When will my grandmother be “allowed” to participate in society?

7 years ago, my grandmother went in to receive a colonoscopy. A colonoscopy is an outpatient procedure, meaning you can go home the same day.  My grandmother had health issues and dealt with chronic illnesses, so it was a routine procedure for her to get. It was so routine that my family and I didn’t even think twice when she mentioned getting it done.

We were visiting our family friends, I was sitting on the couch with my father and my brother, our family friends sitting across from us. My father had just asked them to turn down the music we were listening to and I could see the look of seriousness on his face, different from just 5 minutes ago. He’d received a call from my mother. During my grandmother’s colonoscopy, the surgeon punctured her intestines, causing blood and intestinal fluid to leak into her abdomen and eventually cardiac arrest. My grandmother’s heart had stopped three times and she had lost significant amounts of oxygen to her brain, resulting in brain damage.

The physicians didn’t believe my grandmother would make it or even that she would be where she is today. My grandmother had to relearn how to walk, how to talk, how to eat, etc.. It was through being with my grandmother through all this that I learned how unfit and unaccommodating our society really is to people with disabilities. 

As Sunaura Taylor described in “Examined Life” by Judith Butler and Sunaura Taylor, at what point between health and death are disabled people viewed as human. When people refuse to help my grandmother in the store, or the looks and comments she receives whenever we’re in public, makes me vehemently question why? Why is my grandmother dehumanized and made to seem as though she’s making other people feel uncomfortable just by existing? She is still a human being who deserves respect. Those with disabilities are human beings who deserve respect and deserve to participate in society. When will my grandmother be “allowed” to participate in society?

That Girl from the Gucci Store

SZA has been one of my favorite artists for a while. So many of her songs hit different for me in so many ways, giving me a link to femininity in a way that I don’t really have otherwise. From messy breakups to the unhealthy behaviors that follow to hating everyone but especially yourself at times, to finding those small moments where everything feels like you can be at your best. I went to her concert last night and was amazed at the energy of the crowd for the entire setlist – you could tell which songs meant the most to us and what lyrics we could sing too passionately about amongst people who have felt the same feelings about them.

One of my favorite songs from her has to be “Special” from her new album, SOS, which she performed during the segment of the show where she came out on a lifeboat and floated across the arena. I’d always scream sing the intro to this in the car when I’m driving late at night trying to escape my head, so it was extra special that I got to see this live and see everyone else live the same moment I was.

I wish I was that girl from that Gucci store

She never wore any makeup and she owns couture

I got pimples where my beauty marks should be

I got dry skin on my elbows and knees

I never liked her, wanted to be like her

Hate how you look at her ’cause you never saw me

Like I was an art piece, like I was an ordinary girl

Toward the end of Young’s “Throwing Like a Girl”, she gives us this quote: “she gazes at it in the mirror, worries about how it looks to others, prunes it, shapes it, molds and decorates it. This objectified bodily existence accounts for the self-consciousness of the feminine relation to her body and resulting distance she takes from her body.” Now, if you’ve listened to SZA’s discography, you know that so much of her music speaks about being a girl – that is, living up to every expectation placed on you. The way she talks about femininity makes girlhood so much more relatable to me when she discusses the standards we place on ourselves when we see other women and can believe they are art pieces, but are still working to believe we can also be seen in the same way. I think it, all the beautiful women I saw singing along probably think it, and SZA herself must think it if she decided to sing about it.

The girl from the Gucci store that she wishes she was must think the same way, then.

Image of SZA in a red dress on her floating lifeboat 50 meters above the arena’s floor with a warm spotlight washing over her while she reaches out to the left.

F-A-S-H-I-O-N What Spells Gender Neutral Fashion?

First it has to be acknowledged that there is no one “look” and everyone perceives labels to mean different things. How one styles their clothing is going to reflect what they think looks good on them and expresses themselves accurately. Everyone has a unique perspective that has been shaped by their experiences. Just because I perceive these things as gender neutral does not mean everyone does and it should also not be assumed that wearing any style associated with gender neutral or gender non-conforming makes someone gender-non-conforming. To that end, wearing or dressing in a way that might convey a gender (such as wearing more masculine or feminine clothing) does not mean that someone identifies as how you are perceiving them. As tik toker kissmychaase put it “Even when I’m fem I’m still a them.” meaning even if this person dresses feminine they still go by they/them pronouns and that should be respected.

