Wheelchairs Are Not Toys

While my relatives were here last week, we took the kids to the local children’s museum. I was sitting with the three year-old, who I’ll call Jon*, in a little alcove while he played with a super-cool medieval castle, knights and even a few dragons. After a while, a little boy, perhaps seven or eight, came in pushing himself in a wheelchair. I became a little bit flustered. What would I say to Jon if he asked about the boy with the wheelchair? I wasn’t sure how to explain to a preschooler that some people need to use wheelchairs for mobility. I didn’t want to just say, “His legs don’t work so he needs a wheelchair” because what if the boy had a heart problem or what if he could walk with crutches or a walker but couldn’t walk long distances? That would apply in either case or a hundred others.

I was really frustrated with myself because I didn’t know what to tell Jon. I didn’t want to offend the other little boy by saying the wrong thing because I know that non-disabled people say stupid things about disabilities every single minute of every single day. While I was trying to figure it all out, the boy got up out of his chair to get a better look at his train exhibit and then sat back down. Now I definitely didn’t know what to tell Jon about the boy’s disability. What kind of condition did he have that allowed him partial mobility? Luckily, the boy soon wheeled himself around and left the room. Jon had been so engrossed with the knights and dragons that he never even noticed the other boy.

Later on, I was exploring the museum with Jon’s five year-old brother, Don*, when we visited the “medical center” exhibit. This included a dentist’s office, doctor’s office and exam area, surgery area including a cloth “cadaver” that the kids could open up and look at the body parts, and a hollowed out ambulance with flashing lights that actually worked. (Don loved this.) The medical center was pretty cool and I thought it was one of the best parts of the museum.

However, I have one major complaint.  The exhibit also included two wheelchairs that the kids could sit in and push themselves around in. Yeah. It was about then I noticed the boy from the other room walking around without any difficulty. He had just been “playing” at being disabled. Other children treated the wheelchairs like toys, too. The museum had a couple of bikes sitting around for the kids to ride and they played with the wheelchairs in the same manner as the bikes, as if they were a moving toy that they could tire of and cast aside. And that’s the problem.

Wheelchairs aren’t toys. For people living with paralysis and other mobility impairments, wheelchairs are a vital lifeline to independence. But society doesn’t see wheelchairs that way. They see them as a sign of dependence, something the “wheelchair-bound” or those “confined to a wheelchair” have to use. In fact, the children’s museum reinforces this prejudice by teaching kids to associate wheelchairs with hospitals and sickness.

There was no education about the wheelchairs. The kids weren’t taught about the wheels, locks, handles or footplates. They didn’t learn about who uses a wheelchair and when and why. Forget about people with disabilities. They didn’t even learn about why they might need to use a wheelchair at the doctor’s office or hospital. All they learned was that it was a chair propelled by wheels and that when they were sick of riding in it, they could hop out and move on to something else.

It all just gave me an icky feeling. It felt disrespectful to all the kids who can’t jump out of the chair when they decide they want a different “toy” to play with. Pretending a wheelchair is a toy felt disrespectful to all the kids for whom a wheelchair means the independence to move from room to room at home and school. They can hang out with their friends on the sidewalk and the playground.

When you have your own wheelchair, you control where it goes. You are in charge of your own movement, even if you can’t control your body. In other words, Wheelchairs are serious business. They aren’t symbols of dependence but independence. They aren’t toys.

While I had a great time at the children’s museum, the wheelchairs in the medical office exhibit were a huge missed opportunity for kids to learn about disability.

Here are a couple photos of the medical center exhibit, which I “borrowed” from the museum website:

Children dressed as patients, sitting in wheelchairs & using crutches in the medical center exhibit at the children's museum in Eagle River, Wisconsin One girl sitting in wheelchair and one girl using crutches in medical center exhibit at children's museum in Eagle River, Wisconsin

* Since we’re fast approaching the premiere of Mad Men, I went with “Jon” for Jon Hamm and “Don” for Don Draper. :)

Follow Friday: Disability Blog Edition for May 28th

If you do the Twitter thing, you are probably familiar with the #followfriday (or #ff) phenomenon, where you recommend other people on Twitter to “follow”. This is a lot like recommending friends “you may know” on Facebook. The social media guide Mashable.com explains more:

#followfriday is a game in which people suggest who to follow on Twitter. It helps everyone find interesting Twitter users. You list the users you recommend following and add “#followfriday” anywhere in the Tweet so others can find it. The “#” is very important – don’t forget it!

