Shahd Alshammari is the author of the recently published book Head Above Water: Reflections on Illness (Neem Tree Press). Born in Kuwait to a Palestinian mother and a Kuwaiti father, Alshammari, who was diagnosed with multiple sclerosis at the age of eighteen, went on to earn a Ph.D. in English Literature from the University of Kent (United Kingdom). Today, she is an assistant professor of literature at Gulf University for Science and Technology (Kuwait). Alshammari specializes in illness narratives and Disability Studies, and has also served as a judge for various literary prizes in the Gulf region and beyond. Her work, some of which can be found on her website, www.shahdalshammari.com, has appeared in Life Writing, Journal of Literary and Cultural Disability Studies, Journal of Middle East Women’s Studies, and other publications. In an interview conducted via email in September, she tells Diwan about her views on disabilities and the rights of the disabled, particularly in the Middle East.

Rayyan Al-Shawaf: In Head Above Water, you recount your experiences living with multiple sclerosis in your native Kuwait as well as in the United Kingdom, where you attended university. When it comes to the challenges you faced—and, in the case of Kuwait, continue to face—what were the biggest differences between the two countries?

Shahd Alshammari: Actually, I couldn’t see much difference in how people respond to disability. This is particularly true of the social stigma attached to young disabled people using accessible parking lots, bathrooms, and bus seating. Whether in Kuwait or the U.K., there are those who react disapprovingly when they see a non-wheelchair-user sit down on public transport below a sign that reads “reserved for elderly or disabled.” Such people assume disability is only visible and physical, ignoring the possibility of invisible disability and pain.

I will say that in Kuwait, there are accessible buildings and elevators everywhere, which I didn’t find to be the case in the U.K. Of course, this is only my experience, and I don’t want to speak on behalf of others. Also, in the U.K., I heard lots of name-calling on public transportation, much of it directed at blind people. Even when there wasn’t name-calling, there would be those who’d make faces at blind people struggling with their guide dogs, since they couldn’t see them. It was sad and unsettling for me to watch.

That said, in Kuwait, I had never seen guide dogs. I think they make a huge difference and really benefit the blind.

I might also mention that British universities are more accommodating in terms of meeting disability and learning needs. Kuwait’s educational system is on its way to more inclusivity, but there is still a stigma attached to requests by disabled students or their parents that their specific needs be accommodated.

RA: You’ve written articles about the (often negative) portrayal of people with disabilities, both physical and mental, in Kuwaiti television shows and stage plays. What are some of the stereotypes associated with specific disabilities?

SA: Kuwait has a beautiful history of TV and theater, but sadly disability is almost always pictured as tragic, pathetic, or humiliating. Many writers portray disabled women—specifically—as “fallen,” punished, and undesirable. Almost always the narrative is “disabled woman struggles to be loved.” Sadness, melancholy, and loss are the themes attached to disability on TV. Additionally, we find shows since the 1970s and 1980s depicting villains as disabled, scarred, and deformed. Unfortunately, this is not peculiar to Kuwaiti television and theater—we see it in Disney’s depictions too. Only recently has there been some resistance in Western media.

In Kuwait, theater still mocks people with disabilities, who are made a spectacle for viewers. Dwarfism especially has long served as a source of humor and jokes. This hasn’t been addressed anywhere critically. It is my hope that I can continue to shed light on these negative depictions and help bring about an end to them.

RA: Given that disabilities vary widely, does lumping them all into one category, as many of us tend to do, lead to confusion as to who is able or unable to perform certain tasks?

SA: Well, if you do that, it’s ableist [discriminatory in favor of the able-bodied—editor’s note] in many ways. You can’t lump all races together, so why do that with disabilities? I think that we need to hear from disabled people themselves as to what they can or cannot do. Medical professionals tend to speak on behalf of disabled people, and oftentimes perpetuate stereotypical analyses. And, as I mentioned, we still struggle to understand invisible disabilities; I’ve seen ableist individuals continue to assume that people who live with invisible disability are exaggerating or even lying. There’s so much internalized ableism that most people aren’t aware it even exists.

RA: How, then, should we subdivide disabilities?

SA: We can use the United Nation’s divisions of disabilities. In the UN Convention of the Rights of Persons with Disabilities, “disabled people” are defined as “people who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”

To add to that, I believe we need to actually listen to what people say about their own bodies and impairments. What is defined as an impairment may not lead to a disability. The latter may arise because of society—as when sign language is not taught and reading material is not available in Braille. Disability is a complex category of lived experiences, and, like race and gender, we need to continually interrogate it.

RA: Is it useful for country-specific organizations that campaign for the rights of the disabled to forge partnerships with each other and ultimately build transnational networks?

SA: It would be a wonderful initiative. I would like to see such partnerships, especially between organizations operating in Gulf Cooperation Council member states. Several are moving toward a more inclusive era for disabled people.

I see that the United Arab Emirates, for example, has adopted a new approach to facilitate equal opportunities, and therefore better lives, for people with disabilities. The government provides access to specialized education and champions inclusion in mainstream schools, in addition to offering job opportunities and housing.

We can learn from each other’s challenges and failures, and forge better connections through transnational dialogue.

RA: What specific measures should Kuwait take to accommodate the disabled?

SA: It all starts with inclusive education and governmental support to change the laws and then implement them effectively. In this regard, it is a shame that no candidate running for parliament in September raised the issue of disabled people’s welfare.

The Public Authority for Disability, a governmental institution that oversees the integration of people with disabilities into society, should take it upon itself to ensure that teachers and healthcare professionals are well-versed in the rights of people with disabilities. For example, Kuwait needs inclusive education. Some students with specific physical impairments are allowed in mainstream educational settings, but that is not enough. And there are some “special schools,” but they usually leave out many students with psychosocial and learning disabilities. We need schools that are not segregated at all. Also, legal documents are inaccessible to the blind. As such, we need Braille and Easy Read. Moreover, sign language should be taught in schools and used in public settings.

Another important issue is lack of access to social security funds. Many disability benefits are not given to persons with disabilities themselves but allocated to caregivers, which has resulted in the misuse of funds in certain cases, and also led to persons with disabilities being discouraged from seeking education and employment opportunities.

So we have a long way to go...