A conversation we had in class was about how certain accommodations can negatively affect the others around you. That leads me to think about how certain things I do to comfort myself can be seen as nuisances to others.

 I often bite my nails and I wouldn’t say it’s necessarily an anxiety thing as it’s just something I do whether or not I feel anxiety at that moment. It was often expressed throughout my childhood that biting my nails was annoying because of the sound it can make. Most of the time I bite my nails it’s not something I thought of doing. It’s just something I do out of habit and it does have a calming effect on my mind so I don’t even realize. 

Another thing is my pacing or fidgeting. I pace and fidget a lot and I am never sitting still. To sit still, I have to focus on not moving and when I do my body feels very uncomfortable. I was told that I distract people with my movements and they can cause people to become stressed out when that wasn’t my intention. Sometimes the movements are based on the music I’m listening to and my natural reaction is to go with the beat. Like biting my nails this is just something I do out of habit. 

These things were never meant to cause harm to others and the worst thing is no one says anything about it anymore so I’m wondering constantly whether or not I am affecting someone. I think this puts into perspective what people with handicaps think. Since the world doesn’t accommodate them they have to worry about how their handicaps are not only affecting themselves but how they affect others as a whole. The anxieties I feel when I do these things I think to some severely lesser degree are what people with handicaps experience and if I feel stress from my things I can only imagine how they must feel as they have to struggle to feel comfortable in the world around them.

Have you ever felt embarrassed about how your body looks? Have you felt uncomfortable around in public, or even around family? How many times have you reminded yourself to “lose weight”? Are you tired of the fat shame you keep on getting? I am sure you would want to get rid of the excess weight, but staying consistent is hard for some people.

I started feeling insecure about my weight during my middle school years. I did not look like my other peers in terms of physique, and I would get called out for it. The emotions I had were not great to say the least, and it left me feeling ashamed of myself. Having to go to school five days a week under these conditions really shattered my self-esteem. I constantly felt like I was alone in class, as I was certainly isolated from the rest of the kids. I had no one to talk to because I was unable to make friends during that time. With the shame I carried, I even avoided speaking to my parents and teachers regarding the situation I was in. Honestly it was hard for me.

Being overweight and having to deal with body shaming scarred my mental health and well-being. I had a phase where I refused to take proper care of myself, which consisted of me eating less calories than the norm and hating my body overall. The harmful comments I received left me unaware of what I was doing to my health in general.

Ever since the days of my traumatic middle school experience, I wake up displeased with the way I looked in the mirror. Losing weight has become an objective for me, hoping to improve on myself and my health. It became less stressful when the pandemic hit a few years ago. I no longer had to constantly think about what others thought about me. It was a time where I could be at peace and find my values as a person.

Losing weight requires proper consistency and self-discipline. For some people it can take a long time to notice weight loss, as everyone’s weight loss journey is different. What’s important to me is that I learned to love my body and pushed through it and I’m proud of myself for that. Sometimes we just need to ease off on what others think and focus on yourself, and not for the sake of others

The subject of neurodivergence is a huge issue, not simply because it reveals the incredible breadth of how the human mind can function, but also because of how that is situated within the intricacies of our very diverse backgrounds and upbringings, infused with social constructions of race, gender, class, and generations. Nature and nurture take on whole new meanings here because they can no longer be perceived as bifurcated aspects of human development. Our neurological configurations are primed and shaped by our environment, and our environments were molded to hold, or not hold, our neurology. In this way, the term “neurodivergent” vastly oversimplifies the entirety of what it means to be something other than neurotypical.  

This is the blessing and the curse of having labels to help us define things. When we give something a name, an amorphous concept can suddenly have grounding and shape through language and become a topic of discourse we can then begin to understand it through. Giving language to an inner experience can be hugely impactful in validating what sometimes feels like isolating events that exist only in our minds. However, that very same label can be a restricting device that limits our ability to truly grasp the enormous landscape that a term like “neurodivergent” encompasses.  What becomes imperative here is how we allow that word to be representative of something that it cannot possibly adequately convey. 

When we think of the Pacific Islands, what does that thought come with? Tropical islands? Palm trees and coconuts? Resorts and vacation getaways? Sunny skies and sandy beaches? Volcanoes? While these are definitely aspects you could find throughout the Pacific, in no way do these elements define what the Pacific Islands actually consist of: nuclear devastation in the Marshall Islands and French Polynesia; phosphate mining in Banaba; military occupation in Hawaiʻi; coup deʻtat in Fiji; island extinction by sea level rise in Kiribati. There is so much history and context and culture to each individual island and atoll, much of which has nothing to do with the greater categorization of these places as a geographic designation. Yet that is often what this region of the world becomes delimited to. 

