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2020: a pandemic year

I will not deny the realities of what a formal exit from the European Union next year could mean. For me Brexit is such a fear-inducing word that my stomach gets knotted very quickly, and hard, whenever it pops up in my head. I’m not interested anymore in repeating what marvellous things the EU has done for us; the only fruit borne so far from that debate is a growing polarisation of views, rather than a consensus. Anyway, 2016 was a long time ago.

So for sanity’s sake, let’s agree that this is how we live now. Our lives haven’t been placed on hold. How could they be, when we’re still alive and breathing? We’ve just changed. I think of COVID-19 as Nature’s way of telling us that what we were doing before was not sustainable.

The face of an exhausted ICU nurse. Source

But end it will. All pandemics do. Let’s not bank on the vaccines eradicating COVID-19 altogether though. They won’t.

While I’m grateful for the enormous investment in their research, development and phased trials, and of course their miraculously fast turnaround, the vaccines are unlikely to make you immune for longer than six months at best. There is still much to learn about COVID-19, and the alarming rise in cases of “long COVID” suggests a far more complicated virus than many of us realise.

We must be patient. I anticipate at least some of us continuing to use masks, hand-washing and social distancing well beyond 2021.

I know some people will struggle to accept that. Change is hard. But if we are to evolve and endure as a species, we have to adapt. COVID-19 won’t go away just because a new year is beginning.

I can perfectly understand the desire for all of this to be over. I myself have had a shit year. After months of caring for my children 24/7 all by myself without a break in the first lockdown – including hoist transfers for my oldest several times a day – and perpetual chasing of negligent social services, I collapsed from exhaustion and had to agree for two kids under 12 to travel in a taxi at night on their own to a colleague with no specialist care training, just so I could visit A&E.

This was me on Facebook Live in May 2020: exhausted, scared, angry and tearful after eight weeks of shielding, and total abandonment by social services. I would continue to shield 24/7 for another two months. Source (in BSL).

Once established that I had no underlying medical conditions, I had no choice but to go back to caring. Ten months on, despite a new social worker, we still have no specialist care package in place, and there is no emergency overnight respite available. I am relieved that at least, since the summer my kids have been able to go back to school and resume regular contact with their father.

Nevertheless, there is a case for hope and positivity. Always. By that I don’t mean suppressing the negativity so the positivity shines through – that’s actually very unhealthy for our inner equilibrium. Rather, we need a balanced perspective, to weigh up the facts and realities that’s happening now with the possibilities of the future.

Only then can we gain clarity on the best actions to take for our protection. All that talk in the media of the horrors threatening to engulf our lives may be a political means of disenfranchising us, which would help explain the burgeoning mental health crisis that’s also being aggravated by the pandemic. Humanity is surely much better than this.

I have been thinking in recent days about Japan in the Edo period of 1603-1868, when it cut itself off from the rest of the world and enjoyed two centuries of “splendid isolation”.

In reality, it wasn’t all that splendid. Like many other countries at that time, Japan had an empire and a strict class hierarchy set by its shōgunate (basically an authoritarian government with the highest political and military powers, making the emperor a mere figurehead of the ruling classes). It was a way of ensuring political and economic stability long before democracy existed, so social mobility would have been unheard of.

But here’s where things get interesting. Peasants were ranked above artisans in this stratified hierarchy because as farmers, they produced the most important commodity: food. As producers of non-essential goods, artisans were deemed less important. Together the two groups comprised the highest of the three-tiered commoner classes, with the merchants taking up the bottom tier. They weren’t in the lowest ranks: those belonged to the underclass, or the “untouchables.”

Nevertheless, these 17th and 18th century artisans are responsible for the elevation of the kosodo, later known as the kimono, into a highly prized work of art with almost no foreign influence. A simpler, more utilitarian version had already been in use for thousands of years before that. But it was in the Edo period that this evolved into an intricately embroidered, unisex garment that told others what social rank you were through motif, style, fabric, technique and colour. Thus over time – along with origami, sushi and the haiku – the kosodo helped establish a home-grown, timeless cultural aesthetic, displaying a level of skill, innovation and craftsmanship that is uniquely Japanese, and was built from nothing.

