Actress, journalist, writer, disability rights advocate, diversity consultant, and keynote speaker. she is:
Samantha Renke – winner of The Susan Mullen Award for Best Actress during the Los Angeles Diversity Film Festival in 2014; writer for The Huffington Post, PosAbility magazine, and Metro on a variety of topics such as living with disability, socio-cultural criticisms, patronizing attitudes, body image, bullying, LGBTQ+ issues and ableism. She is a speaker for the National Education Union, Viacom, Houses of Parliament, British Red Cross, Santander, Reed Fashion, UNICEF, ASOS, COS Fashion, Creative Equals and Valuable 500.
Here’s our conversation with Samantha:
Samantha Renke is a well-known disability rights activist, actress and presenter from England. She was born in Lancashire, England and has a genetic condition called Osteogenesis Imperfecta, also known as Brittle Bone Disease, which means her bones are very fragile and prone to breakage. Samantha, always a fighter, has achieved a lot. She completed her B.A. in German, French, European Studies and Sociology at Lancaster University, and her Post Graduate Certificate in Education at Saint Martins, now known as University of Cumbria. After graduation, she worked as a teacher mostly with children with diverse needs, but she quit that job and left her hometown of Lancashire to make the brave move to London. At the time she did not have a job although she was a trustee for the Brittle Bone Society and started to volunteer at Action for Children, a very well-known children’s charity in the U.K. A chance meeting at a housewarming party brought her together with Max Barber, her now business partner, who is a producer and director, and they produced the indie film Little Devil in which she starred. Alongside filming, Samantha was also very much involved with the pan disability charity Scope, in which she received informal media training which then turned into her now career as a broadcaster and disability consultant.
Samantha has been a TV presenter for the BBC and Channel 4, covering topics such as disability rights and accessibility for people who are disabled. With various organization, such as Scope, she has been involved in many campaigns and initiatives to raise awareness about the challenges that disabled people face in society. In addition to her TV, film and advocacy work, which includes delivering DE&I training for ASOS, Samantha is also fashionista – she partnered with handbag company Mia Tui to develop a fully inclusive handbag. At every opportunity, Samantha uses her platform to promote body positivity and diversity.
Her latest accomplishment? She is the author of a book called, You Are the Best Thing Since Sliced Bread, in which she shares no-holds barred stories of her life.
Tell us, who is the real Samantha?
As we would say in the U.K., I am very much a typical northern lass who is very outspoken, who is quite cheeky, and who is not afraid to work hard. I was born in Germany. My mom was a German nurse, and my dad was in the British Army. They had a beautiful relationship, overcame their language barrier, and, in my opinion, were both very sexy people.
Neither of them was disabled, and neither is my sister Stephanie, who is nearly 5 years older than me. So, when I came into the world, diagnosed with a condition called Osteogenesis Imperfecta, it scared everyone. I talked in detail about my birth in my first memoir, You are the Best Thing Since Sliced Bread. A lot of that is looking at my birth and having those conversations with family.
My mom, in particular, said something quite heartbreaking there. She said, “You know, your birth was more like a bereavement than a celebration because everybody was partly negative about your arrival. And it’s really hard because not only did you come into this world with a label, but you also came with all the unconscious bias that is attached to that label.” And that is something my parents were guilty of. They were both two young 20-somethings, with no experience of how to deal with disability, then all of a sudden, they had this child who everyone thought was going to be a failure and wouldn’t survive past infancy. It was odd listening to the reaction to my birth from my family.
I had always felt that I was a happy, chatty and confident child growing up. If you ask me where I get my strength, my drive, my aspirations and so on, I think they would ultimately be from that innate sense of self-worth. I liked my uniqueness. I never really saw it as a hindrance in my formative years. I enjoyed being the center of attention. Being in a wheelchair, I didn’t feel pitiful when I was approached by people. I felt special wherever I went as I was showered with toys, sweets and gifts. In my book, I wanted to tap into that sense of self-worth I had back then because I feel that I’ve lost much of that along the way. As you grow up, you start to become aware that you are different because of your disability, and the challenges you face became tougher as people single you out.
