Stigma in advocacy, study, work, social spaces

[Fredd50]

Hi,

I was hoping to open up a space to talk about stigma in advocacy, work, social spaces.

Dealing with Psychosocial Disability (mental health difficulties) sometimes feels like a never-ending battle to try and find safety and acceptance.

Sometimes for me, I find that even in advocacy spaces where people are trying to create inclusivity, there's an unwritten code I don't know how to follow, or I can't.

If I get it wrong I always hope people will treat me the way I would treat them and try to find a solution that helps everyone but the end result always seems to be that I end up being excluded until I can crack the "code" and somehow fit in or male my Disability evaporate.

It's a bit perplexing. I understand that people all want to feel comfortable and secure, but it confuses me and leaves me feeling a bit uncomfortable because I know I'm far from the only person who ends up being left out for not being able to fit in.

I'm wondering if other people have any expenses of stigma and discrimination and what they would find helpful in addressing these sorts of things to make things more inclusive for people to have a voice in the policies and cultures that affect them.

What does it look like to have communities, work environment, social spaces and advocacy spaces that are inclusive of diverse people experiencing Psychosocial Disabilities (mental health issues)?

[chibam]

This sounds like a really great idea! I hope it takes off!

I got in such a twist about this earlier this year. Mostly because everytime I see that word - "psychosocial" - it's definition seems to have changed. I was interested in making a submission to the Royal Inquiry into abuse of disabled people about "psychosocial disabilities" and descrimination, but I ultimately interpreted the language to mean that what I wanted to talk about wasn't considdered "psychosocial disability".

So I'm not sure if my experiances would be of interest to you, but yes, I have experianced persecution/descrimination and defamation, and they've all had a significant bearing on my desire to end my life. I wasn't persecuted because I have a mental health issue (I don't have a mental illness) - I am suicidal in large part because of the persecution I've endured; especially in terms of the destructive effect that persecution has had upon my opportunities for a better life. When everybody has been told to see you as a loser, it is all but impossible to find anyone who will help you.

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@Fredd50 wrote:

Sometimes for me, I find that even in advocacy spaces where people are trying to create inclusivity, there's an unwritten code I don't know how to follow, or I can't.

If I get it wrong I always hope people will treat me the way I would treat them and try to find a solution that helps everyone but the end result always seems to be that I end up being excluded until I can crack the "code" and somehow fit in or male my Disability evaporate.

It's a bit perplexing. I understand that people all want to feel comfortable and secure, but it confuses me and leaves me feeling a bit uncomfortable because I know I'm far from the only person who ends up being left out for not being able to fit in.

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I can relate to this very much. I'm increasingly realizing that I just don't get people. I don't know what they want. I don't understand the rules of their game. I don't know how to play the social game to negotiate for assistance, or anything that would make engaging with others worth my while, for that matter.

TBH, I think that pursuing "inclusivity" is a dead-end road, and what we should really be pursuing is to transplant people (consentually, of course) into their own like-minded environments, so we can all be surrounded by people who truly get us and can relate to us. This is what I want for myself. I'm not interested in perpetually play-acting a part to fit in with a culture that is totally incomprehensable to me; nor do I want the people around me to "tollerate/accept" me politely out of obligation/social pressure, rather then genuine appreciation and attraction towards me. I don't want to be a burden that other people are obliged to silently and politely endure, as many others have been to me. I want my presence in the lives of others to be a decisively positive one.

I'm fine with having "inclusive" environments as temporary waypoints for people to stop at on their way home. But this idea of creating a permanent environment where people will live out their entire lives surrounded by deeply incompatable beings in peace and harmony and mutual satisfaction just won't fly, IMHO.

