Deciding to return to the workforce, for many positive people, means trading the certainties of life on the pension for the uncertainties of work. One solution, says GLENN FLANAGAN, is to combine volunteering with part time work.
What we do is central to how we feel about ourselves. And for most of us, work is the single biggest chunk of our lives. While the time spent we spend there doesn’t have the same intensity of moments spent being with someone we love, or times with friends, it has a huge influence on our lives, attitudes and identities.
And just as HIV colours, challenges, or even intensifies our sexuality, friendships, and sense of family, it can also deeply affect our ideas about work and occupation.
I was one of those people who had no idea of what I wanted to do until I thought what I was doing might be taken away from me. I was an English teacher when I was diagnosed in 1995. Up to that time, I had always wondered about changing careers but never did.
The treatment outlook was bleaker in those days and all I wanted to do was hold on to everything I already had. I didn’t want to change a jot of my life, and was determined to go to work, come home exhausted, and sweat through the night after forcing down something to eat. Someone told my boyfriend I could go on the pension if I wanted to, but he didn’t tell me that until years later, thinking (and he knew me pretty well) that it would only depress me to know it.
Denial, or grim determination? I’m still not sure.
Then of course in late 1996 along comes combination therapy: it looks like life’s going on after all. I was no longer left hoping for “three good years,” hanging on to my job for as long as I could. But I did spend the next few years thinking “now what?” and wondering what I might be good at.
Another uni course and ‘mid life crisis’ later, I’m working at PLWHA (NSW).
As part of my job at PLWHA I’ve been talking to other positive people who have been thinking about returning to work. I’ve found that it’s often easier to know what we don’t want to spend our lives doing than find what we do want.
One person I spoke to was Neil. “The reason why I’ve decided not to return to the work force is for varied reasons, but most importantly I’m at a point in my life where I just don’t know what I want to do,” he says. If those of us who are working can feel very uncertain about what we should be doing, it can be harder still when you’re not working.
At this stage of the HIV epidemic in Australia, when combination therapy has been around for some time, there are lots of people wondering if they have the energy, the confidence and the financial incentive to take the step back into the workforce. At PLWHA (NSW) we felt there was a need for some step between volunteering and part time work — a kind of ‘work experience’ which could allow positive people to feel their way in an office environment. This is the aim of Positive Decisions, a program which aims to bring about higher expectations about supervision, training, reliability and support than does volunteering.
So far, Positive Decisions has helped a number of people make choices about returning to work and has shown how important occupation can be in promoting our health and wellbeing.
Richard recently considered his own situation and acknowledged how quickly we can lose confidence in ourselves. “Not having any regular or stable occupation I really found myself inadequate to take on any basic work or skills,” says Richard. “And without any recent experience of full-time work, and having no peers in work made it harder for me to make a decision to apply a [nine to five] work ethic.”
We can feel trapped by the expectations of the people around us. Richard felt this strongly. “The challenge was to stop watching TV soaps and then there were the expectations of my friends. Most of them have not sought other ways to move on and actually put me down for doing so.”
Not working for a while can be isolating. I remember stopping full-time work to stay at home and write a thesis. I would get up in the morning with the day stretched out and the dog as the only prospect of company. I quickly got depressed. The undemanding but regular nature of workplace relationships can count for more than we realise and are sometimes all the more important for being taken for granted.
One of the many valuable things the HIV sector offers us is the chance to learn new skills. Neil has been a committed volunteer for several years, developing skills, friendships and connections, and has now found that volunteering has become a main focus of his life. “It gives me the involvement and the human contact that I need to survive, and to keep some form of sanity about my life,” he says.
I never encountered much volunteering until I came into contact with HIV/AIDS organisations. I quickly felt a lot of respect for people who give up time to do any number of things from serving on committees to answering phones and typing, to shaking buckets at members of the public.
Another person I spoke to found that he has lifted his expectations about work after volunteering: “I will never again suffer office politics. I volunteer in an office of congenial people and when I do eventually find employment that is the way I would like the workplace to be.”
It is easy to get lost in major decisions, when life is really often made up of small, incremental moments. Some positive people might be standing back waiting for the perfect job to come along, and sometimes it’s more helpful to see some jobs as stepping stones to what we might really want to spend our time doing.
Stress can also be an important issue for people with HIV. Tim considered the pressures in his former job. “The biggest issue for me returning to the work force has been finding something that I enjoy doing,” he says. “I come from a retail management background and I’m reluctant to return to the stress that the position demands.” For me, after doing a ‘nice’ job for so many years, I was interested in a bit more stress — although the right kind, of course.
And there is the issue of money. Neil has traded a lower income for the chance to spend the energy he has on volunteering. He acknowledges that “on the financial side of things, living on the DSP does have a few disadvantages, but for the most part, I’ve adapted to the lower income scale of life, and have learnt to ‘budget’ with this as my main income.”
Tim is also aware of the constraints of living on the pension. “I also find that I have been left behind by some of my so-called friends because I cannot afford to keep up with their lifestyle financially,” he says.
Returning to work may not mean a greatly increased income for some of us (all things taken into consideration). David, another volunteer currently engaged in part-time work, has thought a lot about this. “Re-engaging in the workforce does involve considering the financial implications. Disability support pension, rental subsidy, pharmaceutical benefits, travel discounts and possibly educational assistance must all be weighed up against the salary available in returning to work.”
He’s right of course, but I often think that, once you’re in the workplace, there may be opportunities for promotion or training, and you are more likely to hear about other jobs which become available. But it is a risk.
Tim has found combining volunteering with casual work at a friend’s business is a way of testing his work capacity and interests. But he is still very conscious of how difficult it can be to get back into the workforce. “I engage in some part-time work every now and then in the art world, and wonder whether I would be better off continuing with that, as it is my hobby and passion, rather than return to the rigors of full time employment,” he says.
Tim has been working as a volunteer while completing a computer course at TAFE. “After talking with a lot of positive people who have been out of the full time work force for a long period of time, I find they all agree that you become comfortable what you have grown accustomed to”.
Tim’s experience is representative of many of us. “Taking the first step to give it all up for the uncertainties of full time employment is the hardest part.”
*Glenn Flanagan* is a Senior Project Officer with People Living With HIV/AIDS (NSW) Inc.
