What it takes to include Deaf voices in scientific research

In this episode of Science Engaged, I speak with Melissa Anderson, PhD, Alexander Wilkins, PhD, and Timothy Riker, MA, who are experts in research engaging the Deaf community. Both Anderson and Wilkins are co-directors of DeafYes! Center for Deaf Empowerment and Recovery. Together with Riker, a senior lecturer of American Sign Language at Brown University, they conduct research, counseling services, and community outreach that centers on Deaf health. In 2021, they published a study detailing the experiences of Deaf individuals in the research world and made recommendations on how researchers can be more inclusive towards the community.

Riker, Anderson, and Wilkins emphasize the importance of using American Sign Language (ASL) and involving Deaf community members in health research from the start. This includes providing accessible research materials, nurturing long-term collaboration, and adapting to various individuals’ priorities. They highlight the need to be flexible and attentive. 

This episode is made possible by support from Schmidt Sciences and the UC Santa Cruz Science Communication Catalyst Grant. Special thanks to Fanuel Muindi for co-producing this audio program. 

Below is our conversation, with support from three American Sign Language interpreters.

Kristel Tjandra:  Welcome to Science. Engaged a program about why and how scientists partner with diverse communities. I’m your host, Kristel Tjandra, and today I’m joined by our guests, Alexander Wilkins, Melissa Anderson and Timothy Riker, who are research experts in science engagement with the deaf community, Melissa, Alex and Tim are using American Sign Language, and this conversation is also being facilitated by ASL interpreters. Welcome everyone.

Timothy Riker:  Hello. Thank you.

Kristel Tjandra:  Today’s conversation centered around a study that the three of you published in 2021 titled “Application of the Truth and Reconciliation Model to Meaningfully Engage Deaf Sign Language Users in the Research Process”. As part of that study, you invited deaf individuals to share their experiences in the research world and make recommendations about how scientists can better include them moving forward. So Tim, to kick us off, can you tell me a bit about yourself and this study?

Timothy Riker:  Hi, hello, my name is Tim Riker, and I’m a second generation deaf person, meaning that I grew up deaf with a first language of ASL. My parents are both deaf, so my experience was already born into the deaf world, if you will. My family is very diverse. They use diverse languages within my family and different technology. So we do have our own dynamics, and the community themselves has a lot of diversity itself. Growing up, going to school at the Maryland School for the Deaf that I was, I cherished the deaf community involvement in that location, and there was a platform to make decisions In research to study that impact. So at Brown University, I taught ASL and Deaf Studies. I met Melissa there. She was very motivated to include deaf into the research, and I agree I was interested in that idea. I got involved. And certainly that initiative to involve deaf researchers, we did our best to pull in deaf community members and move forward. Currently, I’m still involved at Brown University related to their pharmaceutical school, medical school. We moved here to, I’m sorry, Minneapolis, Minnesota, and I’m continuing that involvement working with the deaf community here, Deaf immigrant, deaf, blind community. I hope to continue that endeavor for the rest of my life.

Kristel Tjandra:  That’s wonderful. Melissa, how about yourself? What was your role in the study, and how did the research team decide on the study design? You know, you can talk about the format of the forum and why it was effective.

