hey, it’s Friday again! I’ve had a horrible week, battling a migraine that sent shooting pains from my eye to my right arm and fingers. While I’ve been spending quality time with my painkillers, good stuff has been going on in the disability blogosphere. Check. It. Out.

Karen Putz usually writes at A Deaf Mom Shares Her World but has an awesome post up at the Chicago Moms Blog: Embracing my Deaf Self:

My summers as a teen were spent hiding the fact that I couldn’t hear. As soon as the school year ended in the late spring, my lone hearing aid was placed on a ledge and never touched until the first day of school in the fall. I spent my summers with a great group of friends, many who knew just what to do to make communication happen between us. I depended a lot on my lipreading skills to piece together conversations. It was the casual group gatherings that had me bluffing my way through conversations because it was next to impossible to lipread the many lips that were speaking at the same time.

Wheelie Catholic: A Place Where the Sidewalk Ends:

because suddenly the sidewalk ended and a very green yard lay before me. I stopped my power chair (aka The Beast) and sat there. I couldn’t cross the street because there were no curb cuts in sight and the curbs exceeded the height I can safely jump.

Screw Bronze! Secret Shames and Wish/Bucket Lists Part II with pics of fire

to do: GET OUTSIDE! Yes. Go see the outside world, now that there is sun and such. And specifically, I would like to go wheel in the woods. The pain and weakness I have right now make the difficult but I am trying to sweat to improve my circulation and healing and when that pain finally goes away, I hope I will be in better condition to go outside. I really would like to go to the woods, and into the trees, smell the loam, the fallen needles, and the vines of blackberries, fallen old blackberries giving it a scent of sweet blackberry and dusky dark earth, a hint of mushroom and warm bark.

TGIF, y’all!

Being “Ready to Work” Depends on Multiple Factors

I follow @UnitedSpinal on Twitter and have found that they are generally a decent resource for information on spinal cord injuries. Still, this recent tweet ticked me off:

A person with a disability may be well qualified and in need of income, but still not ready in attitude to work. http://bit.ly/bPXQIA

It links to an article entitled “Is She Really Ready to Work?” by Tamar Asedo Sherman, who is presumably some sort of vocational rehabilitation counselor or job placement specialist. Sherman describes her interaction with “Patty”, a client with a “disability is of a physical nature, with swelling of her legs making it hard for her to move around and making her a potential candidate for knee replacement surgery”.

Sherman goes on to explain that she has practically bent over backwards trying to get Patty a job by helping her with resumes, job applications and contractions, but Patty always seems to have an excuse for not helping herself: her computer is broken, her legs are swollen, etc. Sherman concludes the article by congratulating herself for setting Patty up with a one-day gig as a phlebotomist even though Patty had to cancel at the last minute. In fact, Sherman blames Patty for not being “ready to work”:

Maybe Patty’s disability was such that she really was not able to return to work at that time, I thought, even though she wanted to. Many people are in denial as to the extent of their disability. Was Patty one of them? … If you were in my place, would you think Patty was ready for work?

This article infuriated me for so many reasons. The first is the condescending attitude that Sherman took towards Patty. She judged Patty based on an able-bodied standard and failed to think about what else might be going on in Patty’s life and/or health that might be impeding her ability to work. Does she have invisible disabilities or physical issues that could impact her health on a given day and are too embarrassing to tell a snobby voc rehab counselor about? Since this is a website about spinal cord issues, I can think of a few medical things I’ve got that I sure as heck wouldn’t talk to a voc rehab person about.

Second, the one-day job Sherman sent Patty to was for a phlebotomist at a health fair. Let’s think about that: Generally, people who work at any kind of fair have to stand up all or most of the day and every single phlebotomist I’ve seen has done his or her work standing up. Also, I have problems with my legs swelling since my spinal cord injury and I can imagine how painful they would be after standing around at a health fair for an entire day. I am sure this is something that Patty thought about when she backed out on the job and Sherman did not.

Third, Sherman wrote this article from her perspective: how hard she worked to get Patty a job, how little Patty contributed to her job search and how ungrateful Patty was to her (Sherman).

How could this have been handled better? I would have loved for Sherman to have made Patty’s job hunt more Patty-centric. Rather than simply chalking Patty’s unemployment up to depression or lack of initiative, Sherman should have taken the time to ask more questions: Are there any other physical issues going on? Does Patty have any environmental or lifestyle barriers to employment? (child care or other caregiving, appropriate clothing, transportation, etc.) And yes, someone, probably not Sherman, should ask Patty if there are any psychological barriers to employment. This is the last step, not the first, though.

There are so many barriers to employment for people with disabilities and/or chronic illness that it is insulting and discriminatory to simply chalk it up to depression and laziness. There were so many ways for Sherman to help her client, Patty. Unfortunately, she failed miserably.

If you have time, please read the article. Then come back here and let me know what you think in the comments section below. Thanks!


Best of BADD (Blogging Against Disablism)

Blogging Against Disablism Day, May 1st 2010

Last Saturday, May 1, was Blogging Against Disablism Day. (Disablism is also known as ableism in the U.S., where I live.) This international event was hosted by Diary of a Goldfish, with hundreds of bloggers participating. Here are a few of my favorite posts:

Red Vinyl Shoes: Full Disclosure

I regularly have to take off work to go to doctor’s appointments. Most employers aren’t too keen on that; luckily my current employer is very willing to accommodate my schedule. Working on writing at home, it’s easy to fit a nap in without affecting productivity. When going on job interviews I keep these things to myself. It’s hard enough getting hired as a fat black woman, much less adding my disability to the pot of stew they’d rather not eat.

