Thursday, April 24, 2014

Autism Acceptance Month 2014: Jason Ross

This month we're asking our autistic community members What Do You Want? What Do You Need? We're featuring their answers all April long, right here. Today we're having a conversation with Jason Ross, a self-advocate who thrives on empowering others. Please read, listen, and share.

What are some things you like people to know about you?

I run Self-Advocacy/Empowerment meetings part-time, helping many people who are autistic, have developmental disabilities, ID, or mental health issues. These people who are residents and day habilitation consumers in New York City feel that they have a voice and the same real choices that everyone else has. I create presentations every week, and curriculum that I try to get everyone to follow to help create a sense of worthiness for everyone. Empowering others really empowers not only them, but myself as well. I also run the Adaptations Facebook page for the JCC in Manhattan part-time.

Every year on Autistic Pride Day, June 18th, I run my Autistic Artistic Carnival on www.drivemomcrazy.com.  I can't wait to see what this year's 5th Annual Carnival will show to society. I create my own art and write stories too! I admire my dog, Skyler the Maltese dog who is fearless in nature. I have many struggles as an Autistic person.

What are some things that make you happy? Why?

I really feel happy when I have helped people along the way on my path of helping myself. I also work to try to change society's perception of the disability community, because it makes me feel I am making a difference, though, I get frustrated when I can't really help others right away.  I just keep on moving forward to help people and do the things that I love to do!

I also feel happy when I organize my life, and can feel satisfied by deep pressure on my body when I need it.

What are some things you avoid whenever possible? Why?

I avoid crowds as much as I can, and loud noises, like sirens, firecrackers, popping balloons, and lighting that hurts my eyes. I have multi-sensory issues that affect my every day living and it makes me feel upset when people insist I have to do certain things when my sensory issues become bothered. I also do not like soft touch and avoid this as much as possible. However, I have had to compromise for society because many people have insisted I need to be around certain things. So, I cover my ears, but probably will need to invest in excess noise canceling headphones soon. I also do not like confrontations, but realize sometimes it's necessary to allow others to know what you are saying in a gentle, non-assuming way that others will understand.

What features does your ideal living space have, and why?

My ideal living space is living in an area where I can drive my car to get to where I can go, but have easy access to using a train to get to the urban areas when necessary. I prefer living in the country rather than the city, but the meaningful work I do is in the city. I would love to live in a space where I can organize myself easily, and post on a bulletin board on my wall reminders for what I need to do each day. I need many different types of support in my living space. I would love to one day own a house in the Negev Desert in Israel because of the quiet, serene, simple, natural beauty of the desert. For now, I am living at home with my parents which is ideal enough until it's time for me to move on.

What are your favorite books, movies, and/or TV shows?

My favorite TV show is Ghost Whisperer (on NetFlix) and many people say I should get into Game of Thrones since it's right up my alley, and I love looking up on the internet about The Walking Dead series. I've only seen season one. I have been leaning towards reading the comic book series instead because it's the original version of The Walking Dead. My favorite books are Common Sense by Thomas Paine, and I'm loving the book called When God Winks, by Squire Rushnell, and No Pity, by James P. Shapiro. My favorite movies would have to be 12 years a Slave, 2001: A Space Odyssey, and Frozen. I love listening to the song Let it Go, by Idina Menzel.

What autistic experiences would you like to see more of, when it comes to storytelling efforts like books, movies, and/or TV shows?

A more diversified sense of Autistic life. For example, I wish there were more media attention on the fact that many Autistic people live independently, with life-fulfilling experiences in the world. This would attract Autistic people to live with dignity, independence, and with the same supports many others get from society.

Showing how Autistic people are included in society is important. I really loved watching "Ghost Whisperer, Season 2, Episode 4 because it showed two Autistic people that were living together independently and almost showed a perfect example of Autistic life. Though, there were some glitches with that too, because the main character and the husband said things that led to society fearing autism. I really feel they should be showing how Autistic people are Human just like Neurotypical people, instead of showing us like we are robots, unemotional, and/or can't do much. We are a living example of the fact that we do get it, we just take time to actually do it. Once we do get it, do it, we perfect it better than Neurotypicals would have ever done it.  If the media shows Autistic people need the support, but can be independent at the same time, it will start changing society's perceptions.

