Wednesday, September 10, 2014

Questions for Alec, an Interview on Living Life with Autism, Part 1, by D.A. Charles, Making an Impact, Alec Frazier, and Autistic Reality

Interview by D.A. Charles at Making an Impact


Hello Everyone.
It’s my pleasure to introduce my friend, Alec Frazier. Hello Alec, thanks for taking the time out of your schedule to sit down with us today.

Alec Frazier
Hello everyone! It’s great to speak with you! Thank you, Denise, for interviewing me!

As I mentioned on my Facebook post, Alec is autistic and has a number of other diagnoses as well. My career experiences have exposed me to a wealth of disability related information, but I’ll be the first to admit that my experience with conditions on the autism spectrum is very limited. I had questions for Alec and thought you might too, and he’s graciously agreed to answer them.

I have the following diagnoses, which shape my life a great deal:

Hereditary Hemorrhagic Telangiectasia (HHT)
This is a disorder of the blood vessels, which gives me higher risk of stroke, nosebleed, hemorrhage, and other related difficulties. It also means that I am more susceptible to infection. HHT used to be called Osler Weber Rendu Syndrome. It is usually hereditary, through the female line in the family, and my mother has it as does her aunt. I found out that I had it after I got a stroke. I was rushed to the hospital, where they caught it on time, and have since altered my life accordingly. It was found that I had three lesions in my brain, and one in my lung. I have had brain surgery to glue one of the lesions that this is left on my brain. This actually took only about an hour, in which the doctors inserted a catheter into my groin, sending it up through a blood vessel and into my brain. I actually felt the catheter moving in my brain and asked them if that was what it was. They said, “Yes, now shut up!” I know that I will need additional surgeries to correct the other lesions. For the remaining lesions in my brain, they will not risk gluing again. Instead, they will use gamma radiation.

Hip Dysplasia
I was born in a breach birth, with my bottom coming out first in my head last. This caused, or at least contributed to my having Hip Dysplasia. What this meant for me is that the pelvic material was there, but the ball and socket joint was not formed. Prior to my birth, this would have meant youth in a wheelchair with later life being spent with successive artificial hip transplants. However, in the month prior to my birth, two Japanese babies had successfully had a new procedure done. Others were not so lucky, and died. I was the first person in North America to have the procedure done successfully. The new procedure entailed having several operations and other procedures done to electrostatically stimulate bone growth into forming the ball and socket joints. I then spent a year in a full body cast, and another year in traction. It is safe to say, that if I were born any earlier or at a different hospital I would not have the ability to walk today.

Sensory Processing Disorder (SPD)
Formerly known as Sensory Integration Dysfunction, many people have it, especially people on the autism spectrum, but few know that it has a name. Sensory Processing Disorder entails having higher than average awareness of input from one’s senses. Sounds are louder. Smells are stronger. Tastes are more acute. Textures are more noticeable. Visuals are more detailed. People with Sensory Processing Disorder are often also much more susceptible to sudden sensory input. This can make life distracting to say the least, and very difficult in extreme cases. To me, this means that extremely large crowds can be troublesome. Although I am able to sit in large classes of almost 500 people, if those people were partying and making a lot of noise it would be difficult. Flickering fluorescent lights are a problem for me, as is sudden touching. Make no mistake though, I love to give and receive hugs!

Attention Deficit Disorder (ADD)
People with ADD are very easily distracted, with our attentions drawn elsewhere. Sudden occurrences or interesting objects can easily distract us from previous involvements. One ramification this has for me is that reading is extremely difficult, since I am so easily distracted. As a result, I get my school books in digital format, so they can be read to me while I am also doing a secondary task to occupy my mind. There are many teachers and professors will tell you that a student who is doing work on a computer in class is easily distracted from their lecture. Because of my ADD, being on a computer in class actually helps me to pay attention by focusing my loose attentions elsewhere.

Dysgraphia and Digital Atonia
Dysgraphia is to writing as dyslexia is to reading. Whereas dyslexia is a disorder hampering understanding of the ordering of letters and words, dysgraphia is a disorder hampering the proper placement of letters and words while writing. Many people believe improper placement when writing is a symptom of dyslexia, when in fact it is dysgraphia. This is because dysgraphia is not nearly as well-known as dyslexia. Digital Atonia is a lack of muscle development in the hands leading to poor eye-brain-hand coordination. To counter my dysgraphia and digital atonia, I dictate papers on Dragon NaturallySpeaking software provided by the Nuance Corporation. I am able to train it to recognize my voice, and I am able to speak to it naturally, while it transcribes my speech on various programs such as Microsoft Word or Facebook.

