Ok, well thank you for being here today Mark.

Youre welcome.
To start with can you please me tell me a little bit about your disability or your health
issue please?
I live with MS, erm I was diagnosed with MS in 1996 so thats 19 years ago isnt it. It
affects most of my motor functions, my legs, I use a wheelchair to get around and its
affected my hands a bit and my eyesight a little bit, but as you can hear my speech
at the moment is still alright thank goodness and my mental capacity is alright so
erm... is that broad enough for now?
Perfect. So when were you born?
1970.
And whereabouts were you born?
In Nottingham.
What did your parents do for a living?
My dad worked for the MOD in a civilian capacity and my mum was, she was a stay
at home mum for the early part of my childhood then she did a bit of work for
playgroups and erm, that kind of thing working with pre-school children, that kind of
stuff, and a bit of secretarial work as well.
Do you have any brothers or sisters?
Two older brothers yes.
Cool. How much older?
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Jez is 51 and Greg is 54.

Cool, ok, erm, did you have, tell me just a little bit about your childhood and stuff like
that, how was that?
My childhood was pretty average I suppose you could say, erm.. yeah we grew up in
a suburb of Nottingham, we were a very happy family, erm my parents are intensely
religious I guess you could say, erm we were very heavily involved in the life of the
local Pentecostal Church. I was a bit of a swot at school erm, not at all sporty, very
bookish, but kind of happy with that. We moved to a town called Newark which is 20
miles from Nottingham when I was 10, my brothers had left home by then and I, I
played the piano from when I was 4 or 5 and when I was 14 due to a freak in the
school curriculum I ended up doing O level music. And to get through O level music I
had to play some classical music on the piano which I hadnt done since I was 8 or
something, so I found a local piano teacher who I just got on with like a house on fire
and because of him I ended up doing music as a career really.
Brilliant.
I learnt to play the organ, ended up coming to Cambridge to study music, I am going
off my childhood now.
No thats absolutely brilliant.
OK.
Erm, cool so music has always been really important to you.
Yeah I guess so I mean I started learning piano when I was 4 or something because
my older brother was playing and I was very competitive with him, I gave up after

doing grade 1 when I was 8 because I didnt like my piano teacher. And I found the
lessons rather annoying but I didnt stop playing but I just played by ear and stuff and
my brother Jez taught me a lot about how to do that and then, yeah when I was 14 I
started having lessons again and erm, yeah then I sort of played the organ when I
was 16 and I got this, I got this organ scholarship to come here but because I had
done playing by ear and all that kind of stuff from when I was quite young it meant I
was a bit of an all-rounder musically I suppose you could say which has made it
useful for me as a teacher now cause I can teach, I can teach the classics but I can
teach people how to improvise and stuff as well depending on what they want to do
so... But yeah music has always been important to me.
Any particular, I mean obviously classical music, any other genres or anything?
Choral, I love choral music, I love choirs, yeah conducting choirs is probably my
number one passion yeah. And I get to do that three or four times a year now. I like
certain kinds of rock music, erm its difficult to put the music I like into genres really
its just kind of particular people I suppose. Erm so for rock music I like The Beatles
and I like Radiohead erm... and then I am a big huge fan of Joni Mitchell, huge fan of
Miles Davis, love Bach, love Beethoven you know its just.. rather than particular
genres, its particular people I would say.
So erm you did O level music?
Yes I did.
Tell us how that led onto coming to Cambridge to study.
Well yeah I had to play these pieces to get to O level and I met Michael because I
was looking for this piano teacher and we just got on extremely well you know and
3

he was playing H? With his baroque orchestra and he used to take me round with
him and I would turn pages and get in free to all these concerts. Its a typical story
you hear of somebody having one significant teacher or as a mentor that kind of led
them to a career and he bought me to visit Cambridge when I was 15 and I fell in
love with the place and thought wow could I ever come here and you know
eventually I did, so yeah I did A-level music, I did my A-levels at a college in Newark
and learnt a lot about music doing that, it was a great course, covered all kinds of
bases and I learnt a lot more than just what I needed to learn to get through A-level
and erm I loved it actually. It was very lovely it was closed down about a year later,
but that was good yeah.
Were your parents very encouraging and supportive of this?
Yeah Id say they were, very encouraging and supportive, they, I mean my parents,
neither of my parents have a degree so theres a kind of gap, a generational gap if
you like between... I ended up with just one or two of my closest friends and those
who have got parents who are graduates and those whose parents arent graduates
theres a real divide in just your understanding of the world and your expectations but
they, you know, the Church was, that we grew up in was full of music, even though I
ended up doing a different kind of church music, mum and dad both played the piano
a little bit, so music was all around and they wanted me to be happy more than
anything.
What about your brothers?
Do you mean in terms of music or just....
Yeah.

