Issue No. 6
Autumn Edition 2020
NEW THINKING FOR EMOTIONAL WELLBEING & SUPPORT
Chad Marshall-Lane Interview on the importance of
Inclusion, Diversity & Acceptance
MAVAM 10 years
of helping people
in our everyday lives
TRUST & UNDERSTANDING - Read Karenâ&#x20AC;&#x2122;s interview
on the challenges that she faces every day
THE MAVAM GROUP SUPPORTING PEOPLE IN INNOVATIVE WAYS SINCE 2010 SUPPORTED HOUSING
Providing bespoke support designed to meet peopleâ&#x20AC;&#x2122;s needs. Our support is provided in a safe environment for people living with mental health distress, learning disabilities and other complex issues, our goal is to help people to live as independent life as possible.
YOUR LIFE OUR HELP - YLOH
Providing a range of services in the community designed to help and support people overcome the problems and challenges that they are experiencing. Ensuring that people are at the heart of our services, which are currently; Help in Cluttered Homes, Student Support Services, Supported Living, Art for Wellbeing and Community Outreach.
Provides comprehensive IT, CCTV and monitoring systems, as well as marketing services for the Mavam Group. Under our trading style of Null Media we have a long track record of providing innovative hardware 2
and software solutions for external customers, and being specialists in digital signage.
Managing all of Mavamâ&#x20AC;&#x2122;s property infrastructure requirements. From major refurbishments to scheduled maintenance and minor running repairs, and helping people moving in and moving out.
CONTACT US Mavam Group Ltd Sproughton House, Sproughton, Ipswich, IP8 3AP Freephone on: Telephone No:
0800 1337 355 01473 487 373
Our Reason I donâ&#x20AC;&#x2122;t think anyone will forget 2020! A year that has generated so much worry, has challenged all our beliefs and norms, whilst bringing tragedy for many families. The Coronavirus has impacted all our lives and will do for years to come. For anyone that has lost loved ones, all of us within the Mavam Group send our condolences. Mavam Supported Housing and YLOH staff have responded to the challenges that the virus has brought, magnificently! In fact across the group our Estates, Technical Services and Group staff have pulled together to maintain the best possible services for the people we help and support. We would like to say a big thank you to everyone within the Mavam Group! When we started services 10 years ago, the aim was to help people, all people, in a way that was based on having relationships with them that are; kind, compassionate, thoughtful, honest, respectful and that leave people feeling helped.
Director of Development Mavam Group
The Mavam Groupâ&#x20AC;&#x2122;s ambition has always been to see people as people. To respond to their needs and their ambitions, as opposed to seeing the labels that they have been given. Linked to our overall ambition, our aim is also to create an environment where our staff can expect to have opportunities to develop and grow with us. Where they feel valued and respected, where they are supported and helped to provide the best service that they can. With our 10 year anniversary coinciding with the current COVID crisis, our plans have understandably had to change. Over all those years, changing plans and responding to significant challenges creatively, with determination and resolve, has been something we have often had to do. In doing so, we have so often found that out of terrible struggle, can come new growth, new ideas, fresh perspective and renewed determination. We hope that this will be the case for us and for all of you, as we look to come through this crisis. We hope you enjoy the 10th Anniversary Edition of New Reason. If you would like to get in touch with us, give feedback and share your ideas, please contact us. We would like to hear from you. Subscibe to our Magazine - Delivered directly to your Inbox or via Royal Mail - www.mavam.co.uk/new-reason-new-thinking 3
CONTENTS Autumn 2020
FRONT COVER 26 CHAD-MARSHALL-LANE interview The importance of Inclusion, Diversity & acceptance in our every day lives
16 Trust & Understanding - Karenâ&#x20AC;&#x2122;s interview and understand the challenges that she faces every day
10 Mavam Group 10 years of helping people 2020 marks 10 years since what is now The Mavam Group was created.
REGULARS 5 CONTRIBUTORS 3 OUR REASON 6 SHARE YOUR STORY 34 NEW REASON, NEW THINKING
FEATURES 2 MAVAM GROUP OVERVIEW 7 ADAPTING & RESPONDING TO THE PANDEMIC we have all had to try and comprehend the scale of what is happening.
42 MAKING ROOM POEM by Nikki Banas - Walk the Earth. 4
Meet the people who have taken part in the creation of
Matthew Morris Director of Development Mavam Group
Matthew Morris is our Operational Director for Your Life Our Help - YLOH. Having worked within the NHS, Voluntary and Independent Sector, for a combined 30 years, Matthew has a particular interest in developing services that see difficult feelings and unusual experiences as being understandable in the context of peopleâ&#x20AC;&#x2122;s lives. Services where people can be helped through relationships that build on strengths and are based on people living the life they choose for themselves.
Louise Rackstraw Creative Director
Mavam Technical Services
Company Photographer, Videographer & Creative Designer. Louise has established her creative skills within the Mavam Group, sharing the companiesâ&#x20AC;&#x2122; vision of the Mavam way of working with the public. Her work can be seen on our website;
From design layout, leaflets and video interviews.
ADVERTISING & PRODUCTION DISTRIBUTION & PRINTING
Louise Rackstraw Tel: 0800 133 7355 email@example.com
Mavam Group Ltd, Sproughton House, Sproughton, Ipswich, IP8 3AP 5
SHARE YOUR STORY We would love to hear from you about your own experiences, whether its of personal experiences or the support you gave a friend or family member. Sharing your experiences not only shows that we are not alone but also highlights problems that we all face in our day to day lives. Help us to promote a better understanding of the issues we all face and contribute to the development of better mental health focusing. We look forward to hearing from you.
DONT BLAME THE CANARIES ‘Don’t blame the Canaries’ by Matthew Morris has been published in a book called ‘We are the Change Makers’. This book is a unique collection of poems written by and for people who have survived our mental health system and the diagnostic process that is used to categorise and treat mental and emotional distress. In October 2016, Jo Watson launched A Disorder for Everyone (AD4E) – an international campaign to challenge the culture of psychiatric diagnosis and the labeling of expressions of emotional distress as medical disorders. Since then hundreds of people have attended AD4E events all over the UK, and thousands have joined the campaign Facebook group ‘Drop the Disorder!’ What began as a shout of protest has become an international roar. Poetry has long been used to give voice to resistance and to drive change in all kinds of social movements, and it is a central aspect of this campaign as well. It has been at the heart of every AD4E event and, more recently, several online poetry events have brought together poets and poetry-lovers from across the globe under the Drop the Disorder! banner. ‘We Are the Change-Makers’ is a collection of these and other poems that seek to describe the otherwise inexpressible and challenge the power of psychiatry that misrepresents and medicates what it does not understand. 6
Buy your copy @ www.pccs-books.co.uk/products/we-are-the-change-makers
ADAPTING AND RESPONDING TO THE PANDEMIC 2020 has been the year of COVID-19. In our work and personal lives we have all had to try and comprehend the scale of what is happening, adjust to the worry and fear that it provokes and find a way to keep our lives going in a way that doesnâ&#x20AC;&#x2122;t place ourselves or others at risk. Within the Mavam Group this has been extremely challenging and it has required cooperation and coordination throughout the whole organisation, as well as help and support from the wider community of services. What we have found through this emergency is, that COVID-19 has highlighted where there are very real strengths. That we have a workforce that is adaptable, creative, resilient and focused on providing people with high quality support. We are so grateful to everyone for their hard work, in particular those that carried on seeing people face to face.
