#but as I myself am physically disabled it is so. so disheartening to see so FEW representations in this fandom

[muzzlemouths]

not to sound desperate on main but since it's disability pride month it'd be really nice to see some art or fics with disabled Y/Ns.

[lorettapetrichor]

being disabled was a lot like being gay or trans when i was growing up. i knew it existed. i knew their experiences contained certain elements abled and cishet peoples' didnt. but they were all kinda distant and not things i considered as something i could be or become. it felt a lot like a personal version of the "as long as its not my kid" defense except "as long as its not me." i didnt dislike the idea of me being gay, i actually loved it--the popular crowd at my school was in fact the gay friend group--and that makes sense in retrospect. it just wasnt an option that felt available to me. i hung out with the queer kids in middle school and spent so much time wondering if i was like them, but it was so foreign that i didnt even know how to conceptualize that difference from "theyre gay" to "im gay." they were like two different states and all those other queer kids out there were their own people while i was just me. and then lo and behold, skip ahead a few years later and im a queer nonbinary lesbian.

and like with queerness, i always knew disabled people were out there with different experiences, and that they too needed rights and acceptance--but even as my genetic chronic illness began presenting itself and my pain became worse and i began struggling more and more, i still suffered so much imposter syndrome. i was chronically ill, but of course i wasnt disabled! i didnt have to use a cane, i could get by without people knowing i was sick, and once again, i considered myself an outsider to that community because i couldnt imagine myself fitting in.

and its only set in recently that oh my god i am disabled and it does fuck me over just as much as the disabled influencers across social media i see vlogging their struggles. these days, most of my time at home is spent in bed. i can barely function enough to make it through school or even do my hobbies. its incredibly disheartening and discouraging and somehow, only once i see my lifelong dreams of my future put in peril by this shift in my life, i finally see myself as disabled.

i feel like i had an actual thesis to this but the brain fog has been kicking my ass lately--but really theres both just something to be said about the overlap of queer and disabled experiences and why so many queer people are disabled and vice verse because of the mindset these experiences put you into, and also the reminder that anyone can be disabled whether they appear to be or not (yes, even physically) as well as the fact that disability can happen at any age. im 17 and was diagnosed with ehlers-danlos at 16. there were signs throughout my life but over the past year and especially last months, its actually started to really really impact me more extremely negatively than before. i wrote this because i didnt have the energy to do the 6+ homework assignments i needed to do today so . idk it used up the rest of my energy and i might go to sleep very quickly after hitting post. bleh

[fandomfluffandfuck]

smth abt the way both marvel and the fandom is so ableist towards bucky is so disheartening :/

it's bad enough that so much of stucky fanworks basically just deletes bucky's existence and have an oc date canon steve (which doesnt even make sense bc the characters' stories have always been so connected that doing that would wipe out so much of steve that they're giving endgame a run for its money) but then it becomes more exhausting how it's so obvious most fans who claim to love the characters would rather just replace bucky with a random abled person to project onto

it feels like fans wish canon had "conveniently" erased bucky's disabilities the way it erased steve's disabilities with the serum so it's one less "obstacle" in the way of projecting a separate character onto him

and it's not like marvel is the only ableist fandom, not by a long shot even if only counting ableism in sci-fi media, but i've had a much easier time in other fandoms celebrating disabled characters in the piece of media

but the way bucky gets treated feels like a whole other level, like everyone working on canon and fanon despises the fact that he's disabled and wishes it went away so they can have as much as a blank white slate to paint whatever they want on

This immediately made me think of a post I saw floating around that was an anon asking someone, wait, Bucky has a disability? And the blog answering with something like, dude, he's missing an arm!

It is disenheartening to see people forget large parts of characters.

Although, personally, I haven't experienced much of the OC-ification of Bucky, but that doesn't mean it isn't there--I do inhabit a very small corner of the fandom. I see a lot of works of different iterations of Bucky, but I also see the same with Steve so it doesn't strike me as anything but charming, I like watching these idiots falling in love over and over in all different universes. But, again, I'm sure there is treatment of Bucky in that way out there. So, I can't totally speak to that.

But, I think a lot of the erasure of Bucky's disabilities are due to the source material and the larger context of where the source material came from. Marvel doesn't show Bucky has having a disability or did Marvel show Steve as having disabilities, as you said. And Western society does not fucking like disabled people, it likes to pretend they don't exist (or worse, it likes to get rid of them completely). So, it makes sense that fans would be seemingly strangely unaware of Bucky's disabilities or feel uncomfortable talking about them. I understand the frustration and tiredness around fans not speaking about it or not acknowledging it. I do. But I can see why it happens, and I've tried to find fandom spaces where his character, along with Steve's character, is treated in a way I like. It's work, but I find it worth it since I can't control other people, lol.

(It also goes without saying that, yes, there are going to be some bad apples in the bunch that do use Bucky as an OC and/or purposefully disregard his disabilities. And that the fandom could certain benefit from widespread discussions about this topic.)

This reminds me, though, that I should pay more attention to disability details. Every time I read a fic with Bucky's or Steve's disabilities mentioned or expressed thoughtfully, I am reminded that I don't do much with that. There are rich details I could add, but I don't. And disabilities don't always have to be mentioned in smut, but having it from time to time, especially when I write canon stucky, would be a good thing. You have to be aware of mental and physical limits in kink, especially, so I should be better about inputting those details myself.

[beejnbabes]

I googled something about Maud to see if anyone from the show had ever confirmed it and found someone not from the show posted this and I am insulted.

As many of you know, I am diagnosed with Asperger’s Syndrome myself. I noticed two things which made me upset in this post. One was that although most of these symptoms listed are mine as well, this person assumed that ALL cases with AS feature these specific symptoms. I have, in fact, met people with AS who, for example, seemed very social and expressive and who could only still be identified with AS through the fact that after socializing, they needed to spend anywhere from hours to days alone. None of us are exactly alike. The second thing that upset me here is that this person listed “lack of empathy” as a symptom. Honestly, I’ve heard stories of ‘non-diagnosable/normal’ people poisoning kittens but have not once been told of a fellow AS who did. I myself can back this up with a memory from my own mind. The memory is as follows:

When I turned three years old, something started happening on a regular basis that I found upsetting. It began on the day of my third birthday party, at my house, in the backyard. I was watching my friend Aaron run around and suddenly, he tripped over something and fell face first into the tough cement flooring. I immediately imagined him being badly hurt by this fall instead of doing the usual thing of thinking it was funny and I began to cry. Loudly. Even when he got up laughing because he was okay, I cried and ran to hug him. It took what seemed like forever to calm down. At that same birthday, it occurred to me that to get the candy out of a piñata, you had to hit what appeared to be an animal and I couldn’t stand it anymore. When it came to my turn to hit the thing, I imagined it exploding into pieces and began to cry. Suddenly, I didn’t want the candy at all anymore if it meant killing something else. None of the other kids seemed to think of this, though. They kept lining up to hit it till it busted open and I just cried harder.

And I have Asperger’s. Let that sink in.

Also, to those who say I projected my mental issues onto Maud Pie in this post, maybe I did. Maybe I’m wrong. But it seems to me that her issues mirror my actual experience of AS as an adult who has been taught ways to cope with it since childhood and that’s all I know. I might also add that I have been a lifelong fan of MLP as a whole franchise and I used to find it disheartening that with so many ponies representing so many different personalities, none reflected back to me what I had... until the entrance of Maud Pie in Friendship Is Magic. As someone with AS, I notice Maud even having some of the symptoms that this person said she does not have. I often do not feel she totally looks others in the eye when talking and if she does, I’ve seen her seem to do it more with ponies she is closest to. Like myself. The only people I am able to look in the eyes are my mother, my nana and some of my best friends.

She also has a rejection of physical contact, I think. It could very well be that she’s simply not comfortable with hugging just anypony, but I did notice that she seemed only willing to hug close friends and family.

Myself, however, I have AS and do not have an issue with physical contact. Different Aspies have differing interpretations of personal space. Mine seems to allow hugging because my mother systematically taught me as a child that hugging is a good thing. I do, however, have sensory issues, obsessions, preference to be alone, good focus, and difficulty with eye contact. I used to have as a child but worked on monotonous voice, limited facial expression (still kind of have that actually) and a disability with reading the voices and faces of others. I also struggled with (and still sometimes do) interpreting certain figures of speech as true or false, taking words for granted, so to speak. “Who let the cat out of the bag” actually induced me to search around excitedly for a new kitty to play with rather than letting me know that someone wanted to know who told a secret, for example.

Also, I am not trying to imply that everyone with AS is good and everyone without it is bad. There are many good hearted people who do not have AS.

[conditionaljewel]

I have been experiencing a bit of a revelation as of late when it comes to my body, my well-being, and my existence. 

Last week I made the discovery that I have put on a considerable amount of weight. At the beginning of last year, I used to weigh 160 pounds. When I weighed myself last week, I was up to 190. And for a minute I was a little disheartened and upset by it, because I was trying so very hard to maintain a lower weight and figure.

But then I took a long hard look at myself in the mirror, really started to examine myself, and touch my body in ways I hadn’t in a long time. In that period of reflection, I realized that my body looks a lot better now than it did before at my lower weight. I have curves, I have a figure. It’s something that I’ve wanted to be able to say for a long time, and I couldn’t before, because I looked ~too thin, too frail, too tiny.

Society has ingrained an image into our heads of whats acceptable and what’s not, whats hot and what’s not, what’s sexy and what isn’t, and I’ve kicked that to the fucking curb. It doesn’t matter if you’re big, tiny, thin, fat, tall, short, muscular, toned, disabled, abled, whatever, everyone has their own beauty and attractions and radiation, and we need to embrace that. Our differences are what make us unique. 

Seeing my body now, thick thighs, a bigger tummy, curves all around, I’m feeling more confident because I am looking more feminine, more accentuated. I look more appropriately proportioned for my frame and stature, and I am finding more happiness in my body.

That happiness is leading me to trying to take more care of my physical being; moisturizing, grooming, exfoliating. Which in turn is helping to take care of my mental being, using that time to reflect and meditate, create a routine and continue to improve on it and myself.

I need that time to reflect and curate my mental health because I have been going through a rough time over the past few months. Between dealing with anxiety and panic attacks, depression, and physical illness, I have found myself unemployed for almost 2 full months, unable to find another job for whatever reason, falling behind on bills to the point where my car has been repossessed and is about to be resold at auction, and family issues out the ass. 

And as though the universe was aware of my situation, it sent me a sign that things are going to be okay. A woman whom Ive seen around our complex struck up a conversation with me, and we chatted for over an hour across a few encounters yesterday evening, and by the end of it I had realized that I am in the right direction. She sensed an aura in me that is waiting to burn bright and break free of its restraints, and said that she’s glad to see me where I’m at in my life and has belief in me that I’ll get to where I’m going, while imparting wisdom and life lessons that will stick with me.

I’m going to embrace my stomach and my thighs, my chub and my flub. The obvious trans-pandering problems aside, I’m happy with my body and where I’m at, and have realized I can be in love with myself despite its other flaws. I’m going to keep on flaunting and showing off my goods, and this will continue to spin good energy and ultimately I’ll find myself in a better place than I am right now.

