writing anxiety or inattentive adhd? what’s really keeping me from starting, completing, and following through on mentally complex tasks

CW: ableism

Very recently (as of yesterday!) I was diagnosed with ADHD, inattentive type. This subtype of ADHD is characterized by the following symptoms:

• Failure to pay close attention to details
• Careless mistakes
• Difficulty maintaining sustained attention on disliked tasks (e.g. homework)
• Losing important items (e.g. school materials, keys, cell phone)
• Not seeming to listen when spoken to directly
• Not following through on instructions and failing to finish schoolwork or chores
• Trouble staying organized
• Getting distracted easily
• Being frequently forgetful in daily activities (e.g. brushing teeth)
  Source: Child Mind Institute

I’ve occasionally thought that I might have this subtype of ADHD, especially Winter 2021/Spring 2022, which was the height of my executive dysfunction impairment throughout college. My functioning was so impacted that I literally had to barter spoons between brushing my teeth and taking a shower over going to class. I was struggling so hard, and deeply wished I had the support structure in place so that I could be living some semblance of a life. Instead, I was struggling to find the surface, let alone keep myself afloat.

Inattentive ADHD most often is found in AFAB (assigned female at birth) folx, and for that very reason, overlooked. Because why study or pay attention to us? lol. Other than my unqualified hunch and the fact that Ritalin, a common ADHD medication, did not work for me as a stimulant (which is how it should function for non-ADHD folx) I didn’t believe that I had much of a case, and didn’t want to go through the arduous (and expensive) process of trying to get diagnosed as an adult. But I was 100% sure that something other than bipolar disorder was affecting my executive functioning, and so I sought out an assessment for learning disabilities so that graduate school won’t be more difficult than it needs to be.

(As a random aside—I am pretty sure that my twin has hyperactive—impulsive or combined type ADHD, many people have suggested this to my father growing up but he of course never got her tested, and it’s totally her prerogative now right? but interestingly, twins are more likely to have adhd and identical twins [my twin and I aren’t identical] are even more likely to develop adhd if the other twin develops it! Learned about this in my disability studies in education class, but this healthline article also mentions this fact!)

I had had an assessment last December and was told that I did not have any learning disability or any attention deficit issues but that I may have some delayed processing and “superior verbal skills” which separates me from my peers and is likely the cause of the isolation and loneliness I experienced growing up. I did not accept those results however, because when I pushed back on the psychologist’s determinations and asked her to further defend her conclusions her response was that I did not struggle at a severe enough level as someone with a learning or intellectual disability would have, even when taking into account masking, as evidenced by my attendance at an elite university. My own therapist has said similar things to me as well. So her assessment was entrenched in ableism and I knew I needed to find someone else.

The doctor who gave me my most recent diagnosis picked up on things that no other provider or assessor ever has, and didn’t use an institution from which I earned my degree as a disqualifier in my diagnosis. Because yes, it is possible to be disabled at elite institutions. In fact, there are many of us here, and we struggle to get through. The last thing we need is for people to invalidate our experiences because of a stupid four letter word.

And I’d like to talk about that struggle a bit, and what reflecting on this diagnosis has revealed to me so far. I’ve talked a bit about how coming from a low income, under-resourced educational environment was the building block for the imposter syndrome I developed attending an Ivy League University, that most often manifested itself as writing anxiety. For a very long time I thought that my anxiety was caused by the fact that I had allowed self doubt to cloud my perception of self, assuming and believing that everyone was more qualified and produced better work than I did because they were more intelligent, came from a more privileged background, or both. I became afraid to show anyone my writing, asked for extensions for even the shortest of assignments, and just couldn’t seem to meet a single deadline (and that’s the story of why my thesis was two months late lol). And there’s truth to that, for sure. But what if my writing anxiety is ADHD in disguise?

I talked to my therapist fairly recently about my writing anxiety and how I hope it doesn’t become too detrimental to my grad school application process this season. He asked me what causes the anxiety and what does it feel like? And I said it’s the pressure of knowing there’s a task and not knowing if I have it in me to complete it, so I avoid it until time is past due, just to find out I was capable all along. And I realized today, reading through and watching videos on inattentive ADHD, that the experience I’m describing is actually a symptom of inattentive ADHD: avoiding activities that require sustained mental effort. Whether it’s writing an essay, doing readings, or completing math problem sets, all of these tasks required focus for substantial periods of time. In K-12, I liked most of my classes and was able to overcome the desire to break concentration, or to cope with it, while doing my homework. I may have watched youtube videos and spent hours on BuzzFeed quizzes or on GoodReads, but at the end my assignments (as long as I remembered to put them in my planner) would all be completed on time. However in college, I was very early conditioned to think that I was less intelligent than my peers and a bad student (thank you math department) despite all the hard work I was putting in, and school became less enjoyable. I even stopped reading for fun! So when school isn’t interesting….it is very hard to motivate myself to do the work.

And in my upper classes I was able to finally focus on material that mattered to me, but by then I had already been brainwashed into believing that I was a difficult student, triggering my anxiety related to anything school related. Because I switched into a paper-writing centric major, my “writing anxiety” was born. But interestingly enough, when I wrote things for me (like on this thought space, in my iPad notes, for AUREA, poetry) that same anxiety wasn’t there. It was just for academic and “professional” writing. And I’m starting to see that the anxiety is not about the act of writing itself, but in making myself work through things that require a lot of effort and that academia conditioned me to dislike. Even projects that I really enjoy and am excited for, like my senior thesis, became a hot ass mess because my brain still believed I could not write.

