Neuro Note #2

I chose to read a short article and watch a short video about a young girl named Lauren Spencer or also known as "Lolo" who was diagnosed with amyotrophic lateral sclerosis at age 14. The title of this article is called "Diagnosed with ALS at 14, she's now a disability lifestyle influencer". Lauren  explained that one night she was reaching to grab a plate out of the cupboard and her arm just completely dropped. This was her first realization that something wasn't right. Later, the doctors eventually diagnosed her with ALS and this was why her muscles had been so weak. By age 19, she was using a wheelchair to get around. To most people's surprise, Lauren has been living with this diagnosis for 18 years now. Most people usually make it 2 to 7 years after being diagnosed, so this is truly incredible that Lauren has had 18 extra years since her diagnosis! She made a choice that ALS was not going to be her full story, and she has made the most of those 18 years. She is now in her 30's but she admits that it definitely has not been the easiest time for her. One of her biggest struggles is dealing with accessibility into buildings and transportation. She explains that "discrimination doesn't necessarily have to be blatant" and that really stuck out to me. Most people who can walk don't think about the things that individuals in wheelchairs have to deal with everyday. It may not be on purpose or anything like that, but people just tend to forget that little things like not having a dip in the sidewalk can make mobility difficult for wheelchair users. She began to search online for answers to these issues, but had some trouble finding the help she needed online. Lauren took this motivation and brought it to social media. She now has an instagram account called "itslololove" and a youtube channel called "Sitting Pretty". Through these platforms she gives advice, and insight to those in the disabled community. I think this is awesome that she decided to take matters into her own hands, and start these pages on social media to help others.
Lauren also models for companies like Tommy Hilfiger and Adidas. She likes to show people that individuals with disabilities have good fashion and style just like everybody else- which I love! She is very fashionable too, which I could tell from some of her pictures. Another thing that stuck out to me in the article was that she said she doesn't want to represent "inspiration porn". This is a term used in the disability community that means people will find anything to be inspired by just because a person with a disability is doing it. I believe that people think this way without even realizing it. They don't mean anything by it I'm sure, but it is nice that people are shedding some light on that. Just because someone with a disability is doing something doesn't make it any more "inspiring" than a typical person. I think Lauren has lived a very full life all the while dealing with ALS. I am excited to learn more about this disease in this class, which was the main reason I chose this article for my neuro note! By reading this article, I learned that even though you may not have a lot of time, you can still make your life worth while with the right mind set and attitude. As Lauren stated, "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."

References 

Bergeron, R. (2019, June 08). Diagnosed with ALS at 14, she's now a disability lifestyle influencer. Retrieved July 23, 2020, from https://www.cnn.com/2019/05/31/health/turning-points-lauren-lolo-spencer-als-disability-lifestyle-influencer/index.html