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.

Please, Don't Pray For Me When I'm Gone

Today, I was reading a very tragic story about a young woman who lost her life before her time. For once, the entire comments section was respectful, offering their condolences to the family. But I was disturbed by the walloping amounts of God-centric language, such as promising that the girl was now in heaven, that God would protect her, that God would protect the family.

If that had been a funeral where everyone was 100% sure what the girl (and her family's) religious affiliations were, that would be fine, no problem. But I started thinking about how, assuming I had a ghost or had some way of knowing what people were saying about me after I died, I'd be peeved if a whole bunch of people, whether family or strangers, started saying that I was in Heaven now, and that God would protect me, or my family.

It is disrespectful to presume that I would have a religion where some sort of Heaven was included in the afterlife package. It's disrespectful to even presume I have a religion, period. It would be a bitter pill for me if the exact same people who, during my lifetime, are telling me I'm going to Hell, decided to have a heel-face turn if I had an unexpected death, and honey up with the "In God's hands" and "Heaven" language.

So, let this be my public statement on this issue right now, while I am breathing and of sound mind (whatever that means) Here we go:

After I die, I don't want a single person promising to pray for me, or for my family. I don't want anyone saying that I'm with God now, or going to Heaven. By the accounts of most religions which have a Heaven and Hell, I am going to Hell for being who I am and believing what I do. Regardless of what your beliefs on the subject are, I don't care for you acting like I would have wanted what you want out of death.I'm the one who is dead, and I don't want you pushing your ideas of the afterlife on my soul. When I die, express condolences to my family and loved ones, and if I happen to live to a good age, be happy I led a rich, full life. If not, then hope that you and my loved ones can continue doing what I am passionate about now that I can't take it on myself. If I die of a tragic illness or a tragic event, donate money to a cause looking for a way to help survivors.

But above all else, no prayers please. It would be insulting to my memory to do so.

The Flowers That Bloom in the Spring, Tra-Lah!

Well, Jarrah at Gender Focus today directed me to this particular gem of bigotry: A florist in New Brunswick who refused to sell flowers to a wedding planner after she learned that the flowers would be used in a same sex wedding.

Thankfully, as Jarrah put it:

The thing is, while Canadians have a right to hold their own religious beliefs, the right doesn’t extend to allow people to use their religion to discriminate against others when operating a business or providing a public service. Saying your florist won’t provide flowers for gay weddings is the same as saying your coffee shop or restaurant or funeral home or bed and breakfast won’t serve members of a certain minority group.

There we go. Bless my new home and not-so native land.

But it got me thinking, as a new Canadian and a newly out queer woman dating another queer woman, about my future wedding. Just ask my girlfriend, she will tell you, in spite of myself, that I'm a wedding junkie. I eat up wedding information for brunch. I have an entire folder devoted to wedding ideas on my computer, neatly divided between cake ideas, dresses for myself, dresses for my girlfriend, dresses for our bridesmaids, you get the idea. I can't help myself. It comes from partial extravagance in my bloodstream, partially because it's an extension for my love of making things and crafts, and partially due to my deep-seated love of theatrics.

My girlfriend and I are lucky enough to both be Canadians, so we have been given our legal right to marry when we feel ready. One of the reasons I am leaving America is because I was very aware of the dangers living here together would pose, and because I am hyper aware of our status as second class citizens. I didn't want to spend the rest of my Aprils looking to tick a box labelled "Married in Massachusetts but doesn't have marriage recognized at the federal level." But as the article above demonstrated, Canada is not free from bigotry and attitudes which make life for gay couples difficult. We will still have to contend with asshole attitudes, even within the beautifully gay friendly city of Victoria. Whenever I do my random customary "wedding hunts" for items of interest from Victoria, I keep my eyes peeled for signs of trouble, or, on a positive note, a little rainbow somewhere symbolizing a commitment to welcoming all couples.

But alas, I'm afraid that the biggest opposition of all to my wedding isn't going to come from the baker of our wedding cake, or our florist, or the dressmaker. The greatest obstacle I face in having my dream wedding to my girlfriend is my family. This was the most difficult part of coming to terms with my own queerness and my girlfriend's new identity: I realized right away that my mother, who threatened to not have a relationship with me if I dated women when I told her I was bisexual, would never accept us, or give us her blessing. I am waiting until I am 100% financially independent and have all of my belongings with me in Victoria before I choose to tell her the truth. For now, she still thinks I'm dating a man, and is eagerly discussing a possible future wedding with me when I call her. All that excitement will be blasted away by the news that there will be two brides. So deep is her intolerance, I considered having a fake heterosexual wedding between myself and my girlfriend, before hormones and surgery come into the picture, just to fool her.

