I’m Not A Good Girl
Note: I no longer go by any pronouns.
Transcript
Hi I'm Sam.
I would like to begin by acknowledging the Wurundjeri people of the Kulin nations, the traditional custodians of the land on which we sit or stand, and the land on which I live and be. We pay our respects to their elders past, present and emerging. I would like to acknowledge that this land was stolen, and that sovereignty was never ceded.
I would also like to acknowledge the Gadigal people of the Eora nation, the traditional custodians of the land on which my exhibition My Pee is Political, which this performance is a part of, was held. We pay our respects to their elders past, present and emerging. I would like to acknowledge that this land was stolen, and that sovereignty was never ceded.
Do you like my PJ pants?
They’re dinosaurs.
Ra.
Space dinosaurs.
This is about how lots of you see me, and the feelings I have, so hopefully you will see me differently after this. And also to explain to all the other people what’s happening to me.
I will be talking about abuse in many of its forms, and suicidal thoughts.
I feel I need to say this to the world, so hopefully, we can have a conversation about it. What might be obvious to me, may not be obvious to you.
People have said how it’s wrong that I should have to explain it, but they didn’t know.
I’m very happy for you to come up to me after and share any of your questions or emotions. It’s a way of healing.
And it’s totally ok to laugh, laughter is an emotion and it doesn’t mean you are not taking me seriously. I laugh at serious things.
I go through life, where the first thing I ask is “is it wheelchair accessible?” Then, often, it is hard to access. Narrow doorways, boxes, chairs, you name it, even people, just standing there on their phones.
There is often a way around it, but it's so hard all the time and often I'm left out in the cold.
At places to eat I often have to sit outside. I often have to find a different way because there is a car parked on the footpath. It all eats away at your life.
And some of you call me "good girl”.
I was at the movies and I had this new chair which tilts back really far and I was loving it, but I didn't realise that my head was right in the walkway of the row behind, so when the credits started my friend alerted me and I turned my head to see the whole row standing there waiting.
WOO HOO!
I was in their way for once.
I don't know why they were going, it was a Marvel movie after all.
I have had colleagues go into an inaccessible restaurant on me. In a way this shows good and bad things. It means people see me before my disability, before having to think about my chair fitting into a space. It’s also bloody horrible, because once again it excludes me from spontaneously hanging out.
There have been inaccessible parties - that is, some parties I can't go to.
And parties I’m not even invited to.
It is all socially isolating.
It’s emotionally draining to go through it day after day.
And I know many people cannot hack it with me.
But the built environment simply reflects far greater issues with the social environment.
My pronouns are she, her.
But I’m so sick to death of hearing it.
Like
‘How old is she?’
‘Does she go to school?’
‘Does she go out everyday?
‘Is he allowed lollies?
‘Where is her carer?’
‘I take it she is a virgin?’
‘What is his name?’
‘Are you her Mum?.’
‘Where is his carer?.
Why the hell don’t they talk to me.
Once I saw someone from the management of the place I used to live in, correct someone with a disability, saying that she shouldn’t refer to people as “she” or “he” in front of them, it’s very rude.
I then noted that this person that the manager had corrected was referred to as “she” in front of her all the time, and then realised that I was also referred to as “she” in front of me. Even by the staff that was under this manager’s responsibility.
So what the fuck, why shouldn’t she say “she” then.
I have taken to saying, ‘no she please’.
And it more or less gets the outcome I want.
The other person: “I’m sorry I don’t understand ?”.
Me: Don’t refer to me in the third person please, it makes me feel as though I’m not there.
The other person: O, I’m sorry.
They try to recover with, “it’s amazing what they can do with technology these days”.
Um, it’s pretty 90s.
My speech device even has green writing like in the matrix.
Another thing they say is: “Does it say swear words?” I once had a Neurologist say that.
Think about it. It would be a violation of freedom of speech.
Duck it.
I was trying this new bit of Sushi. It was purple rice.
I was on the train when I took a bite of it. Next thing I know this woman was pulling something from my mouth. It was a piece of plastic that was wrapped around the sushi that I would have felt and pulled it out myself.
She said, ‘let me take the wrapper off’. I said, ‘No Thank You,’ but she still tried to snatch my Sushi from my hand.
By all means help me, but make sure you have my permission first.