Or just in general terms? Well my elder brother, the middle brother if you like, hes
the one who plays the piano still, and I learnt a lot from him and he seriously
underestimates how gifted he is as an amateur pianist, he is really quite quite good.
My eldest brother plays guitar a bit, hes not, not really a performing musician, hes
got good taste in music, both of my brothers did degrees in philosophy erm which I
ended up doing nearly so we are all kind of like arguing and debating and trying to
prove each other wrong! So and we get on very well, we are still very close the three
of us.
So when you, you say you moved to Cambridge, where did you study?
I was at Robinson College, I did 3 years there, just about scraped through a degree
at the end of that, which was still a lot of fun, I didnt work very hard, erm, but I had a
good time. And then after I graduated I did a year in Texas in the States, playing the
organ in a big bible belt church which was quite an interesting experience and so
yeah I was playing the organ and conducting, helping run the music department, yes
painful education but worthwhile experience.
Does your, does the faith you had as a child, does that extend into your adult life?
Oh god we could have another three day interview about this if you like! Erm, yeah
because Im gay it was very painful coming to terms with that growing up in a
homophobic church, so I spent quite a lot of my teens and twenties feeling very
angry about everything and erm.. I have kind of gradually gotten over that I think I
still have moments when I feel angry but I think my diagnosis with MS when I was 26
actually helped me to erm get some perspective on that and realise that just being
angry all the time was not really a good way to live you know, and now I, for the last,
10 years or so I have been a member of the Unitarian Church in Cambridge and I
5

seem to have found a spiritual home there which is quite nice. So yeah, I like going
there and I find people who are similarly ambivalent about the whole thing to me but
still curious and you know, devotional so... yes it does extend yeah.
So when, at what age were you when you came to University, or rather left
University?
I was 22 when I graduated and then I did my year in Texas and then when I was 23 I
had two years in London I was playing the piano in the pit of a theatre, a not very
prestigious theatre in the West End in case it sounds too glamorous. But I was
earning a living playing the piano yeah.
What theatre was it?
It was called the Players Theatre, just underneath the arches of Charing Cross
railway station.
Yeah I know actually.
You know it do you?
Yeah. What sort of stuff would you have been doing there.
It was music hall. Yeah. Not really my taste but it paid the bills. And I made some
good friends, I am still very good friends with my old boss there who I seriously
respect as a musician, but erm, yeah the shows just... the tunes I didnt like them
and then theyd be stuck in my head all day when I wasnt playing them at night so...
it was kind of... it was a good experience retrospectively.
Erm so you moved kind of from Nottingham to Cambridge and then to London, how
did you find London? Living there?
6

When I was in my early twenties I thought Ive got to get to London where else could
you possibly want to live in the world you know. And when Id been in London a
couple of years I couldnt wait to get out. Its a very common story I believe because
you have to be so thick skinned to live in London dont you, and rich as well, and I
was never either of those things! So erm yeah I was happy to leave London at the
end of the two years.
Whereabouts in London were you staying?
Er Holloway N7. So fairly, very near to Finsbury Park actually cause the second year
I was there I got a boyfriend who was in Cambridge actually doing a PhD so I spent
a lot of time sort of going back and forth.
So once that had finished, did you come back to Cambridge.
I was in Cambridge for a summer and then I went to Toronto in Canada. And I was
doing a Masters there, a Masters degree there and thinking I might do an academic
career actually at that point because I wasnt enjoying the performing I was doing.
And I was still very angry at God and the Church and everything else and I was
going to write this thesis about how sacred music was bankrupt and God was dead
and all this kind of stuff you know. Erm and Toronto is a very interesting place and it
was there where I was diagnosed with MS which was really the end of my first year
in Toronto that was when I got my diagnosis.
How did that diagnosis come about, what signs did you notice and stuff like that?
Well for a couple of years before, Id sort of had a bit of a wobbly gait from time to
time, erm, sometimes I needed to get to the bathroom in a bit of a hurry, erm all the
kind of typical things really but I just thought oh I need to stop smoking and start
7

exercising and I didnt think very much of it, you know? Erm.. and then I started to
get pins and needles in my hands and then real numbness in my fingers and erm....
er I thought this isnt because I havent stopped smoking this is really serious, I need
to get this investigated because I was trying to support myself through my studies,
playing the piano and playing the organ, erm it was really affecting my ability to play
so I went to a local hospital and they tested me for carpal tunnel syndrome, RSI and
that was negative and then they did some more tests, eventually it looked like it was
MS so I was 26 when that happened.
How did you find the treatment you got from the?
The health service in Canada? Appalling, appalling yeah, really just so so inhumane
and callous frankly. There was the night of it all really was erm... I used to have
trouble just being able to pee sometimes, and there was one night when I just, I just
could not pee at all and erm I tried everything I knew, this was before I was
diagnosed actually, about a week before I was diagnosed, erm, and I was just in
terrible pain, still the worst pain I have ever known and I was doubled over and being
sick and I asked Cary my partner to call for an ambulance and an ambulance came
and as I say I was doubled over in pain and being sick and I was taken to this
hospital and I had to sign something to say I was going to pay for the treatment
before I saw anybody, yeah it was pretty horrendous really and the consultant I saw
was just... I didnt really want to tell you that whole story again, Ive told it so many
times and its pretty.... he didnt treat me nicely at all, he didnt treat me like a human
being.
Why do you think that was, was that just the way it was at that point over there or
lack of funding or something?

