Perspective: Adjusting, adapting and empowering

By Yahia J. Elziq

Saja was 7 years old when I met her.

At that time I was working in one of the three national rehabilitation centres in the West Bank as an occupational therapist. Although this centre is not set up to handle Saja’s needs and demands as a child with cerebral palsy, we were able to provide therapy sessions to prevent deterioration in her condition. The two main obstacles that still prevent her from reaching appropriate rehabilitation services are the absence of referral mechanisms and coordination between services in the West Bank, and the restrictions on movement that are imposed on Palestinians under occupation. The specialized rehabilitation centre for such conditions is based in East Jerusalem, but Saja’s family was refused permission to enter the city.

In addition, children with disabilities in the West Bank, as elsewhere, confront a general lack of knowledge and skills about disability throughout the public and private sectors. They are also faced with a dominant perspective that regards people with disabilities as pitiable and as worthy to receive charity – but not as individuals with rights who have the same entitlements as others, and who can and do contribute to society.

In this context Saja has been lucky. After an extensive evaluation, our team developed a plan to support and improve her participation in the community. The priority for her and her family was to have her enrolled in regular school. However, in order to attend a mainstream school, she needed various environmental changes – among them, the school premises had to be physically accessible, and she needed to have a suitable wheelchair. Full collaboration from her family, school and community were absolute necessities. Saja needed integrated activities involving many stakeholders, starting from her own parents, who tended to use available resources in favour of her brother, who has the same condition, leaving her without the opportunity to develop to her full potential. 

Tackling all these issues was made difficult because of the absence of adequate national policy. There is no inclusive education programme for children with disabilities, for example, and disability-inclusive policies are not priorities for decision-makers. For these reasons, the fate of children with disabilities relies heavily on the willingness of community members to recognize that these children have the same rights as all children. When these rights are recognized, many issues can be solved – often simply by mobilizing existing community resources.

Fortunately, in Saja’s case, negotiations with the school principal succeeded, and her classroom was moved from the second to the ground floor. The teachers accepted the idea of having her in their class. By using our own networks of professional and personal contacts, we were able to get her a suitable wheelchair and, thanks to some local doctors and a health centre, her family was able to obtain free treatment to improve her eyesight. Social workers helped raise awareness of her particular situation within her family, and a psychologist supported her in overcoming her experience of discrimination.

Over just a couple of years, Saja’s situation improved dramatically as some of her health issues were addressed, her mobility improved and her self-esteem and confidence improved along with her social interactions, knowledge and life skills. As a person, I was overjoyed at seeing Saja’s progress. As a rehabilitation professional, it was highly rewarding.

Saja opened my eyes to my own ability to adjust and adapt as a professional – and to the positive impact that we therapeutic professionals can have if we adopt empowering attitudes. More importantly, she helped me to understand the value and importance of taking a holistic view of the individual child and of taking a comprehensive approach in working with persons with disabilities and their community. This is the only way to ensure that children with disabilities can have the same opportunities as other children to participate in community life.

I want to share this realization with policymakers so they can take a more empowering, holistic approach to their work. Good policies – made with the involvement of children with disabilities and disabled persons’ organizations, and properly implemented – will help to ensure that when the next Saja comes to us, she and her family will know what she is entitled to, and what she might expect to achieve – which is what every other girl of her age in her community can expect to achieve. This is the message that the Convention on the Rights of Persons with Disabilities and the Convention on the Rights of the Child give us, and that we want to promote every day.

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