Bipolar Disorder
Bipolar disorder used to be called manic depression. It is not called that anymore, but unfortunately many people do not recognize this fact. Bipolar disorder entails having periods of high, happy feelings, and periods of low, unhappy feelings. People have a right not to take medication, and I am against radical amounts of medication. But for me, moderate amounts of medication have helped with a number of my diagnoses, including the high-low swings of bipolar disorder.

Obsessive-Compulsive Disorder (OCD)
Obsessive-Compulsive Disorder or OCD is about exactly that: obsessions with particular topics and compulsions to do specific things. There is a misconception that OCD is almost completely about the compulsion part. This is not true. For me, my obsessions involve focusing in detail on various topics, such as architecture, government, photography, and Star Trek. You’ll notice that these obsessions are also hobbies. In my world, if I am going to have obsessions, then they might as well be fun! For me, compulsions have been about such things as straightening out the cricks in my neck and doing things favoring the right side of my body.

Asperger’s Syndrome
Asperger’s Syndrome, which is a form of Autism, is not a disorder but a form of neurodiversity. Neurodiversity is a recognized form of diversity, entailing diversity of the forms of the mind. It is as natural as diversity of skin color and sexual orientation. It is also inherent as is gender and religious affiliation. Asperger’s Syndrome is a form of autism which is no longer officially recognized by the diagnostic index, but it should be. Instead, all formerly recognized forms of autism are lumped together under the title Autism Spectrum Disorder (ASD). In reality, there are vast differences between various types of autism. Asperger’s Syndrome has traditionally been called a high functioning form of autism. Those of us in the autistic rights movements are trying to reject the terms high and low functioning as those terms have their origins in the institutional setting where they were used to discriminate against various types of patients. Instead of using the terms high and low functioning, people should just describe the person in question. Like people with all forms of autism, people with Asperger’s Syndrome, I have a tough time interacting socially, and can have mood swings and a degree of emotional variation from time to time. Over the 28 years of my life, I had become to a large degree able to socialize with other people in a structured setting. Therefore I have a tendency to find friends in clubs and organizations of like-minded people. Interpersonal relationships between myself and other individuals tend to be more difficult. I do get pretty emotional at times, but I do my best to keep this in check on a social level.

I made Alec’s acquaintance through a common bond. We were both readers of “Little Green and Easy Bella,” a Twilight Fanfiction story written by our mutual friend, Betti Gefecht.

I adore “Little Green,” he’s an endearing character with multiple layers, one of those layers being autism. When I read the story I felt like I was seeing the world through his eyes, the story is a sensory experience for me that I don’t often discover reading fiction. I can’t describe it other than to say it is just so much more…

Alec, what drew you to Little Green?

I was drawn to Little Green for a number of reasons. Betti lives in Germany, a nation that I adore in part because my mother is from that land. I also enjoy that country because of its liberal political, economic, and social tradition, as well as all of the wonderful culture and history in that nation. Betti is also very creative, quite artistically inclined, and very loving. She is also very crazy, in a good way! After all, you have to be crazy to live on this planet! When I started reading her fiction, Betti said that she had never met a person with autism, but had heard a great deal about it. This is interesting, because I am sure that a majority of the Western human population would say this. It is doubly interesting because I am sure that a majority of the Western human population has actually met and is even friends with an autistic person. Those of us on the higher end of the spectrum tend to slip by is just odd or quirky.

I then proceeded to befriend Betti, and tell her a little bit about what it is like living with autism. She was very eager and willing to learn! Many autistic activists believe that only a person with autism should be able to write about a person with autism. I think that that is just silly! Many men write about women! Many African-Americans write about white people! In fact, the best of writers prove their mettle by writing very well about people whom they have nothing in common with. I do believe that autistic writers should be more prevalent, but I also do not believe that autistic writers who write poorly should be coddled.

Betti Gefecht with Alec Frazier in Stade, Germany.
I went to visit Betti at her wonderful home in Bützfleth, outside of Stade, in the Lower Saxon land of Germany. Her home has been built by her husband, Liber Freeman, and she has designed much of the decoration. It even has a giant sign outside saying that it is her house! Betti used to be a quite popular musician, and has also made paintings, dolls, and other artwork. Freeman currently produces music and makes the most beautiful guitars on the planet. I spent fifteen minutes with him, and my autdar (like gaydar, but for autistic people) was going crazy. I do believe that he is autistic, and that that is part of why he is such a multi-talented creator! So although Betti had claimed that she had never met somebody with autism, it turns out that she has actually been living most of her life in a very loving relationship with an autistic genius. The two of them have an absolutely wonderful world together! Everybody should be as lucky in life as they have been! I have since adopted them as my Aunt and Uncle.