I really dont know, I dont know if its because I was foreign or because thats the
way the service operated I just dont know.
Well come back to that later on when we talk about maybe your experiences in this
country.... so I mean you were quite happy in Toronto were you, up to that point?
In some ways yeah there was some aspects of my life in Toronto I enjoyed very
much I liked the University and the course I was doing I found that very interesting, I
was teaching classes of undergraduates and really enjoying that and Toronto as a
city, its a bit of a, they used to call it the sanctimonious icebox of the north, even
though the summers are quite hot, but people are very... I mean if you think
Londoners are a bit kind of brittle and keep themselves to themselves, Torontonians
are even more so, so Ive only made two lasting friendships from my two years there.
So in that environment, obviously I mean not being in your home country and maybe
not having family and stuff around you, it must have been have been quite difficult
getting that diagnosis, I would have thought in terms of....
Yeah it was horrible, it was awful.
How did you respond when you heard?
How did I respond? Well I wrote a lot of letters and got a wonderful wave of good
feeling from people here which was very touching and erm, so its 1996, so I sent my
first emails in 1995 but most of my correspondence with people here was done by
snail mail and I have still got a lot of letters I received then and they are very, if my
flat were to burn down they would be the first things Id save really. Very precious, so
I got a lot of help, I got wonderful wonderful support from Mum and Dad they were
brilliant. So I felt, I felt very touched by that, erm I felt terrified by the idea that erm I
9

could be, could be in a wheelchair in 5 years and then my life would be over and
there would be no meaning to anything and thats how it seemed to me at the time.
Erm... my relationship was breaking down, it probably would have broken down
anyway but a diagnosis like this doesnt help. So yeah it was a painful year.
So what did you do then?
Erm.. well I saw... this is slightly embarrassing... I saw, I was sent to a doctor a kind
of alternative medicine guru, who reckoned he could just cure me of MS and I
wanted to hear that so badly and I didnt want to hear anything else that I just kind of
did everything he told me and erm... wasnt, it wasnt all good advice I dont think. He
thought it was all pretty much psychological. The mind and the body are very
interconnected arent they I still recognise that but, I dont think it can be reduced to
that extent. Erm.... maybe if Id carried on being treated by him and had not left
Toronto and heard more of what he had to say, maybe I would see him differently
and perhaps I was trying to continue his ideas under my own steam when I got back
and thats what kind of was damaging to me but, I ended up feeling a bit guilty about
being ill, and feeling a failure for being ill, all that kind of stuff. So what did I do? So I
did that, I changed the nature of the dissertation I was writing for my masters
completely, erm... and it was quite therapeutic writing it actually, erm... I kind of, I
think I forgave a lot of people for things that I was angry about because I felt like I
didnt need to be carrying that around with me anymore, so you know some good
things came out of it as well. But yeah it was a very difficult year in some ways yeah.
So when did you come back to the UK?
21st June 1997

10

And what did you do then and where did you go?
I spent three months at home with Mum and Dad that summer, Id lost an awful lot of
weight, Id erm... because of my involvement with alternative medicines so much Id
gotten really heavily into erm... alternative diets and this kind of stuff and I developed
a minor eating disorder to be honest with you, erm... I felt that if Id eaten the wrong
thing then I had to fast or whatever and I lost a lot of weight and I was pretty
emotionally and physically exhausted by the time I got back so I just stayed with
mum and dad for 3 months and they kind of sorted me out really. Then I came back
to Cambridge because where else was I going to go, you know, I didnt want to live
in Newark where Mum and Dad lived because its a small town, so I came back here
and I got some work teaching and I found somewhere to live for a bit. Wow I didnt
realise we were going to be going through all this!
Sorry.
Its alright, its alright... erm yeah I did a little bit of supervising in the music
department and erm... yeah that was the first year then I found another place to live,
the next two places I found to live didnt work out very well, the second of those, the
guy, my landlord, who I was living with, reckoned hed caught MS from me and thats
what he believed, yeah I know its kind of unbelievable really isnt it? So thats when I
eventually got a council flat at the end of that. But that was, that was a difficult year
that was 1999/2000.
At this point, going onwards maybe from 96 to 2000 how were your symptoms?
Symptoms and stuff? Erm... in 1999 I got myself seriously over-tired. When I moved
out of my first lodgings into my second one I had a kind of big boost I suppose you

