Thursday, April 6, 2017

Interview with Sam Perry- Autism Acceptance Day 2017

Sam Perry, 21, is an autistic woman living and working in the Orlando theme park industry. She lives independently with her partner, two cats, and three guinea pigs.

What is your life like as an Autistic person?

    For me, ‘adult life’ is like trying to muddle through the day-to-day in a different culture that I wasn’t exposed to as a child. I didn’t know exactly why I was different until early high school and I wasn’t diagnosed professionally until age 19, after two years in college. Being autistic and being aware of it now means I adjust to the neurotypical norm when I have to and I have to take care not to exhaust myself while doing it. In college it was easy. I memorize rapidly and forget all of it as soon as I’m not repeating that knowledge daily. So I breezed through college in three years with a Magna cum laude GPA. Transitioning into truly independent living and working was difficult. I was homeless for a month and a half after graduation because nobody walked me through how to find a good place to live. Being in Florida, I fell for a cheap apartment and woke up on the first night surrounded by police sirens and cockroaches! So I lived on a friend’s couch for a while, and then I found a decent place that I lived in for two months. But the roommate who was taking care of everything was manipulative, verbally abusive, and nearly got us evicted. I’ve stumbled along like that all through life. I was in an abusive relationship as a teen, too. Not many people realise how easy it is for autistics, especially autistic women, to be manipulated. Luckily, I now live with my long-term partner who is also neurodivergent and it is a 100% safe and stable situation. We both have careers and we pay the bills. So I’m very privileged despite all of the messes I’ve been in.
Often, I go to work and do nothing else. Once I’m home there’s just no energy left. Some people might say ‘oh, me too!’ without understanding that no, I’m not talking about sitting on my couch because I’m tired but still being able to cook dinner and do housework. I’m talking about sleeping 10-12 hours a day and still having limited energy, having to hyperfocus on housework when I have days off. I eat a terrible diet because I can’t handle a lot of foods and I don’t have the time, money or energy to cook decent meals--it’s a tasty diet, but I’m obese! My home is cluttered and full of stuffed animals. You’d come into my apartment and think we had kids. (We don’t, and we don’t want any!). But above all it’s good. It’s normal. You might read these paragraphs and think ‘god, I don’t want anyone to live like that’. Yet for us, it’s really okay. The good mostly outweighs the bad.

What is the most joyful, fun, exciting thing about being Autistic?

For me, I was privileged enough financially to move here so that I could pretty much live and breathe my special interests. I work in the ‘backstage’ offices of a major theme park, and it’s great, but I also spend as much of my free time out in the parks as I can. I share this joy with my partner and the circle of friends we’ve made together who are theme park locals. That freedom to really do what I like to do, as much as I’m able to within the constraints of a 9-to-5 job, is how I keep healthy. I have a therapist and I take medications but that freedom is my life force, really.

What is the most difficult about being Autistic for you?

    Being in the body that I am, the position that I am, having the brain that I’s essentially a daily struggle to be taken seriously. Among the people I work with it’s awkward because there’s this feeling of infantilization, always. I’m only 21 but I feel like I’m treated like a kid because I’m enthusiastic about where we work and an interest like mine can be seen as ‘childish’. Recently I was invited to a department awards ceremony. I got an award for using an internal ‘suggestion box’ to give my thoughts to a different department about something in the park that could be improved. My boss spoke about how I knew everything about the parks and that if anyone needed a VIP tour to give me a call...I couldn’t help but feel embarrassed. I work my butt off doing a specific administrative job that doesn’t have much to do with my personal interest in the parks, and all anyone could talk about was how I could rattle off the opening dates of half our rides. It’s being reduced to a parlor trick, a conversation piece. That part honestly sucks.
Worse than that is when people in ‘autism community’ spaces, online, in person, anywhere, refuse to consider your words. It’s parents and educators and ‘experts’ that think they know better than living, breathing autistic people. People who obsess over the causes of autism without considering that their child or client needs to learn how to self-advocate or else they’ll grow up truly ‘voiceless’ against abuse. There’s a lot of division and fighting between actually autistic people and those who think they know what’s best for them. Those battles leave me exhausted and heartbroken.

How has the Autism Acceptance Day/Month effort over the past seven years affected you personally? If you were not aware of it until recently, what meaning does Autism Acceptance Day/Month have to you now?

    It makes me happy that we have an outlet. Two years ago I wore all red to my college classes. Red lipstick, red face paint, red nail polish, red clothing...and there was real, legitimate dialogue that was sparked by it. Sometimes I feel ridiculous going out like that, but the response is usually pretty positive from those who aren’t directly involved in the ‘awareness’ camp. It’s really funny how those folks love to go around telling everyone how ‘voiceless’ we are and then figuratively slap their hands over our mouths when we try to talk about our experiences. I think having this Acceptance Month allows us to take back what’s rightfully ours.

What does “moving beyond awareness” mean to you?

    Something akin to what we have with ‘accessibility’ in everyday life. I know the world and society are not perfect for ANYONE that is disabled, but when most people see that little blue and white wheelchair sign, they think of the accommodations that are in place. Bathrooms. Ramps. Low-height counters. Obviously the accommodations we autistic people need aren’t physical, but they are pretty straightforward. If someone hears the word ‘autistic’ their first thoughts should NOT be the stereotypical images forced upon us by that ‘awareness’ movement. I’m talking not forcing eye contact instead of wearing puzzle pieces. Knowing what stim toys and sensory-friendliness are instead of remembering a filmed meltdown some ‘autism mom’ posted.

This movement must go beyond the neurotypical and allistic perspective to be placed back into the hands of those who actually will benefit. Can you imagine a world where the women’s rights movement was comprised of 100% men, talking about their family’s ‘struggles’ while carting their silent wives and daughters around as pity trophies?

What is one thing about acceptance that would make a difference in the world?

    God, you know, the first thing that comes to mind is that universal accommodation could be standard. What if all spaces were sensory-friendly? What if all people could choose to pursue a career path that not only aligned with their interests but was healthy for them based on their needs (such as working from home or on a flex schedule), without having to worry about the financial repercussions? I think acceptance is the first step to ending the ‘othering’ of the disability community. Yes, we are different--our culture and spaces are vastly different!--but our treatment in society should not be.

1 comment:

  1. This makes me wonder, how many of us who have food tolerance issues also have weight problems? Most of the people I know who've commented on their foot tolerance issues have ended up only able to tolerate very starchy or sweet foods, and since high carbohydrate foods tend to be the most likely to cause weight gain, it makes me wonder if food tolerance issues and weight gain might be related.


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