Wednesday, October 23, 2019

Comments by Rai Waddingham

Showing 22 of 22 comments.

  • Wow. As someone who identifies strongly with, and values the various movements for societal/psychiatric change I’m part of – I’d like to thank Sera for raising this. It’s a thorny issue – as I think some of the comments have shown – and it’s really easy just to leave it to other groups to engage with. I can get how some people here might think ‘surely this is a distraction … we need to stand together in order to fight psychiatric oppression and the very real crap that people who are part of the ‘mental health ‘ system go through every day. I’ve heard people say (not necessarily on here, but in the outer non-MIA world) that we just need to focus on what’s important.

    BUT – and this is an important BUT – I think it’s important that we don’t cover over the cracks in our own movements, agencies and organisations for the ‘greater good’. We’re all part of a wider society that is saturated with various forms of oppression, inequality and privilege (class, the colour of our skin, education, gender, sexual orientation, diagnosis …..). It’s part of our daily lives and I can’t see how any of us can be 100% unaffected by the context we live in. I’m affected, even in ways that I don’t fully understand. I think it’s really important that we can discuss these difficult issues openly so we can learn from them and not simply replay the crap that happens in society as if it’s just the way things are.

    This isn’t about judging any one harshly, but it is about thinking about why we accept certain things and certain forms of behaviour. Everything we do has a root, and even those men who have been predatory in the movement have reasons for acting in this way. The point is that they need spaces to reflect on this, deal with it and – importantly – stop it. Unless we – whatever gender we identify with – are able to recognise when stuff like this happens, set limits and expectations – how can it change? If we belong to a group or a movement, it is our movement and I think we can each play a part in nurturing it and helping it grow.

    There are lots of other areas of inequality in the world and in our movements – talking about the experience of women in this movement does not make others invalid or less important. Neither does it mean that women can’t ever abuse or hurt men. Sera didn’t say this – and it’s a really cheap shot that can stop those with a minority voice from speaking out. Instead, maybe we as a movement should be curious about the experience of women and take an honest look at ourselves and the way we acts as groups. I’m doing some thinking after reading this … I am sure others are too.

    I have bucketloads of privilege from lots of areas … but I’m still a women and that has had a particular impact on my experience of society, the psychiatric system and the survivor movement. It’s good to explore this and think where we go from here. Lets keep talking about this – on and off MIA.

    THANK YOU!

  • Hi Steve – thanks for sharing that πŸ™‚ As a voice-hearer myself, I would have taken anything to get rid of the voices when I was in hospital. They were overwhelming (as were the traumatic life experiences they were linked to) and I had no support or encouragement to listen to them, deal with them or learn from them. Instead I learnt to fear them as signs of my illness. It took me years to undo this and return to a place of curiosity and listening. We have much to learn from cultures that have a more balanced approach to voice-hearing/listening.

    One of the most awesome things about last year’s World Hearing Voices Congress was a workshop that featured a shaman, voice-hearer, psychiatrist and Maori spiritual healer πŸ™‚

  • Hi Rossa, that’s a good question. In all honesty, I’m not sure. I spent a number of hours speaking to colleagues (I know some psychiatrists and it was helpful to check out with them what they thought less progressive colleagues of theirs would do in this situation), speaking to legal helplines (in the UK we have a Mind Legal Advice Line which is really useful to check out legalities) and even searching through NHS policies on using the mental health act in cases like mine. It was really worrying as, even if I wasn’t struggling with voices/experiences they could have legally sectioned me because of the ‘nature’ of my supposed-illness. On top of this I was very distressed because of the voices and my thoughts leaking out of my head. Sectioning me would have been a doodle in many ways.

    So, how did I avoid it? Partly it was me and my husband speaking before the appointments and making a commitment to not push things if it became obvious that they were amping up to a mental health act assessment. There are certain questions they tend to ask, and I recognise them – so we agreed that if push came to shove we’d both lie and say that I’d take the medication and Joel, my husband, would say he’d make sure I did. Luckily it didn’t come to that, but I think what saved me from the sectioning is that I had Joel with me and he was able to articulate his support for me, but also to reassure the psychiatrist that he would call them if I got ‘worse’. They felt like they had an ally in him, which reduced their worries of risk. I guess I helped, too, by really making an effort to be ‘reasonable’ and not get too angry/frustrated at their questions. This was really hard under the circumstances, and took a huge emotional toll after the appointments – but it was worth it. The threat was there for quite a while, and I think that’s what made my post-withdrawal experiences so intense.

