Community Corner

This blog was first published by The Dignity Project in August 2021.

Can you tell us about your lived experience with disability?

I was born moderately-severely Deaf – and so I have lived with hearing loss my whole life. I grew up wearing hearing aids and attending a mainstream school with other Deaf children, as well as attending Deaf clubs. So, I have had exposure to British Sign Language from a young age, although I am not (yet) fluent in the language. Whilst my brother is Deaf too, my family are mainly hearing, and so I grew up with English as my native language – with a fair amount of lipreading too! When I was 25 years old, I went for the cochlear implant, and it literally changed my life. I hear better with the cochlear implant than I ever did growing up with hearing aids. There were things I struggled to do with hearing aids that I can now do with my cochlear implant – such as talking on the telephone.

You work as a communications and marketing officer at NRCPD in the United Kingdom. Can you tell us about your work in this area?

Yes, that’s correct. I’ve worked for NRCPD for 2 years as their Communications and Marketing Officer. They are the national regulator of language service professionals working with Deaf and deafblind people. I’m responsible for communicating to our stakeholders via our owned channels and for our engagement with stakeholders via social media and our outreach events.

Working in the United Kingdom, which has been hit hard during the COVID-19 Pandemic, how have you found communication in a time when wearing masks has been essential and mandated.

I’m not going to lie; it has been tough. I’m completely fine with wearing masks and others wearing masks too – as it’s important to keep ourselves safe, but it does come with the obvious challenges for those with hearing loss. It’s been mostly fine, as we’ve now adapted and people are more aware of what they can do to communicate, instead of removing their masks, such as writing things down or using sign language. Every now and then, I come across someone – who upon my repeatedly explaining that I am Deaf – continues speaking with their mask on, and not doing anything different to improve the communication. These kinds of situations are particularly frustrating.

Have you been working from home? How have innovations in technology helped you in your work and day to day activities during this period?

Yes, myself and my colleagues have mostly been working from home for the last 18 or so months. Initially, we were having team meetings on Zoom, which didn’t come with captions, so we moved over to Microsoft Teams, which do have automatic captions. It’s been great having meetings over Teams with the captions. Admittedly, the captions are not perfect, but they help a great deal. For big meetings such as board meetings, I work with NRCPD registered speech to text reporters – who are qualified palantypists, and they are absolutely fantastic, and the captioning is of such a high standard.

You recently attended a close friend’s wedding and were surprised to find they had arranged a ‘speech to captions’ screen, so that you could follow along with the wedding festivities and speeches. Can you tell us about this, and how it made you feel as a person who is valued?

Well, it was a complete surprise! I just sat down at the table where my place card was, ready for the wedding meal and speeches – and I found that I was sitting opposite the bride, Sian. I also noticed a screen – not too far away from me – which I assumed was going to show a montage of photographs of the bride and groom growing up. Sian suddenly said to me: ‘Laura, can you see the screen?’ and I said: ‘yes, why?’, and that was when Sian told me it was a captions screen just for me. I was suddenly overcome with emotion, which was gratitude, and then burst into tears! Which then made the bride cry too.

People thinking of my access, especially outside of work, is quite rare. At work, I have the access I need to do my job, but outside of work, understanding what’s going on and being a part of it all, is rare. I was overcome with emotion at the fact that my friend thought of my access to the speeches without my even asking for it – not that I would have asked for it, because I just accept that’s how it is. It was a simple, yet brilliant thing that she did for me, that I will never forget.

What does dignity mean to you?

Ooh, that’s a hard question, but a very good one. Dignity to me in the sense of disability, means having your disability accepted and considered by others in a way where you are equal to those without disabilities. As in – your access and participation is equal.

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

I’ve found a lot of society, in general, to not be Deaf aware. Phones are heavily preferred when it comes to consultations and appointments – and quite often, I have a bit of a fight trying to get people and to communicate with me over text or email instead, which I cannot understand – as nearly everyone uses email, and this is nearly always an option. I don’t understand businesses’ need to only communicate with people over the phone. I find it very frustrating as a deaf person.

How do you work to advocate for dignity for yourself and others?

I always ensure that people are aware of my access needs with communication, and I try to raise deaf awareness, especially on social media, where I have had the pleasure of getting to know lots of other fantastic Deaf people.

What work still needs to be done to ensure that everybody is treated equally and equitably in all aspects of life in the United Kingdom?

I can only really speak as a Deaf person with lived experience of deafness, but the UK has a long way to go to ensure that Deaf people are treated equally. Deaf people, myself included, struggle with healthcare. Audiology departments in the UK ring Deaf people to arrange appointments, despite this being a completely inaccessible way to communicate with Deaf people and quite ironic at that too. People could wear transparent masks to aid lipreading and be open to ways of communicating that don’t involve the phone.

Back to the beginning.

