Accepting love, after receiving performative care
Welcome to my newsletter! This is a place where I share art, writings and what inspires me. This newsletter is free with the option to become a paid subscriber to receive exclusive posts, art and other things that I am still in the process of working out. Your paid subscription plays a hand in helping me to continue to create work as a freelance artist. Please share any screen grabs from this newsletter on your social media and share this newsletter with your loved ones! Not seeing these newsletters show up in your inbox? Please check your “promotions” tab or spam folder.
Thank you so much for being here!
I grew up in a childhood where surgery was a regular occurrence for me, I talk about this often throughout my own work. Being born with a rare syndrome called “Nager Syndrome,” my childhood consisted of countless surgeries & procedures to improve my mobility.
Having to navigate surgery meant to also see how people reacted me for undergoing them. How “sorry” they felt for me. When something is all we have known though, even if it’s not necessarily a childhood status quo, we don’t always feel sorry for ourselves as much as other’s feel for us. As I grew older, the more I became deeply conscious of how stigmatized the words “disabled” & “surgery” are to others. How people’s own anxieties about becoming disabled or having to undergo surgery, bled into their reactions to myself receiving a surgery. How people’s conditioning of a society deeply ingrained in eugenics & ableism, overshadowed their ability to just have empathy enough to hold me with love, when faced with surgery.
At the beginning of this year I had to have surgery, my first surgery since I was 21. As I grew into being a teenager still navigating doctor’s visits and surgeries I gain understanding deeply into why I was having these procedures. Being someone who was taken immediately to the operating room starting at birth, I didn’t have bodily autonomy or any autonomy for that matter. Nearing my last years of High School I was still in need of surgery. The surgery was to help my mobility with my jaw. I had braces on my teeth starting at age 11 to prepare me for this jaw surgery. All of this work to prepare me for the jaw surgery.
I had the jaw surgery as a teen and needless to say, it didn’t pan out the way it was planned. I was pissed. I was tired. I was experiencing a lot of facial dysmorphia. I, at that point understood that I didn’t want to keep having these medical procedures. I told my parents that if I were to have another jaw surgery, I’d want to get it before the age of 21. I wanted to be done with surgeries by the time I was that age.
The final jaw surgery happened when I was 21, the procedure went as well as it could and I finally was able to no longer have braces on my teeth. My young twenties brain thought that surgeries would be over and I could live a life where I wouldn’t have to face my Disability anymore. I of course quickly understood that wasn’t going to be the case. I remember really still feeling dysphoric about my face, especially now that there were some unexpected physical changes as a result to my surgery. I grew a beard. I hid the changes that occurred. It took most of my early twenties to get comfortable with my facial shifts, it was like a strange second puberty experience. I felt though in the last few years that I have really come home into my own body, I have learned to love my face and cultivate facial euphoria. I channeled (and still do) a lot of that facial euphoria I feel with the characters I draw. I remember the annoyance i’d have in High School and College art classes where teachers would ask me to draw “proportionate” faces, when my face was never nor will ever be “proportionate” in the eyes of conditioned beauty standards.
All of this to say, I was grounded in not having any more surgeries that had to deal with a doctor touching my face or teeth or jaw etc. That grounded feeling though changed when I learned I had to have a surgery on my gums late 2021. I opted to schedule the surgery at the beginning of this year. It brought up a lot of feelings. I was really shy to tell people what was going on, my loved ones of course knew but I felt weird to just post about it so publicly online as it was happening. I told loved ones and it was interesting to see that some folks had similar reactions I received as a kid, “oh that’s horrible you’re getting surgery” or “that’d scare me if I had to go through that!” I recognized that these loved ones really didn’t know me in periods of having so much medical procedures occurring. On the flip side too though, other loved ones brought in offerings of food and periodical check ins that made me feel deeply supported. The surgery went extremely well and I moved through it with ease. I received the care that I needed from folks. I remember though, one friend asking about whether or not I wanted to put together a GoFundMe or Mutual aid call for surgery payment, to which I felt hesitant at that time to do so.
I have been digging more into that hesitancy and have come to the recognition that asking for help has been deeply complicated for me as a Disabled person.
I have witnessed a lot of people and strangers treating me as a charity case or a token. I remember one of my first instances of when I was little, I lost my hearing aid at the playground. My hearing aid was a sand color at the time and of course, there was a lot of sand on the playground. I remember running up to the teacher telling her I lost it, which in turn forced her to stop recess. I see a whole line form for kids looking for my hearing aid. I remember being thankful that everyone went to help find it but I also felt a little guilty. That guilt feeling in my head sounded like, “oh if I lose this thing, the fun will stop?” as a child probably may end up thinking. The hearing aid was found and I was relieved. Soon after the hearing aid was found, I thanked the kid who found it only for another teacher to pull us aside and take our picture together. Little did I realize that it was for a small news blurb in the newspaper, celebrating the kid who found it. I was so thankful that kids took the time to find my hearing aid, but I felt really weird how that was celebrated. I didn’t know at the time that I had felt tokenized.
