Sign language research: Deaf-hearing involvement and research ethics

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My topic for this week, the second week of the BSL blog, is on the relationship between ethics and deaf-hearing involvement in conducting research projects. After commencing employment here at Heriot-Watt University, I recently discovered that a joint funding bid to the EU Lifelong Learning Leonardo Da Vinci programme has been successful. The project is called ‘Justisigns’ and the goal of the project is to investigate signed language interpreting in legal contexts in various countries. The partners on the project will be from universities in Belgium (Myriam Vermeerbergen), Ireland (Lorraine Leeson) and Switzerland (Tobias Haug) as well as Heriot-Watt University (Jemina Napier and Graham Turner), and we will be tasked with exploring issues and challenges for legal signed language interpreters across Europe (also with EULITA and efsli).

The success of the funding application got me thinking about the fact that the lead investigators from each of the universities are all hearing people. These people have many years of expertise between them in conducting research on sign language and interpreting, have many publications to their name, and are also involved in training signed language interpreters. There is no doubt that Deaf sign language users will be involved in carrying out the research at the various institutions involved in the project, but the fact of the matter is that the names on the funding application are all names of hearing people. And this gave me pause for thought, so I did some reading around on this issue.

I came across some publications that have emphasised the notion that to be ethical in sign language research, the research project has to be deaf ‘led’. For example, Paddy Ladd, Sarah Batterbury and Mike Gulliver (Bristol University) in their paper about ‘Sign Language Peoples as Indigenous Minorities’ stress that any research conducted with the Deaf community should be deaf-led (Batterbury, Ladd, & Gulliver, 2007). Moreover, researchers in the United States have discussed the need for ethical approaches to conducting sign language research in order to ensure that there is Deaf involvement and Deaf people’s views are taken into consideration (Harris, Holmes & Mertens, 2009; Hochgesang , Villanueva, Mathur, Lillo-Martin, 2010; Mertens, 2010). So this got me thinking even more.

I used to live and work in Australia and observed that there were very few Deaf people there involved in sign language research. Only a handful of people had PhDs or worked in the university context doing research. Even when I obtained research funding for projects, and was keen to work collaboratively with members of the Deaf community, there were only a small number of Deaf people that showed any interest in being involved. Now that I am here in the UK, I notice that although things are somewhat different—there are many more Deaf researchers—very few of them are responsible for leading or managing research projects. This leads me to ask the question why. Is it because hearing people take over? Or is it because Deaf people are uncertain whether they are ready to take on such a role?

In the future do we need to see more collaboration between deaf-hearing research teams in order to determine how best to manage and proceed with research projects. As researchers, we all have the same goals. We want our research to have an impact on, and be of benefit to, the Deaf community. Likewise, my research on signed language interpreting needs to be of benefit to interpreters. But we need to work together to make sure that happens.

I am interested in discussing why there is a lack of Deaf involvement and Deaf leadership in sign language research. Furthermore, I’d like to consider the role of hearing researchers in this context, especially for those people like myself that have grown up in the Deaf community and have close allegiances to the Deaf community and Deaf sensibilities. Does the hearing status of project leaders depend on the nature of the research? For example, whether the project focuses on sign language, Deaf culture, interpreting or translation? Should lead investigators be allocated according to the topic? Is it more appropriate for Deaf researchers to lead on some research topics, but for hearing researchers to lead on other different areas?

So these are the questions I pose to you this week, and I look forward to some discussion on the issue.

Author: Jemina Napier

27 thoughts on “Sign language research: Deaf-hearing involvement and research ethics

  1. As I come from Australia, I think I am in a position to be able to say that there is very little capacity building happening for Deaf sign language researchers in Australia. I haven’t seen a great deal of effort in encouraging young Deaf people to get research degrees or undertake sign language research. In my own experience, I did not feel it was possible for me to undertake doctoral research in sign language linguistics until I moved to the UK. It’s quite ironic as my own research is concerned with unimodal bilingual Deaf people in Australia (fluent in Australian Sign Language and Australian Irish Sign Language). Something has to change!

  2. Unfortunately, the process for a Deaf person to become a researcher requires a level of education that is not accessible to them, as well as the process to become a researcher within an institution is based on many elements, such as written English for publishing, project management, research know-how, networking and communication. How does this translate to a Deaf person who use BSL? Secondly, are hearing researchers committed to emancipated research practice by giving opportunities for deaf people to function as researchers, and not just as subjects. I worked for the Centre for Community Engagement and now for the Community University Partnership Programme and it is their belief that community engaged research results in more viable outcomes.