The Edwards in the Fanfiction fandom come in many incarnations. While Betti’s Edward is autistic, mine has a spinal cord injury. Do you have a favorite “fic” that features a Twi-character whose circumstances help bring awareness to others about a specific issue?

I am certainly a proponent of the way that Little Green and Easybella promotes autism awareness. Your own fiction was phenomenal in its promotion of people with various disabilities. I am also a fan of various fictions promoting successful character development for people who have formerly been bullied. I like high school reunion fictions, and fictions where someone has come back from a long time living somewhere else after redefining themselves. I was bullied quite a bit as a kid, and have now made quite a name for myself in my field. Seeing fictions where people are able to prove successfully that they have gone somewhere in life is a true wonder to behold. I myself have accomplished just that; I recently went to my high school’s ten year reunion, and many people told me that they were thoroughly impressed with how far I have gotten since then! I also like slash fiction, since I am gay and like reading about positive gay role models. So in short, my favorite fiction that helps bring awareness to something is Betti’s Little Green and Easybella.

You recently endorsed Amber Johnson’s book, Puddle Jumping which was recently released, as you’re doing with my story, Impact. What does that endorsement mean for potential readers?

The back and front covers of Amber L. Johnsons  Puddle Jumping, with Alec Frazier’s endorsement on the back cover along with his website. Amber L. Johnson, 2014.
My endorsement of Puddle Jumping should be read as twofold. First of all, it is a reaffirmation on the part of an autistic advocate and self-advocate that the book in question is indeed representative of the real life and world of an autistic person. Please bear in mind that a number of more radical people in the autistic activism world had attacked Amber Johnson for her portrayal of Colton Neely as an autistic individual. They claimed that they were not like Colton, and therefore the story was hogwash. I disagree, and would like to cite the fact that autism is a spectrum disorder with a great variety of people in it. One of those people could very well be Colton Neely.

The second factor in my endorsement, which plays a part in any endorsement that I make, is the fact that I am someone with disabilities representing the disabled population, and the advocacy movement of that population, giving my full-hearted approval to a book that deserves notice. I do not claim to speak for the whole disabled population, or even the whole autistic population. I do, however, claim to speak as a person with a disability, which happens to be autism who appreciates the said book, and its endeavors to represent those populations. The endorsement says that I would recommend it to others with an interest in disability, autism, advocacy, and a realistic portrayal of those things. I cannot make the entire disabled or autistic population appreciate something, because that is up to the individuals themselves. Nonetheless, I can encourage it. That is what Amber or anyone gets out of my endorsement. What I get out of the endorsement is increased name recognition for my firm, Autistic Reality, as well as a recognition that these endeavors are the kinds of things I look favorably upon.

You’ve done some writing of your own. Would you mind telling my readers about your literary review and why this is a project so close to your heart?

Copies of the first edition of Without Fear: The First Autistic Superhero on sale at the world’s only Museum of disABILITY History in Buffalo, New York.
My literary review profiles the first positively, realistically portrayed autistic superhero, Tim Urich as the Daredevil of the future as written by Brian Michael Bendis for Marvel Comics. Urich’s appearances take place in two comic book story arcs, Daredevil: Wake Up, and Daredevil: End of Days. I have done the literary review from a disability studies point of view. It has been for sale at a number of comic book conventions and conferences, including Ithacon in Ithaca, New York, Cripping the Comicon in Syracuse, New York, and Free Comic Book Day in Buffalo, New York. I have also given copies to some of my favorite comic book creators, including the legendary writer Roger Stern, and prolific animator Warren Greenwood. I will be giving a copy to the legendary Stan Lee next year. The book is so important to me because it profiles a perfect example of my philosophy of Autistic Reality. The character in the books is shown as living his life with autism, not living an autistic life. A key philosophical point of view of Autistic Reality is that autism should not have to define the individual. Autism is not the main feature of the character in the books, nor should it be. Instead, the books show how the character is living a productive life as an individual, who just so happens to be autistic. In this way, the character is human first, themselves second, and the other identity, autism, is incidental to that.

You are a super hero expert. Who’s your favorite super hero and why? What’s your most memorable super hero moment?  You do public Relations for Visions Comic Art Group, can you tell us a little about that?

