ADA 25 and an Autistic Advocate’s Celebration of Disability!

ADA 25 and an Autistic Advocate’s Celebration of Disability!

by Alec Frazier and Autistic Reality

I am writing to report back on advocacy activities I have taken part in during the 2015 Conference of the National Council on Independent Living (NCIL), the 25th anniversary of the Americans with Disabilities Act (ADA), as well as other activities in Washington, DC.

alec yoshikoAlec Frazier with Yoshiko Dart

I met with a number of really wonderful disability rights leaders while in Washington, DC. Yoshiko Dart, the Mother of the Americans with Disabilities Act remembered me quite fondly once I jogged her memory. We had an awesome time discussing advocacy, and I gave her a copy of my book. That afternoon, our region held a meeting to discuss advocacy and lobbying during the legislative day that was forthcoming. Clifton Perez, our region’s coordinator, was made aware that I was representing Western New York Independent Living (WNYIL), as well as my firm, Autistic Reality, at the conference. That night, we had a wonderful banquet to celebrate the 25th anniversary of the Americans with Disabilities Act. Practically every disability rights leader in the nation was at that banquet, and I met some wonderful folks. I also got to thank Joyce Bender for paying for my admission to the banquet.

alec 2Alec Frazier with Joyce Bender

The next day, Tuesday, we held our March to Capitol Hill. During the March, I walked with the rest of the New York delegation. At one point, the director of the Utica network of independent living centers, RCIL, offered me a paid speaking engagement, which would also include transportation, lodging, and per diem meals. This will be the second independent living network that has engaged the services of my firm, Autistic Reality, and the third speaking engagement I have had for a network of independent living centers. At the rally, a number of powerful, influential politicians spoke to us about the need to support the disability cause. They included Steny Hoyer, Tammy Duckworth, Bernie Sanders, and many others. Many advocates were also a part of that rally, such as Bruce Darling and other members of ADAPT. The Cortland, New York independent living center, Access to Independence, sent a whole bus full of people to advocate in DC.


alec 3Alec Frazier of Autistic Reality and some of the New York NCIL delegation with Congressman Paul D. Tonko and Congresswoman Yvette Clarke at the rally at the 2015 NCIL Conference.

As for the lobbying, on Capitol Hill, our main agenda was to get the Community Integration Act (CIA) passed. This act would create a new title for the Americans with Disabilities Act which would be aimed completely at getting people out of institutionalized living settings. We were aware of the unfortunate naming choice, but it was better than some other name choices such as the DEA! The legislators I spoke to included staffers for all three of the Congressman representing areas covered by Western New York Independent Living, as well as staffers New York’s two senators. Just as a matter of record, the Congressmen are Chris Collins, Tom Reed, and Brian Higgins. The Senators are Charles Schumer and Kristin Gillibrand. I went to see the disability policy advisor for Congressman Brian Higgins, Leslie Brady, on my own. I pushed for the CIA to be passed. It should be noted that the Congressman’s office was not aware of the Community Integration Act, but they said they given his record on other similar measures, he will most likely support it. He is also very much in favor of improving Buffalo’s infrastructure, as well as employment opportunities, healthcare provision, housing opportunities, and more. In addition, I brought up the fact that many of Buffalo’s new careers and publicity opportunities are in the arts, such as filmmaking, comic book art, museums, and the promotion of such. All but one of the remaining congress-people and senators agreed completely with the CIA. One of the more rural congressmen proved harder to convince. Senator Schumer in particular agreed to promote the CIA heavily. Congresswoman Tammy Duckworth agreed to cosponsor the bill in the House of Representatives.

alec 4Alec Frazier with Mat McCullough

The next day, I attended the meetings of the United States Access Board, the federal government body that regulates accessibility issues for people with disabilities. In the morning, they were having an in-depth meeting to report findings on accessibility of rail travel, especially Amtrak. In the afternoon, they were having their general meeting. In between, I met with their finance chair, Mat McCullough. When I was an intern for the American Association of People with Disabilities (AAPD), they assigned Mat to me as a mentor. They were extremely astute, as he continues to be a mentor today. When he is not serving on the Access Board, he is the Executive Director of the Washington, DC Council on Developmental Disabilities. After I am done with my master’s program in disability studies, I wish to move to Washington, DC to embark on my career as a disability rights advocate. Therefore, I asked Mat a number of questions about employment opportunities in the District of Columbia for people who wish to pursue my career path.

