University student Lauren Hitchin is one of nearly 10% of 15 to 24 year old Kiwis who support an ill, elderly, or disabled friend or family member.
“NERD”, a man yells at full volume down the crowded supermarket aisle.
I carry on shopping, emulating fellow customers’ polite disregard. “NERDY,” the man tries again, projecting his voice even louder. Shoppers begin to crane their necks, trying to locate the source of the loud voice, as I become unusually absorbed in the ingredients on a packet of pasta.
One more attempt to get my attention, to no avail.
The man imitates a plane’s jet engine starting up, and boisterously breaks into a run. Shoppers gawp as the grown man sprints down the aisle with fierce determination, some customers looking around for the emergency.
He comes to an abrupt halt by my side, jet engine noises cooling, panting heavily. The crowd of shoppers gather around with bated breath as, with absolute urgency, the man makes his request.
“Nerdy, can we have hot dogs tonight?”
Meet my eldest brother Beefy, given name Andrew: 32 years young, expert impersonator of machinery sounds, WWE Wrestling aficionado, giver of nicknames, and fervent lover of Nerd’s hot dogs.
That’s me: Nerd (given name Lauren).
At 25 years old I am the youngest member of our family.
Cockroach (given names Robert Aaron) is our middle brother. He is 30 years old and works as a marketing executive in Switzerland, where he lives with his gorgeous fiancée Melissa (nickname pending).
Our father Big Balls, no explanation needed and known outside our family as Robert George, is an Australian-born cabin manager for Qantas.
Our mother Neville (given name Lindy) sadly died of melanoma cancer in July 2002, and is missed enormously every day.
And the most recent addition to the family, my partner Johnny (given name John), is an unfailingly tolerant chartered accountant, who has so far evaded a nickname!
Recently, in an effort to save money for the upcoming nuptials of Cockroach and Mel in Ireland this August, John and I relocated to my Dad’s house. Dad and Beef's house, that is.
Beef has never officially moved out, and I have a sneaking suspicion that in his mind he owns not only the house, but also everything in it!
Living with Beef after a year away from home has brought mixed emotions for me. On one hand, I am thoroughly enjoying spending more time with him. I love how Beef makes me laugh, most recently when Dad's determination for Beef to gain his independence prompted a visit to the alterations lady to have his jeans hemmed. Walking down the driveway behind Beef that same afternoon, we realised he had asked for the jeans to be hemmed roughly 20 centimetres too short. We were all in hysterics!
Though it’s not surprising: he's always been a trendsetter, that Beef.
On the other hand, living at home has reminded me of the challenges supporting someone who has an intellectual disability can bring. Beef's narcissism is exasperating, especially when I need to do something that he doesn’t want to do.
He always gets his own way.
His need to be in control means he wants to know where I am at all times. John and I can’t leave the house without letting Beef know where we are going, and the exact time we will be home. My Dad doesn’t even require this information!
Beef's longing for inclusion results in John and I frequently having a buddy in our room unless, of course, we ask him to leave, in which case he will stand outside the door breathing heavily, just listening.
My friends don’t understand the nuances of having a brother with an intellectual disability.
For the most part, they love Beef. They find his comical noises and often inappropriate comments hilarious. Indeed, his innocence and genuine nature make Beef impossible not to love. But they don’t understand the frustrations. My friends can talk to their older siblings when things go wrong and know that they understand what they’re saying.
They have the freedom to leave home and move on with their lives without worrying if their brother will have someone to hang out with today, or if he will spend it sitting alone in his room. They don’t feel guilty going out without him because he has no one else. And they don’t have to apologise for him simply being himself when people are intolerant and don’t understand.
As I write this I am holding back tears, not through frustration, but because I feel an extraordinary sense of guilt. That's the most annoying emotion.
I feel guilty that I have my own group of friends, my relationship with John, my career, and my independence: my life. Beef struggles to make even one real friend, let alone become employed, despite having so much to offer.
Sometimes I cry because I feel blessed. I have an older brother who will forever stay young and full of life; who is always eager to play board games; who will watch America’s Funniest Home Videos re-runs and laugh like he has never seen anything so funny in all his life.
I have a brother who tells me my cooking is better than anyone else’s ("even the Master Chefs, Nerd”) when it is simply a frankfurter in a bun with tomato sauce slopped on top. And I have a brother who relies on me always, making me feel needed and loved. I’m his Nerdy, and no matter how much I annoy him or take my frustrations out on him, he will always forgive me and never cease to love me. I wouldn’t give that up for the world.
There are certainly aspects of intellectual disability that make life difficult, but there are so many more that make it remarkable. Beef has taught me a lot about life from his unique perspective: don’t judge others or take them at face value; befriend people who are new or lonely; laugh out loud; yell if you want to; and be yourself without ever worrying who is watching.
He really has made me the person I am today: vivacious, fun loving, goofy, tolerant, a good friend, and insanely proud of my brother Beefy. Like many who have grown up with siblings who have disabilities, Beef has also inspired me to pursue my chosen career. I am a doctoral student at The University of Auckland, researching the relationship between people who have intellectual disabilities and their communities.
I want to help break down the barriers that prevent people from communicating effectively. If people just had a chance to get to know Beefy, they would fight to have him as their friend, as I do. I know that there are many other young people who, like me, support family members who have an intellectual or physical disability, a mental illness, a chronic or terminal illness, who are elderly, or who have a drug or other addiction.
I wanted to write this article to let you know that you are not alone in your fears, worries, and frustrations that can come with this role of family carer.
While it is indeed an honour to support our loved ones, the impact it can have on social opportunities, education, and career prospects can be hard at times. And it can be lonely when others do not understand these feelings.
Young carers are invisible in our society. We know from Census 2006 that almost 10% of New Zealand's 15 to 24 year olds identify as young carers. Sadly, we have no statistics about how many under 15s are young carers.
I look forward to working with Carers NZ to build a voice for us!
Help for young carers
Carers New Zealand is developing information for children and young people in caring situations, and for their teachers. In the meantime visit Young Carers.net (operated by the UK’s Princess royal Trust for Carers), and Carers Australia’s site … both of which have great resources for young carers.
Visit also the Facebook page of Young Carers NZ!
A Google search for 'young carers' will help you find many more groups and Facebook pages!