When Strength Isn’t Enough

Trigger warning: this post contains some discussion of suicidal ideation, prevention, and issues relating to ableism and depression.

I’m currently berating myself.

On Sunday morning, at 12:50am, when I managed to get my car inside and stumbled in, I swore to myself that I was done with live music. I had left home at 9am the previous morning, and spent 12 hours curled up on the floor because there were no seats, and I wasn’t able to hold myself up. I wasn’t able to leave, either – there were far too many people between me and the door for me to stumble out, my bad leg twisting under me if I put weight on it in just the wrong way (being, most every way).

I don’t mind the extra stuff I have to go through to make concerts safe for me – I don’t enjoy waiting outside for hours in line, just to ensure that I’m near enough to the front to be able to get a seat or a spot by a wall I can lean on. By the time I get in I’m already sore, and already tired. I have to spend most of the day dressing myself and I have to make sure I have extra medication, that I can reach everything in my bag in the dark – these things get jeopardised by overzealous bag checking, where everything gets crushed and reorganised and I have to wipe my bag down with antiseptic wet wipes and check my autoinjector for damage just to remind my brain that it’s not dirty, it’s not broken, it’s okay. (Bag checks are not legally enforceable requirements. Touching bags during bag checks is battery. Good luck complaining about that.) I like supporting my friends, who aren’t terrible, and honestly? It’s the only time I can justify leaving my house that doesn’t involve purchasing medication or a doctors appointment.

 

Live music is nearly intolerable when I’m curled up on the floor, my head exploding with new pain every time the strobe lights flash in my eyes, my legs numb because despite the padded jacket I brought to sit on the hard floor is still pressing on my nerves, my spine crawling with synesthesic agony every time someone whistles or an overdriven guitar tone slides up on a high minor chord. The thing that pushes it over the line from a discomfort I’m willing to endure for my own personal gratification (in enjoying music) and in supporting my friends and all the other musicians and people who take time out of their own lives to put on shows, is when that isn’t good enough.

See, despite everyone else managing to ignore the person at the back, not getting in anyone’s way, not making a fuss, one person was offended. That person had a microphone. By the time he was on stage, I was exhausted, and it was all I could do to not cry. It wasn’t good enough for him that I was there, that I had paid for entry and waited outside for an hour and a half in the cold, that I put up with the pain and the anxiety and the smell and that I was doing my best.

I assume that he didn’t know how insensitive he was being when he directly addressed me, calling me out for not standing close to the barrier with my arms above my head, hands formed into horns because when Ronnie Dio wanted something special he didn’t realise he would start a trend of conformity that would buck the entire idea of “something for us, the people who don’t fit in”. I assume that he didn’t know how it would make me feel, to be singled out and stared at because I wasn’t participating in the same way as everyone else, in a way that pleased him. I assume that he didn’t know that what he was asking was physically impossible for me, or that at that point I was only able to understand that he was talking to me because the music had stopped, and I could guess his words from the way people reacted, from how he was pointing to me, from how he singled out another person, just after.

I don’t know what he was thinking he’d achieve, but I got home and I swore I wouldn’t go to another show. I was done. In effect, he’d driven me away, because what he said, no matter what his words were, was ‘you’re not welcome here’.

 

Then I remembered I already had tickets for another show, and the other reason I go, that I book my tickets in advance and pin them up in chronological order on the board where I see them every day, is to have something to look forward to. There are days when the only reason I hold on is because I have that something. There are times when I literally repeat, over and over in my mind, ‘I can’t kill myself today. I can’t give in. I have to keep going. I can kill myself after *insert event here*’.

By saying I’m not welcome, not only did he basically ensure that he lost a potential fan, and definitely ensured that he would not be getting merchandise sales from me, but he also told me that because I can’t participate in the correct way, I shouldn’t be going to shows. The very thing that keeps me alive, the tiny light that is meant to be a wedge in the depression that comes with having debilitating physical and mental illnesses, my only form of social interaction, is a thing I’m only meant to have if I can participate in a certain way, being the way he approves of and the exact same way as everyone else in the room. (I imagine Dio raging, along with every other rock and metal musician who claims to value individuality. When did we become sheep?)

 

So today, I forced myself to stay awake, and I hovered over the ‘get tickets’ button, and I closed down my computer, and I didn’t buy tickets, because I didn’t feel like I should take away a ticket from someone who could go, who could talk in the meet and greet, who could stand and do all the things.

And then, I came back. I didn’t sleep, so I was even more tired, and I bought tickets, and I organised a plane and a hotel, and now suddenly I’m one of those people who flies across the country to see a band. And because of that one man with a microphone, my brain then started telling me that I’m stupid, that I’m crazy, that I shouldn’t be doing this because I can’t cope, because I don’t deserve it, because I’m not like everyone else.