alec 5Alec Frazier with the original ADA

After the meetings of the Access Board, I headed over to the National Archives and Records Administration (NARA) to see the original ADA. In addition, I went to see the Articles of Confederation, Declaration of Independence, United States Constitution, and United States Bill of Rights. I also was able to see the Equal Rights Amendment (ERA). I continue to hope for its successful passage. The next morning, I went to the Smithsonian National Museum of American History (SI NMAH) Kenneth E. Behring Center to see the ADA exhibit. The exhibit included a replica of the original ADA, as well as the pen with which the original ADA was signed. While I was at the Kenneth E. Behring Center, I learned that Omar Sharif, Jr., a very prominent Muslim American actor and grandson of the iconic Omar Sharif, Sr., had become the first gay man in history to speak out about gay rights in the Arab world, on an Egyptian television show. I posted to my business Facebook page that this was a watershed moment in game rights in the Arab world, and it is. Posts to my businesses Facebook page automatically get sent from my twitter account. I then learned that NARA had retweeted a photo I had tweeted earlier of the original ADA, and that as a result, I had over a dozen new followers on twitter. Shortly afterwards, I learned that I will have full control over the disposition of charitable contributions generated by the profits of the film “Aiden’s Walk”, for which I am the disability consultant. Having this control humbles me. I vow to find proper recipients for these donations.

alec 6Alec Frazier with a replica of the original ADA, as well as the pen with which the original ADA was signed

I then went to the legislative debriefing and closing plenary session of the NCIL conference. At the closing plenary, it was mentioned that all centers for independent living had been encouraged to send as many youths, members of the ADA Generation, to the NCIL conference as possible. The said youth were then invited up on stage, and given the opportunity to speak to the crowd. When it came my turn, I used my decades of experience as a public speaker to help close out the conference. I got at least five rounds of applause, including the time when I announced that I had been tweeting the entire conference, including every single last speaker we had had. I also introduced my travel mascot, Millard the Buffalo, whom I had been taking pictures of around Washington, DC. He was in good company, as one of the other members of the youth contingent had been bringing a dragon around wherever he had been going. Many staff members and attendees of the conference asked to have their picture taken with Millard! When I sat back down in my chair, I learned that Omar Sharif, Jr. had favorited my tweet about him. At that point, my time in Washington, DC became too positive for me to handle, and my mind exploded!

alec 7 buffloMillard the Buffalo celebrating ADA 25 with a mojito!

I am in the process of putting hundreds of photos from my time in Washington, DC on to my Flickr page and my business Facebook page. Before I conclude this blog entry, I would also like to note that I took the train to Washington, DC from Buffalo’s Exchange Street Station, and I also went back to Buffalo the same way. I love the train so much! I would also like to recognize the Honorable Ambassador Steven Pifer, his extremely intelligent wife Marilyn, their charming daughter Christine, and their adorable cat Tina for being my hosts during my time in Washington, DC. I have so many wonderful friends, business contacts, and people who fill both of those roles! I am incredibly grateful for having been in Washington, DC during the historic 25th anniversary of the Americans with Disabilities Act! It was fun, informative, and a huge boon for my future career! Thanks to everyone who helped make it possible!

Alec Frazier is the Director of Autistic Reality. He does public speaking, peer advocacy, lobbying, photography, and sells his book, Without Fear: The First Autistic Superhero, which you can find at

Out of the Shadows: Join the Conversation

By Lizz Schumer, editor of The Sun in Hamburg, NY

Stephen Hawking once said, “Sometimes I wonder if I’m as famous for my wheelchair and disabilities as I am for my discoveries.” And it’s true that Hawking’s face is as recognizable as his science; as is Einstein’s, as is Ben Franklin’s. But would anyone know Einstein without his characteristically crazy hair, or Ben without his bald head and pocket watch? We’re quick to judge people by their appearances, even if their talents overshadow them. We’re quick to dismiss those we think can’t hold talent beneath their wheelchairs, behind their speech impediment or within their non-mainstream bodies, because they don’t fit our idea of what a scientist, an artist, a dancer looks like. That’s the society we live in. That’s wrong.

