Marlena, who has Cerebral Palsy, is a well-known advocate in the disability industry and one that is paving the way for others, especially in terms of making concerts accessible for everyone. She is one busy lady, as when she’s not advocating, she’s writing books, interviewing celebrities, travelling and running her own business.
A big thanks to Marlena for such detailed and wonderful answers!
Tell us a little bit about yourself
I’m 28 years old and live on the Gold Coast. I love music and going to live gigs with my friends. I am a small business owner and also I consider myself to be Australia’s most unique journalist, as I am non-verbal and also a wheelchair user. After completion of my Bachelor in Communication (majoring in journalism and media studies) I decided to concentrate mainly on music journalism. While journalism isn’t the best financially, it has its benefits in many other ways. I have been blessed to meet some amazing people and have many money can’t buy experiences, both in Australia and overseas. Owning a business and doing a diploma of business management has given me a few ideas to make a living out of my writing though. Some of my other passions are writing, travelling, adventure sports and much more. In the last 10 years, I have been to 37 countries and I’m totally addicted.
You’re one very successful lady with a journalism degree and your own bouncy castle business. How did you get to where you are today?
To be honest I think regardless of whether a person has a disability or not we all need people to progress in life. Unfortunately for some with disabilities though, if they don’t have support their lives literally stop. I think I am lucky; I had a mum that always insisted I was supported and had normal life experiences. As mentioned I am 28 years old so over 20 years ago my mum fought for inclusive education. This is not to be brushed aside as back then it was a lot tougher then it is now. She fought many battles alone but had her eyes fixed on her belief in me. This fight continued even until the end of my formal schooling years. It wasn’t easy when people would tell her no and attempted watering down my education or providing SEP programs over the curriculum. Mum didn’t budge and I also had other Allies thank god.
In high school, this was vital to my post-school life. In year 10 my friends started to get jobs and I wanted a job as well. Mum wouldn’t give me any more pocket money if I wanted that latest pink flip phone, I had to bloody well pay for it. Sidenote: I am non-verbal but it was cool to have the old LG flip phone, but Mum wasn’t paying. I couldn’t get a job at McDonalds, so we had to be creative in me getting a job. We saw a jumping castle business at the local beach market for sale, for weeks we stalked it and saw how much it was making. The old owner was selling for a good price and we bargained him down to 50% of what he was asking for it. I used my savings from pocket money that I saved up in a Commonwealth Dollar might account. Another advocate and friend leant me the remaining $3000 needed but I had to pay it back. Burleigh bouncers has been going for 15 years now and has now provided me an outlet to sell books I have authored as well. This opportunity has helped me get where I am today and opened doors for me personally and professionally. In early days it provided income for simple teenage things like phones, concerts and cloths. As it has grown it has given me the opportunity to go to uni (without HECS debt), travel, buy my own car and even give me a chance to save a deposit for a house.
Writing was always my passion as I am judged by the final outcome and not how long it has taken me to write it. Having CP Athetosis some days it takes forever to write some things and other days it just flows. Journalism is essentially just sharing stories and content with people so I always was intending on doing something along this line when I finished school. As with everything I always was taught to plan ahead and start one step at a time. My journalism career started in high school writing for various things. When I didn’t finish school with the grades needed to go straight to university I had to take a different path. Doing TAFE gave me skills to grow my business, travel a bit (3 trips that year – Japan, Thailand and USA) and think about my future. It was the year I needed and the next year as I started my formal journalism studies I also started connecting into the music industry. Having the degree has given me validation, over people who assume I also have an intellectual disability, due to being non-verbal. It is water off a duck’s back to me but at times this assumption has been made. I learnt a lot in my degree but equally important has been the contacts I have made in the tight nit music industry. It started with simply approaching smaller bands such as Wolfmother, Ball Park Music or even Sheppard. These were a few bands that supported me in the early days and have become good friends now. Having these interviews under my belt gave me the courage to pursue larger bands and events such as the Aria Awards. This is my yearly gig now and so important for maintaining my place in the Australian music scene.
When you first started interviewing celebrities, what was their initial reaction to your disability, especially as I read you use an ABC Board and iPad to communicate with others?
I think to be honest some are perplexed and curious. I embrace this and think it is a great thing. It would be naïve of me to think that I have got all of my interviews without this happening. Equally though if I didn’t have a disability I think I would be a radio host or working for a major magazine by now. I don’t shy away from my disability and need to mention it for obvious access reasons. There have been a few times I have not been able to do the interview due to access so now I mention it. Most people I have interviewed have embraced it and given me little extra time to allow for the extra time it requires. There have been certain artists that have literally given me the entire day with them, flown me interstate so our interview is not rushed, hung out at the hotel with them in their suite or even had breakfast with them. There are many amazing stories I could share around artist being accommodating. My disability is a unique opportunity for an artist to have some fun and do something a little different in their interviews. I am blessed so many artists have now become friends and many have even literally grasped my hand to assist in my low tech communication.
