A GOOD LIFE MEANS EVERYBODY
When we talk about people we know who have moved towards more fulfilled lifestyles in this transformation, some people assume that we are talking about people with very good levels of skills. This is not always the case, many of the people who have made these changes have poor communication skills, some have problem behaviours, some have major physical disabilities and others have a very limited range of day to day skills. It doesn’t matter about skill levels, when we introduce people one person at a time in a way that allows them to know and be known by others, good things happen. It also isn’t the case that we are always talking about whole of life. For many people it has been finding the right moments to taste life in a different way and knowing what can be achieved.
Katie is a fantastic young woman, friendly, warm and full of smiles. Katie is extremely physically disabled, cannot move any of her limbs and spends most of her life in a moulded wheel chair if not in bed. Katie is fed her meals through a tube and has no formal means of communication. Katie also has major health issues and needs total care with personal needs. There is little doubt that Katie is going to require high levels of support throughout her life just to take part in a day. When we first got to know Katie we did the sensible thing, we put her in a room of people just like her so that we could meet her and their needs in sensible and efficient ways. How wrong were we.
When we got to know Katie by spending time with her and talking in more depth with people who love her, about who she is and what she values we realised that we hadn’t put Katie in a room with people just like her at all. People just like Kate weren’t people who shared an extreme disability they were young people, who liked bright lights, activity, noise and banter. When we realised this, together with Katie and her family we found a more sensible and relevant place for Katie to be. Each Monday Katie, when she is not unwell, spends her mornings at Melbourne University. She goes upstairs and collects recycled writing pads and takes these downstairs where she places them on her tray and people collect them. Instead of being in our sensible place she is in the hustle and bustle of young people, around movement, lights, noise, jokes, greetings and banter that she is becoming more and more a part of. At least on Monday mornings Katie is spending time with people who are just like her.
Update: Katie has moved to another service after shifting houses. She no longer attends the university.