A chaotic December meant I didn't do this last year, but I thought I should try to review this year, particularly as it featured such big chunks where I've been decidedly unwell, and there were so many things I wanted to do, had agreed to do or half-started that I then had to give up because of my deteriorating health. Before I started writing things down, it felt like there would be very little to say, but I did really quite a lot in the spring and haven't been completely idle since. This is going to read like a dreadful bragging Christmas Letter, but it's my birthday and this is mostly for my own sake.
I had started doing a bit of editing for the F-Word towards the end of last year, but I think it was at the beginning of this year that I officially became Features Editor. Then my health deteriorated and I had to give it up this summer, but it was a very interesting and satisfying experience - I had previously enjoyed the mechanics of editing other people's work, but the best bit was facilitating others to say what they wanted to say to a significant audience.
I model a winter lettuce - a woman with a lot of hair holds a lovely green lettuce as big as her head.
Early on in the year, I planted a load of vegetables. As the spring progressed into summer, my health meant things got a bit out of control, but those things that weren't killed off by neglect included tomatoes, lettuces, a small amount of pak choi (the caterpillars do love the stuff), radishes, baby sweetcorn (that was particularly good), peas, strawberries, French beans and runner beans. Oh and potatoes - lots of potatoes grown in sacks. I now have two table-height vegetable patches in the garden so I don't have to bend down.
I had written this article last December but it was published this year and I'm very proud of it.
We looked after a lovely old border collie for about a month, which was rather nice.
I have had a lump in my armpit for the past six months. After the first two, it triggered NHS Lump Panic, eight individual strangers got to see my naked breasts in one afternoon but it was all fine. All this happened at a time when I could really have done with a break, but the care I received at the Breast Clinic was extremely good. Do get your lumps checked out.
I model the mermaid's tail - an enormous mermaid reclines in a wicker chair with a somewhat seasick expression on her face.
I made a mermaid's tail sleeping bag for my niece. I scrapped an earlier attempt because it was a bit too small - at least, a four year old would grow out of it in no time. The finished version should serve her well if she is still interested in being a mermaid into middle age.
I wrote quite a few blog posts and a couple of features for the F Word in the first half of the year. My favourite is this about women who, by virtue of being disabled, old, fat etc. are considered sexually and romantically unattractive by our culture.
I drove a car! I have had a provisional license for a few years, but this year, on one occasion, I actually drove. It was awesome!
It was the twentieth anniversary of my becoming sick in August, so I wrote a series of posts about chronic illness and coming to terms with loss. As, if you're reading this, you are almost certainly aware.
I have been writing and editing fiction. Just not nearly as often or as enough as I would like.
In the midst of everything, they happened to discover that I was very deficient in Vitamin D. I've now got an evangelical zeal about telling folks who also might not get out much that they should get their Vitamin D checked. However, I am too polite to give unsolicited health advice, so this may be the only time I ever mention it.
Purple Prose, a book about being bisexual in the UK was published. It includes some of my words as well as the words of far more interesting and brilliant people.
My Dad retired, which has been absolutely great. His work was stressful and now he is not only very much more relaxed, but we see a lot more of him and have had some modest adventures together.
I had lessons in the Alexander Technique to improve my posture, which is something I have fancied doing for years. Of course it hasn't fixed anything, but it has dramatically reduced certain kinds of pain in my back.
Snuffles the hedgehog - a fluffy brown hedgehog eats from a dish of mealworms. She was one ill-tempered hedgehog.
We installed a camera to watch the garden after we'd gone to sleep, to monitor the full extent of hedgehog activity. We saw a lot of hedgehogs and one night, a tawny owl landed in the garden and sat down with one of the hedgehogs to have a meal.
Stephen acquired a tabletop game called Zombicide, where you go round killing zombies with dice rolls. This turned out to be tremendous fun and we have spent several happy evenings liberating prison blocks from the zombie hoards.
We saw a little more of our nephew and niece this year and had some really good times with them. They are both fantastic children and so much fun to be around.
A young blackbird - a brown bird with pronounced beak and speckled breast, sitting in a bush with white flowers.
We think at least one hedgehog was born in the garden this year, as were some sparrows and a blackbird (left). This chap startled me when I was trying to see if he was still in the nest.
Politics has been pretty grim. The world's progress towards being a more peaceful, freer, happier, healthier place - which has been considerable, even in very recent times - is in grave danger of stalling. A very great number of good folk have brought that progress about through hard work and I hope, a similar effort by very many people in both big and small ways will get us back on track. That may sound a bit crass amid all this light personal news, but like a lot of people, politics has been deeply personal this year.
We managed to get to the theatre for the first time in a few years to see the Cambridge Greek Play do Antigone and Lysistrata. The latter was particularly brilliant, satirising the ongoing political nonsense and with songs in Ancient Greek we were all invited to sing along with.
Two happy people at a picnic bench with a field in the background.
As everyone knows, Stephen is an amazing person, but he has been particularly heroic this year. We've always performed care for one another in ways which merge with everyday kindnesses and physical expressions of affection, but this year the work of keeping us going has shifted very heavily onto his shoulders. While it has been tough, we have not only survived, but we've often had a great deal of fun.
It's been a very difficult year for several of our friends and family; other people have had major health crises, bereavement and money worries, as well as the personal effects of the year's disastrous political events. Thus I come to the end of 2016 with a heart full of love and hope that next year is much much better and brighter for those who have had to battle through to this point.
I hope that anyone who actually read down this far has a wonderful, peaceful holiday season whatever you're doing with it and a very happy New Year.
[Content note: This post has a lot about status-anxiety and thus issues of self-esteem and the judgement of others. Passing reference to diet talk.] I managed to do the audio for this but it's not brilliant:
As I've mentioned in
previous posts, the Kubler-Ross stages of grief are not about a fixed
and inevitable sequence. They are merely common experiences which are
likely to happen in this approximate order following loss. However,
with chronic illness as with other dramatic and complicated losses,
we are very likely to revisit earlier stages.
This is the bad news
about acceptance; the first time we feel that we've accepted our loss
is undoubtedly a breakthrough, but this is very unlikely to be
something that happens once and forever. This is partly why I've been
writing about loss and chronic illness a full twenty years since I
first got sick. I have absolutely come to terms with what happened
back then. I sometimes have to come to terms with what is happening
now.
Our dominant triumph over adversity narrative means that those stories about chronic
illness which aren't about the search for a cure or heroically
raising Awareness are usually about spectacular reinvention: Chronic
illness ended my career as a stock-broker but now I'm building a
million pound empire by hand-knitting mushroom-warmers.
Reinvention is
inevitable but the creation of a new life which somehow mitigates all
the problems associated with chronic illness is unlikely. It's a very
rare chronic illness which doesn't fluctuate over time. Some are very
likely to deteriorate. Some have a good chance of improving to some
extent, which is not a straight-forward prospect either. Life
circumstances can and probably will change in a way that draws loss
back into focus.
It may be you find
peace, comfort and creative fulfilment in spending your days
hand-knitting mushroom-warmers. But this could happen without making
a penny and there's no realistic prospect of replacing a
stock-broker's income. It won't get you out of the house or provide
the interactions or social standing associated with your previous
work. Plus, despite the relative low pressure, knitting good-quality
items and selling such knitted items is neither effortless,
stress-free nor unaffected by fallow periods.