This week, I recommended several self-identified women with disabilities for #followfriday. You can see my selections here and here.

In addition to recommending women to follow on Twitter, I’m going to start highlighting women who blog about their disabilities with a little link love. Let’s get started!

Beyond Passing Time: Wimpy Tries to Live with it

To begin with, I didn’t even know my heart was chronically fast — sometimes dangerously — when I was diagnosed with this problem six years ago. In grade eleven and twelve, doctors had noted that it was fast a couple of times, but it was written off as a side effect of extra Ventolin inhaler puffs before a pulmonary function test and another time, as part of a fever when I was in the hospital. I just assumed my heart was just a bit touchy — that’s all.

Brilliant Mind Broken Body: The late night breaks are the hardest

I don’t want my hands covered in silver braces that people will stare at and ask about. Bad enough that they feel no shame about asking me why I need a mobility aid – whether it’s my service dog or, in the past, crutches and canes. But to have them querying me about a set of braces that will ruin the slim, clean lines of my hands is particularly hard.

Life, Paralyzed: Slacker

Most recently, I’ve been getting a throbbing pain all through my back, especially in my lower back. It’s all very odd and frustrating, because I can’t feel the exterior; I only feel the interior. Could I really be feeling my bones and muscles? I doubt it. Regardless, I’ve had all kinds of tests done in hopes of finding a cause and haven’t had any luck. All my major organs are fine. My breathing is good and my blood work is fine. That leaves me with, “it could be stress or neurological pain.” Great.

That’s it for this week. Have a great weekend, y’all!

Thank You Thursdays: Christopher Reeve

A lot of blogs do a little segment called Thank You Thursday so I thought I’d try it out, especially as today is a particularly poignant anniversary for me.

On May 27, 1995, Christopher Reeve was paralyzed as the result of a riding accident and he became a ventilator-dependent quadriplegic. Reeve used his money and fame to start the Reeve Foundation, which is dedicated to “curing spinal cord injury by funding innovative research, and improving the quality of life for people living with paralysis through grants, information and advocacy.” I don’t know a lot about Christopher Reeve, except that he played Superman and that after his accident, he became the face of spinal cord injury. He showed the world that even if you were a quadriplegic, you still had a brain, you still had a heart, you were still a person and you could still change the world. From what I can tell, his foundation blew the field of spinal cord research wide open and was one of the most vocal proponents of stem cell research (along with Michael J. Fox) during the Bush years.

If Christopher Reeve hadn’t been injured, I am not sure I would be here today. When I became a quadriplegic, my doctors loaded me up with steroids for months. Eventually, the lesions and swelling on my brain stem came down and with the help of the best therapists ever and an unbelievably huge amount of work, I started to get almost all of my mobility back. I don’t know if those therapies were available before the Reeve Foundation started funding research, but I do know Christopher Reeve created an atmosphere of hope for people with spinal cord injuries and paralysis.

I was given the steroid regimen because even though my case looked dismal and there was almost no chance I would regain any mobility whatsoever, it was worth a shot. I was sent to the best spinal cord rehabilitation unit in the state, and possibly the Midwest, because my doctors and insurance company understood how crucial the best physical and occupational therapy was rather than send me to a “long-term care facility”, otherwise known as a nursing home. Even if I had never moved a muscle again, these were the people would try to coax any life out of my damaged nervous system and teach me how to live as a person with a disability. My therapists never gave up on me and I did regain most of my mobility and begin to learn how to care for myself again.