11

could say emotionally, I would sort of go out a lot and probably too much and then I
got really over-tired and I ended up having double vision and after that had a few
weeks in bed just kind of recovering, and after that I sort of walked with one stick. My
eyesight eventually corrected itself, erm but my mobility didnt. Other symptoms, erm
I was probably having more difficultty controlling my bladder, my hands were, my
hands were about the same I think, I was probably having a little bit more difficulty
controlling my bowels as well, erm, er... trying to think what else was happening, I
cant think.
What sort of treatment were you getting at this stage?
I was avoiding doctors at all costs, I was getting no treatment at all, because Id had
such a horrible time in Canada with doctors and there is a kind of powerful orthodoxy
amongst many people in alternative medicine that, that conventional medicine is the
enemy and is all wrong and erm yeah I was avoiding doctors at all costs so nothing
at all really, I was just trying to keep moving and eat healthily and that kind of stuff.
What were you doing for a living at that stage?
I was teaching, doing some teaching, the piano teaching, doing some supervising at
University and claiming some benefit. Mixture of the two, yeah.
So going on from 2000 then, what happened then?
So 2000 I spent three months living in, before I got into my council flat which again
was the solstice 21st June, 2000 I had three months before that living in the councils
temporary accommodation which is one step up from a homeless shelter really, it
was a bit rough, yeah. What was the question? What was I doing for a living? What
happened after that?
12

Yes, just quick question, were the council aware of your health issues?
Well the, somebody at the Citizens Advice Bureau had helped me a lot in terms of
getting DLA and stuff, erm... and when Neil said to me I want you to move out
because I think Ive caught MS from you, erm... I went back to Karen at the Citizens
Advice Bureau and she helped me apply for a council flat and I went right to the top
of the ladder because I was technically homeless and I had lots of medical points
because I had this diagnosis of MS so yeah they were aware I suppose and I moved
into, I moved into my flat yeah which is where I live now just up the road, Gilbert
Close, off Histon Road.
Are you happy with that?
Yeah its good actually, well Id always liked Mill Road and when I first came up here
I just thought I want to live in Cambridge whats this? But actually its worked out
quite well, Ive got brilliant neighbours actually and the partner I met in 2003 lives not
far away so... yeah we dont live together.
Would you like to talk a little bit about how you met your partner and stuff like that if
you wouldnt mind?
Yeah erm we met on the internet, erm, and erm, yeah its an interesting thing
particularly being gay and disabled and meeting someone over the internet because,
because in everyday life everybody can see you are disabled but they know you are
gay when you tell them. On the gay website, everybody knows your gay, they find
out youre disabled when you tell them. So you have, you know you have a closet
that you have to step out of online which is kind of interesting spin on things, so I
was chatting to Paul a bit and erm... I told him that I er had MS after a couple, you

13

know a few conversations I said I have MS, I use a wheelchair sometimes I walk with
a stick, I am still driving a car, Im doing this, Im doing that, and he emailed me back
he said, I remember his exact words in his message he said I do not have a problem
with your disability. Which is pretty nice clear wording, yeah, and so yeah we met up
and we went for a cup of tea at The Orchard in Grantchester, that was our first date,
I picked him up in my car and our second meeting he was coming over to see me
and that morning I felt pretty MS-y just a bit knackered and not really like doing much
and I phoned him and said Im not really sure I can do very much today I feel really
tired and you know, ah, and he said you know do you really want to see me again
are you just trying to let me down and I said no I would like to see you again its just
the way I feel. Erm... I said come over for a bit but I might need to flake out after a
couple of hours you know... erm so romantic and he turned up and he brought me
some flowers and then twelve years later the rest is history really! Cause I love being
brought flowers!
What a lovely story!
Yeah sweet isnt it.
What does Paul do for a living?
Paul has taken voluntary redundancy two years ago, he was teaching at Anglia
Ruskin University, yeah teaching accountancy erm... but he didnt working in Anglia
Business School and like many Chinese people he is scrupulously careful with
money, I mean ridiculously careful with money, he has paid off his mortgage, hes
got a decent pension so he doesnt really have to work that hard to earn a living, erm
I think he needs a little bit more to occupy him right now but hes not, you know hes
not working full-time yeah. But thats what he was doing.
14

