Know me, not my disability – A Parents Perspective


by Sam Goncalves, Parent

We all know first impressions can have an impact on us.

When I meet someone for the first time I may notice their firm handshake, their smile, their warm friendly disposition, their wit and sense of humour.  If a friendship develops I will get to know the person better, what they like, dislike, their life experiences and what we have in common.

I have been blessed with a few close friends during my life.  What makes these good friendships is enjoying recreational time together.  Fun for me is doing a ten mile run on a Saturday morning.  I feel free, alive and being outdoors with nature exploring the woods and parklands in my local area is almost therapeutic.  Good friends have also been there to support me through difficult times especially when I lost my mum some years ago.

The foundations for these friendships were built on time getting to know each other as people.

So why should we be introduced to disabled people by their medical condition?

Hi I’m Sally, I’ve cancer how are you?’  How bizarre does this sound!  Why should people have predetermined opinions on an individual based purely on their diagnosis?

My son Shane is almost 17.

He has the most beautiful blue eyes, radiant smile and joyful disposition.

He gives the most warm-hearted hugs in the world and his courage and determination overwhelm me with immense pride.

Now, the boring stuff – Shane has cerebral palsy. He is severely visually impaired and has a severe learning disability.

So how do I ensure Shane has the best support to help him in his daily life?

Knowing Shane as a teenage boy, his character, his little idiosyncratic ways, understanding the importance for Shane to be independent and having patience with him to allow him to do things for himself is vital.

You cannot learn these things about Shane in a medical report.

Since having a wiki for Shane, I feel I can help Shane introduce himself.  I can support him being true to who he is and enable planning for his future to be based on what’s important to him as an individual and not in regard to his medical diagnosis.

Of course we cannot forget that Shane needs support due to his learning disability, however, what this support looks like is now determined by Shane as a whole person.  Emotionally, physically and psychologically.

Isn’t that what we all want for our lives?  To be accepted, supported and loved for who we are?

Tree of Life‘The tree of life.

For me this picture represents Shane’s life.  The hands are securing the trunk representing Shane’s family being his strong foundation.  The branches are Shane’s growth.  The mosaics representing the importance of all the pieces fitting together – for example, professionals working with our family and Shane towards common goals.

The fullness of the tree, the leaves represent Shane’s aspiration to lead a full life.

The butterfly is my mum, Shane’s grandmother looking out for him’