Thursday, 26 August 2010
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Incorporating Disability Into Performance
I suffer with muscle damage & weakness from having a brain virus in my early twenties. Sometimes I can hardly move at all and need to rely on wheelchairs & sticks, other times I am at least mobile in appearance though never free from pain. Having to work around this in order to engage in performance has always been a challenge. Aside from myalgia I have eight other chronic lifelong conditions which combined result in me generally feeling pretty ill!
More relevantly, I am diagnosed as being on the autistic spectrum and have associated neurological impairments - one of those being Gilles de la Tourettes syndrome or Tourettes as it's known.
Tourettes causes sudden intense muscle jerking and tics. It can also be responsible for very disinhibition and innapropriate outbursts which may or may not include hurtling abuse inappropriately at strangers, friends or anyone around. I don't usually mention Tourettes, I have a relatively good ability to keep the syndrome under control 'most' of the time or completely avoid circumstances which would aggravate it. But I've decided this article is about disability in the Arts and so I feel I have to come clean about what it means for me to be a disabled artist, what challenges it involves and how I'm trying to meet those.
What Am I Developing?
First i'm going to talk about Till Death Do Us Part because it's the performance in the pictures I've chosen for this article and they look pretty! So, basically, I see this as one of the many attempts to work out how to remain an artist in the face of continuing illness. It involves accommodating several aspects of my conditions, one of which is accommodating the sort of sudden 'jerkiness' of my movements combined with the onset of intense pain, which then causes me to 'cease' or need to stop and the second of which is the sudden 'jerkiness' of my brain some sort of apparent 'complex neurological difficulty' which means I think and speak at an ungodly speed combined with the sudden need to stop, go blank or stutter very badly. How did Death Do Us Part accommodate these needs and enable the disabled to become 'fluid' in performance?
Well, the biggest help in this instance had to be that we got to do it when we wanted... basically, we busked it. This meant I had no deadline to meet, no one to upset or let down and no subsequent poison to my or anyone else's finances. As for the intervention itself, it depended entirely on us receiving money, in other words; we wouldn't play until we were paid. This aspect may sound tricky but it seemed to fascinate a number of crowds of teenagers who wanted the next 'part', act, song or whatever they were expecting to begin and kept putting pennies and ten pences in to get more... of course, the more they put in the longer the next piece was etc, etc.
Another aspect of the performance was that I got to sit or lay down at several points and because the scene could be frozen for as long as we liked (though this was difficult with one particular group of teenagers who wanted more and more for such a long time we had to create a device to move away from them entirely) it meant basically - I got a rest! If you look at the photo you will see I have put a picture with action next to a picture with rest and the photographs are not an illusion to how effective that juxstposition was in reality!
The dialogue was also excellent for my type of brain and the moments of vile spitting of contempt were and are inseparable from performance (though I dare say at times that the 'real' Tourettes is inseparable from a performance!) so that pretty much covered that one.
Where This has Progressed From
This pilot performance is a huge progression for me from last year where I was programming for the other 12 performers but writing myself out of performances, to some degree, I will still have to do that, my level of sickness means I will always be predominantly the administrator because no amount of wheelchairs and aids can eliminate the 'sick' element of some of my conditions. What it does mean however, is that we are constantly pressing forward for inclusion of disability of any kind in the arts and what it also means is that I am in a position to be able to understand better and try to accommodate other artists working with disabilities in the Arts.
Earlier this year I'd devised an act (a clown we've only used twice so far) with Steven Wright, another member of The Word in which I used a zimmer frame as an integral part of the act, this worked well but made me feel strangely unattractive, though the zimmer was used daily in my house. I think the ability to use my own body while compromising my movements feels a lot better though I would also consider using a self-propelling wheelchair if I could finance one that was fashionable or fast enough to make it reasonable.
Where Am I Going To With This from the viewpoint of a disabled performance?
I think myself and James Howard Cofield, who was the other performer have come to some definite conclusions about this piece that were evident immediately. First of all, it should probably always have an element where it can be done when I 'feel like it', this could partly be achieved by getting a busking permit, which allowed us to busk legally for a period and whenever (although we kept to the busking legalities for our town during this performance anyway), though it can also be done during festivals etc where performances can be given in the street at will in between coffee breaks and strange stares from passers by. If we were able to get the licence in a shopping center so we can set the two character up on boxes. The boxes serve to tell the audience something is going to happen, they make it easier to put a hat down in front of and it means the audience do not necessarily expect much movement in between so we can be 'statues' in the gaps thus allowing for rests. The final thought is that we can also adapt some of this to include a chair/chairs for less able days and that somehow I might find a rich source of funding for enabling the disabled to access the arts that will get me either a very fast self-assist wheelchair or an electric one from which I can still throw myself out of occasionally muscles permitting with the effective technique of James coming to assist me up again while I whisper instructions on how best not to pull my muscles in the process.
What Does This Mean Artistically?
OK, so this piece really needs to move on but it can. We are currently working on ways to make the dialogue a little more structured, not that it will follow a storyline (which would defeat the object of allowing the random juttings) but that we have parts we sort of brainwash ourselves with that come out in a random kind of jigsaw puzzle that doesn't fit together anymore but potentially could.
What we are doing is also working to make it more a piece of live lit. Both myself and James have been working on this but more importantly, we have a new scriptwriter (or shall I say a second scriptwriter as the first one hasn't gone anywhere) who is going to work with us on developing this one project into a pastiche created from various pieces of well-known literature which will then be randomly recreated at any given moment in the performance.
We will then need places to release this beast and places to work out the logistics of how it can become sustainable. The main point is though, that even with 8 diagnoses and pretty much all the odds against you for performing, it's still possible to make something happen if your friends like you enough to help you fulfill your eccentric notions.
If was to gain some success in forwarding this piece, perhaps it could be a sort of flagstone or pioneer project not just for those facing physical challenges to working in the arts but also for those who have complex and multiple disabilities with chronic sickness - namely, those of us that would usually give up and read a book instead!
The dramatic End!
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