[singloom]

My Open Letter to Voltron Staff

To Voltron Staff and VAs,

I wanted to take a little time to talk Season 7 and the feelings I was having. If you bear with me for a spell, I would like to share my positive experiences with you.

Simply put, this season was fantastic, an epic roller coaster of emotions blended with drama, and all the crowning moments of heartwarming and awesome that one can expect from Voltron. Everyone got a moment to shine and I'm still giddy from the ending (especially Shiro and the Atlas, bless.) <3

The main point of this, however, is to convey my most heartfelt appreciation and thanks for your portrayal of Shiro, especially in S7. He is without a doubt my favourite character for so many reasons, but there is a crucial reason I wanted to share with you.

As a lesbian with disabilities, I cannot begin to tell you how much of an inspiration Shiro is. (But I'll try!) He is a man loved and respected by everyone, a solid leader and friend who faces danger and death, coming out the victor. He radiates positivity and warmth in a genuine manner that is rarely seen in modern media.

I grew up in a time with scarce representation, growing up with nothing to relate to, or any kind of validation. If anything, LGBT characters were commonly portrayed as nothing more than comedy relief or painted in a negative light. It was disheartening to grow up, feeling as though the world saw you as less of a person. This was also the dark age before internet became as accessible as it is now, so there was little in the way of validation.

That is why when Shiro was revealed to be gay, not with a full blown fanfare, but with the dignity and grace he deserved, it meant the world to me. His sexuality does not define him, but is rather a part of him, along with all the positive things that make him a wonderful character in my eyes. I am not ashamed to admit I cried viewing the reveal, thankful that I had another reason to love and connect with this character and this show.

The S7 opening episode gave me another piece of validation in the form of Shiro's illness. Though I have been living with a physical disability for many years, as of late, I have found myself struggling. I was also in my 20s when I realised I was hitting my limits and it was a painful thing to discover. However, seeing this kind of experience mirrored on a mainstream show, with a character that still lives, still fights and still strives to do his best is something truly beautiful. After watching that episode, I felt a weight being lifted from me and new found courage in its place.

Shiro is the best representation I could hope for and his dignity, his courage, his humour and support only inspire me to do my best. In his own words, "owning who we are" will only make us stronger.

There is no doubt in my mind that you fought for Shiro's inclusion and for that, I am truly, truly grateful. It is sadly too common an occurrence that there is still a long way to go, but every little step counts and I'm glad Voltron did so. I understand that there are others who have their reservations about Adam, but as mentioned before, I took Shiro as the main focus of that rep and understood that sadly, his relationship did not last beforehand. I will not delve too deeply into this matter as I know others have already talked about it, but my main point still stands.

We have Shiro. He's here. He always has been. He is the representation for myself and many others, and we could not ask for a better hero.

One again, thank you for telling us your story, for giving life to these characters and for reminding me to own who I am.

Lots of love,

Fae A Scottish Voltron Fan

P.S. Go. Be great.

@lettersforvoltron

[manlyman06]

Katara and Toph or how to make strong women

I talk here about stRong in the term of good writing no just strong about badass skills even if this have a important part in their developement.

Let describes each of this character:

You will find the entire article in the great blog: http://femalefortitude.blogspot.com  I advise you to go take a look ;)

Katara :  She should have been the heroine  of the serie in my opinion, she is a young girl who despites her young age take many responsability, she take care of her family and organize the most part of the journey with their group, she is very interesting beacause despites having cleary amother role, she have goals she have doubts and defaults, she thinks about her and have a strong wil.

Her dreams it’s to becoming a Master in water bending, by make her dream comes true she doesn’t hesitate to steal a trarining parchement, that can be view as a bad thing but it is very coherent due to the situation that she see Ang becoming more and more powerful with the water bending, and i don’t think it’s jealousy i think is ambitious, but the moment in the serie where we see that is real deveolop character and not just a female support for the hero is in the  Northern Water Tribe episode.

 Having worked with Aang to develop her ability, Katara seeks a master to train her. Unfortunately, the best instructor available, Master Pakku, refuses her entry to his program. In the Northern Water Tribe, he tells her, female benders learn how to heal while their male counterparts learn how to do everything else. Katara rejects this model, saying, “I don’t want to heal, I want to fight!”

She soon gets her chance; Pakku dismisses her as a “little girl,” and Katara challenges him to a duel if he’s “man enough” to take her on There are in this scene a very important moment in my opinion where Ang says to her “  do not do it for me as if in every serie the female support doing thing only because of a male character, and she replies  i’m not doing this for you i’m doing rhis to teach him a lesson  Aware of her own inferior bending technique and the reality of her inevitable defeat, Katara nevertheless chooses to face Pakku and forces him to fight her

IInn “The Runaway episode,” Sokka reveals that he relies on Katara’s strength and responsible nature. He describes the role Katara has played in his life since their mother’s death: “I’m not sure I can remember what my mother looked like. It really seems like my whole life Katara’s been the one looking out for me.

Her important personal quest is getting revenge on the Fire Nation soldier who killed her mother. Both Sokka and Aang try to dissuade her, telling her that she should forgive the soldier and move on, but Katara says that that would be impossible. When Zuko tells her to save her strength, she tells him that she has plenty: “I’m not the helpless little girl I was when they came.” Implicit in this statement and in Katara’s recollection that her mother sacrificed herself to protect her is Katara’s feeling of guilt. She has immense power now, but she couldn’t protect her mother when it counted. She had to rely on her mother’s strength so that she could one day increase her own. For Katara, a child who not only suspects, but knows that her mother exchanged her life for her own, it would be impossible not to think of her death as Katara’s fault. Tracking down and punishing the man who physically did the deed might allow Katara to feel less responsible.

This doesn’t mean that Katara is above doing terrible things in her quest for revenge and redemption, which becomes evident when Katara bloodbends the man she suspects is Kya’s killer. When it proves to be the wrong man, she appears disheartened, but not particularly remorseful. The weapon that once horrified her is now just another in her arsenal. Still, when she finds the killer, she uses only normal waterbending, which suggests that some of that initial reticence has been restored. She still resists becoming Hama’s successor.

When it comes time to make a decision, Katara decides not to kill the former soldier. She explains the situation to Aang: “I wanted to do it. I wanted to take out all my anger at him, but I couldn’t. I don’t know if it’s because I’m too weak to do it, or if it’s because I’m strong enough not to.” Aang tells her that she did the right thing, and that forgiveness is the first step toward healing. Katara replies, “But I didn’t forgive him. I’ll never forgive him.” She does, however, forgive Zuko. This is a significant point in Katara’s characterization. Whole episodes are devoted to Aang learning how to let things go, and we know that he has had to overcome the loss of his people in order to become a better Avatar. We appreciate his thoughts about forgiveness because we know that he knows what he’s talking about. But Aang and Katara are very different people, and her inability to forgive is just as important to her character as his unwillingness to take revenge. After watching three seasons of A:TLA, the viewer knows that she holds grudges, that she has immense stores of rage, and that the loss of her mother has informed much of her personality. To take violent revenge would be to become Hama, but to forgive Kya’s killer would be to stop being Katara.

Source : http://femalefortitude.blogspot.com/2013/08/the-last-waterbender.html

Toph : Is my favorite in the entire show she is funny, endearing, stubborn or determined ^^, I find in her all the  i love about my girlfriend ^^

Toph’s introductory episode is an explicit rebuttal to the typical portrayal of people with disabilities. The first time we meet her, she is defending her title at a WWE-style earthbending competition as the Blind Bandit. Aang, Katara, and Sokka are initially skeptical; surely a tiny twelve-year-old blind girl couldn’t beat a bunch of full-grown men. However, she can and does, and she is only defeated when Aang unfairly uses airbending in his challenge for the title. 

Later in the episode, after she and Aang have been kidnapped, Toph’s father reveals that his primary reason for keeping her close is her blindness. When Sokka and Katara ask for her help to save Aang, her father states, “My daughter is blind. She is blind and tiny and helpless and fragile. She cannot help you.” Toph, confronted with her father’s low opinion of her ability, says simply, “Yes, I can.” Sokka and Katara offer to help her, but she declines. Then she takes on all seven adult earthbenders at once and she wipes the floor with them.

Toph’s father is presented as controlling and irrational, and the show condemns his point of view. He is wrong for controlling her and for viewing her in terms of what she can’t do instead of who she is. By condemning him, the show rejects the usual approach to the mainstream portrayal of disability. It strengthens this message by having Toph defend her actions with very little reference to her blindness, instead framing the conversation as a matter of agency versus control. She doesn’t explain that she has devised a method of sight that involves reading vibrations in the earth, thereby “overcoming” her disability. Rather, she points out that she’s good at fighting, that she loves it, and that she deserves to exist and be accepted as she is. Ultimately, she joins Team Avatar because they can give her that acceptance.

The shift in Toph’s loyalty from her biological family to her found family forms the bulk of her character arc, and it is best exemplified in the development of her relationship with Katara. In “The Chase,” nurturing team mom Katara comes into conflict with the recently liberated Toph. Toph refuses to help the others set up camp, claiming that she can pull her own weight. The tension increases over the course of the episode, in which Team Avatar endures a sleepless night spent fleeing from Azula’s relentless pursuit, eventually causing Toph to leave the group. She runs into Zuko’s uncle, Iroh, to whom she confesses, “People see me and think I’m weak. They wanna take care of me, but I can take care of myself, by myself.” Iroh tells her that there is nothing wrong with getting help from the people who love you, and she decides to rejoin the team.

Katara tries to re-define their friendship as a relationship between equals by offering to pull a scam with Toph. In this way, she can show Toph that she’s fun while hopefully removing the baggage of projected parental failure from their relationship. At the end of the episode, Toph tells Katara that she was right and asks Katara to help her write a letter to her parents, thereby relieving her of her role as maternal figure as Toph seeks to re-open communication with her actual mother.

The exchange that follows is remarkable. Katara tries to tell Toph that the girls had no idea what they were talking about, but Toph assures her that “It’s okay. One of the good things about being blind is that I don’t have to waste my time worrying about appearances. I don’t care what I look like. I’m not looking for anyone’s approval. I know who I am.” Still, she’s crying as she says it. Katara notices and tailors her response to reinforce Toph’s value as a person, even as she also addresses the unspoken question: “That’s what I really admire about you, Toph. You’re so strong and confident and self-assured, and I know it doesn’t matter, but you’re really pretty.” This response earns Katara the (should-be) coveted Beifong shoulder punch of affection.

