Our goal is to help TPGA readers understand that autistic people are people who have interesting, complicated lives and who are as diverse and varied as any other population united by a label.
are the people in each other’s neighborhoods, and the more we know
about each other — the more visible autistic people and children are —
the more common autism acceptance will be. That is our hope.
Today we’re talking with Paula C. Durbin-Westby who has been running an Autism Awareness Day and Month campaign all month in the name of “ACCEPTANCE, not tolerance, not ‘yes, but…,’ just acceptance. Pro-neurodiversity, pro-supports and services, against ‘cures.'”
Paula also recorded a video version of her answers to our questionnaire, for greater accessibility.
What is your name?
Paula C. Durbin-Westby- I like the C.- it’s a really pretty shade of reddish-orange.
Do you have a website?
What would a one-sentence description of yourself sound like?
I am intensely focused on autistic activism, music, and homeschooling my child, sometimes all three at once, with a bit of visual art thrown in.
Do you have any autistic superpowers? What are they?
I do. They are not too spectacular, though. These are things that are not in the DSM but that many Autistic people have that are kind of different, unusual, and sometimes maybe helpful.
I have had a hearing test that indicated that my hearing was 10% above normal, and I used to tune pianos and pipe organs, and my eye doctor once said that the worst my vision could have been when I was a child was 20/10, helping me to be able to draw things in a lot of detail.
I started playing the piano when I was four. My mother said I had been asking her lessons for years, at that point.
I have hyperlexia — I could read at a very early age, with comprehension, like many people who are hyperlexic do, and I read books and write indexes for a living. My mother says no one knows how I learned to read — I could just do it.
I have synesthesia for colors and sounds, and music notes and colors, and letters and colors, and some other stuff.
I am an artist — I can draw many things easily, although I need to work at it to make it happen on a regular basis, and I have not done that for quite a while.
I have a partially photographic memory, but not for faces!
What are some situations that make you happy, or satisfied?
Feeling like I have made a (positive) difference in someone’s life.
Playing a piece of music without hitting too many wrong notes, and making it sound musical — that’s not easy with my visual processing, motor coordination, and concentration difficulties.
Writing an index and having the author and/or the publisher like it.
Having my son come up and give me BIG hugs and tell me he’s being the Temple Grandin squeeze machine.
What are some situations that make you sad, or anxious?
Recently, it’s been that people don’t understand the seriousness of jumping to the defense of someone who murders a person with a disability. I have been very sad about that. Sometimes when I talk about this, I get positioned as a “self-advocate” only, erasing the fact that I am also a mother speaking knowledgably about this topic.
I am anxious for the future of children who are being propelled into earlier and earlier “intervention,” hoping to make them non-autistic and potentially causing them trouble later on even if they give the outward appearance of “improvement.” Let them be kids, Autistic kids!, at the same time they are being given educational opportunities (it’s all about learning things, so I call it education, not “intervention”) that will work for that individual Autistic person.
I get anxious when I put a potentially controversial idea “out there” into the autism or the research community, or other community, and don’t know how it will be received. Once it is out there, whether the comments are negative or positive, I try to work with and respond to questions and comments in a constructive way. But right before I put out a new idea — that’s nerve-wracking, wondering if people will think I have jumped off the deep edge this time! (which I think means the same as “going out on a limb,” which is seen as dangerous and not necessarily the circumspect thing to do!).
And, aftershocks make me anxious. I live at ground zero of the August 23 2011 east coast earthquake and we are still having some significant aftershocks seven months later.
Are there specific topics you find particularly compelling?
Autism Acceptance Day! And Autism Acceptance Month, and this year, International Autism Acceptance Year, April 2012-April 2013! And, in general, the creation of Autistic and supporter communities. The Autistic community and our supporters have developed events, holidays, and other expressions of community involvement. Autistic Pride Day was started a number of years ago by the group Aspies for Freedom. Autistics Speaking Day began in 2009, the creation of Corina Becker and Kathryn Bjornstad-Kelly. Larger in-person events include Autreat.
On the other hand, we need to remember the difficult, and even horrifying, times. On Friday March 30, people in many cities attended candlelight vigils to mourn and remember people with disabilities who have been murdered by family members or caregivers. That vigil effort was organized by Zoe Gross of the Autistic Self Advocacy Network. The vigils were sparked by the murder of George Hodgins, age 22, by his mother. A virtual candlelight vigil was created, and this is something our community does well— including people who cannot be present in person but who wish to participate. As with other minority communities, we are creating a sense of identity, pride, and accomplishment, as well as a time to pause and reflect, as a way to build upon our strengths, learn to work together to promote our own interests and concerns, and ultimately to foster a greater societal acceptance of people with disabilities including autism. Sadly, on the day after the March 30th vigil, Daniel Corby, age 4, was murdered by his mother. She said she did it because he was Autistic.
