I was one of the “lucky” 200 or so people “selected” to attend see me…..now, billed as “Scotland’s Programme for Ending Mental Health Stigma and Discrimination” It was to be a “movement for change” an “agenda setting event” that was to take place over two days. In return for my attendance they offered free meals and overnight hotel accommodation; being a single parent of two children with zero support or respite in spite of suffering from a severe and enduring mental illness I’d have been mad to turn it down on that basis alone. Those of you who’ve known us for some time will know we don’t have a great track record with seeme or for that matter any of “the orgs”. It’s like rain on your wedding day, a black fly in your chardonnay that in all my time as a mental the only stigma and discrimination I’ve suffered, outwith the MH “profession” has come from the orgs. I’ve talked about it before here and grumbled about if for years on twitter. I was also persuaded to “give seeme a chance” they were re-founding, things were changing, this time it was going to be different.
I’m very keen on change, both personally and politically (with a small, very small “p” in this instance) I think I have a lot to offer to the wider mental health “movement” it’s a movement that hasn’t actually moved in years and from where I sit shows little sign of doing so but I wanted to be involved, I wanted to have my say, I wanted to be seen. I agreed to go.
The week of the conference was as ever a tumultuous one, as I sit here now I can’t tell you what that tumult looked like as I can’t remember. One can only assume it was the usual blur of depression, amnesia, suicidality, happiness, loneliness, self-injury, caffeinated drinks, insomnia, laughs with friends, trips to Tesco, wine comas, catching up with laundry, school-runs, getting up, going to bed, general madness and getting on with life and all it brings. All in all, a normal week with DID.
All week however I sat with the pervasive feeling/knowledge that though I wanted to be part of “a movement for change” and though I wanted to have my say and be seen, I didn’t think an event run by seeme was the best way for me to do it. I really wasn’t up for it at all.
I don’t doubt some personal/pathological reasons for not going crept in; it was a huge thing for me to do, to go “out there” again after some 5 years out of the loop, out of any loop. I had to consider whether it was safe for us to do, after all my twitter account is public, the venue of the conference was publicised so there were some risks to be managed. I briefly considered our “stability” and whether that in itself was a factor in my reluctance to go but rapidly disregarded it. If we wait until we’re stable to do anything then we’ll never do anything. Where stability fails, heavy dissociation kicks in. Though I’ve been impotent for almost 5 years in a “work” sense I haven’t lost any of my own, individual skill set. Many of those who share my life/mind/body have similar skills and more than anything we’ve learned recently that a mind like ours needs
I arrived at the conference having had to endure a drive with the car playing various tricks, a “low pressure warning” and a very noisy brake disc, it wasn’t the best journey I’ve ever had but I arrived on time. Things kicked-off at 9.30 ish with the usual conferency, welcome type talk but this talk had added extras. There was the usual warning that the fire alarm would be tested at 1pm, fine, it’s good to know we didn’t have to flee a possibly burning building, and there was probably some stuff about room check-in, lunch and things, fine. What was also broadcast to the conference hall was a telephone number by which attendees could access “trained staff available to offer advice and support”.
An event to address stigma and discrimination in mental health had assembled a delegation of adults to discuss the topic but felt the need to offer this service?
That is stigma.
An assumption that by value of having a diagnosis, an adult can’t make it through a conference without “trained staff” or “advice and support” is insulting and inappropriate. My mental health is “wobbly” and, as is normal for “a day” I was often triggered, once particularly badly. Do you know what I did? I got up and calmly and quietly left the room, sat in the car until I felt ok, went back in and picked up where I left off. I was triggered again in the afternoon, (even though I’d specifically requested two of the facilitators not do something they were about to do) it was the kind of trigger that provokes a freeze response from me so I just sat there, frozen and quietly distressed for a bit, came back and carried on. Sure, dissociation, DID strives to stay hidden and no, I haven’t gained some sort of mastery over my condition but I am an adult and first and foremost I am responsible for me, for my safety, for my health. Had I been in need of support to make it through the conference I wouldn’t have attended.
Naturally, I tweeted my opinion about the offer of support on the #seeme14 tag it wasn’t my first tweet of the event, my first was alluding to something contained in my hallowed seeme canvas bag which was given to me at registration. I can only describe this as “a worksheet”, it looks like something you’d give to a child, or possibly something one might have in a WRAP (not the kind with houmous and veg) was it possible seeme were trying to get me to WRAP by stealth or was this just further evidence of the patronising, paternalistic tone this event appeared to have taken on? The worksheet was later explained to us I think we collectively ignored that bit.
