No more reports on intellectual disability — it’s time to finally act after Aras Attracta

How can we take to the streets to fight for water charges but not to support Áras Attracta residents, asks Fergus Finlay.

WHO will march for Ivy McGinty? Or Mary Garvan? Or Mary Maloney? Or the hundreds of other Ivys and Marys who live lives of seclusion, trapped in a system in which they have no rights, no voice, nobody to speak for them? Or march for them?

How is it possible that up to 100,000 of us are willing to protest about a tiny charge to fix a broken water system, but nobody can be bothered to march for the most defenceless people in Ireland? How can we get so angry over things that aren’t going to destroy anyone’s life, and yet we can watch frail, elderly women being pushed and verbally abused in a public service and not march on Dáil Éireann? How can we be so triumphant about bringing the Government to its knees over water, and yet there are no banners for Ivy or the two Marys?

Once, years ago, when anger over broken promises on disability was at its height, we filled the Mansion House. Maybe 800 people with an intellectual disability and their families. That was the biggest disability protest I ever saw. It sort of worked at the time — a draft bill was withdrawn and a new one promised. The new one was, of course, a travesty — I’ll come back to that.

Protests don’t have to be big to be effective. A couple of years ago, a tiny group of people with physical disabilities decided to sit all night, in bitterly cold weather, outside Government Buildings in protest against another in the series of austerity cuts. The cut was reversed.

We don’t need more investigations into scandals such as Áras Attracta. We need action, and if not action, protest.

Why don’t we need another investigation? When Barry O’Kelly, the reporter who made the Prime Time programme, was investigating the issue, he came across a painting made by my wife. It hangs in the offices of Inclusion Ireland, and it’s called Gathering Dust. It’s a painting of all the reports written over the years into intellectual disability — what’s wrong, how to do it better, how to implement change. Lots of reports, covered in cobwebs.

He asked Frieda, my wife, if she still had all the reports she had painted, and she gathered them together so they could be filmed for use in the programme. They filled two crates. RTÉ collected them, even though I presume they decided they already had enough material to make their point, and they weren’t used in the end.

Two crates of reports on how to do it right, and still we have Áras Attracta. That’s because we simply never implemented them. We have codded ourselves for years that somehow or other we have given intellectual disability the priority it deserves, on the most basic moral grounds.

Here’s what we need to do. No more reports, just simple actions. There’s a damaging and dangerous culture in too many services for people with intellectual disabilities. At the heart of that culture lies a distorted power relationship. We’re the service providers, we know best. You’re the service users (or whatever other label is applied) you take whatever we can offer. Apply a label — service-user, client, patient, or a more depersonalising label, such as moderate or severe — and pretty soon you can stop thinking of people as people.

Start by changing the law. We have a Disability Act. Described by its proponents when it was enacted as groundbreaking, it’s a complete sham and travesty. While it was spun as rights legislation, the word “rights” doesn’t appear once in its 52 pages. In the nearly 10 years since it was enacted, not one person has ever been able to take an action under the act, nor seen their conditions improve as a result of its being there.

It should be torn up and started all over again. The vested interests, who are always terrified that anyone might acquire a right to have some public resources spent on them, won’t let that happen (not unless 100,000 people march, anyway.)

But how could they say no to a provision in law that said that any person living in and dependent on facilities provided by or funded by the State shall have an absolute right to be treated with respect and dignity, and that the care provided to them shall be of the highest standard possible? And that it shall be an offence to deny all such persons the respect and dignity to which they are entitled?

The inclusion of a simple measure like that would begin to transform the culture that operates in too many of these services.

That power relationship is further distorted by money. We don’t, in all probability, need to spend more money on services for people with intellectual disability. But we need to spend it entirely transparently. It is impossible, if you’re related to a person with an intellectual disability, to find out how much the State allocates to his or her service provider. I’ve tried and failed.

But oddly enough, if the system set out to ensure that “money followed the person”, as has been recommended many times, not only would there be far more transparency and less waste, but that too would radically change the power balance.

Change the law, and change the financial structures. Then, proper training. There are a number of programmes in place (for the avoidance of conflict, let me say that my wife is involved with one of them) that set out to improve the capacity of parents and staff together, seeking to turn them from adversaries to allies, and enabling families to plan better futures for their children. These courses are hugely effective and very popular, and enable families to have much more influence on the future. Naturally, they’re barely funded.

But even with all that, there must be a single point of advocacy and a single point of redress. Organisations such as Inclusion Ireland and Down Syndrome Ireland live hand to mouth, trying to manage their advocacy work on a shoestring. It would cost virtually nothing to bring them together around the idea of a proper independent advocacy service that was guaranteed full rights of access.

On the complaints side, it’s simply crazy that Ombudsmen, HIQA, the HSE, and other bodies like the Human Rights Commission can’t be pulled together into a room and told to design a complaints and investigation procedure that is genuinely protective and open, and that enables complaints not just to be taken seriously, but to be appropriately channelled. Of course there’d be a surge in complaints in the early days of a decent system, but that would level off as proper investigation began to lead to higher standards.

These are neither complicated nor expensive actions. In fact, if the political will existed to challenge the vast empires that exist in some parts of the country in the name of service provision, there are millions to be saved in duplicated services and in management and administration.

But the real issue is that we allow the Áras Attractas of this world to exist, and ultimately to shame us. We can stop it. Not by enquiring, but by acting.