Asynchronous communication advocacy

I’m planning to document and collate more of my advocacy on this site. Mostly so that others can use my words as a template to save them energy (though my words are never perfect nor are they the only words you can use). I’ll collect the links on one page eventually but for now they’ll live in scattered blog posts like this one.

 

I live in QLD, and apparently the state government has contracted a disability organisation to consult on “significant disability reforms”. Unfortunately the sessions are all two hours long and that’s too long for my capacity these days. Last week I had a flare from a one hour conversation. I really need people to respect asynchronous communication needs – and more than respect it, offer it as one of the default options.

 

I wrote the following email to the organisation:

 

Good morning QDN,

I have signed up for one of your Community Forums but I was wondering if you had any different sessions or asynchronous / more accessible ways to participate?

A two hour long sessions is a large cognitive load for me and risks me being bed bound for days to recover.

Kind regards,

Vanessa Smith

 

I’ll keep you updated on their response and what the outcome may be. To be honest, after last week the last thing I want to be doing right now is advocacy. I just want to be included. Especially by disability organisations; rightly or wrongly, I’m tired of having to ask to be included in disability (not an issue limited to this situation!).

 

Update:

There was a bit of back and forth. It was suggested that I come along to an in-person session, though I am unsure how an in-person session lowers cognitive load. I hadn’t realised at that time that I hadn’t mentioned being housebound in my original email, so I mentioned that. It was also suggested that a report will be written after the forums and I could read that – I did not like that suggestion as that is most definitely not including my voice in design!

 

Part of my reply to that:

Given the page talks about these sessions and QDNs role as being part of significant disability reform, I’d really like to be involved. I’m unable to get NDIS and so far all state disability services have turned me away for my support needs, so (lack of) QLD state disability supports have a direct and significant impact on my life. 

 

In the end, they offered to send out documents ahead of time. I agreed to that, thinking if I had background info absorbed beforehand it would lessen the cognitive load in one session. 

 

Unfortunately, it did not turn out to be very useful. There were two main parts to the session. Introduction / background and then breakout rooms on a topic. The documents sent were on the breakout session and not the background info.

 

Unfortunately (again), the topic was not something I could specifically contribute to. It was 0-9’s early intervention support. A very important topic given the kids being kicked off the NDIS before foundational supports exist, but not one I am qualified to speak on. I raised points where I could and suggested where they may apply to parents. Sorry to parents, I had to make guesses and assumptions. My main points as usual are around improved attitudinal knowledge of disability in society, intersectionality, a genuine no wrong door approach, and capacity building being a choice not enforced. I do not believe any of these were written down (more on that later). 

 

Lots of discussion was had on place making and local service hubs. And I don’t disagree with those, but I pointed out that these are often exclusionary to those who are housebound like me.

 

Rant: The nuances of this stuff gets lost in summaries – someone will leave out a detail (because details and specifics make “strategic leaders” uncomfortable, they want bland and generic to enact) and then when it gets implemented it gets implemented as “well the sessions said EVERYONE likes to do in person so you’re wrong in needing that”. Which has happened to me in 2025 already with a local organisation who won’t talk to me because I’m housebound.

 

Psychological safety needs to be more than a final slide with helpline phone numbers on it, not least because helplines aren’t disability trained and because not everyone can use phones. I forgot to include this point in my feedback to them. 

 

This is the feedback I gave (some of which was echoed in the wrap up by other attendees):

 

More info on the sessions beforehand – eg I could have contributed more to a session NOT on 0-9s – it was a waste of my limited and precious energy to contribute to this when people who are parents could have given you value – you need to let people know what the sessions are specifically about to make the most of lived experience to contribute meaningfully to the design. I would not consider this session meaningful codesign, it felt more like box checking.

 

More asynchronous options – pre reading so we can absorb info ahead of time and be prepared for discussion and suggestions. A first suggestion is not always the best suggestion. Meaningful codesign lets us bring the best of our experience to the table. A session design that is inclusive (not an add-on or non-centrally used method) for non verbal or non speaking people to communicate. Ideally, include completely asynchronous options. 

 

If you (QDN or funders or QLD Government) truly value lived experience, then pay people for that expertise instead of expecting people to volunteer that expertise.

 

Related reading: When does CoDesign become Consulting?

 

Support your breakout room facilitators better – give them a note taker so they can focus on facilitating. Not having a dedicated note taker meant points were missed and again, makes me think this is a box ticking and not meaningful codesign.

 

Promote this more. I am involved in disability circles a lot through my day job and I didn’t know these were going on. Don’t use euphemisms such as “significant reform”, call it what it is – consulting on foundational supports. Don’t hide the name under bureaucratic language. The people who will be using foundational supports are generally abandoned by all current systems and are not engaged in what’s going on in disability land – too busy trying to survive. You need to be more active in finding these “missing” people and making sure their voices are herad. 

 

Consider easy read formats for all documents. 

 

The end:

There’s lots of feeling like “the wrong type of disabled” in this. And I’m very damn sick of feeling that, most especially from disability organisations. I don’t know if I’ll engage with the sessions again.

 

I want my voice heard but the frank harsh truth is that I don’t feel like my voice was heard at all.