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> > > Allan Sutherland: Paddy Masefield Poems

Paddy: A Life

A series of 32 transcription poems by Allan Sutherland based on interviews with Paddy Masefield as part of the Edward Lear Oral History Project.

Paddy Masefield is one of the leading figures of the Disability Arts movement. He has been a key spokesperson for disabled people in the arts, and has worked tirelessly to demolish the barriers that stand in our way. Here Paddy introduces a collection of transcription poems about his life, written by Allan Sutherland

Prose undressed, becomes naked poetry
"Every one of us who comes home and switches on the radio, can instantly tell whether they are listening to a play, or an interview. For, while dramatists write in taut, articulate, comprehensible language, those of us who have worked in journalism or the media still remember the shock of seeing our first verbatim transcript and discovering that most of us in real life speak a garbled, at times nonsensical and largely unpunctuated ramble, verging on the incomprehensible, when it is read back out of context, shorn of the speaker's fleece of gestures, facial emotions, and forceful expressions of distaste or approval.

37 years after editing my first arts radio programme, this was still my embarrassed reaction on reading Allan Sutherland's faithful transcript of 8 hours archive recording of my lifetime recollections, and especially my fascination with disability arts, in the 18 years of my disability consciousness.

Even though I am a dramatist, Allan Sutherland's writing skills encompass journalism, drama, prose and poetry. So that from this daunting pool of words, he was able to detach small sections, hang them up to dry, and then let them unfold into small abstract poems. While the thoughts are mine. The art, this time is his."



Even while I was at a public school
I realised strange things
like, when you got off the train as a kid
and had to walk a mile to the school
along a dead straight road from the little railway station
to the little village where Repton School
was in Repton Village
you noticed that all the oldest boys
who would have been about 18
walked alone
and my first assumption
as a new boy at the age of 14
was that this was because of status
and school prefects walked first
and there would be whole layers of structure
and ranking
and I would be at the very bottom.
By the time I was halfway through my five years there
I realised
that the 18 year olds walked on their own
because actually
a number of them were crying.
It was the ones who felt they were going back
to a jail sentence at the age of 18
who couldn't handle their emotions
rather than the 14 year olds
who were going to be kicked around and bullied
and accepted that that was okay
and you could live with it
because that was life.  


Old School Ties

I had been at school about 3 weeks
and a very large
and frightening
prefect dug me out of my bed
sort of ten minutes after lights off time
and I had no idea where this was leading
and it led to a room where he said
"right I'm now going to beat you six times
with a slipper"

and in my ignorance I said "why?"
and he said "well, exactly because
you're asking that sort of question.
You appear not to have learnt
when to keep your mouth shut
and how to behave yourself
and I think it will do you good
if I hit you with this slipper
six times"

and I wasn't mature enough
to be angry,
there was a bit of fright
and it helped me avoid any beatings of any other sort,
probably the only child in the school
who only got beaten once.

What was interesting was that the guy
who'd beaten me,
who I perceived as you know
the ultimate coward and bully
went on to chair the Lottery good cause,
the Charity Board,
at the same time as I was a member of the Arts Board
and it was suggested that we might meet
and have a retreat together.
I sort of felt some doubts about seeing this guy
as chair of the Lottery Charity Board.
So there were limitations on charity.

Working Life

I actually lived a life
for about five years 
in which I allocated myself three hours sleep a night.
It's amazing that my work had  
any quality at all to it  
given that it was produced 
under those circumstances.  

But I found the arts 
(and the ability to have my work as a playwright 
presented by myself   as a director 
and then my work as a director, if you like, 
by the actors I was working with 
who I felt were pushing me
to continually come up with something high quality)
just totally absorbing.
What I was absorbed with was just the work
not its implication.

(I would need sabbaticals or time outs
much later in my career
to analyse
why was I doing this?
and what was the real significance
of taking theatre to young people?
and what should have been
the subjects that I should have been
using this luxury of being given access to them in schools?)

A lot of it was fairly,
not so much thoughtless,
as thought free.



My chief mistake was
that I was interviewed for
Plays and Players which was then
thought to be a significant magazine,
and the quote appeared in there
(which I undoubtedly said
and undoubtedly meant
at the time)
that I was married to my work first
and my family second
so it was no great surprise when
my first wife
left me
not long afterwards.