It was infuriating and I felt so yuck.
One time after I had done a talk about housing, someone called me cute.
I’m the farthest thing from cute.
One time crossing a busy street in the city, I had a speech therapist with me because we had agreed to meet.
She was going, ‘stop here,’ ‘now go, go’. I know how to cross a road.
I tried to tell her subtly to stop it by saying, I come here all the time.
She said, ‘stop’, again on the way back.
I went backward and forward threatening to go into traffic.
Hearing her mixed emotions, ‘NO’, ‘no’, ‘no’ felt so sweet.
I had the power. Not her.
I had power over myself and was demonstrating this beautifully. But, so often I don’t have this power.
I can now use a toilet on my own. I just put my leg over the bowl, flick the valve open and "wee".
When I first got my catheter put in for good I was so excited. I wanted to show the whole world my golden shower.
I’ve got all the perks of being a penis haver. Pisssss shake shake and tuck it back into my pants.
Nevertheless, I cannot go into most disabled toilets. I still need the space. Aside from all the able-bodied people taking dumps, having sex, dealing or being sick in them when there are able bodied toilets right there.
I guess it's because they think it's more private and I know some able-bodied people use them and have every right to, for safety concerns or trauma or because of invisible disabilities.
But so many times I have seen people go to use the disabled toilets, see that it’s engaged, and instead immediately turn to go to the other toilets. Meanwhile, I'm outside toying with the idea of using the gutter, which I would really rather not do. I don't mind using it, but at these times people ask me "are you ok" which makes me feel really odd. They ask "do you need a hand?". They can't know what I am about to do, but that's nice - people seeing if I need help. I have found that people are pretty awesome. Offering to get me things off hard to reach shelves in the supermarket, retrieving my hat from the ground, making sure the train driver remembers to let me off, covering me from the rain.
But people don't know these things, like: please don't leave a chair there, parents could you please put the change table back up when you finish, your rubbish bins are in my way, having to put the seats up myself on a moving bus and so on, and so on, and so on, and so on. And please don't call me good girl.
If the disabled toilet is free, I cannot get the door open to most of them, or if I go inside I couldn't get out again, because often the door has the big heavy clozer on, or yet I can not lock many of the doors, leaving me vulnerable. And most of the time I cannot reach the flush button.
So, gutter for me after all.
I have altered my body for you peeps. The least you can do is meet me halfway.
You may think "Why doesn't your carer open it for you?"
They are a support worker not a carer. I do not need to be taken care of. And if I can do it myself I will do it myself. It's just old architecture and people getting in the way.
It’s just ableism getting in the way.
I was visiting my Dad for the first time in the nursing home. I had to go to the toilet and the woman showing me the way said “I'll wait outside”. When I was done she said “sorry I thought you were his wife” and I laughed and tried to say, “He often calls me Isolde which is my Mother’s name”, but she said, “I've got to go, it's lunch time, good girl.” and tried to push me in my wheelchair.
She didn’t get very far, but still she tried to push me.
She tried to push me.
At times like this, I just shut down. If I was to get angry, I would be labeled the angry one, and also there are only so many words I can type in a day.
I'm very aware I take a while to say something, and I often don't say anything for this reason, but then I need to express myself too.
I unavoidably take more time than people without a disability, and then it's all the lack of access that takes so much more time. This makes my time very precious, so I know the value of time.
And you call me ‘good boy’.
People have said “but you are so fast in your wheelchair.” Yes, but it’s not that fast, many people can outpace me, and there are so many obstacles in my way it actually still takes me longer to get anywhere.
And some of you call me 'good Girl'.
When my sister got married I was maid of honour. Very traditional wedding, and me.
I picked out a white sleeveless top, dark blue pants, and got the best pair of colourful flower power sandals.
I rented a van, which we thought would be great for us all to go into the wedding, one big bridal party, but at the last minute, my sister said her dress would not fit. I ended up alone with my support worker. So I didn't get to travel with my sister and the other bridesmaids to the wedding.
I kept running over the dress, which I should have seen coming, but didn’t.
And I didn’t know why everyone else was so tense, because I didn’t see what went down in the car.
All in all I didn’t feel like the maid of honour.
At the reception, one of my sister’s old sweet friends was drunk, and tried to tell me I could get better.
Bloody Secret Garden fantasy.
