NCS
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Lauren “Lolo” Spencer was that rambunctious woman you’d see on the playground: She cherished working, avenue hockey and dancing. But when she turned 14, she began feeling fatigued and have become involved after noticing that her muscle groups had begun to weaken.
“One night, I reached up to grab a plate out of the cupboard, and my hand dropped to the counter. My arm just completely dropped.”
Doctors identified her with amyotrophic lateral sclerosis, also called ALS or Lou Gehrig’s illness. The degenerative neurological situation weakened the lively teen’s muscle groups. By 19, she was utilizing a wheelchair to get round.
ALS sufferers sometimes survive two to seven years past their analysis. Spencer, nevertheless, isn’t your typical affected person. She’s been residing with the illness 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 flourishing on her personal however admits that it’s not simple.
Follow her round, and you start to grasp her challenges.
On a latest Friday, she was in her neighborhood, searching for a place to get a tattoo. At the tattoo parlor, she needed to cease her wheelchair about arm’s size from the door. She slung her proper arm, weakened from ALS, to the deal with and took a second to agency up her grip. She rolled her chair backward to assist open the door.
That’s the drill at lots of the companies 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 is aware of all of the on a regular basis hardships that come with a disability. But initially, she had bother discovering solutions or assist on-line.
“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 commenced sharing her personal “real deal.” Through her Instagram account, @itslololove, and her YouTube channel, Sitting Pretty, she offers perception, recommendation and help to the disabled neighborhood.
Inside the tattoo store, Spencer was seeking 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 mentioned. “I met him a couple of times, and he was an inspiration to me.”
Like Hussle, Spencer needs to be a constructive affect on the neighborhood. With over 11,000 followers on Instagram and over 10,000 YouTube subscribers, she has turn into a part of the “influencer” wave, however she facilities her content material round 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 manner Spencer is making an attempt to vary the best way folks see these with disabilities is by brightening the tone. Her Instagram account options photographs of her touring with pals, on vogue shoots and out clubbing. She says that too typically, the speak surrounding her neighborhood may be 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 trendy
Spencer can also be casting a totally different gentle on these with disabilities by means of her modeling work for firms 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 factor Spencer doesn’t wish to characterize 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 individuals within the disabled neighborhood particular.
“We’re able to live our lives as fruitfully as we can in spite of having some level of limitation,” she mentioned. “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.”