DISABILITY IN DUHOK: A Practical Day for HandSAP
Last week, our HandSAP team left Dohuk city for a camp in the Zakho district of Iraqi Kurdistan. The boot and back seat of their car were full to the brim with stacks of multi-coloured soft floor mats, safety netting (made to measure by our team), an over-sized teddy bear, and a small deconstructed wheelchair. The team was both excited and apprehensive, they set off in hope that their car full of goodies and a single day’s work could help change a young boy’s life.
Our HandSAP programme usually provides financial aid to those requiring expensive surgeries, chronic medications that aren’t readily available, and transport costs associated with treatment attendance. The team surveys each potential beneficiary, referred to them by one of our doctors, and subsidises that which the family is unable to provide. However, some of our cases require a more personalised form of support, cases like Murad.
Murad (names have been changed) is a 16 years old boy who has spent most of his life tied down by his wrist inside his parent’s caravan. Diagnosed with epilepsy and severe intellectual and physical disabilities, his parents both didn’t understand his condition and were fearful that, when left unsupervised, he would cause himself injury. Their fear was justified, Murad’s older brother who experienced less severe disabilities, had passed away the previous year from third degree burns and shock after an unsupervised incident with a boiling pot of tea.
There is very little cultural and societal awareness of disability in Iraq. PWDs (persons with disabilities) experience extensive discrimination and face multiple barriers that hinder their effective participation in society (UNOCHA.com). Most children with intellectual and physical disabilities do not attend school and there are limited facilities available to support them. Most children living in camps are only able to attend school every other day as there are not enough teachers, or large enough schools, to facilitate them. Those with severe disabilities, such as Murad, experience drastic forms of isolation and little to no participation in activities and social interaction.
Although PWDs experience high levels of exclusion globally, none more so than in post-conflict environments. Decades of conflict have severely disrupted social support systems in Iraq and Iraqi Kurdistan and this has had a hugely disproportionate effect on persons with disabilities.Damaged infrastructure, facilities and limited resources often mean PWDs are left forgotten. Even though the legislation protecting the rights of PWDs in Iraq has improved, there is very little implementation of that legislation (the 2013 Care of Persons with Disabilities and Special Needs Act). There also are very few public services available that are capable of meeting Murad’s basic medical and rehabilitative needs.
Murad and his family live almost an hour’s drive from our closest mobile clinic location and 2 hours from our permanent health centre at Dawoodia. His parents, like many displaced people, are unemployed and have no access to transport other than taxis, many of whom would refuse to take Murad on a longer journey. Barriers and discrimination toward disability in Iraq often reaches beyond general societal and cultural norms and into the medical sector. Murad’s medical report simply states ‘mental retardation’. A term that has been excluded from European medicine since 2013 due to the negative connotations, offence, and misunderstandings associated with the term. The Iraqi medical system does not have the facilities required to investigate and provide a full diagnosis to people like Murad and people with disabilities are often overlooked by humanitarian organisations due to an ongoing lack of information on the prevalence and needs of PWDs in Iraq.
In 2018 our HandSAP team was visiting another supported case Murad’s camp when his father approached them. Immediately, the team referred Murad to our doctors at Dawoodia, helping to organise a time and transportation to an appointment. There, Murad’s family received medication to help control his seizures, creams for his bedsores, and information and advice on how to manage his disabilities. However, STEP-IN is only able to provide primary healthcare and as such, our team referred him to a local neurologist. The combination of incompetent local healthcare professionals combined with the fear and lack of understanding in his family meant that Murad was then overdosed on the antipsychotic rispiridone and sedatives so he remained docile, unable to talk and unable to move or support himself. Our medical team continued to work with Murad and his rispiridone dosage was halved. Within two weeks he was crawly and managing to walk with assistance.
In the knowledge that the family may yet revert back to overdosing Murad to control his erratic moods our HandSAP team then went one step further. Having seen that Murad’s mother tied him down out of fear and a perceived lack of options, HandSAP decided to build a soft play area in the family’s living room. The play area could not be a permanent fixture as the small caravan houses a larger extended family. It had to be secure enough that Murad’s mother could leave him to tend to her other children without worrying about his safety and entertaining and comfortable enough that Murad’s at-home situation improved. As such we covered the walls and floor in soft colourful padding and fixed a detachable wall-to-wall net across the room. The addition of a soft bed in the corner and a large bear provided by the STEP-IN team made all the difference!
Further to the soft play area, and with the help of the Free Wheelchair Foundation, the HandSAP team also brought Murad a wheelchair! Our ever-inventive team fashioned him a support belt out of wide bands of elastic as Murad still has difficulty supporting his own torso and Murad managed to sit in his wheelchair (despite his younger siblings trying to steal it for themselves). This wheelchair will make the biggest difference to Murad’s life. It will make transportation easier for both Murad and his mother, who frequently has to carry him between rooms, and means that Murad can finally sit outside his caravan and be surrounded by his family and younger playful siblings instead of being left alone in a darkened excluded room, where his company is a television he cannot understand.
The number of people with disabilities living in camps in Iraqi Kurdistan remains largely unknown. Many families with members experiencing disability do not declare them due to social stigmas and lack of understanding as to what constitutes as a ‘disability’. The most commonly identified are those with visible physical disabilities and deformities, such as amputees. Intellectual disabilities, on the other hand, often remain hidden or unidentified. War, conflict, inter-family marriages, increasingly prevalent mental health conditions, and high levels of pollution contribute to Iraq’s growing disabled population. In 2015 the WHO estimated the number of PWDs residing in Iraq to exceed 2 million but current estimates suggest that number has grown drastically.
“In recent years, the approach of disability has been steered away from a medical understanding towards a social one. This suggests that disability arises from the interaction between people with a health condition and their environment.” – WHO, Rehabilitation and Disabilities.
It is our hope that improving Murad’s interaction with his environment will, in turn, improve his quality of life. At a stretch we hope that, by giving Murad access to the world outside his caravan and improving his family’s understanding of disability, we will also improve the understanding of his immediate community. Unfortunately, Murad’s rispiridone dosage was once again increased by local doctors and approved by Murad’s family. It is our intention to revisit Murad in the near future with a neurologist and explain yet again why such high doses are not necessary and are limiting Murad’s function. He will be visiting our physiotherapist in the coming weeks and we are currently in contact with various autism centres in the region in the hope that they can offer additional support and external activities. We also intend to support his family in their understanding and acceptance of their son.
We will not give up on Murad, nor his family. Without the HandSAP programme and the support of our sponsors (USAID) and our Polish partners (Club of Catholic Intelligentsia, and Solidarity Fund PL), we would be unable to reach children like Murad, nor provide them with such consistent and comprehensive care.
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