“Neurodivergent” risks having that same delimiting effect. Perhaps what might be helpful is how we view what labels represent. Instead of seeing umbrella terms as something that encompasses many things, maybe we need to understand them as small doorways into whole other realities where new and unfamiliar worlds exist. In this way, the assumption is not that we possess a single word that consists of many elements – an approach to knowledge that suggests what we already know and thus, can simplify – but rather that we can use a single word to help us enter into a space that we must now learn about – an approach to knowledge that centers the possibility of what remains to be known.

I love the fall, but I hate the dark. The cool weather is always a change I look forward to at first.  It then quickly becomes dreadful. Excruciating. Why is it dark at 5pm? 

I don’t know why the change of an hour has such a big effect on me. It shouldn’t.

I can’t get myself to wake up. I can’t get myself to class. My floor is made of clothes. Any assignment takes so much willpower to complete. At this point I struggle to truly try. Everything I do gets 25% of my effort, because that’s all I can spare. I’m falling behind in all of my classes because my brain feels like mush. Everything feels like it’s falling apart. Graduating with my degree seems so far and unreachable. I hate that I have an obligation to the government because I have to borrow their money. I’m scared I’m doing this for nothing. I hope I can pay it back. What if I can’t? 

My eyes are puffy and my cheeks are raw and red. I wish I was a pretty crier. I don’t think I’ve ever impressed anyone. I wouldn’t be impressed with myself. I’m not impressed with myself. I shouldn’t be ranting like this. This is supposed to be a blog post. Does this relate to our class topics? I don’t know. I’m sorry. 

.

I just feel so burnt out. I wonder if it’s normal to feel this way? I assume it’s not. What exactly is normal? Something is only normal if it is common, I guess? If that’s the case, I don’t wanna be normal. Except when it comes to the way I’ve been feeling lately. That makes me want to be “normal”. 

TW// eating disorders, abuse

Growing up in the dance studio was not all bad. I had friends that I loved talking to and hanging out with, and I loved wearing makeup and pretty costumes. It also felt so good to move my body and gain control over it in a way I hadn’t known to do. Dance also taught me discipline, and the importance of showing up and articulation. And now being an adult, I am very thankful I know how to dance because it allows me to take what I have learned and create with it. But we’re not talking about the benefits, so let’s get into it.

1. Ballet

In order to compete on most dance teams, you are required to take a certain number of technique classes, always including ballet. This is important to note because ballet is the foundation that most classical dancers build off of, so there is no separating ballet from other styles of dance except maybe some forms of hip-hop. So, when someone mainly dances jazz, they most likely have years and years of ballet experience as well. I think ballet is the most toxic form of dancing there is, and it is something needed for almost every dancer, whether they hate it or not.

2. “Dance is life”

I’m sure you’ve heard people say “____ is life” but whenever I heard a dancer say that I knew they always meant it. At least at the studios in my area, people would typically go to dance 4-5 times a week for around 5 hours at a time. Keep in mind those hours are the minimum to be able to compete. And it’s not a myth that some parents homeschool their kids so they can spend more time in the studio. And I think it is like this because of how competitive the sport is. With dance, it is typically all or nothing.

Dance also becomes a huge part of someone’s identity, especially when they really don’t have much of a life outside of dance. I’ve known several people who have gotten older and had an identity crisis after quitting dance. This was something I slightly struggled with as well.

3. You will never be good enough

In ballet especially, there is an unwavering feeling of never being good enough. “Good enough for what” you might ask. To which I say…. everything. That’s at least how I felt, and still feel frequently. There is always something that can be improved in dance. If you look up videos of the greatest dancers in the world, their coach will always have a critique to give after they finish. Because in ballet, you’re supposed to be as close to perfect as possible. Ballet also makes your body move in ways that are unnatural and quite harmful to the body.