    The lousy thing about this is that if I wasn’t as lucky as I am (in having someone to back me up an ease the psychiatrists anxiety) then I would probably have been sectioned. Scratch that, I’d have probably given up on coming off meds and gone back on them straight away. There was a LOT of pressure on me at that point. Being able to make an informed choice shouldn’t depend on us having someone there to back us up – that makes for a really unequal system.

  • Hi. Thanks for sharing your experiences. It sounds like you have been through so much – and you make a really important point abut how some beliefs are deemed unacceptable/pathological – but idea that we can or should medicate people because of beliefs they have against their will seems (to me, at least) like a really strong and damaging belief in itself.

  • Thanks Ron πŸ™‚ Yup, I definitely got stuck in that revolving door many a time. Feel free to use my story as you see fit – if it helps, then yay! I hope the book, when it’s eventually completed, will give you a whole range of stories/experiences to share.

    One thing, though, is that when I finally came off meds (and since then too) I’ve had lots and lots of things that would officially be called ‘relapses’. I’ve come to reframe them and see them as learning experiences. Every time there’s something that is very difficult to deal with, it teaches me something that I need to learn/understand. It’s a cliche, I know, but I guess it’s about me seeing it as a breakthrough rather than a breakdown.

  • Hi Alex, thanks for sharing your experiences. I think your story sounds very inspirational and I love that you were able to find the support you needed in alternative healing communities. It’s fine if you don’t want to contribute to the book – we’re all way more than one aspect of our experiences, and telling/re-telling stories can be exhausting when sometimes all we want is live in the ‘now’ not the ‘then’.

    I kinda think stories are amazing and personal things, but also that telling them does sometimes leave me feeling fragile. It can be like putting part of your life and show and waiting to see how others respond to it. As someone who’s had much disbelief/invalidation – there’s a part of me that’s always waiting for the attack. As I’m on my own healing journey I’m starting to feel less raw and exposed with all this – but it’s not always easy.

    If you do decide to get in touch, that’s great. But it’s also fine if you decide not to contribute to the book. As you said, healing is in layers – but doing what works for you where you’re at is a good thing. I do feel strongly, though, that we should never try and poke holes in others stories/experiences. That sounds like a very invasive way for someone to respond to someone else’s truth. I’m well aware my own personal truth chances and grows as I do, but that doesn’t mean I need/want people to impose their perspective on mine.

  • Fiachra,

    That’s a lot of really horrible and worrying effects of the medication. I’m lucky in that I’ve not had suicidal thoughts/feelings triggered by medication – but have met those who have. Finding out good quality info about meds is a real challenge. I like https://www.rxisk.org to look at the kinds of effects other people are experiencing. It can be a frightening list, though :-/

  • Hi John, Yes – we need lots of different spaces and approaches to address the major issues in the way these meds are used in the psychiatric system (and in the way the system / society deals with distress or difference in general). In the UK, as well as in the US, there are some great active groups that are really pushing for change. We need the academics challenging the research perspective. We need people to share their own experiences with/without meds (the good, the bad and the downright scary). We need people like Bob Whitaker, who tour relentlessly to bring that message to as many people as possible. I think we also need people like the Open Dialogue crew showing that alternatives are possible. But it’s not all about those who get the airtime – we also need those people who, in their day to day life, challenge or questions decisions that are made about them or the people they support.

    Peer support groups can give people the space they need to think through how these issues relate to them, and make their own sense of it – but without information and resources those discussions are missing something huge.

  • Hi Duane, thanks for reading and sharing your thoughts. I agree – fully informed consent is essential, along with the end of forced meds and the availability of alternatives. There is definitely a need to take a stand on this, I guess where I sit is trying to fight the wider issues whilst trying to create open spaces for dialogue so people can explore their own options. The balance is a tricky one, though, I think. I remember a time when I went to a ‘Is Psychiatry for Sale?’ conference when I was still very tied to the meds. I left feeling so angry that Jo Moncrieff and co challenged the evidence around the efficacy of meds. I felt invalidated and it just served to make me cling more tightly to the idea that they were perfect. One of the reason I love ‘thinking about medication’ peer support groups is their open attitude that gives space for people to think about their use of meds (and the wider context) no matter where they sit on this divide. I figure we need to approach this from all kinds of angles until things finally change. Thanks again, Rai πŸ™‚

  • Thank you! I’m not sure what else to say exactly, but that means a lot. I’m not yet confident in writing (putting pen to paper and actually finishing an article is a little tricky for me) so the support is welcomed.

