Written by Tammy Milne – PDA TAS Director
I am feeling my age. I am 59 years and for 59 years I have been disabled.
I have seen attitudes change when it comes to people with disability. Mostly for the better, but there is no opportunity to rest. The teaching and learning must continue. Each new generation that comes along must be handed down the history and learnings from the previous. It is hard to move forward and very easy to slip backwards. Rights are earned and must be continually justified and that’s hard.
Our work as people with disability is never done. We can never stop advocating and reaching for equality.
We can never forget that only 30 years ago people with disabilities were locked in institutions. Were locked away from society and treated with either fear by the general public or infantilised by those who cared for them. Their rights stripped from them. Many fighting to be released back into the community that they so rightly belong in. Some still fighting now to be released from nursing homes where younger people languish under horrendous guardianship laws.
The language around our community 30 years ago was insulting, humiliating and used to put us down. I cannot to this day say that those word have been removed from our vocabulary, but I can say that there is growing awareness that they are not appropriate and must not be used to weaponise and hurt us. One wonders at the motivation of those who use the words in these ways. Is it based on a lack of education or empathy?
The unemployment (or underemployment) rate of people with disabilities has not improved in 30 years. We are still undervalued as workers. There is still a lot of celebrating of employers who, as part of their PR building exercises, employ people with disabilities in a bid to appear more evolved and equitable. It’s a shame because business and Government agencies are missing out on our expertise in terms of our qualifications and skill sets and also our understanding in our field of disability. We know disability from our own perspectives and this should be valued and our knowledge and experiences utilised.
Why is it that so many agencies, businesses and our own Government departments have made an industry out of disability and yet we are not at the forefront of these endeavours? We are not in middle management. We are in management, and we certainly don’t run the organisations in many cases. This amplifies the hollowness of the words in our battle cries for equality, “nothing about us without us”.
In February 2020, $32.7 million was awarded to 28 grants across Australia to provide three years of funding for activities that will provide people with disability pathways to meaningful employment and yet statistically we are still not moving forwards.
With funding for ILC (information, linkages and capacity building) grants in the millions of dollars awarded to not-for-profit organisations, it is not disabled people who are running these organisations they are just the justification for the work. Once again, I see the theme that we need to be helped, handfed and paternalised rather than lead. One organisation has a lead program, but the real tangible outcomes from this are minimal. No real improvement of the live of disabled people just a lot of busy work.
Yes, we are often on the boards of these organisation in a nicely curated ratio. We are employed as “lived experience” consultants for co-design projects, yet we don’t drive the engine – we are merely the trailer attached to the bus that drives the industry.
This day though does come with some pride when I see the achievements of our community, our real community, people with disabilities just out there doing their thing. It gives me such hope when I go out and see disabled people like me out there too. Technology has meant we are OUT now, in our wheelchairs and on our scooters. Using our mobile devices to communicate, using our support workers to do the heavy lifting so that we can be seen and so that we can challenge inclusion.
The NDIS has been revolutionary in the lives of disabled people and for this we must be proud of our nation and a government which has seen the value in equity.
In my role as PDA’s Tasmanian Director, I am part of a national wide disability organisation that exists with just three paid part-time staff members and a board of actual disabled people. Our work output is phenomenal in comparison to other much larger organisations. We run webinars that are presented by volunteer board member and feature topics that are real to our community. We have a monthly online social gathering to actually build community and respond to people and issues that affect us and also provides some fun and a chance to socialise together. This is what a small, dedicated community in an organisation can do. Perhaps there needs to be a look at what ‘work’ the others do. I seriously have issue about reporting to the Department of Social Services and these needs tightening up. I know my small organisation does the work and goes over and above.
This year our day of celebration, reflection and recognition fell on a Sunday which meant that it was fairly quiet across the nation. My own local group is meeting for a picnic and yarn this week at a local park. The day we are meeting falls on Human Rights Day which is quite poignant, because we must never forget that disability rights and human rights are the binding principals that have seen us achieve so much this far.