The Karachi Down Syndrome Program or KDSP launched a theme song, Pyaar Baanto, sung by Natasha Noorani Nafisa Khalid, Bilal Ali and Ali Hamza on Saturday in Karachi to mark Down Syndrome month in October.
Down syndrome is a genetic condition caused by a full, or partial, extra copy of chromosome 21. This additional genetic material alters the course of physical and intellectual development. About one out of every 700 babies born in the world has it. “In Pakistan, that means up to 300,000 and about 30,000 in Karachi,” said KDSP co-founder and director Ali Allawala while talking to Sidra Iqbal on the morning show Tuesday.
The Karachi Down Syndrome Program was started by a handful of families in 2014 as a non-profit organization who wanted people with the condition to be valued, accepted and included in society. According to Allawala, they began with seven families and have swelled to 1,600 in Karachi.
The idea is to provide a one-stop solution model for the Down Syndrome community to serve their needs. “We need to replicate it across the city and country,” he urged. “We need a change of thinking. I’ve observed we are always in fight or survival mode, so we are always trying to protect ourselves. This means we can lose empathy.”
The song Pyaar Baanto is a joyful way KDSP thinks of the work it has done to work with families. In fact, in the last week of September, Sindh Chief Minister Murad Ali Shah launched the new learning centre. He said that he would help with the finances if this work could be expanded to Hyderabad, Sukkur, Larkana, Mirpurkhas and Shaheed Benazirabad.
Indeed, this is what the people at KDSP have set as a goal. “A year ago, [Ali] Hamza and I were sitting in his patio and were talking about [the work of] the last seven years… we spread awareness, but what was the next step,” said Ali Allawala. “We should feel ready to not seek acceptance but to present and celebrate it. We are ready to spread the love.”
KDSP has six areas of service:
The song was produced by Ali Hamza Production House and stars Ali Hamza, Haroon Shahid, Natasha Noorani, Nafeesa Khalid, and Bilal Ahmed.
KDSP strongly adheres to the use of People First Language, which puts the person before the disability, and describes what a person has, not who a person is. Hence, when referring to individuals with Down syndrome one must refer to them as an ‘Individual with Down syndrome’, ‘Child who has Down syndrome’ rather than Down’s child or Down children.
When referring to individuals with Down syndrome in Urdu, you can use ‘Down syndrome ke saath zindagi guzarne wale ifraad’, ‘Ifraad jinko Down syndrome hai’, ‘Down syndrome ke saath zindagi jeene wale ifraad’.
Words not to use are: Retarded, handicapped, patients, abnormal, mastana, mongol, differently abled and special. These are a few words society uses due to a lack of understanding of this naturally occurring genetic condition.
KDSP says it aims to move away from the distinction of what is considered normal or abnormal, due it being highly perceptual. “In comparison to an individual with Down syndrome, we are considered to be neuro-typical or typically developing individuals,” it said in a press note.
