It’s just 24 hours before the final of the TV talent contest “The King of Stand-up Comedy,” and contestant Gao Xiang is about to hit several open mic nights to test his act in front of live audiences. Playing multiple shows on one night requires darting across Shanghai to make various time slots — a challenge for anyone, let alone someone who is legally blind.

Gao, who performs under the stage name Hei Deng, meaning “dark light,” was diagnosed at age 12 with Stargardt disease, a rare genetic eye condition. In less than a decade, his vision deteriorated from an acuity of 0.3, which is moderately visually impaired, to 0.02, classified as blindness. Yet, an illness that once brought him only darkness ultimately has thrust him into the spotlight as one of China’s rising standup comedians.

Wearing his trademark afro and sunglasses, and a condescending expression, Gao has gained national attention for not only his sharp, humorous routines but also speaking candidly on stage about the inner turmoil and sense of helplessness that comes from living with severely impaired vision, and demonstrating the hope that can emerge from suffering.

Opening up

In the summer before he started middle school in Wuxi, in the eastern Jiangsu province, Gao accompanied his cousin to get an eye examination with the intention of getting a pair of glasses for nearsightedness. Instead, he was diagnosed with Stargardt disease, the symptoms of which include blind spots, blurriness, poor depth perception, and difficulty adapting to dim light. The probability of someone having the condition ranges from one in 8,000 to one in 12,000.

Gao first noticed blurring in the center of his vision, and the problem gradually spread outward. Today, only his peripheral vision on each side is unaffected; everything else is clouded by innumerable jagged black and white spots, “like the static of an old television set,” he says. To see something or someone clearly, he needs to turn his head and look from an angle.

He describes the slow decline in his eyesight as feeling like “falling into an abyss.” When he graduated from university, Gao had 0.3 vision in his left eye and 0.03 in his right. By the age of 30, this had dropped to 0.05 and 0.02, respectively. That was the last time he had his eyesight tested. “It was already rock bottom,” he says. “Doing any more measurements would be meaningless.”

Although he’s known for some time he will eventually go blind, Gao says that he was unable to accept the reality for many years. He chose to pretend everything was OK, when in fact he was having to navigate potentially hazardous situations on almost a daily basis.

When entering a large shopping mall from the subway, for example, he finds it difficult to adjust from dim to bright lighting and often fails to see glass doors. To avoid this problem, Gao used to choose a random stranger to follow into the building, although on one occasion he still ended up hitting his head hard against a closed door. After this painful incident, whenever he approached a mall entrance, he would extend an arm to scan for incoming objects. As he felt it might look odd for a person to act this way, he would shout out “Hey!” when stretching out his arm to suggest he was practicing some form of martial arts.

Gao also struggled to find settled employment. In the 10 years after graduating from the Suzhou University of Science and Technology, Gao hopped from one job to another, working as a teacher at a training institution, in video game production, and in branding. He wasn’t picky; his only requirement was that he got paid. “While other people took gap years, I took gap jobs,” he jokes. For Gao, it was a cycle of collapse, resignation, repair, job search.

He would conceal his disability from his colleagues — not to keep his job but to avoid damaging his self-esteem. However, he came to realize that, once you tell one lie, it takes countless more to cover it up. When he was teaching early years education, he was unable to see the printed lesson plans clearly, so he took photos with his phone to enlarge them, and would spend the entire night trying to memorize them, resulting in him sometimes going off script in class. In another job, when he couldn’t see the spreadsheets on his computer, he simply made up an excuse and resigned. This behavior continued until 2013, when he discovered that magnification, color inversion, and screen-reading functions on his phone could help his work.

After this, Gao slowly started opening up about his impaired vision, and in 2019 he joined fellow patients in launching a social media account called the Stargardt Disease Youth Care and Support Center to promote awareness of the condition, share news on advances in treatment at home and abroad, and build a larger support network. The account has so far amassed nearly 4,000 followers.

At the age of 32, Gao was also beginning to rethink the meaning of existence. He pondered, “What do I want to do with the rest of my life?” To some extent, his condition helped him find his mission. He feels that the moment someone is diagnosed with a rare disease, they need to be “seen” — the more attention they receive, the greater their chance of receiving treatment. So, what better way of “being seen” and raising awareness of Stargardt disease than getting in front of large audiences?

Gao had long been a fan of standup comedy, and through listening to podcasts he learned that it was becoming increasingly popular in China. “I heard on one podcast, ‘Midnightalks,’ that Shi Jiefu (one of the early standup comedy pioneers in China) was hilarious at standup, so I wanted to see it live,” he recalls. At the time, he was working in central Beijing, and he began regularly visiting small bars and theaters that held open mic nights, which comedians traditionally use to practice and refine their material. He continued the habit when he moved to Shanghai for work in 2018.

In the summer of 2020, the standup scene in China exploded when a popular TV variety show promoted the idea that “everyone can do five minutes of comedy.” Gao, then unemployed, decided to give it a try and signed up to perform at an open mic night. His opening line — “I’m blind, can you tell?” — landed like a lead balloon. He followed it up by pulling his government-issued disability certificate from his pocket and deliberately holding it upside down, saying “Sorry about that” when he pretended to notice his mistake.

