Friday, December 29, 2006

A Simple Chat

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.

6 comments:

Anonymous said...

Hi Dave
I've never left a comment before although I appreciate being able to read this blog daily. Felt compelled to do so today.
Everyone is indeed a library, and parents of kids with disabilities have volumes and volumes to share if only people would take the time to listen or better yet ask.
When your child is very young you learn quickly that privacy is not a luxury afforded to a family with disability. Everyone pokes and prods for information and it can be extremely intrusive and takes a while to get used to. After a lot of years you do get used to it. Problem is that pros seldom ask truly relevent questions. They need answers to questions that fit "their" needs.
They don't get a true picture unless the parent chooses to open up and let the info all flow out. This is something I have started to do at every opportunity (and I'm sure some don't particularly like that). I have found though, that when you do this many service providers, gov't folks etc really do appreciate the info and are absolutely amazed at my openness. This isn't unique to me, many many parents will do the same thing. It is important that these people really know (as best they can without actually living it) what your child is really like, as a real person, not as a client or case number, what impacts their (pros) behaviour and decisions have on that person's life, their families life. Funny how much is always focussed on the individual's "behaviour" but never,ever on the behaviour of the pros.
I'm always taken back a bit by the surprise these people show when you share all this personal info. It is only then that I truly realize that this isn't "normal" behaviour. Maybe it should be for everyone.

Lori

Jodi Reimer said...

I agree with you Lori. I've practiced telling relevant stories about my son when I need for people to really increase their understanding of who he is. He is more then his set of behvaviors. So far, we haven't been "burned" by disclosing too much, so I'll keep on self-disclosing whenever I feel that it might help my son.

Anonymous said...

I have had the gift of sharing Andrew and Manu's journey. Andrew gave his mother the gift of insight and many others courage and joy. David, you gave manu a wonderful birthday gift today by honouring her son. Andrew's book continues to inspire me and many others. Connie

Frances said...

Dear Dave- I LOVE that 'library' analogy-sooo cool.I, of course, have been giving my books away for free, for years. Sometimes to people who don't even want one. I've even had them thrown back at me. Oh well, not everyone is a reader.
When I was offered my new job, I wasn't sure about taking it. The lady I support[ eat with, laugh with, fart with, watch t.v. with, etc.] is developmentally delayed and physically disabled. I was also informed that there were 'mental health' needs. This freaked me out. 'Obsessive', 'manic',- what did these labels REEEAAALLLY mean?
When I was growing up, books like Sybil and movies like Psycho were popular and I glimpsed a very extreme, scary and not completely realistic face of mental health needs.
I'm not a good writer and I'm tired but what I'm trying to say is one reason why I'm enjoying my job so much is that I'm finding out the lady I work with is so much like me it's not funny. Manipulative, yes, and like, I'm not? Controlling- ditto.Worries[excessively] about her future. Sure, her condition is magnified 10 times greater than my own but the point is that we do, in fact share " issues". We are alike. We are similar.And I can't help but think the more of her life I examine, the more of mine I might gain insight into.Frances

em said...

Hello Dave.

I really enjoy your writing, all of the stories are so intersting and make such a beautiful point. I've bookmarked you and look forward to reading more...which says a lot because I never read blogs, let alone read every entry and wish there was more!

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