Melissa Anderson:  Absolutely let me start with a little bit of explanation about who I am. It’s important that we set up how my background led to this study. I am individual. I’m not deaf as Tim and Alex are. I didn’t get involved with the Deaf community until I was about 18 or 19 years old. ASL is my second language that I learned later in life, the audience will learn today that people have experienced a tremendous amount of oppression from the hearing world, specifically in the medical setting, as well as the education system, in a variety of other organizations and systems that deaf people should become more like hearing people, knowing that long history of. Oppression that occurred between, you know, hearing people oppressing deaf people. I noticed that I, myself as a hearing individual, kind of represent the hearing world to the deaf community. For this study, it was critical that we recognize the privilege and also as a hearing researcher working within the Deaf community, how the community would perceive me as a hearing individual. So Yes, Tim has already mentioned that we did start with a discussion and then a collaboration early on, prior to even writing the grant and making this proposal, we want you to discuss what should be included in this research. What approach did we want to use? How could we build this collaboration from the beginning, at the same time, we also recognize that the local deaf community of Massachusetts and Rhode Island the New England area, really no idea about our team. They even we were, they Oh, Melissa. And so we felt like before we could actually start doing any research related activity, we needed to look at the informed consent and achieve that we had kind of back up and establish real strong foundation of trust between us and the deaf community. So that’s we started with. Being a community forum. We invited deaf community converters to come together, and we explained, had them explain about their experiences and what they have seen, and we listened. We acknowledged their experience, what it has done for that community in the past and the present, we can explain a little bit later on this, but we did apologize for collective experience, and we made a commitment to do better as we move forward with this project. We felt for any research moving forward from our team, we had to go back to the beginning and start with building this foundation of trust that it was critical. Tim or Alex like to add anything 

Timothy Riker:  Tim says a short comment on that within the Deaf community, it’s maybe a new experience to be asked to lead research or to be involved with research, sometimes it’s new and it their only experience might be, you know, reading research in high school or going to library to read research papers. It’s much more than that when you’re truly involved. And so there could be misconceptions we have to advocate, typically, that the deaf community

Timothy Riker:  We need to have open forums would depend on people willing to listen. And so we have to change the system a little bit so that it’s more Deaf lad in that way.

Alexander Wilkins:  So, hi, yes. This is Alex here. I work with Melissa at the University of Massachusetts, and so I joined this team about, I think, wow, seven years ago now, it’s been And anyways, the one thing I wanted to add to this point was that it’s not just about the barriers and the impression that’s been had. It’s also about the ways in which research on Deaf folks is presented. Often, research is presented to deaf folks in written English, right? It’s academic. It’s very dense. It’s not easy for lay people to understand. And now, if you think of people who are acquiring English as a second language, it’s even more cumbersome for them to read and conceive of the different or understand the concepts that are within that research. So there’s even more inherent barriers at play.

Kristel Tjandra:  Yeah, that’s very helpful insights. Alex, I want to hear more from you. Are there other major barriers that you’ve seen in terms of reaching deaf community that you wish people are aware of? I.

Timothy Riker:  Absolutely, yes,

Alexander Wilkins:  Yes, definitely. So I think there’s, you know, some key barriers I’ll identify for you, first being research in the broad sense. You know, doesn’t always hone in on Deaf specific needs. You know, Deaf folks might see postings about research, or emails about research you know, or different folks will, you know, you’ll get maybe you have a disorder, and you’ll get invited to be in a research study for that. However, when deaf folks are invited to these types of things, the assumption on their part is that while they’re probably not going to provide an interpreter for me, they probably won’t provide those accommodations. So why even be involved? Obviously, research isn’t for me. It’s not compatible to me. But also, if we look at those researchers who are more thoughtful about engaging the deaf community and getting their input, often, the deaf community will participate, they’ll share their knowledge, and then the researchers just leave. There’s really not a sense of long standing collaboration or sharing the researchers goals for this research, not talking about how the researchers and the community could work together to build this collaboration, and it feels more exploitative that relationship. There’s a really good quote from that I remember from someone at the community forum. I won’t be able to get it exactly, but there’s someone said, Who benefits from this research you all do, and you’re the ones who get these higher salaries, you get notoriety, you get promotions and we’re left with nothing. You want us to help you, but why you’re not even going to do anything to change our lives? So I think that’s really the root of what the deaf community is feeling, that the you know, research isn’t for me, it’s not even to serve me. So why should I participate?

Kristel Tjandra:  That’s definitely a very important point to think about, Alex, and I want to ask you, you know, with this study, obviously the community forum format is really important for the three of you, so that you can sit down and listen to people’s thoughts and opinions. What have you learned from that and what have you take away from that study going forward?

