Get Inspired by CRUTCH

Kids need to be empowered when faced with life’s challenges. They need to feel validated, understood and have a sense of control over their situation.

They need to be inspired.

Bill Shannon is doing just that.

Photo Credit: Mireya Acierto
Photo Credit: Mireya Acierto

Bill was diagnosed with Legg-Calve Perthes disease when he was five years old and depends on crutches to ambulate. He is an artist and dancer that focuses on his abilities to communicate with the world.

CrutchCollage

Bill is featured in a documentary, CRUTCH by, Sachi Cunningham and Chandler Evans.

CRUTCH chronicles the life of Bill Shannon, an internationally renowned artist, break dancer and skate punk, who wields his crutches as tools of expression and weapons of provocation.

A decade of exclusive access, plus a lifetime of archival footage, depict Shannon from his early years as a disabled child who refused to sit idle and watch able-bodied kids play, to his rise as an award-winning dancer and cutting-edge performance artist whose work finds outlet at prestigious venues worldwide, including Cirque du Soleil, the Sydney Opera House, the Tate Modern, and the Chicago MOCA.

CRUTCH examines Shannon’s controversial street performances as he exposes the hidden world of prejudices encountered by disabled people on a daily basis. It questions his methods as he exploits strangers’ good Samaritan impulses to make his point—and his art, yet marvels at his ability to offer solutions and empowerment to those facing similar challenges. The film explores how a degenerative condition and chronic physical pain have fueled both the beauty of his movements and his in-your-face attitude.

From childhood “cripple” to international provocateur, CRUTCH is an emotional journey of an artist’s struggle to be understood.

CRUTCH has created a Kickstarter site to help raise funds for the post production journey, so it can be featured at elite film festivals worldwide. They are half way to their goal!

Related Articles

Resource of a Rare Childhood Disease

Giving More Than Hugs

The Creation of Hope Has Fun

My Connection to Rare Disease Day

rdd_logo_large

Today is Rare Disease Day. It may just be another day for you, but today is a very special day for my family.

My mom was diagnosed with a rare disease in 1987. It’s called Behcet’s Disease. I was only seven years old when I was told about her diagnosis. I can still put myself back on the staircase sitting next to my nine-year old brother when given the news. I can remember those feelings of fear, uncertainty, and sadness. It was difficult to comprehend at that age because she looked fine to me. I didn’t notice anything different.

Behcet’s Disease is an autoimmune disease. It effects the blood vessels of the whole body the-american-behcet-s-disease-associationwhich then affects the central nervous system, gastrointestinal and mucus membranes. It causes incredible pain, ulcerations, severe migraines and skin lesions.

When a person with Bechet’s is in a flare up, their immune system is in overdrive. The only thing that will help calm it down is being on an immunosuppressive drug. If you know anything about medicine, you know that your body can’t stay on steroids. It has horrific side effects and is intended for short-term use only.

There is no cure but there are several different treatments that patients can try. Every person is an individual and their bodies react different to both the disease and the medicine.

Unfortunately, my mom really hasn’t had a lot of luck with treatments. She has had to change the way she lives to decrease the amount of stress (which can easily bring on a flare up). She had to stop working years ago, find support in family and friends and basically learn to tolerate pain. She is a guinea pig when it comes to trying a new medication. She has tried anything and everything that is approved from the FDA. The only thing that she refuses to take is pain medication, such as a narcotic. She will just take over the counter ibuprofen or Tylenol.

IMG_9914

My mom isn’t a complainer, in fact you wouldn’t even think anything was wrong with her because she doesn’t talk about it. She is one of the most selfless people I have ever met. She goes on with her life putting everyone before herself. I think that this may be a coping mechanism. When she is surrounded by her loving family, friends and furry babies she is able to forget the pain. She has a great sense of humor, adores her grandkids and loves to travel. She is a true inspiration. She doesn’t let the disease stop her from living her life. It throws a wrench in it, but she stays optimistic and just keeps moving forward. I am so proud of her and love her so much!

The Official Rare Disease Day 2015 Video

Related Articles

How a Rare Disease Changed My Life