Deafblind Victorians, formerly called Deaf Blind Advocacy Group Committee, met personally Julia Gillard PM and Jenny Macklin MP at the Community Cabinet meeting held at Norwood Secondary College on Wednesday, 17th April 2013. 

It was an exciting day for the Deafblind Victorians (Trudy Ryall, Heather Lawson and Michelle Stephens) who met personally, for half an hour, with Julia Gillard and Jenny Macklin at a 40th Community Cabinet Meeting in Melbourne.

Heather Lawson asked if she could feel Julia Gillard’s hair and she did allow it. Heathers comment was “your hair is really thick.”

They all talked about the barriers the deafblind community face today and self advocacy for the deafblind community. (see attached speech notes below.)

Trudy Ryall presented to them a DVD that was made with SARU, Jodee Mundy and the Deafblind Victorians – a reflection on our lives and what it is like to be deafblind.

Julia Gillard and Jenny Macklin received a deafblind t-shirt each and were encouraged to practice their finger spelling printed on the back of the t-shirt.

Heather Lawson raised at the forum the issue of closing Kangan Batman TAFE Auslan courses and the reduction of trained interpreters for deafblind community.

The meeting went really well.

Photos courtesy of Mark Graham and are copyright of the Department of the Prime Minister and Cabinet.

Speeches For Julia Gillard PM and Jenny Macklin MP

(Courtesy of Trudy Ryall)

Trudy:

Thank you for the opportunity to meet with the Deafblind Victorians to meet with you all.
I am Trudy Ryall I had meningitis at 1 year old diagnosed with deafness at 3.  In my forties I was diagnosed with Retinitis Pigmentosa – tunnel vision.  I have a brother with the same genetic condition and it is called ushers.

We are the only deafblind self advocacy group in Australia ran by and for the Deafblind community.  One of the major problems for the deafblind community is Communication Access and access to funding.

There are different types of deafblindness and deafblind people communicate in many different ways which is determined by the nature of their  condition, the onset of Deafblindness  whether it is present at birth or acquired later.   This determines what resources are available to them.
Some are like Helen Keller (deafblind American) or some still have a little bit of vision and hearing.

For example, someone who grew up deaf and experienced vision loss later in life is likely to use sign language and English is their second language.
Others who grew up blind and later became deaf are more likely to use a tactile mode of their spoken/written language.

Methods of communication include:

1. Use of residual hearing (speaking clearly, hearing aids)
2. Use of sight (signing within a restricted visual field or writing with large print).
3. Tactile signing, sign language, or a manual alphabet such Deafblind Alphabet (known as “two-hand manual”) with tactile or visual modifications.
4. Sign language Interpreting services or communication aides.
5. Communication devices such as Screen Readers and refreshable Braille displays..

One of the major issues is Deafblind Victorians have problems accessing the appropriate communication for the deafblind community to meet and learn about Self Advocacy.  We are unable to have more deafblind people join our group because there is a lack of funds to meet their special communication needs.  We often have to cancel meetings for this reason.

The deafblind community lives would be vastly improved if the UN convention of rights was used to have access to communication funding and be free of exclusion from fundamental freedoms of life.  The deafblind community want to find a way of accessing communication like going to a football game, getting a job or obtaining an education.
It would be good to create Australia wide disability self advocacy on a national level training and funding for groups to have on-going training and communication access.

Thank you for your time now it will be Heather and then Michelle speaking.

Heather:

Hi my name is Heather Lawson.

I am deafblind and have Ushers Syndrome, like many others similar to me.  I have been deaf since birth and as I grew older I gradually lost my sight because of Retinitis Pigmentosa (RP).  My vision started to deteriorate when I was young and got worse as I grew older.  Now I have no sight.  My brother and sister are also deafblind which is caused from a genetic condition called Usher Syndrome.

I have used tactile signing for about 25 years which means I touch people’s hands to understand what they are saying when they sign. This way of ‘touching communication’ in Auslan is part of deafblind culture and the deafblind world. Without tactile communication, I am isolated and frustrated for not receiving any information.