Alexander Wilkins:  That’s a great question. You know? I think maybe the biggest lesson, or biggest takeaway, was, talk is cheap, you know? I mean, you know, we can apologize, we can commit to doing better, but the deaf community is like, Okay, let’s see your actions, then let’s see you actually do better. And you know that really shaped our mission for this deaf yes center, and how we go about doing our research and how we ensure that we’re engaging and including the deaf community and various stakeholders. You know, we want our research to be advantageous for the deaf community. We want to give back. We want them to benefit from our research, you know. And we want to benefit from them as well. But I need to make sure that my community, the deaf community, benefits from the research as well. I don’t know if Melissa or Tim, either of you would like to add

Timothy Riker:  Tim speaking, I’d like to say about that open forum format, this general audience approach.

Timothy Riker:  A follow up study, we decided that we might have a more intimate group and space with for more practical reasons, really, because everything was remote during covid and zoom had a limited number, but still, the smaller group did allow for greater participation, and people were more comfortable in that smaller space to really share their perspective and experience. We certainly learned a lot through that, and I think that it can certainly be applied in future research.

Melissa Anderson:  And this is Melissa, when I look back and think about it, the opening of the community forum. There was a technical part of that was a technical part of the study, but it was really the initial setting for all the research we’ve done today, and we will continue to rely on that foundation to support our future work. As Alex said during the forum, we were thinking or predicting that apology would just have a real high impact on people, and people feel inspired. And we were wrong about what we were anticipating. People were definitely like, yeah, sure you’ve heard this story before. We want to see action. So during that experience, we made a commitment to do better in three areas, specifically community engagement, to be more transparent and visible with our work, and third, to make sure that we’re always giving back to the deaf community that has informed our work. And I feel like we’ve done a good job. It’s not so far, and that is showing that’s what we have committed to in 2016 and 2017 we’re doing the work, but we need to maintain those commitments of those three areas going forward, if at any point we don’t follow that commitment that will just our trust will be broken at that time.

Kristel Tjandra:  Yeah, what I’m hearing here is that it’s really important to meet people where they’re at and really to build a long lasting relationship, not just a once off, you show up and then the next day you disappear. I know that three of you have done many other studies with the deaf community. Can you give me some examples of how participation by the Deaf community has shaped our scientific understanding on important topics.

Melissa Anderson:  Tim and Alex, well, Tim, you’ve already mentioned one of our next studies that we’re working towards contacting various focus groups, and I’m wondering if maybe the two of you could talk about how we learned from this focus group and what we learned, and how they shifted our work that we followed

Timothy Riker:  Tim. I’d like to say something about that sure this is Tim. I think it’s important to know first of all, the deaf community, just as mainstream society, are not homogenous. For instance, when we design our study, it must consider the fact that there’s intersectionality among the deaf community, and there are different roles that the deaf community is involved with, lay people all the way to people who specialize professionally with inclusion and bringing in different community members, people who, perhaps you know, were involved with dei previously. Now it’s a dirty word, right? But those people who were really on the front lines of advocacy for years to support system change, those people who have lived experience as a deaf person and also as a health care provider, that transition between both worlds in that capacity, so they are aware of the contributions that can be offered through the research like this that ensures we Have an intersectional approach to our research and gathering data, people, there are subject experts, of course, and we want to get the strongest possible result from our studies, so we bring them on.

