11th National Deafblind Conference – DBV group presentation

DBV were proud to present at the 11th National Deafblind Conference on 1st July. Five DBV members gave the closing presentation for the conference: “How Deafblind people run our own organisation”.

Jasper Cleland, Trudy Ryall and Michelle Stevens presented in Perth, and Alex Sar and Heather Lawson presented from Melbourne via a live video link. A video of the presentation is below; it is Auslan/English interpreted with live captions. Corrections for a few small captioning errors will follow.

Thank you to the amazing team of interpreters and commguides – all their names are listed below the speaker notes. Without them we would not have been able to make this presentation!

Abstract: Have you ever wondered how a group of Deafblind people can run a meeting? Hold community events? How would they access funding? What can they do without support, and what supports are needed? Since it was founded by three Deafblind people in 2007, Deafblind Victoria has become a flourishing community group with 45 members, a permanent office space and 8 staff. It remains grass-roots; all members and the entire committee of management are Deafblind, as are most of the paid staff. DBV runs a weekly drop-in program, monthly peer support events, a volunteer program, Deafblind Awareness training, and develops and shares information and resources. The physical space at DBV has been designed by Deafblind people, with communication and mobility needs in mind. In this presentation, members will share learnings, challenges and experiences in building and sustaining their unique self-advocacy group, including practises of peer mentoring and the development of Deafblind language and culture.

1. Heather Lawson – Origins, self-advocacy & awareness-raising

It was a start of learning what advocacy means. We received once-off funds for interpreters from DHHS for 12 months. When the funds run out, we stopped for a while, until we were advised that SARU (the Self-Advocacy Resource Unit) has government funds to help set up different self-advocacy groups.

From 2007, DBV ran as a self-advocacy group. It was run by deafblind people ourselves. Later on, we were able to access Victorian state government funding for interpreters. This enabled DBV to become involved in many things. We learned how to run our group, and we did many things including advocacy, self-advocacy, awareness raising to government and the wider community.

My role at DBV is Training and Finance officer. It involves awareness-raising, organising workshops for organisations, government, TAFE and so on. The workshops aim to improve access for deafblind people and make the wider community more inclusive. Different DBV members present at the workshops with me. It’s important to show different deafblind perspectives.

This gives deafblind people a chance to build confidence and learn self-advocacy skills. This is called “peer mentoring” – deafblind people learning from each other, how to speak up, share our lived experiences, educate others and work as a team. After being involved in presenting workshops, DBV members can do self-advocacy as an individual in their local community.

We also develop resources, such as the booklet called “How to communicate with me,” posters for public display, and fliers to hand out. Recently, we were asked by Melbourne Polytechnic, a TAFE with Auslan courses, to make a video demonstrating right and wrong ways to guide deafblind people. This video is in Auslan only, and is also a good opportunity for students to practice their Auslan. This video has been filmed and is being edited at the moment. It’s exciting!

DBV sells t-shirts showing tactile signing and the Auslan alphabet. Funds from t-shirt sales help us continue running as independent organisation. 

I think it is time to stop and hand over to Michelle to speak. Thank you. Enjoy your conference!

2. Michelle Stevens – Growing our group:

As Heather explained, I was involved in the very beginning of DBV. We were dependent on Able Australia to find interpreters for meetings. It was a start-and-stop process. Many meetings had to be cancelled because not enough interpreters, or we missed out on that month’s state government budget limit for interpreters. We eventually got some funding through the State Government’s Office of Disability.

The Self Advocacy Resource Unit (SARU) helped get our first ILC (Information Linkages and Capacity Building) grant. I had never done anything like it before, so it was an enormous learning curve.  Not only coming to grips with the terminology, but even accessing the submission forms. Fortunately, I had a commguide with me to explain things. The commguide was funded through my NDIS package. It was great having a sighted person with me to find information quickly.

We were not incorporated and depended on organisations to take responsibility for our grant applications and projects. It was difficult to find organisations that matched our criteria and the grant criteria. Heather and I worked with Auspicious Arts (AA) on another project, and AA they agreed to “auspice” our project – keeping records, paying invoices etc. We employed a part-time coordinator and worked only a few hours per week.

DBV’s first office was so small that it made working together very difficult for Deafblind staff members. We received a three-year Capacity Building grant so we moved to the old Ablelink office, which is great! We now have our own space where the Deafblind Community can gather, meet and call our own. There are 5 Deafblind project staff. As a project worker, my area is policy and supporting DBV members with any tech issues such as with Jaws, braille displays and iPhones.

We have a majority of Deafblind employees and the whole management committee is Deafblind. We make the decisions. I am particularly proud of our organisation’s sense of community. It is run by and for the Deafblind community of Victoria.

We recently became incorporated with Victorian Consumer Affairs and we have an Australian Business Number, so now we can invoice organisations in our own right. For example, Heather can invoice organisations for Deafblind world workshops.

We also have a constitution and formal office bearers. Later this year we will have our first Annual General meeting. We must have elections and submit a finance report annually. I am applying for charity status with the Australian Charity and Non-profit Commission so we can get tax-deductible donations. Like many organisations it is difficult to know where funding will come from. It will depend on the mind of the government and their budget constraints. But somehow, together as a Deafblind Community we can continue to grow and become stronger; apart we are weak.

3. Jasper Cleland – Members and support staff:

I’ve been fortunate to be working with DBV for a bit over a year now. My role on paper is youth officer and one of my original goals was to reach out to younger people in Victoria to get them involved in the Deafblind community. We mostly have an older group at the moment and it would be good for young people – especially if they’re going through the process of losing vision or hearing – to have that community support. If anybody here has networks in Victoria who might be able to support me to reach out to people under the age of 35, please approach me or send me an email. My email address is dbvjasper@gmail.com.

