Carole James is approaching Parkinson’s with a similar attitude that’s gotten her through many difficult situations in life.
“You can take charge of it and work hard at what you’re able to do, not what you can’t do anymore,” James said.
James, whose accomplishments include being the first woman to serve as Leader of the Official Opposition and the first woman of Métis descent elected to the Legislative Assembly (in 2005), was diagnosed with Parkinson’s in 2020, bringing aspects of her political career to a close. But since going public with her diagnosis, she’s been kept busy, including becoming an advocate for Parkinson’s disease.
Early on, she made the decision to talk about her diagnosis in a public way to combat the shame and isolation that some people with Parkinson’s experience. She’s become actively involved on the Parkinson Wellness Projects Board, which she describes as “extraordinary.” Simultaneously, she is taking four exercise classes, including boxing, which is good for managing the symptoms.
The best part for her is the opportunity to meet others with Parkinson’s who can share experiences and humour. And she’s also learning a new pace of life.
“Being proactive and learning how to live well with Parkinson’s as long as you can is critical because it’s certainly not a diagnosis that anybody would want,” James said. “I’m learning to be more patient with myself … I’m used to going 100 miles an hour, so having to pull back on that is tough.”
Despite all these changes, it’s no surprise that James continues to lean into the values she’s held dearly throughout her career: family and making a difference through civic action.
James recently took her granddaughter on a fun girl’s trip to Paris for her graduation. She also serves on the Royal BC Museum Board, sits on crown corporation InBC Investment, and teaches not-for-profits how to pitch their proposal to government through United Way’s Public Policy Institute, and more.
Looking back, she was propelled into this lifestyle almost effortlessly, born into a family where activism and community engagement were ingrained into daily life.
“[In our house], the family was the broader community,” James said. “I was never lectured and told you had to get involved in your community, but you didn’t fit in our family if you didn’t get involved.”
During the Vietnam War years, James’ single mother was active in the peace movement and a special education teacher. They lived at James’ grandparents’ house, along with her sister, for most of her childhood. Her grandparents were also foster parents, who always had at least four other kids in the house.
It propelled James to later be a foster parent herself, mainly with adults with developmental disabilities, for almost 20 years.
“It’s an incredible experience. And those families became our families,” James said.
‘Stay true to your values’
James never set out to get involved in politics; it just happened. After becoming president of the Parents Association, a pivotal moment came when friends encouraged her to run for the school board. James, admittedly, at first said, “Not in your life, I’m not a politician.” But friends and people with common values offering support eventually convinced her. The rest, as they say, was history.
Perhaps no one was as surprised as her when she ended up running for NDP leadership in 2005 and rebuilding the party from three seats to 33 seats. The party didn’t win, but it felt like a huge win in a different kind of way, James recalls.
“It was such an extraordinary thing to see the party grow. And that’s really part of why I ran,” James said.
Back in 2003, James had admittedly “run away from politics” for a while to see whether it was really something she wanted to do. She worked in child welfare for an Indigenous organization until she started getting asked to come back to politics and run for leader.
“I was having a very hard time making a decision about the work because I loved it so much. But I think in the end, I didn’t know I’d win … But I knew I’d regret it if I hadn’t taken a chance because it was a chance to rebuild the party,” said James. “When times are challenging, that’s when you really need people to step up.”
Despite the big wins that can come in politics, there can also be equally big lows. Notably, in 2010, James faced a leadership challenge that resulted in her subsequent resignation.
“I tell people I’ve seen the good, the bad, and the ugly in politics,” James stated. “And I’ve thought a lot about how people get through those kinds of difficulties and challenges. And I think one is to stay true to your values …. And I don’t hang on to things. That’s one of the biggest skills that I’ve learned. And why I am able to do that, I don’t know. Being raised in a family that faced lots of challenges, perhaps.”
Despite that challenging time, James says she ran to rebuild the party and move things ahead for those who were struggling and that’s what she continued to focus on.
She’s particularly proud of moments that resonated with her family’s values, like when the NDP waived tuition fees for children in care who decided to pursue post-secondary education.
“Kids in care don’t have families in many cases … The system is their family. And to think of those kids going out, trying to make it and the kinds of affordability challenges that all of us face right now is so challenging. And so to be able to know that you’ve opened a door … that’s such a gift to have been involved in that decision.”
James reflects on ‘retirement’
Now in ‘retirement’ (James thinks we need a new word for it), her resilience continues while she stays engaged in organizations that matter to her while also practicing self-care. In moments for herself, she loves spending time with her husband, children and grandchildren, walking along Dallas Road and something that she thinks might surprise some people: baking.
“I joke in politics, your job is endless; it never stops. With baking, you can create something and it’s done. You have a recipe. And in most cases people are happy with it,” she said with a laugh.
She expresses that the retirement years can be a perfect time to get involved in politics or causes that matter to someone.
“It’s a perfect time to reach out to those groups and organizations and start small,” James said.
And her words of wisdom?: “You will always get back more than you give.”
Sitting in her James Bay home, which once belonged to her mother, and is close to the oceanside that she loves, James also expresses gratitude.
“I feel incredibly fortunate, but I’ve just – I’ve followed paths that have appeared in front of me. And, you know, that means taking a deep breath lots of times where you don’t think you can do it. But taking those opportunities is a gift.”
