So it’s like this.
You’re Hawaiian, but you’ve lived in Vermont for twenty years. It was an involuntary move, but you’ve gotten used to Vermont and the cold winter and you can generally deal. You’ve learned the culture, the roads, how to deal with the snow, how to dress in layers. You can appreciate the foliage and the maple syrup.
And then one day you’re taking a class and the professor is talking about Hawaii, and you’re all excited, because hey! You’re Hawaiian! It never occurs to you that you might not be considered the foremost expert on Hawaii, because, well, it’s your identity, it’s your community, it is where you were born and raised.
And the professor says, “I hear that is your experience of Hawaii, but do you have any peer-reviewed studies to back it up?”
And a classmate says, “I have been seriously injured by Hawaii. It’s a horrible place.”
And another person says, “You’re not really from Hawaii, though, are you? You’re from O’ahu. I have this kid from Kaho’olahe, and you are nothing like them.”
So then you get defensive. You try to explain that the person was injured by a volcano, and that volcanoes, while they happen on Hawai’i, are not the principal characteristic of it. You say that all Hawaiians are your brothers and sisters, and please don’t denigrate or say how horrible it is, because all Hawaiians are my family and all the islands are my home. And your experience living on one island may not be the exact same experience as someone else’s on another island, but overall, Hawaiians have a heck of a lot more in common than they do with Vermonters.
And then somebody brings up the word epidemic, and you leave the room, before you start to cry.
I have started a new program, centered on disability issues. It is for a limited time each week for a year, and I am compensated, which is awesome. I like my advisors and I’m beyond excited about the projects, but I do not think that it fully sunk in that I would be the only person with an actual developmental disability in the room (there are about a dozen people in the program) until, well, until I was. I found myself getting very militant-disability-rights, getting snarky, getting defensive, because talking about autism means talking about me and oh my gosh was it ever awkward. We heard a lecture by a developmental pediatrician, and it pained me that he was acknowledged as the expert on autism, and not me, me who is actually autistic. Some of my classmates have autistic family members, and they said some really hurtful things which made my soul and my heart ache.
I had a rather horrible first day, although it didn’t strike me as horrible until I was at home, ensconced in my safe haven, later on. It was so much more difficult than I ever expected it to be – not the work, not the academics, but the attitudes of the people around me. I trust my advisor when ze says that all of these people have people’s best interests at heart, but even though I said ‘I’m autistic, *not* a person with autism’, I could tell that many of them thought I was nothing like the people that they knew at all.
I’m going back, because I am no coward when it comes to hard work and I truly believe that this program could change my life. I’m going back, because I need to learn more in order to do more in this world. I’m going back, because I believe that my perspective could be a vital addition to people’s experiences with autism. I’m going back, but I wish that there was a way to harden my heart and shield it against people who think that Hawaii is all volcanoes and autism is all violence.
People can forget that Hawaii is part of the United States, sometimes. They can forget how Hawaiians can look and act just like any other American. I feel it is my calling to educate people about the Hawaii, about the autism, that I know, from the inside out. Though it might be hard to get through this Vermont winter, I have done it before and I will do it again. I will keep going back, because nothing will stop me from advocating for the people I consider mine.
For the record – I’ve never been to Hawaii, and I had to look up the names of the actual islands. I’m also not from Vermont. But I have decided that it is the Most Perfect Metaphor Ever and I just love it. For clarification: in this essay, Hawaii is representing autism, and Vermont is representing the neuro-typical world. And no, I don’t think that autism and Hawaii are that alike not just because many people think Hawaii is paradise and autism is no paradise but because one is a geographical place and the other is a neurological condition. But I still like it, and I hope that you do too.