nina thomas

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Arts, culture and heritage: are deaf people welcome?

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Nina Thomas

In a recent article published online in Frieze, Chris Sharratt asked whether the art world has a problem with disabled people? It was written in response to a twitter thread by Ciara O’Connor discussing her experience as a wheelchair user at the Olafur Eliasson exhibition at Tate Modern. Over 2,000 people retweeted the thread, with many people telling their own stories and expressing personal frustrations. But the problem of accessibility to culture for deaf and disabled people is not restricted to art galleries; a recent survey conducted by Censuswide found that musuems and heritage sites are still not catering for disabled children and their families.  I wasn’t surprised to read this, as a deaf person I know what it’s like to be excluded from exhibitions and cultural venues due to lack of appropriate access provisions.  I was therefore pleased to see this issue being discussed in the mainstream media and the recognition that the problem was not only a lack of access to the venues themselves but also to events, opportunities and employment within these fields.

People are often surprised (as was I) that many visual arts and culture venues and events are inaccessible to deaf people. Losing my hearing suddenly, the year after graduating with a visual arts degree, I didn’t initially realise the impact it was going to have on me and my career prospects in the field. I had thought I would be able to rely on my other senses and abilities. I was surprised to find many arts and cultural events and exhibitions were now off limits. For example, as an artist I wanted to be able to attend talks and educational events at museums and art galleries. I would email venues in advance to ask if there was any access and was often told there wasn’t.  Sometimes they would say there was definitely a loop system, so I’d book a ticket and arrive early at the venues to ensure they knew I was there (so that the loop was switched on). All too frequently I’d be assured everything was fine, only to find out once I had sat down that it wasn’t and nobody was around to help. I would then find myself stuck in a room full of people all listening and engaged in conversation while I was unable to hear a word. This was a very isolating and upsetting experience. Although it has happened so often, I never get used to it, or find the experience of being excluded any less emotional or difficult. Each time I experience a feeling of bereavement and isolation, making me feel less the person I once was. I have found myself now avoiding venues that don’t advertise themselves as accessible. But this isn’t really a solution to the problem, as it seriously limits options for how I spend my time and what I can engage with. There are many events and venues that I know I would really enjoy and benefit from attending (that I’m aware my hearing peers enjoy) but I have missed out on. I know I am not alone; many deaf and disabled people will tell you the same thing and how it becomes emotionally and physically exhausting to keep pushing for access.

 Many exhibitions in museums and art galleries are also inaccessible to me. It may be an exhibit relies on hearing a sound that isn’t described, it may be a film without subtitles, or encounters with staff who are not deaf aware. Making something accessible need not be expensive. It may simply mean providing captions for a video, or transcripts, or making sure the loop system is working. For example, last year I paid to attend the Tacita Dean exhibition at the Royal Academy but found there was no transcript for her film Antigone.  I sat and watched feeling frustrated I was missing out on such a central work in the exhibition. A transcript would have been a simple solution, and one I have seen work successfully in other venues such as Tate Liverpool. This simple and low-cost adjustment would have made such a difference to my experience at the RA.

image shows one in 6 people have a hearing loss

It’s important to note that when it comes to access there is frequently a misconception that one size fits all. For example, when I email in advance to request access, I am often told about a venue’s BSL provision, but as deafened person for whom English is a first language this isn’t appropriate for me. It’s great BSL talks are now more widely available but more needs to be done to improve access for those with different access needs. Action on Hearing Loss estimate there are eleven million people in the UK who are deaf, deafened or hard of hearing – that’s one in 6 of us. This is set to rise to 15.6 million by 2035 (1 in 5 people). The deaf audience is a significant audience that is often overlooked. Indeed, when venues and programmes describe themselves as ‘accessible’ they often haven’t considered the needs of those with hearing loss at all. An example of this was a peer forum that I applied for and was offered a place on. The opportunity advertised itself as accessible to disabled people, which is why I applied. On my application I clearly stated that I was deaf; I was accepted on to the programme only to be told when I asked about access that it was not going to be accessible to me. I was told that when they had advertised it as accessible for disabled people they had meant they could provide access for those with impairments that affected their mobility (although nowhere was this stated). This opportunity was funded by Arts Council England and National Lottery funding and was a very rare ‘accessible’ opportunity that I had been excited to gain a place on but was off limits to anyone with a hearing loss, not because of talent or ability but lack of access provisions. I was very disappointed. Similarly, I booked a ticket at a major London art gallery for an event which is held regularly, where disabled artists can show their work and receive feedback (another rare ‘accessible’ opportunity for disabled artists). When I asked in advance if the event was accessible to me, I was told there would be a loop system but, when I arrived, I was told there was no loop system in that room. These are just two examples and I could list countless others.

