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Two weeks ago, I interviewed the MS of one of the biggest public hospitals in Karachi. As we were in the elevator \u2014 by \u201cwe\u201d I mean my daughter BB Marium and I \u2014 <\/strong>a young doctor whispered, loud enough for everyone to hear, \u201cShe is Down Syndrome. She is Down Syndrome,\u201d repeating it twice to make sure everyone knew.<\/p>\n I turned and said, \u201cWhat do you mean? Should I say you are a human being, so that everyone can know?\u201d<\/p>\n One can be surprised how a doctor could be so desensitized as to embarrass a parent in public. But this is normal for every parent who has a child with visible features of being special, like Down Syndrome. The word people normally use is \u201cabnormal,\u201d to be precise.<\/p>\n A parent of such a child gets used to these words, these stares, as if they are aliens. To the ironic attitude of people pulling their children away from ours, as if our child is mentally ill or a dangerous species. And irony is that other normal children either bully them or make fun of them. As Gandhi put it, \u201cThe measure of a society is how it treats its most vulnerable.\u201d<\/p>\n No matter how much we have emotionally, personally, and financially invested in their education, upbringing, and discipline, so that they look decently dressed, confident, well-behaved, and calm \u2014 for them, they are still \u201cabnormal.\u201d<\/p>\n This is the quiet cost of a desensitized society. It begins with misinformation in healthcare. It continues on the street. And it leaves families fighting alone for access to schools, therapy, and basic inclusion. When we stop seeing the person, we also stop seeing the need for inclusion in schools, clinics, and workplaces.<\/p>\n \u201cThe Wound Is Where The Light Enters\u201d<\/em><\/strong><\/p>\n \u2014 Rumi<\/em><\/strong><\/p>\n I spent the last two weeks meeting parents of children with Down Syndrome. I wanted to understand one thing: what does life with dignity look like when society has stopped seeing you?<\/p>\n Saba Kamran, mother of Hassan, recalled the day Hassan was diagnosed.<\/p>\n \u201cI was emotionally shattered,\u201d she said. \u201cThe physician told me, \u2018People will suggest therapy, but you don\u2019t need to. They are slow in physical development and they will never grow mentally.\u2019\u201d<\/p>\n She followed that advice.<\/p>\n \u201cI regret those four years,\u201d Saba said. \u201cThere was no awareness. No examples to follow. Parents hide children like Hassan to save themselves from embarrassment. So you think you are alone.\u201d<\/p>\n \u201cYou Are Not Greater Than The Creator\u201d<\/p>\n Naseem Mohammad Saleem stitches clothes at home for a livelihood. She is the mother of Fatima Gul, 18, who sat quietly, well-dressed and calm.<\/p>\n For a long time after her birth, Naseem didn\u2019t even know her child had Down Syndrome. \u201cWhen I found out, a doctor told me not to invest in her. He said children like this don\u2019t live long.\u201d<\/p>\n Naseem\u2019s reply was simple. \u201cYou are not greater than the Creator. I will do whatever is in my capacity.\u201d<\/p>\n Her goal is to see Fatima grow into an independent, self-reliant young woman.<\/p>\n But outside her home, the struggle continues.<\/p>\n \u201cPeople stare,\u201d she said. \u201cThey ask, \u2018Yeh malang hai na?\u2019 No matter how much we work on discipline and education, for many people she is still just \u2018abnormal.\u2019\u201d<\/p>\n \u201cEvery Step A Celebration; Every Gaze A Theft\u201d<\/strong><\/p>\n<\/blockquote>\n I heard the same pattern again and again \u2014 in clinics, markets, at family events. Stares. Whispers. Embarrassing queries.<\/p>\n Ifrah, sister of Imran, said: \u201cImran was born right after me. He is the second child.<\/p>\n It was traumatic for my parents to accept a male child with Down Syndrome. But after the shock came the realization. They did everything to educate him and help him excel in learning skills.<\/p>\n Despite all of this, wherever we take him \u2014 parks, weddings, malls, events \u2014 people stare at him. Those stares and gazes make Imran conscious and afraid.<\/p>\n He loses all the confidence that we have spent so many years building in him.\u201d<\/p>\n Sanober Rehmatullah, mother of Riffah, who graduated in screen printing, said her daughter has a skill, a qualification, a talent.<\/p>\n And still, people fail to see her strength. For them, she is just \u201cdarvesh\u201d and \u201cmalang.\u201d<\/p>\n Pointing to society\u2019s failure, parents reflected:<\/p>\n \u201cFor us, each tiny step is a celebration and a milestone. But society\u2019s non-acceptance of our children has taken away the joy of their present achievements. It has made us only worry about their future.\u201d<\/p>\n Ifrah added, \u201cThis attitude has made us forget the most important part \u2014 that today is about enjoying each day of their growth.\u201d<\/p>\n \u201cFrom Fear To Faith: Let Them Be Empowered\u201d<\/p>\n \u201cIt is not our abilities that show what we truly are, it is our choices\u201d \u2014 J.K. Rowling<\/p>\n Ms. Samana Batool, associated with the welfare and counselling program for Down Syndrome, understands the deprivation and pain of parents who come for counselling.