My first brain injury was sustained at the tender age of 5 years. I was too young to remember how things were before the injury, so I don't really know how it affected me in terms of cognition or function. I was hit by a car doing approximately 80ks an hour. Those who witnessed it said that I was thrown over the car rather than being pulled under it. Apart from my brain injury, I fractured my spine and lost all the skin on my back from my backside to the base of my neck. Ended my dancing career.

At 29 years of age, I was diagnosed with a brain tumour. Due to the location and level of risk associated with surgery, I was not able to find a neurosurgeon willing to remove it or even attempt a biopsy. The growth of the tumour and the intermittent blocking of the flow of fluid through my brain meant that one half of my brain had moved around. As this happened, my memory started to decline, I had seizures and became progressively more disabled until I was completely dependent on my husband. Eight (8) years later, at age 37, I was able to have the surgery interstate. I had a massive intraoperative haemorrhage and lost my memory.

It isn't all bad though. I have a much better understanding of what life can be like for other people living with a disability. I am more confident than I ever remember being in Life 1.0. I do my best to find ways around the things I cannot do or struggle with. I use routine, alarms, a shared (with my husband) electronic calendar, and reminders to help with my memory problems. I had to relearn how to learn, which launched me back into study, which has helped me to improve my short-term memory and consciously make memories.

My long-term memory has some patches filled in with stories other people have told me about my past. I must trust what they tell me is true – because I have no way to check, no basis for comparison. I remember and can recite a poem I learnt when I was 7 years old, but I have no memory of the first time I held any of our children. We have spent a fortune on physiotherapy, but it is worth it to be able to hold my new granddaughter without hesitation or fear that I will drop her.

I still have seizures. They often leave me weaker on the left for a few days. The seizures impact my cognition and memory for up to a week. They leave me with the fear that I might have one while I am holding my granddaughter. However, I cannot and will not allow my life to be ruled by fear. I still hold her, but I am careful about where I am, when I do it, and make sure I am in the line of sight of anyone who might be able to take her from me if that should happen. I try to be aware of the possibilities – but not afraid.

Dignity for me is about being treated with respect. I know what my limits are, and I try to work within them and push them a little further. If you tell me I cannot do something, I will do my best to show you I can, or at least will give it a decent shot.

My mother used to proudly tell everyone who would listen that my first full sentence was 'Do by self!', not much has changed. I am very attached to my independence such as it is. I struggle to ask for help and sometimes even to be able to identify when I might need help. I am a terrible patient and have received disapproving looks and lectures from my Doctor's, specialists and on at least one occasion, from paramedics.

During the pandemic, I have struggled with feelings of isolation due to my inability to hear during online conferences and meetings, if I cannot see the speaker and there is no captioning. I have emailed each and every one of those organisers and let them know that the content is not accessible and how they can fix it, providing suggestions as to different services they can use. Masks have also made it a lonely world out there. I have a note app on my phone that I typed up my coffee order on, a note for presenters at live conferences asking if it is okay to use my transcription app to record and 'read' their presentation. I have asked people in shops to lower their masks so I can lip read and I use my transcription app for medical appointments.

If I can find a way to adapt I will!

This blog was first published by The Dignity Project in June 2021.

The Dignity Project team spoke to some of our members about their own experiences with Job Access, including their stories and advice, this week we are joined by Lindsay Nott – MyC5Life, and Dr Scott Hollier – Chief Executive Officer & Co-founder at Centre for Accessibility Australia.

Dr Scott Hollier

Getting a foot in the door when it comes to employment is one of the hardest things I’ve tried to do as a legally blind person, but I’d like to encourage others that it can work out in the end.

My first job interview was for an entry-level IT position at a state government department – and it seemed to go well, so I was surprised when I didn’t get the job. Perhaps it was arrogance on my part, being 21 and trying to prove myself, but I decided to try and find out why and took up the offer of the department to call them for feedback. I was told that the other person had more experience, which at the time surprised me as there was no particular experience required for that position.

My second interview was similar to the first, except that I noticed a definite point at which the atmosphere in the interview changed – right when I mentioned my eyesight. It was for a large multinational firm, who were advertising an IT job with a mentoring component, which sounded ideal, and the interview was going really well. When there was an opening, I mentioned that while I didn’t anticipate it would be a problem, I just wanted to briefly explain my eye condition – keeping it positive. It’s also worth bearing in mind, that at this point there would have been no obvious way to tell I was vision impaired. Once I’d explained how it worked, a frost descended on the room. After a few more questions one of the panellists said, ‘So, I guess you can’t drive, huh?’ to which I answered, ‘No.’ There was no requirement for driving in the selection criteria, but after some mad scribbling of notes by the panel, they thanked me for my time. The rejection letter turned up in the mail sometime later.

After six months of the same pattern of making the interview process, but missing out on the position, I decided that what I really wanted to do was work as a helpdesk person and I sent a letter to every Internet Service Provider (ISP) in Western Australia, about 50 in all. After a week I started to receive phone calls but unfortunately a fair few of the jobs required a car. Eventually, though, I was employed by an internet provider.