So, at some point I presume you resumed like contact with doctors and stuff like that.
Yeah yeah I can tell you about that if you want... that was, that was 2001 erm... I
think after my period in 1999 when my eyesight went so bad and I had gotten myself
so overtired erm... I am still coming to terms with this to be honest with you, I still find
it, I still find it difficult. I got a bit, Im trying to find the right words, I got a bit, I got a bit
paranoid then about having overdone it, tired myself out and that became a bit of a
sort of self-fulfilling prophecy, not quite the right words but erm, and what happened
to me gradually through those, I mean the three months that I was in the temporary
accommodation I just felt exhausted most of the time and what I thought I didnt
understand what was happening to me really, which I think I understand painfully too
well now and with hindsight is that I was actually depressed. And you know, if youve
got MS fatigue then you have to lay down and if youve got depression then you
have to go out and they both can feel quite similar to each other and erm... trying to
tell the difference is something I am still learning to do. I do pretty well these days but
I can think of an occasion earlier this year when I mistook depression for MS fatigue
and it just happened the other way round as well and in 2001, I became really
severely depressed and, and I thought I was having an MS relapse and I was just
lying in bed just feeling absolutely exhausted and frightened about the symptoms
that were ongoing to me and erm... I went home to stay with Mum and Dad cause I
wasnt coping here and then I was taken into a rehabilitation unit near to them and
the nurses and doctors and physios were trying to get me up and doing things and
my symptoms were getting worse and worse and I was just feeling more and more
exhausted and erm... in the end I saw a psychiatrist and I was given a dose of
steroids and I was given diazepam which is kind of Valium just because I was
completely crippled for want of a better word with anxiety and it was commercial
15

medicine that then that sorted me out in that crisis and after that I decided that
maybe doctors werent all completely bad and Ive got a very good GP now and I
take fair few tablets for this and that, Im taking an anti-depressant regularly and Im
taking various things to manage MS symptoms. Ive got what they call primary
progressive MS so theres no particular medication that treats that, at least that Im
aware of thats available in this country, but I take things to manage MS symptoms.
So yeah....
So kind of going on from there from 2003 or so onwards what were you doing here
what happened to you during well from between then and now?
M: Now? Erm..... well Ive been teaching the piano, I teach in the school, I teach at
home, which I really enjoy, par for the course physically Ive been slowly becoming
more disabled I guess you could say, but emotionally and mentally better and better
able to say this touch wood [knocks twice] able to cope with it, Ive had a couple of
other physical things to deal with which have impaired me quite a lot and really are
quite frustrating cause they have hastened the decline in MS. I had a frozen shoulder
about three years ago, I couldnt bear any weight through my left shoulder, because
it was just really painful, erm and that meant I couldnt walk with my sticks and at that
time I was getting out of bed and crawling to my desk and getting myself up onto a
chair using my hands and getting into my wheelchair so I was much more
independent but when I got the frozen shoulder I started to need to be hoisted out of
bed and that wasnt MS but because of everything else, you know if youve already
got two legs that didnt work very well and then you get frozen shoulder..... so that
was a bugger. Erm... thats three years ago, maybe four years ago. 2006 I had, a lot
of people had this, there was a virus going around in the winter. And I had some kind
of post viral thing that went on for a few months, probably about 6 months after that,
16

where just everything was just exhausting, even teaching the piano which Ive
always found to be a tonic and a therapy to me I just found at the end of a piano slot
I felt just absolutely exhausted. It was kind of I suppose a bit like what people call ME
and Id always been very dismissive of ME to be honest but when I had this post viral
thing, I mean the thing about MS is for me at least, erm, I cant do things which is
really annoying but as I talk to you I feel awake, I feel fine, when I had this post viral
thing I just felt like crap, every minute of every day. It was really horrible yeah and I
suddenly had more sympathy for people with ME you know. Erm... and when I had
that erm... and I regret this, but I kind of erm learning to forgive myself, I stopped
walking with my sticks around the house and I started using my wheelchair around
the house because it was just so tiring. And .... maybe if I hadnt have done that I
would still be walking with my sticks better now but thats how it was. So those things
have had a physical impact on me. And using, losing the use of my hands, I cant
play the piano like I used to do and that is.... probably the most heart breaking thing
of it all really, I mean its not as heart breaking as the shock of the initial diagnosis
but playing the piano is just who I am and not being able to do that is very difficult,
very difficult. But Im enjoying life.
As a side thought do you get any comfort from the fact that all the people youve
taught to play are still producing music because of you?
Yes very much yeah, and yeah I love, I mean I was at school yesterday teaching and
seeing somebody just getting it, enjoying it, and you are helping yeah its a fantastic
thrill yeah and when I was playing professionally which sounds really great,
glamorous, I was playing in a pit of a West End theatre and all this, I wasnt really all
that happy. I didnt like the tunes I was playing, erm... it was a bit of a lonely life so in
some ways I think yeah wouldnt it be great if I was doing that again but actually..
17

whenever I go to London with Paul to the West End, it is really embarrassing but
whenever we go there and we wander up the streets I just always cry because I can
remember being on my feet and all the rest of it and not being very happy. And Im
there now and Im so much happier.
Absolutely brilliant. Would you like to stop for a moment?
Yeah, thanks.
[Break]
So how have you found like the NHS or the medical treatment youve got here over
the course of .....
While Ive been living here sort of thing?
Yeah.
Erm... well since Ive kind of reconnected with doctors in 2001, generally, generally
good, yeah Id say so, erm Ive got a fantastic GP, I think shes going to retire in a
couple of years so Ill miss her because shes, she really talks to you like a peer or
an equal I mean she obviously knows more about medicine but you know, she
doesnt talk down to you and she never rushes you and shes great. Neurologists are
a funny breed of people in my experience both here and in, and the doctors think so
as well, I think doctors often think neurologists are a bit out there as medics, but my
last neurologist was a really lovely guy. He certainly had people skills which a lot of
neurologists lack and I hadnt actually seen a neurologist for erm..... probably 4 or 5
years now. Erm... I think, how have I found medicine? I think the sort of medicine we
have in this country erm.... deals better with crisis than with long term medical
issues. Erm my brother found that, he, he had a serious cancer a couple of years
18

