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Many thanks for inviting me here today it is a wonderful opportunity for me to
speak with you and to pass on some of the experience that I have gained over the
years with members of HUG.
HUG is a group of about 500 people with mental health problems in the Highlands
who speak out about their experiences. Put simply we want to change the world, put
complicatedly we want to change the world but we have a huge variety of opinions
about what we think of mental health and mental illness and how we want that
change to occur.
Despite having differences of opinion we do have a great deal of consensus about
what the key issues are for us we developed a list of about 30 priorities for action
earlier this year.
It should come as no surprise to you that Austerity or cuts in services is the biggest
priority for us followed by stigma and especially self- stigma followed by welfare
reform and employment.
I want to weave some of these priorities into my talk but first of all I want to reflect on
the subject of this conference.
Human rights summons up images of banners and placards and marches and
demonstrations, it also summons up solemn court cases and more recently
statements by the UK government on the scary future of our rights.
But let us go back a wee way. The United Nations Declaration on Human rights was
developed by countries across the globe in response to the horrors of the second
and first world wars, it was an instinctive and humane reaction to the most terrible
crimes against humanity and at its heart and its future development was the plea
that no one be punished, excluded, discriminated against because of their race or
their sex or their disability or their religion and so on it was that statement that
says never again will people be slaughtered because of perceived difference. What
it is, is about the essential dignity of all people, the recognition that whoever we are
we still have rights and these are about far more than just the right to life.
And the preservation of those rights is there to make sure that we can walk around
with freedom in our step, with the knowledge that our lives are safe and our health
will be looked after, that we can have families and children and privacy, that we can
have an education and the chance to work as well as other essential ingredients to
our daily living.
It is not just some of us that have the right to this, it is everyone, no matter who they
are or what their background.
I would say that is the core of human rights but I would go back a wee step and
reflect on a HUG focus group meeting we held before this conference and say that
human rights in essence is something very, very, simple and very difficult to
It is the chance for us whoever we are to live with dignity and respect and the
chance of equality, it is the chance for us to be confident in the communities we live
in and the communities that impact on our lives.
It is, in other words, knowing that we all have huge value.
And to be valued, to feel worthwhile, to feel that people care about us and respect
us is such a tremendous wonderful thing. In many ways it is all I want from other
people. If I felt that I had that in my life I think in many ways I might be very content.
And although I am now in my fifth year of detention under a community treatment
order and so could be said to lack freedom and by some people to have my rights
neglected, I feel more cared about and respected than ever I have done before.
I am in love, I have wonderful friends, I have a job, I have a good income, my life is
kept safe even when I try to discard it, I have a health service that for me, suits me
to a T. I bicker with my Nurse and my psychiatrist and disagree about my diagnosis
and what keeps me well but I turn to them when life, as it occasionally does,
becomes dark and grey and almost unbearable and generally somehow they and
the people who love and care for me help me put me back on an even keel.
And saying that, I think to myself am I an appropriate advocate for human rights
when I am so blessed? and I think I am sometimes but maybe sometimes I am not
as aware as I should be when our rights are more a token gesture, more a gloss.
However I think human rights are more likely to be upheld when we get our
relationships right and when we learn to how to speak to each other even when we
have wildly different opinions.
Human rights are sometimes at their best when we can love and respect the people
who in other ways may seem to take away our rights and they in turn can love and
respect us.
And that is maybe very naive but I believe it, without a fundamental respect for
people and for difference we can never achieve what we want when we look at
legislation and the long march for justice.
Because justice is also at the heart of this,
Sometimes I think to myself that we really do not need to study the law to know
when our rights are being broken.
At the time of writing this I am just coming from an interview with STV about the
closure of Cairdeas cottage a drop in centre in inverness by the end of this week
we will have appeared in almost all the local media and some of the national media
about this. In terms of our priorities this is a key area to campaign on, and it doesn’t
matter that the NHS may justify closure on grounds of cost or value, it matters that
some very, very, isolated people will no longer have a service , some people who
shrink from all forms of contact with the NHS will no longer have a safe and
welcoming place to gather and a community that has built itself and cared for its
members over the last two and half decades is going to be ripped apart.
