Thalidomide Conference

Speech to Thalidomide Conference
October 22, 2016

Thanks for inviting me along today.  I’m Kelly Vincent, Dignity for Disability’s member of the Legislative Council.  I acknowledge that we meet today on the land of the Kaurna people of the Adelaide Plains, and welcome those of you who are visiting Adelaide.

Before I begin, I would like to tell you a little of my journey of advocacy and something about my party – Dignity for Disability – and my work in parliament.    I will then lead on with a few thoughts about the barriers to inclusion in our justice system and employment for people with disabilities, and some social media action ideas.

Dignity for Disability is a small, South Australian based political party and I am the sole elected representative so far.  We hold regular fundraisers to support our election campaigns.  I will be up for re-election in 2018.

Since I was elected to Parliament in 2010, I have been inundated by constituents seeking advocacy on every issue you can imagine – mostly relating to disability in some way.

I should point out that my work covers the complete range of portfolio areas, and because I am an upper house MP, I represent the whole of South Australia.  It is a huge workload, managing the parliamentary commitments, constituent matters, invitations to events – and at the same time keeping an eye on the horizon for the future policy development that we need to create ongoing, positive change.

Politics wasn’t the career I had planned for myself, but landing in Parliament House at the age of 21 has been an amazing opportunity – for me – and I think (and hope) for furthering a much wider awareness and understanding of disability issues.  I feel honoured and privileged to continue my work with Dignity for Disability towards improving the lives of South Australians with disabilities.

As I mentioned, because I am a member of the Legislative Council I represent all South Australians, I regularly get calls from people requiring advocacy on issues, advice around legislation or policy, or other broader systemic matters surrounding disability.  These could include viewing matters through a disability lens in health, transport, housing, the justice system, discrimination, employment, education, disability services, planning and universal design, and well pretty much anything else you can think of.

Advocacy and my wheelchair are inescapable parts of my identity.  My wheelchair gives me the freedom to be mobile of course – but is also an essential part of the story of how I became Australia’s youngest female MP.

Unbeknown to me at the time, my political journey began when I started a campaign of advocating for a new wheelchair.  I was 20 years old and was still using the same wheelchair I’d had since I was 10!  And like most people, I had done a fair bit of growing between 10 and 20 years of age – and my wheelchair was way too small and it was causing me problems because of this.

Although Disability SA were fully aware of my need for a new chair, I had been waiting more than two years and I just got fed up.  I was constantly having to monitor with Disability Services when I might finally get my adult wheelchair.  So, I took the action of setting up a campaign on Facebook and all of a sudden people from around Australia and the world were interested – including David Bevan and Matthew Abraham from our ABC Adelaide radio, and I became a bit of a regular on their program – telling their listeners the latest update in my wait for my wheelchair.

In every sense for me, the personal is political.  Because it is action that takes us beyond our words, beliefs and thoughts to lead us to become that more respectful, fair, just and equal society we want Australia to be.  And it was through this wheelchair campaign – where I was not only advocating for my own rights but also for the rights of my peers – that I was approached by Dignity for Disability to stand as a candidate in the 2010 election.  In unexpected circumstances I was elected becoming something of an “accidental politician”.

I’ve seen some great changes for the disability sector in the six and a half years since I was elected.  Australia now has a National Disability Insurance Scheme, or NDIS, being rolled out.  I have been proud to play a pivotal role in creating SA’s Disability Justice Plan as a way of giving a voice to people who were voiceless.  Parliament has had an enquiry into the experience of students with disabilities in the education system, and slowly things are changing.

So in some ways, the human rights of people with disability as equals alongside their non-disabled peers in the community are being recognised.

We have to start somewhere, and take small steps, but it is clear that we still have such a long way to go.  And I say this because people will still call talkback radio and ask: ‘why should I have to pay for someone else’s kid’s wheelchair?’, forgetting that tomorrow they themselves or their own child could so easily become members of the “disability club” – becoming dependent on others for their showers and personal care for the rest of their life.  That’s the reality of it, and of course it makes me angry that such attitudes still exist.

Because I want to see a community that can more than cope with differences – (or “diversity” to use the current buzzword), I want our system to offer positive and re-assuring attitudinal support that makes everyone feel valued for the role they play.  I don’t want people to feel that they can’t get the understanding they need when they are involved in accessing services.

Advocacy to me is a form of literacy, and it’s something that matters a great deal in my work with my constituents.  Having some knowledge around what to do when things are not right, [beat] you could think of it as “complaint literacy” if you like, is really important [pause] and it’s become clear to me it’s not something that everyone knows how to go about.

As an aside – Personally, I had an excellent role model, in the form of my mum, Colleen.  The skills she demonstrated every time something was not right, are pretty much the advocacy skills I practice daily through my work.

The NDIS really is a “once-in-a-generation change”- just like Medicare was in the 1970s – and can any of us imagine an Australian health care system without Medicare?  The NDIS promises a great improvement to the lives of all who have or will have disabilities in the future.

There’s a role for advocacy around the services that people will be eligible for under the NDIS, and we are already finding benefits for those clients who are well prepared before they go into their first planning meeting – because it’s become clear that you need to know what it is that you want, and [funnily enough] that’s not always as easy as it may sound.

