Human Rights and Stigma

See Me Seminar

Glasgow

Hello everyone

I am very pleased to be here today, it is exciting to be able to give views, to tell stories, to participate, to feel included and equal and valued.

To be able to talk about human rights and stigma is great.

And in the first five seconds of this presentation I find I am already making some sort of a point – in my thinking, a human rights approach to stigma means those bits I just said, all the bits about equality and participation and inclusion can be found throughout human rights legislation.

So in some ways if I am talking to anyone from any user and carer group that is dedicated to having its voice heard then this talk is almost redundant already – as far as I am concerned when we talk about human rights and stigma we are really talking about the ability and necessity for people with direct experience of mental illness to have a voice and to stand up and speak out and, in many ways, give witness to their lives and their friends lives and what it is that can be done to make the living of those lives just and fair and as good as possible.

We have been doing this in Scotland for decades already. But before I back off of the stage in embarrassment I would like to expand on what I have to say.

I have an almost instinctive reaction when people talk about human rights, first of all I think of marches and banners and demonstrations, I think of raised voices and all the extremes of emotion you can think of, I think of the outstretched finger saying;

“You will do that!”

“You are guilty of this!”

“We will not back down!”

From both sides of the debate and, when I am in my more militant persona, I think of lawyers in smoke filled rooms working through the night to stop the people shackled to stakes in Nepal, people chained to the ground in Ghana, people shot in Mozambique, people caged in beds in Romania and then I think how does this apply to us?

And a part of me wants to stand up and say human rights are a given, are a law, we need to do all we can to protect them, even if it is by civil disobedience or by shaming the culprits we see around us.

But a larger part of me talks of dignity and reason and understanding; a much larger part of me talks of how we shift attitudes here in Scotland in different ways, where we also undoubtedly suffer from human rights abuses if less visibly and a part of me remembers those times when, in HUG, we say we are all about rights and then we giggle a wee bit and look a little embarrassed because, to be honest, most of us only have a sketchy idea of what our rights are.

And the largest part of me, that shrill and frightened part of me says be careful what we say on this subject because here, there is room for all sorts of polarisations, where families begin to hate each other, where friends go shifty and where professionals and society find themselves cast as demons.

And this is because life is complicated, we have a right to family life, to the chance of employment, to freedom, to health services, to privacy, we have the right not to be treated inhumanly and to be treated with dignity and it is extremely easy, if we are angry to say;

“Look what has happened to us.”

When a man in an airport said I didn’t deserve to live because I had schizophrenia he was clearly not interested in my rights but sometimes I wonder where he gained that opinion from, what he had been told and read and watched that made him think I shouldn’t live.

When my son said my illness was beyond the pale, was unmentionable, was disgusting and I heard this second hand and felt my heart plummet I did not pause to think closely – I did not think of my son watching me going into hospital time and time again, always wanting to die, always thinking outrageous thoughts, it did not occur to me that for years he witnessed me in the darkest of dark places, that he witnessed his mother trying to deal with something almost impossible to deal with.

In the same way when my brother is shouting at me down the phone because I want to stop my medication or my dad is saying;

“How can someone as intelligent as you think such thoughts? How can you be in hospital?”

Or my friends and partner are wholeheartedly agreeing with my detention which is now in its fifth year.

They both are and are not denying me my ‘rights’, mainly they are denying me nothing, they are loving me.

My mental illness, or whatever it is, is not some mark that can be wiped off, it is not some weird way in which society reacts to people who are seen as different; it is something that has devastated those around me.

It has ruined the joy of those closest to me and, to some extent, it has blighted my life too.

What surprises me is just how good a life I do have, how many friends I do have, how many opportunities are always available to me.

I do not know how I would react if I had to watch the person I loved most spending days trying to stub cigarettes out on himself, I do not know what I would do if my love said she wasn’t ill but was determined to set herself on fire, I do not know how I would cope if my sister spent day after day staring into space, doing nothing, saying nothing, feeling, apparently nothing, and not acknowledging me at all.

I do not know how I would react if I was witness to all the things I have done to other people. I am not sure I would still be around in my life or smiling, I do not know that still I would be reaching out still holding me and treasuring me.

