Meet Lolo Spencer; the force of nature who stars as Jocelyn in HBO Max’s Sex Lives of College Girls and the creator of “Sitting Pretty,” a YouTube channel on Lolo’s fabulously fashionable life as a woman in a wheelchair.
At the young age of 14, Lolo was diagnosed with amyotrophic lateral sclerosis (ALS) – a rare neurological disease that affects the nerve cells responsible for controlling voluntary muscle movements. But despite her disability, Lolo lives life fearlessly and does it with vibrant sass and style.
Jennifer Norman, the Human Beauty Movement’s founder, had the privilege of interviewing Lolo for The HBM’s Role Models podcast to discuss how, despite her ALS diagnosis, she’s living out her acting dreams in Los Angeles while also being a bright, inspirational voice for others who may not have the platform.
Read on to see what Lolo has to say about growing up playing sports and dancing before her diagnosis, why she started a YouTube channel, her latest acting roles, her favorite accessible designers, and the current state of inclusivity in the entertainment and modeling world.
Jennifer: Tell us about your origin story!
Lolo: I was born in California to a family that I was blessed to have. I mean, life was always good for me honestly; I have no complaints. My family was definitely one that was probably living in some level of poverty, but we were so happy that we never realized it.
All I can remember is that we had so much joy and laughter in our home, so we never had a care in the world. But looking back, you don’t realize these things until you’re a teenager. Then you’re like, “Wait a minute; why are we eating the same meals for two weeks straight?”
Jennifer: Growing up, you loved running, street hockey, and dancing, but you’ve mentioned that when you turned 14, you started feeling fatigued and became concerned after noticing that your muscles had begun to weaken. Can you tell us about your diagnosis?
Lolo: I really started to feel some slight differences towards the end of my eighth grade year. I used to like playing street hockey as that was one of the main activities at our school. I wouldn’t call myself an athlete, but my friends played, so I decided to play. This is also the time in my life when I started to notice fatigue.
Speaking of fatigue, I have one memory that really sticks out in my mind. As I was making dinner one day, I reached up to the cabinet for a plate and my whole arm fell to the counter, but the plate stayed in my grasp. I was confused because my body acted independently, yet I managed to keep the plate from falling. It was an odd experience for me.
One day I asked my mom why I could no longer jump as high, which triggered her to start taking me to doctors and specialists to find an answer. A few months later, we ended up at the ALS and Neurodegenerative Disease Center, which is where I received my diagnosis.
Pictured: Young Lolo Spencer Source: Media
Jennifer: How did you react to learning that you had amyotrophic lateral sclerosis (ALS)?
Lolo: To be honest, I didn’t have a reaction only because the term “disabled” wasn’t used, like ever. My mom would tell me a bit about my disability and how my muscles would weaken over time, but it honestly didn’t register to me.
Jennifer: At what point did you find that you needed to have some assistance with walking and whatnot?
Lolo: In my freshman year, it was recommended for me to use AFOs to help lift my feet. AFOs’ for those that may not be familiar, are these supportive boots that you strap on to help your ankles stay in a specific position; they’re super helpful, especially for walking. At that time, I had no idea what AFOs did, so that was a learning curve.
My school also made amazing accommodations for me, mainly because my guidance counselor was incredibly supportive. Shout out to Mr. Bradbury! I made it known that I didn’t want to be in separate classes from my friends, and the school complied by allowing one of them to walk me to my classes every day.
Another one of these accommodations was the fact that I could be 10 minutes late to class as it would take me longer to get around campus. Because I was 14, that little 10-minute leeway – well, I did take advantage of it by taking a little longer during lunch – but hey, I was young. The support was there, though, and that’s all that mattered.
Pictured: Lolo Spencer Source: Voyage LA
Jennifer: Today, you host a show on Youtube, “Sitting Pretty,” where you discuss fashion, ableism, and even dating while disabled. What made you decide to start making online content?
Lolo: Truthfully, I started the job because of a bad experience at a prior one. I had a boss that was constantly giving me warnings about firing me or letting me go. I was always doing my job, but I wasn’t doing it the way he wanted me to. I was essentially being told that they’d take away my income, my independence, and my health benefits.
I felt like they were threatening me in a way that I don’t even think they could recognize. For someone in my position, it was a huge deal. I finally told myself that I didn’t ever want this to happen to me again, so my mom and I began discussing what I could do to start taking advantage of my own life and livelihood.
One day, I brought up the whole YouTube idea. After all, I have a degree in video production, and people were making crazy money creating content. I decided I’d just talk and educate about living life as a wheelchair user, and again, the word “disability” didn’t even cross my vocabulary at the time, even as a grown-ass woman.
I wanted to show people what my life looked like, and how content I was. My main purpose was to prove to people that living a happy, fulfilling life in a wheelchair was completely possible. So that’s how the whole “Sitting Pretty” idea came into reality.
Jennifer: You’re also rising to fame in the entertainment industry! You’re currently starring as Jocelyn in The Sex Lives of College Girls, and your role in Give Me Liberty won critical acclaim. Did you always want to act?