 

image shows a live captioned talk

British Museum event Lost Kingdoms of South America, presented by Dr Jago Cooper. (Live subtitling by Stagetext). Photo credit: Benedict Johnson Photography, 2014

 

I know that not being able to engage in debate, conversation, exhibitions and education at cultural venues has changed how I feel about myself and certainly how I feel about the world around me. It’s closed off opportunities to educate myself and excluded me from new experiences which would have benefited me intellectually and improved my practice as an artist. It’s also increased my sense of isolation, making me feel unwelcome in an environment I once enjoyed spending time in. When I consider my own experience, I’m prompted to ask the following question: How can we expect to develop the next generation of talented and qualified deaf and disabled curators and artists when we fail to make our art galleries, museums and educational programmes accessible to everyone?

Image shows group of people at Sexology tour (an example of a guided tablet tour by Stagetext). Photo credit: Mike Massaro. Wellcome Trust, 2015

Sexology tour (an example of a guided tablet tour by Stagetext). Photo credit: Mike Massaro. Wellcome Trust, 2015

 

I believe that curators and the artists whose work is shown in our cultural venues should reflect the diversity of society around us, however, the lack of deaf and disabled curators in the arts and cultural sector is concerning. As curator for the Wellcome Collection George Vasey explains: ‘Around 20% of working-age adults in the UK are disabled yet, according to recent reports by Arts Council England, only 4% of cultural workers would define themselves as disabled. It gets worse. 1% of people in an artistic position in the visual art sector would define themselves as disabled.’  Unfortunately, it isn’t surprising; disabled artists and curators face so many barriers to opportunities that they often miss out on chances to progress that their peers enjoy. The impact of having more deaf and disabled curators might also be that access is considered when exhibitions and educational programmes are planned and proposals are submitted. As artist and curator Aidan Moesby points out: ‘When I did my MA in curating at the University of Sunderland a couple of years ago, disability was never mentioned within the context of curating unless I brought it up. How, then, do prospective curators begin to change if they’re not having their awareness increased?’

image shows a group of people working with stagtext to make their musuem more accessible

 

When I discovered that Stagetext not only provided captions for theatre but also for talks and museum guided tours it was a life changing experience. I am so grateful to Stagetext for their work in this area, not only as provider of live captioning but also as advocates for improved access for D/deaf, deafened and hard of hearing people. Venues like the Wellcome Collection are fantastic; I can now attend a broad range of exhibitions and talks on subjects from psychology, health, art and science where my access needs are met. To be able to stay engaged with contemporary discussions and debates in this way has been so important to me.  It allows me to feel connected to the world and to a sense of myself as a human being, reinvigorating and inspiring me. I am so grateful for this but more still needs to be done to make arts and culture accessible to all. It would be great to see more cultural venues welcome deaf, deafened and hard of hearing people and improve their access provisions. If venues aren’t sure where to begin, I encourage them to get in touch with Stagetext who are always happy to advise and support them in becoming more accessible. My deafness does not make me less of person, it is a part of who I am, it gives me another perspective on the world, one which often informs my art practice. When appropriate access is in place there is no reason why anyone should miss out on opportunities to enjoy what our wonderful arts and heritage venues have to offer. I truly believe a properly inclusive society benefits everyone.

