Wednesday 13 November 2019

Brendan O'Connor: The disabled should not be seen as a soft target

Cuts fall not on those who can best bear them, but those who the Government thinks will cause the least hassle, writes Brendan O'Connor

One of the people with disabilities protesting outside the Dail last week had a sign saying "rights not charity". And more than any of the other many things that have been said about cuts to people with disabilities this past week, that sign perhaps summed up the whole argument.



How would you feel if the Government denied you any of the choices that most of us get to make every day? What if you were denied the right to choose to have a shower, to leave the house, to go to work, to go to the shops, to do any of the things that you take for granted? You'd go mad, wouldn't you? And your supporters and well wishers would take it to the European Court of Human Rights. And Amnesty would be involved, and there would be widespread shock and horror that a so-called civilised country like Ireland was denying an innocent citizen his right to choose what he wanted to do.

But somehow, if you have a disability, these rights can be summarily denied to you, because they cost money, and are more difficult to afford to you. Therefore, they are regarded by some people as charity, as something that can be taken back if needed, as something that we give at our pleasure.

For people with disabilities, the kind of rights that most people take for granted are apparently a luxury, and we can't afford such luxuries now because 70 per cent to 80 per cent of the health budget is ring-fenced, so people with disabilities are the dispensable ones. Because, whether you like this or not, and it is a horrible thing to say, but people with disabilities tend to be regarded by many people as being less than full people. This is particularly true of people with intellectual disabilities. They are not regarded as complete people, people who should get to make the same choices and have the same rights as the rest of us.

In many ways, what we saw last week was how the rights of people with disabilities are, in a sense, the last great civil rights battle to be fought. Routinely, people with disabilities are forced to live in situations that they do not or would not choose to live in, with people they may not want to live with. The view is presumably that they should be glad to be 'looked after' at all and that the system requires that they live and learn and work in these environments. If you tried to corral unemployed people, or anyone else, into a similar system for the sake of saving money, there'd be holy war. The unemployed, like most employed people, are dignified with individuality in this country.

I was talking to Colm O'Sullivan about the rights of people with disabilities during the week. Colm is the chair of the National Parents' and Siblings' Alliance, sits on the board of Down Syndrome Cork and has a young lad with Down Syndrome. Colm pointed out that if you are an adult and you commit a crime and if you go to prison, there is an independent visiting committee to make sure that your rights are not being breached.

But if you are an adult with an intellectual disability who is living in residential care, there is no independent body that is allowed to check up on you or your conditions. Even Hiqa doesn't do it.

Hiqa can examine the conditions in nursing homes but somehow, when it comes to the disabled, the people least likely to feel they can speak out about their conditions -- because of course, they and their families are made to feel grateful that they have 'a place' -- Hiqa does not keep an eye on the facilities. This lack of quality control is not regarded as acceptable for old people, and it would not be regarded as acceptable for anyone else. But it's OK for the disabled. Charity. Not rights.

The reason I say disabled people tend to be grateful to have a place in residential care or even in a day scheme is because even if a person badly needs a place in that system, there is no guarantee that you will get one. We all saw the situation this summer, where people with severe disabilities who were finishing up in school were told point blank that there were no places for them, that they would just have to stay at home. All day, every day, with their parents -- if they were lucky enough to have parents.

People who could only look on in envy as able-bodied children left school and went off into college and other courses, with dreams to fulfil and their whole lives ahead of them, were told there was nowhere for them to go to try and have some semblance of a life. And remember that the parents of those kids might not be getting any younger and, in the case of a child with an intellectual disability, can't even leave them anything in their will, without making them a ward of the court.

Colm O'Sullivan was telling me how some parts of the country have come up with a unique system to deal with the lack of places for school leavers with disabilities. In one area they have given every school leaver a place in a service but they have cut the number of days from five to three. Imagine, he says, if Fas, in order to allow for new apprentices, cut your child's apprenticeship from five days a week to three and gave the other two days to someone else. "There'd be war," he says bluntly.

And do you think for a second that what any parent would wish for their child, or what any child would wish for themselves, would be to be begging for a place in a "service" at 18? That moment is possibly the saddest in the lives of many people with disabilities and their families, when childhood is over and all their peers move on and start new lives. And the best they can hope for is to get into a special campus where they will spend their days, a place where, as the National Parents' and Siblings' Alliance say, they are virtually surrounded by an invisible barrier that keeps people away from them.

Is it not hard enough that this is what they must resign themselves to and make do with, without the Government denying them even that modest ambition? And all because Government is unwilling or unable to make cuts elsewhere, to much more fortunate people, people who enjoy the same rights the rest of us do.

People with disabilities in Ireland don't have a very good quality of life. They have little control over their lives, they are often continuously supervised, they are often isolated from their non-disabled peers and they are not accorded the same status in society as the rest of us. Much of that is because people with disabilities are often expected to be grouped into situations with others because this is the most cost-effective way of "looking after" them. In other words, the quality of life of people with disabilities is not determined by their needs or their rights but by the needs of the system.

Many of the people who were outside the Dail last week were people who triumphed over that system, who managed to carve out a decent life for themselves, who manage to contribute to society, overcoming massive obstacles along the way, with the help of their assistants and others.

And whatever deluded bullshit James Reilly was talking on Prime Time the other night, there was an intention to steal that away from them, if the Government could have got away with it. And the Government thought they might get away with it because those people have no Croke Park deal, no powerful union, no clout.

The Government thought this was a cut that wouldn't cause any hassle from morally bankrupt unions, or representatives of the unemployed or anyone else. And they possibly thought that it would be too mammoth a task for the disabled to organise to come from all over the country to protest.

But enough people with disabilities to shame the Government did manage to fight back, for now. It is a victory for people with personal assistants, but not for the disabled in general. People with disabilities in residential or day care will now feel the brunt of those cuts instead.

None of those people outside Leinster House was in any doubt that this was a short-lived reprieve. And that Reilly will be after them, and their one chance at a life, in three months' time. Because that is the barbaric country we live in now, where cuts fall not on those who can bear them most, but on those whom the Government thinks will cause least hassle.

Hopefully, the Government is rethinking the notion that the disabled are a soft target. Certainly, it's not easy for them to make it to Leinster House to protest. But their motivation is stronger than most. And they're used to doing things that don't come as easily to the rest of us. Of all those who have ever gathered and protested, the people who sang We Shall Overcome outside Leinster House the other night had perhaps the most claim to that song.

Sunday Independent

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