I have also taken on the role of memberships officer. I look after the membership database and deal with correspondence with members about upcoming events, and up to date COVID information and any other information that needs to be sent out.

We have a lovely diverse range of members with a wide range of communication needs. Some are oral, some use Auslan, some use visual frame Auslan, some use tracking or tactile Auslan. I use deafblind fingerspelling.

It is a challenge setting up committee meetings, given the range of communication needs of the committee. We have five deafblind members on the committee and usually eight to nine interpreters at a committee meeting, including a couple of sighted deaf interpreters. We also use people repeating what has been said, sitting close to a member. We have Roger microphones that connect to another committee member’s hearing aids. We have volunteers and interpreters helping us set up for the meetings.

It’s also really important for us to be able to run our own organisation to have appropriate supports which can include commguides, volunteers. I know Alex will talk to you more about the volunteers. We have two sighted hearing support staff who help us coordinate support, read over documents to check that the English is formal, and help us apply for funding, as well as doing other tasks that may require somebody’s eyes and ears.

4. Trudy Ryall – Peer support events:

I run events at DBV. Once a month we have deafblind café. Once a month we have craft group. About 15 deafblind people come to each event, and about 15 others like interpreters, volunteers and commguides.

These events are important to deafblind people. We are often very socially isolated. There aren’t many opportunities for deafblind people to get involved in the community. Craft is a great way to bring people along. They can do something with their hands, or just talk and make friends. Some deafblind people are great at different crafts and they teach others. It’s always deafblind friendly.

DBV craft group started off when there was a big yarn bombing project last year 2021. We got a grant from Tye Recreation fund and it was so popular that we continue it once a month. Kathy Wise she taught the group to make mobile Easter eggs and crocheting. Deborah Pennuto taught people how to make greeting cards. An art therapist volunteered her time to teach us how to use knitting machines, where you make beanies in 15 minutes. The deafblind people loved going home with their colourful knitted beanies. Sometimes we go to art galleries or exhibitions and make a day of it with lunch.

A lot of Deafblind people have poor mental health. It is no surprise, with the effect of social isolation, all the barriers, and the lack of support and services. Mental health for deafblind people is important to me.

Recently I organised a deafblind mental health workshop. We got funds from the Ben Souter Deaf Mental Fund. I was the facilitator and my sister Kate who is a senior psychologist at Aurora a preschool for deafblind, blind, deaf other disabilities children. Jasper Cleland spoke about his mental health experience as a deafblind person, with a lack of supports in health systems. We got information from members about their understanding and experience, which helps us know where to target support and advocacy. Members learned relaxation techniques.

For Deafblind Awareness month we had a celebration and connected with a group in South India. They look like they are very similar to DBV – an organisation led by deafblind people. But maybe with even less money! It’s proof that there is always a way for deafblind people to make things happen if we are creative and resourceful. Thank you.

5. Alex Sar – Volunteers & Deafblind pathways:

Hi my name is Alex, my name sign is Star. Sorry I don’t sign so I will talk.

I work as the Volunteers coordinator as well as the Recreational coordinator at Deafblind Victoria.  I provide opportunities for Auslan students at Melbourne Polytechnic to come in a couple of times a month to support the Deafblind staff at Deafblind Victoria as well as our Deafblind Victoria members. By volunteering here at Deafblind Victoria, Auslan students can work towards becoming a Communication Guide or Interpreter depending on which path they choose. We also have deafblind people as volunteers, which I personally think is a good thing. I have advocated to ensure that we have more deafblind people as volunteers and we’ve got up to 3 deafblind members who are now volunteering. That makes my job a lot happier.

Deafblind members have really embraced the volunteers program and it has been a huge eye opener to see the impact this program has had, considering the challenges that some have faced this year with commguide shortages. On top of that, I have several volunteers who are interpreters who come in to do interpreting, and that has been a big help to DBV as well.

I also run the recreational program, in which we do community participation. This has really been a success so far this year considering that over the years, previous organisations have had this program, and I was able to restore the program again.

Before I started working here I first became a Deafblind Victoria member about three or four years ago and really had no knowledge at the time of what DBV was all about. I had been approached by Heather over 12 months ago about looking at the potential of working here at DBV, so I jumped at the opportunity straight away. Gaining employment for me for most of my life has always been difficult and just something that I felt at that point in my life was really needed. I wanted to throw myself into the workplace.

I also thought it was meaningful that Heather has asked me, because Heather was actually the first deafblind person I met. When I was first introduced to Heather 18 years ago, I was going through the cycle of losing my sight at the time. So the past couple of months I have been elected onto the Deafblind Victoria committee. Being able to sit on the committee in meetings for me has been really powerful.

With the right support, I personally believe that not just disability organisations but any sector across Australia who may have deafblind people applying for a job, I really personally highly recommend to think about the potential of employing deafblind people. We can make a difference and we can liven up your work place! With the right support, the right technology and the right location, we can succeed.

On behalf of all our staff at Deafblind Victoria, thank you so much for having us here at the National Deafblind conference. We are happy to answer any questions that you may have.

Thank you and goodbye.

Interpreters & commguides for this presentation (alphabetical order):

Ntennis Davi, Chris Dunn, Marc Ethan, Justin Gadze, Mac Gordon, Mike Levett, Tom King, Troy Lawton, Alex Notsis, Teresa Paulet, Amber Richardson, Linda de Rozario, Natalie Sandon, Matthew Trickey.