8pm on a Friday night. My hands are too sore for crafting or music. I’m too tired to concentrate on reading. The rest of my body is too stiff to even consider going out anywhere, and even assuming I could push through that, the flatlining of my brain makes me dreadful company. Who can I ask to spend time with me when I’m like this? And so I sit in weary silence and look at the rain, and fail to flag up even to the people I’m living with that I’m sad and sore and lonely. This is not unusual for the end of the week.
What worries me is the knowledge that I’m a pretty minor case. Most of my issues are intermittent, meaning I get good days. I get patches when I can pull my attention together enough to be sociable, and when I have enough energy to go out and do the sorts of fun things that other people do. Many people are in this sort of state full time, always in too much pain, always short of energy, always depressed and otherwise struggling to engage. All the things I can’t do much of the time because they start too late, or are too tough for other reasons… there are people who never have an option on those things. And I know how much of a fight it can be getting people to accommodate me, over things like not being able to do late meetings. ‘Normal’ wins most of the time, and the preferences of the many tend to make it seem ok not to bother with fitting me in. Rare are the places where I’m so essential that setting something up to accommodate me seems worthwhile. Again, it’s not just going to be me who experiences this.
I know when it comes to issues around depression and exhaustion that there are a lot of people who go quiet. They don’t mention there was a problem until it’s dealt with, often. There can be lots of reasons – pride and the desire to hang on to what little dignity remains, not having the energy to even start the conversation. Knowing that things probably won’t be fettled to accommodate you. I wish I knew how to step up to that, to better express that if a hand goes up I might spot the difference between waving and drowning, and I’m certainly going to try.
Physical barriers (stairs and no lifts) are not the only reasons people can find themselves excluded. It’s terribly easy to exclude anyone who does not conform to a standard of mobility (bodily mobility and car access) affluence (can you even afford to get there? Can you turn up to that place wearing the kind of clothes you own?) energy levels (because 8pm is just not a good time to start things for some people). Having young children, and not having on-demand child care can push some people out. Events that become male dominated because women don’t feel ok to turn up because they don’t feel safe in that part of town at that time of night. Places you can’t get to on public transport.
Of course it’s impossible to run everything to accommodate every possible need. But it’s nice when just now and then there’s a bit of flexibility to accommodate the known needs of people who have said they would like to turn up, but have issues. There’s a kind of tyranny in normality that means if you can’t fit with what’s on offer, and you don’t expect to be heard, you just shut up and go away and don’t get involved. Which is a lonely sort of outcome, and means that places of activity can have a very narrow selection of people involved in them.
I find it really funny when groups of people who claim to be tolerant and inclusive (and I can think of several) can’t find any flexibility at all to deal with the fact that I just can’t handle late evening meetings. I’m sure if they thought I was ‘properly’ disabled, they’d go to more effort to fit me in, but I’m just a sore, tired woman who can’t handle late nights, and somehow that makes it ok to just go ahead and have the meetings without me. Those who suffer invisibly – the mentally unwell, those in pain – are easily dismissed, because the problem isn’t visible, so the exclusion isn’t so visible, and depressed people tend not to be very good at standing up for themselves. The less obviously someone suffers, the easier it is not to bother with it, because no one can see you letting them down, and apparently that makes it ok, in some circles.