Living with a disabled brother

“You won’t believe what my sister has done, she only went and stole my white dress and spilt red wine all over it! That cost me £120!” “My brother told my mum he saw me kissing my boss outside the house again and now I’m grounded!” It always amuses me listening to these stories of descent and deceit, of the hooks to the right eye or the shouting matches about who gets the front seat in the car and I truly think there’s nothing more special in the world than the bond shared between siblings, even when they are behaving like absolute shits to one another! I laugh at the tales of absurd arguments and smile at the comic expressions of subtle love I see between my friends and their brothers and sisters and yet sometimes, if I’m brutally honest, I do find myself plagued with the smallest pangs of resentment when hearing these recitals and I do find myself slightly saddened when seeing young boys play football in the park because I know I won’t ever have or see these things with my own brother. Harry is a delightful, cheeky and generally happy young chap who is 18 years old but has the mental age of a 2- year-old. He is blind, can say only 6 different words and suffers with severe autism, but don’t get me wrong his lack of vision has not impaired his capacity to somehow lob toys directly at my head and burst into a fit of laughter when said object near-concusses me. In that sense he plays the sibling role rather too well…

My parents and those who have looked after me in my younger years have always been extremely careful to ensure that having a disabled child in the family would not hinder or limit my freedom, my opportunities or my sense of self and so I have always grown up adoring my brother and also thriving as my own person. This is actually not often the case with people related to disabled children and I do think that having the luxury of a substantial amount of money for a special carer has really made my family’s experience of having a disabled child easier from a practical point of view. In cases where money is not so readily accessible I have seen a common trend in which able siblings of disabled children become caretakers which results in them missing out on opportunities to go out and have fun with their friends or in more extreme cases, missing out on opportunities to study properly for school and university. I am lucky that we have an extremely wide and loving support network for Harry comprising of some of the kindest and most genuinely good people I have ever met in my 20 years of living. Every cloud has its silver lining, I have learnt so much about love and kindness from these people and now consider some of them as good as family. Harry is loved and he is incredibly well looked after, as am I, so by no means will this post be all doom and gloom, but quite the opposite.

Despite this optimistic and fearless perspective of having a disabled brother there is always going to be that underlying feeling that I alluded to earlier of thinking of what could have been and how things could have turned out. I suppose maybe the first lesson that having a disabled sibling therefore teaches you is exactly how to train oneself to make the very best out of situations that do not play out as we had expected them to. I think whilst the feeling is unavoidable and does creep up on me from time to time, I have spent a lot of my life learning to love Harry, and it is a love you learn rather than a love you have from the offset. This may sound harsh, but it is really incredibly hard because he cannot speak or sympathise or entertain or do any of the things that would usually make me love a person. It is incredibly easy to spend your whole life resenting the things that “go wrong” or not to plan per say, but this, as I have learnt, gets you nowhere and also just ends up making you pretty damn miserable! Also, I should be really careful with my words, Harry is not “wrong” and that’s why I place it in speech marks, he is just different to the norm that is considered to be “right” or “normal”. So, whilst I absolutely do love Harry, it really is a process and one that I learn more about every single day when I interact with him. I do of course wish he could have had the joy of growing up and kicking a ball and being a terrible flirt with men or women, and wish I could have seen him be funny, intelligent and talented as I’m sure he would have been, but I have learnt over the years that thinking like this only serves to harm me and how I think about Harry. This is another thing having a disabled sibling teaches you: to simply love people for who and what they are rather than loving an idea of something, which is actually really easy to do. When you love the idea of something or you fall in love with a hypothetical you actually stop yourself from loving what actually is or what actually does exist. Harry is simply Harry. He has his big grin and his dirty little laugh and beautiful tight hugs; he is affectionate and easy-going, and I love him for all of that and for his cloudy blue eyes and his subtle but brilliant cleverness. He cannot see and struggles to walk but taught or conditioned himself to bend his knees slightly because it stabilises him. He also laughs at jokes before other people do and furthermore is able to navigate the entirety of our house from top to bottom without any assistance. If you’ve ever tried walking blindfolded down the stairs (and I have) then you will understand that Harry is actually a rather brave and clever little chap for learning how to do it.