 19th century wedding kimono, Edo period, Japan. Source

Why do I mention this? As we move into 2021, we are standing on the cusp of forming a new cultural identity. In cutting ties with the EU and no empire to speak of, the four nations of the United Kingdom is at risk of an internal split that could diminish our place in the world. Scottish independence is on the cards, while Northern Ireland faces uncertainty in future relations with Éire (the Republic of Ireland). Less clear is what Wales will do next: they don’t seem to practise as much autonomy.

My main interest is how England will change in light of this. Unlike Scotland or Ireland, the English don’t have a particularly strong national identity. I think we’re too arrogant, having spent forever colonising other countries, forcing our language on them and appropriating their cultures instead of forging our own. As a result – outside of an outstanding arts tradition rooted in Shakespeare – the biggest impression the world seems to have of the English today are football hooligans brandishing St George’s flags and beer bellies; expats turning lobster-red in Spain; quaint cricket villages and tearooms, or titled landowners in tweed suits with obscene wealth and privilege who enjoy bloodsports. Then there’s the many of us, like me, who are just a bit embarrassed to be English.

Cartoon by Neil Bennett

Japan’s “splendid isolation” was a response to the near-constant social unrest and civil war that had plagued them in the previous two centuries. We have not had as much persistent chaos as they did, and we certainly haven’t had a civil war in hundreds of years. In fact, as a member of the European project – starting with the Council of Europe, initiated by Winston Churchill in 1946, and later the EU itself – we’ve enjoyed the longest peacetime across the continent for 70 years. Regardless, the impending “divorce” represents a break with the past, just as joining the EU was.

Of course there will be adversity and hardship. The coming months, years even, are highly likely to be catastrophic given the gross incompetency of the UK government. That’s to be expected. Colossal lack of planning leads to colossal failure. Pulling out of a 450-million strong continental union means losing all the benefits accumulated over the years that entails – and none of the Cabinet has demonstrated skill, foresight or care in developing post-Brexit strategies or contingencies. Basically, we have to start from zero.

However, unlike Edo-era Japan, we have the advantage of a parliamentary democracy, voting rights, and a remarkable track record of direct action by workers, women, disabled people, the Deaf Community, Black people, ethnic minorities, LGBTQ+ groups and people of various faiths that have led to the labour, human and equality rights that we enjoy today. While these are not sacrosanct – right now, they face possible dissolution – they do give us the impetus to know where we stand, and what to keep fighting for.

BLM protestor Patrick Hutchinson, carrying an alleged counter-protestor to safety in the most iconic image of 2020. Photo: Dylan Martinez/Reuters

In 2020 the greatest heroes, for me, were the NHS, teachers, supermarket staff and other key workers who went above and beyond the call of duty in their dedication to serving the public; the Black Lives Matter (BLM) protestors, who boosted awareness of longstanding systemic racism and white privilege amidst pandemic restrictions, and led to the formation of Black Deaf UK; the outstanding Black British talent who capitalised on the BLM movement to showcase themselves – among them Steve McQueen’s Small Axe film anthology, Diversity’s heartrending Britain’s Got Talent dance, and Michaela Coel’s taboo-busting I May Destroy You drama; the Deaf Community – led by Lynn Stewart-Taylor – who spawned the #WhereIsTheInterpreter campaign in protest at the government’s failure to provide BSL interpreters in live COVID-19 briefings. (In a delicious twist none of us could have foretold at the end of 2019, they have now sued the government.)

All of those people surely count as the best of British. I’d love to see them helping to establish a template for a new, more diverse and progressive English culture that better reflects us as a contemporary nation. They are the people who give me hope.

In the meantime, I remain proud to be an European. Happy New Year.

Woman Up! BSL podcast

“It was really difficult to get their attention to explain what my requirements were as a Deaf person. So it meant that I was published but rarely. Because of the barriers I would face again and again. Few people/places were prepared to adapt so I decided to change direction.”

– Me, discussing my life and career on Desperate Artwives‘ latest Woman Up! podcast.

