Spotlight

Jake Lewis

LGBTIQ Disability Project Worker at VALID

What are you most proud of in your working/volunteering life?
My work at Thorne Harbour Health and VALID, raising up the profile of LGBTIQ people with a disability in the LGBTIQ community, disability sector and wider community.

If you have lived experience, what is the level your disability impacts your ability to work successfully?
I do have a lived experience of disability but I guess I’ve structured my life in a way that means my work is not limited or impacted.

What are your hobbies / interests?
Memes

How do you see inclusivity in volunteering currently
A lot of amazing skills and knowledge are going unutilised because of the structural and altitudinal barriers. This can so easily be changed. There is great benefit for both volunteers and organisations.

How do you hope to see inclusivity in volunteering in the future?
We need to recognise the value that each volunteer can bring to organisations and the community, whatever their ability.

What is one thing that would surprise people about you?
I released a mixtape in 2008 called Computer Beach Party which was named by Inpress Magazine as their most listened to record for 2 consecutive weeks.

If you could change one thing in the world it would be…
… global political change that addresses climate change and the accumulation of wealth at the top.

Final thoughts?
I work with organisation to build their capacity to meet the needs of people with a disability. I think it’s important to highlight that it’s the way in which society is organised that create these barriers. I think it’s important to highlight that; in this age of information, this also extends to our digital spaces. We need to start thinking about digital access.

Ali Street

Community Development with Local Government

Your current role (volunteer or otherwise):
Community development within local government.

What are you most proud of in your working/volunteering life?
Ability to find and apply valuable learnings from each job I’ve held - whether it be in audio engineering, house cleaning, editing tv programs, early intervention program, sandwich making or working in local government.

If you have lived experience, the level your disability impacts your ability to work successfully, or the level to which caring for someone with a disability impacts your ability to work successfully or help them successfully (roadblocks, organisational or management issues, accessibility, etc)
Have stalled and changed careers in order to suit sons’ changing needs. This has had an impact on career progression and finances. Have had to work hard to ensure able to juggle work requirements and any crisis whenever these occur. Extremely supportive employer. Constant balance between advocating for and working alongside son to find appropriate work/volunteering roles with own career. Have found this harder now he’s an adult.

Quote on how you see inclusivity in volunteering currently:
Largely depends upon organisation/sector, but almost non-existent within public sector despite values aligning with inclusion, and often not sincerely approached within corporates as they are often seeking tick off on corporate social responsibility.
Volunteering sector is as underwhelmed with examples of inclusive practice as any other – entertainment, sport, politics, media, corporate, science, education, health - but possibly the most appropriate place to start to change.

Quote on how you hope to see inclusivity in volunteering in the future:
There will be no need to discuss inclusivity as this will be normal, expected starting point. NFP’s and FP’s alike will be well-resourced and capitalising on the benefits that come from building communities within their walls which reflect those beyond them.

Any awards or recognition you have received:
Innovative employee stuff, old tv bits – still working on the stuff that really counts!

What is one thing that would surprise people about you?
In-built lie-detector superpower, inability to remain seated during any Die Antwoord tracks, capacity to endure episodes of Antique Roadshow from beginning to end – happily.

If you could change one thing in the world it would be…:
Introduction of global anti-intolerance and anti-greed immunisation scheme. Reversal of negative human impact on the planet. The absence of Bowie and Roland S Howard – reboot required.

Final thoughts?
Everyone has a unique story beyond the details requested on forms or the pictures presented. If we take the time to listen and understand this, the more we realise there is nothing to fear, we are never alone and there is so much strength to be shared.
Oh, and West Coast for Premiers AGAIN.

Viv Cunningham-Smith

CEO Eastern Volunteers

What are you most proud of in your working/volunteering life?
The outcomes we achieve for people who use our services and my social justice work. I am also very proud of the governance work we do to support volunteer Boards of small community organisations so they continue to provide much needed services to their communities. I have a very strong commitment to ensuring diversity of service provision in the community sector.

