By Jess Kapuscinski Evans.
I’ve been involved in the arts since I was a child, performing in teenage choirs and theatre groups just like many other kids my age. Unlike everyone else, I use a wheelchair full-time and need assistance with most tasks of so-called daily living. I have since gone on to have a variety of artistic experiences both good and bad, including thankfully some paid jobs, the most recent of which involves me working alongside, importantly, non-disabled artists and being treated as a professional. It is because of Theatre on Wheels that I have been asked to write this article about what it means to have a disability and to aim for a professional career in the arts in the 21st century. Currently, my work involves theatre and music, but this does not necessarily mean that I aspire to create Broadway musicals. I enjoy theatre with visible live musicians, and I like writing music in other styles such as blues, which is “theatrical”, in the sense that it has plenty of drama and tells a story.
The need for creative output is demonstrated by the fact that across the world, and throughout history, all cultures have found ways to make art
I want to stress that I am hugely thankful for many of the good experiences I have had as an artist. It is just as important to celebrate the people with and without disabilities who have inspired me or taught me some of the skills I have today, as it is to criticise the shortcomings of the various arts industries. I want to talk in general about the obstacles that people with disabilities face, both with respect to participating in, and going to see art. I will also share some of my personal experiences.
Many of the problems within the arts sector are widespread issues for people with disabilities across Australia. These issues include the inaccessibility of many public buildings, the lack of support such as attendant care, and a scarcity of viable public transport options. Sadly, these systemic issues in Australia deny people with disabilities many opportunities to engage with art, which is rarely acknowledged as a basic human right. The need for creative output is demonstrated by the fact that across the world, and throughout history, all cultures have found ways to make art.
If people with disabilities participate in art, it is usually in the form of therapy, and therefore any art made by a person with a disability outside of this context is seen as inferior
In recent times however, people are less interested in seeing a variety of forms of art, so the industry has less money overall. It is important to recognise issues of support for people with disabilities within the arts sector – within Australia, the arts are not as highly funded as other industries, for example, the various sports industries.
So there are not enough opportunities and things need to be fixed, but why are people with disabilities being denied the ability to participate in the arts sector? The first reason is a phenomenon known as art therapy. Art therapy is still a fantastic means of increasing mental and/or physical health and well-being in a hospital or similar setting, but it has had some negative effects on people with disabilities who want a career as an artist. The issue is mainly symbolic. If people with disabilities participate in art, it is usually in the form of therapy, and therefore any art made by a person with a disability outside of this context is seen as inferior. It is also arguably true that given the current issues with access to mainstream society generally for people with disabilities, art therapy may be the only means of true participation for them. In my opinion this is only a small part of the problem.
Disability is not seen as sexy. The arts industry, as compared with any other, is based on image
But now to what I see as problems relating specifically to the arts industry. Disability is not seen as sexy. The arts industry, as compared with any other, is based on image. You have to have the right look in order to get jobs, and the right look is usually not a physical disability. Sure, there are the occasional performers who are not disabled and a bit funny looking who make it big, and they are my biggest idols, but there is yet to be an artist with a disability who has scaled the heights of Cate Blanchett, Nicole Kidman, or Keith Urban. I’m not saying that everyone can or wants to be in Hollywood or have millions of dollars in record sales (even if you don’t have a disability), but I have had numerous experiences of feeling that people have not wanted to work with me simply because I get around on four wheels instead of two legs.
Relating specifically to theatre, the next important barrier is the lack of representation of people with disabilities. It is relevant to the film industry as well, that there are very few stories written about disabled people, and when a production or a film is created that tells one of these stories, it very rarely represents the reality of what it is like to be a disabled person in the 21st century. These films and plays generally also use a non-disabled actor for their disabled role.
This was why I created Theatre on Wheels. I created my own student theatre group, in preference to working with existing ones, so that I could write works that neither had stories about people with disabilities who were tragic and desperate, or who were superheroes like David Helfgott or Christy Brown (both of whose lives became blockbuster films). None of the currently employed stock standard stories are accurate representations. Instead, many people with disabilities just want to have an ordinary life with a job, partner, education, children and a standard of living equivalent to those without a disability.
