(CNN)Lauren “Lolo” Spencer was that rambunctious girl you’d see on the playground: She loved running, street hockey and dancing. But when she turned 14, she started feeling fatigued and became concerned after noticing that her muscles had begun to weaken.
Doctors diagnosed her with amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease. The degenerative neurological condition weakened the active teen’s muscles. By 19, she was using a wheelchair to get around.
ALS patients typically survive two to seven years beyond their diagnosis. Spencer, however, is not your typical patient. She’s been living with the disease for 18 years.
“My body has changed very slowly, thankfully. I just made a decision that I was going to live my life to the fullest. [ALS] was not going to be my story.”
Now in her early 30s, Spencer is thriving on her own but admits that it’s not easy.
Follow her around, and you begin to understand her challenges.
On a recent Friday, she was in her neighborhood, looking for a place to get a tattoo. At the tattoo parlor, she had to stop her wheelchair about arm’s length from the door. She slung her right arm, weakened from ALS, to the handle and took a second to firm up her grip. She rolled her chair backward to help open the door.
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That’s the drill at many of the businesses she frequents. “Accessibility into buildings, public transportation, even realizing there isn’t a dip in the sidewalk to get across the street — discrimination doesn’t have to necessarily be blatant, person to person.”
Having used a wheelchair for 12 years, Spencer knows all the everyday hardships that come with a disability. But initially, she had trouble finding answers or help online.
“There wasn’t a lot of people talking about disability lifestyles and our personal experiences. There really wasn’t anyone giving the real deal.”
So she turned to social media and began sharing her own “real deal.” Through her Instagram account, @itslololove, and her YouTube channel, Sitting Pretty, she gives insight, advice and support to the disabled community.
Inside the tattoo shop, Spencer was looking to ink a memorial to Nipsey Hussle, the hip-hop artist who was fatally shot in March.
“I want to get the ‘God Got Me’ tattoo that Nipsey had,” she said. “I met him a couple of times, and he was an inspiration to me.”
Like Hussle, Spencer wants to be a positive influence on the community. With over 11,000 followers on Instagram and over 10,000 YouTube subscribers, she has become part of the “influencer” wave, but she centers her content around being a “disability lifestyle influencer.”
“I do product reviews, life hacks, give dating and relationship advice. Also, just general life advice, because sometimes, as a person with a disability, it’s challenging dealing with society, because there’s all kinds of stereotypes and assumptions.”
One way Spencer is trying to change the way people see those with disabilities is by brightening the tone. Her Instagram account features shots of her traveling with friends, on fashion shoots and out clubbing. She says that too often, the talk surrounding her community is very somber or has an “air of sympathy.”
“I ain’t sad about my life. I have learned to embrace my disability and have fun and be positive about it.”
Fly and fashionable
Spencer is also casting a different light on those with disabilities through her modeling work for companies like Tommy Hilfiger and Adidas.
“Modeling is so important to represent that people with disabilities are fashion consumers just like anyone else. We could be just as fly and fashionable as any other person on this Earth.”
The one thing Spencer doesn’t want to represent is “inspiration porn.”
“It’s a term used within the disability community where people will find anything to be inspired by because you’re a person with a disability doing it. People will be like, ‘Oh, my gosh, you’re so great for eating by yourself.’ Is that brave, or is it just because I’m hungry?”
Spencer says she sees her disability as “an honor, not a burden.” She believes there’s an optimism that makes many people in the disabled community special.
“We’re able to live our lives as fruitfully as we can in spite of having some level of limitation,” she said. “We’re able to thrive, be entrepreneurs, be influencers and live to the best ability. I’m living my best life as much as I can with what I have.”
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