Full time playwright

If you're writing five plays a year,
they've got to be rubbish.
I mean
you've got to be spending
at the very minimum
six months
thinking about why, how
and then double questioning yourself
on everything when you've written it,
if you really want to be taken seriously
as a writer

and my memories of my life
are mainly around small
and rather absurd
that explain everything much more fully
than a serious paragraph.

Talking to the Board

Within three months I was battling with my board,
saying that you have to have radical change
this theatre is dying on its feet
and you need a massive intake of
an audience under the age of 25
because your average age audience is 75
and when I go to greet them in the foyer
I can tell which ones
are not going to be coming back next week

and you may have had a past reputation
but you have absolutely no future.

And my attempts to present that
in quite an efficient policy document
based on my earlier administrative experience,
ended up with the board saying
that they were sacking me
and they would like my desk emptied
by tomorrow.

Community theatre

And I worked between these times occasionally as a playwright
doing some things that were very instructional
and beginning to pull me nearer to the community

I mean I directed one of the best plays I'd co-authored
which had won the Welsh national dramatist prize in 1970
in an amateur production
staged in churches just outside Newcastle
with a crazy vicar
in terms of what he felt about churches
and so on
playing the part of John Martin
the incendiary who burnt down York Minster
in 1840
or something like that.

Who said:
the questions this play poses
are just so much more interesting
than anything I can give to my usual audience,
who know exactly what I'm going to say.
Let's do this in a dozen churches.

And that
along with the work I'd been taking into working men's clubs
was the beginning of a very strong commitment
to community arts
that never left me

and that seemed to be very relevant
that all I came to do
or wanted to struggle to do in disability
(because although I had no perceptions of disability,
I had growing perceptions of the community
as being all sorts and groups and categories of people
who were sometimes excluded from certain activities
by prejudice
by tradition
and by economics
or anything else )

so my very slow political education
was beginning to take place
so around the same time
I was occasionally asked to speak at conferences
because I was perceived
to be still a relatively young new thinker
about this new area called community arts.

So I was like a jobbing electrician
picking up work wherever I could,
and then very interestingly
having been at a conference
and being quite rude about various people.

And I have no doubt that the Arts Council were included
because I usually manage to attack them
precisely because they funded virtually everything that I was doing,
so it was extremely unwise
and not very grateful
to attack them,
but it was a regular habit.

Family life

What I took out of theatre
and what I was trying to put back into the community,
was once again totally at the expense of my private life
which was leading me around to the age of 40
and some fairly deep decisions
on two fairly screwed up marriages

a daughter who I was absolutely devoted to,
but who I now saw relatively little of
because she had chosen to grow up
with her mum in Newcastle
and not with my itinerant theatre life
where she would never have seen me.

Running in the country

So I suddenly found myself fit for the first time
since I'd been an athletics coach in Uganda at the age of 20
and took up marathon running

and discovered that what was actually wonderful
was to go off into the country
didn't matter how badly you run
how many blisters you had
how duck footed you were
how many 11 year olds overtook you

these were all really positive things
but for the first time in my life
there was space to observe
that geese had flown overhead

or that a fox had run along a tiny country road in front of me
and actually to do some thinking while you run
in a very relaxed atmosphere

people have tried to teach me
that it's very close to meditation
the running is almost the repetition of a mantra
but through the legs
which allows new thoughts to float in.


Calling in at doctors occasionally
because I did feel very odd
and being told
by the most overweight doctor I've ever met
that I needed to get out and get more fresh air and more exercise
and go for long walks, which
as I'd been a marathon runner
until this state of ill health arrived on me
and he patently had never walked more than a hundred yards
just seemed to me slightly curious.

I went downhill quite fast
and therefore with not a very clear memory of how events unfolded eventually I know that my sister in law drove over from near London
and collected me and took me back to her house
because her diagnosis was
as a retired nurse
that I'd become a total allergic
and her oldest son, my nephew
had experienced exactly the same
as had one or two other members of the family

but her son had been incarcerated

in one of the most appalling and last
of the places that were actually called asylums
and she'd been told not to visit him
because she'd been told that it would be easier for her
if she just made the break
and accepted that he would be in an asylum for the rest of his life.

