A Day with the Differently Abled (by Bina Shah)

Tuesday, April 1, 2014

This morning, the Alliance Francaise Karachi hosted a “day of recreation” (un moment récréatif) for 130 students and 70 staff members of AURA, the Al-Umeed Rehabilitation Foundation, a well-known Karachi-based centre set up by Dr. Ruby Abbasi in 1989 for children who suffer from cerebral palsy.

 

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AFK Director Jean-Francois Chenin makes friends

As a member of the AFK’s Executive Committee, I was excited to spend time with these children and the administration of AURA as they came to AFK for games, music, and food. When I was a college student I interned one summer with a British social worker in Essa Nagri who ran a playgroup for slum children with cerebral palsy through the Aga Khan Social Services Network. My work with her influenced me greatly, and led to the writing of my novel Slum Child. So it was with a sense of coming full circle that I went over to participate but also to observe and witness, and to reflect on my previous experience of twenty years ago.

Dr. Abbasi’s own son Bilal was affected by the condition, and there was no specialised centre that dealt with the problems cerebral palsy presents – postural and motor difficulties, vision impairment, and hearing and speech impairment too. It’s thought to be caused by abnormal development to the brain during fetal development, during birth, or even up until a child is two years old. So Dr. Abbasi set up AURA, but its philosophy is that its children are not disabled – they are differently abled. Disability, according to AURA, is “the lack of ability in a normal person to empathise”.

 

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Aban Jamall

AURA today operates in a custom built complex in Gulistan e Johar that gives care, treatment, training, and education to these children. It works on the BOBATH concept, which educates these children in a special curriculum alongside normal street children from the area. There’s a lot of information about what they do on its Web site, including physiotherapy, hydrotherapy, vocational training, and early intervention, and it’s worth noting that they are completely integrated on the Internet and social media, with a Twitter account and a Facebook page.

I have a brochure from AURA given to me by Aban Jamall, who has devoted forty years of her life to the organisation, and links it with the Special Olympics — several AURA children have represented Pakistan and four have won gold medals — as well as tireless fundraising efforts. But it’s never enough. “We always need funding,” she told me, pressing the brochure into my hands. With extra funds, not only does the centre operate, but they can arrange visits to zoos, parks, and theatre, and hold picnics and sports meets for the children.

Today’s day out was arranged free of cost by the Alliance Francaise, but it was more than the premises that made the day so special. The entire staff of the Alliance, groundsmen, gatekeepers, guards and gardeners all came to play with the children. The music teacher, Aisha Tariq, played the piano for them and they sang songs to her accompaniment. After she finished, one of the students crawled up to her, touched the keys of the piano, asked for the microphone, then started to sing a song all by himself, in perfect key.

Children played games, threw balls, wore party hats, and just hung out. When the day was at its hottest, they had drinks and snacks. Then they took a rest and hung out before getting ready to go home for the day. It was in the last hour of the program that I reached the Alliance and met the children and the staff of Al-Umeed and got to take a few photographs.

 

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The children worse clean, neat uniforms, and had much more equipment and many more helpers than the little playgroup in the slum had done. But this, of course, is the end result of years and years of dedicated work by an organised, trained team. (Our tiny group met three times a week in the Essa Nagri church, yet it was still such an event in the area that the other children of the slum peered in through the windows and begged to be allowed in to play as well. Guerrilla rehab, helping them play on balance balls and showing them how to comb their hair and just sitting them in our laps and holding them sometimes just because they needed physical affection.)

Still, it was the same as I remembered from twenty years ago when meeting the children today. The same twisted bodies, some unable to hold themselves upright, others needing to be strapped into their wheelchairs so they wouldn’t fall out. The same intelligent eyes and wide, friendly smiles, and the eager clasp of their small hands on yours to say hello or get your attention. Children who drooled because they could not control the muscles of their face, or who called out in moans or wails because they had no control over their vocal cords. Children who laughed when they tossed a ball to you and their friends, who wanted to see your glasses or smile for a photograph, then laugh delightedly when you showed them their image on the screen.

 

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Ahsan, the O-level student

But there were a few new things. Like the handsome teenager in the wheelchair, Ahsan, who spoke to me in English and asked me if I worked at the Alliance, then nodded with enthusiasm when I told him I wrote for the newspapers. He told me he studied in school, and was studying for his O-Levels.

And there was Sara, who knew how to operate a computer using her feet.

And Erum, who had the most beautiful smile which shone bigger and brighter when I took her photograph and showed it to her on my iPad.

 

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Getting ready to go home

And Anousha who was better at throwing a ball than at catching it.

And little Aisha who seemed pleased to know that my middle name was Aisha, too.

By one-thirty it was time for the children to go home – they’d been at the Alliance since nine in the morning, and van pickups for the day out had started at six am. The staff helped the children back into their wheelchairs, organised them according to what part of town they lived in, and put their equipment – wheelchairs, cushions, boards, stability balls – onto the roofs of the vans and buses. I shook hands with the helpers, mostly women, but some men who helped with the older boys.

“Thank you for having us,” said one of the administrators, which embarrassed me – we were the ones that should have been thanking them, which we did. Profusely. And as the vans rolled away, I could feel my heart thudding in my chest, and I marvelled at how it had turned from a block of ice into a melted ocean in the space of only an hour.

 

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An article by Bina Shah originally posted on her blog.

Bina Shah on Twitter

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