But I can't bring myself to do this. It's a dishonesty to myself, to my girlfriend, and all queer couples looking to get hitched. I am learning to accept that my mother will not accept me. She and I have always had a strained relationship after my dad's death, but this will probably break it. In the end though, I'm hoping she at least doesn't hang up when I call her on her birthday.

I guess what I am trying to say with this whole mess of a post is this: Being queer means getting over the bullshit and demands of other people in order to fulfil your dreams. Don't let anyone, a florist or your parents, stop you from having those wishes come true.

From Garden City USA to Garden City Canada

Trigger warning for disablist language

Throughout my childhood, I never once moved. Every summer, my family would take a vacation to either Montana or Canada, but apart from that, I pretty much stayed with the same group of people from preschool to high school. That's partially what motivated me to go to Montana: To get as far, far away from my classmates as possible. I wanted a clean slate from being the "freak" and the "retard", and get a chance to make friends with people who wouldn't base judgements based on my childhood stint in special needs classes, the way kids in Hawaii tended to.

I got a fresh start in Montana, but I had to cope with a fresh wave of problems. I had to repeatedly come out of the closet as disabled, and not many were willing to accept someone who had a multitude of cognitive disabilities in their midsts. I had to contend with my evolving realization of my queerness, my budding progressivism, and realizations that, even though most of the people in school were a wedge or more smarter than my high school peers, many of them were heartless, inconsiderate, and wilfully ignorant of ways of thinking outside of their own neurotype, race, religion, and upbringing. They presumed all shared their experience, and grew angry when I differed because of my autism, my Jewishness, or the fact that I was raised in Hawaii.

I also came to realize how suffocating it was for me to be in a predominantly white environment. Even though my skin is light and I have green/grey eyes, I grew up accustomed to Hawaii's diversity, not only in terms of race and ethnic background, but in terms of religion and country of origin. In Montana, my school is, as one professor put it once, "positively mayonnaise". It was an uncomfortable experience for me, because like I said before, the white students assumed that my whiteness implied a shared experience with them, and that I would join in when they started bashing affirmative action, or complaining about the presence of nonwhite students in the classroom. I also had the unpleasant experience of having people stare at my mom, a Montana Native (in more than one sense of the word) when she came to visit me, and pester me about why she was so brown.

It got better these last few years, because I found out that I didn't have to limit myself by interacting with other students. I found friends in people who worked at the University or the Rural Institute, and discovered that I share a lot more in common with disability advocates old enough to be my mother or grandmother, than I do with college students in my own age group. I also discovered that grad students offered me a fun and enlightening friendship, and there were a few wonderful friends my age who stuck by me. I will miss them all when I leave Montana.

But now that brings me to my new fresh beginning: Victoria. It awaits me in May, tomorrow I find out whether or not I will have a place to live for the summer. Victoria will be an easier adjustment than Montana for me. I'm older now, and more comfortable with my queerness, my disabilities, my beliefs, my Jewish identity, and with myself overall. I no longer take shit off anyone, and I'm a lot more certain about what I want to do with my life and how I want to reach there. But like any autistic, I have a niggling fear about not fitting in, and not finding friends.

Change can be difficult for an aspie. But it's an ever-present force in the universe, and I am not yet capable of escaping this Samsara. My only hope is that, within Victoria, I will find myself either feeling something I've never felt all-encompassing in my home, absolute acceptance, or that I will be able to tend to my own little corner with my own closely cultivated friends to give me solace.

Who knows?

Gah! April Articles Leave Autistic Bloggers Crumbling to Particles

I just looked at my calendar, readers, and I realized something: Apart from the wonderful revelation that Spring Break is two weeks away, that is. April is coming up, and April is Autism Awareness Month! Let the groaning begin!

Let's just get one thing clear: I hate Autism Awareness Month. I hate it I hate it I hate it. I hate all the shitty articles with a mouthpiece from Autism Speaks usually providing the information and insulting comparisons to AIDS, cancer, and diabetes. I hate the gaudy, ugly puzzle ribbon and puzzle motif that graces every piece related to autism. I hate those damn chocolate bunnies with the gold foil and red ribbon which gives a sliver of the proceeds to Autism Speaks.

But most of all, I hate how throughout the entire world of mainstream media on autism, they almost never once bother to even obtain the opinion of a single autistic person. Sometimes, an arbitrary mention of Temple Grandin is thrown in. Or there will be a special puff piece on how some autistics -gasp- manage to find employment and lead productive lives, and treating it like a special little miracle. I'll give them that, it is pretty much a miracle for it to happen when everyone goes out of the way to make you feel like a worthless outcast and doesn't bother to accommodate you on the workplace. But I digress.

