Representation Matters

(Originally posted 3/12/19)
This is a blog repost. While recently hanging out with my niece we noticed that there aren't a lot of characters using crutches or in wheelchairs, so I was automatically inspired. I didn't know how to start it, so I wrote it as an answer to a writing prompt. Looking at my notes I wrote everything I needed here already. I organized my notes and thoughts, but this may take a while to post because I need to figure out how to word everything perfectly to get my point across.

It wasn't until almost two months ago when I was with Nana that I realized something. We were watching one of her shows, Goldie and Bear when I saw Marian Locks (Goldie's mom) in a special wheelchair like my niece's. I commented on it, and she said she hasn't seen another character in a wheelchair. Even though she's only seven I thought it was best to be honest with her. I told her that I only saw a few characters in fiction as well. When I saw the look in her eyes it broke my heart. She doesn't see a lot of characters that represent what she's going through. I still remember how she looked at me when we first met and she realized I also have to work really hard to walk.
I was born with Cerebral Palsy (CP) which even doctors I am a patient with ask me when they first meet me. Cerebral Palsy is a group of permanent moment disorders with signs and symptoms including things like poor coordination, stiff or weak muscles, and tremors. It's been classified as a neurological disorder. People ask if it's a one size fits all, and it's not. Keep in mind any disoder or disability is not a one-size-fits-all. My CP is mild and mostly effects organs and muscles behind and below my belly button. Everyone who sees me knows my legs don't work as well, but not everyone knows my bladder sometimes freezes up and I have to self-cath. For those of you who don't know, self-cathing is putting a plastic tube up into your bladder to relieve the pressure by emptying the contents. It's not something I want to talk about it because it's embarrassing, but I feel it's better to say now because I'm trying to point out it's more than just what people can see.
Nana has Spinal Muscle Atrophy (SMA). After talking to Mom she gave me more information. The disorder is because she is missing the SNM1 gene. We all have 4 of them. And we also have a backup SMN2 gene (SMN is survival motor neuron). Her missing gene is why she doesn't walk. There is a video on the BIOGEN website that explains it. Biogen is the pharmaceutical company that makes the injections she gets. SMA is a neuro-muscular disorder characterized by loss of lower motor neurons. She is on the mild end of the spectrum. Because of this she cannot walk currently. When I asked Mom if she'll be able to walk, and she replied, "...walking is the final goal, but she has a lot of work ahead of her."
I wanted to write a little about both our disabilities before diving more into what happened. I always wanted to start this with I was surprised and happy when I saw Grover from Percy Jackson rocking the crutches I used. (I will get back to using them all the time with hard work.) Which is true. But I wasn't any less excited to see a young character, Christopher Diaz in the show 9-1-1. He has Cerebral Palsy. Because when I think of characters with crutches those are the only ones who come to mind. Not to say those are the only ones, but they're the only ones who come to mind.
Grover in Percy Jackson was seen in February in 2010. I had honestly convinced myself it was no big deal that I didn't see too many characters like me. Maybe it helped that I saw characters like Stevie from Malcolm in the Middle, Professor X from X-Men, and Felix from Kim Possible in wheelchairs growing up. It was nice to know what happened to Professor X. It was also cool to see Kim Possible get all flustered and awkwardly protective of Felix like he would break at any minute. Some people would do that to me. Just because we have disabilities doesn't mean like's going to stop us from living the life we want. It didn't stop those characters from living their lives.
At the same time I was ecstatic when Christopher in 9-1-1 had his first appearance. It was even better when I found out he's a reoccurring character. He has Cerebral Palsy like me, but his condition is a little worse. Then better still they were portraying him and his condition correctly. His dad was worried about him, but he knew his son needed to do things on his own and babying him wouldn't help. His son needed help at home not only because he had Cerebral Palsy but also because he's an elementary school kid. It is highly believed that people who suffer from CP have learning disabilities. Seeing someone in fiction who was going to a special school to cater to his needs was really cool. My parents and teachers were worried about me having a learning disability. I needed extra time on tests, essays, ect. But with the extra help I received here and there I succeeded. It's great to see that Christopher's education is important even if he's not a main character.
And now I'm excited to see Fredrick "Freddy" Freeman in the new Shazam movie. He has crutches ad what looks like a strong personality.



A friend of mine, Jordan Davis, drew this picture of me. ^-^


While working on this post I found this article that made me very happy. I even shared it with Nana and Mom. https://www.disabilityscoop.com/2019/02/06/new-emoji-include-disabilities/26001/?fbclid=IwAR2GEi1BLsQF5ZaC7LHMYNCE4L8Ci2vjFl7ta7ptbHmCOkAYKCbGORMaxpw

I was sent this link by Twin. I hope to see these dolls in stores in June because I feel I've heard this before a few years ago. I showed them to Nana, and she thought they looked cool. https://www.buzzfeed.com/aliciabarron/a-new-line-of-barbies-with-disabilities-was-unveiled-and?fbclid=IwAR3at6q7Cezvg8P6_DfRt7NMPBCqnCFBuAyTeJqUXccIGm1_sSonnw79zDk

Mom sent me this link to better explain SMA. http://www.curesma.org/

3/19/19 UPDATE: Over the weekend the topic of representation in fiction came up within my family. While hanging with Nana I overheard Dad (in law) and Richard discussing autism in the fictional world. Richard is sick of only seeing autistic savants on TV when that's not the only type of autism. I've only seen one character who wasn't an autistic savant in fiction, and that's Max Braverman from the 2010 show Parenthood. He got agitated a lot causing him to yell a lot and lash out, and his family was doing their best to learn as well as teach him to live with his autism. Towards the end of the series Max met Hank, a man who has autism but that doesn't stop him from being a successful photographer.
The next day I called Mom and brought up the topic with her as well. Since it was about representation of disabilities in the media we also talked about my research for work for a bipolar character, a bipolar character I believe is accurately portrayed for the decade they are in, and then we discussed this blog. When we were talking about autistic savants in fiction she said, "...It's good to show the best and not make them scary." I explained my blog and everything. The point is even with more people with disabilities on TV we need to show everything that comes with it. The good and bad. The difficulties along with the good times like portraying J.J. DiMeo in the show Speechless. He has a much more severe case of Cerebral Palsy like the actor who plays him Micah Fowler. After I explained everything in my opinion my mom said, "Oh. I'm saying I'm glad you're finally getting representation, but you're saying it's not enough." I also understood her point of view.

Speaking of Micah Fowler, I have a couple links he's been in recently.


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