As a storyteller, I want to share a journey with you today, a journey into the often-unseen corners of research, where good intentions can sometimes create unexpected shadows. This is a story about the blind spots that persist even in well-meaning research, and the ethical responsibility we carry to notice who isn’t at the table. It’s about being a "User-Led Researcher" and the crucial, sometimes uncomfortable, task of "Keeping Your Blind-Spots in Check."  

Years ago, I embarked on one of my first user-led research adventures. As a Deaf researcher delving into the Deaf Community, I experienced a unique position of power. I held information, knowledge, and above all, language, over those I was researching. It was a profound privilege, yet it came with a weighty responsibility.

The commissioner desperately wanted to hear their views, but it begged the question: if these individuals knew no other life, who was I to introduce them to an alternative? I recall a poignant story from the book A Man Without Words, which describes a Deaf man’s journey from a world without language to one where he could converse. While the gift of sign language was immense, it also opened his eyes to the negative aspects of humanity, like disappointment. 

This experience solidified a core principle that has guided all my user-involved work: the delicate balance of power. While I strive to level the playing field, I’m acutely aware that as a lone researcher, this isn’t always practical.  This tension between presence and absence, between who is included and who is overlooked, has been echoing in my mind during my current PhD work. 

During my PhD readings, a growing frustration has taken root. I see established universities and charities, heralded as experts in their user groups, undertaking research that inexplicably excludes crucial elements related to those very groups. It's as if they're operating with significant blind spots, and these oversights inevitably skew their conclusions and recommendations. Funders, trusting these reports, might not know to critically analyse them for these hidden gaps, leaving the very individuals caught in these blind spots unheard.

Ironically, in this instance, I'm referring to those with hearing loss, particularly within the veteran community. Did you know that veterans experience 3.5 times more hearing loss than the civilian population? While I hesitate to name specific studies, because their overall work is valuable, it’s crucial for every 'veteran' department to consciously acknowledge their own potential blind spots. This might mean re-evaluating who is part of their research team to help them shine a light into the blind spots. For example, when researching the black and ethnic minority community within the veteran population, it's probably best to consider researchers who are also veterans from those communities. However, when it comes to health, I would argue that a general experience of health is not enough to illuminate all blind spots.

Consider the proven link between unaided hearing loss and dementia risk, highlighted by a recent article from a Professor of Dementia. Yet, a study on dementia among veterans focused on PTSD, completely omitting hearing loss or crucial support. One major hurdle in dementia assessments is the ability to understand the person, which is severely hampered if hearing loss isn’t addressed. Veterans, if not adequately supported with their hearing loss, and this goes far beyond just handing out hearing aids, encompassing essential skills and social tools, are being left behind, at a heightened risk of dementia.

Another study, focusing on moral injury, actively excluded individuals with hearing loss without any obvious justification. It seems unfathomable, unless the researchers simply were not equipped to make their research accessible. While severe unaided hearing loss might present a genuine challenge, a blanket exclusion appears to be actively reinforcing and marginalising an at-risk group. Rather than the researcher examining their own lack of abilities in adjusting communication, the exclusion is firmly placed on the veteran.

We, as a society, must commit to shining a light into these unexamined corners. For true understanding and meaningful progress, we must ask ourselves: Are we truly listening to every voice, or are we allowing our own blind spots to silence those who need us most?

The first step is simple, yet radical: we must learn to ask, Who isn’t here? and then, have the courage to invite them in.