As a writer, a reporter and an editor, I’ve always wanted to be judged on my work, not my persona. As a woman with an invisible disability, I have had the infinite luxury of making that choice. When I was first diagnosed with fibromyalgia, I crouched behind “normal” like a shield, hiding my disease like a brand under a bandage. But it oozed and prickled, and as time went on, I decided the opportunity for advocacy was greater than the luxury of invisibility; because choosing to remain in the shadows can feel like an arrogant cowardice, when most of us don’t have that choice.

I’m not “normal,” but neither are you. Neither is anyone I know, and that’s what this event is all about. On Friday, March 6th, 2015, the Museum of disABILITY History will host an evening reading and panel of disabled writers or writers who cover disability; to read from their work and discuss the “Crip Lit” culture, what it means to them, and how it empowers writers of difference.

On Saturday, March 7th, 2015, we will open the mic to local and regional disability writers who want to share their own writing, their own stories and their own contribution to “Crip culture.” We’re inviting writers, poets, novelists, and academics who are willing to share a little piece of themselves to show that normal is no virtue, because normal doesn’t exist. Join me to talk about where we sit, where we stand, where we exist within our own society and the larger context. Let’s start a conversation; let’s contribute to the movement.

Are you interested in participating? Send an email to, with “Writing Application [your name]” in the subject line, explaining a bit about yourself, your writing background, and why you’d like to join the conversation. Please include 2-3 writing samples, so we can get an idea of your work.

The Buffalo State Hospital Farm Colony, Wilson, New York

By Dr. James M. Boles, Senior Research Advisor

As the Museum of disABILITY History continues to research the history of Buffalo State Hospital in preparation for a new Abandoned History Series™ publication, more information has been uncovered about the Wilson Farm Colony.

Our initial research was directed to the land owned by the Dwight family in the Town of Wilson. This was based upon an inquiry from a Wilson resident and New York State reports. However, with the assistance of the Town of Wilson Historian (Ret.) Charles F. Horton and further research of New York State documents, the actual location of the Farm Colony has been found.

It was located in the Village of Wilson on Route 425, the present address is 81 Lake Street.

Wilson Farm Colony

The anticipated release date for the Museum’s Buffalo State Hospital publication is the Fall of 2014. The book will feature a unique history of the State Hospital and the Wilson Farm Colony with many rare images.

The Story behind “Raising Matty Christian”

By Christian de Rezendes, Guest Contributor


I have an old friend, and his name is Paul.  We both worked in video production separately under our own companies, and after having lost touch over several years, we were coincidentally reconnected by phone.  So we spent some time catching up.

Two weeks later, Paul calls me again.  He says he has some news that he must share with me and proceeds to tell me about a client who has hired him to transfer old VHS home movies to DVD.

Having been familiar my film work, Paul asked if I would be interested in making a film about the life of this young man.  Over the phone he kept saying, “I can’t stop watching this kid,” and I couldn’t help but hear the emotion in his voice.  Having never heard of Matty (Being from Rhode Island, I was even fuzzy on where Canton was), I expressed a desire to view some video clips whenever he had the time and if Matty’s family was open to it.  So we left it that that.

A year-and-a-half goes by.  It’s the fall of 2011, and since that last conversation, I haven’t heard from Paul at all.  That’s when out of the blue, he writes me.  He asks if I remember that call we had (as if I could forget) and wants to show me some video.  Paul comes to my home, and from the very first image I saw of, I knew I wanted to make this film.

That image became the opening shot of Raising Matty Christian.

Very soon after, Amanda and I met Allie and Jerry Christian.  We hit it off, and we got to work that November.  Having had numerous other films projects going on other burners, Raising Matty Christian was going to take some time and what a time it’s been!

