Diary of an Activist

I was thinking earlier that a whole bunch of people should write CNN (Anderson Cooper) and MSNBC (Keith Olbermann) requesting a story on people with disabilities in Hurricane Katrina and now Rita.


The disabled community had a leader once, Justin Dart Jr. Father of the ADA. A man I met once when, in 1996, he spoke at a local community college. He was amazing, and when I finally met him I was too awestruck and shy to say much. I was in the prime of my advocacy, constantly fighting something at the college I attended.

You have to know our history before you can even begin to know the mindset. The holocaust, forced sterilization, various civil rights laws that granted disabled people an equal education (which is, in itself, a long discussion up for debate) or equal access (also up for debate), not to mention mercy killings and assisted suicide. Our movement is far from young, and also far from over.

We need to become an organized minority group, a group that is recognized but also seemlessly integrated into society. While that is still in the (hopefully not-so-distant) future, it needs to start now. I try not to get upset about the scattered state of our activism, but it's difficult to ignore.

Which brings me back to the present idea of writing CNN and MSNBC, and the scattered ideas of what publicity our community needs. Yes, if those news stations did a story, there would, most likely, be a pity or inspiration theme. While I agree publicity like that isn't great, in the current situations any publicity would help.

I'm proud of being disabled, not ashamed of it. I don't mind people looking at me, but I do mind. It's the Hockenberry principle: Everything you think about me is right. Everything you think is wrong. I want to be seen as an equal, not as the girl in the chair. I'll ask for help when I need it. If you want to know my opinion, I'll tell you. I don't want to walk, don't need to. I just want to be me, whether I'm in a power chair or a hospital bed.

I'm not afraid of speaking my mind, but I also don't need to talk if I have nothing to say. I'm political, liberal, and getting more so the older I get.

Disability culture exists, and it is a big part of my life. We deserve equal rights and equal access. We are a social and political minority group, not "patients" or "clients".

We need to lead on, as Justin Dart has always said.

Hurricane Katrina

In NOLA, 80% of the city's population evacuated before Katrina arrived. Of the other 20%, some of the people chose to wait out the storm, but the majority of those left behind had no way of getting out, or even get to the Superdome. It was a lack of means, whether financial or physical. But just imagine if you lived in New Orleans and were disabled, unable to drive a car, living on governmental benefits. Imagine you were unable to ride a regular bus route and relied on paratransit services, a service that under normal circumstances requires at least 24 hours notice for a ride. You have no money for a cab, if there even are wheelchair accessible cabs in NOLA. Who knows whether the buses were even running when the evacuation orders came down, or whether paratransit buses were used to help transport disabled people to shelters. Call me jaded, but I doubt that happened.

Disabled people all across the Gulf Coast most likely had a very difficult time evacuating. Unless you know someone or a kind stranger helps, it is at the very least difficult, sometimes impossible, to evacuate to higher ground. If someone does get to a shelter or elsewhere, the question of getting needs met is one of the highest priorities. It's hard to admit that those of use with more severe disabilities are left helpless, but that's the reality. We rely on others for help a majority of the time, and sometimes we can't live without it.

We have seen images of people in NOLA on rooftops, climbing up through attics to escape the rising water. People in Mississippi and Alabama also had flooding and major destruction. Most people with disabilities cannot climb trees or rooftops to escape floodwaters, nor can they walk miles to get help or escape danger. It makes me so sad to think about the people who had literally no way out, no way to escape floodwater. People who may have survived, but can't get anywhere because of debris. People who have no way of going to the bathroom, or getting out of their wheelchairs. The people who lost their wheelchairs and are stuck where they are and waiting to die, who lost hope after days of waiting for someone to find them but helpless to wave a towel to signal help.

Governing Life

Everyone who thinks it's easy or even moderately possible to get off
welfare or governmental benefits needs to wake up. Read the rules,
talk to people who live their lives by the system. Stop postulating
and actually take the time to educate yourself.

Some people say they'd love to get a check every month for doing
nothing. Well guess what, we can trade. Most people getting those
checks would rather work for a living, be able to afford to live a
middle class life. The monthly government check is, in most if not
all cases, barely enough to rent an apartment. You then have to
submit paperwork to get a governmental subsidy so you have money left
for food and other basics. If you're lucky, you will have a few
dollars left to "play" with. You think anyone would choose that life?