  3. Robert, you are only partly right to criticise the situation in Australia: we have had some success stories. I was the supervisor for Donovan Cresdee, a Deaf native signer who successfully completed a PhD in applied linguistics several years ago, and he has worked on a number of research projects since that time, although opportunities have been few. Trevor Johnston at Macquarie University also has worked with Donovan, and has a deaf student, Gabrielle Hodge, who has just submitted her PhD dissertation in Linguistics, with a focus on aspects of Auslan grammar. Gabrielle has worked with me on a project since my return to Australia in 2011, along with a Deaf native signer, Ida Rogers. I have also recently successfully supervised two Deaf students at masters degree level, one from Australia (Lisa Gunter) and the other from Indonesia.

    We do, however, need to work much harder to build capacity amongst Deaf people in Australia – this is certainly true, and without building this capacity, we will not see any Deaf-led sign language research projects in the near future. It must be pointed out that, like the University of Bristol, La Trobe University shut down its Deaf studies centre here this year following a huge drop in student numbers and a long period of inactivity under the previous director. I have since been moved to the Linguistics program, which itself was narrowly escaped closure last year. Our university has just announced plans for future staff cuts due to ongoing financial difficulties, and the new government has threatened to cut funding from the Australian Research Council, so there is much uncertainty here. Despite this, I will continue to apply for funding for PhD scholarships and research projects that can create employment and training opportunities for more Deaf people in the future.

  4. I think there are several contributing factors at play, including those which John Walker has listed. I believe that capacity building is required and that there must be commitment to support Deaf colleagues in project management development.

    Speaking for my own institution, we are committed to supporting Deaf led research and my colleagues have led and co-led several EU funded projects to date. Justisigns will be no different in this respect as my colleague, Teresa Lynch, a Deaf interpreter and former Chairperson of the Irish Deaf Society will co-lead the Trinity College project work.

    I also wonder if Deaf Academics International has worked on this issue? It would also be interesting to see if there is interest in establishing a network of mentoring for those keen to engage in project work. Maybe people have informal networks that they draw on already??? It would be good to see something formalised though…

    At the same time, some of the other things we need to bear in mind include the fact that even in institutions where research is explicitly encouraged, like my own, only 30% of academics are reported as being research active. Increasing teaching loads and administrative burdens make many people reluctant to take on the additional burden that project work brings. I know that several deaf and hearing colleagues internationally have stated that this is the main reason why they don’t engage in international projects…..not to mention the time and energy that many deaf colleagues have to out in to arguing for reasonable accommodations within their institutions. So yes, I think there are systemic barriers that operate.

    Add to this the legal responsibilities attached to the role of PI…. Many academics – deaf and hearing – do not want the burden of the role….. Hence it can be difficult to get people to take on international project management roles, never mind responsibility for an individual institution collaborating as a partner. To my mind, individual institutions should be doing more to support early career academics in developing know how around project application development, financial management and reporting…. I know firsthand how stressful it can be to find yourself responsible for significant financial reporting without a go-to person within the university system and I think that this, along with the reporting mountain, and the issue of time combine to put many people off considering being a PI – hearing and deaf alike.

    And of course, even when you want to do it, you have to secure the funding! As it happens, it took 10 yerars and 4 rounds of application to secure funding for Justisigns…. I first developed a proposal modeled on Mary Brennan and Richard brown’s work back around 2002. The proposal got an A rating from the IRCHSS but no money… They suggested this might make a good EU project. Several instantiations later, we have funding…. But the point is that you need to be tenacious, and you need partners who have the time and energy to work alongside you.

    For me, having someone I could call on to walk me through the specific requirements of an agency helped a lot and I for one am always happy to support others who wish to take on a PI role insofar as I can.

    Finally, I want to emphasize that I fundamentally believe that you should not engage in research about issues affecting communities without Deaf researchers on board.

  5. It’s great to see that this posting has generated some discussion here and also with comments on Facebook and Twitter. I think we all agree that capacity building is crucial, and that deaf and hearing people need to work collaboratively at all times for any projects related to the Deaf community and signed language. All our commentators here have made good points regarding ‘knowing the system’ and how to navigate that system – and whether deaf people have the opportunity to (or want to!) access that information (including publishing, etc.). It certainly emphasises the need for mentoring of early career researchers, and also the need to promote ‘being a researcher’ as a career option for deaf young people. Perhaps we should all team up and do an international roadshow visiting deaf schools to promote this idea?!

