Dreaming of Rightful Inclusion – Muslims with Disabilities and the Ummah

Brooke Benoit finds that the hurdles facing Muslims with disabilities must be removed one at a time by the people like herself who put them there.

Wheelchair sitting in a meadow.

It’s been great fun for me while living in Casablanca to take advantage of the use of the abundance of mosques all over town. I would often spy a minaret peeking out from between skyscrapers and apartment buildings, and then chase it down for another discovery. It’s an adventure to see the inside of a mosque for the first time: will it be one of the more spectacular mosques or not? Will it have a woman’s area and wudhu facilities? And though I can almost always expect the women’s section to be upstairs – will it be up one, two or even three flights of stairs? No matter how many steps I must climb, nearly every time I enter any mosque in the city, I come across an elderly auntie either slowly making her ascent to the sacred space or resting and recomposing herself just at the top of the threshold. Indeed the mosque is a refuge for many women- young and old- who I find praying, eating or just relaxing on the enormous rugs or fluffy sheep skins.

Attitudes of Muslims toward persons with disabilities are the greatest barrier that Muslims with disabilities encounter at Muslim gatherings and places of worship.

I’ve often wondered about these elderly aunties. Likely they have spent a great portion of their lives in service to their families – to their husbands, their children, their parents and maybe their in-laws and siblings and even more. Finally, they are having their time to rest, reflect and worship abundantly, but first they must make that difficult, possibly painful, and maybe even hazardous climb into the mosque. And then one day it dawned on me: how many more women and men and even children cannot overcome the physical barriers we have set in place in our mosques? And if that’s the way we think- designing and supporting unattainable places of worship – then what about all the  invisible cultural and mental barriers we have set in place that exclude innumerable members of the ummah from various spaces intended for worship and attaining knowledge?

“Islam for everyone and at all times,” is a maxim we regularly hear, but unfortunately the majority of Muslims are not making Islam readily accessible to all Muslims. The Canadian Association of Muslims with Disabilities (CAMD) undertook an extensive survey of Muslims with disabilities in Canada to better understand the ways in which they were being denied access to their deen and health. CAMD found that “within the Muslim community, Muslims with disabilities remain isolated and families caring for people with severe disabilities receive no support by the religious community. Muslims with disabilities are also excluded from learning and engaging in spiritual and social activities.”

The physical barriers faced by Muslims with disabilities in the mosques and other community spaces are fairly obvious: most mosques do not meet the criteria for disability access even in places such as Canada and the US where laws are in place to ensure rights to access. There are also no educational services readily available for Muslims with hearing disabilities and no texts are available for those with vision disabilities. Behind these physical barriers are the individual attitudes, cultural limitations, and excessive ignorance that keep Muslims with disabilities (and Others) from accessing their deen among members of the ummah. CAMD stresses that “attitudes of Muslims toward persons with disabilities are the greatest barrier that Muslims with disabilities encounter at Muslim gatherings and places of worship.”

Among those surveyed by CAMD was a deaf Muslim brother who stated that his only option to learn about Islam was “to be the first one in the mosque and sit right in front of the Imam and struggle to read his lips during the khutba.” And what about the sisters in similar scenarios? Obviously, in the vast majority of mosques, a sister could not simply “sit right in front of the Imam” trying to catch even a glimmer of her deen. Bariah, the writer behind Strandedmom.com, is the mother of a child with an intellectual disability and finds that rigid thinking about issues in the mosque, such as gender-based rules and behaviours expected of children are among the hindrances that keep families from being active in their Muslim communities:

“What makes autism unique is that it does not manifest in any physical form. Often on the outside the child looks perfect and healthy and their behaviour makes no sense to other people.The mercy often extended to those with obvious physical disabilities is not always extended to children with autism and their families. Or they may be regarded as mentally deficient and no one has any expectations from them. I think with increased awareness and education this will change…. many solutions would imply that there are different rules for different people. Many times the caregivers are female and if the intellectually disabled person is a male, it poses a problem when the child goes beyond a certain age. I feel society in general needs to come to terms with the fact that there have to be different rules for different people, and people caring for those with disabilities should also understand not to abuse those rules.”

Many Muslims in Western countries wrongfully expect that Muslims with disabilities have their physical and well-being needs met by government social services. Logically, we must understand that, while non-Muslim service providers can attempt to meet the physical needs of Muslims with disabilities, because the deen is a complete way of life, it is difficult for non-Muslim service providers to anticipate and understand the needs of their Muslim clientele. Consider, for example, if a Muslimah prefers a female transportation provider, but one is not available, does the sister compromise her health and needs or her religious leanings? Not only does CAMD assert, “that mainstream services do not respond adequately to their individual religious needs as Muslims,” but CAMD founder Rabia S. Khedr explains that a crisis is currently unfolding as we are seeing an increase of Muslims with disabilities, yet a stagnation in Muslim service providers. As Muslim parents of children with disabilities age, they have profound concerns about the physical and spiritual well-being of their aging children. Why do we Muslims expect for these members of the ummah to be cared for by non-Muslims?

