NDIS - How to talk the talk!

It seems we have forgotten the National Insurance Scheme is not about money, not about care and it certainly is not a compassionate response to disability. The language used by some referring to the ndis is still exclusive of people with disabilities, society still makes it very clear we are less. 

We still have a charity model of care when it comes to disability care.  I am my own carer and don't need caring for.  My worker was highly insulted by this information on Saturday.  Yes there are times in my life I need care.  Like during and after a seizure or the care we all need during period of illness. The whole point of developing the ndis was to exit the previous medical model where people with disabilities were made to feel like patience. 

Many times I have share on the human rights issues that help us see our response to meeting the support needs of people with a disability need to be revolutionised. The ndis is meant to turn our thinking about the issues that needing addressing in the lives of those living with disability.   Instead of looking at the disability the  ndis was to look at the individuals hopes and dreams and what they wanted for the future.

The ndis plan is now based on the goals of the participant or what the families hopes are for the participants they carer for.  Care is now the primary the responsibility of a legal guardian not the government, in my case that is myself. Supports now ideally empowering families and individuals to live a quality of life, Through enabling the participants to chose their own supports and this was my planning experience.

The ndis planning process engages with participants and families to choose how they would like to be supported to live full and rewarding lives.  In the lead-up to the induction of the ndis there were concerns that people with disabilities do not have goals.  'Goals' was a the term chosen to describe the activities that participants chose to engage in, with the focus on what individuals  enjoying doing. 

The trouble is we live in a society that perceives the lives of people with disabilities are very different to others.  People with disabilities are outsiders that live on the fringe of the community.  This is not correct and certainly not the vision we wanted the ndis to project. 

In setting out your participants goals in the ndis plan becomes a  powerful statement about who the participants is and how they map out the future.  

My goals . . . I am an visual artist residing in Ipswich, my goals are to extend my visual art practices and to purchase equipment to enable me to work effectively in the arts community.

So my plan is about taking place as an equal in the Ipswich community and making a equal contribution.  Their is nothing in these goals about disability.  The only hint to my support needs is the purchase of equipment.

In my experience the way we engage with our planner and the language used through the planning process very much empowering process. Light years away from the system we have come from where the opening statement read more like this.  as a middle aged woman with cp, epilepsy and depression needing care to be protected from the risk of death in the home, if intervention is not received. 

As you can see language can both empower us and dis-empower us.  While the language of the ndis is very empowering it is those who refer to the ndis using terms of old care model that puts at risk the reform agenda in terms of human rights.  The trouble is those not well verse in the ndis language use terms that may not be relevant in the ndis environment.

In the past I have alluded to the general community being ill prepared for the human rights reform component of the ndis. Many who have little contact with people living with disabilities still very people with disabilities as fringe dwellers. This is not the inclusive participation model that the ndis and our planners embrace. The general public perception is we are grouped as individuals, not a group of individuals. This I think is the distinction the ndis has the potential to make.

Despite the intention of the speaker, the language and the words other chose when referring to people with a disability impact the way we view ourselves and others. 

They way my support workers are address by others in the community demonstrates until now, how  the previous care model of assisting people with disabilities has distorted the truth around the image of disability society has created, For example my workers are often asked if they are 'looking after Deb today?'.

No! is the response, I work for Deb and she directs me to how she needs me to assist her.  Look after Deb?  She looks after herself, better than I look after myself.  Others workers, look to me as a mentor, teaching them how to work with others in the community. 

In terms of he organisation who currently provides my support needs, their workers are refer to personal care attendants. This is very old school term no longer used widely in the disability sector. Those still referring to themselves as carers are unknowingly still reinforcing our dependency on others.  It is now our collective duty to empower people with disabilities by the language we use. 

Changing the way we talk is essential for ensuring the ndis is successful in assisting to install human rights for people with disabilities. Otherwise it runs a risk of becoming just a name change, we are no more equal to others, than we were under the last system.

This is a fear many people living with disabilities have held since the beginning and why advocates like myself endeavour to hold the government accountable for ensuring the foundation principles are maintained. A fear that surface in my own min at  the opening of the NDIS office in Ipswich. Where language being used by some speakers, left a feeling of dread in me. 

Here people with disabilities, there families and carers were referred to as 'less fortunate'. On the very day the ndis was to give us equality. I cringed with fear, ever time word 'less' was used. I wanted to cry, (but it was my turn speak next).  My messaged was my life matters, all I could do was express my disappointment that these words were still being used on a historical occasion.  I long for a day where these words were not used to refer to people with disabilities.  

Families and carers are only heroes and martyrs because that is the role successive governments have imposed on them.  Those with disabilities are inspirational if they have the determination and courage to demand they be treated the same as others.  How sad it is that we remained viewed as less so the disability sector that fails to dispel a charity message. 

The challenge before us is to become inclusive in our language when we are championing the ndis. You may of noticed when I talk about abled-bodied and those with impairment I will use a collective 'we' to identify with a particular group.  

We need to learn . . ."  This said 'I am included',  I too need to be more aware of how my words includes others.  When I think about the social model of disability and being disabled by society not our impairments, labels and language can be so disabling.

My pet hate is people feeling sorry for me . . . poor you!  Once again these people only see what they think is broken.  Something is only broken if the owner decides it is broken.  The owner of this body just goes out and grabs life.  

Often the delivery is the opposite to what was intended my the speaker. A person I highly respected in my life said, with my intelligence I could of done anything.  Even this statement made me feel I was less. I bravely said, but I am doing what I love.  I am passionate about art and advocacy, only a few people every find the true calling and I get to do the two things I thrive on everyday.  For me this is the riches gift I can have when many search in for happiness, 

Language can either embrace  or put up barriers.  If we don't learn to talk the talk the ndis contribution to building the rights of those living with disability is comprised. 

Please join me in talking about disability in an inclusive way. You can begin doing this by sharing my post.