If you have lived experience, what is the level your disability impacts / impacted your ability to work successfully?
I do have lived experience of disability. As a teenager in the 1980’s! I had idiopathic epilepsy. It was poorly understood and very stigmatised. The roadblocks which were there such as trialling experimental medications which doped me out at school etc I managed to get through and graduated as a social worker in the early 1980’s. The fear however in disclosing to employers I couldn’t drive and I had seizures was enormous as there was absolutely no tolerance for it. Speaking about it now is still a little confronting as it was so instilled in those days that disability was kept silent and secret. Since that time my seizures have ceased and hopefully employers have become a little more inclusive.

What are your hobbies / interests?
My wonderful cats Mr P and Dandelion and my galah0020Spot. I am a bit of a family history tragic.

How do you see inclusivity in volunteering currently?
I see many community organisations open and enthusiastic about inclusive volunteering but a little apprehensive in offering placements due to concerns about resource constraints and the capacity to support people in placement. Our community sector is being stretched to the maximum with poor levels of funding and increasing demand. Moving forward I see a greater reliance on volunteers to provide services as government funding contracts. That is why in partnership with Victoria Alive we held the recent Eastern Forum to develop a regional action plan for the East and South East metro areas to open up volunteering placements for people with disabilities and support organisations to offer meaningful placements. We are looking for 50 organisations in the East to put their hands up and Carrington Health led the way as the first. We are now in the process of finalising that action plan.

Quote on how you hope to see inclusivity in volunteering in the future:
There will be no need to discuss inclusivity as this will be normal, expected starting point. NFP’s and FP’s alike will be well-resourced and capitalising on the benefits that come from building communities within their walls which reflect those beyond them.

How do you hope to see inclusivity in volunteering in the future?
People of all abilities who want to volunteer for an employment pathway, for their own good health and identity or to give back to community can do so without impediment.

Awards or recognition you have received...
Eastern Volunteers work was recently recognised by winning the overall Deakin Community Award in the group category for our contribution to the Deakin community. We also won a Whitehorse Business Award for recognition of our work in community transport including disability transport.

What is one thing that would surprise people about you?
I’m quite shy.

If you could change one thing in the world it would be…
Inequality and its impact on people, communities and our economy. Research is overwhelming in showing inequality is bad for economic growth, did you know that?

Sarah Barton

Fertile Films

What are you most proud of in your working/volunteering life?
I’ve always combined my work in the community sector with volunteer work, mostly on boards and management committees because I don’t have a lot of spare time for weekly or fortnightly volunteering. I’ve served on the committee of management for the Anne McDonald centre for about 9 years. They are a wonderful small organisation that advocates for people with little or no speech and also helps them with the means to communicate like “yes” and “No” buttons and iPads that have speech software. Anne McDonald was a trail blazer and the centre that bears her name has helped many other disabled people to find their voice and communicate for the first time. It’s life changing.

The level to which caring for someone with a disability impacts your ability to work successfully or help them successfully
My daughter has a physical disability so supporting her is my lived experience. She’s at university now and very involved in community radio and disability advocacy. She’s starting to be more well known in the disability community than I am now which is wonderful.

Your hobbies / interests:
I love my work and I don’t have a lot of time for hobbies but I do love to cook. When I get the chance I also love to go hiking but that’s not very accessible for us as a family so the opportunities are limited.

How do you see inclusivity in volunteering currently?
I’ve been involved in a number of disability related not for profit organisations and they are always wonderfully inclusive places. I find myself a bit shocked when I go somewhere that is really clueless about access. I think “how have they got away with that for so long?” Really disability access is everybody’s business and it’s a matter of tuning in, listening to people’s access needs and finding a way to make it work.

