Storm Babet and major technological problems nearly did it for the conference I went to recently, an event that had already been derailed by a train strike. Yet I came away from this National Association of Deafened People (NADP) event inspired by the things I heard and warm from the conversations I had. I knew no-one but felt as if I was among friends. It was my first time in room full of people with hearing loss and here was a tribe I belonged to.
The conference theme was ‘filling the gaps’, and we came at this from many angles, looking at how tech companies, researchers, advocates and support groups are working to make things better for and with people with hearing loss.
Google innovations
Christopher Patnoe from Google spoke of a time, perhaps not too far off, when we’ll be able to wear glasses that turn speech into text before our very eyes. How incredible that will be! He told us that Google Buds have a new hearing wellness feature and talked about Google’s efforts to make its products accessible to people with hearing loss and other disabilities as part of the design process, not as an afterthought. The Google approach to inclusive design is based on four principles – 1) leverage your strengths (such as using AI) 2) nothing about us without us – work with people who will use the technology 3) start with one – person, feature, or product 4) progress, not perfection.
I’m excited about how technology is evolving to help those of us with hearing loss, and I wonder what opportunities there are for getting involved as a deaf user to shape new products and services. Maybe there will be something at Google’s Accessibility Design Centre in London, where people with disabilities are involved in co-designing accessible technologies. If you know of ways to get involved in shaping products and services for people with hearing loss, please let me know!
Before there were textphones…
Necessity is the mother of invention of course, and Andrea Saks took us back some decades to when her father Andrew Saks, with two deaf friends – Robert Weitbrecht and James C. Marsters, created deaf telecommunications using surplus teletypewriters and modems, paving the way for textphones and real-time text messaging across the world. Andrea took up the baton in her work as an international telecommunications specialist for the deaf, promoting access to telecommunications and information and communication technologies.
Bringing us bang up to date, Zoe Moore and Simon Pearse gave us a glimpse of the work behind live (and other) captioning and making TV and Video on Demand accessible. It’s easy to feel frustrated when captions are not perfectly synced, have errors (though I enjoy the funny ones) or are unavailable, but I now have a bit more understanding of the challenges and an appreciation of the work going on to improve accessibility.
A world made for hearing wellness
It was inspiring to hear from Marion Marincat, a man on a mission whose loss of hearing in his twenties set him off down a path driven by his vision of a world where everyone can hear clearly. Marion and his team at Mumbli certify venues for sound based on quality of conversation and noise levels, have developed a kite mark for safe listening environments, and are working with businesses on promoting hearing wellness. They launched their first hearing wellness festival in London last year and created the first hearing wellness district, with big plans for expansion. I’m looking forward to seeing what Marion and his team will achieve.
Advocating for access to cochlear implants (CIs)
Learning from Sue Archbold about the CI International Community of Action (CIICA) sent me straight to their website, on my return home. They are doing such important work to advocate for better access to cochlear implants globally, and for lifelong support for CI users. Despite being aware of the problem of health inequalities in general, I was shocked to learn about the variation in support available after implantation, as well as the low proportion of severely deaf people who have a CI, even in high income countries. It’s free to join the CIICA community and I’ve signed up, to find out more about their work and opportunities to get involved.
Lipspeaking – in the courtroom and beyond
Change is also happening here in the UK for people with hearing loss called up for jury service, as lipspeaker Kate Bohdanowicz and deaf artist Tim Reedy explained. When Tim was called for jury service, he was barred from doing so, as they would not allow a lipspeaker in the deliberation room. In September 2022, the law changed to allow an interpreter as a 13th person in that room – but only a BSL interpreter! Since then, a judge has overruled this and allowed a lipspeaker to support a deaf juror for the first time. Let’s hope this paves the way for all deaf and hard-of-hearing people to do jury service if called upon. Lipspeakers can offer support in many situations, and you can find out more at the Association of Lipspeakers (ALS).
Filling gaps in knowledge
Provision of cochlear implants (CIs) depends on many things, but one important piece of the jigsaw is having evidence from robust research on which groups of people – in terms of their hearing loss – are likely to benefit. A randomised trial (the COACH trial) is under way to compare CIs with hearing aids for people just outside the current UK criteria for having a CI. Researcher Catherine Killan explained a bit about the trial and encouraged people to spread the word to anyone who might be interested to find out more from the COACH trial website. The trial is recruiting people to take part right now, in nine centres across the country.
I had an opportunity to mention another important piece of research which aims to work out the priorities for research for people with both a hearing condition and dementia. The opinions of health professionals working with people with these conditions, of the people themselves and their loved ones, play a key part in helping researchers establish these priorities, which will then influence the research agenda. Part of this work is done through public surveys. The first launched on 13 November and will stay open for 3 months. By completing the survey(s) you can have your say on the connection between dementia and hearing to guide future research. You can read more in the blog Dementia and hearing conditions: what do we most need to know? and follow the project on their webpage, Facebook page Coexisting Dementia and Hearing Conditions PSP or on X (formerly Twitter) @DementiaHearPSP.
Good things are happening in Kent!
I felt that Kent must be a good county in which to be someone with hearing loss, after listening to Julia Cox and Helen Simpson talk about their work there! Julia runs a monthly group as one of Hi Kent’s range of support services for the D/deaf, which range from the loan of assistive devices (to try before buying, for instance, or to use at an event), courses, social activities, help and advice. I do hope similar things exist elsewhere. Something that really struck me when I became a CI candidate was how much support was available, compared to my experience as a hearing aid user.
Kent-based Helen Simpson knows that she is teaching her primary school pupils a great deal besides French as they learn to communicate well with Helen as someone with hearing loss. Helen is also a lipreading teacher and gives talks about hearing loss management, lipreading and deaf awareness. Congratulations to Helen, who received the Heather Jackson award, and to runners up Julia Cox, Margaret Cheetham and Emmanuelle Blondiaux-Ding. The award is presented to a deafened person who has made a significant contribution to the improvement of the welfare or opportunity of deafened people. You can read more here about the work done by Helen, Julia, Margaret and Emmanuelle.
Get writing!
I was very honoured to also be given an award – the Gifford Hardy trophy, for the best article in the NADP’s magazine Network in the preceding year. Gifford Hardy was a much-loved member of the NADP and a frequent contributor to the magazine, and it was lovely to meet his daughter Janine, who presented the award. Thank you to Janine and the judges. Now for a call to action – do consider writing for Network! It’s great to read about other people’s experiences.
Time for action
Lidia Best, NADP’s Chair, stressed that when we advocate for ourselves we advocate for others with hearing loss, and it feels good to be reminded that each of us, even in small ways, is doing something to improve the lives of other deaf people. I left the conference inspired to find out more about opportunities to make a difference, about technologies that might help me, and to keep writing. I loved talking to others there, which reminded me of the value of sharing experiences and prompted me to look into becoming a mentor for CI recipients. With my job coming to an end in March 2024, I’m also going to keep an eye out for suitable posts with a charity working with and for the deaf – I just might be lucky! I want more people to hear about the NADP – and to join the ranks. I only learned about this charity quite recently, and I felt sorry that there weren’t more people there to hear about the brilliant work that’s happening in so many quarters. So, if you aren’t a member, do think about joining us – and maybe I’ll see you next year!
From Ear to Eternity: a cochlear implant diary 