I write this newsletter every couple of months in the hope that you the reader will enjoy hearing about Isaac’s good life and the possibilities that are opening up for him. Some of you are the people I know that love and care for Isaac and his future. Others may be people who don’t know Isaac who are exploring what is possible for a person you know who has a disability.
I also write to help change mindsets that are often unknowingly held about people with disability that can lead to Isaac not being included in his community. I hope that you will be able to retell Isaac’s stories to others and help them understand and see a positive future for Isaac and other people with disability too.
Historically disabled people have been viewed as being dependent and in need of “professional care”, rather than as individual people with dreams similar to any other person. This has meant that traditional models of service provision often focus on incapacity, inability and risk, and in doing so create and perpetuate dependency.
Ironically, research has shown that being under “professional care” is a far more dangerous way to live in than the community. There are many risks such as neglect, physical and sexual abuse, forced medication and treatment, forced labour etc. Reasons for this include low staffing levels, overcrowding, decisions being made by staff without knowledge or meaningful input by the residents, a lack of transparency about how funding is allocated or spent, and the sheer isolation of group homes. So I also write this newsletter in the hope that you will see that you can be involved in Isaac’s life and help safeguard him.
One of the strongest wishes that any parent can have for their sons and daughters is that they are happy and fulfilled in what they do and they have a strong network of friends and family who love them where they can be accepted and feel they belong. That is my deepest desire for Isaac – for him to belong.
I’m constantly looking for ways to protect Isaac against the likelihood of rejection and increase the possibilities for him to be accepted and to belong. Feelings of belonging and acceptance come from being recognised as someone who is intrinsically worthwhile and/or having characteristics that are seen as worthwhile. This could be as big as being in a role that allows someone to contribute to society, or it could be as small (yet no less important) as being admired for a small talent or skill.
When people first meet Isaac they often expect him be a certain way – to be constantly happy, or to be prone to violence, to like music and animals, to never grow up, to never have intimate relationships, to be a burden on the family. However, when people discover that he is a loved family member, a member of his local church, a student at an ordinary school, a letter box delivery person, a cat minder, a plant carer and so on they are more likely to value him and see him as a person worth getting to know. So I’m also writing this newsletter to show off the things that he can do in the hope that you will be able to tell others about what he can do, instead of the things he can’t.
I’m also constantly trying to give Ben and David equal amounts of my love and attention, work and take care of myself. It’s a bit of a tough gig sometimes.