How you hope to see inclusivity in volunteering in the future?
I’d like to see all organisations encouraging and welcoming people with disabilities as volunteers and opening the paid employment pathways that often come from volunteering. No one needs to stay at home isolated and bored if they can find a friendly organisation to get involved with. It’s great for mental health to make a contribution and to be part of a community. I think every organisation should expect to have disabled volunteers and to support their involvement.

Any awards or recognition you have received:
I’ve won a few film and television awards over the years and in 2010 I won a Churchill Fellowship that really helped me get my documentary Defiant Lives going. It was a wonderful experience.

What is one thing that would surprise people about you?
That’s hard because I don’t think I’m very surprising, but I did begin making films about disability many years before my daughter was born and diagnosed with her impairment. When she came along I just decided that the universe was telling me I needed to get more involved in using my filmmaking to advocate for people with disabilities and that’s pretty much what I’ve done ever since.

If you could change one thing in the world it would be…
I wish humans had done more to tackle climate change and the degradation of the environment decades ago when we first became aware that we had a crisis on our hands. When the worst effects of climate change are being felt it will be the poor and disadvantaged who will suffer the most. So I’d love to see greater social equity and really dramatic action to address climate change and looking after our natural world.

Other comments:
When I’m working I live by the motto “be organised … and flexible.” Sometimes all the organising in the world can’t stop things from falling to pieces and if that happens you need to come up with a plan B pretty quickly. If you’re organised though you don’t waste time thinking “What if?”

Julyne Ainsley

Volunteer Coordinator and Volunteer at Duke Street Community House

What are you most proud of in your working/volunteering life?
Definitely getting the Volunteer Coordinator position at Duke Street. I was so shocked when I was asked! I never dreamed I could ever be doing that because it’s like nothing I’ve ever done before. It’s been very challenging for me, having to learn new skills, but I’ve been able to do it at my own pace and with help from a mentor and now my volunteer support worker. I’ve made a volunteer handbook and some information sheets – it’s been scary but good. It’s taken a while in my life to get where I am, but it’s marvellous! I was also voted to become Vice Chairperson of Duke Street Community House and help that position for 2 years. The cheeky Chairperson was absent a few times just to force me into Chairing the meeting! It went really well but I was so nervous… It’s all been a wonderful learning experience

If you have lived experience, what is the level your disability impacts your ability to work successfully?
I’m a survivor of domestic violence, which led to many traumatic events and also led to an acquired brain injury. Previously I had major anxiety attacks when I left the house, so I was basically home bound. The anxiety attacks were terrible, I couldn’t breathe properly, like my heart was outside my chest. I still have issues going outside – my stomach churns and I get really nervous. I don’t let it beat me but it’s a challenge every time. Another roadblock for me is that if I’m surrounded by too many people I don’t know, I get very anxious and need to find my own space or corner to feel safe and in control. I don’t do well with a lot of crowds, but my support worker will talk me through things and help me when I need it.
At first leaving the house was terrifying, but I had to learn how to use computers and my supports helped me through that. The first time I was being taught `{`on computers`}` I was terrified, my fingers wouldn’t even work, but the teacher was so understanding and just terrific. She helped me at my own speed so I didn’t get too overwhelmed.
It’s taken a while for me to understand that what I’m doing is actually helping people – I’m starting to feel good and see that I’m a survivor. It’s been so hard but even though I’m still scared I’m a bit more brazen and bolder now. I’m learning who I am and how to be that person. Where I am right now – I’m happy with the person I am.

What are your hobbies / interests?
I haven’t done it for a long time, but I love ballroom dancing! One goal I’m working on is to get back into it. I also love reading books, and my favourite authors at the moment are Agatha Christie, Stephen King and Stephanie Myer.

Quote on how you see inclusivity in volunteering currently
There is still a long way to go to be fully inclusive, but I really do think people are more aware now of people with disability and how to accommodate them. It’s just slow to change because people are slow to change their old views.

