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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Mad Men, Disability and Vietnam

Mad Men is back for its fourth season and the core gang from Sterling Cooper have jumped ship to start a new agency. In Sunday night’s season premiere, Don was interviewed by a reporter from “Advertising Age” magazine in an attempt to gain publicity for the fledgling enterprise. The interview took place in a fancy-schmancy restaurant and, as usual, Don had trouble divulging any precious details about himself. Thus, the interview was a disaster and Don knew it. Roger and Pete joined Don and the reporter at the end of the interview. When the reporter got up to leave the table, he stumbled, revealing a detached proesthetic leg. When questioned, the reporter said his leg had been amputated as a result of an injury sustained in the Korean War.

Don, Pete and Roger’s reactions to this man’s disability were fascinating. Don accepted it as it was, which is his usual modus operandi with disability. He seems to treat it as private matter, as though it would be disrespectful to even acknowledge it. For example, he never seemed to notice his “ex-wife” Anna’s limp, he chatised the boys for laughing about Freddie Rumsen’s alcoholism (“It’s only a man’s reputation”) and he told Peggy to bury any memory of her time in the pychiatric hospital (“It will shock you how much it never happened.”)

Pete was politely inappropriate, of course. “Thank you for your sacrifice,” he told the reporter. Pete, being Pete, was referring to the reporter’s missing limb, not his war service or time spent away from family and friends. Pete was not expressing empathy for physical pain, illness and post-traumatic stress the man probably experienced as he recovered from the war and his wounds and surgeries. No, Pete was thanking him for going to war, taking the hit and “suffering” the stigma of disability so trust fund babies like him didn’t have to. (Yes, I know: Pete’s dearly-departed daddy spent every cent but he’s still got his darling Trudy, right?)

And then there’s good ol’ Roger Sterling. His was the most intriguing reaction of all. When it was clear the interview hadn’t gone well, Roger chewed Don out for half a second for being his usual laconic self and then took the heat off the golden boy by blaming the magazine. “Why’d they send half a reporter, anyways?” he snapped.

Half a reporter?

Oh, Roger.

Rather than lambasting the reporter for shoddy journalism, Roger equated the missing limb with professional ineptitude. He blamed the man’s disability, not his poor interviewing skills or lousy writing. It was a cheap shot but Roger is not alone in thinking (or saying) such things. The idea that having a disability is dehumanizing, that it makes one passive, weak and “less of a man” is well-ingrained in our culture.

But why did Roger say it? We don’t know a lot about Roger. While he seems to have found happiness with Jane (for now), the sharp barbs and acerbic wit are definitely a defense mechanism. But for what? We know that Roger has something of an inferiority complex, having ridden his father’s coattails to success on Madison Avenue. (The “Sterling” in Sterling Cooper is for his dad, Roger, Sr.)

We also know that Roger is a WWII veteran. Roger’s time during the war remains a black hole, as empty as the reporter’s wooden leg. What happened during the war, besides the fact that he loved and lost Annabelle? How do all of these factors combine to produce a spiteful retort like, “Why’d they send half a reporter, anyways?”

I don’t know. I find it curious that this was the very first scene of the new season, which takes place in 1964 as the Vietnam War really starts to get heated. This promises to make things very interesting for the new Sterling Coop: Joan’s hubby Greg is in the Army, Pete brought a defense contractor (North American Aviation) with him from the old agency and you know Sally is going to be a love child. As the war progresses, the wounded warriors will be coming home, many of them with permanent disabilities. Disability will be fundamentally changed during the Vietnam era, as the disability rights movement formed during the ’60s and ’70s to fight for deinstitutionalization and equal access to housing, employment, transportation, health care, education and much more.

How will the Sterling Cooper (Draper Pryce) folks handle all the changes the war will surely bring? Will it change how they see disability? I’ll be watching to find out!

.

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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

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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

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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:

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Recommended Reads for Week of Oct. 10, 2009

I’m starting a new feature here on the the danine.net blog. Each Saturday I’ll do a roundup of the blog posts I found most compelling that week and post them. I hope you enjoy it and find something interesting to read. Best, Danine


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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.

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Thank You, Senator Kennedy

When Sen. Kennedy died and the obituaries and memorials started pouring in, I was shocked to learn about the number of laws he had been responsible for. Many of these have transformed my life personally so it seems appropriate to take a moment to say thank you:

Thank you, Senator Kennedy, for the Americans with Disabilities Act. As a person living with a hearing impairment since birth, I will never know how much this act has improved my life.

Thank you, Senator Kennedy, for the Fair Housing Act Amendments of 1988 (FHA) which extended the Fair Housing Act of 1968 to include people with disabilities and families with children. Looking back, the FHA and the ADA were probably the laws that required the residence hall staff at my alma mater, Minnesota State University, Mankato, to install visual fire alarms in my dorm room. (Because of my hearing impairment, I can’t a fire alarm when I’m asleep with my hearing aids out, therefore I need a visual cue that all hell is breaking loose.)