We had a visit from “the minister” Michael Matheson MSP came along, said nothing of great note and was thanked profusely for deeming the event worthy of his attendance. I’ve not seen such cringe inducing gratitude for somebody doing their job for a long time. Was this not a re-launch of the mental health movement in Scotland? Should there not have been cross-party representation? Should there not have been time for questions of those elected to represent us? Did seeme think so lowly of themselves that they couldn’t insist on this or was the assumption that the attendees would be incapable of engaging with that level of debate?
One of the opening speakers for the conference was quite the package, the neat recovered package who had been mentally ill, had felt stigmatised but it was ok as she was better now, fully recovered and back to work. That great marker of validity in society and sadly even the mental health “community”- the ability to carry out paid work. Sure, I was pleased for her, the fewer people who have to drag themselves through life chronically mental the better as far as I’m concerned but everything she said was irrelevant to me and others like me. I was already beginning to feel I was in the wrong place.
Later in the morning we were introduced to Ketso; I was going to provide a link but everything about Ketso, including the introduction at this event is like a sales pitch for Ketso. I’m loath to promote it, I have some hope of having to attend meetings, events and conferences in the future and I’ll stab myself in the eyes if I ever have to see Ketso again. It’s a way to gently facilitate discussion, a way to ensure everybody at the table has a say, it involves writing things on leaves of different colours and sticking them to a felt mat to build a tree- or something. It’s like the shittest Fuzzy-Felts ever. I know some people like this kind of thing, I don’t. I don’t need gently facilitated discussion; I know how to have a useful discussion, round a table with other adults. Again I felt patronised. It didn’t help that the sections of the Ketso session were demarked by a facilitator ringing a bell. Pavlov’s facilitator was lucky she wasn’t eating that fucking bell after the first few rings. The first discussion group I was assigned to unanimously agreed that Ketso, being as it was so heavily prescriptive actually curtailed discussion. I shared our collective view on twitter, I was patronised in return, I was beginning to feel like I was on a different planet.
Lunch followed the morning session, as a whole the event was so “tight” and so heavily structured/constrained it allowed very little time for more natural mingling so any opportunity to speak to other attendees outwith the “classroom” was welcome.
The afternoon began with another Ketso session; I was assigned to a different group this time. The subject being “discussed” was “changing stigmatising and discriminatory behaviour” and so elicited ground-breaking responses such as “we should talk about mental health”, “work-places should have mental health policies in place” and “children should learn about mental health” eventually I lost it. I lost it in a passionate yet articulate way, as I do. I wanted us, “us” being individuals, us being the wider mental health community both mental and professional to stop having the same conversations, to move the movement on. I’ve always been wiling to and always have spoken about mental health, openly. I’m not ashamed of being mental, there are many like me but as I’ve said before- nobody wants to listen to us. We’re noisy, we’re dirty, we say the wrong things, we don’t recover, we don’t take hot baths as therapy, we eat lunch and don’t label it “self-care”. We live with mental illness. There was a stunned silence from the rest of my assigned group, a facilitator stepped in to give me the “big ships move slowly speech” I tweeted my feelings and began to wish I was on a different planet.
I checked into my room after the afternoon session, I was cheered to see it was DID friendly and had 3 beds…….I had a little cry, I was tired, it had been a long day but more than anything I was just plain old upset at what I had seen and heard.
We picked ourselves up and went for dinner; we were allowed to choose who we sat with for the first time that day which felt like a privilege by that point. Dinner was good, proper conversation was good; an end to the frustrating pap of the day was the best. A theatre company were due to perform after dinner, having taken one look at the programme I knew that it was likely to be one giant trigger so I decided in advance to skip it. Feedback the next day from those who had stayed was that it was indeed one giant trigger so I made the right decision, which being as I’m an adult and pretty selves-aware is no surprise. We shunned the theatre company in favour of the bar where we sat with a much loved friend and lamented what we had seen and been part of during the day.
We had some interesting conversations in the evening, met a few people, had a few chats, and shared our views on seeme14. During the evening it was made clear to me that my negative views, expressed on twitter had not been too well received, was it possible I could say something positive? Yes, had there been anything positive to say then I’d have said it. It was soon clear to me there was no room for dissent at seeme14. The mental health movement in Scotland, now and in the future doesn’t want activists, it wants followers.
