My son, Diarmuid travelled to Dublin last Wednesday with a group from Horizons, formerly Cope Foundation, to view a video that he and others were involved in making.

The reason for the video is to help people to understand the UNCRPD, the United Nation’s Convention on the Rights of Persons with Disabilities. Ireland ratified this convention in March 2018, agreeing to be bound by its provisions which included a commitment to implement domestic laws, policies, and practices to ensure the rights of people with disabilities are respected, protected, and fulfilled.

Self-advocate

The National Platform of Self Advocates organised the making of the video with people supported by Horizons in Cork. Diarmuid speaks for himself. He is a self- advocate. Sometimes he needs support to do that.

The National Platform is an independent self-advocacy organisation run by people with intellectual disabilities. It’s aim is to make sure that the voices of people with intellectual disability are heard and that their issues of concern remain on the political agenda. They have a background support committee to enable them. Other advocacy organisations promote the interests of people with additional needs and do not necessarily have self-advocates on their boards or committees.

Diarmuid loves to be involved in these kind of projects, especially if it means he’s in front of a camera. It is fair to say that this participation would not be possible without the team of support workers from Horizons. Daragh Forde is the advocacy officer with Horizons and it was she who asked Diarmuid to be involved.

It’s aim is to make sure that the voices of people with intellectual disability are heard and that their issues of concern remain on the political agenda

Julie, Diarmuid’s sister took on the job of helping Diarmuid to practice for the role. Siblings have a huge role to play in making the life of their brother or sister with an intellectual disability worthwhile and fulfilled. Diarmuid has massive family support from us and from his three siblings, Julie, Philip and Colm. Likewise from his in-laws David, Aileen and Elaine.

I took Diarmuid to Kent train station for the meet up at 7.30am. We had to cross the road in the busy morning traffic. I told D to hold onto my left arm. As we neared the doors, we met one of my former school colleagues, Ber Navin, on the way to school. She recognised Diarmuid immediately. I was momentarily overwhelmed with a longing for my working life as a home economics teacher. Life has a way of punching us in the gut. I recovered quickly and chatted with Ber.

My son on my arm had sensed my distress. He is always clued into my feelings and responds in the best way he knows. At home, he will quickly make tea to distract me or comfort me. At that moment his sense of humour came to the rescue. Feeling my upper arm, he said, “Mother, that arm is gone a bit soft. You used to have a strong muscle there. You need to work out a bit.” I feigned outrage and we both burst out laughing.

Organ donation

It’s coming up to the third anniversary of his kidney transplant. He celebrates his birthday in September and his kidney anniversary in October. We remember that a family’s profound loss of a loved one was the way that Diarmuid got the precious gift of his new kidney. It turned him from a very sick young man who was barely able to function into a healthy, happy and energetic one.

If you find yourself in that awful situation where the question is raised about organ donation, please do not hesitate in saving the lives of others. I look forward to seeing the video and celebrating the achievement with D.

Meanwhile, I urge all politicians to embrace the rights-based approach in the UNCRPD for all people with disabilities.