When all we want to
hear is GOOD News!
Failures of Disability Activism in
Ireland, no ‘army of discontent’
This was NOT
a ‘good news’ week for me. But as a
disabled/sick woman I am not allowed to complain. Not allowed to express what people may perceive
as ‘negativity’, ‘moaning’, or ‘self-pity’.
I suspect as
we all suffer in some shape or form ‘austerity’ politics, all read daily of the
misery of ‘austerity’ from homelessness, cut medical cards, increase in a range
of ‘taxes’, sick people not getting treatment; that if I ‘complain’ I’m seen as
‘the woman who thinks she’s the only one
suffering’. There is reality in that, I know I’m not the only one,
yet when personal is so painful I’d like to know someone will listen.
But in
expressing the truth, the frustration and the injustices of health care and
community non-provision to myself and twin sister I’m seen as the sick person
who is not ‘Brave’, ‘stoical’ or the person who on dying they might write “she never complained”. Well there’s no chance of this latter comment
being etched on my gravestone. I will, no doubt go down as the ‘grumpy
sick/disabled witch’ who reminded people too often of a) their own suffering
(fellow sick/disabled people) and b) reminded ‘well’ people of their guilt and
collusion in doing nothing to make sick/disabled people’s lives better and c)
reminded HSE professionals of their own complicity in creating suffering on
those they profess to ‘care’ for, but mostly d) for placing full responsibility
for the ‘chaos’ of my life, and other disabled/sick people’s lives, at the Dail
gate! (Particularly Minister Kathleen Lynch who ignores everything I send to
her and her secretary who does a marvellous job of not allowing me within
earshot of her).
This is
where the collective national plot has been lost! Too many acquiesce – stay silent – or
‘bravely bear their sickness/disability’ towards sainthood and admiration. Or
else they take on the ‘brave-quiet’ persona, so much applauded.
Is this why
the Irish Wheelchair Association sells angels when fund raising? Is this why
more and more fund-raising is based on ‘look at those poor sick/disabled
people’ rather than challenging policies that create our hardship in the first
place. It is far easier to see us as
pathetic ‘poor’ miserable creatures than vilify a government hell bent on
creating suicidal sick and disabled people.
It serves
non-disabled people well to put us in the ‘brave’ box rather than the
‘agitator-fighter-complainer’ box. I
know the box I’d rather be in.
That’s the box
I inhabited this week after a totally and utterly futile visit to my
consultant. Who was more intent on
writing facts in my file than listening to my daily living ‘gripes’. Who;
basically, is not able to have a CONVERSATION about the complex issues I
face. Who was it who said only women can
‘multi-task’? Well I went in with the
‘multi-task’ and all he wanted was singular tasks. If my bowels don’t work take
lactulose and stop the morphine!
Simple. Er well, not that simple.
I need the Morphine and lactulose will not help a bowel that, due to
neurological/mitochondrial disease, no longer has peristalsis. Oh and what do I do about the medication
(which I need for parkinsonism) that lowers my blood pressure to such an extent
that I recently landed in hospital on monitors for 24 hours? That didn’t get
discussed. Why? Because I forgot! In the
multi-tasking of dealing with mitochondrial disease, muscle myopathy,
parkinsonism, dystonia, walking, sleeping, pain, foot inversion, nightmares,
night time tinnitus; (sounding like a huge extractor fan, which keeps me awake),
urinary incontinence and just a few more things too, I forgot! All which needed to be addressed in my 6 month
visit of less than 10 minutes, yes I slipped up.
This
consultant (public) was on a fast moving train and I couldn’t get on it! My train was slower and he couldn’t get on
mine! (or wouldn’t). We both went
through the station on different tracks. Consequently I left with NOTHING
addressed, but he had it all written on the file. That was important. I came
out depressed as hell, feeling not heard, only a number on the seat of his fast
moving train. There was no passenger there at all.
A few days
later the HSE OT department refused my request to move my hospital bed from a
front room to a back room so that I could be in a room where I could open
windows for air in summer. After over a year battling for a suitable powered
wheelchair for self and twin (we have the same rare disease) which as yet is not forthcoming, refusing this
‘minor’ request (and I thought not too onerous a job), was a blow too much.
