SOS is a place where we encourage people to stick their necks out and we celebrate the effort it takes. Like many similar organisations, SOS was founded by a group of parents in Kilkenny and it has grown to support over 160 people with intellectual disabilities and their families. The SOS mission statement is to provide a lifetime commitment to people with a learning disability. This commitment includes the provision of a service based on Christian principles, which recognises:
• The dignity and potential of the person with a learning disability
• The right of the person with a learning disability to be enabled to integrate as fully as possible into society.
It is the small things that matter. The celebration of these small things, the ordinary life is what makes the difference. These ordinary things are the same things celebrated by people who do not have a disability and are not supported by an organisation like SOS.
As a preparation for this article I looked through the SOS quarterly magazine called Rewind. It told the story of a donation from a child of some of his Confirmation money. Ger, a person supported by services, wrote about his trip to Madrid. Trevor spoke about his trip to Cobh. The Mayor of Kilkenny visited the SOS radio station. There was an inclusive review of services ‘Is your door open or closed?’ John Waters had officially opened the Dreamtime radio station. A Job Shadow event was recounted. On his way home from work, Brian met about-to-be President Michael D. Higgins (who was canvassing for the presidency at the time) and most importantly, Sonny celebrated his 60th birthday and Derek his 40th birthday. This week Paul got great news tht he is moving into his own two bedded apartment with his best friend, Lisa has started a course in WIT, Ashley has started a part-time course in Ormonde College, and Joan is celebrating her 50th birthday—a truly wonderful occasion because she has recently recovered from a serious illness.
My point is that when the disability world celebrates life’s special events—‘ Aren’t they great, considering!’—they tend to celebrate in large gatherings of people with a disability together. A number of years ago as we were celebrating the graduation of group of people supported by SOS, I was asked to say a few words, and I said that the day we stop celebrating these special occasions will be the day of greatest celebration. I think my few words were lost in translation. What I meant was that the day when organisations like SOS are not involved in celebrating such events will be wonderful, because it will mean ordinary life has replaced special life; it will also mean that being truly supported in one’s own community will have taken over the need for ‘a service’.
I would like to tell you the story of Peter. He is a man in his sixties, supported by a service for many years. Peter uses a wheelchair and is in need of one-to-one support for lots of things in his life. In the mid-1990s he was asked to become involved in a project that would find him a job. It was a wonderful project and Peter got a job counting money from a vending machine in a large pub near his center. He made great friends there, and some of these friends helped celebrate his 40th birthday (organised by his center). His friends also celebrated his 50th birthday, organised by his family and friends, and his friends organised his 60th birthday and invited his family and friends from the center. The last I heard from Peter, he had just retired from the job, after a celebration with his work colleagues who were also retiring.
What I think is interesting about Peter’s celebrations over the years are the people he shared his birthdays with—starting with his center, then family and friends, and most recently with his work colleagues . He moved from a ‘special’ insular life, to the ordinary wider social circle of family and friends. Last week, as my own father celebrated his 80th birthday, he was surrounded by friends and family. It was a normal ordinary special event—and great craic.
Last week a very wonderful and dear friend of mine passed away. Jane was a lady supported by services all her life. She attended special school, training services, and day service. She had a part-time job and was hugely into the Special Olympics, winning gold medals in the World Games in China. We celebrated all of her achievements; she was on the local paper and radio and even made it onto national TV. But what was striking at her funeral, a celebration of her life, were the ordinary things—the one-to-one friendships she had with her neighbours, her role in her local church, her support for her sick father—that everyone knew her, Jane.
If you cannot find life’s roses, go find the daisies sweet and revel in the common grass that sparkes at your feet.
In SOS we will continue to celebrate the large projects, such as the opening of eight two-bedroom apartments and the refurbishment of our respite house. But we cannot lose sight of what really makes a difference in the people SOS supports: that the celebration of underpinning values and principles is the key to real celebration. For instance, an organisation that is focused on the individual citizen, the person’s right to self-determination, is relationship-oriented, socially inclusive and person-centered. By celebrating these values, and the events which reflect these values, we have moved the focus of the service. This week we had first feedback from the external rights protection committee. This committee will allow the people we support to know and exercise their rights. SOS is half-way through a staff training programme called Building Community Links, to reskill staff to become community linkers, rather than community tourists. We have advertised for the first time for a housemate to support a person who wants to live a more independent life. Mary has a life-defining medical issue; she also has a mild learning disability and a child in care. She wants, and is entitled to lead, a self-determined life. She wants her supporting service to be a positive risk taker. The celebration of the success in this scenario will be when the supporting service is only a minor part in her circle of support.
I bring you back to the start of this article. The greatest day of celebration will be the day when supporting services are not part of the celebration.
Francis trained at the Daughters of Charity, Dublin as an RNID, and later completed a BBS in Business Administration. He started his working life at Cheeverstown House in Dublin, and worked at Saint Aidan’s in Gorey before being appointed as the CEO of SOS Kilkenny where he currently works. Francis was appointed to the Board of Directors of the National Federation of Voluntary Bodies this year and he is also the Chair on their Research Sub Committee. He has been involved in many international and national projects such as “A Seat at the Table” and the Genio project “Ordinary Lives”.