Despite the undignified experiences leading up to this point, there were two factors that made getting this job possible. Firstly, by writing to every ISP in the state, I was taking the initiative – which helped with my self-esteem no end. Secondly, I was confident that I could do the job, and that helped immensely in the interview process. When I went in for the interview, the CEO explained that quite often there was a need to travel, and asked, like the others, whether I had a license. This time I was prepared and answered, ‘No, but if I need to get anywhere, I will pay for the taxi at my own expense.’ Not only did I get the job, but in the two years I worked there, I never needed to go anywhere. Sometimes employment is as much about marketing yourself, as it is about job.

Once I had experience from my first job, opportunities to grow throughout my career have kept appearing. It hasn’t been a smooth road, but with perseverance, it has come together. I have not used the Job Access Network (JAN) very often in my career and do not use it presently. My first experience of JAN was when I worked in Sydney for two years and was provided assistance by way of a desktop screen magnifier. This assistive technology cost many thousands of dollars, and Job Access helped support it. It’s good that the service is there, but the process was very complicated, and I suspect the cost of the products had been inflated, and were even more expensive than they should have been, because the supplier knew Job Access would pay for it.

Now as a CEO of a not-for-profit myself, I often reflect back in time, especially as the unemployment rate for people with disability has barely changed since the 1990s when I went looking for my first job. Encouragingly though, attitudes are changing – there’s more opportunities than ever before to make work accessible, and the pursuit of education can make so many employment dreams come true – eventually! It’s been my observation that most of the barriers to employment are brought into the room before the person with disability even gets there, so I’d encourage potential employers and potential employees to consider what those barriers are, so that capable and dedicated people with disability can get to work with the dignity they deserve.

Lindsay Nott – MyC5Life

Independence is happiness! I love technology and being gainfully employed and am open to hearing about ways different advancements can be used to my benefit and to make my job easier and more accessible. Technology is moving at a fast pace, and there are technologies available now, that were not around when I sustained my injury, which have helped me to become increasingly independent in the workplace.

I have been employed most of my life. Presently, I work in an administration role for LifeTec in Brisbane, which is a role I enjoy. My employer has been very supportive, and I work in an environment which is inclusive and accessible. I had the assistance from an Occupational Therapist (OT) and Job Access upon commencement of the role and was provided with suitable accessible and adaptive technologies that aid my work processes.

Whilst Job Access does not support the funding for items such as computers, mobile phones, watches etc., they will assist with funding (either partly subsidised or outright) for assessable/adaptive equipment outside what an employer would be expected to provide. Thus, my employer provided my basic workstation set up, including a desktop computer, keyboard, mouse and landline telephone, whilst Job Access has supported me with funding for items such as an adjustable desk that can be raised or lowered, a wireless headset, document holder, flip chart and Dragon speech recognition software.

Whilst I do not like a lot of tech and prefer to keep things simple, I make great use of the wireless headset, which I use to make and receive business calls and for online team meetings. In the case of online meetings, as our meeting room is restricted for space, I am able to participate using Microsoft Teams, and remain at my desk, where using the wireless headset, I participate in meetings with my colleagues without the need for being physically present in the meeting room – which is beneficial.

Overall Job Access have been an incredible support to me. My overall experience was smooth and successful, due to the valuable assistance from my OT, who was familiar with the process, protocols and supporting documents required. I also worked with my Spinal Life clinicians, who assisted by writing supporting documentation for my application. I have made several applications for new tools over the years but was only visited in the workplace by an independent assessor upon the first application. It seems that once you have been accurately and fairly assessed and the right paperwork is filed away in the Job Access system, further requests are streamlined, without the need repeat reporting and assessment.

For more information, contact the Job Access Network:

Website: https://www.jobaccess.gov.au¹

Online Enquiry Form: https://www.jobaccess.gov.au/contacts/online-enquiry-form

Phone: 1800 464 800

TTY: 1800 555 677 (Then ask for 1800 464 800)

JobAccess is ‘the national hub for workplace and employment information for people with disability, employers and service providers. Created by the Australian Government, it brings together the information and resources that can ‘drive disability employment’’¹.

With one in five Australians now living with disability and only 53% of those participating in the workforce, it is ‘a lack of awareness, exposure and understanding [that] can cause people with disability to be overlooked for employment opportunities’¹. Thus, the primary function of JobAccess is to bridge this divide, by supporting both employees and employers to ensure the skills and talents of people with disability is not overlooked.

JobAccess aims to foster employment opportunities by building capacity. They also provide an employer engagement service through a National Disability Recruitment Coordinator (NDRC), provide financial support for workplace modifications through the Employment Assistance Fund (EAF), offer a complaints and referral service, and National Disability Abuse and Neglect Hotline.

The Dignity Project team spoke to some of our members about their own experiences with Job Access, including their stories and advice, which will be shared over three weeks (Part A, B & C).

