Deafness and Academia – A conversation with Wangari Joyce Ngugi

Following up on our previous episode with Joyce Wangari Nugi, in which we talked about Holistic wellness and mental health in research careers, this episode is about Wangari’s work for the deaf community and deafness in academia.

We are joined by N’kadziri Aminah Idd, who facilitates sign language interpretation throughout our conversation (see the video below).

Related resources

• deafculturethat.com/category/deaf-academics/

TRANSCRIPT

Jo: Hello. We are here today with Amina Angadziri Eid and Joyce Wangari for the new episode of Access 2 Perspectives Conversations. We had an earlier episode with Joyce Wangari Ngugi a couple of weeks ago where we talked about her career and also her input in all kinds of work with African scholarship. And we mentioned in the podcast that we’re going to talk about her work with the deaf community, which we didn’t have time to cover in the previous podcast. But now we are here, as mentioned, also joined by  Amina Angadziri Eid, who will help us translate with sign language, Kenyan sign language to the Kenyan people but also for the international deaf community. And yes, thank you very much for joining and thanks to both of you, Amina and Wangari. You won’t hear Amina, but you can see her in the recording to this podcast that we’re going to put on YouTube. So welcome, Wangari.

Joyce: Thank you for inviting me once again. 

Jo: Sure. It’s a pleasure. Let’s maybe start off with terminologies around people in the deaf community. There are terms like hearing impaired or hearing loss that occur to people who don’t hear so well or at all. What do community members prefer to be called themselves or referred to? And what are the terminologies that exist besides these two or three terms that I mentioned?

Joyce: Yeah. Definition and meaning are very critical in the field of deafness. And if you look up a simple Google search on deaf definition, a lot of them will come up. But I would say that the meaning of deaf in English is inability to hear. So those who are unable to hear either completely or partly. Some people have been totally deaf since birth, some partially, some become deaf. And so therefore you have a host of different words like late deaf and oral death and so on and so forth. We also have the word hard of hearing, which refers to a hearing loss that’s actually not so severe, it’s partial inability. It could be one year that’s unable to hear or both to only some limited hearing ability. Therefore, many people who are deaf communicate using sign language. Now there are some words that are not preferred by the deaf community, such as hearing impaired. Impaired implies a lack of a loss and the connotation has also been connected to this thing of being unwilling to hear or pay attention. That’s the reason why a lot of these otherwise are actually not ideal. Another one that has been used a lot is hearing disability. The deaf community happened to have two identities or more. You could say that they consider themselves as people with disabilities, but on the other hand, they are culturally deaf. In other words, they see their deafness as a sense of pride is just one diversity in their identity. So we keep ordering people. And when we talk in social Sciences about ordering, we’re talking about this distinction of ‘us’ versus ‘them’. But they don’t see themselves as really having a disability per se. The disability is in the environment around them now. It gets interesting when you translate the word deaf to Kiswahili and other African languages. Kiziwi is the most official word, but it has a diminutive prefix, ‘ki’ and ‘ki’ is used to refer to objects and things, and therefore kiziwi has now been rejected by the deaf community in Kenya, and another very popular word that people like to use on the streets is bubu. Bubu is also not a very acceptable word. Of course, we know in between conversation and within the deaf community there are insider jokes whereby a deaf person can call the other person bubu, which is a very peculiar phenomenon about being friendly. And if you know me well enough to pass a bad joke, but otherwise the official word that is preferred is deaf, and deaf is a positive word. And the W.H.O mentions that hearing loss of 20 decibels are better in both ears. People who have less than 20 decibels are people who are not able to hear, they don’t have normal hearing, and therefore they exist in a variety, as I said, of types as well as hearing levels, and therefore we call it deafness status. So you can either be deaf or hard of hearing. I think it is important to also highlight because deaf culture is now recognized under Article 30, paragraph four of the United Nations Convention on the Rights of People with Disabilities, the very famous CRPD documents. And in that document, deaf culture is actually celebrated, and we need to do more of that. The UNCRPD recognizes deaf people are fully capable of making informed and powerful choices as citizens, and therefore there should not be any other way to look at them except a right based model instead of a charity model or medical model. Thank you. 

Jo: Thanks for explaining this. I’ve become aware of the term “disability” that’s like a negative connotation because it contains the word ‘dis’ meaning something is missing or lacking, as you also extended with the word impaired, which I wasn’t so aware of, so thanks for highlighting this to us. 

