Disabled Elgin man wants to fight for rights of personal assistants

Phil Mungai calls his desk his "command center," strategically positioned by a large bay window in the living room with an expansive view of his quiet Elgin street.

The 27-year-old has had the busiest six months of his life, what with being appointed to the city's human relations commission, serving as an intern for three Democratic political candidates and starting a new group called the Coalition of Abled and Disabled Individuals. He's also mulling a run for city council in April 2019.

Born three months premature, Mungai has spastic quadriplegia, a type of cerebral palsy affecting fine motor skills. He uses his index finger and dictation software to type.

He keeps a water bottle with a big straw on his desk, which sports a Canadian flag. "I'm a Canada-phile," he explains. "I really like it. It's more of a socially progressive country."

After earning a history degree from the University of Illinois at Urbana-Champaign, Mungai looked for a job, but the most he could get was a three-month gig in tech support for the U.S. Census Bureau, he said. He's now shifted his focus to activism and politics.

"The No. 1 thing is to make sure we are fighting for the best policies possible for people with disabilities," he said.

Getting started

The Coalition of Abled and Disabled Individuals has three active members - Mungai, his father, Ed, and a friend - and a Facebook group with more than 660 members. The group has applied for state nonprofit status and plans to do the same for federal 501(c)3 status before launching formal meetings and crafting a plan of action, he said.

The group's goal is to improve health care, education and social services policies for people with disabilities, and fight for the rights of their personal assistants, Mungai said.

There needs to be more emphasis on academics and less on vocational skills for people in special education, Mungai said. He was fully mainstreamed starting in kindergarten, but others with more severe cerebral palsy - such as kids who were blind or couldn't talk - didn't get as much academic stimulation as they deserved, he said.

At-home personal assistants had their overtime hours capped under Gov. Bruce Rauner's administration, which means many disabled people have to find multiple assistants, he said.

Mungai has two state-certified assistants, one of them his father, with whom he lives. His mother died of cancer in 2016.

"Every time you see a photo of a disabled person at a protest or being arrested, think about what it took to get them there - get them up, feed them breakfast and all that," Mungai said. "Without personal assistants, disabled people don't have any power. And they don't get any credit at all."

'That awakened me'

Mungai said his desire to be active was sparked by a protest last summer in Washington, D.C., by the national group ADAPT against the repeal of the Affordable Care Act, when some people were arrested after being removed from their wheelchairs.

"That awakened me. I said, 'I can't just watch. I have to get involved,'" he said.

He considered starting a suburban chapter of ADAPT, but the group has a great focus on civil disobedience, while he wants to focus more on public education and outreach to policymakers, he said.

Mike Ervin, one of the founders of Chicago ADAPT, met informally with Mungai a few months ago when the Elgin man was formulating his plan. "There is a ton of work to be done," Ervin said. "And the suburbs are largely unrepresented, in a certain way, in terms of grass-roots advocacy. So if he can pull it off, that would be a great thing."

Mungai has a unique way of communicating with people, said Karina Villa, a Democrat from West Chicago running for state representative in the 49th District. As an intern, he's been instrumental in crafting her campaign's messaging and newsletter, she said.

"He's committed and intelligent and brings just a whole different level of thought to people when they are having discussions," she said. "He's just a very well-versed individual who knows a lot about many topics. And he's a champion for people who typically don't have a voice."

Mungai said his disability gives him an up-close perspective on people.

"It causes me to live at a slower pace and understand people at a more personal level, because you have to be able to trust a very small group of people with your most vulnerable moments - getting dressed, taking showers ..." he said. "It also helps in being able to negotiate with people, understand they need what you need, and getting to an understanding, agreement, consensus or compromise. I think that could translate to politics well."