In conversation with Ingrid Gercama

Given that young people with a disability face considerable discrimination and stigma in the Palestinian context, we wanted to prioritise sharing the findings of our research with the local community to generate a discussion about potential local strategies to enhance young people’s wellbeing. In April, 2018, the Gender and Adolescence: Global Evidence (GAGE) programme held a workshop in Jericho City, West Bank, to 1) to present the main findings of GAGE’s recent participatory research with adolescents with disabilities, 2) to provide a forum for some of those adolescent (and their parents) to tell their stories to government officials and community leaders, and 3) to generate practical community solutions to improving lives.

Mr. Ameen Enabi, the Director General of Disability Department at the Ministry of Social Development opened the workshop by noting that “the issue of people with disabilities is very important.” He thanked the young people who participated and explained that the research is in line with the Ministry’s interests and will help to set goals and develop plans for achieving them.

At the workshop we highlighted the following key points from our research:

• It is challenging for children with disabilities to go to school. Buildings are poorly adapted. Transportation is expensive. Boys in particular face a great deal of verbal abuse from other students and teachers often fail to make any accommodation for what children can and cannot do. For example,  they may refuse to allow students with disabilities to have extra time to complete assignment.
• Boys with disabilities enjoy more mobility than girls with disabilities. One of the mothers remarked “my neighbour’s son plays all day on the street in his wheelchair while my daughter can’t do that because she is simply a girl”.  Girls’ lack of mobility means that very few have access to friends and most spend them time inside alone watching TV.
• Girls’ freedom is limited even online—due to parental fears they will be exploited. One of the fathers stated: “I can’t give her a mobile phone and allow her to use the Facebook because this puts her at risk and other people can easily exploit her because she is a girl”.
• Marriage options for boys and girls with disabilities are completely different. Boys not only assume they will marry, they assume that they will marry a woman without a disability, so that she can care for them. Girls assume they will never marry. Indeed, the very question was ridiculed. “Who would want to marry a disabled woman?!”
• Stigma directed at young people with disability is extreme and few receive any psychosocial support—formal or informal—to help them deal with their feelings of exclusion.
• Girls, due to their more limited access to friends, are especially left to struggle with their feelings on their own. Journaling is not common response among girls, but for the few who use it as a technique—it is powerful. One girl explained, “I write my diary in this notebook. This book is everything to me. I feel very happy when I read it, as if I am in a different world. When my sister got married and left me, I was very sad and I wrote about my feelings. I also write songs, and I write when I’m depressed. This notebook became more than a book to me, it has been with me since I was in the sixth grade and I’m now in secondary school”.
• While adolescents with disabilities understand the importance of getting a job and working to support themselves, “today, in our time, everyone needs to depend on themselves so that they won’t die of hunger. We are now in an age where we have to be self-dependent,”  none know of any programmes to help older adolescents learn vocational skills or become economically independent.
• The discussion that emerged afterwards was very rich.  One Women’s Association member emphasised that: “We should realise that there is real fear for girls. We are living in an Eastern society where what the parents assert – fear about their girls’ safety — do actually exist”. Another, from the Palestinian Medical Relief Association, agreed that adolescents with disabilities “need to be self-dependent”—and yet there are few services available to them. A community activist added that the most important thing was to address the stigma surrounding disability. “We must work towards increasing awareness around the persons with disability and that they are human and have rights.”

The workshop then heard from an adolescent girl with a visual impairment.

Alia[1] is 14 years-old and in her first year of public school—after years in a private school for the blind. She has found the transition from private to public school to be very difficult.  “On my first day of school” she explained, “I was terrified and very scared”.  While she is no longer scared, she is still frustrated and lonely. The school is not safe for her to move around alone and she is rarely offered help.  After falling many times, breaking both a tooth and a hand, she has mostly given up on all but required movement and often spends lunch and recess in her classroom because it is safer to stay put.  She also reported that her teachers are not really equipped to teach the blind, that there had been a long delay in getting braille books, and that she is prevented from using her braille typewriter because other students find the sound irritating. “They asked me not to use the typewriter because it is annoying. I don’t like this,” she reported.  While the teachers at Alia’s school have offered to take dictation, and let her give verbal responses that they then write down, Alia wants to prepare her work “by myself”.