Although I rarely complained about Harry as a young child, I do have a few really distinct memories of the experience I had of growing up with a younger disabled brother. Firstly, it makes you mature into an older version of yourself really rather fast, which I have mixed feelings about, though I am grateful overall. I remember being 5 years old and fuming that Harry got all the attention at a lunch party. I felt like I had been cast aside and was profoundly upset that I didn’t get to show everyone my rendition of a dance to ABBA’s “money, money, money”, which in hindsight I’m rather glad I wasn’t able to perform (it was truly awful). When all the guests had left I shouted and screamed at my dad in a tantrummy rage, stating this: “nobody loves me and no one cares about me or anything that I do”. Yes, I absolutely should have auditioned for Eastenders, it was excessive to all extents, but it was how I felt at the time. My dad grabbed hold of me and said, “don’t you dare ever say that again, you know full well that me and your mother have never let Harry cloud anything that you do nor will we ever let that happen.” He was entirely correct, but it was just another case of learning that throwing one’s teddy out the pram was not necessarily fair when I considered everything my parents did to make my life truly brilliant. Learning this at 5 really is quite a lot to take in as 5-year olds mainly behave on the basis of instinct and their emotions rather than on a capacity to rationally consider their opinions, thoughts and feelings. Again, it was a hard lesson to learn but one that I treasure and carry with me even in my adult life. The second lesson would come from Rona who really is one of the most beautiful souls on this planet and a woman who looked after me and has looked after Harry for the entirety of our childhoods. She is really very special. I remember people used to look at Harry intensely in the park and I’d get incredibly upset and embarrassed and even angry but Rona would say “they only stare because they don’t know what’s wrong and they are curious, they aren’t being mean, let’s go over to them and ask if they want to say hello to him.” She would smile, she would explain and whatsmore, she was never, ever embarrassed by him. In fact she was really rather proud of Harry and had no issue showing it. I need not say much more, learning to unashamedly love is one of the most precious things on the planet and I learnt that from a very young age. I am infinitely grateful for Rona and Harry and our little park at the end of the garden - it was a playground for growth and taught me a lot.

One thing that having a disabled sibling really does impact on in a fairly negative way is a marriage and how a family operates all together. We have missed out on a number of holidays and family lunches and events that we would attend as a family because someone always needs to be at home to look after Harry and the events often just won’t be suitable for him. This leads to fragmentation - ultimately one parent can attend an event but the other cannot and this is I think, is the hardest thing to not be resentful of. I have found myself sat at family events wishing both my parents could be there when only one of them is and yet I have also found myself feeling incredible levels of guilt when both my parents are there and I feel a really deep sense of relief that Harry is not because they both relax and enjoy themselves, which they don’t do if Harry is present. You simply can’t really take your eye off him or he’ll smack into a wall or destroy something, so it is really quite consuming. 70% of couples that have a disabled child actually end up divorcing and so seeing my parents’ marriage really suffer has been perhaps the most heart-breaking thing about having Harry as a brother. This bit really is the thing that saddens me and affects me most. Hearing that they probably would have had 2 more children had Harry been normal really has a nasty bite to it and is always the point at which I really have to catch myself and stop myself from resenting our family’s situation. It also takes a lot of belief and strength to teach myself that love between parents is normalised and that I can have a happy relationship despite seeing one that was not at all romantically happy for most my childhood. It all connects and goes straight back to Harry and that really is a difficult thing to grapple with and one that I have grappled with heavily and philosophically for most my teenage years. This being said, watching my parents interact and live together despite them not being romantically in love has also taught me about endurance and whilst they may not be the most idyllic couple, they adore each other as people, are hilarious together and really do try to understand one another. Though this has taken me a long time to understand myself, I think they demonstrate a really important kind of love premised on mutual strength rather than on passion or erotic love. My family may not be as functional or normal as others, but I truly think I adore and admire my parents more than I think I would have done had Harry been an able child. Again, it is hard, but you learn a lot and think a lot and actually love a lot and there’s no three things more important in life than being able to learn, love and think.

If anyone has any questions about Harry or has similar experiences that they’d like to share then I’d love to hear them and get in contact!