From the outset, we moved quickly to have an oversight of the needs of staff and the people we support, by asking two very experienced members of staff whose role had been to monitor service quality, to lead on COVID-19. Ensuring that information exchanges were prompt and clear, that health and safety was paramount, that we prioritised those most in need, that we were clear about the needs of staff who were shielding, identifying where there were vulnerabilities and guiding on personal protective equipment. Our Head Office staff combed the world for personal protective equipment, with many orders coming from China and they then became our delivery drivers once stock began to arrive. Across the whole organisation we were clear that we wanted to be able to support 7
as many people as we could, as close to the care that they had received before as possible and, where this was not possible to ensure that at the very least we kept in touch and that they knew that they were not alone. Across Mavam, the staff have been amazing wherever they were in a position to do so.
The other features of the crisis for us have been adaptability and creativity, qualities that we have felt important at all times, but never more so this year. We have utilised the skills and expertise of Mavam Technical Services to create secure video tablet phones that enable us to work face to face with people in a virtual way. Working with our support teams to ensure that the tablets are easy to use and enable us to stay in touch with people.
We knew from the start that COVID brought very different challenges to everyone, as we are all different and our life circumstances are different. Those that shielded had to Throughout the year we have continued to keep themselves and/or their loved ones develop new services and offer more to our safe, we respected that and they did what communities. Mavam Supported Housing they could from home to support their have opened a new supported housing teams. For some people, project in Sudbury and are particularly at the outset, hoping to add another one the fear and anxiety in Lowestoft very soon. The virus appears was overwhelming, the We are about to launch an to have reminded uncertainty about the Art for Wellbeing service us all of the level of risk meant that through YLOH. This will give inequalities that they were frightened people the opportunity to were always there of coming to work. We work alongside artists so respected that and tried that they can utilise art and to give people time, creativity so as to improve reassurance and adjustments as they came their wellbeing. We have also created The to terms with what was happening. All the Life Learning Academy. time we were communicating and adapting, with the focus on maintaining the quality of The Life Learning Academy is an educational hub that aims is to place learning at the our support, safely and effectively. heart of wellbeing. The underpinning The support we had from Suffolk County principles of the Academy are what we call Council was very important. We found the three C’s; Compassion, Curiosity and that they reacted very quickly to support Creativity. The Academy will coordinate providers, offering some security for the internal training for the Mavam Group, initial period of the crisis and they were provide external training, offer training that very responsive to our needs, even if they relates to equipping people with life skills, couldn’t always help immediately. There was provide people the opportunity to learn a very real sense that we weren’t left alone about themselves through therapy and offer to manage the emergency and this was very people online training. helpful indeed. 8
All the time we have been looking to recruit new staff and over the last 6 months we have employed 15 new members of staff. So we now employ 130 people within the group. So for us the challenges and changes that have come with COVID have meant that we have had to look at the culture and structures that we have put in place. The virus appears to have reminded us all of the inequalities that were always there, the people who are most vulnerable to it were the people that were already the most vulnerable. This has been true of peoples physical differences as it has been of their social and cultural differences. So on a wider level, reflecting on our cultures and structures are needed now and for the future.
society we want to move forward. In The Mavam Group we talk about people being people, that in our work we are just people helping people. That our work and our approach is simple but also skilful. We believe that if your focus is to approach another human being with compassionate curiosity, then you will be in the best possible position, to not only help them but also yourself. Itâ&#x20AC;&#x2122;s with compassionate curiosity that you are open and able to learn and grow. COVID-19 has reminded us all of this and certainly within The Mavam Group we have learned so much about ourselves, and we have responded to the challenge.
We know that COVID has not gone and we must all be vigilant and maintain the new ways of living that have become so important. We also know that we all need to look ahead to the future that we want to see beyond COVID, when hopefully we either have a vaccine or we have learnt to limit the worst of its consequences. We hope that the social care needs and rights of the most vulnerable in our society will gain a higher importance. We also hope, that in the future that those workers who were so essential, courageous, professional and helpful, the ones we all clapped for every Thursday evening, not just in the NHS but across Social Care, Supermarkets, Public Transport, Cleaning and so many more that they retain their essential status, that this status is reflected in how budgets are divided and how as a 9
CREATING A CLIMATE FOR CHANGE 2020 marks 10 years since what is now The Mavam Group was created. The ambition that gave rise to our organisation remains as strong today as it was at the outset, in many ways stronger.
and experienced systems that didn’t work well for everyone. People didn’t always fit neatly into categories, people didn’t always respond well to the help that was offered and, people were often written off as too difficult. People “fell through the gaps” Our aim is to demonstrate that in order to and were often left to fend for themselves create opportunities for people to overcome or sent out of area for long admissions to the stresses and strains of life, there private hospitals. needs to be relationships that are strong, an appreciation of the inequalities and Mark and Alex, also both believed that as struggles that people face, a staff team who well as the systems not working well for are well supported, trained and motivated all the people they worked with, that the and, a firm belief that change is possible. systems didn’t work well for the people that worked within them. That the culture of Back in 2010, Mark and Alex Goulbourne targets, an emphasis on money, the drive to were sitting in their home in Gippeswyk categorise or diagnose people, the constant Road, Ipswich contemplating their future. reorganisations and local politics had Both had worked in mental health services created unhealthy working environments. and both had an idea that they wanted This often resulted in unhappy and to do something different. They had seen disillusioned people being given the task 10
of helping unhappy disillusioned people. acknowledges that we are all people/human Something that was unlikely to help anyone! beings first and foremost. That human beings need certain conditions in order to What they decided to do, was to start by be able to be healthy and live well. creating a new supported housing project. To do this they moved their family of seven, The aim within the Mavam Group is to out of their home, into a flat up the street embed a culture and a climate where people and to turn their home into that project. feel safe and able to grow. That focuses They made it available to anyone who on peopleâ&#x20AC;&#x2122;s strengths and where peopleâ&#x20AC;&#x2122;s needed a supported living opportunity. passions and talents are recognised and Seeing, people as people, first and foremost. developed. Somewhere where the people Understanding that anyone experiencing who are referred to us for help are given the difficulties that mean the respect, compassion, that they require supported encouragement and hope that We also have living, will be experiencing they are entitled to. Where some really some degree of emotional it is acknowledged that the exciting and distress and challenge. challenges and difficulties ambitious ideas, as we are keen to that they face are part of What Mark and Alex were continue to grow their stories and the things creating was a philosophy and demonstrate that have happened to them. that was a change and a As opposed to any idea that that you can be contrast to the norm. They there is something wrong with effective, cost were looking to provide them. effective and a response to peopleâ&#x20AC;&#x2122;s professional distress that was based in Mark and Alex moved quickly a real belief in their ability to recruit a group of people to overcome, and in the strength of the who shared their passion and ideas. Not core human values of; respect, compassion, just in the provision of help and support to empathy, helpfulness and hopefulness. They those referred to them, but also in creating were courageous to give up their family the infrastructure for staff that looked home and ambitious in what they were much further ahead. Meaning that Simon looking to create. With their new creation and Louise Rackstraw were invited to look being the beginning of an organisation that at providing the technological back up, would create many more opportunities to creativity and innovation that would be help others. needed. Joe Ingram took up the challenge of working on finance whilst he trained It was therefore very important, in the in accountancy. I joined with the hope of creation of a new organisation, to ensure creating new services for people. And, for that there was a culture that created the development of supported housing climates that were healthy for all. That they recruited the considerable knowledge, the overriding culture was one that skill and commitment of Ve Pascoe, Tony 11
Goulbourne and Rob Everett.
