Disability is a full- time job

I’ve just seen a very thought provoking thread on a topic I have been mulling over for a while- “Disabled people are lazy.”

I’m not talking about the Government spin on “getting us back to work” or even Rod Liddle’s infamous articles in the Sun,  but about campaigners that complain that they are ‘doing all the work’ while others sit idle. This theme is becoming so depressingly familiar in ‘disability rights’ circles that I’m beginning to wonder whether Lord Freud’s ethic is finally getting through to us and we are really beginning to believe that we disabled people really do ‘do nothing all day’.

A number of ‘campaigners’ speaking for disabled people seem to feel that they are being let down by those who are also ill but are ‘choosing’ not to help.  I’m sure so no personal attack on any individual is usually intended and that stress and fatigue is a contributing factor to the odd irritable comment, but I’m sure I am not the only campaigner who feels that this kind of comment from another disabled or sick person is distressingly like the Government rhetoric.

For those of us who remember working hard at school and yet never getting the grades the teachers (or our parents) wanted there is a sense that once again we are being told, ‘Listen up you slackers, yes, you, 4B. Sit UP straight Daniel Jones, I’m _talking to YOU_’.

Once disabled people could be proud of whatever they could do from basket making to legal work.  Are we now to have ‘prizes for those who do the most campaigning?  In our society disability already carries with it mixture of shame and frustration.  While there are those who may seem to others not to be putting their shoulder to the wheel, it is painful for many who would LIKE to do more to be told they are ‘doing nothing’. If we are ALL ill, then we all also know what it feels like to be told by the State, the next door neighbour, or the ‘friend’ that we are ‘doing nothing all day’, so to hear anything that sounds like that accusation from the lips of other campaigners is surely the grossest hypocrisy.

Never before did I realise that two speeches from history that I took for granted as good stirring stuff, Shakespeare’s ‘St Crispin’s Day’ speech and Churchill’s “Never in the field of human conflict” begin to have echoes of the ‘You aren’t trying hard enough’ and that feeling when hard work is returned as ”one out of ten’.  Any disabled person is IN the fight by virtue of simply being there, and though others may be dropping from exhaustion, others were worn out by  years of fighting for rights without the benefit of ‘groups’ or online networks.  Anyone disabled has a full time job on their hands and should not be derided for ‘doing nothing’.

Yes, folk that are burning the candle at both ends shouldn’t be having to, but the folk who already have nothing LEFT to burn shouldn’t feel guilty. We are all sick or disabled but some DO have more to burn than others and NO-ONE is helped by burning out.

If a disability rights campaign is based how much  is done by any individual, where is the woman whose achievement it is to walk ‘a few’ steps for charity on her walking frame, yet who does so in agony with profound cerebral palsy. Is she only to be praised if she raises hundreds of pounds for a school for disabled pupils in dire need of funds and where does that leave the girl who at 25 has never been able to thank her father for his ceaseless love and his fight to keep doctors from starving her to death because she cannot speak or move. Is to be so loved that others will give their lives to keep you alive to be a failure because you do not ‘do’ anything?

Achievement is the carer who spends all day cooking, cleaning and organising so that that a disabled writer can type articles.  Achievement is a deaf woman who shone such a light on the process of living with a disability for ONE OTHER WOMAN that she enabled her to keep coming back to campaigning despite the back-biting, the accusations and the blatant discrimination towards particular disabilities.

Disability is doing more than is asked and being told it is not enough, taking on 20 hour days and still being called a failure, so to even use the words, ‘What have you done?’ within the disabled community is totally out of touch with not only the reality of disabilities and their effects on daily living  but also with the ethics we are fighting for, that doing the impossible is not always right.  Sometimes those who do the most work are beavering away in the background.  Sometimes the ones who keep others courage alive are those who post n encouraging P.M. for a friend when they themselves suicidal.  There are no laurels for staying up ’til 3 a.m nor for giving away your own benefit payments to ensure others do not starve when their ESA is stopped.

The idea that to struggle with the personal issues is not as important as to struggle with the ’cause’ publicly is best put to bed by an unpublished quote from Emily Wilding Davison:

“The sacrifice varies according to circumstance. It may be loss of livelihood, position, wealth, friends, relatives and, not least common,loss of health or even possibly life itself.” (The Northumbrian, 88, Oct-Nov 05)

Someone once said to me, “Well, you’re not really committed are you?” because I’d paraphrased Martin Luther’s quote,” [Here I stand] I can do no other’. Just because you could do nothing else in all conscience doesn’t mean you don’t WANT to be there too. Nor that you CAN do it every day. Good luck and blessings to you.if you are in this fight at all. Disabled, or carer or supporter, you can say with pride that you have scars.

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