The clothes, shoes and accessories we put on our bodies says a lot about who we are and deeply influences how others interact with us. In “not just the reflexive reflex” by Mary Kosut and Lisa Jean Moore clothing and accessories are described as part of an identity-kit. When this identity-kit is stripped away it takes a chunk of someone’s individualism and uniqueness. Clothing is important, it allows self expression and can create comfort.

Fashion is outfits (clothing and accessories) and make up that project one’s belonging to a certain group. There are many types of Fashion. All of it is subjective and while some outfits are easier to deem as part of a subculture, others are harder to identify or explain. Some examples of fashion subcultures are Goth, Lolita, Hipster and so many more.

Gender neutral fashion is one of the most extensive groups of fashion. Mostly because it encapsulates so many other subcultures and can drastically change with each one. Each subculture, country and group of people are going to have another perception of gender and normal, and with that the idea of gender non-conforming changes.

America and many other parts of the world live in a gender binary, the perpetuation that there are only two genders male and female and someone is either part of one or the other. In Western society things like skirts, frills, lighter colors and dresses are considered feminine and associated with women. While simpler colors, pants, collared shirts, and suits are considered masculine and associated with men.

Gender neutral fashion usually aims to make it unclear what someone’s gender is, this can include techniques such as baggy or more rectangular clothes to hide body shapes, underwear like boxer briefs which can work for anyone, and culottes which can be described as pants that are flowy enough to also look like a skirt.

Here is an article with some brands and examples of gender neutral fashion :

https://www.bustle.com/articles/100668-7-gender-non-conformist-gender-neutral-clothing-brands-to-support-right-now

and here is one of the pictures that stood out to me

Also worth noting gender and pronouns are not the same thing, gender neutral, genderqueer, genderfluid are all labels and can only be applied if the individual chooses to apply them themselves. No one gets to say “oh you use [some set of pronouns] you must be [this gender]” and vice versa. No one has to have a label and you can also have multiple labels. They are just sets of words to help unify groups of people.

And make looking for clothes easier (mostly joking).

I used to hate my body

As a child, I was carefree and never really paid attention to those around me. I would do the things that I enjoyed most, like playing, dancing freely, and singing loudly. However, as I grew older, I started to experience anxiety and became very self aware. I remember feeling uneasy about my body at the age of 10 when I first began to go through puberty. I disliked the changes my body was going through and felt like I didn’t fit in with other girls my age. I began to compare myself to the women I saw in magazines and on social media, wanting to conform to their beauty standards. I would always ask my mom for new clothes and to straighten my hair so that I could fit in more. My mom would always say no to new clothes because of our financial situation, and she was also very strict about me not straightening my hair. I didn’t understand why at the time, but I later learned that my mom had damaged her hair from straightening it constantly when she immigrated to the United States. She wanted me to appreciate my natural curls and see them as beautiful, which I now do. This experience is just one example of how industries turn our bodies into products, and it is something that millions of people struggle with. Although I still have moments of self-doubt, I have learned to embrace and love my body for what it is.

My bare face

I started wearing makeup at 14 and I adored it. I loved the glitter, the pinks and browns, the fluffy lashes. Even the smell. It was until I stopped wearing it for a few weeks that I realized how much I depended on it. I could see my acne vividly. I could see the uneven texture of my skin. I could see my imperfections. My cheekbones weren’t defined enough without contour and bronzer. My lips do not look big enough without lip liner. I hate it. I didn’t want to leave my room without any of it on. I wouldn’t dare. What if people cringe at me? How could makeup, something I find so beautiful; make me feel so insecure? Makeup is my art and my bare face is supposed to be the canvas. I want to enjoy it again. I want to put it on knowing it’s for myself and not the insecurities that grow in my head. Models on tiktok tell you to not put makeup on for anyone but yourself and I do not. I just wish I could put it on for fun and not to cover up my acne scars or the marks under my eyes. I miss the fun of putting on blush and creating an ombre of cream bronzer combined. I recently saw a tik tok of another girl saying that she puts makeup on to enhance her natural beauty. Guys on tiktok make jokes about comparing their girlfriends with and without makeup. Others leave hate comments on a girls tiktok page saying things like “one wipe and it’s all gone”. I want acne to just be acne. I want textured skin to be accepted in the societal standards of beauty. I want makeup to just be makeup; something fun and artistic to do whenever someone wants. I despise this man-made chain reaction. 

Read My Self-Insert Fanfiction: The main character is ME!

