Sharon’s Story- OICAN

“Sharon, you can’t…” Actually, I can!

Born with Brittle Bone Disease in the 70’s I grew up hearing “Sharon you can’t” too many times to mention.

Sharon you can’t run. Sharon you can’t join in.  Sharon you can’t climb that. Sharon you can’t..

It was always sad to hear, but I knew everyone throughout my childhood meant well and wanted to protect me from another fracture.  By the age of 17 I had had roughly 35 fractures and I knew all too well the pain and time required to heal and I’m sure I had exhausted my close family and friends who had helped me through all the visits to hospital and operations to fix broken bones, especially my poor parents and grandparents.

However, I seemed to gain from this experience and instead of letting it hold me back, it seemed to give me an energy from somewhere to find out what I could do in life and to ensure I did my best to achieve great things.  Changing the voices from Sharon you can’t – to Sharon you can!!!

Although I missed a lot of school growing up due to time off for fractures, I managed to graduate from university with a 2:1 honours degree and become an accountant.  I’m currently working in a global oil and gas company in Glasgow and I just love my job.

Although fearful wondering if my body would be able to bear a child, I gave birth to a beautiful son called Ryan who avoided the 50% chance of me passing on OI to him.  He is 16, doing great at school, enjoys playing football and is heading to being 6 foot tall.

I also help a lot in my local community of Dumbarton including volunteering at a local youth group.  I’m treasurer of a local youth football club,  and I am also on the Dumbarton Town Centre Forum promoting shop local campaigns and encouraging local business.

I also enjoy fundraising and obviously as I’m not one to throw myself out of aeroplanes or down the side of buildings, I found a challenge that many able-bodied people wouldn’t be able to do – I’m completing a sponsored fire walk in May.  Wish me luck!

Other than the Blue Sclera, I do not have any visible symptoms of OI. It is only obvious when I am healing from fractures. (I now have a tally of approximately 50 fractures, and this was especially apparent in 2012 when I managed to fracture 4 limbs at once during a simple fall onto the pavement.)  I therefore most of the time think of my condition as a hidden disability. I decided to try to raise awareness of OI and other hidden disabilities within my company and I’ve recently joined their Diversity & Inclusion Committee where we are putting together an awareness campaign throughout our UK offices to recognise, celebrate and understand hidden disabilities in the workplace.  I’ll certainly be promoting Wishbone Day in May to raise awareness of OI and how from weakness can come strength and employing disabled people can add so much to a company.

I do believe that with any challenges in life, you need to recognise your limits, but understand that there are so many opportunities out there and all you have to do is search them out and go for it!

#OICAN

Idols

So here is a question for all, especially for those without a disability; Who were your idols when you were growing up? Who did you aspire to be? Don’t be shy just a fun question which may take you back to those crazy hair styles that may have gone wrong and funky clothes you copied!

Who were those famous people that really influenced your style, creativity or career to this day? Now what is it about that person that made you as a kid aspire to be like them? I bet at times it’s because you saw a part of yourself in them.

Now imagine how different your life may have been if that person didn’t exist.  There was nobody to copy your style from, no one to inspire you, follow in their career path. no one to crush on. Nobody similar to you in any way to look up to.

Media

That’s what so many young disabled children and adults go through every day, and I was one of them.

Growing up I didn’t see anybody like me on TV, in magazines or just in the public eye. There wasn’t really anybody that I could truly say “wow they’re like me, maybe I could do that too.” I didn’t realise how important this truly was until I became a mentor for young children and disabled adults. Having casual conversations with them really opened my eyes. It was clear that young disabled people either didn’t have any one to aspire to, or they dreamed they could be someone completely different, as their idols looked so vastly different to them. The worst part of it is speaking to some of the young children and hearing them say they didn’t know what to do in the future, they didn’t know who they wanted to be and never saw anybody like them on TV.

To many people this might not sound like a big deal but when you really think about it, seeing some sort of representation can make people feel inspired and really push them to do something they’ve always wanted to do. Whether its to pursue a career or even just spark a new hobby, style or trend.