Quote on how you hope to see inclusivity in volunteering in the future
I would like to see a lot more people with disabilities coming in and doing more - being in senior management more and holding positions on boards. I would like to see more people respecting the abilities of people with disability.

Any awards or recognition you have received
I’ve received recognition for leadership training and governance training.

What is one thing that would surprise people about you?
My cheeky sense of humour, which gets me into trouble sometimes!

If you could change one thing in the world it would be…
People’s attitudes. People need to show more respect not just to people with disability but ALL people.

Other comments:
People with a disability ARE PEOPLE. We do have a mind and we do have things to say. We can do all sorts of things, we just need to be given the chance.

Dominic Szeker

Project Manager, Victoria ALIVE

What are you most proud of in your working/volunteering life?
There are so many things which I don’t want to compare. One highlight was leaving my job for 5 months and going overseas to volunteer on a political campaign (not telling which one!). It involved the longest hours I’ve ever done, being totally committed to the cause. You end up knocking on doors of people from all walks of life. Making close friendships which are so meaningful because you were going through everything together. You get thicker skin. You stretch yourself. Even though we did well in our area, the campaign lost in general. The whole thing cost so much money too. Plus I was away from my partner at the time. And yet I would definitely do it all again.

Your lived or carers experience:
My mother has a psychiatric disability. I grew up around family friends my parents had met in mental health institutions. Most of the situation had unfolded in the 1980s in New Zealand and there was a lot that could have been improved with the medical practices and social understanding. My mother hadn’t worked or volunteered since I was a teenager. By coincidence she did a bit of volunteering while I was working on this project. She is really friendly and loves to chat so she volunteered for a charity collecting money on the main street of her small town. It made my day to hear that she was doing this. There is something about volunteering which is different from friendship, clubs, working or other ways of participating. It’s more meaningful to me as it’s a cause-based activity which is really about improving things for all of us. And it’s really good for people to be active in our communities, rather than staying home.
Overcoming negative attitudes and concerns from the public to me seemed to be a major barrier to her participating through volunteering. For family members of people with disability I imagine they would have similar feelings if their loved ones with disability get involved in volunteering. That’s something I want to be more widespread and normalised.

What are your hobbies / interests?
Music is my biggest interest. I used to play music myself but still go and watch a fair amount. It just makes everything better.

Quote on how you see inclusivity in volunteering currently
There is such a range of volunteer-involving organisations and disabilities to consider, so a hard question to answer! While the arc of justice over centuries and decades seems to be bending towards justice… there is obviously far more to go until we live in a fair society. I think the main thing about inclusive volunteering, and volunteering in general, is that it isn’t front of mind. Even though it’s a way of having meaning in your life, finding friends, getting some support, establishing work experience, many organisation and governments don’t have volunteering at the top of their agendas.
So inclusive volunteering is happening all around us, but it needs to be a higher priority.

Quote on how you hope to see inclusivity in volunteering in the future
I want it to be in everyone’s face and invisible at the same time. Recognised and normalised.

Any awards or recognition you have received
My old team in the Department of Economic Development, Jobs, Transport and Resources (DEDJTR), won an award for establishing Regional Partnerships. It was an amazing amount of hard work and long hours. But even compared to that, even without an award, what I think our Victoria ALIVE team has achieved is going to stand out in my mind for the rest of my career.

What is one thing that would surprise people about you?
I’ve been to about 35 countries (depending on how you count them!). I feel guilty about contributing to climate change by flying so much (even after offsetting flights), but I love exploring the amazing world around us and breaking away from the daily routine.

If you could change one thing in the world it would be…
A little bit less like Dante’s Inferno and a little bit more influenced by the wise teachings of Dr Seuss.

Other comments:
Through the project I’ve been blown away be everyone’s willingness to share their stories of lived experience with disability. And also really wide-spread interest from the volunteering community. I kept learning new things at every event we held. Such an amazing and inspiring insight into what’s going on around us and the contributions that people are making.