Wednesday, September 17, 2014

Part Two- Questions for Alec, an Interview on Living Life with Autism.

Hello Everyone,

Today bring us part two of our question and answer session with Alec Frazier as he shares a bit of advice on education and travel tips for families who have an individual with autism. We also have a surprise guest today, Alec's special travel partner, Millard.

Take it away Alec.

I’ve heard that you’re quite the globe trotter. Do you have a favorite place you’d go to again and again if you could? Someplace you’ve never been but would love to see? Is there someplace you’ve visited that would be an ideal travel destination for a family who has a member that is autistic?

The Haunted Mansion at Walt Disney World, Alec Frazier’s favorite amusement park attraction ever!

I would love to go to Walt Disney World over and over again! I have already been there four times. They keep on adding new things, and soon they will have a land dedicated to James Cameron’s Avatar, which I am looking forward to a great deal! I would love to go back to Rome, London, Paris, Berlin, Florence, Venice, and a number of other places now that I have a proper camera. In terms of places I have not gone before in my life, I would like to go to Vienna and Prague. There are a number of other places that I would be interested in, such as Bavaria, St. Petersburg, Russia, and Moscow, Russia. I am not going to go to Russia until they rescind their horrible laws against homosexuality. I would also like to go to Amsterdam and The Hague, as well as Madrid. When I travel somewhere, I go to take photographs, as well as enjoy the beautiful architecture. Landscaping is also something I enjoy tremendously. I also collect capital buildings, and would love to visit more of them!

Alec Frazier in the center of the Main Reading Room of the Library of Congress in Washington, DC.

For a family with an autistic individual, I would suggest that they visit a number of the sites in Washington, DC and New York City, as they are known for being very accessible to people with disabilities. For example, the Capitol Building and Library of Congress in Washington, DC are reasonably quiet compared to many other tourist attractions, and that is easy for someone with sensory difficulties. Government buildings tend to be very beautiful, as they are built to showcase the prestige of the populations they represent. I would also recommend a lot of other beautiful churches, other places of worship, and government buildings for the same reasons that I recommend government buildings. These government buildings and places of worship also have wide open spaces, which is important for people with autism, as we sometimes feel like our personal space is being encroached upon. It is also good to visit universities and places on their campuses because people are often trying to study, and they keep quiet. Overseas, and occasionally in the US, there are a number of monastic environments such as missions and abbeys were people have even taken vows of silence, and that is very easy on the ears.

Alec Frazier with the famous statue of FDR in his wheelchair at the FDR Memorial. A quote by Eleanor Roosevelt about her husband’s disability is available at wheelchair height and in braille behind the statue.

The Smithsonian Institution in Washington, DC and the major museums in New York City are extremely accessible because they are used to large numbers of people, and the larger the numbers of people, the more people with accessibility needs are expected to attend. The Smithsonian Institution is free, which is really quite awesome! I would recommend visiting monuments and memorials everywhere, as those tend to be quieter environments, and in the United States of America they also tend to be pretty accessible. A hallmark of disability design can be found in the Franklin Delano Roosevelt Memorial in Washington, DC, which features a statue of the president in a wheelchair, and a message on disability in braille in the main entrance. It should be noted that the disability community had to fight like hell for these features to be included. It is also very sensory friendly Memorial, with a lot of peacefully running water and tactile spaces. It should also be noted that people with fears of enclosed spaces should stay away from the interior of the Washington Monument and the dome climbs on many buildings, as these can be quite cramped. Museum buildings tend to be some of the more accessible places wherever you go in this country, with the more public ones like art museums, science museums, and museums run by national, state, and local governments being among the most accessible. If you are ever in Buffalo, New York, don’t forget to stop by the world’s only Museum of disABILITY History on Main Street!

Alec Frazier with lemurs in the Hagenbeck Zoo in Hamburg, Germany.

