Llewellyn's employment journey

During the development of season two of our documentary series Perspective Shift which explores the life experiences and employment journeys of three people with disability, we realised that there were far too many community stories going untold. In an effort to amplify the voices of our community and shine a light on repeating themes in our society, we connected with some people who wanted to share their stories. 

 

In 2014 I developed a hereditary eye condition that destroyed most of my vision. Four years later, to the day, I chaired a Committee of the Board of the hospital where I was diagnosed.

This fact still seems miraculous to me. But there is much about acquiring a disability half-way through my life that has been deeply transformative. Transformations rarely happen by accident. They take determination, collective effort and adherence to clear principles as particular outcomes are sought. In my case, I worked hard to adapt to disability. I also benefitted from the Victorian State Government’s policy of improving diversity on public sector boards, something the private sector could learn from. In addition, I have been supported by colleagues determined to ensure an inclusive workplace. My employment journey since losing my vision has had plenty of low points and setbacks. But it has also filled me with a new sense of possibility and purpose.

When I first lost my vision I was determined to learn the skills I would need to keep working. I had run my own business for about seven years, providing writing and communication services and helping to develop public policy. Before that, I had worked as a lawyer and a public servant. In 2014 I was also volunteering on the board of Cohealth - a large community health organisation. 

Adapting to my low vision was daunting. The day I realised that I would need to learn to use a computer by listening to it and using keyboard commands rather than the mouse and my eyes was a low point. Honestly, I felt like throwing up. But it was also good to be learning new skills and getting proficient. It all took time and effort and lots of support from family, friends and networks.

Learning to walk with a white cane was much the same. One of the hardest things was adjusting to the different way people reacted to me when I had a white cane. In shops, people would ask my husband “what does she want” as though I was incapable of speaking for myself.

Eventually, I learnt braille. For someone who loves to read this was an exciting and wonderful thing.  It also dramatically improved my functionality in workplaces with the help of assistive technology.

I kept volunteering as a director on the board of Cohealth. This unpaid work did two things. It helped me build up my confidence and ability to adapt among people who knew and respected me. It also clarified what adjustments were needed for me to work on the board. These included providing papers in accessible formats, receiving PowerPoint presentations early so I could read them in advance – good practice for any board – and extra time with management to get my head around complex charts and other material. I have to commend Cohealth for all that they did to help me successfully return to work.

When I first got my diagnosis I asked for a Fight Club approach to it – the first rule of Fight Club is that no one talks about Fight Club. I found peoples’ awkwardness about my disability (and disability in general) too confronting back then. The platitudes and pity felt like rocks being thrown at me. Everyone at Cohealth respected my request for silence. When you have a disability being very clear with others about what you need is a critical skill. It takes reflection and courage and it never gets easier.

My initial aim was to try and keep the business I had built up over seven years. It became clear to me that writing and editing in this new way was much less enjoyable. Now that I look back I think I needed some more time to grieve the change rather than pretending I could just press on in the same way. Accepting my new way of being was very important in my employment journey. It let me leave things behind and pursue new opportunities.

In 2015 I applied for a number of Victorian Government board positions. I was appointed to the Eye and Ear Hospital and Western Water boards. In January 2016 I was appointed to the board of the Public Transport Ombudsman. I know how difficult it can be for people with disabilities to find employment and I felt incredibly fortunate to be doing this work and making a meaningful contribution to these organisations.

However, even though I had plenty of experience as a company director, that first year as a vision-impaired director on new boards was very difficult. I was still in the process of accepting my disability and I definitely had internalised some of the everyday ableism in our culture. I was paranoid about being perceived as a token or as too much work and not enough value. I threw myself into the work and did my best to hide my disability. This included memorizing the Board papers and all of my comments and questions. Blindness gives your memory a super-charge. At that stage, I did not have the gadget that makes my life so much easier now – the equivalent of a laptop but in braille format. Skills and assistive technology make everything possible once you have got the hang of them.

Over time I have embraced my new way of being and I now have a strong sense of disability pride. I allow myself to be more vulnerable and also more assertive about what my experiences are and how organisations can improve to cater for diverse customers and employees. This brings me a sense of deep meaning and purpose. I have also had the pleasure of addressing staff forums in the organisations where I work as a director. There is no substitute for people being able to see a person with a disability performing a leadership role. Diversity and inclusion are not just symbolic but lived in the boardrooms that I work in.

My confidence has grown and I have taken on new challenges. In 2017 I completed the Williamson Community Leadership program. As a result, I now speak in public often – something I was terrified of before I lost my vision.  I am often told I am “inspirational”. This is tricky. I think it is because people are so unused to someone speaking about the positives and deep meaning that their disability has brought to their lives. Really, I’m just talking about being human and wanting the same kind of life and connection with others as anyone else.

Since I lost my vision the desire for new challenges has not subsided. Last year I started working as a contractor with the Nous Group, a management consulting firm, on policy and disability inclusion.

Here are some simple actions to consider:

It is important to appreciate that no organisation gets disability inclusion right all the time. Creating an environment where diversity is valued and inclusion is expected, where open communication about issues is the norm and where a person with a disability is an equal member of the team is something to strive for. I love the work I do and I love being able to draw on my life experience to make a difference and demonstrate disability leadership in action. Many people make this possible. The art is turning this into business as usual.