Hub or Network for Deaf & hard-of-hearing scientists? An outsider’s perspective

News Article by Sarah Latchney, Ph.D.

Embracing diversity in biomedical research by means of increasing the number of individuals from underrepresented groups (URGs) has become paramount for research institutions across the country. At the University of Rochester Medical Center (URMC), efforts to cultivate diversity has been ongoing for decades, with programs such as the Post-baccalaureate Research Education Program (PREP) and the Summer Undergraduate Research Fellowship (SURF). However, even with current diversity-embracing programs, the percentage of scientists with disabilities at academic institutions is substantially lower, with Deaf and hard-of-hearing (D/HH) scientists being one such group that has lagged behind compared to some other URGs. To address this disparity, URMC has partnered with Rochester Institute of Technology (RIT) to address the dearth of D/HH scientists at academic institutions. The inter-institutional collaboration has resulted in an umbrella of research training programs for early-stage D/HH scientists, supporting trainees at the baccalaureate, post-baccalaureate, doctoral, and post-doctoral level.

An institutional hub or distributed network?

As explained in an article published in Science Letters, written by Stephen Dewhurst, Ph.D., vice dean for research at URMC, the goal of the D/HH training programs is to create a Diversity Hub of Innovation in Rochester for D/HH scientists. The intent is to provide the means and resources necessary to meet the specific needs of D/HH scientists. The hub strives to provide career training, to identify mentors and role models, to advance technology development, to provide communication-accessible networking and university sponsored events, and to train sign language interpreters in biomedical disciplines. It is also hoped that by directly connecting D/HH scientists with each other via an institutional hub, it will reduce the isolation and communication barriers many D/HH professionals experience.

In response to the institutional hub concept, a follow-up article also published in Science Letters, vouched support for an alternative model, designated as a distributed network model. In this model, the D/HH scientific community is neither confined to a particular geographic location nor exclusively for early-stage D/HH trainees. Instead, the distributed network incorporates D/HH and hearing scientists at all levels of biomedical research across the country.

Although vastly different, the goal of both training models is to meet the unique needs of D/HH scientists, and – through their own approaches – both have demonstrated success in recent years. In acknowledging the strengths and challenges of the two training models, continuing the dialogue may provide fresh ideas and perspectives for URMC and RIT to incorporate into its current training programs to yield even greater success for their D/HH trainees.

Continuing the dialogue: An outsider’s perspective

Hui-Yi Chu, Ph.D., a scientist at Fate Therapeutics, contacted Dr. Dewhurst to offer her personal perspectives. Dr. Chu was born and raised in Taiwan and is hard-of-hearing. Instead of sign language, she communicates by speaking and with the assistance of hearing aids. She received her Bachelor’s and Master’s degrees in Taiwan, specializing in mouse genetics. She moved to the United States in 2005 and obtained her Ph.D. in molecular, cellular, and developmental biology at the Ohio State University (OSU). She went on to do a postdoctoral fellowship at the Scripps Research Institute in California and is currently a molecular and cell engineer at Fate Therapeutics.

Dr. Chu’s journey to become a successful research scientist is a familiar one for many D/HH professionals. Like many others, she did not know other D/HH scientists and faced communication barriers and unaccommodating educational and research environments. Growing up in Taiwan, there were no accommodations for D/HH students, which proved to be a monumental obstacle to overcome in her pursuit to become a research scientist. She struggled to follow her teachers and professors. She had difficulty taking notes. She lacked confidence to ask questions. She was denied accommodations for the hearing portion of the TOEFL test, a requirement for non-U.S. residents to gain entry into graduate programs in the U.S. These challenges collectively delayed her opportunity to pursue a research career in the U.S.

Her big break came with the help of a well-connected mentor, Chun-Ming Chen, Ph.D., at National Yang-Ming University where she received her Master’s degree. Dr. Chen introduced Dr. Chu to Akihira Ohtoshi, M.D., Ph.D., at the Nationwide Children’s Hospital Research Institute in Columbus, Ohio, who offered her a research assistant position. Soon after joining Dr. Ohtoshi’s lab in 2005, Dr. Chu re-applied for graduate school and was successfully admitted to the Molecular, Cellular, and Developmental Biology program at the OSU.

