Persona

So a thing just happened, and it happened after a bad thing happened and no amount of ‘but nothing happened really so you’re fine’ will turn off the flight response from running into a former coworker in the shops, psychobabble be damned.

 

So I was stressed, obviously, and came straight home, and then I got distracted running errands for my brother, and I sat for a minute to have my meds and try to stave off the migraine that’s been ramping up for a massive peak (hello, Victoria!) and the doorbell rang. I forget why I put the batteries back in the thing, because it’s loud and I hate it and it hurts.

So I went to the door, stopping to pick up my phone to type on and get the keys. It’s about 20 steps. I had made it halfway before it rang again, because the concept of distance between a person and their front door requiring time to traverse is apparently beyond people (it’s a thing – one time I was right by the door and by the time I opened it a delivery person had made it back to the van, on the road, because everyone also walks faster than me, especially when my knee is black with bruising).

‘Just wanted to let you know the light is on in your garage!’

Well, yes, otherwise it’s pitch black and even in the middle of a summer day with no clouds there is no seeing to find the keyhole on the car door.

I signed that it was fine.

‘And the door is open!’

Yes, that is also true, because it’s stuck. Because that’s what happens when there’s wind and then dirt blocks the rails. And it’s also not your business.

I signed that it was fine.

‘But the light is on and the door is open!’

Yes. I know. I am signing to you. I have my phone to type to you but you keep talking and I am not typing because I cannot make you understand that I am typing to you, so I am signing, and you still don’t get it.

‘The light is on! Do you want me to come in and turn it off? The door is open! You should know!’

I do know. And if I didn’t, you just told me multiple times. This is why I am signing to you again that I can’t talk. And you’re still talking over me signing, so I am giving you the finger and waving to you so that. you. leave. me. alone. because. this. is. my. safe. place. and. you. are. interfering. and. I. want. you. to. go.

 

This is a trend I am seeing. I don’t talk, therefore people assume that I’m incapable of basic stuff. Like the other day, I was directed to wait in the self-checkout area for the attendant to return with my tokens (the superhero ones for my nephew) and a lady came up behind me and asked if I was done and since she was behind me and therefore I didn’t know she was talking to me or what she was saying, she asked if I was okay. And then told me not to move so she could get me help. I didn’t look to see what happened once the attendant came back and I collected my tokens and left.

Like the time the Jehovah’s Witnesses were at the door and I was signing to them and they wanted to come in and help around the house. They even came back a few days later to check on me, an effort which was averted when I saw them dumping rubbish in my bin and I just happened to bump my car horn and scared them off.

Like the time I was in self checkout at another store and the attendant took over for me and somehow managed to miss half my items and then left it on the ‘please insert card’ screen and took off. I was then unable to finish checkout, and the people next to me started trying to touch me, and I tried to defend myself and that was when I discovered they were husband and wife, because the husband started screaming at me for trying to hit his wife. (I did complain about that. Nothing happened, obviously.) Or the time in self checkout (again, seems they’re not very self-checkout after all) when the scanner was broken and instead of allowing me to move to a working one, the attendant reached over me from behind and started typing on the screen, while yelling at me that I had to put the bag down for it to register the weight, all while ignoring that the scanner was not picking up items in the first place. She even came back to scream at me again because I didn’t scan an item on the broken scanner while she could see that I tried to scan it and it didn’t register, and started taking items out of my bag. I tried to complain, but she came and stood over me and then a huge very male (and acknowledged as male) person got involved and everyone started talking over my head and they threw my items on the ground because I tried to explain that I don’t like people touching my things. (I also complained. Also nothing happened.)

 

Like the time I was approached six times in ten minutes by staff members at another store – because they couldn’t apparently work out the first five times that I didn’t need help (it was a hardware store – this behaviour, for future reference, is miraculously averted by wearing sports guernseys, optimally bearing the name of the store as a sponsor) one person chased me across the store and started patting my back while I was in line at the checkout while asking if I needed help. Really. I did complain, they said sorry but their staff are trained to ask people if they need help. I pointed out that it is generally much preferable to not come up behind people and touch them. They took it under advisement.

