The Choices of Life in Disability

A long time ago, a friend of mine who belongs to the Nakota branch of the Assiniboine Sioux people of Montana told me about how her tribe's religion views disability. She told me, essentially, that they believe that before I was born, I chose to become autistic, so that I could have my own unique life path and learn from it, even though I knew sometimes it would be more difficult. She told me this applies to all people with developmental disabilities, not just autism.

It got me thinking about a wonderful children's book I read when I was young: The Mountains of Tibet:

In the book, a young boy is born, where else, but the Mountains of Tibet. He notices, at a young age, the cosmos stretching out above him, and declares, "There are other worlds out there. Some day I will visit them." He declares his wish to visit not only the cosmos, but other countries, other people. He never does leave his valley though, and when he dies, he is given a chance to choose either to go to "The endless paradise some call heaven, or you can live a new life."

As he chooses to live a new life, he gets to pick the details of the life he will lead: Where he will live, who his parents will be, the colour of his skin, the nationality of his people, and finally, his sex, opting to be a girl, feeling that he used to be a boy in a previous life.

I don't 100% agree with the notion that we could choose our destinies and our life-paths before we are born; namely, the major wrench in the theory for me is my girlfriend, who was born with a male sex, but identifies with the gender of women. I'm certain that if she had been given the prenatal choice of her sex, she would have rapidly accepted being female. Or perhaps she chose specifically to be trans. It's a difficult path to follow, but it is a powerful one, and she and I are both stronger women now for helping each other as she transitions. Could there be more to that than I initially thought?

Primarily though, I thought about my autism. If I had been given such a choice, would I choose to be autistic? I will be the first to admit it can be difficult. Most of the struggles in my autism manifest from external forces, such as intolerance, misunderstanding, and neurotypical insistence on conformity. But I will not deny the pain in the ass that comes from having my ears work too well one moment and not work at all the next, or having to deal with sudden surges of dizzy light-shows in my brain, and other side effects of not processing everything the way neurotypicals do and expect all others to do.

However, I would keep my autism, no matter how many times I was asked, no matter how many theoretical lives I was reborn into. I hope I would remain autistic for all lifetimes, and, if there is such a thing as a soul, I do believe my soul is autistic.

So much of what I know, how I know it, and how I learned it, is tied to me being autistic. Every day, it proves to be exhilarating, and yet humbling and character building. Without my autism, I never would have realized the extent of my own strength. My disability is not romantic. But it is powerful, and above all else it is mine. If I chose it before I even knew my own name, I can accept that. Some might interpret it as my "cross to bear", but I think of it as my own path to walk. And let me tell you, the flower smell sweeter and the bird calls are much easier to hear when you have autism.

A quick link: Our Voice: Rethinking Autism

I saw this on a friend's facebook page. I recognize a few of the names on there, such as K Bjornstad, the beginner of Autistics Speaking Day and blogger at Katy Doesn't Live in Smithton, and Steven Knapp, whom I'm collaborating with on a project.

Enjoy Our Voice: Rethinking Autism: Here at this page:

http://www.rethinkingautism.com/RethinkingAutism/Our_Voice.html

Quick hit: Et Tu, Cho?

So, today I saw a plug for Autism Speaks on Margaret Cho's facebook page. Specifically, supporting the damn Gold Bunny. If you enter, you may win one signed by her. I'm bloody used to celebrities betraying me by supporting Autism Speaks. The biggest hurt of all was that awful "I am Autism" video made by Alfonso Cuaron, one of my favourite directors. -sigh-
So here is what I wrote on Margaret Cho's link to the contest. If she actually looks at her facebook page, I hope she considers my words:

Margaret, I love you, and I'm a big fan of yours. I'm also autistic, and I'm BEGGING YOU not to support Autism Speaks. They're hated and reviled in the autism community for using pity-baiting and not having any autistic representation on their board of directors or positions of power, which is radically outside of the norm of disability activism. Autism Speaks thoroughly defies the model of "Nothing about us without us."
They're also just a crappy charity. They're not recommended by the Better Business Bureau, and only 7 cents of every dollar donated to them goes to helping autistic families.
Please, if you want to support an autism related charity, consider the Autistic Self Advocacy Network, The Easter Seals, or the Autism Society of America. NOT Autism Speaks. I'm autistic, and Autism Speaks doesn't speak for me.

