‘My sister, Katy’, the three most common words which come out of my mouth everyday. Like any little sister, I absolutely idolised my big sister growing up. I always knew that she was different but I didn’t fully grasp that being ‘different’ wasn’t really accepted by society. I always saw my sister as the most beautiful person in the world and wanted to be just like her. I still joke now ‘Katy, how did you manage to steal all of the good genes!?’. Back then, other people didn’t respond to my sister in the same way as I did and it was those other people who made me begin to see the world very differently. One which Katy and I didn’t fit into, at least not without judgements, questions and excessive staring from members of the public.
Above: Alyx and her sister, Katy
Katy has profound and multiple learning disabilities
My sister, Katy, was born in 1978, the first of three of us. Perfectly healthy until delivery, Katy was born with a traumatic brain injury as a result of hospital negligence when forceps were applied to her tiny head incorrectly. As a result, she has the developmental age of a 6-8 month old baby, profound and multiple learning disabilities, epilepsy, cerebral vision impairment and she is registered as blind. She was not expected to survive her first night of life but, in true Katy fashion, she fought and was eventually given a life expectancy of 40 years old. She will turn 45 years old in August of this year.
Our mother raised my siblings and I single-handedly and the strain of caring for someone with such complex and demanding needs is something which remains extremely difficult to watch. Our mother is now 69 years old and continues to care for Katy single-handedly. This includes feeding, bathing, ensuring she accesses social activities, attending appointment after appointment, organising finances, managing medications and fighting for Katy’s place in society. My mam is a pensioner who is ‘retired’ yet she is a full time carer, advocate, nurse, cook, gardener, taxi driver, nightshift worker, activities co-ordinator – you name it. The real list of family care duties is truly endless and would be far too long to list.
I was a young carer and was bullied at school
When you’re a sibling of someone who presents in a way which is so different to how society teaches us we are supposed be, it can really affect you growing up. Going to school in the 90s and early 2000’s, disability wasn’t spoken about in the way which it is today. To me, Katy was normal. I was so confused when she wasn’t classed as “normal” to everyone else. Bullying was certainly a difficult aspect of being a sibling and then going home at the end of the school day to try and complete homework with Katy often crying and screaming in the background was ultimately impossible at times. The teachers would never understand this and my grades and confidence began to plummet but there was no support for kids like me at the time. Getting to the end of GCSE’s was a never-ending nightmare and I’m still not sure how I managed to scrape by with just enough to get into college. Without a father to support us at home, I felt my caring role needed to step up. Watching my mother work tirelessly for all of these years on her own has been the most difficult part. I would try so hard to ease the workload for her while at the same time trying to manage my own mental wellbeing. Tensions were often heightened at home when I was a teenager because I was so upset at the world for what had happened to Katy and how we had been treated by society. My mental health was in tatters but back then there was little to no awareness of this, especially for siblings. I reached out for support but felt completely misunderstood. After all, what did I have to be depressed and anxious about when I was the ‘able’ child?
I left home at 18 and along came the guilt
As soon as I turned eighteen I left home and moved to the other end up the country but of course then along came the guilt. For trying to do what was right for me and for trying to find my own identity away from Katy, I felt like a failure as a sister and I soon found my way home to her. As I healed myself along the years and turned my pain into passion, the feelings became easier to manage and I was able to create a path which honoured both Katy’s and my own experiences. It has been a long road but I feel at peace with the balance we have now although it can still be difficult. Katy is still very isolated from society due to how distressed she can become. When she feels this way, I want to do everything and anything I can do help her but it’s difficult when she can’t tell you what is wrong. This will be something which we manage for life but I am much more confident now to try out different calming strategies and to help Katy with her understanding that she is safe, loved and cared for.
Being a sibling has shaped my career
Growing up, especially when I hit my teenage years, all I wanted was to be able to speak to my sister about my troubles. She would listen and I would wrap her arms around me to cuddle me but did she understand? I would never really know. If Katy was upset, I would comfort her in the same way and during these moments I soon began to realise that music was a powerful tool which Katy could use to calm down and to engage with me. I would play guitar and Katy would reach out to feel the strings. I would sing and she would make some gentle (and super cute!) vocalisations. I noticed she looked up and towards me when we engaged with music and to feel that type of connection with my sister was just indescribable. This encouraged me to study towards a degree in Music and I then achieved a PGCE for Specialists in Learning Difficulties and Disabilities. Something which I still struggle to understand is when people assume that Katy has no quality of life. As if her life has no purpose. This is one of the judgements which has cut me to the core in the past and it’s the reason for the path I have chosen. What people don’t realise is that Katy is an exceptional woman who faces more each day than most do in a lifetime. She is the epitome of strength and she is not only my sister, but my greatest educator. So for me, working towards a career in Katy’s name is only right. I am now a Qualified Teacher of Multi-Sensory Impairment, working with children and young people just like Katy every day, using the tools which she has equipped me with – music, passion, compassion, understanding and strength. And in turn, my studies have opened up a world of opportunities for Katy. I can now provide her with so much more from what I have discovered and I have a greater understanding of how she may be experiencing the world.
I’ve always hated that Katy has been missing from key life events
One of my greatest challenges as Katy’s sibling is the guilt. Why was it Katy and not me? Each achievement or milestone is celebrated and followed by guilt. I suppose my career helps me to navigate around those feelings but they’re always there. It’s something you really have to manage. I have always hated that Katy has been missing from key life events such as graduation or important birthday celebrations. It never sits right with me but I understand that she would find these events overwhelming. I have always dreamed of Katy being at my wedding one day and the time for this has now come. We are currently trying to plan a way for her to be a part of our wedding day this Summer but it’s extremely difficult. Every life decision is determined based on how Katy is feeling, if she’s happy or if she’s distressed. I will continue to hope that somehow, someway she can be there.
I’ve planned for Katy’s future since I was 7 years old
Being a sibling can be quite scary at times, especially when Katy’s health deteriorates or when making plans for the future. For as long as I can remember, our mother has spoken about what will happen to Katy when she is no longer here to care for her. I’ve been making plans since I was about 7 years old to prepare and have always been determined that Katy will live with me if and when that time comes. Having to think so far into the future in this way can take a toll on your mental wellbeing. It can create a lot of anxiety and fear.
The advice I would give to other siblings would be to reach out to others who are in the same boat as you, through charities like Sibs. I think it’s important to understand that feelings of guilt and anxiety are very normal when you are a sibling of someone like Katy. The first step is to accept them and to know that you aren’t alone. It’s so important to manage your mental wellbeing and to understand that just because your sibling has a lot going on, it does not mean your feelings should be pushed to one side.
When you experience your own life, guilt might come creeping up but fight it as much as you can. You are absolutely entitled to fall in love, get married, graduate, celebrate and more than anything enjoy living your life using all of the unique and wonderful things which your sibling has taught you. Most importantly, I believe that being a sibling is a gift. Our experiences shape us into being giving and patient people who have a unique viewpoint on life. We are gifted with deep empathy and understanding and it is my belief that these gifts are given to us as we have been sent on a mission to offer healing and kindness to the most vulnerable. We truly are the lucky ones. Without my sister, I wouldn’t be able to share these gifts and I certainly would not be who I am today. For that I am eternally grateful to you, my sister Katy.
Above: Alyx and her sister, Katy