However, even in the U.S. and on track to receive a Ph.D., Dr. Chu was the only D/HH scientist in her graduate program and experienced the same isolation and struggles as she did back in Taiwan. A mentor that Dr. Chu closely associated with while working in the Children’s Hospital, Heithem El-Hodiri, Ph.D., encouraged her to speak to student services at the OSU regarding accommodations. Through student services, Dr. Chu received real-time captioning for classes, seminars, and conferences, but not for informal – but crucial – gatherings such as lab meetings and conversations among lab mates. As a result, Dr. Chu was able to receive and process information during her classes and seminars but missed out on many brainstorming moments that make up the informal research curriculum. This crucial loss of information and dialogue and lack of active participation limited the development of her analytical, interpretative, and innovative thinking skills. It also undermined her self-confidence and assertiveness to ask questions. To make up for this deficiency, she wrote down and repeated key words and key points. But despite her extra efforts, Dr. Chu missed out on many formal and informal scientific discussions that her hearing peers had access to. The disparity in communication access was also true during her time as a postdoctoral fellow at the Scripps Research Institute, demonstrating that the isolation and barriers that D/HH scientists face is not confined to a single institution, and, instead is widespread across the country. Dr. Chu’s experiences made her realize that even at top-tier research institutions, the awareness and understanding of appropriate accommodations for scientists with disabilities requires more attention.

Several factors helped Dr. Chu overcome the less than adequate accommodations she received throughout her research career, many of which are in line with the goals of Rochester’s current training programs. Of most importance, developing and maintaining relationships with mentors that recognized and followed through with Dr. Chu’s communication needs were the most influential. She credits her graduate mentor at the OSU, Anita Hopper, Ph.D., for her extraordinary patience and efforts in acknowledging and meeting her communication needs. Dr. Hopper was cognizant about making sure Dr. Chu received appropriate services and making sure she did not miss out on any informal scientific discourse that her hearing peers had access to. Dr. Hopper also invested in Dr. Chu’s communication needs by repeating questions and key words that Dr. Chu did not understand when presenting at scientific conferences. Dr. Hopper’s professional connections also helped Dr. Chu attain her postdoctoral research position at the Scripps Research Institute. Dr. Chu’s relationship with her graduate mentor highlight the importance of D/HH scientists in finding mentors that are mindful of their specific challenges and who are willing to work with them to overcome their challenges in order to become successful and innovative scientists.

Institutional hub or distributed network: Are they mutually exclusive?

Dr. Chu is not alone in her experiences as a D/HH scientist and her experiences exemplify that despite current efforts to provide accommodations for scientists with disabilities, more needs to be done to adequately meet their needs and to adequately educate those that work with D/HH scientists.

One critical step in achieving this is to raise awareness of the issues D/HH scientists face and to raise awareness that more needs to be done. Thus, Dr. Chu was delighted when she came across the first Science Letters article and learned of the D/HH biomedical training programs that are in place in Rochester. When asked of her opinion of which training model best addresses the needs of D/HH scientists, Dr. Chu commented that the challenge with a distributed network model is that many D/HH scientists – like her – have never met a fellow D/HH scientist, and still do not have a network of D/HH scientists. Indeed, D/HH scientists are very few and far in between, and an institutional hub helps address this by bringing D/HH scientists together in Rochester so that they can more effectively prepare themselves for a biomedical career. She applauds URMC and RIT’s efforts in taking the necessary steps to actively train D/HH scientists and to make available the resources needed to ensure their academic success such as mentoring, career guidance, communication-accessible events, and highly trained sign language interpreters. Dr. Chu also remarked that bringing together scientists that share a similar social identity also contributes to community building and a sense of belonging, thereby reducing the social isolation many D/HH scientists experience.

Dr. Chu also advised that the hub model could reap even greater success by borrowing a few tactics from the distributed network model, underscoring that the two training models may not be mutually exclusive. For one, in addition to the D/HH trainees, the hub model would benefit with active participation from the trainees’ research mentors and other hearing scientists that D/HH trainees interact with. Educating hearing scientists on the appropriate use of sign language interpreters and on effective communication and mentoring strategies would also assist in minimizing the communication obstacles that D/HH scientists face. Moreover, networking events that connect D/HH scientists to the greater Rochester community would also raise awareness, foster collaboration between D/HH and hearing scientists, and contribute to a sense of belonging to a community.

So, in the vein of promoting further debate and discussion, what can we learn from an outsider’s perspective? Perhaps by acknowledging and incorporating the strengths of each approach, both the institutional hub and distributed network models could realize even greater success in their mission to train and prepare D/HH scientists for successful biomedical careers.

Tracey Baas | 10/16/2017