Here's to hoping, but I'm not that optimistic. That's my teaspoon for today. If I can get one celebrity to stop supporting the horribleness that is Autism Speaks, I'll upgrade myself from teaspoon to tablespoon for today. :-)

You just lost, and you're still an asshole

Trigger Warning for Disablist language

A common "nugget of wisdom" I'll often hear about fighting on the internet goes something like this:

"Fighting on the internet is like winning the special olympics. You may win, but you are still retarded."

I heard a recent spin on this folksy piece of bullshit from a commenter on a blog I read:

"Nobody wins when stereotypes are being thrown around but sometimes it's just fun to play games where nobody wins. It's like the Special Olympics."

I beg your pardon?

It appears the two above ideas contradict each other. One person claims that you are capable of winning, but it is rendered moot by the bad fortune of having an intellectual disability. The other claims you can't win the special olympics, period. Neither of these are true. The athletes involved in the special olympics work very hard to get where they are at, and lord knows a lazy clod like me admires their dedication. I can't even muster up the energy to change the channel on TV some days, let alone run track.

For those unfamiliar, the motto of the special olympics is: "Let me win. But if I cannot win, let me be brave in the attempt."

With that in mind, let me be brave in the attempt to explain why it's bullshit to use the special olympics as your source for comparison on anything lazy, illogical, or futile.

There's all sorts of answers I can grant that, with pages worth of research on the hard work and dedication of special olympics athletes, their coaches, and all involved. How the special olympics isn't meant to display the futility of living with a disability, but show just how fulfilling it can make life with the right resources and outlook.

But I don't have the time for that. The special olympics deserves a greater defense than what I can offer, but since I am not an athlete and have never directly participated in an event, I can't offer much in personal perspective. But as a disabled person who knows what it's like to have my disability used as a source of ridicule, I will say this:

The special olympics is an event which brings together people from many walks of life who have many experiences, but all have the common experience of being intellectually disabled folks who worked hard as all hell to get where they are. That is not reflective of a ridiculous flame war, or a goofy moment of losing logic. All these sayings reflect is that the person saying them likely doesn't have a disabled person in their lives, and likely never will have a disabled person get close enough to them in order to explain why their arrogant similes are bullshit.

Because really, who wants to waste their time with such a loser, when you can be training or working towards fulfilling a dream? A concept that is utterly alien to them, but not to special olympic athletes, that's for sure.

My first ever face-to-face run-in with a Tea Party Member

Today was the International Food Festival at my University. I volunteered at the Jewish Student Group booth in order to garner free admission and enjoy a nice view of the stage that our booth had been graciously granted. We sold challah and offered to write people's names in Hebrew for free, and I enjoyed bubble tea, hummus, baklava, and souvlaki.

While we were doing our business, a very oddly dressed man came up to our booth, and pulled out some fake money from a foreign country, asking us to identify it. The woman in the booth next to us, from Uzbekistan, was able to easily identify it, and he looked confused as to why we couldn't. "Aren't you from Uzbekistan?" he asked us. Our booths were close together, so it was a logical enough mistake. So we corrected him politely, and said we were actually the Jewish student group. "Oh." he said, and then remarked, "So you just want everybody's money then!"

The three of us at the booth were a bit shocked, but we didn't say anything. He then began to interrogate us about Montana's constitution, and asking questions to which all the answers were "Thomas Jefferson" such as "Who made the Louisiana Purchase?" He then put some fake money with Jefferson's face and Tea Party slogans printed on it, and then put a few Tea Party pamphlets on the table, covering our table. At this point, we were all very uncomfortable, but still weren't saying anything, because we didn't want him saying anything else, and hoped he would leave. Then he turned to the middle one of us, the guy writing the Hebrew for people's names, and said, "So, how come you Jews can't get along with the Palestinians? Why do you guys hate each other so much?" That's a complex question; especially because between the guy and myself, neither of us are really Zionists, in fact, he's a fluent Arabic speaker who is very close to the Arabic Professor of our school, a Palestinian man, and regularly attends meetings of groups which raise money to build playgrounds in the Palestine area. So he said, in his most firm voice, "I am a friend to Palestinians. I like them." The guy then handed us more pamphlets on the "new" constitution of Montana, which he claimed to have written himself, declaring a fair and just world for those who valued the liberty Jefferson set down.

Thankfully then, he walked off. We told the coordinators about this, and apparently he had been harassing every booth from a non-European nation. The coordinator apologized to us deeply, and we showed him the pamphlet, which had the guy's name scribbled all over it. Apparently he's a well known troublemaker at local "ethnic" based events.

So, that was my first encounter with the Tea Party face-to-face. I'm deeply unimpressed.

