Political Activist Tucker Cassidy

Tucker CassidySince the age of 5, Tucker Cassidy, 44, has always been interested in politics. In 2016, when the privatization of Medicaid in his home state of Iowa left him without the daily care he needed, Cassidy, a C4-5 quadriplegic, rolled into the fray and became, in his words, “the tip of the spear.”

The Tip of the Spear

Cassidy says he became a political activist to try to reverse the three biggest problems with Medicaid privatization of personal assistance in Iowa — how difficult it is to get caregivers, how difficult it is to stay independent and how difficult it is to find care agencies that accept Medicaid.

“The reason why all these things are difficult is because people who make laws aren’t listening to people like me,” says Cassidy. “They have no clue what our problems really are. And, unless we tell them, nothing is ever going to change, and things possibly are even going to get worse.”

Things did get worse. When private for-profit companies gained control of Iowa’s Medicaid system, homecare reimbursement rates were in doubt, which caused care staffing shortages and, eventually, agencies to stop providing services to Cassidy and other Medicaid clients. He was dropped by his provider in 2016, just as he developed a skin breakdown.

Tucker Cassidy.

“My agency dropped me three days before Christmas,” he says. “So I was stuck in this nursing home that’s an hour and a half away from my house while I was paying mortgage payments on a house I should be living in.”

Ultimately, he was forced to sell his house in Iowa City and move to Waterloo. “I had to allow friends to do my bowel regimen and give me showers. These are people who’d never seen me naked, and I’d never imagined in a million years they’d see me naked,” he says.

Fortunately, he found an agency in Waterloo that accepted Medicaid recipients — but by then, he had depleted his savings, cashed in his IRA and started a GoFundMe. He is thankful for the support he received from friends and family but doesn’t want anyone else to go through that.

Tucker with Amy Klobuchar

Tucker with Amy Klobuchar.

“It makes me angry to think that there are literally thousands of people out there who are not well-equipped, don’t have a safety net, don’t have the liquid assets I had at the time and don’t have the experience to navigate the system,” he says.

He realized the power of his story when it was featured in a 2018 campaign ad for Iowa gubernatorial candidate Fred Hubbell. Hubbell lost his race, but Cassidy’s ad went viral. Cassidy joined Iowa’s Democratic Party and the Disability Caucus and became an early member of a disability-focused political action committee called Accessibility For All.

He’s also one of the organizers for United Spinal’s #UpgradeMedicaid awareness campaign. Last spring, he helped organize Meet With Your Legislator Day, which saw the highest turnout of wheelchair users anyone in the Iowa state capital had seen. Attendees got a chance to talk to their representatives and tell their story. “I realized story-telling is really the way to get people to understand what’s happening,” he says, “so we have to get more people to tell their story.”

There’s never been a better time to tell those stories. As the host of the nation’s first primary, Iowa plays a critical role in the early stages of the presidential race. Most candidates vying to run for president make their first campaign stop in Iowa, which has given Cassidy the opportunity to bend the ear of some pretty big names.

Tucker with Buttigieg

Social Media Win
Connecting with a Candidate

An unexpected Facebook message from one of Pete Buttigieg’s campaign organizers led to a one-on-one phone call with the candidate himself and a chance for Cassidy to influence his disability platform.

“Buttigieg called me in between campaign stops, and we ended up talking for a half-hour. I was so nervous, even though I’d talked to him face-to-face three times before that. He was very quiet. He wanted to just listen and hear my thoughts.

I told him that infrastructure needs to include people with disabilities. If you want us to lead independent lives, you need to provide accessible transportation and curb cuts. I don’t even have sidewalks on my street, and that’s a major barrier to going to the grocery store or renting a movie.

I told him if he thinks about functional accessibility with universal design, then he could make mobility easier for everyone, not just people with disabilities. I’ve been telling this to all the candidates, but he got it right away: If you create an infrastructure that can support people with disabilities, parents with strollers and an increasingly aged population, everyone is happy. He said, ‘Yeah, that’s a good way to look at things.’ He and I also talked about the need and a few ideas for creating better access to long-term services and supports.”

Tucker with Cory Booker and Rosario Dawson.

Tucker with Cory Booker and Rosario Dawson.

Can’t Live Without:
My Google Pixel XL 2 Phone. I can literally do almost everything hands-free and it saves so much time.

Worst Attendant Story:
I had a guy who ran over his own foot with my chair. He got really angry about it and wouldn’t let it go.

Questionable Judgment:
I went to this apple orchard that had the steepest gravel driveway. When I came back to it and saw just how steep and tall it was, I was like, “That’s one of the dumbest things I’ve ever done.”

Why I Joined United Spinal:
I wanted to get more involved and be more engaged with the disability community. Being a member has allowed me to network with others with disabilities and see what we have in common.

** This post was originally published on https://www.newmobility.com/2020/03/political-activist-tucker-cassidy/

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