And thanks to her perseverance
she actually worked out that he was a food allergic

she got him out within six months
and he's now one of the wisest people I know in middle age
on almost any subject
because of some of the experiences he's been through.

So they came and rescued me
recognising some family symptoms
and I had massive problems with food allergy
and I used to pass out two or three times a day
and I couldn't walk
and I'd lost the use of my mental faculties
in terms of not recognising who people were
or remembering anything
or being able to sort out what one did with a newspaper
all of which later on led to pointing to what I had in fairly severe form
was ME.

and the bad joke is that if you can say what ME is
you don't have it
but as I recall it is myalgic encephalitis.

It took me two years to get a diagnosis
and I went through
what so many other disabled people must have gone through
and particularly people who've had an element of illness involved.
I was told by five eminent people
who were at the very top of their profession
in different hospitals that my very elderly mother and father
were trying to take me to
that to use their language
I was mad as a hatter

was their professional definition
and as I'd worked in theatre
it was patently self inflicted
and I was trying to draw attention to myself
and I just needed a good slap around the face
to pull myself together and get back to work.

I was fascinated later on
to find that some of the very same individuals,
(because I was sometimes being seen by people
in their seventies even
and should no doubt have retired)
had actually said identical things
about multiple sclerosis
when people first became aware of that as a physical entity
twenty or twenty-five years earlier,
So it seemed extraordinary to me
that any profession
could have the arrogance and the ignorance
to have got something totally wrong
by saying that MS simply did not exist
and that if it did it was a minor women's problem
and that women should pull themselves together
and stay in the house
and not go out to work.

I was meeting prejudice on that level
I mean prejudice that was drivel
and that those same people
were now doing it again
about something at the time not greatly understood
which has largely been called in this country ME.

Since I had it in very severe form
at least I could hold onto the fact
that I was logical
and they were not

I had enjoyed being a marathon runner
I'd enjoyed the whole of my crazy confused career up to this point enormously
so any suggestion that I was trying
to skive off work
or draw attention to myself,
just made absolutely no sense
even to the very limited faculties
that I could bring to think about it.

It was very clear to me that I was very ill with something
but it wasn't whatever they were trying to describe.
Eventually I got onto a treatment
not available on the national health
to cure food allergies
which we knew were rampant in our family history,
and to this day I don't know whether
ME led to food allergies
or food allergies led to ME
or whether the two things are indeed the same
as opposed to being separate
but after about two years I began to recover some of my faculties,
in particular
the ability to think again reasonably clearly.

Sight of the Malverns

the only other disappointment
I remember clearly
was not being able to run

it had been such a childlike delight
so much like the freedom a dog expresses
by just jumping out of the car,
seeing the hill
and just running for fifteen minutes before you can get it under control

and that was when I used to experience
going to the Malverns
and going up and running for three hours
from one end to the other,
getting back into my car and going home,

and I used to cry when I saw the Malvern hills,
(which as I lived in Worcester
was quite often)
that I couldn't do that.


There was a preoccupation
for the best part of four years
in just surviving
(and that maybe is a very appropriate word
though I wouldn't have known it at the time)
the business of getting through each day
of deciding whether or not I had the energy
to dress myself
whether or not I had the energy
to cook myself a meal
as opposed to
pulling something out of a cupboard
and trying to eat it

along with the confusion of fighting for benefit
for financial survival
and any rights I might have as a long term ill person
but who hadn't got an official diagnosis
so I couldn't support any of my claims.

It took me two years to get a diagnosis as ME
and I remember
just crying for an hour afterwards
because it was like the biggest thing in my life
was to have a diagnosis

I existed
I could appear on DSS records
I could then fight the fact that they were all prejudiced
against there being any sort of benefit
for people with ME.

Support group

So from my perspective
to come into contact
with people who'd gone through that sort of experience
which immediately said to me,
this is appalling beyond anything I've met in my life
that any woman I'm being told who has ME

is being told it's a woman's problems
if it's a young woman, she's being told its because
you're just going through your first menstruation
if it's a middle aged woman, she's being told
it's the change of life,
if its an old woman she's being told

it's the problems that come with old age,
when you're a woman
when we could meet in groups of up to twenty
or sometimes thirty people,
and share our experiences,
and very often they'd be expressed in humour
as the great problems of life frequently are,
and the most common bad joke was that at night
you put the cat in the fridge
and left a pound of cheese on the door step.

