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.

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.)

Convalescing.

Today marks just over six weeks to the day I left hospital, and the contrast in energy levels is interesting.

In isolation, I didn’t have much to see or do. My hospital room had no windows, no art on its walls; flowers were banned. 

Plain seclusion shut me off from the everyday pressures of paying the rent, the bills, paperwork, housework, and putting away toys – leaving me to pursue the simple pleasures of reading, writing, looking, or sleeping.

It’s crucial to note how encompassing my weakness was. It’s made me realize just how much energy we use up each day, how much others can demand from us – how easily we set ourselves up for a fall.

Resting in hospital, I was able to gain enough energy to near-resemble my old self in conversation with family and friends. Virtually the only noticeable physical weakness was in mobility, once I put feet to floor and started pacing round (initially after mammoth grunty efforts to sit up on the bed, of course).

On Day 3, any steps I managed were the length of my littlest toe; by Day 5, the strides were bigger, but pacing once or twice round the bed nevertheless sent me to sleep. I thought only this kind of exercise needed to be offset with ample rest. So I closed my eyes lots, read lots, wrote lots.

Over the course of my eight days in hospital my energy did grow, to the extent that upon discharge I could dress myself, pack my bag, and walk – just – out of the ward.

Once home however, the focus of my energy shifted. Having had to use a wheelchair to get to my mother’s car, I needed her as a crutch to get me to the front door.

img_1800Incredulously, I watched my feet move as if on a Zimmer frame, while mentally racing ahead with the usual zip of a parent in her 40s. Forcing my mother, 25 years older than me, to slow her pace in line with mine felt genuinely weird without an option.

I soon discovered how quickly emotion – any kind of emotion – also depleted my energy. Anger, upset, excitement, desolation, frustration, joy: all these required raw energy to form the appropriate facial expression and body language – something that asked far too much of me in my delicate state.

My countenance was already a little pinched and pale from the loss of appetite when I got ill. (I’d say I lost half a stone – no big deal, but being already slim, it showed in my face and wrinkled jeggings.) I now had to have my own death mask to match; I could barely move my lips without getting tired.

At least, on the few occasions when I was required (and able) to do so, it made my signing a lot clearer.

Zoning out at moments of potential stress became a regular practice. I distanced myself from certain individuals who basically asked for high drama, intentionally or otherwise. When in my first week out of hospital my son dropped to the floor with a tantrum, I sat motionless and in equitable silence until he had finished. I am thankful that he no longer pounces on my bed at a ridiculous hour.

In the early days of my convalescence I made the most of watching the trees sway from the French doors in my sitting room until I got a little colour separation. 

When ex-hurricane Ophelia swept past without affecting my region, I had time to watch a neon orange sun above the evergreens cast an Instagram-filter glow on the afternoon, with rays of the same unearthly colour superimposed on my sitting room floor. I couldn’t stand for long; could barely hang the washing out or load the dishwasher without getting woozy.

Instead, I took to drawing, knitting (in five days I made four-fifths of a enormous and completely improvised jumper), and reading – the obvious benefits of which externalized superfluous pressure, and could be done from my bed.

IMG_1855

If I over-exerted myself, once I sat down, I couldn’t get up again or reach for my mobile. Glaring at it didn’t help: both it, and the surface it lay on, seemed to dolly away beyond arm’s length, like James Stewart staring down the belfry in Vertigo.

For school pick-ups, I leant heavily on parents whose children were classmates with my son to take him home for a few hours, while my social worker booked carers two hours every day for a fortnight.

Getting the children up in the early mornings was the worst. My mother had to drive 20 minutes to mine at 7.30am daily so to assist in my daughter’s hoist transfers and walk both children to school for a while. I had people cooking and freezing meals for me. Making even a basic omelette wiped me out.

As soon as I was able, I started venturing outside my front door, inching further each time. On my first attempt, I got to as far as three doors down before sensing the need to turn back – and reached my front door handle just as my legs almost gave way.

On another occasion, a neighbour in long shirt-whites came to my aid when he caught me nuzzling a hedge on a different corner. I was fine; just a bit embarrassed. Cognitive Melissa didn’t quite have the patience for the traumatised physical being on the street who insisted on slowing down like someone twice her age.

fullsizeoutput_3f7

 In succeeding weeks I have, of course, progressed through taxis to quiet shops for midweek essentials to Saturday dips into the shopping centre. I even achieved a short accompanied trip to London for some theatre and a budget spa treatment, although sometimes I still cannot bear how oncoming crowds and multiple steps alter my peripheral vision: a psychological effect of my dehabilitated balance.

An more unexpected after-effect of my illness is the incapability to book dates. If someone says they’ll pop round tomorrow noon, I’m clear. But if they send a wordy text giving me a choice of Thursday or Saturday or they could give both days a miss and come in for twice the time the following Monday would that help? – my mind just fogs over.

Likewise, date listings extending beyond the first, or even the second, week turns into meaningless words and numbers. I can only log one day at a time. It reflects my own efforts to gain fortitude, step by toe’s length step.

I often think of John Lydon, formerly Johnny Rotten of the Sex Pistols, recounting his meningitis experiences at the age of seven in a 2014 autobiography. Of course, his was a particularly traumatic illness that robbed him of his memory for four years and left him with a permanent spinal curvature. But on a much lighter scale, I get the mental struggle to process vital information.

fullsizeoutput_3f4.jpeg

In one interview, Lydon speaks of the value he now places on retaining memories, and the shock he experienced when his hospital stay ended after a year and he found himself in an unfamiliar environment under the care of two adults he couldn’t remember meeting. (That environment was his home, and the two adults his parents.) Somehow he’d grown a sense of belonging in the hospital; in his amnesia, he thought that was home.