ago and you know while he was kind of fighting for his life absolutely fantastic, when
he was trying to regain his real life very little for him so I think, but I think thats
probably true of Western medicine in general, probably just not the UK. Erm... I think
the NHS is people expect too much of it. And they expect too much of doctors and
nurses and generally they are unbelievably nurses in particular I have just got so
much admiration and respect for, they just work so hard for so little and they are just
professional and compassionate almost all of the time and it just blows my mind
really. Yeah when Ive been in hospital on the odd time for, I had a blocked catheter
once, I had a, I had a seizure once, and yeah the nursing staff, and the Neurology
Clinic when Ive been there, yeah unbelievable. Yeah generally speaking its been a
good experience yeah I would say so yeah.
Have you had much contact with social services or anything for assistance?
Yeah I mean social services helped me get my flat. I am getting personal care now,
help with dressing, getting out of bed and other stuff, and social services are kind of
well funding that and organising that to some extent erm... I would be less fulsome in
my praises of social services than of the NHS I think there are some very good
individuals and some very well meaning individuals and some very hard working
ones, but there are some that are, dont meet all of those criteria. Yeah. And theres
a lot of bureaucracy and a lot of wasted time and box ticking and that can frustrate
the service users like me and people who work in the social services as well yeah,
erm, so yeah thats.. off the top the brief answer to that question yeah.
Have you had any contact with like charitable sectors or anything like that?
Yes the MS society have helped me a bit, erm... generally theyve given me a bit of
cash when Ive needed it, getting, sorting out my car, when Ive had a car a couple of
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times, they endorsed my case when I was needing a flat. To be honest with you Ive
really steered clear of the MS society as much as I can, I have steered clear of other
people with MS, a lot of... Ive steered clear of other wheelchair users a lot I suppose
its part of being in denial to some extent still about my own condition and situation,
but the MS Society theyve been, theyve been good to me yeah. And I might be
indeed dealing with the charitable sector rather more in the next year because I just
happen to wheel past Dragon Wheelchairs recently which is just up Histon Road
near to Aldi in fact, erm and they were selling me a rather super-duper wheelchair
that they might be able to supply me with which would help me a great deal but they
cost a shed load of money and they help you to tackle charities and see whether you
can get cash out of them so I might be dealing with the Musicians Benevolent Fund
and these kind of people as well but they are not specifically health orientated
charities, is that more what you meant?
Yeah thats really interesting actually. That kind of leads onto quite a difficult
question to ask...
Ok.
And its kind of how do you come to terms with the fact that, of the change in your
life, from being in your instance, able-bodied, to somebody with a disability. How do
you come to terms with that in a way it affects your daily life but also in terms of how
you mentally see yourself?
Yeah God, erm.... [sighs] I dont think, at least in my experience, I cant say Ive
come to terms with it and thats done and dusted. Erm... there were some people
from the Cambridge News, I work out at the YMCA and there are some quite a lot of
volunteer helpers there now, helping disabled users go in and users generally and
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erm... there was a big spread in the Cambridge News about us and them if you like
and a lot of photographs including one of me. In my chair with some boxing gloves
on and, I still cant get used to seeing photographs of myself in a wheelchair, dont
like them, with about one exception... I tried to, yeah you are going to want to do one
this afternoon arent you? [laughs] Generally speaking I mean I need to get help to
go the piano stool, Ill sit cross legged on the floor, I will get someone to photograph
me from the shoulders up, I dont like photographs of me in the wheelchair so yeah,
its a work in progress yeah.
The photo, I will just get your head and shoulders, thats the same for everybody.
Oh really?
Yeah. Erm...
How do I come to terms with it, yeah... I mean to some extent you know because
having MS is not like having a stroke or having a car accident or something where
its overnight change its a long slow process and so you are just, day by day you are
just coming to terms with things I suppose. I mean in terms of my relationships with
my partner and my friends and my students I think they see me more than they see
my disability which is nice.
Yep.
And I work bloody hard to make sure thats the case erm... but yeah when I see
myself in a chair in a photo, I think shit I dont look like that do I, thats not... yeah its
still difficult, but in terms of the way it affects my ability to do things erm..... I dont
know its so difficult to, its a really difficult question to answer, sometimes I just get
unbelievably you know, you know somebodys left something on the shelf in the
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fridge that I want to eat and I cant reach it because its too high up, its just so so
annoying and then maybe I havent come to terms with it very well, but a lot of the
time I can go to the gym, I can go to the cinema, I enjoy going to church, so theres a
lot of things I can still do that, you know.
Has erm your experiences, on either side of it, has the experiences of living with a
disability affected your faith, or has your faith, do you think affected your experience
of living with a disability?
Erm... yes definitely.... erm... I think having a disability, having a disability hasnt
diminished my faith at all, I think having a disability has probably, when I compare,
when I compare the state that my faith was in when I was 24 er yeah Ive got a lot
more faith now, erm... its a very different kind of faith erm... erm... Yeah go on
please.
When you say its a different kind of faith could you explain a little bit about that if you
dont mind?
Yeah no no I dont mind, well I think, I think the kind of faith that I was taught growing
up was that basically God was going to make everything alright er as long as you did
as you were told kind of thing. Thats probably a bit crude but basically you know,
and my brothers and I, my brothers neither of them are gay, neither of them are
disabled, erm just think thats a load of crap as well and I think my Mum [?], Im not
sure, my Dad died about a year ago, I think he still kind of somehow still managed to
believe that till his dying day but we couldnt really work out how, so and then yeah
when, when I turned out to be gay and how could God let this happen to me when I
was you know going to be a priest or a missionary or something and I was so so