This is particularly interesting in light of Toph’s complicated relationship with gender performance. Whereas Katara fights to be allowed access to traditionally male spaces, Toph’s domination in Earth Rumble V and VI proves that she’s already there. As far as we know, she spent all of her time at home with her parents and servants, with regular visits from her earthbending teacher, Master Yu. It’s no surprise that a sheltered, disempowered kid would want to emulate the competitive earthbenders’ overt displays of strength and forge a place for herself among them. Joining their ranks, however, necessarily requires her to immerse herself in their hyper-masculine subculture, based on violence and trash talking. Toph happily becomes a master of both.

ne of the incontrovertible truths of the A:TLAworld is that it is impossible to bend metal. Xin Fu says as much when he tells Toph, “You might think you’re the greatest earthbender in the world, but even you can’t bend metal.” For a time, even Toph believes this. As all of her ploys to get out of the box prove unfruitful, however, she looks to the metal itself. Overlaid on the scene is the voice-over of a guru, telling Aang that all of the elements are connected. Even metal, he says, is just “a part of earth that has been purified and refined.” Without the benefit of hearing this voice-over, Toph nevertheless finds the impurities in the metal box and physically pries it apart. When her captors come back to investigate, she imprisons them in the box, exclaiming as she leaves, “I am the greatest earthbender in the world! Don’t you two dunderheads ever forget it.” In this scene, we see the essence of Toph. She finds herself in a seemingly impossible situation, so she does the impossible to get out of it. She has been locked in a cage -- a metal box, the prison of her parents’ house, the jail of their controlling affection, or the dark dungeon that others assume she is confined to due to her blindness -- and she forges her way to freedom. Ultimately, Toph Beifong is a character who finds empowerment in disempowerment, turning perceived weaknesses into real strengths.

All the analysis belong to femalefortitude.blogspot.com

Source :http://femalefortitude.blogspot.com/2013/08/the-greatest-earthbender-in-world.html

[isourchildrenlearning]

Teacher (band)Aide

I had a role as a Teaching Assistant in the University of Auckland. One of the classes - Maths 153, was for high school students doing a first stage Mathematics paper. I remember the course instructor mentioning a lot of the students were “on the spectrum”. This was fine with me. I spent my high school and undergraduate life hanging out with autists, ADHD folk, queers, mentally ill and disabled people. These are categories I understand, because I belong to them. Spotting a neurodivergent student is relatively easy - whether they have a formal diagnosis or not, I know how to identify the symptoms and what can be done for assistance. This was greatly advantageous when tutoring. I see someone stimming or distracted, I sit down next to them and ask how they’re doing. After a quick chat, I assess what they understand, how they understand, and how I can elucidate whatever material is meant to be covered. I have worked with young children with dyslexia or ADHD. I know they typically like concrete examples, visual aids, and interactive learning. I know they love to explore their own interests and I often exploit this to trick them into learning the mandated curriculum. I know students are naturally curious and love learning and it only takes a little creativity and guidance for them to teach themselves and their peers. In my undergraduate degree I took a course on Philosophy for Children. The course was based on Learning by Inquiry and I was so happy to see a wealth of research was well underway on highly effective and engaging pedagogical techniques, specifically for children. I loved that this concept reflected the way that I both learned and taught. I loved finding out one of the leaders of Mathematics by Inquiry was a New Zealander, Bobby Hunter. I found her research and resources and integrated them into my practice. I ran an after-school Scholarship Calculus tutorial under little-to-no supervision using the skills I had developed and resources I collated and crafted myself. The students loved it. Any teacher should know how beautiful it is to hear a student say “I get it now!” or “it’s so easy, I can’t believe I struggled with this before”. Today I had four periods of shadowing and spent most of my time observing. To my dismay I saw a lot of extremely disengaged students. Most were obviously extremely bored, fidgety, restless. The ones identified with a learning disability were acting out in the stereotypical ways, the others just knew how to mask their disengagement. I felt foolish reinforcing the lesson plan, which itself was disabling student’s learning. I was witnessing a systemic creation of learning disabilities. I cannot in good faith endorse this when I know, from theory, practice, and collaboration, that there are much better ways to actually support the education of students. I heard a student make a nihilistic comment about his climate despair, and frustration with the problems of old being forced upon his generation. This was disheartening, but not nearly as much as his teacher’s dismissal. He continued to fidget and see how far his pen’s spring could be launched across the classroom. I know he would love the mechanics part of the syllabus, but I was not optimistic. In a physics class, one of the students was eager to not work on the simple force diagram; he wanted to explore boat motors and their systems of propulsion. It would be so easy for him to explore this in depth and learn about buoyancy, turbulence, pressure, and forces. I was instructed to make sure he had his laptop shut while he drew the simplified model, so I complied with stifling both him and myself. He would do well with independent guided research and would probably be more confident in presenting to the class if it was on something that interested him. I am once again reminded that school is about learning how to achieve qualifications, rather than learning how to learn. It is a depressing thought. I want to work on developing individual lesson plans for students with hyperfixations. I want to work on raising class engagement. Learning disabilities tend to arise much the same way a locomotive disability arises in a space without wheelchair ramps or elevators. I do not want to be a bandaid on a systemic disability. I cannot in good faith endorse the status quo.

[its8simplejulesblog]

As I Write This

My laptop is on my lap and my feet are crossed on my brilliantly teal blue yoga mat. I often think about what in my right mind made me interested in ever starting yoga but I’ve found in life that there are some things that don’t need to be explained. I had an interest in pursuing it and I did, it’s as simple as that. I didn’t, however, ever think it would turn into what it has turned into today. 

When I tell you that I practice yoga what do you immediately think of? I know initially for me I thought essentially of vsco girl contortionists which, unfortunately for me, did not match my vibe. I am neither flexible nor necessarily affluent and aesthetically pleasing. In fact, I still can’t touch my toes (September 6th update: I can touch my toes now! Vsco girl here I come). I thought of entitled white women that rattled on about manifestation and things that truthfully sound like a load of garbage. However, I went in with an open mind and that’s all you must do. Your practice is entirely selfish in the best way. It is about you and only you and your metaphysical connection with yourself. 

So what does that look like? Well I’ll be the first to tell you that I don’t look like a pretzel all of the time..if ever. In fact, the important part about yoga is that it is equally a connection between mind and body. It is you talking with yourself and quieting your mind and if that takes you touching your feet to your head then fine, but that’s not the case for me. Quite simply, yoga and meditation take the form of acknowledging your consciousness. There is often the misconception that you have to meditate only in utter silence sitting cross-legged with your eyes closed. That’s not true. I know people that are most appreciative out in nature, and they meditate while walking. Some mediate while playing sports or playing the guitar and laying down on a carpet. The importance is that you take the time to recognize and prioritize the thing that makes you most content. 

In the heart of my minds eye (Julia wtf..why are you speaking like this) I see yoga and meditation as voluntary gratitude. This is something that I really came to define as my personal practice. This is why I enjoy and look forward to yoga and it has absolutely nothing to do with whether I can touch my toes or not. As my own personal definition, I recognize yoga as experiencing and accepting the world exactly as it is and this often begins with the metaphysical, rather than the physical. 

In everything that we do, we can direct our thoughts. Whether you currently think so or not, your body will never feel good if you don’t mentally feel good. I know a lot of people that use the excuse/ example of saying, “well when you get sick your body deteriorates and because your body deteriorates you have to stay inside and because you have to stay inside you can get sad and depressed.” To which I would argue that never in a thousand years would I say that being sick in and of itself causes me to be more sad than I already might have been. If anything, it just highlights whatever negativity was already there. 

Our bodies are representations of the internal, not the other way around. I believe this is why I find psychology and sociology so intriguing, and are frustrated when it is refuted and defined as a “fake science.” In my eyes, empirical science is only half of the story. I know that while data is important (I DO always gush about statistics after all) inquisitive research means even more. In our minds we are all different. We experience the exact same situation differently, we react to them differently, this is something that could never be empirically explained and to that I revere the scientists that are denied credibility solely because they cannot produce equations on paper. 

If you’re a close friend of mine you’d know that I’ve been struggling with my self worth recently. This manifests itself in my constant requests for confirmation that my friends are not bored of me and that I’m still interesting and worthwhile. This feeling is like a groundhog because as quickly and passionately as it pops up it will go away and I continue with my life, but that’s the thing about the subconscious, it doesn’t “go away”. When Punxsutawney Phil announces the coming of the next season he doesn’t just pop underground and cease to exist. Every single thing that we worry about is housed in ego and as our egos like to title themselves our “identity” you can’t shut that up and suddenly become a shell of a (wo)man. 

For that very reason, I’ve come to adore the job that I do as a social policy research assistant. At it’s very core is the act of interviewing those that you would never even THINK you had anything in common with. The project I’m currently working with is with the elderly and disabled, two things I’d pretty confidently claim I am not. And yet, constantly their words set of alarms in my mind. Not a warning bell, not a “get the hell out of there it’s going to suck to be old” bell either, but moreso, a glimpse into all that life has to offer in the most inspirational way. 

Yesterday I was speaking to the kindest woman I have ever spoken to. She was orphaned at 17 and her mother had died of cancer and she had been suffering from a disability to the point where she is currently homebound at the age of 57. Was this disheartening Yes, but what did we talk about? We talked about the fact that she had multicolored crystal prisms all over her house. We talked about the fact that whenever she was depressed she reminded herself that everything she was feeling was temporary and she would see color again soon. We talked about how because of all the things she had been through she developed a passion for service through the mother of her ex-boyfriend who took her in and forced her to carry on. We talked about how she was proud of me and thought I was perfect for this inquisitive role (remember I have never met this woman) and should continue on being curious and kind as I have so much life ahead of me. This is what meditation is all about. You don’t have to sit in silence, but rather reflect on what the world around you means. 

She told me she wanted to give me a prism :) 

I mediate through reading. My entire LIFE books have been healing for me. I have found that I look forward to being in my own head and learning constantly learning about anything and everything because every book, in its own way, is applicable to life. And its for that reason, when my dad and I walked into 2nd and Charles the other day, that I had this urge to look for “Eat, Pray, Love,” by Elizabeth Gilbert. To be truthfully honest, I had seen a tik tok about it about a week before, that was kind of like a parody for the movie trailer and for some reason it stuck with me to the point where an entire week later I was roaming the aisles for this book. 

If you didn’t know, 2nd and Charles is a second-hand book store so there is never any guarantee that something you’re looking for is there. In fact, I had been roaming for about as long as my impatient temperament could take when I turned around by accident and there it was on the tippy top of the shelf behind me. I couldn’t tell you what drove me to grab this book at this exact time in my life, but I have never been more thankful for a book in my entire life. 

Elizabeth Gilbert simultaneously writes like God and your older sister. Her language is divine and it rocks you from the very essence of your soul but she’ll also talk about how much sex she’s had and how bloated she was after eating more pasta than anyone should ever eat and how she didn’t give a fuck. And, I don’t do this often, but I found myself repeatedly stopping to type quotes in a note on my phone. If you haven’t yet heard of it (I’d be surprised) but “Eat, Pray, Love” is about a woman in her mid thirties who lived the ideal life in New York but ended up going through a nasty divorce with her husband and went through a complicated affair after the fact. 

I think that a lot of people misjudge this book as being equivalent to a rom-com like cringey love affair of superfluous nonsense and un relatable emotional sentiments. That couldn’t be further from the truth. This book was raw. She is often sobbing on her bathroom floor or crushed with suicidal depression. She is infinitely lonely and feels so small and it is nothing short of a mirror into all of our lives at some point. She goes to the countries to work herself out of this nightmare after a notably horrible episode on her bathroom floor where she finally admits to herself that she refuses to live her current life anymore. In Italy, India, and Indonesia she details her experiences in the pursuit of pleasure, devotion, and balance of a means of essentially finding her purpose. 