My grad school application season is just now beginning, so hopefully becoming aware of this provides me the opportunity to change the tide on my relationship to writing as I go on from here. Wish me all the best, and protect your peace bbs.

hair dysphoria

about a month ago, I got my hair braided and the stylist would NOT stop complaining about how straggly my ends were. I knew that I was long overdue for a trim, but I’m too anxious to do it myself and most stylists these days overcharge for the service nowadays. I don’t think it’s a good move for a stylist to complain about a client’s hair anyways—you can give me constructive feedback and advice on my hair care regimen to improve the health of my hair, but you don’t have to bash me as a person. Makes me not want to come back to you. I already tend to hate the Black salon space because it’s full of nasty cishet energy and personal triggers, but it’s hard to find queer/trans friendly stylists that are knowledgeable about my hair type, especially when you are on the move, like I was (did a lot of traveling in May and June). Strands for Trans is a good resource for hair cuts and styling if you have straight or wavy hair, but if you have kinks and coils like me, there’s a dearth of representation. One day, maybe. One day.

I allowed this lady to charge me $20 for what should have been a $5 or $10 add on fee to “trim” my hair. Except, homegirl took off about 2 inches!! Homie that is not a “trim” that is a CUT. I understand I have damaged ends, I’m well aware of that (the hair is on my head, after all). I was tryna grow it out and cut it once my hair would be at a length I was comfortable at post-mini chop. That’s why it’s always in these protective styles. Trying to limit manipulation as much as possible. I shouldn’t have tipped her (she didn’t even do my hair the way I wanted) but I did. Bleh.

Because my hair was going into braids I could ignore how unsettling having so much hair cut off would be, but the braids had to come out at some point. My hair is shorter now than it was at the beginning of my “natural hair journey” five years ago, which could be the shrinkage (she cut my hair while it was blow dried) or maybe she took off more than I realized. Either way, I don’t fuck with it.

Now don’t get me wrong, I do not have any internalized issues around having short hair as a Black person. I don’t give a fuck about all the bullshit about dark skinned Africans not having any hair, not being able to grow our hair, or any of that bullshit. And I don’t believe that long hair equals being “more” beautiful (I don’t even believe in ranking beauty). Just for me and my personal aesthetic and gender expression, long hair is what I want. I got floor length lavender box braids for a reason. Long hair is what suits me at this current stage of my life.

I’m not going to deny the fact that I was socialized as a Black girl with “difficult” hair cuz it was thick and coily and nappy. Black women, girls, and femmes must *always* have hair that’s “presentable” and we get policed by our community and those who uphold European beauty standards (not mutually exclusive groups) if our hair isn’t always on point. I have gotten ridiculed and shamed as an adult and as a kid for entering spaces with my hair in its natural state. That does take a toll on your self esteem and you’ve got to work to unlearn that. I have a positive relationship with my hair and care for it. At the same time I know that society sees my natural hair and infantilizes their view of me and my capabilities as well as masculinizes me, which is not always what I want.

Though I have cultivated a positive relationship with my hair, I still struggle to find ways of styling it that is congruent with the way that I see myself. One day I will do locs, but right now I like the shape of my free coils. Braided styles are sometimes the move, but other times I wish I knew how to modify styles popular in the natural hair community to fit my personhood. It can be hard to not compare myself to my peers who weren’t raised to see their hair as an enemy, and have to deal with disability limiting the spoons that I have to spend on hair styling.

This is to say, I’ve worked really hard to get my hair to a place where it doesn’t cause dysphoria due to its length. My hair falls out due to stress/depression and Poly-cystic Ovarian Syndrome (PCOS), and adding on testosterone probably does not help with that. My hair became damaged because I got it colored last Fall by another stylist that I would never go back to. This lady probably thinks she did me a favor, chopping off so much of my hair (for an exorbitant rate mind you), but she’s relegated me back to a space of disappointment. I will be as nurturing and caring for my hair as I have ever been, but it’ll be another year or so to gain back what I’ve lost. And that makes me really sad and frustrated because it should have been up to me the state of my hair.

As I deal with the dysphoria the next few months, I’m reminded to center the healing and growth of my hair.

protect your peace bbs.

05.17.23

Above Greenland, 7:47 pm, on my way to Hong Kong

thoughts on unmothering, anger, frustration, disability, familiarity, boundaries, sharing (information), intimacy, and family (lol)

cw: SA mention

I’ve got a headache because I’ve barely slept in 48 hours and am off food and meds schedule. I don’t know where my metformin is. but it’s okay, we gon do with what we got.

for very many days I have been trying to manage frustration and anger with gratefulness and appreciation. I did not expect graduation celebrations to go down like this. within a few hours of being alone on a plane chock full of (mostly) unmasked strangers, I have been (slowly) dissipating the anger and getting to a place of clarity. I’m not completely there yet (imma need a helluva more time than four hours) but lucky for me I’m on a 15 hour flight to another continent 😎 (smiling with sunglasses emoji) so time we do have.

My mother and sister wanted to celebrate me, but what I’ve learned from this experience is that they are very very far from understanding me (and my people) and that there are huge gaps and understanding of what blood family should mean to each other.

and I’ve written a bit about blood family before, but in my eyes, being blood is not a full access pass to who I am or my life. connection to me is earned through trust, which we do not have with each other. not on my end.

I wanted a disability friendly gathering, and it didn’t happen. the details are important in sorting out our issues, but not relevant to the words I need to write out in this moment since I cannot vent about it to a trusted friend or partner, so they won’t be here. I know the effects of this on my people and I’m really sorry that happened to all of them.