Day two of the conference began traditionally- with a hangover. It’s not day two of a conference without one and that’s why the first time I met Margaret Curran I was crying and shaking whilst trying to type up a speech. Even then I was good at multi-tasking and crap at hangovers, she assured me that some of her best work was done in a similar state. I’ve taken my eye off the party political ball a bit to save what’s left of my sanity but I’m guessing Margaret could do with a few more hangovers.
Day two also began with a pile of doubt. I’d been told-off for the things I was saying, I’d been asked to change or at least keep quiet (all off the record obviously) I couldn’t decide if I was doing everything right or something very wrong. For the first time ever, even though I’ve been [officially] mental since 2009 I felt “disabled”. I hesitated for hours (I woke, as is usual just after 4am) and eventually hinted at my conflict to friends who were overwhelmingly supportive and encouraging. These were people I knew, who knew me, these were people whose opinions I trusted and these people were saying “carry on as you are”. I also got messages of support from other attendees, not publicly of course but their point was the same: I should carry on as I was so eventually I did.
I dragged our hungover body down to breakfast and then into the conference hall. Fortunately my much loved friend is like a walking pharmacy so was able to furnish me with painkillers for my headache, the group we sat with after breakfast contained people we’d met the night before and they very kindly kept my water glass topped-up. There was a summary of the day before, it included an overview of the reaction on social media (which was sparse) it was overwhelmingly, 100% positive, even though I had been one of the most prolific tweeters there, I hadn’t been seen. The hangover lingered, I did not. More Ketso sessions were scheduled for the morning, so we decided we’d had enough of being patronised and hearing the same things and left to lounge in the hotel lobby until the workshops began.
In the heat of the moment during the previous day, when I’d gone to sign up for a workshop only to find them all full, I offered to facilitate one. I was thinking on my feet but chose the topic “The Damage Done By The Recovery Movement” a subject about which I am passionate and knowledgeable but which I’d liked to have time to think about. I had no idea there were going to be “pop-up” workshops but I don’t think seeme did either. I’ve done this kind of thing before with ease and though it’s been some time I was confident enough I could do it again. I managed to find some coffee before the workshop, my head still hurt so I asked my pharmacy-friend for another painkiller, it had registered with me that the painkillers in question were Tramadol which I’d never taken before but my head still hurt and I had a workshop to run. To my surprise 11 people had signed up for my controversial workshop and at some point during the morning a director of one of “the orgs” had asked if he could attend too, in spite of my rampant hatred for everything he represented I was keen for him to come along. The workshop went well, there were a lot of excellent contributions from lots of different “angles” (mentals, voluntary orgs, NHS) a really good picture of the problem and what seeme could do in the future to address it, began to come together. The feedback from the workshop was good and people thanked me in person and on twitter for the opportunity to speak about that pernicious beast “recovery” and all it entailed.
The workshop also provided the perfect working model of DID, as an individual ANP I suffer from emetophobia, nothing scares me like vomming, the threat of vomming, someone else vomming, anything that might make me vom, you get the picture. About half an hour into the workshop that Tramadol had well and truly kicked-in, I felt dreadful, I’m grateful that opiate induced vomming comes on suddenly and with very little warning. Dissociation allowed me to ignore the fact I was off my tits on Tramadol (never take drugs prescribed for anybody else, kids) and when the vomming started we were able to switch so that our two exits from the workshop to vom went largely unnoticed and someone less inclined to be histrionic about vomming could get the job done. We were able to leave, vom, return and pick up where we left off. There were doubtless a few “continuity errors” during the workshop but all in all it was a job well done and finally, after a day and a half I finally felt like I’d been seen.
It seemed all I had to do to counter my desperate sadness about the state of the recovery movement, the reaction of the orgs and the complete lack of understanding afforded to people like me was:
Do something myself
I’ve long though that going it “alone” with the [number I will never reveal] others who share my life/mind/body was the best option, seeme14 confirmed this for me. I hope that I can work with seeme and others now and in the future, but not in the way they tried to get me to work with them at this event. I am passionate about ending stigma and discrimination, I’m passionate about mental health, politics and people. I’m confident, articulate and knowledgeable, I glibly accept drugs from people I’ve only met in person three times, yes but I don’t want or need more of the same rhetoric on mental health, neither does Scotland now or in the future. I hate to use a slogan that thanks to one of the orgs has become utterly meaningless but perhaps I can give it back some meaning and say: It’s time to change.