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!

Surely god put us in this limited body to quash the brilliant mind? Where else do you expect this power to go? We are great thinkers, our imaginations are limitless but our bodies are not. Have you ever been at a meeting with a great mind, or perhaps you are one yourself? At climax point, when the ideas are in flow, the mind reaches crisis point, the ideas get stopped in their tracks, the minds must recuperate or stop. We say this is ok because we have a limited attention span. Why are we limited?! We accept this as normal but do we really think about it? It is our human bodies that limit us, they can even die and cause our brains to shut down. What a terrible state of affairs, to simply accept this all as fact, and yet, if we were describing this as the limitations within a computer or other storage system, we would address the problem immediately.

Great minds like Einstein's are lost to us through his physical death. Other minds, like Steven Hawkins are prolonged long beyond their reasonable limit because we wish to preserve them. The body in this context is useless. If you could disassociate your body from your mind, would you? I know I would. It is not just for the desire if not wanting to face death but also for the purpose of increasing productivity. I think there are some minds that feel heavily burdened by those functions which it would be so beneficial to make optional: eating, drinking, socializing, pro-creation, perhaps even washing. I know that some people enjoy these things as activities within themselves but wouldn't it be great if society got to the stage where if you had super purposeful brain function then you could opt out from such things and just become a brain that could be wired into a bigger system from which your thoughts could be read and acted on.

I guess it's a bit Star Trekish to imagine such things but I guess as children we laughed at the little mobile video phones they had in those programmers and now - they are here.

I suppose the only really tricky and potentially unethical bit about choosing super-brains for post mortal survival would be who got to decide which brains were preserved and why? I guess the other important factor would be making sure that the super brains had chosen that option and still continued to do so during their preservation!

Probably my gut instincts know that in reality if brain preservation did exist that man's complete lack of humility and obsession with self-preservation and power would only result in the same power hungry idiots that run the world now trying to find a way to continue their evil reign. More time for such morally defunct minds to stew in evil without distraction would create disaster! The world would be an even more horrid place.


This all sounds like the outline for a great story but its actually a reflection of my own desires. I've lived with daily pain and physical exhaustion since having a brain virus at 21. The body to me feels like a trial, some kind of cruel joke from God. The flip side is that my own physical incapacity makes me ever aware of how beautiful the functioning of the brain are and how vital it is that we use every part of it to our fullest capacity.

I do at times wonder though if the human body is Gods way of limiting our power and reminding us of his own!

Or, the Lorraine Kashdan-Lougher charity fund must come to an end!

It suprises me how there is always an eloquent argument that goes with laziness.  If the intellectual effort that went into creating such lines of reasoning was actually channeled into creating active solutions - my god what a productive world the planet would suddendly become!

For the last 5 years that I've been living in Canterbury I seem to have developed an uncharecteristic tendency to have created my own home-grown charity aid.  Although intending to create a completely reclusive lifestyle for me and my children I have instead run my own homeless shelter, mental health support group, youth mentoring service and of course soup kitchen.  I'm learning, as time, money and patience are running out so is my ability to abide being relatively nice!

Actually, I'm not even relatively nice! I'm a grumpy, snapping, angry turtle who shows little interest in anyone and I don't quite get it! As I'm gradually learning not to abide so apathetically the useless, the homeless and the addicted I am actually starting to question some of the acusations that are thrown at me when I have shown anything less than absolute enthusiasm for rinsing out my resources on such ones. I'm actually starting to ask - What's wrong with looking after your own?

When I am able to focus my attentions on my family for one moment and create some relief for myself from having my house constantly filled with so-called 'friends', who actually want a meal and possibly shelter but have no interest in my well being, I am acussed of being selfish, sometimes, I am even accussed of "looking after my own"! Some one once said 'charity begins at home', the saying is often attributed to the Bible but having read the Bible several times I have never come across it, the statement in itself is true enough though and i'm starting to learn it the hard way!

I sat and thought today.  I'm such a busy person that I had to use the excuse of having a bath as a time to think and when I thought I tried to imagine what perspective my children were currently having of their childhood and where I could improve it.  Then, I tried to imagine a perfect childhood, oddly enough, the imagination I had was a childhood where interest was shown in your every progression and thought, were your projects were encouraged and enabled, where you felt constantly loved and show affection and where you were given room to grow without being stiffled.  To my suprise the feelings this produced in me were ones of confidence and the sensation that I (as this immaginary child) could do or achieve anything I wanted.  Oddly enough this same childhood also involved a sense that I could move away gradually from my parents into complete independence.  After the dream I realised that my children's reality was close enough to make this kind of experience our own and I felt good about that possibility.

Later on the same day, I was sitting looking at the trees outside and trying to bridge the gap between the hope and the manifestation of this as a reality, suddenly I was reminded of the last time I had tried to create such a close and consistent home environment and I was shocked to remember; a shouting, angry face close up to mine telling me that it was somehow wrong that I was intending to look after my own family more.  The person in question had had well over a years worth of free meals, sofa sleeps and a considerable amount of money that I could well do with now. A similar incident happened to me recently when I was accussed of being selfish because I only looked after myself and my children.  It's obvious what demon lies behind such statements, I can see him poking his self-satisfied grin out from behind my computer as  I write this now.  It's hard to imagine how one comes under the influence of such a demon and I imagine that the story differs from person to person but it's hard to understand how they continue to respect themselves and why their intellectual capacity to twist other people's well intented minds into fullfilling their own needs are not better of used in some other less demeaning capacity.

Of course, non of us are perfect.  The fact that I have in the past been a fool to such devices means that I am myself at fault and need very much to learn about boundaries and build up my own self-respect and create a more discerning mind towards judge of character.  There is of course the exception to the rule.  I myself am the grateful recipient of much love, encouragement and physical gifts at times where these were integral to my continuance and growth and survival and I used these at times where there was nothing else available to make myself strong, I bet there is a story or two where a misunderstanding of how much I needed that help at that time has lead to me being in some's bad books!  I think I've done those people who helped me proud however, whether they are still around to see it and I hope the same is true of all the tag-on, waifs and strays that I've been knocking around with in past years.

I guess, ultimately, all any of us want or ever wanted was that comfortable, warm childhood I described earlier, few of us ever had it.  When we allow ourselves to rely on others and when we are able to give to others it does create a greater community and sometimes gives back to those who have missed a vital growth point something they can build on.  Life however, with a better childhood means children who grown up to be more competent adults.  Some people believe it's time for the indigo children to be given knowledge because they are our future.  So, In conclusion I guess it got to back to dustbin scrapping for those who don't manage to move on and I'm looking after me - an "my own" (for now at least)!