By definition, chronic
illness can't be fixed. But having come to terms with that, it is
vitally important to recognise that the life-changing effects of
chronic illness cannot be magicked away either. My previous posts
have been about how our disablist culture makes it so much more
difficult to move through stages of grief when we become chronically
ill. This post is about making sure we don't replace all that with
some other equally futile struggle imposed by a culture that doesn't
want us to let go of this particular kind of loss.
For the first ten or so
years of my illness, my energy was focussed on a sequence of rather
unhelpful questions:
How can I regain my
health?
If I can't regain my
health, how can I complete my formal education?
If I can't complete my
education, how can I make money when I'm too sick to work?
If I can't make money,
how can I stop other people thinking I'm a waste of space?
Ultimately, for me, the
answer was the same in every case. At 35, I am in worse health than
in my late teens, I have just 3 GCSEs to my name and I've been
dependent on benefits my whole adult life. Various adventures in
higher education came to nothing. I am occasionally paid for my work
but could never do enough to regularly supplement my income, let
alone replace the state benefits I receive. We live in a culture
where a successful person is generally understood to be someone with
a well-paid fulfilling job. By that measure, I am a complete and
utter failure.
Of course, I am not and
nearly nobody thinks I am. But we do need to talk about status.
Small children are told
not to compare themselves with others, but then schools, advertising
and often even their parents will ask them to do just that. This only
increases as we get older, as we are sold the political myth of
meritocracy; the idea that how rich, successful, beautiful and
healthy people are is a reflection of their virtues and personal
efforts. Or perhaps worse; the idea that this should be the case and
if we're not as rich, successful, beautiful and healthy as we deserve
to be, then something has gone drastically wrong – either with
ourselves or with other people.
People with chronic
illnesses don't live apart from our status-anxious society, and
circumstances – isolation, frustration, time on our hands – can
make status-anxiety even worse than for folks who are busy getting on
with other things. The whole game is rigged, but we have even less
opportunity than most to even take a punt.
Even folk who are able
to work with chronic illness are acutely aware of the scrounger
rhetoric which might be applied to anyone who is not functioning at a
hundred percent. We hear about the “hard working families” for
whom politicians claim to speak (so not us?), as well as receiving
the steady drip of advertising and aspirational TV where the most
valuable people are wealthy healthy consumers. Even cultural advice
around health is status-based; there's a reason New Age magazines
promote total silence (bad news for most human brains) as necessary
for “true rest”, why newspapers focus on exotically-grown produce
your gran never heard of as health-giving foods, when all their
nutrients can be found in cheap local veg and cereals. Health is
about status too and there's cultural capital to be gained in looking
after yourself expensively and elaborately.
Added to this are the
dominant stories of tragedy and triumph over adversity which are told
about people like us, the supercrip image of every disabled person we
see on TV who is neither a villain nor an object of pity. They are
geniuses with mental illness, they are blind pilots, they are
wheelchair-users who climb mountains. It's bad enough that we can't
possibly keep up with our peers, can't work as much as them, can't
earn as much, can't do as much in any regard and have far more
limited choices around family and relationships. If we start
comparing ourselves to the most visible disabled people within our
culture, we're in even more trouble.
Of course, we rarely
talk about this stuff explicitly; we don't acknowledge the race, so
it's hard to come to terms when you have well and truly fallen out of
it.
I've not entirely
sorted myself out with status. Working makes me feel good. But
interruptions to that are frustrating to me not only because I can't
do the thing I find uniquely enjoyable and fulfilling. Nor is it even
the lack of feedback, which matters too – few people write only for
the page. The less I write, the less I feel like a writer. The less
paid work I do (which isn't much at the best of times), the less I
feel like a writer. The more slowly I move towards getting a novel
published, the less I feel like a writer. And of course my identity
shouldn't hinge on being any one thing, but there's part of me that
feels that if I am not a writer, I am not anything; I am without
value. Which is nonsense and I know it.
I know other people who
are able to do even less of the things they are passionate about, or
people whose health is much better than mine who lack such a central
focus. I don't for a moment think less of them; I know I'm extremely
lucky that writing was always there. But this is the nature of
status-anxiety; we anticipate judgement in situations where we'd
never pass any ourselves. Just the other day, my Mum explained her
nervousness about a couple of upcoming social events, in terms of her
being “just a school secretary”. She explained that being in her
sixties and still working for the kind of pay that a school secretary
receives suggests someone who lacks the ambition, drive and
intelligence to get further and do something more impressive.
So I said, “If you
imagine other people think that about you, what do you imagine people
think about me?”
And of course, she
didn't imagine anyone would turn their nose up at me or any of her
friends or family members who are out of work, or who work as
cleaners or in supermarkets; she would be positively outraged at the
suggestion that any of us were in these positions because we lacked
ambition, drive or intelligence. We apply a different standard to
ourselves, but every time we vocalise this unexamined, we risk
raising the unrealistic standards of those around us.
One of the biggest
problems is that disabled people are conditioned to explain ourselves
to others in much the same way we would explain ourselves to doctors
or the DWP; there's a reason why we answer rude questions when others
would not. I have heard friends explain their conditions and their
work/benefit status to strangers in all kinds of circumstances where
people didn't need to know about either.
Of course, people
respond to the information they're given. If you tell someone you're
a jet pilot, they will talk to you about planes and travel. If you
tell someone you have Lupus and haven't worked for five years, they
will come up with an anecdote about an uncle who had Lyme Disease (it
begins with L, after all), a deeply personal question about your
condition and a suggestion for work they imagine you might be able to
do because it doesn't involve a lot of standing up.
This is bound to make
you feel fairly crap about yourself, and reinforces the idea that you
are set apart from other people, from some mythical normal world of
health and success.
I imagine this is made
even more difficult for firmly middle class sick people who don't
meet any of the millions of working people who readily avoid talking
about their jobs because they're either boring or unpleasant (some
wealthier people have rubbish jobs, but they're handsomely paid and
respected for the tedium). For perhaps the majority of working
people, even when it's reasonably enjoyable and fulfilling, work
doesn't reflect who a person is, but merely what they do on weekdays
to pay the bills.
It is not that people
with chronic illness should be ashamed of anything – our health,
our work status or anything else - but there's much to be gained from
presenting ourselves as who we really are, what we really do, rather
than starting all interactions with the excuse we have for not being
like other people.
There's one of those
inspiration porn memes which features an amputee child running on a
race track with the slogan, “What's your excuse?”
And of course it's
silly and offensive in ways that don't need to be covered here, but
there's a tiny part of me which responds, “I have an excuse. Do I
need to let anyone know about that?”
Some people feel they
do. As mentioned in my Sadness post, I have come across folks who
perform the role cast to them as unfortunate ill person, motivated
in part by the mistaken belief that the bullying and skepticism
disabled people face is due to ignorance, and enough information can
put everything right. I'm not talking about folk who merely discuss
their health or even complain about it a lot, but the chronic illness
equivalent of those women who perform motherhood – not just talking
about or referring to the experience, but placing every topic of
conversation within that context, vocalising the most mundane aspects
of it, demonstrating how they're doing the right thing (often
elaborately and expensively) at all times. Either involves a lot of
generalisation; motherhood feels like this, life with chronic illness
feels like that. And while the performance of motherhood tends to
exude positivity – it's the toughest job in the world but the most
rewarding! – the performance of chronic illness is about suffering;
it's just the toughest damn job in the world.