Who has been your favourite person to interview and why?
Russell Brand and the Dalai Lama hands down! Throughout my short career I have interviewed some amazing people but those two have made a huge impact on me. Meeting and interviewing the holiness was a unique experience itself. For a world leader, he was so down to earth and has an amazing connection with people. Russell brand is a loving and caring character with the power to connecting with everyone in the room. I have been lucky enough to interview him twice in Brisbane. The connection between us was amazing. He just blocked out my facilitator and only talked to me during our interviews. While I typically interview musicians these guys stick out the most. Music-wise though I would probably say Ed Sheeran, Kylie Minogue, Andrea Bocelli or Robbie Williams. It is so hard to be honest to pick a few.
How did you first get involved in disability advocacy?
I think having a disability we are born into it. Advocacy is a funny word for me as not all forms of advocacy appeal to me. I firmly believe the best way to advocate when having a disability is to live and be part of the real world, not just with disability issues. Hang with me here for a minute while I explain myself without losing this audience. My mother always taught me it is my natural right to be part of whatever community I wish to be in. When I was unable to speak for myself she was my voice, but indirectly from a very young age she gave me the tools to take over the reins from a very young age. She gave me the breathing space to fail, sometimes fall (literally), cry and then, more importantly, get back up again and stand tall.
The first memory of my advocacy came through school. Staying in class when aides wanted to pull me out and go into a unit. Telling people that was not what was happening and I was staying with my friends. This was in primary school and my friends, in turn, were my advocates even though we had no idea what that word meant. This continued in high school and the older I got the more my mum supported me but more importantly allowed me to have thick skin and support myself.
Post schooling my advocacy was for my right to be supported in education and communication rights. Advocacy is always evolving and it is important not to let it consume your world or make you angry. A year and a bit ago I had major issues around my communication method and I had to walk away from the fight. I lost many friends and have been outcast by many in the non-verbal speaking community, but I have no regrets. Advocates need to stand up and often you will lose people along the way. Currently, I am limiting my advocacy to equal access in music venues and also advocacy around beach access for wheelies. We have had some major wins and now many venues are embracing change. I feel I have been part of this alongside many people across the country standing up for this as well. Nothing better than being up the front among people at concerts not stuck in some wheelie section staring at peoples bums all night telling them to sit down.
As I mentioned before, advocating for accessible concerts is a major passion of yours. For those that don’t know, can you tell us some of the really bad concerts you’ve been to and why you decided to focus on making concerts accessible?
Two stick out to me.
Firstly Pink in Sydney as I was left alone and my mate got kicked out and threatened with arrest. This was simply for standing up for my rights and not being bullied. I first saw Pink in London in 2010 and LOVED it so much. To cut a long story short I have seen her 8 times and decided to get a few shows in on her Aussie tour. I have friends all over Australia and we saw her in Melbourne the week before the Sydney thing. I saw her in general admission with 4 friends that joined me in waiting for hours for that prime spot. It was insane and Pink touched my hand and I danced with my mates and had time of my life. When we secured the Wild Heart tickets for Sydney, I couldn’t believe it. These were the ultra-exclusive tickets and only 100 released. We got them and couldn’t believe it as they sold out in literally 10 seconds. We were coming and the venue was notified, and we were told they would get back to us, they did not. When we got to the venue we were wrist-banded and didn’t have an issue until we were moving in. We were told it was a safety risk and Pinks team won’t “allow” wheelies on the floor. We knew this was false as we had positive engagement with Pink’s team the week before. So we called them out on it and refused to take cheaper seats that were being promoted as “best in the house”. They were not. Long story after much back and forth and bullying, by both the security team and even police, my mate was kicked out and threatened with arrest. They attempted to remove his phone footage of the entire encounter proving our calmness and version of events. Quick thinking and having two phones proved to be our saving grace.
Second event: Eminem in Brisbane. As we were now cautious we attempted to do EVERYTHING to limit the chances of this happening. The venue said we would have no drama and to ring when we arrived. Arriving at 12 we were 50th inline and guaranteed a barrier spot among the super fans. When entering a different way (due to stairs) we were initially held up and told to go on a platform. A ticketing officer let us in after around 300 people went through the gate and we were told to exit the venue again or go on the stage. Once again my mate was escorted out of the venue but they then let him back in as my chair was “broken”. This situation was worse due to the fact we ALL were threatened to be kicked out unless we all went up the back barrier until the “safety officer” came down. Police were involved yet again and when anyone attempted to come and talk to us they were told they were not “allowed” near us in the general section. Even after police went we were not “allowed” to have people even say hello or move past a certain line or we would be removed from the venue. Eventually 4 hours later and 3 songs in we were “allowed” to go back up the front. It wasn’t busy and were essentially only 15 metres from where we were to start with. Instead of being among people with the prime spot we paid for we were relegated and segregated in what should have been the concert of our lives.