Note: Comments which speculate on the guy's mental health are not welcome. Neither are comments which espouse the Tea Party ideology and partake in the No True Scotsman fallacy to try and say why this guy is not representative of the Real Tea Party (TM)

-hack-hack-puke-puke-

I woke up puking this morning. I believe I might have caught a bug from a friend of mine's kid.

This isn't the first time this has happened; I've been struggling with illness this entire semester. For a while, I struggled to figure out exactly why I was getting so sick, but as of this morning, the reason dawned on me. It wasn't because I was necessarily getting exposed to more germs than before, as I initially suspected. I believe now that my immune system has been weakened due to stress.

I am willing to admit it, I've been under a lot of pressure lately. I've been trying to hold together my personal, activist, and academic life, and it's been experiencing some wild changes. Between transferring to UVic and scrambling to collect enough money to pay for all the fees involved, collecting course outlines, dealing with my girlfriend's transition, feeling overwhelmed by having to leave Missoula, and wondering about my future are all causing my health to deteriorate. It affects my ability to sleep, which interferes with my ability to fight off illness and function in school. It's not as terrible as some health problems I have faced during the last four years at UM, but it has been enough to make it difficult for me to perform my duties as a student and an activist.

Nobody who knows me can accuse me of being lazy, far from it. But sometimes my health takes a toll and I'm required to withdraw, for the sake of my body and mind, or I push myself too far and find myself.... hugging the toilet. I wish things were different, but I feel like I need to re-evaluate how much work I've been doing, and consider maybe dropping a few less-important things in my life so I don't end up collapsing.

8 years later: RIP Dad

Today marks the 8-year anniversary of the death of my father. I was 13 when it happened, and I'm still in a lot of pain and filled with a lot of anger over the circumstances surrounding his death. It's a long story, a troublesome one, but I'm here to tell it.

My father died of Hodgins Lymphoma brought on by exposure to Agent Orange Poisoning. To say that the realization that Agent Orange was behind it was one of the formative events of my life would be an understatement.

I didn't know all the politics surrounding it. I was just a teenager who wanted my dad to get better. Towards the end of his life, his health deteriorated to the point where hospitalization was necessary. Until the very end, he was a fighter, joking with the nurses, complaining about the crap hospital food, eagerly awaiting us sneaking in Wendy's for him. But it wasn't enough to fight back the reality that death was coming. He knew it, and I knew it, even though I didn't show it. He told me that I would have to take care of my mother after he was gone. He trusted me implicitly to do what was best for the family, but I was overwhelmed.

It was a dark day for us when he did die. The most vivid memory of it is walking down the hall of the hospital with my mother and my sister. We stopped in his room, and he wasn't breathing. There was a sickly yellow tint to his skin, and before it could sink in, I could hear my mother scream, "Oh my God, he's dead!"

Before I even knew what I was doing, before I even knew what I was thinking, I ran up to him and kissed him on the forehead, and just said "Goodbye. I love you."

After that, it's all kind of a blur. I spent the next few weeks alone, and to be honest, a good portion of my time was spent contemplating suicide. I even attempted, and botched, a few times. It was in a deep black spot of devastation that I did this, and I am so grateful I did not ever succeed or sustain major injury. The psychological damage, while leaving no physical scars, was even greater. I became withdrawn, unhappy, and overall, I felt like I had lost the only one I could relate to. I genuinely believe, without a shadow of doubt, that I inherited my autism from my father. He, like me, was in the habit of being boisterous, eccentric, curious, and mentally sharp, although he had difficulty expressing himself and laboured with the difficulties of undiagnosed dyslexia.

It's been 8 years since all that. I was told the pain would get less and less. But truthfully, it hasn't. I still unjustly lost my father, and the searing sadness was replaced by a more dull ache, which is strong particularly on days like this.

I wish I could say something more eloquent, or talk about being sprung forth into action to make sure an incident like Agent Orange never happens again in history. There are some elements to that in my personal narrative about my father's death, little seeds planted in adult me now that I have the strength and resolve I was lacking when I was 13. But above all else, I still remain a grieving daughter, and I believe I always will be. There's no shame in that, I think. It's a part of me that doesn't vanish as I age, it merely evolves and undergoes some changes.

I don't believe in saying goodbye to my dad in this post. I had my goodbyes. But I would like to say thank you to him, if he could hear me. I'm proud of the person I turned out to be, and he helped create that. He wasn't a perfect man, but the deep love I feel for him negates any flaws which plagued his personality, later in life, owing to the struggles of dying before his time and post-traumatic stress disorder. I just hope he would love me now as much as he loved 13 year old me, even though I have changed so much.