Disabled Dancers

It took speaking to the youngsters for me to realise that not having a representation of myself growing up really did impact my life. Maybe if I saw someone like myself acting, dancing or modelling I probably would’ve been inspired to do this from a very young age. Imagine how different the conversations would have been for me being a mentor with young disabled children and adults if there was idols I could show them, or idols who inspired me. Just imagine how different the world could’ve truly been if this happened decades ago.

Representation

We can all see that this is changing! There are so many amazing individuals, organisations and companies really pushing and are at the fourth front of representation of people with disabilities.  Many of us do what we do to vastly tilt the scales of representation across the media so that seeing somebody with a disability or difference becomes “the norm”. This gives the next generation the option to aspire to be someone that is like them in some way shape or form. This could mean they don’t feel alone. It is very easy to feel this way when you don’t see a representation of yourself regularly. There are many people, especially with disabilities, that have been fighting this fight for years and I have the upmost respect for them because without them we wouldn’t have the blueprint to even think of a society with a wide range of representation.

It takes a lot to do something that many haven’t done before. The importance of representation in the media is important and, let’s face it, is the quickest educational source that we all use without even realising it. We all learn so much just by watching a film, seeing an advert,  and reading a magazine.

This blog is for those who didn’t even realise they have minimal/ no representation in the media, for those that know there is no representations to them, and for those changing how representation is shown of people with disabilities and differences in the media.

We can all benefit from seeing some kind of representation of ourselves regularly whether it’s hair, size, shape, ethnicity, culture, difference, disability and more.

It’s about time the media reflected a little bit more of reality.

Growing Up with a Disability

Growing up, I was immersed in world where I was surrounded by disability, by virtue of living with Osteogenesis Imperfecta or by being around other disabled people in hospital or at school. Yet, I never described myself as a disabled person despite everyone around me labelling me as that, attending a special needs primary school and using a wheelchair for the first 16 years of my life. It wasn’t a part of my identity I felt comfortable with which is so ironic because having Osteogenesis Imperfecta informs every decision I make and how I experience the world around me.

Let’s face it, disability wasn’t a term that was particularly positive, attractive or progressive 30 years ago. Whilst we have seen some change around the perception of disability in society through things such as the Paralympics, change has been painstakingly slow and there is still much more that needs to progress.

Disability Improvements

Fast forward to being a thirty something, well-travelled woman: and I’m happy to share that I have fully embraced calling myself a disabled person. But why?

Well there are a few reasons:

1. Whilst change has been slow, disability is becoming more visible in society and these changes are making it easier to be a disabled person now than ever before:

• The government has several campaigns and initiatives to help disabled people get into and stay in work. The Disability Confident Scheme and Access to Work Scheme are two you should definitely look up if you are looking for work.
• Businesses understand the prevalence of disability are transforming experiences for their disabled employees and customers. Some companies ring-fence a number of jobs and schemes exclusively for disabled people.
• Retailers and service providers are beginning to understand the power of the ‘purple pound’, that is the collective spending power of disabled people. We are now seeing adaptive clothing ranges in high street stores.

2. Better onscreen representation than ever before and dedicated programmes around disability. Don’t get me wrong, onscreen representation of disabled people is still massively low, but prior to this it’s been non-existent. As an Asian Disabled woman, I have still never felt represented in society, an absence which has motivated me to be the change that I want to see.

3. We’re better connected to support each other and share knowledge with the ease of using social media. This makes me think about how tenacious Margaret Grant was when she set up the Brittle Bone Society in a time where it was much more difficult to connect with people and she created this amazing society!

4. More people are adopting the Social Model definition of disability.

• The social model says that people are disabled by barriers in society, not by their impairment or difference. Barriers can be physical, like buildings not having accessible toilets. Or they can be caused by people’s attitudes to difference, like assuming disabled people can’t do certain things. Removing these barriers creates equality and offers disabled people more independence, choice and control.
• The social model of disability was developed by disabled people in the 1970’s and 1980’s. Not everyone uses the social model and that’s ok. It came as a reaction to the medical model of disability which had been widely agreed with at the time.
• The medical model says disability is caused by the health condition a person has and the nature of this condition will determine what they can and can’t do. So the medical model looks at ‘what needs to be fixed’ with the person, not at his or her strengths or needs. I believe this creates low expectations and leads to people losing independence, choice and control in their lives.