When I say pleasure, you’ll probably think of Rome and romance and sex and pretty people. Those things definitely weren’t absent in her description (Except the sex because she decided to remain celibate for the year), but her pleasure presented itself in the most genuine form. Through her appreciation and slow consumption of good food, her slow meander through Italian architecture, her sunset discussions with new friends. These are things all the more important to being content. 

I personally enjoyed her description of India the most as it brought me back to my experience with yoga and the individualized nature of the practice. Liz studied at an Ashram (a religious temple) under a guru for multiple months. It is at first torturous for her to find the the faith and courage to let herself go to some divinity that is not tangibly seen but she so acutely describes how important it is to quiet your mind to the chaos of the world. Once you do so, you really realize the lack of weight it ACTUALLY has on your life. This means that the way you perceive your situation will dramatically change the way you act and feel and treat others, something I have constantly been repeating in my other posts. Similarly, one of my favorite aspects of this section is her description of religion not as a border of political and historical idol complexes of rules and punishments, but a thin golden thread woven together with hundreds of other thought processes to form a spiritual connection between self and the divine. 

In Indonesia she balances the two through helping others. I won’t go too much into detail but everything is so perfectly combined. So much so that I have tenfold more a desire to go to these three places than anywhere I might have mentioned before in my discussions of travel now. 

In reading her words, she mad me cry and compose myself only to cry even more. That’s the beauty of a book that is so well renown, yet applies to every reader’s individual experience. I felt like she was addressing me directly. I really felt like someone or something was speaking through her directly to Julia Larock and I have read plenty of books and have never once felt like that. Specifically, here are a few quotes that really punched me in the face: 

“There are only two questions that human beings have fought over, all through history: How much do you love me? and Who is in charge?” 

“Vipassana meditation teaches that grief and nuisance are inevitable in this life, but if you can plant yourself in stillness long enough, you will, in time, experience the truth that everything (both uncomfortable and lovely) will pass”

“How do the survivors of terminated relationships ever endure the pain of unfinished business? From that place of meditation, I found the answer- you can finish it yourself, from within yourself. It’s not only possible, it’s essential”

And so as I finished inhaling her words after hours and hours of reading today I decided to try a new kind of yoga. Not that I had been doing it incorrectly before, but I wanted to focus my meditation more on gratitude. So I rolled out my mat and put on my meditation music playlist on spotify (don’t make fun of me it’s a real thing and it will change your life) and just sat. I originally tried to close my eyes, but that actually distracted me more so I kept them open (that’s the thing about meditation, you just do whatever works for you) And this time I actually let my mind wander, but only to a positive place. A place of thankfulness and peace. A place where every negative aspect of my life still existed, and I let it enter my mind, but it never once turned into the chaotic anger that it once was, the shame was there but I controlled it, the hurt arrived but it was nothing compared to what else I saw. 

I saw Ryan giving me the longest hug of my life while I sobbed in the West Chester parking lot, I saw my mom stroking my hair while I sat on her lap and told her about my day, I saw my brother and I playing rock band and taking it way too seriously, I saw my Disney roommates and I celebrating Christmas together, I saw Steven and I discussing how similar we are, I saw myself walking hand and hand with some of the young children I met on the dirt roads after church in the Dominican Republic, I saw Lauren and Steph and I screaming when we saw each other in the Longwood parking lot, I saw walking on the boardwalk with Lauren and Amanda scaring me from behind, I saw myself playing golf with Graham and Cameron, I saw myself having photoshoots with Jaelyn, I saw myself handing out drinks to Brewed customers that wanted nothing more than to tell me their entire life stories, I saw all my robotics friends supporting each other at competitions, I saw all of my fellow TFA interns drunk at our staff social (oops ;) hehe ) I saw my dad telling me he was proud of me, I saw Zach taking care of me even though we just met, I saw the hoards and hoards of kids in China writing me love letters and calling me a Disney princess, I saw the zoo in Australia where we took little Ethan for the first time, I saw Eloise telling me she was pregnant and I could be an aunt to her daughter, I saw my cousin Genevieve telling me that she wanted me to come to Cape Charles with her family because “whenever you’re with us the vibes are good.” 

And I literally just sat there and cried. 

Maybe it would have been a little bit eerie if anyone walked into my room, but it was a silent cry. I wasn’t sobbing or dramatic or weepy, there were just tears, because there was so many thoughts flashing in my mind and I probably only sat there for 15 minutes. And towards the end, over top of it all, I kept hearing the words “I’m speaking to you.” It was kind of like a mantra because I heard it in my own voice, but it wasn’t necessarily coming from just me. It was like in my own voice I hear, “I’m speaking to you, I believe you, this love that you see in these memories, hold onto that because this is all I want for you.” 

And that’s all I want for me too, and for everyone really. Because at the end of the day when we better ourselves we better everyone. 

When I finally dragged myself off the mat I picked up my phone for the first time in a few hours today. There was a text there from Casey, who is the youth group pastor with the group I used to be apart of at UD. He told me that he was thinking of facilitating a mental health support group this fall and he wanted me to advocate for it and be a part of spreading the word about it because I’ve been blessed with so many connections. What a situationally ironic time for a text like that, after just sitting in gratitude for those in my life. I told him that I’d absolutely love to be a part of that and now here I am, writing this. 

I’m not going to try to be disgusting and poetic and say that my life is changed and nothing will ever be the same. I’m positive I’ll still get upset and angry about the same things in my life. The difference though is that I don’t see that as an impenetrable barrier, but more like a hurdle where all you need to do is put some pressure on yourself to get yourself in the air. 

And once I’m in the air I’ll bring out the prism that was just given to me and it’ll create color. 

[rairun]

It's been over a year since I came out as bisexual, and it's been so interesting to catch myself recasting old stories and adjusting my understanding of my formative experiences based on the fact that I am queer. Sometimes it feels almost too neat, and I worry that I'm deliberately making connections that maybe I shouldn't be making - maybe my history is more fragmented, maybe it should read less like a narrative and more like a disparate collection of incidents. But then again that's what being human is always like. We tell stories. We try to make sense of things. This is what we do.

Coming out as bi has been important to me for two reasons - first because "straight" hasn't been a good description for my feelings since at least my early twenties. I was tired of defaulting to straight simply because it was the default; I was tired of questioning whether I was gay enough, of worrying I would become an appropriative asshole if I identified as bi (as bi people are wont to do). The other reason coming out has been important to me was that it made me feel welcome under the queer umbrella, and suddenly so many queer things about myself found themselves a home.

Last night I found an "It gets better" video that I watched seven years ago. As of November 2017, it only has 600~ views, but it is by far the one that touched me the most. I was twenty-six at the time. I hadn't been bullied in what, nine years? And I had survived. Things were better in many ways. But I still felt so fundamentally alone. I knew like-minded people existed - I'd met a couple who had changed my life -  but by my mid-twenties they seemed like such a miracle, and so impossibly rare. I didn't think of myself as queer at the time, but Alicia's words - and her soft-spokenness, and her gentle-yet-resilient tone -  made me feel like she was speaking to me.

And yet she was not. Because I wasn't queer, or I didn't know I was queer. I didn't resent being excluded from the club because I'd never stopped to consider I might belong there. When I watched Alicia's video, I cried because I felt those people were my brother and sisters, and I wished them happiness and a place in the world, even if their place was not my place (it was, but I didn't know that). I felt left behind like all the queer people who never got the chance to see things get better.

Now, when I look back on my experiences as a teenager, it all seems so clear: they did all those things to me because I was queer. That's the simple truth of the matter. Saying this feels like fitting the last piece of a puzzle. It gives name to a reality I understood but had no way of expressing without taking my time to describe each individual piece and its relationship with the others. Now I take a step back and suddenly the whole picture emerges.

What makes me wonder if I'm being simplistic is that I know they didn't do those things to me because I was bi. They didn't know I was bi. As a teen, I didn't know I was bi either. And I didn't look or sound gay enough for them to seriously think I was the Portuguese equivalent of a "fag".

Their go-to insult was "nerd", among other similar words. But I was clearly not singled out for my interests - half the kids who harassed me daily were Magic: the Gathering-playing nerds. They also used some really ableist language (because I have a minor chest deformity), enough to have left me with a wonky body image probably forever; but objectively, my chest didn't make me disabled, and I doubt they'd have picked up on it if I weren't a target for other reasons.

The types of abuse weren’t always the same (insults, physical violence, sexual harassment at least once, abusive “friendships” where I was always deliberately reminded of my lower standing), and it wasn’t always possible to draw a straight line between them and my queerness. But it was very clear I was a target because I didn’t take part in the whole business of growing up as a cishet guy.

I remember liking another "it gets better video" in 2010 - I think it was Hal Duncan's. At some point he says, "You only have to walk past a group of people laughing to tense, to shrink into yourself in shame and fear, because they've ground you down to the point where you associate the very sound of human joy with your humiliation." And this is such an accurate description of my own experiences that together with everything else, it's very hard not to conclude that I was a target because I was queer.

Queer. Again, not bi. They didn't know I was bi. It all came down to me not doing sexuality as a straight boy should - they just didn't have a name for it. I remember some of the other "nerds" were given a hard time too, and they mostly wished they were popular. Many had a proto-MRA mentality that made them feel wronged because girls wouldn't give them a chance. I just wanted to be allowed not to want any of that in peace, and it seemed like I was the only person who felt this way.

I could talk about some of this in terms of genderqueerness too. I don't overtly identify as non-binary, and masculine pronouns are generally OK by me, but I won't say you are wrong if you think of me as non-binary. I guess gender could give me a "legitimate" outlet to think of myself as queer too. But if I were to be even more specific, I'd say a lot of my early experiences fall under the aro/ace categories; a lot of my struggles had to do not exactly with shunning intimacy, but with being very uncomfortable with the ways our society structures sexual and romantic relationships.

The other day I felt a bit disheartened by all the derisive comments on the "Is There Something Queer About Being Single?" article in the NYT. I mean - no, of course simply being single doesn't make anyone queer. The derisiveness got to me though, and trust me, I can relate to the fear of queerness becoming meaningless if everything is considered queer - we'd lose the word and the unity it brings, but the world would still uphold all its discriminatory structures. But you know, maybe there is something queer about eschewing traditional couplehood, or even couplehood altogether. Maybe there is something queer and disruptive not only in wanting sex with the "wrong" people, but also in wanting it differently. Maybe there is something queer about searching for a different way to love and live.

I'm bi. Despite all the biphobia that still exists, I'm "allowed" to be here.

But what if I were not?

I think people can be too quick to bring up the cases that are most easily dismissed - so is this straight white dude queer now because he likes to be choked in bed? Is that guy over there really supposed to be queer because he has sex with a different woman every day and calls himself poly? And they forget that there are so many kids and adults out there with much more complicated histories, who have struggled with their sense of identity and their place in the world for so long, and still haven't found it. If someone hears the word "queer" and it stirs something up inside them that they can't even explain, if it speaks to them like nothing else has, are we supposed to act as gatekeepers and tell them no?

Are we really supposed to turn them away because a couple of assholes think being queer is a fashion accessory? And who is to say who is who? Until very recently, I was one of those people who felt lost and alone and like they didn’t belong anywhere. I spent all of my twenties in that place, and maybe things could have been different. Maybe they can be different for others still.