It is an ongoing sick
note to the world and of course, that answers the issue of status: I
would be doing amazing things if I was not ill, but instead I'm doing
an amazing job of being ill, fighting it and documenting it to
inspire and inform others. And this can be really difficult for the
rest of us to be around.
It contributes to a
culture where disabled people are defined by our impairments and
non-disabled people believe they have a right to expect a moving and
detailed account of our lives and suffering – non-disabled people
get to keep the power. Bullies get to keep on bullying.
Yet beyond this, even
though I am acutely conscious of these politics, when I meet with
such performances, I find myself doubting my own perspective on
illness. I've always managed to be reasonably upbeat but at this
point in my life, I find myself particularly blessed; I am married to
Stephen, I have some great friends, my family relationships are the
best they've ever been, I love my home which has a garden and the
garden has hedgehogs living in it. I have some big health-related
frustrations impact on my work – especially this year – and
upsets and worries occur from time to time, but otherwise, I'm really
enjoying my life.
Stephen has always
enjoyed the Eurovision Song Contest and because I'm so cool, the
first time I watched it with him, I kept thinking, “I can't be
enjoying it this much. Not really. There is nothing cool about this.
Maybe I am only enjoying it ironically?”
And in the same way,
when confronted by people whose mission it is to let the world know,
in all their interactions, how an illness like the one I have has
ruined their lives, there's a part of me that thinks, “Maybe I'm
kidding myself? Maybe it is impossible to be as content as I think I
am?” After all, these folks have much of our culture on their side;
we're not supposed to be happy.
But louder than that,
there's a part of me which thinks, “Maybe other people think badly
of me, because I don't do this stuff. Maybe when I'm not around for a
while, people just think I don't care about them, that I'm busy with
other things. Maybe people look at how little I achieve and assume
I'm just lazy. Maybe people think I'm a scrounger. Maybe people think
I don't look after myself properly because I don't detail all the
boring ways I look after myself.”
And of course, this is
why people do this stuff in the first place; this performance of
illness is, to some extent, what our culture expects of us. If I was
a character in a book or a film, the first thing you'd know about me
was my medical history; my character or people close to me would
discuss it at length. You would see me gritting my teeth in pain,
taking medicine, lying about looking unwell and so forth. You would
see this because my character would be all about pathos; my illness
would function as a reason to feel sorry for me and for those who
care for me.
In the face of
oppressions, big and small, some folk imagine that sympathy will hold
back the dogs. In reality, there's no way round the fact that some
people will pass judgement on me given the society I live in. It's
very rare these days that anyone expresses anger towards me, but when
they do, they always manage some snide remark about my health or the
way I manage it. No amount of information is ever going to shut that
down.
Avoiding these kinds of
people and this kind of thinking is as essential to acceptance as
avoiding folks who constantly talk about how fat and hideous they are
and what diets they're on when you're trying to feel okay about the
size of your bum.
The question I should
have asked much sooner than I did was
How can I live the best
possible life I can within what limitations I have?
Which sounds obvious
and easy enough, but is in fact a tremendously complex question. It
demands we look at what our actual limits are - and not in a
pseudo-existentialist, the only limits are the ones we impose upon
ourselves kind of way. Our health is not only a limitation, but
most likely a changing limitation. We all need some money so we need
to source this, whether through a new way of working, wrestling the
benefits system, relying on a working partner or finding some kindly
eccentric benefactor. We need food, clean clothes and to live in a
reasonably sanitary environment, so we need some way of making sure
that happens. If we are a parent or a carer, we need to make sure
that parenting or caring carries on. All these limitations are real,
often quite messy and prone to change even when our health doesn't.
And then there's the
matter of what is best. If there's any left after we have secured our
basic maintenance, what should we spend our time and energy on? The
thing that's most fun, the thing that's most fulfilling, the thing
that's most useful to the world or the thing which makes us most
comfortable materially?
Of course, these are
not chronic illness questions, but being alive questions. Everyone
has limitations. Everyone. Some people undoubtedly have much easier
lives than you or I, but very many people who don't have chronic
illness nevertheless face a lot of limitations and complexities on
their particular journeys through life.
There's a tendency for
people with chronic illness to feel set apart from some mythical well
world where everything is straight-forward and I understand that –
I have had conversations with friends and family where it's taken me
less time to say what I've been up to in a month than they take to
report on a single day.
However, acceptance
means moving on from the sense that our little piece of the world has
stopped turning while everything else carries on like nothing's
happened, that sense that separates us from those with different
experiences. In the same way, when we finally come to terms with a
death, the imposing sense of that empty chair eases; the chair
remains empty, but it no longer dominates the room.
Again, this is
complicated by the fact that acceptance isn't a happy ending we
arrive at just once – with chronic illness, we are likely to
experience loss again, our world will once again stall on its
rotation. But having reached acceptance already, it gets easier to
ride out our inclination toward denial, anger, bargaining and sadness
and get it turning once again.
Content Note: Discussion of depression, mention of suicidal thoughts.
Mr Goldfish has provided audio for this post:
My general plan in
writing these blog posts was that I would conclude with Acceptance on 26th August, the 20th anniversary of my becoming ill. I
suppose it is fitting that the last several months have been pretty
rough and things didn't go according to plan.
The forth stage in the
Kubler-Ross model of grief is usually described as depression, but
I'm going to talk about sadness. Depression and extreme sadness are
different but despite many attempts to draw one, there's no magical
dividing line between the two. Both can cause physical pain and
profound exhaustion, both can damage one's physical health, quite
apart from the ways they effect behaviour. Either one can lead into
the other.
However, in general:
Depression may
feature a great mix of negative emotions including extreme sadness
but also raging anger, prolonged anxiety, panic or profound
numbness. Extreme sadness is more often mixed with more positive
emotions, like nostalgia, gratitude and love - sadness can be
bittersweet, depression not so much.
Depressive
reasoning tends to lead to more extreme, pessimistic and
strongly-held conclusions. A non-depressed sad person may feel
despair that life has irrevocably changed, and wonder how on Earth
they will be able to cope. A depressed person may feel certain that
life is and will remain unbearable and they will not be able to
cope.
Depression is more
likely to be unrelenting. A common experience when someone first
realises they're depressed is that they're in a situation where they
would usually expect to feel much better - in the company of good
friends, doing something they love etc., and they still feel
completely flat or on the verge of tears. Sad people inevitably feel
out of place in situations where others are happy and celebrating,
but it may be more possible to temporarily lift one's spirits. In
the same way, a sad person may feel that others understand and
support them, while a depressed person may feel very extremely alone
- feeling either like a burden to their loved ones, or suspicious
that others don't truly know or like them.
Although it is
impossible to draw a neat line, it is important to consider the
differences; sadness can be horrible but depression can be dangerous.
Because the lives of people with chronic illness - whether physical,
mental or a bit of both - are often difficult, it is easy for both us
and other people to mistake depressive symptoms as a normal response
to our primary condition or even part of that illness. A bit of a
tangent, but an important point.
The Kubler-Ross model
is an imperfect model of what happens to everyone coming to terms
with loss. Some people skip stages, or experience these stages in a
different order and of course, some losses, like those experienced
during chronic illness, are ongoing - we sometimes return to stages
of denial, anger or bargaining when the loss deepens or we're somehow
reminded of loss we thought we'd gotten over.
