We noticed a lot of discussion on various forums about disabilities and health problems that various performers and models have, and often completely undetected or known of by those around them.
We let it be known that we were interested in speaking to anyone that would like to talk about their disabilities (or disaburlyties as we like to call them) and the response was amazing. The stories we read were so honest and uplifting – we have dedicated a large portion of this issue to these brave women and we hope you enjoy and take comfort from their stories…
This is Diva Hollywood’s story…
I started performing burlesque early in 2005 and loved it, but had never intended it to become my full time job, as I have been an artist for over 10 years producing prints digitally enhanced work for exhibition and performance.
My first Burlesque gig was for a film that was to be used in a live art show. I played the leads actor’s girlfriend, a circus performer who was sick of being poor so she runs away to New York and becomes a burlesque performer.
Later that year, I was actually in New York on an art residence with a digital dance company and I decided to make life imitate art and persuaded the promoter of the Slipper room to give me a slot. I was hooked.
I first got ill with MS in 2006, but I was not diagnosed properly until 2007. MS is an auto immune disease and it’s basically your immune system attacking your nervous system. The firsts sign that I had it was when my sight started to go in my right eye. I had something called Optic Neuritis – a swelling of the nerve behind the eye. Your system thinks there is a problem, attacks the area and leaves scars. This is what MS means – many scars. It’s the scars that cause the problem, because if you get too many in one area of your body then it all stops working properly. I have had about five major attacks, but I am lucky as my sight has come back. It’s really my balance that has been affected quite badly; my right leg is not so good and boy do I get tired.
I am now on medication that is really working at keeping it all at bay, but I have to be strict with myself. Not work too hard, exercise and eat well. I am not always very good at remembering to do all those things, but then who is? As my sight was affected I could not continue as a digital artist and felt that burlesque was the right way for me to go as an artist – as I still am able to perform, to create costumes, props and routines with humorous twists.
For me, burlesque was a way to stand up to my illness – to not be afraid of what was going on. In the early stages, I was not sure if the illness was going to kill me quite quickly, as some people only live for ten years with it. This made me realise that life is short and you have to get out there and live, enjoy and explore.
Burlesque and MS have empowered me as a woman and also as a performer. I have been welcomed into both the burlesque world and also the disabled community.
This year I have performed with some of my heroes of burlesque, such as Julie Atlas and Fancy Chance to name but a few. I have also been commissioned to make two new pieces of work by NWDAF. I performed these at Dadafest; one of the biggest disability arts festivals in Europe. It was amazing as there were artists and performers from all over the world.
I performed as a side-show mermaid: this was a special commissioned art installation where the public could come and have tea with me and I read them fairy stories or just chatted about being a mermaid. I also performed a specially commissioned burlesque act at Dadalesque, which is one of only a few disabled cabarets in the UK; there are others,but this one was very special for many reasons, as I know a lot of performers who live with many different disabilities. We had a phenomenal chat on the MOB forum a few years ago where many of the girls ‘came out’ so to speak, and this is what sparked Millie Dollar to create Dadalesque. It was so wonderful, as it brought us together and made us realise that we are not alone.
I performed my commissioned piece called ‘The Black Swan’ in which I try and convey the dark spector in my life that is MS. How it effects me and others, the fear that it can evoke, how I have come to terms with it. Also how funny and ridiculous it can be and the inner beauty and strength that burlesque has given me since I got ill. It has been a very hard road making this new act and I have had to over come a huge amount to get it on the stage. I would just like to take the time here to thank Amelie Soleil, who showed me how to stop myself fainting after the show was over, and gave me the best hug when I burst into tears. I am so pleased with the response I received; it was fantastic both at Dadafest and non-disabled audiences.
Maybe this sounds daft, but I had to make this act, as for me its my final step of taking control of my illness rather than it having all the control.
As far as suffering unfair treatment or discrimination within the industry as a result, I guess I will never know. I have always been very open about my illness as it has effected my sight, legs, arms and balance, so I had to be honest with promoters so they did not think I was just drunk on the job. It may have put a few people off from hiring me, but if it has I will never know.
For me on the whole burlesque has been a very positive experience and promoters look after me make sure I do not get too hot, or have to carry stuff too far, or when I am feeling ill, not have to wait around to perform.
As I had started to perform before I got ill, I thought it was going to be one of the things I was going to have to give up, but I am so glad that I have not. Instead of hiding myself away to cry ‘oh I have a disability’ and getting depressed, I have gone out there and used what energy I do have to make new acts and shake my thing.
I get amazing emails from audience members and other performers making me feel very humble about the fact that I have been so open about my illness and that I am going out there doing what I love gives them strength and confidence to fight what is going on in their lives. I am very lucky to have a supportive partner, Steve, and amazing disabled friends Max Zadow, Millie Dollar, Amelie Soleil and Mat Fraser who care, listen and encourage me to shake my tail feathers.