[dxmedstudent]

Dx, sorry if this is a bit of a downer. I have literally been trying to stop my eating disorder for a couple of years. I've read so much and tried so hard. I always depress about it. Basically I eat like no tomorrow. Started bc I dieted on and off. Now the only thing that's exciting is food. I used to be interested in a lot of things but now I'm always tired AF and just cba to do anything. Counselling etc I feel like a fake bc Im not anorexic. How can I shift out of this??

To continue prev ask about ED. My life is completely blunt and I know I’m being a terrible friend and family memb. My studies are affected and I don’t know how I’m still in med school. I constantly think that that’s it now, I’ve become fat and worthless and I’m absolutely disgusted and ashamed with myself. I’ve honestly tried and am at the end of the line. I had art, dreams, ambitions before. Now I just wanna eat, digest, and eat more. Why am I so disgusting? And why am I so alone in this?

Dear Anon, there is no need to apologise. I’m glad that you feel you can talk about it with someone.Society and food have a very warped relationship, which can make it really hard for us to develop a healthy relationship with food, and with our own self-image and weight. It makes things truly difficult, and many of us can really struggle with our relationship with food and our bodies. Not everyone has an eating disorder, but I think these things complicate almost everyone’s lives to some degree. But disturbingly, we normalise really unhealthy dieting fads and body image to the point that society doesn’t recognise the effect this is having on many of us. We can try to avoid alcohol or smoking if we have a problematic relationship with them, whereas it’s much harder to avoid food. You’ve been working so hard, at a battle nobody else can see. Even though you’re struggling, you have held on for so long, and  I’m so proud of you for taking care of yourself, and doing your best, especially when you’ve felt so alone. To deal with that, and then have to face a busy life, like med school, is exhausting. Eating disorders are not uncommon, and altough anorexia nervosa is the most common one, it certainly isn’t the only one. And you deserve proper support and help, no matter what your disorder is like. The effect it is having on your life is significant, and your feelings are valid. You are not a fake. There are so many ways in which our eating can be disordered, and our mental wellbeing can be compromised by our relationship with food.You’ve worked so hard on your own to try to make things better, so I can see why you’d feel so disheartened because your progress has not been as good as you would wish. It’s hard when we try so much but find we’re still struggling. It’s not that you’re failing, it’s that some tasks may not be meant for us to handle alone. Sometimes we can cope with things ourselves, but sometimes we need a bit more help from others, and I wonder if perhaps you’d benefit from more support or counselling or therapy, with people who are qualified and can help you to work through the difficulties you are facing. Please don’t be put off just because your disorder is different. There is help out there. There are various treatments, including some very different forms of talking therapy, which can be quite useful in very different ways, because they can help us to work on the underlying thought patterns which cause us problems. But also sometimes medical treatments like SSRI antidepressants can have a place in treatment.  I think it’s important to be honest with university when we are struggling. Both because they can put us in touch with support, and also so that they can recognise that if we are struggling due to illness, that it is not due to our lack of trying. Particularly if you feel that it’s affecting you to a degree that it’s affecting your studies. Make use of every scrap of support that university will give you, and engage with their disabilities team, as well as your tutors. I’ve known people struggling with all sorts of mental and pysical illnesses in med school (EDs included) and although egaging with uni is initially stressful, in the long run it gives you more support and protects you from being discriminated against or left out in the cold when you are struggling the most.The things you describe (feeling down about it, lack of enjoyment, not being able to do anything, fatigue, feeling completely blunt) suggest that you may also be depressed, is this something you’ve considered? I know that the ED certainly has a huge effect on your life, and it sounds like it may be affecting your mental health as well. Please consider going to your doctor and discussing this aspect as well. Because depression is also something that can affect how well we cope with our other illnesses. And it’s something we can receive support or treatment for in its own right. I would definitely advise you to discuss your ED with the doctor as well, so you can make a plan for treatment. It will be a slow process, but by one step at a time you can work with the right people to slowly regain control of your relationship with food. I have friends who are recovering from EDs so I want to tell you that it can be done. It can be a huge part of your life for a long time, but it does not have to define you. You are so much more than your relationship with food. You’re a wonderful person in your own right. I know you’ve mentioned that you have a lot of interests; it might help if you tried to bring them slowly back into your life, a little bit at a time. However, if we’re feeling depressed or overwhelmed, it can be very difficult to find the motivation, and it can be difficult. I hope that getting the ED a bit more under control might give you more space for you to explore things that make you happy again. I’d also recommend seeing your doctor for another reason; there may be other reasons why you feel tired and listless. Perhaps it might be worth considering a ‘fatigue screen’ of blood tests for things like your thyroid, or various vitamins. Because these things can affect your mood/make you depressed and resort in longterm exhaustion, and because they are easily treatable if we know about it. Particularly if we’re struggling with our eating and may not have the healthiest diet. Having a mental illness doesn’t mean we can’t also have a physical one, so if you are struggling then it’s always worth looking for physical causes which might be contributing. It’s important to look after all of you, and to make sure there’s nothing else that may be contributing. You’ve tried so, so hard, and I’m proud of you for keeping going. You aren’t disgusting, or hopeless, or useless, whatever the voice inside your head says. I just think that you need more support, because it’s an incredibly long, tiring battle that I think nobody should have to face alone. I hope you have support around you, and people in your life that you can talk to about the most challenging things. And I hope you reach out for more support or treatment, because I feel it may make a big difference for you. Most of all, I hope that your path to recovery brings you peace and happiness. Good luck, and let me know how you get on.

[mel-wheelz]

History and Heroes

Repeat 

By: Melanie 

Sun goes up

Sun goes down

Axis of the Earth, spins round and round 

No matter the date, no matter the rhyme 

The thing most eternal 

Is the passing of time 

Sun goes down

Sun comes up 

Sunday July 23, 2017

 I’ve been thinking a lot about what I’d like to do with my future of late (as I’m sure is often the case with most in their twenties) or perhaps most of us in general. One of the things I like to look to when I’m contemplating the nature of my future is a bucket list I made for myself when I was in my early teens. Now this list did have a lot of definable goals in it. There were things like: finish high school, get a job, get into university, pretty basic third world, human stuff. But then, then there were the more indefinable goals like: change somebody’s life, or become somebody’s hero. 

 Considering that today is day four of San Diego Comic-Con International I thought I’d take some time to look at that last one: become somebody’s hero. Now, as a (maybe) 13 year old kid, clearly my ability to set definable goals was a little off. Putting that you want to become somebody’s hero although an admirable goal is lacking the distinctive measures of success that are a part of successful goal setting, buuuut, a recent conversation I had with a friend of mine, combined with the everlasting Comic-Con debate that is DC vs. Marvel got me wondering. What does it mean to be a “real hero”, are they people who always do the right thing, are they people most willing to stand up for themselves, are they flawed like  the rest of us? And, if in fact a “real hero” is without flaws what does that mean for the rest of us? Can any of us really be a hero if that’s the case? 

 I’ve been reading this book lately called “The Song of Achilles” by: Madeline Miller. Achilles, and his story is one that resonates a lot with me for a lot of reasons. The most important is the fact that Achilles himself is often most remembered for his status as a demigod (half human, half God) with a weakness in his ankle otherwise known as what is today called the Achilles heel. As someone with a disability, I’ve always found it a little disheartening to know that there existed very few superheros who had disabilities or challenges resembling my own. In reading this book, not only did I find a story I could not put down, but I also found Achilles’ story to be interesting because despite his heroic place in Greek mythology Achilles had real challenges, and truly human flaws. Flaws that not only I, but I think any of us could relate to. Truthfully I found that I wasn’t most proud of his massive accomplishments in relation to his role at Troy (which I am informed by my brother is a way that all you non-book worm people can enjoy this story). In fact, I found his most heroic quality to be his human flaws, and his struggle to overcome them as the son of a goddess. 

 Marvel has in fact taken its fair crack at providing us with superheros with some degree of disability (and I do mean disability, not weaknesses due to powers like Superman’s weakness to green kryptonite) but, personally I think there’s room for improvement there too. I’ve always loved the X-Men, and the idea that their mutant powers can be seen as both a strength, and a weakness when they confront normal society, but their leader Professor X has always presented a problem for me. Sure, Professor X is cool in that he has created a school to support those living with these mutations, but his place as the Professor has left him largely in a teaching role. A teaching role, that means it is often his students, and not X himself who are seen as the heroes. 

 On the flip side of that same coin is Daredevil. Though I like the idea that his blindness, and the abandonment of his mother have left him bitter, and quick to anger (a truly human trait); many of Daredevil’s superpowers are in fact, so overpowered that they compensate for his blindness almost completely. This is why, to me, a true hero will always be one who has human flaws (be those physical, emotional or mental) but who is able to overcome them not just with their powers, but also with human things like: determination,or hard work. Perhaps, such an assessment of what a superhero should be is a bit of a buzz-kill for some of you, but in the words of my friend “the best thing about real heroes is that they are flawed and real”. We can see ourselves in them somehow, and they are not the simply: unmatched brutes of strength, speed or power to which we can never relate. 

That’s why I’d like to dedicate this post to my newest mythological hero: Achilles! He’s no Spider-Man, but until Marvel can show me a better hero he’s the one for me! 

Happy Comic-Con Tumblr! 

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The Fosters: Our Thoughts on Episode 4x17 “Diamond in the Rough”

Time for another twin recap of The Fosters!  As usual, look for @tarajean621‘s insight specific to brain injury in italics below:

Why Are You Still Detectiving?  Seriously, Callie.  Listen to Daphne and stop it.  You don’t need to be out getting rando signatures because you think Troy is a liar.  Leave your Justice for Jack shirts at home and leave the detectiving to the professionals.

Excuse Me For Thinking My Boyfriend Would Want to Help/I’m Sure He Does But That Doesn’t Mean Getting His Ass Arrested:  Tell her, Daphne.  Callie’s entitlement is super annoying.

They’re Not Scared of Me Yet.  They Stupid:  Right, you are, Daphne.  And I love seeing you on the other side, leading the GU girls!  How exciting!  I’m so proud of you!

Where’s the Picture/Nope.  No Picture This Time.  What’s It Say?  I have soooooo many feelings about this scene.  It is obvious to me that Lena has been tipped off about Jesus’s reading difficulties.  For the record, this is a really crappy way to confirm said difficulties.  I would even go so far as to say that it’s cruel.  Forcing Jesus to do something he is not physically able to do?  Actively humiliating him, when a one-on-one conversation would accomplish the same thing?  I expect far more of Lena, who has a background in child psychology and education.  

Also, just the way she is speaking to him - terse and not at all warm.  The whole situation is super disheartening.

I Have a Headache, Mama/No, You Don’t, Jesus.  You Can’t Read It, Can You?  This is a huge issue for the disabled community.  Nondisabled people presuming to know a disabled person’s body and experience better than the person actually inhabiting said body, having said experience.  Nondisabled people dismissing our legitimate symptoms because they seem like an excuse or come at an inopportune time.

For the record, headaches are common post-brain injury.  (I would say that it was more surprising if I DIDN’T have a headache in the months after my injury.)  They are also a common symptom of visual disturbances post-brain injury like those Jesus is experiencing.  