I know my twin will say that I was lying, and I was lying to my mother in the car, but that lying is what keeps me safe. What my twin and my mother didn’t understand (and still don’t) is how important the way things need to be done for me, or my reasons why. Which I understand is also difficult for them to know because I am not open about sharing, but that’s because they have proven to me in the past (and also in this current situation!) THAT THEY ARE NOT FULLY LISTENING TO ME. 

I’m going around in circles, so let’s start with the mother wound. I came across this concept in a class, Writing About Family, I took summer 2020 online with Professor BriAllen Hopper. I believe it was a queer Latina writer, Vanessa Mártir, whose work we read about unmothering. I know my mother loves us with all of her heart, I know life circumstances weren’t fair and my dad was an asshole, but truth is, she was not directly in my life for about 10 years (longer, if we think about queer time…ah, my not finished thesis). She moved from Philly when I was 7 or 8, and the last time I saw her in person was summer 2010. And the same things that was true when we saw her at graduation 2018 are true now. I understand that for her this was the first time she was seeking her kids again in so long. And she thought/thinks that because she gave birth to us and was there in our early years that she knows everything that there is to know about the foundations of who we are. but she missed out on formative experiences. there are 8+ years of things she has no idea about and will never know about unless she hears it directly from me. and this part of what I told her in the car today was true. the best way to understand me is to know the people I surround myself with and choose to be in community with. and I tried to do that the best way I knew how, by telling her about the two most important people to me at that time. And she wanted to reflect on the past and why had I never sent her a Mother’s Day card or why I didn’t include her in my graduation speech. And it all boils down to this fundamental misunderstanding: she thinks she already knows me, and I know she needs to get to know me. I saw our re-connection in 2018 as establishing a new relationship, and she saw it as continuing a relationship she already had. this will be very hard for her to hear one day but that relationship was dead by the time we reconnected at high school graduation. She was a literal stranger to me. She just happened to be a stranger that I had a blood connection with and because of that reason, I was willing to share so much more of myself than I typically would have.  But she needs to understand that for me, that was the opportunity for a beginning, not a continuation of something. 

I tried my best for two years with the skills I had at the time to share who I was and who my people were. I am a much more effective communicator now. I definitely could have done better. But by 2020 I realized that things were not compatible for me. So walls permanently went up as protection until I got to a place where things could be sorted through. And actually, now was not the time. I was not ready. But the stupid thing about being a queer gender-fluid person having to exist at the intersections of queer/trans/crip/AND straight time is that sometimes I have to do things according to the straight time world, like celebrate occasions like graduation with bio family. And so things were forced to happen at a time when I was not ready.

To get into some specifics that are not insignificant but also not central—disrespect came up on the last night we were together, and that also comes from how we see our relationship. My mother believes that because she gave birth to me she has a certain level of authority over me. And when I enter her space/her household, for sure. But in MY space??!! Fuck no lmfao. I have been managing my own money since I was 16 (younger than that really) and living on my own, paying my own bills, since I was 18. I had to mother my two siblings and other people’s kids since as young as 8. I literally got sat down at 8 by my aunt and told that because I was the oldest I had to be responsible for everyone. I’m doing homework help and making breakfast and dinner and remembering doctors appointments and making sure everyone’s clothes and medications and whatever else are in the duffel bag that we lug around from auntie’s house to stranger’s house because we slept in a different place every night because my father had no one to take care of us. We all grew up too fast, and that is the byproduct of growing up poor in a metropolitan area in an immigrant family in the U.S. I have been on call for mental health crises and have managed my health emergencies and continuing disability ON MY OWN. I have been sexually assaulted and provided support to other survivors (including my twin). I provide housing and food for trans people, I support unhoused folx. I’ve travelled internationally on my own. I’ve had to learn how to become an advocate for myself. I have been doing so much shit solo and AT MY BIG AGE nobody is telling me what I can and cannot walk outside wearing. No one can tell me how to wear my hair. No one can tell me it is unsafe for me to be walking around outside at midnight. If you don’t like the way I do things at my place, get out. You don’t have to be here. My mother told me we are more alike in ways I don’t even understand and that is not true. I actually know quite a lot about the ways we are like each other. But that does not mean she can order me around at my spot. That’s not how things will work. And so what she saw as disrespectful because I did not follow her wishes was only the tip of the iceberg. I could’ve said fuck outta here, but those words were nowhere on my lips (or on my mind) because i DO have respect for her.

Writing this part made me more agitated so going to try and decompress by watching something (though I wish I could be reading smut 😭😭😩)

hate-watching, and why I hate the social scene at my university

cw: eating disorder mention

I’ve never been the type of person to “hate-watch” or “hate-follow” someone. I do the exact opposite—I block and delete and avoid so I don’t have to come across people I don’t fuck with anymore. I don’t know how anyone gets any sense of satisfaction from getting news or content or information about a person that draws up feelings of hatred. Not how I want to be spending my time.

