Hello
As has been said
I am Graham Morgan and I work for Highland Community Care Forum as
the Advocacy Development Worker.
This really means
that I work with the Highland Users Group who represent people with
a mental illness, and with People First in the Highlands, another
advocacy group that represents people with a learning disability and
lastly in the development of a Highland Advocacy Strategy.
In the next twenty
minutes I will talk about the stigma of mental illness from a personal
perspective and Emma who is the HUG Communications Worker will talk
about what we have been doing in the Highlands to challenge it.
A couple of weeks
ago a friend gave me an old second hand copy of a book written in
the year that I was born. It is called Stigma. I've only read a few
paragraphs of it, but it seems to me that the stigma that I have grown
up to experience in this new century is very similar to the stigma
that Erving Goffman wrote about in 1963. Public attitudes to people
with a mental illness have really changed very little in the last
37 years, which is very sad.
I have a mental
illness, which has been diagnosed as schizophrenia. Sometimes the
things that I go through are horrible, but for the vast majority of
the time I live a happy and enjoyable life. However, as we all know,
for many people, mental illness can be a debilitating and traumatic
experience. It is an attack on fundamental perceptions of self and
reality and the possibilities of happiness.
Once people have
become mentally ill it is possible to be excluded, to be seen as different,
as a threat or a burden and an embarrassment. It is possible that
you will be avoided, talked about maliciously or as a problem, that
you will lose your friends and that in the extremes that you will
be actively persecuted.
I could almost
stop here. To think that people, who through no fault of their own,
have slipped into an illness, from which there is sometimes no escape
and little hope should then, on top of that, be looked on as separate
and inferior that they should be put apart as different to everyone
else, that they should be judged on something that they could do nothing
about, is frankly obscene.
It is something
for which we have no excuse, no let out. As a society we have a responsibility
to treat people with respect and fairness, and should embrace the
different experiences we can all bring to it. We all have to stand
up and admit that we have all failed people with a mental illness.
Whilst I believe
all that I have just said, I would however say that stigma is more
complicated than this. It is everywhere but it is not always intentional.
It can be both melodramatic and subtle and we as people with a mental
illness, can ourselves, live up to its stereotypes, deny it even exists
or even encourage it.
Our perceptions
of mental illness are a medley of our upbringings, our cultures and
values and everything is swirled around and mixed up. Nothing is really
black and white. As a person with a mental illness I do not consider
myself to be a permanent victim. I do not feel oppressed by society
or the words used about people like me and yet at the same time I
do.
I am going to
use myself and those around me as an example of how stigma is confusing
because like many members of HUG, I have never felt overtly discriminated
against. No one has spat at me, no one has refused me service or denied
me employment because I have been ill and yet the feeling of difference
exists.
My son is eight
years old, along with me wife, he is my joy. He is the most important
person to me. I love him and he loves me. We go bicycling together
and walk along rivers and every night we read his bed time story together
and often he will talk ten to the dozen and I will ignore him and
he will get cross, in other words we have an ordinary family relationship.
Yet every day
my son will call me a nutter or a weirdo or sometimes a lunatic. Sometimes
I feel a tightening in my heart and I want to cry out to him to stop
it. Sometimes I feel angry and I want to shout at him that yes I really
am a nutter and does it matter?
My son has picked
up these words from the playground. He has little sense of what the
words mean and no idea of how offensive they really can be. They are
just fun and it's nice to use them with daddy because we all know
he doesn't really mean it and that daddy will often laugh.
I suppose that
with those innocent actions we embrace a whole world of stigma.
Most people use language about us that is derogatory and that demeans
us as a matter of course; in the papers, in the jokes, in the films
and comedies. It is a devise for a few laughs and a compelling headline.
It is both deeply malicious and completely irrelevant to our lives.
The other side
of my son's comments is the fact that he has no idea that I have ever
been really mad or really a nutter. He knows that I have an illness,
but he does not know what it is and is not very interested in it at
all.
You will hear
later that we are going to be doing work in schools but at the moment
I have no idea of how to tell my own son about my illness. How do
you sit down with someone who is unaware and unprepared and talk about
the times that life is unbearable. How do you say to someone who is
so good at enjoying life that his whole body wriggles with excitement,
that sometimes his daddy takes a razor blade to his own skin and that
once his daddy's only wish in life was to continue stubbing cigarettes
out on himself, that sometimes his daddy thinks that he is so evil
that he wants to be isolated from everyone else.