A bit of background first. I have been reading comic books of some form or another since I was at least four years old. I started off with Scrooge McDuck comics, and have been reading mainstream superhero comics since shortly thereafter. I have a number of favorite superheroes for different reasons. I like the regular Daredevil, Matt Murdock, because he is the original disabled superhero, being blind and yet extremely powerful with his extra senses and his success in life. I also like Wiccan and Hulkling of the Young Avengers because they are young guys who are gay, madly in love, and save the world on a regular basis. Lastly, I like the original Wildstorm Comics team The Authority, because they actually get stuff done. Imagine a team of superheroes who are not afraid to overthrow governments, kill people, and even take over the United States in order to create a better world. It’s kind of messed up, but it makes for a very interesting read. Please keep in mind that that title is not fit for children.

Alec Frazier’s collection of Northstar comics. The first issue on the top is an extremely rare completely mint edition of the coming-out issue, still in its original bag from 1992. The first issue on the bottom is a limited edition copy of the wedding issue. The remaining issues on the wall are draw your own cover variants of the wedding issue done by a number of artists.
I have two most memorable superhero moments. The first one took place back in 1992, when the superhero Northstar said the words “I am gay!” becoming the first ever superhero to come out of the closet as homosexual. This was courageous, as only a few years earlier it was illegal to do this. There have since been a number of superheroes who have come out as homosexual, bisexual, transsexual, and many other sexual orientations. Northstar himself has gotten married in the meantime.

Alec Frazier’s copy of Daredevil: End of Days #7.
The second moment was in Daredevil: End of Days #7, which premiered on April 17, 2013. In it, the Daredevil of the future takes off his mask, revealing that he is the autistic Tim Urich. It is a watershed moment in comics. In the 1980s, there was an autistic character named Dehman Doosha, also known as Jonny Do, in a team called Psi-Force put out by Marvel Comics. However, the character’s autism was not portrayed correctly at all, and it can be argued therefore that he did not have autism at all. Tim Urich is the very first character to be properly and positively portrayed with autism. Since then, a man named Dave Kot has come out with a series called Face Value Comics, which heavily emphasizes the autism of the main character. I personally do not agree with this point of view, as autism should not have to define us on the autism spectrum, but I encourage any who are interested to look into Face Value Comics.

Creators at the first meeting of the current incarnation of Visions Comic Art Group. Emil Novak, Sr. is on the right.

As I mentioned, I have always been involved with comics. In 2004 or 2005, I joined the oldest continuously active comic book club in the country, and possibly the world, the Comic Book Club of Ithaca (CBCI), in Ithaca, New York. I started cohosting a number of their conventions, and when I moved to Buffalo, I started cohosting Buffalo Comicon. I also take a number of photos at those conventions. There is a multitalented genius of a businessman in Buffalo, New York named Emil Novak, Sr. He runs Queen City Bookstore, the local comic book store, and he also runs Buffalo Comicon. In the 1980s, he started a group called Visions Comic Art Group, a group of local artists, writers, and other artistic talent to create comics right here in Buffalo. He recently restarted the group in its current incarnation. I have been privileged to be their official publicist and photographer from the beginning of the current incarnation. We have since put out an anthology over one hundred pages long, and will be coming out with another one in October. They have also helped me with the printing of my book. I owe a lot to Emil Novak, Sr. for mentoring me through the creative process.

Patti has asked- If your life was a movie, what actor would portray you and why?

I would probably go with having Jude Law play me. His hair is naturally similar to mine, although he often wears a hairpiece for his roles. He is also not averse to packing on the pounds for a role. If he could do that the same way that Christian Bale did for American Hustle, that would be great. Jude Law is also known for intellectual roles, of which my life certainly would fit the bill. Yes, he is over a decade older me, but I would want the majority of my movie to be set ten years from now, when I am more established. He also does very well with glasses. In fact, he played Karenin in Anna Karenina, which if you subtract the beard, resembles an older me quite well.  However, I am not only intellectual, but also a very fun person with a great sense of humor and a number of quirks. If the movie were to take place about thirty years down the road, I would have preferred for the late James Gandolfini to have the role. Although Jude Law best embodies me as an intellectual, Gandolfini would be best playing me as a fun guy. Overall, I would probably want Christopher Heyerdahl to narrate the story of my life in the voice of Marcus of the Volturi from Twilight. The life he would be narrating would probably not fit that voice, but there is so much authority in Marcus’s tone that I demand it!

This ends our first installment of Alecs interview. Join us next week for Alec's advice on travel, transportation and education and to learn about the buffalo who travels the world!

Thank you for joining us, hope to see you next time.

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