Discover and read the best of Twitter Threads about #LXP
Most recents (23)
@kateneuropsych @threadreaderapp @kawaiilovesarah @viscidula @SaferAcademia @DisabledAcadem @DisInHigherEd @APApsychiatric @APA 1) Thanks, I understand and agree with most of what you have said, in particular about WS & love the idea of it being diagnosed as a psychopathy in itself. The lens I work from within the LXP discipline is as an end user of services and using the insight of this, alongside the >
@kateneuropsych @threadreaderapp @kawaiilovesarah @viscidula @SaferAcademia @DisabledAcadem @DisInHigherEd @APApsychiatric @APA 2) range of community stances, academic knowledge, grey and published literature that exists. I run a #MadStudies group & Dr Colin King, @BacaBaca2012. He is a ‘Mad Academic and partnered with the Mad Studies group to write this article in the Lancet: pubmed.ncbi.nlm.nih.gov/33894174/ >
@kateneuropsych @threadreaderapp @kawaiilovesarah @viscidula @SaferAcademia @DisabledAcadem @DisInHigherEd @APApsychiatric @APA @BacaBaca2012 3) Colin also talks about Whiteness and we learnt a lot during his visits to the group. We also have @MadBlackPixie, an E&D consultant who is a Co-facilitator, and David Gibbs, not on Twitter, who does the same work. I think where we differ is on the need to name the >
@kateneuropsych @kawaiilovesarah @viscidula @SaferAcademia @DisabledAcadem @DisInHigherEd The panel is balanced between people of colour and White People. As a Mixed Race woman, I’ve seen mental health devastate my family members and seen the intersectional mix of saneism and racism in diagnosis and treatment. Saneism is a real thing. It needs a name, a word. >
@kateneuropsych @kawaiilovesarah @viscidula @SaferAcademia @DisabledAcadem @DisInHigherEd > The cruelty of saneism is something I’ve experienced first hand, it has devastated my career as a Lived Experience Professional #LXP. For the very few colleagues of colour who experience both saneism and racism, the experience can be even worse. It is so important to the >
@kateneuropsych @kawaiilovesarah @viscidula @SaferAcademia @DisabledAcadem @DisInHigherEd > #MadCommunity including end ESPECIALLY our more vulnerable Black & Brown comrades that saneism is recognised. I pass as White and got a typical White girl diagnosis in my 20s. My brown brother has had police called and handcuff him when he has been in distress. My Uncle has >
1) I always say I’ve worked as an LXP since 2010. But I forget the work before, my arts practice, focussing on the extremes of emotional pain, mental distress, the way others treated & viewed it. It was activism & narrative from within, naive in a true isolated, outsider sense. >
2) I connected with others in darker corners in darker places from 2005 when I was labelled and our labels connected us and helped us find each other and find comfort in sharing our dark places. Recovery wasn’t our language. When you are chronically in pain, sometimes you need >
3) other ways of relieving that pain when medication doesn’t work. Sometimes the pain is a purging to clear something terrible that is blocked. We didn’t understand our treatment from services was poor and that there were other ways we could have been helped. >
1/ I want to say a great big thank you to @chris_kammy for speaking out about #apraxia affecting his speech. I’ve been inconsolable over the last few days since I’ve discovered that a complication of B12 deficiency & pernicious anaemiaI’ve been diagnosed with, is #aphasia >
2/ I thought a few low vitamin levels was no big deal. I was having the munchies after an injection so I Googled to see if that was a side effect & I stumbled on the complications associated with B12. I have every single one. Some, like heart problems and reproductive stuff >
3/ are reversible. But the neurological and nerve damage can be irreversible. I have every single symptom and I’ve had them now for years. B12 & folate deficiency can happen if your diet is a bit shite, or if you are vegan/veggie. The hubby cooks from scratch and I’m not veggie >
1/ VIOLENCE IN INPATIENT FACILITIES: I keep thinking about when I was last in a psych ward. I almost sucker punched a staff member. They’ll never know. I’ll be forever haunted by it because it would have been an auto-response I’d had no control over but could have got in a shit >
2/ ton of trouble over & badly hurt someone to boot. Remember that when in an inpatient facility the power levels are very imbalanced so my explanation would likely not have been seen as a ‘sane’ explanation or believed. I’d have been pinned down & had several staff on my tail >
3/ 24/7 after that, plus an addition to my notes of being a violent patient. Here’s the context: Anyone who has been in one knows how hard it is to sleep. Rubber sheets in summer & a hard mattress leave you waking in a wet, uncomfortable mess. People in distress & loud wards >
1. I’ve been reflecting on the nature of working relationships #LXP staff have with other team members. The nature of open diagnosis for the role means that most see SU first & colleague second, if at all. It makes it impossible to develop the same level of working friendships >
2. which most ppl have a chance to develop. The relationship is based on placating rather than equality. The #LXP experiences smiles, nods or silence when challenging poor practice. No challenge back, because they have no power and are not worthy of the effort of challenging. >