We clearly still have a lot of work to do to create acceptance of Autistic people.
What are your preferred ways to be social?
I like to communicate online, in writing. Speech is my AAC; writing is my main form of communication. Not the other way around. Speech is really clunky for me, although at times I give the appearance of being quite vocally articulate. (Oh, by the way I am reading all of this from a script… except this sentence…) Recently I walked up to someone who was sitting in his car, with whom I wanted to “talk.” I asked him to take out his cell phone and I was going to stand there and text back and forth with him, with the car window rolled down. But, he had forgotten his phone. I also grab a pencil and paper when I can’t speak. I can’t speak at least several times a week, in a major way, and several times a day, but a lot of those aren’t noticeable.
Hmmm…. You said “social” and I went off on communication. Social? Social? That thing where you spend time with a person, in person? I like to do things, specific activities, with people. I don’t like “just hanging out.” So, with my choir, I like to sing, direct, work on music. With my choir members, if I am spending time with them outside of choir? I like to still do music! I like to work on advocacy initiatives and projects with people. It all sounds like work, doesn’t it?! I like to spend time with children, with my son and his friends. That’s the main kind of “real” socializing I do, hanging out with moms and kids I like. It is very relaxing, and although many adults say “What do you do for yourself?”, and look mystified when I say “I hang out with my kid,” which is the last thing they’d think of doing for themselves, that’s what I enjoy the best because I don’t get to spend enough time with him and a few years ago, I was working so hard I got to spend hardly any time with him. That was the most difficult period of my life.
What traits do you prize in a friend, or companion?
Honesty, directness, even when it is harder to take. Do not sugar-coat stuff; I won’t understand you anyway, most likely. I prize people who believe that my truth is my truth, even if they have a different perspective. I prize people who encourage me to be the best Autistic person I can be, including music, writing, art, child-rearing, whatever Autistic thing I am doing (Autistic because it’s me!).
Are there parts of your life you wish were easier?
Oh yes. I wish my financial situation was a lot better. It is bad enough to be frightening, and at some point, poverty seems fairly inevitable. It causes me almost constant anxiety. No, it’s not anxiety caused by being Autistic; it’s anxiety caused by an untenable financial situation. Not everything that goes wrong in the world is caused by autism! (I say this because sometimes people don’t look out of the “autism world” at other things that could be taking place.)
What’s the next big goal you have for yourself?
After that last answer, I should say “Getting a job.” I do have two part-time jobs, but my financial situation is bad enough that they aren’t enough. I am currently doing some marketing, which is something I did not have to do for almost fifteen years. I had so much work, I turned down about 15 projects a year, even with no dedicated marketing efforts.
Leaving aside the job question for a moment, what I really want to be able to do is provide more educational experiences for my child, including me being able to spend more time working with him on his projects. I am homeschooling him, and wishing I could spend more time just doing that rather than trying to balance several jobs and my advocacy work along with it.
I want to write an index that will win the H.W. Wilson Award for excellence in indexing! Some day…
I want to be an even better organist and choir director.
I might want to write a book, but I’m more likely to write articles for inclusion in collections.
I want to do more public speaking.
I don’t have one, huge, overarching goal, but a lot of things that I am constantly working on. My writing is very important to me, and I have become a much stronger writer in the past six years, since starting to write about autism.
What does bliss feel like to you?
Being close to my son, snuggling up and reading with him. Hearing him say of my speech production, which can frustrate me if I get stuck on one word, “Mommy, stuttering: It’s a way of life! Don’t ever be mad at yourself because you stutter.” And, “Autistic moms are the best moms!”
Other blissful things are playing the organ! And singing! And seeing shiny things! And, green!
Sometimes I can be right in the middle of worrying about how to pay the bills and I will see a sparkly rainbow from one of my hanging crystals, and I will be filled with ecstatic joy! And, I can’t even worry during that time. I know; I’ve tried it, as an experiment. I picked something to worry about, on purpose, which is not too hard to do, and then I would look at something shiny and try to keep worrying, like the ocean, the sunlight on the ocean or something else shiny, and I could not do it. So, I wear a lot of cheap, sparkly jewelry, which helps me to find moments of joy to counter the stress from my finances. And when I am really upset, playing the organ helps calm me down and feel OK again. Maybe it’s controlled hand flapping! Plus the sounds of music are so exquisite. All music can be this blissful, not just my preferred Baroque sacred music.
In general, moments of bliss can come at any time, for any reason, and I like to learn how to capture, retain, and use them to my advantage. Why not?
P.S. Happy Autism Acceptance Day and happy Autism Acceptance Month, and happy Autism Acceptance Year!!!! …….. Whee! This was fun!