Joyce: Yeah, you’re right. Some people will prefer to say differently abled instead of disabled or disability. But again, disability, I would say, is more widely accepted because the deaf in Kenya will consider themselves as PWDs people with disabilities. And we say people, not ‘person’. So it’s really interesting the nuances and the connotations of each of these definitions and where they are applicable, especially on a more pragmatic level. For instance, for the deaf, once they register as people with disabilities in Kenya, they do get benefits as people with disabilities, but at the core, they still believe they are culturally deaf more than anything else. 

Jo: Yeah, language is powerful indeed, and it’s important to reflect on it every now and then and to, of course, show concern to what the people prefer. How did you get involved in working with people and persons or with people as a group? 

Joyce: Yeah. My elder sister and she gave me permission to share this. I have two older sisters. One of them had a problem with one ear. And so constantly my mom and my dad had to take a chance to stay with her. She was admitted to hospital for a long period of time. And I began to reflect upon how our family really had to shift around because one of us was sick. And I became really curious. My sister would tell me things like, you have two ears, I can’t hear very well. I don’t want to keep repeating. She would get upset if we were playing. And I told her to say something again. She said, you can hear properly, I can’t hear. And after today, she still goes for treatment for her one ear. So it is possible for somebody to have an ear problem and not a hearing problem and sometimes both cannot co occur. Currently, she doesn’t have a hearing problem. It was fixed, but the ear problem still is there in the anatomy of her ear. Her ear drum has a little hole. So then I became curious and I began to research famous deaf people online. I got into many deaf communities. I’m currently a board member of a high school of about 60 high schoolers who are deaf and hard of hearing. I am also quite involved now in the community and I’m a trained and certified sign language interpreter as well as a consultant on deaf mental health. And it never ends because it’s a small community and you always get invitations to different events. And I’m still learning. I ‘m also very curious about qualitative research. When I am thinking about positionality, I have to keep thinking about who I am, my identity inside of the deaf community, constantly reviewing and remaining with the humble mindset because you never stop learning anyway, there’s a lot more opportunities now than ever before in this side of the world. We know that disability infrastructure is better in more developed countries and in those countries that I like to call the majority world, we still have a lot of problems with inclusion. And I’m quite curious to advocate and be an activist for disability rights as well as deaf rights. 

Jo: Thank you. And you also work at USIU, United States International University and you started a working group there, isn’t it? 

Joyce: Yes, actually. Thank you for mentioning that. I’m very excited that the fruits of our team have now come to pass. And I was part of the task force of the People with Disabilities and other special needs. So we came up with a policy to have USIU inclusive of people who have different disabilities and out of the task force. And now we have just gotten a new hiring. They’re now sending out job applications for people who would like to join the Office of Disability Inclusion, including sign language interpreters. I was also the co-founder of the Sign Language Club, the only club in USIU at the time. I hope it’s still not the only one. Now that actually is all about the rights of people who are deaf, and it’s about sign language and deaf culture training. So I’m really honored to have worked under Dr. Josephine Rafa, who was the chair of the committee, the task force, and we came up with this policy, which other universities are now very curious to learn from us and to actually apply it because it’s quite comprehensive, detailing all the different infrastructure and personnel and different resources that we need at the University. 

Jo: Yeah, that’s really exciting to hear. Is the policy online? Is it accessible online?

Joyce: Actually, currently it’s private. It took quite a lot of manpower to put it together. I could speak to the chairperson about whether in the future it will be, but we were under very strict instructions. It was a closed group, so at least the University has adopted it, which is the most important thing. And now we will begin to see true inclusion for the first time ever. Now we can admit students who are deaf and have different disabilities, and we’ve only had a few disabilities at USIU in the past, like people using wheelchairs and others, but we haven’t had full inclusion. But now it’s becoming a reality. So it’s really exciting. 

Jo: Yeah, that’s exciting. I’m asking this because we can put reference materials on the show notes and to the listeners, you will certainly find something that’s regarding sign language and other resources that USIU is providing. And maybe also beyond that , what best practices have you from the top of your head? How should universities and research institutions equip themselves to accommodate the deaf community as staff members, as active researchers? What additional features would be necessary to apply at the work? 

