The phrase “advocating for others” may bring specific images to mind, such as a formal role as a power of attorney or professions such as community health workers and caretakers. While these roles are essential, they do not encompass the full scope of what advocating for others can look like, which can include:
- Helping a friend prepare for their next doctor’s appointment
- Helping someone navigate questions about insurance, employment, or other complex topics
- Helping someone share their story with others
- Acting on behalf of others to ask for tools and resources they need to live well, such as a translator, transportation, or financial support
The term “health navigator” often refers to a person actively championing wellness for others and helping individuals overcome barriers to quality care in health systems. Our Ambassadors regularly act as health navigators for their communities by helping individuals understand the resources and tools available for people living with Parkinson’s and planning the best path to living well. So, we turned to them to learn more about advocating for others and how they got started as health and Parkinson’s advocates.
How did you start advocating for others?
"Advocating for others started with my desire for a purpose after retiring due to Parkinson's. At the urging of a former boss, I became involved with the Parkinson's Association of San Diego. I attended a Michael J. Fox Foundation symposium and was most inspired by a younger, enthusiastic group who spoke about exercise and living life well - the Davis Phinney Foundation team! I realized then and there that my purpose was to help others navigate their journey with Parkinson's by providing support and medically evidenced information presented in an understandable way." ~ Marty Acevedo
"I started advocating because I could. I could see there was a need for someone who could speak knowledgeably and professionally about Parkinson's, so I decided, why not me? Many of the other people I know in Juneau, AK with Parkinson's, could not handle this responsibility, so I jumped in knowing I could speak for all of us." ~ Kerry Howard
"This happened organically. I never really planned it, but as I continued to learn more, it was quickly apparent that I was acquiring the information needed by others. As time went on, I gradually fell into this role." ~ Stacey Macaluso
"It all started for me when I went to my first support group meeting in Pueblo, CO. I got into an argument with the janitor because he set up all the chairs in rows, with their backs to each other. I said no, no, NO, put the chairs in a circle facing each other so we can each see everyone. That's what started it all." ~ Neal Weierbach
"I started advocating for others at a young age when bullying was still tolerated in grade school. I used to stand up to the bullies to protect the underdog. Now in my middle age, I continue to advocate for others by providing resources and professional wellness classes and information to those with disabilities and abilities." ~ Brett Miller
"I decided to advocate for others because I have been doing it since I was a little girl. I have always taken it upon myself to be a champion for those who could not speak for themselves or were afraid to speak for themselves." ~ Gretchen White
"I don't remember a specific event that caused me to 'decide' to be an advocate. For me, advocating seems to be an innate trait. I've remembered wanting to help people all my life, even as a young child, and this trait has remained consistently deep." ~ Carolyn Utesch
"When I was first diagnosed with Parkinson's, I was able to join a program between AbbVie Pharmaceutical and the Michael J Fox Foundation. I was assigned a Parkinson's advocate who would help me in my initial Parkinson's journey. To say she helped me is an understatement. If it were not for her, I'd be a different person today. At one point after this program ended, she reached out to me and asked if I would offer her support as she was doing a presentation locally. I told her I would be happy to, and at that meeting, she was presenting the program that I had completed, and it appeared that she wasn't getting much interest from the crowd. So I stood up and addressed the crowd, telling them how this woman saved my life. The thought came to me that she was my Sherpa. I could not get to the top of the mountain because the weight of Parkinson's was holding me down. Like a Sherpa, she carried my weight, and I was able to reach the mountain top. At that point, I wanted to start carrying someone's weight to help them get to the mountain top." ~ Tom Cosentino
What does advocating for others look like?
