Abu Dhabi, UAEThursday 21 November 2019

Project will help people with Down syndrome tell their stories

Teachers, therapists and counsellors to receive training as part of year-long programme

Dr Manal Jaroor with her son Mahmoud Jaroor. Satish Kumar for The National
Dr Manal Jaroor with her son Mahmoud Jaroor. Satish Kumar for The National

The head of a non-government Down syndrome centre wants to hear from young adults and children with the condition as part of an initiative to share their story with the rest of the world.

Dr Manal Jaroor, chairwoman of the Emirates Down Syndrome Association has unveiled a programme to train therapists, counsellors and teachers at support groups and Down syndrome associations across the country so they can help their pupils speak for themselves.

The overall aim is to improve the quality of life of people with Down syndrome and understand the challenges they face.

“We first need to train facilitators who work with young adults and children with Down syndrome so they can help them express themselves,” said Dr Jaroor, who is a retired paediatrician.

“We want to know what people who have Down syndrome are thinking, dreaming. We need to understand what they need. We want to know what is upsetting them and what makes them happy. We want to know what they feel inside and, for that, we need to train people who work with them.”

The year-long advocacy training will begin in September and is part of the preparation for the World Down Syndrome Congress in Dubai next year.

People would call him ‘Mongol’ and ask about his ‘suffering’ - but now no one uses that word

Amal Jaroor

More than 1,000 education, healthcare professionals, specialists and disability groups are expected for the three-day conference in November 2020 that will discuss social and legal protection and cultural integration.

The UAE is the first country in the Middle East to host the congress that is held every two years.

The advocacy training is part of comprehensive plans to transform Dubai into one of the most disability-friendly cities in the world by 2020 and to empower people of determination with equal rights.

There are more than 500 families registered with the UAE association drawn from about 40 nationalities.

People with the condition volunteer at sports and charity events but, like in most parts of this region, they rarely speak before large gatherings or conferences on disabilities.

The training aims to change this.

Experts hope speaking up will help the community be heard on the national and global level on subjects from inclusion and education to employment.

“Some people in our country with Down syndrome can express themselves but we want this to extend to many more people so we can hear from everyone,” Dr Jaroor said.

“When people hear success stories it will encourage them to do more. Also, by listening to them, people will realise there is more work to be done.”

Dr Jaroor has been a vocal proponent of early intervention for decades and set up a support group for mothers in 2005; the Emirates Down Syndrome Association was founded a year later.

She draws from her own experience. Her son Mahmoud, 20, who has Down syndrome, studies in a normal school and is set to finish next year.

“I want to go to university. I want to work, get money. I want to drive a blue car,” said Mahmoud, who won gold for the sport bocce at the Special Olympics World Games in Abu Dhabi this year.

He is passionate about photography and has an interest in robotics.

Mahmoud is a favourite of his elder sisters Amal, 24 and Marwa, 22.

They remember a time when passers-by would stare or ask hurtful questions.

“People would call him ‘mongol’ and ask about his ‘suffering’ but now no one uses that word,” said Amal, who carries brochures about the association.

“I give the brochures to families who approach me because they want to know more.”

Attitudes have changed in the UAE, with more understanding over the past few years. But the family still sometimes encounters a wide-eyed reaction when they go out.

Mahmoud has a unique style of addressing people who turn around to gawk, showing how with early family support, he is already his own best advocate.

“When people stare with their mouth open, we don’t feel comfortable. But Mahmoud goes up to them, smiles and says, “Hi. Hello. How are you?” said Marwa.

“This breaks through all the boundaries because he is so open and friendly.”

Updated: July 28, 2019 08:24 AM

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