My name is Dri… short for Adrianne

This seems to be a contentious subject amongst those who want to insist that I am, now, exactly who I was when I was born. Adrianne is a beautiful name, I agree. But it has never felt like “me.” You may argue “a rose by any other name would still smell as sweet” and I would say, Yes! No matter what I call myself, I’m still me – on a molecular level. However, we live in America – Land of Self-Actualization. This means one has the obligation to make mistakes – leading to opportunities to reinvent themselves until they get their “self” “right.” I mean, our current president is Donny T! Like Donny T., I am not destined to be defined by my past mistakes, or even my past success! Both can be learning experiences, leading me to my Now.

I’m lucky, though. While I can’t say I’ve had major successes, I haven’t failed majorly, either. Yeah, there’s debt, and the soul crushing feeling of “D’oh!” when reminiscing about past partner choices, and unfinished projects… always unfinished projects… …

Could someone interpret my mistakes as reason to deem me a criminal? I don’t know. I hope not! But, if they can, I hope the statute of limitations have passed! But what about those who can’t say they’re lucky enough to just have not been caught? Or they have enough resources to have a defense that will really fight for them? What about those who plead guilty for something they didn’t do – out of fear? Convicts, so deemed for the rest of their lives, are denied their voice in our legal system – an inherently racist and classist institution that they can’t vote to change. Our system has literally ball-gagged those who have the knowledge and experience to backup the need for prison reform. Why do we insist on maintaining the status quo, when true rehabilitation would improve everyone’s quality of life?

I want to give voices back to those who have had their voices stolen – and empower those who never knew their voice mattered to speak up! How do I go about doing that?

Comorbidity: When the Things I Struggle with Aren’t the Things You’d Expect

In my case, Arthrogryposis Multiplex Congenita – or AMC (you’re welcome) – is a physical disability that involves multiple contractures in all my joints, thus reducing range of motion, thus exacerbating muscle weakness. I’ve had multiple broken bones and multiple surgeries because of the AMC. The surgeries started with a gastrointestinal tube so I could eat when I was only two weeks old, and ended with a major spinal fusion when I was seventeen years old. Sandwiched in between were some tendon releases, multiple feet “restructurings” to eliminate clubfoot, and sprinkled in were accidental broken bones. I’ve had physical therapy sporadically throughout my life, which would be great if I liked to exercise, but I don’t – like most of America. I now use an electric wheelchair to get around after many, many years trying not to “give in” by using leg braces to walk. Needless to say, I’ve had quite a few bouts of “discomfort” in my life, and one might expect that to be my primary struggle – but, it’s not.

With AMC, I know what I need to do to get out of bed and function throughout my day. It’s not easy, but it’s simple. Generally, I wake up, pet my dog and kiss my fiancé (usually, in that order), wiggle out of bed, unplug my wheelchair, roll to the bathroom and do what’s necessary to – you know – go to the bathroom, greet my caregiver, she helps me shower and dress, she helps make food and clean up and leaves, I eat breakfast, and get to work (if I’m having a “good” day). You get the idea…

My “good” or “bad” days have nothing to do with AMC, I struggle with depression – seriously – on a daily basis. My AMC “struggle” doesn’t even come close to the war zone that is my depression. I know how to get out of bed and function, but the depression depletes the drive to do so. On my bad days, my depression will fight tooth and nail to keep me in my bed with my dog, and it wins a lot. On my bad days, only roll out of bed to use the bathroom, help my fiancé with his physical needs (he has Muscular Dystrophy), and (maybe) eat if I’m feeding him anyway. On my bad days, I can’t keep track of time and have earned the reputation of being “flakey.” On my bad days, it’s almost impossible to do the simple things, like brush my teeth or change my clothes. On my bad days, I can barely stand being around anyone, even my fiancé whom I dearly love for many reasons – even on my bad days. Sometimes, I feel terrible for making him love me because of my bad days – but that’s a subject for a different day.

Comorbidity is having symptoms of two different, chronic, afflictions at the same time. Having AMC, which is visibly a little weird but manageable, made me feel as though I just had to compensate in society with my spectacular personality. The depression, however, took the desire to manage and made things just weird.

Avatar – An Awful Portrayal of Disability

I wonder if James Cameron has any experience with disability – at all.  Sam Worthington did a beautiful portrayal of having an SCI (although, I wish they had used an actor who actually had an SCI, but that’s a whole other rant). My WHOLE issue with the portrayal of disability in Avatar is that the answer to the question, “is there anything in this life worth living for despite having a disability?” was assumed to be “no.” The question wasn’t even addressed! Of course someone who had to use a wheelchair would become another species to avoid being stuck with a disability!

What?! Why was the character written as having an SCI in the first place?! It didn’t add anything to the movie or the character except allowing the audience to empathize with his appreciation with having abilities in his avatar that he had lost in real life. If he had an injury that temporarily disabled him, that empathy would still be there, but the question couldn’t have been so blatantly ignored!

