I have lived with a disability – a visual impairment – for my whole life. However, the more I have experienced exclusion as a disabled person, the more I see the limits of my understanding of how to include others.
At the start of last year, I was diagnosed with Chronic Fatigue Syndrome. I’m worried about putting this in the public domain because folk I might work with in the future may see it and think it means I’m less capable. Which some days admittedly I am, physically, if I’ve not been disciplined enough with rest, pacing my activities and knowing when to stop. But the more I understand my condition, the clearer the boundaries I can set, the shorter the setbacks. I’m getting better at living with it and living with it well. (I know and appreciate that I’m incredibly fortunate in this. Other people’s CFS manifests much more extremely than mine). What I need above all is understanding – which is partly why I’m writing this piece.
I have always been visually impaired but for most of my working life I worked hard to hide or minimise it in the workplace (a whole other story). I understood the physical adjustments I needed. It doesn’t hold me back and I find people are usually happy to help if I need it and ask. As well as my own lived experience of disability and exclusion, I have a well-developed working knowledge of other forms of exclusion. I’ve done a fair bit of work supporting folk and organisations to be more inclusive. But what was COMPLETELY invisible to me before my CFS was what it is like to be completely exhausted by a load of stuff that I could cope with perfectly well before. It’s a very specific experience that, while I understood it cognitively pre-CFS, I didn’t truly understand it, the intricacies of how it would manifest and how it would feel (in every sense of the word), or the very specific requirements I would have in order to function well. It’s more than just needing to use the lift rather than the stairs.
Let me tell you a story. I went to a conference late last year. The ice breaker was quite physical and noisy; I should have known to just sit it out, rather than take part, because that was a big expense of energy up front. Sometimes I do stuff that will wear me out because there’s social embarrassment in visibly refusing to participate. Sometimes I do it in the hope that it won’t have an effect on me. It was probably a mix of the two – either way, it wasn’t long before I needed to go sit in a cool, dark, silent room, which a friend – who had better-functioning legs and knowledge of the space – found for me. I needed something like that in order to keep my legs, my hands and my brain in working order. 20 minutes in there and I was good to go again. I dipped in and out a few times through the day to close my eyes and recharge. Thanks to that space, I participated in and got a lot out of the event.
Over the course of that day, to my surprise I stumbled across more and more people who needed a space like that, some because they are neurodiverse and were overstimulated, some for reasons I don’t know and it’s not my business to know, and one because they also have CFS. I told them about the existence of this cool dark silent room, and the number of us resting in silence slowly grew. As far as I know, nobody had told the organisers that it was something that would help them to participate in the day - I certainly hadn’t. I’m not placing blame on anyone here..
I have no idea what else other people in that conference would have appreciated having at their disposal in order to help them participate, that they didn’t explicitly get offered or ask for. Had I not had a friend there to help, maybe I would have ploughed on for longer without resting and just accepted that I would need to leave before the end of the day. After all, I did exactly that at a big conference earlier last year, and an event just last week.
What I have learned is this: People have all kinds of needs that you will have absolutely no sense of because it is outside of your experience. And advocating for yourself is hard and relentless, so we somehow need to make it much easier to bridge that gap.
What to do with this information? Well firstly, a friend said, having read an earlier draft of this blog, ‘people already ask others to share any adjustments they need’. My experience has been that that isn’t always true or, if it is, the questioning invites more commonly understood needs like sign language interpreters or wheelchair access. We need to normalise broader conversations about accessibility. But I think we can do better than that. Let’s stop assuming that we will all always know what we will need before we actually need it. Let’s stop assuming that inclusion is something that can only really be designed for in advance and that if someone didn’t ask for it in advance then it is their problem to manage.
Let's take an example of applying these principles. Say you're thinking about inclusion in the context of inviting people into a space, like an event...
Firstly, as some already do, account for the obvious stuff. Automatically book a space with step-free access, organise presentations to not rely on visual or hearing acuity, explore the space and think about how people will move around it etc. This accounts for the stuff that is known to everyone (or at least should be).
In advance create opportunities for people to safely and privately share what they need in order to participate, whether or not they identify with the word ‘disabled’. This accounts for the stuff that is known to them but not to you.
But also, as people uncover their needs in real time, enable them to share them discreetly and do something about it. Have a designated person who is easily contactable during the event who can coordinate solutions for people’s emerging needs. Tell everyone who they can go to to share what would help them get the most from the event. Because while you might have some ideas, there will be a LOT you don’t know, and some things they won’t be able to anticipate. It’s stuff that is both unknown to you AND to them. Such is the beauty and diversity of the ever-changing human experience.
This advice is about seeing inclusion as a moving picture - and one that nobody has full sight of at any time. And it doesn’t just apply to events – we are constantly uncovering more about what we need in order to experience a good life.
In that sense, this advice could be applied not just to inclusion for disability but to all spaces where we invite in people who experience life differently to us. Maybe there was someone out there that needed a quiet place to rest because their toddler kept them up all night Maybe there was someone out there that needed a moment quietly alone because they’re processing grief and something unexpectedly reminded them of their loss. We just don’t know what others may be experiencing in the moment, and how that changes what they need in order to have a good experience on our watch.
I now see I missed many opportunities to fully include others in the past. But, as with everything, as my experience gains more nuance, I would love to do better.
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