    I’m looking forward to people debating and/or challenging some of the content, though, too. I haven’t got this sussed yet – so the debate and dialogue can be a good thing (I’ve had a few critiques about my focus on the words over and above the speaker’s meanings so far). Yay for space to discuss all this openly.

    With much warmth, Rai

  • Hi Megan, that’s a really good analogy πŸ™‚ If a dashboard indicator is lit up then it makes sense to work out what’s causing it (not put a blanket over the dashboard or disconnect the battery)

    I have no idea if I could ever write a book, but the idea you think it might be interesting is really heartwarming. Thank you.

  • Hi Ute. Thanks so much for sharing that – it was beautiful and powerful, and there is very little I feel I can say or add to it. I think it’s important that we remember that stories are not fully formed (and for many of us the very act of telling a story and weaving the beads together is terrifying because they have many reasons to fear linking things together, or have been silenced so many times before). We definitely need to value the seeds of the story, however they’re communicated. Art, poetry and myths seem such an excellent way of expressing that which is hard to articulate directly.

    Much warmth and thanks, Rai

  • Thanks Ted – that’s really appreciated. I’m always amazed by the strength and creativity of people who survive difficult/traumatic experiences (of whatever form). We all deal with it on our own unique way, but the fact we are still living and breathing sometimes amazes me.

  • Hi Donna – thank you, that’s really appreciated πŸ™‚

    I think that’s a really important point. Whilst I talked about a particular kind of trauma/abuse, I don’t want to give the impression that there is only one story behind people’s overwhelming experiences. You’re right – there are (unfortunately) a multitude of ways that people can be hurt, intimidated, terrorised, isolated and vilified. Abusers are particularly skilled at doing this – their stakes are high and they need to try to guarantee silence. Having met so many people who have found ways of speaking up, though, I’m always warmed by the knowledge that such tactics don’t work 100%. People do find ways of speaking up and seeing through it. It can take time and support, but it’s possible (remembering that helps me remember that abusers are not as all powerful as they might have me believe).

    Also, probably worth mentioning that there are lots of other stories aside from abuse that a person can tell when they have the space/time/opportunity to tell it. I’ve met people who’s story involves moving from country to country and never feeling at home, others that involve loss/bereavement, others that involves growing up in an environment/community that excludes them. There are others who have gifts and abilities that enable them to see things differently … whatever the story, the important thing is that it’s ours and we are the ones who get to write it.

    Warm thoughts, Rai

  • Hi, Thanks for sharing. I’m very sorry that your child was abused and – from the sounds of it – that your understandable distress (distress doesn’t feel the right word – I’m guessing anger, horror … huge emotions) at its cover up was labelled as ‘ill’. I can’t imagine what you have been through.

    Here’s to helping us all reclaim our own ‘maps’ and finding places where our experiences, feelings and reactions can be heard and understood.

    Much warmth, Rai

  • Hi, thanks for clarifying – that was really helpful. From your first comment it felt like you were suggesting that I had a demon inside me (hence me reiterating that my story is mine to tell, not someone else’s to impose upon). Your lived experience, and your story, are yours. The more we can – as a society – stop stamping over other people’s stories the better.

    With warmth, Rai

  • Hi, thanks for taking the time to read and share your perspective. Whilst I know I talked about feeling I had a monster/alien inside me, and how I felt like I was wearing a mask, but the point of my post was that it is for the person themselves to write their own story (not for other people to impose their beliefs and ideas upon them). For me, my experiences were nothing to do with demons, they were understandable responses to – and expressions of – trauma. As I mentioned above, the problem existed within society as a whole – not within me as an individual.

    Given that I was abused by a religious leader (and pillar of the community), I sometimes do have a reaction to people talking about Jesus. This doesn’t mean I have a demon inside me – it just means that I was traumatised in the context of organised religion. There are lots of different stories people can tell about experiences. Some of these involve trauma, some religion, some spirituality, some biology, some adversity and exclusion. What I’m calling for here is space for people to find their own story instead of having one imposed upon them.