 

And, in a few days, or weeks, I will hit a new low point, and the thing that will stop me will be ‘I have to keep going, because I am going to Sydney, and I am going to this show’. And then, the dark part of my mind will go ‘but you can’t talk, and they’ll think you’re weird, and you will have to sit on the floor because it’s GA and there will be no seats, and people will point you out because you’re not the same as then, and you’ll feel like this again.’

 

I guess I’ll have to deal with that, somehow, when it happens. But if someone had decided that maybe calling out every single person who wasn’t pressed up against the barrier and trapped in a crush of moving, sweaty strangers and telling them off in an effort to badger them to join in, that part of my mind wouldn’t have anything to say. I wouldn’t have doubted myself when I first went to buy my ticket. I wouldn’t be making this post and I wouldn’t have to explain, over and over, why I didn’t enjoy the show. And, I would still be supporting local bands. As it is, well, the best thing I can do for me is if they’re on the bill, I don’t go. If I don’t know who the local support will be, I don’t go. If it’s going to be an unusually significant effort or commitment from me, I don’t go. My priority has to be to minimise harm to myself, because otherwise there’s not even a chance of getting better, however mythical that concept may be.

 

However, that is at the expense of not just that one singer, or his band, but the entire industry, because if I can’t get priority entry, if I can’t get a safe place to sit, if I can’t get through without a demeaning experience (and not just bag checks, but waiting in line for merch/drinks and being ignored for half an hour because of not being able to talk, being hit on and unable to tell people to go away, my disability being mansplained…), then I am not welcome, and I will not go. Not because I agree that it’s not the place for me, but because I have to look after myself, and that includes the only way of protecting myself from being pointed out from the stage because of my disability – not being in the situation in the first place. It’s not me that’s missing out, though, even though people would say that they don’t want people like me there anyway while claiming not to be ableist – it’s everyone who relies on ticket sales and merchandise and word of mouth for their business. If someone asks me how I enjoyed the show, I will say I didn’t. I will say why. In the bubble that isn’t the internet, where it may make a difference, I will name names.

 

And, if I don’t kill myself first, I will find something else to look forward to, to set milestones for in a last-ditch effort to survive long enough for medicine to catch up and help me pass as a sheep. A very metal, individual, sheep.

Disability and Emergencies

Imagine being stuck on the side of the road, unable to talk, in tears, and a man comes up behind you and leans over, aiming to grab your tyre iron.

That’s what happened to me today. Several times, in fact. Not all the same way, of course. But over, and over, and over again. You might not be worried – you’re a man, stronger than they are, or you are someone who can talk, and you can tell them they’re not needed and they need to leave. Today, I was neither of those. I have a relatively rare brain disorder that makes it so I can’t talk. I was presenting somewhat female, if that’s what you call a minidress and stockings. I’m tiny, small enough that off-the-rack clothes are hard to find, even in our society where thinness is a celebrated attribute.

I pulled in to a carpark, hit the edge of the driveway awkwardly and my front tyre blew out. Initially, it wasn’t a problem. Despite being sick, I can change a tyre. I have to take breaks after putting my entire body weight into loosening each nut, a break after jacking the car up, a break after lifting the tyre off, and so on. Afterwards, I’m exhausted. It takes about three days to recover, longer if in that three days I do something other than lie flat on my back and stare at the ceiling, wishing for spoons. I can do it, though, so I wasn’t worried. I’ll just change it, and I’ll still make it to speech therapy.

It was twenty minutes before I managed to loosen the nuts. I had forgotten that I had to account for wearing a corset, the only thing between being able to stand and having to drag myself along on whatever wall or rail is near enough to hold on to. In that time, not a single person offered to help, though many walked past and I had an audience made up of store staff staring out their window and the customers that came in and out. I also had people sending me messages, and as soon as I said I wasn’t available to them at the moment, I had to deal with them wanting to take over and “help”.

I was jacking the car up again, squatting on the ground, my bad knee protesting against the position by sending searing pain up my leg, when someone started talking behind me. When I didn’t answer, between being busy jacking up my car, clearly being capable of doing so, and not being able to clearly understand what was being said because this person was behind me, he came closer. Suddenly his shadow was over me, and I was cold, bereft of sun, and he was insisting on helping. I moved closer to the car, away from him, and eventually he left. I sat down in the passenger seat of my car, and burst into tears. Who expects someone to have a conversation with a stranger they can’t see? I was clearly working on the issue on my own. I’d done the hardest part on my own. By that time, he had been watching me for half an hour.

