In the once-besieged Damascus suburbs of Ghouta and Douma, people with special needs – particularly the blind and paraplegic, and those with cerebral palsy – are being denied their regular medical care, services and equipment.
In response, a group of young activists established an NGO called Basmal Amal (which translates to “Imprint of Hope”). Their goal is to shed light on the situation of special-needs Syrians and to provide them with recreational and educational therapy.
Despite the dangers of living in one of the more violent areas around the capital, “many families with a special-needs member have stayed in Ghouta, either because moving was too hard under siege, or because it’s too expensive to live in Damascus,” says Ghizwan al-Hakim, a psychiatrist working with special-needs people in his clinic in Douma. “In this city, there are about 400 people with special needs. That’s one out of 1,000.”
Originally sponsored by the Unified Relief Council in Damascus province, the group has been self-financing for the past five months. Here Hakim and its president, Mohammad Hassan al-Musri, explain the importance of their work.
Syria Deeply: When was the association established?
Mohammed Hassan al-Musri: Basmat Amal was established in January 2013. We started small but then grew to include a director, a group of individuals to keep records, three teachers and five women with special needs who did embroidery and knitting, painting and drawing. They were great at teaching and running activities and soon started teaching those around them.
There is also a section for men that includes three employees and a director, and they all work on organization, security and providing for the association.
The association is divided into three divisions: A division for people with special needs, the Amal school for psychological support, and the division to teach braille to the blind.
Syria Deeply: What are the cases you’ve had at the center?
Musri: Cases of cerebral palsy, amputation, mental disabilities, paraplegia, Down’s Syndrome, autism, patients with mental illnesses … we currently have about 100 cases.
Many of the people who came to us were in a dire psychological state. We tried to get them out of it through activities such as sewing and fashion design and crafts and weaving on a hand loom. That’s when their talents started showing. We started training them to adapt psychologically by telling them they’re equal to normal people in all aspects.
Doctor Hakim trained people with special needs and their families, to highlight their role in society and to boost their confidence, and to teach their families how to handle them. We are very careful not to treat people with special needs with pity. We need society to be accepting of this group of people.
Syria Deeply: How do you identify people with special needs?
Ghizwan al-Hakim: It’s mostly people suffering from mental disabilities. Sometimes they also suffer from chronic physical illnesses, like heart failure. The most common are people with Down’s Syndrome, as well as autism, cerebral palsy and Joubert Syndrome. We also see congenital disorders, dwarfism, congenital paralysis and congenital absence of the hands and feet. All of them need special care and attention.
For patients with physical needs, we provide prosthetics, crutches and wheelchairs. Because of the siege on Ghouta it’s been difficult to get the necessary equipment, so we established a local workshop to make prosthetics using whatever material we have, including steel wires, mannequin limbs and sponges.
Syria Deeply: Are those with special needs aware of what is happening around them? Are they aware of the war?
Hakim: Yes. Those who are most aware are the autistic patients. They face a great crisis, because they never like change and prefer a very routine life. Even their games are routine-based and their rooms have to be arranged in a certain way. Unfortunately many have now had to change their place of residence or were displaced with their families, finding themselves in new environments that don’t look anything like the ones in which they were brought up.
Sometimes we’ve had to give them medication because they get frantic and start screaming. Some have actually harmed themselves. They bite themselves or bash their heads against the wall, so we give them tranquilizers and anti-psychotic drugs. We taught them to adapt psychologically by placing them in a supportive and comfortable environment and then slowly introducing change. We would do this systematically until the change became acceptable to them. Other cases are much easier than autistic patients, because they don’t have a problem with adaptation.
A patient’s bathroom could be in another building than the one in which he lives, due to the family being displaced, which causes discomfort to them and their family.
Syria Deeply: You also work with the blind. What are the facilities available to them?
Musri: Our division to teach the blind is the first of its kind in Ghouta. Initially it was just a pilot program and included just a few blind residents. We were able to provide them with braille reading material by February 2014. But we still have shortages of other special braille equipment, such as writing tools and special paper: we only have one of each kind for 17 students to use. We need 17 braille writers and 17 braille math workbooks.
Syria Deeply: What happens after they’ve been in your care?
Musri: We provide them with work opportunities, either through setting up sewing workshops or by selling the products they have made and setting up exhibitions where they can show their work. One of these exhibitions was titled “Be to be with you,” which was held in Douma.
So far we’ve managed to provide paid job opportunities, where the average income is 10,000 Syrian pounds ($60) per month. I wish the amount were more. We also help those who can’t work by providing monthly stipends that reach up to 5,000 pounds ($30), in addition to clothes and food.
Edited by Karen Leigh.