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Communication Through Poetry

Poet, Author, and Disability Activist Ekiwah Adler-Beléndez lives with cerebral palsy, but he has never viewed his condition as a disability. Instead, he chooses to embrace and share his life, stories, and experiences in an effort to remove the stigma that life with a disease is somehow a less fulfilling one. Ekiwah is a Mexican North American poet who travels the world in a wheelchair. Since he published his first book at the age of 12, he has written six poetry books. His work and life have been featured on NBC Dateline television, on stage, and covered in newspapers such as the New York Daily News. Ekiwah’s passion for reading, writing, and celebrating poetry embraces creativity and offers new solutions to complex problems.

According to Ekiwah, “Poetry is my antidote against solitude, a way to embrace my body and my wheelchair, to move past and within limits into nearly unbound imaginative freedom. That's the freedom I seek to share with others. Poetry can save lives. I say it with such certainty because it saved mine.”

We were so grateful when Ekiwah joined us for an amazing interactive hour full of poetry reading, interpretation, and profound introspection.

During our time with Ekiwah, he read four poems: “Sunflower” by Rolf Jacobsen; two self-written poems, “Nudist Poem” and “Love Song to My Motorized Wheelchair;” and lastly, “If I Can Stop One Heart from Breaking” by Emily Dickinson.

Because of his belief, and the belief shared by Poet Robert Bligh, that all poems should be read twice since they get “tastier once you heat them up again,” each poem was read twice, and we were quickly able to understand why.

Ekiwah’s love for poetry and storytelling began as a young child. Due to his poor eyesight, his father often read to him and this loving gesture provided Ekiwah with access to information through poetry. During the times that his father read to him, Ekiwah said, “he felt like he was traveling in the waves of his voice.” Although Ekiwah’s father passed two years ago, he continues to grieve the loss of this “amazing force” in his life. Some of this grief is felt and expressed in the first reading of “Sunflower” ̶ a poem that celebrates life along with the grief that comes with it.

Although Ekiwah originally struggled with the meaning behind this poem, when he mentioned this to his poetry teacher, they asked him to answer the question, “What was the earth in the beginning?” Instead of providing us with his response, Ekiwah asked us our thoughts. Answers ranged from “protons” and “the Big Bang” to lengthier responses, including when Elin said, “I was thinking about the (sunflower) seeds being scattered and asking myself who scattered those seeds. I was thinking about the creator. Some seeds were sown into frozen land and some into fresh loam. That to me symbolizes that we’re all given seeds for our life and for success. It’s up to us to decide whether we accept those seeds and allow them to grow or not. We’re either that frozen land or fertile loam.”

Juan added, “After I read the poem the second time, what came to mind for me was that the world was unsown by the powers of the universe, whatever those may be. Life began with a seed, and no one knows where that came from ̶ and therein lives the beauty and the magic. The imagination is what gives birth to that scene. The imagination that we each have the opportunity to dream up what that creative process is and by doing so we actually give birth or sow our own seeds by using our thoughts and words.”

After encouraging us to write our thoughts down after each reading, Ekiwah responded to Juan by saying, “I just got so much beauty from that. Thinking of the seed of the imagination and how much it opens.”

Moving on from a poem about sowing the seeds of life to one about the freedom of exposing your vulnerabilities and the relief that comes with revealing your true self. “Nudist Poem” talks about “undressing and lifting the veils.” According to Ekiwah, poetry is a striptease in which he tries to undress everything that separates him from this world. Following this reading, Ekiwah encouraged us to talk more about the parallel between being stripped and having ALS.

“ALS in essence strips us of so much that all that remains is our humanity,” said Juan. Adds Elin, “Ultimately, it’s all we’re left with at the end of the journey like this. Whether we’re the patient or caregiver.”

When referring to the part of the poem where scars are referred to as not “omens of death,” but a sign of having lived, Liz added, “ALS is a slow undressing for some of us with the disease. This poem refers to scars and I’m feeling that those scars are also our stories, life and living. As I become more naked and vulnerable, I have to allow others to see me in my nakedness.”

Although Ekiwah does not live with ALS, he has lived his whole life with cerebral palsy. Unlike ALS, cerebral palsy does not progress, but like ALS, it requires not only the support and care of loved ones, but for many a “lifting of the veil” or acceptance of your true self by revealing your vulnerabilities.

Ekiwah shared, “There are all kinds of people who project all kinds of things onto my disability ̶ even people who really love and care for me. It may be images of my body being sickly, the need to improve my body or something related to mobility and logistics. These things are external. People may view a scar as pain but for you it may be a love story attached to it or an adventure.”

The third poem, “Love Song to My Motorized Wheelchair,” spoke to Ekiwah’s long, beautiful and complicated love story with his wheelchair. To Juan, Ekiwah’s connection to his wheelchair resonated. “You write like I think,” he commented.

The final poem was one that was read aloud by everyone ̶ “If I can Stop One Heart from Breaking.” This poem talked about caregiving, volunteering and how we can all be caregivers in one way or another. Like the other poems, this one also resonated with many during our chat   ̶ as fellow volunteers and for many, caregivers.

Although ALS and cerebral palsy are different on so many levels, many of the people living with these conditions do share the same feelings and have similar experiences. We thank Ekiwah for showing us his perspective on disabilities and showing us how he expresses himself and frees himself of his disability ̶ even momentarily ̶ through his poetry.

Learn more about Ekiwah and his amazing works of poetry. Connect with him on Facebook.

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