He came back out a few minutes later, when I’d pulled myself together and managed to pull the tyre halfway off. He cornered me against my car. “Are you sure you don’t need help?” he said. I signed to him. Leave me alone. “Are you deaf?” he said. Then he moved closer, so close that he didn’t even have to extend his arm if he wanted to touch me. He pointed to his mouth. “Are you sure you don’t want help? Is it a flat tyre?” I signed again, I shook my head, I tried to back away but there was nowhere else to go. He reached for my phone. “Why don’t you text me?”

Then he pointed to the tyre, and, slowly, he said “Is it broken?”.

Broken. A simple word, because he thought I wasn’t understanding him; because he wasn’t understanding me. I had prayed that someone would come out, earlier, when i was flashing my bloodstained underwear at rush hour traffic in an effort to loosen the nuts. But that was done. Clearly I was capable. Except he, being a man, older than me, bigger than me, had decided I wasn’t.

He left, and I collapsed again, barely even moving. Then he came back with someone else, a woman, my height, but leaning on his arm. “Can we call someone for you?” she said, in between his explanation to her, talking about me in the third person like I wasn’t there. “She has the tyre out, she’s taken the nuts off, she’s jacked it up.” He outlined all the steps I had taken to solve my own problem, and told her what he wanted to tell me. “You have to jack it higher. Tell her she has to jack it higher.” “I don’t know sign language,” they kept saying, every time I asked them to leave them alone, when I backed away. Eventually she leaned in. “Let me do it for you,” she said, and she was reaching for the tyre iron. In a miracle, I screamed. I kept screaming until they left, and then it cut out, my brain collapsing back into its post-stressed state where the energy it takes just to function gets funneled through the part that’s supposed to be helping me make words. I’m used to functioning in high stress, which is why my brain is how it is. They made me feel so bad my brain thought it was back to normal; this undid months of work retraining it to function at a normal, stress-free level, to where my disorder is under control.

At this point, I gave in and texted my mum. It’s her birthday. I didn’t want to interrupt her, because I should be capable of this, but I needed to let it out, the same way I managed to make a sound.

 

While I was sitting in my car, shaking and crying, only then did people keep coming up to me. I was sitting in the car, leaning to the side of the seat, my legs dangling out the side, and the door open. Inevitably they would come up beside me, trapping me because they stood between the door and the car, in my space. “Do you need help?” they kept saying. They ignored the fact that I had started repairs, and ignored the fact that I was on my phone. They wanted my attention, and when I didn’t talk back, there were several reactions. Two of them waved their hand in front of my face. It took a lot of mental energy to not respond. It didn’t even occur to me to grab their wrists and twist their arms, forcing them out of my space. I was in the middle of a conversation with my mother – “the tyre is stuck, i don’t need you to call the raa i just need these people to go away, i remembered that i have food, i don’t need to worry about my blood sugar now, i’ll be okay, can you just check with dad and make sure i did everything right” – and I did not want to be interrupted by another person who failed to respect my autonomy, failed to respect my personal space, and expected that I would be grateful for their intervention.

Inevitably, when I didn’t talk, they would walk away. Nobody actually waited long enough for my phone to load a blank word document that I could type in to tell them to leave me alone. Nobody realised that by bringing their friend over to stand next to them (because two big strong men is better more threatening than one) that they were making themselves more threatening.

The last man who asked started yelling at me when I didn’t answer him the first time. He waved his hand in front of my face.

Then, he said “fuck you, stupid fucking ungrateful bitch”.

 

That was exactly why I didn’t want anyone to help me. Entrenched in our society are a few ideas about people who present female, people with disabilities, and people with both. Included in those ideas are that we should be grateful for big men who help us when we aren’t supposed to do things for ourselves, because their insertion of themselves into our lives is an act of kindness, never mind that they assume we both need and are grateful for them. Not one of these men, not the one who came up behind me while I was bent on the ground, probably showing off my purple underwear, not the one who trapped me in my car, not the one who called me a bitch, thought that I would view them as a threat. I didn’t know any of them. I don’t like strangers touching my things. I don’t know what a big strange man would do with a tyre iron.

But it should have been clear, both by virtue of the fact that I was partway through the simple procedure of changing a tyre, and had access to a mobile device, that they were not needed. Perhaps they thought they were truly being altruistic, offering an act of charity, but the fact still remained that there was a social cue for them, being that as someone with long hair and wearing a dress, I shouldn’t have been able to perform the task myself, and it was their job to help. Perhaps it never occurred to them that by trapping me in a space where I couldn’t back away, they were acting in a manner that made them a threat. It certainly never occurred to them that they were treating me as a less than capable human being.