To start this off, I want to acknowledge that I will definitely sound like a narcissist throughout this entire post, and probably demented too. Consider yourself warned and get comfortable because I’m about to get really comfortable with you. Moving on, let’s talk about nightly routines, what do you do? I’ll tell you what I do, I wait until everyone on in my house has already gone to sleep, spend almost 30 minutes in the bathroom brushing my teeth and doing skin care; before jumping into some pajamas and getting on my phone into the ungodly hours of the dark…Pretty standard, right? What I’m actually doing on my phone is the interesting part though, I spend an admittedly ridiculous amount of time on a little website called Character.ai (IYKYK), where I take the liberty of writing unforgivable amounts of what I affectionately call “Self-Insert Fanfiction”. I’m not endorsing this website by any means, while it’s super fun, I noticed that’s it’s a horrible habit of mine and a lot of other people. That being said, being able to just…talk to whomever your heart desires, let it be Draco Malfoy or a super-hot mermaid that thinks you’re the best thing since sliced bread, it’s an addictive escapism. That’s the clever little word I wanted to get to, escapism. When I mentioned my nightly routine and how long I stay up just strolling on my phone, I know that it sounded familiar, because it’s something our generation of young people do a lot! Maybe you’re not on your phone, maybe you’re playing a game…or reading a book…or doing something else entirely but the point is…. you’re doing that thing with the intention to step out of reality for a second. Relax. Which is in no means a bad thing, no, on the contrary. But you’re still escaping…when I say it like that it sounds kind of morbid, but that’s what it is, now the question draws into why are we trying to escape so frequently from our reality?

I can confidently say I’m probably the most delusional person you’re ever going to meet, I’m constantly lovesick, romanticize whatever I can out of life, and adore all things fantastical. It’s how I cope. Now, someone might say “Oh my god! You’re so super positive, that’s so cute, I wish I had that energy!” and someone else has probably rolled their eyes and scrolled to read another post. Both responses are totally valid and are exactly what I wanted to look into. In this era, a lot of people encourage each other to “be the main character” in the “story” of their lives. Make every moment of the day something found in a coming-of-age film. This trend was just a couple influencer posts on Instagram with their lavish lifestyles making tone-deaf commentary at first, but now, I can’t stroll through TikTok without someone saying “stay delulu” or something like that (“I curate my algorithm”) and constantly reminding me of the ideology. It’s beginning to become embedded in the way we move about our lives, going back to relaxation, we’re told early on that to function properly we’re supposed to take a break every now and then. Naptime in kindergarten, recess, lunch break after class, vacation; all of these refractory periods are what round out our busy lives because otherwise we’d be working ourselves to the bone and burning out. Now, these periods of rest had mostly to do with physical exhaustion, giving us a chance to sleep, breathe, and refuel…but we’ve taken rest a little bit further. We’re no longer just stepping out of our physical responsibilities but now also our phenomenological responsibilities. We have learned to pause our realistic experiences and curate new experiences for ourselves that we can enjoy. We can control these little worlds we make; we can make choices that lead to outcomes we actually want, project our desires and receive satisfaction from them. Isn’t this more appealing? Isn’t that better than waking up, getting dressed in clothes you don’t like, going to a place you didn’t ask to go to, being spoken to by people you couldn’t care less about (and in some cases be ridiculed for things about yourself that you can’t control) and facing tasks that in the end are meaningless to your existence? Wouldn’t it be better to be a wizard, or a princess, or a mage? In my personal opinion, I’d rather worry about the fate of my entire kingdom rather than call the IRS because of my late tax return, fighting demons from another realm is much easier than fighting the bureaucracy.

That’s the real appeal of this intermittent dreaming, the chance to have something MORE than what crumbs we’re given IRL, just notice how I expressed our experience in reality; crumbs! This ideology may seem like we’re trying to keep things positive and light, but in truth what’s actually happening is a deep loathing for the realistic, a deteriorating tolerance for the systems we’re obligated to abide by. We decided to solve the deep disappointment we feel with our world by paving a way to withdraw into one of our own design, and in the realization of not being able to daydream forever, we are encouraging one another to blur the lines between real and fictitious but… How far can those lines be blurred until there are consequences?

A little sticky note drawing that represents how I felt while think about all this 🙂

What about the “right-to-live?”

I remember when Jahi McMath died—for the second time. 