<\/p>\n \u201cIt shows the huge gap that the media and other stakeholders have left in creating awareness in society,\u201d she said. \u201cWe encourage parents to celebrate their everyday progress and trust their abilities.\u201d<\/p>\n \u201cAt our organizational level, we are doing our level best to address Down Syndrome from an early age, especially for education. But the need is much higher, and resources are limited.\u201d<\/p>\n Her mission for every DS parent and family: \u201cLet them be empowered. Make them confident. And learn from them. The change will definitely follow.\u201d<\/p>\n Another special educationist, Ms Sidra Sajid, with a post-graduation in Psychology, said the biggest challenge is parents who come with fear about the future.<\/p>\n \u201cSome parents are not even ready to accept that this is a genetic issue, where there is a difference in chromosome 21. Down Syndrome is a genetic condition that affects physical features and developmental milestones. Most of them look alike, that is why some people also call them \u2018mongol.\u2019\u201d<\/p>\n \u201cSome parents even go to the extent of considering it a result of black magic, or believe that a taweez would get rid of it.\u201d<\/p>\n But she also sees change.<\/p>\n \u201cPeople are no longer neglecting such children. Parents are now bringing them for all types of therapies and education.<\/p>\n The parent has to accept their children and trust them. It\u2019s not necessary that if a child is not good at computers, he can perhaps do very well in painting or weaving. You just need to trust their capabilities.\u201d<\/p>\n \u201c13 Competencies and 7 Deficiencies; Potential Infinite\u201d<\/p>\n Speaking to Mr. Farman Ali Tanwari, Regional Director, Department of Empowerment of Persons with Disabilities, DEPD Sindh, he said the Sindh government is fully geared to make society more inclusive through NGO partners like KDSP, KAVTC, MALC and others.<\/p>\n \u201cChief Minister Syed Murad Ali Shah and Secretary Taha Farooqui are exploring different ways to bring neurodivergent and borderline children into the mainstream education system. For this purpose, an MoU has been signed with Aga Khan University Institute for Educational Development to train teachers,\u201d he said.<\/p>\n<\/blockquote>\n DEPD Sindh is running 67 institutes across Sindh, and is working to establish more.<\/p>\n He shared: \u201cPreviously there was 1 child with Down Syndrome in 2100 children. Today it is 1 in 700. There is no conclusive proof of such a rise. But the urgency to cater to these children is rising.\u201d<\/p>\n Negating the idea that society has no empathy, he said: \u201cI have seen a rise in the number of parents bringing their children to our educational and vocational centers.\u201d<\/p>\n \u201cEvery individual has 13 in-built competencies and 7 in-built deficiencies. In Down Syndrome, it is deficiency plus. But with physical, occupational, behavioral, and speech therapy, they can become productive and useful citizens.\u201d<\/p>\n \u201cSindh is the first province to implement the CRPD \u2013 Convention on the Rights of Persons with Disabilities of the UN in full spirit. The purpose is to protect the rights and dignity of persons with disabilities, and ensure equality and inclusion.\u201d<\/p>\n \u201cChale Chalo, Manzil Abhi Nahi Aayi\u201d<\/p>\n \u201cHope is the thing with feathers that perches in the soul\u201d \u2014 Emily Dickinson<\/p>\n In a session titled \u2018Chale Chalo ke Manzil Abhi Nahi Aayi\u2019 of parents of differently-abled children, a father, Saeed Anjum, who did a post-graduation in Special Education after having a neurodivergent child, said:<\/p>\n \u201cThe journey is long, but even a constant drop of water can crack a stone.\u201d<\/p>\n He shared, \u201cI have created a special room for my child, Fahd Anjum, where I exhibit all his handmade things. Whoever comes to visit us is surprised to know that his differently-abled child can do what even a \u2018normal\u2019 child cannot. Only our children can be agents of change. They will serve as role models. No one else can do this job for us,\u201d he said with commitment.<\/p>\n Another father added firmly: \u201cThere was a time, 4 decades ago, when girls were not allowed to attend school or go for higher education. But today you see girls on every front. There will be a time when society will accept our children too. The more we expose them in malls, parks, and events instead of being embarrassed about them, the better. We should present them as role models of good upbringing and education.\u201d<\/p>\n While everyone was discussing the hurt and the fear for the future, I wondered: will it take another 4 decades for another Bibi Marium, Fatima Gul, Imran, Hassan, Hooria, Rifa, or Zikra to be accepted?<\/p>\n It is a long journey to cover and a battle to fight. But it is a fight worth winning.<\/p>\n As someone quoted Fehmida Riaz there:<\/p>\n Kuchh log tumhein samjhaayenge<\/em><\/p>\n Vo tum ko khauf dilaayenge<\/em><\/p>\n Jo hai vo bhi kho sakta hai<\/em><\/p>\n Is raah mein rahzan hain itne<\/em><\/p>\n Kuchh aur yahaan ho sakta hai<\/em><\/p>\n Kuchh aur to aksar hota hai<\/em><\/p>\n Par tum jis lamhe mein zinda ho<\/em><\/p>\n Ye lamha tum se zinda hai<\/em><\/p>\n Ye vaqt nahin phir aaayega<\/em><\/p>\n\n
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