Tuesday, 14 May 2013

My latest blog: Check it out!

Check out my latest blog: http://youngcarersnz.blogspot.co.nz. It is all about young carers. Share it around )

Wednesday, 13 March 2013

The Adventures of Nerdy Girl and Beefy Boy

The adventures of Nerdy Girl and Beefy Boy

Being the sister of a brother with an intellectual disability

My brother Beefy and myself

“NERD”, a man yells at full volume down a 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 ruckus, as I become unusually absorbed in the ingredients on a packet of pasta. “NEEEEEERD”. One more attempt to get my attention, to no avail. “VRRRRRRRR” 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 supermarket 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 baited breath, as with absolute urgency he requests: “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, nickname philanthropist, 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, and works as a marketing executive in Switzerland, where he lives with his gorgeous fiancĂ© Melissa (nickname pending). Our father ‘Big balls’ (no explanation needed), known by those 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); an unfailingly tolerant chartered accountant, who has somehow evaded an egregious nickname!

And that’s us: The Hitchin clan.

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. Although, when I say ‘dad’s house’, I really mean ‘dad and Beef’s house’. 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 up mixed emotions for me. On the one hand, I am thoroughly enjoying spending more time with him, and I love the many laughs he incites. The most recent laugh spawned from dad’s determination for Beef to gain his independence, by taking his own jeans to the alterations lady to be hemmed. Walking down the driveway behind him that same afternoon, dad and I realised he had hemmed the jeans roughly twenty centimetres too short. We were all in hysterics! Though it’s not surprising; he always has been a trendsetter that Beef.

On the other hand, living at home has reminded me of the difficulty that living with a person with an intellectual disability brings. His 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 necessitates he know where I am at all times: John and I can’t leave the house without letting him know where we are going, and the exact time we will be home. My dad doesn’t even require this information! His 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 these nuisances 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 child-like innocence and genuine nature make him 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 sit in his room alone? 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 am writing this I am holding back tears, but not frustrated tears. Rather, because I feel an extraordinary sense of guilt: And that’s the most annoying emotion that being the sister of a brother with an intellectual disability brings. I feel guilty that I have my own life, my own group of friends, my relationship with John, my career, and my independence: My life. While he struggles to make even one real friend, let alone become employed, despite having so much to offer.

And 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 something 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. And I wouldn’t give that up for the world.

I guess that’s the thing about having a brother with an intellectual disability: You have to see the good side. There are certainly aspects of it that make life difficult, but there are so many more that make it remarkable. He 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.

And he has inspired me to pursue the career I have chosen. I am a doctoral student at The University of Auckland, researching the relationship between persons with intellectual disabilities and their communities. I want to break down the barriers existing in society that prevent persons with intellectual disabilities and persons without intellectual disabilities communicate effectively and without apprehension. If people just had a chance to get to know Beefy, they would fight to have him as their friend, just as I do.

I know that there are many young people, like myself, who care for family members with an intellectual or physical disability, a mental illness, a chronic or terminal illness, who are elderly, or who have a drug addiction. I wanted to write this article to let you know that you are not alone in your fears, worries, and frustrations resultant from this role as ‘carer’. While it is indeed an honour to look after our loved ones, the impact it can have on social opportunities, education, and career prospects can certainly be vexing at times. And it can be lonely when others do not understand these feelings. 

I have written this blog to open up a space for us to communicate, so please feel free to leave a comment below, or share your own stories.