Dr Gary Allen – Chief Executive Officer | Enabled.VIP

I have two very positive experiences with the Job Access Network (JAN). Both times I was able to get essential gear that made a substantial difference to my work and my ability to make a significant contribution in my workplace. I think there were a few reasons they were successful for me and dealing with the challenges my disability brings:

1. Know what equipment or support you need, including any customisations you need. If you have a condition that is progressive, can you future proof it?
2. Have a supervisor who is excited by your contribution and maintaining your contribution.
3. Spend the time with your assigned disability officer, so they understand what you need, the contribution you make at work and what the gear/service will enable you to do/keep doing your work.
4. Replicate 2 and 3 with your assigned JAN Assessor.
5. Be prepared for some ongoing email/phone dialogue during the review and implementation phases.
6. After implementation, send a photo to the HR Officer and JAN Assessor of you using the kit with a very positive note – so they are allies for the future.
7. Through it all, be positive and upbeat. Be firm about your needs, but not combative.
   
   

Find out more about Enabled.VIP and the great work Gary does to support people with disability in employment and entrepreneurship:.

Jo Kek-Pamenter – Research Assistant | The Hopkins Centre

Community Hub Manger – The Dignity Project

I lost part of my hearing aged 16 and entered the workforce several years later after finishing my schooling. Support in the workplace was not something discussed early in my career, and I just made do as best I could, given what support, compassion and understanding was offered to me in-house. I first learned about JobAccess upon commencing employment at Griffith University (a proud, inclusive, equal opportunity employer (EEO)) when my manager asked if there was anything she could do to support me in my role – through workplace modifications and adjustments – or in terms of accessible/adaptive equipment.

With her support, I applied to JobAccess through the EAF for the purchase of Noise Cancelling Headphones to assist my ability to hear better during online team meetings (during COVID-19) and other media-based tasks. The application process was very straight forward, involving me obtaining a quote for the headphones, having my manager sign forms, which were submitted with a letter from my audiologist and copy of my audiology report. The application was approved quickly, and I received the equipment soon after.

More recently, as my role and responsibilities grew, I applied for further supports by way of adaptive equipment. I found this process to be immensely different to the first time around. There was a lot of toing and froing between multiple parties (by telephone – despite the fact I am profoundly hearing impaired 😟), filling out and submitting copious amounts of paperwork and independent reports, culminating after several months of negotiation in a visit to my place of work (remote office) by an independent assessor.

I found this process extremely exhausting, upsetting and at times degrading. The independent assessor, whilst at my home, did not at any time observe or view my work or current setup, tools or equipment – in-fact, he did not enter my office (even though I asked him too), and instead sat in my kitchen and told me why my application would not be supported (assuming he decided this before his visit, as he was well prepared ahead of time). He did not speak to my manager or supervisors – and whilst I investigated all possible options, my claim for further supports was unfortunately declined, and remains so, despite exploring other alternatives.

My experience in this regard, was with a feeling that whilst JobAccess possibly started with good intentions, the system now seems to be working against PwD – not for them. Is this a capital savings measure versus the intention to have PwD participating fully in the workforce? It would seem to me that it is a far better option (and cheaper for the Australian taxpayer) to have PwD participating to their full capacity in the workforce and contributing to the economy, in preference to having the same people – who WANT to work – on unemployment benefits and not functioning to their full potential. This would potentially add to the Governments woes (and pocket), when the same people draw upon NDIS when their physical and mental health starts to decline, due to feelings of worthlessness, depression and anxiety.

In the research for this blog, I have spent time talking to many others who have JobAccess experience. I also waited to go through the whole process myself before I decided the time was right to publish this information. I have spoken to people who received excellent supports, and others who have not (sadly… this was the majority). It has often been the case that people with the same disability and same requirements – and even working in the same organisation and department received support, but others not. In some cases, individuals are offered beneficial high-level support and others only basic supports, some no support at all. In some cases, JobAccess passed the buck back to the employer and said it was their responsibility. Ultimately, it comes down to who your JAN co-ordinator and Independent Assessor is. Are they passionate about supporting PwD or are they focused more on cost cutting and the bottom line?

My advice to others, before navigating this tedious process, is to ensure you pre-explore all options with the assistance of a qualified and helpful Occupational Therapist or Disability/Employment support person in conjunction with your workplace manager prior to any application. Explore what types of supports you require to function to full capacity in your role, obtain quotes, reports from your doctors/therapists and any supporting evidence that can enhance your application and give you a better chance of success. Once the process has started, it is important to establish and maintain a good rapport with your JAN Co-ordinator and Assessor… Then cross your fingers. Good luck!

Have an experience you would like to share… We’d love to hear from you! Participate in the current Have Your Say Forum on Job Access, or write to us on the Community Hub comments section, on our Instagram page or via email: dignityproject@griffith.edu.au

For more information, contact the JobAccess Network:

Website: https://www.jobaccess.gov.au¹

Online Enquiry Form: https://www.jobaccess.gov.au/contacts/online-enquiry-form

Phone: 1800 464 800

TTY: 1800 555 677 (Then ask for 1800 464 800)

This blog was first published by The Dignity Project on Mother's Day 2021.