3. The placating and false smiles can have a much darker impact on #LXP staff. A belief that they have developed real working relationships & friendships with staff, that they are respected and cared for, can develop. This is NOT because they have attachment issues, are needy >
1/ Oh dear @laurevans311. Methinks u have missed the point entirely of what staff working in the Lived Experience Professions do & range within the discipline. We actually use the insight from lived experience and work from an experiential lens. Did you know we have Professors >
2/ Lived Experience Researchers, Academics, Lecturers, Organisational Change Agents, Service Design Consultants, Trainers, Facilitators, Service Leads, Peer Workers? @ImROC_comms train their Peer Workers with a BSc Module. I have an MSc in ‘Personality Disorder’ I use to work >
3/ with ppl who have complex MH/trauma/distress, to design services, undertake research, challenge discrimination & stigmatising attitudes amongst staff towards them. A bit like the bigotry displayed in your post and by the 124 uneducated ppl who liked it. Have you ANY idea of >
@zile_amy @_LisaCherry @CarolineJBald @LxpRevolution @NSUNnews 1) I’ll try to do a thread: Check out all of the previous #MadStudies papers at pinkskythinking.com >
@zile_amy @_LisaCherry @CarolineJBald @LxpRevolution @NSUNnews 2) Check out lxprevolution.co.uk @LxpRevolution which is set up to discuss this, it has had a bit of a hiatus in the last few months but is still very relevant >
@zile_amy @_LisaCherry @CarolineJBald @LxpRevolution @NSUNnews 3) Check out work by @DrLouiseByrne who wrote publish.csiro.au/ah/AH19261 >
TULIKAAAAAA!!!!!!! Aside from being excited at seeing a fellow Twitterati on a Podcast - the content - addressing structural racism through activism whilst working inside the NHS is inspiring. I’m considering leaving #LXP activism behind as it’s left me so harmed. Will listen🙏🏽❤️
I just listened to @TChiarletti1 podcast on Emotional Labour, Race & the NHS - it was excellent. It was also hard to listen to. I drifted off and wept, realised I’d scratched my skin so hard I’d drawn blood. Very close to home and particularly pertinent on taking care of >
> yourself because otherwise the system will destroy you. Seeking out support and understanding your place within it, what you can do. The consequences of raising issues - being positioned as a troublemaker. Tulika positioned herself by taking into account her background, her >
1. Check out this great thread. Here is my own experience in this area. I have an MSc in working effectively with people diagnosed with ‘personality disorder’. This includes service design & critically using various models to inform this, ie. all systems analysis, org change >
2. group theory etc AS WELL AS ensuring needs of SUs met first. Studying as an LXP was f* hard because there was the need to constantly critique this through an experiential lens rather than the tried & tested other disciplines who have loads of academic resources to rely on. >
3. We also had to factor in issues such as the contested and western lens diagnosis designed by people from a certain demographic, how it impacted on people on end users from another demographic and intersectionality. We had to justify our positions academically and demonstrate >
1/Surely this indicates an overt example of discrimination - in this instance, saneism- against #LXP Peer Support Work roles? Is this discrimination on the part of #AgendaForChange #A4C or is it unscrupulous managers writing job descriptions that use keywords to dumb down roles?>
2/This is why we need #LXP senior roles so that we have recruiting managers who work within our discipline who understand the different levels of skillsets required for each type of job & ensure that these aren’t belittled by conflicting internal agendas. Presently no structures>
3/are in place in most organisations to prevent this and #LXP staff are at the mercy of benevolent individuals rather than a robust system to protect them from discrimination in the workplace structures & working environments. That just isn’t good enough. The other issue is that>
This. I am diagnosed with various labels that mean I face stigma in services I access. My job is to use the insight from that to improve those services. The problem is, I face stigma in my job because of those diagnoses too. In order to mitigate the stigma, I got a >
> Masters Degree in the job I work in to so that there would be no excuse for non Lived Experience staff to continue to make decisions in how to co-produce services. Like @keirangoddard1’s question in his thread, this was treated as an obstruction to the status quo, a threat >
> something to be silenced and shown the door. Non LXP staff have ensured that future co-production will not be developed by specialist LXP staff trained in the areas of mental health they work in, as well as being trained >
PLS RT: Does anyone know of any #LXP (Lived Experience Professional roles ie. Peer Support Workers, Lived Experience Researchers) that have reached Employment Tribunal stage for Disability Discrimination in the UK? All I’ve heard of reach settlement before court stage #MadTwitter
