I am moved by the plight of 17-year-old Gareth Ho as he unfolds the struggles he faces with muscular dystrophy. (Telling stories of those with disabilities, to forge greater inclusiveness; The Straits Times September 8, 2017). In the report, it was mentioned, the teenager who moves around in a motorised wheelchair due to his muscular dystrophy condition has faced humiliation with unkind action and words.
Once a teenager spat on Gareth’s hand and wiped it on Gareth’s arm at the Sengkang LRT station. Gareth said he was shocked and angry for being humiliated in this manner. Occasionally, the young lad has to explain his condition to strangers when they tell Gareth that at his young age, he ought to be walking about instead of being in a wheelchair.
It is abundantly clear that these strangers are obviously ignorant of muscular dystrophy.
What is muscular dystrophy?
Muscular dystrophy is a group of diseases that cause progressive weakness and loss of muscle mass. In muscular dystrophy, abnormal genes (mutations) interfere with the production of proteins needed to form healthy muscle. Some people who have muscular dystrophy will eventually lose the ability to walk. Some may have trouble breathing or swallowing. There is no cure for muscular dystrophy, but medications and therapy can help manage symptoms and slow the course of the disease.
Due to lack of understanding, often people with disabilities are judged, underestimated and looked down upon. Even though we are an affluent and well-educated society, how many people are willing to accept persons with conditions such as autism, mental illness, muscular dystrophy and down syndrome which they do not choose to have? Often the hurtful comments and actions directed at this group cuts like a knife immediately, but the wounds inflicted can last for years to come.
One way to beat discrimination and show a unified respect for persons with disabilities is to encourage persons with such special needs to share their personal stories – through the media or through novels.
Through such platforms, much awareness and action can be created in which persons with disabilities will be able to lead normal lives and be seen for the people they are, rather than a focus on their disabilities.
It is not easy to market books written by budding authors, but if there are platforms for them to promote their works, we can have many success stories.
I am encouraged that the newly designed hawker centre in Pasir Ris central centre managed by NTUC Foodfare will have events like art markets and craft fairs (New hawker centre to serve creative meals; September 7, 2017, The Strait Times). One way to support our authors with disabilities is for this upbeat hawker centre to provide rented stalls priced at $10 for them to sell their books.
I am confident that through this avenue, these authors can chart a writing career for themselves and be able to be self-sufficient where they can live independently. Those are interested can buy the books and help lift the human spirit. Let us bear in mind that although there many people with disabilities, they also possess abilities. Moreover, mingling with the diners will provide the much-needed social cohesion for those with special needs in which a new view of how we can respect our differences — and celebrate our similarities.
For when we can produce positive energy, we will be able to bring sunshine into lives of those with special needs –thereby earning the reputation of becoming a truly gracious society.
Raymond Anthony Fernando