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Nina Thomas is an artist (www.ninathomas.org). She is also a trustee at Stagetext (an organisation that aims to make theatre and culture accessible to deaf, deafened and hard-of-hearing people) and a founding member of The Film Bunch (their mission is to improve access for d/Deaf and hard-of-hearing people to the film industry). You can also find her on Twitter: @ninathomasart

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Are we mistaking awareness for change?

https://limpingchicken.com/2018/03/28/nina-thomas-are-we-mistaking-awareness-for-change/ 

At the beginning of this month I was at the Tate Exchange with Anahita Harding. We created an interactive installation entitled We interrupt our disappearance, as part of Shape Art’s the Ghosts in The Machine. Our work examined issues to do with absence, presence, deafness, and disability. Anahita and I first met while working together on NDACA (National Disability Arts Collection and Archive) and share an interest in deaf and disabled people’s history and politics. We both believe that there is still so much that still needs to change. The artwork I created was inspired by deaf history and the story of Martha’s Vineyard. In the mid-nineteenth century, Martha’s Vineyard, an island in Massachusetts, had such an incidence of hereditary deafness that in one town on the island (Squibnocket in Chilmark), 1 in 4 people were deaf and, in response, the whole community learned to sign. Nora Groce documents how the community of Chilmark responded to deafness in her book Everyone here spoke sign language: Hereditary deafness on Martha’s Vineyard. Within We interrupt our disappearance I reflected on this research and my own experience of deafness, particularly the isolation.

To explain my own experience of deafness: I was born with no hearing in my right ear, but was able to hear reasonably well, and it was not until I experienced a sudden severe loss in my left ear that I understood the isolation and barriers faced by many deaf people. I attended a mainstream school and so was never offered the chance to learn BSL at school. However, I wonder if I had been taught BSL at an earlier age would my later experience of hearing loss have been quite so isolating and frightening.

St Saviours, Acton

In October last year I volunteered with The History of Place on a film about the history of St Saviours, Deaf Church in Acton. (You can find out more about St Saviours at the V&A exhibition ‘Without Walls: Disability and Innovation in Building Design’, part of a series of events and exhibitions created by The History of Place.) This gave me the opportunity to explore deaf history and to begin to make sense of my own feelings about deafness, in collaboration with other deaf people. During the week’s filming I described the feeling of being in-between two worlds, on the one hand not being part of the ‘Deaf community’ because I don’t sign well enough and, on the other, feeling excluded amongst hearing people because I can’t hear well enough to always follow spoken English. I started to imagine how I might feel about my deafness if everyone used sign language or if as a society we better accommodated the needs of deaf people the way those on Martha’s Vineyard did in the nineteenth-century.

Recently, The Silent Child won the Academy Award for Best Short Film (Live Action), a film about a deaf child isolated from her family and deprived of language and communication until she is introduced to BSL. I saw the film at the BFI as part of an evening d/Deaf films for the London Short Film Festival and was excited to see it getting the recognition it deserved. However, I was also concerned that the euphoria we all felt about the win could distract from the important issues the film had made. People were telling me “this will increase deaf awareness” but, I thought, “what does deaf awareness mean? And how does it help deaf people?” I worry that people mistake awareness for change. The challenges facing d/Deaf people right now are very complex and the changes needed are serious and important. A perfect example of how awareness itself does not equal change was recently demonstrated in parliament the Monday after The Silent Child won, when a campaign to get BSL taught as a GCSE in schools was blocked. This situation is reminiscent of the Milan Conference of 1880, where it was decided that education for the deaf should follow a policy of oralism instead of sign language – a decision made without consulting deaf people, and with a devasting impact on deaf people and deaf culture. Similarly, the recent parliamentary decision prolongs the oppression deaf people have faced over the centuries in their attempts to have their voices heard and valued.

As an adult I can relate to Charlie Swinbourne’s 5 things Oscar-winning The Silent Child shows us about deaf children’s lives, particularly no. 2, in which he describes how seemingly mundane scenes in The Silent Child demonstrate how isolated the central character Libby is, even from her own family. I have experienced similar situations myself with friends and family and it is the most heart-breaking aspect of deafness – the way it cuts you off from those you wish to be close to, as Charlie points out, “simply for lack of language”. When we lose the ability to communicate easily with each other we often become isolated and withdrawn and, as I put it in my recent art project, “we go missing”. I have felt the isolation that deafness can bring, and I believe it’s important to reflect on why deaf people are twice as likely to experience mental health problems than their hearing peers.

