When all we want to hear is GOOD News!

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’!