Lived Experience

For the love of language, can we talk about that?

By Martina McGrath.

Here in Australia social change in relation to suicide prevention is occurring; and it is not without its struggles. The suicide prevention peer workforce (SP Peer Workforce) is emerging as is noted in Hawgood et al [1]. Alongside its emergence is the development and growth of non-clinical alternatives to care for people in emotional distress, those thinking about or having attempted suicide and people caring for people who experience extreme emotional pain. Both of these developments on their own would represent seismic social shifts in suicide prevention and postvention care in Australia. Therefore, its not surprising that as these two co-occurring innovations begin to unfurl there is some inevitable growing pains. As this new suicide prevention peer workforce emerges, it is important to acknowledge the decades of peer support work, advocacy and leadership that has paved the way [2]. Yet, despite being able to draw on this infinite wisdom and years of hard-won experiential knowledge, there are still some challenges akin to a rite of passage associated with achieving any significant social change. One such challenge relates to the evolving nature of language and terminology in these non-clinical alternatives for suicide.

As someone who has worked across both mental health and suicide prevention as a lived experience advocate for over five years and now working as an early career researcher in suicide prevention, I appreciate these transformative social and health care changes are made all the more possible drawing on learnings from the decades of advocacy and grassroots leadership of peer workers and peer leaders in the mental health and other health care sectors.  Whilst recognition of suicide prevention as a social issue deserving of its own spotlight is relatively new, we are no less passionate, organised and equally driven by the same universal desire of simply wanting to improve the human experience and to do our bit to reduce help emotional pain and distress that suicide brings. We are fellow humans who have lost loved ones to suicide, who have or continue to care for loved ones living with extreme emotional pain and suicidality and we are even those, just like me, who have survived suicide attempts and who are choosing to go on living and continuing to co-exist with suicidal thoughts almost as our inner mind’s invisible constant companion.

We have an opportunity to help shape and redefine new language that better resonates with people experiencing extreme emotional pain and suicidal thinking and attempts. Some of the language we are trying to shift is that which has come from a particularly biomedical way of thinking about and labelling people who experience suicide and emotional pain.  Case in point, there are some words that have been around for eons and have become standard vernacular in relation to suicide prevention health care. And perhaps herein is the rub. This new narrative being proposed by these apparent radical thinking lefty types (have you lost your minds…..yep that happened a long time ago when trauma, grief and loss barged through our collective doors.. but we’re still here) includes clinically derived phrases such as assertive outreach, treatment resistant, non-compliant, even the word patient and the seemingly innocuous terms such as consumer and carer are being called in to question.

While acknowledging this beckoning opportunity to redefine and co-create a new body of language relating to caring for and supporting people with a lived experience of suicide including their families and loved ones, let’s explore how the suicide prevention sector has already been leading the way in terms of  offering up sound evidence to support the use of appropriate, safe and non-stigmatising language when discussing suicide. In Beaton [3] for example, the author calls points out the language associated with suicide needs to foster an environment conducive to talking openly about suicide. Similarly, a further argument is explored relating to addressing stigma as stated in Rimkeviciene et al [4].

Language can cause a right royal ruckus anywhere, among colleagues, families and friends on par with equally divisive topics like politics and religion, often resulting in no end of impassioned debate, sometimes bordering on hostile argy-bargy. For the most part however, language manages to move and morph with the times. But not always, and sometimes it needs a little nudge, like now as the suicide prevention peer workforce and non-clinical alternatives emerge. We can only move things along and make genuine and meaningful change to the discourse of suicide if we do this together, side-by-side during thoughtful, open, respectful and sometimes yes even robust discussions about the language we should use in relation to suicide prevention and postvention services.

The truth is there is too much at stake here for us not to work together collaboratively as a sector to bring into being a more recovery oriented and strengths-based language for discussing and supporting those with a lived experience of suicide. For people who may be at risk of suicide we need to be mindful that we move the language in ways that continues to encourage them to speak openly about their emotional pain. One of the risks here in our fervent push for this new body of language is that there are many people (especially those who don’t work within the suicide prevention or mental health sectors), who need to be able to keep choosing their own dialogue to describe and give voice to their emotional pain. A colleague gently reminded us that we also need to be careful that we don’t make it even harder for people at risk to speak their truths for fear of saying the wrong thing, of feeling they don’t know the right vocabulary to describe their emotional pain.’ She is right of course! The last thing anyone wants is to push the disclosure of suicide risk further underground. This point is well evidenced in Sheehan et al [5]. All that said, I believe there is still an opportunity to compassionately and thoughtfully strike a balance.

A brave new world for those experiencing suicide related emotional pain feels like it is finally dawning in Australia. This new frontier includes the development of non-clinical alternatives, including those led by suicide prevention peers and co-led non-clinical alternatives. We have an opportunity to continue to move towards a more inclusive, humane, compassionate, less medicalised and stimgatising language used in these settings. But, we also need to ensure the language remains familiar and accessible to those at risk so that people continue to open up and share their most intimate emotional struggles to those providing care and support.

It also seems important to me that we don’t lose sight of that which makes us uniquely and beautifully human, namely our ability to connect with one and other.  Often times across cultures and groups communication in its many forms including spoken language is one of our most powerful connectors. So, for all of us seeking to shift the language used in suicide prevention care and these new non-clinical aftercare models currently rolling out in Australia, now is the time to be a little more tolerant to those who hold differing world views. We need instead to find ways to discuss shifting and co-creating a new suicide prevention language with curiosity, openness and simply a shared desire to help make the world a better place for those living with and supporting those living with emotional pain and thoughts of suicide.

Australian support services:

Should reading this post raise any strong emotions for you and you’d like to speak with someone, here are some Australian national helplines and websites:

  • Q Life: 1800 184 527 | qlife.org.au
  • Kids Helpline: 1800 551 800 | kidshelpline.com.au
  • Lifeline: 13 11 14 | lifeline.org.au
  • Suicide Call Back Service: 1300 659 467 | suicidecallbackservice.org.au
  • Beyond Blue: 1300 24 636 | beyondblue.org.au
  • Headspace: 1800 650 890 | headspace.org.au
  • ReachOut: https://au.reachout.com/
  • Everymind: https://everymind.org.au/need-help

Martina McGrath (@MartinaMcGrath) works at Roses in the Ocean in a research and evaluation role. Martina is also a PhD student at the University of Queensland with a research topic focussing on lived experience of suicide and disclosure. Martina also work on a casual basis (and as a Roses in the Ocean staff representative) with the Australian Institute of Suicide Research and Prevention at Griffith University working on various research and evaluation projects.

 

*Featuring Photo by Brett Jordan on Unsplash.

 

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