"Phone calls, zoom calls, meeting one-on-one for coffee or a meal. Teaching support groups, medical students, nursing students. Advocacy in Congress and locally. Acting as a consumer reviewer on the Department of Defense research panel for Parkinson's. Teaching Good Start Program, initiating local mentor program. Paying it forward. " ~ Marty Acevedo
"For me advocating ranges from speaking to individuals to speaking to groups, including policy members (e.g., Congressional delegations)." ~ Kerry Howard
"It is a full-time job, helping people navigate their Parkinson's journey .... there are just too many people with Parkinson's, not enough doctors and providers, therapists, etc. Not enough help out there." ~ Stacey Macaluso
"LISTENING is the most important aspect of advocating for others, being non-judgmental, learning and sharing are important as well." ~ Neal Weierbach
"Advocating for me could be sharing valuable resources, speaking with physicians, speaking to the public, treating people with my physical therapy techniques, and educating people on how to help themselves and be of service to others. This includes families and people who may be struggling." ~ Brett Miller
"Advocating for me looks like one-to-one conversations, so the individuals feel comfortable discussing any issues. Advocating can also be presenting to a group of individuals with the same health issues as your own or sharing your journey with others who may be on a health journey of their own." ~ Gretchen White
"For me, the work of advocacy is constant and powerful, like waves moving across the ocean. The need for advocacy is continual. Sometimes advocating is spending casual time together to share gardening tips, favorite books, cooking techniques, or sports scores. At other times, advocacy is a heavy-duty commitment to defend someone's cause: speaking up for unheard wishes, proposing avenues to maintain respect, or searching for opportunities for a better quality of life. At other times, advocacy can take the role of guiding someone to appropriate services and resources." ~ Carolyn Utesch
"For me, advocating is listening to what people have to say and then trying to offer some advice based on my life experiences and the experiences of others with Parkinson's. I try to be active in the local Parkinson's community and offer my experience and the resources of the Davis Phinney Foundation. I never try to preach to anyone but have an open conversation and let them know that I understand what they're going through and I can help. I have had the pleasure of speaking to individuals, married and unmarried couples, and anybody who gives me five minutes to talk." ~ Tom Cosentino
What is the biggest challenge?
"(The) biggest challenge is the utter lack of qualified mental health professionals with any knowledge of Parkinson's." ~ Marty Acevedo
"Putting in the time and effort to advocate while also putting in the time and effort to help myself. Parkinson's is stressful to live with, which is sometimes aggravated by advocating on top of living with symptoms and challenges." ~ Kerry Howard
"Getting the word out there that there are people who can help. Managing Parkinson's becomes a full-time job. Many become beaten down by it. It takes a motivating coach and a good support system to keep someone with Parkinson's engaged and on track." ~ Stacey Macaluso
"Getting people to open up and share for the first time. Then realizing that, despite your many physical and spiritual differences, you do have a lot in common and that you both can benefit from sharing." ~ Neal Weierbach
"Some of the challenges of advocating are seeing that some people are not ready from an acceptance perspective, whether it be needing to make a lifestyle change or the newly diagnosed. Unfortunately, some of the other challenges are that families may not be cohesive to work as a team and facilitating that can be challenging." ~ Brett Miller
"My biggest challenge currently is learning how to deal with the additional health issues I have that are unrelated to Parkinson's. Finding ways to take care of my special needs daughter when I am not feeling well." ~ Gretchen White
"I think that my biggest challenge is not taking on the pain and the anxiety that another person shares with me. This is especially the case when I know that I might be particularly susceptible to the symptom or problem they are sharing with me." ~ Patti Burnett
"Advocating is time-consuming, as it's a passionate commitment. Sometimes I forget to take care of myself: Stopping for lunch, making a phone call, or getting enough sleep. It's easy to find ways to help others. It's difficult to prioritize those needs so I have enough time for myself and my family." ~ Carolyn Utesch
"The biggest challenge at times, especially with newly diagnosed, is coming to terms with their Parkinson's. Hearing those three words, 'you have Parkinson's,' changes your life instantly. Simply writing this paragraph brings me back to that day I was told I have Parkinson's. I still remember walking to my car and just sitting there for about 1/2 hour before I could drive away." ~ Tom Cosentino
What is the greatest reward?
