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Mental Illness Issues

Brian's Story

Brian is an Aboriginal man and a member of the NUAA Board who cares deeply for his community.

I’ve watched my family die from substance use – there’s actually an average life span of 35 - 40 years in my family, especially among men. It made me realise how important harm reduction is and I want those tools in the hands of Aboriginal people.

My experiences inspired me to work as an Aboriginal Health Education Worker and I was proud to spend 10 years at a quality service. But by the time left, I had a book full of people who had passed on over the years. At least half of them were Aboriginal. Given that only 10 - 15% of the users we saw at the service were Aboriginal, this is an outrageous inequity. I was finding it harder and harder to deal with the deaths.

During this period, I was getting a lot of support from NUAA workers. They understood why I cared for my community so deeply and why each death hurt and reconnected me to the death of my own family members.

I eventually went to work at NUAA as a Peer Worker in a service out west. Working for NUAA was a wonderful experience and I developed some rich friendships. I felt so cared for there. Many services seem to focus on a medical and academic approach to drug use, but NUAA is all about people -- about compassion, understanding and respect. I have always felt valued by NUAA and never felt like I was different -- I was just part of the family.

When I realised I needed to work at something entirely different for a while and got a job outside of the Drug and Alcohol sector, a NUAA staff member suggested I join the Board to keep my connection. That reminded me that I could still be a useful, caring member of our community even though I was not working on the front line. And it meant a lot to me that another member of our community suggested it to me. She told me that she thought I would be a good Board member partly because she admired the work I had done over the years, but mostly because I was a warm and sensitive pathfinder, not just for Aboriginal people who used drugs but also for all people who used drugs. That made me feel wonderful not just about myself, but about the qualities valued by NUAA.

So I put my name forward and I attended the Annual General Meeting to speak up and say why I wanted to be a Board member and found myself elected. And every month I front up at the meetings and will continue to do so as long as I am needed.

For me, being a Board member is about finding a way to keep contributing to NUAA. This is such an important organisation because we “get it”. I’m on the Board to help keep NUAA safe and viable, to make sure we keep on getting it. I want to support NUAA’s work in the community even though I can’t work directly with the community at the moment.

But more specifically and more personally, it’s about that book I have that is full of people who used drugs who have passed on. It is always going to be with me. Being on the NUAA board is about not wanting anyone else to fill up a book of RIPs of people who use drugs.

Molly's Story

Molly is a NUAA staff member who also volunteers. She talks about being a peer, lateral violence and NUAA's inclusiveness policy.

I started working at NUAA a few years ago in a role that didn’t need peer status. At the time, I considered NUAA to be an organisation created specifically for people who inject drugs. I've been a drug user for over a decade, but the fact that I had never injected, combined with low self esteem that always makes me feel like I don't belong anywhere, made me think I wasn't a peer.

NUAA staff and supporters talk about what it means to be a peer constantly. Being a peer-driven organisation means that we define the term again and again in different contexts. The definition always lands somewhere in the ball-park of being the most inclusive, while having experience of the particular issue or lifestyle of drug choices that we're dealing with at the time. It's not as tedious as it sounds, and we do approach it with humour -- when it gets a bit intense we ask each other "How big is your peer-ness?' -- because apparently we are all children when it comes to jokes.

When NUAA started running DanceWize NSW last year, I was so excited about the program, but I was still a bit reluctant to join. Even though I'd been to festivals, doofs, and other celebrations of all things loose, it didn’t feel like I'd been to enough. Even though I've held the hands of plenty of friends while they've been sick off too much MDMA and I've had people sit with me for hours while I've had a bad acid trip, it felt like it wasn't enough. These young kids and their encyclopaedic knowledge of electronic dance music and intimate experiences with research psychedelics seemed intimidating as fuck.

Of course, they aren't. They are a lovely crew who genuinely value each other’s different experiences, level of knowledge, and skills. But that thought can creep up occasionally -- the idea that someone is a 'better' drug user than you. Whether it's the variety of substances, or how spiritual their experiences have been, or how Velvet Underground their habit, it's easy to feel inferior when comparing yourself to people.

The riskier flip side is feeling like you’re better than other people who use drugs. The reasons can be the same, and they come up again and again. Buying into the ice panic makes people who are mostly trippers feel superior, never blowing the last of your pay on blow makes more organised and well-off party people feel superior. Volunteering for DanceWize NSW, I butted up against this first hand.