values. There have, no doubt, been times where we have not upheld them as closely What we all had in common was a as we would have liked and where we have determination to create something that was been knocked off course. We, like the people good. Good for anyone that we were asked we work with, are often at the mercy of to help and good for anyone who worked events that our outside of our control, and for us and their families. What we believed we are human, meaning we are far from would make it good, was a focus on what perfect! people need. For workers, we believe that this means; What we have found though, is a being respected, valued, listened to, to have confirmation that the aspirations that a sense of purpose, trusted, to have the began 10 years ago are being met. That a potential to learn and grow as part of the belief in core values does help good things organisation and to be cared about by the to happen. We have seen people and services organisation. For the people we are asked grow. We have staff who believe in what to help and support this means exactly we are doing and who make a stunning the same. Why would it be different? It contribution to peopleâ&#x20AC;&#x2122;s lives every day. is our belief and understanding from the mountains of research that exists in our We have infrastructures that are field, that these qualities lead to the best professional and effective, which have outcomes for us all. people within them that are being trained and developing in an exciting way. One that There have been many events over the last makes us very confident that The Mavam 10 years that have tested our approach and Group can continue to provide great service
and be a great place to work for many years to come. We also have some really exciting and ambitious ideas, as we are keen to continue to grow and demonstrate that you can be effective, cost effective and professional, whilst at the same time treating people with good sound values. Being true to those values and trusting them to guide you first and foremost, as opposed to being led by spreadsheets and tick boxes. It isnâ&#x20AC;&#x2122;t that we donâ&#x20AC;&#x2122;t have those things, they are essential for us to have objective information about how we are doing. It is just that we use them to inform and guide us in how we are performing against our values, and to ensure that we are creating a climate within which human beings can thrive.
the many people that have helped us all along the way. Most through their belief in us and their commitment to the work we do. Some in their challenge and criticism to what we are doing, which helps to bring us insights and learn lessons from where we have strayed from our path.
When Mark and Alex were embarking on this adventure, they were called mad by some people. Some told them that what they aimed for was too good to be true. I am sure that there have been many times when they have thought since, what on earth have we done? Perhaps we were a bit crazy! I hope though that now, as they reflect 10 years down the road on all that has been created, that their initial dreams have come true. That they have built the foundations for something that can last a lot longer and We aim to be celebrating our first 10 years bring health and happiness to many more over the course of the year. It would be great people in the years to come. to share our story and celebrations with all 13
Mavam Supported Housing provides bespoke supported housing across Ipswich, Stowmarket and Sudbury, with support packages designed to meet people’s needs. Many of our rooms have their own bathrooms, whilst some projects incorporate self-contained flats.
“We focus on the needs of the individual, not their diagnosis.” OUR PHILOSOPHY
Mavam Supported Housing believes in working with an individual’s strengths to develop daily living skills which will improve their quality of life and may give them the confidence to live independently within the community once again.
We offer a range of support packages which are based on an individual’s need.
Working in a structured way, we look to develop a service user’s self-reliance, understanding and self-belief so that they may reach their goals and reclaim their autonomy.
All staff undertake a comprehensive training programme which includes: Safeguarding awareness; Positive Behaviour Support; First Aid; Person Centred Planning; Mental Health Awareness; Autism Awareness, Substance Misuse Awareness and Self-Injury Awareness. Staff work towards attaining the Care Certificate and can study higher NVQ qualifications whilst working for the organisation.
Touching Hearts, Changing Lives.
Trust and Understanding
Helping People in Cluttered Homes Working for YLOH – Your Life Our Help, means making helpful relationships with people. Being prepared to help people emotionally and practically. It means understanding that we all have times in our lives when we need the help of others. That, at these times, we all value having people who; listen and don’t judge us, people who genuinely care about us, who want to help us, people who can see and recognise our strengths and abilities, people that we can trust and people who believe that things can change for us. Never are these things more true than in the work we do with people who have become overwhelmed in their homes with their belongings, in our Help in Cluttered Homes service. With the YLOH way of helping people, we have developed an approach that aims to listen to each person’s unique story, understand how their relationships with their home and possessions have been shaped. To respect that we all have a right to choose how we live, to develop plans collaboratively in how to address the issues that people either want or need to address. One person who we have been meeting and working with for some time now is Karen. Karen’s challenges each day are with her thoughts and fears that relate to all her belongings and much, much more. INTERVIEW BY MATTHEW MORRIS 16
Matthew: I started by asking Karen about her story and about how her experiences impact her life.
Matthew: So do your rituals and what you describe as your OCDs, relate to your belongings and your possessions in the home?
Karen: So I have a diagnosis of Hoarding Disorder and OCD (Obsessive Compulsive Karen: My OCDs are, I would kind of classify Disorder) and it’s something I’ve had the them as a fear of loss, a fear of damaging whole of my life in various forms. I think I something and perfectionism. had a high level of predisposition to anxiety So with me it is kind of black-and-white. and depression and then I had traumatic So if I lose a tissue I will need to find the childhood experiences. I think other tissue, if I damage something it needs children could see my anxiety and this led to be replaced back to perfectionism or to being badly bullied, they used to take completely replaced, I can’t accept that, things out of my pencil case, they could even if it’s usable with just a crack on it, see how anxious I was about my things. I’ll have to replace it. So really I have struggled all my life with OCD, anxiety and depression My OCDs are 24/7, they which really come out in OCD The biggest thing are in everything I do, compulsions/rituals. It was everything that leaves the with OCD is, like that for many years and house, everything that especially when probably up to my 20’s I was leaves the car, everywhere I am out of the able to manage it all to some I go I’m constantly house is the level or degree, although it worrying that something embarrassment. is lost or damaged. It is so was always there. exhausting all this, because As I went into my 20’s things began to get I’m constantly checking feet, constantly harder, I had my own home, I had a job, and checking bags and constantly checking I was travelling abroad. Life got stressful rubbish that leaves the house, checking and I found my OCD began to get harder absolutely everything. So, everything that and it was then I started to turn to therapy leaves the house has to be checked even and medication for the first time to try and potato peelings. If I go to a hotel I have to sort out. It was only really when I moved up check the whole of the hotel room and it here in 2007 and got married, when I had can take me an hour or even two hours to three redundancies in a row actually, and leave the hotel. I have a constant fear of I think that was the catalyst. I think that’s leaving something, the loss. And also added kind of the final breaking point and the OCD onto that is this view of perfectionism. So really exploded from then. So all the rituals for me, for example I have kept everything I had up until that point had been managed, my daughter had for the last five years. but they just got to the point where they Now, I know that there is a sock missing were no longer manageable and so for the from a set my daughter had. My sister has last 10 years it’s just been a fighting battle. got it somewhere in her house, that drives 17
