Guest Post: From quack to quacked, Quark to quarks: A journey to invisibility.

(Note from Ania: This post by Sophie was written with the assistance of a speech to text tool. There may be some typos, which I haven’t been able to correct yet.  I will come back and edit them as soon as I have the spoons to devote to it.)

We live in a world of experts. Scientists. Astronauts. Doctors. Computer programmers. Politicians. Teachers. Husbands. Wives. Parents. Men. Woman. All the people. Everyone you see around you is an expert in their field, even if we all haven’t gone through higher education to obtain a degree.

But you don’t need a degree to be considered an expert in your field. In a lot of cases, the people who will know most about a thing are the people living with and dealing with the thing. And for the most part, people accept these masters of the universe in their own chosen specialty.

Parents are masters in parenting.

Women are masters in being women.

Men are masters t understanding men.

Even children are masters at understanding children.

Social justice warriors are masters at navigating the system and assisting people in distress because of the system.

Marginalized people are masters at knowing what it means to be oppressed because of who you are, or what you believe in.

I am sure that you, reading this, are a master in your chosen domain.

But I cannot speak to what it’s like being a part of that domain. And it’s not why I’m here today, writing this. But I did want to make sure before I began that you understood that I SEE you. You are not invisible to me. And I am quite certain that you will have experienced some or many of these things that I want to speak about. I know that your pain is real. But I must focus my thoughts and speak of the things that I personally know, which unfortunately isn’t every single person on earth, much as I wish I could sometimes.

So let me try this again, from the beginning.

Each and every one of us is a master of our own domain. We don’t all have university degrees to tuck in under our belts, but we do all have our passions, and qualifications. Today’s words will focus on one particular subset of the human culture: Being disabled, and the invisibility that too often comes with it. Because while it isn’t the knowledge I would have wanted for myself, it’s what I have become educated on, by means of the circumstances I’ve been thrown in.

It is in that light, in that guise, that I introduce myself to you.

Sophie, Ph.D.
Partially human, Disabled.

Continue reading “Guest Post: From quack to quacked, Quark to quarks: A journey to invisibility.”

Guest Post: From quack to quacked, Quark to quarks: A journey to invisibility.
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The Emotional Labour of Asking for Help

I think one of the hardest things for me to learn after I became disabled, was when to slow down, and when to ask for help. We talk about the energy cost that comes with living with chronic illness, but accepting it is still a process. Coming to terms with the fact that you can’t do certain things is hard. You’re determined not to let being sick change you, but you have no choice. You have to. Because you are different now. There are things you cannot do, and moving on and becoming yourself means coming to terms with that.

What many people don’t understand is that it’s not a onetime thing.

It happens again every time we have to ask for help.

Society tells us, as well as everyone in our lives, that we are a burden and that that is all we can be. No matter how much we learn that it is not the case, it is still hard not to internalize that message. The message is passed along in the media around us – with disability being presented as the worst possible thing that can happen to anyone, and in the reactions of people around us.

When Alyssa and I were together for example, it was not uncommon for members of her family to question her as to what good our relationship was with me being so broken. When she had called her mother to announce our engagement, what should have been happy news was instead met with a sense of mounting horror and dramatic exclamations of “no, no, no”. Later when discussing it with her father, the concerns about tying your fortunes to a disabled person came up again. When I was with my ex before Alyssa, so many people would tell me over and over again that I was lucky to have found someone who was willing to stay with me. I think the worst however, was when a friend who also happened to be Alyssa’s partner tried to talk me out of getting a dog to train as a service dog for myself by bringing up how much Alyssa already had to do around the house.

Although it was never flat out said, the implication was obvious. I was a burden.

Continue reading “The Emotional Labour of Asking for Help”

The Emotional Labour of Asking for Help

Descolonicemos lo que nos Enseñaron

The following quotes are from a post I’ve seen floating around el facebook, shared among several pages dedicated to my hometown and Puerto Rico in general.

Cuando Puerto Rico estaba bien, los comunistas, los socialistas, los independentistas y los soberanistas gritaban “Yankee go home, we do not need you”. Ahora no se escuchan ni se ven.

Puerto Rico nunca ha estado bien, por eso es que gritamos “Yankee go home”. Porque ellos tienen mucha de la culpa por la cual Puerto Rico esta en problemas económicos.

¿Dónde está el patriota Óscar López y los macheteros con machete en mano cortando árboles y trabajando por la patria? ¿Dónde están los encapuchados de la UPR que no se ven limpiando los escombros en la universidad y las carreteras de la patria? ¿Dónde están los ambientalistos que no se ven limpiando las playas, cortando árboles y limpiando carreteras? ¿Dónde está ese grito de guerra “Yankee go home” que los identifican? 

Apuesto que están ahí, limpiando y colaborando para levantar a Puerto Rico. Y todavia le gritamos al colonizador. Ese hecho no contradice el otro.  

