In her 245-square-foot studio apartment, Whitney Clark has decorated according to feng shui principles, with a purple rug in the bathroom for prosperity, and a black welcome mat at the doorway for a successful life path. The kitchen is in the back right quadrant, where pink symbolizes love, so all of her dishes and pans, even a new waffle iron, are pink.
Clark is 33, and living alone for the first time in her life, against the odds.
That she’s living at all is against the odds. Clark has oral-facial-digital syndrome Type 1, a rare genetic disorder. Doctors told Clark’s parents their daughter would likely die as an infant. Then they said not to expect her to develop fine motor skills or social recognition skills.
“Whitney’s prognosis was none,” says her mom, Elsa Rivera. “I didn’t want her to be in the hospital so I took her home to die.”
Clark went on to earn a certificate of completion from Pacific Grove High School, and lived with Rivera until she was 22. Then she moved to a group home in Gilroy, where she spent the next 12 years, always with a roommate. She says she never slept that well, with a roommate who snored and sometimes jumped on the bed.
As Clark developed life skills, she grew more independent, taking walks on her own and going out to lunch. She expressed a desire to live as an independent adult, and last year, her care team began a discussion about whether she could move out. Social Security could cover modest rent and some hours for a caregiver to help with tasks like food prep and bathing. By January, Clark was ready to move out.
Just as she committed to the new plan for independence, the pandemic began. Because of the medical issues of some of her roommates in Gilroy, her home was locked down entirely starting on March 10 – no residents could go outside at all.
“I always missed the smell of the ocean,” Clark says. “That’s why I wanted to move back here.”
Meanwhile, she applied for apartment after apartment – and, as an unconventional applicant with zero rental history, was rejected 10 times. “The turndowns were a bummer,” she says.
Finally, after six weeks stuck inside, she found the tiny Monterey apartment that would accept her. She wrote a letter to Mangold Property Management, pleading: “I was just hoping you would give me a chance.”
She got her chance, and moved on April 30 (with a stop to see the ocean on the way, of course). But instead of beginning her new routine, moving during a pandemic meant she immediately began a 14-day period of self-isolation as a new arrival from another county. It slowed down the search for a caregiver, so her parents have been coming over to help with basic tasks and to assemble furniture.
Since she moved in, Clark has been watching Netflix and writing lots of cards (she’s already gone through all of her stamps by day 15), looking forward to being able to socialize and maybe even date, once shelter-in-place restrictions loosen.
For now, she’s been spending a lot of time with Rivera, who lives just two blocks away, and also finds herself with more free time than usual. She was laid off from her job at Cannery Row Management Company, and while she’s typically busy planning community events like the Big Sur Fashion Show, that’s been canceled this year.
And time together is something they’d both been wanting more of, especially considering Clark has advanced renal disease. (Kidney problems are a common symptom of OFD Type 1, and Clark is not a candidate for a transplant.)
Rivera sees their story as a hopeful template for other families of adults with special needs. “We get questions from other families about, will their son or daughter ever have a chance, and what does it look like?” she says. “We’re very protective of our special kids. This journey will help the confidence of other families to give it a try.”