Disability: Active Academics: Looking For Parallel Themes

Although as far as the polices, documents and acts are concerned, equality in women’s education has been successfully programmed over the years, no such development has taken place in the case of disabled persons,whose education continues to be haunted by the modern-day segregationists’instrument of special schools.”

Even Grounds: Rosa Parks Is Not Done Teaching Us

We are discriminating against people with disabilities…. You could say that it is incorrect, because of the Section 508 of the Rehabilitation Act that requires to make information accessible to people with disabilities. It only applies to the Federal Government, and to those states which adopted an accessibility legislation. In the private sector, which creates most of the web sites we use on a daily basis, there is no such regulation. Nobody is required to make a private web site accessible to people with disabilities by law.”

Normal is Overrated: Of Privilege and Auditory Processing

The Normal Auditory Processing Privilege Checklist

  • I can watch first-run movies in any theater and still understand a majority of the dialogue without having to attend a specially scheduled screening with subtitles.
  • I can watch movies on streaming services and comprehend the dialogue with the same ease that I could with a DVD rental.
  • TV shows are equally accessible to me whether I record from TV or watch them online. I could drop my cable TV subscription without losing access to those shows. continued….”
  • Wheelchair Dancer: Movement is Radical

    Movement — no, moving as a disabled person — is the most radical thing I/you can possibly do. Let me say this again. Moving your body is possibly the most radical thing you, I, and we can do. I have often danced around this topic, saying things like “Mobility is at the core of the movement.” Now, I want to pop a wheelie, spin around, turn a cartwheel and say loud and clear: “Movement is the movement.

    Women’s History Network Blog: Blogging Against Disablism

    How much more problematic then was the disabled female body? And perhaps this is the question that historians have yet to answer. There is a growing body of work on mental illness and on the impact of institutionalisation on both care of people with certain types of disabilities and how this impacted on their civil and human rights- yet, there is a lot less work on what it meant to be disabled- and particularly what it meant to be female and disabled.

    There are many more BADD posts listed at Diary of a Goldfish so please, go check them out!

    Women's (Disability) History Month: Rosemary Kennedy

    Since today, March 3, is “Spread the Word to End the ‘r’ Word Day”, it is appropriate to honor Rosemary Kennedy, the third child and eldest daughter of Rose and Joseph Kennedy, who lived with intellectual disabilities (mental retardation). Most people credit Rosemary with having inspired her sister Eunice Kennedy Shriver to start the Special Olympics, which has impacted the lives of millions of people with disabilities.

    Rather than attempt to write my own mini-biography of Rosemary Kennedy, I’ll use the words the Kennedy family has chosen to remember her by:

    Rosemary Kennedy, born Rose Marie Kennedy on September 13, 1918, was the third child and eldest daughter of Joseph and Rose Kennedy. She was slower to crawl, slower to walk and to speak than her brothers, and she experienced learning difficulties when she reached school age. Despite her apparent intellectual disabilities, Rosemary participated in most family activities. In the diary she kept as a teenager she described people she met, dances and concerts she attended, and a visit to the Roosevelt White House. When her father was appointed US Ambassador to Britain in 1938, Rosemary went to live in London and was presented at court along with her mother and sister Kathleen.

    But when the family returned to the United States in 1940, “Rosemary was not making progress but seemed instead to be going backward,” as her sister Eunice later wrote. “At 22, she was becoming increasingly irritable and difficult.” The following year, after being persuaded that a lobotomy would help to calm his daughter and prevent her sometimes violent mood swings, Joseph Kennedy authorized the operation. The relatively new procedure, which at the time seemed to hold great promise, left Rosemary permanently incapacitated and unable to care for herself. On the recommendation of Archbishop Cushing, Rosemary was sent to St. Coletta’s School for Exceptional Children in Jefferson, Wisconsin, where she would live for the rest of her life.

    Eunice Kennedy Shriver had a particularly close relationship with her older sister, and great empathy for Rosemary and others who faced similar challenges. In 1962 Mrs. Shriver started a summer day camp in her own back yard for children and adults with intellectual disabilities, a camp which evolved into Special Olympics, now a global competition that involves 1.4 million athletes from 150 countries.

    Rosemary Kennedy died on January 7, 2005 at age 86. Eunice Shriver said in her eulogy that Rosemary had left a legacy that was long and deep. Along with inspiring Mrs. Shriver’s own work with Special Olympics, Rosemary had inspired her brother, President John F. Kennedy, to initiate sweeping legislation designed to improve the quality of life for Americans with disabilities. She had inspired her sister Jean Kennedy Smith to start Very Special Arts and her nephew, Anthony Shriver, to start Best Buddies. Hospitals, schools and other such facilities around the world have been named in honor of Rosemary Kennedy.

    Rosemary Kennedy may have spent the majority of her life tucked away in a small town in rural Wisconsin and hard to imagine a world without her having been in it. Would the Kennedy family have had the same sense of social justice? Would Ted Kennedy have dedicated his career to health care, children, women, people with disabilities and other marginalized groups? Would we have the Americans with Disabilities Act, Individuals with Disabilities Education Act, Fair Housing Act Amendments of 1988?

    Would we fighting for health care reform right now?

    It’s impossible to know.

    Learn more about Rosemary Kennedy:

    Image via Special Olympics