Sadness is the black
hole that the psyche holds out against if at all possible. Whether
consciously or not, we tend to go to considerable lengths to avoid
the sadness. Unlike the stages before it, sadness gives you nothing
to do; denial, anger and bargaining each push a person towards some
kind of strategy, whether carrying on as if nothing has happened,
raging against the situation or negotiating a reprieve. Sadness
acknowledges the finality of loss - even if an illness might improve,
there's a certain kind of life which will never now be lived. Sadness
is hopelessness and helplessness and as I've mentioned before, the
mind will perform all kinds of scary tricks rather that to consider
itself helpless. To return briefly to my tangent about depression, I
have experienced depression on two occasions and to be honest,
neither of these were very heavy on sadness; I was scared and angry
(mostly at myself). I was scared of feeling the sadness I could see
coming and that fear made me want to die.
However, eventually,
sadness is an almost inevitable feature of loss. It is deeply
unpleasant, of course, but it is natural and often necessary. While
we live in a culture which will, at least sometimes, tell you that
anger is useful (and it sometimes is), it is rare to hear that
sadness is sometimes absolutely vital in order to cope with loss. We
expect people to be sad, of course, but we expect that to happen in
an orderly culturally-appropriate manner - bereaved people can find
themselves subject to disapproval for grieving either too long or not
long enough (or, as is perhaps most common, fluctuating in their
grief over time).
Meanwhile, the saying
goes that you don't know what you've lost 'til it's gone - that's
never been my experience. My experience is that you don't necessarily
know what you've got until you acknowledge what other things are gone
- that other possibilities that have fallen away. For me, sadness has
been the great stock-taking; it shows you both what you've lost and
everything you have left.
Whenever I have lost
loved ones, I am reminded of how generally very lucky I've been with
the people in my life, how lucky I am with those still living, and
all the gifts my loved ones give me. Every time I grieve for my
health – or the slightly better health I was enjoying a short while
ago – I become only more acutely aware of the people and things
that make life pleasurable even when I'm stuck in bed all day and
asleep for most of it.
This was not always the
case, because for many years, I tried to avoid this sadness. If I
ever cried about my health, I would cry in fear and guilt; I blamed
myself and felt that if things carried on in this direction, I
wouldn't be able cope and I would be an even greater burden on the
rest of the world. Part of this was because I believed I was useless
and worse health always meant a greater degree of uselessness. In my
first marriage, my worst health meant an escalation of abuse. But
part of this was because I never allowed myself to actually think
about what I had lost within that panicked grappling around for
answers.
I've been especially
conscious of this during the last several months when I have been
having a long crappy patch. I'm having to give up my editing work at
The F Word. I've achieved very little work of any kind. Small fun
projects and social engagements have fallen away. A painless
complication caused a bit of a cancer scare - only a bit of one, I was fairly sure I didn't have cancer – which took a lot
of energy to get checked out and put me in something of a morbid
state of mind for a few days here and there. I got sad.
However, when September
arrived and I began to think about the autumn, I was looking forward
to the months ahead. And to be honest, for most of the time I've been
ill, I would have been in a complete panic. I would be thinking about
the theatre tickets I have for the middle of October* and despairing
that I might not be able to go, and it will be a huge waste of money
and a grave disappointment to myself and other people. I would
probably, even this early, start to worry about Christmas – whether
I could be better by then, or whether my ill health would mess things
up for other people. I would be panicking about the last four months
of the year and how little I had achieved this year so far, and how
another year would pass without meeting X, Y or Z objective.
And of course my life
is much better now than it has ever been, so there are lots of
reasons why I can entertain the idea that I may spend a big chunk of
the next few months in bed without feeling desperate. But part of it
is that I let myself get sad. I never used to do that. I have let
myself cry over things I have had to give up. I have let myself cry
over the uncertainty. Then I've thought about those things in my life
more reliable than my health and felt extremely grateful.
This is not a “So
really bad things are good things in disguise” argument; there are
obvious tangible ways my life would improve if my health did (and if
nobody I cared about ever suffered or died – is this so much to
ask?). All I'm saying is that the things that help us cope with
sadness are not present until that sadness is felt. I have perhaps
been lucky in my life not to be struck with any spectacular tragedy,
but in my experience, fear and guilt are a lot more difficult to
negotiate than sadness.
I'm getting repetitive
with sentiments along the lines of "our culture is pretty messed
up about this emotion" - and of course, in a way, this is
inevitable. Simplifying the breadth of human experience into
particular and thus limiting narratives is kind of what culture does.
Modern philosophies are
particularly bad with sadness. There's a whole world of books and
seminars dedicated to positive thinking which involves eliminating
negative thoughts - or even a bodged-up version of Buddhism which
places the responsibility for all unhappy feelings at the feet of
those who feel them. Even some versions of Christianity -
historically sometimes too accepting of sadness and suffering - now
demand that followers face every negative event with a smile because
it's all God's plan and those who lament their experiences somehow
lack faith.
Disabled people find
ourselves in a double bind with this sort of thing. We are expected to be sad people, perhaps especially people with chronic illness who
have lost a non-disabled life and who have debilitating and sometimes
demoralising symptoms. Many disabled people actively resist that; to
be sad is to give in to the problem – to give in to the stereotype.
Many many disabled people are encouraged instead to stay in earlier
stages of the grieving process; to stay in denial and pretend that
things will improve at any moment, to dedicate one's time and energy
to regimes and therapies which promise to bring about recovery, to
not “give up”, to get angry and stay angry in order to “battle”
illness. In other words, we are pressured to live up to another
stereotype.
Stigma is also a
problem. Some people with physical chronic illness who've been
through dismissal and misdiagnosis live in fear of being perceived as
even slightly depressed. And many politicised disabled people don't
want to be seen as being sad about things they know to be morally
neutral facts of their experience - facts for which are
automatically met with pity and unwanted sympathy from strangers. It
can feel like being sad – or certainly expressing sadness - about
our impairments is somehow letting the side down.
On the other hand,
sadness is often portrayed as a romantic or heroic characteristic,
something which leads a brooding genius to stare out the window, a
single tear staining his cheek. We're pretty uncomfortable about
depression as a chronic messy illness, but there is a significant
element of our culture which regards sad people as deeper thinkers,
more sensitive and empathetic - so long as we don't see them crying
in public or wandering the streets in dirty clothes.
And
often, people with some kinds of chronic illness feel obliged to, to
some extent, perform their role as an unfortunate ill person. Not
necessarily for sympathy (although perhaps sometimes, for a good
cause – you never see anyone raising Awareness in newspapers
and magazines with a smile on their face). But more often, I think
this performance is simply for peace – fed up of hearing that they
don't look or seem sick, or of newspaper stories about benefit fraud
whose headlines amount to Disabled person seen having a good
time, there's a temptation to show the world that you're
suffering.
I know some people are
really afraid of their lives looking too good; too comfortable, too
happy. And this is also about our unequal society in a more general
way; marginalised people of all stripes who seem to be having a good
life are those who most offend bigots – as Chimamanda Ngozi Adichie
says, "There
are people who dislike you because you do not dislike yourself.”
Happy disabled people
are, after all, the least deserving of pity and for some people, our
only purpose is as objects of pity to make non-disabled folk feel
good about themselves. Unhappy disabled people are far less
provocative (at least if their unhappiness is relatively quiet and
passive).
All this risks
undermining authentic psychological reactions to the losses we
experience through chronic illness. We are stuck between a tragic
rock and a plucky hard place.