 

Like all the times people started writing to me despite having to have known I could understand them, or changed the way they talk to use small words spoken at high volume at slow pace. Like the times people pretended they didn’t know what I was signing (‘no’ and ‘vomit’ are pretty obvious, right?) in order to yell at me. Like the time I was threatened with the police for not talking, or the time someone offered to send a doctor to my house (See: Bubble) instead.

 

Like the times I was denied medical treatment “because you can’t talk so I can’t have a conversation with you”. (Seriously! Typing isn’t a thing. Sign isn’t a thing. Translators aren’t a thing (oh wait, we can’t have translators because of privacy, which is also a thing)).

 

Like all the times I said I was fine and people didn’t believe me, or started telling me I would be fine if I ate more (but didn’t pee) or drank more water (and rolled around like Violet Beauregarde from the bloating) or took magnesium or zinc or just waited it out (HAHAHAHAHAHAHA).

 

Like the time I got desperate and reached out to a wellbeing service only for them to start arranging appointments for me with doctors I said I could not get to, and to find out that they had made these arrangements while under the assumption that my not being able to talk meant they would not talk to me. I was meant to be grateful that they breached my privacy like this and I got told off for daring suggest that they were not absolutely correct in their version of my disability (and then they tried to pawn me off on a generic helpline).

 

I am no less of a person because I can’t talk. I refuse to be treated as anything less. Asking to be treated the same as anyone else is a thing I shouldn’t have to do.

 

And yes, I know the light is on in my garage. I knew it before you decided your need to inform me of the status of my house was more important than preventing a pain peak, and I knew it when you told me the first time.

 

And I strongly resent the implication that because I cannot talk that I also am incapable of flipping a light switch. Seriously. ‘Do you want me to come in and turn it off for you?’ No. I want you to leave me alone so I can finish cleaning the door so it goes down.

 

And I hope you were watching while I cleaned it, getting metho fumes the day after being assaulted by shisha fumes (seriously, no smoking zone but shisha is okay?) and cleaning out enough dirt to fill a jar (no heart included). And running the door up and down. And climbing up a ladder to put silicon on the tracks. And having to switch hands because my right arm still thinks it’s dislocated even though I did put it back in.

 

 

Seriously.

 

Do I get my bubble back now? Except I’m reliant on delivery food right now, because I can’t lift a saucepan if it has anything in it, and they insist on coming up to an hour early (with cold food, wtf? And who puts the mushrooms on top of the cheese? It’s pizza. Cheese goes on last, even when it’s a vegan coconut-based substitute. Really. It works the same even while it tastes more like creamy lettuce). And the painters are coming next week (yes, which means the paint has been stripped off for two months in which there have been storms and this has caused damage, thanks! really helpful!) And I’m still so tired from having my brother visiting and finding out that yes, I really can’t miss my meds if I’m doing anything other than lying out flat on the floor.

 

I am eternally grateful for this one pharmacist who has told all his staff members just to give me my meds without going through him. They see me coming and have it ready. But they still ask if that’s what I’m there for, and treat me like a person. I lost my note today and that they still gave it to me made me cry.

“means well” means nothing

 

You know how you point out to someone, or their superior, that what they’re doing is hurtful to you? And they say “well I/they meant well” as if that’s the end of it? And you feel that little curl of rage?

 

I tried to go back to dance. I found a small school that was meant to be “a great community” and had rave reviews from people who said they felt accepted and like family. I wrote to them to say I have a disability, can I chat to someone to explain it and see if I fit? I heard nothing. I tried again. Nothing. I signed up for a trial class.

“Oh, you’re the one who emailed me! I starred it, and I meant to get back, because I thought ‘I really want this girl here!’ but I was so busy!” Strike one. It also involved hugging. Definitely strike one.

We went around in a circle and said our names. I signed, and people murmured. “ohhhh that’s so pretty!” Uh. What?

 

So then my (former) psychiatrist found out and made it a part of my therapy, despite me explaining carefully as best I could how I had this thing now that was mine – not therapy, not paid for and monitored by my mum, but a thing I wanted to do that I was doing that I could look forward to because it was mine. That was where I found the spoons to finally break ties with him, because spending one’s entire life as ‘treatment’ is exhausting and fruitless.

 

I kept going with it, because I’d been cornered at the end of the trial lesson and interrogated on whether I was coming back and only allowed to leave once I’d agreed, so I’d paid for the term anyway.