  6. “… is it because Deaf people are uncertain whether they are ready to take on such a role?”

    Definitely not! I am Deaf and I recently completed my PhD in the University of Bristol’s School for Policy Studies. I’m ready and raring to get started in my academic career, but I’m currently stymied by the lack of opportunity out there. What causes this lack of opportunity is a very complex issue and bears discussion.

    However, a major cause, as John Walker pointed out, is simple lack of access to the academic field. While I was doing my PhD research, I ended up working alone a lot due to the lack of access to the academic environment caused by communication barriers. My peers were working in large offices around the department, interacting with one another and with more senior academics, passively soaking up the academic atmosphere, picking up on hints and tips of which conferences to go to, what funding was available, which senior academic it was worth getting to know and so on. I was working largely in isolation and missed out on all this chatter and incidental learning. As a result, I don’t even have half of the knowledge of the academic career path that my hearing peers do. In effect, the hearing PhD students are in a position of privilege compared to me, and this privilege continues long after graduation with the inevitable knock-on effects on grant application, becoming PIs, job applications and experience and so on. It’s not at all that we’re “uncertain whether we’re ready”, it’s that for the most part we don’t have the opportunity to find out in the first place!

    If we take this as our starting point, it’s much easier to see why there are so few Deaf researchers out there and why so few of them get the chance to lead research projects. I don’t think it’s lack of ambition or lack of confidence, it’s a simple matter of not starting from a level playing field.

  7. Lorraine Leeson asked if the Deaf Academics Group has worked on the issue. I was party to some discussions, where there is a general feeling of frustration in attaining a position of responsibility in their departments. Terms such as ‘glass ceiling’ and ‘team disunity’ have been expressed at times. The worst situation I have come across is where there were an ‘us and them’ attitude amongst deaf and hearing colleagues in a department or project, which is not healthy and a source of stress for many.

    I think Deaf academics find it difficult to have a dialogue about these relationships. Especially, to openly talk about perceptions of privilege, lack of research autonomy, and opportunities for career development. I think there is an issue of risk associated with these discussions: both are concerned how their position is expressed to the Deaf community or to the university at large, because both parties have greater or lesser membership of one and not the other. Perhaps these discussions are regularly circumnavigated in order to keep the peace; possibly remain a latent conflict.

    On another point, publishing is an issue too. All contributions to one’s piece of written work should cite where their sources come from. Unfortunately, I have found my work in someone’s PhD without properly citing back to me. I don’t see why I have to remind people to follow good practice but it seems I have to do this from time to time. I would like to see a covenant between deaf and hearing researchers that, even though deaf people may be the source of data, deaf researchers’ work, no how big or small, should be cited appropriately.

  8. Dai, I wonder if you talked with your academic supervisor/s about your experiences? I think it is also essential that academics are made aware of the sense of isolation and lack of support that you report.

    It may also be worth saying that some universities run courses for graduate students about preparing to apply for funding/ preparing for publication, and these can be very helpful indeed, not only in terms of the content that is delivered, but in opening up an experienced network to people who you can bounce ideas off. I don’t know if these supports existed in your university – and I know that sometimes even when they are available, it can be difficult to find out about them… but my advice to graduate students is to find out about and use to the maximum the supports that are in place. I know it doesn’t solve all problems, but it may help some people to identify a plan of action re: funding paths/ publication paths more quickly, with better chances of success….

  9. John Walker’s suggestion of a ‘covenant’ is well made – perhaps there is also scope for having some ‘best practice’ guidelines for project team members that could help ensure that the ‘team disunity’ that John also refers to can be mitigated to some degree? (I say this, because I know that this is just the tip of the iceberg and much more needs to be done…. and, I suggest, this starts by supporting deaf students to engage in academic careers….).

  10. The point is that hearing PhD students have acces to those worshops and courses about publishing and applying for grants that I attended as well. In fact, it could be argued they have more access – they hear about different courses on the grapevine that Deaf students might miss out on. They don’t need several weeks notice to book interpreters. They don’t have to worry about whether their DSA (or equivalent funding) will cover such support.

