#LXP explanation thread: There is no standardised language in the Survivor movement. When I use the term #LXP it is an acronym for #LivedExperiencePractitioners or #LivedExperienceProfessions. It refers to ALL people who work in posts that require use of insight from >
> lived experience of adverse mental health. So that includes LE Consultants, Survivor Researchers, Peer Support Workers etc, It’s not a universally accepted term, but when I tweet I need to use *something* to refer to us all, so that’s the term I use, because it’s quicker than >
> writing an explanation each time that Twitter doesn’t allow enough characters for, unless it’s a thread which people are less likely to read (ha, that’s a hilarious thing to say in a thread 😂). We all do very different roles but the one thing that binds us is the unique way >
> we openly use lived experience within our roles. Most people have lived experience and sometimes use it to inform their work, but that isn’t generally recorded within literature as a skill in itself, it’s not actively developed, acknowledged or encouraged within ‘straight’ >
> disciplines. It doesn’t inform the complete approach within the discipline. That approach creates a different relational approach to the work itself, as well as between colleagues and service users. It also openly challenges stigma, by just existing it challenges the >
> attitudes of staff and some service users, who may absorb negative & stigmatised views towards adverse mental health. This also means that all of, no matter what our work - research, supporting service users, consultancy - all of us face a stigma and discrimination that is >
> unique to our open use of lived experience in our work. It threatens some people. It challenges the status quo. We are punished because of this. We are paid less. We are given lower banded roles than our colleagues, even ones whose role requires less >
> qualifications, knowledge or experience. Our survivor led projects or organisations are less likely to be funded. We are often in precarious financial positions, risking our jobs (our organisations are more likely to fold or go into administration). Individually the cost is >
> a ‘normal’ life. Being kept poor means we may face threats of eviction or homelessness, food bank access or struggling to make it through the month. Try working well & advancing knowledge in your discipline with that over your head. We may never own our own home, our lives >
> may never feel stable enough to have relationships or have/adopt/foster children. There is often a very high price that we pay for the work we do, it’s often unseen and unspoken. Even if we do reach the dizzying heights of academic status, groundbreaking work, that is still >
> not a guarantee of the levels of status of our colleagues. A paper I always point to is the one below. It is a shocking expose of the fact that research funding into ‘including’ people with mental health conditions doesn’t actually go to projects > tandfonline.com/doi/full/10.10…
> we lead. If @BeresfordPeter @DianaRose160 @SchrebersSister - two professors and a doctor - working within a discipline are finding that they can’t obtain funding for research that is about including us, what hope for those of us who want to grow within our discipline? >
> this doesn’t even begin to describe the stigma within the workplace that we face. In research I did alongside @melanieanneball and Fiona Stirling, we received some heartbreaking examples of this. Like the #LXP whose team went on a ‘team lunch’, but didn’t invite them, because >
> they were a ‘service user’ and not viewed as a valid member of that team. There are constant blatant examples of discrimination that other people refuse to see. The blatant is invisible, not to even start with microaggressions we face. There are some staff who won’t even >
> make eye contact with me. It is usually after challenging discrimination and equal working, not knowing my place. But this isn’t just unique to me, the research we did, the papers other people have written, the blogs and conversations of many of our #LXPs, reveal this very >
> same issue. Yet we keep working, keep challenging, despite the cost to ourselves, because we feel that this is something so important that it needs to be done. I’m often moved by what my colleagues do, and how they bounce back from hospitalisations, hurt, poor health >
> caused by the the stress of constantly experiencing discrimination of the systems that we work in. It has kept me going when I have experienced this myself, I know that this is bigger than me, and that it is a normal, universal experience that we all face. We are not weak. >
> We are have to tap into a strength than many will ever have to in order to simply exist within their workplaces. So, #LXP may not be a universally accepted term, but it is the attempt that many of us are using to describe the umbrella that we all sit within, and our shared >
>experience of working as ppl whose role requires openly using insight from lived experience within their work. I’ll finish this thread with a shoutout to all my fellow #LXPs, you inspire and make a difference just with your sheer existence, let alone the incredible work you do❤️