What are some things you'd like the media and other people to stop saying about autistic people?

The media needs to show that Autistic people have just as much potential as Neurotypical people do, we just need more support sometimes. They need to stop convincing society that being Autistic should be feared. I hope the media stops sending out messages that Autistic people need to be cured, like we are a disease and wrong for society. The media's message creates a sense that Autistic people are unemotional, not empathetic, needing constant attention, and not able to grow like Neurotypical people do. We are Human too, and we have every right to live with self-determination,  just as anyone else does and is capable of. We may be disabled, but we are not less than Human. Self-Determination is not a privilege, it's a right! Plus, we are not always egocentric, and ego-centrism is a Human trait sometimes, not an Autistic one. We are trying to cope with Neurotypical standards in society which were developed over hundreds of years because of a perception that disability is wrong in society. Who is is to say disability or being Autistic is wrong? Being Autistic is a part of Humanity we all need to embrace. The media needs to realize that in Humanity, everyone lives to be the person they AUT to be.

The media pushes society away from the mindset that Autistics have our own space, have our own way of doing things, and have our communication to express ourselves to the world. The media needs to learn that Autistic culture exists like any other culture does! The media needs to understand that Autistic people are not, by any means, broken, evil, or not a part of the Human race. Humanity is a part of what makes all of us one in nature. So, let's stop fighting. Let's stop hurting each other, and let's begin a beautiful society the world needs now!

If you could change one thing to make the world more friendly to autistic people, what would it be?

Allow everyone to be non-judgemental and accept ALL people and animals in nature, so anyone can live their life with the potential they have to fulfill their life's mission. Everyone does not have the same mission, and not everyone will live their life the same way, but everyone lives to work hard with support from people around them. Every Autistic person needs to be allowed to stim if they want, repeat things when needed, or express themselves about what we want and need (not what Neurotypicals want and need from US!)  Every one, including Autistic people, need to be Brave enough, like Sara Bareilles says in her song, and no one should be afraid to speak their mind to get their point across when necessary, by using the communication we each feel most comfortable with.

Every voice counts in the world, Autistic or Not, so people who try to influence Autistic voices should not be tolerated. We all make up society, so let's make a society that the world and the universe could be proud of, by showing interdependence throughout the world. ACCEPT!

Wednesday, April 23, 2014

Autism Acceptance Month 2014: Matt Friedman

This month we're asking our autistic community members What Do You Want? What Do You Need? We're featuring their answers all April long, right here. Today we're having a conversation with Autistic artist Matt Friedman. Please read, listen, and share.

What are some things you like people to know about you?

I self-identify as autistic, and am happy to remain so. I work as a grant writer for a national nonprofit organization serving children in poverty. Besides raising funds, I also record and categorize all donations we receive. It’s a role that’s well-suited for my systematic mind. My employer knows I am autistic and lets me know how much my talents are appreciated.

Superficially, people would describe me as quiet, polite, and intensely private. Those who care to look beneath the surface have an inkling of my strong convictions, passions, and irreverence. Peer pressure is nonexistent for me. I prefer to be liked, but I’m quite accustomed to being “that odd fellow who makes us all a little uncomfortable.” I also like to draw cartoons.

What are some things that make you happy? Why?

I enjoy cooking adventurously. New and unusual flavor combinations excite me. I like to make exotic, yet comforting food: savory waffle dishes, hot and spicy stews with cold toppings, and foods with fun names, like bibimbap and shakshuka. I’m not an overly talented chef, so cooking for one takes the pressure off. But I’m pleased to say most of my experiments turn out well.

Every week I draw a new cartoon I’m happy. I’m in my fifth year of doing my webcomic [www.DudeImAnAspie.com] with the obvious topics long since exhausted, so to keep going has meant learning how my creative process works, and how to find inspiration in unexpected places. Each week I start with a blank page and try to fill it with something uniquely my own. If I can find something that demands to be said, and translate my vision to paper, then I’ve done something worthwhile for the week.