This is something people who work in the field of policy and mental health
sometimes neglect to understand the NHS is also the maker and breaker of
communities, in hospital wards, in community mental health teams, in drop in
centres, we grow together, we share together, we support each other, we learn from
each other. It is this everyday sense of family and belonging , these mini
communities where all the buzz words like recovery and resilience and peer support
have a huge resonance but are rarely vocalised, the places where the real stuff
happens, not for everyone by any means but for a large number of us.
It is those places where we are able to drop our public, smiley coping masks and
know we will be accepted and respected that can make such a difference to so
many people . So when the very communities that promote this; that get away from
the emphasis and concentration on the clinical, the goal orientated, the outcome
measures that are beloved of some and despaired about by many, when these
communities where compassion and support thrives are cut and abandoned
because we are not quick enough to recover or get into employment or learn our
d.b.t. skills, it is at these times that human rights loom large in my mind.
And I am reminded of the focus group we held on this subject and Simon from the
recovery network reflected on something we were saying . He said it could be good
for all of us to become more challenging and less accommodating.
It might be good when a life saving service creaks at the seams if, instead of saying
‘There is nothing we can do about this, it’s how life is nowadays
We paused and questioned why we accept what happens to us.
Because on one level if we are to speak out and work to improve services we need
at the very least to look at all the people who are working in this area and try to
understand where they are coming from, sometimes that raw shriek of
‘ How dare you do this to us?
Is all that is needed but at other times we need to think if we have little money what
is the best way to spend it, if we provide a service to ten people at great cost and
that means that 200 others get no service then we need to look around us, to use
our emotion but also our logic and our reason and our understanding of why people
do what they do, why they believe taking away our lifeline is sometimes justified.
But there is a limit to understanding and there is a limit to the faith we have in each
When one of our members talks about how embarrassed she was to go to the toilet
in front of the cctv cameras in a police cell because she had been lifted because
she was suicidal then that limit is reached,
When a man is imprisoned because he set fire to himself and the NHS would not
provide the background reports about his mental health that limit is reached,
When we watch the twitter feed of a woman discharged from hospital against her
will, taken back to hospital by the police from the bridge she was about to jump off,
discharged again to the point where that very day she drove into a tree and died
that limit is reached.
There are limits to our patience and our understanding everywhere the use of
police cells when we are in crisis, the lack of hospital beds or a safe place to go to
when we are suicidal, the appalling fear people have each time their benefits come
up for review ,the huge number of people with mental health problems in prison, the
high suicide rate of transgender people, the absence of meaningful local services
for so many young people, the despair older people feel when they find people do
not care any more for them and write them off in so many hideous ways and the
terrible, terrible, isolation so many people experience.
We could go on and on , the pain our carers feel, the stress the services are under
even the decisions the managers are having to take daily.
And the temptation is to shout out and to stand witness and to say:
‘This must stop!
Much as I am doing now and I would agree with anyone who would say we must
bear witness to the rising despair so many people feel but I would also say.
When I speak of injustice so does my c.p.n. and my psychiatrist and my m.h.o.
When I look at people making difficult decisions and assume that they do not
understand and are the enemy then I am creating my own stereotype.
I remember a recent planning group meeting I went to where I knew that 80 % of the
professionals present had also experienced mental illness; they were just not so
overtly public about it in the way that I am and so who is our enemy? can we make
people into enemies so easily because of their status and assume they know
nothing of our world?
Maybe when we look at human rights and the need to challenge, we need to build
partnerships and sometimes set aside difference and resentment, maybe we need
to look at the issues we have in common.
The Royal College of Psychiatrists were talking about parity of esteem as a key
issue at least eight years ago and yet such words have only just started to be used
by the user movement, the Scottish association of social work were holding
conferences and campaigns around welfare reform ages ago, maybe they are our
natural partners, the Scottish government seems to put more store by recovery and
challenging stigma than some of us do, maybe we should treasure that. Mary
Scanlon; the Tory MSP in Highland from a party that many of us choose to hate has
been committed to the field of mental health for decades.