It's a nice little joke
because it was true
and the nearest I got to doing it
(because I wasn't allowed to eat cheese
and didn't have a cat) was
in all seriousness
walking into a very small room in my house

that only contained a toilet and a basin
it was called the downstairs toilet room
and spending five minutes in there
going 'I'm on my way to recovery
I should be able by my mental powers
to work out why I've come into this room
so look very carefully at everything in the room

and see if that provides an answer as to why I've come here,
and why I've shut the door behind me.

no, not getting anything at all.
Okay, don't get distressed,
be aware this is a frequent occurrence.'

So I moved into the kitchen which was next door,
and discovered that I'd pissed all down my pants
even whilst in the toilet room.
What was wonderful
was to be able to say this very quietly
to a group of people of different ages
and different genders
and have them very quietly nod
or hold your hand, or give you a hug
and they would then tell you something that was far worse.

On being head-hunted

I dragged myself on sticks
because nobody had suggested to me at that time
that I would get around a lot better if I used a wheelchair,
I was still an ill person,
I had no contact with disability advice, or experienced people,

so I dragged myself with my pain and difficulty
up the small steps to the Arts Council canteen,
had lunch with Jean Bullwinkle, who said,
well, I hope I'm not going to suggest anything too quickly or too boldly
but we have recently set up a committee in the Arts Council
called the Disability Monitoring Committee,
which is comprised of disabled people,
to monitor the arts work from a disability perspective,

and I said, I follow all that, but you know Jean,
that I'm quite widely experienced in the arts,
but you mentioned the word disabled,
but I've got no experience of disability
and I'm a man who's quite ill myself,

and I gave her my medical charity model perception of myself
and although she had no great background in disability
or particular wisdom in that
she was actually wise enough to say
well the committee at the moment
has at least half a dozen extremely wise people about disability,
who seem to be national spokespeople
or people who are certainly giving the Arts Council a great deal of advice what most of them lack is deep experience in the arts.

Ill Prepared

There were occasions when I'd worry
that I was in the wrong place in the lottery board
and perhaps all my ideas of representing disabled people
actually I was letting them down
by being somebody who couldn't think clearly

except for the incredibly simple fact
that I came to realise quite early
that I was usually the most organised person at the meeting

and this was because of my concern
that I couldn't read
and that I didn't have short term memory
I'd get my papers in large print
and I'd have to read every single one of them
and colour mark it all over
and if I thought that there was anything worth saying,
actually to have written it in the margin,
realised that it didn't have enough clarity
and spending half an hour working out
exactly how I'd like to word it,
so in other words
I went through a level of preparation that other people did not.

So there was no doubt
that I was by far the best prepared
because I was the only person in the room
who really worried about my ability to prepare.

Making it happen

Actually have the opportunity
to explain back to people like brass band members, that yes,
if we were giving out five thousand pounds
so that they could refurbish the local (and no longer used) village hall,
so it was appropriate for band practice
every Friday night for the winter months of the year,
we were actually demanding that there be access to disabled people
and if that meant building ramps
where there were steps
or building new toilets
(which only existed in the pub across the road)
they didn't get the money
unless they met those criteria
And a large number of them communicated back to us
that they didn't actually understand
what this nonsense and this political correctness was about
it had nothing to do with them
and they had never had a disabled person
in a brass band
And the exciting thing was
three brass bands
(out of maybe three hundred applications that
me in)

but we already do this
we have five disabled people in the band
they form the bass section.

A Pain for David Puttnam

David Puttnam made a speech
which was reported almost verbatim in the
Guardian on the front page of Guardian 2
which was talking about his experiences
of influencing the cultural life of Britain
through the various boards and committees that he sat on
and he was talking at a lottery board
and he actually chose to go into some detail, saying

there is a guy
who I thought from the beginning was a real pain
because every little application that came in
that didn't meet his annoying standards
he said very sorry, but I must raise this
and insist that this cannot go through until it's rectified
that frankly was a pain
when you're trying to a get a job of this magnitude done.
About half way through Paddy's time on the board
I actually began to understand the difference that it was making
and what would have happened
if we hadn't insisted on that totally across the board
and it began to change my own thinking about access in film
and the fact that it's incredibly difficult
for disabled people to break into film.

