I joined the Facebook group, Drop the Disorder, just over a year ago. I was happy to find a group of allies. I read a poem at a Disorder4everyone event last June. I attended the Power Threat Meaning Framework launch in January and I thought it had great promise. I also attended the Disorder4everyone event in Birmingham last month which I found inspirational. I have decided to use this framework to illustrate a fairly recent and distressing incident. This is not an impulsive decision. I have been making sense of what happened to me and writing this blog since I attended the launch in January. I have NOT been ‘influenced’ by any other view points from other groups I belong to or any other individuals. Tweeting this blog has been my choice and it is MY meaning of what happened to me.
POWER – What has happened to me?
Power in my life has had a very negative impact on me since childhood. Power in my life in the present can often feel like a re-enactment of the past.
On 1st December I decided to take a break from Drop the Disorder and my other Facebook groups. I told one of the moderators this privately, also stating that I was extremely emotionally distressed due to reasons in real life and that I was presently sometimes finding the group triggering, but that I hoped to return to re-join the group soon. I was sectioned a day later. I received an unexpected email from the moderators on 4th December stating that:
………“We absolutely understand that your self-care must take priority over everything. You have been really honest with us about the extent to which the group feels unsafe and triggering and we cannot ignore the extreme distress you have expressed and attributed to the DtD group.Therefore, we advise you that any request to re-join the group would be declined by the admin / moderator team as we would not feel sufficiently able to meet your expressed needs for a safer space.”…….
……”This decision reflects the duty of care that we have to you, group members and ourselves – the admin/moderator team – as none of us, as individual members of the team, are in a position to accept that level of responsibility.”…….
I have been in contact via email with the moderators since December and asked that they reconsider their ban, stating how this first email had made me feel and asked if I could be given me a ‘second chance’ to rejoin the group in the future when I was feeling more ‘stable’. At first they seemed to change their minds stating on 5th December:
……….“Our decision to decline future requests to re-join the ‘Drop the Disorder’ group does not constitute a lifetime exclusion and, of course, things can change in the fullness of time. However, as previously stated, the primary function of the DtD group is to provide a space for discussion of often difficult issues, and the promotion of activism. The nature and purpose of the group will not change and it will, inevitably, at times feel a risky place. It therefore follows that we cannot guarantee the safety of participants, and the ultimate responsibility for personal wellbeing will remain with individual members.” ……..
This seemed confusing to me and sent out a mixed message as to whether I was or wasn’t banned for life. Therefore, I once again asked for clarification. I received another email on 15 March stating:
………”Your own wellbeing is, of course, an important consideration but it is not the only one informing our decision. Although our previous responses have often highlighted your expressions of distress, alongside general references to the needs of the group as a whole, after careful deliberation – and with some reluctance – we believe it is timely to share some additional reasons that continue to influence our decision making.
In the second half of 2017 we received a number of expressions of concern from fellow group members. While some of these echoed our previously-stated anxieties about your own mental wellbeing and safety, other concerns referred to how some group members experienced your posting in the group. Regarding the latter, it was highlighted that your comments repeatedly deflected the threads away from the original poster’s topic onto discussions about your own situation and challenges. In this regard, people stated that they felt either silenced by your contributions or obliged to respond to you when their interests lay in the original post. A few complainants highlighted what they regarded as excessive commenting and, while some group members clearly valued your contributions to the group, others described experiencing them as ‘excessive’ and ‘overbearing’. Although we accept that these negative impacts were never intended, and that perhaps you were unaware of them, it is clear that aspects of your group activity were perceived as unwelcome by some fellow members of our DtD group.
As stated above, we relay this information with a degree of reluctance, fearing its impact on you. Perhaps we should have shared this earlier, but we hope you can appreciate the challenges experienced by admin/mods in such situations, particularly when the complainants wish to remain anonymous. Rightly or wrongly we opted to keep the information regarding other members’ complaints from you; we can only apologise if you feel this action was misguided and that we should have shared these concerns before now.
We trust you can recognise that we will not be in a position to enter into any further discussion about this matter.”
This still didn’t actually answer my question as to whether I would ever be allowed to re-join the group and so I asked again. I received an email on 30th April from the moderators AND their consultants:
“We don’t think we’ve used the phrase ‘banned for life’ but equally we are clear that we are not able to reconsider our current decision.”
I have been denied access to the connections, knowledge and information within this group of allies where I felt valued and a part of an activist movement. This has had a negative impact on my sense of self and identity and has led to threats and threat responses.
This feeds in to the power/powerlessness dynamic that has affected me all of my life. I have no choice or control in the situation and feel that once again assumptions have been made regarding my level of ‘risk’, and that responsibility for my own ‘self-care’ has been denied.
THREAT – How did it affect me?