People have tried to tell me I could get better. I even had people say, maybe you could learn to talk again. I know you mean well, but I tried the hardest anyone could have tried in rehab for two years, and before that, and there is no way I’m quote ‘getting better’. Determination has nothing to do with it and now it’s time to get on with life. You hate to take me as I am.
Another drunk woman at the wedding wouldn’t leave me alone. She asked me on the dance floor “what disease do you have?” I said “that isn’t appropriate here”. I later was told that she is a nurse, but who fucking cares it wasn’t appropriate.
She wouldn’t leave me alone, she kept taking my dead stroke-affected hand in hers. She kept saying what a good brother I had because he was dancing with me.
Oh, please!
That same brother got so sozzled himself that he sat on me and drove my chair into the dessert table, but that's just part of the danger of having fun, and he didn't hurt me physically nearly as much as the insensitive comments. You see, it isn't just a drunk woman at a wedding. It's society as a whole that mostly pities me, that thinks I’m less than I am.
I do not want your pity or your, "isn't she amazing!!" I know I'm fucking amazing, but that's totally missing the point.
It’s like sexism or racism or homophobia, fat phobia, ageism or any kind of ism, only probably they don't understand that they are doing something wrong, but isn’t that the same for all isms?
I would say it’s infantilising, but that’s wrong for infants.
Then I finally heard it.
Ableism.
And it was ableism that kept me from finding out the word, ableism.
I have a huge hunger for knowledge, and yet, so much of it is inaccessible to me. Most of it is in print, and I need it in audio.
I miss speech. There is so much to say. I always feel I'm catching up, and when I'm with people who don't know me, I often get "good girl" or nothing.
Once my hand control had fallen off, and two men were chatting nearby. I started moving towards them, looking for help. They saw me coming and suddenly fucked off in their cars.
Some people don’t even know it is customary to introduce yourself. Once this new support worker came into our flat, via my bedroom yelling out “HELLO, HELLO” without ever acknowledging we existed.
I have to type out ‘Hi, I’m Sam’ before they realise I am sentient. There is some brain variation. I, for one, have dyslexia and the stroke has made it worse. But you shouldn't talk down to anyone and the more we are talked down to, the more down we become, and again the less we can get out of life.
These are only my observations. I do not speak for anyone else, they might like being called ‘good girl’ or ‘good boy’. I don’t know, but I definitely do not.
I get 'good girl' or 'good boy' at the supermarket, post office, pharmacy, op shop, shopping centres, dentist, tram, train, airports, doctor, restaurants, street and even my own home. The only place I did not get it was at uni and that says everything.
Please don't pat me on the head or grab my cheeks. It is very patronising. It’s saying I'm bigger than you are. It’s the most invasive, because it’s physically touching. I'm all for touching with consent, but patting me on the head is wrong and it isn’t with consent.
When people have done it to me in the past I grab them by the hand and pull them down to my level and pat them back. Some have gone ‘eeek’ to me messing up their hair.
Now that I only have one hand, I grab them by the wrist, tuck it under my arm so they can’t walk off and I can say “Do not do that, it’s very patronising.”
I want to bite it.
However, I don’t want you to not talk to or interact with me because you’re afraid of saying anything wrong and in the end by saying nothing you are causing far greater pain because you are ostracising me.
Partly why some of us cry so loud and so much is because we are simply not receiving and expressing complex emotions with others, and then all of our emotions just cook up inside of us. Emotions are not something you get from others, they are always there, and if we are not allowed to use them they can become like vomit. Exploding inside of us, coming out in screams.
Just talk to me the same as anyone else.
Or no, it’s a bit more than that. Talk to yourself, search out your own internalised ableism and try to be kind to yourself. And then talk to me.
Here are some examples of how patronising behaviour can become more of a mind fuck.
You haven’t lived till your catheter has blocked and the person on the phone tells you to drink more water to flush it out and it doesn’t. Instead all that wee had nowhere to go. It was agony for three hours.
Twice.
The support workers called the nurses back, but they said all the nurses are busy, which was wrong, a nurse later said that was bullshit. I was in pain and they should have come to me right away.
The support workers called triple zero, and the answer was the nurses can deal with it. This is where what you say isn’t taken seriously.
The support workers could see the pain, but on the other end of the phone they must have thought I was just seeking attention because I was disabled and support workers were fobbing me off to them.