Music is everything to me and those 2 examples are the shortened version of a really stressful couple of nights. It’s not fun being told where you can and can’t go. I wasn’t after any favours or accommodations due to my disability, just the ability to mix among peers. Many smaller venues without the budget of these big shows can do it so therefor others can as well. As a disabled woman, I should be given the respect to make my own mind up regarding my safety. I also should determine if being among people may block my view or enhance my night. Music isn’t just about getting the best view, although getting to events early gives me the ultimate night getting the “best view with the best crew”. Hanging with one or ten friends and making new friends that is guaranteed. One of my “hacks” is bringing portable phone banks and chords and lollies galore to engage with people. So this is my passion and my focus on advocacy. A majority of people do not have a problem with having a wheelchair in general settings and those that do have the option to go to the side where it is less crowded. Music doesn’t discriminate and everyone deserves music.
Who has been your favourite artist to see perform live?
Pink and Steve Wonder! I have seen Pink 8 times and absolutely loved her. The energy that she brings on stage is amazing. I saw her in London where a crane with a box came over the crowd, 30 minutes later Pink jumped out of the box to start her show with a BANG! She always gives you an experience that leaves everyone wanting more.
Stevie Wonder is a legend and I have always loved his music. Last year I was lucky enough to get to see him in London. Although he didn’t really move from his piano, his voice did all the work. For over 2 hours he blessed us with some classics hits and was worth travelling to the other side of the world for.
You’re also just released your second book, When I Grow Up, and I believe another is one the way. What inspires you to write and what do you hope people get out of your books?
There is a couple of reasons I have started to self publish books. The first being journalism is a dying career and very hard to make money from. Without sounding materialistic I have goals that require me to be earning a living. The goal with my books is to do something I enjoy and also make a living from it. While I am no JK Rowling yet, I have a business plan around having financial success from it. Writing is fun and I have a number of books I have mud mapped and hope to eventually print up for sale. Writing is something we all can do and while I LOVE with passion reviewing a writing about a gig or interviewing an artist I believe writing books gives me a unique opportunity to present disability in a mainstream or ordinary light.
My book, “When I Grow up”, attacks this from two angles and I believe is a form of advocacy. It is a very simple kids book and it shares my story from a young age. You see when I was younger I wanted to be a nurse but having CP it is pretty safe to say this never was going to happen. However, my mother wasn’t having any part of shattering my dream and she instilled in me I could be whatever I wanted to be when I grew up. So this book is simple in its message and goes through a number of professions with the tag line being “There are many things I want to be when I grow up, but at the moment I am happy being me”. Here I am revealed in my wheelchair among able-bodied friends. The brief in the back of the book explains it to the adults as such and gives them a lesson as well. My new book is another kids book with pre-prep age targeted yet again. I often have kids come up and ask the funniest questions and some are dead set brutal. Such as “why don’t you walk?” or “why is your tongue out?” Adults freak out but kids are just curious. Let’s embrace that and deal with it. My next book is called “My Chair”. Once again I will go through a number of “chairs” and reveal mine at the end. In my about the author section, I will preach to the adults about letting kids ask the questions.
My hope with my books is to attack advocacy from a different angle. Kids are the future and I have a captive audience to sell these books at my jumping castle so I will be doing a series of kids’ books. Thinking about doing disability specific books/kids’ stories as I am not too impressed with current kids’ books discussing specific disabilities. I am fortunate enough to have been successful in my first 2 books and will be reinvesting funds from them for my next two books. I also aim to have some specific books around my interviews, career thus far and a few other ideas. Ideally, I will self-publish 2 books per year for at least the next 5 years.
Besides the book, what else is on the cards for 2020? More travelling, new business adventures, etc?
I would like to say more travel but the goal for this year is to buy a house or unit. It is a very big long shot but that’s the goal. It is so tough as travel and music is addictive and having a good deposit the temptation and means are there to just duck away for a bit, but I’ll be strong. There are a few concerts I pre-paid or were given as gifts, but I’ll have to be strong not to buy more. I am blessed I can go to many for free or review for a magazine so this need will be fulfilled in one shape or another. Crossing fingers 2020 is the year I put down my deposit and do the grown up thing and buy a house.
Lastly, if there was one thing, you’d want the world to know about what it’s like to have a physical disability, what would it be?
It is what it is and it is only one part of mine and other identities. We need support otherwise our days literally stop but then again doesn’t everyone need support for things. While you can see the obvious things I need it doesn’t mean I don’t have goals, dreams and ambition to contribute. Access to me is more than a ramp and some of the most amazing things I have done have been with little access, but the willingness of people to naturally include me. Inclusion and access is a thought process more than a physical requirement. Life is good and I am blessed.