I was lucky to grow up in a
family where sickness and disability were just part of life. I don’t mean lucky
in that bollocky way where non-disabled people look at the disabled and say ‘I’m
so glad you exist, in order for me to stop sweating the small stuff and appreciate
my comparably fruitful life’. I mean it was so part of everyday life that it
seemed normal; it seemed normal because
it is normal. In reality there is no polarisation between disabled people and ‘normals’,
we’re all just on one big long continuum. Also, I am aware that there is a big
debate on the semantics of this, but I cannot be bothered to get into a long
discussion on the merits of ‘people with disabilities’ over ‘disabled people’.
My uncle was just my uncle – the fact that he walked with a stick because of a
severe spinal injury was just part of who he was. One of my aunties has severe
epilepsy and can go into a fit in the most unfortunate places – when standing
on a glass table, in the front seat of the car and most memorably when in
labour with my cousin. The ensuing panic over whether she had the right baby
caused by her completely blanking out the whole labour and also because my
cousin had a distinctly blue tinge because he was deprived of oxygen. This was
pre-Avatar, so blue people were even more startling.
In a large family, such as we
had, the law of averages would dictate that some of us were either sick or
impaired in some way. When I was 12 one of my cousins developed leukaemia and
died at the age of 19. This was a huge shock to me at the time, but still
seemed like part of life in all its rollercoaster glory. When I was eventually
diagnosed with MS all of this experience probably stood me in good stead. I did
a little of the ‘why-me’ soul searching, but even at the age of 21 I knew that
sometimes shit just happens to people. People like you and me, good people, bad
people, tall, thin, short and fat people – sometimes shit will happen to all of
them. Life is random and chaotic that way, it does not discriminate and nor
does it persecute; it just is what it is.
School was segregated when I was
younger. In the seventies and eighties the special school reigned supreme and
during my education at primary and secondary school I never remember sharing a
classroom with anyone who could be described as disabled. It wasn’t until my
sixth form days of the 1990s that I had my disabled consciousness awakened by
my friend K. K joined us from another secondary and was the only visibly
disabled person in the whole school. K had cerebral palsy, in the days before
it became the trendier CP, although sometimes, if asked, she would say ‘I’m a
spastic’ in reclamation of the term just abandoned by Scope. That would shut
people up fairly quickly. K walked with a three wheeled walking frame that had
a great little basket for carrying books, treats and all the essential stuff. I
don’t think I fully took on board how hard school must have been for K until
years later when I had my own mobility difficulties. The to-ing and fro-ing
from one classroom to another, sometimes right across campus was always a
struggle. K was known in the yearbook as the girl who finally got our
headmaster to spend some money so she could have ramped access to the main
buildings. There were times it must have been hard to sit in the sixth form
block all through dinner watching people flit in and out to shops and sometimes
all the way into town to chat up unsuitable boys and surreptitiously eat chips
while trying to hide from our deputy headmistress who thought eating in the
street tantamount to Satan worship. I think I treated her sometimes like a
permanent fixture we all revolved round like satellites – I moaned at her about
men, shared celebrity magazines and books, and generally treated her like an
unpaid agony aunt. The sheer tedium of listening to my constant ‘on again off
again, are we friends or lovers’ relationship with one particular sixth former
can only be imagined. It is incredible how self-absorbed you can be when you’re
18.
As I got older, and certainly
when I had my own diagnosis, K became my disability guru. She was clued up and
smart about what it was like to live in a world of ‘normals’ who think they’re
a completely different species. This was all new to me. I couldn’t believe that
where I’d once had loads of friends, I now had people who cried when they saw
me, who didn’t invite me to their parties ‘in case it reminded me of how I used
to be’, or who even crossed the street because they couldn’t think of a thing
to say. I kept a strong core of friends that could be counted on one hand and K
was definitely one of the closest. We still bonded over TV shows, music and
books but also over a love of men; the yummy Michael Hutchence being a
particular favourite – oh how we wanted to be Kylie and become corrupted by
him, preferably while he was wearing his brown leather jacket with a bare
chest. K politicised disability for me, helping me understand why it wasn’t
just a medical issue but a social and cultural definition. Even before my
second husband she taught me about the social model of disability, the history of
oppression, cultural representations of disability and why sometimes it just
plain sucks to be viewed differently from the rest of the world. I took K’s
recommendation of ‘Skallagrigg’ by William Horwood as my main text for my
English dissertation. The storyline of Esther, a young woman with cerebral
palsy, was obviously close to K’s heart and we spent many hours discussing
plotlines, ideas and representations. It
was no surprise to me that I got a first – I had learned from the master! Even
when I moved to Milton Keynes, she would come down on a bus for the weekend and
stay at the nearby hotel, spending many happy hours watching films, eating ‘carpet
picnic’ and discussing life. I visited her in her beautiful new custom built flat
and caught up on our new TV crushes, went out for posh coffee and discussed the
problems she was having with the eating disorder she had developed. She
described it, with typically intelligent self-awareness, as a leftover from
rehabilitation where putting on weight was a huge no-no for mobility and
eventually caused moving and handling problems for those caring for you. She
was also switched on enough to know that it was a reaction to the lack of
control wrought by her deteriorating disability. Eating was just about the one
thing she could control, until she couldn’t.
As you may have imagined by my
use of past tense, my friend K died last weekend. I had been so caught up with
my own domestic tribulations (my husband moving out) that I had not checked my
answering machine messages. Our most recent contact, as she veered between
nursing home and hospital, had been mainly by text and messages via Facebook.
There had never been an opportunity to visit that suited us both, either I was
busy or ill or she was, but we were in touch frequently. We had particularly enjoyed
the recent revival of our shared taste in men when she joined my ‘Weird
Celebrity Crush’ page on Facebook and we realised that if we’d ever gone on the
prowl together we would be constantly fighting over the same man! She joined my
book club from afar and read along on her kindle when she could to participate
through messages and a lot of my friends became her friends online. I was
shocked to see a voicemail message from her on my phone because we didn’t communicate
that way and also because she preferred not to use her voice, which she was
struggling to control more and more. As soon as I heard her mum’s voice I knew
something terrible had happened. It came from leftfield. By virtue of having a
disability and the work I have done with disabilities I do have friends who are
very, very sick some of the time so it did not surprise me that someone had
died, just that it was her. I realised that I thought she’d be there forever,
hanging on, just like she did in the sixth form. I felt I had neglected my
friend and was sorry for myself. I was also sad at all the things I had
experienced that she had missed out on. I was sad I never got to say good bye
and tell her just how much I loved her sense of humour, the naughty twinkle in
her eye when we talked about boys, her tactful way of challenging me when I
talked bollocks and her openness and honesty about her life. I will miss her
more than these words can say.
