'Pathologizing' deafness

May 1, 2016

This article presented a singular perspective from the medical pathology model: that being deaf is a problem that needs to be fixed. This is a paradigm that is now considered outdated.

I was dismayed to see the cover story for the [January 2016 issue of Contemporary Pediatrics]: “Hearing loss and the pediatrician.” The article opened with the statement “Pediatric hearing loss is a very treatable problem,” and proceeded to outline the medical workup and process for infants and children who are deaf or hard of hearing.

This article presented a singular perspective from the medical pathology model: that being deaf is a problem that needs to be fixed. This is a paradigm that is now considered outdated. There was nothing in the article regarding language and cognitive developmental outcomes, nor consideration of the family perspective in raising and making decisions for infants identified as deaf or hard of hearing.

Being deaf in and of itself is not a problem or impairment. Rather, the lack of access to early intact language leading to full cognitive development is what creates the situation the AAP descriptively refers to as a “developmental emergency.” There are a number of ways that children who are deaf or hard of hearing can access language, and sign language is often an opportunity to offer an immediately accessible pathway to early language acquisition. This was not addressed.

Additionally, viewing a child who is deaf or hard of hearing solely through the lens of pathology does not provide an avenue for gaining identity awareness as a deaf or hard-of-hearing person, or for their parents to understand them as such. Regardless of what technology we put in or on a child’s ear, it does not change who he or she is as a person. We do not “treat” their hearing status. When that technology comes off at the end of the day, that child is still a deaf person and has a fundamental need to explore different ways in which to ultimately claim that identity.

Finally, pathologizing being deaf as something to be fixed discounts all the successful individuals who never had their hearing “treated” and are vibrant and contributing members of society.

I collaborate with a number of colleagues who use American Sign Language as their primary language and do not (for a variety of reasons) use amplification technology. They are healthy and well-adjusted people who advocate for their own needs and the needs of others, form meaningful relationships, achieve terminal degrees, contribute in their fields, and participate in society in all the ways we hope that every child in our pediatric practice has a chance to achieve for themselves.

I would strongly encourage my colleagues in the field to broaden their understanding of what it means to be deaf and how to provide the best care for children who are deaf or hard of hearing. This can be achieved through efforts such as meeting adults who are deaf and hard of hearing, connecting with robust parent organizations such as Hands and Voices (www.handsandvoices.org), and becoming familiar with evidence-based literature focusing on outcomes regarding early language access and cognitive development across modalities of communication.1-4

Rachel St John, MD, NCC, NIC-A

Clinical assistant professor, Dept of Otolaryngology, director, Family-Focused Center for Deaf and Hard of Hearing Children, Children’s Health Children’s Medical Center Dallas, Texas, and University of Texas Southwestern Medical Center, Dallas

DR. BASS RESPONDS TO DR ST JOHN

Thank you for your thoughtful response and commentary. I agree that practicing pediatricians should broaden their understanding of what it means to be deaf. It was not my intent or desire to label patients who are deaf or hard of hearing. Rather, I chose a medical pathology paradigm as there is ample evidence that practicing pediatricians are uncomfortable with it, and many do not have access to comprehensive facilities like yours where the hearing impaired can receive medical, psychosocial, and developmental care.

Pat F Bass III, MD, MS, MPH