April is on its way. There's no avoiding that. As much as I would like to take the month off from blogging, unplug my computer, and hide myself in a luxury cabin by a hot spring upon an isolated mountain with nothing but a bottle of sake, some LUSH products, a good book selection, and a supply of my favourite nibbles, I have work to do.

My mission this April: I'm not simultaneously blog and not blog about autism. I'm just going to transform this little space into a happy-fun-time about my life for the month of April. I'll take pictures, enjoy my last few weeks in Missoula, show off photos of my cooking, whatever. What's that got to do with autism, you ask? I'm autistic. Therefore, every action I take is related to autism somehow. It affects my entire being. And you bet that I am going to spend the month demystifying autism, transforming it from a peril felt by unlucky families who feel their lives slipping away, and I'm going to make it as normal and fun as possible.

April, Autism Awareness Month: Bring it on!

Mistaken for Deaf

Many, many times in my life, I have been mistaken for a deaf woman. I am not deaf, I have unusually sensitive hearing, which makes certain environments with repetitive, high-pitched sounds a nightmare. I would think that me wincing and tapping my ears with my palms would be a clue that I'm not deaf, but oh well.

The most recent occurrence of this was in the University Center two days ago, when I was grabbing a deliciously unhealthy egg and cheese based breakfast. A woman approached me, and, assuming she was talking to someone else, I didn't pay much attention to what she was saying, and continued in my business. I then heard her say "Oh, I'm sorry!" in a rather loud voice. That caught my attention. I turned around, and said "Sorry for what?"

Woman looked like she had seen a ghost or something, and said, "Wait, aren't you deaf?"

"Uh... No I'm not." was my reply. "Wait, I thought you were!" At that point, I just shook my head and made a beeline for the cash register. If I weren't so used to it at this point, I would have been weirded out.

I've asked around if there is a way I act or move or speak which is distinctly different from the mannerisms of hearing people. I've been told that I speak louder than average, that I don't enunciate very well in particular situations, and that my infliction is different from that of the average person.

Well yes. Somewhat stilted speech, louder than average, those are typical of some people with autism. But I also react to noises outside of my visual range, and don't use ASL or wear a hearing aid. It still strikes me as curious that I am presumed to be deaf first rather than autistic.

But then I realized something: Deaf people aren't exactly given a strong presence in mass media, but the signs of deafness in adults are generally known to the general public. These signs overlap in autistic adults, but are rarely given time as signs of autism in TV portrayals of it, with the exception of Temple Grandin, the movie, where Temple spoke with a loud voice with very little lilt, and didn't convey much subtle nuance or emotion with her voice. Apart from that though, it's very rare to see a portrayal of an autistic adult with mannerisms like mine. No wonder deafness is the first thing that comes to people's mind!

And for those of you, like dear Elesia over at Aspietude!, who are deaf and autistic: Does someone assume you possess another disability entirely? :-P

Goodbye to America

Well, now it is official: In two months time, I will be leaving the United States to go to school and live in Canada. I will be a student in the Asian & Pacific Studies program at the University of Victoria. I don't intend on ever returning to America, except to work for a year or more to work within the confines of the Student Loan Forgiveness Program.

I didn't anticipate that this would be happening so soon. I had originally planned to stay here until spring of 2012. But the political and financial circumstances here have forced me out of my country, essentially.

But I am glad. In the immortal words of Leonard Cohen, "I love the country, but I can't stand the scene." I have lived here all of my life, 21 years, a meagre amount in the grand scheme of things, but a lot has happened during that time. I feel that things have become truly unstable here for me in America, as a disabled person, as a woman, as a non-Christian, and as a queer person of Jewish ancestry.

I never before would have advocated flying away with my tail between my legs. I am by nature a fighter, and I would, if I could, be willing to buckle down and show the world that I still believe in fighting for what's right in my home country. But I also have to think about my own education and my own safety. I also have to consider in the long run how much good I can do in the world. I feel that I will have the greater power to fulfil my dreams and aspirations in Canada. I will have a social safety net to depend on, a culture which is not rapidly flushing in a downward spiral of willful ignorance and cruel disregard for the vulnerable, and my beautiful girlfriend to aid me all the while. It is in this environment that I can flourish and engage in my academic future and legal future.

My talents and ambitions were not considered worth funding in America. Montanan students were collectively thrown under the bus with the slashing to upper education funding. We were considered a liability by the Montana legislature, because we were educated, passionate, and willing to challenge the dominant paradigm. So, they can pat themselves on the back for forcing me to leave, but the joke is on them. My exile will strengthen my resolve to make this world a better place for all people. From Canada, I will become unstoppable in my resolve to bring about justice, freedom, equality, and safety for all, and these lessons won't stop at the border.