There aren’t that many (are there any?) blockbuster movies out there portraying disability, and when there is one, the disabled community is being represented in an inaccurate way. It’s no wonder that so many able-bodied people feel pity for me! In their minds, I would rather be a different species, on a different planet, than be stuck in my wheelchair on this planet! Like, there’s nothing here for me, and I’m just waiting to die.

So, in my opinion, Avatar was an offensive movie, not only because my mass-media representation is depressing and biased, but also because it was another movie where the “white man” comes in and saves the “savage natives” (again, whole ‘nother rant).

Rawr!

Quality Adjusted Life Year (QALY) Standards of Persons with Disabilities

A while ago, I read this article (http://www.nytimes.com/2009/07/19/magazine/19healthcare-t.html?pagewanted=1&_r=4&hpw) that my friend posted on Facebook. Understandably, she was outraged by this:

Health care does more than save lives: it also reduces pain and suffering. How can we compare saving a person’s life with, say, making it possible for someone who was confined to bed to return to an active life? We can elicit people’s values on that too. One common method is to describe medical conditions to people — let’s say being a quadriplegic — and tell them that they can choose between 10 years in that condition or some smaller number of years without it. If most would prefer, say, 10 years as a quadriplegic to 4 years of nondisabled life, but would choose 6 years of nondisabled life over 10 with quadriplegia, but have difficulty deciding between 5 years of nondisabled life or 10 years with quadriplegia, then they are, in effect, assessing life with quadriplegia as half as good as nondisabled life. (These are hypothetical figures, chosen to keep the math simple, and not based on any actual surveys.) If that judgment represents a rough average across the population, we might conclude that restoring to nondisabled life two people who would otherwise be quadriplegics is equivalent in value to saving the life of one person, provided the life expectancies of all involved are similar (New York Times, July 19, 2009).

In this excerpt, there is an implicit assumption that the life of a disabled person is approximately half the worth of an able-bodied person. Even if they are hypothetical figures, they’re offensive and grossly inaccurate. Having a disability of my own, I know that I am destined to have fairly expensive life-style that has to do with my Arthrogryposis, with adapted cars, showers, wheelchairs, braces, walkers, etc. that able-bodied people just don’t have to worry about. With Universal Heathcare on the table, I can understand how putting a price on someone’s life can be a very difficult task. Peter Singer, the author of the article, argues that the QALY measure should be used to objectively standardize this very task.

Admittedly, this task is immeasurably difficult to accomplish. How does one put a monetary value on extending someone else’s life? This is so difficult and subjective, to say the least. With the Universal Healthcare Debate on the table, it has become very relevant to most and very scary to some. For example, if I got a cancer – right now, at the age of 25 and physically disabled – my QALY score would be lower by default because I’ve been using a wheelchair most of my life. So, economically, extending my life another year or two would be more burdensome than extending an able-bodied woman’s life for the same amount of time, even though my physical disability has nothing to do with the cancer and does not decrease my life expectancy by default. How would political bureaucrats take that into account when making the decision  to pay for my treatment or not?

Of course, resources are limited, as they have always been. And, I agree that my life may not be as valuable to society as, let’s say, the President (ok, that’s a dramatic example, but let’s go with it), and if the government had to decide between saving my life and the President’s, I would justifiably expect them to save the leader of our country. However, when it comes to a decision between my life’s worth and the worth of another random, able-bodied, 25 year old, female graduate student’s life, I would have a much more difficult time saying my life isn’t worth as much as her’s. Our potential for positively contributing to society is approximately equal (well, I’d like to think so), but because I may require assistance with something as simple as mobility, my life is assumed to have less quality than my peers’. Personally, I find this ridiculous.

So, what can we do about this grossly inadequate measure of the worthiness of one’s life?

Well, if you want to know what I think (which, obviously, you do…), I believe wholeheartedly, that the thought processes and stereotypes about the lives of persons with disabilities needs to change within the society. The mainstream community doesn’t realize that living with a disability can, at times, contribute to a person’s quality of life in a positive way. Yes, of course it’s difficult, and of course it sucks sometimes, but it also enable’s a person to view the world from a different perspective. (No, I’m not just talking about the perspective of being an expert on belt buckles.) And, if you have been disabled for some time, you realize that coping with your own limitations is easier than it seems to the able-bodied people around you. I can live a perfectly happy, productive life as a disabled woman and my quality of life is no more or less than someone else with a similar mindset.

I call upon you, society, to ask for a new way to measure the quality of someone’s life BEFORE we pass a law that would discriminate based on disability! Even if it’s not about money, I ask you to think of me as having the potential – no, to EXPECT me – to contribute to you in a meaningful way and earn my keep, so to say.