A system meant to help people get on their feet has become a system
that traps people. There are so many rules as far as what you can or
cannot have that attempting to hold a minimum wage job would reduce
benefits so much that you would be struggling even more. The only
real, but hardly realistic, way to get off a life of benefits is to
make more money than someone would receive in benefits.

There is then the question of health care. The government passed the
Work Incentives Act, which now allows a person with a disability to
make more money before losing health care. Even with that provision
you still have a cap on income, and with insurance companies rejecting
anyone with pre-existing conditions it's impossible to get private
health insurance.

This system that was put in place to help people does anything but.
The goal should be to help people live independently, not trap people
within a system so difficult to break free of.

Body Image

It's been a zigziag of sorts dealing with body image.  I do care, I don't care, I do care.  It goes in cycles.  My philosophy still says you should be proud of your body and not worry what others may or may not think.  However, this philosophy is easier in theory than in practice, especially in today's social climate.  Mainstream media berates us with images of rail-thin women, who try to tell us how we can look better.  I don't know who to blame for this vicious circle.  The media puts those images in magazines, movies, and tv because that's what sells.  So are we to blame?  Or are they to blame? Back when Marilyn Monroe was at her peak, she wore a size 12.  How did we go from there to here, when it is more common to see female celebrities in a size 2 or 4?  

Body image also comes into play when talking about a physical disability.  How is someone supposed to love themselves, love their body, when society wants to change you.  Sit straighter, walk this way, move this way.  It's hard to draw the line between body image and how you physically move, or don't move, and the way that's viewed by people.  I'm not sure a line even exists, and if it does it is horribly blurred.  

It's hard to grow up in this day and age, when how someone looks is so important.  But until we start being more accepting, nothing will change.  We are the consumers, and we drive what the media serves us.  We are the ones who are always trying to eat better, look better, live better.  But ultimately, we will only feel better doing what we want, looking the way we want, moving the way we want, and not trying to be someone we are not.  Try being yourself, and you may be surprised.

Million Dollar Death Sentence

"Million Dollar Baby" has gotten a lot of attention, both in mainstream media and in disability magazines that have yet to catch mainstream attention. They offer two separate opinions and reviews on the movie and its theme. The two perspectives shall never twine, which is a shame and a crime. The disabled community gets a barrage of information from mainstream media, but our thoughts and opinions are not shown unless we agree with what is being written.

This goes well beyond just a movie. I fully realize it is just a movie, just a story from someone else's perspective. I'm a writer also, and so I concede that point. But considering the social climate, making a movie in which a quadriplegic asks another person to help her die is asking for controversy. So much of society believes in the credo "better dead than disabled", and even though times and opinions have changed, the current climate is added to our history of euthanasia and sterilization to further our anger.

People claim that, as they age, they don't want to be a burden. I posed this question to someone and asked if I, as a disabled woman, am a burden. The answer was no. How do you separate those two conflicting statements? "I don't want to be a burden on others, but you're not a burden as a disabled woman." That makes no sense, as you can't say one person is a burden, and turn around and say someone else who is already disabled isn't. I realize a number of disabled people feel like burdens, burdens on society.

As a society, we have come a long way from when, in the 1920's, almost half the states in this country sterilized disabled people. That fact, along with the fate of the disabled in the Holocaust, is not commonly known. That history definitely plays a part in the disabled community's outrage at movies that spread the idea that we are better off dead than disabled. It's a myth so many organizations and individuals have tried to combat.

After an accident, it's natural that someone is going to think of death. But just imagine what would happen if society didn't agree that death is better than disability? What if you never had to hear someone say, "did you want to kill yourself," or "I wouldn't want to live like that."

Wouldn't that be a great place? A place where someone wasn't disregarded as a person just because they are disabled, it's a novel idea. Maybe someday it'll happen.

Silent No More

For too long, disabled voices have been hushed. Mainstream media doesn't tell our stories unless we are "inspirational", and in TV and movies we are either an inspiration or a villain. Our lives are disregarded, and parts of society believe it's better to be dead than disabled.

We won't be silent any longer.