I believe in Canada. It's not a perfect country either, far from it. But I know it will give me a chance to find my way as an advocate of all I believe in, as a student, and as an aspiring lawyer.

Goodbye, America.

The difference between Autism Awareness and Autism Acceptance

If you're actively involved in autistic self advocacy, are autistic yourself, have an autistic sibling, an autistic friend, an autistic partner/spouse, an autistic child, or an autistic friend, you have no doubt run into an "Autism Awareness" event, either advertised on the internet, or gone to one in your community. They're usually marked by an emphasis on children with autism, a plethora of puzzle ribbons, and a decided feeling that it is not for autistic people at all, but rather, designed for relatives (read: Parents and guardians) of people with autism. These events usually don't take place in autistic-friendly environments, have loud noise, large crowds, and sickeningly bright and flashy décor as part of the package. Usually the speakers will be doctors, parents, representatives from charities, but rarely autistic people themselves. The focus of these lectures will typically be how to curb or mask autistic behavioural traits like stimming, the latest in ABA techniques, or sales representatives for chelating agents and alternative medicine.

Sometimes this isn't the case, but let's face it: Autism Awareness is so 20 years ago.

Back when autism was a relatively unknown thing, occurring in a scattering of families who didn't particularly talk about it publicly or bring their children out to play with others or integrate them into regular schools, an Autism Awareness event made more sense.

Nowadays though, with 1 in 100 of us having some form of autism, the spectrum being recognized as varying from nonverbal to chatterbox, and every teacher, caretaker, doctor, therapist, and babysitter knowing about autism, Autism Awareness doesn't make sense, either as a phrase, or as a marker for an event about autism. The misconceptions are still rapid and widespread, but Autism Awareness doesn't seem to be working towards rectifying the stereotypes. Since the events are typically put on by non autistics for non autistics, they do little to reach out to autistic adults who may be starved for the chance to enrich their lives with knowledge of their disability and resources, or even get a diagnosis.

But an event geared towards Autism Acceptance can make a fundamental paradigm shift in public events geared towards autism a reality. Autism Acceptance forces people to re-examine their prejudices, find out what it means to be autistic from an autistic person, and takes the focus off of curing and more on improving the quality of life of autistic people who need help now in building and maintaining productive, meaningful lives.

So, next time you see one of these events, I dare you to ask the coordinators, either in an email or in person, what they hope to accomplish with their event, and challenge them to rethink doing an Autism Awareness event, and gear it towards Autism Acceptance. Tell them what a difference it could make to reach out to autistic adults in their community by asking them to be involved with their project. Ask them to book an autistic speaker. Ask about putting it in a sensory-friendly environment or making a sensory friendly environment so autistic people won't be alienated from attending.

Or better yet: Put on your own. Start small and work your way up. You never know what will come of it.

Diagnonsense?

Within seconds of NPR posting a request on their facebook page for parents with a child with ADHD to talk to them about whether they've cut artificial food dyes out of the child's diet, it was swarming with people complaining about how ADHD was overdiagnosed, or how children just needed to go vegan, get off their meds, or try homeopathy. But the most overwhelming sentiment was the first one, many showed a great exasperation at NPR putting together this story, as it would only fuel the myth that ADHD is real.

A few minutes later, I see an Adbusters article being posted which says the same thing about overdiagnosis and Big Pharma (TM), only this time the disability being pulled apart for self-righteous neurotypicals to proclaim was all a myth started to get kids on expensive drugs was Manic-Depressive Disorder, sometimes known as Bipolar Disorder.

One time long ago, I was excitedly telling someone about a local film festival showing a film about an autistic photographer, and was treated to a 10 minute lecture about how there was nothing wrong with me, and my diagnosis was irrelevant because the doctor who diagnosed me wasn't a Psychoanalyst, and how it was all a ploy to get me onto drugs.

These three separate occasions, dealing with three different sources on three different disabilities have one thing uniting them: They are stories of unprofessional neurotypicals feeling that they alone understand that we disabled folk are all just faking it or being stupidly duped by a drug company, and that if we just realized we were normal, our lives would go on as happily as the average neurotypical's.

The invisibility of ADHD, autism, and Bipolar disorder means that it's frequently assumed on the part of those without disabilities that the disabled person is faking it, or perfectly fine, or just needs the right neurotypical type of thinking about life or kickstart (Usually in the form of "Swift kick in the pants" or "Good spanking" or "Wake up and smell the coffee"....) and the disability will no longer be an issue, and meds will no longer be necessary.