Continue reading “means well” means nothing

it never ends

TW: privacy, dentists, grief, references to inter-family abuse

 

So, I managed to get home for my grandmother’s funeral after all. This came about because, by virtue of not driving the six hours each way to collect me, my mother attended the meeting with the funeral director and took the responsibility of organising the priest and so on. (It was also necessary that she attend since she’s the one who has the lease on the grave, but such practicalities don’t actually rate as necessary when one isn’t thinking rationally.) A few days later, she offered to pay for a flight down, and then couldn’t understand why it didn’t cost several thousand dollars.

Then she admitted that she hadn’t wanted me to come because she thought the funeral would be too short to be worth it and she didn’t want me to remember it badly. (Or something, I mean, seriously?), and then that she should have handled arranging things better rather than letting everyone else take over, after it came out that other people were upset about it too, but too afraid to speak up, because about the only thing that part of my family doesn’t do to each other is resort to physical violence.

Continue reading it never ends

I Am

TW: family drama

The fact that I have a disability does not change the following:

 

I am thirty one years old and I am capable of making my own decisions.

 

I am able to ask for what I need.

I am able to take what I need.

I am able to speak for myself and advocate for my needs.

 

I am able to self-care. I am able to assess when I need self-care and take it.

I am able to see when my needs are not being met.

I am able to stand up for myself.

I am proud of this and even though I am not perfect, I am proud that I still try to be better so that I don’t fall further down than I can claw back from.

I can’t talk but I still have a voice and I still have the power to use it, even when it only means I hurt less instead of I hurt more.

I have the ability to take myself out of harmful situations so that they don’t affect me as much as they could.

I have the ability to say ‘No’.

 

Continue reading I Am

Road Rage strikes again

TW: MVAs, verbal abuse, police people

 

I have my new computer at last and there are so many little things I know now to appreciate – a dimmed monitor, a seat that hurts less, an ergonomic keyboard…

 

This just means that I am able to relate to you today yet another example of why I, as a person with a disability/disabled person/neuroatypical person/etc., will go out of my way to avoid dealing with the police. A lot of little things happened today to put me out of my routine and in a different place at a different time for this to happen.

Continue reading Road Rage strikes again

Eating Out Is Not A Team Sport

TW: harassment, mentions of rape

Okay, so one of the local papers back home has started pushing a new initiative, designed to create more conversation. “Encouraging conversation throughout the community,” actually. This is a local council funded and approved initiative, suggested, of course, by an old white man.

This initiative is a pale purple, business-card sized sign that said ‘Please join me’. It is designed for “single diners at cafes”.

Because, you know, there must be something wrong if someone’s eating out by themselves. And of course they want to not be alone, right? To the point of having to put an invitation out on the table for any old stranger to come and sit with them, no less.

Here are reasons someone might dine out alone:

  • They were shopping and stopped to eat something.
  • They are having alone time to recover from dealing with other people. This could be a parent having precious alone adult time away from dealing with kids and family, someone on their lunch break enjoying not dealing with co-worker gossip and pressure or just being away from a loud office, someone who just had a breakup and is reasserting their individuality… it could be anyone for any reason.
  • They want to enjoy food without having to make it a performative art.
  • They want to enjoy food without having to make conversation.
  • They are working while they are eating (particularly popular as the stereotype of writers in coffee shops, but this could still be anyone.)
  • They want to eat food they haven’t made themselves.
  • They want to.

The problem I see with this situation is based in my experience eating out alone, when that was a thing that was more possible than it is now. (Now I just get ignored at the counter unless they have a bell I can ding several thousand times.) And not just then, actually. I go out alone because I have no friends, right? Well, I went out alone when I had friends, too, and enjoyed it much more because I didn’t have to put up with people talking to me during movies, insisting on photos, complaining about my fidgeting/anxiety/whatever, running off in the wrong direction, stealing food off my plate and contaminating it (seriously, I was told off at family dinner where they insisted on having all the plates in the centre to share, and I insisted on taking my serve from the safe food first (and then found prawns underneath the vegetarian rice, wt?) and then my uncle was taking food off my plate because I wasn’t eating it fast enough. The night ended up with me in tears when we went to a zaharoplasteio for dessert and they just started picking things out and of course, there was nothing I could have, and then I threw up in the very sterile guest bathroom.). There exist people who won’t go to the movies unless they have someone to go with. Society still tells us that meals must be eaten in a group.

