A poem about tea

I think it’s become important to me,

To find someone to bring me a cup of tea.

I think I’ve been feeling it seems impossible,

I can be quite particular and somewhat incorrigible.

I don’t mean just any old cup of tea,

I mean tea served because it’s served to me.

I don’t feel like this very often at all,

Except when life’s challenges seem an order tall.

Is it fair to want someone to share the burdens of life?

But honestly I mean good times as well as strife.

Maybe I’ve been alone now for way too long,

And I’m awfully afraid I will get it terribly wrong.

Also, it seems I have issues with the want of time,

I don’t allocate any to the subject of this rhyme!

If tea is a metaphor for love and love for me,

Then I don’t drink tea very often you see,

And maybe I’ll never find the right blend for me.

Medicalised violence and the experience of being Autistic

I wrote this a while back and haven’t posted it until now. Today it’s probably apt to post. I work hard to manage sensory issues as an autistic person.

When several life stressors happen at once I cannot cope as a result. I cannot turn this experience off. It’s constant. I need help, even if you think I can manage something – stressors in succession or together is the exception. I may be able to if I haven’t had much sensory overload, but now I live in a city, that’s rare.

This is the disability some people like to tell me I don’t have because they think if I manage it I either don’t have it or are not disabled. Just because I “manage” it doesn’t mean it’s not a struggle. This is the disabling bit. The worst thing about stigma is people not believing autistic experience.

Sometimes the medical profession is guilty of this.

Some non-autistic people will be able to relate to aspects, but that doesn’t mean “everyone is a little bit autistic” because that’s simply not true (and another post entirely).

I didn’t talk about this for many years – why? Here’s some examples why:

1. Optometrists would recommend more tests. I see sound and I would struggle to describe what I see and how it manifests. Now the best description I use is “ it is like a watercolour brush with not enough colour (almost translucent but like light through a stained glass window) has been waved around people and objects”.

This can be a pleasant or horrible experience and it’s difficult to predict. It’s part of my experience of Synesthesia

https://en.m.wikipedia.org/wiki/Synesthesia

2. I have differences taste reactions to some surfaces that I come into contact with (including clothes). A lot of things give me an acrid taste in my mouth like diabetics may experience. I’ve had at least 20 tests for diabetes because I’ve mentioned this. You get a bunch of blood tests and fasting and sugar tests – all unnecessary.

3. Psychiatric responses to my hearing hyperacuity. I hear everything, all the time. But some sounds are soothing and others physically hurt. It depends on how saturated I’ve been over time and the complexity of noise. Generally though things like trains and traffic are okay – almost soothing. People noise in shopping centres and milling around in the apartment above – not pleasant at all. After a while of complex noise I start to shutdown and it can lead to a meltdown. It’s not a mental health condition that causes this, the sensory stimulus is the cause.

Meltdowns are not panic attacks, but this was the medical response. I’ve been medicated when I didn’t need it and hospitalised when I didn’t need it.

Hospital environments are sensory hell for me.

This is why we mask (or hide it or fake as some cruel people like to say). See this:

https://www.theguardian.com/society/2019/sep/13/women-better-than-men-at-disguising-autism-symptoms

Because when we talk honestly we are punished for what we experience repeatedly under the guise of “do no harm” of the medical model.

This is something I call “medicalised violence”. I am not saying the medical profession is consciously doing this. Not at all.

But treating people as the sum of their parts and not the whole has failed to detect things like synesthesia (and autism).

There’s bunches of scholars who’ve written about the medicalisation of experience (and I first learned about it at uni during a bioethics course). I won’t go to another doctor (yes, these happened) who says things like “you have anxiety you can’t be autistic” or “do you feel emotion?” or “you don’t look autistic” and recites other myths. I have no reservations about leaving a doctors office and not coming back anymore, because frankly, I’ve had more than enough of my fair share of ignorance.

Microaggressions add up to be little t trauma and spill out into big T trauma over our lifetimes. Make no mistake about it.

So, I won’t be quiet about this anymore. It’s “not playing the disability card”, it’s about accessibility and my right to exist on my terms – not the terms of someone else. Silence is not an option (and for me it literally isn’t – I’ll never really experience it, my brain can not filter noise). Social change is rarely quiet.

*note: I will defend a good doctor to the end of time. But the issues around the doctor/patient power relations are well documented and discussed.

I don’t want to be inspiration porn

I’m writing this tonight because I am absolutely desperately over the struggle to keep myself safely and accessibly housed.

7 years ago I fell apart and had a complete physical and mental breakdown, lost my business (which I sold my home to create with the profit), my savings and all of my super trying to get well.  Because I thought I could push myself beyond my health and disability issues.  Because I thought I was inspiration porn.

This last year was the first year I felt hope again. All my wage went into setting up a house again after moving to Melbourne with my own basic things (really cheaply I add) and I felt proud of myself. My own washing machine, my own couch.

I’m Autistic (level 2 needing significant support). I have pin and plates and staples in both legs that hurt like hell every day. I don’t medicate.  I should use a cane, but I don’t feel quite there yet, I want to carry on without for a bit more (I am okay about canes, but it just feels like another thing to cope with).