Ha, ha, very funny, everyone. I suppose my friends with physical disabilities don't need their canes, their vents, their wheelchairs, their walkers, their power wheelchairs, their white canes, their scooters, or elevators? It's all a big trick by Big Pharma. Embrace freedom! Live naturally!

I digress. My point is, for some people with mental and cognitive and intellectual disabilities, the medications are just as important to us as assistive equipment is to physically disabled individuals. Just because it's a chemical doesn't mean it's a bad thing. You claim that you just want us to live "naturally". Well, medicine helps us live natural lives, in control of our emotions and physical reactions, without being worried about sensory overload, mood swings, or other delightful things which plague someone who is undiagnosed, misdiagnosed, or unable to obtain their medicine. How much more natural is it for me to spend my days doing what I love, going to school, enjoying myself, and working a steady job? None of that would be possible for people with certain disabilities without their medication.

There's nothing quite as disablist as thinking you know what's better for us than our doctors and we ourselves do. Leave us and our disabilities out of your debates on the evils of the pharmaceutical industry.

All these foreign treasures and pleasures

The other day on Alas, A Blog, I learned that only three percent (3%) of the books published in the United States are translated from other languages.
This surprised and saddened me, and I did a quick scan of my backpack and my memory to see what I was reading at the moment that was a translation, and what foreign-language to English books had proved popular in the last few months on NPR and literary-oriented blogs I keep up with.
From my backpack, there's a translation of the Bhagavad Gita (Original language: Sanskrit) An omnibus of the plays of Ivan Turgenev (Original language: Russian) and three books, namely, Bosnian Chronicles, The Vizier's Elephant, and The Bridge on the Drina, by Ivo Andric (Original language: Serbo-Croat) as well as two books written in English, one of which, The Ladies of Grace Adieu, sometimes employs anachronistic English, ranging from a Jane Austen styled "shew" instead of "show", to full on vernacular dialects of British English long forgotten or evolved.
From various book blogs and NPR, I've accumulated quite the heavy load of books translated from English. A series on Scandinavian literature that isn't crime or mystery-heavy as the Millennium Trilogy led me to We, The Drowned (Original language: Danish) Popular Music from Vittula (Original language: Swedish) and Quicksand (Original language: Danish) Reading a blog by a Hispanic Studies academic kindled my interest in Fuenteovejuna (Original language: Spanish) and of course, everyone in the literary world is abuzz waiting for the English translation of Haruki Murakami's newest novel (Original language: Japanese)
And yet this constitutes, apparently, very little of what gets published in America. I shudder to think about what the statistics are regarding English translation literature that is widely read in America. Though if you have a stat of it, please share.
I have a decided advantage over many people in the United States when it comes to reading books that come from non-English speaking places: My background in International studies and Asian studies means that I'm more comfortable navigating unfamiliar cultural norms and styles than others may be, and have to rely less on footnotes and special annotations to explain a particular action, phrase, or allusion. This speeds up the reading process for me, and when I do have to stop to look up something or clarify a particular unfamiliar moment, I'm not thrown off from the reading experience.
Several other advantages I have which probably contributes to me reading more translated literature than average is my bilingualism (I am also slowly hoping to obtain fluency in Russian, French, and Swedish) which, believe it or not, contributes more, not less, to me reading translated works. Sure, I love reading poems in the original Japanese. But I also love comparing translations and seeing which ones come out on top. It also allows me to be more discerning about which translations I pick for people who don't speak Japanese, and can usually recommend one based not only on quality, but on their personal preferences. It also helps that I have many friends from different countries who are eager to share the best of their country's literary output with me. That is how I picked up Zorba the Greek and The Last Temptation of Christ (Original language: Greek) and as well as those Andric books listed above.

All of this aside though, I have something to tell those who don't typically read translated literature: You're missing out, and you don't have to start big.

It's been proven with the marketing of the Millennium Trilogy that it's not impossible to make a book set in a foreign land translated into English desirable and hotly read in America. You don't have to start out big though. If you've never really paid attention to foreign literature, start with something fun and accessible in a genre you like. If you have children, read "The Little Prince" and "Momotaro Peach Boy" to them. If you're nervous about the cultural differences, start off with an author like Salman Rushdie or Kazuo Ishiguro, who write in English but have a different cultural perspective to offer. Work your way up to works in a genre you love, such as crime thrillers (I know, I'll stop now!) or romance, or adventure. Try out a memoir.

Either way, there's little that can be done by a single reader to change the trend of 3%. But there's a lot that can be done to enrich you personally by defying this trend and showing that you, a reader, take an interest in books translated into English.