In her Oscar acceptance speech, the writer of the film’s screenplay, Rachel Shenton, said that deafness is not life threating. I understand the point she was making, but I still paused for a moment to reflect on those words, considering the mental health statistics for deaf people (because mental health conditions can be life threatening). As deaf people are twice as likely to experience mental health problems compared to their hearing peers, I can’t help but connect this statistic to our common experience of being isolated, overlooked and left out.

During the House of Commons debate, MP Liz Twist criticised the government for not taking seriously the importance of BSL. When described as simply a “useful tool,” she responded: “It is not just a useful tool; it is an essential part of communicating with the outside world and other people. It is an essential tool for many of our young people, and we should respect that.” Whenever access to everyday, taken-for-granted areas of life are denied to us, I and many other deaf and disabled people feel disrespected, over-looked and undervalued. We are not given the opportunity to achieve our full potential simply because of lack of language and lack of access provisions. I wrote about The Milan Conference in a blog for The History of Place here. I am shocked how little has changed since then. Hearing people are still making life-changing decisions for deaf people with little regard for their emotional, intellectual, or mental well-being, also without respecting their knowledge and experience; it seems that they feel they know what is best for others. Furthermore, not enough thought is given to the benefits to wider society when everyone is able to communicate and reach their potential.

Postcard of Martha’s Vineyard

I intend to develop my own research into Martha’s Vineyard further, creating more artworks that explore the fascinating social history of the island and its relevance today. I am also excited to read that a sequel to The Silent Child is planned, which will continue the work they have started. I believe we must keep going, keep raising awareness and most importantly keep pushing for change. History teaches us that mistakes made can have devastating consequences. We must learn from our mistakes. History can also teach us what is possible when we come together and exercise the power we have to change the world we live in – so that we all may flourish.

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Deafness and mental health

Check out my blog for on deafness and mental health http://www.mycareacademy.org/all/guest-blogger/deafness-and-mental-health/

A performance of 4:48 Psychosis, a play written by the playwright Sarah Kane was recently produced by Deafintely Theatre. The play is a powerful, critical and often unsettling exploration of experiences of mental illness and treatment. Deaf people are twice as likely to experience mental illness compared to their hearing peers, so there is a clear need to begin a conversation about the relationship between deafness, mental health and mental health provisions. Deafintely’s interpretation of 4:48 Psychosis movingly captured the experience of mental illness from a deaf perspective and the communication barriers that exist between many health professionals and deaf people. What happens when the places we go for help and support are isolating and inaccessible?

According to a report by SignHealth ‘19% of deaf people had missed more than five NHS appointments because of communication problems.’ (Deaf people and suicide, 2007). It’s vital then that health provisions for deaf people are made more accessible and welcoming, allowing for meaningful communication and understanding, so that deaf people receive appropriate treatment and early intervention should it be needed.

Evidence suggests that deaf children born to hearing parents are more likely to experience depression than deaf children with deaf parents, why is this? Perhaps the difference may be explained by the lack of early exposure to sign language and the absence of other deaf people in the child’s life, people with whom they may identify and share experiences. Yet 90% of deaf children are born deaf to hearing parents who may not know another deaf person or sign language, but with the correct support in place, these children can thrive. It’s my belief that medical aids such as hearing aids and cochlear implants should be offered in combination with other support such as British Sign Language (BSL) training and quality appropriate access provisions. Lack of support for deaf children in school is another significant issue leading to low academic achievement, isolation and poor self-esteem. Yet 70% of deaf children in the UK attend mainstream schools with no specialist provision. All these factors need to be considered when we look for answers.