me crazy because the whole set is no longer mental health. I think people probably complete. So, it is the perfectionism that just see me as a bit crazy. More than also drives the fear of loss and the fear of understanding there is an illness. damage. It just does consume every aspect of everything I do. You know, if I leave the So yeah, I think it is a very destructive illness house and if I go anywhere, if I go out in the for me. I have been out of work for the last car I’m checking the car. I’ve been known to 10 years. I have social workers involved, drive back to car parking spaces I have support workers, I’m my 5 miles away just because I now under the Maudsley. It attachment destroyed my marriage, it is think something is left on with the floor. not a very healthy environment possessions is for my daughter because it linked with The biggest thing with OCD is, is an environmental issue especially when I am out of the because it’s hoarding OCD. So bullying at house is the embarrassment I I hoard stuff in my house, but school think. People seeing the rituals. I don’t think I am a hoarder in If I go to a café I completely take the seats a classical sense, in that it is not that I see apart, or the cushions up if I can, because a use in everything. I want stuff to go, but I think somethings fallen down the side. my issue is the checking of it to go. And I think it is the embarrassment that I find certainly in the last 10 years that checking harder, because the compulsion that I have has become more and more pronounced, to give in to, but you know that people are more and more severe and I think, in part, staring, people are looking and I think I find that is with becoming a mother and life it hard because not everybody understands becoming harder. 18
I think that’s kind of put more of a strain on me which has then made the OCD more pronounced. It’s a vicious circle because then your depression is higher, your anxiety is higher, your OCD is more ritualistic and then your just in that vicious circle and it’s very hard to break. I think that’s where I was a couple of years ago and in a really steep decline, before I then was picked up again by Mental Health services and then on to the Maudsley. So with me it really is about the loss of everything. Even the fear about a tissue, I could feel the tissues been lost and I will sit for hours in my bed, even days sometimes, which was easier to do before my daughter, wondering where the tissue was. Which wasn’t really about that tissue, because I know that is irrelevant, but the fact was, if I’ve lost the tissue what else have I lost that I don’t yet know about. So in my head if I was able to keep track of the smallest detail then the bigger things will never be lost. So I would go through my daughters nappies when she was a baby, dustings on the floor I have to go through them all with my fingers grain by grain. We had new grass seeds put in this year and as it came up I had to check every blade of grass, it took hours. In case something had fallen in the grass. I have to check everything that leaves the house. So when people come in, if they’ve got bags open I get a panic about the bag. Shoes, coats anything that leaves this house, I’ve got a real strong issue with. As well as trying to remember all the sets and all the things that’s missing because life gets so complicated. I’m almost 45 years old now and I have had a lot of
things in my life. I have got a lot of things in this house that I’ve probably forgotten that I’ve got, but I will try and make my brain remember because I’ve got to piece the whole set together. Even things from my childhood. So when I sit and I watch the telly or something or someone says something to me it triggers a feeling or a thought, and I will sit in a ponder for hours and hours, sometimes days, in bed until I get that thought back. I’ve constantly got lists in my head of things, just lots of things, you know, where is this, where is that. Most people would let these thoughts come in and just go, but I don’t, for me they manifest and they manifest.” Matthew: That must be extremely tiring? Karen: It is, and put a five-year-old on top of that and I’ve been on my own. And on top of that if you’re tired it makes the 19
anxiety and OCD have a hold of you. So I do my rituals during the day and by the time the evening comes I’m quite worn out. Yeah, and it’s hard. Matthew: Sometimes people make assumptions about those people who live in homes where they are overwhelmed by their possessions. I wonder if you have found that? Karen: I had a man came to my home a few weeks ago, an electrician, he knows I’ve got mental health issues, I had to check his bag and he got quite funny with me, he had me in tears. I said, look at my garden, I’m under the Maudsley and everything. He told me he was taking it personally, and this was a man was about my age and I thought you should know better. I was really upset. There are people that just can’t see that there is anything other than you just being personal, you’re being offensive, you’re being lazy, playing the system. You get all these things out there. It can either be face-to-face or you would just be feeling it from someone. Because if you see me do my rituals you can see I’ve got an issue. If you look at my house you see I have an issue. But, if you get me outside the house, then you see that I am intelligent and you wouldn’t think I had problems. But it doesn’t matter how intelligent you are or your background, mental health can affect anyone.
into my mental health, because I know from my diagnosis from the Maudsley that I’ve got severe low self-esteem, because with low self-esteem it is very difficult to pull yourself out. So you don’t need negativity around you. Living with a mental health problem you’ve got negativity around you, so you don’t need other people coming in giving you more negativity. So I think you really do need to try and push these people away, and only bring in the positives in in your life, like YLOH. I do think there still is a bit of ignorance, and it’s not that someone’s lazy and can’t be bothered. When I watch the documentaries on telly, about “hoarders” and I see someone getting in a state, I can completely empathise with that feeling, that panic attack, and if you’ve never had that feeling, that sickening feeling, you can’t fully understand it.
I think “hoarding” can come out of lots of different issues, whether it is abandonment issues, abuse issues, issues with alcohol, issues like family break up. I think in my particular case, I thought that my attachment with possessions is linked with bullying at school. I over built relationships with things. But then, I think it is very difficult for people to understand why, because they just see the house. And although our houses may be similar in that they have a lot of stuff. What has driven them to this point is very different. Yes, but as I said, I can understand why people are in People see you as weak as well, and I have to that situation and other people just judge.” say for many years I did feel weak. I did feel like I was a weak person. Like I was less of a ...I was labelled as a problem... person than everybody else. That also ties 20
When I met Emma, I put her number in my phone and I listed her as life saver.
Matthew: So, how did you first hear about YLOH? Karen: I heard about YLOH from mental health services when I was under them for the second time. I had done some research about who could help and I had to fight to get funding from Social Services. At the same time I was starting work with the Maudsley and at first they tried to stop me seeing YLOH because of the Maudsley. But I knew I needed both otherwise I would get overwhelmed at home. With YLOH it isn’t just physical support, there was an emotional support so, you know, on days when I’m really struggling and I’ve been given challenges by the Maudsley therapist Gus, YLOH are there, you know, they’re an emotional support. Matthew: What advice would you give to anyone considering YLOH services?
Karen: I would say, be open minded. I would say, if you are unsure, just let them in. You don’t have to do anything at first. Just talk. I know that Emma and Sasha, who I see, are good at listening and getting from you what your needs are. They will really work their approach around you. And, the more open you can be about your situation, the better it is for both parties. So really, let them in, build a relationship and let them get to know you. You can then build a pattern that works for both of you. I think that is the best way. For me, when I met Emma, I put her number in my phone and I listed her as life saver. Because for me that what she was, because without her I was falling downhill really quickly. Without her I don’t know where I would have been. I am just starting now to think about getting a bit of me back. My daughter is learning the piano and I am thinking that I might like to do that. I want to go to teacher 21
training, I want to lose a bit of weight, that’s a bit of me back. But all the time I am saddened because I don’t believe I am who I should have been. Because of my childhood experiences, I am not who I should have been and that will never change, and I am saddened by that. I could have been anything and I think what happened took that away from me. It’s taken away a bit from everything that I could have done.
of damage. I know it did. I remember sitting there thinking why am I here? I was given all these things for me to calm down. But really it was the kids at school.