So when I am out alone, I get the following – all real examples:

  • “Is this seat taken?” Because, you know, when there aren’t enough seats at one table you just go take from others. Then I get told off for not responding correctly. One time, this escalated to a man complaining to event organisers that I did not talk to his wife, who was standing outside my field of vision, and resulted in laughing at how headphones should be banned. This exchange did occur where I could see it. Another time, it was a segue into the next one.
  • “Are you here alone?” This turns into either being hit on, or starts into a social commentary. “You’re so brave! I could never come to a gig alone. If my friends weren’t here, people would harass me all night! And I need someone to drive me home because I’m drunk. Are you drunk yet? Do you want a drink? No, you can’t not drink, it’s a gig! I’ll buy you a drink. Why don’t you drink? I know the singer. Did you know you can’t be vegan because occasionally bugs get caught in industrial factories and end up in food? So you shouldn’t try to be vegan, there’s no such thing. And there’s no God, either, because you eat bugs.”
  • “Oh there’s no room, I’ll just sit here, if you don’t mind.” And they are unpacked and taking up the entire table before any attempt at a rejection is made. And, of course, they talk. Because you have to talk, in social situations; you can’t be quiet because it’s creepy/rude/whatever. (I’m very creepy and rude. My brother called me scary because of how I dress. I’m proud of all of this, naturally.)
  • Being hit on. Yes, I mentioned it before. It is a thing that happens, a lot. “Are you waiting for your boyfriend? You don’t have a boyfriend? Why are you alone, then? A pretty girl like you can’t not have a boyfriend. You really don’t have a boyfriend? I’m not here with anyone, let’s hang out? And can I get your number? What are you doing after, want to go back to mine?” One time, in full view of all his friends (including two happily straight-and-engaged women), I was dragged around by my corset and adopted by a guy who refused to even ask my name (he looked like Tony Stark, so it shouldn’t be surprising). He wanted me to go home with him, made plans for me to cheerlead at his rugby games, and then started screaming at me for being too busy texting to pay attention to him when I was trying to type to him. The latter occurred after I got hit with a massive migraine, and one of the girls woke up and diverted the rest of his friends away so I could get out. He insisted on walking me out, reassured the bouncer that I was his and would be looked after (seriously, everyone can tell when I get a spike in the pain phase), and then started screaming at me in the middle of the street for not going home with him and not giving him my number. The fact that I didn’t want to be with him, repeatedly tried to get away from him, tried to leave without him… didn’t register for him at all.
    Another time I was at a concert, and I’d reserved seating. The venue screwed up and double-allocated the table, so I was there with five other people. One of them was very accepting and typed with me… and wouldn’t stop when the show started. I missed the entire show, because even putting my phone away and turning towards the stage wasn’t good enough – you don’t need to hear typing over a metal show, after all. Because men have learned now to text you before you leave and make you show them the text to prove you got it so that you can’t give them a fake number, and the only way he was leaving was if he had my number… it took about a week before he started sending me abusive texts about not responding to him fast enough.

Now, of course, you might be starting to see the issue. Compounded with the card being tiny, so that anyone would have to already be within your space to be able to read it… people who do not display the card now have an extra reason to be wary of people coming up to them. “Oh, I thought you had a card,” because their phone was the same colour. “You’re so pretty; I came to see if you had a card!” These lead to the most natural next step in any pushy, clueless, not-necessarily-entitled-male person’s playbook:

“Well, I’m here anyway, so…”

The one thing that can be established from my experience and those of the people whom I have been around, is the same thing that can be established from the not-so-recent trend of fake engagement rings… the people whom we most want to avoid are the people who will not take notice of such a signal. (And believe me, they don’t, and not just people who want the sex for themselves, trust me. That is, however, a story for another time.) The absence of a card doesn’t mean that people who are eating out alone won’t be bothered as they are now.

The presence of a card, however, is an invitation.

So far, I’ve talked about how people might want to be alone and be unable to deter people who intrude on that because people are either entitled or simply can’t comprehend that people might want to be alone.