Please note: This episode was conducted in BSL so it is only available on our youtube channel.

#WeShallNotBeRemoved

Call to action – Deaf and disabled artists demand better inclusion in government COVID-19 planning and #endableism in our day of social media action today (17th June 2020). We have as much to offer to the world as everyone else!

However exhausted I am from my 24/7 role as a Deaf parent-carer of two, however excluded I am from BSL-free government briefings – I refuse to be left out of the wider arts discourse. I refuse to be invisible. Watch the clip to find out why. ‬

See my artist statement.

Playaway multidisciplinary art workshops, The PACE Centre

Following our successful Creating music through technology project funded by the Sobell Foundation in partnership with Decibels last month, Eloise Garland and I were invited back to The PACE Centre for more fun last week!

This time round, we were contracted to run six 90-minute sessions as part of Playaway, a non-profit charity which runs a two-week specialist holiday playscheme for disabled school-age children every summer.

Our brief was more flexible. We no longer had an obligation to work with the Subpac vest, and Playaway asked us to use their theme this year, which was Space. The sessions needed to be self-contained, as we were working with a different group every day. We took advantage of this by playing around with the layered structure of the workshops as we went along.

Otherwise, the aim remained the same: to explore emotions, personality traits and moods through music, and then feed the new appreciation into visual art.

Given the theme, Space Oddity was a natural choice for the visual art segment. It was released 50 years ago – in the same year as the first moon landings – and to make it even more special, there was even a cover from a real-life astronaut. It had a pleasant ambience that I believed the children would take to.

Again, I had to show them first how it would be done! In the photo below, I’m actually painting a tiny figure disappearing into the Milky Way while the video is playing.

Because I knew the song quite well, I was able to disperse with the Subpac and properly get into my stride. In other sessions I’ve also painted a lone astronaut floating in space towards the Moon, and a metallic comet hurtling through the sky!

Next, the children discussed imagined characteristics of certain planets with Eloise – Mars, Jupiter, Neptune – and created short, basic compositions with various instruments based on each, led by Eloise on the violin.

Thus primed, the children were able to return to Space Oddity with a newly enlightened perspective and paint more imaginatively and freely while, again, Chris Hadfield did his acoustic guitar riff on the big screen.

The results were astonishing in their variety and confidence! The children clearly showed an aptitude for independent thinking and for owning their feelings.

Sadly, I’m not able to join Eloise in the second week of Playaway due to a prior commitment. I’m certain though that my replacement, illustrator Tim Reedy, is more than capable of generating his own cosmic fun with the children – and I look forward to seeing them all again very soon.

Review: Scored in Silence, Ovalhouse Theatre, 21st July 2019

It’s just her.

Chisato Minamimura in an austere white tulip dress, floating like a ghost in the darkness while she sign-mimes the stories of Deaf survivors of Hiroshima.

Her, acute and precise, neatly echoing the white-on-black linear animations projected on a gauze screen before her. The animations themselves are scenes from 1945 – a barber’s, swaying rice paddy fields, a plane preparing for the big drop, piles of dead bodies.

Sometimes grainy clips of the actual survivors fade in on the screen, retelling their experiences in Japanese sign language with English subtitles.

There is no music. Any sounds are part of the story’s fabric, conveyed via vibrating woojer belts worn by the audience.

Within the theatre’s intimate space – there is no raised platform – audience and performer alike are transported, as one, to the terrifying moment when the first A-bomb was dropped: terrifying only in an enlightened 21st century context, not that of surely the pilots carrying out the deed, or the deaf lives torn asunder by the blast.

There was no television or social media in 1945. Deaf people living in Hiroshima did not have access to radio, the telephone, or word-of-mouth. They did not know or understand what had happened to them, or why they were being treated like a lepers’ colony in love and in work for years afterwards.

In the absence of such knowledge, imagine how intense the trauma of seeing those dead bodies, naked and melted beyond gender, must have been. Adults and children, babies. The utter destruction of all that lay before them, killed by instantaneous, 2000-degree heat.

These stories are only now making themselves known through Scored in Silence, nearly 75 years later. I am incredulous how much power a 50-minute performance can have to educate us, yet here it is.