We call this tendency to throw other marginalised people under the bus 'lateral violence'. It's violence, which includes blame and disparagement, done to people like ourselves, in the hope that we can earn some cookies from the powers that be, if only we can demonstrate that we aren't the bad ones -- those 'other' drug users are. This tendency doesn't live out there in the world though, tragically enough, it's inside us. I found it in myself when getting a bit mad at people who were getting too spangled at festivals. 'Spangled' is a term I learned from a punter at Dragon Dreaming, meaning 'well fucked', and it's a learning that I cherish almost as much as this -- the pride I had at never being as messy as some of the people at festivals was just a form of lateral violence. It's a way of excluding people, and it was the same process of exclusion that I was doing to myself when I first joined NUAA.

Fuck that. We are better, more capable, more colourful, more romantic, kinder and stronger together.

Abigail's Story

Abigail decided to go to NUAA's Consumer Academy and Stigma and Discrimination workshops because of bad treatment by a health professional.

Last August I experienced really bad treatment by a psychiatrist.

I had been severely assaulted in a domestic violence situation. It catapulted me into a mental health episode. I was drinking and taking a lot of drugs to try and block out some of the distress I felt. I did some crime and ended up on charges. It got to a point where I decided I didn’t want to live anymore. I gathered together a lot of oxy-contin and several bottles of alcohol.

Before I could follow through, my mother tried to get me some help. I had been in this emotional space before and she recognised the signs. On the previous occasion, I was assessed by a psychiatric team, diagnosed as psychotic and sent to a lock-up ward for 2 months. I came out with better mental health. Based on that experience, my mother thought it important that a psychiatrist assess me as soon as possible.

The appointment was a disaster. The psychiatrist did not look into my previous mental health history and didn’t even read any of my medical files from that hospital. He would not let me speak and would not listen to my mother who was trying to explain the situation. Instead he focused on my drug and alcohol use and my legal problems. He told me I was a junkie who needed to be put in jail, that I was just trying to use a “get out of jail free” card.

I had been completely shut down by this man. His report was based on stigma and discrimination and contained no mention of my mental health or domestic violence history.

My mother was so distraught that she had a mini-stroke when the police took me away in the paddy wagon. She ended up in Emergency and still has issues with facial palsy. I should have been in a mental health facility not a jail. That psychiatrist’s discrimination did not just affect me, it affected my whole family.

As for me, I ended up in Silverwater on his recommendation, still in a psychotic state. My mother fought for me and I was thankfully accepted by a rehab.

When I was in there, I saw a NUAA flyer in the hallway advertising a stigma and discrimination project. My experience was still very raw so I rang the NUAA worker.  Once I was out of rehab, we met up to talk about what training was on offer.

I ended up at a Consumer Academy course. It was fantastic. I felt very comfortable there. After being so rudely shut down, I was given my voice back. I wanted to express my views and share my experience. I was interested to hear about other people’s experiences of discrimination limiting their access to services. The trainers’ stories were so inspiring I felt empowered. I really want to become a Peer Support Worker and stand up for my community.

After that course, I attended a specific Stigma and Discrimination Workshop. That was amazing both for the opportunity to share my story and in terms of getting fired up to support others. It makes me so angry that so many people who use drugs are looking for help and support but are not able to access services because of discrimination.

One thing I learned at the Stigma and Discrimination Workshop was that people judge us because they don’t really understand. I know how that feels.

I also learned that we don’t have to put up with it. I now know how it feels to be inspired to fight for my rights and I am working on a formal complaint against that psychiatrist right now. I hope sharing my experience of discrimination will inspire others to stand up for their rights.

I thoroughly recommend NUAA training. I feel supported by my community and I believe that I can support others too. I can’t wait to do more workshops.

Anastasia's Story

Anastasia attended a two-day workshop of the Consumer Academy in MT Druitt early this year. UN asked her: What did you get out if it?

I am a proud participant of NUAA’s Consumer Academy Workshops.

The main thing I took away from the workshops was the exciting idea that I could be useful, that as a person with a lived experience of drug use, I have value.