And what’s this:
El presidente interino de la Universidad de Puerto Rico (UPR), Darrel F. Hillman Barrera, exhortó hoy, jueves, a la comunidad universitaria a unirse en trabajo voluntario para rehabilitar el Jardín Botánico, en Río Piedras.

Mira pa’lla. The President of the University of Puerto Rico is asking for student (and other) volunteers to help clean up their botanical garden in Rio Piedras. Metiste la pata bien meti’a, mijo.

But now everyone in Puerto Rico speaks English. Carmen Yulin en representación de la izquierda boricua por cámara y con lágrima en los ojos expresó: “We are American Citizens, we need help.”

Well, I mean we are citizens. Yulín is rightfully calling out the government. So what’s your point? Don’t think I don’t catch the casual sexism of pointing out that Yulín Cruz cried.

Yeah, we know, that’s why we’re here. And we will always be.

We’re American (second class) citizens because one colonizer ceded us to another. I certainly hope we aren’t always a colony. ¿Estas diciendo que porque criticamos a los gringos no podemos esperar que ellos manden la ayuda que es necesaria?

I’ve encountered this type of thinking before. The type that says that if you accept help from the government you can’t complain. So, the poor can’t demand justice because we’re on food stamps? That’s victim blaming bullshit. We didn’t ask to be colonized, but if we are going to be then the United States HAS the ethical and moral responsibility to send help.

“Yankee go home”, fuck yes. But if Yankee is going to keep us as a colony then they need to fucking do their jobs. The United States need to be held accountable. And they will be by the communists, socialists, independents, the sovereignists. Because while we’re busy trying to get our island up and moving; while we’re trying to become free; you’re too busy besandole el culo al gringo. They don’t need to fight us because they can just get us to fight amongst ourselves.

Decolonize your mind. ¡Despierta Boricua!

Descolonicemos lo que nos Enseñaron

Rise of the Fool

They called him a joke.

They said the people who supported him were fringe elements, just a bunch of extremists without popular support. Rabble-rousers making up the audience of beer halls; a bunch of drunk fools getting into trouble. Just a bunch of children.

His book was a bestseller.

His explicit hate and racism was said to be just for show. Not genuine, but just a way to gain the masses trust and attention. Interesting how no one considered what the fact that such hate would gain the trust of the masses actually meant.

No one thought he would make it very far in politics. He was a joke. There was no way he would actually win.

When he did, the whole world looked at the electors in shock, confusion, and a sense of horror. No one thought he would win.

Even after he won, no one thought he was really a threat. No one believed that he would actually manage to achieve his horrifying promises. It was all just rhetoric they said. He was too incompetent. He was too weak.

When armed resistances started up, protesting and threatening violence against any who spoke against him, it was excused as the childish antics of angry young men. Not a representation of what they really thought, but just a manifestation of the anger they felt at being disenfranchised by bad economic times.

The rise in vandalism and violence was excused as childish antics and not an indication of how they really felt.

The world mocked him. Comedians at the time drew attention creating caricatures of him as a bumbling angry clown with a funny appearance.

Who am I talking about? Continue reading “Rise of the Fool”

Rise of the Fool

Intersections within Intersections Part 2 of 2

Part One Here … 

This is a fairly long post, so I split it into two parts. I ask however, that you not respond to either of them unless you have read both. There are nuances to both parts that I think are pretty essential to one another. Because this is dealing with some heavy and possibly delicate areas of theory, I’m pretty terrified of some of it being lost. 

I’ve run into similar arguments before at different times, being told that black people cannot be ableist. At the time I believed, and still do, that the statement is completely false. Not only is claiming that black people are not influenced in the same way by social prejudice as everyone else seems to me like a form of benevolent racism which is still harmful, but it is especially damaging to disabled black people. By that logic, a disabled black person who has to struggle with ableism in her community and in her family would be told that her experiences are not real.

It can be tempting to excuse a black person’s ableism towards a white person given the history of racism, but even with the racial power dynamics at play, ableism hurts black people too. A person who feels comfortable insulting someone on the basis of disability because they are white, is unlikely to treat disabled people of their own race any better. The ableism will inform their actions towards other disabled people, and even when it doesn’t, the ableism they display at disabled white people, will cause splash damaged to disabled black people.

However, in having the discussion, it is important for me to be aware of my own privilege.

I commented to a friend recently, that in these discussions the framing is always a white woman talking to a black woman, but why can’t it ever be framed as a disabled woman talking to an abled woman. This was, after all, a discussion about ableism and I was speaking as someone affected by it.

The answer of course is because it is always both.