Yes, and now I am always thinking of things that I may have lost, I make lists in my head. I can’t write them down as I would worry about losing the list and then I would have to spend hours, maybe days just to get them back, it’s like a need for completeness. Matthew: So you see your childhood It is a kind of perfectionism, like I am the experiences as taking away from you some custodian of everything. I am striving for the of what you could have been. However you perfection that can never be and because also describe your current experiences as of that I lead an imperfect life. Because of illness rather that the consequences of what that I can’t accept human error as well. In happened to you? my work I did accounts and in that world everything was, and had to be perfect and I Karen: Yes, because I was always an liked that. But I would come home and there anxious child before that, I was taken to may be something like a broken plate and I a psychiatrist age 10 because of all my couldn’t accept that. worries. It is like when they make cars, they make Matthew: I see, so you believe that your them all perfect, but it is human error that anxieties and the way you were as a child makes them imperfect, and I can’t accept made you already vulnerable to the things that. I will be harder on myself than others that then happened? but I find human error very hard. It is like when I was bullied, my mum took me to a Karen: Yes, I think that I was always psychiatrist, yet she told me it wasn’t my different. I was an anxious baby. I was an fault it was the bullies. Yet I was the one anxious child and I think that the other seeing the psychiatrist. children could see that. Matthew: How would you describe the But, I do think being taken to the approach YLOH has towards your issues and psychiatrist at 10 did do a lot of damage to your recovery? me, I think if that hadn’t happened things might have been very different. I think it Karen: I have had help from other agencies cemented something in me. Although at before that didn’t help me much and I that time I wasn’t given a physical label. The didn’t feel they understood me. I think that fact that I was under a psychiatrist, I was because YLOH are experienced with lots of labelled as a problem. That did an awful lot different people’s houses and situations, 22
they understand and got to know me quicker. Emma from YLOH has been great, she listened to me and I was able to explain to her about my particular issues. She is good because she is curious and asks me questions, she wants to understand me and get to know what the issues are. She helped me to get the best out of my therapy.
and understand that there are days when I really can’t do anything, they will listen and work with me. I think that one of the most important things about YLOH is that they want to understand. They are genuinely interested in understanding me. Emma will say that she is fascinated by me, and I am sure that she is fascinated by everyone that she works with. She is genuinely interested I think that the really good thing about in me and eager to keep learning all the YLOH is their understanding and approach time. They genuinely do care and that towards mental health. They are well makes a huge difference to me. I couldn’t trained. This means that they aren’t pushy. have any old organisation, or cleaning I have had support workers before who just organisation, as they would just want to want to get it done. They are naïve to the clean. Which isn’t the issue. It is improving issues, and say “just get rid of it”. The thing the house but also improving the person, is, if they just take a bag of improving the environment she told me it rubbish and don’t allow me and their life. Rather than to check it, I will have to wasn’t my fault just getting it done. bring it in when they have it was the bullies. So you could come in my gone and their time will house and clear it out today, Yet I was the have been wasted. So YLOH and within a year it would be one seeing the understand that they have worse than it is now because psychiatrist to go at your pace. They my anxiety would have gone have to respect your rituals through the roof. and anxieties, but they are not stupid, in I don’t think that people get that. that they know that there are times when they do need to encourage and push a I do talk with Emma and the YLOH staff little. Because the idea of their support is about one day getting to the point where to get you better, so they respect my rituals we have achieved my goals. I tell them we but try not to indulge them. will get there. That they will come round and there will be nothing to do, and we Emma has been able to talk to Gus at the will just sit and have cake and chat. I really Maudsley and fit in with the work that think that they are lovely, lovely people. they are doing with me. There are things, To do what they do, they need to have that through the therapy that I need to empathy, they need to be kind hearted, do. With YLOH they are there to support and I think that is why it works, because and encourage me. With YLOH there is they really are lovely. no judgement, there is an absolutely full understanding, they really do go at your I think though overall the most important pace and are very gentle. They are flexible thing is trust. I trust YLOH and if I didn’t 23
have that, it would never work. Not trust in terms of people taking things, but trusting that they are listening, that they understand and that they care.
we have met over the last 7 years. Their stories, their courage and their wisdom have helped us to develop our approach. One that is always seeking to understand the many issues that are part of the experience of being overwhelmed in your relationship with your possessions. Everyone we meet is a unique individual with a unique story. They will have tried to make sense of their lives and the things that have happened to them in their own way. What we do is to listen, to hear people’s stories and try to understand with them, how they have made sense of their story and how that might relate to the issues that they have in their home.
Helping people to live their lives is the main purpose for YLOH
This “getting to know you” process is so important in establishing trust, in understanding who people are and being able to make plans that are likely to be helpful. Our experience is that in cluttered homes people’s attention is always drawn to the possessions, with them becoming the focus of people’s concerns and plans. What we say however, is that it is never about the stuff. It is always 100% about the person. That every person is different and unique. That we start afresh with every new person we meet, viewing them and their story as new.
Of course, as time goes on, we are strengthened and more able to help, because of the learning we have done thanks to Karen and the many other people we have met. It is their wisdom and their feedback that gives us the knowledge that The YLOH Help in Cluttered Homes service, is we must always focus on the person if we indebted to Karen and all the many people want to be of any real lasting help.
People Helping People It is that Simple it is that Skilful
We focus on what is most important, YOU! We provide a range of services that are designed to help people to live their lives. Art for Wellbeing Student Support Community Work Supported Living Help in Cluttered Homes
can we help you?
Contact us Tel: 0800 133 7355 Tel: 01473 487676 email: firstname.lastname@example.org 23
Areas of expertise include: • Safeguarding Mental Capacity Act and Deprivation of Liberty Safeguards • LGBTQ+ • Mental Health Act Awareness • Moving and Handling • Basic Life Support • Fire Awareness
CHAD MARSHALL-LANE Chad is the owner of CML Training Solutions and provides courses that can be custom-built to fit around an organisation’s specific requirements. He also gives talks on incorporating inclusion, diversity, and acceptance into all aspects of society and the workplace.
Interview by Louise Rackstraw
Louise: Tell me a bit about yourself.
towards them. That was the first time I’d outed myself in a training session. I had to Chad: Carer wise. I was about 17 when I make a split decision, do I ignore this or do started in health and social care in 1993 I challenge it? So I outed myself and asked on the old YTS schemes, and I’ve worked ‘do I look sick in the head to you?’ this in health and social care ever since. I have person replied, ‘what do you mean?’ I said worked with the elderly, with people with ‘I’m a trans-man, I used to be a woman!’... dementia, adults with mental health the people in the room were surprised, and issues, young homeless people, people with there were comments of ‘Prove it.’ learning disabilities, children with learning Everybody thinks of transgender as male disabilities and behaviours that challenge to female, and they don’t always think of and children with mental health issues. I did female to male. The person who made the my health and social degree in 2014, which initial comment was hugely embarrassed, I finished in 2017, I then went back into so I put the course to one side for a bit, children’s services, but I felt it was time for and we had a discussion. We talked about change, so I went into training. This enabled being more aware and more thoughtful of me to be a freelance health and social care what we say about people; you never know trainer, working with other who you’re offending. The I decided to agencies and companies. person that had made the develop a variety initial comment was from But after an incident with a person about transgender, a different culture so we of courses that I realised that there was encourages people talked about how if I had a need to bring LGBTQ+ said something about their to think understanding, inclusion culture, I would have been and acceptance into the care sector. called offensive or racist, I really wanted to highlight the importance of being careful of Louise: What was the incident? what we say to and around people. The course went relatively well after that, Chad: I was delivering some training at a but I realised I needed to do something care facility and I touched on the topic of about this, otherwise, how can we say that gender dysphoria. Gender Dysphoria was we really support people in all areas. considered a mental health condition until the WHO (The World Health Organisation) Being a trans-man, who better to deliver removed it in I believe in 2017. In this this sort of training, I have lots of experience training session, I touched on the topic to with it, I live it and I breathe it. So CML receive a response of ‘they’re sick in the training changed to include raising head’. Personally, I found this upsetting, awareness on LGBTQ+ as well. It’s not in my view if you’re working in mental about banging a drum. I’m not an activist. health, supporting people with mental I don’t stand there on a soapbox, telling health issues, how can you work with people you, you must, you must, you must. It’s if you have any negativity or prejudices about, looking at this from a different point 27
believe, and yes it’s very complicated, even I am limited with my knowledge. Louise: Why did you choose to go into Health & Social Care?