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More from @tamar_whyte

20 Oct
I have just finished reading @BPDFFS chapter in the ‘Working effectively with Personality Disorder’ book. It’s a beautifully written first chapter to the book. A complex subject introduced in simple terms, without dumbing it down. /1 > amazon.co.uk/Working-Effect…
> I love that even though @BPDFFS describes the chapter as ‘personal thoughts about personality disorder’ - she provides an example of experiential working at its best - she uses insight from her own lived experience, but positions it within the wider range of views that exist /2
> within the survivor movement, from the anger of people harmed by poor services, activists using satire as a tool for protest, critical views (both negative and positive), people satisfied with the service they receive and those who feel that the label has helped them. What /3 >
Read 8 tweets
10 Oct
It’s #WorldMentalHealthDay - a day that #MentalHealth activists love to hate, because hey, it’s not all light at the end of the tunnel (yay Recovery 🙄) & it’s not just one day of the year. But sod it, here’s a pictorial compilation for you. Bonus points if u get to the end 1/25
2/25 Meds. Love them or loathe them, they are a daily reality for many of us. Big Pharma makes a lot off us Mentals. Did you know that my most debilitating diagnosis can’t be medicated? But all the others equate to 13 tablets a day, plus any extras on PRN #WorldMentalHealthDay
3/25 I’ve never, ever, ever been able to maintain taking meds regularly. But I do now. The Hubster wakes me up with a coffee, toast and meds. But having a caring, loving person in my helps me more than any meds. Sadly not available on prescription for us all #WorldMentalHealthDay
Read 26 tweets
21 Jun
It’s good that examples of CEOs taking race discrimination seriously beyond just listening to stories into action is happening. I hope that these skills in tackling inequality will be used in tackling discrimination that #LXPs face too >
> As a mixed race, pan, disabled woman, none of the #NHS staff networks provide the support I need because where I face the most intense discrimination & inequality is openly using insight from a mental health condition in my work. It’s not an area any adequately understand /2 >
> Because they don’t understand how this extra layer of discrimination impacts on their #LXP members, because it’s so invisible, we can’t get the support we so desperately need within them. I notice that my #LXP colleagues who aren’t white, are LGBTQ, physically/neurodiverse /3 >
Read 22 tweets
17 Mar
#BusStopWanker #Diaries Sometimes even a disabled bus pass isn’t enough to get around. Woke up this morning at 6am crying, fell asleep & woke up with a massive cry fest hangover. Couldn’t wake up for the headache. The Hubster has had to take me to triage appt 4 dental surgery /1
One of the ways of coping with days like this where I have to face the world whilst my insides and face are in a state is a shit ton of make-up. Unfortunately in my haste I’ve left it. So had to make do with a brush & hat /2
The current dip in mood & anxiety levels are caused by the impact of stress caused by my own experiences of discrimination as an #LXP, but mainly the levels of energy & effort it takes to address it. It involves me skilling up support staff on LXPs ie. union/equality staff /3
Read 17 tweets
12 Feb
Ok, that bath was a bit of a disaster, I think I’ll have to start a #BathTimeWanker series to rival the #BusStopWanker one 😹 So, my lovely mate made me a beautiful pamper basket. I’ve been trying to use it since Sunday. I’ve built up to this moment since waking up this morning/1
I have fun adding the biggest, most unicorn bath bomb you’ve ever seen in your life. I add half a bag of Epsom salts. Some lavender bubble bath. I go downstairs & get a drink. Since I have no bubbles to stick in a champers glass to be totally extra, I make a cuppa of earl grey /2
Obviously the Earl Grey needs a splash of Lidl’s finest gin & loads of hunny. Yum yum yum. I keep adjusting the temperature of the water because I’m not going to do my usual trick of ending up with it being stone cold/too hot & wasting a years worth of bath products /3
Read 11 tweets
6 Feb
It’s #TimeToTalk about people who are employed to use their experience of mental distress in MH charities ie. @MindCharity @TimetoChange. #LivedExperiencePractitioners #Peers experience discrimination, derogatory pay & active blocks to career progression #TimeToListen #TimeToAct
#TimeToTalk Many people don’t realise is that large generically run charities such as @MindCharity are given majority of funding, whilst orgs run by people who live with mental health conditions & grassroots groups are not funded. We are becoming extinct. theguardian.com/society/2019/j…
The National Service User Network @NSUN is run by ppl with lived experience of Mental Health condition, but even that has lost its funding - the one org trying to support and keep our SU-led orgs together! #TimeToTalk Why can money go to @TimetoChange but not SU-led national org?
Read 11 tweets

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