"The greatest reward is seeing the look of fear and despair turn into hope and empowerment." ~ Marty Acevedo
"Feeling like you made a difference--no matter how small or large!" ~ Kerry Howard
"The greatest reward is knowing that we are helping people be their best advocates and live their best lives. Educating people to be knowledgeable enough to ask questions and even present answers is critical in today's world. The doctors are just too overwhelmed. We need to step up and help people become part of the process to get the best care possible." ~ Stacey Macaluso
"Listening to people open up and share their story, you both realize the similarities in your situation, especially when their story includes information new to me." ~ Neal Weierbach
"The greatest reward of advocating is seeing success not only for the person but for all those around them and then watching them advocate for others through personal growth and being an example." ~ Brett Miller
"My first greatest reward was putting together a book that shared the stories and faces of individuals with Parkinson's. My second greatest reward is starting a ministry for women on a journey dealing with chronic health issues. And my final greatest reward is graduating in May with honors and receiving my master's degree in Ministry...and also being asked to be a member of the school's International Honor Society Sorority!" ~ Gretchen White
"The greatest reward of advocacy is to know my efforts have connected others to meaning and purpose. The presence of fear, anxiety, sadness, isolation, and insecurity will ruin a life. The changes in someone's life due to appropriate advocacy can be confidence, hope, peace, happiness, and satisfaction." ~ Carolyn Utesch
"The greatest reward for me is when you have that a-ha moment. When you reach out and touch somebody, you can tell by their eyes and mannerisms that they get it. They understand they have Parkinson's but understand they are not alone." ~ Tom Cosentino
What would you tell someone else thinking about becoming an advocate for others?
"Establish boundaries. Be honest yet tactful. Listen, listen, listen. Don't give medical advice." ~ Marty Acevedo
"Recognize that advocating successfully will require time and effort. Help when you think you can, but know when to suggest that the task would be better managed by someone else. It is always a balancing act." ~ Kerry Howard
"I don't know that I would necessarily tell them anything. But maybe ask them out of curiosity what their goal is? If it's not to help people, I would rethink the decision. But that is not a decision for me to make for someone else. We all have a calling. If we stay true to the goal and the mission, we are doing the right thing." ~ Stacey Macaluso
"'Just do it.’ The rewards are personal and sublime, but they're there." ~ Neal Weierbach
"Be a good listener, do your homework, and make sure that your information and position with the person are credible and reliable. Lastly, a reminder that even when doing your best, you may not be successful every single time." ~ Brett Miller
"Jump in! Being an advocate is the best thing you can do for others and yourself. Being an advocate can bring you such joy knowing you are helping someone through a moment in their lives that is difficult for them." ~ Gretchen White
"The work of an advocate is time-consuming and constant. Our values and principles will be challenged. Good time management skills are critical. Also, advocacy requires a servant's heart. For me, this means serving others while remaining humble and selfless. So many behind-the-scenes hours are spent finding solutions for those we care about. The human desire to 'be seen' sometimes rears its ugly head when our efforts are not noticed or acknowledged. When we work hard for others, we must accept a quiet and hidden satisfaction that helping others is enough without spotlighting our efforts. Another essential element of advocacy is remembering that we do not have to set the sun or move the earth! Most of the time, just being present in someone's life is enough." ~ Carolyn Utesch
"I would tell them to jump in with both feet because the water is fine. For me becoming an advocate gave my life purpose. Being able to be in a position where you can take whatever life throws at you and still help others is a tremendous feeling. I've looked at my fellow Ambassadors as part of my family. It's always good to have a big family." ~ Tom Cosentino
Samantha Power, former United States Ambassador to the United Nations (2013-2017), said, "all advocacy is, at its core, an exercise in empathy." Advocacy for others shows up in the big and small ways. From listening without judgment to someone and their experiences to working on policy to make a change at the congressional level – we advocate for others by believing there is a better way to do things and showing up for one another.
Build your toolbox in advocating for yourself and others by reaching out to an Ambassador today!
Tips for Being an Effective Advocate from New Brunswick Association for Community Living
How to Be an Advocate for Yourself and Others by The Well Project
Top 10 Quotes about Advocacy by the Borgen Project