I went to the Sunshine Coast 2nd round consultation in regards to the QLD Mental Health Advisory Committee the other day. What a ride that became...
I sat down at the back, because with a two hour session, I knew I would have to get up and stretch, or I wouldn't be able to walk back to the car with my joints lol... They started off - three people from the government, a guy, a typing lady, and a carer representative. Then the room started to fill, and I watched them all - they knew each other, and they had "work clothes" on... I was the only consumer in the room. Great.
As the Government guy started talking, I tried really hard to just listen and tweet. And I did tweet, and I did listen. And a couple of times, my mouth got the better of me, and I mumbled some things under my breath. From the giggles of the guy next to me, my sentiments were obviously shared though.
Government guy (you guys know I have a BAD memory yeah?) - he started showing some slides. He got through the preliminary ones before getting on to the recommendation ones, and I'd like to be able to say that we actually saw the recommendation ones, and that we talked about the recommendations, but we didn't. We got stuck on the preliminary ones. Because the last preliminary one talked about the Mental Health Advisory Committee being "independent". And the room full of QLD Health employees and NGO's and NFP's ... well, they just started bitching. And didn't stop. About funding. And control. And who would have funding and control.
A couple of times, I spoke up - sometimes to back up the government, and sometimes not. One time to dispel the myth that drugs and alcohol gets a better rap (stigma) than mental health (so so so not true). And then I got the shits. Then I wanted to have my say, and I put my hand up, and I spoke.
The thing, and this is important to know - I wasn't nervous. I was calm. I knew what I wanted to say, almost word for word. I had a plan. My heart was steady, and my hands were calm. I was confident. I was in control. And I spoke.
For about four or five sentences. And here was my mistake - I looked at the people. I looked at this group of people fighting for the rights of mental health consumers and here is what I saw... two or three looks of respect. Two or three looks of pity. And the rest could only be described as looks of contempt. "Who the fuck is this girl, who thinks she knows anything?" is what I saw in the rest of those faces.
And then I just couldn't get the words out. I faltered, and I stopped talking. I didn't finish what I so desperately needed to say. Although, while they continued to hash out the money and power crap, I figured that not one of them would have listened anyway. They didn't care about consumers. One woman spoke of "participants" during the whole two hours, and when I thanked her for it afterwards, I used the term "consumer" and was lightly reprimanded. Well, sweetheart - first of all - who gives a fuck, and second of all - I will self-identify any damn way that pleases me. And I say that the way that I say it because when she spoke of "participants", it was this:
"We are the ones who have to face participants and explain to them that there are no services available."
I know... good right? Great, especially considering the context of the day... But then she fucks it up...
"And we are the ones who have to deal with that. We are the ones who have to ..."
Umm...??? Excuse the fuck out of me, but aren't consumers, oh, I mean, participants, the ones who have to deal with that??? This is a public forum, not a staff meeting.
When the meeting finished, I looked around and thought "what's the point?" I just couldn't imagine how the hell consumers have any chance when people are just worried about their jobs and their funding and their "turf". If it had been a meeting FOR staff alone, then yeah, I get it. But it wasn't - it was a public forum. There's a time and place, and this wasn't it. Not for the whole two hours anyway.
I went to my car, trying hard not to cry, and I drove away, soon bawling my eyes out. I'm just me... I don't know what to do next, or how to fix this problem. I get why they feel the way they do, and I know there's an answer, but I'm not about to get sworn in as Premier, so what the fuck can I do? Apart from cry like a girl, which I did quite well.
Until I was about ten minutes away. And then I thought - NO! FUCK NO! I am not going down that easy. So I turned the car around and I went back. I was hoping to catch the government troop, and I did, just as they were leaving. And they were lovely lovely people. Of course, maybe they were just yanking my chain, but if so, they were really good at it :)
And they let me talk. We talked about why consumers don't turn up, and I told them that consumers don't know about it. They told me that they have given NGO's and NFP's all the information to pass on, and I said that not everyone is using these services, and even if they are, it doesn't mean that the organisations are passing the information on. And even if they are, that generally speaking, consumers don't trust them - at least, not like that. That lady I spoke of - she told me that no "participants" wanted to come even though she had told them, and I straight away thought, well, if you told them like that, no fucking wonder. Did you offer to help them get here, or tell them they didn't have to say anything, or find out why? Did you give them the tools and space to be comfortable with the idea? Or did you just ask?
