Before Christmas, Julie did an interview with Ryan Tubridy. She spoke articulately about her life and mentioned her family and especially her brother Diarmuid. She talked about his wide and varied life and her own impending wedding.

The result was that Julie and Diarmuid were invited to film a piece with Ryan Tubridy for the Claire Byrne Live show. It would form part of a discussion about the Assisted Decision Making Bill that was recently passed.

GOOD POLICY IN PLACE

Over the years, I have been to the forefront of activation for rights of people with disabilities. I served many years on the Board of Inclusion Ireland. I am currently a board director of the Cope Foundation, which provides services to over 2,000 people.

I also sit on the HSE Transforming Lives (formerly Value for Money Implementation) Group. It is fair to say that, in Ireland, at this point in time, we have put in place several good policy documents to make sure that vulnerable people will be kept safe, happy and have a good quality of life.

It is all written down in the National Disability Strategy that was introduced in 2004. More detailed policies within this strategy include “Moving on from Congregated Settings”, “New Directions” and several others. They can all be accessed on the HSE website.

It’s one thing to have policy – it is quite another to give life to that policy. For the individuals and the families, the “putting into practice” is taking far too long.

I believe that the constant promotion of a good life for people with disabilities must be to the forefront of our minds. It must not be confined to those who have disabilities, family members or those who work in the area of service provision. In teaching and working with people with intellectual disability, preservation of an individual’s dignity comes absolutely first.

When I talk to students who visit our school, the first thing I say to them is: “Dignity, dignity, dignity.” In fact, it is not a bad mantra for all of us to have in our dealings with everyone we encounter.

A VALUED LIFE

Julie and David’s wedding took place on New Year’s Day. A few days later they went off on honeymoon. The date for the Claire Byrne show was set for 25 January. Julie would be back and she and Diarmuid would travel to RTÉ for the show.

Alas, the weather got in the way. Huge snowfalls in the US meant that the couple got stuck in Newark airport overnight and Julie could not make the show. Instead, Tim and I travelled with Diarmuid. He was so excited about seeing himself on the TV. It’s one of the things I love most about Diarmuid. His sense of self is absolute. He’s never worried about what he’s wearing or if he might say the wrong thing. The rest of us make life far more difficult than it should be.

Tim, Diarmuid and I chose the photographs that we would send to represent Diarmuid’s wide and varied life of farming, family, drama, attending college and so on. He was so proud of those photographs, especially the one of him reading at Julie’s wedding and rolling out big bales. He beds three big sheds most days. One of the lads drops the bales with the loader and Diarmuid takes it from there.

He is a real asset and worthwhile contributor to the work on our farm. As the pictures flashed up behind Claire Byrne, Diarmuid’s smile broadened. This was the message that we were anxious to portray. Diarmuid is enabled by his family, his community and disability services to lead a wide and valued life.

THE BILL

When Claire Byrne came to me with what I considered a very negative question, I was shocked. I should have answered by telling her so. Instead, I felt like a politician trying to turn it around.

This is a hugely positive step for all of us. Most people need help with decision making at some point in their lives. Now the mechanisms have to be put in place to guarantee the dignity of decision making through this bill. There is credit due to Minister Kathleen Lynch TD for continuing to push this bill through and to keep at it to the eleventh hour. The O’Leary’s welcome it wholeheartedly.

The guiding principles ensure that there is a presumption of capacity unless the contrary is shown. No intervention will take place unless it is necessary. Any act done or decision made under the bill must be done in a way which is least restrictive of a person’s rights and must give effect to the person’s preferences. There will be people to assist the process of decision making where necessary. It also paves the way for Ireland to ratify the UN Convention for Persons with Disabilities.

Of course, there are deficits and the bill could have gone further, but that’s for another day. For now, it is good news.

After the Claire Byrne Live show, Tim drove from Dublin and Diarmuid snored all the way home. In his mind, the job was well done. He looked forward to showing the programme to Julie. Already, he has watched it with his UCC class, his drama group in Cope Foundation and his art class. Of course, he never tires of it.

Pride in one’s life and activities is indeed a gift. Our goal, as a family, is to make sure that Diarmuid continues to have valued roles. Each of us must lead by example and have pride in our own valued roles.