Despite living in our house for over 25 years, my twin sister Rianna has not seen most of it. She loves to cook, but can’t enter her own kitchen. She would love to be able to have a bath, but hasn’t had one at home for over 15 years. Like many other disabled people living in Britain, she experiences struggles with limited access, spending the majority of her time watching TV or YouTube in the two rooms of the house she can enter. During lockdown, many of us have had to contend with the suffocating and frustrating reality of being stuck at home. For Rianna and millions of other disabled people, this is the norm. Where we have relived the same days over again for months, some have done so for years.
Our experience growing up as a pair of identical twins was quite unique. A difficult pregnancy and the occurrence of Twin-Twin Transfusion Syndrome (TTTS) meant we entered the world premature and vulnerable. Born at a weight of 2.6lbs compared to my 1.4lbs, and arriving one minute before me, Rianna has always been the stronger one of us. It wasn’t until around age one that her cerebral palsy was picked up by a paediatrician and my parents. As a child I’d always wonder how she was able to recover from so many surgeries; how she showed no fear going into theatre or during her numerous stays in the intensive care unit. Rianna shows a mental strength and resilience that I admire.
Rianna is stubborn, cheeky and forthright. I am inquisitive, shy and sensitive. Like most twins, as children we always looked out for one another, felt each other’s emotions and had our own unique twin language. With the imagination that only a child could possess, I unknowingly adapted childhood games to ensure that she could play. One of our favourites occurred in the form of a taxi ride, with me riding on the back of Rianna’s wheelchair and her driving me around the house, dropping me at different ‘stops’. These were simpler times, where we worked in tandem with each other, as two parts but one unit.
My sister was my confidant and my mouthpiece. Any emotion or upset was only voiced to her and her alone – I communicated to other people in the form of hidden notes. She knew when I was upset without my saying so and cared for me as much as I did for her, which happened to be a lot due to a fairly hostile home environment and parents going through a separation. But I was her protector. I did my best to shield her from the worst of any parental arguments or domestic violence. At times, when I could have left tense and anxiety-provoking situations, I stayed and distracted her, knowing that Rianna did not have the small escape that I did.
Understandably, Rianna was the more attended to of the both of us, which left us frequently fighting over the affections and attention of our mother. From the outside looking in, our attachments with her would look anxious at best. I often wonder what the psychologist Mary Ainsworth would make of this strange situation. As a child, I was increasingly aware of how little time my mother and I spent together, how little we knew or spoke to each other. I was a daddy’s girl but I always yearned for some attention from my mother, who was too burnt out from caring for my sister.
“As Rianna’s isolation and physical limitations became greater and our interests differed, we gradually drifted apart in closeness”
As we grew older Rianna’s health deteriorated and became more complex, requiring numerous big operations such as a spinal correction for scoliosis and a double hip replacement. I can recall us having a birthday party in Guy’s Hospital one year after a particularly long stay. I’ve always been so amazed at how much she has endured and how brave she is in the face of surgery. However, as Rianna’s isolation and physical limitations became greater and our interests differed, we gradually drifted apart in closeness. Things that other twins were able to do, such as playing practical jokes on our parents and being together in and throughout school, were not possible for us. Our “twinhood”, despite its identical genetic composition, was very… different.
I think we both carry around anger about that, but not anger that is misplaced, or directed at each other. If anything, it’s anger towards the limitations of our sisterhood. Due to our physical and developmental differences, we’re no longer able to connect on an interest level, but we still speak up and look out for each other if need be. My role in Rianna’s life has become less twin sister and more carer and advocate. In a way, this has built a sense of loss and some resentment on both sides, with Rianna often seeing any advice or suggestion as a critique, or as me being motherly. She frequently reminds me that “I am an adult!”. She is never shy to speak up for herself.
Slowly I began to develop a type of survivor’s guilt, being the “healthy” twin. I was weaker, smaller and younger but TTTS meant that as the larger twin in the womb, Rianna had helped replenish my oxygen levels, causing the oxygen deprivation that led to her cerebral palsy. I did say we’ve always looked out for each other. And so, we both survived, but with consequences. It was drilled into me by my father and by my subconscious that it was my duty to do well in life so that I could provide and care for my sister until I could no more; to take on the life-long dedication and responsibility that so greatly changed my mother.
So, as the less physically limited twin, I have always used my privilege and knowledge to advocate for Rianna and other vulnerable people. For a year and a half, my family and I have been contacting local MPs and councillors, charities, architects to try and have our home adapted. We’ve applied for grants and the TV show, DIY SOS. We’ve started to raise money via a GoFundMe page and have taken part in fundraising activities, such as firewalking and a 24-hour dance-a-thon. Our aim is to close the funding gap between what the council provides and what is required to make our home safer and more accessible. We need mobility and personal care equipment such as track hoists, major structural renovations and better heating.
“Where one of us may lack in strength, the other has always provided”
Before we began this process, what made me more anxious than anything else were financial constraints. I wanted to be able to maintain my career to prepare for a time in the future when my mother would no longer be here. But how was I supposed to have my career and still be able to care for my sister full-time? My mum had to stop working in 1997 to dedicate herself to Rianna’s care. How would I afford a house adapted to Rianna’s needs and large enough so that I could house my future family and my twin under the same roof? These thoughts had always felt so heavy, until now. Even though these are real problems that I’ll have to address, the fact that the community has wanted to donate and provide support, helping us meet half of our fundraising target, has given me hope.
I’m confident that Rianna’s quality of life will greatly improve and I plan on helping others who face similar challenges once it does. My twin sister deserves an accessible home, a safe home, where she can regain and enjoy her independence. A home that is comfortable and a home that can suit her long term needs as a disabled person who is a wheelchair user. This project is one of many battles Rianna has faced in life and it won’t be the last, but as her twin sister, I will be there every step of the way. Where one of us may lack in strength, the other has always provided.
Lauren Campbell-Thompson on behalf of Rianna Campbell-Thompson. Donate to the ‘Support disability adaptations for Rianna’s home’ GoFundMe here.