Nilufar’s Story

You are about to read an uncomfortable story. The story may seem like one of blame and negligence, but it’s bigger than that. It’s one of life and death. Heads up… it most likely ends in death.

When people outside of the Deaf and Hard of Hearing community are tasked to think about the biggest obstacle we face, it almost always centers on our ears and hearing ability or lack thereof. The following story outlines who and what really stands in our way and how we must work together to remove the barriers holding us back.

The smell of bleach was overpowering in the small windowless hospital room. Nilufar’s jaundiced eyes watered at the smell and her stomach started to turn as she felt a wave of nausea approach. The nausea wasn’t just because of the strong chemicals, Nilufar was experiencing acute liver failure and the symptoms were getting worse. As she waited for the doctor to enter, she hoped she would be granted a second liver transplant as the first transplanted liver was failing.

The chance of being granted a second liver was slim. It appeared that Nilufar was not a qualified candidate as she had trouble understanding the necessary steps to ensure she was on top of managing her care. The medical team was hesitant to believe that Nilufar would take care of a new liver because she made missteps in her past treatment.

Nilufar began to panic and brought her concerns to Valerie, a case worker at Deaf Action Center. Valerie immediately began to wonder who was really at fault for Nilufar’s first liver failing. As a Deaf person herself, Valerie understood that communication, especially in high-risk medical setting, is highly nuanced and requires immense care and expertise by those responsible for facilitating information about procedures and treatments.

Did the hospital system provide Nilufar with a highly qualified interpreter during her first transplant or did they opt for a cheaper, low-quality interpreter with very little experience? Did they use a video device that displays an interpreter on a screen, which isn’t effective for those with limited vision and English proficiency?

As it turns out, the hospital used a novice interpreter with minimal experience who didn’t have the self-awareness to recognize that they were in a situation in which they were not qualified. Rather, they eagerly accepted the work based on their personal objective: to help Deaf people. During the first transplant, Nilufar relied heavily on her mother, who did not know American Sign Language, and often spoke on her behalf rather than explaining the concepts to Nilufar and consulting with her. It’s no surprise why Nilufar had difficulty understanding what was required of her to keep her liver healthy. However, her liver was now impacted and failing. She needed a second transplant.

While Valerie and the DAC team fought for quality interpreters during her last appointments, allowing, Nilufar to FINALLY understand what was needed for her to properly care for her body, it was too late. Nilufar was deemed non-compliant and denied a second transplant.

This isn’t the end of Nilufar’s story. DAC is still advocating to educate Nilufar’s transplant team and urging them to give her a second chance by starting the process over with highly qualified interpreters. Nilufar needs to become a participant in her health choices; DAC believes she will be able to effectively do that once she is empowered with qualified interpreters and clearly understands what needs to take place. No one should be denied another chance at life and must toil because someone else’s good deed ended in disaster.

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