It was sort of an approval rating
that he would actually want to print that he had found
not so much me,
but the person doing this job, a pain
and then he actually understood why
and it was of some value
and I wanted to say
because I'd written a letter to the Guardian saying
'thank you very much for this little praise'
actually it's not me who deserves it
it's the movement, particular individuals who are politically astute
for whom I've been a mouthpiece and in that
sense, not only have I actually enjoyed being
involved in the handing out of a billion pounds
which somebody who set out with my humble
origins and wanting to work in television would
never have thought they'd be involved in but more importantly, I had actually learnt
how to be a mouthpiece for a constituency.


By the time I got to 60
I'd also got the terminal cancer news. Okay,
if this is not a situation where you go for something
then I don't know what is. It's going to be subtle and funny
and Caroline my wife is going to design it for me.
I found out by accident off the back of a kitchen tea towel
that, used by the royal navy,
there was a flag which is one half of my tattoo
a red diamond on a white background
and the exact and only translation of this is
'I am disabled please communicate with me'
and I don't think this is an appropriate message for a ship to run up
if it's been run out of action
but I thought that the notion of ever meeting somebody in a hospital
who was able to translate that flag
would be wonderful, if unlikely,
so we then decided that the single flag would look ridiculous on an arm
so we thought we'd go for the crossed flags.
We managed to find one that was vaguely interesting
which meant 'you are running into danger'
so the two flags on my arms mean
'I am disabled please communicate with me'
and 'you are running into danger'.
It was only when we'd decided on that
that I discovered that each of these flags
also represent a letter of the alphabet
and if you read my arm
it's unfortunate that they just happen to read


I was one of those people who
once I'd perceived myself as a disabled person
was almost overjoyed by the concept
that I belonged to the family of disabled people, and that I found
the relatively few disabled people I met
(because I was a prisoner in my house so much) just an incredibly exciting gateway to knowledge and awareness
in the same way
that some students who go to university
find that in the teachers or the access to material
and my life had never had that experience
of learning and being exciting.

Elements of the illness were always with me

Elements of the illness were always with me

so I was frequently
(even in the rare events I got to attend
and the meetings being an escape)
beginning to feel ill towards the end of it
or ill at the beginning of the day
if I tried to do a three day conference
and was just aware that I was surrounded
by people who could totally read my face
and the one thing I never needed to do
was to apologise

which I kept feeling
the non-disabled world
were constantly forcing me to do.

Catching them young

There were other areas that excited me
and one of the things I only realised
later in my speech making development
that I wanted to say to people
that by becoming absolved by disability
your responding to the needs of disabled people
your righting the wrongs of history
didn't mean you had to lose your interest in every other subject

and I was still passionate about the fact that
children under the age of five
were at their peak of learning
and if we denied them all arts experience
it was very improbable
that we were suddenly going to convert them into arts appreciators
or arts makers
if we'd missed the opportunity to do it in their youth.

Where the heart is

There was one terribly small but totally crucial point
which sadly was a negative in my life
because ME the illness
imposes considerable restraints on energy levels
there was a need to be very practical and organised
and know yourself
and know that
yes you could survive a three hour meeting
as well as trying to make a contribution to it
but you could survive it without having an ME collapse
that would put me in bed for 3 to 6 months.
I really had to be aware of it
and after any meeting I was always scheduled
with as much management skill as I could
to get me on the fastest train home
and into my own bed
so I could have at least a three day recovery period
during which nothing happened
except survival.

The sad thing that I missed out on was that
I never ever went to have a cup of coffee
with any disabled people that I met under any circumstances
after the event at which I'd met them
I'd coped perfectly well in my own life
with what I call social life
and I mean not only did I not have a partner
I didn't have a group of friends that I saw at the pub
and on the one hand my friends
my social life
were my work
and I was very happy that these people I saw as role models
who at a particular moment in time
were my social life
because I admired and respected what they were doing.
I also liked the sense of humour
and being in their company
and the sense of adventure on many occasions
but it would have been really nice
to have a genuine social life with those people
and stayed on for their cabaret
the wild music
and the wild living
and what happened after dark
and I was always on my train
to be tucked up in bed
there's regret about that
it was a serious lapse in my life
that I personally was unable to do that.