It's not that we
shouldn't feel sad (or angry, grateful, defiant, whatever) – but
that we should give ourselves emotional space to feel whatever we
happen to feel. We should reject both tragedy and the triumph over it
as personal narratives.
Because I feel sadness
is largely something we must ride out rather than something we need
to work through, here are some tips for managing sadness - not
for curing it, or moving on from it, but managing sadness rather as
you might care for a physical wound:
Attend to your physical
comfort.
Make sure your diet is
as pleasant and nutritious as possible, that you are keeping warm (or
adequately cool during those few days of the year when it's a bit too
hot), are wearing attractive comfortable clothes and are spending
your time in as comfortable a position as you can manage. If
possible, work out some appropriate physical exercise and keep to
it. When possible, get a little sunshine and fresh air. Don't fight
the temptation to sleep unless you have a good reason to. If you have
one available, have an attractive person rub lotion into your back.
It's really amazing how
much physical comfort effects mood; I remember my mood once
transforming after I changed my socks when one had a hole in it - I
hadn't really noticed the hole, but the world seemed considerably
more bearable in its absence (if you donate items to homeless people
or refugees, priorities good strong socks).
Do not try to avoid
negative thoughts or universal sadness triggers.
You can't avoid
negative thoughts. You can promote positive ones. You can talk about
your negative thoughts and get a better perspective on them. Just
writing down your negative thoughts can help you begin to sort them
out. However, even when negative thoughts are irrational and
unhelpful (which, you know, they aren't always), they can't simply be
willed away, or drowned out with loud cheerful music.
Folk sensibly attempt
to control their exposure to material which upsets them, but this is
only possible for fairly specific material - like avoiding graphic
depictions of a particular kind of violence or checking whether thedog dies. Trying to avoid things – thoughts, stories,
conversations, news etc. - which are sad is not only a futile and
miserable exercise, but also a recipe for anxiety. Even if you're
not feeling sad or reading about something sad, something may come up
at any moment to change that. So you're left feeling on guard and
unable to fully engage in anything new or potentially interesting.
I find it helpful to
consider passive activity like the music playlists I put together. A
good all-round playlist has a combination of fast and slow tracks,
upbeat and sadder songs. If you're reading, watching TV or whatever,
then sad content will come up even in comedies and children's shows
(especially children's movies - goodness me!), and that's okay so
long as it's part of a mix. Material which is interesting, where
you're learning stuff, or which allows you to have a conversation
with other people (now or later) is also very good.
Express your sadness.
When someone you love
died last month or even five years ago today, it is entirely socially
acceptable (if not always easy) to talk about your sadness. With
chronic illness, when sadness effects us can be fairly random – or
at least random to other people who don't see whatever events have
triggered the spell. However, I strongly recommend trying to tell
someone, just so this thing can be heard and acknowledged. Failing
talking to a friend, write about it, compose a song, draw a sad
picture to get it down in some form. It is when sadness is not
expressed that it is most likely to fester and mutate into something
else; something bigger and messier. Not just a fresh depression,
which is a risk, but also common or garden bitterness and resentment.
Look forward to small
events which will happen.
It's probably an
instinctive habit for people with chronic illness to look forward to
the next meal, the next episode of a television programme or the next
chapter of a book, but it is sometimes necessary to do this
consciously. When you feel sad about the way your life is, it can
feel pathetic to get excited about the small stuff, but the small
stuff really is amazing. We live in an amazing world. That's not a
reason not to be sad - terrible things happen in this amazing world
of ours - but it is a reason to value all the joy we have available
to us today. The sun will rise in the morning and the flowers will
bloom in the spring. If possible, plant some bulbs.
Keep a record of your
gratitude and pride.
This is hard but helps
me a lot when I'm struggling at all. Get a notebook or allocate a
text file and towards the end of each day, write down something
you're grateful for and something you're proud of. It doesn't have to
be anything amazing - you might be grateful for having a nice warm
pair of socks and proud that you wrote out a birthday card. If you
have more things to feel grateful for or proud of, write them all
down. This does not cure sadness or any other negative emotion, but
it allows you to focus, regularly, on good things you have in your
life and good things you have in yourself.
* At the point of publishing, having pretty much resigned myself to abandoning the theatre trip, it looks like it might actually happen. Hooray!
When they announced
that there was finally going to be a referendum on the UK's
membership of the EU, I thought, "Well, that's it then. We're
out."
The European Union is a
truly excellent idea, imperfectly - and sometimes badly - put into
practice. I felt sure we would vote to leave because it has long
provided a political scapegoat for domestic politicians of all
stripes - it is rather like an absent wife, who a husband might moan about and use as an excuse for his own inaction and inadequacy.
All his mates think he would be so much better off without her, but
then one day they actually meet her and wonder how such a woman puts
up with a twat like that. Not that she's an angel, mind you. But he
is a complete twat.
Whatever happens, the EU
will still exist tomorrow and honestly, that is a wonderful thing. My
parents have got into their sixties without seeing any outright
conflict between the countries of Western Europe - possibly the first
generation to do so since people started organising themselves
into approximate nations. I grew up at the tail end of the Cold War,
but a further conflict between us and one of our close European
neighbours has been and still is completely inconceivable, because of an idea borne out of discussions that started at the end of a war which killed around 3% of the world's population. This is an incredible achievement.
But of course the EU is a collection of countries with different political cultures and mostly muddles through, sometimes failing to act on urgent matters, sometimes acting badly. Fairness is an extremely messy question when you're talking about such a diverse group of countries with equally diverse needs and resources. The EU is one of the best political ideas that anyone ever had, but you know, it's not brilliant. It is merely better that we should be part of the effort.
The European Convention of Human Rights has been by far the most successful application of
the tenets first written down in the Univeral Declaration of Human Rights in 1948. In principle - although again, far less often in
practice - people in the EU have these rights. Our governments can't
kill us unless we pose an immediate threat to others. Our governments
can't torture us or imprison us indefinitely without trial. They
can't interfere with our family life, our religious practices or our
private lives in general. I can characterise the government of my
country as a twat - I can say pretty much whatever rude things I like
about them without fear of interference.
This is amazing. We
think it's normal, but it's not normal. It is justice, it is right,
but most people in the world do not have nearly this degree of
freedom. And it is freedom. Human Rights are often framed as
protections - which they are - and of course, most people feel
comfortable and comfortable people don't feel they need any
protection. But the reason we feel so comfortable is because we are
free! And those of us who care most about Human Rights are usually those who
are less comfortable or who know that, elsewhere or not so long ago,
our lives would be dramatically blighted by governments who would wish to control, silence or eliminate people like us.
And of course, in
reality, Human Rights are still abused in Europe, including the UK. There are
outright violations like police brutality and abuse, and there
are still actual laws on our books which fall short of those sacred
tenets.
And this is relatively
young legislation, so there have been some fabulous newspaper
headlines about ridiculous cases being brought under Human Rights
legislation, with no follow up article when such a case is thrown out
of court. But after a bloody long battle, our Human Rights Act remains the most fantastic
delicious and brilliant piece of legislation ever enacted in our country.
Whatever happens
tomorrow, this is still the case. The EU remains intact, whether
we're in it or not and you and I and the rest of the planet will
still be better off for that fact. The EU gave us Human Rights and
we'll still have them tomorrow. We'll always have to fight our
government for them - this one has threatened to scrap ours - because
people in power always want more power. The EU has also given us a (metric) tonne of equality and workers rights legislation. It has made us a
safer, healthier, freer and more just country. That can't be undone
overnight.