The Christian family and Matty’s friends have all been warm and welcoming.  Getting this story done just right has been one of my greatest challenges as a filmmaker, but it’s Matty’s story and everyday perseverance that I will always carry with me as a result.  As one of Matty’s friends said during his interview, Matty was truly a teacher, and today I feel blessed to have had the opportunity to create this film with such a loving group of people, all of whom hold his lessons close to their hearts.

Thank you, Allie and Jerry.
Thank you, Paul.

I hope you are as moved by Raising Matty Christian as I was in the process of creating it.

— Christian de Rezendes, Director

An Epic Fight, an Epic Journey

By Lexie Avery, Contributor

Feb. 2014 blog - An Epic Fight, an Epic Journey - 1

Can you imagine being fifteen years old and never having left your small hometown? Never having experienced anything beyond the walls of comfort? For Darius Weems, this was his reality.

Diagnosed with Duchenne muscular dystrophy, a disease that will eventually lead to his early death, Darius had never left his hometown of Athens, Georgia due to the struggle it was to get around. Despite this fact, Darius was a bright and happy boy even when the reality of his situation was much more heartbreaking than even he would let onto.

Everything changed for Darius when he attended Project REACH, a camp that strives to give new experiences to children with disabilities. Darius made many new friends at the camp and sometimes felt like a counselor because people naturally gravitated toward him. Project REACH is where Darius’s journey began.

Logan Smalley, a counselor at the camp, first met Darius through Darius’s brother Mario (who was also born with Duchenne muscular dystrophy). Before Mario died, he asked Logan to look after his brother—a promise that Logan embraced. This promise changed Darius’s life forever.

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Darius dreamed of having his wheelchair refurbished by MTV’s Pimp My Ride. After reading a letter that Darius had written to the show, Logan decided that—with a core group of their friends—they would travel cross-country to Los Angeles, where the taping of Pimp My Ride occurred. This group of friends named their adventure the “Darius Goes West Project.” Because of Logan’s previous experiences at the camp, he recognized the need to document all of the amazing memories that the boys were going to encounter—especially all of Darius’s firsts.

In one of the most heartwarming documentaries I have ever seen, Darius experiences what’s outside of Athens, Georgia for the first time. He feels the ocean for the first time; he sees the bat caves at a National Park in New Mexico. He travels to the Grand Canyon and Las Vegas, enjoys a hot air balloon ride, and visits the San Diego Zoo and Sea World. Along the journey, his friends take care of him in the day-to-day manner that he requires.

Darius’s request to have his wheelchair refurbished and “pimped” was ultimately denied, but the journey was about so much more than his wheelchair. The film is dedicated to Darius’s brother Mario, who was never able to experience the things that Darius now had. More than anything, this film shows the love and compassion that Darius and his friends had for one another. It also shows the drive that they had to make a difference and spread the word about Duchenne muscular dystrophy.

All proceeds for the movie go to Charley’s Fund, a nonprofit designed to invest money in Duchenne muscular dystrophy research. The boys decided to keep the film independent and handle the distribution themselves because that way they knew that the money would go directly into research. By June 2009, the film had raised 2 million dollars for research. This total shocked the filmmakers, but it continues to grow as Darius shares his story.

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Now that Darius is older, he has a new passion—becoming a successful rapper. He knows that life for him will continue to be difficult but his zest for life is so inspiring. Besides wanting to be a rapper, Darius writes about what’s important in his life. As Darius works on his album he continues to be a spokesperson for the disease that killed his brother. His outlet appears to be through his music.

When I saw this documentary, I felt very emotional watching Darius experience things for the first time. Realizing that his brother wasn’t able to, Darius seized the day and made a nation watch and see how a young man and a group of his friends can make a difference and spread the word. Darius continues to fight for his life every single day and is even brave enough to be a research patient for a possible cure to Duchenne. I feel truly blessed to have been able to see this documentary and am so proud of the work and dedication that a group of teenagers made to a cause that mattered to their hearts.

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