With Mother’s Day upon us, this week’s blog is in honour of all the “mothers”, guardians and supporters. Our team has shared some of their experiences with mothers or motherhood and how to preserve and harness children’s inclusive nature.

Jo Kek-Pamenter

The first person I naturally wanted to speak to in writing this blog was my own mum, Judy – who, as the mother of three children (two with hearing impairments) she has plenty of lived experience. Raising children in the 1970’s and 80’s was a very different time to now, technology and societies’ attitudes towards inclusiveness were still developing and being shaped over time to what they are today – however, I always remember my mum (and dad – who is European) as being inclusive and teaching us as children to be accepting of all people. I recall my mum being friends with a person with disability who used to sell tickets for various charities in the main street named Cyril. We were very fond of visiting Cyril – he was a lovely kind man and very popular in the Dubbo community.

My brother lost his hearing age 4, and me age 16 – and in the same way my mum interacted with Cyril, it was her desire that she would always support us as best she could, but not through special treatment. Mum did not send us toWesthaven, the local “special” school. It was her desire to encourage us to be part of the community. Mum never saw being hearing impaired as anything to worry about – we just needed a little extra support or consideration with communication, which we always received. We excelled at school, our chosen sports, hobby groups, and had many friends – and in turn, we have become confident, independent, inclusive individuals.

However, in having such an idyllic and accepting childhood in a tight-knit and friendly country community, I was not prepared for being treated as ‘different’, which is something I experienced a lot once I moved away. My mum helped to foster an inclusive mindset about the people I interact with, but also about how to think about myself. It has been disheartening to encounter people who do not share my mindset along my journey. I am looking forward to a time in the future, when the world will naturally be more inclusive in providing a range of access and support that is normalised across society. Until then, it is my mission to speak up and disrupt. To demand inclusive environments and products that everyone can access, and I can thank my mum for helping me get me to where I am today.

Kelsey Chapman

When my daughter was 4, we ran into two of her day-care mates at the playground. She recognised her friends right away and ran over to one of them, saying hello and pulling them off for a play. She ignored the other child. Mortified, I called her back to ask her why she hadn't said hello to the other child. "Well mum", she said with an attitude well beyond her years, "that kid can't talk. They won't know what I am saying anyways". This other child had a disability- visible and hidden, but she knew about them from her interactions in childcare. It was in this moment, that I realised I had failed.

You see, our children are born with the ability to accept others as they are. They are not born with pre-conceived notions or prejudices or even the language of difference. This is what we as parents, guardians and community members instil in them and show them.

We had thought teaching acceptance and loving all people was enough. I wish I knew then what I know now. It is not enough. In order to be truly inclusive, we needed to nurture that intuitive acceptance more in our child. We needed to be more deliberate in exposing her to a diverse range of people, cultures, and experiences. We needed more books and toys in our home that represented people different to her and her brothers. We needed to choose child-care centres and schools that were more diverse and welcoming.

I felt that I had failed. But it is never too late. It isn't something we are getting right all the time, but I am so grateful to my colleagues and friends for continuing to educate me, foster my intuition and knowledge, and support me in helping to educate the next generation.

Justin Pamenter & Rachael Webster

Our understanding of disability comes from education, experience, and empathy. As an educator – of importance is being empathetic to other people’s needs… “I can see what you need, I have an understanding of disability, and I know what you need to help you function to the fullest of your ability”.

All teachers, at the start of semester, gets a list of students enrolled. That list will outline who has disability/impairment or any other needs – so when the teacher is preparing to deliver the course, they can make sure that they use their network to ensure the student gets the support they need from the very first day of learning.

In contrast, it is also an educator’s role, particularly an early educator, to teach this to others – so being empathetic and an inclusive becomes natural behaviour. As an example, if you are taught (ideally from a young age) to fully understand and consider a range of disability and impairment, and are genuine and empathetic about supporting everyone’s needs, then you know how to work to overcome any inherent challenges, and everyone’s needs would be naturally considered and catered for, creating a more inclusive world.

Angel Dixon

Seven months ago, I had a baby. It’s my understanding that every new parent goes through a period of nesting, but as a person with disability there was an extra layer of planning that needed to happen even before I fell pregnant. Doctors were consulted, precautions taken, adjustments made. Then there were the practicalities of preparing for bub’s arrival; my mobility, endurance and comfort were taken into consideration when purchasing products, I practiced putting the car capsule in the car and taking it out again, then putting it on and off the pram – it was a whole big thing.

Part of my personal preparation was also seeking consultation from other parents with similar impairments to myself on their experiences and how they navigated, not only the physical side of parenting, but also the (what I thought would be the inevitable) questions about disability that would come. What I discovered was that not one parent had ever needed to have a conversation with their children about disability. There had been some questions directed to their children in the schoolyard and on playdates, which were simply explained and accepted and that was it – because as it turns out (surprise, surprise), when children have the opportunity to experience people with disability, they don’t think too much about it and once they understand impairment and disability, it informs their behaviour for the rest of their lives.

