As the autumn term gets into full swing and children start a new academic journey, expanding their knowledge and skills, how far has the education system progressed to be more inclusive and teach children acceptance of others? As a child, I was an avid reader and loved nothing more than going through as many books as possible, reading about characters from different countries and even planets – yet I never found a single book with a disabled protagonist that I could identify with. Growing up in Mosul, Iraq, I did not meet or see anyone like me with a disability, so failing to find a disabled figure depicted in storybooks was not unusual and convinced me I was alone in my disability, or, as my family used to tell me, that I was “special, with unique abilities”, so I never expected to find people like me, either in fiction or reality.
Things changed when I moved to London at the age of 10 and began reading books in English rather than Arabic. To speed up the process of learning English, I forced myself to plough through twice the number of books I would normally read. As a teenager, I was eager to discover a sense of belonging. I wanted to read about people in similar situations and to know if my innermost thoughts were valid and experienced by others. My eagerness to find books with disabled characters was increased by the fact that in London, I was no longer unique as I met so many people living with disability. It forced me to obsessively ask the question: if disabled people existed widely, why were we not found in literature?
As my search intensified, I finally found the book I had been waiting for my entire life: My Left Foot by the late Christy Brown, who had cerebral palsy. Not only did the book focus on a disabled figure but it was written by a disabled author. While there were segments of the book that I found bleak, Brown allowed me to imagine anything was possible and told me, through his book, that disability would not be a hindrance to my ambition and passion.
Yet there are still only a handful of books featuring characters with some sort of disability, mostly written in English and often by able-bodied authors. The portrayal of the disabled character is often through the prism of the able-bodied. A prime example is Jojo Moyes' Me Before You, a fictional romance between a character in a wheelchair and his carer; the former chooses to commit suicide rather than live with his disability. Then there is Arabic literature, which has sadly ignored the existence of disabled people, despite the fact there are more than one billion disabled people worldwide, equivalent to 15 per cent of the global population. Globally, literature is failing both disabled children and adults.
This frustrating fact inspired two female Arab writers to take the initiative to make the Arabic literary world a more inclusive one. Lina Abu Samha, a Jordanian writer, is the founder of Miryana's World, named after her six-year-old daughter, who was born with cerebral palsy. Abu Samha failed to find any Arabic books to read to her daughter to reflect her own experience. When she eventually found a series of stories by a Jordanian writer about children with disabilities, she was shocked by the way the book described those conditions. She decided to publish her own children's book instead. Called Let's Fly Home, it is based on three siblings and tells the story of two brothers who support and help their disabled sister. For Lina, this is not just reality but a tool for schools and other institutions to talk about dealing with disability.
In a similar fashion, Shahd Al Shammari, a writer and assistant professor of English literature at Gulf University for Science and Technology in Kuwait, was diagnosed with multiple sclerosis (MS), a disease of the central nervous system that affects the ability to walk and talk.
Like Abu Damha, Al Shammari could not find role models for disabled Arab women in literature, so she set out to write a book that helped tell her story. She felt a need to correct this gap in literature but she also wanted to see more raw stories about those struggling to fit into societies geared towards the able-bodied. Notes on the Flesh is a collection of short stories unravelling the complexities of identity, love and disability in the Middle East. The protagonist is a woman who discovers she has MS and the book focuses on her journey of discovering this new condition and struggling to accept it. As Al Shammari puts it, she was "tired of carrying stories within my body".
The book was the first of its kind and universally well-received, leading to her appearance at the Festival of Literature in Dubai last year. Representation is important. Other organisations, events and institutions must play a part in helping provide a platform for such voices. We need to talk about issues involving disability in the same way we discuss the rights of women and minorities. Books like Al Shammari’s at least start the conversation.
Disability and long-term illness remain taboo subjects. We need more stories that place the protagonist living with such conditions at the heart of narratives, not existing on the margins.
Raya Al Jadir is a freelance journalist and co-founder of the first Arabic lifestyle e-magazine of its kind, Disability Horizons Arabic