I feel like a hypocrite.
I call myself an advocate. I want to raise awareness around the needs of others, particularly in relation to invisible (or as I prefer, non-apparent) disability. I’ve learned how vital inclusion is and why accessibility matters so deeply.
And yet, a quick scroll through my Instagram grid will find faults abundant. Some posts don’t have captions. Some images are missing description.
If you are new to this space, captions aren’t just a feature for keeping the view count up; they were created for those who are hearing impaired. They’re an accessibility tool developed thanks to disability. One we all now benefit from.
When I Don’t Get It Right
Closed captions are important. And still, I have posts without them.
This may have cost me followers, but more than that—it doesn’t sit well with me. I consider it “wrong” to not ensure accessibility. But it’s also something I’ve had to learn to accept. I hope, by reading this, you’ll understand why.
Let me give you some context.
The Backstory I Didn’t Plan to Tell
I have a condition called Hypermobile Spectrum Disorder (HSD) and POTS (Postural Orthostatic Tachycardia Syndrome) and Reactive Hypoglycaemia, and… well that will do for now.
What this means: I can’t always do what I want to do. I don’t always have the ability to complete a task. In short—I have a disability.
Sometimes I can do the thing. Sometimes I can’t. And sometimes I can, but only partially, or not in the way I’d like. Not with ease, comfort or in a timely and effective way.
This is given the term dynamic disability.
There is very little in my appearance that will clue you in on this. It isn’t visible to the outside world. In other words, I have an invisible disability.
Why I’m Here
The connective tissue disorder that underpins it all, has been woefully neglected and is in dire need of awareness. Change in healthcare systems is needed now.
That is why I’m here. Despite my personal need to withdraw from social media. Despite having zero inclination to have any public presence, let alone one that divulges my personal medical details. Despite my preference to remain anonymous and invisible. I am still showing up and sharing my journey.
A large component of that requires I post on social media. Not because I think I have brilliant advice to offer. But because I intend to do everything I can to see meaningful change. For myself, for my family, for all of those impacted by this condition—for our society as a whole.
Progress, Not Perfection
I am learning as I go.
Getting it wrong as I go.
I’m not waiting until it’s “perfect”—we don’t have the luxury of time.
I will put out what I can when I can. Sometimes I will be able to tick all the boxes. More often though I can’t. I still try to convince myself that I can just try harder and I will get it right, that it isn’t that hard.
But then, it is not so hard to walk across a room—until you cannot.
The Invisible Things You Don’t See
I certainly didn’t expect captions to feel like such a hurdle. But some days, even basic tasks become mountains.
It may be that I am experiencing hypoglycaemia sending my glucose levels dangerously low and therefore impacting on my cognitive ability to complete the task. I then have to decide—while flailing through a foggy brain:
Post so it is done?
Or wait to get it “right”?
To begin with, I was deciding to wait.
But the lessons learned from that approach now lead me to post without delay.
Or risk losing it all to the backlog abyss of tasks-to-return-to (whenever that illusive day of clarity and capacity aligns). I know what I want to do, just as someone who is paralysed may know that they want to move their limb. It simply doesn’t work like that.
For me, if it isn’t the reactive hypoglycaemia, it may be the POTS impacting on blood perfusion to my brain. When it’s not the POTS it may be the structural laxity in my body impacting on cerebral flow and therefore cognitive ability. If not that then perhaps the fatigue that comes from having an energy limiting condition. Or the distraction of pain. Or the side effects of the medications I need to function. It could be that my fingers, shoulders or neck are just too impacted to continue on. Maybe my vision is acting up, complicating things as they notoriously do, especially with screen-based tasks. If not that… well I think you get the point. There are plenty of invisible “reasons” that I may be struggling against.
You wouldn’t see any of this. But I feel it—all of it.
I have to choose: Perfection or good enough?
I choose to show up—flaws and all.
The Alternatives I Try to Offer
This is why I created a podcast titled “Get Living (wrong) With Me!”
Because that’s what I’m doing—sharing my life, in all its messy truth. Embracing my reality, who I am, and what I can offer, regardless of someone else’s (or even my own) judgement.
Still, the concern lingers. I don’t want to overlook accessibility. It matters. That’s why I offer different formats:
- This blog, for one
- The podcast may be more enticing for those with visual challenges
- Social posts in a mix of text, visuals, and (when I’m really smashing it) both!
I hope individuals have access to tools that help them engage with content in the way they need. But ultimately, accessibility shouldn’t be an afterthought.
Accessibility should be factored into everything—from the start, not as an afterthought but just how it is because that is how our world is. It is wonderfully diverse and all of us deserve to be included. Accessibility should be the default because disability is a part of life.
We All Benefit from Accessibility
Captions, ramps, lifts, voice-to-text—they were all designed with disability in mind. But we all use them.
I’ve watched videos on mute and been grateful for captions. You’ve likely used an elevator. Maybe you enjoy all the voice commands that we now utilise in our everyday lives.
These are just a few examples that are a direct result of disability-based developments and accommodations. Often hidden parts of our daily lives.
These supports don’t just assist a few. They make life easier for all of us.
A Final Ask
I don’t want to be a hypocrite.
I do want to get this right.
But sometimes, my desire outpaces my capacity.
So, I ask—crude to do so or not—that you stick with me, even when I get it wrong.
Because I’ll keep trying. And I hope we can grow through the imperfections together.
With hope and thanks,
A.K. Huntington
Find out more and support national level change within Australia via: Homepage – Connective Tissue Disorders Network Australia (CTDNA)
Globally in relation to HSD (Hypermobile Spectrum Disorder) at: Home – The Ehlers Danlos Society
A.K. HUNTINGTON 
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