Lena is not in Jesus’s body.  She cannot feel what he is feeling.  Therefore, it is ludicrous for her to dismiss his legitimate pain out of hand.  And to follow it up with, “You can’t read it, can you?” She could have phrased that question a million different ways that were more sensitive to his self-esteem.  Because these “little” comments and dismissals?  They chip away pieces of us.

Why Can’t Anyone Fix Me?  This line hit me right in the heart.  I’ve been there.  It is a legitimate question, especially in light of all the focus on what he cannot do or needs to improve on in therapy.  I hope Jesus begins to realize that some of his abilities will come back with time.  And some never will.  And that is okay, despite what he is constantly being told about “getting better.”  His abilities do not define him.  He is different now, and that is okay too.

The Girl’s Name is Diamond.  She’s the Victim, Not the Perp.  A Lot of These Kids Come Out of the Foster System.  They’re Starved for a Sense of Family.  Some Love: Hope Olaide Wilson is clearly talented.  They cast her really well.  

Who’s Russell?  Sure He’s Not Your Pimp?  He Didn’t Brand You?  Okay, wow, Stef.

There’s Nothing Wrong With Jesus’s Eyes.  It’s His Brain That Can’t Read.  The Doctor Gave Him These Glasses to Help His Brain Sort Things Out:  Prism glasses are a thing.  But wow, way to out Jesus’s medical info to the sibs.  For a show usually so focused on Moms respecting each kids’ private information, this was disappointing.  (Assuming, of course, that Jesus did not give off-screen permission for her to share.)

Also, just the language used in this scene is so negative.  “Wrong,” “can’t read.”  How about “Jesus’s eyes are fine.  His brain is still sorting things out, and the glasses should help with that.”

You Look Like a Minion/They’re Giving Me a Headache:  Making fun of adaptive equipment is never cool.  We would never consider making fun of someone’s wheelchair - glasses are no different.  

Yes, Brandon is Jesus’s brother.  Yes, brothers poke fun.  This instance is different because Jesus needs the glasses to (hopefully eventually) alleviate symptoms such as headaches, aching eyes, motion sickness, visual overload, difficulty with depth perception, visual attention, visual scanning and visual memory.  By insulting Jesus’s appearance, Brandon is implying that Jesus’s adaptive equipment is unsightly.  And it suggests that a nondisabled person’s comfort is of utmost importance, superseding even a disabled person’s medical necessity.

This is not even to begin to speak about the issues around identity and brain injury.  Brain injuries are complex because, while they impact our abilities, they also impact how we think.  And how we think is very closely linked to who we are.  Often, post-brain injury, we do not “feel like ourselves.”  This can be very frightening, because if I don’t feel like “me,” then who am I?  I may not like the way I’m acting or the loss of my abilities or myself.  So, then why would anyone I love continue to love me?  Comments like Brandon’s, small as they may seem, really drive Jesus’s self-esteem down even further.

Really, Brandon?/Minions Are CUTE/And You’re a Jerk:  Nice half-hearted reprimand, Lena.  

Is He Getting Worse?  I Noticed That His Speech is All Messed Up Again:  Mariana, seriously?  This is awful.  If you’re wondering about Jesus, you know who you can talk to?  Jesus.  Not Mama.  And you don’t have to make comments about how ‘messed up’ his speech is.  This just makes me think of all the other times Mariana has come to Moms regarding something about Jesus.  The first thing they did, always?  Was to call Jesus into the room to talk to him, too.  Now?  Instead of going to him and including him in the conversation, or telling Mariana you’ll discuss it later when Jesus is up (and if he wants to talk about it) you’re having this whole conversation behind his back.  To quote Ellen DeGeneres: “No, I say to that!  No!”

Also, Jesus’s speech is “messed up” because the stress of admitting he could not read was ridiculously high.  It’s called aphasia, Mariana.  Look it up.

Hey Can I Get the Letter I Wrote to Your Brother?  Don’t Want Anyone Else to Find It:  Again, Emma.  This would be something to ask Jesus.  (But we know by now that Jesus has been sent from the room to lie down, and it’s the perfect time for Lena to keep talking about his medical issues behind Jesus’s back...) <--- Sarcasm

Not cool, Emma.

That’s the Thing With TBI, It’s Two Steps Forward, One Step Back.  The Doctor Isn’t Worried About It.  The Only Worry is How it Will Affect Jesus’s Morale:  This makes me think that at least part of this conversation with Jesus’s doctor was held without him being present.  And how about not discussing Jesus’s medical stuff in front of his brother and sister without him there?  If you think he does not want to talk about it, don’t talk about it...especially with the siblings...come on Lena.  With Stef, I understand, as you’re his parents and that conversation would be held in private.  But as it stands now, it’s just you guys, talking about him behind his back.

Also, I take issue with the whole nebulous idea of “two steps forward, one step back.”  Again, it takes legitimate issues that brain injury survivors deal with, and shoves them off to the side.  

Okay So Maybe Comparing Him to a Cartoon Character Isn’t Very Helpful/Sorry:  Mariana got an apology from Brandon, but Lena wouldn’t even call Brandon out for that in front of Jesus, so Jesus thinks it’s okay for the sibs to make fun of his adaptive equipment.  Okay, then...

Yes, Mariana got an apology from Brandon.  You know who didn’t?  Jesus.  The person Brandon actually insulted.

Kids Without Permission Slips, How Many Were There?  Uh-oh, Lena.  And what’s Drew (new acting vice principal) doing looking for kids randomly commenting about LGBT sex ed class.

Monte Still Has the Option Not to Pick Up My Contract, and Drew is Gunning for My Job:  Ahhh, this is so terrible!  Lena, you need your job!

Whether I’m on Leave or Not, I’m in Charge of Accreditation, Drew Knows That:  Ooh, something feels shady.  Why is Drew leaving Lena off the accreditation meeting related emails?

I Think You Look Cute in Your Glasses.  Like Clark Kent/You Mean Urkel?  Mariana, you’re trying to boost Jesus’s morale.  Too bad it’s coming directly after Brandon’s assy comment.

We see Jesus’s self-perception here. :(

You’re Gonna Get Better/You Know, the More People Say That, the Less I Believe It?  The problem with comments like this is, what if he does not have a miraculous recovery?  Most brain injury survivors have long-lasting symptoms.  By constantly “encouraging” Jesus in this way, his family is likely amping up his anxiety.  Because what happens if he does not fulfill his family’s expectations?

Are You Drawing Again?  Can I See?/No:  I love that Jesus’s drawing is still a thing!  I’m excited.  I want to see it, too.  But Jesus said no, so we should respect that, right Mariana?  Right???

That right-sided tremor must be improving, looking at this drawing.  

We Used to Always Want a Magic Treehouse of Our Own/I Wish That We Had One.  I’d Go Back in Time Before Any of This Happened:  This is a common feeling - wanting to go back to Before.  I hope Jesus can begin to reconcile that he is in the After now, and that he can build a life here.

You Know Who Isn’t Alright?  Jesus.  He Needs a Project.  Something to Look Forward To.  And I Have an Idea:  Of course, you do, Mariana.

Jesus Has Been Watching This Show About Treehouses and He’s Been Designing His Own Sketches and They’re Really Good.  See?  What if We Asked Gabe to Help Him Build One:  I’m so on board with you through this point, Mariana.  As Moms would need to know.  And assuming you spoke to Jesus about this since you have his sketchbook.  (But of course, we’re not privy to that conversation.  Only the ones where Jesus is talked about.)

What If This Was Jesus’s Senior Project?  On the one hand, I like this because it shows that Mariana has confidence in Jesus’s ability and his future, but it’s a lot to be planning and I do wonder if Mariana talked to him about this aspect before pitching it to Moms..

Why is Jesus not included his own potential senior project idea?  This is getting old, family.  Just saying.

I Don’t Think It’s a Bad Idea.  It Could Help Jesus Get Out of His Depression.  It Could Help His Brain Make Connections and the Design Is Pretty Cool:  Because you’re Lena and everything has to be about rehab.  It’s never okay for Jesus to be legitimately struggling...

AJ, You Are the Priority Here:  I’m glad AJ and Mike finally talked about why Mike asked AJ if he was okay with Mike adopting him.  And I have to say, regardless of what Mike says, it’s gonna be hard for AJ to accept that Mike really wants him, and doesn’t just want Ana to be able to move in...

What’s Wrong With My Shirt?  It’s Got a Bunch of Tiny, Little Foxes on It.  See?  Hahaha, Brandon.  Seriously, though.  The problem is not your shirt.  The problem is that you need to stop digging through Jesus’s stuff when Jesus isn’t there.  I seem to remember you being pretty darn upset when AJ was taking your stuff without asking...  (See the beginning of season 3.)

For Your Sake, I Hope That He Never Finds Out That You Knew All Along:  Oh, Jesus will find out, Mariana.  Not just about Brandon knowing, but about basically everyone in the family lying to him.  And it’s not gonna feel good...

I Can’t Do This Anymore.  I Want Out of This, But If I Try to Leave, He’ll Kill Me:  Oh, Diamond :(  I hate that you’re so hurt.  And so stuck in a horrifying situation.

Don’t Worry.  It’s Saturday.  No One’s Here/Good ‘Cause I Look Like a Dork:  There is nothing more scary than returning to school changed.  :(

Think of Your Glasses and Your Helmet as a Fashion Statement.  You’re Basically a Hipster Without Even Trying: Nice thought, Mariana.  This still feels condescending, though.

Why Are You Wearing Your Glasses?/I Just Felt Like It: I do appreciate glasses-wearing solidarity.

You Guys Are Winning the Meeting Today?/You Mean the Meet?  Yeah, We’re Up By a Couple Points:  In a situation with high stress, Jesus’s speech is more affected.  (He says “meeting” instead of “meet” because he is thinking about the meeting with Drew.)  I appreciated the awkwardness of this encounter, but also that the kids were so excited to see Jesus. :)

Is This a Treehouse?/Yes.  I Want to Build It:  This whole meeting was infuriating.  Drew seemed ready to take the drawing from Mariana.  (She passed it to Jesus to hand to Drew instead.)  Drew looks to Mariana first before the presentation begins.  (A small thing, until you’ve been the disabled person in a scenario where the person you’re interacting with continually looks to the person with you instead of you.)  Drew makes a clear snap judgment in these first few seconds with Jesus, and it’s very disappointing.  (That aphasia impacts his intellect, specifically.)  The kids in the hall interacted with Jesus better than Drew did.  

I’m proud of Jesus for persevering through such a difficult speech situation.  It’s good to get used to how something like that feels and realizing that you can get through it.  

We’re Asking You to Resign:  Oh wow, that was a twist.  Poor Monte, though!  She was just trying to protect the school by requiring permission slips and it looks like it came back to bite her :(

Get Washed Up for Dinner.  Maybe Come and Help Us:  Hahaha!  As Tara just said, “Stef, your Teri’s showing.”

I’ve Been Saving the Money I Get for Fostering You.  I Was Gonna Give It to You Anyway.  Now I Can Use It For This.  If You Want:  I’m so glad Mike’s been thinking of a way that AJ can stay with Ty and also stay close.  Flip flopping Ana and Isabella and him and Ty into that extra one-bedroom is a stellar idea and AJ seemed so happy.  I have to add Tara’s comment, too, where she said that she’s really glad AJ didn’t thank Mike here.  You could see he was grateful, but the money was meant to be used on him anyway.  He does look so happy and settled, and relieved, and that’s great.