This is not just true for children of people with disability, it is the crux of co-design and inclusion itself. When environments and systems remove the barriers that divide us and attitudes change, when we all have the opportunity to experience each other and share in experiences together, exclusion will be a distant but important memory.

How to:

• Use every experience as a teaching opportunity
• Destigmatise disability by reading inclusive and diverse storybooks (over those with non-disabled perspectives or damaging tropes)
• Have relaxed, open and honest conversations about disability
• Teach understanding of the diversity of impairment (visible/invisible) and acceptance (not just awareness) using experiences or themes children already understand
• Teach your child about discrimination and human rights
• Teach etiquette and boundaries
• Use neutral language (where possible)
• Avoid using words like “inspiring” or “amazing” to describe a person with disability, unless they do something truly amazing
• Foster an understanding of peer pressure and self-acceptance
• Encourage inclusive and diverse groups (school, sport, social, friendship groups)
• Modelling of appropriate behaviour – Lead from the front and by example (examine your own behaviour)
• Avoid using pejoratives that derive from medical terminology e.g. “lame”, “retarded” etc.

This blog was first published by The Dignity Project in April 2021.

My name is Lindsay Nott, I was born and raised in Brisbane, Australia, which is still home today. I obtained a spinal cord injury a number of years ago which sees me get around on four wheels instead of two legs! My injury hasn’t stopped me from making the most out of this beautiful life. I’d call myself an explorer, because I love travelling and new adventures!

My journey began on the last day of grade 12, at the age of 17 when I went for a celebratory swim at Southbank, Brisbane and broke my neck at vertebrae C5. Since my accident I have learnt so much, mostly through experience, trying new things and keeping an open mind. I see my journey as being an adventure, and a lot of this has come about due to my positive mindset and willingness to explore the many opportunities available – to make my life easier and more enjoyable – given the circumstances.

The rapid progression of technology and equity and diversity policies adopted by the government and many organisations throughout not just Australia, but the world, have seen my life enhanced significantly. An event that had a profound impact on me, was a few years ago now, during an amazing holiday to New York. At this time, it was suggested by family and peers, that I use my adventures and explorations as a way to support others on a similar journey – through the creation of a blog-based platform – and so my website http://myc5life.com was born.

I had many blog ideas in mind based on my lived-experiences and was soon introduced to a professional who helped me establish and realise my website goals. After just one year, the site became increasingly popular, with many subscribers and followers, and this led to being approached for more speaking engagements and other opportunities for collaboration, including with The Hopkins Centre and HabITec. I have participated in public speaking at universities, conferences, fundraisers, and within health care settings for over 25 years, however since the launch of the website, I have had more opportunities in this area. Additionally, I also work part-time, travel, attend the gym and volunteer as a peer support mentor for the newly injured and their families.

ENHANCING MY LIFE THROUGH TECHNOLOGY

Independence is happiness! I love technology and am open to hearing about ways different advancements can be used or co-designed to my benefit. Technology is moving at a fast pace, and there are technologies available now, that were not around when I sustained my injury, which have helped me to become increasingly independent.

Whilst I do not like a lot of tech and prefer to keep things simple, my favourite platform by far is Apple. Apple is an all-in-one system with state-of-the-art accessibility features that reduce the need for add-ons such as third-party devices or applications. Apple devices have many disability features that can be used for those with reduced capacity/mobility. The ways these tools are used is extensive and depends on the user and their individual needs. Personally, I use an Apple Watch, iPhone, iPad and iMac desktop computer. These connect to each other seamlessly and act as my ‘mission control’ – allowing me independent access to my devices, using a typing splint and hands-free – to communicate, conduct my work, manage my day, and enhance my safety, health, fitness and entertainment.

I make use of basic commands such as the Voice Control, Dictation and Siri – a combination which enables me to navigate my devices using my voice to interact with various apps. I pair my devices with a GoPro, and combined with the mobility features, can control my devices, as well as write and edit messages, use social media, make business, social and emergency calls, or video calls using FaceTime. Depending on motor limitations of the user, there are an array of accessibility options that are unmatched by PC devices at this point. There is also the new Eyegaze feature, which I have not yet tried, but hear it is a game changer for those who have limited or no use of their hands. Find out more here: https://www.apple.com/au/accessibility/mobility/

EMPLOYMENT

I have been gainfully employed most of my life. Presently I work in an administration role for LifeTec in Brisbane, which is a role I enjoy. My employer has been very supportive, and I work in an environment which is inclusive and accessible. I had the assistance from Job Access upon commencement of the role, and was provided an accessible desk, computer equipment and hands-free telephone – they also helped determine suitable job modifications. I have also been supported by the NDIS, and together, these two Government organisations have supported me in ways which have made a huge difference to my work experience.

TRAVEL

As a young man, travel, adventure and new experiences are important to me. I realised early on, that my disability did not mean I had to stay put, and since those in the travel industry are increasingly updating their offerings to be more accessible, I have been keen to go out and explore the world.

