“It's not what we have in life, but whom we have in life that matters”

As a young woman with a physical disability and being non-verbal my social life, work-life and all other aspects of my life are often dependent on someone else assisting me. I require a person who is familiar with my needs and supporting me with these needs. In a nutshell, if I don't get help with the basics in life, my life stops. I am blessed despite these required supports - I have friends that are happy to support me (and my needs) and in turn, despite having a disability, I can support my friends with their needs as well. 

Friendships are a two-way street and, I believe, despite my disabilities (perceived or real), I too can contribute to the relationship.

So where does this leave us when there is a connection? Can friends become workers and can workers become friends? 

The debate has been around for a while and many people have varying thoughts about this. Whether this is a worker, people with a disability, services, families of a person with a disability and pretty much everyone else - there are many opinions. No matter what side of the argument one lies it is imperative we ALL have friendships regardless if we have a disability or not. 

Having a disability does add a dimension to how we achieve this most basic human right. Over the years I have had many people come in and out of my life, some were paid many not. People come and go but friends always seem to re-enter my life in some shape or form. Nothing beats a good friend and if you do not have a disability you wouldn't think twice if a friend did something for you. Having a disability, however, we still have to break down the perception that a person doing something for you is automatically a “Carer”. 

I hate that term, to be honest, as it is an automatic assumption our lives are filled only with paid care. I am blessed I have a solid group of friends and some of my supports are quite personal. Personal enough that I wouldn't expect anyone to do it for free but also to the point that I wouldn't want a stranger I didn't know to assist if I had the choice. Some of these supports are around personal care but others are around my work life. 

As a music journalist, I am sometimes privy to information, contacts or access at events, which require my 100% confidence in the person supporting me. I often will pay my friends to assist me in these situations as it just makes sense instead of paying someone who may not be familiar with my needs or may want to come for other reasons. 

My friends don't need training just common sense and a sense of being part of the overall picture. I can trust them not to take advantage of situations that may impact on my desire to live in the real world, not just disability environments. My friends support me to make more friends and offer me so much more then any paid support can or has done in the past. 

I also believe in this day and age of choice and control I can effectively pay friends to support me to live my life without harming our friendship. Some may argue the boundaries can be blurred and friends could take advantage of this but this has never been my experience. If the person is truly a friend and has supported me without a paycheque why can’t they remain my friend when they receive one? 

Music is a major part of my life and I need to be around people that want to be part of a show I go to, not clock watch and be waiting to get out of there as soon as the show is over. My friends and I have common interests and while I don't pay people to go to concerts with me, if I had needs above having a drink or feed (which my natural supports are happy to do) I would not have a problem paying my friends to help.

Friends don't need a set of rules to support me, unlike some situations with paid supports. I recall a situation a mate of mine had who works in the disability field. They wanted to take a friend of ours swimming with the dolphins for her birthday. A fairly simple task but if you have a disability this required a work health assessment from her “service” in order to do this if they were to support her, despite the fact their role was simply to drive her there. 

This was in direct opposition to a number of year’s prior when my friends and I went to Dreamworld. My “Support” had to return to the car for something and we were offered a good deal on a helicopter ride being the 1st flight of the day. On a whim we just did it and my friends lifted me into the chopper and it was awesome. Had the paid support been there this may have resulted in him losing his job as there was no prior approval. The difference between these two situations highlights what is possible when friends support you over that of paid supports. 

My life has been a full and enriching one and when I look at a majority of the unique and memorable things I have done it has been with non-paid people around me. 

So what determines if the boundaries are blurred or not? 

In my eyes, friends will have my back regardless of if they are getting paid or not. The money isn’t an issue and secondary to the fact of my needs being met. Sometimes, prior to current support systems in place, friends would take time off work to ensure my needs were properly supported. 

I currently self manage my supports and am happy to pay people that were friends before they were paid and will remain my friends long after it goes. To me this is the litmus test to if they are friends or workers. I have and have had workers, who will only be there for the money and that's ok as well. When they stop with the work often so does the relationship. It is unfortunate that for some with a disability there are no other relationships or friendships that can fill that void. 

To those in this position, I would say priority one is to let those in a paid role know their main task is to link with your chosen community, where these friendships may form. While other supports are essential this has to be your number one priority. It has to be more than “Community Access” where you may just be linked with others with similar disabilities. There is no such thing as “Community Access” programs for people with disabilities that are known in their communities and have solid friendships. If paid support workers are the only people in a person with a disabilities' life then this is a problem. 

Support workers come and go FRIENDS do not - even if you haven’t seen them in a while. If you are a support worker your number one priority is to understand how vital natural friendships are. THIS IS YOUR JOB, especially if you think it breaches your boundaries to be friends with the person you support. 

My friends are my safety net, my confidants, my reason for being and my entire world. If you and I don't align as friends this is ok and part of life. However, if you are paid to be in my life your number one job role is to support the many awesome friendships I have and are yet to make. Workers come and go but friends will always be there.  I love my friends!!

About the Writer: 

Marlena Katene is Australia’s most unique entertainment journalist. Having Cerebral Palsy Marlena communicates via an ABC Board and iPad. After completing her Bachelor of Communications degree Marlena has been blessed to interview a wide range of people ranging from Ed Sheeran, Robbie Williams and even the Dalia Lama. While her journalism focuses mainly on music she also has written on other issues and freelance writes for a variety of magazines. Apart from her journalism work, Marlena is an avid traveller and adventure seeker. In 2016 she became the first person in the world with Cerebral Palsy to Base jump, achieving this feat by jumping off the 421 metre KL Tower in Malaysia. Addicted to travelling she is always seeking the next adventure and place to explore.