And so sometimes, when I hear people talking of basic injustices and saying;

“This is not acceptable.”

I pause a little and think it is almost inevitably more complicated than we think, people like me do lose friends because of discrimination, do lose their families, do lose their jobs, do lose their freedom but sometimes it is because the pain of being with us and staying loyal and supportive is more than some people are capable of living up to.

I had to say all that, I had to say it is complicated and that a wee sound bite, a wee bit of inspiration and motivational talking, will not overcome the sometimes insurmountable issues we and our loved ones face however unjust they may sometimes appear to be to us.

But also it is not insoluble.

I have chosen three topics to talk about today, benefits, detention and having our children taken into care.

They are all areas of our lives that are fraught with emotion and baggage and they are all areas where human rights are central and all areas where, what may seem to be our human rights, are taken away or are at risk.

In HUG, which is a voice for people with mental health problems in the Highlands, we have, for years divided our work between our stigma work and our advocacy and campaigning work but latterly we have stopped doing this.

The two themes of activity are inextricably linked, if you ask See Me for a copy of the report that we wrote two years ago on how services users should be involved in See Me you will see that access to help, campaigning for resources, challenging attitudes and discrimination and getting the right information are seen by many as all inextricably bound together and that to address these issues means taking action in a number of different linked ways.

I’ll start off with benefits.

For the last few years our members have said that benefits are one of the worst aspects of their lives and one of our key priorities to act on.

They talk about how demeaning the media coverage of people on benefits is, how judgemental the politicians are, they talk of pretending to be employed to avoid being seen as scroungers, they talk of managing on a pittance and yet being seen as living a life of luxury and they talk about how reviews and ATOS have filled them with fear, such a fear that some of them have become desperate, have become suicidal.

It is an area full of anxiety and misery and shame and fear and our members have wanted us to do something about it for years.

We have done the usual, we have responded to consultations and white papers, we have lobbied our MP’s and others. We never thought that a small group such as ours would be able to make National changes but it was good to see our sister group, New Horizons, creating actual changes in legislation and to find that our voice, combined with others was actually resulting in recommendations and change from the various commissions that have been set up to look at the subject.

As we all know, nothing has been won, no huge changes for the better are in the offing and to be honest, many of us do not know what change for the better would be, but we have had an influence locally.

I’ll describe a few areas of action we have taken, both those which change attitudes and those which change systems because stigma is both about attitude and behaviour and how we are treated.

We participated in the anti-bedroom tax campaign and were able to get media good coverage when our members talked about how they felt about possibly losing their homes, and how they struggled to pay the new charges.

Initially we talked under the banners of anyone who would hear our voice but after a time we became weary of the confrontation, when a demonstration about the bedroom tax became personally abusive to Danny Alexander our members moved away from this sort of behaviour

But when we highlighted the horrible letters our members were getting from the local housing department with local councillors, we saw shifts in attitude, we saw new letters being sent which offered support rather than threatening eviction, and our councillors, who we were beginning to think of as our enemies, became people we wanted to stop on the street and talk to and thank.

We appeared on BBC Alba and Radio Nan Gael talking about what it felt like to be on benefits partly because of those councillors.

We talked with the Highland Council equalities committees, and budget setting committees and multi agency committees about our experience of the system and especially what services helped us when we were desperate and we found we were being listened to.

We talked of the need for more welfare rights advice for people with mental health problems across Highlands and we praised those organisations that already helped us and now we are seeing the very projects we asked for coming in to being.

It is the odd conversation that you have and making the assumption that the aims of so many of us, who live such different lives, and come from such different backgrounds are often the same that can make such a difference.

When we talked with the Scottish Association of Social Work about welfare reform it was liberating to hear social workers saying that they thought it was a part of their duty of care to speak out about the impact of welfare reform. It was lovely to have a succession of HUG members, both those who are loath to claim benefit and those who feel they will be on benefits for ever, speaking out about their experiences at a national conference, it was great to see our talks summarised in the social work journal and to hear of the huge impact the testimony of our members on the conference.

