"Habaybna" – for advice, community and inclusion

Looking at her today, it’s difficult to imagine that things were once very different for Reem Al Farangi. That she was once at rock bottom. Beaming and full of optimism, the 38-year-old Palestinian invites me into her office in downtown Amman and introduces her project.

It was personal concern that led her to develop the "Habaybna" website (literally: "our loved ones") – the first Arabic digital platform for the parents of children with disabilities. Habaybna went online in 2017 and has been providing important information about early recognition and therapies, financial support, self-help, awareness-raising, and everyday life with disabled children ever since.

From attention deficit disorder to Down’s syndrome, learning difficulties to cerebral palsy, the website covers a broad spectrum of disabilities. Around a thousand short videos offer valuable suggestions in easily understood language. They have so far attracted 400,000 clicks. There is a great need for reliable information in a region where therapeutic treatment for people with disabilities is not yet provided across the board.

Reem pours tea and tells me how the project came about. Habaybna is the result of the painful things that she and her husband Mohammed, 40, had to go through. They are both from Gaza, that narrow strip of land between Israel, Egypt and the Mediterranean, which has been repeatedly afflicted by military conflicts between Israel and Hamas.

As bombs rained down

It was in Gaza that, following a long odyssey, they finally received confirmation that their two sons Amro and Aboud – who were then aged four and six – were suffering from Autistic Spectrum Disorder.

For a long time, the couple had thought that the war was to blame for their children’s difficulties with speech and social interaction. At the end of 2008 and the start of 2009, Israeli bombs started falling in Gaza once again, in response to rocket attacks by the Islamist Hamas.

The Al Farangi family stuck it out and stayed in their flat while the bombs fell all around them. Afterwards, it was as if the children had been turned to stone, Reem recalls. The younger of the two boys stopped speaking altogether. And when the doctor finally gave them the diagnosis in 2011, after a lot of back-and-forth, "I was shocked and completely at a loss."

Like a dark tunnel

There was no therapy available in Gaza. "I was in the process of building up a photography studio for women." It hit her like a punch in the gut, she says. "At that point, I thought my life was over and my children would never get a chance to develop." The world looked like a dark tunnel, from which she would never emerge. And on top of that, the people around her reacted dismissively towards her children.

After the diagnosis, the pre-school refused to keep taking the pair of them. Neighbours averted their eyes and stopped their children from playing with Aboud and Amro. "There is still some shame and stigma around disabled people here, even today," Reem says. Many families fall apart under the strain.

It used to be the fathers who would leave their families, but lately mothers have been leaving, too. There are also still cases of people with disabilities being locked away or put in restraints. In desperation, Reem and her husband Mohammed searched the Internet for information, but found nothing tailored to their situation in the Middle East.

In 2011, the family managed to move to Amman, the capital of Jordan, to get treatment for the children. As a Palestinian, she got a residence permit. Healthcare is comparatively good in Jordan, and a lot of people go there from other Arab countries for medical treatment. "I felt like Alice in Wonderland."

Her boys were placed in a school for children with special needs, where they feel comfortable and their individual needs are catered for. Reem found a parents’ group at the school. "The exchange with other parents was tremendously helpful to me," she says emphatically. "They are still my network, to this day."

Having a network in Gaza would have saved her a lot of heartache. And so she came up with the idea of connecting parents in the region and making available to them information that they frequently don’t receive anywhere else. She was thinking in particular of crisis-hit regions such as Gaza, Libya, Yemen, Syria, but also rural areas in Egypt or Jordan, where parents of disabled children can expect little help. She christened the project "Habaybna" – "Our loved ones" – a name designed to show that these children are loved just as they are.

In November 2017, she won a prize awarded by Bank Etihad in Jordan for her project. With the prize money, she was able to rent an office, expand the website and employ two other people. She learned how to build a start-up during her business degree at Gaza University. She makes the relatively straightforward videos herself. 

Positive reception

The experts, parents and therapists who appear in her videos do so without payment. "We rent the studio and film there from morning till evening without a break." Her husband supports her and is principally responsible for the technical side of the organisation. Reem now also does training sessions for a Jordanian telecommunications company that wants to school its employees in dealing with disability. The funding of "Habaybna" is therefore secured for the time being. UNICEF is also interested in working with Reem.

The project has resonated with a huge number of people. "I get a lot of positive feedback from parents, from all over the region," Reem is pleased to tell me – you can see the pride in her face. Recently, she says, a mother from Egypt wrote to her: her three-year-old daughter suffers from a rare condition called Angelman Syndrome (a disability involving hyperactivity and cognitive limitations). The woman asked her for help, because she felt abandoned. Reem was able to connect the worried mother with a Jordanian woman whose child has the same disability. "They were both pleased and happy to have the exchange".

An expanded network

It is this opportunity to communicate with each other that parents find takes a huge weight off their shoulders. The grateful father of a little boy with autism writes on the website that he hopes in a few years there will be a large network of parents all over the Arabic-speaking world. "'Habaybna' has provided me with reliable information, which helps me deal with the various phases of our family life."

"Habaybna" can’t help every case. The website cannot replace a doctor, or give comprehensive information about every rare disability. But it can connect people in difficult situations, give them guidance for self-help and, with it, new hope. At the end of October 2018, "Habaybna" added another string to its bow. In free tele-coaching sessions, parents can put their questions to specialists who pass on their expertise pro bono.

"For the first time, I had the sense that I wasn’t alone on this long journey with my son," says Zeinah Zawahneh, the mother of a young boy who has cerebral palsy, after her conversation with a specialist. "I got so many tips for managing the daily challenges in life with my son. I’m a lot more confident now."

Taking an inclusive approach

The project’s most important aim is to promote a more inclusive approach, and greater acceptance of people with disabilities. At "Habaybna", the focus is not on children’s deficiencies, but on their individual potential.

All the same, there are some thorny issues that Reem doesn’t dare broach. As we broach this topic, she shuffles rather nervously on her chair. As a Palestinian from Gaza, who is only in Jordan on a residence permit, she has to be careful. And so there are no videos on her website that explicitly address the issue of violence within the family, or violence against disabled people.

Both these things exist, of course, she says, citing the example of a woman with Down’s syndrome who was raped in broad daylight in the middle of the city just a few days previously. Jordanian society is only just beginning to discuss these matters in public. But for her, as an outsider who is a guest in Amman, it would be difficult to speak openly about such topics.

"We would therefore rather talk positively about the issue, by arguing that children should be treated with love," she says, very much aware of the limits within which her project operates. There is still a lot of work to be done.

Amro and Aboud are now twelve and 14. They have developed their own interests and hobbies. While the younger boy likes cooking and anything to do with textiles, his elder brother is more interested in computers. Their disability will not be any impediment to them living their own lives. Reem and Mohammed are now convinced of that.

Claudia Mende

© Qantara.de 2020

Translated from the German by Ruth Martin