Speech to the Nursing and Midwifery Advisory and Leaders Forum
November 29, 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 Kaurna land.
Before I begin, I would like to tell you a little of my journey of advocacy and something about my party and my work in parliament. I will then lead on with a few thoughts about our health system, and I hope this gets you thinking about what you can do to improve the lives of people with disabilities, and how we can play a part in creating the inclusive future we want.
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, and I will be up for re-election in 2018.
I guess the context of my remarks today is, very simply, that people with disabilities require treatment across their lifetimes for all the same human body issues as everyone does.
I tell a tale now, of how it feels to be misunderstood in the public hospital system, and it’s a story from a couple of years ago now.
A young woman, travelling as a passenger in a car and perhaps unadvisedly drinking a hot beverage turned a corner and came to grief.
The driver responded quickly to the issue of hot burning coffee on the woman’s legs and they attended a large metropolitan accident and emergency department.
At first, staff assumed it was a very serious burn, because the woman could not walk, and was carried in.
It didn’t seem to matter that she explained to staff that she doesn’t walk. She was not listened to.
In being triaged and assessed, the young woman was repeatedly told by one nurse that she was going to insert a catheter.
It didn’t seem to matter how many times the woman said that she neither used nor wanted a catheter, not now – not ever, the patient was not listened to, as the nurse vehemently persisted.
The car driver was eventually able to dissuade the nurse from her stated course of action.
This highlights another issue, when the patient with a disability is ignored in favour of conversation taking place with an accompanying person – as if that person’s opinion is somehow more valid, their voice more worth listening to.
In that nurse’s mind, it was clear that [in a voice] this young woman would need a catheter because she was a wheelchair user.
Well, I discuss this patient’s experience with you today with her express permission, because I can reveal that I am the woman with the scalding coffee in my lap. [beat]
I can also reveal that the hospital was the RAH. The monumental frustration of having to deal with a health professional who would not listen, did not understand and showed me no respect was the last thing I needed at that time.
And yet I not only have a voice, to express my lack of consent in that situation, I also had a trusted friend with me.
People with disabilities, are people. And we come in many sizes shapes and colours and an endless combination of personal characteristics, just like all people do.
We still have such a long way to go when people call up talkback radio and ask ‘why should I have to pay for someone else’s kid’s wheelchair?’
Of course in saying this they are forgetting that tomorrow they themselves or their own child could 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.
You probably know that the disability rate across the general population is twenty percent (20%) and that we will see this increase with our ageing population.
People with a disability are more likely to come to hospital, for surgery or therapy to possibly improve their outcomes – I had surgeries to help with my Cerebral Palsy as a kid.
Four point three percent (4.3%) of children – just over half of all children with a disability – have an intellectual or learning disability.
Increased diagnosis of Autism and ADHD is a significant factor in reported childhood rates of intellectual/learning disability.
Although Autism and ADHD aren’t what we’d automatically define as an intellectual disability – because [breath] clearly many kids with ADHD aren’t intellectually disabled – their IQ is well above 70, [breath] just as many people with Aspergers Syndrome have behavioural difficulties, social awkwardness and trouble with certain types of intelligence – for example [breath] reading and writing – but may have incredible skills when it comes to mathematics and drawing.
As an aside, I heard a quote recently, that “when you have met one person with Aspergers…you have met one person with Aspergers,” and of course it is a dangerous thing to generalise about these things.
As I mentioned, we are all individuals.
I want to see a health care system that can more than cope with differences such as these, with disability, with sensory overload, in a respectful way.
I want our system to be out and proud and open about offering the type of positive and re-assuring attitudinal support that people feel valued and respected.
I don’t want anyone to feel, as I did on my visit to the RAH, that they can’t get the understanding they need when they are involved in accessing services. And providing this positive re-assuring attitudinal support rests with all of you, as practitioners in our health care system.
All of us want an affordable, modern healthcare system that delivers a timely service that the community can rely on – no surprises there.
However, what I remain astounded at is that missing from the Transforming Health approach, and it is just a timeless principle really, is that prevention is always – ALWAYS – preferable – and more cost effective – than cure.
Of course, we’ll never prevent all injury, illness and chronic disease but with quality primary health care we know we can most certainly decrease the burden on our acute health care system.
Dignity for Disability also believes that having healthier people includes considering their mental health, including children’s mental health, and I have to say we were very disappointed to see so little about mental health included in Transforming Health.
In health we need to recognise the incredible gains to be made through fostering a broad, collaborative effort across multiple medical specialties in medicine.
We’re living in an exciting time of innovation that should be leading us to novel research and training opportunities, recent advances in neuroscience alone have wide implications for so many areas of health and human discovery.
Just as the broader health system needs to engage in a cross-discipline holistic program of planning and implementation, from my perspective, I see that the overall ‘system’ – whether it be health, disability, education, transport departments, still tend to wait to respond to crises – rather than getting involved and planning holistically for the best outcome for the person with disability and their families – and in the process it costs us, the taxpayer far more than it should.
I am contacted daily by people in crisis – often due in part to the disproportionate chunk of their lives people with disabilities spend battling bureaucracy just to gain fair access to the world.
My primary goal is to make myself redundant…and this goal will be reached when having a disability in South Australia no longer constitutes a full-time job. In every sense, I exist as a member of parliament to ensure that we get the paradigm shift both within government and the broader community that results in a deep understanding of what it does… and does not mean to live with a disability, it’s about breaking down those attitudinal barriers.
In closing, it seems that even with the best will in the world, many people involved – including within the health, community and disability sectors – do not respect the rights of people with disabilities.
The personal is political, I think there are three keys to getting it right: “fairness, innovation, and respect”.
Fairness because we all deserve a fair go.
Innovation because we need to find the synergy of creative solutions, and respect because it doesn’t matter whether or not you can help someone, giving them respect means we can all hold our heads high. We are all in this together, and as active participants in our community, whether we are leading or following, I hope we can take every opportunity to set ourselves the highest standards.