International Day of People with Disability is more than tokenism.

Today is international Day of People with Disability.

Australians will pin a blue and orange badge on their lapel, to show their support for inclusion and accessibility. Many will attend events (mostly organised by people without disabilities) just for the morning tea. I know - people have told me they only stopped by for the sweets. They'll hear people with disabilities talk, and for the most part, that speech will make a positive impact, perhaps even create meaningful change. Hopefully the speaker will be paid. Some people will feel uncomfortable by disabled people talking about ableism and inaccessibility - they're just attending to hear the Inspirational Stories. Some events will only feature figureheads - people in the disability sector or diversity stream of an organisation - speak about others with disabilities. Disability allies are encouraged to bake muffins, ice them in the themed colours and upload them to social media – to promote inclusion. (A muffin is delicious but it’s a big stretch of the waistline to call it inclusive.) The media will run with only one type of story – the inspirational. And I’m sure there will be silly games simulating having a disability – like sucking on a lollipop to hamper verbal communication.

Nothing about us without us, right?

I've sat through events where all sorts of euphemisms are thrown around - special needs, diffability, differently abled - even on this day, people (including those with disabilities) with are uncomfortable about the word disability. There's a great lack of pride in some pockets. There is surprise that disabled people are proud.

Sam Connor, disability activist feels the same as I do.

"This day is supposed to be about us. Instead, it's become about 'awareness' and everyone else - the congregate settings we are forced within, the industry called Disability Inc, Sam says.

"We don't need people to become more aware of us. We are here, claiming our spaces. We need the rest of the world to focus on how they're going to change to allow that to happen, to give us jobs, to help us uphold our human rights. And most of all, the day should be about Pride, disability Pride.

Until that happens, it is not our Day."

Sam and a dedicated team of activists have been doing important work in uncovering abuse in institutional and domestic care, ensuring the deceased and survivors are named and known via the White Flower Memorial. The White Flower Memorial website states "we collectively throw a spotlight on murder, violence, neglect and other practices which devalue the lives of all of us. We assert the right to life and dignity of the person under article 10 of the UN Convention on the Rights of People with Disability." This event, held last week, was far from the warm fuzzy morning tea people want and expect. The stories of the deceased are a sobering reminder that it’s not enough just to raise awareness one day a year.

Last year I gave a speech and was spoken over by a man who told me how he thinks I should feel. He told me how negative I was through the speech, and how important it is to be mainstream rather than marginalised (pitied rather than proud, perhaps?). He also told me that he feels the need to give me this feedback as a speech should go two ways. And to top it off, he made a rather indecent comparison to lewd criminal behaviour when empathising with what it's like to have a disability. I was taken aback by his response. I answered on my feet, to the whole audience. I said something like: "I think there is a perception that activists are negative when they share their and others' reality. The things I talked about happened to me. The statistics I quoted are real. I'm not going to gloss over them." This invalidation and speaking over me has happened a few times since that speech. (I haven’t inspired them enough.)

Fortunately I've been in and organised great events - sourcing speakers and speaking myself. Just this week, I spoke at a corporate event, listening to a proud Deaf man who spoke of the joy of being a part of the Deaf community, and an autistic man who's relieved he’s recently been diagnosed. I learnt so much about their communication styles and the reasonable adjustment they need to be the best workers they can be.

And tonight I'm doing a comedy piece in Quippings - a disability-led performance troupe. We are risky, sexy, funny and proud. And we are addressing real issues, making positive, inclusive change. This is how it should be.

This International Day of People with Disability, I hope for more than awareness raising and tokenism. I hope individuals and companies take committed action to tangibly improve the lives of people with disabilities. Don't just wear the pin today and do nothing for the other 364 days of the year.

Increase employment opportunities.

Prevent violence towards the disabled. Call out ableism, inspiration porn and unconscious bias.

Truly engage with the disability community when making decisions about us and planning events for us.

Ensure people with lived disability experience are named Disability Champions, not those without.

Listen to us when we highlight injustices. Really listen and don't speak over us.

Get us to tell stories instead of telling them about us.

Increase funding to disability services.

Provide the right support for families and schools to cope rather than resorting to restraint, segregation and even murder.

Ensure we are paid fairly. Follow reporting guidelines when covering disability in the media.

Ensure your events are accessible – physically, communicatively and attitudinally. See our Pride.

Make this day about us.

A version of this was published on Daily Life.