But I accidentally found myself doing that exact thing this evening, hate-watching a show for a dance group I kinda-sorta-used-still am (?)-a -part-of. I had volunteered to be an usher so that I could watch the show for free. I had signed up for this specific showing because it had ASL interpretation (which could have been better integrated, accessibility was definitely an afterthought at times in this production, but that is not the focus of this piece) which I thought would be cool and was really excited to see (I am learning ASL and as a hard of hearing person ASL access is becoming increasingly important to me). I left this dance group at one point for two reasons. One, because it was failing at its mission to be truly inclusive of dancers from all backgrounds and levels of experience, including no experience. The board that had been voted in at the time was unfortunately a clique of friends and they were more concerned about making sure all the pieces were well-put together and that they got to star in as many as they wanted, and so it became not fun if you weren’t already an established dancer or connected to one of the board members. The second reason was that there was a man, a cis queer white man, who I had trusted and who caused me a lot of interpersonal harm that I felt incredibly unsafe around. Unfortunately for me, not only was he a part of the clique and the executive board, and having the privileges and power that comes with being a normatively gendered cisgender white man, but he was incredibly charismatic and the type of person that people who tend to not look too deeply into a person’s character (say, shallow college students for example) would never think to question his “goodness” or “niceness,” especially not from the angry darkie genderqueer negro. Who would ever choose me over him?

He is not the only man to make feel unsafe on this campus. While most of them are gone now, the spaces they used to occupy are still associated with the tensions and anxieties the thought of them bring up in me. I avoid dining halls, extracurriculars, former mutual friends, dorms, and hangout spaces, all in an effort to protect myself from them, or memories of them. And as this university has long kept me on the margins, most of the time I am successful. But then there are nights like tonight, and I begin to question all over again if I can ever be safe here (the answer is no, btw. it’s not possible, ever).

But maybe I should tell you why I first joined this dance group. When I got to college, I was looking to explore myself. I grew up in an authoritarian household and self-expression (among other things) were limited. I wanted to be an individual, and try new things. I auditioned for dance groups and poetry groups and didn’t get in. But this was the largest dance group on campus, no auditions, and it had a beginner friendly dance! My choreographer was from Zimbabwe! Getting to dance with other queer people, with other Africans, to “our” music, was really fun! Exciting! I was still quiet and reserved, but they made a place for me there. I got to rock it out to Beyoncé with a bunch of people cheering me on no matter what. It was a very positive and supportive environment, and I’m glad I had that space and opportunity my first year.

As much as I really enjoyed dancing with this group, it was really hard to maintain. People at my university basically compete for who can be involved in as many different extracurricular or projects at once. I was limited by my mental health, undiagnosed disabilities, and my academic struggles. And also, my family trying to control me from afar. so my sophomore year, I lost access to that dancing space, unwillingly. And that is what spurred the feelings of hate as I watched the show tonight. because it reminded me of how I had to quit all of my extracurriculars because one of the medications I was taking made me randomly black out and the other made me sleep 14-16 hours a day. I barely had time to attend class, let alone do home work and show up to dance practice. I was forced to take a reduced courseload, when I really shouldn’t have been enrolled in school that semester at all. But I was homeless, and school gave me (temporary) housing, and so I was stuck being isolated and lonely. I couldn’t really socialize because my eating disorder was so extreme at that point that eating in front of anyone gave me severe panic attacks, so I had to eat alone, in my room, out of sight. It’s no fun to only be able to hang out with a friend 1-1 in their dorm room, the only space they cannot be triggered, between the hours of 4pm and 8pm on Friday or Saturday evenings. I couldn’t go out to parties, late night hangouts, or do anything spontaneous. I couldn’t get lunch or dinner, and when I wasn’t in class, I was studying. And even with such a strict schedule I was mentally unwell, rapid cycling, binging and starving, hurting myself. It didn’t matter that I wasn’t actively a part of the dance group anyhow, because it had become a bunch of white and non-queer people voguing because it was “trendy” or five Beyoncé songs in a row. The shows were kind of a mess. But there was still the feeling of missing out.

Then the pandemic hit, I took time off from school, and when I returned, nothing was the same. the pandemic was various levels of hard for everyone, but I think it was a particular level of hard as a disabled genderfluid kid living in a city where I knew no one, in an apartment I couldn’t afford, with someone who didn’t understand me. I came back wanting to bring jersey music and afropop into the dance space, but nobody knew enough about it, and didn’t care to listen. I wanted to bring in accessibility, but no one cared about that either. I tried to lead a workshop combining both of those interests, but had low turnout due to my studio reservations time being changed at the last minute. It didn’t matter.

then we had a new board voted in, one of the presidents being an international student who revolutionized the group and made it a worthwhile space to engage with again. i personally wrote him an email thanking him because i felt like the group was returning to its center. and then, tonight’s show, while mostly full of good acts, had an all non-Black group dancing to Lil Nas X’s
“Call Me By Your Name,” and other songs by Black artists. The group always borders on cultural appropriation in the way that they are obsessed with Black music but most of the dancers are non-Black, or don’t have even a single Black dancer.

Another aspect of the show that stirred up unpleasant feelings in me is noticing the role of Black women in these performances. I really love to see Black women being their most beautiful selves. I saw many people who I know would never be able to remember that we were ever in the same original class being confident and sassy and beautiful on stage. and it reminded me of how exclusive Black women are on this campus. The relations between Black students of my original class and above was not great, there was mad beef, mad sexism, mad colorism, mad transphobia, mad classism, mad elitism, and I couldn’t fuck with any of them (or, more aptly put, none of them could fuck with me). I don’t speak often on my identity as a Black woman because it is contentious. It is contentious first of all because I never had access to black girlhood. Dark skinned girls are always masculinized, but being noticeably extremely hairy from the age of 6, I was constantly tested and taunted and referred to as a “man” or some other non-woman entity, like frog. my fatness, my hairiness, my lack of social skills made me the odd one out and so I could never be a black girl. I was an it. This happened at home, at school, at church. When my high levels of testosterone (which would eventually turn into PCOS) had me growing a beard at 14, my Black feminity was irrevocably removed—there was nothing I could do to change that fact. While I have always been genderfluid, the gender I ironically feel the most insecure claiming is the one that I was assigned on my birth certificate. Because even though that’s what that piece of paper says, I was never treated like a Black girl or a Black woman.