You’re Really Lucky Stef Got You Into GU/Yeah, I Know:  Wow, Callie.  Push Diamond to be a little more grateful...not.

I Spoke to Drew and He’s Not Going to Approve Jesus’s Senior Project:  Of course he’s not...also, Lena, why are you having this conversation with Mariana and not with...I don’t know...Jesus?

Also, is a phone call to Mama the usual way to unapprove a senior project?  Jesus did come in to present to Drew - the least Drew could do is extend the same courtesy by actually calling Jesus.

He Loved the Idea But He’s Not Convinced Jesus Will Be a Senior Next Year or Even If He’ll Be Back at Anchor Beach at All.  He Thinks We Might Have to Send Him to a Special School:  Okay, but really?  First of all, apparently, because ABCC is a private school, Drew can get away with the egregious ableism and overt discrimination of dismissing Jesus’s senior project idea on a one-time meeting (ahem, snap judgement.)  Also who exactly does Drew think he is to be telling Lena that Jesus might have to go to a ‘special school?’  That’s as bad as Dr. Danville saying that Jesus wouldn’t need a wheelchair based on Jesus lying in bed for two minutes.

Also, Lena?  Why didn’t you fight for your kid?  The idea that Drew could dismiss a project idea that he loved based on discriminatory ideas is just a bunch of malarkey and Lena should have been the one to point out that Drew is not in the position to judge what Jesus will or won’t be able to accomplish academically based on one meeting.

He’s Getting Better, Isn’t He?/He Is But With TBI There Can Be Setbacks.  He Can’t Read Right Now and He’s Missing A Lot of School:  Wow, Lena.  Seriously.  I get that you’ve got to be realistic about this but it just feels like one more betrayal of Jesus that you’re just lying down and not even speaking up on his behalf about this.  I get that you might not be able to make headway but it sounds like you didn’t even try at all.  Like you believe what Drew does, which is pretty devastating.

You Can’t Tell Him This Right Now.  It’s Gonna Crush Him Even More/I Know:  Great.  I’m so glad Mariana and Lena are continuing the theme of these episodes which seems to be: Leave Jesus Out of Absolutely Every Pertinent Conversation and Lie to Him All the Time.

You Know What You Gotta Do.  You Gotta Bring Me One of Those Girls:  Nooo, Diamond.  This is so terrible.  :(

Drew Approved Your Senior Project/No Way.  Really?/Kind Of...He Said It Needs to Be Both of Our Project Because It’s So Expensive:  Okay, so Mariana is telling Jesus it is both of their senior projects.  HIS drawing.  HIS vision.  HIS work.  But he will not even get a GRADE for it?  And Mariana will?  Oh yeah, this will end well. <--- sarcasm

What’s That?/A Magic Treehouse Book.  I Found It In the Attic/Will You Read It to Me?  Why can’t everything in this episode be just like this?  I absolutely adore these twin moments and the respect present here.

Everything Okay at GU?/Thanks for Getting Me in There.  I Know I’m Really Lucky:  Diamond makes sure to say this right in front of Callie so she knows that Diamond has taken Callie’s word (and all her gross forced gratitude) to heart.

I Could Hook You Up with a Music Producer:  Diamond, I realize you feel like you have to do this but you don’t.  Cristina, run away!  She doesn’t know a music producer!

I Could Have Been Any One of Those Girls, If You Hadn’t Rescued Me and Jude:  I relate so much to Callie feeling so indebted to Stef and Lena...

I Know I Said No More Secrets, But I’m Keeping One From My Brother. Don’t Know What to Do:  Here’s an idea.  Maybe stop lying to his face :(

We’re Sorry The Number You Are Trying to Reach Is No Longer in Service:  Oh no!  Gabe, where are you?

There Wasn’t a Complaint About the Sex Ed Class.  Drew Told.  Guess Who They’re Making Interim Principal?  Oh fantastic :/

Do You Like Her?/Yeah, I Like Her.  It’s Easy With Her.  I Love You, Callie, But Everything With You is So Damn Hard.  It Shouldn’t Be This Hard:  I feel like the end of this episode came so fast.  It still feels so abrupt (and convenient) that AJ breaks up with Callie.  Because based on this preview, with her going with Aaron to meet his family, I don’t think that would have been as workable if she and AJ were still together.

For more: Fosters Recaps

[fightinthefight-blog1]

mental vs. physical

What a crazy few days it has been. The last few days have been a constant fight between my mental and physical state, and it has worn me out beyond belief.

Friday morning I woke up with a long list of things to do. Mentally, I knew it was going to be difficult, but I was up to the task. Physically, I woke up in so much pain. I was exhausted and felt like I didn’t sleep, my neck was cramping, and I had a headache. I put myself together mentally and made it past the physical pain, and I accomplished many things that day.

A family friend of mine has an angel three-year-old grandson. I can’t get enough of him and he’s the sweetest little boy I’ve ever met. He has horrible asthma and ended up being admitted to the hospital, so I was going to spend a few hours with him. He was on the same pediatrics floor I was for my surgery, staying in the room right next door to the one I stayed in. I played with him for hours, as we took wagon rides around the floor and played with toy trains in the playroom. I had to push his IV pole around with him everywhere he ran to, and it nearly broke my heart. 

I was so disheartened to see someone I love have the potential of living with such an illness for the rest of your life. This little boy already has an extremely difficult life, and to know he could spend some of it as someone who is chronically ill made me want to take his pain for him. But it also reminded me how much I want to be those people working to make him feel better and send him back home. I looked at each medical professional I passed with such admiration. They are all such strong and smart people and one day I aspire to be one of them.

After many hours with Elijah, I went home in much worse physical shape than I had been in earlier in the day. I had a horrible migraine, neck pain, body aches, and such fatigue. I couldn’t stay awake with anything I did. I hung out with my best friend for a few hours, but was in such rough shape the whole time. I didn’t get any school work done, I was in bed by 10 p.m., and was in so much pain. I knew I had to be at work in the morning, which I was truly excited for, so I did my best to handle my anxiety about it.

I made it to work and had such a great morning. I thrive at work. I work at a medical assistant in a family practice, and I enjoy every minute of it. Talking to patients and watching the medicine happen makes me so happy. Even when I’m just writing up lab work or sending a fax, I enjoy it so much. We locked up the office for the day, and even though I planned on staying late to help with paperwork, I was beyond exhausted. 

I came home and planned on catching up on all the crappy sleep I’ve gotten lately. I set up my room like a spa with essential oils, my salt lamp, I smoked a little weed before (I have a medical card), and got in bed. I slept so well, but woke up in hell. When I woke up, I was in the most pain I’ve been in in months, I would barely move, breathe, see, or come to the conclusion if I was even remotely okay. I guess the fatigue and pain I was having earlier in the day and yesterday was a migraine coming on. I laid on the bathroom floor for hours, I was so sick. After an hour or so that I have no memory of, I started to feel better after the maxalt, marijuana, and hydrocodone kicked in. I put my neck brace on, relieving the headache to some degree. 

When I put on the neck collar and felt relief, my heart sunk. If I had truly had a migraine, putting on the neck collar would have done nothing good for me. But if I had a Chiari headache, wearing the collar would relief some of the pressure and restore CSF flow in my brain. This meant that my Chiari headaches were getting much worse. I went into a panic. The six months before my first surgery, I had headaches like this every single day. I was not functioning, I was completely disabled, Before I had these headaches every day, they only occurred a few times a month, which made us think surgery was not necessary. Once they became so intense, I knew I had no choice but to have the surgery or stay like this forever. Thinking that this headache today was the beginning of these headaches becoming a daily thing sent me into such a stressful state of mind. I do not want to have a second surgery, because it is so much more complicated and risky. But knowing there could be a day in my future where I might not have a choice made me want to die instead. A couple hours later the headache is nearly gone, but I am still very weak. 

These last few days have been total opposite for me. Usually, I am in a physically acceptable state to leave the house, but my mental state is so bad I don’t want to leave. These last few days, I’ve mentally been able to leave the house, but physically I’ve struggled. It’s interesting to see the days that one specific state is the reason I take steps backwards. 

There’s no way to predict how you’ll feel each day.

[eggjordie]

I suffer from ???

Recently I was diagnosed with Fibromyalgia and CFS. I find that such a surreal thing to say now, considering in those 8 words is almost 2-3 years of the hardest period of my life, and now its over. Sort of. Kind of. Actually, not really, but that's what people think when I tell them. In 2015 I watched the entire series of House M.D (that’s 8 seasons, 177 episodes in case you were wondering. Here, normally, I would make a joke about not having a life but it was, in fact, my life for a good few months). Generally a person gets sick, doctors don’t know what it is - sometimes they shrug it off, tell the patient and their family its ‘nothing’ - House and his team somehow notice this special case, they go through a series of trial and error while the patient is suffering or perhaps nearing death and then they usually solve the riddle. This is the process many medical shows follow. Sometimes they recognize that the patient may never get well again, despite diagnoses, and its kind of sad and stuff. But life resumes and then it’s time to play the next episode.

This gave me a false hope for my health story. Maybe I’m one of the few who have dealt with the same, but I’d like to share my experience of the grey area of the medical world and the suffering that so many with chronic, invisible illnesses experience. Because it sucks. It really, truly sucks. Spoiler alert! You don't get your own special diagnostics team and noo one tells you of the ‘limbo’ period where you’re floating through tests, specialists and appointments while people around you are trying to figure out what you have. I, albeit childishly, thought life would stop while this all went on. But it didn’t. I still had the worries of rent and bills while I was being tested for a brain tumor. There was still those thoughts every person in their 20′s go through - what will I do, where will I go, what will I achieve - during a short synacthen test and seeing an Endocrinologist. I could go on, but I’ll save you my entire medical history. The fact is, life continues, even when its crumbling around you.

I thought I was dying. It sounds melodramatic, believe me I’m well aware, but I truly did. Yet it was like no one believed me, as if I was in one of those shitty dreams where you’re trying to scream and cry but you cant and people are laughing at you, but it wasn’t a dream. This was where I entered what I call the Judgement Era of invisible illnesses, and it’s an era that has not yet ended. Because suddenly general practitioners were getting bored of my case, my doctor who had studied harder than I could ever imagine to be a medical professional, whom we are told when we are children are trusted to help us when we are unwell, couldn’t figure out what I had. So she started reverting to the usual; you’re overweight, you’re lazy, you’ve been working too hard, you just need to wait a few months its just a - a um, thing, but you’ll be fine, here’s a name to a yoga place it might help, have a nice day. She sent me for tests less and less until eventually it got to The Question. I capitalize that for a reason;

“How have you been feeling lately?”

