Meeting the Queen

by Fergus Finlay

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During the recent Royal visit, my daughter Mandy met the Queen. What’s more, they had a brief chat about Special Olympics, before Mandy told Her Majesty that she loved her hat. By the way, I got to meet the Queen too. I was Mandy’s escort on the occasion, but it was Mandy who got the invitation. She was there to represent people with an intellectual disability, because Mandy has Down Syndrome.

A week or so after that, Mandy was in the front row of the Late Late Show. The intention was that Ryan Tubridy would come over and ask her some questions about a painting she has done.

Mandy was going to use the opportunity to promote Inclusion Ireland’s 50th Anniversary National Art competition. If the chance arose, she and her mum Frieda (who was sitting beside her) were going to talk about the difference between the hard campaigning that Inclusion Ireland does, and the celebration of ability that they are organising throughout this special year.

Unfortunately, it was the last show of the current season, and a pretty packed one. So Ryan never came over — Mandy was furious, even though she came home laden down with great stuff from the ‘one for everyone in the audience’ tradition of the show.

Why am I telling you all this? There’s a simple reason. Mandy, like most of her friends and most people of her age I know with an intellectual disability, has considerable capacity. I wouldn’t have got to meet the Queen without Mandy, and Frieda wouldn’t have got to the Late Late without her. And Mandy more than held her own on both occasions (after she had given Ryan Tubridy a piece of her mind, I don’t think he’ll pass over her again!).

Mandy lives with a group of her peers in a cluster of apartments. They’re all close friends, even though gossip can get in the way sometimes. They’re all independent. They do their own housekeeping and shopping. They vote in elections (and believe me, they’re pretty independent minded—I can never assume they’ll vote the way I might want them to!). They hold down jobs. They argue, they have strong relationships, they fall in and out of love. They travel independently, and in some cases have travelled the length and breadth of the country on their own—sometimes further afield. They even, most of them, like a pint—and they love nothing better than a party.

But in the eyes of the law, Mandy, and all her friends, are lunatics. I’m no expert on the law, so I’m relying on Inclusion Ireland’s expert analysis. They’re petitioning the government right now because of the way Ireland continues to flout the UN Convention on the Rights of Persons with Disabilities. Even though Ireland was one of the first countries to sign it.

Guggi, Mandy Finlay and Deirdre Carroll at the launch of Inclusion Ireland’s 50th Anniversary National Art Competition

In their petition, Inclusion Ireland points out that one of the central areas of the Convention is Article 12, Equal Recognition and Capacity on an equal basis with others. This relates to the right to make decisions.

Adults have the right to make decisions about their lives— for example to accept or refuse medical treatment, to deal with their property and money and to have consenting sexual relationships. People with an intellectual disability have the same rights to self-determination and autonomy as everybody else. However, they may not have the capacity to make certain decisions, or to communicate their decisions. So they may need help or support in reaching decisions—especially the bigger, life-changing ones. In Ireland the support they get is the so-called Wardship procedure—and that has been in place since 1871. And the procedure is based on something called the Lunacy Regulations (Ireland) Act 1871.

So, for the last 140 years, as if stuck in a complete time-warp where nothing ever changed, a person who is unable to manage his or her own affairs can be made a Ward of Court. And it doesn’t matter if they can manage most of their affairs. If there is one big decision they need to understand better and to cope with—like the decision to undergo dangerous surgery, for example—the assumption is that the decision has to be made for them. Not by them, or with them, but for them.

On the one hand, we want and expect people with an intellectual disability to live as independent a life as possible. We want them to take on as many adult responsibilities as possible. We want them to grow and develop so they can stand on their own two feet. We’re as proud as punch when they do—when they stand up and address a meeting, or take part in a play, or represent their country in the Special Olympics.

But if they face a big decision—especially, God help us, a decision involving money or sex—we immediately want to take away all that adulthood. The law obliges us to treat adults like children, incapable of considering the alternatives or teasing out anything difficult.

People with an intellectual disability are citizens; they’re supposed to be full and equal citizens. But if you’re made a Ward of Court you can’t have a bank account, you can’t get married, you can’t defend or initiate legal proceedings, you can’t buy property or even move home, without the permission of the High Court. There is no other citizen to whom restrictions like that apply. Even people convicted of serious crimes have rights that are essentially denied to Wards of Court.

There’s all sorts of arguments these days about cutbacks and the cost of providing services. The country is broke, and can’t afford to insist on decent standards of care. But it actually doesn’t cost anything at all to respect people, and to treat adults as adults.

That’s why Inclusion Ireland, as the leading advocacy organisation for people with an intellectual disability, have an unanswerable case when they demand modern and progressive capacity legislation. Such legislation must be founded on proper definitions of capacity, proper ways of measuring it, and proper ways of supporting people who have less than full capacity.

Perhaps nothing illustrates this need better than a story many of us know. I don’t want to use her real name, but Mary is twenty. She has Down Syndrome and she is bright as a button. A few years ago, she was allegedly sexually assaulted. Despite her own sense of horror at what had happened, Mary knew she had done no wrong. She was determined to tell her story, and she did, honestly and always consistently. First to her family, then to the guards, then to lawyers, and finally to a judge. Bravely, clearly, and in necessary detail.

And the judge decided she wasn’t competent to tell her story to a jury. He decided this after submitting her to a test of her ability, in court, with the assistance of the prosecution lawyers. Mary’s family was ordered out of the court for the duration of the test, although the person accused of assaulting her, together with his lawyers, remained behind and watched Mary answer questions.

I know it was a difficult decision for the judge, and that he did it reluctantly. Perhaps he had in mind that if Mary did go on to give her evidence, no matter how bravely or truthfully, she would be subjected to cross-.examination at the hands of a skilled lawyer. The judge would know how additionally traumatic that could be.

So the only person judged in a horrible case of sexual assault was the young woman who suffered the alleged assault. She was judged and found wanting, because she has Down Syndrome. And so there was no trial, no jury, no case for and against, no conviction, no acquittal. In the absence of all those things, there was one other thing missing. There was no justice. There couldn’t be.

And there won’t be, until we recognise that people with intellectual disabilities are citizens of our country too. They have a right to respect, and to be properly heard. Justice demands nothing less.

Since June 2005 Fergus Finlay has been Chief Executive of Barnardos, Ireland’s largest children’s charity. For around twenty years prior to that he was employed as Senior Adviser to the Labour Party, serving in three governments and working for the party in opposition. He was one of the drafters of the Downing Street Declaration and was centrally involved in the election of President Mary Robinson in 1990- He also served for three years as a Director of Wilson Hartnell Public Relations.
Fergus Finlay is the author of four best.selling books. He has founded a number of organisations that campaign for the rights of people with disabilities, and was Chairperson of Special Olympics Ireland for four years. He is currently Chair of Volunteering Ireland. He broadcasts regularly on radio and television, and contributes a weekly column to the Irish Examiner. In June 2011 he put himself forward to the Labour Party as a candidate in the next Presidential election.

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