Pre-Covid, I visited New York, where I travelled with Australia’s national carrier Qantas. My experience with Qantas was nothing short of awesome, and I was most impressed with the service received. I travelled Business Class on this trip, which meant I also had access to the Qantas Club – as being a long-haul flight, it was always going to be much more comfortable to have some added room and amenity. Qantas were very supportive in terms of assistance, starting with check-in and my journey through customs. Overall, staff were very helpful, without being intrusive, and could not do enough for me to ensure my flight was not just accessible, safe and comfortable, but done with dignity in mind.

I was keen to holiday again soon after and booked a holiday to Hawaii, where I was able to use a beach wheelchair to take a dip in the ocean on Waikiki Beach. I also enjoyed my first snorkelling adventure at Shelly Beach, NSW. On both occasions, after over 25 years of not being able to partake in water sports, I appreciated the ability to access activities in a safely co-ordinated and accessible way. You can read more about these adventures on my website!

That being said, I have experienced some less than savoury aspects to travel. For the most part, this revolves around access to accessible accommodation. My biggest beef right now, is being dupped as paying customer for the luxury of an accessible room at a hotel or resort, that claims to be accessible or to have accessible facilities, but don’t. Wheelchair users, for example, require a larger space in which to move around unobstructed. Often when I travel, I find that the ‘accessible rooms’ are not what they are advertised as. They are too small, beds are too high and boxed in (which means I am unable to use my hoist), and more often than not, the hotel management are not willing to take a larger bed out and replace it with two-singles, which is my preference. This is a shame, when I may be paying to stay for as long as two weeks, which is often the case. More thought needs to be put into Universal Design and configuration of accessible hotel rooms, bathrooms and public amenities – particularly unisex toilets, which often do not cater for wheelchair users.

PUBLIC TRANSPORT

Having lived in Brisbane all my life, I have seen massive improvements in the accessibility of public transport in the South East Queensland corridor. Buses and trains have become more accessible over time, with the introduction of accessible stations, platforms, amenities and systems – meaning I can largely travel independently. On a train, I need to let someone know, so I can be assisted on and off the carriage. Whilst bus travel has improved, at this point, I no longer need to pre-book 2 days in advance, as all buses are accessible. The bus stops are also slowing becoming more accessible and wheelchair friendly. Taxis are another matter entirely, and whilst there are accessible taxi’s, even though I pre-book, I can still wait over an hour for an accessible taxi to arrive – impacting work, support workers, and my daily life! I also need to ensure the pickup and set down points are accessible. For something as simple as a short journey into town, this is quite time-consuming and labour intensive.

I have a better experience using the Gold Coast trams, which are awesome, and have obviously been very carefully thought out in terms of access and design. Additionally, TransLink offer an Access Pass for those with a permanent physical or intellectual disability, meaning there is no need to use a physical Go Card to touch on and touch off – this is especially appreciated by myself and others who have hand dexterity disabilities.

DIGNITY

Dignity to me, is simply being included! Whether this is employment, travel or leisure – dignity to me is not being excluded or separated from my family, friends or peers. Dignity is being able to function as independently as possible – it is also being able to maintain my confidentiality, particularly in my personal life – and the ability to go about living, and doing what I want to do, without being hindered or having obstacles block my path.

Dignity is inclusion, access and accessible design. It is about taking time for others. To be respectful, mindful and helpful, to go the extra mile to give someone a hand… it is as simple as holding the door for someone. Put yourself in another person’s shoes and treat others the way you would like to be treated.

For more information or to collaborate, contact Lindsay here.

This blog was first published on The Dignity Project in March 2021.

Andrew Gall, whose spiritual name is kurina – is a pakana (Aboriginal man) from Iutruwita (Tasmania) who is currently completing his Doctorate in Visual Arts (PhD) with Queensland College of Art, Griffith University.

Andrew, as a First Australian, has strong ties to his culture, practicing traditional ways of being, including hunting for food and natural medicine. His art practice, which includes traditional painting, digital printmaking and jewellery manufacture, stems from stories about his people’s traditional lands and heritage, as well as his personal and spiritual past.

Andrew’s life journey was changed forever – when, as a teen, he was shot in the right forearm with a 12-gauge shotgun. Andrew recalls that ‘this should have a) killed me or b) left me without a right arm. But neither happened, due to the foresight of a surgeon who had just learnt of a new technique that might save my arm. I was told by the surgical nurses that Dr Morgan made a call and said to everyone, "we are going to try this new technique, if we try and it fails, at least we tried".’ The surgery was a success, and whilst Andrew has limitations with the use of his right arm, his resolve to keep moving forward with his dreams and goals through continued education and positive determination has been life changing.

As a young school student, one of Andrew’s first experiences that shaped the path he would soon follow, was having a teacher who suggested he could not become an artist, due to his disability. Undeterred, after graduating from secondary school, Andrew started a journey down the road called the Bachelor of Contemporary Australian Indigenous Art, and it was at this time ‘the words of this teacher came back to me, especially at times of critique or examinations.’