of view. It’s about looking at the hardship people have possibly gone through and looking at the comments you may be or are making around people. With all this in mind, I decided to develop a variety of courses that encourages people to think! Get them to sit back and say’ actually I never thought about it in that way’ and also to give people a safe space to ask questions. People are so scared of LGBTQ+ they’re afraid of getting it wrong especially making sure they have all the letters in the correct order. People are afraid to tackle the subject. The idea of these courses is to make it easier to talk about it, and then hopefully help people become more accepting, and to see that underneath it all we are people. It’s not a young person’s problem, a lot of people are thinking ‘oh it’s just a new phase that’s coming out with all the young people saying ‘I’m gender fluid or I’m nonbinary, or I’m this or I’m that’. It has always been there, it’s just now we’ve got names for each preference, and there are a lot of preferences, we are looking at sixty-plus, I 28
Chad: I just felt drawn to it. I think it’s just the type of person I am. Bit of a softie really. When I went into caring, I got the bug for it and tried to do my best for people, but I felt that the policies, the procedures and the politics just got in the way of people delivering the right care, and that was a big problem for me as I felt I couldn’t help people the way they wanted to be helped. So I went into providing training so I could help carers/people to really help people in the care sector. Louise: When you say care is not being delivered to people in the right way, in what way do you mean? Can you give me an example? Chad: Look at elderly care, for example, I would say a good 90% of elderly care environments are running on minimum staff, and people are becoming a task as opposed to being supported. What I hear a lot of from people in the industry is the time restraints on carers. From getting people up in the mornings, making sure everything is done by set times and getting people to bed at night. There is no wriggle room for people to be able to get up when they want to and to go to bed when they want. This has been going on for approximately 25 years, from when I first started in care. You would have thought we would have moved on from these procedures by now. But because these places are run on the bare minimum
they can get away with staff to resident ratios. Staff are just pushed to their limits. They haven’t got the time to sit and talk to people, to get to know people, to follow the care plan appropriately and to understand what the care plan entails. it is just rush rush rush all the time. A classic example of what I often hear is; ‘if I don’t get so many residents in bed by the time the night staff come in they complain. Then the night staff won’t get some people up in the morning…’ and my question is why? Why are we rushing people to suit the staff? Does the resident want to go to bed? If they don’t want to go to bed, the night staff are there to do a job, and their job is to care for these people and put them to bed at that person’s time.
Are the staff equipped to cope
Louise: when you did your talk at the ECA with that? last year you mentioned about having a big fear for when you are older, would you mind People started transitioning in the sharing this with the readers? 1940s, beginning with the first female to male transition. In 1946 a man called Chad: Yes, of course. My biggest fear is Michael Dillan published a self-study in getting dementia. Not because of what endocrinology. He was the first transgender dementia does because dementia is horrible man to undergo the change and the but because what If I regress to a time back phalloplasty surgery, which is what we before I transitioned. Imagine looking at would call bottom surgery if you like, that yourself in the mirror and thinking that gave him a prosthetic penis. In 1951 Roberta you’re a 20-year-old woman and you’re Carrol a former world war 2 spitfire pilot looking at a 70-year-old man, what do became the first transgender woman to you think my response will be? With undergo the full surgery. dementia, people become confused and find themselves living in the past. So when Everybody thinks they see their current self, even though they of transgender as have aged, they are still looking at the same male to female, gender, and you can help them get around and they don’t that. But it is not so easy if you are looking always think of at a different gender of yourself from the female to male one you remembered. 29
It is estimated that there are about 80,000 gay or lesbian elderly people within our health and social care services at the moment, some possibly with dementia. Think about it! Some of the people in elderly care were some of our early campaigners who were from the 1960s, 70s & 80s. They would have been in their 20s,30s & 40s while they were campaigning maybe even older. They are going to be in our care systems and possibly with dementia. During this time, up until 1967, it would’ve been about 10 years imprisonment for being gay, a lot of people would have been living in fear. People were sent for conversion therapy, electric shock treatment, given all sorts of medication if they came out as gay. They may still be living in fear due to past and possibly present experiences. There will be fear of other residents. Sadly, there is still animosity/prejudice towards this and not just with the elderly and this is due to upbringing, culture, influences or other reasons.
Are our care plans adequate to deal with this? A lot of people assume elderly people are heterosexual so they’ll just treat people as if they are straight and not ask those questions. Or are we scared to ask those questions? I hear a lot of people say ‘well it doesn’t matter to me if anyone’s, gay or straight or whatever...’ and I reply ‘I get that but if we don’t put the right things in place what you are actually saying to people is that you don’t care about them as a whole!’. So think about it!... saying,’ it doesn’t matter, I don’t care what you are or who are…’ you are saying ‘I don’t care about 30
you!’ making an effort to show that you care about the person may allow them to feel more comfortable and we might find that people would become less likely to present challenging behaviour. It’s about breaking down those boundaries and encouraging understanding and compassion. Don’t assume that Mr Brown, for example, at the age of 70, has or had a wife. I have noticed that when people come into care services, we automatically ask have you got a wife? Or do you have children? Instead, we should be asking have you got a partner? Have you got somebody close to you? Do you have somebody of importance to you? This allows for people to disclose what they want and to and feel comfortable enough to do so. Get rid of the boxes where people tick if they are heterosexual, gay, bisexual, straight or transgender allow this to be a written exercise, there are over 60 different terminologies in LGBTQ+, and not everybody fits into a box. We need to simplify this procedure, and all it takes is a little bit of thought. Give people the opportunity to disclose relevant information on themselves without the preconceptions of the husband or wife scenario and maybe then people won’t need to feel that they need to maybe pass off their partner as a brother, a friend, cousin or something like that. Louise: Wouldn’t it be nice to drop the labels and people just be people? Chad: Absolutely. For me, it gets quite infuriating because we have to label everything, why do we have to label everything? People are just people, So long as people are not hurting people or anything else and that it is consensual and
not with children, why isn’t it acceptable to be yourself? If people want to go through transitioning and change their gender, what’s the problem?
