Can you pick up a pen and write your name? 

I was bemused by the question!

Well no I have Cerebral Palsy Athetosis, I responded to the lady I had only met some 15 minutes prior to this dumb question. 

We then continue with more questions that, if you took one look at me, were fairly obvious I could not achieve.

Can you put on your jumper independently?

I burst out in a fit of laughter as the questions went from dumb to dumber, she continued as not to break the script. She had a job to do and my non-compliance or responses were not swaying her from this important job.

Can you pick up the glass of water and give yourself a drink?

My advocate and friend rolled his eyes and I saw this was heading south very quickly. He blurted out, “ How about we go get one and let’s have a crack at it and while we are at it can we attempt to get her to fire twirl as well? His attempt at humour went down like a lead balloon and the next hour of this meeting was interesting, to say the least. 

A few weeks ago I was scrolling down my twitter feed and came across a government promotional video about the independent assessment they are wishing to bring in. The logic behind this is to make it fairer when distributing the funding to people with disabilities. The sceptic in me straight away went to my experience and thought there is no way this would be independent or for the benefit of the person being assessed. How can someone who has just met me decide what is or isn’t best for me based on a set of questions that have been predetermined? I thought we have moved on from focussing on what the person with a disability cannot do. 

I naïvely believed supports were now readily available to assist us with the things we can do. I believed the process was to be clear in your goals and ensure you write them into your plan, even if we are only “permitted” to submit three goals. Is it not the latest feel-good phrase “Don’t dis my ability”?  Focussing on what we may or may not be able to do (based on a person's assessment on any given day) should never play a part in determining how we are supported in what we can do. It is not fair, it is not equitable and leaves results open to bias.

I also pose the question - should I refuse to do these humiliating test where does this leave me? Will my supports be minimised? I will not be part of this humiliation that some “professional” signs off on.  I will be refusing purely based on the fact a person with cerebral palsy, like most disabilities, cannot put into one box. 

My fear is someone who assesses me may make important decisions about my welfare and level of support based on comparing me to another person with cerebral palsy. There is only one Marlena! I am unique and it is certain that no 20-minute standardised assessment test will give a fair indication of what my needs entail.

Reading other threads and social media posts around this many other important discussions were had. All came to the same conclusion that the whole notion of these assessments are wrong and it is reverting back to a medical model of care, not a social model that is working so much better. 

Parents mentioned that their child may “perform” better on the day than they typically would. Where would this leave them when that child has a meltdown the very next day? Other thoughts question the validity or experience of the assessors themselves. How does one qualify for such a position to assess our child? It's a question that I certainly would like to know the answer to. Is this something that is an added on elective on a university course, a TAFE course, a one-day intense course or is it as simple as a tick and flick document? 

If you watch the promotional video it appears that it is conducted by a medical professional in the comfort of your familiar surroundings. I am not so sure it will be as rosy as this. 

Standardised testing is wrong on so many levels as each individual has different needs based on so many contributing factors. It takes away from the focus point being about goal setting and building those supports required to make these goals become real. 

Tomorrow as sure as the sun will rise I will still wake up and have my disability. My disability will remain and no matter what test results may determine I still will not be able to pick up a glass or put on a jumper. It is what it is and I am content with my life and how I am currently supported. It is my hope alongside others that the powers that be realise yet another bit of paper or another medical appointment is not necessary or warranted to improve disability care. You cannot and will not ever standardise unique individuals.

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.