What are some things you avoid whenever possible? Why?

My peace of mind and well-being come first in all I do. To that end, I seek to minimize chaotic and unpredictable elements, the source of which is often other people. I shop at stores that are uncrowded. I drive the back roads that have less traffic. I go for walks in quiet, natural settings, where I’m unlikely to see other people. I avoid the news. I also avoid travel, because it’s a maze of decisions and logistics, but I hope to find a workaround for that, because I’d like to experience new places.

What features does your ideal living space have, and why?

My home is the only place I’m truly at ease. My house is far from ideal for me, but once I’m settled I don’t like change, so I’ve been here ten years and counting. My furniture and material things are minimal. I have plants but no animals. Some of my walls are painted bold colors. My computer room is jungle green, which makes a serene space. My ideal home would be far out in the country with open space, but with access to all the comforts of civilization. And I’d probably thrive in a climate without a real winter.

When I’m working, my ideal space would be free from distractions, because my job demands careful focus. I work in an open office with no walls and no doors, which is a challenge, to say the least. I prefer not to listen to others’ music, have others control the temperature, or have others sitting or conversing in my proximity. However, today’s workplace requires compromise, and at times sacrifice, for the good of the team. I think any open plan office should include a dedicated quiet space. Quiet should always be an available option.

What are your favorite books, movies, and/or TV shows?

My current obsession is Breaking Bad. I came to it very late, and very unintentionally, because it’s a drastic departure from my usual tastes. I’d say that I’ve found my own inner Heisenberg. And that’s a good thing, stay with me … being autistic means life pushes you around, a lot. If you’re going to survive, there are times you need to act decisively, be a hard-ass, and look out for yourself above others. I think self-advocacy is a lot like that. Furthermore, many of us on the spectrum have times we don’t like ourselves very much, so we fantasize about being someone else, who doesn’t have the problems we do. It’s a thrill to cheer on Walt as long as things go well, and then when all hell breaks loose, we can say, “Okay, maybe my old boring self isn’t so bad.”

My musical tastes have also undergone a recent metamorphosis. When I have music on, it’s either classical, chillout, or ambient. I found myself craving something different in music, whatever unclutters my mind and distracts me from everyday anxieties and concerns.

What autistic experiences would you like to see more of, when it comes to storytelling efforts like books, movies, and/or TV shows?

Too many movies portray white male Aspies, with a dead relative as a catalyst for their quest for “independence” or whatever. My favorite autistic movie character is Nick in White Frog, who is Asian. That movie is great because it spotlights lesser-known autistic traits, like persistence, and the pursuit of truth, more so than special interests and talents. Sonya Cross on The Bridge generated positive awareness, and thoughtful discussions about autism in the review comments. Some people say Lemongrab on Adventure Time is autistic, but I don’t see it. I think he’s just a nut.

What are some things you'd like the media and other people to stop saying about autistic people?

My blood boils whenever I see an anti-vaccination spokesperson given a platform under the guise of “autism awareness.” Their movement is a public health threat, and we cannot ignore them; we need to call them out on their B.S. There’s a lot of fear out there about autism, and for some people, that fear is bigger than the risk of infectious, potentially fatal disease. It seems impossible to even begin a dialogue with them, but as a starting point, why are they so afraid of autism? Imagine if we could just get past that fear.

If you could change one thing to make the world more friendly to autistic people, what would it be?

I feel that most people are fundamentally on a different wavelength from me, so that we’re incapable of completely connecting. Many autistic people experience this devastating disconnection, feeling “alone among others.” Many of us turn to escapism to make it through each day, through video games, or role playing, or internet communities. I think these things make good distractions, but poor substitutes for human companionship. We do have a need to belong, to form emotional bonds, to relate to others on more than a superficial level, yet we can’t find these things by traditional avenues. I hope people know large numbers of us have these unspoken, unmet needs, and maybe new mechanisms will arise to meet those needs.