for them the same as anybody else. But people don’t understand the complexities within it, so my courses provide them with a safe space to have time to think and ask questions which will help them to It would be lovely if everybody were able to understand and to be more aware of what’s live their lives without fear of prejudice. going on in the world. To highlight the At present, I don’t know if we will ever get trials and tribulations of people and what to that point where people are accepting they may have gone through, and maybe of peoples choices because there is always why they would not disclose certain going to be a minority that goes against it information. To be mindful of the fact that for whatever their reason. they may have been put through electric shock treatment or conversion therapy and Louise: I wouldn’t mind sitting in on one of other things like that, to deter them from your training sessions. I feel I have learned wanting a same-sex relationship whether a lot from you from this meeting. What sort they’re male or female. of feedback do you get from the people on your courses? Chad: The feedback usually is very good. People will come up to me afterwards and say ‘thank you, you have made it so much easier for me to understand and thank you for allowing me to ask you questions’. They always seem really pleased that they’ve attended the course. Normally when people come in at the start, they’re quite negative because as far as they are concerned, they have done their equality and diversity training online with e-learning. I hate e-learning, it’s a tick box exercise, all you have to do is sit and watch the lesson then do the little quiz at the end, but you don’t take anything in and it is not engaging. People who have done their equality and diversity training sometimes feel that they don’t need to do the LGBTQ+ because it is covered (in a very small way) in their e-learning. People generally say ‘well I don’t care’, to them it doesn’t matter what people are because they would care 35
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Judgement Calls – The Consequences of Not Listening To Peoples Stories by Matthew Morris Sue was an only child. Her parents were conflicted about having children, with her Mum never really wanting any, feeling that she had never had any maternal feelings. Her Dad always keen, but maybe more from expectation than the reality of actually having a child. Her earliest memories were of long periods alone, talking with her toys, in particular Molly, who was a rag doll given to her by the next-door neighbours. Her Dad was not unkind, he didn’t hit her or mistreat her. However he didn’t talk to her much, he didn’t hug her, he didn’t really pay much attention to her at all. Mum paid attention. Sue found it very difficult to please her. She knew from a very young age that she was supposed to do something, but to this day she hasn’t discovered what that something is. This was not for want of trying. Her Mum was just unhappy with her, or at least that was how Sue felt. 34
Sue worked very hard at school, grades were always A’s and reports always excellent. Although they would all always comment on her quietness and lack of aptitude for PE! Other children found Sue odd and different. She was very aware of this and whilst she longed for companionship, she had no idea about how to find friends or talk to other children. This naturally made her a target for bullies. Over the years she experienced daily taunts, threats, teasing and some physical assaults. Sue met her husband, Mark, when they were at University together. He was her first-ever boyfriend, probably her first-ever friend. He had noticed her and they had their studies in common, as well as the fact that he too had always been a target for bullies due to his shyness. Whilst Sue was sure that her difficulties were due to something wrong with
her, Mark was just as sure that others were to blame for how he felt. His outlook on the world was that it was a dangerous place and that people couldn’t be trusted. Sue later discovered that this included her. Mark, over the years, became increasingly controlling. Sue had seen her feelings of love and companionship, replaced by foreboding that had become dread, fear that had become terror.
for her. So when Mark told her that she needed to get something for her headaches and maybe there was something wrong with her, she agreed. The GP saw her for a ten-minute consultation, she told him about headaches, sleep problems and how sad she felt every day. He told her she was suffering from Depression and prescribed her with what he said was an anti-depressant called Citalopram. He said to come back in two weeks, that he was concerned with how depressed she was and that if she was no better, then he would refer her to a psychiatrist.
Sue felt trapped, not only by Mark and all his issues, not just because of their interdependence financially, not just by her fear of change, not just by not knowing what to do, but Mark knew the GP was right. He also because she knew no knew that his wife was different. Other peoples She was not just mentally ill and that lives were a mystery to she needed help. For experiencing her, like the soaps that him, this explained a lot. anger, Mark didn’t approve of her He was angry that she this was rage watching. Although Sue hadn’t sorted herself out was desperate to escape quicker, angry that she was from what was happening affecting how he felt and to her, she had nowhere to go and no his life. Angry that his life wasn’t as he one to talk to, hope was as elusive and wanted it to be and about how this as taunting as it was tantalising. was Sue’s fault. Eating to make herself feel better, making herself vomit so as not to put on weight and draw attention to herself, Sue started to get pounding headaches, sleep was elusive and she was often tearful. When Mark would ask what was wrong now, she would answer that she didn’t know. That she just felt so sad. Sue really didn’t know, because she didn’t know any different. Her life was her life. It was her normal, so to feel so sad, to be suffering was confusing
Sue took the Citalopram. At first, it provided a welcome relief from the conflicts she felt within herself every day. It numbed everything. She slept a little better, cried a little less and was able to focus a little better on her daily routines... However, over some time, she became more and more aware of a burning feeling that seemed to be coming from the depth of her stomach. It was a feeling that whilst not totally new to her, had no name. She became more fearful, not just because it 35
burned so much more intensely and more profoundly, but because she started to realise that maybe she did know what it was. It was something she had no idea what to do with. She was not just experiencing anger, this was rage. Sue often thought about harming herself. She had, when the kettle was boiling, held her finger on the button to stop it clicking off and put the other hand in the steam. She had placed fingers on the iron and often looked at the knives in the block wondering which would she would use to cut herself. Although in her follow up meeting with the GP, she didnâ&#x20AC;&#x2122;t give him all the details she did allude to thoughts that she could or should punish herself. This was enough to trigger the psychiatric referral.
was about the same age as Sue, and she appeared to have little interest in looking into her mind. She asked the same questions as the GP, this time perhaps with a little more seriousness and there was something about her that made Sue feel uncomfortable and frightened. She then asked Sue about her thoughts of punishing herself.
Hers was not an urgent referral, her story as presented by the GP was common. It referred to the facts, as he saw them. Sleep, diet, thoughts, feelings and Sueâ&#x20AC;&#x2122;s treatment. She was seen two diagnoses months later as an out-patient.
Sue had felt so guilty about these feelings and what she had done, she was embarrassed and ashamed. She was also very changed frightened of what else she regularly could do to herself, she thought The psychiatrist was nothing like she expected. Sue still that maybe if she told the had some ideas inspired by psychiatrist, she would know what to television that the psychiatrist would do, she might know what was wrong have a couch and be interested in and she would help her. So she told the helping her to look inside the working doctor all about it. of her mind. She also thought that the psychiatrist would be a middle-aged The reaction she got was a surprise. man with white hair and perhaps a Suddenly the energy from her beard. interviewer changed, her frown deepened and her head tilted even The psychiatrist was a woman, she further to one side. Her eyes widened 36
and she was paying intense attention to Sue. Sue felt both appreciation for the interest and fear of its intensity at the same time. She knew that her disclosures had changed things, but she was unsure about what this meant. The consultation lasted 15 minutes. The outcome was confirmation of her diagnosis. An increase in the dosage of Citalopram and a new one added that Sue could take to “calm her down” when she felt angry or like harming herself. She later found out that this was an anti-psychotic. Over the months and years that followed, things became steadily worse for Sue. Her feelings became more intense, but her ability to process them was diminished by her medication. Her actions became more desperate at times, resulting in admissions to psychiatric hospital, which at first were voluntary but became mostly enforced, often at the instigation of Mark. Sue’s diagnoses changed regularly, moving from depression to schizoaffective disorder, to bi-polar and then borderline personality disorder. The length of her list of diagnoses only being bettered by the list of her medications. In addition to them, she had experienced several courses of ECT. “Treatment” which had initially appeared to make her better, but which left her confused and missing memories that to this day have never returned.