But if you’re alone, and you’ve put out a thing which signals a blanket invite to engage with you…

  • Do you get to turn away the man who gives you vaguely unsettling vibes, whom you’d rather not know? Will he use the card as leverage to devalue your rejection?
  • If you’re about ready to leave and someone sits down, how do you extricate yourself easily? “I was just leaving, sorry,” is synonymous in film language for someone who is leaving to avoid someone, or to give privacy to someone else; what if someone doesn’t accept it as an excuse?
  • What if you start a conversation and then you become uncomfortable? You wanted it, right?

And so on.

Hopefully I don’t need to link people who read here to articles which relate incidents of rapists being acquitted because of various forms of invitation from the victim, not necessarily intentional or actual invitations. An actual card that says ‘please join me’? Well, it’s going to take a kind of judge we don’t necessarily have, and a very well-educated and enlightened jury to get past the rape culture and understand that isn’t ‘join’ in the carnal sense. The defence lawyers I know would certainly use it. The prosecutor I know? Raped me and only stopped because he said I wasn’t into it enough. So yeah, I think that’s going to become an issue.

The key issues in all this are, though:

  • An old white man thinks people don’t talk enough, so people alone in public have to signal that they’re alone and engage with strangers.
  • The inability of society in general, and men in particular, to accept that people may wish to appear in public alone, means that people (especially people who are in a vulnerable position compared to the ones who approach them, and/or identify with one or more minorities) can’t say no to company and expect it to be respected.
  • Because people can’t say no, or their no is ignored, expecting people to be respectable, civil people who can have an exchange that is like:
    “Excuse me, do you want company?”
    “No.”
    “Okay, have a great day!”
    is flawed.
  • The local council thinks all this can be fixed by encouraging people to not only signal that they’re alone (i.e. make themselves a target), but create an environment where people who don’t want to have a card and deal with strangers are treated with hostility. (And they are. I left a comment on the post expressing concern that this would affect people who don’t want company, and I was told that the council should make a ‘leave me alone’ card especially for me.)
  • The concept that we need to signal at all, either way. If someone’s alone, why do they need to be engaged in conversation at all? Why is it so bad to be alone in public that the local council feels a need to spend money to fix it? If someone is alone and wants to meet people, aren’t they going to be able to do that any other way? Like, for example, going up to people themselves and asking if they want company? Or are people so afraid of rejection becoming violent that someone deemed the card a great idea so that people know they won’t be rejected? Because if that’s the case, well… you know how the police say things like ‘don’t let your mail pile up while you’re on holidays because that might signal to burglars that nobody’s home’? It wouldn’t take much for someone to use the card as a way to case potential targets.

The last time I went out to a thing by myself, I went to the chemist and then to a movie (Ghost in the Shell! It was really pretty! I have opinions about whitewashing! I am white so I will keep them to myself!). On two separate occasions within the four and a half hours I was out, I was approached by two separate people-presenting-male on the street. I think one was telling me I was pretty, but I didn’t understand him, just that he started first from behind me then kept coming at me from the side. I was able to change direction and lose him. The other was calling out to me from a few metres away. I was able to keep limping on and lose him.

If I was displaying a card that said ‘please join me’, would I have been able to defuse those situations gracefully? Would they have taken it as an invitation to insert themselves in a way I couldn’t easily escape from? They were both bigger than me, and while by some miracle I have retained most of my strength through my body turning into not-my-body, I don’t have the flexibility or speed to realistically have expected to win a physical encounter. Would I have retained the choice not to engage? Clearly, the signals that I wasn’t interested – headphones in, not looking at them, not stopping – weren’t working. (And, therefore, my custom ‘leave me alone’ card, suggested, of course, by someone who lists their gender as male… probably wouldn’t either.)

Being alone, basically, is construed as an invitation in itself. I have countless more stories of being folded into groups or conversations against my will, which only violence or extreme rudeness would have gotten me out of, because saying no did not. Sometimes, they even hide it behind being protective – ‘You can’t take the bus alone at night! You’re only nineteen! You’ll get raped!’, or ‘It’s dark, I’mma drive you to your car even though it’s half a block away on a well-lit city street with a bunch of open restaurants, people, and cameras!’. We don’t need to give people an excuse to insert themselves into other people’s spaces when they do it anyway. We don’t need to be endangering people’s right to choose who they spend time with by “encouraging” them to issue open invitations.