I’ve always had trouble identifying with and relating to Black women and girls, especially within my age range, because I have a lot of jealousy. Some parts of it is colorism and texturism, but most of it is the fact that even if the validity of their gender was ever to be questioned, there would be someone to back them up. But no one has ever come to defend or affirm my womanhood. I’ve been ridiculed multiple times, but no one has ever respected my womanhood. And if I can not be in community with Black women, then there is no viability of community with women of other races.

I wanted to change my experiences when I got to college, but it was hard to be in community with other Black women when I’ve been told that I’m “letting myself go” because I don’t walk out of my house with a full face of make up and my body dared to gain weight. For the Black girls who had gone to boarding schools or private schools or just really well-to-do public schools, this majority white institution was the first time they had ever experienced Black community—and it was with a bunch of other Black women who were considerably lighter than a Hershey’s bar, and came from economic privilege that I had never imagined. But I got called out for being divisive by naming class divisions, or an alternate experience of this place—the shock of coming from a place where everybody is Black and migrating to a place where most people are not. It didn’t help that my Black womanhood made other Black women uncomfortable because it involved he/him pronouns and a beard, that it was not static but temporal. In their eyes I was better off with the whyte gays who got “that complicated gender shit” instead of trying to complicate their space and detract from it. And that made me further isolated and angry, creating emotional roadblocks that I don’t think ever can be worked through (especially as my time here comes to an end). When the former BMU president was charged with sexual assault allegations, I found myself feeling numb and disengaged, unable to drudge up any scrap of support for cis Black women on campus being harmed, because nobody cared when it was us genderqueer folx experiencing harm from people who are supposed to be community. It was not a grudge per se, I just felt like I could not be connected to that fight.

I’m writing these words here because I don’t know anyone else who would specifically get it. Like, I came to college with a lot of hopes and dreams and aspirations. But because I did not have the support and care that most other people have (to some degree) I had to settle with the fact that I was never going to fulfill my full potential here. And the closer I get to graduation (which I am not going to, for all the reasons stated above and more) the more real that gets, the harder it hits home for me. Like, that dance group is not accessible to me because of my disabilties, and it was never going to be. It never wanted to be. Black women never wanted to be in relationship or in friendships with me, and they were never going to. I am not one of them, they never saw me as a community member, and they aren’t looking to include me. I am not desired by them or by that dance group. And that goes for almost every social scene on campus, whether I tried to actively engage or not. I saw part of a reel the other day that was like, you do not have imposter syndrome, you are an imposter. This place was not created with you in mind, and you were not meant for it. It does not want to make space for you, and it’s not going to. It wants to kick you out. That has been my entire college career. I am not wanted or included anywhere, and I am met with considerable pushback when I try to create spaces for myself or force myself in. I am not prioritized or valued. And it really sucks to sit with that. Because rejection is one thing, but to spend 5 years of my life somewhere and to not feel accepted anywhere I go? I don’t even feel accepted in my own home because I have a shitty ass relationship with my housemate. I tried to follow what would give me joy, to avoid or to leave what was making me miserable, but everything has brought me back to misery one way or another. And that’s unfortunate, depressing, but also my reality. And that’s how I ended up accidentally hate-watching a 90min dance show.

I don’t have any advice or suggestions about how to cope with this if you find yourself in a similar position. I can say that I recognize you, I feel you, and we can be in solidarity in our frustration and grief (because I am definitely grieving what I lost coming to this university. It was at a great cost).

protect your peace bbs

autism, sexual consent, and sexual enthusiam—how to figure this shit out

tw: explicit discussion of sex

in previous posts I’ve talked about my aegosexuality, masturbation, my thoughts on sex as an ace spec person, etc. I haven’t ever really been sexually active, and even my “self-pleasure” moments don’t involve getting in contact with my “erogenous zones” or anything. in my pre-vibrator days, all it took was my imagination. nowadays, I do need a little bit of help, but I don’t do much exploration of my body. I put the vibrator on the part of my body I wanna stimulate and give it a couple of minutes and then voila! magic happens.

but in having a partner who actively wants to have sex with me (sometimes), my sex-ambivalent self has had to return to questions of consent, both as an ace-spec person who chooses to have sex in the absence of sexual attraction, and as an autistic person (self-diagnosed, going through the diagnosis process currently).

and the question(s) I wanna ask, straight up, is, what do other autistic people do when they’re nonverbal during ~sexy times~? how do you communicate and navigate consent? how do you have these conversations with partners, and when? how do you communicate enthusiasm? how does being nonverbal positively or negatively impact the experience? do you “learn” to be verbal? do you ever feel pressured to do so?