I recently realised that I define my life in two separate parts: before I lost my hearing and after I lost my hearing. It’s a significant definition because before I lost my hearing I could easily go to the cinema, listen to music, go to clubs, chat with a group of friends, watch TV without subtitles, follow a conversation with my family and friends over a meal, catch jokes – all these everyday things that we take for granted and which make us feel connected to one another and the world around us. Since losing such moments my experience of the world has completely changed and navigating a life post-hearing loss has been challenging and often very isolating.

 

In Bella Bathurst’s ‘Sound’, a story of her hearing loss journey she explores the experience of becoming deafened. Bathurst speaks to Dr Austen, Consultant Clinical Psychologist at the National Deaf Mental Health Service Unit in Birmingham, who explains:

‘If you’ve got a spinal injury – and I did work briefly in Stoke Mandeville – you have a very powerful experience with a group of people who are all in the same hospital for a long time. So, by the time you come out of there, you know what others are experiencing, you’ve got an identity, you’ve got a shared community. But with people losing their hearing, they go away and attempt to hide’.

My experience as a deafened person is different to that of someone born deaf and for whom BSL may be their first language, or for those who are fluent BSL users and are part of the Deaf Community. Deafened people are often diagnosed and sent away with very little support and without access to a community. There is great value in being part of a community of people with shared experiences and who face similar challenges. I was living in Derby when I experienced a sudden hearing loss; I was diagnosed and simply sent away with an appointment to come back for a hearing aid a month later. I was given no further help, advice or direction on how to navigate life as a deaf person. I knew there was a deaf community in Derby, but I didn’t know BSL and hadn’t met any deaf people, nor did I really know how to. I did discover lip-reading classes, a very welcoming group but found they were all significantly older than me. It was only several years later when I moved to London and became involved with The Film Bunch that I first met other people my age that were facing similar challenges. The experience that most helped in those years between came in the form of a Channel Four comedy called ‘Cast Offs’, in which Sophie Woolley played Gabby, a deaf mum to be. It was the first time I had seen a young deaf person on screen who captured something of what I was experiencing. In an interview at the time Sophie talked about social situations with hearing people:

“It annoys me when they leave me out of conversations and tell me I wouldn’t want to know what they are talking about anyway. Sometimes they’re right, and that’s even more annoying after I’ve insisted on being let in on the joke and it indeed turns out to be rubbish. Why bother speaking if it’s just drivel? People should try harder to be witty and try harder to communicate that wit to me”

I found this very funny and could relate to the situation. I shared the interview with many of my friends at the time (all hearing) and it allowed me to communicate to them something of what it was like to be deaf in a hearing world. This is one reason why I feel strongly about the need for better representation of deaf and disabled people. My experience of sudden hearing loss was incredibly isolating and lonely, but Sophie’s work helped significantly. I admire her ability to treat deaf experience seriously through comedy. Laughter, particularly shared laughter makes us all feel less alone and it is one way in which we can deal with life’s inevitable challenges.

Recently well-known hearing representatives have advocated on behalf of deaf people. I understand the desire to do this, however, I am concerned when it comes at the expense of deaf representatives because those with lived experience of deafness are best placed to understand what it means to be deaf (in its many forms). Moreover, when hearing representatives take the place of a deaf person, they often silence the voice of those with whom other deaf people could identify. Allowing deaf people to speak for themselves and supporting them to work in high-profile roles is the best way to challenge the notion that deafness is something that should hold anyone back.

It’s important we learn from the mistakes of the past and give deaf people the same opportunity to thrive and achieve as their hearing peers.

The frustrations deaf people have historically experienced living in a hearing world are brilliantly articulated in the Raymond Antrobus poem ‘Dear Hearing World’, which includes the line, ‘You erased what could have always been poetry’. I have previously written about some of the issues this poem touches upon in a blog for History of Place here. Lack of access provisions to even the most basic services, lack of opportunities, language deprivation and difficulties accessing education have had a damaging impact on the lives of many deaf people, stifling their potential and undermining their self-confidence. The reasons a person might experience mental illness are complex, but we do know that experiences of isolation are significant. It’s important we learn from the mistakes of the past and give deaf people the same opportunity to thrive and achieve as their hearing peers.

