The Need For Written Instructions

I have one and only one overarching accessibility need. And that is the need for written instructions. My disability around my neurodiversity is mostly to do with processing and remembering information. And with following instructions. It makes me quite tired. That I constantly have to try and find ways to beg for things to be in writing. Basically. If you want me to do something. And you tell me on the call. If it’s short enough or vague enough 

That I can write it down or scribble it down

Then it will probably happen. 

But if it’s new information.

If it’s linked to something that is new. Like a new ticket. Then I don’t have a hope in hell. Unless I write it down.

It won’t happen. I will forget it. I will forget the instructions. Or worse the whole thing will get blocked. Sometimes I feel like I have to fight for people to see my accessibility requirements and challenges as real. But I know all about this. Right? Because I have spent the last half of my life having seizures. The thing about seizures is. There’s always going to be someone who comes along and says that you are faking. I’ve had it so many times. I had it by the pavilion last week. I had it at the Oxford street tube station. I had it on some random street in Brighton. And I’ve had it countless of times from the people who are meant to be trying to help me. It puzzles me. I have to remind people I am a young etc well qualified woman who could be doing so many things. Wouldn’t I rather be doing something else? On a date maybe? Pursuing a hobby? Ah but here’s the thing. People might think I want attention.

After 15 years of lying on street floors and not driving and not dating and limiting activities and social life and planning every move. I have to say. No one’s and I mean no one’s attention. 

Would come remotely close to being worth the hell I had to go through. To get here. And to get through all of this. And so. If you accuse someone who’s having a seizure of trying to get your attention

You have to think: am I really that arrogant? Would someone really put themselves through this? Just to get my attention? Am I really that special? You’re probably not

And so to come back to that other need. I don’t know what to do. Don’t know how to keep fighting. Don’t know how to find a way to say: “I need to write this down. Slowly. We need to turn this into a ticket. Or a sub task. We need to write down what I have to do. And the context for it - or else it won’t happen.” 

It’s worth noting I am usually the one doing the writing. I keep so many notes. And I can be the one writing on a call. But I need to write while the person 

Can still communicate the ask. If not then it’s just exhausting. And I am so tired of finding myself in extremely childlike and powerless places. I am 31. I am extremely strong and powerful. I am even physically strong too - and this amazes me - you should see the amount of heavy lifting and carrying I have done over the past few days to help someone out on my holiday! I am extremely capable. I just need the one thing that empowers me: clear, written instructions, written down either by me or someone else. Because I am valuable to this industry. I have huge product knowledge. I have amazing product skills

I am worth keeping. I am worth having around and I am worth valuing and rewarding and compensating correctly. I am worth it. I am a precious asset. I am worth it. Or as a mentor said: I will make a massive contribution

Anywhere I go. Learning difficulties don’t come with a manual but I come in a package. That is so rare and valuable. Of product knowledge and product skills and coding and kindness

I am extremely valuable

And I know it

A cute little pony