Joyce: So first of all, we have to understand that the biggest barrier is attitudinal. Therefore, inclusion has to be explained in a way that provides advantages. Many times even if we have the infrastructure and people with disabilities will join educational institutions, they still face a lot of attitudinal barriers. So first and foremost, training on disability inclusion, deaf culture and sign language would be the first step. Then secondly, hiring of personnel who interpret sign language in specialized fields. As you know, in higher education, we have technical words for different fields. And so you would want an interpreter who’s tuned in and quite engaged in, for instance, a very specialized subject like psychology, so that they can assist the deaf and hard of hearing students to efficiently learn and to communicate. And so we know that the three major barriers infrastructurally for the deaf and head hearing are communication, information and language. So we want to increase communication through normalization so that those who feel less able to sign can still be friendly to the deaf and not socially isolate them. And then for information, we want to increase visual format. So in many places, for instance, at clinics, bus stops, we use a lot of audio notifications. So you’ll find at a doctor’s clinic there’s an overhead speaker announcing who’s going next, even at banks. But then now you find in banks you’ll have sticker numbers that are also visual that increase the interaction and information formats so that those people who are visual learners and visual communicators can actually see. And then, of course, for language, training on sign language is not to mean that everybody must be fluent inside. No. But obviously we want to increase access to certain academic and extracurricular opportunities that can involve more deaf and hearing people. So those are some strategies for an inclusive space. And those adapted technologies should also go into translatorations. For instance, if you have a document, you have to think about which format would really, really work for people who are more visual than auditory. So a webinar like this would have a captioned and also really well created English subtitles so that people can all feel more accommodated than included.

Jo: Yes. So the necessary steps are really not so difficult to implement if you think about it. And it’s quite tangible actually, to put captions is nowadays also almost by default for many organizations and institutions to have in the webinars and maybe to also employ or recruit sign language interpreters like we have here with Amina Angadziri Eid. Again, thanks for joining us. 

Joyce: Yes. And I’m glad she’s here live. Nowadays there’s also live remote captioning. She doesn’t have to be here. She can be in another part of the world like we all are from different parts of the world right now. Other simple accommodations are like preferential seating and then very importantly, recruitment and mobilization. So you might create all the infrastructure and the training and the policy, but then you have no student who’s able to join because maybe the cutoff score to get into University is so high. And we know that a lot of people who are deaf and hard of hearing have had a lot of challenges going to higher education because of low grades. And this is not because they are less intelligent, it’s because of inferior education. They have not been able to access a good quality education. A lot of their teachers are not well trained in sign language. So therefore, their learning was already affected from earlier years. So modifications in the admission process to help students who adapt to access learning so that they can come in. And then when they are having ongoing conversations on how best to accommodate them in the classroom, they will mostly prefer to sit at the front because of just the visual distractions to avoid all the distractions between them and the lessons. So things like those and ongoing adjustments come in. If you have a leader who can actually advocate for really good attitudes, and through sanctions and through, should I say punishment for those who actually are discriminatory or oppressive or abusive to people who are differently abled. Those things need to be implemented inside of a framework. What do you do then when you find somebody who’s maybe insulting a student who’s different, that should not be left to pass. That act of discrimination should be dealt with decisively. 

Jo: Yeah. Obviously to protect the community and the individuals. We know that as humans, it’s important to have role models. Can you mention maybe two or three researchers or educators that have succeeded despite their presumed disability, which might not necessarily have to be one if there’s an enabling environment at place that we can also mention. 

