Dis is ability

It is one thing to have a child with an intellectual disability, but quite another thing having a child with an intellectual disability and then mental illness on top of it.” I watched Arlene Williams on one of the morning talk programmes trying to hold back her tears. Dignified yet vulnerable, her pain and struggles came through the screen.

But there was pride also, dignity and a strong sense of survival that drew me to her and forced me to put down the remote.

Her son Jon has Down syndrome “a chromosomal condition that is associated with intellectual disability, a characteristic facial appearance, and weak muscle tone in infancy... Delayed development and behavioural problems are often reported in children with Down syndrome. Behavioural issues can include attention problems, obsessive/ compulsive behaviour, and stubbornness or tantrums.” Jon tried to live a normal life, with a girlfriend and even competing in the powerlifting category of the Special Olympics. He suddenly had a psychotic break, lost touch with reality and became violent. Arlene described a nightmarish journey of trying various medications, moving in with her sister to help her deal with the challenges, all while attempting to retain a sense of who she was. But the point of this article is why Arlene and her son Jon were on the programme in the first place. They attended a wine and art evening and she assumed she would have to hold Jon’s hand and guide him with the painting.

Surprisingly, Jon produced a piece of art that she laughingly said was better than hers.

That was her “ah ha moment” and she started to look for an art teacher for him. The idea of an exhibition came to her, not necessarily to make money, but to demonstrate the amazing healing powers of art for young people who may be struggling like Jon. She also wants to use the exhibition as a means of offering support to parents who may be facing similar challenges.

Living with a violent partner is scary, but there is always the option to walk away. It is not as simple when dealing with your own child. I have listened to horror stories from my own friends and family.

They hate the fact that this child constantly has everyone in fear, but feel guilty at the thought of giving them over to the care of someone else. An unending dilemma.

In our work with young people, we use the rich cultural forms of our country to break through the behavioural issues, problems at home and inability of those in authority to relate. We also saw this in action at the Hindu Prachar Kendra for Phagwa celebrations, with the tireless efforts of cultural workers like Pundit Ravi Ji and Geeta Ramsingh who insist that young people must take the lead in their community programmes.

In a week when our schools were once again in focus for terrible dysfunction, Jon’s story serves as a reaffirmation of the power of the arts.

Unfortunately, there continues to be a disconnect between what our society needs and what we receive.

We speak about work-life balance for adults, but that philosophy must now be applied to our youth and implement the long-promised move away from pure academics to activities that heal and uplift.

Jon’s exhibition closes today at the Horizons Art Gallery, St James. And even though his mother said you don’t have to buy anything, send a powerful message by making sure it is sold out.

D a r a Healy is a perform a n c e artist and founder of the NGO, the Indigenous Creative Arts Network – ICAN