When I think of all the good times in my life or the times that have made me smile the one common thing is that during these times I have always had my friends beside me.
Having a disability, the importance of friendship is a vital ingredient to living a good life and a life of purpose and meaning. Having a friend to laugh with, cry with or share thoughts with is absolutely everything in my world and my biggest asset of all.
Having a disability, the reality is we always will need help with certain things in order to function in this wide world. For my disability, this means I need someone to help me eat, drive me places, personal care and much more.
Some questions I sometimes ask myself are:
– Should I just rely on paid people to fulfil these roles?
– Is there anything wrong with asking a friend to help out?
– If a friend does help out in a non-paid capacity will asking for physical help jeopardise our friendship?
And many more questions come into play at times…
While I consider myself extremely blessed to live in a country that invests in supporting people with a disability, via paid support, nothing truly beats a friend. A friend won’t care If they are feeding you McDonald’s at midnight or if they are pulling back your hair when you spew after a big night on the town. I have always had these kinds of friends throughout my entire life and my mother always put so much effort into facilitating these friendships. Even when I was younger my mother would offer this support but also give space for the friendship to develop.
In primary school, she would do things like get me in my chair and allow my friends to go by themselves with me down the park at the end of the road. In hindsight “allowing” my friends to take on this responsibility and have our space has given me independence as a grown woman to this day. Even though I rely on an electric wheelchair and I am non-verbal, my life is in many ways independent.
Without diminishing the paid support in my life, a friend that doesn’t want any money is always better at wiping a tear away or encouraging me when times are tough. They only want the best for me. They can be whatever they want around me and I can be myself around them. We communicate in so many different ways around each other and communication flows so much better around my friends. To my friends having cerebral palsy is not a big thing and they have expectations of me as just a normal friend. I know that I contribute to the friendship as well and I feel part of the friendship. Despite the fact I have cerebral palsy friends will feed me, give me a drink, drive me places or even do personal care if required. While I physically can’t contribute to the friendships there are many things I can and do. Friendships are a two-way street.
I am so blessed to have people in my life that just do what is required.
When I look at paid support in my life the number one role of that person is to support me when required to maintain the non-paid people in my life. Whether that is with my close circle of friends. My family or even relationships in my work life. It is essential that paid workers play a part in this process.
It is essential as these are the people that will have my back more than anyone else. It is my friends that will be my voice as I am non-verbal. They will advocate for me long after a typical 9 to 5 working hours. They will spend hours on the phone to ensure I can go to a concert or sporting event in general admission thus further enhancing my engagement with my community. My friends will pick me up in the middle of the night and encourage the wildest of my dreams. They literally will take me to the other side of the world to do something dumb like base jump off a tower or even see a spice girls reunion concert.
If you are a worker out there reading this I encourage you to support friendships as your number one priority. Apart from the personal care side of support you do, I believe every single day you have the opportunity to assist a person with a disability to make and maintain friendships. Real friendships and real communities not just segregated ones with just other people with disabilities. I have many friends with disabilities (and love each and every one I have connected with) but have many more friends and connections with people that do not have disabilities. Life is great when you have a rounded balance and a wide range of friendships and community.
If you are a person with a disability reading this and developing or maintaining friendships are tough, I encourage you to get out of your comfort zone and instruct your paid support that this is now your number one goal. Start with an interest and think generic. Don’t limit yourself to just disability programs that may link you with others with disabilities and other paid support workers. This may be limiting as to how far the friendships may go. I know this is not always the case but there can be so much more on the horizon.
I encourage you so much as when you have a mate that isn’t paid to do the “disability stuff” it feels so damn good. It makes you feel as if you truly belong and really are valued despite societal perceptions or perhaps lowered expectations that may have been placed upon you.
I leave you with this:
“We ALL can have friendships. We ALL have something to offer. We ALL have someone else out there that shares an interest. Having a TRUE friend starts with linking only with ONE other person. That person can lead to two, two to four, four to eight and so on. Where this stops is then up to you and how many friends you can handle.”
So go out and form those relationships and friendships. It is possible it just takes some change in the role of paid support in your life and letting them know their number one role in their job has now changed.
About the Author:
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.