Meet the woman challenging Arab notions of disability

It was 2008 in the Gaza Strip. When winter arrived, so did the Israeli warplanes.

Reem Alfranji lived in a second-floor apartment with her husband, Mohammad, and two sons – five-year-old Aboud and Amro, a toddler.

During glass-shattering uninterrupted bombardment, the family would stay at her uncle’s downstairs, where the vibrations were less aggressive.

“The children were petrified,” she says. “There was no electricity, and everybody would be scurrying around.”

By the time the three-week assault was over, Aboud had stopped speaking entirely.

It was the end of two conflicts: one physical, another deeply personal.

The 27-year-old mother had already spent years trying to understand why her son could only utter a few simple words – “mama” or “teta”, meaning grandma in Arabic. The child could not sit still for more than a few minutes and kindergartens refused to accept him, claiming he was “too naughty”.

In Gaza, to say that you have a child with a disability is very shameful. They see it as something humiliating.

by Reem Alfranji

Frantically searching the internet had led her nowhere. There were few studies on child development in Arabic.

Doctors in the resources-strapped enclave had told her many children start speaking at the age of six. A typical child, however, starts forming sentences between two and three.

“They told us he was developing very well. They said a lot of kids experience delays in speech,” she says.

After the Israeli assault, she sought further opinion from a doctor she had recently heard of.

That doctor, the head of a public children’s hospital, confirmed her worst fears – that Aboud had difficulties.

Disbelief washed over her when the doctor said Amro, too, needed special care.

“He told us that both my sons have developmental disabilities,” she tells Al Jazeera. 

Finding resources in the Arab world, where disability is taboo, proved challenging. There were no occupational therapists in Gaza; no schools wanted to take Reem’s children in.

Disapproving looks and rigid minds added to her burden, making her uneasy and defensive.

“In Gaza, to say that you have a child with a disability is very shameful. They see it as something humiliating. During large gatherings, they would blame my kids whenever something went wrong or something was broken – they would tell them ‘stay away!’

“I started to feel as though I was in a warzone.”

Social stigma

Abandoning dreams of living in Gaza near relatives, the family packed their bags in 2010 and moved to Amman to start a new life in the hope of better treatment.

In the Jordanian capital, a community of mothers with disabled children welcomed Reem as one of their own.

She enrolled Aboud and Amro in a special-needs school, forged relationships with specialists, and joined a support group for parents of disabled children, offering guidance to mothers across Jordan – including the poorer areas.

But the more involved she became, the more she realised how much work needed to be done.

One billion people worldwide, or 15 percent, are estimated to have a disability. Meanwhile, three percent of the Arab region’s 407 million people are estimated to be disabled.

But Charlotte McClain-Nhlapo, global disability adviser for the World Bank, says government-conducted surveys often narrow the definition of disability – considering only those with severe impairments.

There is very little understanding that disability is something you have to deal with for life. You learn to adapt to it. It is not an illness and it is not contagious. I think we are living in a society that's very judgmental.

by Serene Qubain, mother of a disabled child

Social stigma can also affect statistics.

“People don’t want to disclose that they have a child with disability. To some people in many countries, it’s still sensitive,” McClain-Nhlapo tells Al Jazeera.

“There remains serious lack of knowledge and awareness among parents in society and … people are afraid – they don’t know what to do when they have a child with disability, they don’t know who to turn to. They do not see people with disabilities in the mainstream. For them, it is a very shameful situation.”

In rural areas, where illiteracy is high, access to information is further limited, says McClain-Nhlapo.

‘Do you want to embarrass us?’

Reem met several women in Jordan’s rural areas who had been ostracised.

“One of the mothers here, when she posts photos with her [disabled] daughter, the family tells her: ‘why do you keep sharing her pictures? Do you want to embarrass us?’ says Reem.

“The worst is when it is a combination of ignorance, disability, and poverty. It is very common for communities in those areas to blame the mother for her child if they have a disability – and the men often file for divorce”.

Serene Qubain, a Jordanian mother, believes there is a common misconception in the Arab world.

“I think the typical understanding is that if you are disabled, you are sick,” she tells Al Jazeera.

Her nine-year-old son, Rakan, has the intellectual ability of a one-year-old, and cannot speak. 

“When people see him in public, they say ‘May God heal him – I hope he recovers’ to which I respond: ‘He’s not sick’.

“There is very little understanding that disability is something you have to deal with for life. You learn to adapt to it. It is not an illness and it is not contagious. I think we are living in a society that’s very judgmental.”

Team Hero: A pioneering cartoon

Having settled her children in a supportive environment, Reem wanted to focus on raising awareness.

In 2013, she teamed up with a film producer, Khalid Abusharif, to create Team Hero – a cartoon about children with disabilities. The show will be the first of its kind in the region. 

“I decided to feature their lives in a positive way,” she says.

The first season, expected to air on a major Arab broadcasting network in March, was made possible with funds from organisations including UNICEF and the Jordanian investment NGO Abdul Hameed Shoman Foundation.

The show is based on Aboud and Amro.

“We made it about two brothers. One of them, Waseem, has the same disability as my kids. The other, Rashed, is a typical child.

“They move to a new neighbourhood and meet other kids who are curious about Waseem. They start to think – why does he not speak like us? Why doesn’t he act like us? How does his brother understand him? Are they from another planet?

“In the first episode, they start to understand what it means to be a child with special needs; that their minds work differently, but that they also have hobbies and special skills.

“They go on adventures and meet other children – a boy with Down’s Syndrome, a girl with learning difficulties. We included other topics such as children’s rights, racism and bullying, to show that we can live in an inclusive society – whether kids have disabilities or not.”

Working with disability specialists, Reem crafted the script to accurately portray various disabilities.

Hala Ibrahim, a developmental disability and autism specialist in Jordan, explains that children with developmental disabilities “are innocent in their understanding of others – you have to teach them about how people may be intending to harm you or take advantage of you”.

Education is largely geared towards teaching the child to survive in their community as independently as possible, she tells Al Jazeera, adding that social exclusion is particularly damaging.

“Society does not need to always make them conform to our norms and our expectations,” she says. “We also have to make allowances [and understand that] we’re making it harder on them by expecting them to behave and function in society like any other person.”

‘I realised I love them even more than before’

Frustrated by the lack of information online, Reem and her husband have also launched an Arabic-language website that she hopes will become the go-to resource for Arab parents of disabled children.

Named “Habaybna” or “Our loved ones”, the website offers short videos by specialists providing tips and guidance to parents. A directory of institutions and doctors in Jordan is also planned, which she hopes to expand to other countries in the region.

“We chose ‘Habaybna’ because we believe that our children – regardless of their capabilities – are still our loved ones.

“As parents, you go into denial when you first find out. You are shocked. You start to ask: Why me? Why did this happen?’ You start to think only about the challenges.

“But now, after I received all this support – and when I developed all these new skills on how to cope with my kids – I realised that I love them even more than before. They are so pure.”

Follow Zena Tahhan on Twitter: @zenatahhan