It was a simple enough task. I was to do an interview with the Executive Director for the staff newsletter. I enjoy doing interviews, it's a chance for two people to have a planned chat. No phones, no interuptions - it's talking, it's work, it's good. I'd worked with Manuela for several years as a consultant in various capacities and for almost a year as a staff for Vita. There were no ground rules for the interview so I approached it to find out what interests me most about people in this field. Why here, why now, why the passion?
But I wanted to be careful. I knew that Manuela had had a son, Andrew, with a disability. I knew as well that Andrew had died a few years back. Even though this was the staff newsletter, not the Globe and Mail, I still feel that the media (in any form, large or small) can be too intrusive into people's private lives. Yet I wanted to ask her how having Andrew, as her son affected her in her role as an executive director. Did the experience of disability, close up and real change how she saw what the system should be? Did the 'politics of the personal', I think it's called, affect every day decisions that she would have to make? Did the voice of other parents sound different in her ear - having walked in their shoes?
Manuela, knowing that because of my size and my disability, I find many chairs either too narrow or too low almost always comes to my office when we need to chat. So she settled in and we began. I could tell, right off, that asking her about Andrew was OK. Many people avoid talking to family members about spouses or children lost. I have never understood that, they lived, were here, and continue to have presence in mind and memory - why NOT talk about them? When his name was mentioned Manuela smiled and began to talk about her own journey, of coming to accept Andrew's disability and then having to learn how to advocate from the other side of the table.
She saw how rules were set up that differentiated children, that inconvenienced families, that made difference something that separated - not something celebrated. Suddenly the world seemed different to her, that she was being asked by professionals to see her son as they did - a problem to be dealt with - a difficult need. Local schools and hospitals wanted him shipped off to somewhere else, somewhere special, anywhere away. Suddenly she understood community at a deep level. She saw the real need of her son to simply belong, to a family, to a neighbourhood and to a community.
Would this affect her philosophy, decisions and actions. Of course it would. Of course it should. And of course it does.
This is what is wonderful about working in human services. We are called upon to be human, to look at our experiences and learn from them, to use ourselves as a wellspring from which we can water the gardens of gentleness, tolerance and respect. You will note on this blog I speak a lot of my experiences with others, my experiences with difference and my experiences with the life I've been given. I do not do this as a form of 'chronic self disclosure' (as someone accused me of doing in my lectures and books) but because I believe that we each have a multitude of answers and solutions at ready glance. We need look within - to our own humanity - our own needs - our own failures and frustrations - to discover the path.
Years ago when someone I loved dearly died, I heard the expression, "When someone elderly dies, it's like a library burning down" for the first time. I understood that instantly, so much wisdom is lost. It would take me years to realize that this means that I (that you) have a 'library inside'. Trouble is - so many people just never take out a book.
Andrew's purpose, was at first, to simply be Manuela's son. But his purpose is greater now, he is to remind her - and through her others, of the cause of community. She only need but look inwards to see what needs to happen out there. She just needs to take out the books under the subject 'Andrew'.
I know from reading some of the comments here on this blog, that each reader has walked their own path and endured their own struggles. That each person seems willing to reflect internally when pondering externally. This heartens me, this means that we are all willing to grow as people and grow in our capacity to truly care.
I was deeply grateful for Manuela being willing to be so open with me. And being willing to trust me to write this blog when I asked her. But I am equally grateful to those of you, gracious enough to leave any comment at all (I truly truly appreciate comments), but especially those that give me glimpse into your life as well. Your journey in service delivery as a journey in reflection.
Someone said, "An unexamined life is not worth living" and I remind you that for every minute you spend in examining the life of another - you need to spent two examining the life, and motive, and meaning of, you, the examiner. The courage to do this is what will bring us to the edge of exceptional care, the courage to rebel when rebellion is necessary and the courage to stay the course no matter the wind or weather.