The Dignity Project celebrates International Women’s Day 2021

To celebrate International Women’s Day, we are honoured to invite Julia Robertson as our guest on the Dignity Project blog.

Julia works as an Education Support Officer at Griffith University. She is also a Bachelor of Psychological Science graduate and Masters student, with an aim to move into the Public Health space to better help people living with brain tumour, their families and clinicians.

Julia is a tireless disability support worker and advocate.  She is the co-founder of the Brain Tumour Support Group at Cancer Council Queensland, was a Board member of the Brain Tumour Alliance Australia (3 years) and has been part of many other initiatives including: Cure Brain Cancer, Peace of Mind Foundation, Brain Foundation, Synapse, Unity in Hope amongst others. 

Last year Julia was awarded the prestigious Aspire Award for her tireless work supporting people with disability and specifically those with brain tumour or brain injury. She has also been recognised with a Griffith Futures Scholarship, Local Legend Award Nomination and Pride of Australia Medal (Courage Nominee – 2012).

Julia is currently researching telehealth psychological support intervention for people with primary brain tumour and their family members.

How has your lived experience influenced your journey and career?  

I was diagnosed with a brain tumour in 2003 and had life saving surgery to remove it in 2011. Throughout this rollercoaster of symptoms and deficits, I have become keenly aware of the gaps in our health system and the attitudes of some clinicians and the public towards people living with brain tumour and traumatic brain injury. I moved into this field as I wanted to help people who were going through the same or similar experiences that I had gone through. Being able to talk to someone with lived experience is easier, because you do not need to explain everything, they just ‘get it’.

You are well known for your volunteer work and community advocacy. Can you tell us about your work in this area and how others can become involved?

I have been volunteering in several different charities since the age of 12. My focus has been brain tumour and brain injury since my diagnosis in 2003 – however, I was heavily involved with The Cancer Council (Queensland) previously, as they had been very supportive of my family when I was growing up and had both parents diagnosed with cancer.

If you are interested in volunteering, choose something you are passionate about, locate your local charity or service provider and see if there is anything you can do to help. There are so many ways to assist. Anything from participating in fundraising through fun runs, to getting involved in committees. Use the strengths you have to support others however you can. Instead of reposting the memes on social media about cancer, mental health etc, get out there and do something meaningful.

You have conducted research and published several papers on quarantining, supportive/psychological care and telehealth platforms during COVID-19. How has the coronavirus pandemic in Australia, and particularly in South East Queensland, impacted access to critical support services, mental health and dignity of people with disabilities.

COVID-19 has had a large impact on access to services. Mental health services are stretched very thinly, as so many people are experiencing distress. Many of our brain tumour support groups have moved to online video conferencing to maintain support sessions however, due to the nature of brain tumour and its cognitive impacts, many are not capable of logging in. As an example, our Brisbane support group was between 15 and 30 people every month when we were still face to face. Since COVID and moving to online meetings, we are lucky so see 10 people log in. This means that since March 2020, many people in our group alone have been without support.

Those of us with hearing impairments, who have had telehealth sessions via phone have struggled and, in some cases, given up on seeking support and healthcare. Some people who are immune suppressed, have avoided medical appointments and treatments in hospitals due to their fear of contracting COVID. I personally had a phone appointment with a neurosurgeon – which was not at all helpful, as he was talking about things on a brain scan and I could not see the scan to understand what he was talking about.

It can be very difficult for people with disability to access services during COVID as they must either disclose their disability in order to receive care in an appropriate manner, or they are unable to access those services. In some cases, people who have avoided going to ED for serious health conditions due to their concern about contracting COVID, have been chastised for leaving things so late and not coming in earlier.

In response to how well Australia and also Queensland has managed the pandemic thus far, do you feel this has allayed many people’s fears and anxiety, compared to those with disability and reduced capacity internationally, where the services, people’s rights and as a result – dignity has been eroded.

Australia and Queensland’s early response has been very effective in managing the pandemic thus far. For many, this has not only allayed many peoples fears about contracting COVID, but has swung the other way, to the point where some are complacent about maintaining social distancing and other precautions, such as mask wearing.

