Hello
As has been said,
I am Graham Morgan. I am a user of mental health services and I set
up and facilitate the Highland Users Group. I would just like to give
you a bit of background information before I start talking of employment.
I am the Advocacy
Development Officer for Highland Community Care Forum and, as part
of this role, set up the Highland Users Group (or HUG) about two years
ago. It has 150 members and nine branches (now 13) scattered around
the Highlands, ranging in location from Skye and Lochalsh to Lochaber,
Caithness and Sutherland.
We meet monthly,
and every two months discuss the same topic in each of our branches.
The results of those discussions are written up into a report. This
report is then presented by our Round Table Group which consists of
elected representatives from each area where we have a branch, together
with people from the Health Board, the various Trusts, the Social
Work Department and anyone else that we think can act on our recommendations.
They are then expected to respond with action that will be taken by
them to what we are saying we want. This sometimes works and sometimes
doesn't.
Each round of
monthly meetings involves between 50 and 80 people. In addition, we
have various committees of HUG. These are still developing but the
most active is the Media Group. Whilst I am speaking, 5 members of
that group are meeting with a theatre company from Edinburgh, the
Health Promotion Department and Highland Arts organisations to discuss
producing a series of challenging postcards that challenge stereotypes,
and also the production of a video which would have the same function,
and would travel the Highlands and be shown in schools.
In twenty minutes
I am going to try to combine a talk on my experience of employment
with our report on Employment. I cannot do our report justice in that
time and would recommend that anyone with an interest in what I say
speaks to me to get copies sent to them.
On to employment....
To say the least,
feeling runs high on this subject. One of my worst experiences in
the last 2 years was when we were talking about suicide and one of
our members walked into the meeting having been admitted to hospital
3 hours earlier following a suicide attempt.
There were a lot
of tears then, followed by a lot of stories and laughter. However
in the branches of HUG there was often pure anger and considerable
resistance, especially when we talked about improving working conditions
so that we could sustain employment.
When people have
been dismissed because of mental health problems, or not employed
because it has been found out that they have mental health problems,
then talking about such concepts as flexitime, disability contracts
or career breaks seemed to be the height of naivety and made it very
hard to discuss employment.
This leads on
to discrimination. First of all, the majority of members of HUG had
not heard of the Disability Discrimination Act and even more did not
realise that it applied to them. We knew what obvious discrimination
was. For instance not being employed because you have had a mental
health problem, but we had little faith in any law, however well enacted,
being able to prevent this.
How do you prove
it? To us the main thing that needs to change is the attitude of society
and employers in order to make employment feasible, and this is showing
little sign of changing.
In matters like
race and gender it seems to be accepted what discrimination is. With
people with physical disabilities it seems to have reached our consciousness
that sticking stairs in front of someone in a wheelchair and saying
that is the reason they cannot do the job is blatant discrimination.
But what is discrimination with us?
I would love
someone to tell me. I find my job quite stressful and I know that
I am prone to cracking up when I am stressed. If, in a few weeks time
I were to crack up and spend a considerable time off work and eventually
ended up being dismissed, would I be being discriminated against?
I have to go to various medical appointments such as to see my psychiatrist,
my CPN, my psychologist and to get my injections. Is it discrimination
that I have to take time off in lieu to do this when that applies
to everyone else in my organisation? I find myself very confused about
this.
When I first came
into a position where I might consider working I found myself unable
to do so. I had been diagnosed as having a personality disorder and
had very little contact with services. My life was in turmoil, my
memory is of sadness and confusion, and ideas swirled in my head of
being in some pit where the only relief seemed to be overdoses and
cutting myself up. There was no way that I could work. The concept
of that was as alien as the concept of thinking positively about myself.
That was at a
time when the media were talking of the scroungers of the welfare
state. That affected me. I would say I would like to work, but I couldn't.
If at that time someone had come along and said I needed to go onto
some scheme to get me into work I would not have been able to co-operate.
This is something that HUG is very clear about.
Although most
of us would like to work, for some of us this is impossibility. We
should be allowed for the sake of having a good quality life, and
in order to maintain our health, to make the decision that work is
not for us, to not feel ashamed about this and to know that there
will still be in place ways of making sure that our life is as enjoyable
as possible.
As the months
passed I slowly realised that I wanted to do something with my life
and, more specifically, that I wanted to help other people with mental
health problems. I made a decision to do voluntary work and, for one
of the only times in my life, encountered the situation experienced
by so many people with mental health problems, to tell or not to tell
that you have mental health problems. This is something that causes
great anger to members of HUG. I will never forget coming up to the
organisation and my words feeling blocked in my throat when I said
that I wanted to do voluntary work, but that I also had mental health
problems. I was very relieved and very embarrassed when I found out
that this was no barrier.
