The Best, Most Perfect Metaphor Ever In The History of Ever (or at least in the admittedly short history of this blog)

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. 

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9 thoughts on “The Best, Most Perfect Metaphor Ever In The History of Ever (or at least in the admittedly short history of this blog)

  1. Pingback: This one works for me… | Autism Support in Early Intervention

  2. I loved this post. I’m autistic and have designed and direct a program which teaches independent living/vocational skills to young neurodiverse adults. I am gas-lighted daily by my organization, providers and other NT individuals who work in this field. I’m working to create a ND safe space, hire ND staff, and encourage ND leadership, all of which matters zero to most of the NTs I work and interact with. It does however matter to us, Thank you for writing this; you’ve made me feel a little less alone this morning. Brent

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  3. Best.Metaphor.EVER!!! love it! thank you so much for posting this. I’m sharing this not only to encourage my ND friends and family but because every NT person with half a brain for interpretation needs to read this and understand what its really like dealing with such wide spread ignorance. because thats the real epidemic- apathy and ignorance. NOT autism. my best wishes to you while you attend your program. i hope that its gets better for you and that you can continue to be strong and bring about a change in the mindsets of your class and these “experts”

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  4. I can sympathize with you.
    I took a course about children with disabilities in college; I grew up with disabilities and thought the class could give me different perspectives and help me learn about other disabilities. The instructor often asked for the perspective of the parents who had children with disabilities (the same 3 women), but never asked for mine, some one who grew up with physical limitations and striggers wit learninh. If I offered input she seemed to ignore it, quickly went to one of her favorites.
    The only time she acknowledged that I had something interesting to say was in a note on the corner of a paper I wrote; the topic was “how can you relate to the main character?” But nothing changed in the classroom. I left her course with the knowledge I learned, and went on my way.
    Hopefully things turn out different in your case and you can change their minds; show them your knowledge is as, maybe more, valid because of your first hand experience.

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  5. I enjoy metaphors, and I agree that this is a great one! I have had similar experiences because I am autistic, and I work with children with special needs, including autistic children. But if I mention to any co-workers or parents that I am autistic, they look at me like I am crazy, and even try to argue with me. “I don’t think you really are. You don’t seem autistic.” (Because, of course, having known me for several weeks, they now know all about me and how my mind works and what I am like at home and in every other situation outside of work, right?) People will also say things about people with autism in general, such as. “You know they have know empathy,” or “It is because they don’t have imaginations.” And I’m like, “Um, hello? RIght here? Not only do I know I have empathy and an imagination, but I know MANY autistic adults and children who do also.” But no, that cannot be possible, because I have a job and I can talk and therefore I am not REALLY autistic.

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