Thank you, Senator Kennedy, for the Individuals with Disabilities Education Act, which guaranteed a free and appropriate public education to children with disabilities, regardless of their severity, in all states. Even though I had a severe hearing impairment, I went to public schools and got a great education.

Thank you, Senator Kennedy, for supporting Title IX. I have never known a world where it is not normal for there to be a girls’ track, cross-country, swim, gymnastics, volleyball, basketball or soccer team. Without Title IX, we would not have the WNBA. Without Title IX, I probably wouldn’t know my best friend today, who decided to attend MSU, Mankato partly because of its women’s hockey team.

Thank you, Senator Kennedy, for all of your work on behalf of vocational rehabilitation, student loans, food safety, generic drugs, the list goes on and on. I am humbled when I realize how much of your work affects me on a daily basis.

Most of all, thank you, Senator Kennedy, for your work on behalf of universal health care. Yes, “the work still goes on”, even though you’re not here, but don’t worry: We’ll finish the job. There will be quality, affordable health care for every American.

Thank you, Senator Kennedy, for being a great senator, a great liberal, a great Catholic and a great American.

Thank you, Senator Kennedy. May you rest in peace.

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About Last Night('s Health Care Rally)

Last night, I went to a pro-health care rally organized by Organizing for America. When I got there, there were lots of people holding signs and the crowd was mixed fairly evenly, half pro-reform, half against.  Some of the anti-reform signs were hideous so I took lots of pictures.  I had to laugh to myself as the pro-reform crowd tended to congregate on the left side of the grassy square while the antis were on the right. I don’t think this was intentional but it was still amusing, nonetheless.

When the rally got started, one of the first speakers was a woman in her sixties or seventies (I’m horrible about guessing ages). She talked about the thousands of dollars of debt she and her husband incurred when he had a lengthy stay at a long-term care facility. In addition to Medicare, they have a supplemental health insurance policy, which was supposed to reimburse them for their upfront costs, but of course, the insurance company never did.

While the woman was speaking, I heard a lot of murmurs and mumbling and grumbling behind me. I was pretty obvious the anti-reformers didn’t understand the moral of this woman’s story: the need to reform the insurance industry.

Another woman spoke who was a former mayor (or high ranking official) from De Pere, WI, which is by Green Bay. I thought she was pretty antagonistic towards the anti-reformers. She kept saying, “If you’re happy with the status quo…” and then throwing out statistics like, “In the last nine years, insurance premiums have gone up 90% for the average Wisconsin family.” I have no idea where she got her information from, as she didn’t tell us. It’s become a pet peeve of mine that people in positions of authority throw these fancy figures around to impress us and then expect us to believe them without batting an eye. Unfortunately, that happens far too often.

I digress. My apologies.

Back to the woman from De Pere. She wasn’t giving a speech. She was giving a lecture to the anti-reformers.  It wasn’t effective because it didn’t open up the dialogue. When you talk down to people, they’re not going to listen to you. I’m fairly certain she did not change a single person’s mind about health care reform last night.

A local dental hygienist who is a breast cancer survivor also spoke. She and her husband, a veterinarian, buy private insurance at considerable cost to them. It’s very expensive but at least she has insurance. She was grateful she was able to receive treatment for her breast cancer. A friend of hers wasn’t so lucky. When she found a lump, she had to save for two months in order to have enough money to go to the doctor. The friend had to save money for another couple months to go back to have testing done.

The dental hygienist also told us about another friend who died several years ago because she couldn’t afford her seizure medicine.

Dr. Tom Gabert, an internist in Minocqua, WI, was the keynote speaker. (I looked up his name, heh. I apologize for not knowing the others.) He talked about reforming health care to make medicine more patient-centric not money-centric. He said money is always the number one topic of discussion when it comes to health care, not prevention or wellness. He told us about the countless patients who have asked him to lie about pre-existing conditions so they can get health insurance.

Dr. Gabert said many of his colleagues have left medicine because dealing with health insurance is so difficult. He added, “which is a form of rationing, by the way.” He went on to explain that the health care industry is driven far more by profit than by actual health care. For example, they (clinics and hospitals) make the least amount of money on women and children but they spend a lot of time wooing that demographic anyways. Why? So moms and kids convince Grandpa to come to their hospitals and clinics for hip replacements (and other old man stuff), which is profitable. Another example: the fancy helicopter services and heart care clinics being advertised on billboards, in newspapers and on television. The health industry spends big bucks trying to impress consumers to come to their clinics and hospitals based on their shiny new toys and pretty new facilities (sarcasm is mine) rather than spend money on keeping people healthy.

Dr. Gabert also spoke of the need for malpractice reform, which got big applause from the anti-reform crowd. They apparently think limiting the amount a doctor can be sued for medical malpractice is the magic panacea to the health care crisis. Good grief.

