“Am I overreacting?” I ask, as I find myself questioning the suitability of the duplex style honeymoon suite at a potential wedding venue. I can still walk up and down stairs. There’s a good chance I’ll still be able to walk up and down stairs in 18 months’ time. Is my unease at the prospect of accessing a downstairs bathroom multiple times during the night just the product of an anxious mind? Or is it a valid concern?
“I have never fallen down a flight of stairs”, says my infallible logic.
“Well you’ve fallen enough on flat ground, and it only has to happen once” comes catastrophe’s swift reply, “and on your wedding night, of all nights – how tragic”, she graciously continues.
I tell myself it’ll be absolutely fine, you’ll have no major issues, you can just crawl there and back if you have to, you don’t want to miss out on that lovely suite.
It’s becoming more and more difficult to distinguish reason from denial.
All of this ran through my mind as I absent-mindedly massaged my aching legs. Aching, twisting, frozen legs. Painful after a 30 minute show round of an otherwise accessible venue, and one test trip down and back up those aforementioned stairs. What might they feel like at the end of a long, tiring day? How functional might they be? I hit send on the email to the wedding coordinator, enquiring about alternative rooms in other parts of the hotel that might be more accessible. I use the word “accessible”, and I feel like an imposter. She already knows I have MS, but she saw me use the stairs.
And then I remember; accessibility isn’t just about what I physically can do, and physically can’t do. I might be physically able to walk up a few stairs – but it hurts. It exhausts. It weakens. Sometimes it makes me want to scream when I reach the top. Sometimes the pain in my legs keeps me up all night. That’s not why I want to be kept up all night on this particular occasion, thankyouverymuch.
Accessibility is also about making sure I can move through my life in the most comfortable and safe manner possible. But internalised ableism, the associated shame of disability, the embarrassment of having needs that deviate from the “norm” – these are the things that time and time again stop me from utilising support, or asking for what I need. There’s an undercurrent that runs through me, carrying the message that I must push through at all costs. That anything less is an over-reaction, weakness, making a fuss.
My own ignorance means I still find it hard to recognise that it’s OK to require an accessible bedroom, even if I can technically climb stairs, or hills, or walk. It’s OK to want to live in a way that minimises pain and fatigue as much as possible; in a way that mitigates the impact my symptoms have on my function, rather than increases it. It’s OK to want to prioritise having a dance or two on my wedding day, without then having to worry about getting to the toilet later that night as a result. It’s OK to need to minimise the use of my legs in some ways, in order to maximise my ability to use them in others. It’s OK if other people don’t understand why I might appear to have some form of “selective disability”, or why I need certain access requirements to be met some of the time, but not so much at others.
These things are always OK, but if there was ever an irrevocably, absolutely, more-than OK day, it would be my wedding day.
When you live with an illness like MS, life becomes a series of little choices; “if I walk to the pharmacy this morning, I’ll have to do something that doesn’t involve any physical exertion this afternoon, so that I can do X tomorrow”… (“physical exertion”, in my context, usually means standing and walking). Attending events, having a social life, doing pretty much anything – that only becomes possible when I find ways of conserving ability in any way I can. Staggering my lesser function, my lesser mobility, my lesser energy, throughout the day – rather than blowing through it by dragging increasingly heavy legs further to the ladies room instead of using the disabled facilities, or up a flight of stairs instead of taking the lift. That kind of thing.
Accessible means different things to different people, and different people require Accessible for many, many different reasons.
So when it comes to planning a wedding with an illness like MS, it becomes a series of little adaptions, tweaks here and there, squeezing out all of the possible opportunities to conserve energy and mobility. I had rather foolishly believed that planning the perfect, accessible, people-pleasing, dream wedding would be a walk in the park. Turns out it’s a walk in the park with MS (ho ho ho), and I was the one who was starting to make compromises (like, I could bum-shuffle down them, maybe? Does that sound safe after a few drinks?) I was trying to mould my body to fit plans, rather than make plans to fit my body. And that’s assuming my body is exactly the same as it is now, in eighteen months – no guarantee with a progressive illness. My fiancé’s advice was to stop. Figure out what our (my) requirements are, and take it from there.
Of course, this isn’t just about a wedding day. This about finding the confidence to admit, and accept, and state out loud, that I do need Accessible. It’s about challenging the inner voice that tells me requiring Accessible is accepting some sort of defeat. The same voice that also tells me I’m not “disabled enough”.
I think if you need to check how easy it is to walk down and up a few steps in a hotel room, you’re probably “disabled enough” to ask for a different room.