No one asks them what has happened or is happening in their lives
This story of Sue is, sadly, not uncommon. However, Sue does not actually exist, her character and this story is one I have created, having heard many times similar accounts from many people. What everyone has in common is that along their journey in seeking help, no one takes time to get to know them. No one asks them what has happened or is happening in their lives. Or, if they do, the checklist of symptoms and the subsequent diagnosis becomes the story and people’s lives at best an anecdote. As human beings, we naturally know that how we feel is related to what is happening in our lives and who we are. In our culture however, at this point in our history, we have been taught to suspend our knowledge and believe that if a person in authority tells us that we or someone we know has an illness or disorder, they must know better than us. This, I think, is dangerous and history tells us so. In 1851, an American physician came up with the diagnosis Drapetomania. This was, according to him, a mental illness that only applied to black slaves. The main symptom of the “illness” was running away! For over 100 years prior to this, slaves were considered immune from mental illness. This immunity was considered to be because mental illness was associated only with the stress of profit-making. With this only being relevant to white men. People in authority and power believed in Drapetomania because it made sense to them from where they were viewing the issues. For them, slavery was right, black people inferior and/or 37
given better opportunities than they had when they were free and “living like savages”. They couldn’t understand why they might want to run away, take on the stress that came with freedom and making money. Therefore when they witnessed slaves suffering, being distressed, angry, frightened and fleeing, they concluded that there must be something wrong with them, they must be suffering from a mental illness.
think and what they would do. The answers are incredibly common whatever the group. People say that they would; be frightened, angry, frustrated, they would feel sad and suicidal. People talk about withdrawing from life and hiding away. They say that they would look to alcohol and illegal drugs to block out their experience. They say that they would feel alone. No one ever says that they would talk to a doctor or psychiatrist, even when doing the training with mental health professionals.
Psychiatry and mental health services generally have a long history of association with interpreting the stresses and struggles within society as Over the years of doing this exercise, illness. All minority groups throughout what I have found that what people history that society and in particular talk about as the consequence of the ruling elite considered difficult hearing a voice, seems to be common or deviant have been for anyone who is trying Be aware of what to come to terms with diagnosed and “treated” as ill in asylums and being seen as different. we are doing mental hospitals. For example, when I and change it. have researched the Some training that I do on “symptoms” that justified helping people to understand hearing diagnosing homosexuality as a mental voices has highlighted how this process illness, which it was until late last gets played out. century, I was shocked to find a list that was so similar to the list that had In the training, I do an exercise that come from every session that I had aims to give people a very loose about hearing voices. experience of what it may be like to hear voices. An exercise I learnt from So, are we talking about symptoms of trainers who hear voices and who were illnesses or, the consequences of being part of the Hearing Voices Movement. or experiencing differentness. The kind of difference that your culture/society I ask people to talk in pairs with a third finds difficult. person standing or sitting behind one of the pair and talking in their ear. This This is something that not only is to simulate what it might be like strengthens my belief in the hearing to hear a voice. I then ask people to voices movement and their assertion imagine that this is their daily waking that hearing voices is an equal rights experience and tell me and the group; issue, but also that we are all capable what they would feel, what they would of falling into the trap of judging an 38
understandable reaction to what is happening in others, or our own lives. That this judgement gives rise and ammunition to the medicalisation of legitimate, feelings, behaviours and experiences. Homosexuality didn’t stop being seen as a mental illness because psychiatrists changed their minds. Things changed because of the gay rights movements. It became ridiculous and outrageous to seek to medicalise men’s sexuality and expose them to cruel “treatments” to change who they were. Drapetomania didn’t stop being a mental illness for slaves because of doctors and the establishment. It changed because of the campaigning against slavery and only gave rise to other diagnoses and ill-treatment of people because of the colour of their skin, with the suffering brought about by racism or the fight against discrimination dismissed as disorder.
we are all capable of falling into the trap of judging Many people will think that I am being unfair in highlighting these particular examples, many would tell me that things have moved on now and things like that couldn’t happen today. People might try to tell me that science is now too advanced, we are all much more aware of what mental health problems are. Sadly, for me, this not the case. People are still being diagnosed and medicalised for
their understandable response to the things that are happening to them and blamed for their suffering when society discriminates against them. Just the other week I read about a young person who went with a friend to A&E. The person had been experiencing hearing voices and was feeling sad and desperate. They were overwhelmed, and the friend did most of the talking when they saw the doctor. They disclosed to the doctor traumatic things that had happened to them in the past and how these things may relate to how they feel now. The doctor, following a 10-minute consultation, diagnosed them with; Anti-social, dependant, narcissistic, psychopathic personality disorder, manipulative attention-seeking. As someone commented afterwards, “not so much a diagnosis but a character assassination!” A slave fleeing their situation would, no doubt, express a wide range of emotions and exhibit behaviours that would be associated with a person who was desperate, terrified, overwhelmed, angry and a whole range of other things. A young person who has experienced trauma in whatever form is also likely to be feeling and expressing many different, distressing and confusing things as a result. A person like Sue who has, from the moment they were born, had to try and make sense of their world, their place in it, their relationship to others and suffer the consequences of being unprepared to care for herself and be 39
so vulnerable to others who say they know best. Some peopleâ&#x20AC;&#x2122;s reactions to life, their feelings, and behaviours, get named, labelled, diagnosed, approved or disapproved of. This is something that we all do, it is probably as much part of being human as having feelings. What is missing today, however, is the encouragement and confidence to understand it and own it. We might then be better placed to be aware of what we are doing and change it. We cannot just blame doctors as they are carrying out a function that we have endorsed and let go unchallenged. We have all left the people who are already vulnerable and suffering, to have the consequences of their pain labelled and left them further marginalised. For the Mavam Group, our work is based on the desire to help people. To offer social supports that enable them to overcome the difficulties that they experience. We witness the experiences and consequences that I have described above every day. We have experienced the challenges and consequences of being different, individually and collectively. What we seek to represent is that change is possible, change is needed and that change starts with all of us doing
something to make change happen. Our aim is to take our straightforward philosophy of â&#x20AC;&#x153;people helping peopleâ&#x20AC;? and underpin it with opportunities to learn, opportunities to make and sustain meaningful relationships, integrating peoples stories and experiences into our learning and having the courage to be different and celebrate that. To be able to help a person however, we first have to see them. We have to really see them. Not see the person as defined by who we are, not see them as defined by others, but to see all of them. Taking the time to listen to them, to hear them and to find out with them who they are and what they would see as helpful. In that way, we aim to represent and demonstrate that help for people struggling emotionally does not have to focus on mental health, diagnosis and disorder. That regardless of the labels that are attached to people, we are all first and foremost people living our lives the best way that we can given the circumstances of who we are, where we are and with whom we are. When we can really see ourselves and others and accept and celebrate difference, we are able to create something that has the ability to transform lives.
Listen. People start to heal the moment they feel heard.
Making Room Its not about simply forgetting and moving on; That’s never how it works. That’s not how grief works. That’s not how sadness works. That’s not how disappointment works. You’ve got to make a little home inside of you for those memories and feelings. Whether you want them there or not, those memories are a part of you now. Those happy memories will stay with you - but so will the sad ones. So you have to make room. You have to allow yourself to feel them all deeply and accept that they are a piece of you. You will never be able to force out their intensity, their depth, their persistence. So let them in instead. Be vulnerable with yourself and allow yourself to feel every raw emotion entirely. Feel them and accept them and know that even though they are a part of your yesterday, They do not get to define your tomorrow. Nikki Banas – Walk the Earth
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