I was recently involved in filming for an upcoming healthcare symposium exploring the power of partnership, shared decision-making, and genuine patient engagement. What I particularly appreciated was that the partnership didn’t just start when the cameras rolled. From the very first briefing, I felt included, listened to, and my opinion was genuinely valued. Rather than simply asking me to share my story, the organising team actively sought my lived experience to help shape the session itself.
But as is so often the case when living with disability, the reality of showing up to deliver that message required a massive, invisible effort behind the scenes.
Ahead of the shoot, I spent two half-days scripting and preparing my responses. I am so grateful I did. By the time we actually began filming, forty minutes had already passed just setting up. I was shifting equipment and moving lights around to make sure the shot was good. The sheer physical toll of that waiting period meant that by the time the director called action, my brain fog had rolled in. Without those tightly prepared, scripted notes in front of me, I wouldn’t have been able to formulate my answers at all.
Even the mechanics of the shoot itself presented hidden hurdles. I had to position myself to stay perfectly in the centre of the frame, which meant I couldn’t lean back to support my head. It was uncomfortable, exhausting, and physically painful.
This is the tightrope so many of us with invisible disabilities walk every day. You want to get your message across in those precious few minutes. You want to contribute to vital conversations around holistic care, multidisciplinary collaboration, and sustained patient engagement. Most of all, you don’t want to be a burden or be seen as “difficult” so you push the pain and exhaustion aside to make things easier for the production crew.
The team had the absolute best intentions, and when I flagged my physical needs during our initial briefing, they genuinely validated me and adjusted their agenda. Yet, the huge physical cost of a production schedule is rarely factored into the timeframe or the filming experience for a disabled presenter. It is a paradox I often grapple with: engaging me is wonderful, but the physical setup required to deliver that engagement nearly kills me.
The team has since sent through a time-stamped transcript of the raw footage, and they will send the video over before making the final cut. But the truth is, I don’t want to watch it. I don’t want to see the exhaustion on the screen, and I certainly don’t have the energy to go back and film it again.
Too often, healthcare is built around what professionals think is important rather than what matters most to the person living the experience.
True partnership means understanding that lived experience isn’t a performance that you turn on for a ten-minute video; it is an ongoing, physical reality.
“If we want truly person-centred care, partnership must be more than a buzzword embedded in a symposium agenda. It must be embedded in the logistical reality of how we treat, film, and collaborate with the very people whose voices we want to elevate”