Editor’s Note:We know disabled students need better support in schools, but so do the students who have already stepped up to the task. As Claire-Louise Williams shows us in her essay, many students-called “young carers” – are caring for their disabled relatives or friends in addition to themselves. But if they are going to pick up the slack for teachers, then teachers- and society in general – need to give them some slack in return.
How many people do you know who have a legitimate excuse for repeatedly turning up late to school or University, or for not completing assignments or homework on time?
More than 300,000 young Australians do.
Young Carers are people up to 25 years of age who care for someone with an illness, disability, mental health issue, who are frail, aged, or have an alcohol or other drug dependency. Of these 300,000 young carers, over half of these are under 18 years of age. The person they care for may be a parent, partner, sibling, their own child, a relative or a friend.
Being a young carer can be a positive experience, and I should know. I have been a young carer my entire life.
I first met Chrissy in kindergarten. We were the social outcasts, she in a wheelchair with Cerebral Palsy and I with undiagnosed autism. Neither of us spoke, not to our teachers, not to our classmates and not to each other. The one thing I do remember, however, was the hatred I felt towards our teachers for leaving me alone to be almost entirely responsible for Chrissy – the girl who became my best friend for life.
Autism is sometimes called an invisible disability – it is forever present, interfering in your life, but it can’t always be noticed from the outside. The flapping arms or mindless calls are a giveaway for those who have severe autism, but people like me, who are high-functioning, are usually assumed to be the oddball, the crazy kid that can never fit in – that weirdo nobody ever wants to befriend.
It wasn’t until I graduated from high school that I found out that I had a diagnosis of both Asperger’s Syndrome and Savant Syndrome. I had spent 18 years trying to be like my peers when it was never going to happen. It turns out that my brain is so unique, only a tiny handful of Australians have this condition. Although I have one of the highest IQs ever recorded, you will never catch me making eye contact with my friends, or neatly handwriting the perfect essay, or even being able to tie my own shoes.
Savant Syndrome means that I can recall every single word that I have ever read or heard (including dictionaries and encyclopedias), yet there is no room in my brain to store the simple steps required to tie a shoe lace, tell the time or recite the alphabet. I can recite even the most obscure of facts yet fail a spelling test not ten minutes later. It is a demon, striking blows throughout my life, but also my knight in shining amour.
Without this diagnosis I would never have met my best friend, nor know the privileges of being a young carer.
Chrissy is the sister I never had. We were inseparable by grade 1 and by grade 2 I was her only form of mobility. I spent my lunchtimes pushing her wheelchair around the pathways, waiting for her to go to the bathroom after lunch so we could return to class together, making sure that she joined in on class discussions and class activities when she didn’t have assistance from an aide.
To this day I will never forgive the school system that forced that responsibility on me. I was a child with a disability who was almost entirely responsible for another disabled child. But at the time, I didn’t know any different. We were so used to the bullying from the other kids that we never bothered trying to join in. Every lesson, every lunchtime, every weekend we would stick together. I never spoke a word until I was 9 years old, and she couldn’t control her body, so in a sense she was the voice and I was the muscle.
Even today, at 23 years of age, I cannot believe how reliant Chrissy was on me purely due to our teacher’s indifference. By grade 8 I was regularly being pulled out of class to attend to her needs, medical, emotional and otherwise, because of inept teachers and aides. Considering the amount of work that I missed out on, it is a miracle I graduated from year 12 at all.
Just out of school, I gained employment as a tutor for Young Carers. My reaction – what the hell is a young carer? At 19 years of age, I had no idea. It wasn’t until I started working with these kids on almost a full-time basis that I realized my role as Chrissy’s best friend also made me a young carer.
As I worked with kids, some as young as 7 years old, I realized that the responsibilities I’d had as a child perfectly fit the role that these kids were playing now – helping out with feeding and drinking, medication, mobility, cleaning up before and after a meal, getting a relative or friend out of the house, keeping them safe, changing their clothes, moving them into a more comfortable position, and just watching out for them and making sure that they are safe.
The more time I spent working with these kids, the more I realised how little support there is for young carers in Australia. Every single young carer I have ever spoken with has emphasized the positive experience that their caring role has brought to their life- before listing the many pitfalls of this role. Research conducted by Carers Australia, Carers NSW, Young Carers NSW and various other agencies indicates that, when inadequately supported, carers’ own health, mental health and wellbeing can be seriously affected.
I definitely identify with this message. Chrissy is my best friend, but when I am with her I am constantly exhausted. Imagine getting out of bed, having a shower, getting dressed, eating breakfast and leaving for school, then imagine doing it all over again. Imagine every single task you complete every day- having to do it a second time. Imagine how exhausted you would be at the end of the day when you had done everything twice in the same amount of time everyone else has had to complete the tasks only once.
Some days all you can do is fall into bed the second you get home from school. Some days you can’t even make it to school because the person you are caring for needs you at home. Sometimes you can’t even get out of bed because the sheer exhaustion from yesterday is too much. And on top of all that extra work, the washing, cleaning, food preparation is homework, assignments, test preparation…the list continues.
Young carers are largely ignored in society and most do not receive the help that they need to complete school and become functional members of society. Most of these kids don’t even know what being a kid is about, as they have played the role of an adult for so long.
From talking to the kids I work with, I know that spending lunchtime in detention is a regular occurrence as most schools simply do not recognise what it means to be a young carer, nor the prioritization that life requires for kids in this position. Homework is a task, just like school, but caring for the person is a job. It is not something you can take the day off from, because if you don’t do it, who will?
There are over 2.7 million unpaid carers in Australia, and 150,000 haven’t even managed to graduate high school yet.
In April this year I attended a leadership program for Young Carers. Through this opportunity I made a whole bunch of new friends, every single one of them in a similar position to myself. They were all struggling for merely a passing grade at school or university, and every single one of them was juggling their caring role with other responsibilities. Since this time, I have done a lot of research into the assistance young carers receive in other countries and I have come to the conclusion that young carers in Australia are grossly under-supported.
I began pursuing the idea of the Young Carer ID Card, a program used throughout the UK which assists Young Carers to identify themselves within the community. This card allows Young Carers to access reasonable adjustments- for example, late sign-in at school if they have to attend to their caring duties, or an extension of time to submit assessment tasks. These services are vital to these kids, as otherwise they would be unfairly penalized for their caring responsibilities.
The problem is, however, that before these cards can be introduced, schools Australia-wide need to be made aware that young carers exist within their schools- an average of 2-3 per Australian classroom- and that they are a minority group who has additional needs that require assistance.
My start-up idea for this campaign would be to provide an information booklet to schools Australia-wide, informing them about the plight of young carers and instructing them on how to identify and support carers within the school community. I would also like to provide posters or other forms of information to families Australia-wide so that more young people will identify as Young Carers and come forward to access the support that is currently available.
Young Carer ID Cards would be another step in supporting Young Carers to complete their education and enter tertiary education, as currently the rates of young carers achieving this are approximately half of that of the general population, according to Carers Australia.
In order to achieve this, I have had to undertake much research, including cold calling government offices and the department of education in order to pitch the idea. Through this process I have made a number of contacts who are currently acting as a network of advisors to assist me in moving this program forward.
These contacts include organizations that I contract to in order to provide tuition to young carers and schools throughout the Wollongong and Illawarra areas. I have also been involved in work with Carers NSW (the main body who supports Young Carers in NSW), Disability and Counselling Support Services, and have also participated in many media campaigns to increase the exposure of young carers in the media.
I can only wish that I had these supports in place when I was at school, but if I can make these supports available to other Young Carers, then my childhood will have been entirely worth it.