This story is part of a series to raise the visibility of people living with a disability at UCSF and to share resources available at UCSF to serve and support this community. Join us as we share their stories.
Angela Woon was known as a clumsy person most of her life.
The native of Malaysia and eventual Bay Area resident would bump into furniture and fire hydrants, and trip over curbs without warning. It happened often enough her friends jokingly referred to it as “pulling an Angela.” But when Woon was diagnosed with retinitis pigmentosa (RP) in early 2019, there wasn’t much to laugh about.
RP, a group of inherited diseases causing retinal degeneration and a decline in vision that affects one in 4,000 in the United States, changed Woon’s life. But despite encountering challenges, she found ways to move forward, adapt and thrive.
Woon’s introduction to the U.S. was a cold one, literally. When she came to America for her undergraduate studies at Iowa State University, it was the middle of January. The weather was quite different from the 90-degree temperatures and humidity she was used to in Malaysia. “It was the blizzard of the century at that time,” she recalled.
Despite the chilly weather, Woon soon learned to love the Midwest and made many lifelong friends. After graduation, Woon found herself on a plane bound for California. Once here, she never left the West Coast, now splitting her time between Washington state and the Bay Area. Woon has always had a love for working in the nonprofit and health care sector – a path that led her to UCSF.
“It’s all my mom’s fault,” said Woon, now an IT communications analyst with the IT Operating Model Program. “She always told my siblings and me, if you think you’re poor, there’s always someone poorer than you. I learned that you should always be considerate, be grateful, and care for others.” Ironically, Woon used to volunteer to read to the blind in college and in the Bay Area, and even signed up to be a running guide prior to her diagnosis.
She, however, never expected to be the one receiving help.
A surprise diagnosis
That changed during a regular eye exam in 2016 when a doctor flagged a potential issue with Woon’s vision. “It was a test where you had to click a button every time you saw a pointed light, but I guess I wasn’t clicking enough,” she said of the routine test. “He was puzzled as to why I was missing so many, but it was because I didn’t see any lights in my peripheral vision.”
After being referred to a specialist, doctors couldn’t identify any major issues with Woon’s eyesight, so she went back to her normal life assuming her health and vision were just fine. “Nothing was amiss,” she said. “I was still pretty active, still living life with no clue anything different was happening.”
But it wasn’t long before Woon was back in a doctor’s office again, this time learning of her degenerative retinal condition just weeks after running the Chicago Marathon. For Woon, the first signs of the condition are tunnel vision and deteriorating night vision. “Doctors weren’t helpful in providing any resources,” said Woon. “They simply told me I was slowly going blind, there’s no cure or treatment, live your life, and see you next year.”
The diagnosis was understandably devastating. As anyone would do, Woon Googled to find out more about the disease and learned about services and support available in the community.
Dealing with a range of emotions, Woon would often wake up in the morning wondering if she’d still be able to see when she opened her eyes. Beyond that, her life’s trajectory was in doubt in her mind. “You just start thinking about the things you currently do, things you planned to do, and you wonder if you can still do them next month, next year, several years from now,” Woon said. “I run, I travel, I write and do graphic design. I need my eyes.”
What a cane means
Woon came to UCSF in May 2021.
Because she worked remotely, she didn’t officially meet many of her colleagues until an in-person event the following year at Koret Quad on UCSF’s Mission Bay campus. Then periodically using a cane, Woon wasn’t sure how they’d react upon meeting her.
“Zoom is an equalizer for a disabled person like me, I don’t think any of my coworkers except for my manager knew I was visually impaired until I showed up that day with my cane. There were a few awkward moments like missed handshakes and people not understanding what a cane means,” she said. “I was hesitant at first, but I’m glad I went. I was afraid they would treat me differently, but they didn’t. I had people who were wondering what the cane was about.”
That led to several teaching moments with her colleagues, Woon said. “I was also grateful that prior to the event, a survey was sent out to ask if anyone needed accommodations. I didn’t need them, but I really appreciate that they were inclusive, and I think more of this needs to be replicated across UCSF.”
I may be disabled but with the right tools and accommodations, I can do what any sighted person can do, nothing is impossible.”
Woon thinks there is a lot of room for improvement across society when it comes to how people with disabilities are treated. “I think the world still has a lot of catching up to do in terms of attitude,” she said. “Just because I don’t fit the bill or criteria of what society thinks a blind or visually impaired person looks like doesn’t mean I am lying about my disability or that I don’t need a cane. There are invisible disabilities.”
People also need to stop thinking that just because someone is disabled, life stops there or that they are helpless, according to Woon. “I may be disabled but with the right tools and accommodations, I can do what any sighted person can do, nothing is impossible,” she said.
Even as her vision has continued to worsen, Woon doesn’t let RP slow her down.
She ran the New York City Marathon in 2022, has plans for more marathons, learned Braille and is currently learning American Sign Language, among other activities. Woon also writes satire for a disability website to help educate and bring awareness to common misconceptions about disabilities through humor.
“At the time, I felt like my whole world was crumbling to be given a diagnosis that has no cure,” Woon said. “Even now, I get depressed sometimes when I think about my eyesight but I don’t let myself stay there too long. Instead, it’s like a competition – I try to do things to get ahead of RP. That is the saving grace. I’m trying to get ahead of it. I’m going to outdo RP and win this race.”
As an introverted and shy person, advocating for herself didn’t come naturally for Woon.
After being surrounded by the disabled community, she felt compelled to change that – not only for herself, but for others like her. Woon is a DEI Champion and was recently nominated and elected to serve as Health IT Anti-Racist Committee web admin co-chair. She also accepted an invitation to join the UCSF Committee on Disability Inclusion.
“This is out of my comfort zone. I can’t say I have much knowledge in DEI work,” Woon said. “The only experience I have is firsthand and I know as a disabled person I want to be included. I’m going to try and be an advocate for change. I want that for every disabled person, for everyone.”
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