Tamar Whyte-Jeynes 👖 Profile picture
Over-educated, underpaid #LivedExperiencePractitioner. Working towards equality & parity of pay for openly ‘Mad’ people working in MH. BIGSPD Exec. #madtwitter
10 Jun
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 But that has been replaced by sadness that people would actively use my disability - which I am open about for work purposes - to gaslight me in this way.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 >
Read 11 tweets
26 May
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 >
Read 15 tweets
18 May
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 >
Read 11 tweets
9 May
1. This is the reality of the toll that mental health activism takes on campaigners. Campaigns often have to be done at the last minute, where issues are only discovered after the publication of an evaluation, shortly before a deadline to public responses, or to stop a roll out >
2. What people don’t see under all the protest is the toll the protest takes. Bethan’s presence on Twitter is a strong, formidable force - an intimidating wealth of knowledge that busts a hole in the shitshows that pass for involvement. People don’t see the the toll that >
3. level of head over the parapet takes. In addition to the mental gymnastics of reading and interpreting complex shit, breaking it down to its basics and then reapplying principles to it to working out the gaps and building up a robust counter argument, there is the emotional >
Read 21 tweets
29 Apr
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 >
Read 13 tweets
8 Apr
#EpilepsyTwitter, I have a question for you! Does anyone ever experience a feeling like an electrical pulse, or what can feel like an electrical jolt, but that isn’t accompanied by a jerk? Not a myoclonic jerk you would normally associate with #epilepsy, but a similar feeling >
> without the jerk itself, and no micro loss of consciousness. I usually feel it in my forearms or legs, but sometimes in my lower back. I described it to the nurse who runs the #epilepsy clinic, she hadn’t heard of it before. I think she is wondering if it it not epileptic, >
> but more anxiety based. As I’ve been writing this Tweet I’ve had a small one in the top of my arm and in the side of my back. Sometimes it can be accompanied by feeling sleepy. No loss of consciousness though. If I had to describe what I thought it was, it feels like >
Read 4 tweets
7 Apr
1. Has anyone else had problems with @IrregularChoice jewellery? I ❤️ the designs so much, but when my #Kittynaut necklace arrived the clasp came off as soon as I took it out the box! I was annoyed because it was so f* expensive for costume jewellery but thought sod it I’ll just> Image
2. put it back on myself. Then I wore it once and it came apart, but I loved it & there were no more and so I botched it together, wore it once more & it totally fell apart 🤬 Then I fell for the #IrregularChoice Smile necklace in the sale, second time I wore it, it fell apart > Image
3. Again, #IrregularChoice jewellery is damn expensive even in the sale so I thought I’d better complain this time but having had such bad health recently with low mood just couldn’t face it... crazily to cheer myself up I very stupidly ordered their Pink Poodle earrings. Yes, > Image
Read 11 tweets
16 Feb
Since I’ve been doing these, I get messages from ppl ‘off the record’ who either need to reach out for support or who reach out to provide support. I’ve found the hardest thing is being treated with such different levels of respect in different contexts. Does anyone else >
> experience this? What I’ve found is that as I’ve had expertise recognised and respected in some contexts, the contexts in which it is disrespected somehow go from being upsetting to unbearable. As you raise the fact that what you are experiencing is discriminatory & >
> disrespectful, and you have it ignored time and time again, you go from being able to give the benefit of the doubt, of being able to put what is happening down to ignorance, to starting to realise that it can no longer be ignorance. So what is it? Is it maliciousness? >
Read 16 tweets
14 Feb
This reminds me of the time I was part of an art exhibition in Schloss Hartheim in Austria. The palace had been used as a gas chamber in by Nazis to murder disabled people & ppl with learning difficulties, so it was now an institute to take care of ppl with learning difficulties>
> The palace was beautiful but such an ugly, evil thing had been done there. The downstairs was a museum that remembered what had been done. Upstairs was the art gallery, where work of disabled artists was shown. There was a custom built, beautiful building next door, where >
> residents lived, and appeared to have a much happier life in comfortable surroundings where they were free to create. The ugliness of the past was remembered though, alongside the progress of the future, a memorial to prevent the same thing happening again. >
Read 5 tweets
3 Jan
Discrimination is everywhere - sexism, homophobia, racism. I tweet a lot about the discrimination faced by #LivedExperiencePractitioners #LXPs who openly use their lived experience of mental health in their work. Do we need new legislation to protect us all from #discrimination?>
> Ppl who follow me/know me in real life know my health has been decimated over my experience of trying to address mental health discrimination. Did you know there is no legislation against systemic discrimination? Well, that’s what my union told me. It’s also almost impossible >
> to win a personal discrimination case, so they don’t give you access to a lawyer. Even stress claims are hard to win, so you rarely get union help either, including legal representation. I’ve lost my driving license, had seizures, take medicine that has left me with blurred >
Read 24 tweets
31 Dec 20
Yikes. I’ve had a bit of a shitty night. Woke up from a dream where I was sobbing - proper distressed, inconsolable body sobs - about work. I was living in a tiny cramped flat with my deceased family members, with no room. People from work were coming in and out & I felt >
> ashamed and I was trying to say that I used to live on my own in a bigger flat and not share a bedroom with my siblings & live with my Mum but I couldn’t. There was a new manager who came to see me and somehow bizarrely ended up in my bedroom waiting for me and it felt >
> intrusive & shaming because she saw my poor living conditions and I knew she would have been told by management that I was unstable/troublemaker/no good/rubbish. So then I cried and cried and cried and cried (to show how stable I was 🤣) and then I woke up 😳😳😳 >
Read 35 tweets
19 Dec 20
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 >
> privilege are treated worse than their colleagues, paid less, exploited with no career opportunities. So heaven help our openly #Mad #LXP colleagues of colour, who are LGBTQ, with coexisting health conditions. Is it any coincidence that myself and my colleague - both with >
Read 8 tweets
16 Dec 20
COVID is frightening. The deaths, the restrictions, the lack of knowledge and consistency of how to deal with it. Conspiracy theories are a response to fear, I suppose. Thinking about it that way may help to mitigate clashes with ppl who believe them. There is generally a grain >
> of truth in everything. During periods of crisis & uncertainty, there are always people who use this for profit, like the disgusting assigning of contracts to companies who have never produced the PPE they were paid for. They also happen to have links with govt ministers >
> so yes, it makes sense that ppl mistrust the govt and the freedoms being taken away, because the ppl doing it aren’t trustworthy. But that doesn’t automatically mean that the precautions & restrictions to control the virus are wrong or the virus doesn’t exist. >
Read 4 tweets
30 Nov 20
#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 >
Read 20 tweets
20 Oct 20
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 20
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 20
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 20
#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 20
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 20
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