Employment & Equality of #LXP’s is something that I’m trying to build understanding of because presently it is disparate and isolated by employer or even employee. I hadn’t realised til recently that there have been quite a few Tribunal applications >
> for discrimination at work, however all I have heard of where settled prior to court. I can’t find any examples of one going to Employment Tribunal Court. I’d really appreciate if people could put this out there so I can discover & collate any examples. They will be of great >
1.There is something so heartening about seeing a Tweet that acknowledges that the issues #LXPs have are real & they do have an impact. Because discrimination usually isn’t acknowledged #LXPs never get to hear the words “I’m Sorry” as a genuine apology as opposed to being in the>
2. context of ‘your perception’ being skewed or ‘your feelings’ being hurt, which is like a backhanded way of being told that the way you are being treated is caused by you & not the people doing it to you. It places fault back with you, rather than being the responsibility >
3. of people accountable within organisations to change discriminatory behaviours. It lets people who lead organisations off the hook if there’s no acknowledgement an issue exists, because then there are no national campaigns to appease, no pesky equalities targets to reach. >
1. I’ve had years of knowing stuff isn’t right and being gaslighted into it just being my ‘perception’ or pathology. It’s a pretty cruel thing to do when talking to someone diagnosed with a label that likes to include an ‘unstable sense of self’, ‘paranoid ideation’ & >
2. ‘severe dissociative symptoms’ as part of its diagnostic criterion bullshittery. After finally catching wind that actual evidence existed that I had been excluded, lied to, had things hidden from me, I felt so relieved and happy to finally have something solid to show that >
3. although I’m a loud proud member of the Mad movement, I’m not losing the mind I’ve worked so hard to keep. But that has been replaced by sadness that people would actively use my disability - which I am open about for work purposes - to gaslight me in this way. I have to >
1. I am so, so proud of my fellow Mad activists/allies & supporters who came to a board meeting to support a collective of us raising concerns about #LXP working during public questions. There were ten of us altogether. We had come together in the space of a week, identified >
2. shared concerns about career blocking, exploitation, deliberate exclusion of LXP staff. We gave the recent secretly turned away funding for an #LXP senior post as an example. We had three people scheduled to ask questions, but - and u couldn’t make this shit up... >
3. The third presenter, who was due to ask questions on staff wellbeing wasn’t able to due to being hospitalised over the weekend with a suspected stroke. Being mad is stressful, unfortunately. Instead, two of us covered their section. We left feeling good that the questions we >
1. What people refer to as ‘personality disorder’ in terms of ‘emotional dysregulation’ is interesting. Rather than dysregulation, I’ve noticed a lot of people appear to have a highly sensitive, finely tuned reception to other people’s emotional communication. Not everyone of >
2. course, that would be a massive generalisation. But a lot of people can sense or have intuition of when something feels wrong, or a persons mood is good or bad. Much is likely to have come from early childhood experiences where this skill kept some people safe. It’s less of >
3. a mystical power, more of a supernatural skill that has been developed. But it doesn’t mean that the emotional communication your highly sensitive instrument can be read or interpreted accurately. The emotional data given by the other person when learning the skills as a >
1. The stress that ‘co-production’ takes when power is unequal is highly distressing for the party with lesser power in the partnership, particularly over long periods of time where the power imbalance is sustained and there is no action to remedy this. When power is abused by >
2. ensuring that decisions about LX practice or services can never be made by the Lived Experience Professional in the room, that you take those decisions outside of the room, this causes distress and harm. The harm caused by the abuse is used an example of why #LXPs are >
3. described as ‘vulnerable’, or prone to going off sick. Let’s just be very plain speaking about this - LXPs aren’t vulnerable. They are warriors who have been through wars. What they are is people who already have battle wounds, coming into workplaces that will particularly >
Is it bad that I feel my blood boil when I see equality drives that completely ignore the inequality that people in the #LivedExperienceProfessions face in the mental health organisations they work in. Imagine being in the intersection of being a Black, non-binary LXP? Your >
> experience of discrimination won’t even be registered. It won’t make the equality drive photos. Mad people, esp those who deign to be open about ourselves & champion Mad knowledge in Mental Health settings are actively held back, treated differently. Even LXPs with White Male >
#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 >
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 >
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 >
#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
