Accessibility

I like to write about the good bits. I like to write about the joys that autism brings me. So much of the world wants me to focus on the bad bits. They want me to look at my deficits.

No one can live like that. No one can live happily with someone pointing out all their problems.

It doesn’t mean I don’t have my frustrations and my angers, it just means I like to think about my strengths.

There are times this is easier. There are times this is harder.

I’ve been struggling with sleep this week. Combine that with a new venture – putting my face on YouTube and letting the world poke it – and you’ve got a bit of a perfect storm brewing.
That little voice inside (that I’ve kept little by not listening to it) was banging about again. Looking for the negatives. Looking for the things that are wrong with me. Trying to point and laugh.

I didn’t let it out. I kept it back. I locked the door and leaned a chair against it.

Then this evening happened. Such a positive and pointless evening.

On the back of so much lovely feedback I decided to do something new. It doesn’t feel like something new because I’ve been waiting and wanting to do it for so very long.

It’s a small thing; go along to a local poetry group, read aloud, discuss things, find new ways.

Somewhere new to go, new faces to see.

This is where accessibility comes in, I couldn’t find anything I needed online. Nobody to contact. No email. A phone call gave me a location and a “just turn up”. Nothing more.

I nearly chickened out, but not this time. I wasn’t having the voice win this time.

It’s easy to focus on the good points when you live your life optimising them.

I had a hot bath an hour beforehand. It helps me settle. I dressed in clothes of softness and warmth. I got my book of poetry. I sorted through my files on my phone. I found the pen that hurts my hand the least. I found a pencil too (just in case). Darkglasses for the sunshine. A hat for covering my ears. Tissues to play with.

And I leapt.

No one came.

It was hard finding the place. It was loud. There was a music practice going on nearby. There was chatter. The noise of a cafe. I looked at ceilings, they soothe me.

I waited outside a locked door. Early, but not too early. The time came and went. No one came. It was too warm. Fight or flight kicked in. I went and asked. Yes, definitely the right room. Still no one. I used all my techniques, but they weren’t enough.

By the time ten minutes had passed I knew I would not be able to speak even if someone came. My brain was shutting down, my reactions were ramping up.

I had my first meltdown in a very long time. I nearly made it back to the car before it started. I escaped before anyone would see what was wrong.

I am frustrated. It hasn’t fully passed yet. I am locked in this horrible place when I should be sharing something I love. The world doesn’t see this bit. My secret shame. My inability to cope with change when in a new scenario.

I so want to join in. I do.

But where are you?

Published by Rhi

34 thoughts on “Accessibility”

  1. This post makes me feel so much, Rhi, especially the “I so want to join in. I do. But where are you?” part. Know that you’re not alone, and that I’ll stand with you, dear NeuroSister. ❤❤❤

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  2. “I looked at ceilings, they soothe me.”
    Ceilings are my secret refuge too, counting all decorations, comparing symmetry, analyse colours and angles…
    A few weeks ago having a lecture to attend in an old aristocracy building, it turned out that what they advertised, wasn’t what it really was, so I had to use all my stim toys and techniques to cope. The time came when you were supposed to be next to say something… I was so angry for the wasted time and the useless noise and irrational behaviour of some attendants, that afraid to just throw in the middle my furiously justified opinion, I just said looking through the window: “There are 13+14 flowers on the left wing of the corner angle and 14+15 on the right wing, which uselessly spoil the symmetry. Also 10 light bodies aligned 3 times in lines across the ceiling…”
    And about poetry, tried the same in West Midlands, online information outdated ages ago, the location has been under refurbishment at the time, phone call, yeah sure, we’ll call you when ready, no one ever called…
    I’m sorry we have to live the same frustrating synchronicity of “no one’s ever there…”
    Take care Rhi 💐 here are some flowers for you, to maybe lighten your evening 💐💐💐
    Moshe 👾

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    1. Thanks Moshe,

      You have definitely cheered me.

      Ceilings are great. I particularly like pleasing shadows, and spaces where old is haphazardly combined with new.

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          1. Yay, painkillers, yum-yum 😵🤢
            Same here, add a course of antibiotics prescribed today, as I woke up at 4am with something similar to an asthma attack, which turned out to be a chest congestion…
            So, rest well 🌙🌙🌙🌜🌜🌜⭐⭐⭐

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  3. That really sux that this happened to you. You’ve had a big couple of weeks, posting your videos and getting so much feedback. Be gentle with yourself – you’ve accomplished a great deal, including providing words to so many of us who need to hear them.

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    1. Thank you. It’s always hard when you give it a go, and it doesn’t work out. Tomorrow I will be tired, and I won’t have the ‘good experience’ to balance that you. But tomorrow is another day.

      As always, thank you for your support. It makes the world a better place.

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  4. I find your writing refreshing Rhi, it really reasonates with me. I find keeping existing things challenging so I admire your bravery in trying something new. I’m sorry it didn’t work out this time.

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  6. That was a very daring thing to do, going out like that with minimal information, meeting new people etc. It would have taken me a very big kick up my backside to do that kind of thing. And then when it goes wrong, what would go through my mind is “did I get the date wrong? or the time? or the place? or are they all sitting inside already while I stupidly wait outside for them to turn up? am I supposed to be at the back door? are they all horribly late? what did I do wrong this time?” and so on. So kudos to you for giving it a go. And kudos for writing about it so clearly. I hope you had a good rest and feel better.

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    1. Yup, all those questions. What did I get wrong? How did I mess it up?

      They were probably just late. Probably arty types with no value for time 😄

      I am not beating myself up for not being able to wait longer. I couldn’t. I wouldn’t have been able to join in. I wouldn’t have been able to speak.

      I know people find it strange the idea that last night I could write, but not speak, but it’s true.

      I’m going to see it as a step forwards. Not a step back. I am finally willing to do this thing. I am ready. Now all I have to do is find somewhere that suits me best.

      Thank you. You have all lifted me so much

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  7. I’d like to clarify the like to say that it’s a like for/admiration huge bravery there. I was getting palpitations at the bit where you couldn’t find more information! I can take forewarned is for-armed to extreme levels. I hope you are managing tea and rest.

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    1. Rest is all I can manage today 🙂 tea and paracetamol. Thank you 😊

      Sometimes you just have to go for it. Sometimes it doesn’t pay off. There will be a next time, but I’m going to find something more suited to me.

      Had I had more information I would have been able to wait for longer. Which made it inaccessible no matter how much I wanted it.

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  8. I once drove about 20 miles to go on a guided walk then couldn’t get out of the car, sat and palpitated for twenty minutes, then drove home. 🙂 I wish you fortitude for your next go. 🙂

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      1. It occurred to me this morning that I should tell you that the next time I attempted joining a walking group I did actually manage to both turn up *and* go on the walk, and that led to several very happy years of walking, new friends (REAL LIFE FRIEND PEOPLE), an obsession with bagging Munros, meeting my boyfriend and climbing lessons (my current passion). So, you know. It did work out eventually. 🙂

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  9. Oh Rhi I hope you’re feeling ok now – your beautiful work – they are the ones who missed out, and there will be a next time. I so feel for you. Not strange at all being able to write but not speak, know it well. And lack of info – experienced similar recently, (before an autism related event) not enough info, not even the name/number of the building, just the room?! and postcode.

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  10. I am so sorry you experienced this. I have been in similar situations. It takes so much to actually get ready and go out and then to have it get messed up, I can understand the horribleness of that. Thank you for having the guts to write about it and help people understand.

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