China Daily Global Edition (USA)
Struggles illuminated
Festival aims to raise awareness of people living with rare diseases
Adiverse ensemble of different ages, genders and degrees of physical mobility tell similar stories through the play, Rare Hug. “I look different from everyone else. I sit in a wheelchair, measuring the floor with my hands. But I’m just like everyone else. I need to go to work in order to do what I like,” a member of the group says onstage, during a recent performance of the stage production that seeks to highlight the lives of people with rare diseases.
“While I look just like everyone else, I am a myasthenia gravis patient,” says another member.
The neuromuscular disease leads to muscle weakness. The symptoms include drooping eyelids, a tendency to fall, and a lack of balance and physical strength.
“It can be life-threatening,” the person adds.
Each story is about a real experience. The play’s performers are either patients with rare diseases or are from families in which other members have them.
Rare Hug reveals such struggles. It features performers from the Illness Challenge Foundation, a Chinese nonprofit in Beijing.
The play was staged as part of the 2019 Luminous Festival held in Beijing from Oct 13 to 20, as the first edition of an annual event to promote inclusive arts.
“At this year’s Rare Disease Day event (in February), we talked about creating a play to express ourselves through art so that the public can truly feel that patients with rare diseases actually live among them and to help them understand our life experiences through stories,” says Pan Longfei, one of the actors and a patient with Kallmann syndrome, a condition characterized by delayed or absent puberty and an impaired sense of smell.
A dozen patients with rare diseases volunteered to perform in the play. Directors Chen Meiping and Liang Wanyun helped turn their life experiences into a stage production.
Another performance at the Beijing festival related to the lives of people with rare diseases or disabilities was presented by Dancing Wheels, a dance company in the United States that has facilitated collaborations between dancers with and without disabilities since its founding in 1980.
The company’s founder and president, Mary Verdi-Fletcher, is the first professional dancer who uses a wheelchair in the US. She was born with spina bifida, a type of neuraltube defect. Doctors said she could not even grow up, let alone become a dancer. However, her family refused to give up and brought her up with faith and perseverance.
“My mother was a dancer. My father was a musician. So, I always loved the idea of dancing. I worked with a non-disabled partner, and we started to dance,” Verdi-Fletcher says.
Her appearance on Dance Fever, a US music-variety show, in 1980, won her a standing ovation and made history. “Before you know it, we had audiences that wanted to come and see, and then we built a company from there.”
She is working to raise public awareness through performances and education, including dancing in Beijing’s Luminous Festival.
“We love to be able to go into other countries and be able to not only dance but to give the example about what’s possible. So, I think that it opens people’s minds, broadens their vision of accessibility, of dance, of inclusion,” she adds.
The festival also hosted the China-UK Disability Arts Forum, an exhibition by students with disabilities, and art-therapy workshops.
Founder and curator of the Beijing festival, Ge Huichao, started out as a modern-dance producer. During a trip to New York in 2016, she was exposed to performances by dancers with disabilities and a contact-improvisation dance session. These encounters inspired her to organize dance jams and workshops open to all, which led to the Beijing festival.
“The scope of inclusiveness is not limited to disability, but it also includes age, gender and social minorities,” Ge says. “This platform will provide effective channels and a real drive for the integration and equal artistic expression of different groups.”
Upholding the concept of symbiosis, the festival’s forums and workshops take in almost the same number of participants with and without disabilities, Ge says.
“Inclusion and communication are very important.”
The China-UK Disability Arts Forum, a major section of the festival, is supported by the British Council, with “inclusion” as a focus area for its activities this year, as it marks the 40th anniversary of its presence in China. Four British and four Chinese experts spoke at the forum, and art and charity organizations were invited to exchange ideas on inclusive arts and disability awareness.
“We hope to invite troupes from more countries to perform in next year’s festival. We devoted a lot of time to hosting this year’s festival, and hopefully we will have more funding and possibilities next year,” Ge says.
This platform will provide effective channels and a real drive for integration and equal artistic expression of different groups.” Ge Huichao, founder and curator of the Beijing festival