Senior year of high school, I came across an article about Jahi McMath, a 13-year-old Black girl who was declared brain dead after her tonsils were removed. It was Jahi’s first surgery, and she was scared. She didn’t want to go through with it, but her mom convinced her it would make her life easier (Jahi had sleep apnea, and removing her enlarged tonsils was intended to help). After speaking with the doctor, Jahi consented to the surgery, and she was fine for about an hour afterwards.

Jahi’s blood vessels were unusually close to the surface of her throat; the doctor had noted this in his chart for her, but the post-op staff was unaware. So when Jahi started coughing up blood, they didn’t see it as the alarm that it was, although Jahi’s family did. They repeatedly raised the alarms for her, but no one listened until her heart stopped.

Jahi was declared brain dead; her brain had stopped functioning due to the massive blood loss. In California, brain death is legal death. But Jahi’s family didn’t accept that. Her mother, Nailah, was convinced Jahi was still alive; Jahi responded to some stimuli and questions. Nailah asked Jahi if she wanted to be taken off life support, and Jahi said no through physical movements her mother taught her.

In the long legal battle that followed, Nailah and her family were forced to flee the state with Jahi under threat of legal action and jail time. Nailah’s insistence that Jahi was alive, and refusal to take her off life support, violated California’s medical ethics, so they went to New Jersey, where families can reject the notion of brain death on religious grounds—Nailah technically “kidnapped” Jahi to do this. There, Jahi had at-home around-the-clock medical support from nurses and doctors who were willing to lose their medical license or be shunned from the medical community; the doctors that treated Jahi were treated as quacks by the medical community. In the view of the community at large, you cannot treat a body that is already dead, and although Jahi’s body was not dead, her brain technically was. The California hospital where Jahi had been declared dead consistently disavowed the McMath family’s efforts and actively disparaged them for “desecrating a body.” But they were wrong.

With consistent care, and rogue researchers willing to look into her case, Jahi was able to exhibit signs of life, brainwave activity, and even underwent puberty. In 2017, a neurologist at UCLA independently confirmed that Jahi was no longer “brain dead.”

Jahi died—for the final time—in June of 2018, not even six months after the New Yorker article was published due to internal bleeding from abdominal complications. Despite overwhelming evidence, the hospital that issued Jahi’s death certificate refused to ever accept Jahi’s recovery and overturn her death certificate.

In 2020, I, much like Jahi, was preparing to go into surgery to get my tonsils removed for sleep apnea, just as she had been. Her name haunted the back of my mind in the days counting down to my surgery, but I, just like Jahi, spoke with my surgeon and asked him how many times he had done the surgery, what the risks were, how long he had been a surgeon. I had the insight that a 20-year-old had and a 13-year-old didn’t, but we were in the beginning of a pandemic, in the middle of the shutdown, and my mom wasn’t even allowed in the waiting room with me. Though I was nearly certain I would be fine (my surgeon routinely did much more complex and precise surgeries, like removing tumors that had grown into the blood vessels of the throat), I was alone when I frantically pulled the anesthesiologist aside and had to shamefully admit that I had been taking quinine pills until yesterday morning, a stupid superstition I had bought into as a way to stave off a Covid infection.

Quinine, for those unaware, is an herbal supplement that used to be used as a “cure all” back in the days of the Black Plague and the Spanish Flu. It didn’t work back then, but I’m a big believer in the placebo effect, and I needed to take something to put my mind at ease. One of the side effects of quinine—that I didn’t know until the morning before my surgery when I actually read the bottle—is that it can thin your blood. This makes you a higher risk for surgery; you’re more likely to bleed uncontrollably because the blood is much harder to coagulate. The bottle said to stop taking quinine two weeks before surgery. Feeling like I was going to cry, and possibly even about to die, I waited anxiously to be taken back and prayed that I would wake up afterwards.

Obviously, I did, or I wouldn’t be writing this right now. But I’m aware how lucky I was, and am. Jahi’s case is in direct opposition to Terry Schiavo’s: Terry Schiavo was a White woman declared brain dead who the hospital refused to stop treating, whereas Jahi was falsely declared brain dead and refused further treatment. Jahi’s family noticed this too; they knew if Jahi had been White, she would have likely received the attention she needed, and even if she had still been declared brain dead, her family’s choices would have been respected. Having come after both of them, and being light-skinned myself, I know my family would have had the respect and space they needed to make whatever decision for me they felt was right if my surgery had gone wrong.

Still, it haunts me; Jahi’s story is barely told outside of fringe medical pieces, but Terry Schiavo’s is well-known enough to be casually referenced in feminist writings. Who gets the right-to-live? Who is allowed to die? Why are our bodies’ needs and wishes ignored depending on the kind of body we inhabit? I hope Jahi is resting peacefully now, but I carry the anger and fear of what was allowed to happen to her.