The likelihood is that had I been sent to this particular spinal cord rehabilitation unit (at Froedtert Hospital in Milwaukee, WI), I would have had this experience no matter what. However, had there not been Christopher Reeve and the Reeve Foundation, I am not sure I would have received the same drug regimens at the first hospital or even been sent to Froedtert for specialized spinal cord rehabilitation. Without Christopher Reeve or the Reeve Foundation proving that people living with quadriplegia can still live full and productive lives, I’m not sure anyone would have had any hope for me at all.

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Five Years

Sunday was the anniversary of a really good day. A great day, in fact. It was the fifth anniversary of the day I was admitted to Froedtert Hospital in Milwaukee, Wis., where I where I stayed for the next two months. I’m sure most people wouldn’t commemorate the anniversary of the day they entered a hospital for two months, but April 11, 2005, was a day that changed my life.

The story really begins five weeks early, on March 2, 2005, when I was admitted to another hospital, also in Wisconsin. (I’ll call this hospital “Hospital X” for the simple fact that I don’t wish to give them free advertising on my blog, for various reasons.) I had been sent to Hospital X from my home in northern Wisconsin because I was having headaches and the doctors suspected my shunt was malfunctioning. (I have Dandy Walker syndrome and hydrocephalus, which produce excess cerebrospinal fluid, aka CSF, in the brain. If the CSF isn’t drained with a shunt, it puts pressure on the brain and bad things can happen. Including death.)

It’s a long story, but while I was at Hospital X, I had a lot of other days that changed my life. On March 5, 2005, I went into respiratory arrest (“coded”). I was intubated, put on a ventilator and transferred to the ICU. On March 6, 2005, I was extubated, after which I promptly coded again. That was fun. During this time, the paralysis settled in and by March 8, 2005, I was paralyzed from the neck down, including my vocal cords. In other words, I became a quadriplegic. I couldn’t speak and communicated by mouthing words and using letter boards. (More on this in a future post.) I spent most of my time at Hospital X in the ICU and experienced many oh-so-fun things like cardiomyopathy, pneumonia, blood clots, a subdural hematoma and countless procedures.

I was really, really, really sick and for a while, they didn’t expect me to live. But of course, I did. In early April, I was well enough to be transferred from the ICU to the regular neurology floor as the social workers and case workers made plans to transfer me to rehab. At that point, I had been in the hospital for over a month. I just wanted to go home. The reality hadn’t set in yet that I was a ventilator-dependent quadriplegic who needed total, and I do mean total, care. And bless me, I thought I could go home to my mom’s house, where she could take care of me 24-7, because moms are super-human, right? Yeah, right.

So it was that on April 11, 2005, I was transferred from Hospital X to the Spinal Cord Injury Center at Froedtert Hospital in Milwaukee, where I spent a week in the acute care. The doctors did their own tests and determined that I had probably had either a brain stem stroke or a spinal cord infarct at the C4 level. After a week, I moved to the rehab side of the unit, where I stayed until I went home on June 9, 2005.

Being in rehab at Froedtert was one of the best things that ever happened to me. (It was unbelievably hard, stressful and exhausting, but still one of the best experiences I’ve ever had.) When I got there, the doctors expected me to be a quadriplegic for life. My physical therapist didn’t care. He decided he would make the most out of whatever time he had to work with me and little by little, just got me moving. By the time I left, I was walking about fifty feet with a walker. I had gotten a lot of mobility in my left hand and arm, thanks to my occupational therapist. The right hand and arm would come back later. My speech therapist rocked so I was even talking again, although I couldn’t swallow well enough to eat. That would happen later, too.

I left Froedtert on June 9, 2005. That was a good day, too. Hard, but good.

I wanted to write this post because I have spent the past month and a half in a state of remembrance. I’ve wanted to talk and blog about my experiences but it’s hard when I haven’t explained the back story. I plan to refer to this post in the coming days, weeks and months so I hope you come back and keep reading. Thanks!

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Call for Interviews: Women with Disabilities and Chronic Medical Conditions

I am not an expert on disability.