[TideisTurning]

Stigma's a tricky one @Fredd50, and especially when you're experiencing stigma yourself, because there can be a lot of emotion involved that it can be difficult to take yourself out of or away from. I think for me, what helps is having people willing to help me through those experiences or even help advocate on my behalf or be there to support me in a situation if I'm too stuck in the emotion. I feel like something that's a really important protective factor is understanding, or a willingness to try to understand. I've known someone who is very critical of the tiniest things they might do that could perpetuate stigma or discrimination, but as far as I'm concerned, they are a huge ally because they are very aware of their potential to perpetuate stigma and discrimination and they continue to be curious and ask questions whenever there's something they don't know or they want to try to do better.  

[Fredd50]

Hi @chibam 

Sorry it took me so long to get back to you.

I've been a bit overwhelmed trying to work through my trauma.

I can really relate to a lot of what you're saying.

It is important to find like minded people.

I also felt really persecuted for a long time.

I was reported by my neighbours a lot and locked up in psychiatric hospital where I never felt helped or understood, just terrified.

The royal commission really let is down by justifying restrictive practices (which the official CRPD guidance makes clear are a human rights abuse and need to stop) and not letting people testify about psychotropics on the "medicine harms" hearing.

I've struggled a lot trying to understand other people too.

Lately I've been studying law and reading some of the things written in law reform submissions and reports.

I've been reading about trauma models and medical models and trying to understand why the medical model is so concerned with medications and doesn't understand trauma.

I think what I've been learning is that it's all about different points of view.

People know what they are familiar with, and what is normal to them.

In my case I was what gets called "psychotic" a lot of times and they said I had "bipolar".

For a long time it didn't make sense to me why they wanted to classify what I looked like on the outside instead of understanding what I was reacting to in the world around me.

Since I've been starting trauma therapy it's given me more understanding about how I'm reacting.

Since I've been working through how other people experienced some of the things I've worked through from their point of view, it's helped me understand them better.

I don't agree still, with some of the ways they are looking at things, but it makes more sense to me.

I've been learning about myself and how I can heal the traumatised parts of me.

I've been learning about how I can explain different ways to understand my experience to people who look at it from the medical model perspective.

I'm feeling less persecuted and poorly understood.

Partly that's also down to learning who I want to talk to and who I don't.

But a big part of it has been learning to heal my pain and understanding it.

And connection with a trauma counselor who feels safe to me.

I've gone through a couple of times of feeling like he isn't safe and misunderstood me. But then I realised it was a mix of things.

He promised to try and understand more about how traumatising it was for me to be under the power of others and I realised that the angry part of me wasn't "me" but a traumatised part of me that needed to heal.

Everyone is different, but from my perspective, the hope I have is that there will come to be better understanding of different support and therapy options so they will become more available and people can choose them instead of being forced into the medical model as the only choice

"Psychosocial Disability" isn't a term that has a strict definition. The Convention on the Rights of Persons with Disabilities deliberately doesn't define "Disability" because it recognises it's an evolving construct.

Even if you don't identify with having a mental illness (I don't either, and a growing number of people don't) then you can still report what's happened to you to the Royal Commission.

I think it's great when people form like minded groups and can develop their ideas in them.

But eventually, there needs to be wider social change so everyone can get access to education, and meaningful participation in society without being persecuted.

Nobody should have to go through that. I'm really sorry to hear that you have (too).

[chibam]

@Fredd50 

I, too, have heard a fair bit about "medical models" and "trauma models", and IMHO, even between them there is a lot of uncovered ground. For all their differances, they seem to share an underlying focus that "there's something wrong with the patient". Whether that "something wrong" was put there by biological causes or trauma, well that's where they disagree. But they both focus on the patient.

We need a model that focusses more on the patient's life circumstances, too. A system that's willing to considder that the problem that needs to be fixed is with the patient's life, and fixes it's attention there, instead of trying to 'fix' a patient who has nothing personally wrong with them.

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@Fredd50 wrote:

I've been reading about trauma models and medical models and trying to understand why the medical model is so concerned with medications and doesn't understand trauma.