Voluntary work
was, for me, liberating and the start of my route back to work. I
don't think that I contributed much to the organisation but I felt
worthwhile for the first time in a long time. I felt needed; I felt
that there was a reason to get up and the beginning of a structure
in my life. Slowly, as I gained friends and increased in energy, I
began to contribute more and with the assistance of the voluntary
organisation became involved with a group of users and volunteers
to set up a user run drop-in centre called McMurphy's - which I believe
is still running today.
At this point
work was still something a long way from my mind, but I felt that
I was contributing to society and was prepared to live with very little
money. Something happened though that transformed my life and made
work become a possibility. I already had a small but close circle
of friends, but I also met my wife. I am afraid that I will get sentimental
here but, from loneliness and from still thinking that taking a razor
blade to my wrists was the most positive thing I could do, I found
love, confidence, energy, a belief in myself, and a wish to do things
to celebrate the trees and the grass and the skies. To my mind the
route back into work can need some elements of this to somehow find
energy and a belief that you can do things.
To start with
we did a lot of travelling and then I got a job skippering a yacht
in the Far East. It was a job without much pay, without terms and
conditions or job descriptions or any need to admit to mental health
problems, which I didn't. For nearly two years I was in charge of
a very expensive boat and responsible for the people in it. I left
sadness behind me, and found joy and a tiredness that I felt I deserved
rather than endured. Getting back to England and then moving to Scotland
I was both brown and healthy.
I had navigated
through coral reefs, I had sailed into minute inlets in the middle
of the night with rain making it impossible to see, and I had tacked
down the coast in 50 knot winds whilst avoiding the coral and the
oil rigs. I felt so happy and in love - I felt I could do anything.
I joined a self-advocacy
group called "Awareness" in Edinburgh and looked, without
success, for a variety of jobs. One day I found myself being asked
to be a part of the panel to interview someone to become a worker
who would set up a collective mental health advocacy group in the
Lothian's.
It slowly occurred
to me that I could do the job myself, and with help from friends who
told me what c.v.'s were and helped me with typing and phrasing my
applications, I applied for and got the job. I was so surprised. What
was I going to do with all this money? At first I was going to give
half my salary away, until my wife got me to see sense.
One month before
I got the job I had got married. Two days after I was offered the
job my wife found out that she was pregnant. Seven and a half months
later we moved into our first house of our own and two weeks later
our son was born. Five months after that I was in hospital with someone
within arms reach of me 24 hours a day.
My life had changed
dramatically, which maybe accounts for the first of my proper breakdowns,
but I would say that a lot of it was also to do with my job. I had
never had a real job before. I had no training in community development.
The eyes of a lot of people were on a project employing a user in
a high profile position and I wanted to prove that I could do the
job and was desperately committed to it. I worked, and I worked, and
I worked.
I didn't know
that when you worked over your hours you could take time off. I just
felt confused when people talked about toil. I didn't have a manager
or supervisor, apart from a Management Committee, and worst of all
(to my mind) I didn't know that I was doing a good job. People forgot,
or were too embarrassed, to say that I was doing well. I so much wanted
to prove myself and didn't have the confidence to realise that I had
already.
Things changed
after I cracked up. There were a very few people who said, "what
do you expect to happen if you employ a user in such a job",
but the rest were amazing. Sometimes too amazing so that I began to
think that if I had another visitor in hospital I would really crack
up. I was given sick leave over my entitlement, and also allowed to
come back to work at whatever hours I felt capable of until I was
ready to work full-time again.
Over time I continued
to have breakdowns until finally I was diagnosed as schizophrenic,
but work became much easier to cope with. First of all I was helped
to stop working over the hours that I was meant to. People began to
start giving me feedback (positive and negative) about the quality
of my work, which was both gratifying and helped me get things in
perspective. We also began to expand and recruit more members of staff,
most of whom were users of mental health services.
This was superb
at the time because we all knew where we were coming from and could
make sure that each other went home when we seemed to be getting ill
or having a bad day, but perhaps more importantly, because there was
a communication and a lack of shame about what we were going through.
I left that job
two years ago and moved up to the Highlands. The work environment
is, I suppose, truly mainstream but I now have the confidence to cope
with it and work in an environment where, despite working too many
hours, I don't find my mental health suffering.
I have superb
regular and constructive supervision and I have feedback that reassures
me that I am doing my job well. I do a job that I believe in and enjoy
tremendously, and I receive support from outside work by being able
to talk over my concerns with my psychiatrist and CPN who much prefer,
it seems, to talk about life than symptoms.
That is a brief
history of my transition from not being able to work to full-time
work whilst still having mental health problems. The HUG report on
Employment reflects many of these points, but in a more formal way.
I would just like to go over a few of these to try and tie the strands
of this talk together.
First through
I would like to talk about disability discrimination. From what I
can gather this rests on the social model of disability, that the
problems of disability are caused not by the condition but by society's
reaction to it and the barriers it puts in someone's way. This was
developed by people with a physical disability, and seems to have
been extended to people with a disability caused by having mental
health problems.