I have been hearing impaired my entire life and worn hearing aids since I was three years old. I have lived with hydrocephalus and Dandy-Walker Syndrome since I was diagnosed at five years old. Four and a half years ago, I became quadriplegic after a freak illness. I’ve recovered my mobility but I still have many health problems.

I’ve told my story over and over again not to bore my loyal readers but because I believe it is vitally important to tell my story. I want to put a woman’s face on spinal cord injuries and paralysis.

I think the best way to help other women with paralysis and spinal cord injuries is to tell my story, to demystify this crazy injury. I believe – I hope – that by speaking out, I am empowering others.

However, this is only my story. I would like to hear yours. If you are a (cis or trans) woman with a disability or a chronic medical condition, I’d like to interview you for this blog. I am interested in what it’s really like to live with your disability/condition on a daily basis, how it affects you, any discrimination/barriers you face and even what you like about living with your disability/condition.

If you are interested in sharing your story, please email me at danine@danine.net. I will be happy to work with you to conduct the interview in whatever format best meets your needs.

Cartoon originally from WillDrawAnything.com

Girl Scouts Visit the White House

Check out this picture from the White House Flickr photostream:

Here’s the caption:

President Barack Obama talks with MacKenzie Clare, 14, and the other Girls Scouts after signing the Girl Scouts USA Centennial Commemorative Coin Act in the Oval Office, Oct. 29, 2009. First Lady Michelle Obama looks on at right. (Official White House Photo by Pete Souza)

Once again, I am fascinated by the President and First Lady’s body language. In a guest post for Adventures of a Young Feminist last week, I criticized the writers of Curb Your Enthusiasm for how unrealistic and inaccurate they chose to portray the character of Denise and her interactions with the other characters. Denise couldn’t walk (we never found out why) and used a wheelchair. She briefly dated Larry, the main character, who simply had no idea how to behave around someone with a disability. In fact, he couldn’t really grasp the concept that Denise’s “disability” didn’t preclude her from having feelings, interests and capabilities. Larry just didn’t get that Denise was still a normal human being.

Contrast that with this photo of the Obamas with MacKenzie Clare in the Oval Office. It appears that after signing the bill, President Obama flipped around in his seat to talk to MacKenzie. It looks so casual and natural, just like he would to anyone else who was standing on that side. Mrs. Obama (Can I call her Michelle?) is leaning over the desk, not because she’s bending over to talk to MacKenzie like so many people to do the “wheelchair-bound”, but because she probably can’t hear.

This is an example of how you’re supposed to treat people with disabilities: like human beings. My only real qualm with the photo is that it appears MacKenzie is being singled out to the exclusion of the other girls due to her disability.I hope that’s not the case and that all the girls got some one-one attention from the President and First Lady. Anything else is unfair to MacKenzie. When we’re fourteen, we don’t want to be singled out because we’re different, even if it’s by the president of the United States.

H/T to @veronicaeye who posted this photo to Twitter

Denise Handicapped (Adventures of a Young Feminist)

I’ve got a guest-post up at the Adventures of a Young Feminist blog on the Denise Handicapped episode of Curb Your Enthusiasm.
Here’s an excerpt:

Last week on Curb Your Enthusiasm, Larry meets a woman named Denise in a coffee shop. They flirt and Larry asks her out. Larry is excited about it… until he sees Denise is in a wheelchair.

Larry is clearly repulsed by the idea of going out with Denise but as he tells his friend Jeff, “I was stuck. I didn’t want her to think I was a bad guy.” Jeff tries to reassure Larry that it’ll be okay to date a woman in a wheelchair by saying, “It’s an adventure, it’s an adventure.” Yeah, Larry, dating a woman who can’t walk is like a trip to see the freaky disabled woman in the sideshow at the circus. Who knows, she may even get frisky with ya. That’ll be adventurous, for sure.

Now head on over to Adventures of a Young Feminist and keep reading:

Love Your Body Day

I’m a little late to this, but Wednesday was Love Your Body Day. Rather than do the usual post about my struggle to accept my body because it’s not a size 2, let me tell you why I love my body:

I love my body because it can type this sentence on the keyboard.

