This is a blog written by Sarah-Victoria Bayley, nominee for the 2017 Positive Role Model Award.
I’m Sarah-Victoria Bayley, a 34 year old disabled single mother of three beautiful children. I am also a national beauty queen holding the title of Woman Crown and Glory Scotland 2017/18. Becoming a titleholder was always a dream of mine as it now gives me the platform to raise money for charity, help the community and raise awareness for those of us who are disabled, especially those of us with an “invisible” disability.
I have been unwell from a very young age and missed a lot of schooling. I obtained nicknames like “sicknote” and “Casper” (due to my pale complexion) which was very hurtful growing up. Completing my school work was hard but I managed to leave school with 7 standard grades at credit level and a B in higher English. I then went on to college and gained a National Diploma in Performing Arts. I was even the first in my class to finish which was a major achievement for me as I was so sick throughout it all. I also had a poem and short story I wrote published. I love to write, even though I have major cognitive issues. After college I went on to work as a dancer in Disneyland Paris which was truly amazing. Sadly just a year after going to work in Paris my health got way too bad for me to continue to dance.
I suffer from severe fibromyalgia which is a chronic illness that affects almost every function in your body. I have daily pain in my limbs, headaches, nausea, bowel issues, reproductive problems and severe fatigue. My cognitive issues mean that
I get confused with what I am trying to say, forget words and have general memory loss. I have pernicious anaemia B12 deficiency, factor v Leiden blood clotting disorder, migraines, a spastic colon, misaligned patella, wheat intolerance, depression, anxiety, borderline personality disorder and Raynaud’s phenomenon. On top of this I also have a circadian rhythm sleep disorder that means my natural sleep pattern is 4am-2pm which causes many issues with regards to raising my children and attending appointments. Despite this, with my families help, I continue to be a great mother and I am determined to be the best role model I can for them.
Sadly it wasn’t just at school that I noticed the terrible attitude towards myself and my disability. As I grew up and tried to go into the working world I was often deemed as being “lazy” or a “faker”. People didn’t believe in my being disabled as they didn’t see a wheelchair. I soon realised that I was just far too ill to work but the poor treatment stuck with me. It’s very difficult to find venues (although getting better) with disabled access yet when I did I was getting questioned as to why I was using the lift or sitting in the disabled seat as I was “clearly not disabled”. The same thing would happen when sitting on a disabled access seat on the train or parking in a disabled parking space. I noticed that when I’m my wheelchair on my really bad days nobody would say anything but on the days where I was attempting to walk there would be comments made. This is why I started to campaign for the inclusion of those with an invisible disability. I contacted places I frequent to explain my situation and make sure that people utilising the facilities are not questioned unless they are clearly running around. Even just as recent as a few weeks ago I faced more adversity, all because I posted a photograph on Facebook of me in my wheelchair. People were saying it was in poor taste as I don’t always need it and that it would make those who need a wheelchair continuously feel bad. This is the kind of issues those of us with chronic illnesses face everyday. I tried to educate the naysayers on my condition and explain why I need a chair sometimes. Despite the upset it was definitely worth posting it as I had many people message me to tell me I was there inspiration and even had the mother of a 14 year old girl with cerebral palsy say that I inspire her daughter and make her believe that one day she can also be a beauty queen. My children would often get made fun of in school because their mother is disabled so I felt going in and discussing things with them was the only way forward. The children’s school make allowances for me and due to my online (and offline) campaigning more people are now aware of fibromyalgia and other invisible disabilities. I am determined not to let my illness stop me from achieving.
I selected the Crown and Glory pageant system as they have an ethos of inclusion. Any female can apply, no matter your race, sexual orientation, upper age or disability. I worked hard in the lead up to it then sadly suffered a mini stroke and was hospitalised. I didn’t let this stop me though as I continued to campaign from my bedside and just 4 weeks later I competed and won the title. I feel that no matter what is happening, if you believe in yourself then others will and you can achieve your dreams.
Regardless of all of my achievements though I still find it difficult to get people to make the allowances needed for someone with a disability. There are things that I just cannot do, or that I can do but at a much slower rate than others. I often need to remind people that I am disabled (although I’ve already declared this) and that legally they need to make allowances for me and let me have the opportunity to fulfil my duties. I am constantly facing prejudicism, even in my personal life. I feel like I am constantly being judged. Am I a good enough mother? Am I able to fulfil my duties as a beauty queen? Will I be able to succeed in life? And this is a factor for almost every disabled person. I have the good luck of being able to have seen the world as a fully able person and a disabled person and I noticed a huge difference in how I am treated when I tell people about my disability. I am determined that my children will grow up treating everyone the same and knowing that we are all humans, no matter our ability, skin colour or any other differences. This is why I shall continue to post on social media and talk to the local press to raise awareness. Being nominated for a National Diversity Award in the Positive Role Model category is not only an honour but it is confirmation that my work is important for we would not need diversity awards if our world was already an inclusive one. I am so happy to be a nominee and I promise that I will use this platform to further campaign and get the word out there that we are all differently abled and should all be helping one another. I believe that with education comes inclusion.
I am currently undergoing more tests as another illness is suspected but I remain positive and will continue to try and help others.
I would like to send my good luck wishes to all of those shortlisted for their categories. I myself am now off to compete for the UK Crown and Glory title this weekend.
Sending love and hugs,
Woman Crown and Glory Scotland 2017
National Diversity Award nominee for Positive Role Model 2017