And we talked about my finding out how to get more consumers to participate. Because at the moment from the sounds of it, less than 5% of the voice for this Committee are consumers. And that has got to change. I simply don't believe for a second that people don't want to have a say. I believe that there are obstacles, and I want to find out what they are, and how to get around them, but I don't believe that people don't want to have their say. Mental illness affects every single fucking aspect of your life, so this shit is important. And people with a mental illness aren't stupid. They're treated as though they're stupid, but they're not.
This meeting made it clear to me that this is all fucked up. The government is effectively asking NGO's and NFP's and state employees what consumers need. And they are telling the government what consumers need. What we need is a system where consumers tell the government what they need, and then the government asks the NGO's and NFP's how the fuck they're going to provide it. And quite honestly, I think that the government guys I talked to would actually be willing to do this if they knew how. So I'm going to try and help them with that.
For the record:
* The government guys told me that this was the most "focused on one topic" group they had seen. They said they were surprised and saddened that not more consumers turned up. I told them that I was glad no other consumers turned up, because listening to that shit was truly horrifying.
* Not all NGO's and NFP's are like this. And quite honestly, I don't think all these guys would be like this all the time either. I think it was one or two who lead the pack, and the rest followed.
* One person stated that as an employee of an NGO, they couldn't speak freely. The same was said of the government. And I'm wondering - What the fuck? Why not? What's the point of this, if it's not transparent? Why are we giving tax payer money to NGO's if they are not transparent? There's a whole lot of wrong there...
* The government guys treated me with respect. And I respect them for it, and I thank them for it. I left there, the second time, on a total high, because they listened to me. I don't know if they agreed with me, and I really don't care - they listened, and quite frankly, sometimes that is enough. On a personal level. ;-) On an advocacy level... well that's a whole other story :-)
So my plan now is to work out why consumers don't speak up, and how to fix it. Stay tuned...
Showing posts with label Advocacy. Show all posts
Showing posts with label Advocacy. Show all posts
Monday, February 20, 2012
Friday, February 3, 2012
Stigma - how much coming out is too much?
In an article today, on stigma in relation to mental illness, Glenn Mitchell writes that:
Here's what...
* Teenagers are bullied to the point that they attempt suicide.
* People of all ages find that family and friends stop talking to them, bitch about them, and sometimes openly ridicule them.
* People lose their jobs.
* People have their property vandalised.
* People in small communities find that complete strangers know who they are. They know this, because the complete strangers look scared when they meet in the street. This particular example is that of a fifteen year old boy whose own mother refused to talk to him.
* Physical abuse.
* Sexual abuse.
* Emotional abuse.
I've talked to a lot of people that have a mental illness, and I've talked to them in places that most don't want to admit exist - this shit happens to people when people find out.
That's what Glenn. That's what.
Look - I get that we need to break down stigma. That has to be one of our top priorities. However, not everyone has the open family and the understanding friends - and encouraging those that don't to speak out to their family and friends is irresponsible. Because some kid is going to read that story and believe you because they desperately want to believe it's true, even if in their heart they know it's not. They are going to want to believe it's true, and they are going to speak up, and they are going to suffer the consequences, and we are going to lose them!
So how about this, for now... How about, for now, we encourage people to speak to someone they trust. Let's not pretend that everyone is going to be understanding. My family isn't. They don't want to speak to me. And quite frankly, I don't care. For me, this article is correct - so what if I lose a family that was never there in the first place? But I'm not a fifteen year old kid about to get the crap beaten out of him to "toughen him up". So can we please assume that fifteen year old kids with deadbeat family are going to read this, and tell them to speak to someone they trust. Maybe it's a family member. Maybe it's a teacher. Maybe it's their doctor. Maybe it's a friend. And then they can make a judgement call on whether or not to tell people in general.
I would love to live in some Utopia where we can all just be fucking honest about who we are. We don't. We live in a world that will kick us when we're down, and being honest and finding out your family and friends are the ones who will do the kicking - that's a fucking shitty way to learn that particular life lesson.
There are people who can speak out without severe repercussions - and they should. That is why I do. I can now. Let's not forget our brothers and sisters who can't speak out. Let's not tell them that it's safe to do so until it fucking well IS safe to do so.
So in closing - my advice on "coming out"...
Do what you think is best for you. Look after yourself first. If you can, find someone you trust. If you can, get some help. Talking about it IS important and I'm not trying to say it's not. I'm just saying - only speak up if it's safe to do so.
Glenn was right - the more people that help, the better chance you have of recovery. That is dead set true. We just need to lose the assumption that the people around us are the ones that will provide that.
"I do think provision of mental health services is a big problem in regional Australia but in small communities I think some people just feel that there's a bit of a stigma that if I let my best friend or my girl friend know about it that everyone is going to find out about it, but I still have the thought process that so what if everyone finds out," he said.So what if everyone finds out?