Rejected, invalidated, dismissal of my views, betrayed, let down, lack of trust, excluded, discrimination, devalued, ashamed, lack of self-worth, meaning and identity, sense of injustice, silenced, hopeless, pathologised, marginalised, loss, bad, shame, powerlessness, inferior, guilty, judged, angry, victim-blamed, attention seeking and disordered……..
I was already severely emotionally distressed when I received the first email, and knew I would most probably be sectioned, but this exacerbated the threat responses I usually have and I coped in a way I usually do in order to survive. I will not go in to anymore details.
MEANING – What sense did I make of it?
I feel that the whole issue hasn’t been handled well by the moderators, which led me to the threats I felt, and to some extent, still do. It is difficult to communicate by email or messenger and I think assumptions were made by me and the moderators which led to a feeling of meanings being imposed on my feelings and behaviour. I did suggest chatting on the phone but this was refused.
I thought my voice was valued by all in the group. Most of the posts I submitted were approved by the moderators. The moderators themselves replied to some of my posts with comments calling me a ‘warrior’, ‘solidarity’, ‘chuffed for you’ and ‘#YouRock’. I was asked to contribute at the Disorder4everyone at some point and asked if I could read it at the event last June. I was delighted and overcome when I read a poem I had written. I have met several of the moderators and consultants in person on various occasions. I felt an equal and a true ally.
Perhaps I got carried away with this feeling of being valued and of the telling of ‘my story’ and the ‘difficulties’ I have and do have. I had hardly any negative comments in the group and in fact so many members commented so positively. But knowing now, that there had been ongoing complaints about me for months before I left the group has made me feel like a fool. Perhaps I have an ‘Excessive Commenting Disorder’? The awful thought of some group members seeing my comments as derailing, overbearing and that they felt silenced or obliged to respond to my comments has made me feel so very guilty.
I had never been told by any of the moderators that I had broken any of the group’s code of conduct whilst in the group. Admittedly, I was sometimes emotionally distressed whilst in the group (due to the bad things that have happened to me) and of which the moderators were aware. This distress was due to real life issues and I suspect sometimes triggered by posts and comments in the group. This distress, I think, came out in a few comments I made during the year that I was in the group. I also spoke to one of the moderators about this distress on a few occasions. I had also asked for them to follow the group guidelines regarding trigger/content warnings on a couple of posts and stated that the group wasn’t trauma informed. I take some responsibility for the posts and comments (I know at this present time that the group can never be trauma informed due it’s activist nature) although when paranoid, dissociated, triggered and hearing voices this can be difficult as I can write things and then when more ‘stable’ regret this. During the last few months of being in the group I confided with the moderators that I was transgender and I’m really hanging on to the fact that this did not play a part in my not ever being allowed to re-join.
Since I had the first email in early December I have had so few ‘likes’ from any of the moderators on Twitter. Yet, whilst still in Drop the Disorder I had many RTs and ‘likes’. What changed?
I sat through the Power Threat Meaning Framework Launch in January with the words written by the moderators ringing in my mind. I attended the Disorder4everyone event last month and whilst listening to the non-pathologising, non-victim blaming language and the urge for people to tell their stories I remembered the emails I had been sent word for word, started to cry and had to leave the room for a while. I was hoping to speak to one of the moderators in person in a polite and reasonable way and had rehearsed what I was going to say. Unfortunately, the moderators were obviously very busy and so I did not feel the time was right and to be honest during the event I felt there could be a risk of further rejection.
I feel that the moderators and their consultants are saying that I’m too disordered to ever be in the group again. I wonder why I can never re-join? I thought the ethos of the group was that people can and do ‘recover’ with the correct support. I feel they are saying that nothing will change for me. I wonder how ‘un-disordered’ I would need to be to be allowed to re-join the group?
The meaning of what happened to me is my reality of what happened, but I guess the moderators will have a different view. However, I felt the need to tell of what happened to me. For too long I have been silent and trying to understand the power, threat and meaning that has happened since I was a kid. The example I have written about here was totally unexpected. I fear some kind of backlash to publishing this blog but I wanted to show how, what may seem insignificant to other people, can have such a huge impact on me. It’s such a shame that it happened in the first place. I still send solidarity to anyone fighting to drop the disorder and who supports the Power Threat Meaning Framework. In solidarity!
WHAT ARE MY STRENGTHS?
I still have a ‘voice’.
I continue to activate to drop the ‘Personality Disorder’ label.
I’ve recently had an article published in the ISPS ‘Psychosis’ Journal.
I am hopeful that the PTM Framework will make a difference.
I have the lived experience of trauma and power that I can use to try and make change happen and am still trying to get funding along with my mate to open a non-medicalised out of hours safe place/crisis cafe opened in my local area.
I have, and give, support on Twitter.
WHAT ACCESS TO POWER RESOURCES DO I HAVE?
I feel very powerless at the moment. However, although there is a power imbalance as in any therapeutic relationship, the psychologist I am currently seeing has helped me make sense of being ‘dropped’ from Drop the Disorder by using the PTM Framework.