When I said human rights is about difference I meant it, but it is not only about
accepting our difference it is about understanding the difference of those people
some of us assume are our enemies and oppressors it is about us accepting we
make people alien too when we generalise and make assumptions about them.
I am going to finish by talking about how we promote human rights in HUG.
We do it just by speaking out, the very act of a community that is marginalised
gaining a voice is an expression of human rights.
In HUG we try to do this by expressing the huge range of opinions of our members
and expressing that great range of opinion and on occasion the great consensus
most of us have on key issues. We also do it by assuming that we have many
natural partners, by assuming the number of people who actively hate us is tiny but
the number who are ignorant or confused or worried by us is high and that with
dialogue we can learn from each other.
We also do it by recognising that we do not have all the answers, just as a jag in the
bum is not the cure for psychosis neither is ecpr or a wrap plan all sorts of actions
and interventions help us and those people who have the arrogance to assume they
have all the answers, whether they be service users or professionals is something
we need to be suspicious of.
In many ways mental health deals in fundamental issues, the despair anyone is
capable of and the joy people seek, as well as illness;: not even the most
charismatic faith leader nor the greatest philosopher nor the most skilled politician
has the answer and the means to solves these issues so it seems to me that we
would do well to celebrate the fact that we are trying to find answers that people
have sought for millennia and yet to have the humility to know that the answers we
come up with are likely to be seen as faulty a scant few decades from now.
Ive already mentioned austerity, how do we challenge this. Earlier I mentioned that
we had been very visible in the press over the closure of a drop in centre, in fact we
had a week of what seemed like back to back interviews, but that only happened
after we consulted over 100 people on their views, developed plans together,
contacted NHS Highland in advance, enlisted the support of MSP’s and councillors
and only after we had given the NHS prior warning did we seek to reverse their
decision by embarrassing them publicly.
I do not think we have a chance in succeeding in our work on this subject and it is
there where I can see the need for a more co operative approach,…… if we were
able to speak with more than one voice we may have more results and more
efficient services, if the various professional groups and the third sector had joined
us on this issue maybe we would have had more chance of success.
Maybe that is a lesson for all of us, I fairly frequently see pronouncements by major
organisations at a national level often on the some of the issues I have highlighted
today and yet very, very, rarely do I see such bodies making their announcements
in partnership with other organisations and even rarer do I see joint statements
made either by the third sector or the statutory sector with service user or carer
organisations. It seems to me that either these organisations shy away from the
rhetoric of service user and carer involvement and empowerment or that they are
wary of organisations that represent users and carers, if they are wary of us they
should do something about this, either by offering their opinions of where we are
going wrong or by trying to further support and develop and resource us .If we are
run ethically and efficiently we could make a huge difference and be ideal partners
on many issues.
What else do we do to challenge austerity? We speak with our politicians, we
comment on policy, we canvass the views of our members and try to act on them.
We also try to find solutions because just saying something is wrong may give us a
good feeling which is in itself important but rarely results in a constructive action.
With stigma, well we have been working on this for the past 18 years, we choose to
address it by creating dialogue and learning.
Stigma is a fairly bland word to describe, prejudice and bigotry, to describe
misinformation and discrimination and to describe shame and guilt and the most
terrible loneliness isolation and lack of hope. And it is not as clear cut as some
people would like to say, some behaviours and experiences are too much for people
to live with, sometimes the isolation is not purely a result of exclusion it is because
those who love and care for us cannot bear the pain they witness in us or
experience from us.
Tackling stigma has always been a positive thing for us. It is always lead by people
with direct experience of mental illness and is never that horrendous situation where
in the name of training a person demonises and victimises the audience they have
been given the privilege of speaking with .
That just doesn’t work.
And yet we work with people who have sectioned us, who have taken our children
off of us, who have refused us benefits . There is room there for tension, I am
always struck by the dignity with which our members speak about the most
traumatic events but without going into the ;
‘It’s you, its people like you who did this to me and how dare you do this to us!?
The story, the conversation, the connection, the chance to see each other in safe
neutral spaces does far more than the pointed finger and the turned back. It allows
all of us to learn and grow. It allows people to reflect and change.
We run some sort of stigma session at least once a month, the last one was with
patient transport, the one before that with health centre staff and the one before that
with home start staff.
