Outsiders at the parent-to-parent counselling sessions at the Karachi Down Syndrome Programme (KDSP), should be graciously pardoned if they are a little astounded to see the participating parents together.

At a glance, nothing appears to be common between them. They seem to be just different people from uniquely different backgrounds with few commonalities. But if you scratch the surface, you come across the reality that there exists an intricate connection that closely binds them.

They call it a bond probably thicker than blood. A bond of resilience and hope, forged from their shared journey to unconditionally love and cherish their child. They call themselves “the lucky ones.” They talk, lament, and share possible resolutions for their children’s needs and plan future outings.

“When parents of children with Down syndrome meet us on their first day, they are visibly upset with feelings of helplessness, grief and despair,” says Samar Naqvi, CEO of KDSP — a non-profit launched in 2014 by a group of parents who, because of limited support and resources available locally, realised a need for a platform for those with Down syndrome.

“This is because, to date, there are people, including health professionals, who are reluctant to cherish the birth of a child with a disability,” says Naqvi.

Kicking off with only seven families in the first year, back in 2014, the organisation now caters to over 1,300 registered families through its different programmes. The programmes focus on family support, awareness, healthcare, enrichment and skills development, education and early childhood intervention therapies.

In the midst of general official apathy regarding Pakistanis living with disabilities such as Down Syndrome, citizen initiatives, a provincial government wanting to do better and parents with awareness offer a ray of hope

Starting from the time when, after a series of counselling sessions, they managed to get the consent of only a few families to get their pictures taken with their child for a billboard campaign, to today — when parents earnestly ask when their child’s photos will be put up on the organisation’s various platforms and communications collateral — it has been quite a journey for the KDSP.

“The first thousand days for a child with Down syndrome are really important for their future learning development,” explains Naqvi as the soft drizzle outside makes the Karachi winter chillier. “And that is where our resources factor in with prime focus. We have seen the outcomes are far higher for children with good intervention than compared with those who haven’t received it.”

While the KDSP has made its mark with its services in assisting families, Naqvi adds that the scale of intervention needed today in the country is far higher.

“There is a staggering gap present between the state and the society to address the needs of individuals with disabilities, and that gap has emerged because the state may have failed to recognise and identify the gravity and scale of the needs in the past,” says Naqvi, a Fulbright scholar working in the social development sector for nearly a decade.

Over a billion people in the world are living with disability, according to a World Health Organisation survey report. That’s about 15 percent of the world’s population, or nearly one out of every seven people. Going by this global estimate of persons with disabilities, such Pakistanis would number 20-31 million.

Ironically, in what appears to be a classic textbook definition of statistical misinformation, there are currently less than one million persons with a disability residing in Pakistan (0.48 percent of the total population) according to the 2017 Census. This is a figure which is less than that of the previous census conducted in 1998 — which put the figure around 3.2m or 2.38 percent of the total population.

“That is sheer negligence,” says journalist Ramisha Ali. “When civil society protested over the provisional results, they came to know that the disabilities checkbox was not even in the original survey, but added later. Secondly, given the taboos associated with disabilities, we aren’t sure whether the statistics bureau used inclusive language [while enquiring from] parents.”

While the Pakistan Bureau of Statistics is under fire for its performance, the Sindh government has issued over 25,000 Disabilities Certificates since 2018 under its Department of Empowerment of Persons with Disabilities (DEPD) — a department formed after merging mandates of the Social Welfare and Social Education departments.

“Data is the biggest challenge we have,” says Sadiq Memon, Special Assistant to Chief Minister Sindh. “We do not know the exact number and the type of disabilities people have, in which areas of the province. And that is why our reach gets limited. Resources cannot be allocated without having the relevant data that shows the presence and type of disability.

“A database is the need of the hour,” he adds. “Obviously, it cannot be done overnight, it requires immense time and effort and it is under our future plans.”

Memon continues: “The Sindh government has a developmental budget of 800 million rupees for 2021-22 for my department. Funds are not a problem for us. We are aiming to double the budget next year. Our focus right now is to work in collaboration with the development sector under Public-Private Partnerships, to ensure the provision of human resources for programmes focusing on people with disabilities. Alongside data, the lack of trained human resources is also a challenge that must be resolved through collaborative efforts,” explains Memon.

He admits there is no single specific programme focusing on Down syndrome running in the province, but quickly adds that his department plans to formulate target-oriented programmes with the assistance of the development sector organisations already working on it.

But while the state is still engaged in the process of getting its counts right, and ensuring provision of basic resources for people with disabilities, away from all of it, Dr Asha Mahesh is more concerned about the education and skill development of her children than anything else.

“At least it is better than before, when people used to ask parents ‘How come your child has Down syndrome?’, without any ethical considerations,” she says. “But still, more awareness is needed, especially at hospitals. At least staffers should congratulate the parents after the birth. No matter what the world thinks, I know that my daughter is my best friend, and I know she is a beautiful, precious soul and I am a lucky one — nothing else matters.”

Professionals belonging to the development sector filling a void left unrecognised by the authorities, a provincial government finally setting its priorities on a section of society ignored previously, parents owning their children with no shame or remorse — clearly deep somewhere in all this, there still exists hope for a better, more inclusive future.

The author is a graduate of Politics and International Relations from Royal Holloway University of London

He tweets @ebadahmed

Published in Dawn, EOS, January 30th, 2022