The people on the phone said to put a hot water bottle on it. I didn’t want anything to touch me I was in so much pain.
Just take me seriously!!!
Yes, there are some people with a disability who need support to make decisions, but people are taking away our autonomy and decision making capacity with their patronising way of being with us.
Thank fuck I have the tummy catheter now. I just wet myself if it gets blocked.
And of course you say “good girl”.
I went to a Doctor who said "tell your story” I smiled at this, but then he said “once upon a time there was a daddy bear, a mummy bear and a girl bear called Samantha".
He went on like this until I said "Enough please." I said "Can I have some more cream please". He said "Good, you said please". He then said “good girl”. He was a doctor.
I went back with a letter stating how I felt, but I haven’t got time, or even the chance, to write everyone a letter who patronises me.
Where I live has been an issue too.
I had to live with my parents for far too long. I think parents should never be your support. I will say carers because they are most definitely not support workers. They are too close to you and don't allow you to grow as a being, don't allow you to make decisions. We all know what parents can be like, now imagine you can not get away.
Looking back there were things my parents should have done differently, for starters not be so fucking obsessed with me quote ‘getting better’ and nothing else. I spent so much time out of society, I didn’t go to school and that does things to you.
And oh yeah…
My carer did some things to me that I didn't want to tell or couldn't tell or both because he was my carer. I just couldn’t, I wasn’t given a choice. I was terrified of him dying because I could not see anything else. Loving Dad, carer and abuser all in one person. I had to accept it all, sexual abuse and emotional abuse framed in adoration.
Later he would read the paper and say ‘these fucking paedophiles.’
I so wish I could have gotten away. For the longest time I felt responsible. I felt I was all wrong.
And you know what really pisses me off.
That I have to talk about him.
Here.
Still.
He was in every part of my life, giving everything that he touched a yucky feeling.
I had a picture of me and my friends and he said I want a copy of that and he didn’t understand why I refused him.
Dad wasn’t all bad and something must have happened to him.
Who knows maybe the dementia had started way back then.
But he fucked up our lives so much.
He would say be careful of who you let in. And then I got ‘good girl’ from people.
I was an illiterate, isolated, disabled, dependent, abused little kid.
The ‘no’ voter would say that’s why I’m queer.
My answer would be ‘So what’.
And secondly…
My Dad always said he was a straight man.
My Mum used to cry and scream in frustration about me.
Understandable, she had the same thing I did, and society wasn’t fair to her, and she knows how hard it is. Full blown dystonia is torture. The constant uncontrollable movement. Every part of me was tearing itself apart.
But how much of that was trauma feeding the Dystonia.
If only the medical profession didn’t see the mind and body as separate.
If only we could admit that to ourselves.
It was too much for Mum to hold in.
I did back away from her. Into his arms.
About the other shit.
I eventually had an operation which reduced my Dystonia significantly. I kind of learned to read and write and was able to move out, but then the Dystonia was getting worse again. I was exhausted by just trying to live my life. I kept having to go back to my parents because I was so tired. I didn’t get enough funding for enough support.
Then I had another operation which gave me a stroke. And there Dad was - feeding me.
I spent five months in the hospital after my stroke and 18 months in a nursing home because I needed support and they didn't give me enough funding to get it at home. The smell and the noise alone was horrible.
I had to give up my flat. A friend of mine on Facebook said how good it was to be home after she was in hospital. I never got to go home.
And you dare call me 'good girl'.
People said ‘You are strong, Sam.’ Why do people say that? I am so tired of people telling me I am strong. Like what do they mean? I can't help thinking it is so they feel better and I totally get that.
But what about me?
I know I'm strong, but it only goes so far. Like how strong do I need to be before I break? In many ways you are as strong as the people around you and I didn't feel strength.
‘You are so brave.’
What I hear is someone saying I would rather be dead than be like you, why haven’t you given up?
I am not brave. I just have the ability to talk! The ability that society is squashing out of so many others. And I have found more pain in keeping quiet.
I had some lovely nurses, others were patronising, The main thing was their attitude, I was someone without a say to them, and that is still hard to shake off.