The ones coming up are with student nurses and student mental health officers.
These all have a bearing on human rights such as for access to health care, the
right to life, the right to freedom, the right to family life to name just a few.
We also go into schools or to be more accurate SPEAK; the fantastic young
peoples project we run is frequently in schools, speaking to whole year classes,
speaking to p.s.e. classes, discussing issues with staff in guidance and the wider
education field.
Having young people and older hug members tell their stories and show dvd’s they
have made to people in schools makes such a difference, equally taking plays
round the schools achieved similar results as did the distribution of postcards and
our continued involvement in the youth philanthropy initiative.
Challenging stigma has been our priority for so long, it makes such a difference to
our lives to see people understand and in turn share their views and opinions and
as part of that to find our expression of difference and bewilderment, our vision of
justice and friendship, our vision of what real inclusion may mean is being heard;
well that is wonderful.
When I talk of welfare reform I find more consensus among our members than
anywhere else, the brutal imagery of the media and many politicians excludes
alienates and does indeed drive some of our members into illness or thoughts of
suicide, it prevents many from even applying for the very benefits they have a right
to, it alienates and impoverishes whatever vision many of our members may have
felt about being a part of a caring society that would treasure the different levels of
contribution we can all bring to it.
And I know I have been calling for a form of understanding of others when we look
at what may be seen as oppression, even if only to help us plan how to speak out
properly but in some areas it really is the people who can pore through legislation
and human rights acts that we desperately need.
We have, amongst our volunteers in HUG, two very skilled welfare rights workers,
their knowledge of the field and ability to give an expert opinion is wonderful. These
members among others have given speeches on the subject at a Highland level and
a National level and have created a great bond with the Highland network of advice
But they and others have also helped with our training of psychiatrists and benefits
staff and our submissions to committees looking to change legislation. And our
successful work to see more funding for specialist mental health advice by advice
One of our members posts frequently on our facebook page about changes in
legislation and provides information that will affect us, hard things to look at but
useful and important. As our facebook page has over 800 likes and over 1500 visits
a week it is one way of getting a point of view across and basic information to our
I am a wee bit fed up with my words now which is a great pity as I really want to
engage with you and interest you but even the most engaging speaker loses people
after 20 minutes or so, so I will begin to wind up now.
The last of the priorities I mentioned was in the area of employment. We haven’t
done much here lately but it gives me a theme with which to finish on when we are
looking at human rights.
We spoke last year with over 100 members of the Care Inspectorate on a healthy
workplace. The talks that one of our members gave were wonderful and, we feel,
resulted in a real willingness to look at how the workplace can be kept mentally
healthy in a large busy organisation.
We had a volunteer, in fact he still is a volunteer, someone very busy with ideas
around peer support and recovery. He has raised its profile in a major way in
Highland and now has employment as the first peer support worker in highland and
that is where my last point rests.
Human rights and mental health is everyone’s business whatever our elected
politicians may think, they are the bedrock on which communities and individuals
can feel safe and secure and respected, without that protection many people in
society especially those people who are already excluded are very much at risk.
But our volunteer who got himself a job who took personal action is something to
remember, our members love the fact that we speak out together and create
change and that sometimes we do it in a fun way too we are just finishing a three
day weekend at Scotland’s creative writing centre, creating art work and writing for
an exhibition on mental health but also the travelling community as I write this. It has
been a time of laughter and joy and yet, when I look at self stigma which many of
the people here experience that can be all the negatives: the shame, the guilt, the
isolation, the lack of confidence .
If we are to challenge that then we need to work to find and give each other the
skills to take our own action as a community and as individuals and that involves
more than talking about how awful life is. It is also about having fun and sharing and
supporting and communicating and making positive change both for us and others,
its about giving each other the courage to step beyond the awful staleness that a
lack of motivation in our live creates and an alienating society imposes on us .
When we know that some things are fundamentally wrong and when, as a
community we can speak up about this, then change is really on the way and when
other communities join us and we join them to highlight the value every human has
whatever their background, origin, skill base or status then we can really start to see
something wonderful happen.
Thank you
Graham Morgan