“He ain’t heavy, he’s my brother” - Reflections of a Young Carer by Alicia Jenkins
Alicia Jenkins explores the experiences, gifts and power she's found in caring.
It’s a sunny afternoon and I’m sitting in the garden with my younger brother Luke. Different multicoloured flags litter the floor like confetti, his headphones blast out the same movie he’s seen a hundred times before (Mary Poppins) and he’s staring at the trees while humming slightly. This is a fairly typical afternoon for him, for everyone in my family.
Luke is 18 years old. He’s intelligent, caring, has a cracking sense of humour and he’s also my younger brother. Luke is also disabled. He has a dual diagnosis of Down’s Syndrome and Autism; he also doesn’t communicate verbally. He can also remember almost any fact you tell him and taught himself to read. When I ask Luke what he wants people to know about him, he replies: “I am happy. I am very clever. I love learning things.” He’s completely right. He is clever. He says his favourite subjects at school are: “Science and history” and he “loves learning about famous people and what they have done.”
My relationship with Luke has shaped a great deal of my own identity. In many ways the roles of ‘older sister’ and ‘carer’ ebb and flow into one another. Anyone who has looked after a younger sibling can understand the responsibility and patience young carers have to develop. However, the roles are also starkly different in several ways. Growing up as a young carer, simply put, means taking on duties and responsibilities that other people my age may not have had to do; feeding him, helping him communicate through spelling, learning Makaton sign language (although he never ended up using it) and helping him get dressed. Luke needs pretty much round the clock care, which is mainly done by my parents. But the all-encompassing nature of the help he needs has meant that I’ve played a big part in providing this too. This is very much the description I give when someone questions me about what a young carer is or does. It is an easily digested list which often will elicit the response ‘wow, you’re so caring’ or ‘he’s lucky to have you!’. I know people are mostly searching for the ‘right thing’ to say when faced with an unfamiliar situation, but these responses and the swift searching to find another topic to discuss are some of the reasons why I often resist talking about it. He isn’t lucky to have me, I’m lucky to have him.
To be fair to them, it’s often difficult for me to find the right words to talk about or encapsulate my relationship with Luke. In many ways, it’s like asking anyone to succinctly explain their relationship with their sibling. However, this is also not a typical sibling relationship. It is one that is complex and multifaceted. There are about a hundred things I could write about it. Fundamentally he is my brother, who I love more than anyone else in the world. However, it is also at times a stressful relationship.
Growing up with a disabled sibling presents its own unique lessons and experiences. Despite there being an estimated 700,000 young carers in the UK, (young minds) there is a general ignorance around their roles and the challenges they face. The Children’s Society report that one in three young carers have reported mental health issues and 27% miss school because of their caring responsibilities.
I remember all the times in primary school where I missed out on sleep because I was waking up at 2am. I remember being pulled out of school because he was in the hospital and was seriously ill. I can still feel the all-encompassing anxiety before we went out as a family, Luke in his wheelchair, anticipating the stares and sly comments I would hear. I remember the shame of Luke hitting me, pulling my hair or biting me when he would have a meltdown, thinking to myself: ‘if this was any other relationship this would not be okay.’ I dealt with some powerful emotions and harsh realities at a very young age. Taunts and vicious comments from classmates, blatant abuse from strangers, insults dropped like anchors into my lap and the incessant staring reminded me of both Luke’s and by association my, ‘otherness’. While Luke was often the direct target of these occurrences, my dual roles of carer and sister meant that I had and always will be his most ardent defender.
In many ways I suffered because of it. I was extremely socially anxious as a teenager. Defensive, hostile and angry at the world for the injustices I saw Luke facing. I felt angry for Luke. Angry that the main issue Luke faces is having to adapt to a world that doesn’t value him for who he is.
He is living in a world that is not made for him.
However, this is only one part of the story. Ultimately, being Luke’s older sister and carer has given me the most wonderful gifts. There is so much joy to be found throughout my life and in my relationship with Luke. I feel like being a young carer has made me more patient with others, a better listener and it has made me recognise the importance in empathy and understanding towards others. It has also made me realise the importance of standing up for other people, even if this sometimes means you’re alone. Young carers have a great skill set that they have gained from caring. They’re empathetic, kind, responsible, hard-working and resilient. These are things the world and people around them will greatly benefit from.
Their insights and perspectives, along with those of disabled people themselves, are valuable and should be seen as such. However, I am also aware that I am in a privileged position when it comes to being a young carer. I have never been his sole primary carer, I have never had to take on a job to support my family, I have never had to choose between caring and education. There needs to be more support and resources for young carers. Much has changed in the last 30 years to make the lives of disabled people dramatically better but there is still more that we can do for both them and those who care for them. More support for young carers can start simply with more discussions and awareness of them and the roles they fulfil. Many young carers struggle in school because they are not given enough support to help them manage schoolwork and their responsibilities. More needs to be done in both identifying young carers and supporting them in order to make the world a fairer place.
When I asked Luke what he liked about having a sister, he said “She is my best friend.” Nothing will ever make me prouder than knowing that’s how he sees me. He’s my best friend too. We have a unique bond that will last us for the rest of our lives. No matter the difficulties or hard times in our relationship, I know we’ll always be there for one another. His unique perspective on the world is powerful and important. Advocating for him and helping other people see the world through his eyes will always be both the greatest honour and privilege.
Resources for young carers:
Hi I’m Alicia! I’m a third-year student at King’s College London where I’ve studied War Studies BA. I’ve not always considered myself a good writer but I’m learning that I have powerful and important things to say and I’m so grateful to Matriarch for giving me a platform to share them! I like writing about my experiences as a young carer and hope that reading my work might encourage other people to reach out to the carers in their life and facilitate conversation that leads to better support for young people who care for others.