Curved Graphic

Getting Back to Work -
Pavillion Conference on Employment, January 1998

 
 

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:

  •  It gives us status in society.
  •  We don't have to rely on state benefits - of which we are often ashamed.
  •  It gives us increased self-esteem and self-respect.
  •  We feel that we have something to contribute, are useful and valued.
  •  We are able to meet with and talk to other people.
  •  We have something to do.
  •  It makes it easier to deal with society's expectations of us.
  •  It is part of proving that we are part of society.
  •  For some of us we are forced into work when our disability benefits are cut, as seems to  happen more often.

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:

  • It is important for people to enjoy their job and to have time to laugh and smile. There seems to be no reason why employment should be a time of drudgery and grimaces.
  • Everyone should have access to regular supervision and appraisal and positive criticism.
    It is important for people to recognise and act on the stress they are under.
  • There should be a limit to the hours that people work.
  • People should be encouraged to take regular tea and lunch breaks.
  • People should gain an understanding of their own capabilities and limitations.
  • On people's bad days we should be encouraged to do things at our own pace and to do easier or less stressful jobs.

The last thing that I will talk about is having to leave a job because of illness. This is traumatic in the extreme, and leads people to have to re-evaluate their lives and values. Many of our members have spoken of the extreme feelings of failure, lack of worth and rejection that they have experienced when having to be medically retired.

Positive ways of handling it were to look on the whole process as a failure in health, not of ability or worth. It was also said that the whole process should be a mutual decision. Too many people spoke of having retirement imposed on them. It was said that any supervisor doing their job properly would have started discussing the possibilities long before retirement became the only alternative.

My last words are for members of HUG. Employment is an ideal. It is something that it would be lovely to have, but it is not the only option. You can have a quality of life out of employment, and should feel no shame for it. For employment to become a reality for us we need to change the attitudes of the employers and the workforce, and to make the work situation something that is tenable for all of us that want it.

A place to start, as many HUG members say, is in the statutory agencies charged with helping us - when users are visibly, happily and productively employed by them then perhaps others will follow their example.

Then perhaps others will follow their example.

 

 


Highland Users Group
Tel: (01463 723560) — Email: hug@hccf.org.uk

 

 

 

 

 

HUG Talks - Getting Back to Work