Continue reading “Intersections within Intersections Part 2 of 2”

Intersections within Intersections Part 2 of 2

Intersections Within Intersections Part 1 of 2

This is a fairly long post, so I split it into two parts. I ask however, that you not respond to either of them unless you have read both. There are nuances to both parts that I think are pretty essential to one another. Because this is dealing with some heavy and possibly delicate areas of theory, I’m pretty terrified of some of it being lost. 

Earlier, I participated in a bait thread on a friend’s wall that made the statement: All men who do not stop street harassment, are complicit in it. Many of us came onto the thread to agree with this statement, until someone jumped in to accuse all of us of being racist. The argument was that it is not always safe for certain men to speak up in certain circumstances. I agreed that this was true, but argues that that didn’t change their complicity. The responder then accused me of having said that all men are culpable always.

I will concede that perhaps a clarification could have been added specifying that this was referring specifically to gendered street harassment, and not other forms of hate speech that may get thrown about on the streets. While all forms of harassment on the street are bad and should be talked about, there is something unique about gendered harassment in that many people are not convinced it is a bad thing. Many respond to concerns about it saying that “It’s meant as a compliment. I wish people would yell nice things at me walking down the street.” (For the purposes of this post, when I refer to street harassment, I am specifically taking about this gendered type and not all forms of hate speech spoken on the street. )

Continue reading “Intersections Within Intersections Part 1 of 2”

Intersections Within Intersections Part 1 of 2

PSA: Don’t Touch Accessibility Devices

Accessibility Devices are, for all intents and purposes, a part of our bodies and should be treated as such.

DO NOT touch an accessibility device WITHOUT CONSENT. In case this is not clear, I mean the consent of the disabled person.

Do not touch a wheelchair without the consent of the person in it.

Do not touch a walker or a cane without the consent of the person using it.

Do not move a walker or cane out of the way, even if the person isn’t using it right now.

Do not push a wheelchair without consent, even if you are just trying to help. Even if you just want to make it easier for them to get up a hill.

Do not put a cane where the person who needs it can’t reach it. It is not funny.

Do not take a person’s prosthetic. It is not funny.

Do not push a person’s wheelchair out of your way, or to make them go faster. If you wouldn’t shove someone out of the way, then consider pushing someone in a chair as the equivalent.

Do not take a person’s hearing aid. It is not funny.

Do not try to make a person’s hearing aid produce feedback.

Do not push someone wearing a hearing aid into a pool, or spray them with water.

Do not touch a service dog. Doesn’t matter how cute it is. Doesn’t matter how small it is. If the dog is wearing his vest or currently working, DO NOT TOUCH THE DOG. (Or Any Other Service Animal)

Do not talk or stare at a service dog – dogs are social and if they are paying attention to you they are not paying attention to their job. They’re trained, but they’re still animals who CAN get distracted.

 Do not put a walker or a cane somewhere else, even if it is not currently being used.

DO NOT try to help by lifting their walker or the person themselves unless asked. If you offer, respect their no.

Continue reading “PSA: Don’t Touch Accessibility Devices”

PSA: Don’t Touch Accessibility Devices

Disability Misery

I’m multiply disabled, by whichever model you use. I am on disability assistance and I live in Canada where I even have access to healthcare. Given all this, you might think that the fact that I still have disability related depression, that I am proof that disability really is misery. That the medical model is right.

I want to make this really easy to understand.

I’m not miserable because I’m in pain.

Continue reading “Disability Misery”

Disability Misery

How did it Feel Getting Diagnosed: ADHD

I was that strange kid who knew at a very young age that I wanted to go to university. I don’t know when exactly it started, but I was working towards that goal from an early age. I used to read a bunch of different books on how to get the best grades to get into university. Many of them recommended doing extra credit projects, which would show the teacher my enthusiasm for learning.

I started many different projects along these lines. I remember one in particular, about the St. Lawrence Seaway, where I spend hours reading up on the history of the canal. No matter how much research I did or how many hours I spent motivating myself, none of these projects ever got finished. Homework too often waited till the night before it was due to get done. On the few occasions that I did manage to start an essay early, I would get significantly worse grades than those I wrote at the last minute.

Continue reading “How did it Feel Getting Diagnosed: ADHD”

How did it Feel Getting Diagnosed: ADHD

Accessibility Hunger Games

There is this episode of House, where the hospital hires a doctor who uses a wheelchair. As a result, House loses his parking space and is forced to relocate slightly further away. During this episode, House, the doctor in question, and Cuddy, engage in an argument over who deserves the closer spot. The audience is predisposed to assume that House is a selfish jerk, and so an important point about disability is missed by the majority of watchers – namely the way in which disabled people and different disabilities are pitted against one another in order to keep us from uniting in a way that might pose a threat to abled power structures.

The debate that takes place raises some of the many ways that disability concerns are generalized in a way that hurts some people while it helps others, and imposing an ineffectual rating system regarding what qualifies as disability and what doesn’t.

Continue reading “Accessibility Hunger Games”

Accessibility Hunger Games