In Western Europe, many tourist sites tend to be very accessible, often more so than in the United States since they have improved on the ADA to a degree that we have not. I very highly recommend the Hagenbeck Zoo in Hamburg, Germany. It has spaces that are very accessible to people with mobility and sensory impairments. Keep in mind though that a lot of cute, friendly animals are allowed to roam free in that zoo. There is plenty to cuddle with! In Eastern Europe, however, accessibility still has a lot of catching up to do. I would also stay away from smaller castles and medieval buildings, because although the authorities that be try to retrofit those buildings, they are not always very successful. I have to admit that I have not traveled to Latin America, Africa, or Asia, but it should be noted that those places have a pretty poor record of accessibility for people with disabilities.

You recently shared your experiences using various modes of transportation during your trip to California, it sounds like you had a very enjoyable trip and navigated the transportation system well. Do you have any pointers for readers who are autistic or who might be traveling with an autistic child? Perhaps you have ideas to help lessen the sensory overload of navigating a crowded airport or being stuck on a long flight?

The key for all autistic people who wish to deal better with hectic public situations is to compartmentalize. You should view yourself as one unit, and the world around yourself as another unit. Then, and this can be kind of tricky, pick and choose the appropriate times and methods to deal with the world around yourself. Of course, this leads to temptation to shut yourself off completely from the world. Never do this! Be a part of the world, but establish healthy boundaries. This is the mental part of my tip. As for physical stimuli, I have noticed a number of autistic people using sound canceling headphones, and that might be a good idea. If someone takes issue with it, tell them that it is a disability accommodation. When traveling on an airplane, it is often very tempting to take the window seat. This actually squeezes you in with very limited means to maneuver. Take the aisle seat! That way, you have the most possible room during the majority of the flight, except when the flight attendants are serving. Bringing a book along is also a wonderful idea, but cassette tapes or something else to listen to will do just as well. For family members of autistic children and adults, please keep in mind that you have to be patient.

I will not lie. Once, airport police was called on me because I was overwhelmed. This was when I was already an adult, so I calmly told them that I was autistic and having sensory overload. They told me that they understood, and were just concerned about my safety. In the case of a child, it would be very useful to have a calm, collected guardian who can tell authorities the same thing. Also, airports often provide staff members to guide underaged minors through the process. Having one of these staff members accompany an autistic minor is a wonderful idea. Many autistic people, although not all, will eventually be able to navigate airports on their own.

And on the fun side of travel, because travel should be enjoyable… You don’t travel alone, your friend Millard has gone on a number of adventures with you. It appears this might be a family tradition. You’re not the only member of your family who travels with a companion are you? Scotch Tapir is quite the globetrotter as well. Could you tell us a little bit about this tradition? How did it start and who initiated it? I’ve got to admit, I’ve got a travel companion of my own. There are a number of pictures someplace on the internet that feature myself, my daughter Patti, our friend Debbie Powell and a sharp dressed guy with shades by the name of Pocket Edward. Good times, in ChicagoMaine

Millard the Buffalo at the Paulskirche in Frankfurt-am-Main, Germany, where that country’s first democratic Parliament took place in 1848.

Ha! Yes, I bought Millard the Buffalo at the gift shop in the student center of my university, the State University of New York at Buffalo. He has since gone a number of places, some mundane, and some very interesting. In the United States, he has gone around Buffalo, Ithaca, Southern California, New York City, and Colorado. In Europe, he has gone around Germany including Frankfurt, Hamburg, Cologne, and Stade. Some of the more exciting places he has been include Griffith Park Observatory, the San Diego Zoo, the Morgan Library and Museum, the Römer (seat of the Holy Roman Empire for at least 600 years), and the tomb of the three Magi in Cologne Cathedral. Some of the more intriguing places he has been include on top of a lily pad in the Denver Botanic Gardens, on a scale in a gas station in Batavia, New York, on an original staircase from the long since demolished Penn Station in New York City, on the praying hands of Father Junipero Sera at the Mission in San Diego, and even with an eight foot tall flower! Of course, I cannot begin to explain all of the crazy situations he has found himself in! I intend on taking him to every new land where I travel, and take photos of him with  many of the sites!