We know that the NDIS cover-all phrase is to provide what is “reasonable and necessary” to the individual to help them manage their disability in their home and the community. I’ll talk a bit more about my work and come back to the NDIS later.

I think one of the proudest moments for Dignity for Disability was being able to lobby for the establishment of South Australia’s Disability Justice Plan.  We know that other states are closely watching SA now to see how the implementation phase is going before following our lead.

The new Disability Justice Plan will transform the experience of people with disabilities.  And, I think it is fair to cite it as an example of what policy and law reform needs to look like if we are to create a paradigm shift in thinking and prevent violence against people with disabilities.

We are changing the way that people with disabilities are treated in the justice system in South Australia. …and we hope this goes some way to preventing violence against women and children, in particular, with disabilities.  No longer will people with complex communication needs be silent victims of abuse.

The South Australian justice system changes provide for Communications Assistants or Communication Partners for people who need it.  This could be someone with a communication disability, an intellectual disability, cognitive impairment, or with an alternative communication method.  For example, evidence from a child with autism who uses sign language to communicate will now be admissible in court.

It means that a person who needs a speech pathologist, or other trained professional, to support them in court – and this would be the same case whether that individual was a victim or an accused person – will also be able to access them as a Communication Partner.

Often, when I talk to people about this – and other changes to the justice system resulting from the Disability Justice Plan – they are pleased that the changes have occurred.  But they tell me they are really shocked, that something so obviously necessary, and seemingly so simple, was not already in place.  What it took was strong, persistent advocacy to get this big change off the ground.

So, turning to some political action ‘how to’

Wherever you live, you have local council, state and federal representatives or politicians who represent you.  Don’t be afraid to get in touch with them!  Many people who contact my office say they have never approached an MPs office before, yet MPs all have staff and resources to help people.  Sometimes the help we offer is to refer people on to other services, and for the cost of a phone call or an email we can help people tap into government and community resources that they just may not realise are there for them.  If you do contact your MPs office and they tell you it’s a local council matter, it’s because our system of government is pretty complex and to an outsider it can be hard to get your head around which jurisdiction governs a particular aspect of law.  Put simply – just ask.

And a word on social media/petitions…

An article in the Sydney Morning Herald states that in 2015, a staggering 3.4 million people signed or started an online petition through change.org. That’s one in seven Australians, I know I signed a few.  So although as individual citizens we don’t always sense that we have the power to change the way governments and big corporations do things, it is plain that we now do.

This is quite a list, but I want to share it because I think it shows the breadth of issues people care about, and want to take action on.  I’m going to read these out – because I think it’s amazing, it’s really citizen power!

Here are the 10 biggest victories for Australian online petitions in 2015.

  1. Wonder drug approved

Over 170 thousand people supported Shane Raisher’s campaign to have a melanoma wonder drug listed on the PBS.

  1. Victims of crime compensation

134 thousand supported Katrina Keshishian, a gang-rape survivor, to petition the NSW Attorney-General to reverse a decision to withhold victim of crime compensation, benefiting 24,000 people.

  1. Let my son stay

Maria Sevilla gained the support of 125 thousand for her son, Tyrone who has autism, to stay in Australia rather than be deported to the Philippines because his condition was deemed too much of a financial burden.

  1. Domestic violence education

Following the death of her mother, fourteen-year-old, Josie Pohla had 100 thousand sign her petition for domestic violence prevention lessons to be included in the school curriculum.

  1. Credit card surcharges

Klaus Bartosch, gained the support of 90 thousand signatories to cap credit card surcharges.

  1. Bronwyn Bishop axed

Adrian Barker, persuaded 88,000 people to call for the removal of Bronwyn Bishop as speaker of the House of Representatives. While ultimately it was not the petition that brought her down, it added to the pressure on then prime minister Tony Abbott to axe Ms Bishop after her $5000 taxpayer-funded helicopter ride to a Liberal Party fundraiser in Geelong.

  1. Controversial judge removed

petition to remove a NSW judge who suggested there was “nothing unnatural” about incest and compared the crime to homosexuality, received 70,000 signatures. A Judicial Commission later removed District Court Judge Garry Neilson from hearing cases involving sexual offences.

  1. Brothers in arms

68 thousand people got behind Nona Westenrieder’s petition asking Queensland’s Disability Services Minister to fund the care of her four severely disabled brothers who were being forced into a group home because the government refused to pay for them to be cared for at home by their parents.

  1. Suicide training for emergency staff

Grieving Brisbane mother Kerrie Keepa received 66,000 signatures on her petition calling on the Queensland Health Minister to urgently implement specialised training for emergency department staff on how to recognise and respond to suicidal patients, after her son Chris was turned away from hospital with multiple self-harm injuries. He died 11 days later. The Queensland government agreed to introduce the training.

  1. Pay rise for the Australian Defence Force

Tony Dagger, of Sydney, asked the federal government to reconsider a proposed Australian Defence Force pay rise of 1.5 per cent that did not meet inflation. 65 thousand people signed the petition. The pay rise was actually increased to 2 per cent.

I would say that this is an amazing array of concerns that people have sought support on.  They have started with one small step.  If you want to get action, there are some good tips on the change dot org website so you can get great guidance there from people who can help you get the best out of this format.