In many ways I
agree with this, but I would also say that this philosophy would say
that deliberately excluding people from society because of their disability
is wrong, and yet on occasion when I have been ill I have thought
it right to be excluded, and on rare occasions have been grateful
(in retrospect) that I was forcibly detained on a ward, I wonder -
does this tie in with the social model of disability, and is it therefore
applicable to us?
Let me also use
two examples to do with employment. Among the things I do when I get
ill is to think that computers are full of evil spirits and that the
rooms that I enter can become infected by my presence. That is not
my fault - it is my illness or disability, but if it happened a lot
I would totally understand not being employed in an office where people
have to meet and where lots of computers are used.
The other example
is that I occasionally used to work with someone who, whilst being
highly intelligent, amusing and organised, also suffered from severe
depression. Work would be characterised by great sensitivity whenever
there was any hint of criticism, and absence from work due to depression
whenever there seemed to be problems looming on the horizon. The consistent
negativity completely wore me down. Again, it wasn't his fault, it
was the fact that he had depression, but to what extent is it justified
that all the people's work around him suffered also.
I don't know the
answers to these questions, and I feel that I may be being less than
politically correct, but I do have the feeling that our illnesses
can be so severe that it would be very wrong for us to claim discrimination
when work for those around us becomes unmanageable, but then if I
were sacked now because I have mental health problems, I would be
the first to be furious.
To my mind we
need to have a debate about what is, and what isn't, discrimination
with regard to mental health problems and so far haven't heard any
satisfactory answers - maybe I will today.
The first thing
we talked about when we covered employment in HUG was why we want
work and, in common with many other studies, we found many reasons
such as:
Yes, as is fairly
obvious, we work for many reasons, but even more obvious to HUG is
the principle reason that we work is for money. We want to be able
to live above the poverty line, to be able to own our houses, or to
have a car, or to go out for a meal, or buy cigarettes, or to be able
to provide for our children. I love doing this job, but if it paid
out very low wages and another more highly paid (but less enjoyable)
one came up I would take it.
Why do I say such
a basic thing? I suppose because I get the impression that some employment
or training schemes seem to concentrate on getting people into any
job at all and I have an objection to this. Employment for the sake
of a statistic seems a meaningless objective. Members of HUG are very
keen to see training schemes tailored to the wishes, desires and abilities
of the user with a real prospect of work at the end of it and a mutually
agreed idea that there will be an end to the training. Gardening schemes,
for example, may be very good for some people but to my mind they
have very little to do with getting people into employment.
When considering
getting into employment, as you will all know, many of us face a benefits
trap where it is hard to earn sufficient income to make it worthwhile
coming off benefits. As I said, with money being the primary consideration
for taking up work, there is often a disincentive to look for work.
HUG is keen to
see a minimum wage, a fast track system back on to benefits if a job
doesn't work out, and at least a top up to keep people on the same
(or more) income if they come off benefits to work. I believe that
some of these things are being considered.
Many people in
HUG saw no point in looking for work. In our area there are not many
full-time or well paid jobs, and because of society's attitudes to
us many people thought of us as being at the bottom of the heap as
regards job prospect, with a whole raft of people above us all likely
to be offered a job before we would be.
If work becomes
more of a possibility for us we want it on our terms. We don't want
to be the people with mental health problems a company employs because
it has a social conscience or the people to be kept an eye on and
cosseted and not strained too much because of our illness. We want
real work with real pay.
Having said that,
we do want the work place to change, but for everyone and in such
a way that it becomes easier for us to contemplate work. As many of
you will know, work nowadays can be a stressful, competitive, uncertain
and exhausting thing to get involved with. What is the point in this?
Do we have to punish ourselves in order to receive our pay, or is
it perhaps possible that the workplace could aim to maximise the potential
and quality of life of it's employees by giving them the right conditions
to respond positively within.
HUG has a number
of suggestions for this, which they would like to apply to all workers.
They include:
- Having much
more use of flexitime. This would help many of us who find considerable
difficulty in getting up in the mornings due to the medication that
we are on.
- Having someone
you can talk to at work about the problems that you are having,
or having counselling services that small firms can buy in to.
- Ideally being
able to go for your medical appointments within work time, or if
that can't be achieved making sure that services (especially health
services) provide access outside of working hours to employees.
- Having career
breaks available to those people whom, for whatever reason, have
to leave work for a prolonged period.
Specific to people
with mental health problems and other disabilities, we thought that
it would be a good idea to have a disability contract drawn up after
someone was offered a job in which the adaptations needed to the work
environment, if any, would be negotiated between employee and employer.
We thought that
it would be essential for the workforce to be educated about mental
health so that ultimately their will be no pressure to keep your mental
health history secret, or alternatively to tell all and sundry and
it will become just a part of life. I remember acutely embarrassing
myself soon after I got my present job by making grand announcements
that I was schizophrenic at one of our staff meetings, without thinking
how other people would take it or react, and saying it all because
I felt I needed to establish an identity different to other peoples.
We also think
that it is important for the whole workforce to address stress in
the workplace. A few of HUG's suggestions for combating this were:
