Journeys - Accessibility - Access to Work
This article is about making journeys as a neurodivergent artist and the types of access required and needed, and how to ask for it.
In 2013, after working as a Specialist Mentor at a University for 4 years, I was incredibly sad to need to leave but I had to…. I just wasn’t able to make the journeys in to work anymore. I would also need to leave the country. My parents lived abroad and I relied on them to either drive me to work, or they’d drop me off at the bus stop and the buses would drop me off directly outside where I would work.
The buses abroad in the country I grew up in are vastly different to the ones in the UK - not necessarily “better” but far more accessible. No one sits next to each other and so “smells” and other strong sensory features have much less negative effect on me. I still struggle to take the bus though, but I can “get through it” just about.
At work… (back in the UK)
My boss asked me if everything was okay.
I shook my head.
Perhaps, it’s also important to point out here that my boss was disabled and was blind, and I at the time with a clubfoot, chronic fatigue, chronic pain and had had an embolism just two years before affecting my breathing, and making me experience the worst vertigo, all this on top of my autistic, ADHD and dyspraxic traits.
She asked me what was wrong.
I said that I was in so much pain and getting to work was getting increasingly difficult for me. I explained that it had been easier when I was getting journeys to work via taxi as a student (I’d studied my Masters there only a year earlier and had gotten this job through my studies, my boss had also been fundamental in my getting taxi journeys when I was a student) and they’d been life saving, but here now, as an employee, I was struggling.
“Have you heard of Access to Work?” I hadn’t.
She printed off the forms to show me how claiming taxis would work and I was able to have this conversation with her and apply for Access to Work so I didn’t have to quit my job and go back home abroad.
I could access my work.
Now this article isn’t about Access to Work (although I will be writing future ones on that!). This article is about journeys. Because no one - and I really do mean it - no one understands autistic anxiety like an autistic person.
I have absolutely crippling anxiety but I am laid back.
Make sense?
So my anxiety can’t be “seen” - no one can see my being anxious or anything
But it lives under my skin
In my body
In my soul
and,
it can quite often control my entire life.
I sometimes, can’t leave the house without someone with me.
But depending on how I’m coping that day as an autistic person, I might be able to, sometimes.
Now, I’m going to be very honest in this article but only to be completely honest about my autistic barriers - because there are loads of barriers to this condition and they are life-limiting. And I’m being open and honest about them because I know people who have died or taken their life because of this crippling “untold” anxiety that exists within autism and their friends and family were none the wiser “But they were so happy” that kind of thing.
1) Some days, I can’t leave the house by myself but I really need to get to my hospital appointment.
Since having a baby, it makes going to hospital appointments even harder. I had a brilliant midwife who really advocated me throughout my pregnancy and she referred me to children’s services - now before you get all “oh god never, they’ll take your baby away!” actually children’s services have been fundamental in giving me the access support I need so I can attend my hospital appointments.
So, if you’re a neurodivergent or/and disabled mother, I’d highly recommend getting in touch with your local children’s services and they’ll support you with things like they do for me:
ie. A care worker will meet me at my home, take a taxi with me to the hospital, babysit my baby in the cafe or waiting room, whilst I have my appointment, and then support me on the journey home.
(I’ve currently moved boroughs so unfortunately it’s currently not as simple but when I lived in my old home this is how it worked!)
For those of you without babies, you can advocate to the adult social services for the same - you can ask for someone to accompany you to your hospital appointment, they don’t need to sit in your appointment unless you want them there, and then they accompany you back in a taxi. This can be either paid for by yourself, or directly by adult social services.
2) Some days, I can’t leave the house by myself but I really need to get to the art shop to see the art materials with my own eyes (internet shopping isn’t as accessible as you might think)
This is where Access to Work comes in.
For Access to Work you can ask for:
Taxis - to get you to places - they normally ask for an average cost, and depending on where you live the average taxi cost I put in is “£15.” That way, if the journey is more and other journeys are less they tend to average out to that cost.
As a self-employed artist, I go EVERYWHERE all over for meetings, and collaborations and to various shops for my art practice, or to give talks at different institutions. So some journeys might be £5 and others might be £15, sometimes they’re £25 but they usually average out to £15.
3) Identifying what it is about the journey that makes it inaccessible.
Now here is another way of making a journey by identifying where the barrier is.
Some people face barriers using taxis so might need to use a bus but might need someone to help them with directions.
Other people might need to use cabs but are fine with directions.
Before Uber existed, I had so much anxiety making the necessary phone call to book a cab - what so many people do not realise or understand - especially people who should really know better working in Disability Services - is that so many neurodivergent students struggled with what was supposed to reduce their barriers - being offered a taxi to get to university or work - but relying on making the phone calls in order to book them presented another barrier.
More barriers… just to make a journey.
Some people need to be met in the building and then taken to where they are going to avoid needing to communicate or use their voice.
All of this can be part of reducing your access barriers to be able to get somewhere.
Think about your access barriers, I have listed a few below in case anything feels like it resonates for you:
Access barriers are things that stop you from making a journey:
a) Needing to talk to the reception.
b) Directions and not knowing where to go.
c) Not being able to remember the building or street.
d) Not being able to walk far without needing to stop or pause.
e) Smells and sounds (especially on public transport)
f) Absolutely awful pain, crippling pain.
g) Not being able to communicate verbally.
h) Needing support to leave the house to check things are turned off, locked etc.
i) Needing support in the taxi to talk to the driver.
j) Too vulnerable to be making the journey alone.
k) Intrusive thoughts prevent you from leaving the house/using public transport.
L) Low income, not able to afford to use transport.
What would reduce your access barriers in order to make a journey?
a) Using a taxi instead of a bus or public transport.
b) Having a “travel-buddy” to accompany you on the journey.
c) Having someone meet you in the reception of a building and bring you up to where you need to go.
d) Have someone walk with you to the station and take the train with you.
e) Using a special vehicle.
f) Having a blue badge or a Freedom Pass.
g) Have maps created in an accessible way for you to access directions.
This article has been about making journeys and the kinds of access barriers that might prevent you from making one, and identifying what tools or support you need to make the journey.