Growing up with a sibling who has a disability can be hard and complicated. Its distinctiveness is unclear until you are exposed to other family environments. You don’t realise how unique your experiences are until you have another canvas to compare yours to. This can be especially difficult at an age where you are finding, defining and creating your place in the world, or even when you’re just trying to figure it all out.
My brother has an intellectual disability. People with an intellectual disability may have difficulty communicating, learning, and retaining information. This makes me a sibling of someone who has a disability. About 3% of Australians have an intellectual disability, making it the most common primary disability (Australian Institute of Health and Welfare).
The conversation about siblings of children who have disabilities is often quiet, if not muted. Siblings who are also young carers often have very different expectations placed on them. What is required of them, and their role in the family, is always changing and dependent on contingent circumstances.
Personally, in my household, my parents are very reliant on me. Overtime, this relationship has become less reciprocal, where I am not as reliant on my family. Throughout my life, my parents have not had a lot of time to dedicate to me. Growing up, being shy and quiet, my needs were often neglected, and I didn’t receive a lot of attention. As a result, I had to grow up quickly. Obligatory independence and feelings of loneliness are common among siblings of children with disability. You learn to navigate the world yourself and with very little help.
As a child of an immigrant, and as anyone with immigrant parents would know, the expectations parents place on you can be intense and tough. This was amplified by my brother having a disability. In general, my parents took a while to adjust to my brother’s disability, and they still have long path to fully coming around. They still have trouble being considerate, understanding and knowing what his limits are. I often have to act as a mediator, a voice of reason and a bridge of communication. My parents did everything in their power and capacity to help my brother in school, but they often found themselves disappointed. This translated into almost unrealistic expectations for me. I found myself feeling inadequate, no matter what the results of my endeavours were. This, for me, internally manifested as perfectionism. Not only did I endlessly deflect failure, but I would also keep any emotional turmoil to myself. Having a sibling who has a disability, I felt guilty and didn’t want to add more weight onto my parents, so I often find myself bottling up emotions, shortcomings and misunderstandings.
My role in the family was also influenced by my gender. Emotional labour has been a prominent part of my role in the family from a young age. Emotional labour, a load often taken on by women, is defined as consistent, arduous and under-acknowledged work that is commonly gendered, taking place in either a workplace or household context. As I have aged, the burden of work at home distributed to me has multiplied. All the household pressure and responsibility of traditionally feminine work such as cooking, cleaning, doing the laundry and helping my other siblings with homework, to smaller acts like remembering everyone’s birthdays, filling out forms, making phone calls and tracking everyone’s schedules, has fallen to me.
I understand that the weight has fallen on me due to a multitude of factors such as growing up in a low income immigrant family, the gendered expectations of being a girl and having a sibling with a disability. I have gotten a lot better at managing my place in my family and making myself and everyone else, feel comfortable and at their best. Along the way, I have accumulated a few tips for anyone else who might want some advice and also has a sibling with a disability:
Don’t forget to take care of yourself. Self care is really important, regardless of your circumstances, but it is especially important when you are a carer. Being a sibling of someone who has a disability can be stressful and emotional. Take time to do something for yourself, even if it is small. It is always important to have empathy for yourself, so you can do your best when caring for others.
It is okay to feel down sometimes. Having a sibling with a disability can be hard, and you can often come across emotions that you don’t know how to deal with or feel guilty about. I often feel very protective of my brother and am worried about his future and how we will find his feet in the world. It is okay to feel like this. Just find some healthy ways of expressing and dealing with your emotions. Whether that be through art, music, reading, or anything else you are comfortable with.
It is easy to feel helpless as a sibling of a child with a disability. However, knowing that there is help out there for your sibling and yourself is reassuring. These resources helped me out, but know that there is a lot more out there:
Although it may seem like it, your parents are not intentionally treating you differently if they do. Speak up about how you’re feeling, even if it feels like it is not the right time. Suppressing emotions and inner conflict will only feed resentment. If there is too much pressure on you, talk to your family about reducing the amount of work you have to do at home. Having your feelings heard is important not only for your mental health, but also for healthier family dynamics.
Looking after your sibling, even when they are older than you, can be a difficult task. Sometimes it may feel like a burden and tiresome, but always come back to love and empathy. Your siblings have a special role in your life that can never be replicated. People with disability are really fun and unique, and they will really change your outlook on the world. Embrace it, and be proud of your sibling.
Growing up with my brother has taught me a lot about resilience, compassion, co-operation and empathy. Although my idea of home is different and sometimes painful, I wouldn’t change any of it, because my brother has really shaped the person I have become today and will always have a special place in my heart. The experiences of having a sibling with a disability are nuanced and intricate, and it is important to start conversations around these subjects. People with disability bring diversity and value to our communities, and everyone should make an active effort to be more inclusive and to listen to their stories.
Sanduni Hewa Katupothage
Sanduni is a body and a soul: a human. She is interested in arts, science, social justice and spirituality. She also loves lemonade and cupcakes.