I’ve always been quiet during orgasm, because usually, i was doing it in a shared bed/room or in a hospital (no joke, I’m deadass lol 🤣) so I didn’t have much privacy. learning to masturbate in silence means that even when I am in my house all alone, no one will ever hear me make a sound. you barely hear me breathing. and so, because i am silent when getting off solo, when another person is involved, i am similarly very quiet, especially when i am enjoying it. however, I’ve realized that to the other person(s) involved, when you don’t say shit they think something is wrong, that you’re uncomfortable, or you’re not in the mood. my shyness when it comes to sex does not make me very convincing when i say “carry on,” even if i actually mean it. and regardless of whether or not the sexual attraction is there, it takes awhile for the physical response to match up with the mental response. it’s like there’s a delayed processing of the body sensations.

i did a quick google search and found an article about autism and sexual consent. the “helpful tactics” section i found uniquely helpful for my situation:

Autistics are every bit as diverse in their sexual interests and practices as non-autistics; some value a robust interest in sex and imaginative intimate lives while others could take it or leave it. Adapting to the above challenges involves cooperation and modifying expectations about how to express oneself. Partners can strive for flexibility in accommodating one another. For example, partners can problem-solve tactful ways for the sensory-sensitive person to express discomfort without rejecting the other person.
Autistic people can benefit from guidance about relationships and dating in general. The tendency to communicate directly and avoid small talk can make it difficult to connect with prospective partners. In terms of sexual interactions and consent, specific behavioral guidance can increase confidence and reduce misunderstandings and awkwardness.
Clinicians and educators can equip autistic adults with language and non-verbal communication so they can interact effectively in dating and sexual encounters. Examples of this include talking about a yes/no/maybe list prior to sexual activity; using gestures and signals to indicate overwhelm or need for a break or typing out text communication on a phone. Someone who craves spur of the moment liaisons can work with their partner to identify what conditions or circumstances may make this possible. Meanwhile they can also broaden their repertoire to welcome excitement through planning and preparing for sex, sharing suggestive daytime text messages or flirtatious exchanges that cultivate anticipation for both people.
Partners can vary the communication medium they use as needed, so that a shoulder tap or shaking one’s head serves to convey discomfort when talking isn’t accessible. People who demonstrate caring and affection by accepting a range of behaviors, not just conventional or preferred styles, are much more likely to enjoy and sustain the intimate aspect of their relationship. (emphasis added)

I found the parts that I bolded to be a particularly helpful starting point in terms of how I would like to approach sexual encounters going forward. Just as should always be the case, it seems to boil down to communicating. It’s been a little over a week since I left my partner on another continent, and the memory of our last night together is constantly on replay in my mind. I’ve found myself lowkey attempting to be more verbal in my nighttime masturbation sessions, so that I can be a more vocal partner next time we are together. But I wonder if that is really needed, if it doesn’t add anything to my experience of pleasure. I am capable of consent, but I want to be capable of enthusiasm as well. how do I do that? I’ll let y’all know when figure it out.

being sad

what i’m listening to as i’m writing: ALONE, PART 3 by XXXTENACION

tw: death, suicide mention, eating disorder mention, (internalized) ableism, body dysmorphia

i don’t want to die.

or, what i mean is, this current moment of sadness is not because i am inundated with thoughts of wanting to kill myself. I’m experiencing a level of anxiety and pressure that i haven’t had in quite awhile, and it’s causing my heart to be heavy. and i feel so alone that I’ve managed to make tears leak from eyes (damn near impossible on t lmfao). so let’s talk about it.

i came to college for upward social mobility. specifically, i came to an elite private university for financial stability. i have been financially independent since i was 18, and poor my entire life. a series of unexpected and unavoidable emergencies have drained me financially to the extent that I’ve been dealing with food insecurity again. I’ve been denied for food stamps, applied again, but I’m not hopeful that the outcome will be any different this time. I’m struggling academically, particularly with the amorphousness of my thesis project, but have felt forced to posture as if i have my shit together because I’m finally a senior. i might be in credit card debt for the first time, and that causes me so much anxiety that i don’t have the capacity to reach out to anyone for help, though i know that there are those who would be willing. I’ve always been a giver, even when i don’t have much to give, but I’m starting to feel overwhelmed by turning down asks from people that i really wish i could support. i wish i could talk to both of my partners about what’s going on on my end, but i am so stuck in my emotions that i don’t know how to communicate right now. with my more recent partner, i feel like so much more about me needs to be explained before i can explain how i got to where i am. i really only have one friend that checks in with me daily, but neither of us are in a position to support each other right now.

I’m also dealing with the crushing weight of ableism. i wonder at what point did my disabilities become a secret? or, when did i feel like i couldn’t talk bout them? it’s some internalized shit for sure. I’ve spent about a week at my sister’s place and have been struggling to hear her this entire time and she doesn’t even know it. and i really could just tell her. i could tell her so many things. she’s grown a lot these past 3 years or so, and even if she doesn’t understand my experience, she’s more likely to listen and learn this time around than the old version of her. so why don’t i trust her enough? i don’t really know.

I’m having a hard time managing my day to day. trying to keep abreast of short and long term responsibilities and missing out everything in the middle. feeling overwhelmed by all the decisions i have to make. i don’t know how to choose courses for next semester, how to make post grad plans, how to take care of my body, how to complete my assignments, how to be honest with myself. none of this is unique to me, college seniors go through this every year. but I’m realizing i didn’t get as much out of this place as i should have. I’m not prepared for my future. I’m not ready to move on, especially when there’s nothing specific to transition to. change is hard, and there’s no security.

my sister would never let me be homeless, but living with her would exacerbate my anxieties. knowing i don’t have family to support me if i am to graduate in May creates extra pressure to figure out my finances before sliding further back into poverty. the system has always been unfair, but i have no choice currently but to find my way through it.