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screwed up and bitterly angry in my twenties and then.... then I guess when, when I
had to reconsider, oh you are a bastard for making me........sorry
Do you want to stop?
No its alright when I thought about the extreme end of disability and assisted dying
erm... and I thought you know well if I end up being totally paralysed and unable to
speak and all the rest of it then yes maybe then I would want to be assisted to die
and Im thinking this in a park in Toronto and I looked around on the park, and I just
thought..... but I love life you know.... and erm.... yeah that was a turning point I think
really. Erm I gave up smoking there and then and I started to just appreciate the
divine in things I suppose you could say and my faith kind of rebuilt from there I
suppose. And what was the question again? How has disability affected my faith and
has my faith affected disability? So yeah that explains the illness. I got really
interested in Daoism at one point, Daoism is ancient Chinese spirituality if you like
and big theme in Daoism is the kind of union of concepts that seem to be opposite
so for example so much, so much healing has come out of my experience of illness
at that spiritual level and at the relationship, the level of my relationships with my
parents and that kind of thing erm... so much strength has come out of my
experience of weakness erm its a very Daoist kind of thing erm... I think I am kind of
meandering without...
No that was really really fascinating.
Has faith helped me to live with disability? Erm..... Yes if youd like to let me come
back to you on that because the answer is yes but I cant come up with something off
the top of my head.

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Do you think because basically, because your gay your experiences of disability
have been different maybe from those of a straight person?
Erm yeah Im sure they have yeah, I think erm... being a gay man erm being a les... I
cant know what its like to be a lesbian obviously... straight women and gay men
have to their market if you like, is men, straight men or gay men straight men and
gay men are more alike than either of them are like women in some respects, in my
experience, men like their partners, they judge their partners more on their looks,
more on their yeah, their appearance, they want their partners to look youthful and
healthy and in a gay mans case virile, in a straight mans case kind of I dont know
what the word would be, kind of not exactly fertile but something... women whether
they are gay or straight are more interested... they are less shallow than men... they
are more interested in personality and that kind of stuff so if you are a gay man
theres more expectation on you to kind of look good I think and using a wheelchair,
its hard to look good, will anybody ever fancy me again you know, theres the
question that most people who use wheelchairs ask themselves at some point you
know. And I do when I look at myself in photographs in which I think, God who would
fancy that you know. So thats one aspect of it erm.... er..... has being gay affected
my experience of being disabled? Erm... I dont go to, I was never really into the gay
scene, erm.... and I think if I was or if you were a gay man who was then erm after a
bit it would be quite wheelchair unfriendly you know, clubs and pubs and stuff and all
that. Erm... er.... I wish Id had more time to prepare myself for these questions! Im
sure theres got to be another answer to that, can I, I mean, its alright if I come back
to you on this certain point.

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Definitely yeah. Well just move onto a couple of last bits then. How, you have had
your condition for 19 years now, how do you think that changes in government
legislation has affected you or if youve seen any changes because of that?
Oh ok. Erm... Ive been using a wheelchair for, the first time I ever used a wheelchair
was 1999 it was just for a very short trip across the floor of Lichfield cathedral...
erm... Id been using a powered wheelchair, I stopped driving in 19... oh Im old,
2012 I think, 3 years ago, erm because of this seizure so Im getting on and off the
buses, I think, I think theres been a lot of legislation that has made life more prowheelchair users I think, I believe people have to have a ramp by law now in public
places, is that the case? I think so.
In most places yes, it depends on their, I think their heritage status.
Right ok, erm, so getting on and off the buses and all that kind of stuff I mean being
disabled 50 years ago must have been, must have been just horrendous. So I think I
cant think of any specific bits of legislation but I think the world has become much
more disabled friendly and there is Disability Discrimination Act now isnt there? So
all these things are good, I think the, I dont know if this is particularly the
government really, I think the obsession with health and safety is bloody annoying
really, yeah... erm..
Do you, I dont know if you can remember but... what do you think, or how, what
were your attitudes towards people with disabilities before you became disabled?
Erm... my mum had a good friend who used a wheelchair when I was growing up,
still, still a very good friend of my mums, erm... and a good friend at college, her
mum is a wheelchair user, erm... I didnt think about it that much you know, erm, I did

