One of the things that at times can be really worrying is when we talk to families and service providers who keep telling us that we don’t need to look any further because a person is happy in their day service; ‘because we asked them and they said they are happy’. It’s a conversation that comes up all of the time.
We can understand that many families haven’t had a chance to think about alternatives but it is a bit sad when we hear it from people who are paid to think about other people’s lives. We know that people who have had such limited opportunities to taste life often say they are happy with what they have because they are answering within a very limited set of experiences and don’t know about other things. Gary, a young guy we know who has a disability, is a great example of this.
When he was chatting the other day on his way to work at Food Not Bombs(one of his two jobs), where he works and where he no longer needs any support staff, he was asked about how he felt about spending time at Milparinka Day program. He said, “No way, Milparinka is boring”. Two years ago the exact same question of Gary, by the same person, got an answer that said “I love Milparinka day programs, it’s great and I am happy there, all of my friends are there” and when around the same time we asked his family about attending the day service at Milparinka they said “he loves it, keep doing what you are doing, he likes being there with his friends, he doesn’t want to leave” Now his family says “he doesn’t like it there and his friends aren’t there”.
What happened in-between: Gary got to taste different part of life he hadn’t experienced before. He entered a whole new range of roles and relationships that came about because of who he is, what he values and what he wants his life to look like rather than being in a place because of the problems people think that he has.. When he is asked the question now he has a whole different context to answer it in, he has more things to measure.
He has a role where he is valued as an employee and where he is able to contribute more than just his work efforts; when they have problems out of the ordinary at work Gary is coming up with solutions on his own which work ( 2 years ago anything out of the ordinary was referred to a paid worker), he is surrounded by people who share interests with him, he has lunch with his group of friends who aren’t paid or being looked after, he walks to work with co-workers who used to be strangers, he adds things to his roles and relationships organically through each day, his life looks much more similar to people he relates to, cool young people, and the most important people in his life, outside of his family, are not paid. Interesting enough when Gary gets together with people who don’t see a system as the answer, to define his own life boundaries, and what they should look like, the boundaries are a lot less confining and a lot more interesting and adventurous than what others, including those who are paid, created for him in the past.
Next time someone tells you that someone else is happy in a day service because they asked them and they said they were it might be a good idea to ask them to think a bit differently and more deeply about it……. Especially if they are being paid to add value to someone else’s life. While we think Gary’s story is a very important one we know many people who after deep thinking decide to remain in their day service and to us that is just as fine as it is a choice made from the context of their own lives.
However whatever path a person follows, deeper connections in their communities or being in a more regulated environment we believe that if someone hasn’t had a chance to be known deeply and had this knowledge about themselves be the main influence in tasting life, experiencing more things, having more doors opened; if they havent been around people who believe that good is not good enough and who encourage people to have authority in their own lives and to expect more in their lives then they probably haven’t had an opportunity to explore enough.