Conditions of employment

We talked about very practical things
in which all artists should be paid for what they do
we talked about the absolute absurdity
of an arts funding system
which only exists
and only creates jobs
in order to fund artists
and yet in which every single member
of the arts funding system
has a security of employment
a high level of payment
proper observation of union demands
and the time to take paternity leave
or anything else that we're aspiring to
that virtually nobody as an artist has

and that just has to be as outrageous a development
as the prejudice against disabled people
but surprisingly rarely gets aired
because I think people are frightened
of attacking the arts funding system
if they're going to be dependent on them
for earning their living
and practising their art form.


I'm really sorry that my memory lets me down on this one
because I can't remember whether this was Hungary or Czechoslovakia but there was a movement
at the time of the break up of the old USSR and its colonies where west and eastern Europe met
which was very much inspired by its artists
and we all remember that a man became
president of one of the countries and he was a writer
and we're also very aware
that at that time he wanted to get back to being a writer
in one of those countries
when political movements still had to be subversive
or you risked going to prison
or having your state subsidy withdrawn as an artist
if you said something that was counter
to the perceived policies of the country.

There happened to be a very old folk tale that said something like:
nothing will change in Czechoslovakia until lemons grow on apple trees. I've probably got my country and fruit tree wrong
but that was absolutely the essence of the statement
and so, covertly and organised by artists
wherever an apple tree could be found in the country
people hung constructed lemons on it
as a sign that change was in the air
and that farm workers who were frightened of raising their voices
could see that things were actually changing
and I found that such a delightfully simple
and yet I thought I could see inspiring contribution
that artists could make to the bringing about of reforms
and an openness of thinking
that it really inspired me

Year of the Artist

The only other delightful moment
that I remember from Year of the Artist was that
as that piss up went down the river
and the artists got more and more pissed
which I was aware of because my health prevents
the consumption of alcohol
so I and my grand daughter were possibly
the only two sober people on the ship
was that as we passed the Dome
on which so much money and so much fury and so much debate had been lavished
we unanimously moved to the same side of the ship to gaze at it
nearly causing this boat to overturn
until we realised what we were doing
and as we looked at it as a collective of artists
who thought that we were mildly radical
we actually agreed that about all we could do symbolically at that moment was to gob in the direction of the dome
and so we lined up a collective artistic spit to be directed at the dome
but naturally being artists and not seafarers
we spat into the wind
so we gobbed onto ourselves
which is just one of those delightful little paradoxes that I love
about intellectual decisions.


Making speeches

I had great difficulty in writing speeches
because of my short term memory problems
and the problems with reading and writing
and even using cassette recording machines
I had difficulty in composing material to the standard I wanted
as a former professional playwright.
So each fifteen minute speech might well take
three months of writing and crafting
and this was partly to make sure
that it was logical and made sense
and each step progressed
and it was also to hone these ten steps
which were a very convenient way of getting into any speech
what I really wanted to say to that audience
whether we were going to talk about disability arts
as opposed to arts and disability
whether we were going to talk about
the crucial component of language
in other words that the people who owned the language
should be making the decisions

Speaking Out

And so becoming a disabled person
and initially wanting very much to write
I wanted to write plays and I wanted to write articles
about the experience of having ME
the incredible way in which society couldn't handle certain illnesses
and treated them in a barbaric way
and all the things that we've talked about during this chronicling
and concluded
a little sadly and ruefully
that I could no longer manage it
to the standard that would've been acceptable to me
as a former professional playwright

but because I felt I had acquired
for the first time a voice
in the sense that that voice was a voice
of a disabled person wanting to communicate
on two levels in my case
wanting to be able to communicate and share and enjoy
and even shock other disabled people
who would have a wider understanding of my voice

but also to use that voice
to speak to non disabled people
who normally did not think of disability
disability was not in their everyday experience
or language
or repertoire
and my definition of voice is that
there is a truth and clarity in your writing
that just cuts through people's prejudices
that say 'I don't want to read
something that's written by a disabled person
I'm not interested in that subject
I like political thrillers
or I like historical sex romps'

actually there's no reason
why either of those
should not be written with a disabled voice.