It is learning to give a story which is powerful and moving, but a story that does not blame does not demonise, does not make the audience shift uncomfortably and think to themselves;

“I am not the ogre you say I am – I too want to improve peoples’ lives”

that makes the difference.

And so with benefits, we have appeared on Channel four news talking about our experience and this can be hard for our members, wondering what they look like, how they come across, how they will be viewed and when you are responding to news items you do not have time to build a relationship, you do not have editorial control and you need to respond quickly on extremely emotional subjects with people you have never met before.

In contrast when we worked with the CAB and Citizens Advice Scotland to educate doctors and psychiatrists about what it feels like to claim benefits, about how important security is for us and how important their supporting information is, we are dealing with people who we may see the next day in a personal consultation. We are exposed in a whole new different way and here it is preparation and briefing and debriefing that are vital and that years long process of building relationships so that we know when we enter a crowded room of professionals that we will be treated with respect and responded to courteously when talking of areas such as this where we may feel shame and awkwardness.

In complete contrast when we provided evidence to Inclusion Scotland about human rights and included our thoughts on the numerous ways we think welfare reform has challenged our human rights we create a soft safe but vibrant space to hold our discussions amongst each other, where we can gather information and consult with those of our members who are more expert than some of the rest of us in the field of welfare reform.

And we carry this into our work with mental health officers, if ever there was an issue that was ripe for confrontation and emotion and tears and anger it is sitting down with the people who have time and time taken your freedom away and compelled you to take drugs and treatment that you do not wish to have.

It is sitting down with someone who has, with all good conscience, said that they fully support the sort of intervention that means you have to go to the toilet in full view of strangers, have to be followed around for day after day and week after week and get chased down the corridors of hospitals when you try to escape from this.

When I think of the meetings we have had for year on year, I think we can draw parallels with books like “Between Enemies” where Israelis and Palestinians meet to learn and communicate and understand or of activities like the truth and reconciliation commission in South Africa.

Because when your freedom has been removed and you are with the person that has taken away your freedom that is sort of what it can feel like.

And yet usually it isn’t – usually our input into the mental health officer training course that has been going on every year for at least the last decade is full of laughter and discussion and debate and interest.

We are careful how we approach this training – we are very keen to get people involved who disagree with the whole idea of sectioning as well as people like me who think it has saved my life; we want the debate to open up, so that we can all challenge, can spark new ways of seeing things, we get people who will candidly say that being hospitalised would have been worse than death for them and that being left to their voices was the best that could have been done and we get people talking of the loneliness and the mess that detention can make of us at this time and we get people who say that having space and safety was the best thing that could have ever have been done for them.

But what we do not do is get those people who are still so wounded and angry and disillusioned that to walk into a room of mental health officers would either give them a panic attack or make them shout and bawl and never forgive.

Because when we talk of dialogue and human rights we need to find a way of respecting the rights of everyone we speak to, we need to help people to learn but we do not need to brutalise people with our emotion or our beliefs. It is often only by helping all of us to open our ears and eyes, and to ask the questions that are about understanding and learning and give the stories that are about providing understanding and learning that we make progress and breach the barriers others create and we create and by doing so we create new ways of interacting and new ways of seeing people who, in other circumstances, might only see each other as enemies.

Every year we spend half a day talking with trainee mental health officers and trained ones about our experience of detention and another half day about recovery. And sometimes it is the truly unexpected that really makes people think and listen – on three occasions one of our members who is herself a mental health officer and daily approves the detention of people has told her story of when she herself has been sectioned and when that happens cultures, stereoptypes and expectations all have the chance of shifting into new ways of being and seeing.

Lastly in examples of human rights and stigma I am going to talk about the HUG group known as Hear Me. It is a very small group of parents, in this case mothers, who have had their children taken into care or put up for adoption.

For me this is one of the biggest human rights issues, for me having a son who regards me as dead and who I have not spoken to for the last five and half years is the single most painful thing I can imagine.

When I look at our members who have had their children taken from them by force, I cannot imagine the blow and the shock this can cause.