When the workshops started, we all introduced ourselves and I was blown away that the NUAA facilitators could be open about drug use and talk about using without it being a shameful thing. That’s a new thing! I so often tell people what they want to hear, to avoid stigma or legal consequences. It was so great to be able to relax in a room of people who have a lived experience of drug use and be honest and let go of the shame for a while.

The workshops covered topics including What is a Peer, Consumer Engagement, the Power of the Narrative and how we can use our stories to connect with people, Advocacy and more. We talked about the sorts of things peer workers do and what we bring that is different from what other workers bring.

As I get older, I feel like I have been getting more marginalised as one brick wall goes up here, another there. As I lose contact with another relative, lose another job or stop seeing another doctor because of discrimination, I get further and further removed from society. You get it in your head that you are useless.

It was wonderful to be given the tools to turn that on its head, to be told that my story could create change and that there is a job where talking about my experience using drugs is helpful. I was amazed by the idea that I could be welcomed because I use drugs, not in spite of it or because I have kept that dark.

The workshop helped me focus on the skills I can bring to the table. I forget that I have any sometimes, but my using taught me things like persistence, flexibility and negotiation skills. I also have all sorts of skills gained from jobs, sports, hobbies and relationships. I have personal qualities to add into the mix as well.

It was really heartening to know that those things I thought went against me – my using experience, jail, all that stuff – can actually be of benefit to others.

I spent two days at the NUAA workshops with a great bunch of people who were as enthusiastic as me. It is always good to meet new people that share similar ideas and values.

If I can add value to someone else’s life, then I want to do that. If I can influence someone to stand up for themselves and to let go of the shame of using, then I want to be there.

Danielle's Story

Danielle was referred to the Women's Wellbeing Group by he psychiatrist. She now volunteers at NUAA but still attends the group.

When I say that I only feel comfortable with drugs in my system, I know the other women who attend the NUAA Women’s Well-being Group know exactly what I mean.

More than that, they are there to help me get beyond that, to build my self-confidence. This world is full of people who put you down, so you feel you can’t fulfil what you want in life. It’s amazing to find people who want you to feel good about yourself, to have goals and reach them.

At the women’s group, I am with women who get what I am trying to say, and respect my experiences and opinions. Because of that, I’ve been able to open up about things that bother me.

I started using at 17, had hep C by 18, and by 21 I was pregnant and on methadone, with my partner providing top-up. I was on and off methadone for several years and this last time, I’ve been on a program for 13 years. I’ve spent time in jail. I currently use ice and opioids.

There are people who would judge me based on that info. I’ve been lucky enough to find people who understand it and even respect it. They know that I can have that history and still care about my health and want to be the best person I can be. They know, because they share a lot of those experiences.

Being around people that get you is a powerful thing by itself. When you meet as a structured group, it’s also about safety. The group is led by women who are trained to help us stay focused as a group and move ahead as individuals.

An awesome team of a psychologist and a peer worker lead the group. They have given me many insights. For example, they have taught me not to imagine I know what other people are thinking about me – a really big one for me. I finally admit I’m not a mind reader!

I have been able to talk freely about all sorts of things that I’ve kept bottled up. Like that I often feel uncomfortable and allow myself to be intimidated by people more confident than I am. That I can’t say “no”. That, as a user, if something goes missing, I worry everyone thinks I took it. That I find it hard to take compliments and am suspicious of people’s motives.

I can talk about how uncomfortable I feel about people looking at the scars on my arms, slash marks I made to try and take some of the emotional pain away. I can tell them that when I did a Certificate at TAFE, I was so stressed at having to do a speech that, even though I was nearly finished the course, I left and never went back. And in talking about these things I own them, I am no longer ashamed of them, and I can change them.

What we women who attend the group have in common is that we all need self worth. We give each other support and confidence. I can talk about my stuff, get it out. Not only do I feel supported, it’s been good to find out about other women and realise I’m not the only one with issues.

Since I started going to the group, things have changed for me. I’m finding it a lot easier to talk to people about my stuff, to open up and to trust. I feel more confident and I’ve learned how to talk myself up when my head is doing me in. My anxiety levels have gone down and I actually enjoy contributing to a conversation now.

I’d really recommend the group to anyone who has stuff they need to get out and don’t know who to talk to. Come and talk to me and my group of amazing women. We even have Tim Tams. You can’t get more of a welcome than that!