Scotch Tapir with the famous reclining Buddha of Wat Pho in Bangkok, Thailand.

When my father was a child, he had a little stuffed dog named Pinky. Through a series of unfortunate events, that dog was lost a few years ago. I offered to buy him a new stuffed friend. When we went to the gift shop at the Denver Zoo, we selected a small stuffed tapir. I named her Scotch is a joke. You get it? Scotch Tapir? The idea was that he would have something small, yet cuddly when he travels. He took it to the extreme, taking Scotch all over the world, especially Southeast Asia, and taking photos of her everywhere! Buddhist temples! On elephantback! At fortresses! Even on a lily pad—you can see where I got that idea! So when I bought Millard, I decided that he embodied something unique about me. Buffaloes are rugged and tough, yet often playful. I named him after one of the founders of my university, Millard Fillmore. While he was the first Chancellor of my university, Fillmore also held a very important job out of town. He was president of the United States! My dad’s girlfriend also has a stuffed rabbit named Wasz, which is short for Wazskawy Wabbit. Wasz’s trips have been significantly more limited.

Lucy the Wombat

It should be noted that everyone in my immediate family has a totem animal which they best embody and is best embodies them. I am playful, curious, and cuddly, so I am a wombat. My father is happy, loving, and also very playful, so he is a yellow lab. My brother has odd habits, is very rambunctious, and, you guessed it, playful, so he is an otter. My mother is multitalented, also loves to cuddle, and of course, playful, so she is a cuttlefish. Each of us has a stuffed animal version of our totem animal. My wombat is named Lucy, my mother’s cuttlefish is named Magic Fingers, I’m not sure what my brother named his otter, or if he still has it even (he lives a very wild life), and my father’s yellow lab is named Joyful. I have also given fellow fan fiction writer Betti Gefecht a lemur, which she has named Fulton, and which plays with her cat quite regularly! My home is also called The Wombatorium, and has its own Facebook page!
I see you as a very strong, self-directed young man who has embraced life. It sounds like you had a unique experience growing up. In a day when many kids who learned differently were segregated into “special” classrooms, your parents refused to do that. Can you tell my readers how that impacted your learning experience? Children can be cruel. Someone in my life was diagnosed at a very early age with a learning disability. Prior to being identified as a person with a disability this person was a social butterfly, being moved to a non-inclusive classroom created a stigma that lasted through out school and with that, socialization took a huge nosedive. How did being mainstreamed impact your social interactions? Do you feel your fellow students treated you like everyone else in a mainstreamed environment?

Julie Kearney, Alec Frazier’s Special Education teacher and caseworker during his senior year in high school with Alec Frazier when they were reunited during his ten year high school reunion.

In the short run, my learning experience in the mainstream population was both positive and negative. In the long run, it has been completely positive. As for the positives, I got to experience how everybody interacts with one another, I got to eventually make friends with other students, I got to experience the same learning and class lessons that everyone else did, and although at I frequently did not feel like everyone else, I was definitely treated like everyone else. In addition to that, I had caseworkers in the Special Education department who were very devoted in making sure that my cause was advanced throughout the school. My parents were, as you said, instrumental in making sure that I was treated with the respect that every human being deserves. They went above and beyond the call of duty, and made sure that by the time I was eighteen, I was ready to live on my own and support myself with a bank account, traveling on my own, an apartment, and control over my own finances.

Students did not always treat me as an equal. There was frequent bullying in public school, although the worst bullying came in community college. There is a piece of advice that people tell you which seems like a cliché, but it is very useful. You are better than the bullies. You are always better than the bullies! Gay rights advocate Dan Savage started a whole campaign telling people one simple message: It Gets Better. That is true, not just for the gay population, but for the disabled population as well. As a child, I was often frightened and did not get along well with others. Now, I am an empowered disability rights advocate who has gotten a standing ovation from JFK’s sister, passed two pieces of legislation, established his own advocacy firm, and even better, I have tons and tons of friends! It should be noted that my friends are almost all people without disabilities. After all, most of the human population does not have disabilities, so the same is true for my friends. No matter how much the bullying or pressure hurts, never give up. You will have a wonderful future!