Like I said, when they
announced the referendum, I thought it would be straight-forward. I
have been both gratified and disappointed at how wrong I was.
Gratified because an awful lot of people - far more than I imagined -
feel as I do or have come round to my way of thinking. Disappointed
because the argument has become so ugly. I had imagined any argument
would have been about bureaucracy, about future expansion
of the EU's powers and about money - how much money goes into the EU
and how much comes out. I'm appalled at the racism and hatred I have seen in the
last few months. Appalled and frightened.
Whatever happens, our
country needs to do a lot of healing from all this.
We all need to be
careful about our bubbles. I've seen a lot of racism (often with a
sizeable pinch of homophobia, disablism and misogyny mixed in) because I've
seen it on Twitter and because it has been highlighted by anti-racist
friends and allies. And I won't say "but clearly, 50% of the
country aren't racist" because we live in a racist society and
such a statement would wrongly exonerate the other 50% as well. However, many
Leave voters will simply not have witnessed this behaviour from their
fellow voters. Some will only have seen the debate as reported in a
particular newspaper, in the local campaign literature or as portrayed by friends, family and colleagues. Some will not have
seen much of the debate at all, but will be voting according to their
own values or priorities which have absolutely nothing to do with
being scared of or feeling superior to people from other countries and cultures.
So if we vote to Leave,
we ought not to despair of our fellow countrymen, women and others.
We're in a mess - as I was growing up in the 80s and 90s, there was greater
and greater acknowledgement that racism was a problem which decent
people tried to combat in themselves and others. In recent years,
increasing Islamophobia has twisted that trajectory and in the last few
months, I feel that public discourse has taken a firm step backwards. However, whatever happens now, we need to start sorting
this out and that won't work too well if we start from the perspective that half of everyone around us is a raging Nazi.
Some people are afraid
we're about to swing even further to the right but I think that's the one
good thing about this referendum; it answers a question which has
been used to stir up anger for the last few decades. That momentum is
about to drop away. If we vote Leave, the economy is about to take a
dip - even if things work out well long term, this is pretty much
inevitable. If we vote Leave, our Prime Minister may resign and there
may even be a general election in a few months, but the EU will no
long be a factor in that election - why vote for someone offering
independence and almost nothing else when that's already been achieved?
That's not to say this
whole debacle has not been immensely damaging. It has been by far the
most divisive set of political events in my lifetime. It has brought
out the very worst in some of us, including some very powerful people who hold significant influence over our lives. The devil is now a regular feature on our TV screens, even though he doesn't yet control their content.
We will need to deal
with all this, whatever. But the EU will still exist, we will still have Human
Rights and it would be a great mistake to fall into despair at any
outcome of this referendum, given how much work now needs to be done.
Content Note: Refers to domestic abuse, disablist abuse, some mild swearing.
I decided to provide audio for this in order to avoid the irony of post which is so long it might be inaccessible to some people who might benefit from it:
In the face of loss,
folk clutch at straws for something that will make everything okay,
make deals with their gods, plead with their departing lover and so
forth. Even after someone has died - especially if it's happened
suddenly - their loved ones may run through a whole heap of scenarios
where, if only one tiny detail had changed, if only they had
personally picked up the phone or paid a random visit, the death
could have been avoided. It's all too late, but the mind continues to
try and negotiate an alternative deal.
I said in my post about denial that our disablist culture helps to keep people with chronic
illness stuck along the process of coming to terms with loss, and
this is especially the case with denial and bargaining.
We are encouraged to
bargain for our health in the same way we're encouraged to keep an
unflinching faith in the unlikely prospect of fast and full recovery.
With chronic illness, it's difficult to engage even with conventional
medicine without psychologically bargaining; believing that if you do
the right thing, eat the right thing, take the right meds etc., then
you will minimise what you've lost.
But this is chronic
illness - by definition, conditions which can't be cured and don't
usually go away by themselves (and if they do, they take ages). These
illnesses tend to fluctuate and both relapse and remission can arrive
either at random or due to events we have no control over, such as
trauma, viruses or family stress.
Taking care of our
health should never be about minimising a loss - that's simply not up
to us - but rather maximising our chances of being as well,
comfortable and happy as possible. When we feel like it. If we overdo
it today, we're not breaking some cosmic deal; we don't deserve to
feel like crap for the next week because we don't deserve any of it.
And that's something
which is sometimes very hard to remember.
A significant part of
what we lose when we become chronically ill is about identity and one
of the worst psychological - and sometimes spiritual - effects of
chronic illness is that it gets harder to believe that you are a good
person.
Everyone wants to feel
like they're a good person and most people find at least some
sense of this in the things they do for others.
Even if they don't spend their day saving small animals or lifting
children out of poverty, many people's work is useful and helpful to
someone else – people who genuinely feel their work is pointless
have a problem. Then there are the roles we have within family,
within friendships and communities; people feel good about looking
after one another.
Whatever our level of
capacity, people with chronic illness can do somewhat less than we'd
like. Some of us can't do very much at all. The best intentions in
the world can't give an elderly neighbour a lift to the hospital,
babysit for an afternoon or simply show up and be with a friend whose
world is crashing round their ears. Lower incomes limit our ability
to throw money at other people's problems or give money to good
causes. A low income plus low energy even limits our ability to make
ethical or environmental choices as consumers; we can't necessarily
afford to turn down the thermostat, buy Fair Trade undies or
self-righteously abstain from seasonable sales when the things we need become briefly affordable.
Then there's the fact
that what our culture holds up as especially virtuous is even more
inaccessible than the quiet good of doing the best for the people and
causes that matter to us. Ordinary people are always happy to put
their hand in their pocket for a good cause, but to be seen to be
good, you can't just ask around your kith and kin; you have to spend time, money and energy climbing mountains dressed as Spongebob Squarepants to raise just as much as you might have done rattling a tin*.
Beyond our diminished
ability to do good and especially to be seen to do good, experience
within a disablist society then gives us a hundred other reasons we
can't be good people. Friends and family members quietly shuffle out
of our lives, some employers behave absolutely hatefully, people make
jibes or well-meaning but tactless comments and both professional and
social invitations dry up.
In fiction, folks with
chronic illness are at best innocent victims, abused, cheated on,
heading off to Switzerland, the sweet but inconvenient relative who
hampers a protagonist's journey. Otherwise we are serial killers or embittered tyrants,
trying to control the world from a position of weakness and
deformity; our illnesses are metaphorical and often fake.
And then we get onto
politics. Campaigns against welfare and social care cuts are partly
about money, but if you listen carefully, what you hear more than
anything else, are protests of innocence. In order for what's been
happening to us to be in any way fair and just, we'd have to be a
complete bunch of bastards. I can say that casually, but it's very
difficult not to internalise at least some of the crap we hear from
politicians and in the media and in the wording of the letters and
assessments.
So while there might be
something natural about being less able to do stuff, needing greater
support from others and thus struggling with feelings of inadequacy,
this is a feeling enforced over and over again by capitalist
disablist society.
Thus even after we've
largely come to terms with ill health, I think a lot of us are still
busy bargaining for our souls.
Of course, something
people with chronic illness are pretty good at is suffering. Our
culture frequently confuses suffering for real virtues like hard-work
and patience - so much so that should one of us ever express the fear
that they are not a good person, we may well be informed that, of
course we're good - we've been through so much!
