I recently met Kyle Decarlo who is a TED Global Fellow and managing founder of the Deaf Health Initiative, a 501(c)(3) not-for-profit organization bringing together organizations, policy makers, and world-renowned researchers to address the social and health issues which negatively impact the Deaf community. I was so impressed with his work and had the pleasure of interviewing him in Arusha, Tanzania during the TED Global 2017 conference. Through advocacy, policy changes, and the creation of new technologies, DHI works to forge coalitions and campaigns that improve the public health and wellbeing of the Deaf community. Here is what Decarlo had to say.
1. What is the Deaf Health Initiative, and why did you start it?
The Deaf Health Initiative came about when I was working at Harvard Medical School in 2012 and 2013. The goal was to improve the course of care and communication for deaf patients in Boston. I was tasked with going around to Harvard-affiliated hospitals and identifying ways to improve the hospital experience for deaf and hard of hearing patients. Sign language-users are the third largest patient population according to The Joint Commission. Deaf patients, myself including, experience significant barriers in healthcare that often stem from misguided policies, principles, and misconceptions surrounding hearing loss and cochlear implants/hearing aids. Training in regards to Deaf culture/community is not formally integrated into medical education curriculum, as the majority of medical education training is focused on the treatment and prevention of hearing loss. To help address this, DHI has been traveling to various medical schools across the country to help educate future and current medical professionals on ways in which they can ensure quality care and communication for deaf and hard of hearing patients.
2. What is your goal with your work?
The end goal with the Deaf Health Initiative is to simply improve health outcomes in the Deaf population – to improve the hospital experience for deaf and hard of hearing patients, encourage more deaf/hard of hearing students to pursue a career in STEM, reduce health disparities within the Deaf population, and to consult with healthcare organizations on best policies and practices for sign language users.
3. What do you think is the biggest misconception about the Deaf community?
I think the biggest misconception, particularly within the medical/scientific/research communities, is that access to sound (via hearing aids and cochlear implants) is the answer for a deaf child. This is a flawed mindset that can have unintentional consequences such as language deprivation. Sound is not the end goal. Early language acquisition is. And babies, both hearing and deaf, can acquire language skills through sign language exposure before they can read, write, or speak. Because of this, DHI helps sponsor the LEAD-K campaign- a national legislative movement to promote language acquisition and ensure kindergarten-readiness for Deaf and hard of hearing children. To date, California, Kansas, Hawaii, and Oregon legislators have passed the LEAD-K bill.
4. What do you wish people knew about your work?
Surgical masks are a significant barrier for deaf patients. Deaf patients, especially in the absence of sign language interpreters, often depend on lipreading and facial expressions for effective communication. DHI and our partner have developed the world’s first-ever FDA-approved see-through/transparent surgical mask. The goal of the transparent surgical mask is to improve patient-provider communication. The majority of communication and our ability to connect/interact with those around us is non-verbal and visual---not what you hear, but what you see. This mask is to serve as an accommodation for deaf/hard of hearing patients who request it. It is not intended to replace sign language interpreters.
We’re finding that the benefits of a see-through surgical mask transcend the Deaf population---we are also seeing application in pediatrics, as the see-through mask provides a sense of comfort and connection between children and their parents. Surgeons who work in noisy operating rooms are also finding benefits, as the see-through surgical mask can reduce potential for medical errors that stem from miscommunication. It really is true- when products are designed for those with disabilities, we end up creating products better than what was originally designed for the norm.
5. Talk more about DHI’s growth.
I think part of our growth was through the expansion of DHI’s workshops to other medical schools and healthcare organizations, but was also largely in part of DHI’s attempt to streamline the efforts of several other Deaf-run organizations. I was noticing that many businesses providing services to better the Deaf community, all had similar overarching goals. Streamlining these organizational efforts through collaboration is key to driving social change. DHI recently established a merging relationship with the Association of Medical Professionals with Hearing Losses (AMPHL), an incredible organization made up of over 1,000 members (ranging from board-certified physicians, nurses, PAs, etc.- all with various degrees of hearing loss). AMPHL offers a mentorship program that pairs aspiring deaf/hard of hearing medical students with a mentor who is able to provide guidance and navigate obstacles that could prevent a deaf student from excelling in medical school.
6. How can people support your work?
If you’re interested in learning more about DHI, you can follow us on Facebook at https://www.facebook.com/DeafHealthInitiative/.
If you’re interested in learning more about the new FDA-approved see-through surgical masks, you can contact us at sales@dhiofficial.org
If you’re interested in help supporting or sponsoring the LEAD-K bill in your state, you can contact us at contact@dhiofficial.org