Schiavo: Lessons to be learnt

People are not passive agents of their own destinies. Their experiences and actions are constituted with respect to their social locations and the lives of others (Brannen 2002, p. 1).

Terri Schiavo's story has dominated international media and probably divided "popular" opinion in half: Should she live or should she die? We discuss this issue as we watch TV and sip our tea or nibble our supper late in the evening! But, what is at the heart of this debate?

Unfortunately, this drama has turned into a Hollywoodian comedy. I personally do not intend going into any ethical-moral debate on Ms Schiavo's story as I stand with my opinion steadfastly, rationally and judiciously: She should be supported and facilitated into living and not dying!

This is not only about Ms Schiavo, this is about many people who are in pain, in anguish and agony or interdependent on others for their livelihood. My social work role takes me to so many different parts of the island where pain "to me" is unbearable. So what do I do, do I suggest euthanasia, mercy-killing and giving "the right for people to die"... and then? Where do we draw a line?

This is not about Terri Schiavo. This is about us, about the way we perceive life, the way we interpret pain and diversity. This sounds so terribly familiar. Is this debate a déjà vu of dreadful experiences we went through during the last war? Ms Schiavo's story doesn't really connect us with her pain but with our fears. Her story doesn't link up with the debate of life and death that we are forcing ourselves to make but our own qualms of facing an itchy veracity.

I work within the disability field and at times it is not easy for parents and disabled people themselves to cope with the tough reality they are immersed in. As a professional, I support the family and individual, help them interpret the signs around them, hearten people to look for the positive, share the dilemmas, snags and aggravation and come up with solutions even in the tough events they are going through. In 1990, Ms Schiavo suffered a collapse. During these last 15 years people have been rationalising a way to discontinue her right to live. Her story has ignited in me the passion to live and to identify in what way/s society is causative in making life uncomfortable for others. What can society be doing to make life worth living for those around us - or are we too busy pulling off feeding tubes and switching off plugs?

My professional role in the disability field has taught me to make way for diversity and to stop making decisions for other people. Disabled people have given me the courage to make life, to mould destiny, to fashion dreams even if at times the barriers to beat these challenges are not easy to overcome.

Ms Schiavo, who seems ordained to die in the coming days, requires our support through our own reflection and by hearing more what the Maltese Council of Disabled People, the National Parents Society of Disabled Persons and the Federation of Organisations of Disabled People have to say about this debate.

In the play the Prince Of Homburg, von Kleist, the author, analyses the life journey in this simple anecdote:

This life, says the poet, is a journey,
And a short one. Really! From six feet up
Above the earth, down to six feet under.
(Heidrich von Kleist, 1811)

This is about "time". We need not abandon the effort and deny belief. The quest to live together takes time. Deciding on each other's time is the evil of today. Little stories come to mind: Story 1: A male parent I met last Thursday afternoon. He hugged his 14-year-old intellectually disabled daughter with so much love and kissed her as I have never seen a father kiss his child. Story 2: A parent of a disabled boy with cerebral palsy recalls the birth of her disabled son 17 years ago and speaks of her son as the most beautiful person in the world, with tears of pride and self-respect. Story 3: A young man with a physical disability who is struggling in life but is so happy to be achieving (in time) his dreams.

This is the answer to any debate - the stories of people.

I am for Ms Schiavo living - and you?

Dr Azzopardi is a social worker and teacher by profession. He is qualified in inclusive education and disability politics, lectures at the University of Malta and has presented research papers in numerous conferences and symposia.