i don’t like that there are people who make me feel uncomfortable about my body or gender presentation, and i don’t like even more that some of those people are my family. i don’t know if my bio fam is compatible with me living my truth, and that’s scary too. I’m happy for the generation of kids who are getting to know and express their truth sooner than i was ever able to, and yet I’m sadder still that most of us are still struggling. it doesn’t make it any easier that as I’ve set things in motion for top surgery/breast reduction next year, I’m trying to figure out how i feel about my body. my genderfluidity feels like another thing to hide, as i feel “fake” in some spaces. let’s not even talk about my almost-aroace-ness,which i constantly feel obligated to justify or explain. my psych ghosted me for five months because she’s on maternity leave and “there’s nothing she can do for me,” so she’s leaving me to be with poor executive functioning and an inadequate med regimen. i am no stranger to sadness, but I’m crying bitterly as I’m typing because once again i am sad at a time when everyone around me expects me to be happy. i only have so many smiles and forced laughs to give before my heart stops breathing.

all of this has made it hard to take care of my body lately, and when he doesn’t feel good my mental doesn’t either. very few people have ever been considerate when it comes to my eating disorder, though i know people look at my fat Black body and wonder how.

i don’t know what would comfort me, what would make me feel better or secure or safe. like money, sure. it would help with some of the anxiety, like how to pay for january’s rent or my credit cards or food. if i had enough of it, i could use it to find secure housing and food for my partners, or someone to take over the tasks i have difficulty with, like cleaning or food prep or making a schedule. but i think rather than money, what i’d really like is community care. to not feel alone.

i miss Black people. sometimes i oddly finding myself missing the types of groups that existed in my high school. while i never fit in or had many friends due to my neurodivergences, there was a specific kind of experience in being that kind of Black space that I miss. and as people pass away, I know I’ll never get back to that.

If I die tomorrow, I die tomorrow. but what a blessing it would be to die happy.

protect your peace my loves. and it’s okay if you don’t know where your peace is, or how to protect it. capitalism warps self-protection to the extent that it seems like selfishness. don’t get caught in the lie. your existence is beautiful, even if it is painful. take care 💜 (purple heart emoji).

to be young and disabled

while disability is a narrative that i have only recently claimed for myself, I have lived within the spectrum of disability my entire life. growing up in communities that lacked the language, awareness, and understanding for me to come to this realization when I had a more robust support network, i deal with the twin anxieties of grappling with this term, this identity, on its own while also experiencing the reoccurring identity crisis those of my generation are no stranger to. I am struggling to see myself as having use, or value, struggling to create meaning in my life, struggling to be present, struggling to breathe, struggling to enjoy and feel pleasure, because im scared. because the more my lived experience differs from neurotypical able-bodied folx the more afraid i become that people will think my life holds no value. I think of Mabel Hampton, my queer gender-nonconforming grandmotherly icon, and wonder at how she was so loved. I wonder too, how long people will continue to love me.

I’m 21, and I deal with temporary blindness as a result of the pressure in my brain being too high. I have side to side blurry vision, so i often squint to put things into focus. sometimes everything becomes blurry and hazy, or my peripheral vision disappears, or my center field decides to take a vacation. my optic nerves seem to be forever swollen. I drop things often, and run into things, and i feel like i guesstimate every time i try to read something. i feel blessed when people describe what is on the screen. for every day, every moment, every second that i can “see” without “impairment” i feel insecurities about whether or not my disability is real.

i walk through the world and can maybe hear half of it–i have struggled to hear my entire life, but no one really noticed or thought to check why. i still don’t know why my left ear ain’t about this hearing life, i just wish i paid more attention so i didn’t almost get run over by cars all the time. though is it really my fault, i just follow other folx on the sidewalk when they move. sometimes i can’t tell what the lights want me to do, and not all crosswalks speak to you. perhaps i should play them some ari lennox and then i’d be less lost.

i wonder for how many others being young and disabled is also about limiting your chances for embarrassment. i lost control of my bladder when i was 14, so i wear incontinence pads for when my bladder leaks three or four times a day. less stained underwear that way. less cancelling of meetings, running home early, crying in the bathroom that way. wonder how many others have desperately searched for a restroom to piss yourself right when you get there? or to have to purchase something at the store before they let you in? how many times has capitalism made a mockery of your body?

capitalism laughs at my pain, all the time. the emotional pain, spiritual pain, physical pain. therapists are paid to talk to me about it, and they do the same thing too. people ignore Black bodies that carry pain, and mine has a lot of it. I am preoccupied with it because I am full of it, i am choking on pain everyday. sometimes it feels burdensome, feels heavy, feels inescapable. i wonder if anyone would want to be in a relationship with a body that is always pained.

the lithium im on to mute my soul’s crying causes small, almost unnoticeable, shakes in my hands. no one can see them but i feel these small earthquakes, the tremors reverberating through any object i attempt to carry. i struggle with opening bottles, i spill water, i can never hold onto anything for any substantial amount of time. i am afraid to hold glass, afraid to hold fragile items, afraid to hold me, lest i break them all.

sometimes my body acts in ways no one understands, but i know he is just confuzzled. i am too. that’s why i have PVCs–premature ventricular contractions–old girl is just confused about the order she’s supposed to beat in. i also have no rhythm, or incorrect rhythm, and routinely embarrass all africans who can dance in the shower. i think it’s also why i have PCOS–my body just want to bleed out all the babies im not making every couple of months, instead of at the end of every month–and that’s okay, she can set her own schedule if she wants to.

i talked a little bit about how i experience the world here because people don’t understand what im going through too often for me to not want to say something. i think what people don’t realize, however, is that i don’t experience all of these in isolation–my lived experience is shaped by them together. also too, that disability is a process that is always ongoing and impacted by my other positionalities, such as being a darkskinned Black genderqueer person. Assumptions like all hard of hearing folx can read lips, or that all visually impaired folx use walking aids. there’s a tweet that sums this up really well:

[image description:
Tweet from @appyjumpindaze
“Cancel the binary view of disability.
Blind ppl might walk without a cane but need large text & other aids.
Deaf/Hoh might use ASL but not all the time. One person may use live dictation, another read lips.
Wheelchair users might walk some days.
Disability is not binary.]

i think being disabled makes me really understanding and compassionate and less judgmental of other folx. i hope that i am easy for people to connect with and that relationships and interactions with me have calming and relaxing vibes and don’t feel transactional or tied to productivity. i occasionally think about the future, the viability of a career as a disabled public school teacher. i also think often of pain. so do with that what you will.

i find solace in movements of great uncertainty in comfort activities. repetitive moments, weighted objects, my beloved afropop. please do your comfort things, for you, for me, for any reason really. i really wish that that it was affirmed more often to just be, as humans, in the moment, with no specific purpose in mind.

a follow up on writing (physical) pain: pain in a Black Body & disability

I’ve been having tinnitus on and off for over six months now, but it began to intensify in late October. Somewhere along the line, I also started having headaches–again.

But in early December 2020, my headaches and tinnitus took a turn that I’ve never experienced before. I started experiencing blurry vision, or my vision would go dark, particularly at the center of my eyes. My head literally felt like it was SWIMMING in pain–if that was physically possible. I started having neck pain, pain at my temples, the back of my head, pain everywhere. My (already poor) quality of sleep began to decrease rapidly, leading to…more pain.

I also had started a (temporary) job at a bookstore that required me to be on my feet for 6-8 hours a day, 5+ days a week. My body would be in so much pain it would be all I could do to just stand up straight for the duration of my shift. My work as a bookseller became sloppy, because I literally could not see in front of me to adjust displays, help customers find books, give out change.

and then, I broke my glasses. and so went back and forth wearing the incorrect prescription (the less intense power of my old glasses didn’t cause headaches) or my new updated prescription, which seemingly made my headaches worse–but honestly, a number of factors could have been doing it. I was in so much pain, it was hard to keep up with activities of daily living–like bathing, brushing my teeth, preparing and cooking meals, getting dressed, walking up and down stairs.

Tinnitus + Masks made it difficult to hear customers at the register, and my in and out vision made seeing the screen almost impossible. I relied almost solely on my peripheral vision and the short-lived bursts of relief my 15 minute break offerred.

I had no idea where this had come from. Was it a new antibiotic I had started to treat a rare skin condition I had developed? Was it delayed side effects form my antipsychotics? Something else?

I visited an ENT (Ear, Nose, and Throat) doctor who requested an MRI since my tinnitus had been going on for so long, but nothing “abnormal” was found. He suggested that I see a neurologist to see if I maybe had a headache or tension disorder or something.

At this point I was becoming a little scared. I knew all too well how limiting pain could be, both in terms of “quality of life” but also in achieving the immediate, every day, goal of survival. If this were to continue and become a long term situation, I could very well lose my already tenuous source of income.

To make matters worse, my mother had come to “visit” for the holidays. If the level of open and honest communication with my twin sister whom I live with is sub-par, at best, with my (biological) mother, it borders on non-existent. And all because of one thing, really: she constantly over crosses boundaries.

Intentionally or unintentionally, she tends to make a lot of the time that we spend together about her. Which is incredibly frustrating for me on nights like tonight, when I had writing I had intended to work on, applications to begin, and needed to re-plan out my week because my work hours have changed and I have an 8am doctor’s appointment (to talk about the very thing that I am writing about) and an interview for an internship.

But her self-centeredness felt even more disrespectful when my pain was at its peak this past holiday. Not only was I working a job that is not enough to survive on, I came home to a space that had been taken over by someone who seemed to have no regard for my actual wellbeing. While I am aware that right now I am writing this in a mood of frustration and anger, and I know that my mother genuinely believes that she cares about me and my health, her actions say otherwise, and her actions are very loud.

These past two weeks or so, the headaches have come and gone (and were even gone for a couple of days!) but the vision issues are still here. Coincidentally, as I’ve been thinking and reflecting on what it might mean to continue to live my life with chronic pain (whether it’s the headaches, my right knee that has been fucked up since I was 12, the emotional pain that comes with my mental illnesses and the abuse and marginalization that I experience as a Black person and person of African descent in what is now known in the United States, breathing), I’ve also been coming into contact with stories of Black people with disability (though not always framed that way). I’m listening to Michelle Obama’s audiobook, Becoming and her father’s experience with multiple sclerosis (MS). A natural hair youtuber that I didn’t use to follow (but i occasionally watched her content) put out a video about her visual disability. I’m reading Sister Outsider, and in part, Audre Lorde’s experience with cancer. I listened to the audiobook of Between the World and Me by Ta-Nehisi Coates, and reread the book because my mother gifted it to me for Christmas. That book is about the Black body, and I think to write bout the Black body is to write about disability, because so much of the Black body’s experience is centered upon and defined by pain and chains, effectively limiting our ability.

I’ve wrestled with my “validity” as a disabled person for the past two years or so, but the longer that I experience life, the more that I am beginning to understand that we are all really just a matter of time from becoming “disabled.” It seems to be part of the natural progression of the human condition that our bodies will eventually become “limited” in capability. But also, we have the technology and resources available to us to live and create a world where disability doesn’t have to mean lack of access, lack of respect, lack of agency or autonomy. So what is taking the world so long? For sustainability, for equity?

I don’t know, maybe I should ask the fools who stormed the capital if they do.

Anywho. End of tonight’s rant/vent/emotional sharing/update. I currently occupy a body that is in pain and can barely see the screen, which I think is a sign to turn in for the night.