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If you want to know why the "medical model" is so obsessed with medication, then this video would be a great starting point for you, IMHO: https://www.youtube.com/watch?v=tgilBaRbulc

The short answer is: money. The kingpins of the mental health industry are almost entirely in the pocket of the drug companies, as the video explains.

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@Fredd50 wrote:

"Psychosocial Disability" isn't a term that has a strict definition. The Convention on the Rights of Persons with Disabilities deliberately doesn't define "Disability" because it recognises it's an evolving construct.

Even if you don't identify with having a mental illness (I don't either, and a growing number of people don't) then you can still report what's happened to you to the Royal Commission.

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That ambiguity is really frustrating, though, to people like myself who can see, hear & speak, and have full usage of their arms, legs, ect. Because you feel like a world-class heel lodging complaints to an inquiry set up to tend to disabled people; it's like "I'm not disabled - I have no business being here!" Frankly, I feel about as comfortable reporting my grievances to a disability inquiriy as I would parking in a disabled car space - it's not for me, it's for people less fortunate then me, you know?

It's only that someone I know online was very insistant that my sort of ordeal did indeed qualify for considderation by the inquiry that prompted me to email the inquiry staff and ask whether or not my ordeal was relevant to them. To my surprise, they told me it was.

That being said, they've put out several "Issues Papers" with requests for input on a particular set of criteria and, in my reading of those criteria, I find that my commentary doesn't seem to apply. The only way it applies is if you start radically redefining criteria, and once you start doing that, what hope is there for having an orderly inquiry that stays on point? e.g. My persecution had nothing whatsoever to do with any sort of disability - unless you redefine 'unpopularity' as a disability.

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@Fredd50 wrote:

I think it's great when people form like minded groups and can develop their ideas in them.

But eventually, there needs to be wider social change so everyone can get access to education, and meaningful participation in society without being persecuted.

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But the essential factor in having meaningful participation in society is that you need to be within a society that wants to go to the same place that you want to go; or maintain a way of life that you wish to maintain. Until people are assigned to community/societal clusters who's communal values and ambitions are in-line with their own, meaningful social participation for all will always be a pipe dream.

[Fredd50]

I feel your frustrations @chibam.
Very familiar with Paula caplan's talk
The "Psychosocial Disability" idea makes a lot more sense in the context of the Disability rights movement.
The term belongs to the social model of Disability which explictly acknowledges that Disability is not a problem within the individual but that person's are subject to social forces which can be discriminatory and disabling.
It's just a construction. It was adopted by people seeking rights because it gave them allies in the wider Disability movement
It's not saying that there is something wrong with the person.
But that they've encountered circumstances that are effectively disabling.
Because some people with physical (and sometimes Psychosocial)
The social model originally applied to all Disability. The example often given was that being in a wheelchair wouldn't be an impediment in a world where everything was made for wheelchairs but because the world was made for a certain, specific narrow type of person others were excluded and this was disabling. Then some with Disabilities also felt that there was an impairment that would cause them difficulties even if society was completely set up to do as much as it could for them so the rights based model of Disability was set up not to be specifically defined as the idea of Disability was an evolving construct so they acknowledged it may have something to do with impairment and something to do with social circumstances or a nexus of both.

The Royal commission doesn't really get the Disability rights movement. Which is all about the *very diverse* people with Disabilities standing in solidarity with each other to recognise and respect one another's experience and perspective and not be defined by others and have policy and constructs set for them by others.

Central to the UN guidance on the convention on the rights of persons with Disabilities are the principles of autonomy, diversity, will and preferences with no undue influence or pressure, including manipulation, domination or deprivation of options.

We are all different, us humans, we are different in terms of our life experiences, how we relate to those and how we make sense of them

What one person finds helpful might be completely unhelpful to another and vice versa.

