International Day for People with Disability – What it Means to Me

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 backward. 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 that 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 can not to this day say those word have gone from our vocabulary, but I can say that there is growing awareness that they are not appropriate, to weaponise those words to hurt us. One wonders at the motivation of those that use the words this way, is it lack education or empathy.

Unemployment or underemployment rate of people with disabilities have 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 exercise employ people with disabilities to look more evolved and equitable.

It’s a shame because big business, government agencies are missing out on our expertise in our field of disability, we know disability from our own perspectives and should be valued in our knowledge.

Why is it that so many agencies, business and goverment 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 organisation is most cases. This makes the words so hollow in our battle cry 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 still statically we are not going forward.

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, hand fed 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 but 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 our scooter. Using our mobile devices to communicate, using our support workers to do the heavy lifting so we can be seen.

The NDIS has been revolutionary in the lives of disabled people and for this we must be proud of a nation and government who has seen the value in equity.

I belong to a small national wide disability organisation with two part-time paid staff members and a board of actual disabled people. Our work output is phenomenal in comparison to other much larger organisations. We run webinars totally solely by volunteer board member of topics that are real to our community. We have a monthly online social gathering to actually talk to our community and have some fun and be 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 is on a Sunday which means it’s fairly quite across the nation. My own local group is meeting next week for a picnic and yarn at a local park. Next week the day we are meeting is Human Rights Day, which is quite poignant, because we must never forget that disability rights and human rights are the binding principles that have seen us achieve so much this far.

Tammy Milne is a deaf interpreter, a community activist in various fields and a person living with Arthrogrophosis Multipex Congenita.