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 schumeea@gmail.com, 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

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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.

Complementary and Holistic Therapies for People with Cerebral Palsy

By Virginia Cunningham, Guest Contributor

Did you know that approximately 800,000 people in the United States are affected by cerebral palsy? Despite this, we know the potential of the brain is absolutely remarkable and there are many ways to help people with cerebral palsy surpass their current limitations. The sister of one of my friends has cerebral palsy and is the most cheerful person I have ever met, despite needing a walker. She has a great job teaching, is married to a devoted husband, and has three beautiful children.

She has, without a doubt, been an amazing inspiration for me. And ever since I met her, I’ve spent a good deal of time looking into alternative therapies for those with cerebral palsy–in the hope of helping parents with a child who has the same condition. Please keep in mind that, while many of these practices have not been fully tested or approved by the medical community, some have found these alternative therapies to be effective. I myself have seen children thrive as a result of practicing several of these. In addition to the actual benefits, I am a firm believer that engaging your children (disabled or otherwise) and spending time with them at these exercises is the true therapy. Your children will thrive because of your love and attention. Definitely consult your physician as well as specialists–they can help you set the most effective routine for your child. However, take advantage of the healing benefits of the therapies below.

Bring out the kick boards and hand paddles

When your child is old enough, get them swimming! The earlier you start, the better. I’ve taught swimming lessons and coached swim teams on-and-off for ten years, and some of my best students have been ones with physical disabilities like cerebral palsy.

Image Courtesy of Pixabay.

Image Courtesy of Pixabay.

Swimming does wonders for their muscles since they aren’t fighting gravity as much, and it is a life skill that they will be able to use forever. It also tends to put the child on an even playing field with their peers and it’s fun!

Let’s get galloping (though maybe not so literally)

In addition, try horseback riding (known as equine-assisted therapy, or hippotherapy, in the medical community). It stretches and strengthens muscles that are often forgotten, leading to better posture and function. Controlled trials show significant improvements in walking, running, and jumping–with improvements lasting up to sixteen weeks.

Image courtesy of Pixabay.

Image courtesy of Pixabay.

The bond created between a horse and their rider is magical beyond words and I really can’t describe how much horseback riding could help! It’d also be a good hobby for the both of you in the future.

Balancing the body in all ways

Additional body movement therapies promote emotional, mental, physical and spiritual balance and well-being. There is a broad range of Eastern and Western movement methods worth looking into, including Feldenkrais Method, Alexander Technique, Rolfing Structural Integration, Pilates and Trager Psychophysical Integration.

Conductive education

Another type of therapy that may be of interest is called conductive education, which is a program aimed at avoiding “learned helplessness” and promoting independent functioning through repetition, verbalization and discouragement of adaptive equipment.

After World War II, a Hungarian doctor by the name of Adres Peto strongly believed that just because a child was born with brain damage, it didn’t mean they were incapable of learning skills that could lead to an independent life. The Peto Institute was formed almost sixty years ago, where full-time teachers (conductors) show children how to move and have them repeat the routines until exhaustion. While it may sound a bit offsetting to some, the idea behind it is that if the brain is forced to try, it will find a way to connect mind and muscle.

Hyperbaric Oxygen therapy

Although it is not a widely agreed upon treatment for traumatic brain injury, there are a variety of studies currently undergoing recruitment and trials for Hyperbaric Oxygen. That being said, the theory behind how it works is that higher oxygen concentration enhances aerobic metabolic activity of CNS tissue, limiting the damaging effect of anaerobic metabolites and helping damaged mitochondria get their act together a little faster.

There’s a book called Hyperbaric Oxygen for Neurological Disorders by Dr. Zhang that would be a good start if you are interested in learning more. Dr. Paul Harch (who is a big proponent) also writes literature, but I’d take it with a healthy dose of skepticism. There are also a couple overviews that have been written for the NIH and UHMS (Undersea and Hyperbaric Medical Society).

If you have a child or family member with cerebral palsy, challenge them to try new things! Embrace the things they love and never, ever coddle or give up on them. Disability does not equate free pass, and remember, the small things are just as important as the big things. Tell them that life may be hard but to embrace it, and work on life experience and their education. Nothing is impossible unless you want it to be!


Virginia Cunningham is a freelance writer and holistic enthusiast living in the Los Angeles area. As a mother of a special needs child, she often shares her personal experiences with other parents who have special needs children, and encourages them to try consider these therapies. You can learn more about her journey by visiting PrayForNathan.org.

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