World Down Syndrome Day: Struggle for rights recognition and inclusivity continues

Our Correspondent
Kohima, March 20 (EMN): World Down Syndrome Day is observed on March 21 to signify the uniqueness of the triplication (trisomy) of the 21st chromosome, which causes Down syndrome, and raise public awareness on the genetic disorder.

This year, the global theme is ‘We Decide’, inspired by the United Nations’ Convention on the Rights of Persons with Disabilities (CRPD).

According to a report by the Down Syndrome Federation of India (DSFI), “Down syndrome occurs in approximately 1 of 830 live births. It is associated with mild to moderate learning disabilities, developmental delays, characteristic facial features, and low muscle tone in early infancy.”

Further, the DFSI stated, “Many individuals with Down syndrome also have heart defects, leukaemia, early-onset of Alzheimer’s disease, gastro-intestinal problems, and other health issues.”

A paediatrician in Kohima, who did not wish to be named, told Eastern Mirror: “It is a chromosome anomaly present in a person’s body and it varies from mild, medium to severe.”

According to the doctor, not all Down syndrome children come under the disability category because they are able to support and take care of themselves. It has to be determined according to the person’s mental IQ, physical activities and many other aspects, the doctor added.

“Previously, they used to say that higher maternal age had more chances of (bearing a child with) Down syndrome but nowadays, mothers of 25, 27 years of age or young mothers also have (children with) Down syndrome. Therefore, we are doing a survey on this.”

The parent of a child with Down syndrome, on condition of anonymity, said: “Unlike other disabilities, I think parents raising Down syndrome children tend to neglect education for their children, particularly the downtrodden who cannot afford to send their children to inclusive schools. Also, there’s just a handful of inclusive schools and with no government-run schools in this regard.”

Purnima Kaina, the headmistress of Cherry Blossom School (an inclusive school) in Kohima, said: “They are perfectly normal and are social, friendly; of course, they need special care.”

She stated that children with Down syndrome like food and that ‘special care must be given to them’ in order not to cause other health-related problems like obesity, diabetes and others.

The educator emphasised on the need for oral hygiene and stated, “If oral hygiene is not taken care, it has the tendency of causing health issues for them as they like eating.”

She advised that children with Down syndrome should not be kept away (in hostels or other homes) from family as they rely on others.

“We cannot ignore them, give them equal opportunity, come down to their level,” she said.

Meanwhile, the state commissioner for person with disabilities, Diethono Nakhro, expressed regret that the Covid-19 crisis has led to cancellation and postponement of planned events on World Down Syndrome Day.

She also lamented the lack of proper records and statistics for persons with disabilities; and hoped for a change.

“However, on this day we reaffirm loudly that persons with Down syndrome are entitled to the full enjoyment of all human rights,” stated Nakhro.

“Many a times, persons with Down syndrome face stigmatisation, abuse and lack of support. World Down Syndrome Day is the right occasion to promote inclusive policies and raise awareness about social justice for people with Down syndrome. Let us all educate ourselves and do our part in creating a more socially just and inclusive world for everyone,” she added.