I don't know how
to do this. I know I should but even as I write this I feel my stomach
churn with the hurt of it all to talk so close to home to a child,
to change our illusions and perceptions about who we are in each others
eyes - it frightens me.
Stigma as I think
I have just shown is not an 'other' people thing. We are all fully
signed up participants. We are all people who have been brought up
in it. We have all been brought up into the idea that life is about
laughter and loving, It is ideally about success and glamour and possessions.
We are meant to be dynamic and rational and healthy and good at talking
and socialising. We are meant to be in a world where life is all about
living.
And so, for some
of us, the greatest stigma comes from us. It colours our lives and
is reinforced by the illnesses we have, so that although we can say
this life is purely a result of my illness and not our fault, many
of us can't believe it; when for us the sun loses its joy, when life
becomes a pale mockery of what we had wished for, when those around
us echo back our pain, when we lose our jobs and don't complete our
education, when there are devils in the glitter of a summers day we
feel that we have sinned not only against ourselves but also against
those we love and all those things we have been taught to wish for
in our lives.
Illness stops
being relevant and it all turns into the question of how bad we really
are to ourselves and those we love. It is not so easy to say that
the sadness is not our fault that we are not responsible when everything,
ourselves, the nature of our illness and our society conspires to
say that it is.
Not talking is
the cloud that creates stigma. When I first became ill, when I first
wanted to die, we agreed that my grandmother would not be told because
she was from a culture and of an age that could not accept such things,
and yet although I know she wouldn't have understood I think I would
have liked her to know, especially as she also nowadays spends a lot
of time wishing that she too could die. She often thinks people are
stealing from her and very rarely has much memory of who her grandchildren
are and almost none of her great grandchildren. This secrecy this
desire to protect only damages ourselves and reinforces the ideas
or wrong doing.
Stigma is the
clouds of blame we wheel around ourselves. There has always been a
moral question about illness and its causes.
For me - I became
ill just at the tail end of when it was still fashionable to blame
families for illness and really what better reason when you are young
and angst ridden than to blame your family? I hated my family in those
years that I was becoming an adult and blamed them for what I was
going through and sometimes I still do.
The first my parents
knew about my attempted suicide was when they received a benefits
form to fill in from the hospital. Sometimes I try to understand what
they went through. To know that your child wants to die must be a
terrible, terrible blow but to be told that he won't see you and that
he blames you for his misery is a shock and a blow that must be a
wrenching agony to live through.
I remember that
they often said that if only they could go through what I was going
through they would. I remember they reached out and I would not respond
and really there, you can understand stigma because there are wounds
that will never heal, that will always be feared and not spoken about,
for the very pain that they cause and mixed in with it is a shame
that cannot be justified and cannot be shaken off and in that guilt
and fear we build up differences that set us apart.
Stigma is not
just about pain it is about an illness that is full of social consequences.
No illness exists in isolation. It can damage and wound all those
who you hold dear to you because illness of whatever kind is not pleasant
and easy to bear.
Recently I was
sitting down with my wife and we remembered a time I had forgotten
about. A time when I was trying to convince the doctors surgery that
it would have to be sterilised after each time I visited it, and at
such times you remember that once life was a place of optimism, when
the phrase of "in sickness and in health" was a glibly given
promise, a freely given commitment with little idea of what can happen.
When my reality
splintered those shards were not pretend. For a time the commitment
my wife and I had given each other was also close to bursting. When
the person you love is in another world and they have become a stranger
to you, all the promises and hopes you give so happily to each other
become a mockery to your dreams and it is only with huge effort that
you can both keep together and try to build lives that you hope will
sustain themselves in the future even in the face of uncertainty and
fear of what could happen all over again.
When those that
are close to you find that the pain is too much and curse the illness
that has stolen you, you can understand how people come to fear it
and in the disintegration of love and family you can see the growing
power of stigma.
I shall not carry
on my story too much longer but I do have a few more examples of the
way stigma and shame can enter our lives so easily.
The services that
we use have a history that cannot be ignored. However much they may
ultimately help, they can also be about a form of control that is
hard to accept and can seem, through their own at times barbaric history,
not to be the place that people inevitably turn to when they fear
they have become ill.
They can come
to symbolise fear and failure and punishment. I am sure that those
are some of the feelings that went through my sisters mind when a
health visitor suspecting postnatal depression made arrangements for
her to see a psychiatrist, an appointment that she wanted to keep
but did not attend for fear of what would happen to her and her baby.
