(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.
Partially human, Disabled.
And I know my body better than any doctor ever could.
Okay, but what’s up with that wacky title?
To be honest, I love puns, and word plays. But I also like how sometimes, a title is enough to put a whole structure into a piece of writing. And while some people can often write things on the fly (I do sometimes too), a lot of the time, I’ll think of a catchy phrase, and get inspiration for writing from that. So let’s begin.
From quack to quacked to Quark to quarks. The 4 areas I wanted to write about.
While commonly known as the sound of a duck, a Quack is often a term used to relate to a “fake” doctor. Society more often considers these fakes to be doctors of alternative medicine. (I don’t agree that alternative medicine is useless, FYI) Or those who mess up in general. Or those who pretend to have a degree when all they have is a guide-book on how to lobotomize people.
Yeah. There are a lot of Quacks out there. And it is a sad thing that Disabled people will often start their career in disability Ph.D. with a quack doctor, or with a medical team that just doesn’t care. Those of us who live through that ordeal become masters in our own symptoms, specialists of our own diseases. Ask any physically disabled person, and they will likely confirm the fact that they know more about their illness than doctors do. And if they’re lucky, they will have a doctor who accepts this, and works with us, rather than works against us.
But the world doesn’t want to accept that a disabled person might have the knowledge equivalence of a Ph.D. in their own bodies. Be it doctor, family member, coworker, friend, or stranger… The fact is that we don’t qualify as experts because we didn’t pay thousands in student loans to learn about our illness. Because living through it, and spending countless hours researching it online isn’t enough for people to wake us seriously.
And that is where the Quack becomes relevant to us. We are not believed.
There is something wrong with my body.
This is a new symptom.
I’m worried about the interaction between my medication.
I’m experiencing something that’s not related to my diagnostic.
I’m in pain, and it won’t stop.
These are just some of the words we’ve often used. And the response will be pretty much the same from doctors and the rest of society.
You’re making it up.
You’re not an expert, so stop overanalyzing.
You don’t know what you’re talking about.
Stop making excuses and seeking pity. We know you just want attention.
Your concerns are ridiculous.
You don’t know what you’re saying.
These are just some of the words we’ve often had used against us. From Doctors, and the rest of society.
Because we don’t have a paper from a university saying that we’re qualified to speak on our own behalf. And so we get lumped into that same crawl-space that society reserves for quacks, or fake doctors.
No-one believes us. No-one believes IN us. And so into the Quack factory we go, to be stamped with a giant F on our forehead, proof that we Failed medical school, proof that we are Fakers. Because really, you aren’t sick. The doctors know best, and they say nothing is wrong. The doctors must be right.
When the world is opposed to you, and everything you are, it drains your strength, your energy, your capacity to cope, your ability to fight. And when the whole world tells you that you are crazy or imagining things, you eventually start to wonder. Are they right? Am I making this up for attention?
And when your strength fades, you use what small reserves you have to make it through the day, and forget about seeking more diagnostics, about fighting for your own health. Because you believe yourself to be a Quack. The giant F for faker on your forehead reminds you every time you look into a mirror.
And then things get worse. Time goes by. The problems you once knew you had, and now have convinced yourself were just an overactive imagination, rage on unchecked in your body, until you reach that point of no return. That moment of clarity.
That clearness of vision could belong to you, a friend, a stranger, a co-worker, and sometimes, it might even be your doctor.
This time of truth often is a direct result of things having progressed too far. Everyone around will be shocked at how extreme your symptoms are, and how you didn’t tell anyone. They will say you have a rare symptom, or a very hard to diagnose thing. And convince you that there was no way of knowing about it beforehand.
But you will also have that knowledge that you KNEW something was wrong. That you talked about it. That you tried to shine light on it. And that you were labled a Faker. You are Quacked. Victim of doctors who wouldn’t listen, stuck with an extreme condition that will need daily management to keep under control. Something that could have been prevented by catching the illness at the start when it first became a concern, preventing it from growing until it had the strength to cripple your body permanently.
Congratulations, you’ve just been Quacked.
You’d think that once you have your precious diagnostic, that you have a real doctor saying that you have the thing, that people would believe you. But they have spent so much time convincing you that there was nothing wrong that they’ve convinced themselves of it too. And despite the diagnostic, it doesn’t remove all their prejudices. And even if they could see past it, they can’t un-see the giant permanent F on your forehead.
You are Quark.
For those of you not familiar with Start Trek, (Deep Space Nine), Quark is a Ferengi. He is short, has big ears, belongs to an alien race, and is known as either a businessman or a con-man, depending on who you ask. Truth be told, everyone knows that Ferengi are all about personal gain, and will put their own wealth above the well-being of friends, family, associates.
But Quark is not shunned. Everyone looks down on him for his shady business deals, and his efforts to scam people. And he is useful. So very very useful when you need something on the black market. When you seek to acquire illegal goods. Quark’s your man. Just don’t bring your money with you, because he’ll steal it before you even walk into the room. Ferengi can smell money from a mile away.
You are Quark. You are the con man. The liar, and cheater. The Faker.
You may have that precious diagnostic, and the truth be known, but that giant F still looms on your face, and people just can’t un-see that.
