It’s the kind of impact on their lives that most well-intentioned doctors, researches and parents could only ever hope to achieve.
The Facebook group is called You know you have CP when…
It was started following a dream and a whim by two lively young American women with cerebral palsy.
Cara Liebowitz had quite literally confessed on Facebook that she’d had what she considered to be a humourous dream about falling on her face. In her post, she incorporated the hashtag #youknowyouhaveCPwhen.
When her dear friend, Briana Russo, commented that this all sounded like a good Facebook Page, within minutes Cara had taken the concept and brought to life a Facebook Group of the same name.
The momentum grew rapidly
In the beginning, the dynamic duo invited everyone they knew with cerebral palsy.
“This list in itself was a fairly extensive group of people,” says Cara.
“A lot of people actually found it by just searching on Facebook for cerebral palsy groups, and that’s how we got our earliest members who weren’t directly connected to either of us.”
“It grew exponentially and way beyond my wildest dreams. There was a time when we were getting literally dozens of requests to join the group per day,” she says.
It is a family, with all the ups and downs that entails
“We laugh together, we cry together,” explains Cara of the online family she’s grown.”
“One of the first things we did was throw a virtual baby shower for a member who was pregnant. The member was feeling lonely because her family wasn’t supportive of her pregnancy.”
“Her son is four or five now, and every time she posts a picture of him I remember how we all rallied around her,” says Cara.
“We’ve also mourned as a group. At least two active members of the group have passed away in the last two or three years.”
“We were all devastated, and we all leaned on each other and on the Group for support,” she says with dual tones of sadness and pride.
This tight-knit online family has even held offline gatherings three times since inception, where people have travelled from all across the country to be part of the experience.
“It’s incredible to see all these people come from across the country just to see people they’d never met before,” says Cara.
“Some days I get discouraged. Like with any big family, there can be a lot of drama.”
“But I’m reminded why it’s all worth it every time someone says they’re meeting someone else with cerebral palsy for the first time, or when they say they’ve learnt something new about their condition, just by being part of the Group.”
“Some people have grown up never even knowing what their diagnosis was, and then they find this Group and realize there’s a whole community of people out there who are as diverse as the whole human population, but who also face the same struggles,” she says.
“People have said the Group has made them stop hating themselves for having cerebral palsy. It’s quite literally changed lives. It’s changed mine for sure.”
Big things to come
It all started on a dream, so why shouldn’t that continue. Cara Liebowitz has a massive vision for what’s to come next for her online family.
“I don’t have a specific plan – as in a timeline for establishing things – because that takes time and money, both of which I’m very short on at the moment,” she says.
“But I do have a pretty clear picture of what I want it to look like.”
“I would like to use the Autistic Self Advocacy Network (ASAN) as my template. I have long admired the niche that ASAN fills in the autistic community, and I think a similar group could fill the same nice in the cerebral palsy community.”
“There isn’t really an organisation out there that’s run by and for people with cerebral palsy, that’s active in advocating for on a national level for people with cerebral palsy,” says Cara.
“I would like to have resources on what cerebral palsy is, and some of the lesser known aspects of cerebral palsy like the startle reflex or the increase in pain as we age.”
“I would like to have a mentoring program in place between adults and children with cerebral palsy. I would like to take positions on policy issues relevant to the cerebral palsy community like ASAN does. I would like to have conferences where people with cerebral palsy can meet each other. Most of all, I want it to inspire a sense of pride,” she says.
Cara says that having cerebral palsy is no doubt hard, but that she’s proud to have the condition that has made her who she is today.
“I wouldn’t be me without it. I want other people to feel the same confidence and pride in themselves.”
“I work for a national disability advocacy non-profit, so I know the non-profit world and I’m mentally filing ideas and notes away from when I’m ready to start my own organisation,” she says.