It’s okay to be alone. It’s okay to want to be alone. It’s okay to enforce that.

My best meal out by myself was before I was vegan, after I went dairy free. There used to be this little cafe in the shopping centre, with green walls and a Greek name, between the newsagent and the jewellers. I used to get on the bus on my day off from uni and go to my shopping, and then go in there. Their chips were the best – fried, with breadcrumbs  dusted on them, in a way I’ve never been able to replicate. They let me have a bacon and egg sandwich with no butter and no cheese. If I didn’t eat it all, because even then a sandwich and a potato was too much for me, I was able to bring the rest home with me. I would go in and I had my spot in a booth with my back to the wall and I was able to see the whole cafe and the people walking past. There was always a paper to read.

I was never bothered by anyone.

One time I went to the movies, and I was polite to a guy in line who just kept bugging me. I gave him a fake name, I didn’t give any personal details, I deferred plans after, I kept trying to end the conversation, and none of it took. Because I had pre-bought my ticket online (back when this was new and VIP was new, I just remember the line and that I was there at opening for first showing, not the actual movie at all or even what it was), I wasn’t worried about seeing him inside, since he had also pre-bought his ticket and was in a different cinema.

Somehow, he made it past three sets of ushers and the VIP security door (because I used to love the reclining chairs until one time an usher decided I couldn’t recline them by myself and came, pushed my hand away, and put the leg rest straight up – less than two weeks after I had abdominal surgery… oooooooooooow…….. the manager thought a voucher would fix it! I went back only twice, once because I already had my ticket for the KISS live concert, and once because Kingsglaive) to come into my cinema, find my seat, and lean over to say he hoped I enjoyed the movie. I dodged a kiss and there were ushers waiting to escort him back out.

In neither case was I overtly signalling that I wanted company or didn’t.

I don’t believe the cards are a good idea. I also don’t believe that they will have the intended effect. All I believe they will do, based on my experience and knowing the type of people in the area, is provide a small veneer of justification to approach people and then not leave when asked.

I don’t like the implication that this is for “single diners” or the implication that people who are alone shouldn’t be alone.

And most of all, I believe they present a risk, of a nature that an old white man, who has spent his life being socialised to believe that his company is always wanted and valued (etc. etc.), simply cannot comprehend. After all, he’s much less likely to have been a target and much more likely to have been an aggressor, oh, and been praised for it.

He doesn’t have to consider the possibility that someone might come up to him and use the pretense of the card, or looking for one, as a way to insert themselves where they would otherwise be rejected. He doesn’t have to worry that putting out the card would lead to someone coming up to him and abusing him for the way he looks or who he is, and then using the card as an excuse not to stop. He doesn’t have to be afraid.

In a society where none of us would be afraid, we wouldn’t need a card anyway.

(Incidentally, this is all much the same reason I refuse to do things like carry a note that explains my disability, which apparently renders any and all complaints about being mistreated as a result invalid. Like, one time I was threatened at a concert and yelled at by the security guard for not leaving fast enough – two minutes after the show ended. I probably made a post about it? Broadcasting these things doesn’t make one safer. It makes one a target – just like mail in the mailbox when on holidays.)

 

Edit [6 April 2017]: And now it’s national news. No, really. And the longer story is even more ick. I have incoherent painragethoughts.

Why I’m Not Attending Easter Masses

TW: Catholicism, discrimination, judgemental people, sexual harassment

 

It’s probably going to surprise people to know I’m Catholic. I’ve done the mental gymnastics, and it’s a thing I’m happy to identify with and it’s important to me, so that’s it for that.

Part of this is that I do not go to Mass. Every time I pony up and pull myself together and go, I end up coming home exhausted, an emotional wreck. Physically, it’s exhausting; I don’t kneel, but I still have to get up and down and walk around enough that I end up lying on the floor, that dreaded band around my waist, and my knees protesting every time I try to stand and my ankles twice their natural circumference, nearly perfect in their swollen roundness.

I would happily cope with that if Mass was a safe space.

Continue reading Why I’m Not Attending Easter Masses