Joyce: Of course, we know famous deaf people world wide. Ludwig van Beethoven is a common one. He composed beautiful music and as he became deaf, increasingly deaf, it did not affect his musical composition. Many people don’t actually realize deaf people are also very musical. There’s nothing that takes out musicality from somebody who’s deaf. Then of course you have Helen Keller who is both deaf and blind. She’s really inspired a lot of deaf people to also work with deaf blind people because deaf people also, some of them also happen to have the gift to do tactile communication with the deaf blind. So Helen Keller, a global figure, is very well known. There are others who are less well known. Marley Maclin, famous American actor. Now coming home, I could talk of Professor Mike Rumo who was actually inspired by the father of deaf education in Kenya who unfortunately died in a plane crash. And that was Dr. Andrew Foster. He’s an African American man who was going to meet Professor Mike Rumo for another meeting of just installing sign language and deaf culture in Kenya, professional systems and all. And so Doctor Andrew Foster has done some amazing work of institutionalizing the deaf in various industries, education, healthcare, different things like that. And then Professor Mike Andrew Rumo, there are many others I could mention, but I think let me stop at those five. And I would say the deaf community is an inspiration. Every day they wake up and they are quite resilient despite many barriers in the environment and in society. They are also quite inspiring. Jo: Please tell us about your everyday work in Africa and we’ve done some work together thinking about diversity within the program that we mentioned in the previous episode which is now being built towards open peer reviewers in Africa. But we also had Amina present for life interpretation in sign language as well as accommodating Arabic and French Besides English for the workshops. But is it difficult to implement and include interpretation and sign language into programs or is it just a matter of getting the team aligned and then let’s go for it? Let’s do it. Joyce: Yeah. Thank you for the question. I would say it’s a good challenge, what you would call a good problem. So I founded an organization called Guirra Communications Foundation, which is my legacy project. And I’m now able to implement a lot of the work I did in my doctoral dissertation. So my doctoral dissertation was on deaf adult mental health, and I was looking at their psychosocial support concerns at home, at work, socially, also their personal private leisure, as well as family and relationships, and how that is correlated with depression. And we found that actually there is a correlation between mental health concerns and access or Inaccess. And so at Guirra, Guirra is a Wandis word, which means kindness. We are spreading kindness all over the world and we would like to end the stigma, the shame of this disability. Unfortunately, many people consider deafness a low incidence disability. There are not so many people who are deaf in any population, and therefore because of that, they think it is not important. And so that presents the biggest challenge. When we would like true inclusion. So many organizations, individuals, entities will give lip service to disability inclusion. But when it actually comes to allocating funding and really centering the issues of people who are differently disabled, at the end of the day it becomes a push and pull tug of war. And with the resource limitations, I must say we’ve also not prioritized enough. Usually those of us who work in the disability community know that if you include people with disabilities then everybody is happy, for instance, in a building, if you decide you’re going to put a ramp, guess what? Those people who use wheelchairs, plus people who don’t use wheelchairs, all of them will benefit from the ramp. And if one day you need to use a trolley or some day have a bag or something, you can use the ramp. So including people with disabilities is not an inconvenience. It’s actually a very vital component of development. But to foster such a disability inclusive relationship is not easy. It comes with quite a number of challenges about people not being supportive, positive, or confident about what is possible. And also continuously implementing this program becomes a challenge because those organizations or institutions who decide to do that will do it on a one off basis and therefore it’s not sustainable. While there’s been a lot of affirmative action, we’ve not yet found strategies or self advocacy measures by the deaf people themselves that would have them included continuously over and over and over again. So the integration and mainstreaming aspects are complex. If you look at the media currently the portrayal of the deaf are either superheroes or objects of pity. So currently we are not yet there. We still seem to use the charity model a lot when we think about, oh, we need humanitarian support for these people, rather than thinking of them as full citizens with full rights to access different types of services across the board, whether it’s government services, healthcare, education, and so on and so forth. So the most typical challenges are attitudinal, infrastructural, and even just literacy on what it would mean if your organization has a disability friendly policy. For instance, in Kenya, 5% of any organization needs to have people with disabilities as employees. So, for instance, if you have 100 employees at your organization, at least five of them need to be differently abled. But it’s not clearly delineated. It’s not clearly explained exactly how we will go about ensuring this and how to measure it and how to mitigate against the most typical challenges. I’ve been in several situations where people with disabilities have literally been chased away. There was a lady friend of mine, I was helping to get a hotel job. She wanted to work as a waitress to serve food and beverages to customers. And the boss in the hotel just literally chased us away. He said, no, you cannot work here, you are deaf. So this is a very typical scenario when deaf people say, here we are, we would like to be included, and therefore, how then can we foster deaf inclusive participation that’s meaningful over and over again? We need more constructive partnerships with strategic stakeholders. The government cannot always pass the back to well wishes as it is currently doing. That does not work. The government needs to have impactful action. Set up a registry of sign language interpreters and deploy them in every of our 47 counties in Kenya. And then we need to ensure ownership and buy in of the initiative by the people with disabilities themselves. There’s been a lot of apathy, too, and land helplessness because when we have a vision, we may not include them fully in every stage. And therefore, when they are left out, they don’t just show up at all. And so we need quite a comprehensive strategy to ensure success and sustainability of disability inclusion. 

Jo: Yeah, I like the way you phrase or how you explain that looking at accommodating inclusiveness for deaf individuals should not be seen as a burden, but as an opportunity to also be more inclusive of anyone really wanting to participate. And we see that, as mentioned earlier in this episode, with live captions to a webinar or sign language interpreter, we basically have the opportunity to watch the recording without sound and still get the, for example, follow a presentation and still be able to read what the presenters say at the same time. And that’s beneficial for anyone as well as deaf people, isn’t it? There’s many other examples that we can pull out. Also with the example of the waitress, even if they’d be I was going to say hearing impaired because I thought it was a good term and now learning it’s not, so deaf waitress and waitresses. Why not? Because there’s many devices that can give visual signals. If somebody has an order to place and you don’t really see it, because if somebody’s calling on you and you can’t hear it, there are other ways to call for attention. How do you see artificial intelligence tools coming up on the market? Like I mentioned, algorithms and programs for live captioning. Is this helpful or beneficial? And would that be a threat to live interpreters that are real humans, real persons like Amina? Or can it be used complementary in a way that’s beneficial for anyone and doesn’t threaten the job market for live interpretation? 

