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Latinx Parents Speak Out About Raising a Disabled Child in Kalamazooo
from Ed.503
Contributions and Challenges of the Latinx Community in Kalamazoo
By Juan Martín Vélez
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Editor's note: This story is part of the New/Nueva Opinion's series Contributions and Challenges of Latinx Community in Kalamazoo series. The Kalamazoo Community Foundation founds this series.
Abigail is diagnosed with autism and rheumatoid arthritis, which means she often faces unique challenges in her daily life
Photo: Juan Grillo - New/ Nueva Opinión
Kalamazoo, MI - At first glance, Ramona’s daughter, Abigail, is a “normal” girl. She is quiet and reserved, but you might not notice there’s something unusual about her. Below the surface, she has a couple of conditions that have made her life anything but ordinary. Abigail is diagnosed with autism and rheumatoid arthritis, meaning she often faces unique challenges in her daily life. She is not alone. Abigail is one of over 33,000 residents of Kalamazoo County and over 12,000 adolescent Hispanic & Latinx residents of Michigan to have a disability. Like her fellow disabled Michiganders, her struggles are often radically different from what the rest of the population faces.
For Ramona, taking care of Abigail isn’t always an easy task. “She was very reserved. She couldn’t keep up with conversation and had difficulty opening the door,” she tells us. “I always try to help her as a mother, but I’m no expert.” However, with the help of organizations like the Kalamazoo Regional Education Service Agency (KRESA) and Integrated Services of Kalamazoo (ISK), Abigail has managed to come out of her shell. Thanks to services like KRESA’s Woods Edge Learning Center, she can be more independent and has even started holding more conversations. Even if she isn’t fully able to live on her own, the services she’s received have aided her in becoming more able to take care of herself and thrive in the outside world. Abigail isn’t the only Latinx child who’s been helped by KRESA’s services.
Sara and Rodrigo arrived in Kalamazoo from Durango, Mexico, and discovered that their daughter had not fully adapted to the new environment in the United States.
Photo: Juan Vélez
When husband and wife Sara and Rodrigo came to Kalamazoo from Durango, Mexico, they found their daughter hadn’t entirely adjusted to the new environment of the United States. “The change affected her,” they explained. “It affected her speech.” KRESA’s program has helped her improve necessary language skills, and while she still struggles significantly with expressing herself through speech, she’s improved considerably over the past two months. I In particular, Angela Gross, who works as an interpreter at KRESA, has helped them overcome language barriers. “[She] translated what the therapist works on with her for us. So, it’s easier for us to know and understand what’s going on that way,” Sara tells us.
Note: the following paragraph contains names that have been altered for privacy reasons.
A third family, led by hardworking mother Liliana, details her experience raising their high-school-aged son, Carlos. Carlos has significant difficulties with speech and reading comprehension and, as a result, has been placed in the special education program at Loy Norrix High School. Liliana and Carlos’ sister, Daniela, do their best to help him and ensure he receives the necessary services. Beyond his special education enrollment, Carlos also participates in supplemental educational programs run by El Concilio and Sylvan Learning. As Daniela puts it, “School aid is very generalized.” The specialized services available through El Concilio mean that Carlos can often get personalized care, something both Liliana and Daniela greatly appreciate. “They help him do his homework and read. He gets to do a lot of practical activities there,” Liliana explains.
There’s often a powerful stigma around reporting and exhibiting disability, especially in close-knit communities.
The Latinx community is no exception. In many cases, physical and mental health issues remain “family matters,” with care primarily entrusted to immediate and extended family members rather than the health system. As a result, it can be challenging to openly discuss these sorts of conditions with others outside or even inside the community. Fortunately, none of the families profiled reported any significant discrimination against their children. “The people around us love and respect [Abigail] greatly,” Ramona explains. “It’s all been very calm,” Sara concurs. Likewise, Liliana and Daniela, from their perspective, haven’t noticed too much discrimination against Carlos. Though many people don’t notice his disabilities, they usually don’t treat him differently. As Daniela explains, “They help him.”
It hasn’t been entirely smooth sailing for any of the families interviewed. In each interview, a recurring theme was the language barrier between the primarily Spanish-speaking parents and the primarily English-speaking providers. “Because there’s this language barrier, people don’t have access to the help they need,” Daniela says. Carlos, who is bilingual but often struggles to word things in one language or another, faces challenges from the language barrier, highlighting the importance of bilingual services readily available in the region. Ramona has also found herself facing issues with the language barrier; in many cases, the social workers from ISK only speak English, something she rarely uses. “At the previous organizations we used, there was always someone who spoke the language we used in my home. It made me feel much better represented by my own language.”
Liliana, a hard-working mother and head of household, details her experience raising her school-age son, Carlos.
Photo: Juan Grillo - New/Nueva Opinión
Ultimately, the families we interviewed all seem happy with much of the care they’ve received. When asked what could be improved, they emphasize bilingualism, but also just on services being more tailored towards the individuals who use them. “What may work for [one person] may not work for [Carlos],” says Daniela. “[All the kids] are very different.”
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Juan Martín Vélez studies Cultural Studies, U3, at McGill University, Montreal, Québec, Canada and is a resident of Kalamazoo County.
