The article "Diagnosed with ALS at 14, she's now a disability lifestyle influencer" follows the story of Lauren "Lolo" Spencer. When Lauren was 14, she noticed that she was often tired, and her muscles felt weak. Soon after, she was diagnosed with Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig's disease. ALS is a degenerative neurological disorder that affects the body's motor neurons, leading voluntary muscles to atrophy due to a lack of innervation. It is also a disorder that progresses exceptionally quickly in most cases, with the average life expectancy being two to seven years following the diagnosis. Lauren, however, was not in most cases. 18 years following her diagnosis, now in her 30s, Lauren is still living on her own and has thousands of followers on social media as a "disability lifestyle influencer."
Although she lives independently, she still faces challenges due to her diagnosis. She has been using a wheelchair since she was 19 and faces barriers due to the lack of accessibility to specific locations in her community. She struggled growing up to find a community to share her hardships with and get support from, so she created one through her Instagram and youtube channel. On her social media, she shares advice, life hacks, and experiences in the hopes of helping others with a disability and altering some preconceptions about what a disability looks like. She does it in a fun, relevant, and youthful way. She talks about inclusive language and all the amazing things she does and learns about her disability. She is empowering, positive, extremely fun, and relatable.
She has modeled for some major companies, including Adidas, to remind people that people with disabilities are "fashion consumers just like anyone else" and to communicate that she sees her disability as an honor. In the article, she shares that she wants to be sure not to represent "inspiration porn," something I have never heard of. She explains, "it's a term used by the disability community where people will find anything to be inspired by because you're a person with a disability doing it." I had never considered this idea and ultimately heard what she was saying. I think it is easy for people without a disability to unintentionally belittle or pity the experience of those with a disability. Being in "awe" of someone's bravery in living with a disability is demeaning and belittles the existence of those individuals to their disability. Regardless of their disability, all people deserve to be empowered and treated with respect and dignity.
If you want to follow Lauren, her Instagram is @itslololove, and her youtube is Sitting Pretty, linked below.
Youtube channel: https://www.youtube.com/c/SittingPrettyLolo
Bergeron, R. (2019, June 8). Diagnosed with ALS at 14, she's now a disability lifestyle influencer. CNN. Retrieved August 24, 2022, from https://www.cnn.com/2019/05/31/health/turning-points-lauren-lolo-spencer-als-disability-lifestyle-influencer/index.html
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