Joyce: I think it’s all welcome. A.I technology helps students who are deaf to learn where interpreters cannot reach A.I, such as the YouTube closed captioning will auto generate the words and so deaf people can follow. And even when a sign language interpreter is present, you find that it augments what the live interpreter is doing and they are able to follow written text as well as the expressions on the face of the interpreter. So I don’t see this as a question of either or. I would say that now with technology, we are enjoying a lot of benefits, such as transliteration. You can also have texts that are transliterated from standard English to more fine versions that are easier to actually follow and read. Then we also have aside from AI technology and sign language interpreters, we have deaf interpreters, fellow deaf people who can take the non standardized signs, what we call home signs that are invented at home, and fellow deaf people can interpret to the standard sign language interpreter. For instance, Amina, who works in the court of law, has had experiences where you have a deaf person who cannot speak standard sign language. So you get a fellow deaf person to stand next to them and interpret the home signs into standard sign language, and therefore, then she’ll pick up the standard sign language and voice it in English. One of the things you’ve got to remember is also that the deaf and hard of hearing are early adopters of technology. And I wrote a Journal article just on social media used by the deaf in Nairobi to do business. Yes, I’m going to share that. It was published under the University of Nairobi journal.

Jo: Brilliant. Do you have deaf individuals in the Eidar Africa community and how is the collaboration there? What’s the typical engagement interaction scenario between the deaf and non deaf individuals of the community? 

Joyce: Yeah, thank you so much for the question. Yes, we do have a couple of scholars. Eidar Africa runs a program called the General Class, which is a volunteer space for any scholar who would like to join. So far, I think I’ve seen only three out of about 1000. That tells you that a lot more needs to be done. And by fostering more close collaborations with universities, we can spread the gospel of research mentorship for the deaf who have enlisted in our program. They have found great use and benefits in joining our live sessions. We’ve had live meetings, group meetings, as well as online group meetings where we do webinars or mentorship or training. And we try as much as possible whenever somebody signs up for a particular program that we can accommodate them fully. My work with the desk goes as far back as 2006 thereabouts, so it’s been a great 16 years. But the highlight was actually in 2018 when I got a global award for my work in deaf mental health. I had deaf people throughout my research as participants and also as research assistants. They also assisted in analyzing the data and recommended that I do a confirmatory FGD, a focus group discussion to just confirm the findings from the individual interviews, which was a really great recommendation. It really brought out rich information from my research on deaf mental health. So I would say it still feels like it takes one person to do a lot of their efforts in a more solitary way. It feels like. But without the one person who leads the change, then there is no change. Luckily Eidar Africa General Club is a really dynamic space and there’s no bureaucracy. A lot is welcome. We need a lot more volunteers. It’s very expensive to actually hire a sign language interpreter like myself who is trained or like Amina. And that’s one of the challenges. That’s one of the barriers currently we are facing. Our financial model is based on well wishes. We have a crowdfunding page, and so we’ll be appealing to a lot more scholars who would like to enter the new frontier of research mentorship that’s targeted for people with disabilities. We are yet to do that targeting work. We’ve had just a nice welcoming space, but we are yet to really go into the nuts and bolts. 

Jo: Yeah. So that’s also important to mention, I guess, to budget appropriately for the facilitation necessary and to budget for an occasional or consistent salary for a sign language interpreter is essential if you want to be an inclusive organization or program. And I’m very happy to hear that Eidar Africa is doing that and considering and also facilitating opportunities for inclusion as much. And thanks to your expertise and being able to inform the organization as a whole, to be inclusive and become more and more. So I’ve learned a lot in this episode from you after our conversations about mental health and academia in general. And it’s also heartening as much as uplifting to hear the mental health and challenges that are present for the deaf community and uplifting in the sense that there’s so many and so many easy steps we can take to ease that to come together as human beings that we are also in our research community. Is there anything else you would like to mention before we end this episode and hopefully also meet again in a future episode? 

Joyce: I’d like to say autism is discrimination or prejudice against individuals who are deaf or hard of hearing. We need a lot more training on autism, and we need to increase access. And access needs to be available. The users need to be aware. It needs to be accessible, affordable and of good quality. We are yet to get there, but it is one step at a time. It is doable. Thank you. 

Jo: Thank you very much, Wangari and thank you again also Amina for joining us today. I’m looking forward to hearing and seeing and reading more of your work and also trying my best to implement and facilitate the deaf community also in the work that we do with access 2 perspectives and Africarchive, Asante Sana.

Joyce: Alright. Thank you.