Here's what...
* Teenagers are bullied to the point that they attempt suicide.
* People of all ages find that family and friends stop talking to them, bitch about them, and sometimes openly ridicule them.
* People lose their jobs.
* People have their property vandalised.
* People in small communities find that complete strangers know who they are. They know this, because the complete strangers look scared when they meet in the street. This particular example is that of a fifteen year old boy whose own mother refused to talk to him.
* Physical abuse.
* Sexual abuse.
* Emotional abuse.
I've talked to a lot of people that have a mental illness, and I've talked to them in places that most don't want to admit exist - this shit happens to people when people find out.
That's what Glenn. That's what.
Look - I get that we need to break down stigma. That has to be one of our top priorities. However, not everyone has the open family and the understanding friends - and encouraging those that don't to speak out to their family and friends is irresponsible. Because some kid is going to read that story and believe you because they desperately want to believe it's true, even if in their heart they know it's not. They are going to want to believe it's true, and they are going to speak up, and they are going to suffer the consequences, and we are going to lose them!
So how about this, for now... How about, for now, we encourage people to speak to someone they trust. Let's not pretend that everyone is going to be understanding. My family isn't. They don't want to speak to me. And quite frankly, I don't care. For me, this article is correct - so what if I lose a family that was never there in the first place? But I'm not a fifteen year old kid about to get the crap beaten out of him to "toughen him up". So can we please assume that fifteen year old kids with deadbeat family are going to read this, and tell them to speak to someone they trust. Maybe it's a family member. Maybe it's a teacher. Maybe it's their doctor. Maybe it's a friend. And then they can make a judgement call on whether or not to tell people in general.
I would love to live in some Utopia where we can all just be fucking honest about who we are. We don't. We live in a world that will kick us when we're down, and being honest and finding out your family and friends are the ones who will do the kicking - that's a fucking shitty way to learn that particular life lesson.
There are people who can speak out without severe repercussions - and they should. That is why I do. I can now. Let's not forget our brothers and sisters who can't speak out. Let's not tell them that it's safe to do so until it fucking well IS safe to do so.
So in closing - my advice on "coming out"...
Do what you think is best for you. Look after yourself first. If you can, find someone you trust. If you can, get some help. Talking about it IS important and I'm not trying to say it's not. I'm just saying - only speak up if it's safe to do so.
Glenn was right - the more people that help, the better chance you have of recovery. That is dead set true. We just need to lose the assumption that the people around us are the ones that will provide that.
Tuesday, January 31, 2012
31 Tweets to Mark Butler - revision :-)
Well, this is my last day of "31 tweets to Mark Butler". I've missed some days, and made up for it on others. I've written some heartfelt tweets, and some I've just made up out of desperation to complete my task. At the beginning, I had the chance to blog along with tweeting, however as I needed to be there for my family for various reasons, time alone to write became scarce (plus I had a few tummy bugs, the details of which you'll be glad I do not share).
I have had a few people join me on my quest to tweet every day for a month, and I thank them, for the journey (such as it was), was all the better for their company.
Here are my tweets to Mark Butler for the last 31 days. I am not overly proud of what I've accomplished, mainly for my obvious lack of literary skills, however I set myself a challenge, and did my best to meet it without giving up. Which is a hard thing to do, especially given that there is neither feedback, nor any apparent effect from my efforts. Still - I have to do "something" - I have to "try". I don't want to look back in five years time and think "oh, I should have done that. If only I wasn't so scared". I'm proud for not being scared. I'm proud for trying. I'm proud for trying something, instead of falsely assuming the world will right itself without my help or input.
@Mark_Butler_MP Welcome to 2012 :) Apologies - seems I made it this far after all *big grin* ... enjoy... http://lindamadhatter.blogspot.com/2012/01/31-tweets-to-mark-butler.html
@Mark_Butler_MP Here's a blog for day three! lindamadhatter.blogspot.com/2012/01/unexpe… #betteraccess #ruralmh #mentalhealth #31blogs
@Mark_Butler_MP I'm tired today, so a standard "bite me" will have to suffice :-D #betteraccess #ruralMH #31blogs
@mark_butler_mp Hope you've had a good weekend. Many haven't - stressed over having to ration #betteraccess sessions for the next year!
@Mark_Butler_MP #betteraccess - Just in case you've forgotten :-P I did a blog, but it's not all that relevant to BA - it was about floods.