Lolo: It’s a great show that’s full of so much comedy. I just love playing Jocelyn, more than anything. Mindy Kaling, our creator, and Justin Noble, who’s our showrunner, have really done an amazing job at developing a character with a disability where we’re only learning about her personality and her humanity.
They take real risks with Jocelyn’s character, and I love that they’re making her the one that the four main girls go to because she knows where the parties are at, plus she has great advice on how to talk to guys. Jocelyn is their go-to girl, right? And you’ve just never seen that on TV.
Pictured: Lolo Spencer in The Sex Lives of College Girls Source: Static
Jennifer: In addition to acting, you’re casting a different light on those with disabilities through your modeling work for companies like Tommy Hilfiger and Adidas. Do you have any favorite brands that offer adaptive and accessible clothing?
Lolo: I’ve got to shout out Tommy Hilfiger Adaptive; they introduced me to adaptive clothing for sure. IZ Adaptive is another brand I love. In fact, IZ Adaptive’s pants were the first adaptive pants that I tried.
Jennifer: Your stylist! I just love what she puts you in. Let’s give her some love.
Lolo: Of course! We always give Stephanie Thomas her flowers. She’s been a stylist for over 25 years, and she specializes in dressing people with disabilities. She has developed her own dressing system that allows people with disabilities to dress themselves with dignity, pride, and independence.
Her system allows you to be able to go to any clothing store and know how to shop for yourself and your body type in a way that allows you be stylish and dress with the brands that you want to dress with. Stephanie is incredible, and she changed my entire sense of style on a personal and professional level.
Jennifer: How do you feel about the current state of inclusion within the entertainment and modeling industry?
Lolo: While I do feel like there’s a shift happening, I believe there is definitely so much more that can be done and so many more television characters that can be created around those with disabilities, along with roles that don’t necessarily have to be called out for a disability.
But if there is a role, specifically that encompasses a person with a disability, then don’t shy away from their existence, humanity, or personality. You don’t have to create a character that’s surrounded by the crux of their disability. But making a character so far left that it’s not about their disability is also unrealistic.
It’s all about balance, and I’ve come across some projects with these big issues, but it’s part of the process of being an actor, right? There’s always going to be that monologue or dialogue about how that character isn’t their disability. But I don’t usually do these, and I don’t have to.
Jennifer: Do you have any advice for those struggling with their disability?
Lolo: First and foremost, I always tell people that I get it. I can understand it, and I can empathize with it. But I make sure to mention that it’s a process to get to where I’m at. Don’t expect yourself to go from feeling down on yourself to being proud of who you are; it’s an everyday process.
The way I look at it is this: Does it make you happy to be in a pity party for yourself? Are you happy being there? Does it make you joyful? Do people like being around you when you’re there? Do you have fun in that space? If all of those answers are no, then do whatever you need to do to feel the opposite. Change yourself and change the game.
And that change? It could be as simple as doing something that you want to do. You can even ask your support system for advice. If there are family members talking to you in a manner that you don’t like, for example, ask others for help or ideas on how to move past this.
There’s a level of asking for help because you truly need it, and then there’s a certain amount of enabling, which could be triggered by a specific dynamic within your friend and family circle. This can cause you to not do enough for yourself, when in reality, you’re capable.
If there isn’t someone that can support you in that way, though, then try to seek other ways to find a solution, and honestly, it might even drum up your creativity. Just make sure not to limit yourself, and be appreciative of everyone and everything in your life.
Jennifer: Tell us what you have coming up!
Lolo: So, I just finished the manuscript of my new book, and I’m so excited. Season two of The Sex Lives of College Girls was just announced. I’m also a voice actor in the new Disney Jr. Animation called Firebuds. I voice the character of Jazzy, and she’s the most adorable thing ever.
I’m launching a lifestyle brand called Live Solo, which is dedicated to young adults with disabilities. People have always asked me how I wear so many hats, so this is going to be my opportunity to share all of those different ways that I was able to get to where I am today. We’re just gonna keep growing and keep moving forward with new plans and ideas.
Pictured: Lolo Spencer Source: Voyage LA
To hear more of Lolo’s interview on the Role Models podcast, where she chats in depth about her family, high school, the evolution of the wheelchair design, and the confidence she’s fostered throughout the years, click here.
Get Involved With Disabled But Not Really
Lolo is no stranger to advocating for causes she believes in, which is why she’s publicly shared her support for Disabled But Not Really (DBNR) through her social media accounts. She, along with The Human Beauty Movement (The HBM), believes that our world can be a safer, more inclusive place for those with disabilities.
DBNR’s mission is to instill into the disabled community, a physically limitless mindset that breeds courage, confidence, and competence. The non-profit seeks to inspire people living with disability and their community to embrace the challenge of creating inclusive environments that permit everyone to maximize their own potential. You can get involved with DBNR here.
If you’d like the support of others who share your views on inclusivity and acceptance, join The Human Beauty Movement community here.