With our ongoing discussion ‘Whose Social Model?’ We’re joined by composer and musician Amble, for another perspective on the social model.
Disclaimer: the views, thoughts, and opinions expressed in this text belong solely to the author. They are not necessarily shared by Unlimited.
I’ve been thinking about what to write for this article on the social model. I’m totally on board with the flipping of the script that the Social Model gives us. It’s not my body which is causing the problem, it’s the fact that the world is not designed for me. It reframes the ‘problem’ from the person to the structures we have created as a society.
Humans make things which make sense to us, if we design something, we take into account our experience in the world. The fact that some people have more power to make decisions than others, causes a skew towards a design which fits them. We could avoid a lot of inaccessibility by having a broad range of people designing things (and when I say things, I mean objects, organisations, structures, concepts, projects etc.). I don’t mean consulting, I mean actually being in charge of things, and allowing their life experience to contribute to our development as a society.
As I have M.E. I’d like to look at how time is a disabled issue. I work in the arts, and I have lost count of the amount of intensive workshops, residencies, and courses I have discounted because there simply isn’t enough time for me to complete the work. A residency which is 10 days long, with rehearsals all day, every day, and you’re supposed to edit your work in the evenings ready for the next morning is completely impossible. As someone who can manage 3 or 4 hours work on a good day, followed by a whole day recovering it’s simply ridiculous to even apply for it. (Unless of course I want to make myself a social experiment and demonstrate to them in painful terms why their residency is so inaccessible). I see the word intensive and I immediately die inside.
It’s a curious question, why do we need to work hard, long, strong, “power through” (and all those horrible macho phrases) in order to prove our worth? What has writing music got to do with having the stamina of an athlete? Why do we conflate these two ideas? Sadly it comes down to budgets. When designing projects which allow for long rest breaks our accommodation costs go through the roof, our able bodied participants are twiddling their thumbs, and the professional leaders are getting paid to sit around, or are having to turn down other work which cannot fit around this.
My experience of working with rehearsals and gigs is the same. I have to explain that no, I can’t do an 8 hour rehearsal followed by a 3 hour rehearsal then a gig the next day. Yes I will have to fly out two days early and stay in a hotel recovering before the show, and for a day after the show before I fly home. It’s expensive and complicated (sorry! I’m not in charge of this body), it’s not profitable, but that shouldn’t impact on the access to make work. Voices are being lost because we don’t adjust our scheduling.
Paced rehearsals alongside standard rehearsals with shared rehearsals at the end can be one solution. The problem is that you have to pay for a rehearsal space, conductor, equipment, travel and accommodation for an extra 2 days. But if you have money in the budget for ramps, you can put it in for time.
|AM||‘Normal A’||‘Normal B’|
|PM||Fatigue rehearsal A||Fatigue rehearsal B||All rehearsal A||All rehearsal B|
It’s the same problem with application deadlines. The problem for us fatigue people is that we’re already working flat out exhausted to pay the bills, and a 6 week deadline for us is the same as a 2 week deadline for everyone else. It takes all my work time for over 2 weeks to put an application together. I can do 2 hours of bid writing then I’m shattered until the next day. So realistically I can either write the bid, or do my other work. What seems a reasonable deadline for non fatigue people is an intense exhausting marathon for us.
Deadlines are tricky for disableds.
When we talk about disability access for fatigue conditions, the two elephants in the room are time and budget. Yes, it costs more to give us extra time. But if we insist that fatigue disabled people work to a ‘normal’ schedule we might as well be saying that wheelchair users have to climb the stairs. It’s a vital access need for us to have time to rest, to recover, to do the work to a standard we feel happy with, and not to make ourselves ill. Sometimes I don’t know how long a piece of work will take. I have no idea if I’ll have a week or two when I can’t leave my house. I don’t know and I can’t honestly tell you. I can agree to a deadline or meeting date, but only ever “health willing”.
This all comes back to my initial thought about design. If we’re designing a project, each person in the room will have different needs, they may be disabled, a parent, a person with caring responsibilities, whatever. We can’t just say “what’s standard? Let’s do it” because the same people will face the burdens time and again. Why not start with the people and design the project around them? Who are you and what do you need to flourish? Are you a blueberry who likes acidic soil? Are you a daffodil who comes out in the coldest of weather? Are you a clematis who needs something to lean against? Are you a sun loving sunflower? Maybe you’re a bog plant, up to your knees in sludgy mud? We can all flourish, all shine, all bloom if we’re given the right soil, sun and water. You can’t grow a cactus in a pond.