Now, don’t get me wrong. Mental illnesses are a serious issue and I’m happy that there's more attention surrounding it, but in my case where I certainly did not have a mental illness as a cause for my health issues this Question will forever be the bane of my existence. Because depression is suddenly the safe diagnoses and it angers me, not just for my case, but for people who actually suffer with it. It belittles their suffering. It damages the progress mental illness awareness has made in the past few years. By diagnosing people without depression with depression you are undermining a very serious illness. But, despite my physical symptoms (correct me if I’m wrong, but I’m fairly certain depression doesn’t cause extreme, unexplained pain) this was what I apparently had. I saw quite a lot of doctors and they all reverted to the same thing. Depression.

Ive always been a very positive person, even through all of the shit Ive had to go through in the past few years. People who know me will tell you, I’m not sick because I’m depressed, I am depressed because I am sick. How have I been feeling lately? Is that a joke? How do you think I’d be feeling after all this time. After being told I have a brain tumor, to cancer, to addisons disease, to cushings syndrome, to heart disease and now being told I’m just overweight, lazy and depressed? Pretty damn shit, if I do say so myself. But I couldn't say that, because any inkling that I might be a little bit sad they would refer me to a counselor, clap their hands and say job well done. I knew. I wasn’t stupid.

After so long of dealing with this of course I had done my own research. Dr. Google might be awful for many reasons and I don't condone self diagnosing at all, but sometimes you just have to trust yourself. Because during this period of uncertainty in my life - I had just given up my career for my health, I didn’t know whether I was truly dying or not and I still had a life out of my bed that I needed to try to live - I was being questioned by family and friends. What did I have? Well, I’m not sure. What was the new prognosis that month? When would I get help? I was playing 20 questions with everyone, the same questions I was asking myself. All I could say was ‘I suffer from ???’.

It’s disheartening to say the least. This limbo period where you cant trust doctors or just anyone to believe what you’re pleading so you begin to doubt yourself. And that, in my personal experience, leaves you in a very dark place.

I got the usual advice from friends and family. Try yoga, go gluten free or vegan, have you tried this? Has your doctor tested you for that? What if it’s this? I know they mean well, and I truly did try everything they suggested. People wanted to ‘fix’ me, and that’s okay, but I wasn’t getting fixed. I wasn’t getting better, only worse, and when you cant help someone you care about you get frustrated. Friends started to question whether I really was sick. Well, you don’t look sick today! That’s good, they would say, to which I could only laugh awkwardly and change the subject. I know I didn’t look sick. I’m a damn good makeup artist and my invisible illness is damn good at being invisible, but of course I couldn’t say that.

I thought after finding a doctor who believed me and promised to help would change all of this. I can tell you in the weeks that have followed my diagnoses little has changed. I’m still being judged as an overweight lazy millennial; just this morning I got back from a disability job provider appointment crying my eyes out and making a right fool of myself because my provider had concluded in her mind that I was exactly that. I’m not ashamed to say that it still upsets me. Even after finally having proof of my disability I will probably have to deal with this for the rest of my life but that doesn’t make it any easier. It doesn’t make it any less shit.

My medical story isn’t over. My episode hasn’t ended now I have a diagnoses. It’s still going. Ive had to accept that things don’t change overnight and it’s likely that many of the judgements that I face daily will never change until these illnesses gain more awareness. But now I can say without a doubt that I suffer from Fibromyalgia and CFS, and not just ???

In the end that it makes it a little bit easier.

[thegloober]

Thumbnails Special Edition: National Disability Employment Awareness Month

by Chaz Ebert and Matt Fagerholm

October 24, 2018   |  

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Thumbnails is a roundup of brief excerpts to introduce you to articles from other websites that we found interesting and exciting. We provide links to the original sources for you to read in their entirety. This special edition of Thumbnails celebrates National Disability Employment Awareness Month, which runs through the entirety of October. Our contributor Scott Jordan Harris gave us the following article recommendations, and they provide a vital array of perspectives on the need for inclusivity in media.—Chaz Ebert

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1. 

“Growing Up, I Only Saw Half of Myself Represented On TV—That Needs to Change Now“: A personal essay from Bustle‘s Andrea Lausell about representations of Latinx people with disabilities. See also: Melissa Hung’s Huffington Post piece on “the most damaging way movies portray people with disabilities” and an article by prominent activist Vilissa Thompson on her Ramp Your Voice blog about portrayals of disability in the Black community. 

“As I’ve grown into my adult years, it has made me happy to see Latinx-centered media begin to share stories of other marginalized non-disabled groups in the Latinx community (LGBTQ+, Afro-Latinx, Indigenous-Latinx). Representation is slowly improving with how these identities are viewed with TV shows like ‘One Day at a Time’ having a teenager like Elena Alvarez come out as queer and work through the emotions while seeking acceptance from her Cuban family. ‘Jane the Virgin’ highlights characters of color tackling the topic of immigration, all while making a political statement about our government and its treatment of people seeking a better life. Although these strides are giving us a diverse representation of Latinx culture and are being received fairly well by the community for being marathon-worthy, if Disabled Latinx were to be included in the narrative, would the public receive it as well? I’ve noticed that non-Latinx communities are just starting to embrace disabled narratives on their TV screens. Often, disabled representation in Hollywood, like in the novel-turned-film ‘Me Before You’ starring Emilia Clarke and Sam Claflin, portrays the harmful stereotype of disability being a burden. However, shows like ABC’s sitcom ‘Speechless’ have been a game changers for showing a disabled lead character happy with their life. But that’s just starting to happen now. Growing up, I learned to be ashamed of who I am because there were so few positive disabled Latinx representations on TV. Hearing from my Latinx community that disabled Latinx don’t exist — or that there’s ‘no need’ for us to be shown — told me that my place as a Disabled Latina within Latinidad wasn’t welcomed.”

2. 

“Why are disabled actors ignored when it comes to roles like the Elephant Man?“: Asks The Guardian‘s Frances Ryan. See also: Ryan’s piece on the controversy regarding Netflix’s “Afflicted” series and Julie Rehmeyer’s Los Angeles Times essay on how Netflix is “televising prejudice against the chronically ill.”

“The BBC has been widely criticised over its decision to cast a non-disabled person in its remake of ‘The Elephant Man.’ The role of Joseph Merrick – who had severe physical deformities – will be played by the Stranger Things actor Charlie Heaton. Notably, actor Adam Pearson – who has neurofibromatosis type 1, a condition which was once thought to affect Merrick – has said he wasn’t even given the opportunity to audition. As Pearson told LBC, it’s part of a culture of exclusion for disabled actors. ‘It’s a systemic problem, not only in the BBC but industry-wide.’ From Dustin Hoffman in Rain Man to Eddie Redmayne in ‘The Theory of Everything,’ it’s routine for non-disabled actors to play disabled characters, often gaining critical acclaim in the process. At best, it takes work and exposure from talented disabled actors and further adds to an arts and culture that pushes disability representation – much like race, sex and class – to the sidelines. At worst, it sees non-disabled actors mimic the characteristics of a minority group without any involvement from the community it depicts.”

3.

“‘A Quiet Place’ proves there’s no excuse for using non-disabled actors to play disabled characters“: According to The Independent‘s James Moore. See also: Variety‘s Joe Otterson reports that Maysoon Zayid, who has cerebral palsy, will write and star in “an autobiographical comedy series in development at ABC,” while CNN‘s Wayne Drash analyzes the outrage over the portrayal of epilepsy on Netflix’s “Seizure Boy.”

“The movie is set in a post-apocalyptic world haunted by blind monsters that zero in on sound with the aid of supersensitive hearing. Silence is thus a matter of survival. Because her family uses American Sign Language (ASL) they have an advantage: they can talk to each other in a world where speaking can get you killed. The script could have fallen down at this point by having Simmonds perform a functional role without much else to do other than move the plot along for the other actors, including A-lister Emily Blunt, to shine. But it has more ambition than that. Simmonds’ Regan Abbott is a fully formed character; a stroppy teen, chafing against her parents’ overprotectiveness and haunted by what she sees as her role in her little brother’s death. It’s not just her deafness that is central to the plot: she is. She’s neither an afterthought, nor is she an inspiration, which is another trap films involving disability fall into. She’s a person. She’s also the best thing about a film that is full of good things. Director John Krasinski, who pushed to cast her, has further revealed that she changed one of the signed parts of the scripts in an important way that makes it better.  In fact she elevates the whole project. As Kamran Mallick, the chief executive of Disability Rights UK, says, she brings ‘an extra dimension to the role which a hearing actor would not have been able to do.’”

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4. 

“Toppling Structures of Inequality in the Documentary Field“: A great article published at IDA by Nicole Opper. 

“New Day Films, a distribution co-op created by and for independent documentary filmmakers in 1971, has recently been grappling with what it means to be truly representative of the broad spectrum of filmmakers that exists, including filmmakers of color, working-class filmmakers, trans and gender non-binary filmmakers and those with disabilities—groups that have historically been underrepresented or poorly portrayed in the industry. At our Annual Meeting in upstate New York this past June, a panel was convened to discuss the findings of an Equity and Representation task force, and to open up the conversation to all member-owners of the co-op. ‘Very often in the documentary space, I’m the only person of color,’ remarked Michael Premo. Premo is the director of ‘Water Warriors,’ the story of a community’s successful fight to protect their water from the oil and natural gas industry. ‘This is also sort of dually equated with poverty, which is equally as racist as being the token black guy.’ Cheryl Green, the director of ‘Who Am I To Stop It’—a documentary about individuals with traumatic brain injuries—shared her perspective as a filmmaker with acquired disabilities herself: ‘There is no one disability community. What is a film about disability? What is a person with a disability? We’re not a monolith. There’s not one way to talk about it; there’s not one way to present it. The main way disability is represented is non-disabled people parachuting in and filming a medical story. Usually it’s one that starts off as ‘That’s gross or scary or painful! Phew! They got better.’” 

5. 

“CinemAbility: The Art of Inclusion“: Scott Jordan Harris recommends Jenni Gold’s documentary in his RogerEbert.com review.

“‘CinemAbility’ is the most entertaining and comprehensive history of disability in American film and television ever made. In that sense it is the onscreen equivalent of Matthew F. Norden’s classic book Cinema Of Isolation: A History Of Physical Disability In The Movies, and Norden is prominent in the film’s opening scenes, explaining the early and generally disheartening history of Hollywood’s ideas about disability. Due prominence is given to Lon Chaney, an able-bodied actor notorious in the disabled community for making a career out of grotesque and exploitative parodies of disability. He often did so in partnership with director Tod Browning, who in 1932 made ‘Freaks’ with a cast of disabled actors. Norden uses ‘Freaks’ to make an important point about audience attitudes to disability then that is still relevant now: ‘Audiences couldn’t handle [‘Freaks’]. People supposedly went screaming down the aisles because what they were seeing on the screen were not able-bodied actors wearing tricky makeup … They were seeing authentic disabled people.’ But ‘CinemaAbility’ never feels like a lecture. It is structured like a conversation, with contributions from an array of industry heavyweights, including Marlee Matlin, Ben Affleck, Geena Davis, William H. Macy, Ben Lewin, Peter Bogdanovich and R.J. Mitte.”

Image of the Day

TV Guide‘s Alyssa Andrews explains “how TV is still failing people with disabilities,” in graphic novel form. 

Video of the Day

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The official trailer for Jenni Gold’s documentary, “CinemAbility: The Art of Inclusion,” reviewed above by Scott Jordan Harris.

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