Now that I have had bacterial meningitis a second time (albeit my first as a fully-grown adult), I understand why Lydon has become the straight-talking anarchist we know and love. Because I don’t have time for bullshit either. I must keep my life simple, if I am to recuperate properly. If someone gets difficult, I’ll zone out. If I get stressed, I’ll say so (and I have certainly found being open about my illness helpful).

Most importantly of all, I must make time for me, the passing clouds, the smell of the dewy grass that I lie in on a sunny day, my knitting, my drawing, my books, and (when I can manage it) my writing. Because they are what complete me and my convalescence, and my children deserve it.

8th March is International Women’s Day. Here’s why I stand up for male survivors of domestic abuse

IMG_5433Image courtesy of source

On a day dedicated to celebrating the achievements of women everywhere, for me to be writing about male victims of domestic abuse instead may sound odd. Some may not understand how that correlates with feminism. As always, the movement has a knack of highlighting inequalities you never knew existed, and I’d like this blog to be one example.

As a feminist, I don’t seek to oppress men, but to eliminate the oppression of women. I may be stating the obvious. But in light of the misogyny that has grown exponentially in recent months in the run-up to – and following – the election of the present Republican administration, it’s also unfortunately become necessary.

Likewise, actress Emma Watson was ‘quietly stunned’ by the backlash to a cover that she posed nearly topless in and shared earlier this week. Her response was to counter with, ‘Feminism is about giving women choice…It’s not a stick with which to beat women with. It’s about freedom, it’s about liberation, it’s about equality.’

That speaks directly to me. Not just because I’m a binary female, but also because I believe that in liberating women, feminism also liberates men.

How so? Fundamentally it boils down to embracing your feminine side, that bit that so terrifies men and women get picked on for espousing. ‘You run like a girl.’ ‘You dress like a woman.’ ‘Leave the touchy-feely stuff to the ladies.’

The irony of such vilification is how it reflects men’s insecurities about themselves, rather than the perceived weaknesses of the people they mock. Even they know that femininity and masculinity is inherent in all of us, to varying degrees; like yin and yang, you can’t have one without the other. Masculinity isn’t some fragile male construct that’s going to vaporise like Boss cologne when your female colleagues start punching above their weight on a regular basis.

Rather, it exists as an opportunity for men to get in touch with their ‘feminine side’ – their emotions – and try to reach some sort of inner equilibrium that way.

By that I don’t mean indulging in froufrou blouses and high heels if that’s not what you want to do. Rather, it’s a matter of taking a long, hard look at yourself and identifying what it is about you that embarrasses other men. Have you ever been picked on for showing respect towards women, or the way you run? Do you harbour a secret predilection for pink shirts? Do you have pigeon toes? If you say ‘yes’ to all of those and follow that up with ‘…and I don’t even care’, then kudos to you.

Otherwise, trivial though these questions are, they’re a way of flagging up society’s expectations of you as a man, and how these impact on your own behaviour. That women wrestle with unrealistic and often contradictory expectations every day is well-documented. But expectations of men are also unrealistic, and that’s why patterns of abusive behaviour and shame prevail more among them.

Statistics for male victims of domestic violence are hazy, but that is not unique to them. Female victims suffer in silence too. Unfortunately we have no way of knowing how many men, and how many women, are prevented from reporting intimate partner abuse due to oppression, stigma and prejudice. To put it bluntly, you can’t record silence.

However, reported statistics show that the vast majority of perpetrators are male. More men are responsible for the abuse of other men and women – and children – than women. Much of the scarce press coverage surrounding male survivors feeds off the misogynistic belief that a man wouldn’t even allow himself to get in the kind of situation that a woman would.

So prevalent is this attitude, that it even affects how the press frames domestic abuse of LGBTQ people. ‘Well, if they’re less than men’, crow the bigots, ‘it would happen to them, wouldn’t it?’

Yet the oft-touted statistic that domestic abuse affects one in four women and one in six men is not straightforward. Refuge’s own statistics reveal that a significant majority of men reporting abuse have themselves perpetuated violence against their partners, and are more likely to report one-off incidents. When the abuse is limited to four or more recurring incidents, the percentage of victims who are female jumps to 89%.

Unfortunately, it is a common tactic of perpetuators to claim victimhood as a way of covering up their own crime. They’re also far less likely to blame recurring abuse on the real victims, for the practical reason that it’s easier to remember the truth.

Where does that leave the genuine male victims? Following my own coming-out as a domestic abuse survivor three years ago, one unexpected development was the coming forward of male survivors. Although smaller in number to the female survivors who also confided in me, they had the greater impact as an illustration of how convoluted domestic abuse really is.

These straight men had been abused by their ex-partners. They demonstrated respect for women, and couldn’t understand how that could have made them victims.

What these guys highlighted was the notion that turning the table on male perpetuators simply because they’re male doesn’t redress the balance in any way – it simply redirects the misogyny without a solution. Far fewer women than men perpetuate domestic abuse – but are three times more likely to be arrested for it. How is that proportional to the numerous crimes perpetuated by men who escape arrest? 

Men suffer from domestic violence in silence due to their own stigma, imposed by other men in society. They’re less likely to report ongoing partner abuse to the police because ‘it’s too trivial or not worth reporting’. Yet the choice impacts adversely on their psychological wellbeing in the long term, and doesn’t really further the feminist cause enough if we don’t address it.

So if we’re to promote true gender equality, we need to recognise that men also suffer from domestic abuse (albeit in smaller numbers), and support them without judgement. We need to be reminding them that showing vulnerability takes courage, misogyny is primarily male self-disgust projected onto another person, and that frank admittance to their own quirks and flaws is as much a display of respect for the whole human race as it is for themselves.

Happy International Women’s Day.