Last week, a controversy started making waves on social media, sparked by research that was perceived as harmful to deaf children.
We have more information on the situation, involving a conflict of interest and serious research concerns. We also bring you a community reaction that put a spotlight upon the complex needs of deaf children.
In early June, a research article by Ann E. Geers and four co-authors was published in Pediatrics, a journal of the American Academy of Pediatrics, which claimed that sign language may harm cochlear implant outcomes in deaf children. Alongside this article was a commentary authored by Karl White that praised the study. Immediately, at least 30 deaf and hearing scientists released comments rebutting both the study and the commentary.
They called out bias in the study and commentary. For example, in one of the many responses, Confirmation Bias, scientists Donna Jo Napoli, Amber J. Martin, and Tom Humphries recognized an agenda against sign language, explaining that the authors made conclusions first, and then used improper scientific analysis to support their longstanding beliefs against the value of sign language.
Ann Geers and Karl White have longstanding relationships with the Alexander Graham Bell association – an organization known for emphasizing exclusion of sign languages. Both received awards from the association.
Dr. Karl White offered no criticism in his praiseful commentary on the study. He, however, carries an obligation of neutrality, both as a leader of the Early Hearing Detection & Intervention System and director of the National Center for Hearing Assessment and Management (NCHAM). NCHAM receives funding from multiple government sources including the HRSA and CDC, along with the Oberkotter Foundation, who are known promoters of exclusive oralism.
Along with bias, the scientists also expressed strong concerns connected to research methodology, data analysis, and interpretation. Geers’ study compared three groups of cochlear-implanted children and concluded that the deaf children without sign language exposure developed better spoken-language, speech, and reading skills.
We asked Dr. Wyatte Hall, a deaf researcher from the Clinical & Translational Science Institute at the University of Rochester, to discuss several research concerns in Geers’ study.
“The definition of sign language in this study was not only American Sign Language but included signing exact English, simultaneous communication, baby signs, and others. This means artificial visual communication systems were mixed in with ASL, a natural language”
“The study design was correlational, and looks at relationships between variables such as sign language and cochlear implant outcomes. The authors’ conclusions jump to causation and claim that sign language exposure is connected to worse outcomes in speech, spoken language, and reading.”
“Additionally, almost 50% of children from the oral-only group at the early elementary timepoint had below-average spoken language scores. This is very alarming, and the authors of this study expressed no concerns about this.”
From Dr. Hall’s response there are three things we can take away from his critique of the study:
Takeaway 1: ASL is an official language
ASL must be recognized as a natural language entirely separate from artificial visual communication systems in any studies claiming to look at sign language
Takeaway: 2. Misinterpretation without the full picture- that does not consider complex multiple perspectives - is harmful to everyone who wants to see deaf children thrive.
Takeaway: 3. Ongoing lower expectationsand performance of CI users compared to hearing peers is unacceptable and should be a cause for concern.
The Daily Moth broke this story two weeks ago, and there was a poignant reaction from users of cochlear implants coming forth to share their own experiences, emphasizing the value of American Sign Language as an available choice while growing up.
We reached out to Dr. Julia Hecht, a pediatrician. Recently, she started on a request for the retraction of the study from Pediatrics. Here, she explains why, and how this study might impact parents of deaf children.
I am asking the journal to retract the study because I am concerned about the long term impact on the health of deaf children. We already have the experience of a study with unreliable data that has had a lasting negative impact on children’s health. In 1998, a study was published linking the MMR (measles-mumps-rubella) vaccine to autism. The findings were unreliable, but the study was published and advertised. Parents became afraid to allow their children to receive the MMR vaccine and since then, we have seen the vaccine rate decline. As a
consequence, there have been outbreaks of measles. That study was retracted 7 years ago.
But we know that parents are still afraid and the impact of this study persists. I am concerned that his study has the potential to be even worse for deaf children. Because, that study didn’t change physician behavior. We have strict policy guidelines regarding vaccines and those guidelines never changed. However, there are no established policies or guidelines regarding best practices for deaf children or for protecting deaf children’s development. I’m concerned that physicians will read this study, and think that sign language can slow deaf children’s development. Parents will be concerned about sign language due to the propaganda regarding this study. At the same time, pediatricians may think that sign language can harm deaf children’s development and counsel parents to avoid sign language. That’s why I’m concerned and asking for a retraction. Thank you.
For hearing parents, the discovery of their child being deaf can be paralyzing. Clinicians serve a critical role in guiding parents on integrating deaf children with their families and society. So parents come to trust clinicians’ guidance in turning their deaf children into successful members of society.
However, as the community response showed, growing up deaf or hard-of-hearing is not a simple issue. The experience is complex, involving self-worth, self-identity, the ability to access language 100% from birth and, ultimately, the ability to shape one’s own future. Today, we have a scientific community that is starting to recognize this complexity.
One important and historic aspect of this situation is that there are more deaf scientists than ever who immediately understood the implications of misinterpreted data because they too were children once. They emerged as scientists despite the odds, and advocate for honest, balanced scientific inquiry as key to maximizing all children’s healthy development.
This type of flawed research raises an important question: Is it time for research, early interventions, and clinical recommendations centered around deaf children to include the growing number of scientists who were once deaf children themselves?