Lolo stops mid-sentence: “Hold on, I’m sorry.” She adjusts the camera angle as we settle down to Skype. “This is just the kind of thing I pay attention to,” she says. “It’s the vlogger in me.”
It’s been over two years since Lolo posted her first video on her YouTube channel, Sitting Pretty Lolo. The video – a mishmash of holiday selfies and snapchats from a birthday trip to Miami – is pretty rudimentary, but she says it was important to her to talk about travel as a disabled person: “Also I was really drunk the whole time and I wanted to show people I can party. Plus they had beach wheelchairs, which I didn’t even know existed until I went to Miami.”
Her channel now has over 8,000 subscribers (“subs”, as she calls them), and she answers their comments almost without fail. That must be time-consuming, I say. She makes a garbled noise: “It definitely takes up some time, I’m not gonna lie. One time I posted a video and there was like almost a hundred comments immediately, and I was like, ‘Oh SHIT, what am I gonna do now?’” But engagement with subscribers is at the heart of Sitting Pretty and she’s managing it by multi-tasking (“double-dutying it”).
At the age of 14, Lolo was diagnosed with ALS – a degenerative motor neurone disease that, among other symptoms, causes the muscles to gradually waste away. But 16 years later, she’s not only tripled the life expectancy of someone with ALS (two to five years from the time of diagnosis), but is holding down a nine-to-five job, running a thriving YouTube channel, and even finding time for a spot of acting and modelling.
She busies herself with the camera again: “I wish I could figure out how to rig this. Okay I rigged it. Perfect,” She breathes a sigh of relief. “I feel so much better now.”
She has come a long way since the Miami travel vlog. With titles like Things Not to Say to Someone in a Wheelchair and Top 5 Benefits of Being a Wheelchair User, her videos amass thousands of hits from disabled and able-bodied audiences alike. She recently collaborated with blind American radio presenter and film critic Tommy Edison in his YouTube series Blind vs. Blindfolded – the task at hand: name that sound.
She says YouTube has been one of the “most interesting and coolest life journeys” so far. “And I’ve had many different kinds of life journeys.”
For Lolo, making the move from her hometown of Stockton, Northern California (“a real small, low-key ass city”) to Los Angeles, Southern California – six hours away from the family she grew up with – was huge. “Moving out here and living on my own, navigating life – that’s one of its own journeys – navigating LA as a person with a disability, getting employment.”
Two years ago her prior diagnosis of ALS was overturned. Having reached her late twenties still exhibiting only minor symptoms of the disease, she knew her case was atypical. But it was after watching the hit Fox series Empire – the plotline of which includes a misdiagnosis of ALS – that she decided to look into a rediagnosis. Two years and many tests later, she’s officially (drumroll)… Undiagnosed. She says it’s a good thing, though, and her path towards a new – and, she hopes, better – diagnosis, is all to be documented on her channel.
When we speak, she hasn’t made a video in a while because she’s been busy moving into her new place and getting a new hair do – both things she can’t wait to show off on YouTube.
I tell her I love her new hair, and she’s clearly excited: “Oh yes, okay, so let me tell you about the hair thing, right – because that’s another journey in itself.” She changes her hair constantly, and wants this most recent transformation to be a surprise to her viewers. “I did a cool photo shoot and I’m gonna drop this fashion video. I want it to be a whole reveal thing.” She eyes me conspiratorially: “So this right here is between you and me.”
Her infectious bubbliness and positivity in her videos make for instant bingeability, even when the content is, at its essence, a rant in video form, as evidenced in Disability Pet Peeves and many more.
But her favourite topic to talk about is dating. It won’t be any surprise by now to learn that it’s the fun side of it she leans to. As she started to learn how to navigate the dating space as a person with a disability, she realised she needed to start sharing it. “We are just as open to dating and sexuality as any other person,” she says. “So why not talk about it all the time?! Plus – I’ve got a lot of success stories.”
In one video, she swoons as she counts down her top five crushes, starring Michael B. Jordan (“AKA Michael ‘Bae’ Jordan”) and Moonlight’s Trevante Rhodes (“That is chocolate in human form”). In another, a video review of a “pleasure cushion” (video title: Sex With Disabilities: More Cushion For The Pushin), she lifts the cushion up to the camera suggestively: “Let your mind wander, hunty” – (if you don’t know, google it) – “because yes.” She looks down at the velvet-covered cushion, “Yes, you can.”
She loves modelling, because of what it means in terms of representation: “Just knowing that I’m a person with a disability, and what that would mean on a screen. Especially being seen in a light that’s not so sad, and, you know so over the top. That means a lot to me.”
Envisaging the future of Sitting Pretty, Lolo is set on growth, but not for growth’s sake. “I want my channel to be the place where able-bodied people can come to learn,” she says. ”So that when they go out into the world and they come across a person with a disability, they know how to respond in a way that is human.” She clarifies: “Versus bullshit and acting scary and weird and stuff.”
Her dreams all focus on her followers and the impact she could make: “For parents to be able to come on my channel, and feel like my child can handle being an adult thanks to this girl. That’s the ultimate goal.”
Images Credit: Lorene Janae