Instinctively when I think of losing your children because you are disabled by a mental illness, I think surely, surely any disability legislation would serve to stop this? Would provide the daily support that would surmount the barriers and mountains that mental illness can put in front of looking after our children?

And yet although many members of our small group do say this do say;

“If only I had had the support,”

We also have members who explain things in ways that are so dignified and so moving. I will never ever get the image of one of our members talking about her abusive childhood, talking about her illness, talking about how she treated her children when she was ill and talking about how, much as she wished to, she couldn’t cuddle the very people she loved more than anything, how she has been hospitalised on every anniversary and yet believes with all her heart that her children did need adopted and are better off away from her care.

It illustrate so well how complicated even the most basic of issues can be and how, when we try to think of right or wrong or good or bad, such concepts can almost always be pretty much redundant.

See me has given this group a small grant to help us grow it and develop it, I doubt it will ever be a very big group, as to talk out about a subject such as this is more than many people could ever think of doing, but we have developed our aims and objectives, we almost have our own leaflet, we have recruited some new members and we have done so much awareness raising already.

Two of our members talked to trainee mental health social workers about their experiences and these testimonies that involved unexpected tears were listened to so respectfully, I think that particular session was evaluated as 95% excellent and 5% very good.

They have carried on to talk about their experience at different forums for instance talking about the group and their issues at a national Scottish association of Social work conference, talking to an international women’s group and in other forums.

They have appeared in a feature article in the Sunday Herald, where our confidence in the reporting was already very high because we had had a close association with that particular reporter for years and lastly we have just finished filming a series of very short films about everything from, children’s panels, to advocacy, to foster carers to how to explain your scars to your children.

The first look at the films has been incredible, we hope to finish them in the next couple of months and post them on vimeo so that students and others connected with mental health and our children can really understand the issue from a parents point of view.

I think the single most moving event I have seen in HUG was when one of our Hear Me members was giving testimony about her detention and when we walked into the room we were met with consternation by the course leaders. This was because sitting less than ten feet from her was the social worker who had, a few brief years ago, arranged for the removal and adoption of her children. After some hurried consultations with the social worker and our member we carried on with our presentation; and the dignity our member gave to what she said and the courage with which she avoided what would have been all to easy comments to make to that social worker and the respect which the social worker who remained sitting with us all day gave back have always stuck in my mind.

That I suppose is the lesson I would give about human rights, sometimes it is the smoke filled rooms and the tireless pursuit for justice against nameless enemies but more often it is two very vulnerable human beings reaching out across a great divide to try to understand each other in a safe and respectful environment and out of that, incredible change can occur because this comes from our heart; we are not forced to think something, we are not made to act in a certain way, instead we connect, we understand and we consider our attitudes and our beliefs and we see each other in a new light.

I am going to finish on a last point, we have recently started work in Porterfield prison, it is place of potential division with many prisoners being worried about what would happen if they were vocal in their thoughts, it is a place where prison staff and prisoners alike are worried that too many people are imprisoned because they have committed crimes largely as a result of their mental health problems.

There is so much work to do there, but the very first steps are finding a way to have a voice that will be listened to and which the prisoners feel has a positive purpose.

I leave you with a question, there is growing evidence that trauma in childhood leads to brain development where in adulthood a default response to stress is a primitive reaction that often involves confrontation and anger – the very things that have landed many of the prisoners in prison.

If their behaviour is a biological inevitability, why are they in prison instead of being treated? and yet if they weren’t in prison what of their victims and possibly future victims and where does the whole morass of rights fit in with all this?

It leaves me confused with so many more questions in my head that I will never answer.

Human rights are fascinating to me, does my right to life outweigh my right to freedom? And who decides? Does my right to work outweigh the effect on my colleagues if I act in such a way that I damage them emotionally with my behaviour, could my right to a family life have outweighed the right of my son not to see me?

We need these rights desperately, without them far too much abuse can occur but within the layers of legislation the human connection is vital – without the dialogue, without the reaching out that worry I had at the beginning, the alienation of those that love or support us is far far to easy to create.

In some ways we need to destigmatise and demystify human rights and make them more accessible – I’m hoping the other presenters have helped do that today.

Thank you.