The heart of the matter

On a more serious level
the thing that I keep coming back to
is my whole love affair with the arts

and when I was asked occasionally
by people on long car journeys
or on train journeys:
can you explain why
you were turned on by the arts?
why would you want to starve on 20 quid a week
when you've got a degree?
surely you could be earning lots of money
and be spending time at home
with your family, and have weekends off
and foreign holidays?
things that were completely alien to me.

I would always try and describe
what art meant to me and
what art I valued and
why I stayed in it
as being something that was
always truthful
and that was always honest

Finding a voice

What turned me on about the arts was
always trying to find
the truth and the honesty
which if you found it in
much more important situations
might say things to people
who thought they had heard things before
but suddenly found they were hearing it
with a new voice.

So when I became a disabled person
the concept of being able to answer
certain questions like
how do you feel about disability?
what is it that you want to say about disability?
why are you continually reverting to the subject
and being boring about the subject
to your non disabled family members
or even to your disabled friends?

could actually become a voice
and the only outlet for my voice
as I made the decision
that I could no longer continue to playwright
was to find it in my speeches.

Chronically sick and disabled

I remember
quite early on in my learning experience
being involved on the edge of a debate
about whether an artist
whose only experience of disability was cancer
from which he believed he was recovering
whether he had any right to call himself a disabled person
and for his work to be included in an exhibition of disability art

and this was a detail that I hadn't thought out before
so this argument came to me new
but I took from it
almost on a personal level
that people who are ill
cannot be considered as disabled people
and this clearly was nonsense because
my own use of
and dependence on
wheelchair facilities and large print facilities and so on
obviously meant that I was a victim
of the social model of disability
as well as being impaired by society
on a daily basis

so I didn't need to have any hesitation about that
but there was still a reluctance
and one of the strange things
about the whole of my time as a disabled person
is that I very rarely asked another disabled person
and very few have ever asked me
a personal question about
our disability, our impairment, our health background,

it almost seemed like having a friendly relationship
with a much trusted colleague and work mate who was a woman
when I was a man
and saying things to her like
are there things about which you feel very differently as a woman?
I mean it felt it would be an irrelevant question,
although I've realised subsequently
that I wished I had asked that question
so that I would have had a better understanding of my colleagues
and the whole of their life
rather than just the professional element that I saw
but that again gave me a shyness
about being open about my own illness
and ill health
underlying my status as a disabled person

and I guess also since my illness had given
the medical profession and the public and the benefit office
so much difficulty

the number of times I wrote ME on forms
and had them rejected saying that
this is not a recognised illness.

Getting heard

I used to have all sorts of analogies and examples
from mechanical cars to running marathons
that would explain why
you actually couldn't do things
I didn't not read or write plays because I was tired
I didn't do them because I couldn't do them
in the same sense that if in my earlier life
when I was a marathon runner
I'd one day run 30 miles
which is six miles over the marathon distance
but if I had done
I very much doubt if I could have walked a step
said anything rational to a person
or gone into work the next day.

Now those would have been fact
and people could clearly have understood that
if I'd been stupid enough to run 30 miles
then that would be my body reacting

but people had difficulty understanding the language
that had been misappropriated by a cheeky press
in wanting to say yuppie disease and tired people
and you're all professional people
and you've all got degrees
and the kids are wanting to skive off school
there'd been so much bitter crap
that had really destroyed people's lives

and in a way all these different pressures
made me more and more reluctant to talk about having ME
unless I was in a very relaxed situation
with someone else who had ME.

Before I go…

One of my more memorable
and less excitingly repeated phrases
to an audience of non-disabled people
as to why they should engage themselves
with disability
was to say:

none of you is going to go home tonight
and wake up tomorrow
having changed your colour,
very few of you are going to go home tonight
and wake up tomorrow
having changed your gender
but any one of you may go home tonight
and wake up tomorrow
a disabled person

just while you're reflecting on that
let's agree
before the culmination of your life
a very large proportion of you will
just through the process of ageing
have become disabled people

just from self interest
it's worth engaging therefore
with issues of disability.

Writer Allan Sutherland is Director of Disability Arts think-tank the Edward Lear Foundation. As a performance poet, he is a long-established figure on the disability circuit. His book Disabled We Stand (1981) won awards in the UK and the US, and is still required reading on university courses. Allan is also adviser to the National Disability Arts Archive and Collection (NDACA).