I love my body because it can tell my friends and family I love them using my own voice.

I love my body because it can walk across a room, street, block, and keep going a while before I get really tired.

I love my body because it can bend down and smell the roses in my garden.

P1010068

I love my body because it can climb stairs.

I love my body because it can sit upright in a chair, recliner and couch. It can also get in and out of those things without assistance.

I love my body because it can swallow food and liquids (including Diet Coke!) without aspirating.

I love my body because it can read magazines, books and computer screens.

bitchCover

I love my body because it can hug people.

I love my body because it can brush my teeth, wash my face and do other fun stuff like that.

I love my body because it can play with this awesome Super-Soaker I got for my birthday this year.

SuperSoaker

And finally, on a serious note, I love my body because it can breathe on its own and my heart is healthy.

Four and a half years ago, my body couldn’t do any of these things. I laid in an ICU, paralyzed from the neck down. I was on an ventilator and had cardiomyopathy. They were considering a pacemaker. I couldn’t move anything above my neck. I couldn’t speak or swallow. They didn’t know if I would live, let alone walk again. I am lucky to be alive. I am lucky that I am able to experience each new day. I am beyond lucky that I am able to experience these things I listed above every day. The simple act of typing, of moving my fingers because my brain tells them to is nothing short of a miracle. I try very hard not to take that for granted.

That’s why I love my body.
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Conference Call with Sen Jeff Merkley


This afternoon I had the pleasure of participating in a BlogHer conference call on health care reform with Sen. Jeff Merkley (D-OR). Sen. Merkley gave a brief statement on the goals of health care reform, saying that it will have an exchange to allow individuals and small business to buy health insurance as part of a large pool. In addition, there will be insurance reforms and investments in wellness and prevention.

After that, Sen. Merkley took questions from members of the BlogHer community. I got to ask the first question, which I have to admit was a teensy bit cool. Here’s what I asked, kinda-sorta verbatim to the best of my recollection:

“I had a spinal cord injury in 2005 and was paralyzed from the neck down. I regained my mobility but I still have a lot of health problems. I’ve been on disability and Medicaid since then. I am hoping to work my way to self-employment but I need affordable health insurance in order to do that. My guess is that the public option will be my best bet. We’ve heard Sen. Reid say that they’re talking about talking about the public option. So what is the status of the public option?”

Sen. Merkley told me that my situation is a good example of why we need health care reform. He said I would benefit from insurance reforms, such as not being denied coverage to a pre-existing condition. He explained I would be able to go to the new insurance exchange, where I could choose from a variety of difference insurance plans, including “hopefully a public option.” Sen. Merkley told me he is working very hard for a public option. “I think the odds are very good”, he said, speaking of the likelihood of a public option being in the final bill.

Looking back at my notes now, I wish I would have asked a follow-up question. I wish I would have asked what the public option would actually do. Who would be eligible? How much would co-pays, premiums and deductibles be? Would there be networks of preferred providers?

Oh well. Maybe I’ll get chance to ask another lawmaker that question. I hope so.

On to the next question: Audrey from Maine, asked why tort reform wasn’t a bigger part of the current push for health care reform. Sen. Merkley explained that tort reform, which has already been done in some states, has not substantially reduced the cost to citizens. In fact, it seems to have had about a 1% (yikes!) impact on the cost to citizens. Furthermore, he said tort reform would take away citizens’ fundamental right to sue for gross negligence.

Audrey also asked why there isn’t a bigger emphasis on health care savings accounts in the current debate. Sen. Merkley replied that most working Americans aren’t able to put money into a health care savings account. “It may be a nice addition to reform… It doesn’t get to the heart of the problem,” he said.

Susan, from Madison, WI, noted the lack of bipartisanship in the current debate on health care, particularly on the public option and wondered what issues Democrats and Republicans are able to find some consensus on. Sen. Merkley said there was bipartisan support for investments in wellness and prevention, disease management, growing the health care workforce and providing incentives to employees to stay healthy.