This was to
push me over the edge. It was but a simple request and as a 61 year old single
woman, with no family support, how was I to dismantle a specialised electric
bed and move it? It seemed insurmountable – the last straw. Why do they make it
so hard I cried? I was weary and very tired.
Then I
decided (totally bad idea, and will never be repeated) to express all my
frustration on my local village facebook forum.
Of course I should have known
better…that the affluent village I live in only wanted ‘happy/brave/sick/disabled
people’ whom they could patronise in fundraising events. I was lynched. Apparently I was always
moaning, always criticising, always self-pitying. I refute that entirely, I
raise disability issues as an activist but in this village disability equality
is simply not on the agenda. I had discomforted them.
The local
lynch mob comprised three people, but their vile comments were ‘liked’ by seven
more. None of these people know me, nor I them…their vicious words had me
weeping all day and night. None knew the battles I was having with my body, my
doctors, or my alleged HSE ‘helping’ ‘professionals’.
They didn’t
know how depressed I was that day or the accumulated frustrations that had
reached a despairing pitch of anguish and they didn’t care. I now understand why teenagers are suicidal,
or commit suicide when ‘trolls’ target them. It’s a vicious medium facebook. I
was so distressed I rang the Samaritans at 2.30am suicidal and weeping.
Now on
reflection I realise it was naïve to think a village facebook forum would offer
kind supportive words when all people really want is the ‘heroic’ disabled
person, carrying on life as if not a care in the world. A hero who local people
are proud to have in their midst, not a miserable git like me!
A hero who
will make non-disabled people feel comfortable in their role as helper to those
‘poor
disabled ‘heroic’ people’ for whom we can raise funds for’.
Sad fact is,
disabled people have colluded with this ‘hero’ persona by silence.
‘Activism’
is not political in the sense of ‘in your face outrage’ about the plight of
hundreds of suffering disabled people.
‘Activism’ is polite, careful, conciliatory and democratic’. One big
demo does not make a movement of disabled people’s
voices; ‘enough is enough’ which can be demonstrated daily or weekly in the
media. Instead disabled/sick
‘complainers’ like me; are targeted by vicious trolls as ‘moaners’ and
‘self-pitying’. I am not the grateful!
If disabled
activism was a high profile event, my ‘complaints’ would have been seen as
political, not personal, or where the personal IS political. But in that void all ‘complaints’ are
therefore seen as ‘moaning’.
No, we have,
and I blame disabled people just as much as non-disabled people, become the
‘hero’s’ and the ‘brave’ and fallen victim to the pressure to acquiesce rather
than to charge forth and raise the army of ‘discontent’. This is facilitated by our ‘charities’ who
fearful of losing funding are ‘careful’ how they protest and in ‘carefulness’
collude and fail to represent the reality. Even worse squander money meant to
help us on senior employee salaries, and employ relatives and friends, making a
cosy little network on the backs of our suffering. Even worse reduce us to the
‘cripple’ needing funds rather than the ‘cripple’ crippled by society and
government!
This has led
to professionals who are apathetic, disheartened or comfy, and a public apathy
where looking after no 1 takes priority over sick or disabled people. There is anger towards us, subliminally
‘blamed’ for requiring benefits or medical cards, increasingly portrayed and perceived
in the media as ‘drains on the economy’. This provides ‘permission’ for
government and the HSE to cut with impunity most community services. After all,
we ‘cripples’ do not advance society, no we impede it.
This all happens
because disabled/sick people do not
stop it, (nor anyone else) and with no ‘disabled army’ of discontent,
people like me are vilified, locally and nationally for sharing the pain of
oppression in a political system of oppression.
This is all satisfactory
for the majority of the well/’able’ population, who will not rise against this
political oppression of disabled people, and disabled people have lost the fight
to mobilise a force for radical discontent in a country where ‘oppression’ has
become the political norm.
Dr Margaret
Kennedy PhD
Disabled, disability activist, political
‘complainer’!