‘It was not until three quarters of the way through my honours year, when I stood up to present a small story of my art, when towards the end of the presentation, my lecturer Dr Laini Burton said “Andrew, it would appear that you do not consider yourself an artist, is this so?” I paused for a couple of seconds before I answered… “Laini, yes I have not been considering myself as an artist, however, I believe I am”, I then went on to tell the story about the teacher from my past, her words and how they affected me.’

Andrew has had many more lived experiences and realisations about his potential to become a successful Aboriginal Artist and jeweller, which have shaped the man he has become today. As an artist, academic, researcher and powerful advocate for disability inclusion and diversity, he is passionate about the benefits of continued education, particularly for First Nations Peoples and those with disabilities.

Andrew’s journey is now dedicated towards challenging society’s perception of what people living with disability can achieve and contribute, in addition to using his personal experience of managing systems to help others. ‘To achieve your potential, whether you have a disability or come from a strong cultural background, or perhaps you are both, [focus on] what is in your heart and start down the path to achieve it. This pathway can be riddled with ruts of doubt and stones of negativity, but it also has gateways to success, and it is these gateways you need to focus on – because that is where your potential is’ asserts Andrew. ‘Everything I have done, I have done off my own bat, by following a journey which has had multiple forks containing even more journeys, which ultimately make up the journey of life.’

The journey of life, as a First Australian, is an important part of Andrew’s art practise. ‘Storytelling in my culture, is the way in which kani ngini (old speak) and lore is shared and handed down. All my artworks and jewellery designs have a cultural name and story behind it. With my jewellery, I am utilising palawa Kani (my language) in the naming process, and by doing this, I am able to share my culture with the greater population. The name of my art provokes conversation… conversations are a key to knowledge and understanding – particularly in my own culture. Thus, I’m hoping by sharing my journey, it may open doors for other people, who may have a disability and would like to travel down the road of becoming an artist – and all of its varieties from painting and sculpture to jewellery, and not be hindered by words spoken in the past… because you can do it!’

Technology and its evolution is something that has had huge implications in the success and enjoyment of Andrew’s studies and art practise. Andrew uses a voice recognition software program called ‘Dragon’

that helps him word process assignments and anything else that needs to be presented as digital content. ‘It is great, as the disability in my right hand hinders me from doing much typing at all’ said Andrew. Andrew also has ‘Sonocent’ dictation software installed on his phone and PC which helps to take notes, by recording the lecturer, tutor or mentor, so that it can be transcribed later. ‘Both programs work hand in glove… also, there is another piece of technology that I would like – and that is a bionic forearm 😊.’

As an advocate and academic, who works in the disability sphere, Andrew has strong feelings about what dignity means to him. ‘To me, dignity is my right to be valued and respected as a person, regardless of how I look, how I talk, how I walk, or how I write… that’s what dignity means to me. There is an incident that will be with me for the rest of my life… one that was a game changer in the way in which I viewed disability. This incident occurred way back in 1975 by myself and my peers, as we were about to graduate high school, and we had to inform the school’s Careers Guidance Officer what we wanted to do career-wise, after leaving school. Not long after this, we had a visit from the Commonwealth Employment Services (CES) Vocational Officer, whose role it was to inform and provide us with relevant information and contacts regarding our chosen path. After this officer had spoken with all my peers, it appeared that I would be last, however the Vocational Officer started packing away his information. I put my hand up to get his attention, and when I did, I asked, “what about me?” He looked up and he said, “you’re Andrew… your disabled, you will not need to work”, my response was not good at all. I had never considered myself disabled, in any way, shape or form – and from that day, I made sure that I chose some of the hardest and physically demanding jobs that I could take, and the rest is history. No one should be judged by the way they look, by the way they talk, or the way they walk, by the clothes they wear, or by the colour of their skin – after all, we are all humans’.

Of what he believes needs to be done to ensure everybody is treated equally and equitably in all aspects of life, Andrew stops to ponder… ‘Here is a question which is so huge! So much has been achieved already, but it is like trying to melt an iceberg with a candle – it can be done, but it will take a huge candle and a lot of time. Education and communication are the most prominent tools at our disposal, and one that always should work hand in hand. Shining a light on the success stories, highlighting the inequality that exists, and providing solutions to these problems are vital in moving forward’.

Andrew’s advice for Community Hub Members who are looking to achieve long held dreams and goals, is that ‘it does not matter how far along in your journey you are; you can still learn new things, you do not have to stay on one path, there is so much more out there for us all. Above all you do, be true to yourself, treat yourself the way you would like to be treated, and even if you don’t feel like it, try a little kindness.’

All the best on your journeys!

This blog was first published on The Dignity Project in March 2021.

To celebrate International Women’s Day, we are honoured to invite Julia Robertson to be this week's 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. https://youtu.be/MpVrh9yc9fQ

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.