Alexander Wilkins:  Yes, we definitely have a lot of different perspectives at the table, and that has definitely enhanced the results that we’ve gotten. Something that we definitely learned was in terms of our timeline. You know, when you think of typical research timelines, they’re finite, sequential, right? But we had to integrate some more pieces. We had to integrate all of these different perspectives, building of the trust with the community, getting them engaged. That really slowed down our timeline, because we were diligent in ensuring that we were at a pace where everyone felt like they were on the same page. They understood. Good, they felt confident in being able to contribute. And I think the second point, you know was another shows just another great example of how you know, you can have some challenges in regards of negotiating different needs, priorities, goals. So we actually ran a second version of this healthcare access video. The original version was filmed back in 2018 right? I believe it was around there 2018 so, you know, we thought it’s time, time to revamp, touch it up a little bit, and we had some additional pieces we wanted to add in. So we thought that this would be a great time to add in the research information as well as information on healthcare access. So as we got going on the project, we held various focus groups with deaf folks who are involved in research, who are involved in the healthcare world. We also had people who could hear from the research world, the healthcare world as well in those focus groups. And we had deaf community advisors on our team who suggested inviting the broader deaf community. So we did so, and because of that additional focus group with that additional group of constituents, we we know that the engagement is so important for research, but what the community ultimately needs is improved healthcare access period. That’s the ultimate goal. So we were trying to figure out, okay, what to do, because this changes the complete scope of this project, having this broader scope. So we contacted the chief officer at NIC DHH, the program officer. And you know, we explained what was going on, what our situation was, that we had to deviate from our original plan, and that got approved, thankfully. So then we decided to just ditch the entire video that we had already made and come up with a whole new one, and it’s designed for healthcare professionals, and it has been received very well by the deaf community and by the medical community, I have to say. So I think the deaf community recognized, okay, there is a need. We need to educate the healthcare community as well as support the deaf community in healthcare, access and so just to have them all involved in that was truly just invaluable in this research being successful.

Timothy Riker:  I’d like to add, this is Tim, a short comment. I’m thinking of what’s most important to recognize our research team had many deaf people involved, also we had very many different personalities and experiences to navigate among that team, different barriers that each person had faced and the collection of data. During once we collected data and during the analysis, we noticed there’s a huge emotional load associated with the work, not just the time and the effort, but also just a huge emotional load with listening and recording these experiences from Deaf community members. It could be even that healthcare provider had their own challenges, their own assumptions and barriers to that, and so it really impacted the research team in a personal way that we needed to ask for change. There was a lot of discussion and analysis, and I wonder what would be best for that research project, so that we could maintain a direction with the health of Deaf community members. It’s, in general, disempowered and underprivileged within the community. This is Melissa.

Melissa Anderson:  I think what I hope people will take away from these stories, people who were involved in our focus groups, we listened to them, we listened to these people’s stories, and we documented what asking for, what The prayers were the community, and once we realized that, our project was not feeding fitting the Deaf community’s priorities. We showed this unih And we if we make modification of the entire project so that we could meet. Those Deaf Community Priorities, thank God, and they approved that change, and we were able to go forward. What I hope is that remember that there is possibility to engage and advocate and to influence research process in a big way. By doing this, the project that we had completed was not what we had initially started out as our goal. It ought to completely cause the community needs prior I would like a brief comment about another research project we’ve been doing research related to mental access and addiction recovery access as well. All of our team, the Deaf Leadership, Deaf community that was engaged. I’m amazed the creativity and ideas came up during this team meeting with everyone. As a researcher myself, these were things I never would have my own. But as we came together this team collaboration, we figured out ways to continue with that community engagement and make our needs and priorities just an example for one current study that we’re looking at now. Platform, where we’re able to look at team members and the person select the person that they want during the informed consent process. Normally, informed consent research staff would just show up meet with candidates, but at our project, we wanted to empower the person coming in to give informed consent the ability to make a selection so that we could match whatever priorities they had, whether it be racial, ethnic, language, communication, someone who signed in a more English based or whether it was pure as style we wanted a community member to look at someone that they felt they could work with. So that was our way of empowering the community person to be engaged. And that was not my idea that came from the deaf community, that came from our team when we got together. So that’s just one example of the benefit that we got out of this process. We are doing better research. We are more sensitive and comfortable in our research because of the ideas that we’re checking during these team meetings and the team members that came together.

Kristel Tjandra:  Yeah, what I’m learning here is being attentive and being adaptable are very important in terms of meeting people’s needs and yeah, thanks for sharing that experience. So in light of what you just said, What is your hope for science engagement with the deaf community? What would you like people to take away from your study and moving forward?

