An interview with Maryum “May May” Ali, Public Speaker & Social Worker on Advocacy, September 12, 2023 by George Ackerman, Ph.D., J.D.
Please tell me a little about your background.
I was in the entertainment business when I was younger. I worked for over a decade as a stand-up comedienne, and I was also in the music business as a rap artist for a few years. My goal was to be a positive role model for youth as an artist. I was drawn to early hip-hop music for its messages about empowerment, social justice and upliftment. In 1992, when my album, “The Introduction” was released, rap music was becoming more about violence and sexual exploitation. As spiritual women, I decided to leave the entertainment business. Since I wanted to help youth, I knew the best place for me was to work in underserved communities as a Social Worker.
When Maryum Ali was a child, her father Muhammad Ali would often ask her, “What is your purpose?” Maryum would give the same response, “I want to help people.” Maryum’s efforts to fulfil her purpose has manifested in a myriad of ways throughout her life.
For fifteen years, Maryum has worked with youth and families in the field of juvenile delinquency prevention and youth development in various capacities; as a Case Manager and Program Director for non-profit organizations and as Regional Manager for the Mayor’s Office of Gang Reduction & Youth Development in Los Angeles. In 2016, the A&E Network heard about her work in underserved communities and invited her to participate in their ground-breaking docuseries, “60 Days In,” where she spent time in a real jail as an undercover inmate in order to make recommendations for jail reform.
Maryum is currently a Public Speaker. Most of her keynote speeches are for social and human services organizations. She has also given presentations about her father’s journey with Parkinson’s and the role of family. Other speech and presentation topics can be found on her website at www.MaryumAli.com.
In 2024, the 20th anniversary edition of her children’s book, I Shook Up the World: The Incredible Life of Muhammad Ali, will be released by Simon & Schuster.
Can you tell me more about your advocacy in the Parkinson’s community?
For almost twenty years, I was a spokesperson for Team Parkinson, which used to be an official charity organization for the Los Angeles Marathon. Team Parkinson was formed in 2001 and ended about two years ago. They raised over 3 million dollars for Parkinson’s disease research. I was also a spokesperson for twenty years for the annual Parkinson’s Unity Walk that is held every April in New York’s Center Park. The Parkinson Alliance started this grassroots event in 2001 and has raised a total of 34 million dollars for PD research. Since the Parkinson Alliance closed its doors on April 30, 2023 due to the impact of the pandemic and an unstable economy, the ownership of the Unity Walk was transferred to The Michael J Fox Foundation last year.
I have also given presentations about my father’s Parkinson’s journey.
What inspired you to give presentations about your father’s PD journey?
I think it’s important for people to know that someone like Muhammad Ali had similar experiences. He was misdiagnosed for a least seven years. Initially, he felt isolated because he didn’t really understand PD and didn’t know what to expect. Little was known about Parkinson’s when he first started having symptoms. Our entire family and his friends were in the dark as well. The good thing about my father is that he has always been an optimistic person, so he tried to maintain a positive attitude. He did have some challenges, but when he finally became a part of a Parkinson’s community and when my family began educating ourselves more about PD, my father’s quality of life improved.
What was your favorite memory with your father?
My favorite memories are praying with my father and studying Islam with him. Our spiritual conversations were lessons that has helped me more than anything else. I also loved all of the times I’ve witnessed his kindness and generosity to people from different walk of life. He would treat a person on the street just as good as a CEO of a corporation. My favorite memories that were more light-hearted was when he would do his pranks around the house. He had the patience to wait for twenty minutes in a dark hallway, wearing a monster mask, just to scare the crap out of us. It was hilarious. He was a lot of fun. Since he did so many pranks, I didn’t believe him when he told me that the actor, Clint Eastwood, would be at his house one morning. When I came downstairs, I was shocked to see Clint Eastwood sitting with him. My father just cracked up laughing because my hair was a mess and I was wearing my pajamas.
What effect can your advocacy have on an individual with Parkinson’s?
I hope that being a spokesperson for the organizations I have worked with gave them more public visibility for fundraising as well as an increased awareness about various issues regarding PD. I also hope that sharing my father’s and family’s experience can inspired people as well.
One specific story I remember was when my father lit the torch at the Opening Ceremonies of the 1996 Olympics. His hands were tremoring on televised broadcast around the world. It was a pivotal moment of him because he realized that people still loved and respected him, even though he had Parkinson’s disease. My father was the first public figure that made people look into what Parkinson’s is.
I remember a woman walked up to me and said that seeing Muhammad Ali light the Olympic torch gave her confidence to get out in public more often. She said to me, “Now when anyone stares at my symptoms, I just tell them what PD is and that I have the same thing Muhammad Ali has.”
How can others also become advocates for awareness?
There are many forms of advocacy. It depends on what you are comfortable doing. You can:
- Educate family and friends about PD to improve the support system around a loved one with PD.
- Help someone with PD who is having difficulty getting Parkinson’s resources.
- Donate to PD organizations.
- Get involved with working to support policy about PD.
- Volunteer for PD organizations or events.
- Sing-up and participate in Parkinson’s studies and trials.
- Participate in fundraising events.
- Educate people about PD with various types of media.
- Ask repudiable organizations on other ways to be an advocate.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
There are a few things I think are very important. Learn as much as you can about PD and educate those around you. Understand that educating yourself is an ongoing process. Try your best to enjoy things you love that you are still able to do. Become a part of a Parkinson’s community that suits you best. To the family members and friends of people with PD; try your best to keep them in the loop of events and conversations. Even if they are not very verbal or mobile, do not ignore them. They need love, attention, and supportive relationships just as much or even more than anyone else. If you think you or someone you know has PD, it is very important to see a Neurologist who is also a Movement Disorder specialist who has a lot of experience with PD patients.