Sen. Merkley said the biggest difference between Democrats and Republicans is over the public option. Republicans believe in a for-profit health care system but “I couldn’t disagree more,” he said. He explained that he wants a system dedicated to healing people not to profits and shareholders.

Susan asked the senator what it would take to bring bipartisanship back to the issue of the public option. Sen. Merkley explained that some of the compromises currently being discussed might help, such as the opt-out idea, where states can opt-out of the public option if their governor or state legislatures decide to do so.

The final question came from Karalee in California (sorry if I got your name wrong, Karalee). Her family is uninsured and her son was just diagnosed with diabetes. Karalee asked if health care reform is passed, what will fill in the gaps for families like hers until the legislation goes into effect in 2013?

In my opinion, this is one of the best questions of the day (besides mine, of course). Sen. Merkley agreed saying, “It’s an excellent question. Unfortunately, I don’t have an excellent answer.” He went on to say that he has been asking these exactly questions on Capitol. He thinks that states should be allowed to set up their public options and insurance exchanges earlier than 2013 if they’re ready. Stay tuned, he said, because debate on this issue is still underway.

With that, the conference call wrapped up. Thank you, BlogHer and Sen. Jeff Merkley!

Is the Ms. Wheelchair Pageant Supposed To Be Empowering?

Last week, Ms. Wheelchair 2010 was crowned. I can’t tell you how much I hate this. Supposedly, this is not a beauty pageant, but “a competition based on advocacy, achievement, communication and presentation to select the most accomplished and articulate spokeswoman for persons with disabilities.” According to the Ms. Wheelchair America, Inc. website. Ahem.

That sounds really noble, doesn’t it? But when you strip it down, it’s still a competition of who is the best woman, who gets to wear the pretty sashes and tiara. You can pretty it up with platitudes about providing “an opportunity for women of achievement who happen to be wheelchair users to successfully educate and advocate for the more than 52 million Americans living with disabilities” but at the end of the day, it still reminds me of JonBenet Ramsey in a wheelchair.

I know this is supposed to be empowering, but it just makes me cringe. I used a wheelchair for the better part of six months. I was supposed to be a quadriplegic for life and without a few miracles, I probably still would be. I still have power wheelchair sitting in my den. The battery is dead, but it’s there, in case I ever need it again, a possibility that can’t be ruled out. I feel guilty speaking for those who use wheelchairs because I can walk now. However, I do have some internal organs that are still paralyzed and my nervous system will never fully recover from the paralysis.

On Saturday, it will be four and a half years since the incident that caused the paralysis, but it feels like hours, days or weeks ago, not years. I still wake up every day and expect to not be able to move my arms or legs. I feel like I don’t have a right to criticize this competition but I know that if I were still using a wheelchair today, I would have the same reaction to this pageant.

On the other hand, I don’t want to criticize the women who have taken part in the pageant. Autumn Grant, who was Ms. Wheelchair America 2007, told disaboom.com:

“I realized that just because the contest had the words ‘Ms.’ and ‘pageant’ before and after it, it wasn’t a beauty pageant,” says Autumn. “I saw it as a great opportunity to get my ideas and voice out there for myself and others with disabilities.”

This year’s winner,  Erika Bogan, became paralyzed from the knees down seven years ago in a domestic violence-related car accident. In an interview with News 14 Carolina, she said,

“This wheelchair is such a blessing to me, and being in the accident I was in was a blessing,” she explained. “I wouldn’t be where I am and I definitely wouldn’t be who I am if it wouldn’t have ever happened…  My story was basically my platform for nationals, and [that story is:] anything’s possible.”

It takes an enormous amount of courage to simply to tell one’s story and I applaud Ms. Bogan for that. I am also the first person to applaud her for being an advocate for other women with disabilities and victims of domestic violence. I love that.

I don’t want to tear these women down. They’ve been through so much in their lives. If our positions were reversed (I was in the pageant reading this blog post), I would feel so hurt and angry. But I hate the pageant concept. There’s just got to be a better way for women living with paralysis and other related disabilities to advocate for and empower each other.