That being said, you are constantly worried about your body and the way that it looks because at the end of the day, that’s what dance is. And how do we do that? Mirrors around the whole room. Pair that with skintight leotards, staring at yourself while being told to suck in your lunch. Now add any sort of body issues to that. Say for example, you go home to a mom who is constantly on diets and criticizing her weight and body. Unfortunately, going home to a mother who deals with those issues is very common. This is where eating disorders come in. I personally developed my eating disorder around the age of 12 or 13, and dance just fanned the flames. Looking in the mirror for 20-25 hours a week had a huge impact on my brain and caused body dysmorphia. For those who don’t know. Body dysmorphia is when an individual does not have an accurate perception of their body in the mirror. The mind distorts the image you see to make yourself look bigger than you are or exaggerate insecurities. I still have trouble with mirrors because I can easily get caught in a trance like state. As you can imagine, staring at my stomach in the mirror everyday was not healthy, and I would obsess over it to where I decided not to eat as much so I could stay skinny (mind you I was 13 and hitting puberty). That’s when things snowballed into a much more complex eating disorder. According to National Library of Medicine, “The overall prevalence of eating disorders was 12.0% (16.4% for ballet dancers), 2.0% (4% for ballet dancers) for anorexia, 4.4% (2% for ballet dancers) for bulimia and 9.5% (14.9% for ballet dancers) for eating disorders not otherwise specified (EDNOS)” (Arcelus, 2013).

4. Abuse

I did not experience any physical abuse during my time as a dancer, but I have heard stories. The classics are teachers throwing shoes at students and/or sitting on them to get the dancer to go down in their split. This is a lot more prevalent in other countries, but it still happens. There is also the emotional/mental abuse that occurs. Examples of this are comments about people’s stomachs, favoritism in the team, and ridicule for not doing good enough.

5. Lack of diversity/Intersectionality

Most dancers are women, and a lot of men who dance get made fun of for being “gay.” As with other art forms, dance is seen as something for girls. For other art forms, (painting, singing, drawing) there is more acceptance of men. However, with dance, it is still heavily gendered. This made me think about the nature of dance and being a woman, there is a lot of overlap. I would even say that dance helped to socialize me as a woman. In both being a woman and dancer, there is a desire for beauty and perfection. There is also the concept of not taking up space and making yourself smaller (“bring your belly button to your spine”). Even in freer moves in dance such as a leap, there is still so much control which goes on inside. Dance and being a woman often look effortless, yet there is so much work and pain that occurs behind the pretty face. Even smiling for the audience makes me think of how men tell women to smile for them, like the world is an audience. Have you ever heard the phrase “to be a woman is to perform?” Yeah. Dance really engrained that into me. There’s also “beauty is pain” which I think captures both very well.

Most ballet dancers are thin and white as well. Growing up it was very rare to see a POC ballet dancer. I cannot speak for women of color, and their experiences, but as with many other US institutions, there is racism which occurs. Dance is also expensive as hell. So, the people that dance are only able to do so because of the money their parents are spending. This leads to a major lack of diversity. Dance is also pretty ableist. Sure, there are disabled dancers, but I have never seen any in person. Thinking about the social model of disability, it is not the impairment that hinders people, but the way that dance is not usually accepting or accommodating of disabilities. Due this lack, most disabled people do not feel welcomed in the dance (especially ballet) community. Looking at dance from a stereotypical perspective, it appears there is no room for disabled people. But this is complete BS! I don’t think the dance community has done enough advocating or caring for those who do not look like the typical dancer. Because dance should be accessible and affordable for EVERYONE. Finally, there’s the fatphobia. I feel I do not need to elaborate on this much, although this is one of dance’s most toxic traits. I think dance has gotten a lot more body positive recently, but I see this positivity mainly in hip-hop, which has always been more inclusive. But ballet man…… There is no practical reason why ballet dancers must be skinny other than for the fatphobic people in the audience and in society. Yet this still hinders so many people? Why should one have to change their body to create art? It’s ridiculous.

References

Arcelus, J., Witcomb, G. L., & Mitchell, A. (2014). Prevalence of eating disorders amongst dancers: a systemic review and meta-analysis. European eating disorders review : the journal of the Eating Disorders Association, 22(2), 92–101. https://doi.org/10.1002/erv.2271

I think a lot about the position of many older folks when they describe how “bad they had it” or how hard their younger lives were when justifying why they don’t think accommodations or care should be given to people presently suffering from a disabling world. I think it is a very defensive thing to say and to assume that if someone gets access to what they need, it will somehow be taken away from someone else. 