@Mark_Butler_MP - I am a person, and I paint lindamadhatter.blogspot.com.au/2012/01/i-pain… #betteraccess #ruralMH
@Mark_Butler_MP Tweet 11 - Did a blog, but it's not a BA one. Had too good a day and don't want to spoil my mood thinking about BA future!
@Mark_Butler_MP #BetterAccess provides people with the right help at the right time - and not according to bureaucracy or "boxes" per se.
@Mark_Butler_MP I'm hoping this wasn't an intentional effect... and I hope that people are OK :( australiandoctor.com.au/news/fall-in-g… #betteraccess
@Mark_Butler_MP Day 13 blog for you - why your rhetoric is bullshit ;-) lindamadhatter.blogspot.com/2012/01/why-i-… #betteraccess #ruralmh #mentalhealth
@Mark_Butler_MP Found out that my MI has cost me relationship with my extended family. #betteraccess can help others not exp this situation.
@Mark_Butler_MP Will ATAPS provide specialist counseling to new and old migrants to Oz? #betteraccess can!!!
@Mark_Butler_MP This week,2 young Aussies suicidal.1 received media attention.Other didn't.Headspace would only help 1-which 1 do u think?
@Mark_Butler_MP Cutting #betteraccess is bad for people. So do something about it, would you please?
@Mark_Butler_MP Just a reminder... In case you've forgotten :-) http://lindamadhatter.blogspot.com/2012/01/where-have-all-mental-health-services.html
@Mark_Butler_MP "Lessons" Sort of the beginning of how I came to be a current pain the arse :) http://lindamadhatter.blogspot.com/2012/01/lessons.html #betteraccess #ruralmh
@Mark_Butler_MP "Please do not underestimate the effects of #chronicpain on mental health." Geralyn Datz http://ow.ly/6taQz
I have had a few people join me on my quest to tweet every day for a month, and I thank them, for the journey (such as it was), was all the better for their company.
Here are my tweets to Mark Butler for the last 31 days. I am not overly proud of what I've accomplished, mainly for my obvious lack of literary skills, however I set myself a challenge, and did my best to meet it without giving up. Which is a hard thing to do, especially given that there is neither feedback, nor any apparent effect from my efforts. Still - I have to do "something" - I have to "try". I don't want to look back in five years time and think "oh, I should have done that. If only I wasn't so scared". I'm proud for not being scared. I'm proud for trying. I'm proud for trying something, instead of falsely assuming the world will right itself without my help or input.
Dear @Mark_Butler_MP Meet Nicholas. He's six. lindamadhatter.blogspot.com/2012/01/meet-n… #betteraccess #asd #aspie #ruralmh #mentalhealth #31blogs No. 2
Day Four. "Predictable". And with that - I'm off for some quality kid time :) Happy Wednesday Mark! http://lindamadhatter.blogspot.com/2012/01/predictable.html #betteraccess
Dear @Mark_Butler_MP - blog is a little late today. Hope you've had a good one. #betteraccess #31tweets #31blogs #ruralmh
This time with link lol Just in time for Day 5- e-Mental Health - friend or foe? @Mark_Butler_MP #betteraccess #ruralmh lindamadhatter.blogspot.com/2012/01/e-ment…
Mental health nurses and rural mental health. Your #7 blog @Mark_Butler_MP bit.ly/xgAVFr #betteraccess #ruralmh #mentalhealth
Hey @Mark_Butler_MP See the beautiful future of our mental health here... alternet.org/story/153747/t… #betteraccess c/- @bedlamfury
.@Mark_Butler_MP Oh there you go again... You know a really good way way of doing that? Stop discriminating in mental illness funding!
Dear @Mark_Butler_MP Sorry,but you shall henceforth be known to me in my head as "Meatloaf".It's just gonna stick.I apologise! #betteraccess
.@Mark_Butler_MP Time for your daily dose of me. Save #betteraccess and help get us back on our feet!
.@Mark_Butler_MP There's so much pain in the world. Do we really need to add to it by cutting #betteraccess ?
.@Mark_Butler_MP I believe in your ability to find a way to make it work. Australians need you to stand up for #betteraccess and #ruralMH
.@Mark_Butler_MP 87000 Australians discriminated against for having 'wrong' mental illness or living rurally #betteraccess #ruralmh
. @Mark_Butler_MP Politics should be about helping people, not organisations that have little interest in the people. #betteraccess #ruralmh
Everyone should have #betteraccess to mental health care that is right for their circumstances, not just some tokenism. @Mark_Butler_MP
. @Mark_Butler_MP Time for revision :) Hope you've had a good month :) lindamadhatter.blogspot.com.au/2012/01/31-twe…
31 Jan
31 Jan
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