Suffering is not
entirely unrelated to virtue. Some Catholics with chronic illness
talk of offering up their suffering - they endure the pain and misery
of illness so that they or dead loved ones won't have to spend so
long in purgatory. It's not unreasonable to judge people favourably
who have endured suffering without becoming embittered or angry with
the world. Nelson Mandela was not a hero because he was imprisoned
for 27 years, but the fact he wasn't overflowing with hatred towards
the folks who put him there is an aspect of his heroic story
(although perhaps an overplayed aspect among those who like to see
heroes of anti-racism as supernaturally patient and peace-loving).
The goodness of those
who suffer is about resistance; not giving into
temptation, not being an arsehole about it, maintaining compassion
for others and so on. But suffering itself doesn't make us good.
Avoidable suffering is a complete waste of time and energy.
In my twenties, I used
to think that a certain zealousness about ethical and environmental
consumerism was fairly normal to my generation – not universal, but
common. Then I noticed that even though we'd all grown up with a
knowledge of climate change, animal welfare and workers rights, this
preoccupation was unique to those friends with chronic illness. It
wasn't like the others didn't care or weren't conscientiously engaged
(although some weren't), but I didn't know any healthy people who did
the sums about whether it was better to buy British tomatoes
grown in heated greenhouses or Spanish tomatoes than needed no extra
heat in their cultivation but had to be flown here from Spain.
If you set about trying
to manifest your personal goodness as a consumer, you've lost before
you start. All organisms consume – everything takes stuff from the
environment and uses it in order to live. In the absence of
tremendous physical energy, strength and anti-social tendencies,
humans are forced to live around other humans and source food,
shelter and warmth within the imperfect systems our species have
created. Folks can do good when they are wealthy enough to experiment
with the greenest new technologies - solar panels, electric cars,
zero carbon homes etc. - or when they have the power to confront or
change these systems.
Everything else is
about minimising the tiny wee flicker of harm an individual has to
contribute to the great fiery ball of harm our species is currently
causing to one another and our habitat. And yet of course, as long as you're alive, you can always reduce your consumption a little bit further.
Take the thermostat. I
have poor circulation and I don't move round much; I get cold and
cold makes my pain worse. And I don't go out much at all, so in the
winter I need to be in a heated home. For years, I was wearing four
or five layers, plus hat and gloves - restricting my movement, using
up my precious energy - in order to keep the thermostat as low as
possible. But of course, it could have gone lower. I could have put
on my coat and stay under the duvet all the time. It could have got
colder and I wouldn't have come to great harm - I would have merely
been less comfortable. I was suffering, but I was still
managing to destroy the planet.
I became obsessed with
toiletries – the plastic bottles; the bubbles and chemicals I was
sending down the drain. At one point, for quite a while, I didn't use
any cosmetic products apart from hand soap and toothpaste. I didn't
smell – I bathed as regularly as I could and wore clean clothes,
but I never felt clean and my hair looked awful all the time (some
people don't need to wash their hair in order for it to look clean
but some people really do). But toothpaste tubes - they're not
recyclable, are they? I was still generating waste.
What I did spend money
on was craft materials because I always intended to use them to make
things for other people (and I did, a lot, but of course, I managed
to accumulate a lot I hadn't used and felt guilty about that too).
I've written before about my angst around stuff and the fear that the
mere fact of having things I didn't desperately need was itself a
symptom of excessive consumption. I'm not the only person I have seen
that in and all my fellow travelers are chronically ill.
Being mature for his
age and an extremely empathetic listener, younger Stephen prided
himself on the word of praise he most often heard as a teenager and
young man; he was a rock. He listened to the problems of friends,
family and an abusive girlfriend, then he sought out other troubled
people and listened to them too. He joined mental health chatrooms in
order to listen to strangers rant and rave, express their violent
thoughts towards themselves, sometimes others and occasionally
himself. He was there to help people by listening, which was
something he was very good at - he wasn't getting off on other
people's misery. But when long and distressing conversations damaged
his own health - when helping others caused him suffering - he felt
he might not be such a bad person after all.
Having grown up (as I
did) on a history syllabus awash with graphic images of genocide and
torture (and not finding anything suspect about that), Stephen
believed that there was virtue to be found in being witness to the
suffering of others. Thus he sought out stories and videos of
terrible things happening, as if he could absorb some of the pain. "I
was already suffering," he says, "so it struck me that I
could always take on a bit more."
These days, Stephen
doesn't like to be called a rock because he says the thing people
like about rocks is that they are unyielding and unfeeling; a rock
isn't someone who can be hurt or exhausted by someone clinging onto
it, standing on top of it or kicking it repeatedly.
I get this because of
the dynamics of my own abusive marriage. There's a stereotype about
victims of domestic violence that they have martyr personalities -
that they somehow want to be hurt, so they can feel somehow ennobled
by the suffering. This is nonsense, mostly because it portrays
victims as people who are far more conscious of and in control of
these situations than they usually are. However, I did think that
putting up with the abuse somehow made me a less terrible person. Of
course, the abuse made me feel like a terrible person, so that's kind
of circular. But being able to forgive and forget (as I thought I was
doing) and keep caring for someone who had hurt me made me feel like
I was doing something good.
I guess it's all about
guilt again. The things people do to try to avoid feeling guilty
don't do any good to anyone. Often they make things worse; doing
things for other people in order to ease your own pain can make it a
lot harder to concentrate on what other people want and need. Guilt
consumes energy which you could be spending on anything else - like looking after yourself. It is possible to care for other people
without caring about oneself, but it is very much harder to do other
people any good if we don't first take care of ourselves.
We're told as children
not to compare ourselves to others, but when we live in a culture
which tells us the opposite half a
dozen times a day, we need to consciously resist the temptation - not
just in terms of whether or not we are good people, but whether we
are loveable, important, have adequate electronics and so forth.
According
to the Bible, Jesus said,
"Consider
the lilies how they grow: they toil not, they spin not; and yet I say
unto you, that Solomon in all his glory was not arrayed like one of
these."
What Jesus is saying
here is dress to impress. Select your pyjamas for both style and
comfort.
On a more serious if
surreal note, you are something of a lily, dear reader. Earlier on, I
said that many people find some sense of being a good person through
work because most work benefits others in some way. Well, right now -
although I'm writing this partly to organise my own thoughts - you are facilitating this effort, just by being there and
reading this, making it worthwhile. You don't have to lift a finger,
I might not know you at all, but I'm very grateful that you're there.
You are taking a positive part in the universe.
Ajax looking after Stephen
(a black toy poodle sits on the legs of a handsome reclining
white man with dark hair and glasses)
If JC had met any,
he might have also asked us to consider the poodles. When Stephen and
I lived with my in-laws and their toy poodles, Cassie and Ajax, the
six of us were a pack, each with our own role. Cassie and Ajax's
principle role was to be looked after; to be fed, taken for walks,
played with and let outside to toilet.
For much of the
time, Stephen's or my role was also to be looked after and the dogs helped with
that; if one of us was stuck in bed, they'd come to visit and sometimes sit
with us a while. During such times, none of us were useful, except
that we gave and received love. The dogs did and still provide
company, structure and purpose to my in-laws' day. Mum and Dad W are
both disabled pensioners but nevertheless busy people - it's not like
they'd fade away without the dogs to keep them going. But the dogs
are important.