When did your self-awareness change and why?
There were two major instances that stuck out in my memory. One was in primary school. I had a powered wheelchair and an electric wheelchair that I kept at school. Over the summer holidays, though, the school was broken into and vandals spray-painted, urinated and defecated on my wheelchair. That was the first time that I recognized the cruelty of humans and I felt quite vulnerable.
The second time, in primary school, I wasn’t allowed to go outside during breaks unless I was accompanied by a teacher. While I waited, my best friend would always wait with me and we would play with our dolls. But then they separated us because they were worried that she wasn’t going to make other friends, or that we were spending too much time together.
It was difficult to comprehend those moments. There was a term for it, but I guess it’s that whole ideology surrounding disability that I was the problem, and I was the one that had to make sacrifices for my disability. If they were concerned about my friend not having other friends, where was the concern for me? They could have facilitated my friend to accompany me so we could all play together instead of me being left on my own.
What led you to a life of activism?
Our family had decided to immigrate to America and go on a van life across the country, where I’d be home schooled. The plan was, after America to move to New Zealand where we had family. But my world came crashing down when my father died of a brain hemorrhage at the age of 38. Due to my father’s death our family’s plans got turned upside down and we stayed in the U.K., which meant that I had to find an appropriate secondary school that would accommodate my needs. At the time, many schools in the local district did not have wheelchair access, therefore I could not transition with my classmates into secondary school and so I started at a school where I knew no one. This is where I became the girl in the wheelchair rather than the bubbly, cheeky, blonde-haired girl as I was known in my previous school. And I was bullied.
The college years changed me, however. I found my tribe there. I was in my early 20s and was doing a post-grad degree in teaching. I got to wear my own clothes, own makeup and regained a lot of my confidence as I felt part of a more liberal community of people who are thinkers and more accepting of others in the world.
One day, I was on a train going to the hospital to see my specialist. I met another girl in a wheelchair with a bone condition similar to mine. I thought that she was quite sexy. She had fishnet tights, bright red lips and piercings, with a can of beer in one hand, and I just thought she was so cool. We started chatting and we recognized that we were both very similar. She told me that she was a trustee for the Brittle Bone Society and that they were looking for a new trustee, and she thought that I would be the best person for the job. After that conversation, I became a trustee for six years. During that time, I met a lot of people with disabilities and through them, I understood the importance of the community, the importance of having disabled friends and the importance of having a sense of pride in my identity.
As a trustee, I was privy to free media training, which coached me to use my voice to communicate. An extremely beneficial skill. Although I enjoyed teaching, my heart lay in charity work. After two years of being a schoolteacher in Lancashire, I decided to leave and move over 200 miles away to London. I shared a flat with two other wheelchair users as there weren’t many places that were accessible to disabled people like me. However, even though it was a challenge living in an open-planned living room for 6 months, I was committed to helping others, which in turn meant being able to help myself.
Tell us about moving to London?
I came full circle because all the friends that I had were members of the LGBTQ+ community. I would spend a lot of time clubbing and partying with my gay friends, and because of that, we saw similarities in each other as we felt prejudiced and marginalized. I wasn’t unique anymore.
I worked at a nightclub. I wore alluring outfits which boosted my confidence, especially in the way I looked. All of a sudden, people took an interest in this petite girl in a wheelchair with crooked arms, nipple hairs and scars, but who was totally in control of her life and lived it to the full.
Can you tell us about meeting people for the very first time?
My natural character in any new environment or situation is to be very approachable, and I possess great communication skills. Even though it can be quite tedious because, at the back of my mind, there is still quite a lot of ignorance in society about disabled people and uncomfortable feelings surrounding the issue of disability. I can empathize with disabled people who are innately shy or introverted and can understand that new situations and meeting new people can be very difficult for them.
Is this your natural disposition?
I think most of it is natural. If I’m quiet and demure, then there is something wrong with me. I’m either very unwell or battling with anxiety. Sometimes when my anxiety is very, very high, it can impact the way I interact. I may be chatting, but just because I’m smiling or giggling, doesn’t mean that I don’t feel sadness or pain.
