For many adults with cerebral palsy (CP), the feelings of isolation and dependence add an extra emotional layer to their sometimes challenging life experiences. At times it can be overwhelming, leading to the questions: Where are my people? Where’s my community? Where can I just ‘be’?
Leigh Lockrey: one man with an idea
In 2009, Leigh Lockrey from Sydney, Australia, joined Facebook and went looking to find an online CP community where he could share, vent, or just hang out with people who understood him. Incredulously he couldn’t find one.
So Leigh created his own global community. As a result, the ‘Cerebral Palsy Just CP’ Facebook group, which now has over 3,600 active members with CP, has become a place to go for peer-to-peer support – where there previously wasn’t one.
For Leigh – who spent 27 years living dependently with CP in The Spastic Centre hostel – moving into his own home in 1985 heralded the first step in finding his voice and independence. “Moving into my own place was magical”, he remembers. “When you live in a care facility you have no control of your own life. You don’t get to make decisions, you can’t even decide what you want for dinner.”
“Moving into my own place felt like the beginning of my life.”
It was this new-found feeling of freedom while living in the community that lead to Leigh’s involvement on advisory boards for The Spastic Centre and the Disability Council NSW. Empowered, he wanted a way to share his personal perspective on life so that his learning could help improve the lives of others.
“I felt that through my experiences and my work with disability agencies, I’d learnt a great deal about CP and about disabilities in general”, Leigh says. “I needed a way to share what I knew.”
Creating an online community
Leigh looked to the online world to share his knowledge, and thought Facebook could be the perfect platform. However, his early forays revealed that the only CP groups on Facebook tended to be for parents of children with CP. With no other options, he joined these groups, but whenever he’d ask an occasional question or make a comment, Leigh would be met with silence.
“I was totally ignored,” Leigh recalls. “So I decided to create a group just for adults with CP. In fact that’s the criteria to join – you must have CP yourself and I’m very strict on that.”
The ‘Just CP’ Facebook group is brilliant in its simplicity and yet so powerful when it comes to the impact that it’s making on the lives of its members. For many adults with CP, being part of this group has provided a much-needed, supportive community. It’s staggering what it is quietly achieving for its members.
“People started to come out of the woodwork,” remembers Leigh. “It completely blew me away. I’d see comments like, ‘I have CP but I’ve never met anyone else with CP before’, or, ‘I’ve just found my new family!’ and, ‘Knowing that you’re not alone and your symptoms are normal makes dealing with CP easier’.”
“I hadn’t anticipated the difference it could make in so many people’s lives.”
Today with over 3,600 members, the ‘Just CP’ themes run deep and strong, offering companionship and a place to be amongst others with CP who understand the challenges. It has become a place to share insights and experiences, to connect, and to improve the lives of one another, conversation by conversation.
“One of our members said she had ‘severe CP’ and then mentioned she’d gone for a walk,” Leigh says. “I said, ‘Hang on, how can you have severe CP and be able to walk?’ She said her doctor had told her she had severe CP, and she hadn’t questioned it. It was only through our group that she realised her CP wasn’t as severe as others. This was an incredible revelation to her. She would have gone through life thinking otherwise.”
Sharing the knowledge
With his background in disability agencies, Leigh quickly understood how powerful and rich the insights shared by the ‘Just CP’ members were, and how valuable they could be in helping to understand life with CP. With the support and consent of his members, Leigh was able to share three years’ worth of content from the site with Cerebral Palsy Alliance in Australia.
Analysis of this data resulted in an important and insightful publication, Just CP Facebook Project, which provides a commentary on the thoughts, feelings and experiences of adults with CP, and has created a rich resource for both researchers and practitioners.
Making a difference
Through his initiative, Leigh has not only found support and friendship, he has also found purpose. Often he can be found online for up to 18 hours a day. “In my paid jobs, I have never worked as hard as this,” he laughs. “I’ve never felt so purposeful.”
And with subgroups covering topics such as dating and friends, technology, power wheelchairs, ageing and spinal cord compression, Leigh’s workload isn’t getting any lighter.
The value in what Leigh has created for the ‘Just CP’ members cannot be overstated.
“Everyone helps each other now,” he says. “Sometimes I’ll just step in to nudge a thread along, or ask a directive question. But everyone is participating in some way.”
The group has created a community in the purest sense of the word. And this simple statement by a member says it all:
“This has opened up a whole world to me. It’s given me a place where I don’t feel that I’m alone with my struggles.”
If the goal of Leigh Lockrey and his ‘Just CP’ Facebook group was to make a difference, then this has easily been achieved. And some.
Note: Just CP is a private group only open to adults who have cerebral palsy. Apply to join from this Facebook page.