But I had the worst nurses too and they made my life hell. I was someone heavy, someone that was making their job harder. Every action I did would be greeted with suspicion or “go to sleep now.” It wasn’t bad enough for management to really do anything, believe me I tried, but it was constantly there. I not only had a stroke, but had to go through all that being treated as sub-human too.
I complained to the counsellor about it. She said 'Now take a deep breath.'
I had told her I was mistreated, and she said 'Take a breath.’
Dad would always say ‘You make mountains out of molehills.’ Dad’s a bit of a molehill now.
I really thought about killing myself.
I loved the little bit of life I had had, but wondered if it was worth it any more.
Before I even had the operation I was always so exhausted by coping with the Dystonia and most of all I found it so hard to interact with people. I thought if the op didn’t work then I could decide. I wished the doctors had just let me go for the longest time.
A good thing to come out of the stroke was I wasn’t exhausted all the time, because I can’t do much for myself, which is stinkingly ironic.
We were taken to a beach by the nursing home and I thought I could go back and roll off the pier, but knew that would be horrible for the people that had shown me the place to find out later I had done it there. And then I got the offer of a place to live at that very beach.
I mean WHAT THE FUCK?
Handy!
You tell us we must not kill ourselves, but you didn’t give enough support to have a good life.
I don’t like telling people this because if I needed to, I do not want to be stopped.
But part of me not needing to do it is telling you about it.
And then some of you call me ‘good boy.’
Then things were a bit better, but I have been through so much and am going through so much that I often do crave that oblivion. It’s not ok to call me ‘good girl.’ It’s not ok to feel kinda homeless for five years. It’s not ok to misunderstand me so much.
My Dentist said I grind my teeth and my left eye has twitches from time to time and that has nothing to do with the Dystonia.
So far me wanting to commit suicide is a symptom of society, nothing else.
And you call me ‘good girl.’
The hospital OT said to the group home I can cook. I thought ‘What? No! No!’
I’m not going to spend my time doing something which is so hard for me and that someone else can do easily. Yes of course I would always rather do stuff for myself, but my body used to hurt just to make a sandwich. It was what drove me to have the op in the hope it would make things easier. It’s uneconomical, how am I supposed to have a job too, where my skills and energy can be better used? And it simply wasn’t true.
Whenever I hear about a person with a disability managing to do something, I think: does it take the right amount of effort that that individual can maintain it while also having a good life?
Last time I didn’t feel comfortable to say much about the group home, because I was still living there. It was so much better than the nursing home that it took me a while to see the behaviours fully for what they were. They were not bad people. Like the nurses and the rest of society, the patronising behaviour was instilled in them. And they were so rushed and overworked.
As a result they were often filled with misunderstanding which led to microaggressions and sometimes big aggressions.
Like I could see it was better to put my cream on first, but the support worker would aggressively say “I’ll do your cream later.” Little things like that, day after day after day, took their toll on me.
I’m actually really shy of anger, I find it very triggering. Maybe it would have helped if I had told them my trauma history, but I wasn’t ready to and they shouldn’t have behaved like that in the first place.
Often they would say things about me that I wanted to correct, but they would hurry off before I could reply. Often it was too small to call them back, but it was still something wrong and these things have a way of building up into a false picture of me. And this would create even more misunderstanding.
I was called rude, impatient and fussy. And I was one of quote “the good ones”. They genuinely thought that it was ok to say things like that, but they didn’t understand how it was damaging.
A few people there have said most people with a disability are hard to work with. One actually said they were bad. I could not help but get very depressed at this because every way you look at it, it really hurts on many levels. They could be right and that makes me feel very alone. Or they could be wrong, because how many other disabled people are still tormented by the system, by society not understanding them?
Again, I can see this horrible feedback loop of able-bodied people not thinking and not treating us right, and the person with a disability getting fed up with it all and with our often limited forms of communication lashing out or seeming like we are lashing out, and able-bodied people getting all defensive and not treating the situation right, and the person with a disability getting ever more fed up, lashing out yet more. Anger becomes the default response on both sides. It can start so small. I could feel it happening to me and all the time I’ve had to fight it.
A few of the support workers often didn’t support me right, like didn’t sit me on the bed right and true again they were often understaffed, but then some, again couldn’t be told because of the patronising behaviour.
The organisation that ran the group home was unable to see the issues.
And there is so much hurt for us, often through years of neglect, me included, and then we are all forced to live together.
