Not a Burden

I initially was going to write about something else today, but I was inspired by something I watched yesterday to go in a different direction. A new anime aired its first episode recently called  Love Unseen Beneath the Clear Night Sky. Sorano is a college student who meets a girl named Fuyutsuki. He is surprised by the fact that Fuyutsuki has such a bright personality despite her blindness. When he sees her in class the following day, he realizes that Fuyutsuki uses a lot of assistive technology for her day-to-day living (a mobility stick, braille books, note-taking tech, and touch and voice recognition on her phone). Even though Fuyutsuki is blind, it does not prevent her from participating in the outside world. 

I appreciate that this anime came out during Disability Pride Month because it helps to illustrate something that is not seen that often: people with disabilities, especially when it is about daily living. In the U.S., about 26% of people have a disability. However, only 3.1% of characters are portrayed as having any type of disability. In my family of four at home, I am the 25%, and I barely see disability issues talked about, considering it affects a quarter of the country. It is not only sad, but quite damaging. 

How is it damaging? Media is the primary way people learn information, whether from news, television, movies, etc. People look for examples of those who represent them. When there is barely any representation, it makes a person feel like there is no one else like them out there and their experiences don’t matter. I have personally felt that way. I remember watching an episode of Downton Abbey when one of the characters was paralyzed. The show portrayed it like it was the end of his life because he didn’t want to be seen as a burden. 

That episode stuck with me ever since. I wondered, “Am I a burden to others?” “When my disability advances, will people want to stand beside me or will I be cast out and alone?” It wasn’t until I saw films, TV, and anime like Forrest Gump, Atypical, The Invisible Man and His Soon-to-Be Wife, and A Sign of Affection that I saw disabilities portrayed in a more positive light. 

What can we do to change things? Here is what it looks like for me: creating awareness by talking about more books, TV, movies, and anime that deal with disability issues. But in the meantime, I will start by sharing what my day-to-day living looks like. 

Usually, I wake up between 6-8 a.m., depending on what my family has planned. I check out Substack, my email, and read a couple of chapters of a book (today it was Yesteryear) before my morning routine starts. Mornings consist of taking meds, having my diaper changed, having the inner cannula and area around the trach changed, having an albuterol treatment, changing the breathing setting on my ventilator, and eating breakfast. While eating breakfast, I watch some anime (today that consisted of watching The Oblivious Saint Can’t Contain Her Powers, I Want to Love You Till Your Dying Day, and Victoria of Many Faces). 

After that, I write for a while (today being this article) until between 3-4 pm, when it is time to take meds again, have another albuterol treatment, eat some dinner, and watch more anime or a TV show. Then at around 5 p.m., I have my diaper changed and my family uses a lift to carry me from my bed to my wheelchair in the living room, where my mom, sister, and I watch the soap General Hospital (watching has become a ritual at this point). 

In the evening, things vary. If no one is watching TV in the living room, I spend a couple of hours streaming or watching anime. If someone else has access to the TV, then I will read and write for a couple of hours. By around 9 p.m., it is time to take my night meds and my final albuterol treatment for the day. Then, I spend another 2 hours either reading, writing, or streaming something before going to the bathroom (I have a potty chair), and then my family uses the lift to carry me back to bed. 

There are usually slight changes to my routine, like when my physical and speech therapist come over (they only tell us the day they are coming, but not what time, which is inconvenient and sucks) and when I have to go out for appointments (which is playing Russian roulette of whether the ambulance company is going to pick me up or not). I also do remote book club meetings, which vary from 2-4 times a month. Also, my disability plays a part in what I can actually do in a day. Good days are when I have energy to do my normal routine. On bad days, I have no energy and can barely do anything. However, I don’t let the bad days stop me and try to focus on the positives. 

I hope this gives you guys a little insight into what daily living with a disability is like. I know that it seems kind of boring, but I am actually doing a lot more since my disability took a turn for the worse. I was a social shut-in who didn’t reach out and stayed mostly at home and work. Don’t get me wrong, I still wish that I was still walking and not attached to a ventilator. However, I feel I am doing more because I dared to follow my dream to become a writer and reach out to others. I want to create awareness that living with a disability is possible, and hope that through this awareness, people become better informed about disability issues and become advocates. With more advocates, I hope that the world can change the perspective of disability issues as a whole. 

Research Information: 

https://www.scholarsandstorytellers.com/blog/diversity-in-hollywood-the-case-for-authentic-disability-representation-in-film-and-tv