What's
wrong with you, then?
I
probably need to begin by stressing that this title is ironic and is intended
to reflect the frequency with which disabled people are asked this irritating
and intrusive question. For the record, being disabled is not something which
is "wrong" with me, any more than people who are not disabled are "right"; everybody's
life is impeded in different ways and to varying extents. As an artist, I do
not object to making personal disclosures, in a time and by a means of my choosing.
But being disabled does not give other people the "right" to ask me personal
questions - let alone to expect answers - even if they do phrase it more delicately
than the above. However, try "what are your access needs?" and I'll be more
than happy to answer; you can't help to enable me to do things differently if
you don't know.
Over time
I have come to realise that to some extent I have always been disabled. My school
and student friends remember me as the one who was often off sick, catching
everything going and taking longer to recover than the rest of them, as well
as having obscure joint pains and regular headaches and non-specific illnesses.
They also remember me as the one who was unable to keep up with the rest however
hard I tried; who was easily exhausted; and who always had to end the night
first. In my first job my colleagues decided I had AIDS, and by the time I was
26 I had moving to working as a freelance to make it easier to manage my energy).
Probably
the underlying cause of the impairments discussed here is genetic, although
I have always considered myself to have come off rather well in the genetic
draw. In any case, apart from being extremely short-sighted - probably from
birth, although it wasn't detected until I was about six - I did not regard
myself as being anything other than 'normal' until my late 20s. This website
therefore records my experiences as I gradually took on a disabled identity
in the 1990s. (The bulk of the site was produced in the first half of 1997,
when among other things I was teaching web design at Falmouth College of Art.)
As
befits a bad girl, I have a "bad" back. This started in May 1990 when, at the
age of 28, I was travelling by train to Liverpool to carry out research for
the ITV series Breadline Britain
in the 1990s. Without warning I began to suffer from severe pain and limited
mobility around the upper half of my body and down my right side, and this subsequently
became chronic. As a result I eventually became registered as being moderately
disabled with social services and was given a Blue Badge (disabled driver ID)
and Disability Living Allowance - I became a state-certified crip.
The underlying
cause of my spinal impairment is Scheuermann's Disease, a condition which developed
in adolescence and left the affected vertebrae between my shoulder blades "deformed"
and vulnerable to early degeneration. This means that I have a mild kypho-scoliosis:
the curve of my spine is exaggerated, leaving me with round shoulders and a
prominent stomach; my spine is also twisted slightly to one side; and the affected
area is stiff and inflexible. President
Kennedy suffered from a similar impairment. So did Kurt Cobain.
(However,
although the vertebral plates of eight of my thoracic vertebrae are covered
with lesions at the site where my pain originates, some doctors have ruled it
is more likely that the cause of my impairment lies elsewhere: that I am weak-willed,
lazy, mad, attention-seeking and denying my biological destiny as a wife, cook
and mother. Thus their supremacy remains unquestioned: it is not that I cannot
get "better" because this is beyond their power to achieve; it is rather that
the solution lies with me, and I am refusing to co-operate. Fortunately, I have
also found better doctors.)
When the condition
first developed, the associated pain eventually led me to give up my dance training.
However, the cause of my back problems was not explained to me as a teenager,
and as a result I did not take any precautions to protect my spine in adult
life. I had already suffered from other spontaneous fractures which I had attributed
to my not being able to digest dairy products. This had meant that I was deficient
in calcium, when growing up as this was not diagnosed until my early 20s. With
hindsight, it appears that in May 1990 I suffered from a fractured vertebra,
but as this was not diagnosed and treated correctly, permanent muscle spasms
developed around my upper back. This led in turn to chronic and widespread tendinosis,
a benign neuro-muscular illness which taken in addition to my spinal curvature,
my poor sight and the fractures, suggests that I have a mild genetic collagen
disorder.)
I have written
about my difficulties in obtaining a diagnosis and treatment within My
Experiences as a Disabled Researcher, which is included with my
PhD hyperthesis, and updated this in 2004. However,
I was eventually prescribed 1000mg a day of a non-steroid anti-inflammatory,
Naproxen, which I have found extremely helpful, together with 100mg daily of
the analgesic Tramadol Hydrochloride and occasional Paracetomol.
Shortly after
becoming disabled I threw out most of my shoes, changed my diet, gave up smoking
tobacco - I've since lapsed and then given up again - began regular osteopathic,
homeopathic and acupuncture treatment, took up Tai Chi and started a regular
exercise regime. I have also had sporadic physiotherapy. But none of these measures
have led to any significant lessening of my pain and impairment; it simply makes
it more tolerable and extends my abilities.
(If
you are about to email me to suggest Alexander Technique, aromatherapy,
chiropractice, faith healing or anything else, bear in mind that I can't
afford any more time or money, and I resent suggestions which are meant
as "if only you tried this you'd be fine" or which otherwise underestimate
the reality of my impairment. On the other hand, if you've found something
useful, I'd like to hear about your experiences . . .)
I therefore
continue to suffer from joint problems, permanent muscle spasms and chronic
discomfort/pain which vary in intensity a great deal: sometimes from hour to
hour; sometimes from day to day; sometimes from week to week; and sometimes
from month to month. This can make me very tired, and at worst, for physiological
reasons, it can make me feel very unwell. It can also make me short-tempered,
impatient, irritable, lost in thought or work. At one extreme, it leaves me
bedridden and housebound; at the other, before I also became ill in 2000, on
occasions I was able to trapeze-crew a racing dinghy.
Lots
of things can aggravate or bring on my pain: lifting; carrying; sitting
on most kinds of chair; sitting anywhere for very long without moving;
holding the phone; walking on concrete; being bumped into in the street;
twisting to get through crowds and the aisles of shops; standing in tubes;
travelling in buses; driving over speed humps . . . and being touched.
So although my identity as a disabled woman has been formed in response
to society's attitudes rather than to my impairment, it is
quite limiting and restricting in a lot of ways.
Next:
Travelling
Return to My Not-So-Secret Life as a Cyborg
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to Ju Gosling's Home Page
