In our latest Participant Spotlight, we chatted with Marie Granucci. Marie shared what it was like growing up in the 80s and 90s with cerebral palsy, how social media and NCHPAD programs have helped her find a community, and more!
Tell us about yourself. Where are you from, etc.
I’m from Branford, Connecticut, and I have cerebral palsy. I am very active on social media in the disability community. But about ten years ago, I felt lost and didn’t know what I would feel like as an adult with CP.
As a child and a teen, my parents were always supportive, so I was in the back seat while they took the lead in making sure I had the proper education and therapy to make sure I was as independent as I possibly could be.
When I became an adult, I felt lost. I turned to social media and United Cerebral Palsy (UPC) for help, and I have just blossomed since then. I went on Facebook and found that there are so many CP support groups on Facebook. I liked some of them, but I wanted to make them better, so I started my own CP support group on Facebook.
I also started a blog called “Work Out with Cerebral Palsy,” and I talked about working out in the gym or exercising related how it helps with the CP. All of a sudden people were commenting on my blogs about life with CP. So I took “Work Out with CP” and made it about my entire life – not just working out in the gym, but everything from getting up in the morning to going to bed.
Everything is a workout for us. It takes 3-5 times more energy to do things that are easy for a nondisabled person. Putting on socks is a great example. It’s so easy for nondisabled people to put socks and shoes on. They don’t have to think about it, but it takes me up to an hour to put socks and shoes on. This is where the whole concept of where my blog came from. Everything we do and the energy we’re consumed with to try to do the most mundane things. I even have it tattooed on my forearm. Now I have a blog called “6 Legs to Independence.”
When did you connect with NCHPAD?
About a year and a half ago, I was on another work site signing up for a Zoom to see RJ Mitte, the character from Breaking Bad who has CP. I found some MENTOR information, and I signed up. I loved it and just blossomed from it. I have a lot of my writing from MENTOR, and I want to put them on my blog, but I just have so many that I have to get organized!
What NCHPAD programs have you been part of?
Both MENTOR and Coffee Club.
What did you like about the programs?
I like how in Coffee Club we’re all from the US but from different parts. We all get to share how we look at our individual disabilities.
We have people who have had their disability from birth or people who have gotten their disabilities from accidents or different situations in life. It’s nice to connect with other people and see things from broad perspectives, like how different people look at different parts of disabilities. No one is “woe is me” or “what am I doing here?” Everyone wants to be there and learn from everyone else.
In MENTOR, liked every class, but I really like the journaling portion with my Health Coach.
Tell us why you would recommend a NCHPAD program or NCHPAD Connect to someone else.
NCHPAD programs make you grow as a person. It helps you understand that there are other disabilities besides yours – and it makes you get out of your comfort zone.
What brings you joy?
I like to get my hands dirty. I’m an artist. I love to write. I love to knit. I love to color. I love to work out and go for walks.
I love knowing I have my independence. It took me so long to be able to live on my own. A funny thing is that three months after the pandemic started, I got a letter saying that there was an apartment for me. I was finally living on my own but was locked in my bedroom for a year or two.
How has this impacted your life? Is there anything you’ve learned from NCHPAD that has impacted your life?
I’ve learned to look inside myself and not just look outside myself. This helps me understand what makes me tick and what I want to accomplish. All of the classes helped me accomplish this.
My family was very open with me about my disability. Growing up in the 80s and 90s, it was hard because I was 1 of 2 people with a disability in my school at the time. My family had to fight for accessibility in schools and the fact that teachers thought I was just taking up space and wasn’t capable of learning or graduating high school. I did graduate high school and I’ve graduated from college twice.
Is there a particular person you’d like to give a shoutout, like an instructor, health coach, etc?
Lacey, my dietitian in the MENTOR program helped me a lot along the way with my diet journey. Stephanie Ward, who runs Coffee Club, also has been great. Ingrid Pfau on the video team has been lots of fun to work with.