    But more than that (and this is the point I was trying to make) they have unproblematic access to the “networks” that you mention. “Want to meet for a coffee and a chat?”… Well, no, I can’t, my DSA doesn’t cover ‘social’ events like that. A chance meeting in the lunch break? Ditto. Catching the lecturer before s/he disappears to ask questions? Nope, the interperter has to rush off, they have another booking. This is all stuff that hearing academics can do without even thinking about it. We don’t have that freedom or ease of communication.

  11. As a hearing, white male English-speaking researcher, I’m at the top of the privilege pile, but it took me ten years after my PhD to find a permanent position in academia. Partly, this is because of geographic disadvantage (Australia is a long way from where the sign language linguistics action is), but also because of prejudice against sign language researchers (applications for positions in Linguistics programs often failed to result in interviews because of the perception amongst spoken language linguistics colleagues that a sign language linguist was too ‘specialised’ for a general Linguistics program). One of my mistakes was to focus on sessional teaching opportunities during the many years I was a part-time PhD student, and I failed to build up a publication track record, as pointed out by this recent article in The Conversation (https://theconversation.com/predicting-who-will-publish-or-perish-as-career-academics-18473). I have worked with Deaf colleagues on many projects since the 1990s, and (as I’m sure we’re all aware) there are a number of dimensions of disadvantage for Deaf academics. First, of course, is the fact that as a hearing English speaker, I speak the first language of global academia. This provides unparalleled access to information and gives me a huge advantage when publishing work, but also facilitates face-to-face interactions at conferences with colleagues. We encourage sign language use at conferences such as at TISLR, but the difficulty is that hearing researchers don’t tend to share a second sign language as frequently as they share a common spoken language, English, so they tend to speak and not sign when together. If we could agree that, for example, ASL was the target lingua franca (rather than the moving target that is IS), then this would facilitate signed exchanges between hearing researchers at conferences that would improve Deaf access (although I worry that the politics of ASL mean that Deaf academics may be reluctant to accept this proposal – it does, of course, reinforce privilege in some ways, but so does IS which of course is not truly international and for which there are few widely available opportunities and resources for learners). Second, I think that too many organisations in the past have employed Deaf staff, but have not had a career plans in place to support Deaf staff through study pathways to PhD and into postdoctoral research careers. I worked in an organisation in which there was some Deaf-hearing conflict, partly due to the fact that some hearing staff would come and work in the organisation, get their PhDs and then leave, while Deaf staff had limited career progression options. Success in academia is incredibly difficult to achieve, but Deaf people are at such a disadvantage, we need to maximise the support provided, and it is incumbent on employers to build this into the workload of Deaf staff. Third, something that really struck me when I have worked with Deaf colleagues is the expectations from their Deaf communities that they share their expertise and opportunities (perhaps due to the claimed ‘collectivist’ nature of Deaf culture), so that Deaf colleagues were often asked to host visiting Deaf people (for example) which inevitably ate into their work time, as well as to act as activists etc. This was of course combined with expectation from hearing colleagues that Deaf team members are ‘on call’ as sign language teachers, consultants for research design, language models for photographs and video clips etc. I have struggled to make hearing co-workers appreciate the extra demands this places on Deaf colleagues, and how it impacts on their work time.

  12. This is a very interesting topic and one that I have thought about a lot over the past -I don’t know how many- years. However, for reasons of time (this is the first week of our academic year) I am not going to write a long comment, I will just list 3 factors that I think are important in Flanders, Belgium:
    1. Overall, there are little opportunities for sign language research and for sign language researchers in our country. It still is difficult for a sign language researcher to build an academic career and/or secure funding for projects.
    2. Access to tertiary education for deaf students is still a huge problem.
    3. Adam Schembri writes: “First, of course, is the fact that as a hearing English speaker, I speak the first language of global academia. This provides unparalleled access to information and gives me a huge advantage when publishing work, but also facilitates face-to-face interactions at conferences with colleagues.” This is indeed an important issue. I am not a native speaker of English and this makes it harder to publish, network, …. . However, I did have the opportunity to attend English classes specifically designed for speakers of Dutch but there are no specific English classes for VGT (Flemish Sign Language) users.
    There is of course more… As said: interesting topic and I look forward to more contributions.