What are the barriers to the Deafblind Community and the quality of life for our community?
In Australia many deafblind people are isolated, have different barriers due to vision and hearing loss such as restricted mobility, lack of communication opportunities , not  enough support  as well as mental health issues due to depression, grief and isolation. They need help. But where will Deafblind find the appropriate services? Many professionals, carers, and counselors in many disability organizations do not have any type of knowledge or skills working with deafblindness.
Three of us use deafblind services through Able Australia where most staff have the skills and knowledge working with deafblind people. However, there are a significant amount of deafblind demands for help or support which is badly needed from specialized Deafblind services which make it very difficult with limited    funds.  This is due to staff and shortage of funds. It is a huge problem if we choose to use other disability services and we are not given opportunity to choose who we use.

What about specific services for deafblind people in each state in Australia? Why DHS or Government says they cannot give funds to small organisations. It is true that deafblind need dedicated services not about small organisations. We cannot see or hear the world around us.  Deafblind people are trapped at home because of a lack of dedicated support. It is not fair that they could not afford to pay carers but they need welfare support, independent living skills training. Other issue deafblind are unable to go to TAFE to learn about technology. We cannot have a teacher to teach 10 deafblind students in a room.  It is vital to have a one to one support like aide support.

We want to enjoy life, go out.  But not just a few hours support a week but when we need or want to we should have the right to go out when we like. We don’t want our home to be a jail but it feels like it sometimes.  The only way deafblind people can do that is to have fair access to both human and technical resources that allows us to enjoy a good life and to participate in the community when we want to – our rights, our choices, our dreams, and our rights to tell government we want the same access as everyone else.

Will the government and NDIS help us?
Will NDIS and deafblind services work together?

Thank you now I want to ask Michelle to talk briefly.

Michelle:

Thank you, Heather.  My name is Michelle Stevens; I was born blind as a result of prematurity and lost my hearing completely due to chronic ear infections and complications.  As a full time musician and piano tuner I depended upon my hearing, my livelihood depended upon hearing.  My road to rehabilitation has been long, bumpy and hard.  Fortunately, I have learnt various skills in communication Tactile Auslan and mobility skills with my Guide Dog, and learning about technology.

When I first lost my hearing completely I thought there was no hope and I wanted to take my life and die.   20 years on, I finished University at La Trobe, with a Bachelor of Arts and Grad Diploma in Deaf Studies with a lot of help from the University, interpreters and my lecturers.  Able Australia and the music therapy department have encouraged me to playing the piano again with help from my cochlear implant.  Recently I passed Grade eight piano.

I do have concerns that in Australia there is not a recognised qualification for people working in the deafblindness field.  The deafblind community in Victoria and some people from NSW and WA have gone into the class rooms from time to time to teach Interpreters who are doing their Interpreting qualifications.    Students learn about deafblindness, deafblind culture and tactile signing.  This is done by good luck rather than good management.   The deafblind community in Victoria have worked hard to teach the interpreting students to learn what it is like to be deafblind.  Sadly, the only full time Auslan Course at Kangon Batman TAFE has significantly been curtailed when the Victorian Government cut the TAFE budgets – and there is no longer a full time Auslan course for prospective interpreters and support workers for the Deafblind Community.

Our group, Deafblind Victorians, is the only group of its type advocating for and run by deafblind people.  Due to the lack of interpreting resources, we cannot give other deafblind people in Victoria and Australia the same opportunities as us.  It takes longer for us to develop our skills and confidence.  Due to the limited budget from DHS and OnCall interpreting, we cannot teach other deafblind people about Advocacy.  Both Deafblind Victoria and our national body Australian Deafblind Council are very limited and we feel our hands are constantly tied behind our backs due to lack of resources.  I want to recognise the wonderful support we get from SARU Self Advocacy Resource Unit.   Who helps us with administration, organising meetings etc.

Lastly will NDIS allow us to continue to advocate to Government State and Federal?  I heard there is no money for self-advocacy under NDIS?

Will the people who will run NDIS HAVE the skills necessary to understand about our special needs and communication barriers faced by the deafblind community?  This cannot be done by someone sitting behind a desk in Canberra and not understanding our special needs.

I know Mr Abbot have supported the concept of NDIS.   If government changes, will he continue to support the initiatives of NDIS?  Or will they dismantle the NDIS?

Thank you for listening to us today, and please feel free to ask us questions.

Photos courtesy of Mark Graham and are copyright of the Department of the Prime Minister and Cabinet.