The first time I heard someone explain “zero sum thinking” was in a podcast that one of my favorite people, Alok Vaid-Menon (they/them), was featured on. They spoke in the podcast about cis peoples’ reactions to trans and gender non-conforming people existing. Alok explained that when trans people ask for basic humanity and respect, cis people view it as an “attack from a zero sum ideology that makes you think that if other people thrive, you must somehow lose something.” I recommend listening to this episode, I have probably listened to it 10+ times and forced my dad to listen to it on a car ride once 🙂 ! 

The term “zero sum ideology/thinking” that Alok used throughout the podcast exactly encapsulates my thoughts from the first paragraph. I think this sort of reaction can apply to many different marginalized identities, especially those we have been discussing in class in the recent weeks. A lot of times communities that society has disabled have to do a lot of extra work to create support structures that work for them. Because of the extra care they give to themselves and the thinking required to meet their specific needs, often times their curated support structures benefit them in ways that our society cannot achieve even for those it was built to favor. Zero sum ideology I think is more a reaction to the mirror that these communities hold up to the privileged. For example, someone might be frustrated by the fact that people with autism get to take breaks from work to recover from overstimulation, that trans people can wear whatever they want outside and still be treated normally, or that someone with a chronic but invisible disability does not have to give an excuse each time they need to work from home or take a day off. The frustration that someone would experience from this seems more to me like they are realizing that they would also benefit from similar accommodations/treatment to what these people have been given. However, it is super hard to come to terms with the fact that you have not been treated right by others or treated yourself right, and the introspection that it takes to understand your negative reactions is much more intense and uncomfortable than remaining complacent and following the status quo.

I can’t write when I need to.  I can’t take my thoughts and put them onto paper.  I can’t do this assignment.  I have things to talk about.  I’ve already talked about them.  Can I talk about them again?  Some people get mad when I repeat things.  I’ve learned to stop repeating things.  People don’t like repetition.  They don’t like to repeat themselves either.

I have things to do.  I need to get out of bed.  It’s morning, I have class in two hours.  It takes two hours to make coffee, breakfast, get dressed, and brush my teeth.  I feel like it doesn’t take this long for everyone else.  My parents and sister never understood how I took so long.  We didn’t know I had ADHD.

I don’t think my mom wanted to know.  She took me to Jewish social services when I was in 5th grade so they could evaluate me for autism.  They said I didn’t have autism.  

They said they thought I might have ADD.  They couldn’t evaluate me for ADD.  It’s not ADD, it’s ADHD.  My mom knew.  She didn’t pursue it.  

She’s a substitute teacher.  She’s seen kids with ADHD, young kids, get prescribed heavy medication.  That’s what the doctors prescribe.  That’s what the other teachers want the kids to take.  She didn’t want me on medication, said it would permanently alter my brain chemistry.  She was scared.

I don’t think medication was necessary in my case.

It would have been nice to have other accommodations though.

I think I might need medication now.

I was almost 18 when I got my diagnosis.  I found out my older sister got diagnosed with ADHD too, a few years before mine.  I didn’t know about it.  They never brought it up.  They were in college.  Mom didn’t mention it.

Or did she?

I can’t remember.

My clock is set 5 minutes fast so I get to class early.

I show up to class 5 minutes late.

It’s 7:30 pm.  I should find a place to wrap up my homework so I can start heating up a frozen dinner.  I don’t have the energy to cook.  Cooking from scratch takes hours.  Cooking takes longer for me than others.

It’s 8:00.  I should eat.  I’m no longer working.  I’m sitting at my desk.

It’s 9:00.  I need to eat.

It’s 10:00.  I still havent eaten.

It’s 10:30 and I’m finally starting to heat up dinner.

I finish eating at 11:00.  I still need to shower.  I won’t get into my bed if I don’t shower, because I don’t want the sheets or blankets to get dirty, because I don’t want to clean them.  I can’t clean them.  I have a washing machine.  I just can’t clean the sheets.

I need to sleep.

I need to get into bed.

I can’t leave my desk.

I’m going to do this tomorrow.

It’s tomorrow.

To preface this post, I’m sorry. I had hoped, by now, I could write something easier and more digestible; something that could get you all your two comments and we’d both be on our merry way. Instead you all have been subjected to learning about me, my family, and the things I keep in my mind whilst we are on this process of discussing the body. I hope you all don’t mind. 

