Pain Chronicles is a monthly(-ish) column from Caroline McDonagh-Darwin about coming to terms with living with a chronic illness. It will include funny stories and brutal honesty, with some thrown-in chats with her mum Shaz, and other friends too, along the way.
As I’m writing this, I’ve just got back from a weekend in Sheffield. It was my 30th birthday and my mum Shaz treated me. But it did illustrate the difficulties of travelling for two people who have sometimes conflicting access needs, and how “fully accessible” can be a myth.
Take train and tram announcements for one – necessary for blind/partially sighted passengers to know they have the right stop – they were incredibly useful to settle Shaz’s anxiety as she knew exactly where she was, but they made me, with my anxiety, jump every single time. Not to mention the auditory processing issues I have making them harder to understand.
We also had wildly different mattress firmness needs as well. She felt supported and slept like a dream on the only type of mattress typically available in budget hotels – very firm – whereas I had to make a nest out of a spare duvet so I didn’t get aching pressure points in my hip and shoulder.
It is a problem I have been aware of for a while. Have you ever had a group of autistic people together in a room, and half of them need to stim, while the other half experience sensory overload from the small, repetitive sounds often created by that stimming. Or two equally anxious people; but one needs a quiet corner to meditate, while the other needs some outside noise to calm their racing thoughts?
And that’s for the same for similar conditions – Shaz and I share quite a few diagnoses.
Anyone who has ever tried to plan a trip with someone with a vastly different condition to themselves has already completely binned off the idea of “fully accessible”.
Accessibility features such as tactile pavement (those bumps on the floor near crossings etc.) allow the visually impaired to know they’re approaching the road; but can present a tripping hazard if you’ve got a cane or hypermobile ankle joints, or all but rattle out the fillings of a wheelchair user.
Low lights might have people stumbling into things and unable to read signs, but bright lights can easily send someone into an overloaded meltdown.
The problem exists in emergency situations too – if you’re deaf or hard of hearing then some sort of visual indication may be required when an alarm is sounding; but bright or especially flashing lights could leave your friends with a migraine or trigger a seizure.
And what about when access conflicts happen within yourself?
I’m intolerant to both heat and cold, and I have been known to have both a heat and an ice pack on at the same time for optimum pain relief and temperature control. The air conditioning at my old job helped fatigue on hot days, but if my shoulder was in a cold spot then I risked it stiffening up.
The above was surprisingly common when I asked on twitter about others’ experiences.
Lissa mentions needing to elevate different parts of her body – head and feet for two different conditions – leaving her roughly banana shaped if she’s doing both. Hari says how it’s difficult to manage their hearing loss and their hyperacusis – hearing aids and ear plugs at the same time being a tricky combo. Rosie reminds us all about that eternal disability conflict – keeping busy vs. resting.
So what is the solution here? Compromises are essential in these situations, as they are often essential for conflicting needs of abled people as well. You know which of your own needs need to be prioritised when the conflict is internal, and with your friends it comes down to planning as well as possible to make things as easy as possible for everyone.
It simply isn’t possible to meet everyone’s needs all of the time, no matter how hard we try.
But we do also have to try.
Alternatives do exist to the traditional raised dot style tactile paving, including those with lines that you could easily put your wheelchair wheels in and rubber paving that feels different underfoot – but these aren’t as common (at least in places I have been).
Supermarket “autism hour” shopping times are great if you can plan to get your shopping then, but it’s not quite the same as just being able to pop in for a pint of milk whenever you like.
Increasing accessibility, in general, will help to reduce conflicts as well. Stop putting in really long ramps when you can put in a lift, and help both wheelchair users and those who are ambulatory but need step-free access at the same time. More understanding of those who need earplugs or dark glasses will mean the required sounds and lights can carry on but sensory overload avoided at least a little.
And lastly, stop saying “fully accessible” and start saying exactly what you mean. Nothing makes my heart sink as much as “fully accessible” – because whoever has said it thinks that that’s all they need to do regarding access, and it absolutely is not. End the myth, and provide for as many people as you can.
Thanks to everyone who contributed to the discussion around this column on my tweet – you can find it here and continue the conversation if you wish.
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