MARCH 21 was just another day on the calendar until my son was born. One in 700 babies are born with Down syndrome (DS) and March 21 is observed as World Down Syndrome Day. The 21st day of the third month represents triplication of the 21st chromosome, the cause of Down syndrome.

As a mother of two children with DS, I take every opportunity to educate, advocate, and encourage acceptance of individuals with DS while challenging the associated stereotypes. Our society tends to divide individuals between normal and abnormal categories labeling anyone who doesn’t fit basic criteria as abnormal. DS is not a disease causing lifelong suffering and neither is it contagious. It is a condition that is part of an individual’s life and even though it adds its own struggles, people are able to lead fulfilling lives with education, love, and care.

DS occurs due to an error in cell division resulting in three copies of the 21st chromosome instead of two. The presence of this extra chromosome leads to an array of health issues affecting the person’s mental and physical health. Early intervention and therapies including speech, occupational, and physical therapy can help promote independence and productivity. Children with DS have delayed developmental milestones along with intellectual and cognitive disability. Medical complications relating to hearing loss, gastrointestinal and immune disorders, vision and dental problems, leukaemia, and heart defects are prevalent but treatable with access to proper healthcare, which can greatly improve quality of life.

There is no reason to mourn the artistry of God. A child with DS can be born in anyone’s home as it occurs by chance and at random. It has no link to a parent carrying a gene for DS but the regressive mindset of our society often blames the parents for the birth of a disabled child. Parents resort to hiding these children in their homes without providing them proper education and care. In fact, for me, there is perfection in all of God’s creations as reflected in the Quranic verse: “We have indeed created man in the best of moulds” (95:4).

People with Down syndrome are able to lead fulfilling lives.

Each one of us deserves to be respected in a society that is inclusive of everyone. Societal isolation and lack of support are a harsh reality for many families of children with disabilities. How the diagnosis is delivered is as important as the diagnosis itself! All parents have aspirations and dreams for their children but being introduced to your child with phrases like your child will be extremely delayed, might not walk or talk for years, or be nothing similar to a typical child, may be traumatising. However, we also know that people with DS are capable of all that people say they are not. Allow yourself to grieve but always remember that the diagnosis doesn’t define your child. Every time I watch my children achieve a new milestone, I think of the days I grieved over all the things they wouldn’t be able to do.

Lack of empathy in our society is mainly due to a lack of inclusion. Our biggest dilemma is society’s preference for children to grow up surrounded by others just like them in a competitive learning environment. They are not exposed to children with disabilities and many have never seen anyone with a physical disability using a wheelchair in school or someone with a hearing aid or a cognitive disability.

Parents of neurotypical children prefer separate schools for those with disabilities as if it might lead their children to ‘catch’ the disability. Children’s exposure to disability is primarily through beggars on the road using a stick to walk or crawling on the sidewalk. The only way we can make our future generations more empathetic and compassionate is by exposing them to people with all kinds of needs. Raising awareness is the first of many steps to creating an inclusive, non-judgemental, accepting world.

An inclusive educational environment is immensely beneficial to everyone. Neurotypical children get an opportunity to interact and engage with someone who speaks differently or works at a different pace teaching them patience while making them more accepting of those with special needs. Inclusion in schools plays an important role in instilling in children an appreciation for each other’s differences.

Changing perceptions is a tough battle. We can play our part by changing the mindsets of those around us. Educate yourself and remember when you use any of your faculties to help someone who has been deprived, you are putting yourself in the service of God and showing gratitude for what you have been blessed with. Invest your time in volunteering and donate to organisations working for the betterment of people with DS. The day we realise the strength and perseverance of anyone with a disability is the day we learn to be grateful and respect every life.

The writer is an advocate for persons with disability.

Published in Dawn, March 21st, 2021