Brad's Story

Brad tells how he feels that being a PPP has given him what he has been searching for - the way to make a difference.

I really wanted to make a positive difference in the world and I thought joining the police force would give me that chance. It took me about 6 months to realise that I wouldn’t be saving the world - it was a gradual wake-up, but once I had arrested the same person for the same crime day after day, I got the message. The legal system was not the useful tool for fixing society’s problems that I had naively believed it was.

I was paid very badly to do the job I now hated and was hated by a large section of the community (I learned that cops are either loved or hated – there’s no middle ground). Every day I put on the uniform, I was making myself a target. That became clear when the AFP Assistant Commissioner, Colin Winchester, was shot dead in his driveway. After 3 years on the force, I resigned.

I went to London to work in the media in the sort of job where I took people to lunch and got home at 3am, trashed. I ended up with huge dependencies on coke and alcohol. After putting my house and significant income up my nose, I realised I had to either go to rehab or go home. So I got on a plane back to Australia. I got another media job in Sydney and managed to stop snorting cocaine – by injecting ice.

I found out about NUAA when I went to the NSP with friends to pick up fits. I could tell the difference from other NSPs straight away. Instead of looking down their noses at me, the workers were friendly and welcoming. I didn’t feel like a “client”. The equipment was set up as self-serve; I was treated like an adult with a choice, rather than the greedy petulant child so many services seem to think we are. For the first time ever, I didn’t feel uncomfortable about my drug use or getting equipment.

When I found out that some of the people there were volunteers, I decided I wanted to do that. I put my name down for the Peer Participation Program. That was 3 years ago.

I enjoy working as a peer at NUAA. Every time I help someone, by showing them a new technique or giving them clean equipment, I get something back instantly.

When I was sent to detox by the courts a while back, I was talking to a worker about NUAA. I pointed out that we did different things – at the NUAA NSP, we support people to take drugs safely, whereas the detox was all about getting off drugs. He replied that he felt we were doing the same thing – that it was all about helping people make a fully informed decision about their health. I really liked that.

That “making a difference” thing I wanted back when I was 21? I really feel I understand that now. Every day at NUAA that I volunteer, that I step up as part of the peer community, I feel that I’m doing something really important for my people. I’ve finally found where I belong and what makes me feel good about myself.

Jade's Story

Jade works with NUAA as an Aboriginal Peer Worker.

I had been using for 16 years and was on the run when I had just had enough.

I gave myself up and the judge sent me to the MERIT Program for 12 weeks. About half way in, I thought "I am actually drug free! I can really do this!" -- I realised I could use the things I was learning even after I left.

When I got out, I started to build a new life. I wanted to keep my mind and body busy. I was getting stronger day-by-day. I needed work and wanted a job I was passionate about.

I’ve always wanted to do something to help other Koori people, right back from when I was at school. I knew that with my drug-use experience, I could help people going through some of the same things I had.

I decided to go to TAFE and get the skills to be of service to my community. I did the Certificate 4 in Community Development and the Certificate 4 in Alcohol and Drugs and finally the Diploma in Alcohol and Drugs. At first, I was really nervous going to the classes. It was hard to come out of my shell and get to know the other students, but I got there. I got some tutoring to help me through the course, because my previous schooling ended at Year 10.

As the course went on, I realised how much I was enjoying learning new skills, meeting new people and bettering myself. I felt on top of the world.

I also learnt from text books and research what I had always felt to be true -– that community members know their communities best and have a huge opportunity to change things.

My personal path saw me get fitter –- I joined a Koori women’s footy team –- and I gave up smoking tobacco after being embarrassed by wheezing during training! Playing footy was more important to me than smoking, so I just got the courage to stop. My team played in the Koori Knock Out last year! We didn’t win, but we had a great time.

One of the best things to happen to me was getting the position of Aboriginal Peer Support Worker with NUAA, working out of a drug and alcohol service in Western Sydney. I had applied for a similar position earlier but didn’t get it. Luckily, that didn’t stop me trying. I was thrilled to get this job, it’s right up my alley.

Working with people who know me, with whom I share important things, is great. It’s amazing what can happen when someone can come into a service and relate to a worker, and the worker can relate to the service user. So much good can happen in that space.