There can be no better storyteller than Chisato Minamimura, patching stories, nuclear science and news together in a poignant contemporary quilt of one place made infamous by political greed.

The Ovalhouse run being so short – it ran for just three performances – my hope, and belief, is that Scored in Silence secures many more bookings, not just nationwide but globally. The survivors deserve it.

Scored in Silence will be performed at Greenside, Edinburgh as part of the British Council Edinburgh Fringe Festival Showcase on 19th-23rd August 2019.

Creating music through technology at PACE

Over two weeks in May 2019, the deaf musician Eloise Garland and I ran afternoon workshop sessions at the PACE Centre in Aylesbury. They involved primary schoolchildren at Philip Green House, Coventon Road, Aylesbury, and their secondary counterparts at the Bradbury Campus, 156 Wendover Road, Aylesbury.

The workshops were an opportunity to promote Subpac technology in a specialist educational setting, and built on previous collaborative work on a Decibels and Audiovisability Creating Music through Technology R&D project, funded by the Sobell Foundation and Arts Council England (ACE).

This revolved round Laurentia Tan, a medal-winning deaf Para-dressage rider, and her access to music in international competitive dressage – which made Decibels and Audiovisability, a multi-disciplinary creative initiative with music and deaf people at its core, ideal partners.

The Creating Music through Technology project aimed to raise the profile of both Laurentia and Subpac (vibrotactile) technology via film, music, journalism, and visual art made by deaf people. Taking this work to schools like PACE, which is aimed at children with motor disabilities like Laurentia, was therefore a natural next step.

With both sets of children, the workshops took two parts. The first part was a 45-minute school assembly, with a short film of the R&D being shown on a large screen and a briefing of the project. This was followed by a demonstration in which Eloise approached each of the children with the Subpac vest for them to feel – 15 children in the primary school assembly, 10 in the secondary – before I took up the mantle to do a live drawing of a horse with it on, allowing the musical vibrations to influence my mark-making.

The second part was a 30-minute repeat of said demonstration the following week, before the children went back into their group classrooms. Each group – there were three in Primary, and rather fewer in Secondary, allowing more scope for flexibility – had three 20-minute activities each.

The first group discussed the assembly with their conductors (teachers) and LSAs (1:1 learning support assistants); the second group explored feelings in music with Eloise; and the third group, with me, had a go at painting or drawing with the Subpac vest on. (I decided to let them choose their own art materials by way of adapting to their individual disabilities – cerebral palsy is a wide-ranging umbrella term.) When they had finished one 20-minute activity, Eloise, I, and designated staff then swapped places.

The results were very exciting. The children had clearly made mental notes of my live drawing, and created their own movement paintings. Some even managed to evoke the sense of a galloping horse in their abstract marks. You could actually see their confidence growing as they went on – I got the sense they felt empowered by the vibrotactile qualities of the vest. You can see in the below selected images how they responded to my original live drawing (bottom).

I have been an artist and writer for over twenty years, often collaborating with other deaf and disabled artists: most notably as Founder Director of Salon, a grant-funded Deaf contemporary visual arts project that ran for five years. Yet that was the first time I had facilitated, or co-facilitated, an art workshop with disabled children specifically, and as a parent of a disabled child, it meant so much to me: my own daughter is a PACE student. I felt this was crucial to the development of the children’s independent, critical thinking – creativity is after all key to advances in technology, science, and the humanities.

Eloise was very popular in her music activity, getting the children to suggest emotions which she conveyed briefly on her violin. This gave the children much pleasure and incentivised them to ask for more. It didn’t matter whether it preceded or followed the visual art activity – far more important was how their juxtaposition fuelled the children’s imaginations on a multi-dimensional level.

I’m not just saying that! The staff themselves were very moved by the workshops, and I’m pleased to share their thoughts here:

“Very interactive and creative work shown to the children. Allowing the children to explore with different instruments, music, etc.”

“Really interesting and innovative workshop. The music and emotions part was particularly useful for our children who are learning to recognise their own emotions.”

“Innovative, opens the door and gives lots of opportunity for people to live normal lives and access sports and dance.”