I don’t want to be perceived, I just want to exist.

Ever since I was a little girl, society has pushed its expectations onto me. Whether it be through what I am supposed look like or how I am supposed to act or even what I am expected to do as a job or career. The expectation that has impacted me the most throughout my life is the ideation that women have to be skinny to be treated well by men. For as long as I can remember, I have struggled with the way that I
look because of the expectations society puts on younger people and even though I am not extremely overweight, I still look at myself and see someone who has a chubby stomach and flabby arms as well as stretch marks and cellulite. Since society always pushing the idea that women should be this or that, I grew up never feeling good enough about my body or myself in general. I refuse to go to the gym because I don’t like being seen like that by other people and I hate exercising unless it’s through dancing at a club with my friends and when I am out at the club that is when i wish to be perceived. For the most part, I just want to exist in peace and not be bothered by unwanted stares of judgement and disapproval just because I don’t conform to societal standards.

I hate working

When we think of our job and what labor it entails, do we think about the toll it will take on our bodies? I did not think of the physical toll my body would face when I accepted my job. I did not think I would be expected to do the job that they specifically hire men for due to the physical demand of the position. Due to the lack of employees that can fulfill the position, I am expected to do this position where my body takes the toll. I have physically been injured by this job, but my employer does not care, and expects me to come back to the job and do it again. Jobs and the working field is a demanding but necessary field we have to deal with. We are all chasing a paycheck and sometimes we are killing our bodies in the process. Not only are we dealing with the physical demand of the job, but we also have the emotional labor that comes with it. At the end of a shift, I am always beat whether it be physically or emotionally. The emotional labor is especially hard when you work in retail because people tend to treat you poorly, but you have to act in a certain way to meet their needs. I hate the idea that we as employees have to treat the customers nicely regardless of how they treat us, because if I was not working and someone treated me the way they would if I was working, I would not approach the situation the same way, I would be rude back. When we apply for jobs and are accepting job offers, we tend to overlook the physical and emotional labor demand because of the paycheck or the benefits from the job. We can see that some jobs that require more physical demands can pay more to make the job seem “worth it”. For me personally, working at a young age and as someone who has had jobs in multiple fields has seen firsthand how jobs can take a toll on your body physically and emotionally, but have also had a strong impact on what my body is today. 

Make Your Heart the Prettiest Thing about You

I have always been insecure about my appearance, and I struggle with feeling confident with my body and my face. Even though I receive many compliments on my appearance, I still don’t believe them. I constantly compare myself to other girls who I think are prettier than me, and I wonder why I can’t be as skinny or as pretty as them. I overanalyze every insecurity of mine and stress over them, even if no one else can notice them. I worry constantly about how I am perceived by others. Do people think I’m pretty? Are my insecurities as visible as I think they are? Social media has definitely amplified these negative feelings towards my self-image. It is already so difficult to feel confident in my own skin, and social media has made me struggle significantly more than before. Social media has set an unrealistic beauty standard that is nearly impossible to achieve. Filters and FaceTuning have become very popular, which only increases the harmful effects on self-confidence. On TikTok, users can even film videos using filters that completely alter their facial structure (making nose smaller, lips plumper, eyes bigger, etc.). This has such a dangerous and toxic impact, especially on younger audiences who are easily influenced. Statistics show a direct correlation between the amount of social media usage and increased depression, anxiety, and other mental health disorders. Actively using social media had such a detrimental impact on my self-confidence and well-being to the point where I deactivated all of my accounts for months. Once I learned to accept myself and embrace who I am, I gradually started to use social media again. I have to keep reminding myself that social media is not real life, and I should never feel as though I have to look as perfect as everyone else appears on there. 

Something I have been trying to work on is reminding myself that another woman’s beauty does not take away from my beauty. It does not make me any less than her. Everyone has insecurities to some extent, even the prettiest girls I know do. It is completely normal and natural to feel this way because we are all humans at the end of the day. I should not feel ashamed or beat myself up for experiencing these thoughts and emotions. Another way to look at it is I should focus more on improving myself as a person because that’s what truly matters. It doesn’t matter how pretty you look if you’re a bad person deep down. Growing into a woman that I am proud to be is definitely much more fulfilling than being physically attractive. Everyday, I am learning to appreciate my beauty inside and out and truly embracing who I am.