I have always been fascinated with the Maasai: beautiful, tall, semi-nomadic people of Kenya and Tanzania. So in 2015, when the opportunity came for me to visit Kenya and Rwanda with my colleague Gloria Weddington, I was ready to go. What I wasn’t expecting was how the experience showed me (dis)ability through a different cultural lens.
We landed in Nairobi, Kenya, and spent a couple of days there. Then we were off on a two-hour bus ride to Rarok in eastern Kenya’s Rift Valley. Surrounded by beautiful hills, cliffs and mountains, this is the home of the Maasai. After an hour’s drive by Jeep, we arrived at Maji Moto Maasai, where we would spend four days in a small Maasai village.
We were greeted by Patrick, a Maasai who hosted us, and Esiankiki, our English-speaking cook. Occasionally, goats and cattle roamed through the village, and monkeys played atop our mud huts. Children and their mothers ran through our compound on their way to get water from a spring and bathe in the warm stream nearby. Thankfully, we had an outdoor bathroom enclosure that included a toilet and shower a few feet from our huts.
I was in Kenya’s Rift Valley and standing before me was a child with Down syndrome. She reached for my hand, and I took hers.
Inside the women’s village
We learned that it is customary for widowed or never-married Maasai women to live in their own separate compound with their children. This is called the women’s village. Esiankiki lived in the women’s compound with nine other women and their children, so one day she took us there to see the beading Maasai women are famous for making.
Cut trees were laid around the compound perimeter, where the Maasai men slept outside at night to ensure the women’s safety. Esiankiki interpreted for us as we talked with the women about their jewelry and purchased some of it. As we were leaving, some children who’d been playing in a field ran up to us. One of them, who clearly had Down syndrome, identified herself as Nasirian, which means “the peaceful one.”
I was in Kenya’s Rift Valley and standing before me was a child with Down syndrome. She reached for my hand, and I took hers. I asked Esiankiki if I could speak with Nasirian’s mother, who invited me into her hut. Nasirian and Esiankiki came with me.
The hut was no more than eight-feet square and windowless. There was only a small fireplace for cooking and pallets on the floor for beds. I asked if Nasirian had siblings. Yes, she was the next-to-youngest of four children. I asked Nasirian’s age. Her mother was not sure. Esiankiki explained the Maasai do not celebrate birthdays, but her mother thought Nasirian was 10 years old. She was the same height as her 6-year-old brother. I asked her mother if Nasirian was able to run and play like the other children. She said she often tired quickly during play, and she would come sit beside her and the other women to catch her breath.
Could that have been due to the heart condition that often accompanies Down syndrome or perhaps poor muscle tone—or both? How did Nasirian’s development compare with that of her older siblings? What about her speech and language? It wasn’t easy getting Esiankiki to explain babbling to Nasirian’s mother, but she was able to tell me that Nasirian had babbled, but didn’t say her first word until she was about 36 months old. She said, “Nasirian still does not talk like the other children.” She noted that Nasirian could say only a few words, and she often used gestures to communicate her needs. I asked Esiankiki to have Nasirian tell me her favorite story. Her mother said she could not tell a story. She didn’t have the words.
Could she sing a song? Her song consisted of three words that she sang repeatedly. Esiankiki said the tune was correct, but the words were out of order. As she sang, Nasirian’s voice was slightly hypernasal and hoarse. I asked if a doctor had ever examined Nasirian. Esiankiki said a nurse visited the compound periodically but would not have examined Nasirian unless her mother requested it.
I ended my visit with Nasirian by asking what her mother’s thoughts were about her daughter’s future. Esiankiki said “future” was a difficult concept to express in Maa, the Maasai language. When she finally understood what Esiankiki was asking, Nasirian’s mother said, “She will be with me. If she is with me, she is happy.” I had all the information I needed.
I was gratified that using an interpreter and my ethnographic interviewing skills allowed me to learn about Nasirian. In what we might in our own culture consider a low-resourced, unsophisticated environment, she had a happy life. Her mother’s time, emotions and energy were not devoted to finding resources and acceptance for her daughter. Nasirian was considered and treated as one of the many children of that village. She was just like everyone else.
That ended my Maasai diagnostic adventure, but opened my eyes to how other cultures relate to, value and live with people with a disability.
About the article’s author: Elise Davis-McFarland, PhD, CCC-SLP, is president of ASHA. She is the former vice president for student affairs at Trident College and developer of the interdisciplinary graduate Communication Sciences and Disorders Program at the Medical University of South Carolina. She is also past chair of ASHA’s Committee on Honors and past coordinator of ASHA Special Interest Group 14, Cultural and Linguistic Diversity, among other ASHA posts.