Melissa Anderson:  This is Melissa. I want people to recognize that engagement of the deaf community is a meaningful, authentic way as possible. It takes time to do that. It takes time. We can’t rush. And like you mentioned, we need to be ready to adapt at any moment. You can be so rigid in your approach, I think also that engagement can happen at every level of the team or the study, deaf, the. Deaf people investigator study. They might be an observer, consultant on the team. The Deaf person might staff member. The Deaf person might be our developer. So you hire deaf people at any level of engagement with the project, and it’s going to benefit all the way through, all the way through the system.

Timothy Riker:  This is Tim. I think it’s important for people to know that the deaf community so far has always felt on the outside, maybe like through a glass window, knocking on that glass window, looking through and wanting to be a part of that, and also having a comment about how the research could be harming us. So many aspects to not having enough research or resources to develop as an individual, to self actualize, we’re knocking on that glass window, and hopefully in the glass is cracked and it’s starting to fall. Maybe we’re getting a little bit we’re crossing the barrier, the glass ceiling still exists, but the breakthroughs that are part of research currently making it more integrated, not disproportionately, you know, disempowering to people. It goes back to really the education, the language access, having opportunities to engage with different teams, having the opportunity to participate in research that affects the community, respecting that journey for deaf people along the way. That’s what I really hope will change. 

Alexander Wilkins  Yeah, so this is Alex, I guess, what I would add to that is in thinking about, you know, my own training, going through my PhD program and other trainings I’ve been a part of, you know, I feel like there’s always sold this right way to do research, so to speak. And you know, you’re often taught that you need to do A, B and C to make sure that you meet the rigor for the project, and you’re, you know, doing appropriate scientific methods. And I think often that puts researchers sort of stuck in this box, in a bind, and it prevents us from really immersing ourselves in the different communities that we’re exploring. And I think thinking of the community’s priorities is just a different way of thinking about doing research. And, you know, I think it’s better we’re engaging all sorts of different people and prioritizing their needs. Because traditionally, research has been to serve straight, cis, white, able bodied male bodies, you know, and when we’re doing research on that specific subsect of people, it can’t be generalizable to the broader population, or to all these other various groups in society. So we’re trying to figure out, this is what we’ve been doing, is trying to figure out how we can still be scientifically rigid and have that rigor, I mean, and also have engagement with the community. Because we just think both are so key, voices need to be heard. We need to have representation, and it might take some patience, it might take some creativity for you to do things a little bit differently. But what we found is some really cool, exciting results, and we got to work with some really great and a lot of different great people.

Kristel Tjandra:  Yeah, that’s such an important point of breaking from that stereotype of what you know, scientists should look like or should be like, and how we should do science and turn it into a more people centered strategy. Yeah, that’s a really important point, and thanks for sharing that so well. Thanks for this really important conversation. Thank you so much, Tim, Melissa and Alex, for sharing your insights on how to better engage the deaf community in science. Now, for those who are interested in supporting or even taking part in the work you do, what would be the best way to reach you or to follow your work?

Melissa Anderson:  This is Melissa. There are a few different ways so that you can learn about our center. I don’t think we even mentioned our source name. We’re called Deaf, yes, Center for Deaf empowerment and enhancement and recovery. I. We can find our website, www, dot, D, E, F, y, E, s.org, we also do have a Facebook, Instagram, LinkedIn. You can follow those three as well to find us. You process, and before we mentioned that we want to be transparent about our work, we do post often about we’re doing projects, and we’re not going to wait until the end of the project to share, but we post monthly updates on what we’re doing for the community what we’re going to do, it’s important the community where of what’s not and doesn’t feel like just appear.

Kristel Tjandra:  Yeah. Thank you so much, and I’ll remember to post those links in our show notes on our website. Thank you again for being here. I really appreciate your presence.

Melissa Anderson:  Thank you.

Alexander Wilkins:  Thank you for inviting us. 

Kristel Tjandra

I'm a science writer who specializes in drugs and diseases. I hold a doctorate in Chemistry and have more than 8 years of experience in academic research. My research portfolio spanned a range of scientific disciplines, including drug discovery, cancer biology, microbiology, and nanotechnology. As a science writer, I bring my background in chemistry into the dynamic world of science journalism.