Here, in her own words, actress Samantha Renke talks about what she's learned in life.
The first words my parents heard when I was born were, ‘We’re sorry, there’s something wrong with your child.’ If the doctors had said, ‘Your child has osteogenesis imperfecta, but there’s treatment and many people live with it,’ that would have been more accurate.
As a child I knew I was ‘different’. I have an older sibling who is non-disabled, so I knew I couldn’t walk. I can’t walk because my bones can’t handle the strain. I had multiple fractures from birth and have broken over 200 bones to this day.
But despite my parents being told the prognosis wasn’t good and to just pray for me, they did a wonderful job and always treated me the same as my sister, encouraging me to do whatever I wanted in life.
I actually think some of the skills I’ve learned from being a disabled woman are invaluable and have made me who I am today.
I quite liked my differences when I was very young, because people used to come up to me and say, ‘Oh bless her’, and, ‘What a shame’. I now view them as condescending, but as a youngster that came with free toys and sweets and attention.
I loved it! I’ve always been an extrovert. Obviously as I got older I realised it wasn’t always positive attention, especially after my father passed away suddenly in 1996.
I was nine and because we had to move, I had to change schools, which also meant being separated from my sister, as her new school hadn’t been adapted for people with impairments. I didn’t know anyone at school and for the first time I felt like a real outsider.
I struggled when kids referred to me as ‘the one in the wheelchair’, because prior to that I was just Samantha. I always had this innate sense of being fabulous, to be honest!
'And yes I was bullied, but so were other kids. Plus losing a parent affected me and that isn’t related at all to my disability.
Everyone thinks disabled people just wish to be cured. But I always enjoyed being me. I liked being different and I only ever got upset when other people didn’t accept me and I didn’t understand why.
That view changed briefly when the teen angst kicked in, because so many people had told me disability was a bad word.
I went through a phase of not wanting anything to do with disabled people… I even hated it when I had to go to hospital and sit in a room with other people who had my condition.
People had told me disability was ugly, disability can’t get a boyfriend, that you have to sit all the ‘normal’ things out. There’s a lot of peer pressure on teenage boys anyway, and I think a lot of them didn’t want to have a girlfriend in a wheelchair.
I couldn’t bear to look at my own body, but what I realise now is, like any teenager, I only became self-conscious about what people commented on – like girls who didn’t want to wear glasses, or wished their nose was smaller.
I’ve got scars on my legs from various operations from bone breaking (including a huge one to realign my spine) and I’ve never been bothered about them. They’re visible, but I think it’s because people have never made a comment about them.
The turning point for me was a love of fashion. I remember being out with my mum and sister and everyone was staring at me. They stare because they’re curious about wheelchair use, but it’s ignorant.
It became too overbearing this day and I was crying. My sister, bless her, said, ‘Maybe people stare at you because you dress really well and you’ve got nice make-up.’ And that was a change in perspective that’s really helped me.
Being eccentric, I was mad about acting. I did a professional acting club after school, and one week a scout was coming from London to look for talent for a West End stage show of Oliver. My teacher took me to one side and said people like me won’t get a look in.
Even though that sounds harsh, she was right. That was 17 years ago, but even now we still only see 3.7% of on-screen talent who are disabled.
That devastated me at the time and I went on to become a teacher until a chance meeting at a house party with a director landed me a role in a little indie film. From that, I got an agent, then landed the Maltesers ad.
It sees me telling the story of how I ran off with the best man at a wedding and not only was it shown abroad, it’s one of YouTube’s most searched adverts. I think it was powerful and it made me more approachable.
People started coming up to me for selfies and a chat, which was great because people can be awkward around disability. That was so refreshing and liberating.
It hasn’t made me a big celebrity by any means, but it does mean I don’t use dating apps like Tinder. Some people recognise me and just want to have a laugh. But I find internet dating intimidating anyway. Do I disclose my disability or not? Because a lot of people have this unconscious bias.
And there is definitely a weird fascination with disability and sex – if I were to put a picture of my wheelchair, people would assume I can’t have sex or won’t make good dating material.
I know people are curious, but my advice would be, if you would never ask a stranger a certain question why would you ask someone with a disability that question?
Now I live in a great flat in London that’s adapted and I can do whatever I like. I’m only disabled because my environment disables me, but in my apartment I’m self-sufficient. It’s as soon as I leave that home I become disabled and then my life is problematic.
As well as the acting (and a regular slot as a panellist on Jeremy Vine On 5), I do a lot of charity work. I talk in parliament, and as well as lobbying for more accessible housing (and my beloved clothes shops!), one of my main campaigns is to change the fact many disabled women can’t access smear tests, which is criminal.
They rarely have hoists, so I have to take a friend with me. It just goes to show again that we’re infantilised – people assume we’re not having sex and therefore don’t need a smear.
A lot of disabled women are going without. Even mammograms. If you can’t stand how do you have one?
I hope to change the attitude that if disability doesn’t affect you or someone you know, why should you invest in caring about it. Anyone can become disabled at any moment.
I see what I can bring to the table, and although that may be different, I’m working with big organisations because of this skill set.
Disabled people are just humans and you’ll find you’ll learn a lot from us, so don’t feel uncomfortable about approaching people like me.
You might end up getting a friend, partner or business associate. Don’t see it as a weakness or disadvantage. I’m not the girl in the wheelchair. I’m Samantha. And proud of it.
– Listen to Samantha’s interview on new podcast and YouTube Talk Show series Unleashed: The Game Changers