Mary is having issues advocating for her daughter’s educational needs and asks how to overcome when a school fights you for giving a student what she needs? The IEP is a very important tool in a child’s educational plan. Can you provide other tips that might help Mary advocate for what her daughter needs?

Western New York Independent Living (WNYIL) in Buffalo, New York

The IEP is indeed very important! In fact, mine is still important in college. When my university was looking for proper accommodations to give me, they asked me for my IEP as a basis upon which to formulate accommodations. In addition to going to school, doing my independent advocacy work, and hanging out with friends, I also volunteer at the local Independent Living Center. The Rehabilitation Act of 1973 specifies that Centers for Independent Living, or CILs as they are also called, shall serve to benefit the disabled population all over the United States. Mary’s independent living center should probably have an educational advocate, or at least caseworkers who can help her. I know this because the center where I work has an educational advocate, but it also has a number of caseworkers assigned to individuals. However, CILs are only obligated to serve people as far as is mandated by law, and although some of them serve people beyond the requirements of the law, that is up to their discretion. If Mary is having an issue with not getting adequate services from her local CIL, there is always a grievance process to follow at that center. I hope that this advice helps a little bit.

Socialization is important for anyone, but even more so for someone who is autistic. It appears, if one were judging by your social networking sites, that you’re a very social person, yet you’ve stated that you’ve only really had a few close friends, and that occurred fairly recently. Would you share with us how you achieved and continue to work to maintain your social life?

Alec Frazier with some of his friends at the Buffalo Zoo, including from left to right: Amanda Gollhardt, Britt Cherry, Sebastiano Spurio, Megan Krug, Marcus Cherry, and Todd Vaarwerk. 

Alec has come up with a perfect description for this photo:

When I look at this photo I see people. White people, black people, fuzzy people, smooth people, gay people, straight people, men people, women people, neurotypical people, neurodiverse people, standing people, wheeled people. I see humanity. I see my friends!

Until relatively recently in my life, I did not have much of a social life. I did go to common interest groups such as comic book clubs in order to socialize with people. The massive wealth of friends I have right now started with four people. I first met them at a comic book club, Visions Comic Art Group in Buffalo, New York. By now, we’re so close that we are like siblings. Sebastiano is quirky like me, but in a different fashion. He is a genius and I love him like a brother. Megan gets business done, and is very supportive. Amanda is cute and fun-loving. Marcus is always happy and great with technology. These friends are, by now, also my family. The key was making these friends. I met them through a common interest group, as mentioned, and the next step was to actually ask them if I could hang out with them. For myself and other autistic individuals, that takes a great deal of courage. Draw from within yourself, and find that courage to ask people if you can spend time with them. You’ll be glad you did!

I spend a lot of time sharing information on disability etiquette. In my head, these things should be common sense, but not everyone realizes that what they are saying or doing is condescending or negative. One of those things is the “Isn’t he Inspiring” mindset people have when viewing an individual with a disability. While the knee jerk reaction to someone with a disability doing something the general public might see as monumental based on their perception of the person, that kind of reaction can be hurtful to the person with a disability. Can you tell my readers why it’s important for you to just be seen as “Alec” and not as an inspirational super-hero who makes huge accomplishments, despite his limitations?

I have a relatively simple answer for that. Ironically, it is that I am not “just Alec”. Everybody on the planet, myself included, is three things. We are all human. We share the wonderful, awesome experience of living in this existence. That is our primary identity. Secondly, we are all ourselves. We are all unique individuals who, although all human, have wonderful individual characteristics. Tertiary to any of that is any other identity, such as being gay, or disabled, or black, or Roman Catholic, or basically anything else. Remember this: We are human first, ourselves second, and any other identity is incidental to that.

This concludes our second installment of my guest interview with Alec. Please join us September 24, when Alec shares information on assistive technology, breaking barriers, neurodiversity and the business he has established where he utilizes his many talents and achievements to assist others.

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