“Exceptional piece of equipment presented in an easy to understand way.”

At the time of writing, Eloise and I are preparing to run similar 90-minute workshops at PACE this summer. Although these will be paid by a different charity – and the illustrator Tim Reedy will be replacing me for half the sessions – they are no doubt inspired by the wonderful time we had together, and I am grateful to the Sobell Foundation, Decibels and Audiovisability for helping implement the project.

We need to talk about Deaf people’s mental health. Now.

TRIGGER WARNING: contains descriptions of attempted suicide, suicidal thoughts, and emotional distress.

In April this year, Daniel MJ Webster ended his life. He was Deaf, and in his late 30s.

However, instead of the specialist Deaf-focussed therapy requested by his GP, the local CCG referred Daniel to mainstream counselling with a BSL interpreter. 

As a result, the UK Deaf Community lost a funny and lively young man who was much loved by many, with his family so consumed by grief that they have asked for total privacy. The specialist counselling service, Deaf4Deaf, have launched a JustGiving page for a MH support fund in his memory. They plan to raise £50,000 for six emergency counselling sessions to be offered to 278 Deaf people with severe mental health problems.

While I recognise that six sessions will never be enough, my hope is for the 278 to be recognised by the UK mental health system and gain access to longer-term counselling support administered by BSL-using professionals.

After all, this is happening against an UK-wide backdrop of mental health service cuts continuing for the ninth year under Tory governance, with 83% of schoolteachers reporting deteriorating mental health in children, and two thousand mental health staff a month leaving NHS England last year.

All of which mean double the barriers for Deaf people seeking qualified counselling support. Not only do they experience cuts in those services; they also experience cuts in accessing them. I am hardly surprised that Daniel’s request was rejected by a CCG. 

When the coalition replaced Primary Care Trusts (PCTs) with CCGs in 2013, for the first time in its history the NHS’ commissioning of individual healthcare services became an open market. The PCTs’ code of practice required them to commission public services only, prioritising duty of care. Consequently, they were treated as de facto investments in the public’s health, with the higher cost reflecting quality of service. They funded Deaf-focussed counselling more willingly. 

That changed with the CCGs. Public healthcare providers found themselves competing for bids with private bodies, who didn’t necessarily value duty of care, weren’t as qualified, and sought instead to undercut their public rivals whatever the cost. This is where the likes of Virgin Care muscled in, complaining about the NHS swiping service contracts from under their noses.

Let me show you a real-life experience of how those changes have impacted directly on Deaf users of counselling services: namely, mine. 

I live with depression, anxiety and PTSD. I have made one suicide attempt in Weston-super-Mare, in 1992. I’d got myself very drunk and bagged a lift to the pier at a stupid hour of night, where I intentionally clambered onto the rocks before passing out. Next thing I remember, I was shivering from hypothermia in a foil blanket, still wishing I was dead, while the fluorescent corridor lights of the local A&E sped past from above. 

I have contemplated suicide many more times since: particularly 2011, 2012, 2013, 2014, and last year. I haven’t always been mentally ill, because it’s usually triggered by traumatic life events. I have had two courses of counselling with SignHealth, in 2012 and 2013.

I’ve also had mainstream counselling. After my suicide attempt I was referred to my university’s mental health service, where I met a trainee counsellor who’d just cracked how to keep her emotions in check. Asking her to adapt communication was too much of a stretch. So I quit, and tried working through my depression on medication instead.  

My next course of therapy was provided by MIND, who sweetly tried to match me with a disabled counsellor in 2001 following a messy relationship split, and my father’s cancer diagnosis. 

She was certainly kind, accommodating, and very proficient. But her being disabled and not deaf, and my being deaf and not disabled – I know this sounds weird to some of you (it doesn’t to me and my deaf friends), but bear with me – ensured that I spent most of my time explaining my perspective as a deaf person, rather than addressing the actual issue in hand (however easy she was to talk to). 

Twenty sessions later I declared time up, having found love again. In retrospect I wasn’t emotionally ready to move on, and the counsellor hesitated a little at first. Being so professional though, she understood it wasn’t her place to dictate what I should do.