The main thing was I wasn’t getting enough sleep. : It was the wrong environment for me and well, anyone, I feel. I needed out.
I needed out for 3 years.
Then they say things like,
‘Good girl.’
Oh you fucker.
But oh no…
You are not meant to show any anger.
Ha.
How are we meant to have feelings of our own? How are we meant to empower ourselves with the constant misunderstanding?
The NDIS is meant to make us equal members of society.
I had been offered this lovely place to live, but the funding wasn’t approved yet and it had been months. Months of me biting my hands off. It was terrifying because I was in the West and they hadn’t rolled the NDIS out there yet, but I was saying I need it now. I was fucking demanding it!
I was so scared that I may not get the funding after all that and these years of waiting would continue. I was getting even less sleep.
They eventually listened. The first meeting the NDIS planner said ‘Oh she goes to uni, she must be all there then’ in front of me. I was trying to stay on her good side so didn’t say anything. And even then when I got the funding I was made to feel insignificant. The organisation that had offered me the place to live had been told nearly 2 weeks before the NDIA emailed me saying congratulations you have the funding.
Thank you for finally telling the most fucking important person in this whole thing.
Oh no it was totally fine to tell all the able-bodied people before me. I have only been sleeping badly for the last 5 years.
Hold on to your hats, it got worse.
The organisation that runs the group home wanted to renovate so they could get the maximum amount of funding under the NDIS. So we were shipped off with no notice and to a place really in need of a renovation. Like the light often didn’t work in my room. All new support workers, even more noise and no privacy again.
Like, I got day old urine flicked on me because my night bag hadn’t been cleaned again, and the person supporting me to go to bed didn’t know what they were doing.
How, after all my letter writing, am I still here?
How, in 2019, was I still here?
The same TV over and over again. The music over and over again. The ads over and over and over again.
Mum, the hospital, the nursing home, the group home and now this. All full of screaming. I got sick and was sick for months after.
I'm in my own place now and it is so quiet.
But it took ages for the screaming to go.
And it never will really.
Things are mostly better now.
It’s just management patronising the hell out of me.
I have some choice in support workers, and the support is set up around me. Mostly nobody is rushing or getting called away to someone else, and I’m always the boss.
But support workers are in higher demand now with the NDIS, so I really don’t have much choice in who I get.
We need more support workers, who know what they are doing.
A support worker said to one of my support workers ‘are you her carer? It’s wonderful isn’t it, caring for them, we learn so much from these people.’
They didn’t know what they were doing.
For anyone still wondering: that is super, super patronising, on so many levels.
We need more support workers who know what they are doing.
Support work can be hard. And I can’t even tell you it’s rewarding because I’m sick of my life as always being a source of brownie points for others.
But yeah everyone has a right to a life, and you would simply be helping to support that.
We all need support. I need support.
We all need to face this trauma that we have made, because it’s too heavy on the few of us.
I see people who have given up, or never got the chance and they are shrinking back inside themselves.
The NDIS has a huge job on its hands - turning around generations of neglect.
And NDIS should be all of us.
A new support worker said ‘What a good girl.’ as I put my bowl in the sink.
‘What a good girl.’
‘What a good girl.’
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‘What a good girl.’
‘What a good girl.’
‘What a good girl.’
‘What a good boy.’
‘What a good girl.’
‘What a good girl.’
‘What a good girl.’
To me, it’s an unhelpful value judgement, on whether you’re ‘good’ or ‘bad’. People just should not be uttering that kind of value judgement towards another person. And to refer to a grown person in the juvenile binary label of girl or boy is very insulting, as it discounts the years and experiences they have accumulated.
I am WOMAN!
‘What a good girl.’
Together they make for a horrific cocktail of patronising language. Unconsciously designed to put the person saying it up and therefore putting the other person that it is said about down.
I would say it’s infantilising, only I don’t believe children should be spoken to like that either.
So yeah, I wear PJ pants. Because I couldn’t give a flying fuck what the world thinks. The space dinosaurs are going to eat them.
So would you stop calling me ‘good girl.’
Or ‘boy.’
There is a lot of hurt here.
Don’t you dare say I’m amazing, I’m brave, I’m so strong, or any of those words just because you feel helpless.
This can be made better.
We can make it better.
Thank you for listening.
You should listen.