  13. In my view, Deaf-led research also covers the following:

    (a) that researchers proactively pursue research questions that Deaf communities (e.g. national Deaf associations) have.
    (b) that researchers use Deaf resources and Deaf knowledge extensively. For example, there are already many Deaf lawyers in various Deaf countries (e.g. Belgium, Hungary, Germany etc.). It certainly would be a good idea to have one of then as a primary consultant or even as a co-leader on the board. This way ensures that diverse Deaf views will be covered in every stage of research.
    (c) the working languages also include sign language(s). This way ensures direct communication and visibility of sign language research in Deaf communities as well as involvement of Deaf people in sign language research.
    (d) the appreciation and acknowledgement of diverse roles that Deaf researchers have (in line with Adam)

    I am very glad that the SLLS Ethics Statement for Sign Language Research has been adopted recently: SLLS.eu >> About SLLS >> Ethics

  14. Great discussion! My colleagues, Dr. Gabrielle Jones and Dr. Shilpa Hanumantha (both Deaf PHDs) and I have published an article (in American Sign Language) about Ethical conduct in research involving deaf participants. We report on our focus group study of 3 groups: Deaf college students who have participated in research, Researchers, and Deaf Studies Experts. The focus group discussions are summarized according to key themes in Issue 3, Spring 2012 in the Deaf Studies Digital Journal (http://dsdj.gallaudet.edu). There is also an article in English, still under review at the journal we submitted to, but hopefully published soon!
    –Jenny Singleton (Georgia Institute of Technology)

  15. Some very interesting points here Adam, but I’ll focus on just one – the importance of publishing as a key to furthering your career. This is something I wasn’t really aware of. I was concerned that my lack of teaching experience might hold me back, but you’ve suggested that publishing should be the main focus early on in your career. This is really useful advice and is a perfect example of the kind of information that needs to be passed on to Deaf academics. Supporting Deaf academics early on isn’t just about providing mentors or supported positions, but also making sure that this kind of practical advice is made available, so we’re in a position to help ourselves, not just rely on support from others.

  16. I’d like to contribute to this interesting and very timely discussion.

    I am a Deaf PhD student affiliated to the University of Jyväskylä in Finland (but I mainly work and live in Flanders, Belgium). My research is about the recognition of sign languages.

    I obtained an MSc in Deaf Studies from the University of Bristol, and my thesis there was (among other things) about Deaf academics working in ‘hearing’ institutions. I also partly covered how the systemic barriers they encounter and how being members of a collective community influences their career opportunities (something Adam rightly points out). I found that there are similarities with the role of Black academics working in ‘white’ institutions, and that the specific role of these academics is not always met with understanding by the academic institutions.

    The focus here is sign language research, but the problem of Deaf people being mainly absent from leading roles in academia is situated in every research discipline (it is only more visible in sign language research because of the long-established position of hearing sign language researchers there).

    I agree with the main issues summed up here: lack of access to education for Deaf students, systemic barriers, language issues, … I think we need to make a distinction between the problem of Deaf people not even arriving at the very start of an academic training (mainly caused by issues linked to education and the lack of access to it, something which also needs our attention) and the position of Deaf academics having gone through the educational system, having obtained an MA or PhD and the barriers they encounter. I think for those (like myself) who have gone through mainstream education and have a sufficient (not native) proficiency in written English, the main barrier is indeed like Dai says lack of access to the academic field/networking opportunities/informal chat etc. And just lack of opportunities to ‘spontaneously’ do things like attending a conference, join an interesting seminar or lecture at very short notice, join a workshop about scientific writing etc. All things which are quite self-evident for hearing researchers but which Deaf researchers often not even think about because they know in advance how exhausting the arguing for reasonable accommodations will be. This, combined with issues linked to publishing, seriously hinders the academic career of Deaf researchers.

    I think another problem that didn’t yet came up here is the lack of peers contact for Deaf researchers. This does not in any way mean Deaf researchers are not interested in engaging with hearing researchers and learn from them (we are) but the contact with other Deaf researchers is so important and can be so valuable.. Also, I have myself experienced the importance of a Deaf supervisor, someone who has tackled the same issues and has gone through the same ‘system’ we need to go through. During the last Deaf Academics conference in Lisbon, Peter Hauser (USA) gave a very interesting talk about the different kinds of ‘capital’ Deaf academics needs: linguistic, social, navigational, resistant, aspirational, cultural, … And how we often forget Deaf capital, something which a Deaf supervisor can provide. For this reason it is also crucial that Deaf people can obtain academic degrees and have the opportunity to take on leading roles to be able to function as mentor/supervisor/role model for other Deaf students. It also points to the importance of ‘shared research spaces’ where Deaf researchers can think, work, debate together and exchange with their hearing colleagues. The closure of Deaf Studies centers in the UK and Australia is sadly not helping for this…

    To conclude: someone brought up Deaf Academics international, and whether they have worked on this issue already. I’m not sure but I think not yet. Belgium (Flanders) will host the next Deaf Academics conference (February 2015) and we plan to work on this issue. By discussing about it, by providing workshops on publishing, academic writing, and so on.

