|File photo by White Star|
Mehtab Fatima blames herself for the everyday struggles of her 24-year-old son, Hasnain Rizvi, who developed cerebral palsy soon after his birth. “Let me be straightforward: it is my punishment for having laughed and teased special children and their families when I was young; God has put me in testing times now,” she argues.
Hasnain was born very healthy, narrates his mother, but due to a lack of oxygen, he developed cerebral palsy. He cannot speak, but he understands when people come to see him and pretend to sympathise with him. Some even have the audacity of saying, “God bless us all; please save us from this disability” before Hasnain and his family.
“What irritates me is that people do not understand that even if Hasnain is not ‘normal’, he does understand when people act in such disgusting ways,” says Fatima.
“Hasnain not only understands if the guests say anything horrible about him, he also reacts aggressively. Sometimes he cries, and it always breaks my mother’s heart,” adds 20-year-old Askari Rizvi, Hasnain’s younger brother.
Living with special people is not easy; some blame fate, some blame themselves and give into despair while a few rise to the challenge
As Hasnain rests in an adjacent room, Askari narrates that it was only as a conscious adult that he began understanding Hasnain for who he is. “In my childhood, I used to make fun of special people, including my brother. But now I understand that persons with disabilities are also human and have every right to live. It is our responsibility to help them with their living,” he says with regret in his voice.
Mehtab Fatima has done everything possible for her special child, now a grown-up man, who can only lie in bed all day long. She takes care of everything; from feeding her special son to bathing him, even keeping troublemakers away from him.
“I have provided him everything he needed; he has a separate room with air conditioning, uninterrupted power supply, just to ensure that he does not get aggressive, uncomfortable or irritated by anything,” she says.
Beyond making these arrangements, there isn’t much else Fatima can do. “My husband often says to me jokingly that when you die, your coffin will be followed by your son’s coffin, because your life is intertwined with his. I am Hasnain’s lifeline and when I die, Hasnain will die with me too.”
“My child was two when I finally got to know that he is not normal. By the time he was four, all he could say was Mamma, Papa, Hello and Allah,” says Tehmina Ahmed*, a 45-year-old government school teacher and mother to four.
“Farrukh was my third child. He was born normal. When he was about to turn two, he had had extreme fits. That damaged his brain which now couldn’t function properly. He is unable to understand things well. He can’t speak much,” she narrates.
Farrukh always looks down when he walks, which makes him vulnerable to falling or tripping over things, but it is in part to never have or maintain eye contact with anyone else. According to Tehmina, much of this is due to a lack of confidence — bred not by the family but reinforced by ideas and attitudes around him. This low self-esteem has been eating at him from the inside for years.
Tehmina admitted her son to a renowned school for special children, but in her opinion, their administration did not really put in much effort with the children enrolled. “All they would teach my son was alphabets and numbers,” she says. “That did not help my child grow up mentally. And that is why I decided to change schools.”
“My husband often says to me jokingly that when you die, your coffin will be followed by your son’s coffin, because your life is intertwined with his. I am Hasnain’s lifeline and when I die, Hasnain will die with me too.
But getting her son admitted to a regular school, and then keeping him there, was an exhausting experience. After two years of persistent complaints by the school administration, Tehmina was asked to stop sending Farrukh to school, as he was unable to grasp things other pupils could easily do.
“I then decided to admit my child to the same school where I work so that he could remain in sight,” says Tehmina. By that time, Farrukh was already eight years old. Five to six years of his life had been wasted because he did not receive the education that he should have or needed to.
But when Farrukh started going to school with his mother, she started meeting with stiff resistance at the hands of friends and colleagues.
“When I asked a colleague to take extra care of Farrukh in class, since other students might not be able to understand him or his condition, she retorted that a special child couldn’t possibly study in this school and that I should remove him. I simply asked her a question: what would you have done had Farrukh been your child?”
Today, when Tehmina makes her child sit with her and study in class, other students surround them, peeping in from the windows of the classroom, and making a cheeky or offensive remark or two. She prefers sitting in after school hours to avoid any nastiness. “After all, these kinds of children come from the same society which does not accept children like mine. What else can I expect?”
Tehmina is hopeful that her child will one day begin learning things fast. Farrukh’s doctor has imbued her with immense hope, which strengthens her determination to carry on living.
“No one understands that these kids, such as mine, are a lot more sensitive who want to love and be loved,” says Tehmina, with a heavy voice, yearning for a world where her child is accepted with all his weaknesses and sensitivity.
But will that day come when society accepts her child?
“I think before society, such kids need be accepted by their own family, their siblings and parents. As for Farrukh’s case, he was considered a burden by my husband. What do I expect from other people?”
In such circumstances, it is only human for a mother to break down.
“Farrukh is always the first one in the family who comes to me, cuddles me whenever I am giving up on life. He always stutters: ‘Mama, tell me what happened? Who made you cry?’”
For Zain Ali respect, or lack of it, is at the heart of the matter.
“I lost my eyesight when I was 14. Life changed drastically, I thought it had ended,” says Ali, now a 24-year-old student at the University of Karachi’s English Department.
As he keeps talking, sitting on the stairs of his department, people peep with inquisitive eyes, appearing surprised as to what he is discussing with such sheer concentration. Ali fortunately cannot see their intrusive curiosity.
When asked what worries him about the future, he says that the pursuit of a livelihood after graduation keeps his mind engaged.
“Lately, a private bank and a fast food chain company have introduced jobs for visually-impaired persons. This is indeed a laudable initiative. At least, they are doing their bit. But tell me, once we have completed our Masters, are we expected to go and apply for a waiter’s job?”
Indeed, the options for dignified employment are far and few.
“Kenneth Jernigan of National Federation of the Blind was right in saying that the themes which have been imbued in literature and thus in society about blind people are blindness as total tragedy; as foolishness and helplessness; as punishment for sin; or as an abnormality. It is for these varied reasons that society never accepts us. Even in literature we, the blind people, have been portrayed as persons who are not normal,” laments Ali.
Perhaps it is because of the everyday struggles of the differently abled that young mother Neha* was squeezed in the trickiest of dilemmas: to give birth to a child already diagnosed with microcephaly or to abort the process. It was her first pregnancy, and that too, after a lot of years spent in prayer.
Neha knew this dilemma would shape her life for many years; it was a decision that was going to be uncomfortable either way. She eventually chose the latter option, to abort, in part because she didn’t have the strength of bringing that child into the world and caring for him, and in part to save the unborn child from a life of misery.
“I was not as strong to live my life raising that child,” says Neha. “It would have meant living and dying at the same time, in the everyday struggle of raising a child with an abnormality. I was not that strong.”
The writer tweets @FawadHazan
Published in Dawn, Sunday Magazine, June 7th, 2015