The workshop then heard from Ms. Nasim Mohamed, the mother of three sons with—in her own words—special needs.

​“I do not want to describe my children as having a disability, and this is my right. I tend to use special needs, ” she explained.  Her oldest son, now 17, is blind. Her 11-year-old son is both blind and autistic. Her youngest son has developmental delays. Ms. Mohamed explained to the audience that she has tried very hard to help her oldest son succeed in life. “My first challenge was to find a school,” she reported. “I sent my son to a school in Jordan for 3 years, and then I sent him to Helen Keller School in Jerusalem.” Her efforts have paid off. “My blind son is in a football team in Ramallah, he is a member of the World Blind Union, and he is working with a blind Italian and another American student on developing a video game for the blind.”  Ms. Mohamed is frustrated, however, that she has been the sole driving force behind helping her son succeed. “I went through all this without anyone even trying to approach me or give me any information.”  She continued, “When I asked any official or institution about the services, the first response I get is to give me financial aid.”  Ms. Mohamed is insistent that while her husband has only seasonal work in the tourism industry, she does not want money for her children, she wants a place for them to learn. With no schools for children who have both autism and a visual impairment, Ms. Mohamed is now enrolled “in courses and learning nursing” so that she can better support her son on her own. “Persons with disabilities are not a burden on the society, it is the society that is a burden on them” she concluded.

The expert panellists weighed in on both stories and agreed that “there is a clear failure at the level of governmental institutions starting from the top of the pyramid”.

Workshop participants were then split into three groups for discussion.

One group discussed the challenges that adolescents with disabilities face in terms of education. It was agreed that buildings were poorly adapted and teachers generally had little disability-specific training. The group proposed that a cost-effective, quick-win solution was organising students to help each other—and reaching out to parents to encourage their children without disabilities to support those who need extra assistance. “It is shameful that Alia can’t go alone to the cafeteria and is not receiving any help,” noted the group. Participants also called for more vocational training, so that adolescents could learn skills that would facilitate the eventual economic independence.

Another group discussed how to better meet the psychosocial needs of young people with disabilities—though the difficulty of accomplishing this goal was clear from the outset, with different agencies and ministries arguing that actions were generally outside of their purview. The group recommended that school counsellors provide individual and group sessions to young people with disabilities, assign “rotations for students to accompany the disabled children to the cafeteria”, and make a number of minor modifications to reduce the odds of abuse (e.g. let them leave for recess 5 minutes early). They also called for “direct interventions” with families and communities to provide information and reduce stigma.

The final group discussed the provision of social work services and suggested that universities, local communities, NGOS, and government agencies work towards developing plans to reach more children and families with services.

The workshop was closed by Dr. Kamal Salamey, a lecturer at the Al-Quds Open University, who is implementing a project called ‘Together We Challenge Disability, the National Initiative for Eliminating Disability.’ He noted that in Palestine, the disability prevalence rate is estimated to be 7%–though that is generally considered low because stigma and shame prevent parents from having their children diagnosed. Unfortunately, he added, a failure to diagnose children in a timely way prevented many from receiving the services that would head off more permanent consequences of disability.

Dr. Salamey made three key points. First, he stressed that “there is a need for a collective responsibility” for those with disabilities. The burden of adapting spaces and environments should never fall on individuals or even families. Society should work together to promote inclusion. Second, he argued that “knowledge is crucial”—especially for mothers, as it is through them that children are able to receive the diagnosis and early treatment that can improve outcomes. Third, he noted that adolescence is “a very critical stage” of development, driven by questions of “who I am”. Dr. Salamey highlighted the importance of GAGE’s work with adolescents with disabilities “because it emphasises the right of the persons with disabilities and their role in building their homeland”.

[1] Names have been changed