I also saw two Relate counsellors on two separate occasions in 2011 and 2014, both times with BSL interpreting support. Both proved unsuitable because they lacked Deaf insight, and prattled on instead, thinking they knew better. 

How much I have had to tolerate, and for so long, before I could properly express myself as a Deaf person with mental health issues, is as jaw-dropping a memory today as ever. I am capable of communicating in both oral English and BSL: yet I cannot avoid that being affected when I’m describing emotional trauma – however hard I try to maintain clarity throughout.

In that context a mainstream counsellor, even one relying on a perfectly competent BSL interpreter, would misunderstand their Deaf client far more than is necessary. I’m sure the last thing any qualified mental health professional with integrity would want to do is add more stress.

Yet that is exactly what I’m getting from the UK mental health system today. Despite the advances made by the DDA and its successor the 2010 Equality Act; despite the 1998 Human Rights Act; despite more Deaf people and BSL allies becoming qualified counsellors – I am struggling more to access it than before.

It’s not like I’ve shied away from discussing my problems either. Look: just one person can save a life. I am only here today because one person decided to get some fresh air at five o’clock in the morning in Weston-super-Mare, all those years ago. Just one person. It breaks my heart that no-one was there for Daniel Webster in his hour of need. So if I can save one Deaf person’s life with this blog, then it will have been worth my sharing something so raw and intensely personal. It is the least I can do. 

After a quick succession of traumatic incidents in late 2017, and again in early 2018 triggering flashbacks, I started visiting my GP once a fortnight. They’d log issues as they arose, prescribe antidepressants, and refer me to a psychiatrist (for diagnosis) and SignHealth (for counselling). The last two times I did that – in 2012 and 2013 – I was seeing a Deaf-focussed therapist within a few months. 

This time round, the referral has taken 15 months. BSL Healthy Minds, the counselling service run by SignHealth, assessed me for cognitive behavioural therapy (CBT) and depression only yesterday.

That happened because I wasn’t prepared to be accepted for mainstream counselling with BSL interpreting support, just like Daniel Webster. When I complained to my GP about my referral to them for assessment, my CCG interjected that I had to go down that route first before they could agree to the alternative – just like Daniel’s CCG.

Determined, I raised the issue in an email to the mainstream provider. They wrote to my GP, who wrote to the CCG, who wrote back saying they’d already rejected my request for BSL counselling, in February 2018. My GP then wrote to the mainstream provider, asking them to support my request in writing to the CCG, and posted me a copy of their letter.

Again I emailed, this time addressing both mainstream provider and BSL Healthy Minds, begging them to please make my request a priority. I got my daughter’s social worker to post her own written support – thus triggering a cross-party alliance of social services, GP, mainstream provider and BSL Healthy Minds, all badgering the same CCG to change their blasted minds.

Now, I have to wait another 28 days before I know if I can have 20 sessions with BSL Healthy Minds – even though I have a high score in all three areas assessed: depression, anxiety and suicidal tendencies. And I was diagnosed with PTSD by a psychiatrist in May last year. Tell me, how is this my CCG making my case a priority?

Clearly, my deafness has never been the problem. It is society’s attitude to it that is: the same society that flusters when they realise they have to find another way to communicate with a Deaf person. The same society that aggravates my mental health issues, and those of many others, like Daniel Webster. They know, only too well, that communication is a two-way street.

They have simply chosen not to make it so.

Click here to donate to the Daniel MJ Webster Deaf Mental Health Fund

If you are a Deaf person with mental health problems and you are at crisis point, you can email the Samaritans for 24-hour support on jo@samaritans.org  Otherwise, ask BSL Healthy Minds for a referral to their psychological therapy services on therapies@signhealth.org.uk

You can also self-refer to Deaf4Deaf here.

BSL gallery tours

For the first time since 2015 I have been working a role that I often enjoy: BSL gallery tours that mainly, but not exclusively, focus on fashion and contemporary art.

These tours are aimed at Deaf audiences and last between 45 minutes and a hour, including Q&A and opportunities for audience participation.