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what I see people doing to me all the time, on the street, its just oh theres a guy in a
chair and thats the beginning and the end of their evaluation, they dont notice
whether or not youve got a nice face or what youre wearing or anything and thats
why I quite like wearing hats and things because it just makes you stand out a bit, so
I think, I remember thinking when I was diagnosed with MS oh God maybe Im going
to end up in a chair, in a chair... you know and then well Ill have no life will I. So
yeah I think, I was pretty ignorant I hadnt thought it through very much, I kind of was,
I remember saying to my mum when she came to visit me in Toronto after I was
diagnosed, erm... you know those disabled people who have a fantastic attitude,
cause Id heard that, I said Im going to be one of those and she said yeah I believe
you are but again thats kind of a clich and a stereotype isnt it yeah but I dont think
my understanding went much beyond that really.
What do you think could change to make things better for people with disabilities?
Wow, erm... I think we should see more people with disabilities on the telly I think
that would be... you know, I think that would be amazing, I just... I dont watch telly
anymore really but erm... just something like Who Wants To Be A Millionaire you
know, you know to be a contestant on that youve got to walk down some stairs and
then get onto a really high chair and just about every TV appearance you know its
like that, and occasionally you see somebody using a chair on a TV show and
theyre always an object of pity or.... occasionally heroism, they are never just a
person living a life, I think that would make a tremendous difference to peoples
perception.

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That seems to be a common thing actually that there is this kind of inspirational kind
of thing that a lot of the people Ive interviewed are very uncomfortable with, erm
which I totally understand and agree with.
Yeah I think if disability could just become more.... normalized in a lot of ways its just
always kind of marginalized isnt it, yeah.
So erm.. getting really towards the end now, what do you think the future holds for
you?
For me? Ohhoo I dont know, the short answer... erm.. Im interested but nervous
about getting more involved with disability politics, erm... as something to do. I still
would much rather get involved with almost any other form of politics, erm er....
cause I am not like those other disabled people you know, Im not like them. Er... I
am nervous about losing my hands, very nervous about that, erm... I am terrified of
losing my speech, that would be just, I mean thats what the textbook says is going
to happen, erm.... I like public speaking, I like telling jokes, I like chatting, you know,
if I lose my speech that will be yeah that would be just horrendous, erm... erm....
Paul and I are now travelling more than I have done for quite a while now ... and
Paul and I are doing more and more travelling and Im enjoying that... the school
where I work are very supportive of me despite the fact that I am struggling more and
more to eat in a pleasant manner at lunchtime and demonstrate the piano to my
students and stuff, they really like the work I do, I meet with the Bursar at the start of
every term just to talk about whats going on and what the school can do to help and
stuff, Im meeting him tomorrow. So I am enjoying those things. Erm.... I keep
meaning to do some writing but I just always seems to be something more urgent to
be honest. Erm... I am going to be... Ive been invited back to my old college to

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conduct, once a term, so Im quite excited about doing that because I love doing that
and Ive been back a couple of times and they liked having me so... thats exciting.
Yeah... what does the future hold? I dunno mean.
No thats cool.... is there anything youd like to speak about or that we havent
Wheelchair users are usually portrayed as being without sexuality, and gay men are
often oversexualised gay men are just at it like rabbits and the truth in all those
cases, lies somewhere in between.. and yeah it would be nice to, again see in the
media, in the public forums is that a sign of a.. a disabled person that has a sexuality
whether it be desire or a real sex life, I mean it doesnt have to be explicit but just the
fact that physical intimacy is still possible erm... even if theres not always the other,
the movies are just, theyre just bollocks arent they, in the movies its just people just
go to bed together for the first time ever they have the best sex theyve ever had!
And disabled people are just on the extreme end of that really or the idea that a
disabled person could have a sexual life, have sexual desire, bring pleasure to
somebody else, you know... wow I mean thats just a, just a massive vacuum isnt it.
Thats an oxymoron isnt it, a massive vacuum?
I dont know. How would you go about changing that though, like portrayals again of
people with disabilities within the media?
I think that would make a big difference if you could see you know, you could see
characters in, I dont know, in films and soaps, in fiction, erm... that erm... are sexual
beings as well as everything else.
Do you think it needs to be talked about more as well?
Yeah it should be, it could hardly be talked about less could it?
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Well, thats very true.

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