Malik Gillani co-founded Silk Road Rising—a theater company focused on sharing the life stories of the overlooked and underrepresented people living along the Silk Road in Asia and the Middle East—with his husband, Jamil Khoury, almost 20 years ago.
Two years ago, Gillani suffered a debilitating stroke that left him with aphasia, the loss of ability to express speech. This traumatic event has forced him to spend these last two years diligently working to regain crucial functions through the help of speech therapists as well Khoury and his own unshakable spirit of positivity.
Windy City Times spoke with Gilliani and Khoury.
Windy City Times: With aphasia being in the news with such a big name as Bruce Willis having the disease, it seems that there is a lot of misinformation regarding the forms this disease takes. Can you speak about what the main thing you believe people should know about aphasia?
Malik Gillani: Reading, writing and talking.
Jamil Khoury: It is important to note that there are different types of aphasia.
Most aphasias tend to be a result of a stroke, traumatic brain injury, or an aneurysm. … Depending on how the language center is affected by the stroke, it can manifest in different ways. The form of aphasia Malik has is called Broca's aphasia. [It's a] non-fluent aphasia, so he has all of his comprehension. He understands everything. His cognitive abilities and memories were not impaired. The problem is finding the words.
He also has a condition called apraxia, which is a speech disorder. Apraxia is making the sounds that produce the words. [With] Bruce Willis, everyone is grateful that he has come forward with his story, because so few people know about aphasia; we did not know the word prior to Malik's stroke.
We believe [Willis] has a condition called primary progressive aphasia, which is not stroke-induced. Primary Progressive aphasia is more akin to Alzheimer's or dementia. … His family has not yet confirmed that, so we are just speculating. With primary progressive aphasia, it is a downward trajectory, while Malik's form of aphasia you can work to restore those abilities.
WCT: How has this [condition] influenced the art you make and the way you make it?
JK: Malik has spent a good many years—18 years prior to the stroke—fighting to give people a voice and create space for voices that weren't being heard; now, he is without a voice. He has quite literally lost his voice. He is working to recover language, and to recover his voice. So we see a parallel between the struggles that Silk Road Rising has tried to address—which has to do with people who have been excluded from the American story—and now the challenges that people with aphasia face to be understood.
WCT: The disabled/differently abled community has faced a lot of marginalization, as well as the LGBTQ+ community. Do you think that more involvement and inclusion from both communities would prove a powerful way to bring about change?
JK: I think [there] is an intersectional case to be made. We have always integrated queerness into many of the stories that we tell, and working with queer playwrights to grapple with issues within the community, so neurodiversity is something that affects the LGBTQ community as well.
[There are related issues regarding] visibility, cultural capital, invisibility and a certain marginalization. So much of the face of stroke recovery in this country happens to be straight and white; Malik is a Brown, immigrant, Pakistan, queer Muslim.
MG: Invisible.
JK: And now disabled.
WCT: You've recently partnered with Texas Tech's STAR program. [Note: The STAR Program of Lubbock, Inc. strives to maximize communication abilities and life participation for persons and their families who are affected by aphasia and other communication challenges.] It speaks about music being an influence on recovery. Will you be incorporating music into your productions?
JK: We have created something that is very much in the early development stages, called Aphasia Arts Forum. This is part of our partnership with Texas Tech. There is a pre-existing relationship between the art school and the STAR program. … There is a role that art plays in stimulating and building new neural pathways. If the part of the brain is destroyed, that part is not coming back; the amazing thing about this organ is that the remaining parts can take on this process of building new pathways, [although] that can take years. We talk about rewiring and remolding our brain, and there is truth to that.
We do plan to create art here [Chicago] … and are utilizing the work we are doing with Texas Tech to lead to the creation of a work that audiences will be able to engage with. There is a lot of work being done at different universities looking at how art and the brain work together, how art is an ally to neuro-healing. … This can be applied to cases of childhood autism or Alzheimer's and dementia. People are looking at art as an intervention.
WCT: Before your stroke, you seemed to be involved in the back end of things. Do you have a desire to perform?
MG: Yes, [to be an] actor…
JK: Malik now has a desire to be onstage. The play is called The Art of Aphasia and it will be written over the next few years. Our goal is to produce it in 2026 and for Malik to perform it. So we want to give him the time to learn a lot in our collaboration with the university, and we have set that as a goal.
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For more about Silk Road Rising, visit www.silkroadrising.org/ .