As Bariah pointed out, “When parents are too old to care for their loved one, they have no choice but to seek refuge in residential care which do not cater to Islamic needs. Many adult males and females reside together and I feel that we, as a community, have to answer for the state of the vulnerable among us.” Among CAMD’s recommendations for creating inclusion for all members of the ummah is development of partnerships with mainstream services as well as that “Muslim youth need to become aware of and encouraged to pursue careers in the social services sector including ASL Interpretation, Deaf-Blind Intervention, Attendant Care and Developmental Services.”

Zenab Shah, founder of the Disabled Muslims Network, is very happy to know that currently her nephew, who has a speech and language delay bordering on autism, is able to attend a madressa  because of having been given a key worker that sits with him throughout the whole session, and has materials appropriate to help him with madressa and understanding. This is a great improvement over her own experience which is still far more common than her nephew’s circumstance: “When I was 8 years old, [the madressa] decided it was too difficult to teach me. So I was basically asked to leave, as my needs were so great that they were not happy to keep me there. Events like these keep disabled Muslim children back, as they are not able to learn to read the Qur’an, or prayers, or religion, in the way that other children would be, as not all parents are able to teach their children at home, as everyone’s situation varies.” Rabia had similar experiences around accessing the deen through the mosque and madressas: “Growing-up, [my developmentally disabled two brothers and I] did not have much access to learning about Islam except through some luck mixed in with madressa programs. My family was overall isolated from the community because of my brothers’ needs. My parents used to take us to the mosque when we were young. My brothers’ made involuntary noises and the sheikh one day commented generally that women who could not manage their kids should remain at home. My mother decided never to go back there.”

Like other Muslims with disabilities, Zenab has found instances of acceptance and inclusion to be just that – isolated and rare instances. While a few Muslim communities have worked towards creating true Islamic inclusion for all Muslims, the ummah as a whole seems to remains ignorant about and unmoved by the needs of its various members.

Just as we are directed to, at a minimum, hate injustice in our heart, then with our tongue and ultimately to fight injustice by our own hands, there are a multitude of ways that each of us can work towards creating inclusive spaces for all Muslims, either within mosques and communities or from sister to sister (and brothers and aunties and uncles). When Allah (SWT) has directed us to remove hindrances in the road, how can we tolerate physical hindrances in our sacred spaces? While insisting that your mosque meet the minimal standards for Muslim with disabilities is a lofty goal, each of us must confront our own attitudes and culture baggage to create spaces that are truly welcoming. When we implement the basic directives of Islam, then we become that ummah that truly welcomes all people at all times. For instance, before judging the parent with an unruly or unusual-acting child, run down a litany of 70 excuses for the child and care provider. But do not accept excuses from your community as to why they exclude rightful members of the ummah.

The CAMD website www.camd.ca is an invaluable resource for learning how we as individuals and communities can “create a global village that includes full access for persons with disabilities.” Please also visit http://www.disabledmuslimsnetwork.com/ and http://www.strandedmom.com/ to learn more about how to live the maxim of making Islam for all people at all times.

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This article originally appeared in the October 2012 issue of SISTERS Magazine (the magazine for fabulous Muslim women). 

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Unschooling – Discovery New Possibilities

Before we moved to Casablanca, I anticipated that I would be a full-time home-educating mom once we got here. This would be the first time in forever that I hadn’t worked some job either at home or out of it, either as my family’s primary income or as a supplemental income. Actually, when we had lived in Casa seven years prior- that was the last time I hadn’t worked, and this time I was determined to “dedicate all my time to my kids.” I imagined that I would do some writing when the creative drive presented itself and maybe do a little tutoring too in order to build up a resume. Thank God it didn’t happen at all like that.

Soon after arriving in Casa I was invited to write for SISTERS Magazine. This was a very exciting surprise for me, but also left me feeling conflicted. Not only was I worried about busying myself and therefore neglecting my kids, I would also be writing about us and well- could I do that in a tactful, non-backbiting and still interesting way? I thought long and hard and prayed istikarah and you see what happened.

I should have known better on several fronts. I’ve expatted before so I know it doesn’t work out as planned. And aside from that, I have read about a kuzillion home-educating, parenting and pedagogy materials in the last decade and I know that nurturing oneself is critical to being a well-rounded parent, yet I was still falling for the Mommy Martyr bit. Again, thank God, I was pulled out of it!

In addition to being my little outlet, writing for SISTERS was an opportunity for me to demonstrate to my kids how to produce. I’m raising up a gang of prolific readers, which although some find it hard to “produce” readers, well my concern is more with producing producers– whether they be writers, artists, inventors- whatever their inclination may be, my concern has been with helping my kids to find that drive, that confidence, that whatever which will encourage them to contribute. I had hoped that by writing for a magazine it would create a sort of blasé base in my kids- if mom can do that, what can I do?

Well, they can do that too. I am pretty ridiculously excited to direct you to the newly launched Discover- The magazine for curious Muslim kids and my eldest son’s writing debut:

Discover is being printed this week, please check the facebook page to find out where you can get it: https://www.facebook.com/DiscoverMagazineKids

Read! And contribute!