So far, in recent months I have had the pleasure of covering Azzedine Alaïa the Couturier at the Design Museum (25th September 2018), Rachel Maclean’s The Lion and the Unicorn at The National Gallery (25th January 2019) – both in London – and Royal Weddings at Windsor Castle (25th May 2019). Feedback has been positive so far, with some attracting new Deaf audiences, and I plan to do more when time and family commitments allow.

Audiovisability: the project that drove my creativity

For three months last year, I was an artist and writer with Audiovisability, supporting their research and development (R&D) project funded by Arts Council England.

The project revolved round deaf Para-dressage rider Laurentia Tan, a multi-medal winner who has been competing in Paralympic and global sports events for ten years – and yet has never won gold. It came about due to her growing frustration over barriers to participating in individual freestyle, the only dressage test set to music.

My role was to shadow her in a variety of ways – online discourse, information-sharing meetings, interviews, flying to Cologne for a weekend – and combine that with my own research and development, eventually writing a report accompanied by my own drawings. The result can be viewed here, with a shorter version on Disability Arts Online here.

Laurentia has cerebral palsy. It was for that reason – among others – that Audiovisability’s creative director, Ruth Montgomery, invited me to take part. I am, after all, a parent to a child with cerebral palsy who has explored that road through my blog and my Kindle book, My Daughter and I, which can still be downloaded from Amazon UK. Besides Laurentia and I had been wanting to meet for years – almost since my daughter Isobel was diagnosed at age one in 2010, just after the sportswoman had entered competitive dressage.

Audiovisability therefore facilitated a precious moment where, Laurentia paid us a personal visit and lent Isobel her latest silver medal, won at the 2018 World Equestrian Games, to wear for a photo opportunity. I can’t overstate how significant this was for my child’s self-confidence, for her younger non-disabled brother to witness this, and how proud I felt that day.

Meanwhile Ruth sought to both bring the R&D to a wider audience through a variety of creative disciplines, with music at its core, and use it as an unique opportunity for the artists to build on existing skills and expertise.

So not only did Laurentia boost her music literacy through a combination of music lessons and collaborative discourse – but as one of the contributing artists, addressing a subject that I knew very little about enabled me to spawn a new writing language; which in turn, also pushed my drawing into a more innovative, almost allegorical style.

Given the almost polarised demands of the two strands – bombarding my mind with structural, grammatical thought for long periods of time (even when taking a coffee break!), and then switching to freeform drawing – it was possibly the most challenging and intensely creative task I’d taken on.

Nevertheless, it provided an invaluable opportunity to drive both forms of creativity to new places, transforming my art and my writing as a whole. This new development will be crucial in realising an ambition that I have of producing illustrated children’s books in future.

I am privileged to have worked alongside such a wonderful bunch like the Audiovisability crew, and I look forward to more collaborative work with them. Indeed we are planning for workshops, funded by Decibels, to take place at the PACE Centre in Aylesbury later this year, which will explore similar dressage music themes with their students.

May I extend deep thanks and appreciation to Ruth Montgomery, fellow musician and producer Eloise Garland, sound designer Chris Bartholomew-Fox, German dressage coach Volker Eudel, film director Louis Neethling and most of all, Laurentia Tan and her mother Jannie, for their kindness, patience and time.

Behind Closed Doors: WOW Exeter 2018 and Deaf abuse survivors

I am taking the train to Exeter St David’s on a beautiful day. The peaceful cumulus straddling the giant expanse of blue outside my window reflects my thoughts: assured of my place of safety and comfort, but not resolutely clear.

Today I’m joining a 2pm panel discussion about domestic abuse, Behind Closed Doors, chaired by Jude Kelly as part of WOW Exeter 2018, and I’m keen to share some of my Deaf survivor experiences.

The risk, in doing so, is inherent. I have PTSD and depression, both of which were triggered by cyberbullying following previous ‘outings’. (You can see my first one here.) I have young children to protect.

I belong to a 156,000-strong, intrinsically expressive Deaf/BSL Community that thrives on open communication and gossip – ensuring a high concentration of British Sign Language (BSL) users who know both me and my ex-partners, especially if they’re Deaf. (I expand on the theme here)

So if I don’t divulge certain details, focussing instead on information that doesn’t ‘date’ the abuse at a specific point in time – you know why.