So if the commission were being true to its aims, which were fought for by Disability advocates who were true to the principles of solidarity, autonomy, diversity, will & preferences and self determination, it would be a place you could report to and be understood and respected for conceptualisation of your experiences purely as an inevitable response to the social circumstances you were subjected to.

I personally have found the trauma model helpful because I don't think it is saying there's something wrong with me.

It's recognising that I've experienced relational trauma and that has affected the way I think, feel and respond.

It's helping me to feel more safe in the world and that's helping me to break out of the vicious cycles I've been trapped in for many years.

It's saying that while my reactions to what gay are very understandable, I don't have to be stuck in the suffering of them.

I do need help overcoming the external situations that I'm left with but I'm in a much better position to do that with help calming myself down and learning not to react.

But each to their own. I did have to say to my trauma counselor that there were some situations that were genuinely unsafe for me, not just ones that felt unsafe - like dealing with public sector Psychiatry, especially after just being through what gets called "psychosis'.

I was genuinely mad, it was horrible. I needed to get some understanding of how to not fall into those patterns and the trauma model has been helping me with that. Helping me take a step back and see the situation without getting tied up with overwhelming fear, overwhelming feelings of hurt turned against myself, overwhelming anger that all coloured my vision and led me to bad places in my mind that then led me to places where I was mistreated and traumatised all over again.

It's helping me break the cycle and I'm very grateful for that.

I know there is a lot of injustice and there is a lot of influence from drug companies

But everyday Psychiatry in the public sector doesn't know that. It suffers more from the "echo chamber" effect, from "beaurocratic inertia" and from being placed in a position of being expected to be the "expert" on whether or not someone is going to act up and nit be able to take responsibility for their own choices.

I don't like the way it is approached and I don't think it's fair.

There have been acknowledgement of this in the Australian Law Reform Commission's looking at the "insanity" defense. But where I am, in Tasmania, the Tasmanian Law Reform Commission looked at it in terms of "contemporary medical understanding' which is disappointing.

I'm starting to study law and learning that things change slowly.

I don't think that's a good thing. But I accept it as the way things are right now.

Because the people I know who have been harmed by the system need the ability and the opportunity to heal from what has hurt them and that's the most important thing.

I do thing that the system absolutely needs to change and understanding the different needs that people have, especially to be free of discrimination, mistreatment and able to make sense of their own experiences their own way is very important.

Change is slowly happening. But it happens when the community understands better.

To be in the best place to be part of that I need to be in a good place with myself

If I'm constantly buffeted around by very strong painful emotions, I can't do that. So the trauma model is helping me build tools to calm those emotions down and use my reason instead.

That's why I like it

Of course it's also very important to be in a safe place socially.

But feeling better and being able to calmly accept things as they are, helps me know what I can get away from or what I can learn not to react to. So it gives me more personal power.

It helps me feel more in control.

I'm still learning it, it takes time and it's very raw, but I'm getting there day by day

There isn't anything "wrong with me" but I have suffered and I don't want to keep on suffering forever.

I completely respect where you are coming from.

Each of us needs to be respected in what makes sense to us.

The Disability commission is a mess and it's already let us down by justifying restrictive practices (directly against UN guidance from both committee against torture and committee on the rights of persons with Disabilities,and even against human rights training from the World Health organisation issued in 2019, which is a big step forward because they were slow I'm coming on board)

It also stopped people from testifying about Psychotropics at the medicines harm hearing.

Even though the federal government currently has an inquest into the link between antidepressants and youth suicide after Griffith University raised concerns about a strong correlation.

These things are genuine injustice, but when I allowed myself to be so emotionally involved that I was constantly reacting and anguished (I couldn't stop shouting all day on the phone to the royal commission, the phone staff have acknowledged that the commission messed up but keeps getting busy with other things and never calls back to sort it out)

I found it just undid me. I ended up spiralling, I was do desperate to change things that were much bigger than myself that a lot of unresolved other things that hurt and were unjust that I really didn't have much control over as an Individual came up and instead of recogny where I had to accept things as they were even if they were not just (not that I couldn't try to be part of Change but that I couldn't destroy myself thinking I could change it)
I ended up losing my mind and ended up right back in the Psychiatric ward.