Psychiatric services
have a huge image problem to overcome before we can feel free to ask
for help and to be open with those who are there to help us. When
we fear the very services that help us then the existence of stigma
is of little surprise.
As you might have
gathered a lot of my identity is based on what I have gone through
when ill. Illness and disability is as much a part of my self-image
as those events in my life where I have experienced times of beauty
and joy and wonder.
I find it hard
to feel comfortable with people who have not experienced illness.
There are things that other people cannot understand or appreciate
if they have not seen it or felt it.
Recently I met
a friend of a friend who knew I worked in mental health but not that
I had been ill. When after a little tentative and frightened discussion
we realised that we had both been mentally ill, the tension of do
I or don't I admit it disappeared to be replaced by a feeling of ease.
You can see this in drop in centres or places that we meet.
Sometimes I think,
when seeing my friends and acquaintances at ease and making jokes
of the most awful situations, that some of us who have a mental illness
do have our own culture. Although we are equal members of society
we also have an identity that should not be subsumed by attempts to
make us normal or ordinary or conventional in the name of inclusion.
Equality does not have to automatically mean integration and sometimes
it is easier for a time to be around those we consider our own.
For me being diagnosed
was a liberation. It gave justification to what I was feeling. It
gave legitimacy to what I was going through and gave me something
to come to terms with but, as we all know, some diagnoses carry with
them echoes that determine how we treat people, not how we treat them
as individuals nor how we respond to a persons problems, but how we
slice a person into a set of generalisations that have little to do
with that persons identity or reality.
I have felt this
as a father, when various sets of people have in turn thought that
my son may be epileptic or have aspergers syndrome or perhaps attention
deficit disorder and there you can see the dangers of our labels,
to put a series of disorders layered and bound up with assumptions
and generalisations onto anyone is wrong, to do such a thing to an
eight year old just beginning his life feels repugnant and in this
belief where we fear even to name the problem we can see the power
of stigma.
What I have been
trying to do is to show that even in a family such as mine or maybe
yours that would normally say it has been free of stigma, that we
are not. The stigma of illness is in all of us whether we want it
or not.
Our actions are coloured both by the image and mythology of illness.
Our perceptions of how people should act in our society, our own self-image,
the illness itself and the history and actions of the services that
are there to help us
Fundamentally
it is our belief in what is normal and acceptable that damages us.
We all set impossible
standards of success and happiness and when we are not berating ourselves
for our own so called failings we can leave those who don't succeed
behind on the different margins with which we draw up our pictures
and images of the worth of other people.
I haven't given
much of a rural context to this. In HUG we do a lot of media work
and whilst I have said that I have never been discriminated against,
I don't give my personal story to the media. In the back of my mind
is what could happen to us with the wrong sort of rumours in the village
in which we live. It's not a paranoid fear either.
Although local
communities can give a support and backing not found elsewhere the
lack of anonymity and the ability to come to the wrong conclusions
have led to a few people in the Highlands being beaten up, ignored
and even forced to leave their communities.
This type of action
is not something that just rests with prejudiced people coming to
ignorant conclusions. I know of doctors who have called people with
a mental illness wicked and evil, who think that it is a problem confined
to the homeless and unemployed who call a cry to be helped a sign
of attention seeking and manipulation. In their own way these sorts
of actions are just as damaging.
Do any of you
know those times when life is so hard that you cannot do basic things
like deal with money without fumbling it and getting confused?
A friend of mine
did this on the bus not so long ago and in scenes that take you back
to the 60's, the driver said that he didn't know why people like my
friend were ever let out of hospital, and yet here is the difference
and the reason groups like HUG can exist. Although my friend left
the bus in embarrassment and anger a fellow passenger saw what was
happening and complained and the driver was disciplined. Stigma hasn't
gone away by any means, but we are standing at the point where we
cam all give it a shove to send it away.
It is tempting
to leave desperation behind. Sometimes now that I am happy so often,
sometimes when I am sitting at the base of one of the trees in the
garden with a whisky in my hand and horses and rabbits on the field
below I have yearnings to forget all about this.
In HUG we try
to give a wider view. Mental illness is widespread and is horrible
to go through, but it is possible to live with it and to enjoy life,
to make friends, to find work and to have families. It will be a great
deal easier if people let go of the fear that they think that they
have of people like me so that we can all be as open as we like about
our experiences without fear of retribution.
Thank You