However, I will not be cowed. My perpetuators know that I am one of very few Deaf women not just prepared to speak out – but able to, because I have the ability to articulate myself well to a mainstream or hearing audience. But you know what? If they try to stop me, they cannot profess to be an ally of the Deaf/BSL Community when they practise what we seek to overcome.

Since beginning my work with fellow Deaf survivors – both in a professional capacity, and more informally – I have come to realise how vital their contribution is to everyday discourse about domestic abuse, and yet how lacking it is. As an artist and writer who values freedom of expression in her work, that speaks most deeply to me.

And there are honestly others who recognise this too. In 2015, I was invited onto a panel discussion at the Women’s Aid annual conference, where I became the only Deaf survivor addressing a packed room directly. Later that year, I gave a 45-minute presentation at the NHS Safeguarding annual conference, in which purple became the token colour.

Again, I was the first Deaf survivor to speak out there. 350 people fell completely silent.

Earlier this year, I collaborated in a workshop with DeafHope survivors as part of Statements in Semaphore, an Arts Council-funded project led by Susan Merrick. (You can read more about the workshop here.)

In two hours, I had become a fan of the survivors. The dignity and composure they showed, as they worked patiently on their effigies, reminded me of our unbroken spirit, and evoked memories of how I felt after completing my own course with DeafHope some years ago.

It also made me very sad. These women were resilient because they had to be – but how many of them could stand up on stage and address a hearing audience? For Deaf women, the usual disincentive to come forward is aggravated by, again, communication barriers.

Visible though the survivors’ art is, it exists only as anonymous messages. Their experiences, and what they do afterwards to ensure their safety, remain hidden.

Within the wider society, our position is vulnerable. 90% of all Deaf and hard-of-hearing people come from hearing families, the majority of whom don’t sign. Having a deaf child doesn’t guarantee increased deaf awareness, ensuring that the communication barriers between child and parent become their own institution.

Being clueless in the matter, if they’re not inquisitive enough, parents will then turn to medical advice to ‘solve’ the problem instead. Some will, unfortunately, start abusing their deaf children as a way of deflecting their guilt – thus setting the tone for future toxic relationships.

For people like that, the very idea of calling out domestic abuse in adulthood becomes an insurmountable challenge. I am very lucky to have had loving parents (communication barriers notwithstanding), and an understanding of what constitutes a healthy relationship – but even I have faced enormous pressures to not come forward.

Sharing my experiences briefly with a compassionate audience at WOWExeter today, I am assured of their support. There are four other people on the panel besides me – chair and WOW founder Jude Kelly; Elizabeth Langley and Karen Atkinson of SPLITZ; and Sasha Nathanson of Stop Abuse For Everyone (SAFE). It’s a lovely panel, with courageous stories of their own to share, and Jude is kind and accommodating. The 45-minute discussion is even-handed, with a few more minutes for audience questions. My PTSD inhibits me a little when I give my background, but I push on nevertheless, and hope the audience gets the message.

However afterwards, when the BSL interpreters are gone and people come up to congratulate me, the barriers remain. I wonder then how I can advance from this?

I am not Dr Christine Blasey Ford. Even within my own community I don’t have an international movement backing me with #IBelieveHer on social media. I do not have the time or the energy, for practical reasons as a single parent and carer of a disabled child, to campaign for better support for Deaf survivors.

I can write and make art, and use both to effect change. I can get others to do the same, collaboratively or otherwise. I can continue representing Deaf survivors at mainstream events. But I cannot do that alone. There needs to be a Deaf collective, not a one-woman band, for real change to take place.

The onus is on you, dear reader, to share this blog as widely as you can. Make sure it reaches Deaf survivors and their allies, and encourage them to join ranks with me. We may not be able to hide the emotion pouring forth from the sign language we use, or even avoid their symbiosis altogether. But if we can be emotional together, the more powerful our message will be.

The cumulus is passing. It is time.

(Edited on 16th October 2018 for clarity.)