I give out new equipment so people can inject more safely; give them info about avoiding, testing for and treating hep C; advise them about how the system works; share my experience and listen to them. They know they can trust me, which I will treat them with respect and treat their info with the privacy it deserves.

I believe everyone has skills. Some of us have the gift of the gab or the gift of the earn, but whatever it is, we all have something we can use to be of value to our community. Just the power of relating to each other and knowing we are part of a group that gets each other because we have “been there” can be enough.

I am so happy where I am in my life. It’s been a lot of work, but I’m living a life that I am passionate about, contributing something valuable, and connected with my family, my people and my community.

Hope's Story

Hope was NUAA's first Peer Worker and has been with NUAA for 10 years.

I had just finished a Diploma of Community Services and was applying for a few jobs. Out of the blue, a friend who was working at NUAA told me there was a new role going, called a “Peer Worker”. This was a first for Australia and there was a year’s funding to see if it would work.

The idea was that, as a member of the community of people who used drugs, I would know and understand my community and its needs, and be able to respectfully help people. The only catch was that I would have to “out” myself as a drug user.

The Peer Worker role was based at two Opiate Treatment Program (OTP) clinics and would be the bridge between the workers -- doctors and nurses -- and people on a methadone or buprenorphine program.

There were a number of Peer Worker models, but the first one we trialled meant I could not be dosed at the clinics I worked at. We have since got other models up and running, but for me, I was working out of an Opiate Replacement Treatment (ORT) clinic, but personally using a private GP/chemist combo.

I was warned it would be a tough gig. Apparently, the nurses were not keen on the idea of Peer Workers. It was thought that after the year was up, there would be so much resistance that the job would be canned.

I thought: “One year my arse! This is a fantastic idea and needs to happen all around the world!” I saw it as a challenge and I knew I was up to it.

There was no doubt the first 6 months were rough. We had to work out what a Peer Worker was – from a user point of view -- and what a Peer Worker should be doing. It was important to us that the Peer Worker was about meaningful representation, not just ticking a box. We wanted to have a genuine say in how services were run.

A big part of my job was to support the hep C treatment trials that were going to where people who used drugs were -- at ORT clinics -- and help people get tested and treated. Even though it was the old interferon treatment, we still managed to get take-up tripled.

The culture of the clinics also changed with a more respectful and inclusive approach. The waiting rooms were calmer -- there was not as much drama and people were relaxed. The Workplace and Safety incidents -- from violence to accidents -- were much lower than at clinics where there was no Peer Worker. Dosing procedures became less punitive and bullying reduced. People were grateful to have a Peer Worker to turn to as a source of info and to make complaints to, all without judgement. Peer Workers empowered people.

From my point of view, the biggest challenge was improving my relationship with the dosing staff. The nurses knew I was on methadone and would freak out if I even came to the door of the dosing room. It took a few years to build trust. It was more difficult because the nurses would come and go constantly. I was always dealing with new people.

After the year was up, the Ministry of Health saw that the evidence showed that Peer Workers work, and the project was funded again.

After all that work, I thought Peer Workers would be everywhere by now. It’s a model proven to work and I believe every clinic and service should have one. If you’re reading this and you have a Peer Worker at your service, please use them! They can’t change the service unless you tell them what needs changing. If you would like to try Peer Worker as a career, I would recommend going to TAFE to study Community Services, or perhaps joining NUAA as a volunteer to get some experience.

I have been working at NUAA for nearly 10 years now. I love my job. I hear all sorts of things and sometimes all I can offer is a judgement-free ear. Other times, I can do something to change things for people. I am very proud of all the people I have encouraged to get tested and treated for hep C. It’s turned out to be the perfect path for me.

Identity Rights

Overview:

The right to a name is basic to being human, being of worth and having a place in society. Without a name you have no unique reference point for others to relate to. However in the mental health area this right is conditional on the permission of the Health authorities, as an expression of their concern for the reputation of the consumer. In practice it only protects the Health authorities from criticism with secrecy and no media examination of Tribunal hearings. This is a touchpoint showing the lack of respect in mental health. Justice Action took this issue to the Supreme Court for Saeed Dezfouli, and finally won in a Tribunal hearing involving ABC lawyers.

Here is the original submission in his case, with an examination of the laws.

We have had to remove some of the details here under the threats of the NSW Mental Health Review Tribunal, but will supply more on request. 

Read more

 

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