fbpx

Clare- CF and Work

She may enjoy clowning around for a living, but when RED chatted to Clare recently about her work experiences, it became clear that this inspirational lady has been extremely savvy in planning her life from a young age. Clare has worked really hard during her life to ensure that she is financially comfortable and has always pursued careers which she enjoys and is passionate about.

What sort of studies and work have you done?

I studied a Bachelor of Arts in Communications, Theatre and Media at Charles Sturt University in Bathurst, NSW. While studying at university I also had a weekend job as a clown for a local ice cream parlor. I discovered I was a great clown, it came really easily to me and I had a fantastic rapport with children. Once I completed my studies, I worked as an assistant stage manager and a production assistant at the Sydney Dance Production Company. During my time as an assistant stage manager, I realised I wanted to work with children, so my next job was as a nanny for a family in Sydney.

The family I nannied for conveniently left an article for me to see about the Humour Foundation and Clown Doctors which really captured my attention. I decided to write the organisation a letter about what type of clown I was and to ask if they thought I would be a good fit to be a clown doctor at the Sydney Children’s Hospital. It turned out that they did need a new clown doctor. I was asked to go on an observation round at the hospital with an experienced clown doctor.

After I completed the observation round I was asked to do three trial rounds where I performed with a partner. I was given the tick of approval and was able to work as a clown doctor once a week, while I still worked as a nanny. I also worked at the local community centre in the school holidays, with children, as a workshop facilitator teaching drama and origami amongst other activities.

At the end of 1999 I decided to move to Perth to continue my studies and complete a Graduate Diploma in Primary Education during 2000. While I studied I began developing my own independent contractor performer business.

I intended to return to Sydney at the end of my studies, but the Humour Foundation gained funding to set up a clown doctor program at Princess Margaret Hospital (PMH) and they asked if I could stay in Perth longer to assist with coordinating the program on a voluntary basis.

Once the program was set up at PMH, I worked one day a week as a clown doctor and was also involved in raising awareness and promoting the program to medical and nursing students. Initially many medical staff at PMH were wary of clown doctors but now they are much more open to the idea and are aware of how clown doctors can be a very good distraction for young children who are in hospital facing things like needles and surgery.

While working as a clown doctor, I also worked casually as a teacher and then I went to South Korea for a year, teaching English through Drama.

When I returned I concentrated on teaching casually and also built up my performing business which over the years expanded to the point where I haven’t needed to do casual teaching any longer.  My business is called “Sensational Stilt Walking, Stories and Silliness” and I do a whole variety of performance work, from Christmas parties for Rio Tinto, libraries for children’s book week, and a whole lot of different festivals.

How have you balanced your work life with taking care of your health?

As an independent performer I am able to set my own prices, budget for sick leave and if I am not well enough to do a performance I can contract another performer to do the job. I am also able to adapt the performance to what I can do at the time, for example if my left hand isn’t working too well (rheumatoid arthritis) I will keep it in my pocket and rely more on my wit to be entertaining. If I am working with other performers, roller skating or stilt walking or the like, I will let my colleague know when I need to entertain in a less active way e.g. stop dancing, sit down, and clap along while they dance instead.

I have had times when I say no to gigs, as I predict I will be too sick. I am also able to choose work where the performance doesn’t start until after 10am, as early mornings are often busy with airway clearance and other treatment. I now say no to jobs where there is not easy access to power e.g. in remote locations, as I need to do my nebs.

From my early twenties I have always wanted security, to be financial comfortable and to be able to choose work I am really interested in, rather than doing something I don’t want to do.  I also chose work which could help with my CF. When I was in high school I really wanted to be a jeweler, but I decided that drama and movement would be more suitable because it is much more active.

When I was in my early twenties I thought that I would need to retire by the time I was 35 so I would need to start investing to be financially comfortable once I reached my thirties. Over the years I have bought investment properties, which earn me a passive income, instead of putting my money into superannuation. My investments have slowly built up over the years. If I need to have a lung transplant, or to slow down with my work, or even retire, I have enough passive income to cover basic needs and a little bit more. Due to things like having rheumatoid arthritis I will need to be able to afford extra equipment which can make everyday life more comfortable.

Have you always disclosed that you have CF during a job interview, or once you have got the job?

Before starting work with Sydney Dance Company I was asked during the interview if there was anything they needed to know about me. I decided not to tell them that I had CF.  While I was working there (it was before occupational health and safety standards were a big thing) I had to spray paint something, so I asked for a mask, to protect me from the fumes. They asked why (as no one used masks then) and I told them I needed to protect my respiratory health due to a chronic respiratory condition. That knowledge caused a bit of a stir, a slight panic…. Maybe it contributed to things not working out in that job, maybe or maybe not.

While working as a clown doctor I have disclosed that I have CF. There are places where I can’t go in the hospital such as the cancer ward with children who are highly immuno suppressed.  When I visit the respiratory ward at PMH, I check with the nurse manager to see if there is any room where I can’t go. When visiting children with CF, I sometimes stand just outside their room, while my clown doctor partner is able to go in, and I heckle from the doorway.

I have also had to explain about my coughing, and that the bacteria I carry is not contagious to people with a normal immune system, while working as a clown doctor.

For my performing business, it is not usually necessary to disclose that I have CF to the clients, however if I am working with colleagues I will let them know so they understand why there are some things I can’t do or why I have to eat at certain times (due to CF related diabetes) or take medication. Letting my colleagues know about my illnesses helps with my working relationships, and avoids misunderstandings for example; I’m not pulling a face at what they said, I am pulling a face because of a sudden pain or discomfort (but also that pain will not stop me performing/working).

Any tips for young people with CF who are planning to enter the workforce?

My advice would be to plan way ahead so you have more options in your life. It is good to consider early on in your twenties what you want to be doing in your forties and fifties. Money doesn’t bring happiness but a certain amount does make life easier and it is good to be able to cover bills and purchase items you need. It is good to look at how much money you need to earn, and save, so you have options later on. Look for ways to increase your passive income (income you don’t directly work for). This can really help, such as having a term deposit where you earn compound interest over the years.

My other tip would be to really enjoy the times when you are well, and to allow yourself freedom to do the things you want to do. Think about this: is CF illness actually holding you back? Or is it your personal fear of CF and future illness that is cramping your fabulous style?

 

Article from RED Magazine, Spring 2014.


2020 © Cystic Fibrosis Western Australia Privacy Policy | Refund & Delivery Policy | ABN: 19 156 339 182