In Conversation with Actress & Disability Campaigner Sam Renke

Last year I started interviewing people connected to disability, whether that be through their job or being disabled themselves, as I wanted to give you a wider view and representation of disability. I am only one person, with just one experience so I hope that I can give you a wide range of opinions and experiences by posting these interviews. Last year I interviewed disabled actress Storme Toolis and Parallel London founder Andrew Douglass, and today I'm kicking off 2018 by talking to teacher turned disabled actress and disability campaigner, Sam Renke. You may recognise Sam from one of 3 Malteasers adverts that featured disabled people, Storme was also in one of them. Sam is not only an actress though, she is also a prominent disability campaigner and regular writes for Huffington Post and has a column in PosAbility Magazine, she's also a Parallel London ambassador. I recently talked to her about her disability, her acting career and the everyday difficulties she faces as a disabled person.

In Conversation with Sam Renke

Can you tell us a little bit about what Osteogenesis Imperfecta is and how it affects you?

Osteogenesis Imperfecta (OI), or more commonly known as Brittle Bones, is a genetic condition which affects around 15,000 people within the UK. I have type 3 OI and although it's a genetic condition, none of my relatives have it. Type 3 is a different mutation (I hate that word but it best describes type 3). Basically, OI means that I don't have type 2 collagen in my body. Collagen is found in your skin, hair, teeth and most significantly in your bones. I've had almost 200 fractures in my lifetime, even fractures in my Mum's womb. I already knew I was an overachiever. My fractures could occur up to 3 times a week as an infant and my Mum carried me on a pillow (again prima donna and overachiever, no wonder I became an actress).

My fractures have decreased as I've gotten older and my bones have strengthened from muscle increase and also puberty, thank god for those awkward teen hormones. My fractures are very sporadic, for example I've sneezed and cracked a rib, however I've been thrown from my wheelchair and come away with just a graze. I'm still very cautious and as I've gotten older I most certainly take better care of my wellbeing, however I don't wake up each morning and think 'oh today I may have a fracture'. I think if I had that attitude my body would become a prison and I love life far too much to let that take over.

I have a short stature and come just under 4ft tall, this is due to two things. When my bones were supposed to be growing they were in fact breaking and this stunted the growth. Secondly I had severe Scoliosis (curvature of the spine). It was so bad that I had life changing spinal surgery in 2006 to put metal rods in my back and stop my spine from squashing my heart and lungs. Both my legs have metal rods in too so you could call me bionic woman. I'm also prone to hearing loss, aneurysm's and have chronic fatigue. I am a full time wheelchair user, since my spinal operation due to complications I can no longer walk. I live independently in central London and I love my little flat. I absolutely love living on my own as it really makes me think outside of the box as there is no one to help me. I think this really helps me to be the creative person I am.

Find out more about OI on the Brittle Bone Society website.

How did you get into acting and what difficulties have you faced in the industry?

I've always loved acting, me and my older sister Stephanie have always been extroverts. Stephanie was always in school plays and I suppose emulated her. Drama was my favourite subject at school and it was a great form of escapism. It built my confidence which really helped me overcome any hangups I had growing up with a disability. I attended a number of drama groups after school however my dreams were squashed somewhat by my drama teacher who pulled me aside one day and told me that my chances of successfully becoming an actress when disabled were slim to none, like most other minorities. In a way this was true at the time as diversity in media almost 16 years ago was non-existent.

Her words really impacted me and although I still dreamed of becoming an actress or working in television, I actually went in a different direction and became a language teacher. I think teaching languages was the next best thing to being an actress and it was a performance of a class. I used to sing, dance, use puppets and sing language in my classes. In 2012 I took the brave, or somewhat silly decision, to quit my job as a teacher and move 200 miles south to London. It was at a housewarming party that I befriended a number of people in the industry and most importantly Max Barber, the director and producer of my first feature film. Max approached me at the party and asked me if I had ever done any acting and through our conversation we came up with a concept for a film and the rest is history. The film Little Devil won best film at the LA diversity film festival and I won best actress. To my knowledge I became the first disabled actress to win an award for their debut acting role.

I suppose the biggest challenge has been the industry seeing disabled people as 'good enough' actors and actually writing roles for us. Stereotypes are also a big issue. I refuse to play a role that victimises someone with a disability or has them as weak and vulnerable. I don't go on half as many auditions as I'd like or should be going to. Obstacles I've encountered on set such as accommodating my needs, whether that being bringing a PA with me or having a disabled toilet have been quickly resolved, it's all about communicating. This is why it baffles me why there still seems to be an issue with having disabled actors, we really aren't that problematic and will soon let you know if things aren't done accordingly.

X-ray of spine after spinal fusion with metal rods

What difficulties have you faced in everyday life as a disabled person?

The best piece of advice I've ever been given is this; the world doesn't owe you anything and once you start to think like this, no matter how harsh it sounds, your life becomes much clearer and much more manageable. Let's face it, having a disability is hard work at times and people aren't always compassionate, emphatic or helpful towards disabled people. People are selfish, that's the reality. Now, don't get me wrong, I'm all for campaigning to make the world a better place, I fight for injustice, but I don't spend time feeling annoyed about people not paying attention to my needs straight away. I am proactive and if I want my life to be better and fulfilled, I don't wait for others to make changes. I go out and change it myself.

So, in answer to your question, I face many challenges on a daily basis but it's up to me how much I let them affect me. I determine whether or not these difficulties bring me down or simply give me a challenge to conquer. I have my down days and I hate the world from time to time, however, I won't let societies ignorance impact on my wellbeing.

What changes do you think need to be made to make disabled people's lives more equal?

There are so many things but ultimately it comes down to people's attitudes towards disabilities. I am constantly underestimated in every aspect of my life. People think I can't have sex, have a baby, go to nightclub, have a job etc. This is why it's so vital to have authentic portrayals of disabled people on TV and within the media in general. Inclusion is the key.

Thank you so much to Sam for speaking to me! I think what she said about her dreams of acting really show how important it is that the people do not discourage others from going for their dreams, simply because of their gender, disability, race etc. Sam has become a talented actress, and campaigner for disability rights, and I hope to see her on our TV screens more!  

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