It takes someone special to foster 'soul-smiles"

First published in Hamilton Spectator August 2, 2000

As I sit back in my chair, I watch the faces of the musical group preparing to play. I can see they are talking quietly to themselves as they gaze out into the crowd. All their preparations have been for this one evening. Possibly some of them lay awake last night, practicing each beat of each song. As they got dressed in their finest, I am sure excitement surged up in the soul of each musician. The special night is finally here!

I especially remember one part of a song they performed. It was "how long can we survive before we are set free?" I am sure these words went unnoticed to many when the song was being played, but to me this was the crucial message of the night. The name of this group was Ann's Musical Friends. You possibly won't ever hear them. They won't be in any great music hall, coming near you. They aren't or will never be well known in musicians' circles, but they are loved, accepted by all who really know them and they are respected as individuals. Their beats were maybe a little off, and when they tried to sing, the words didn't come, because most of them were nonspeaking. When I really looked and really listened to the music from each soul, however, I knew that each of them were musicians. They just had to live within bodies in which there was no way to foster or follow normal musical activities. If smiles could sing, believe me, the singing would be amazing from this group of severely physically disabled adults.

I was reminded again how important it is for each of us to have an escape path in our life, just to spread our wings and enjoy being a kid at heart. My brother bought a dune buggy. He didn't really need it at all. When he gave me a ride, I saw that same smile that I saw on my friends' faces at the musical. These smiles are "soul smiles". They are crucial to have in our lives. They come from a host of activities that are individualized and suited to each of us.

It is impossible to put into words the heartbreaks that anyone who has a severe disability goes through in life. I am tagged as having a disability myself, but I am fairly independent. I am too often discouraged at how some in our society treat any person with severe disabilities. Being human means reacting to others. Our lives are dependent on human interaction and relating to our fellow man. We aren't ships unto ourselves, making solo trips across the sea of life. We are a by-product of our interactions with others.

It is my conviction that we don't assume anything when meeting a person who doesn't measure up to the social "norms". There is nothing more beneficial to an individual than to be treated with dignity and honour. At the same time, there is nothing more disempowering than a person being deprived of this treatment. Two old sayings come to mind here, "You can't judge a book by its cover," and "Treat people as you want to be treated yourself." The mistreatment of those with disabilities that goes on daily, I am sure, would blow us away.

When it comes to hiring persons to help in caring for others, we must be aware of the potential for mistreatment in the form of physical and psychological neglect and abuse. We must have high standards. Adequate resources are needed for ongoing training and retraining. It is very important to be observant and attentive to the physical and mental needs when caring for others. These jobs aren't for everyone. It takes a very special person. If a person is not doing the job in a manner that gives dignity and self-worth to the people in her/his care, then this person's role should be reviewed and steps taken. Care workers can become wrapped up in following guidelines and rules that have been established to meet budget requirements, not to meet the needs of those being served. If any of these guidelines and rules stand between preserving human life and honouring it, then the red lights should be on, folks. When we put finances ahead of personal safety and personal growth, the yellow lights should be flashing. I ask you, how long can those with severe disabilities survive before we set them free? We, as more physically able members of our communities, hold the keys that can and will give freedom. Some of these keys are physical but the keys that I am talking about here, are mental keys of: honouring human life, seeing all people as equal, building up others, and having high regard for all persons' hopes, dreams, needs and wants.

I think one of the most delightful gifts I was allowed to receive this spring was when I attended that musical event and met Megan, the young music therapist who made it all happen. She is a delightful young woman who will go far, not only because she is totally immersed and committed to the music of a particular night and to her interactions with her students with physical disabilities, but because she actually pulls out "soul smiles." At the same time, she gives her students a new reason to live. Megan has been trained as a music therapist, but I know that her compassion and humanitarian skills don't all come from her schooling. Quite likely she learned it from a non-funded source like her family and/or peers. There are many Megans out there. They are the very special individuals in our world, doing what they do best, fostering and producing "soul smiles" in others. I personally thank all those like her. Oh that we all might model her example.

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