There had been countless instances before and since this one where things “stopped” due to me needing help. Then when I would receive help, the helper would be celebrated and I would be tokenized. I would be the “example” versus just receiving help for the sake of receiving it with no added fanfare. That tokenism also shows up in media and is one of the ways our world has presented Disabled bodies. In the Disability community this tokenism can be referred to as “Inspiration Porn.”
Coined by Disability rights activist Stella Young, she explains “I use the term porn deliberately because of the objectification of one group of people for the benefit of another group of people.”
On top of “Inspiration Porn” was also the Western influences of Individualism, an influence I was societally conditioned into that I am now finding extremely helpless and unworthy. I feel many people get wrapped up into an Individualist mindset. As a Disabled person I was afraid to be seen as a token versus a human being with deeply human needs. It’s almost as if the way the world has seen Disabled folks, mostly chalking them up to charity cases, has created a barrier for Disabled people making them feel unsafe asking for help. This may not be the case for every Disabled person, but I fell into the trap of individualism which kept me in scarcity asking for help.
Isn’t it sad, that our past experiences can sometimes attempt to sabotage ourselves, when all we may want is deeper love?
As I’ve been working on this newsletter I stumbled upon an Instagram post that sums up some good points on individualist culture. Jasmine Mariposa writes “I don’t want a future where I have to do it all myself — the culture of self sufficiency is a scam. I want my life to mimic the forest and her networks of roots and trees. I want connection and interdependence and symbiosis. A bird eats a fruit and a seed is planted with ease. A wolf makes a kill and a vulture feeds his family. Fungi decompose what remains and the soil is all the richer. Individualism is a poison in the waters.”
I was in conversation with my friend Jack the other day and we were both talking about the act of dismantling individualism. I love what Jack said which was that, “performative care is not the same as community care!” It took me a long time to find the words that fit my feelings and when they shared that with me, it felt so good to have words to those feelings.
Asking for help is deeply vulnerable, especially when it can be tied to our own bodies that need nurture. Asking for help is asking to be loved. Even in the midst of my traumas from receiving “performative care” over the years, I continue to look back at the community care that I received as well and continue to receive. The community care I received from my parents & their friends, from the nurses who watched over me and continued to build relationships with me as I grew old (rest in peace, Sue.) The care from my friend Bri after I had my jaw surgery in my early twenties who just wanted to get ice cream with me even if my face was deeply swollen and I was in feeling in physical pain and really dysphoric about my face. The care from the loved ones who checked in during my latest surgery in January. I sit in the care from my loved ones when they meet my access needs. I sit in the care I witness attending Queer community events in Atlanta. I sit in the care too from those who continue to believe in my artwork enough to support me in all the endless ways of support. I too do my best to show up for my community through whatever means I can.
Community care can look different for everyone. I am still exploring the love of that care as I personally evolve and I am still exploring what I can offer to my communities using the resources that I have. I’m still dismantling the individualism I was brought up in. I am also still working on releasing the guilt or fear i’d feel when asking for help. I now don’t feel as hesitant to ask for funds if my health gets to a space where I need more resources. We need each other. I recognize that while some people may see me as a person to pity due to my experiences as a Disabled person, that ultimately isn’t my problem - it’s simply a result of society’s internalized ableism that continues to run rampant. There will still be people, until the day I die, that will tokenize my being whether that’s because of my Disability, my Queerness or me being Non-binary. I too am now unsure if I will continue to be needing surgeries also, since the syndrome I was born with is so rare. I’m still sitting with that uncertainty.
It’s discouraging, yes but I have to do my best to trust that my vulnerability will only let love blossom. I have come to the understanding that refusing help and acting like I have it all “figured out” ultimately hurts ourselves and our loved ones more than having the softness to ask for assistance. When I sit in these feelings, that I am still actively processing, I think about a quote by Maya Angelou that simply reads “Have enough courage to trust love one more time, and always one more time.”
Four things for you!
I have currently been slowly reading Fariha Roisin’s “Who Is Wellness For?: An Examination of Wellness Culture and Who It Leaves Behind” which has really been heart and eye opening. Highly recommend taking some time to read this.
July kicks off “Disability Pride Month” and I appreciated @higher_priestess’s reminder about this month. They provide image descriptions in their post.
TW: Mention of Gun violence
Image Description: A graphic on Instagram featuring a photo of a Black trans nonbinary person smiling in nature with text that reads,
“Mutual Aid Request Venmo: @prince_samothy Cash App: $SamAldave @prince_samothy, a Black trans nonbinary person had a gun pulled on them at work while canvassing for Working America. After a lack of response from the organization, Sam has left this unsafe position and needs funds to sustain them until they can find a safer workspace. Please circulate!”
I took some time this week to listen to Adrienne Maree Brown’s interview on the “OnBeing” Podcast which was truly a joy to listen to.
Thank you so much for taking time to read my newsletter and I look forward to sharing more things with you soon! As always, I am available for commissions if you are ever interested in working with me. If there is anything that sticks out to you in this newsletter, please share it on social media or share it with your loved ones. I also have some merch available over at my online shop. Okay, enough self promotion, I hope that you are staying safe and well. <3