My workday as the Membership and Communications Officer at CPSN usually consists of finding new and exciting ways to convey the experiences of people living with a disability.
Twelve months of signature hairstyle looks on CP Diaries.One day, I wondered how I could better capture these interactions and share them with the public? Especially as an adult with cerebral palsy myself, I wanted to compare my experiences with other adults with disabilities.
This is how I came up with the idea for CP Diaries, a YouTube video series documenting my experiences with cerebral palsy (CP), and other adults with similar experiences. Each month, I go behind the scenes to explore a range of topics that would resonate with the CP community.
I wanted each guest on the YouTube series to give personal and varied accounts of their lived experiences – the good, the bad and the ugly.
It’s officially now the first anniversary of CP Diaries and to celebrate I wanted to share six things I’ve learned so far.
1. No one wants to be your first guest
I quickly realised the biggest challenge was getting willing guests prepared to share their personal experiences.
The idea was down on paper but pitching the idea to prospective guests was tricky when they had no reference point. No existing episodes were floating on the internet, no way of knowing how their stories would be presented to the public.
THERE WAS AN UNDERSTANDABLE HESITATION since I asked them to share their views on such personal topics. During the first few months of hosting CP Diaries, it wasn’t uncommon for people to decline to be involved or even pull out at the last minute.
As months went on and the online episodes started gaining traction, I found it easier to get guests. There was a better sense of trust that I wouldn’t misrepresent people’s experiences or intentions.
2. The technical stuff takes practice
Looking back at those first few episodes, I see things I would do differently. Aside from the overexposed backlighting and cropped heads in those first few episodes, relaxing in front of the camera is an acquired skill that takes practice.
It took time to feel comfortable in my skin, and I think it shows. While those first edits were hard to watch, I’m glad I have them to look back on.
The other benefit of recording myself was that it allowed me to get more comfortable with my body image. Like many people with disabilities, I’ve struggled to see myself on camera and recognise the tiny details that give away my cerebral palsy.
However, months of watching myself have allowed me to embrace these attributes more.
3. Not everyone wants to hear what you have to say
As I got more confident delivering the series, I decided to go into more taboo content. With the first few episodes being a safer territory, I wanted to delve deeper into topics not typically discussed within the disability community.
With more willing participants coming forward, I finally got the chance to do just that. Still, the risk of covering more unconventional content such as exploring a woman’s choice not to disclose her cerebral palsy diagnosis, is not always accepted.
4. More representation of adults with cerebral palsy
As I’ve gotten older, my view of myself and my disability has changed. I realised that adults with cerebral palsy rarely get a platform to articulate their own experiences in a space dominated by children’s stories. Adults with cerebral palsy miss out on seeing a reflection of themselves in the world.
I’ve experienced this personally; the interactions that I’ve had with other adults with cerebral palsy (outside of work) have been few and far between. Therefore, it is important to share more stories of adults with cerebral palsy.
5. Visual storytelling is the way forward
During my first two years at CPSN, I was fixed on writing articles on everything from the medical challenges to social prejudice that people within the cerebral palsy community experience.
Beyond the sentimental stories, we’re used to seeing about people with disabilities – it is a much more complex and layered experience. Video interviews give us a better way to capture these interactions and share them with the public. Having real emotions and real people on screen provides real insight into how adults with disabilities see and experience the world.
6. Talking to others who get what I go through
The last twelve months have been full of challenges, frustrations, and surprises. Still, most importantly, it’s been refreshing for me as a person to hear from other adults with disabilities who have faced similar experiences as me.
Every time I have the chance to encounter someone who has walked the same path as me, I’ve caught myself in meandering conversations uniquely specific to an experience only few others can understand. Together, our voices are louder, and it is great to use CP Diaries as a platform to advocate for adults with cerebral palsy and other similar disabilities.
This was written by Natalie. Natalie is CPSN's Membership and Communications Officer and has lived experience with cerebral palsy.
Here is the latest episode of CP Diaries - Nat is interviewing her sister Aisling about what it's like to navigate life with a sibling with a disability.