I’m very aware, however, that non-disabled people, on the whole, don’t know how to cope with sick people. They don’t know how to cope with pain, anger or frustration. So, I think a lot of disabled people should not hide from their true selves. This is where information is important. We would prefer an inspirational story over reality.
Share a bit about your teaching experience.
When I was in primary school, one of the teachers asked me what I would like to be when I got older.
I remember confidently saying, “Well, I have to go to high school, and college, then university. And if I am at university, I’ll probably either become an actress or a teacher.” Ironically, that’s exactly what I did. I studied French, German and European studies, and excelled at Sociology. And that’s probably why I excel at disability studies and the consultancy work that I do now. But everyone kept asking, “Why aren’t you teaching?” Halfway through my degree, I had to have a spinal operation. It was a very significant operation to correct my scoliosis and the operation did not go very well. I suffered from spinal cord damage. I graduated but was quite weak. I had quite a co-dependent relationship with my mother. I wasn’t very independent, even in my university years. I was very reliant on my mom. In my head, I thought my mom had given up her life to be my caregiver, so if I start to live my life, what would become of hers? That all led to my move to London.
But why did I get into teaching? It was because I wanted another year within the safety of education space, and in the UK, they were desperate for language teachers. I also love kids. I’ve always had that really good connection with children. I was the only disabled teacher in that space.
And how was that for you?
I hated every minute of it. The establishment wasn’t very accommodating of my needs. They saw me as more of a hindrance rather than an asset. A lot of the teachers were also not very respectful and the environment was one of ableism. Instead of calling me Miss Renke, for example, they’d just go with Samantha in front of the students. It was not conscious malice but everything seemed like a challenge and I just wasn’t very happy at all, so I was a teacher for only two years. Microaggressions – it’s like death by a million paper cuts and this was exactly how I felt at the time.
From teacher to actress and broadcaster. Tell us about that transition?
Coming from a small town, I faced a lot of physical barriers in London, going to interviews and a whole host of other barriers that I had never experienced before. For example, I’d turn up to interviews and the lift would be broken. I also went to a few interviews where all they said was that they didn’t have a disabled toilet and that was the end of the interview. I struggled with that. I was applying for basic jobs, and office positions at entry levels and my situation was becoming quite desperate as I was 26 and thought I might have to give up my London dream. Then I went to a house party and I was the only girl there. The other people were all gay men and most of them worked in television. There was an editor and just crazy, amazingly creative people. That’s where I met my now business partner, Max Barber, and together we have a production company called Born This Way Media. He took a shine to me and wanted to know if I had done any acting, and I told him that I did. I did do a lot of acting as a child, not professionally – I didn’t receive much encouragement from my teachers. So, when I was 15, I gave up my hopes of acting. Max gave me the opportunity to do an indie film called Little Devil, which I won best actress for at the L.A. Film Diversity Festival. I got an agent and, as they say, the rest is history. Max and I make sure that we give opportunities to those who feel that they can’t get their foot in the door to be in front of or behind the camera.
What happened after the film ?
That was in 2013. It was strange back then to have a physically disabled female in a lead role. At the time, I thought that this was going to be my big breakthrough, and I think that rolled things on. Inclusion, equality and diversity weren’t really on the agenda back then. It was just seeping through. Max went to every broadcaster to pitch the concept and idea, and to show that disabled talent deserves to be on TV. I’m grateful for that, for me personally as an actress.
We know we should be doing more, but we’re just not going to make that commitment. I think for me, I had two options: I could keep going or look at different avenues. At the time, I needed to pay for care and I needed to pay my bills. I started writing, broadcasting and disability awareness training. I used my various teaching hats and started to say yes to a lot of different projects to keep my motivation going. I love everything that I do. If I had stayed on, I’d probably be acting full-time. But we have to look at the realism of being a disabled actor – the extra costs and the rejections of being a disabled actress are hard. When you have a disability, the pot of opportunities is even smaller. And I was sick of even going to testing when they hadn’t thought about access needs. I remember once I had to go audition for a commercial. They wanted wheelchair users, but they couldn’t be bothered to find a wheelchair-accessible studio. All the actors who were in wheelchairs had to do their auditions in a café on the ground floor.