Looking back I had been constay angry for years and had destroyed my life and opportunities.

I decided I wanted to stabilise myself, first and foremost, because I couldn't do anything about big world problems except to work with others as part of the solution.

To do that I had to be strong and take care of myself

I can't do that all alone so I've been really grateful for support

I have to pick and choose carefully.

I understand the choice is different for everyone, which is why I'm really interested in the idea of solidarity between different people who have different needs or find different things helpful.

I am still hoping to report to the royal commission even though I know they might not understand my experiences and might filter them through the wrong lens.

But I might not be able to not because I'm not eligible but just because It's retraumatising to keep reliving them and I really want to heal.

I'm hoping that things will change as these conversations keep happening and that people do form spaces and organisations that respect that there isn't anything wrong with people who experience distress or suicidality or even what gets called "psychosis" or "mania" that it does all make sense in context, in lots of different ways to different people, but that it can all heal, also in different ways for different people.

Things are changing, slowly. When I first started on these forums, they wouldn't let me talk about these sorts of things and even deleted posts letting people know they could testify to the royal commission.

Sometimes it's just a slow raising of consciousness/awareness that helps people understand what people have been through that has hurt or helped them, and that we do need recognition that we didn't just "go wrong" we were harmed by others, then harmed and blamed for being hurt by it.

And to heal from that we need kindness and understanding.

One of the first things my trauma counselor from the Disability royal commission program said to me was "I just see a person who has had a lot she wasn't allowed to say" it's true, that meant a lot to me to have someone who listened and understood what had really been done to me or how bad it was.

I really hope you find that too. You deserve it. Everyone does.

My counselor doesn't push the trauma model. He just offers to do what I find helpful.

I asked for it because I needed some published papers to justify to the public Psychiatrists that I was not using an "incomply model" to understand and work through my experience. They like published papers in reputable journals, it's how they think.

Some call that "epistemic violence" and I don't disagree. But I also just see it's tradition, habit, entrenchment. They don't mean to do harm, they don't realise they are doing harm.

That used to infuriate me but I couldn't take being infuriated anymore, so I just hope things will change as more people talk about different things. Some of the younger ones and the more thoughtful ones were willing to listen.

Some people talk about just going around Psychiatry. Some talk about reforming it. Some talk about escaping it.

All of these things are valid.

I don't think it should have the power that it has and it's not helpful

But today, in my state, people who I know are well meaning are still entrenched. So I just have to stay clear of them.

That's just the way it is.
One day it will change, I hope.

In the meantime, I hope that people do find ways to get what they need to. To be heard. To be understood. To be respected ♥️

[chibam]

Hi @Fredd50 .

That was a big post, so I won't be able to respond to all of it - at least not right now.

I still think that the vagueness of the definition of "disability" is problematic; particularly when your trying to run an inquiry designed to understand the specific and unique hardships suffered by disabled people which need unique, targeted attention, as opposed to the hardships faced by non-disabled people who are merely oppressed, persecuted or descriminated against.

I mean, are there any limits to what we are prepared to considder a "disability"? If not, then what's to stop the inquiry being flooded by everyone who has a less-then-ideal life in any way, shape, or form, and drowning out the voices of actual disabled people who have very unique disability-related problems that need attention?

I'm not saying that people with problems shouldn't get government attention for their woes, but if your gonna have an inquiry for the woes of the disabled, it should remain an inquiry for the woes of the disabled.

I'm sorry to hear about the suffering you've endured in trying to engage with this inquiry. I hope things are better now.

I'll leave it there for now. As I said, it's a long post, so I can't reply to it all at once. Maybe later.

Be well. And Happy New Year!