Today’s topic is a hard one. Because it touches on something so ingrained in anyone with chronic illness that we often don’t notice it until someone points it out: internalised ableism.

And once we do receognise it, we can see its origins: growing up in a society that is so wilfully blind to our needs, we don’t even see it.

Until we do see it, and we notice the stairs and absence of a ramp, the lack of public transport and the inaccessible toilets.

And as writers, we see the word count challenges, daily writing groups and ways publishing has been closed to anyone who can’t travel for book tours, doesn’t have the capacity for certain deadlines and basically anyone with “different needs”.

I used to say: ‘Of course it’s not open to me. It makes sense. I’m in a unique situation. I understand they can’t make exceptions for me.’

Internalised ableism teaches us to adapt quietly instead of asking for change. But awareness lets us shift from accepting exclusion to expecting access.

So now I say: ‘Why is it not open to me? I’m not exactly in a unique situation. There are millions of us out there. And even if I was the only one, why can’t they accommodate me or meet me a little closer to halfway at least? It’s not like I’ll ask for a Ferrari and a villa by the sea. All I would like is to be treated as a human of worth. Because I am.’

And so are you.

Realising this changed everything for me. It didn’t make the world instantly accessible, but it did change how I approached it.

And so, when NaNoWriMo still existed, I was rather loud about how Ableist it was. I even organised a spoonie version of NaNo with tiny daily writing exercises, and it was awesome!

That experience taught me something important: this is how we take a seat at the table. We demand a chair and then do things our own way. We lead by example.

It may sound scary, because it takes confidence to see we belong everywhere and to channel the courage to use our voice. But it is so worth it.

So next time you catch yourself thinking ‘Oh, this isn’t set up for me. Oh well…’, take a beat and notice your reaction. Then realise this isn’t right, whether it was intentional Ableism by them or internalised within you.

Then speak up. Whether to the person involved or by deciding to do it your way, like I used to do with NaNo.

Even internalised and unintentional exclusion is harmful. Perhaps even more so, as not even being considered makes us feel even more isolated and invisible. Let’s end that together by standing up for our needs, and reminding the world (and ourselves) that they (and we) matter.

So what does speaking up look like in practice? Here are a few ways you can do that. Perhaps start by explaining your situation and then…

• Ask for a tentative deadline instead of a strict one

• Create a different goal for yourself that feels equally meaningful or challenging

• Break big goals (like “finish this chapter”) into smaller milestones

• Form your own group or challenge with others who understand energy limits

• Request flexible participation. For example, submitting asynchronously or without getting on video so you can participate from your sofa or bed.

• Ask for accessibility details upfront. Don’t assume something is out of reach or that you’re asking for ‘a lot’. Often it is not malice, but unintentional ignorance of a situation outside of their own lived experience.

• Offer your insight as valuable feedback: ‘Here’s how this could be more accessible next time’.

• Take breaks without guilt and remind yourself rest is part of your process, not a failure

• Celebrate your adjustments as acts of creativity, self-worth and resistance; not as a compromise or failure!

And the most important: always do it on your terms. Because your needs deserve to be met too.

Sandra Postma
Writer | Coach | Speaker