Disability and Islam: PhD examines unconscious exclusion, burden of responsibility

Shaheed Moussa* attended Friday congregational prayers regularly at his local mosque – until he became a wheelchair user. But after a series of incidents left him feeling dehumanised and invisible, he stopped participating in the afternoon congregational prayer. As a Muslim, praying is an obligatory part of daily life, Fridays considered sacred days for worship. And Shaheed wanted to fulfil this obligation as part of the Muslim community, the Ummah.

First it was the unnavigable, crumbling ramp into the building. Even after he’d approached the trustees for help, it was repaired only after a senior trustee underwent a hip replacement. But even inside, Shaheed’s path was blocked: first by scattered shoes in the ablution area and then by a request not to enter the prayer room. His wheels were considered unclean.

Shaheed’s story is one of several case studies included in University of Cape Town (UCT) PhD graduand Nafisa Mayat’s doctoral research on disability inclusion and Islam. Nafisa will graduate on 30 March through the Department of Health and Rehabilitation Sciences in the Faculty of Health Sciences.

Nafisa is one of many inspirational UCT graduands who have opted for the road less travelled in their research. There is very little scholarly work on disability and how it’s enacted in the broad Muslim community, or Ummah, she said.

Religion absent

“Religion and spirituality are key to the way many people, including those with disabilities, make sense of the world and their place in that world,” Nafisa wrote in her thesis abstract. “However, in most scholarship focusing on disability, religion, as a way of understanding and dealing with disability, is side-lined or absent.”

Even with her background in social work and psychology, Nafisa said she hadn’t really understood disability. It hadn’t been taught or enmeshed in university curricula. That changed when she enrolled for the Postgraduate Diploma in Disabily Studies at UCT. She immersed herself in the field, working in KwaZulu-Natal and then within UCT’s Disability Service unit. She is currently a lecturer within the Division of Disability Studies at UCT.

“There was a huge gap in the Muslim community around understanding disability.”

Her passion for disability advocacy and activism didn’t go unnoticed. But it was the late former director of UCT’s Disability Service, Reinette Popplestone, who suggested Nafisa pursue the topic as a PhD.

“There was a huge gap in the Muslim community around understanding disability, and broadly within other faith-based organisations too,” she said. And even within critical disability studies, religion and spirituality are not part of the mainstream discourse and narrative.”

Nafisa had also been shaken by the general levels of ignorance about disability, even among family and friends. There was a growing awareness that she was being called to change that. In Shaheed’s case, Nafisa said he was very aware that his wheelchair had to be clean when entering the mosque. He carried a towel in his backpack to wipe the wheels before entering the prayer room.

“But no one took the time to ask him that. And their lack of knowledge and understanding could have caused a rift.

“I got onto my prayer mat and asked God for guidance. If I didn’t work to change the understanding and perception of disability in my community, I would be as guilty of perpetuating these misconceptions,” she said.

“And once I was in it, there was no turning back.”

Translating disability

Nafisa’s study sites were Cape Town, Durban and Johannesburg. In each centre she interviewed a Muslim person with disabilities, their intimate partner, a family member, a priest, and a non-disabled person to get a broad idea of how disability inclusion is enacted in the different spaces – and how they saw disability inclusion within the Ummah.

Although hers wasn’t a theological study, Nafisa studied and referred to Qu’ranic verses and teachings around disability.

“The main thing that emerged is that there is no such thing as discrimination in the Qu’ran.”

“The main thing that emerged is that there is no such thing as discrimination in the Qu’ran, no Arabic word that translates disability, nor in the Hadith, the sayings of the Prophet (peace be upon him). It talks about impairments such as blindness and deafness, but in the context of seeing and hearing Islam’s message,” she said.

“But what we have done in our interaction and engagement is taken disability and associated our ableist understanding of disability and that has been translated into the exclusion that occurs … Yet all of us, whether we have a disability or not, are expected to perform certain prescribed obligations, like prayers, fasting and like going on Hajj [an annual pilgrimage to Mecca], and realising the five pillars of Islam.”

When she interviewed the priests, they were aware they weren’t doing enough to recognise disability but were very open to change, said Nafisa.

“That was positive. In the Qu’ran there is no discrimination around disability and that needs to be highlighted. The full journey of inclusion means that more needs to be done on their part.

“It got them thinking about how this shift needs to happen, to get people to understand how exclusion happens; how we are not an inclusive community for those with disabilities – and why it’s our responsibility to make that change.”

Unconscious exclusion

What emerges is “unconscious exclusion”, a description Nafisa uses for most of the interaction.

“It’s something that’s always been there. People are aware of it but need to take responsibility as silence sustains the continuation. There must be a conscious or collective move towards inclusion.”

Nafisa’s study identifies how this plays out in the lives of those with disabilities.

“The dominant discourse around disability is one that reflects an ableist, normative, colonial narrative. This narrative influences how disability inclusion is enacted within the Ummah, belabouring a move to full inclusion.”

Nafisa proposes that thinking must be reshaped by new knowledge and by challenging the dominance of the normative, ableist narrative to move the decolonisation project forward.

Power dynamics

Nafisa found the study challenging.

“As a human being and as a Muslim I experienced many uncomfortable moments in dealing with the exclusion that’s been happening.”

Some of the participants’ experiences were deep and their sense of rejection profound. In Shaheed’s case the ramp that was created for the older trustee reflected an existing power dynamic he was unable to change.

“His takeout was ‘I’m not worth anything’ and the humiliation, the belittling, was deep,” said Nafisa.

The study required personal reflection.

“I always had to take a step back and question myself and my role and how I may have contributed. One thing that got to me is how much effort is needed from the person with the disability to feel included. The burden is on them.”

“So, people with disabilities are on the periphery, and need to be brought into the centre.”

One of the study participants spoke of mind-mapping before going to mosque. She prepared beforehand for what she might encounter, Nafisa said. And she would get there early and plan how she would exit the building safely within the mass of peole at the end.

It’s not only about negotiating a ramp into the mosque, said Nafisa.

“For example, if a person with a disability wanted to be at the front of the mosque to really connect with their creator, they can’t go to the front because it’s not fully accessible. So, people with disabilities are on the periphery, and need to be brought into the centre.”

From research to advocacy

Nafisa has embraced advocacy as part of her own responsibility as a Muslim and a scholar.

“The hard work now will be to create this awareness and reshape disability thinking.”

Beyond the academic space and Disability Service at UCT, the interventions and message of inclusivity and awareness need to penetrate Muslim theological bodies and Muslim and other mainstream media.

“And this is where I need to start being visible. I am prepared for whatever I face; the welcoming of this knowledge creation, of moving forward. But it’s critical to hear the voices of those with disabilities. Whatever I do now, people with disabilities must be part of that process. It’s important for me to get their stories out there.”

The future

As a scholar Nafisa hopes to continue her work in a postdoctoral study to develop the field and discourse around religion and/or spirituality and disability.

She envisions this as a cross-faith study to provide a theoretical framework to dismantle barriers for people with disabilities.

Her graduation celebrations started early. Nafisa was with family in Durban when she received news that her PhD had been passed. She is planning to have a small celebration with colleagues and friends who have been so supportive of her PhD journey.

“You can’t do this alone,” she said.

*Name changed for ethical reasons.