“I don’t know why you’re complaining all of a sudden. you went years living with this, and staying quiet about it, why do you suddenly squawk it out every chance you get? Stop airing your dirty laundry in front of everyone who passes your way.”
And inside, you cry. You scream in your mind because you lived through it for years, keeping it quiet, having been convinced by others that you were crazy and imagining things. And you cry because you finally have the answers you sought, and it still isn’t enough. No-one wants to know. No-one wants to hear. If you were quiet so long, maybe you can just keep on being quiet. And secretly, you also cry tears of shame, because your very existence has become “dirty laundry”. And you don’t know how to make people understand that being sick and disabled isn’t something you should be ashamed of, because it wasn’t in your control. And you tried to make yourself heard. But no-one believed in you then, and they still don’t.
And word spreads around. You are Quark. Anything you say must be taken with a grain of salt. You lived with the symptoms for years without complaining, so any complaints that you make now that you have the thing must be exaggerated. Because no-one believes that things are worse now. That the pain is harder because it’s been part of you for so long.
But no. Once a Faker, always a faker. But like Quark, you have your uses.
It is something that I grow increasingly aware of as the years go by. My own insecurities. My own trauma. My own responses to the world around me.
Too often have I been told that I am faking. That I am exaggerating. That I am seeking attention. That I am a burden. That the world would be better off without me. That I should be ashamed of my disabled life (aka dirty laundry) and stay quiet about it. That no-one will want me around because I’m too much of a hassle. And if i want anyone to stick around, I’d better make sure I’m extra nice and helpful otherwise everyone will leave.
And well, I have abandonment issues. As far as manipulation tactics goes, that one is actually rather effective on me, and it leaves me crying at night.
In every interaction I have, I seek ways to be helpful to people. To mitigate the bad that comes from being around me. To keep people in my life. I will waste precious spoons to take hours of my day doing a thing for someone, regardless of consequences to self. Because if I’m not going out of my way for a person and paying a price the next day, then I don’t deserve to be around that person. Because they will be paying the price the next day of having had to deal with me being a burden.
But so long as I help them in the process, it’s all good, right?
I see it everywhere. And I don’t want to complain. But it is exhausting to always be trying to help other people at a detriment to myself, only to have people regard my help as “their just reward for putting up with me.” To have them completely disregard the efforts I make. To forget to thank me, or show appreciation. Because why should they? I appreciate their putting up with my “dirty laundry” so I have to “pay” for their presence in my life with one favour or another.
Yes. I think that’s the best explanation for my feelings.
If an abled person would go out of their way for someone else, they would be thanked profusely, their efforts appreciated and acknowledged.
But when a disabled person goes out of their way to help someone, they shouldn’t expect thanks or appreciation. Because their efforts are simply payments to others, bribes, more or less, to keep people in your life.
Because you are Quark. A faker. A con man. An annoying burden that can be used or bought. But never someone that you’d want around for the sake of having them in your life. Not without getting paid for it, that’s for sure.
And now we come to the end of the journey.
We noticed a thing in our body.
We were told we weren’t real doctors.
We have lived with a thing.
We weren’t believed.
We complained of the thing.
We were ignored.
We were told not to worry about the thing.
We pushed it to the back of our minds.
The world believed we were crazy because of the thing.
We believed it too, eventually.
The thing caused serious damage to us.
People finally payed attention.
The thing was diagnosed.
We were left with an F on our face.
We suffered for years from an out of control thing.
We still aren’t believed.
We complained about the diagnosed thing.
We were told to stop making noise.
We were told we were useless, and a burden.
We slave away to “bribe” people to stay.
We weren’t acknowledged for the efforts we put out.
We are told we shouldn’t expect thanks for the help, because we’re too much of burdens to have around otherwise.
We had a day where we needed help and asked for it.
We became quarks.
Sub-atomic particles that cannot be seen.
Invisible, for all intents and purposes.
Easy to ignore. Easier to forget.
Because this is what life as a disabled person means for us. We will fight for our health and be ignored, invisible.
We will stand up for ourselves, and be disbelieved.
We will be labled as Fakers, and made the laughing-stock of society.
We will go out of our way to help others, and to not have that effort acknowledged.
And at the end of the day, when you are in a bad place, you will turn to your friends and family, asking for help, for compassion, for understanding.
They will look at you, and see that today, you have nothing to offer for the burden of being around you.
Today, you cannot be productive, and do a thing for them at great cost to you.
Today, you need help and support. And you can’t “pay” for it.
Today, you are either a con-man trying to take advantage of someone, or a faker, exaggerating your pain in an effort to garner more pity.
And unless they are of use to you, no-one likes being around a con-man.
These people that you care for, that you have dedicated hours of your time to help, will look at you, and see only that you have nothing of value to offer them today.
Because when you need help, you are just a burden. Not worth the time. Certainly not worth the effort.
People will look at you, and decide to see through you. And they will abandon you, knowing that the next time you have energy, you will be banging on their door, offering them free help again. But until such a time, with nothing of value to contribute on that day, you will be invisible to them.
Simply a subatomic quark. Invisible. Easy to ignore.
And there are no words to describe that feeling disabled people have, when they become invisible.
But I’m sure we all agree on one thing.
It really fucking hurts.