  17. Dai, I agree completely. In my own institution, we have been battling against this very issue. While there are policies in place that are supposed to support Deaf academics, the need for advance application for interpreters via a head of department with an outline of why the request for interpreting is linked to their job is, to my mind, discriminatory and disadvantages Deaf colleagues. I have said so repeatedly within my institution and I stand firmly with my Deaf colleagues in working to change this status quo . It is simply not good enough.

    There does seem to be an institutional assumption that when Deaf people come to academic institutions that they are there as students (who have better supports in place as I see it than Deaf academics – for example, we don’t have any full time in-house interpreters in my institution due to funding cuts) and there is a long way to go to right this. It is tiring.

    Someone recently said to me that issue is that we assume we have educated our colleagues/ the general public but in fact, we need to educate and re-educate. Tiring, but true. And I think that it is wrong to place the burden of constantly fighting for access on Deaf colleagues: hearing academics must stand up and be counted too.

  18. Some pretty good communication going on here, great to see! I hope that will long continue.
    I have experienced many of the same restrictions that Deaf academics refer to here, although in some cases I’ve been privileged to have received strong support to enable me to develop. Some thoughts, with some overlapping and repetition to what others have covered already.
    – The power peer reviewers wield is phenomenal. I’m a social scientist, I’ve put in a lot of applications (small and large); how many reviewers are knowledgeable about Deaf communities from a sociological perspective? We have to spend pages on outlining the basics, so we miss some fundamentals of an application requirement, but if we focus on the basics, we are told we aren’t clarifying the fundamentals.

    – Are there any peer reviewers within these pages who could share their experiences so that we can learn?

    – I agree it’s vital to encourage Deaf academics, but we shouldn’t lose sight of the fact that academia is by its very nature restricting, limiting and elitist. No matter how many Deaf people are working within academia, they will still be ultra-privileged in relation to the community.

    – How can academics (Deaf/hearing) therefore restrict the enormous power they wield in regards to the communities they work with? These discussions show excellent Deaf-hearing communication, from which valuable alliances can and should be developed, but it doesn’t hide the fact that we come to the table vastly unequal.

    – Therefore, there is a place for Deaf academic-constructed and led projects. It’s not that Deaf are not ready, there is no united vision. We shouldn’t be too hard on ourselves; we are pretty new after all! But there are mixed messages emerging from these new growths: a Deaf University; Deaf academics retreat into their disciplines and work alongside hearing colleagues; work the system and make changes from positions of power; look for radical new structures; don’t bother altogether; find compromised models of community engagement.

    – Deaf associations are important and relevant because there is a shared interest in ensuring research is relevant to local communities, and legal perspectives are also worthy of input, but I am also concerned about research tending to present the Deaf community as homogenous. It risks missing the ‘hidden voices’ which make the Deaf world so diverse. How can minority people – Deaf People of Colour (particularly women), disabled people, Gay, Lesbian, Bisexual and Transgender people, asylum seekers and immigrants – have a voice unless the necessary spaces are created for a range of perspectives to flourish?

    – What, therefore, is the potential for setting up ethical, and political research ethos similar to the Kaupapa Māori (http://www.rangahau.co.nz/research-idea/27/) – something Dai O’Brien originally brought to my attention – so that there could be a place for community peer-reviewed proposals, appointment of academics by Deaf community-led consortium’s, research proposals built by Deaf communities, Deaf-research ethics, genuine dissemination and reporting back to communities and ‘elders’? The key aim is to bring about a systemic power shift to the community; I wonder how all academics feel about working towards that as a longer term aim, diverting some energy towards this goal?

    – Collaboration, mentoring and capacity building aimed at encouraging Deaf academic careers is really vital; don’t get me wrong; however, while these might strengthen the work academia do with communities, it doesn’t address ways to limit the power we hold in relation to the communities under whose names we work.

    – The awful REF process enslaved academics into straightjackets, breeding competitiveness, jealousy and individualism. If we are working with a group whose ethos are communitarian, a place needs to be found so that these different principles can be harnessed.