Another local physician, a pediatrician whose name I didn’t catch, spoke briefly about how important it is for kids to have health insurance. He said he believes Medicaid and S-CHIP are very good programs but unsustainable. He advocated a “Medicare for all” type of system.

The Anti-Health Care Rally

After the rally was over, the anti-reformers gathered on the right side of the square. I had been about to leave but I waited to see what was about to happen. Who doesn’t like a good train wreck, you know?

The first speaker was a middle-aged woman (I probably shouldn’t say that as she wasn’t that much older than I am). I couldn’t hear everything she said, but what I did hear alarmed, to say the least. A sampling:

  • “I don’t like Obama” after which somebody called out, “Where’s the birth certificate?” I only heard that once, though. Kudos to my fellow Hodags for (mostly) staying classy.
  • “I’m not against reform.” She continued on to say that she has worked all her life and put into the system. At this point, things got a little noisy and I honestly don’t know what she said next. I think she said she was entitled to her Social Security and Medicare but I can’t be sure.
  • She asked if anyone watched Fox News and Glenn Beck. She said she learned from watching Glenn Beck that if health care passes, Obama won’t cover babies up to two years of age. Yes, you read that right.
  • She brought up the “death panel” concept, saying that people over 65 wouldn’t have health insurance anymore. At this point, I raised my hand. All night, the need for civility and respect had been mentioned over and over. I didn’t want to be rude and heckle her so like a first grader, I raised my hand to ask a question. Since she brought up the “Obama wants to kill Grandma” idea that originates with the living will provision, I wanted to ask her if she had a living will. Of course, she never called on me.

The next person to speak was a man who said he worked with employers all over the country.  He said employers were very concerned about health care reform, to which the anti-reformers cheered.

I couldn’t figure out why. Why did these people care more about employers and businesses need than what we the patients need? Aren’t we all patients and human beings first? When you get laid off, your employer doesn’t give a flying fig if you have a migraine and need Imitrex or that you still have cancer and need radiation. They just don’t care. What the heck are these people thinking?

Well, by then I’d had it. When the gentleman was done speaking, I saw my opportunity and took it. These people needed to know what the stakes were. They needed to know that socialized medicine wasn’t evil, that human lives, indeed, my life was more important than all of this insanity that’s been going on lately.

I walked up to the picnic table and stood up on one of the benches.  I don’t have great balance so there was no way I was going on top of the picnic table.  The lady who spoke first at the anti-rally saw I was wobbly and came to give me a hand. (I appreciate it. ) Everyone looked at me expectantly.

Here’s what I said:

Four years ago, I was paralyzed from the neck down. I was four months away from being kicked off my parents’ health insurance so I was eligible for BadgerCare and Medicaid. This is the face of Medicaid. (I whipped my sunglasses off, hoping it was very dramatic.) I understand the budget and financial concerns, but this is about real people. This is the face of Medicaid.

Without my prescription sunglasses on, I couldn’t see anything. I could hear some murmurs and grumbling, though. I hadn’t planned on saying anything so after I spit out those few sentences on impulse, I had no idea what came next. I got down from the picnic tables and left the rally. By the time I got to my car, I was in tears. I was angry at the anti-reformers and at myself.

I was angry at the anti-reformers for allowing their racist and paranoid thinking to get in the way of my life and death need for health insurance. Instead of just listening to Glenn Beck and Fox News, they should be doing their own research. Read the damn bills and proposals, particularly the parts that controversial or confusing. Try and understand why we need health care reform. Contact your congressional delegation, express your concerns and ask them to handle this responsibly.

Please.

Please don’t tell me we don’t need anything to change.

I was also angry with myself. I had the bully pulpit for a few brief moments and I felt like I wasted it. I could have used it to advance the conversation but I don’t think I did. I wish I would have said,

This happened to me. Medicaid paid for services private insurance would not have and kept me out of bankruptcy at 25. As I try to work my way off disability and towards self-employment, I need low-cost health insurance. I think a public option would be a good idea, in addition to employer-sponsored policies, private insurance, Medicare, Medicaid and the like. I understand there are concerns about the budget and debt but simply saying no is not an option for people like me. Can we come up with another answer?

In the end, I don’t know what good will come of any of this. I wonder if I’m just needlessly stirring the pot by writing about my interpretation of last night’s events. I wonder if any of this is worth it.

This morning I had a doctor’s appointment in Wausau. It was a check-up and relatively minor. On the ride in and while I was at the doctor’s office, I was filled with a profound sense of gratitude that I do have Medicaid, that I am able to go to the doctor when I need to.

Someday, a day that I hope will come sooner rather than later, I will get off disability and Medicaid, but for now, socialized medicine has a place in society. It even has a face and it’s not some bizarre mockup of Barack Obama as Heath Ledger as The Joker.

I am the face of Medicaid. I am the face of socialized medicine. I am the face of health care reform.

It’s that personal for me and millions of other Americans.

We have to get it done.

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