I have Hashimoto’s which leaves me aching all over. I have a form of secondary hypertension caused by an old brain injury that causes all manner of problems, particularly when tired and stressed.  I can have a stroke really easily if not careful.

Being in secure housing is important as a result.  I was reassured over and over my tenancy was safe, including as recently as July.  This is my 14th move in ten years, including three interstate and one overseas move. Chasing work, chasing some security again.

I spent $8000 I saved of my wage this year so I could get a service dog (including full Autism assessments that I can’t get on Medicare) and Pepper has literally saved my life this year.  Because it’s also been really hard. I look at her and what she does for me and what I do for her (she’s a rescue) and I want to keep going.

In September I put on a Melbourne Fringe show that cost me the my savings because I wanted to establish a show for featuring difference and pride. I’m exceptionally proud of it, but the cost has been too much.  An integral feature of that was livestreaming, but a bunch of shit went wrong and it was all for nothing.  Not accessible as I had planned.

I focussed on the positive and the rest of the production, but the whole point to me was ACCESSIBILITY for neuro-diverse audiences.  I did have a plan for the cost blow out if it all went wrong.  I had  a plan for the next three months, or so I thought.

And just after that financial blow I got my last loan to pay living costs eaten up by production and some vets bills.

I hate asking for help.  Because I do so much in the world and push myself to keep working and not be on a pension, to keep doing what I love that people go silent when I do ask for help.

I can’t bail myself out of the situation I am in now, I am just as exhausted as I was 7 years ago and just as unwell.

I know there are people who know me who know I help others as much as I can.  I’ve been known to give my last $50 bucks and eat noodles for a week.  I’ve done this so far this year too.

Then the landlord decides he needs to move back in and can give me only 60 days notice, literally the day after the Fringe event and I get the letter last Tuesday night a few days later.  No notice.

I now have to go through an adversarial system to even be able to say “I’m disabled, I need longer and I need help to move”.  And that kind of thing is pretty hard on this brain and body.

I start my first permanent job and first real hope for future security I’ve had in ten years on October 2.

But I am going to be scratching to try and stay housed and I hope I can perform without getting so unwell I end up in hospital.

60 days for me is, well, devastating and at the moment, incredibly difficult and although I have survived worse, including a recent sexual assault in 2018, I can’t often feel when I am breaking until I am.

I live alone so I can work.  I can’t live with others and work for longer than a few weeks.  I simply can’t handle a busy household of people and the sensory overload I experience. Not for long anyway.

People tell me how amazing I am.  Except when I need help.  Then it’s just “sorry I can’t help” or silence.

As an autistic person I don’t notice how much I am breaking until I hit the floor. Or end up like I am now, with bruised arms from a self-harming meltdown. I try my best and one strategy has been to ask for help of late.

I’m tired of a world that only sees me as inspiration porn.  I’m more than that.

I’ve been trying to get an advocate.  I am struggling to keep self-harming meltdowns at bay.  Last week I got half way to a suicide attempt and Pepper prevented that.  Pepper and her leaning into me and her gently herding me around – stopped me.

I am more than currently aware I am nothing more than inspiration porn.  That funny person in a vulva suit on stage.  Who gets up there even though it hurts her and even though, from a sensory and anxiety perspective, getting up there is hard to do.

I get up there because I like to make people laugh.  When people laugh at me I feel worthwhile.

It makes me feel alive and for a while I move beyond the pain I feel every second of every day.  That feeling, and Pepper the Greyhound keep me alive.

I am so close to recovering from 2012, but it’s been hard slog with major health issues, largely on my own, no family to share costs with.

But at the moment me, this object of inspiration porn, again needs help. Again? I hear some mutter? Yes, it’s constant this disability thing.

Some people who’ve helped before remind me what they did for me last.  Going on this example, I was thinking that I should go back to that student in the street I bought a pie and coffee for because they were upset and remind them of that.

Some people will always remind me of how they helped and how grateful I should be.  This is how we treat people with invisible disabilities, like they are complaining again.

Others just keep on helping and I am so grateful to them.  The truth is I am grateful and I do my best.  My best in the world is how I can give back. Or I help someone else.  Pay it forward.

But please stop telling me I am amazing.  If you want to help…maybe help me  write an email for me, or offer me a meal or ask to make a phone call for me. Or help me get a advocate.

Maybe just talk to me and remind me of some adventure you went on or ask me about my favourite adventure. Maybe try and make me laugh.

Maybe remind me why I should stay on this earth. I’ve got a fundraiser going and I understand people may not be able to help financially.  But there are other ways.

Don’t send me links to Lifeline or “have you tried <insert services that are so overburdened and underfunded I can’t access them>” (that’s the majority by the way).

I can guarantee I’m trying those avenues as are many trying to access disability and advocacy services in the current political environment.

Trust me, I wish I could step out of this crap meat suit (including the brain that everyone admires) and start again.  My life expectancy is way less than everyone else.  I just want to give my best shot while I can.  Fairer fucking tenancy laws would help.

I am here, but it’s only by a thread at the moment. A shiny fucking inspirational thread.