To begin, as I’m typing this, I am racing through so many thoughts. I’m flipping through my journal, trying to string together thoughts to say. I want to talk about my family. I want to say how we never talk about chronic illness. In our home, it’s akin to cursing, to say you are sick and need care means more defeat than strength. As I was thinking about how to write something, I found a poem that gives me comfort, When You Believe Your Body is Your Enemy by Andrea Gibson. I could not tear my eyes away from these lines: 

The soul misses every single day the body was sick,the NOW it forced,the HERE

It built from the fever. Fever is how the body prays,

How it burns and begs for another precious day.

When I read it, I am reminded of the courage it takes to face illnesses; to persist regardless of ability.  I hope you can read this poem, and find something in it too. 

I am lost. I want so badly to live in this ideal world we create in class during discussions; radically shifting the nature of society. How nice would it be to have a campus built for accessibility: ramps instead of stairs, class preferences that work for everyone, universal understanding of neurodiverse needs. To know all the answers to everyone’s problems, to find ways to solve them. In our class world, spoon theory has no place; everyone has more than enough spoons to handle whatever it is they need and still have more leftovers. The dismantling of systems of oppression is done; everyone sings, and we all go home. The most unfortunate thing is, this is not reality. We all have to face it and go through; the important thing to remember is that we are all facing it and going through it. People are not as cold as we perceive them to be. There is light somewhere, if you’re willing to see it. 

I wanted to include here a note I had on Autism; A short defense of Applied Behavioral Analysis therapy. I don’t really care too much for the practice myself, but it is helpful. You do not typically take your child straight to ABA; they are tested, referred, and treated according to their individual needs. It is therapy like any other, and comes with all the same complications as finding an appropriate therapist and dealing with the burdens of insurance. It is easy to forget that not everyone knows as much as we do; it’s a privilege to be here in college with access to resources but parents need grace. To be in the process of unlearning harmful stigmas about their child, learning processes to better support them, amidst all the other things that come with supporting a child in one area of the spectrum is hard. It is daunting. I have watched it first hand, and support my own family in navigating this process with my own sister. I must reiterate it as many times as I can: this is hard, ABA is not the best, but it helps in treating severe functioning issues. Functioning, in my mind, is not exactly synonymous with normalizing. To be normal is to conform with societal standards. To function is to be able to take care of yourself and communicate your needs.

I have been in an ABA research lab for almost two years now, and what I’ve learned is that… I don’t really like ABA. At least not some parts. I was very apprehensive to start out because I had an awareness of its ethical implications. From the start I had an issue with the label “problem behavior.” This term essentially refers to behaviors that an autistic kid has that are disruptive to the study or task being conducted. The child might be disruptive, loud, or unable to sit still. To me, problem behavior presumes that autism and autistic traits are inherently bad or troublesome. This has obvious implications for how people view autism. They might see autism as only problematic and challenging. There are also implications for how autistic people, especially kids, view themselves. ABA is usually conducted with toddlers, so imagine being like 3 or 4 and thinking that you are a bad person because of the behaviors you were born with. Imagine thinking your identity is not only different, but disruptive and problematic. Something to be contained and taken control over.

In our lab we thankfully don’t use punishment but we very often implement reinforcements in the form of praise or tangible and edible items. These reinforcements are given when the kiddo has done something correct. For instance, if they answer a question accurately on their own they could have 30 seconds of play time with their preferred toy. In other words, reinforcement is contingent on the researcher’s normative rules. The kiddo gets praised when they behave “correctly.” This teaches autistic kids that they will only be accepted if they suppress their behaviors to achieve a more normative and compliant exterior. They are taught that their autistic traits are just problem behavior that will not be rewarded. I can imagine that this instills a sense of shame in autistic kids simply for existing. I also wonder if autistic kids must develop self-consciousness at an earlier age than neurotypical kids in order to mask and adapt to societal norms. Reinforcement is never given with the intention of validating autistic traits and strengths. In general, ABA emphasizes autistic challenges over autistic skills. I can imagine that ABA would be much more beneficial if there was a value placed on centering autism as something to be celebrated rather than only focusing on a set of behaviors that need to be fixed.

When we as a collective learn to accept autistic behaviors rather than try to change them, we are taking strides in dismantling what it means to behave “normally”. When we understand what autistic people need by listening to them rather than listening to everyone around them, we can create an environment that is accessible for autistic people to safely navigate the world. And when we center autistic strengths rather than continuing to infantilize autistic behaviors, we are reframing autism as a celebratory and lasting aspect of identity, all while acknowledging structural changes that must take place.