    – I read the sense that governments are killing off opportunities with austerity and cuts, but on the other hand funding IS being found. If there is the political will to work together across nations to find funding for the research Jemina mentions here, can the same will be harnessed to forge different kinds of relationships and alliances and develop research from the bottom up?

    – Shifting universities towards profit-making ethos is crying out for alternative models: one example is the group of Social Scientists in Lincoln offering a co-operative model where students are as much part of creating the curriculum as tutors: http://socialsciencecentre.org.uk/about/. Could such a proposal, or a model based on it, work within Deaf studies, especially with serious downsizing going on right now?

    – The wider context is that most research funding goes into medical deafness related research. I fear that not enough is being done to challenge the ethics of the underlying funding imbalance, all the while Deaf-studies related research grows unevenly.

    I do hope this debate continues!

  19. This is very honest comment, one that I hope doesn’t offend…

    Within 6 weeks of starting the MSc at Bristol, I nearly quit. The reason is linked to Jemina’s question. The 2002-2003 masters coincided with a vociferous time in Deaf politics, and one of the ways that this manifested was heavy criticism of hearing researchers for the way that their dominance in the field “disempowered Deaf people by stealing their jobs.” By about mid-November, I’d reached the point where I thought that the best thing I could do to empower the Deaf community was get the hell out.

    I talked to Paddy about it (see also below for where we got to) – and with his help started to pick apart what was pushing and pulling me.

    What was pushing me was anger… Deaf people were angry with hearing people. I was angry with hearing people. I was also angry with Deaf people… I was angry with myself. Lots of anger… grrr…

    Anger wasn’t much fun. It was much more healthy to think about what was pulling me to stay – there was interest, nay, fascination with a reality which I was only just beginning to perceive… and the conviction that I was beginning, albeit fumblingly, to open up something that could be deeply transformative, of Deaf people’s visions of Deaf people, sure… and of hearing people’s visions of Deaf people… but also of hearing people’s visions of themselves.

    And then it really struck me – that one of the reasons I want to be involved in Deaf Studies is that at every level: conceptual, political, practical, systemic, linguistic… it challenges and reconfigures, and reshapes, and remakes who we are, and what we do.

    Can all of that impact be achieved if research in the Deaf community isn’t Deaf led…? No. So it must be. And must be aiming to empower future generations of Deaf people to continue and build, and grow and fight, and learn, and boldly go where… um… (sorry).

    But can the full effect of all of Deaf-related research be achieved if everything Deaf-related is only Deaf led..? No… I don’t think so – at least not currently. Because, the moment that research reaches out, it encounters, and seeks to survive/sustain/grow/thrive in a wider space that is (although unfortunately currently dominated by hearing knowledge) everyone’s.

    Should Deaf people be empowered to navigate knowingly through those (currently) hearing knowledge spaces? Definitely. Should they be enabled to take knowledge from hearing spaces and apply it in Deaf spaces? Definitely. Should Deaf and hearing people be empowered to apply knowledge (in their own ways) from Deaf spaces to transform the hearing world? Definitely. Should hearing people be able to respectfully contribute to the knowledge of the Deaf community? Definitely. Should we be seeking and celebrating a flow of knowledge between those spaces, and looking to explore and examine and interrogate the systems that undergird their separation? Definitely.

    How do we do it…? I don’t know – but I do feel that discussions like this are the start, and that ‘together’ (perhaps under a Covenant – to borrow John’s term) is a good way to move forward.

    It might be of interest, but when I talked to Paddy in 2002/3 – we came up with a more generous definition for ‘Deaf led’… which moved the ‘Deaf’ bit away from a person, to a community… it ran something like this:

    “Deaf led research is research… done from a place that is so Deaf rooted that Deaf people trust the researchers, and know what is going on, and can approve it, shape it, advise it, learn from it, express fears and be reassured about it, build on it, grow from it, and ultimately ‘own’ it as their own.”

  20. Many factors here but I have discussed this with my deaf colleague in Manchester last week. She said that the question should be…why is’t the Deaf academic asked to be the other PI? That will create a track history for the deaf PI and it will make it easier for him/her to move on and develop his/her research skills & funding applications etc.

  21. Dr Jenny Singleton, you and your colleagues are doing amazing work! I am currently doing research that will involve focus group interviews with deaf participants and desperately looking for more information regarding ethical principles around this. Has your article on ”Deaf friendly research. Towards ethical practice involving deaf participants” been published in English yet?

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