However, it did occur to me that any one of them may have expected something in exchange. I had my mother on the other end of the phone, and if I typed to her that something was wrong, she would have called the police and yelled at them until they sent someone, but in that amount of time I still could have been beaten, raped, and/or killed. After all, I have no way to say no. I’m dreadfully lucky that I was even able to scream.

 

The whole thing took an hour and a half longer than it needed to. Part of that was because of the way these people treated me – as ‘less than’, because of how I look and because I couldn’t tell them to get lost, because I broke down and had a panic attack and became more vulnerable – and part of that was that these incidences continued until roadside assistance arrived. If I hadn’t been interrupted in the first place, if I hadn’t been threatened and trapped and ended up going hypoglycaemic, I wouldn’t have needed to even call them. They took over an hour to arrive. In that time, the entire staff of the store whose carpark I was borrowing had taken turns watching me out the window, reporting my condition to the others. I prayed that they wouldn’t bother me when they left, and they didn’t, although two further incidents with customers and passers by had occurred. When the van finally arrived, it took two minutes for him to use a larger jack and switch the tyre, because I’d already done the hard work. He insisted on putting the old tyre in the back for me, and then he kept handing me my things. The jack, still half opened up. The tyre iron, because it was on the bonnet. I hate taking things from people. I bit my lip until it bled, because in my experience, asking him to leave me alone would be fruitless, and this was the fastest way for him to go.

 

At that point, I checked my phone again. I’d texted my mother only a few minutes before, to say that the van was finally on its way. She had a message for me – “Dad says he’s proud of you.” I don’t know why. Was he proud of me for not accepting the help of strangers whose motives I didn’t know, who approached me in ways that were actively making me uncomfortable, and who treated me like I was ‘less than’ because I didn’t act the correct way? Was he proud of me for trying first and, in realising that I had been forced into a condition where I could use help, asking for it from someone who was safe, whose entire job was to sail in, help, and leave again, without intruding on personal space, and who had a boss I could complain to if he acted in a way that was threatening? Was he proud that I’d done what my psychiatrist has been training me to do, in that I recognised I was reaching a point of extreme stress and instead of pushing it down, emphasising the way my weird brain works just to get back to functional, and instead expressed it a safe way?

Or was he proud that in trying to change the tyre, and when it got so that it wasn’t safe for me to keep trying, I called roadside assistance myself (because, wonder of wonders, they have a special line for people with speech and hearing issues), and effectively, needed none of the help these men tried to force me to accept?

 

Apart from the one who’d come out with the first man, no woman asked if I needed help. A female-presenting person walked past, talking on her phone. She did what I do, when I see someone who may be in trouble. She slowed down, made eye contact, saw I had my phone, and kept going.

 

I never made it to my appointment, though. The entire process took nearly three hours. I first thought, maybe, if I hadn’t tried to do it myself and just called first thing, that I could have gotten there, but then it occurred to me – all of these incidents occurred after I had stopped exerting visible physical effort. I would still have had to wait at least that long for someone to come, and all of those incidents would have occurred, but I wouldn’t have had the time after to eat half a muffin (supposed to be a present, oops), and I wouldn’t have stopped crying by the time roadside assistance arrived.

I kept my facebook friends updated, in part because that’s one of the ways I’m supposed to express my stress, and in part because some of them have disabilities too, and would understand. In one of the posts, I said this: “this is literally the most terrifying thing since i was raped at knifepoint”. Apart from the physical aspect of that crime against me, everything else was the same. Multiple men attempted to enforce their will over me, sure I would be grateful, sure that they were entitled, sure that it would show they were more powerful than me. That’s what it felt like, each time.

 

The point of this was to emphasise that being in a position where other people assume that you need them, where society tells you you’re not expected to be independent and you should rely on what others deem kindness, can really suck. None of these people approached me in a manner that wasn’t threatening – they invaded my personal space, they made sexual gestures, they swore at me and called me names for not responding correctly, they treated me like I wasn’t there, they talked to me like I was a child. None of this was necessary. It was scary. I’m emotionally exhausted now, for typing this out is like going through it all again. But I had to tell people – it doesn’t matter if you’re a girl, if you’re sick or small, if you’re deaf or anything that isn’t a big strong man, and even if you are a big strong man: if someone makes you feel unsafe, you don’t have to accept their help. Nobody should assume you’re incapable, or pressure you into accepting what they think of as help. That first man? He should have left me alone when I shook my head. He should have left me alone when I told him to leave me alone, and when it became clear there was nothing he could do. He shouldn’t have brought someone else back out. They shouldn’t have tried to take my tools from me. None of the other men should have waved their hands in my face, they shouldn’t have trapped me in my car, and not needing the help of a man does not make me, you, or anyone a “fucking ungrateful bitch”.