Life on the margins

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.

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About Nimue Brown

Druid, author, dreamer, folk enthusiast, parent, wife to the most amazing artist -Tom Brown. Drinker of coffee, maker of puddings. Exploring life as a Pagan, seeking good and meaningful ways to be, struggling with mental health issues and worried about many things. View all posts by Nimue Brown

8 responses to “Life on the margins

  • druishbuddhist

    Spoonies unite. (http://www.butyoudontlooksick.com/category/the-spoon-theory/) Invisible illnesses are quite possibly the most damaging of all, because the non-ill don’t have anything that they can hang on to, in order to remind them that we *ARE* ill and sometimes need more help or consideration. The result is that it is all the more isolating.

    You’re not alone.

  • witchinsuburbia

    I hear you. My two youngest children are teens, but they both have Autism and child care depends upon whether my parents or my oldest son is available. If a group event were even open to me, nights are out. Especially during the school year and when ESY is in session. I just don’t have the energy. I’m happy being solitary for the most part, but there are times when I’d really love to be part of a group. Particularly when the Sabbats come around. One of my dreams is to eventually go to Salem for the Samhain celebration and make the walk to Gallows Hill. Never gonna happen. My interactions with other Pagans is limited to blogging and Facebook, which I am grateful for. Otherwise there would be none. Too late to make a long story short, I can relate. It is VERY lonely and very isolating, especially when the desire to connect with others like ourselves is so strong. I hope things change for you and you have a beautiful and fulfilling group experience when you’re able.
    Blessings to you, sister. Be well.

  • sepultura13

    This is so true…you are definitely not alone. Gentle *hugs* to you.
    🙂

  • druidcat

    I think it’s often about respect and mutual understanding. I’ve seen and experienced this and been frustrated, but also encountered very rude people who practically demand an event be run around them or their child. Working together is the ideal, and hopefully can be understood as we notice and appreciate all our individual needs…

    • Nimue Brown

      respectful dialogue should be the way of it definitely. for me the balance is about who is looking at what is easy and convenient /tricky and inconvenient and who is talking about having no way to turn up if some effort isn’t made to include them. We all need to be willing to deal with what is tricky and inconvenient, and to really look at things that truly exclude or that make an event truly unviable. it’s easy as an organiser (and I say this having worn that hat many times) to set things up on terms that suit you without even noticing how your own ease has become the natural default.

  • lornasmithers

    These are frustrating issues. The only way around it I could see is suggesting a rotation of meeting times- weekends, week-nights @ 6pm, week-nights @8pm. Although of course, that would be confusing. Hope you get it sorted and don’t remain left out.

  • mother wintermoon

    Thank you for writing this and raising awareness of this issue. I know the challenges of invisible disability all too well. I’m so glad I followed the moonbeams to your blog. The energy here speaks to me. Sometimes it helps to just send out The Spoon Theory to those in need of enlightenment. http://invisibledisabilities.org/ is another great organization. Peace and hugs, MW

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