Let’s say you are not given your dream arts industry job. It may be because the person making the decision – a director or an owner of a live music venue – decides that you have the talent or skill that they are looking for, but immediately get scared by the prospect of your needs. For example, my disability means that I get fatigued easily. Like it or not, every day, no matter what I do to my sleeping patterns, I have to have nana naps. This is, as you can imagine, a problem if you are supposed to do intensive rehearsals all day every day. In the same way, it can be difficult for me to do long performances, or shorter ones but too many nights in a row.
There were obstacles to a career in the arts for me when I was at school. Some of my teachers told me I couldn’t do certain things, (and this next point applies to the education system in general), and I found it hard to find teachers who would give me one-on-one help. This was especially relevant to my singing practice because even to this day, I am always on the lookout for ways to control my breath (with limited lung capacity) whilst in performance.
I did somehow make it through high school with enough knowledge that I felt confident in progressing further with my career, but then I had some interesting experiences when entering university. At the time, my options for studying music or theatre-related courses were not great. One was too difficult to manage in terms of my attendant support and transport needs, given that it was too far away from my house. One met my needs but had only theoretical knowledge on offer (one of the courses at this institution with my preferred option of practical content was cut the year before I was due to start university). The last wouldn’t take me, but the reasons are complex.
For this course, I auditioned once straight out of high school and was not accepted. This is not unusual even for people without disabilities, but it is true that institutions like the one that I was auditioning that have a large practical focus, have very few or no currently enrolled students with disabilities. I want to suggest an explanation as to why I was rejected by relating a story which happened to a friend of mine who also uses a wheelchair. She applied for a course in set design and got through the first phase of selection. Upon discovering at the interview that she had a disability, the people examining her asked her how she could reach up high to install lights and other items in the theatre. I do not remember her response, but I do remember that she was not accepted. The question about reaching up high would most likely not have been asked of someone presenting without any obvious disabilities, and my friend would have probably been able to have a successful career in design after graduating, based on the fact that many professional designers for theatre are not required to install the concepts that they draw.
In my case, I applied for a different course at the same institution some years later, and was actively discouraged from applying, based on the assumption that the course and its requirements would be too difficult for me. I applied nonetheless, and would be the first person to admit that my application was not the greatest, so it came as no surprise that I was rejected. This time, however I knew it was largely because of the strength of my application, not due to my disability.
So what is to be done about all this? The first step towards greater participation of people with disabilities in the arts was Theatre on Wheels. It is not the only inclusive theatre company that exists in Australia, but it is the only group which performs at least some adaptations of pre-existing works, and it is certainly the most inclusive company for students with disabilities who wish to be involved in theatre. We aim to have a mixture of artists both with and without disabilities and do not require people to have had prior experience, as we feel that part of the role of the company is to give people with disabilities the skills to go on to other work or study.
I have recently been elected to two decision-making student bodies at the University of Melbourne, where I now study. I hope that this will give me an opportunity to advocate for real inclusion of people with disabilities in arts education and training. For now, I just have advice to other people with disabilities. A fellow artist who uses a wheelchair told me that the way into employment in the arts, especially if you have a disability, is to make your own opportunities. It means applying for jobs, not waiting for someone to give you one. It means creating your own work rather than going to countless unsuccessful auditions. It means honing your skills by whatever means possible. That way if you are rejected, you will know whether it is just that you were not what they were looking for, or whether they have genuinely discriminated against you.
Discrimination is not okay anywhere. Finally, if you do find someone to collaborate with, or someone that does give you a good opportunity to make art, do not under any circumstances let them go.
Jess Kapuscinski Evans is the artistic director of a student theatre group at Melbourne University called Theatre on Wheels (an inclusive theatre group performing contemporary and pre-existing works).