Cassie looking after Stephen (a black toy poodle sits on the legs of a handsome reclining white man with dark hair and glasses)
The dogs also
provide something very special to their human companions. A pet
allows a person (with the capacity to look after it) the opportunity
to give another living creature a really good life; to increase the
sum of happiness in the world. Being someone to love is no bad thing.
And almost all of us are that to some people, even if they don't live
with and actively look after us.
There are some
elements of loss associated with impairment which will never go away.
Sometimes I get tearful when Bob Marley sings, "My feet is my only
carriage" because I mourn a time when I used to walk everywhere
and took that entirely for granted. I still fantasise about going for long walks without having consider wheelchair-suitable terrain. It's fine; I don't wake up each day resenting my
incapacity to walk very far, but if I've not stopped pining now, I
probably never will.
In the same way, the desire to do good and be useful are pretty basic
human inclinations. I genuinely believe that - people fail all the
time, prioritising other things or held back by some fear or other,
but I think most people want to do good and be useful.
So relative powerlessness is always going to hurt. The important
thing is to recognise that our supposed uselessness is very much
exaggerated by the disablist world we live in. Everyone is obliged to
do what they can and the contribution each individual makes is so
personal and nuanced that it can't - and should never - be compared
to that of others. If we are still involved in the lives of other
people in some way - even in a very passive way - if we love others
and let them know that - then we are doing what we can.
Today is Blogging Against Disablism 2016. Please head over to the main page to read other people's contributions.
Hopefully there is audio available for this blog post:
I like to think that after all
these years, I am supremely confident being a disabled person in public. By far
my most negative experiences as a disabled person have taken place behind closed doors. I know I
have all kinds of subtle and superficial things to my advantage and yet, I’m still self-conscious whenever I stand
up in public, or when I’m walking about in my garden. It would be ludicrous to avoid being seen on my feet lest I should confuse anyone who sees me in a wheelchair, but it's tempting. I'm conscious that I might be suspected of some kind of fakery, just because - like most wheelchair-users - I am not completely incapable of walking.
After decades of
struggle, disabled people have something of a protected status now; people
do still say outrageous things about us, but it’s generally accepted that
hatred towards disabled people is not okay. The darkest disablist rhetoric - that we are dangerous, degenerate and undeserving of life is most commonly reserved for fiction; newspaper style guides no longer use words like "cripple" or "psycho" but slip them in when talking about fictional characters.
But there’s a work-around: you can express hatred towards disabled people, so long as you claim that your victims are not really disabled.
It’s not just disablism that operates
this way - modern British racists tend to target Muslims, arguing that Islam is not a race, and Eastern Europeans, arguing that if their targets have pale skin, it can’t really be racism. It plays upon the
idea that belonging to a minority and not being abused is some kind of special privilege,
a special club with highly restrictive criteria, carefully policed in case everyone crowds in and demands not to be abused, harassed or discriminated against.
It is ridiculous, but it remains a powerful and pervasive
idea. In the struggle against increasingly negative government rhetoric, the
term genuinely disabled entered the vocabulary of disabled activists
themselves. Arguments began to be made which portrayed idealised disabled people as hard-working, long-suffering and thus deserving of accommodations and support which had previously been regarded as unconditional entitlements. Arguments became about compassion rather than rights.
........
Ten years ago, when I first
started Blogging Against Disablism Day, I had an e-mail exchange with someone
who described themselves as transabled. They felt they were paraplegic in a way fundamental to their identity, but they had no spinal injury . They wanted to take part
in BADD but expected I would forbid it. Taken aback, I didn’t handle it
brilliantly, but eventually concluded that BADD was open to everyone and anyway,
of course, this person was disabled; they had a mental health condition (a highly
stigmatised one at that) and any time they used a wheelchair – as they sometimes
did, as that was the most comfortable way for them to get around – they were subject to the same experiences as any other
wheelchair-user.
I've often thought about why traffic stops for me, a white thirty-something female wheelchair user, when Stephen, a white thirty-something male on a mobility scooter, has to wait much longer to cross the road. Gender is probably in the mix and I wear brighter clothes and am easier to notice, but it's fair to say that scooters carry a certain reputation. Scooters are popular among older disabled people whose disabled status is generally taken less seriously, as if older people have less need to exist and get around than younger people.
It’s also widely believed that
some people who use scooters are perhaps lazy. Of course, it makes precisely no difference why a person rides a scooter or uses a wheelchair, why a person walks with a stick or a
crutch or anything else. I
have serious doubts that anyone would use a mobility device, taking on all the
stares, remarks, the increased vulnerability and the slight but ever-present
risk of abuse or harassment, just in order to avoid walking unless the effort of walking was a very significant problem.
But what if they did? Why would it
matter? Can a ramp or an elevator only be justified if absolutely everyone who
rolls over it has an absolute and vital need to be sat down? Are content warnings only necessary for people with severe mental ill health? Should there only be subtitles on TV programmes that might be of some interest to deaf audiences?
.........
Apart from those with spinal cord injuries, everyone I know who has become a wheelchair user as an adult regrets
waiting so long. For my own part, I had been unable to leave my home for a
year. This happened twice: My walking improved for a while and I no longer needed a wheelchair, but when things deteriorated, despite my
past experience, I still held out another twelves months indoors.
Friends report similar resistance.
Part
of this is optimism or denial in the face of declining health - even doctors can be discouraging when people ask for wheelchairs - but part of it
is that oppressive idea of legitimacy. If you can walk a few steps – as the
vast majority of wheelchair users can – then maybe you can, somehow, get by
without one. If your walking might improve then maybe it is better to wait for that to happen. There's a sense that you have to fully deserve a wheelchair.
This same silly dance takes place
with benefit claims, Access To Work, getting a Blue Badge parking permit, sorting out accommodations
at college or work, asking for or accepting effective medication and buying any kind of kit or equipment associated with
disability.
For many people, the same thing happens with using the word disabled. Of course some people simply reject the word, but almost every Blogging Against Disablism Day, someone will confess that they're not exactly disabled, but have experienced this thing which seems very much like disability discrimination. People with mental illness - one of the most stigmatised groups of disabled people - seem to struggle with this more than others.
..........
This is all about power. To question
someone’s experience, especially a personal, painful and partly internal
experience is a power trip. And people get off on that, the sense
that they’ve caught someone out, stuck out their foot and tripped someone up. Stories about liars make good little tragedies; hubris, crisis, downfall. Last Blogging Against Disablism day was slightly marred by an anonymous troll on Becca's blog about the rich life she leads despite being unable to work. The troll's protest amounted to, “You’ve made your life look like too much fun; other people
will hate you for it.”
It’s important to remember that
ideas of legitimacy are all about power. It’s important to remember that for
our own sake when this stuff comes up. Questions raised can be very personal, but it’s never because
we, ourselves, come across as shifty or untrustworthy - it is because other
people want to exercise power over us. It’s also important to remember, so we can avoid slipping into this ourselves, talking of those who count or those who don’t count. Too many
disabled people find themselves caught up by the hierarchy of impairment, and resort
to dismissing those who have less power than themselves; those without a
diagnosis, those with other kinds of symptoms, those who live with greater stigma.
Meanwhile, we can do a lot about it. We can remove this power in the way we discuss disability, access and accommodation. We can reject terms and ideas which imply that some who use the language of disability are frivolous and fraudulant while others are legit. We can actively resist a culture which suggests we can gain acceptance by constantly explaining ourselves and our conditions. We can acknowledge disability as a social experience rather that a clinical category.