For people in the disability community, it has become much more difficult and, in many cases, isolating. When people are panic buying essential items including toilet paper?!?! People with mobility or transport challenges are unable to acquire the item they need. Some supermarkets made provisions for those who were immune suppressed, aged, or living with a disability, but it did not solve the issues with accessing those essential items. They end up having to reach out to friends and neighbours to assist them. It can be very challenging to reach out and ask for that help if a person has been able to maintain their independence up until the pandemic.

Internationally, those fears and concerns that people in Australia are experiencing are exponentially increased. There is a gentleman from Italy who is here on a visitor’s Visa – he is immune compromised, and the Australian Government has extended his visa for 3 months, but then he must leave the country. To return home, there are 4 lay overs in other COVID ravaged countries, before he reaches his home in Italy, where the pandemic is still raging having entered their third wave of the pandemic.

What does dignity mean to you?

To me, dignity means having a voice in my life. Being involved in my care, social inclusion and being able to maintain my privacy. I should not have to disclose my variety of disabilities to access services, education, employment, transport, and medical treatment – if they are not going to put anyone, including myself, at risk.

Do you have a specific incident relating to dignity that you would like to share, or feel others would resonate with and learn from?

In 2019, I found myself unexpectedly admitted to ICU. As I had been in surgery leading up to the admission, my glasses and hearing aides were not on. While the medical team were doing their assessments and neurological checks, I could not hear them without my hearing aids and could not lip read without my glasses. Consequently, my GCS was quite low. A few days later, my husband mentioned to one of the nurses that without my glasses and/or my hearing aides I would not only be unable to respond to their questions and directions, but I would also most likely be quite distressed at being so isolated from the world around me.  

Due to my disabilities, I have also had issues with public transport. I can often not hear announcements on public transport or train stations, I cannot see bus numbers until they are almost on top of me, and if I do not use the TransLink app to use live tracking for the service I am on, I miss stops which usually results in long walks to get to my destination. During daylight hours on my usual routes, I have visual references to let me know what part of the journey I am at, but at night those references are not visible – so I have to rely on the app or ask the driver to let me know when my stop is coming up.

How do you work to advocate for dignity for yourself and others, particularly through your employment and community work?

Through my work at Griffith and my research, I advocate for dignity through sharing my lived experience and doing my best to ensure that universal design is applied to make things accessible for everyone, not just people living with disability. I have been a guest lecturer in a paramedicine course and stressed the importance of asking patients what their normal is and providing any aids they may require for following instructions or answering vital questions. Through my research, I have been able to provide that lived experience to better direct the scope of the research and identify where the research may be trying to cover an issue which is not experienced by that community or alternately, point out specific deficits which need more exploration – and to have interventions developed and applied.

As part of my community work, I have engaged with different medical professionals to come and speak with our brain tumour patients to explain more thoroughly the things that are available to them, treatment options, and the position that the clinicians are coming from. I have also been engaged with some science communicators from around the globe to provide a plain language summary of academic papers relating to brain tumour, so that they are easily understood and the person then has the option to read the full paper, if they feel so inclined.   

What work needs to be done to ensure everybody is treated equally and equitably in all aspects of life.

There is so much work that needs to be done around assumptions. Even within the disability community, people make assumptions that the experience of one person or their level of disability, is the same as their own. We are all different, disabled or ‘normal’, we all carry our own wounds and needs. For everybody to be treated equally and equitably in education, employment, hiring practises, education/workplace adjustments – assumptions about ability need to be adjusted, and the person needs to be asked what their needs or preference are, without judgement. If universal design is employed, it makes many things easier and the need for disclosure and potentially poor treatment less likely. I am not sure there is a magic or quick fix for these issues, it is a process which will take time. The Gold Coast University Hospital has a beautiful video which would be a fabulous start to changing people’s assumptions about other people – it is a part of their orientation program.

 

Do you have any advice you would like to share with our readers?

Self-advocacy is very important in maintaining dignity. Being independent as much as you can be and finding work arounds for whatever issues you have; can increase you sense of self-worth and allow you to help others to understand what the issues are – and your solutions for them. I use a transcription app for all my doctor’s appointments where they are wearing masks, I use it for ambulance and ED staff, as well as for online conferences and meetings which do not have captioning. In the case of conferences without captioning, I send hosts an email suggesting in future, they provide captioning and provide a list of suggestions on ways to achieve that. Most respond quite positively – as you have not only highlighted a gap but given them a potential solution.

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