5.The final reason is about the day to day mundane things in life such as calling the disabled booking line to book concert tickets or if I need to park my car, sometimes I need to use a disabled bay and my blue badge.
It occurred to me that even as an adult everything around me was has been labeling me as disabled just by needing through using certain services for me to go about my daily life, for example, booking tickets to see Drake in concert.

Identity

My condition is and has always been a part of me, just like I’m a woman, I’m British, my ethnicity is Indian, I’m a sister and I’m a daughter. I can’t separate from it and live a different life as if it doesn’t exist because every single moment of my life has been lived through this lens. Once I was at peace with this, I jumped in feet first into owning this (not so) new identity.

Since adopting this view and embracing my identity by calling myself a disabled person, I’ve become more empowered as an individual and now belong to an enormous community. It has motivated me to become a disability rights advocate and fight for everyday equality along with defining my career choices.
I would love to hear about your experiences – get in touch @shanidhanda

Would you ever think that somebody with a body like yours could end up on the cover of magazines, be in a national advert or even have an image of their nude body published in a book?

Believe it or not it’s happened, and it’s happened to me.

Never in my wildest dreams would I ever think somebody like me would be asked to be a model, but when you really think about it why not? It’s taken me the last three years to realise our bodies may be very different to others but they are still beautiful. Then again, how would we know that when we hardly see any representation of ourselves in the media. How are our children supposed to know that their bodies are just as beautiful as anybody else’s when growing up they do not see any sort of representation of themselves in the magazines, or when their peers are admiring celebrities like gods, and the latest fashion trends they follow. They aspire to be just like them.

It was never my intention a few years back to do any of this. I was just a woman working in a school and mentoring young disabled people to live independently. I was lucky enough to have been put forward and have this opportunity, this platform to push for change and representation of beauty when it comes to having a physical and very visible disability.

How it all Started

Believe it or not it all started from a 3AM email from my dance teacher while at the OIF Conference in Florida. I opened the email and had to triple check to make sure that my dance teacher sent it to the right person and that he really meant to put me forward to be a model with a new modelling agency in the UK that only represents people with disabilities and differences.

Within a few months I was asked to do a photo shoot in Manchester, it felt quite weird doing so when I hadn’t actually met anybody from the agency and hadn’t been signed at the time so I took it on as a test to see if they really wanted me or not.

Your Body is Just as Beautiful as Anybody Else’s

Now I don’t know about you but the first thing that went through my mind when I heard photo shoot was Glitz & Glam and really pretty dresses and outfits. I’m not saying that didn’t happen on the day of the shoot, but I wasn’t too confident that my very first photo shoot was me bearing my beach bod in a room full of strangers! Yes, the first day shooting was with me in a swimsuit. I have never really felt comfortable in a swimsuit, even on the beach, so you can imagine how I must have felt that day. That was the first day I was surrounded by around twenty other disabled models of all abilities and body types that my body could be seen to be as beautiful as anybody else’s. Ever since that amazing and eye-opening day I have pushed myself to remember to make sure that everything I do in modelling puts that very statement first, “your body is just as beautiful as anybody else’s” and don’t let anybody tell you any different!

Plus, unique is the new chic, right?

Penny Clapcott has type III Osteogenesis Imperfecta and despite numerous fractures over the years she managed to achieve her dream of becoming an aerial performer. In 2012 Penny had the opportunity to perform in the Paralympic Opening Ceremony in front of millions of viewers.

“Having grown up with the BBS I was able to look up to older OI’ers and realise there are no barriers to living life in the way you want to, it is your choice, all down to the restrictions you put upon yourself. I didn’t grow up wondering whether I would be able to drive, get a job or live independently because I saw people like me doing it, giving me a lot of confidence growing up. I just wanted to find my own way to do things, they might not be conventional but they get the job done! So thank you BBS”

You can hear my story in the film, including my experience of  taking part in the paralymics as a trapeze artist.