What inspired you to write your memoir?
I always wanted to write a book about my life. There were a lot of things that have shaped me that I can’t talk about. But the message in the book is just to believe in yourself, returning to that innate sense of self-love I talked about earlier. And even when things are difficult, no matter who you are, just remind yourself that you are the best thing since sliced bread. The book is available on Amazon.
What are your thoughts on inclusivity and the power of the media?
Whenever I do a training session, I always say, “Leave your ego at the door!” What I mean by that is just because you think that you’re a good, compassionate individual does not mean that you aren’t indoctrinated by the unconscious bias which is often perpetuated by the media. We’re all guilty of having preconceived stereotypical notions of other people, but we all can unlearn and relearn. If someone like me or anyone challenges your use of language or your ideologies, don’t let your ego get in the way of making the world a better place.
How do you feel about yourself now as an adult as compared to when you were a teenager?
I think I definitely got that confidence back. I think that comes regardless of who you are when you get a little bit older. You don’t care as much about what people think or what people say. I don’t go out with makeup on all the time, and that’s quite liberating. One of my favorite things to do is taking myself out to a cafe or restaurant and simply sitting, people-watching on my own. It’s funny, because most people are intimidated by going out on their own and onlookers either view this as I’m incredibly cool or incredibly sad – either way I don’t care because it’s something that I enjoy.
But I am a human being and I still have my down days. I struggle with dating. I have a lot of traumas and I feel my lowest when it comes to the world of dating. That is something that I’m working on with a therapist at the moment. This is something that I wrote about in the book too. Whenever I have these moments, I try to change my perception of the situation. I always use little analogies. When I was a teenager, around 17, I went through depression. There was an instance at Ikea with my mum and sister and I remember everyone just staring at me. At that time, it was devastating. I came out of Ikea, burst into tears and felt so ugly and disheartened. Then my sister, who is quite a sporty character, sat next to me and said, “Have you ever thought that maybe they stare at you because your outfit is impeccable, your makeup is gorgeous and what you are wearing is so great? Maybe they want to know where you got that hat?”
I’ve carried those words of wisdom with me ever since. In any given situation, I don’t always jump to negative conclusions. I did a podcast recently with a host who was herself a disabled woman, and I shared the same story. She went, “Oh my gosh, really funny! I was on a train recently, and someone was staring at me, and when I got off, this woman said, “I’m sorry. Can I ask you where you got your trainers from?” So that’s what it is about! There are always going to be nasty, rude and arrogant people out there but we have to remind ourselves not to think negatively at first.
Can you tell us more about dating?
All the issues I have experienced from dating come from my disability and I did not have positive role models when it came to relationships. I’ve always had a very negative view of men, so that is something that I’m working on. Regarding my disability, all the non-disabled boyfriends I had when I was younger in high school, they would ask me to keep it a secret from my peers so that they would not have this stigma associated with having a disabled girlfriend.
I’m incredibly independent but I would love to have someone to be part of my life as a companion, although I don’t feel I need someone to complete me. And that can be problematic on the dating scene because you’re going into a world that is very heavily based on steps, intimacy and sex. I’ve been targeted by predators because of my size, and I had a sexual assault just before the pandemic. Someone weaponized my wheelchair to grope me and refused to get out of my house. I feel my most vulnerable around men and struggle with dating as I’ve had my boundaries and trust abused and ignored time and time again. I absolutely have my guard up when it comes to men and dating, but can you blame me? This is something I’m working on because I most certainly do not want to tarnish all men based on a few bad apples, but I’ve got quite high standards because I don’t just need to be in a relationship for the sake of being in a relationship. It’s complex. It wouldn’t surprise me if I met someone who was non-binary or someone who is not so linear in the way of being. I’m very much a person who sees another person for who they are.