Visionary comic

A man sporting Afro-style hair and wearing sunglasses, grabs the mic and stands in a relaxed posture ready to make the audience laugh. Seeing how easily he moves onstage, one can hardly notice that the stylish stand-up comedian, Gao Xiang, has any problems with vision.

Gao was diagnosed with the rare eye disease Stargardt at the age of 12. The disorder typically causes vision loss during childhood or adolescence, although in some forms this might become obvious only in adulthood.

The legal definition of blind is a visual acuity of less than 0.05. The 34-year-old Gao's visual acuity is currently 0.02. Although, everything he sees is blurry or hazy, he has been exploring more possibilities of life. Gao has successively done numerous jobs－he has worked in a factory, at a video game company and tried his hand as a marketing planner and a psychological consultant. And two years ago, he decided to become a full-time stand-up comedian.

Many of his jokes are on the difficulties faced by people with the degenerative eye disease and the visually impaired in general. He highlights everyday difficulties such as urban barrier-free facilities with designs that are unfriendly to the visually impaired and the shortage of guide dogs.

Gao has delivered more than 1,200 performances over the past two years.

Recently, his debut in the fifth season of the popular stand-up competition show Rock & Roast has made him known to a larger group of viewers. Many of the viewers comment online that his jokes prompt them to think about how to create a social environment that is more friendly toward people with sight problems.

What has been motivating Gao to be so active in the comedy industry is his eagerness to draw the public's attention to Stargardt disease.

"As it is a rare disease, medical institutions and pharma companies might lack the driving force to make great efforts to find a cure," he says. "I want to unite the patients in China and voice out loud our urgent demands."

In September 2019, he and two friends launched a public account on WeChat called Stargardt Care Center, through which they share inspiring stories of people suffering from the eye disorder, instructions for visually impaired people on how to use computers with the help of special software that can zoom into, or read out, text on the screen and translations of foreign essays that explore the possibilities of curing the disease.

"We want to gather a larger community of patients and their family members, strengthen their conviction that one day the disease can be cured," he says.

Gao has also made video blogs on how he lives his everyday life to comfort parents of young people with Stargardt disease.

"My ability to take public transport, find jobs and take good care of myself might help the parents not be unduly anxious about the future of their children," he adds.

The third season of Rock & Roast became a hit in the summer of 2020, sparking public interest in stand-up comedy. That, naturally, inspired Gao to have a go at the field, comically talking about his personal stories of the eye disorder.

After becoming a part-time comedian, Gao started to use the stage name Heideng (roughly translates as "the darkening of light") as the deterioration of his sight is like the gradual dimming of a light. He started to notice that he was losing his vision severely in 2009 when he graduated from Suzhou University of Science and Technology. Initially, he refused to accept the cruel situation. He got a job and after several months, he found that he could not handle the work like everybody else in his office because of his visual impairment.

"Back then, the first idea that came to my mind was that I should quit the job before other people noticed my sight problem," he recalls.

After that, Gao flitted from one job to another to "escape reality "until 2013, when he could use the computer more efficiently with the help of special programs and equipment that are designed to help people overcome challenges. Consequently, he got the courage to be frank about his visual impairment with his employers and colleagues and found that people didn't care about the problem as he had imagined.

His working ability also helped remove any feelings of inferiority that he had. He tried to become mentally stronger to accept reality and get his life back on track.

However, it is also a fact that patients of the rare eye disease have to keep re-adapting to lower levels of sight throughout their lifetimes.

"It's a gradual process that I might be oblivious to most of the time. But there are moments of realization when suddenly I feel pushed to the verge of a breakdown," Gao says.

He was once about to take a business trip by high-speed train, but could not see the seat numbers properly.

"Six months before that when I had boarded a train, I could see the numbers," he says.

Suddenly realizing that his vision had worsened, he felt at a loss inside the carriage. "I had to spend several months after that dragging myself out of a low mood."

At other times, the realization would come to him when he stepped out of his office building during a summertime lunch break.

"The time my eyes needed to adapt to the glaring sunlight became longer and longer, from five seconds or so to half a minute," he says.

The increasing level of severity renews a sinking feeling for him from time to time. "It's like I pick myself up after being knocked down again and again."

Gao says he wants to use his personal struggle for jokes at comedy events, yet finds it hard to make the topic funny. "Anyway, I will try."

He says he will continue to connect his comedic sets to issues that affect him while living with the eye disorder.

By now, the WeChat account that Gao and his friends run has managed to attract more than 1,000 Stargardt patients and their family members. And some NGOs also have got in touch with them to see if they could provide help to the community.

"Stand-up comedy has saved me and enabled me to meet interesting people and do what is worth doing," Gao says.

A night when he performed in a Shanghai theater, which holds around 200 people, is his most unforgettable show in the past two years. His jokes met with unexpected audience excitement. "It was difficult to see anything in the dimly lit space, but I felt exhilarated hearing the prolonged laughs and applause," he says.

All members of the audience stood up to clap for him after his performance. He couldn't clearly see that. He later learned about it from some present there.