Strangely, he’s considered lucky among his fellow performers. Comedians often complain how difficult it is to keep generating fresh material, but Gao’s disability has the potential to provide endless streams of content. After four years in standup, Gao says he’s yet to experience a creative bottleneck. Guide dogs, tactile walking paths, subway announcements — with a wry smile and a microphone in hand, he presents the everyday grievances of visually impaired people. If something funny happens in the morning, he will write an outline in the afternoon and try it out on stage that night, preferring an improvised, conversational style over memorized scripts.

‘Fun and profitable’

The night before his appearance in the final of “The King of Stand-up Comedy,” Gao was racing through the streets of downtown Shanghai to perform at two different open mic spots, revising his material on the go. His fellow contestants were no doubt doing the exact same thing.

To perform multiple shows in one night requires precision timing, with sometimes less than 30 minutes to travel between venues. Gao — who attempts to play three shows a night, three times a week — needs to memorize the addresses of each bar and theater, and the quickest subway route.

Tonight, Gao’s first performance is scheduled to start at 7:30 p.m. He leaves home and swipes his card to enter his local subway station at 6:57 p.m. It’s still rush hour, and pedestrians are bustling around him. Often, Gao’s speed of movement and agility make it easy to forget that he’s almost blind. He walks faster than most, going up and down stairs without needing to hold the handrail, and he only slows down slightly when turning corners, placing one hand against the wall. “The subway transfer signs in Shanghai are large and clear with vibrant colors ... and the first and last steps of the staircases are marked with yellow labels,” he says.

At 7:15 p.m., Gao arrives at the first venue and waits. At 7:44 p.m., he takes the stage, and just 15 minutes later he’s heading back to the subway station to make his next performance. As night falls, he struggles to see the path ahead clearly with only natural light, so he pulls out a flashlight from his backpack. Before entering the station, he needs to turn off the flashlight and put on his sunglasses in order for his eyes to adjust to the strong indoor lighting. Repeated practice means that Gao can now perform this sequence of actions with incredible speed.

At 8:18 p.m., Gao walks into the second theater, steps onto the stage, and begins his routine. After about 40 minutes, he’s walking back to the subway station to return home. “I’ve not worked for many years. It’s hard to find a job better than standup — it’s both fun and profitable,” he says, laughing.

Facing up to difficulties

When he was just starting out at standup, Gao followed a typical path for newcomers by signing a contract with a comedy club, with the promise of lucrative showcase performances, known in the industry as “specials.” However, he says he parted ways with the club due to “ideological differences.” Breaking such contracts can incur a high penalty, which Gao says led to one friend giving up on a career in standup. However, Gao chose to fight the club in court, spending nearly 120,000 yuan ($16,845) on legal fees to break his contract, and even ended up receiving compensation.

Since then, he’s held off signing with another production company, preferring to be “his own man.” For a long time, he says, the comedy scene felt like a utopia — a gathering of idealists who oppose conventionality. Yet, he eventually realized that standup is also a business with its own systems, rules, and ladders for progression.

Gao feels that he has redefined his relationship with his illness, and he no longer cares what other people think. He’s done with pretending everything is normal. “Why pretend? Who are you? With over 24 million people in Shanghai, who has the time to look at you? You are just being self-important. There is no need to live your life for those meaningless things,” he tells himself. By directly confronting his suffering, he’s been able to carefully and creatively curate his real-life experiences into an act that brings joy to his audience.

Over the years, Gao has considered writing material that’s not centered on his vision, fearing audiences will tire of the subject, but for now he wants to continue confronting the disease head-on. In a podcast, fellow standup Wang Shiqi, who has an artificial heart, expressed similar concerns, as his sets often focus heavily on his medical history. However, to this, the more experienced comedian Liu Yang responded, “If I had that thing, I would write two specials right away.” It was a revelation to Gao. “Right, I have this illness, I should write about it,” he recalls thinking.

Gao’s punchlines mostly used to focus on other people. Although he wanted to write about his attempts at “pretending to be normal,” he was unsure audiences would feel comfortable laughing at these heavier experiences. “Previously, when audiences were reluctant to laugh, it was because they sensed that the person speaking had not moved on and was still experiencing the pain,” he says. “If they think that the issue no longer causes you harm, they will laugh.”

Eventually, Gao began writing material about trying to pretend, addressing his deep-rooted shame about his illness. In the opening round of “The King of Stand-up Comedy,” Gao performed a bit about lingering in an elevator, waiting for someone else to press the button to his floor so he didn’t need to expose himself as a visually impaired person. However, this ended up terrifying a lone woman who simply saw a man in sunglasses enter the elevator and stand motionless. He teased that he’d “rather be seen as a pervert than a blind man.” The routine propelled him into an extremely competitive final round, in which he finished in third place.

At the first open mic night in Shanghai, the compère takes to the stage. “Let’s welcome tonight’s performer, Hei Deng,” he says, as applause and cheers reverberate around the small theater. Gao feels his way out of the pitch-black backstage area and picks up the microphone. Once under the bright spotlight, everything is laid bare. “The most important thing for me is to keep performing, keep being on stage, and keep being seen,” he says.

Reported by Li Ang and Li Chuyue.

A version of this article originally appeared in Shanghai Observer. It has been translated and edited for brevity and clarity, and is republished here with permission.

Translator: Vincent Chow; editors: Wang Juyi and Hao Qibao.

(Header image: Visuals from @爱奇艺喜剧之王单口季 and VCG, reedited by Sixth Tone)