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Oralism and The Royal School for the Deaf, Margate

Oralism & The Royal School for the Deaf, Margate

 

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Accessing Art

After her recent trip to the Southbank Centre’s Unlimited festival, Nina Thomas shares her thoughts on access barriers to arts education:

https://weareunlimited.org.uk/nina-thomas-accessing-art/ 

I recently had the pleasure of attending the Unlimited events held at the South Bank Centre – a great few days of talks, workshops and exhibitions. I went away feeling engaged, inspired and uplifted.

Hearing loss can be both exhausting and isolating, but what struck me most about the events was that I was able to access quality information and engage freely without feeling drained or having to try hard to fit in. I laughed so much too. It was particularly fantastic being able to be to laugh having understood what had been said and why it was so funny; an experience I rarely have these days, but one of life’s simple pleasures.

I hadn’t developed super powers and my hearing had not magically been restored. Instead the barriers to access had been removed; I could get on with enjoying myself and learning new things. Wouldn’t it be great if all events were like this?

I have always been completely deaf in my right ear, but I grew up being able to hear reasonably well and attended mainstream school – so I did not learn BSL. It was not until a year after graduating that I experienced a significant sudden hearing loss, and the isolation and frustrations that come with that (which many others also face). The experience of once being able to access cultural events with ease was lost too. The frustration was felt not just by myself, but also my family and friends. Trips to the cinema became off limits, unless films were subtitled (not widely offered). I was living in Derby at the time and despite being told that the area had a high population of deaf and hard of hearing people, it was surprising how many cultural events were no longer accessible for me. I was comforted by the fact I had chosen to pursue my studies in the field of the visual arts – surely allowing me to rely more on my other senses and abilities. But what I hadn’t realised was how difficult I would find it to keep accessing the arts and particularly arts education.

When I moved to London I naively thought that it would all be easier. Instead I have been surprised how difficult it has been for me to access art education and events here. For example, I recently wanted to attend a paid talk at a major London gallery, so I emailed in advance to see if it was accessible and I was assured it would be. On the basis of past experience I turned up to the event early to check that the loop was working and was told it was. But when I sat down to enjoy the talk I found the system was not on. I tried to attract the attention of the staff, signalling the loop was not working, but I received no help. I sat there unable to hear a word for over an hour and a half. Imagine sitting in a room not understanding anything that is going on. I was obviously annoyed and upset and so I later emailed to explain my experience. I was issued a refund, but the organisation refused to acknowledge there was a problem with the loop system or their services. I use this technology on a daily basis and have a good understanding of how it works now, and I knew my hearing aid was not at fault. I offered some suggestions for improving access, including providing live captioning. I also offered to test the loop system so that it would work next time for others who might also want to attend talks. I got very little response and, given the size and reputation of the gallery, I was surprised by their lack of interest in improving access. This is one example – I could list many other events like this, and other organisations where I have had similar experiences. Surprisingly it’s often the smaller – and less well funded organisations – that can best accommodate my needs and who are most grateful for feedback on how to improve access. The larger arts organisations that claim to be the most accessible are often the least accessible to me, and the least willing to improve services and access.

I feel very strongly about the need to improve access across the board, so that everyone has the chance to learn, develop and engage with what’s on offer. I praise the work of Unlimited, Shape and many others for the great events they offer, but ask the question: why aren’t all events like these? Why is it so unusual? There is no excuse for arts organisations not to be accessible, and I am tired of the excuses given. I wish more organisations would respond to feedback and put measures in place to ensure that I and others can enjoy their programmes of events without such a struggle.

I often imagine what it might be like if my hearing were restored and life returned to the ease with which I experienced the world previously; that I could access events, education and the arts without thinking about my access needs; without having to check if I will be welcome. However, I am starting to imagine what it might be like if instead my environment could change, so that the places I wished to visit were truly accessible. The fantasy London art galleries and educational events that I imagined when I lived in Derby – places where all are welcome – is now increasingly possible, thanks to technology. There are now so many innovative and exciting, not to mention creative ways to make events accessible to all. And in a properly inclusive society it shouldn’t just be deaf and disabled people pushing for such changes.

 

 

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