In recent years, I have struggled to call myself an advocate for those with cerebral palsy. I’ve struggled to understand what that means both online and offline in the disability community.
What do I advocate for? Whom do I advocate for?
While attempting to answer these questions, I’ve come to realize that I have to create an organization.
Cerebral palsy is a congenital brain injury that manifests itself in a variety of ways, in different regions of the body. In my case, the left side of my body is affected and so I experience hemiparesis — limited movement and development in most of my muscle groups. Atrophy, weakness, and spasticity have left me with a distinct limp, and so I wear a sophisticated leg brace that improves my stamina, mobility and overall quality of life. I was born with CP, I grew up with CP, and will grow old with CP. Yet this fact is something that is not widely acknowledged by medical professionals and disability organizations. CP is usually described as a childhood disability, but what happens when children grow into adults? They don’t simply grow out of their disability.
image by blnk films
Since 2009, I have blogged sporadically about my life experiences with cerebral palsy. Initially, I named this site TeenCP but as I outgrew this phase of life, I started anew with Cerebral Palsy Strong which captures our hashtag, #cpstrong, on social media as well as a broader portion of individuals with the disability. This is a growing online community consisting of mostly young adults with cerebral palsy who want to take part in our movement to change the way others view disability; to call for a different kind of support and locate a sense of belonging within this space.
I’d begun to notice that there was and still is a vast desire among young people with CP to ‘meet’ others; to connect, relate, and share information that could help those around us. This desire stems from a deep, even subconscious understanding early on in life that our disability somehow makes us different from our friends and family. I didn’t have the words at 8 years old or an awareness at 11 to express that but I knew sharply, that the way people stared at my legs or the fact that I had to go to physical therapy appointments set me apart from even the person most like me — my identical twin. And it might take years of not knowing why for someone like me to start asking questions. According to Cerebral Palsy Alliance (2013) 17 million people have CP worldwide, but before the age of 23, I had never met anyone with CP quite like me. I wondered why that was so I began searching for answers. I found many other young adults online who shared similar experiences or had yet to meet another with CP. I was shocked and saddened by this.
Over time, I grew frustrated with the reality that our larger, national disability organizations did not prioritize supporting young adults with CP in ways that foster connection and understanding. A leading disability organization here in the U.S. hosts an annual conference for its local affiliates but no longer opens its doors to public participation. Funds generally tend to go toward supporting early-intervention research and other costly forms of treatment for babies and young children. While medical treatment is crucial to improve quality of life (and gives hope to parents of young ones with CP) the fact is there is no cure for cerebral palsy. The rest of us go on living with it.
So why are our organizations not willing to openly address the emotional effects of having a lifelong disability? How should a seventeen year old in mainstream school explain their disability when asked, “What’s wrong with you?” Or, “What happened to you?” I still struggle with those questions. Must I always explain myself? Is it my job to make others more comfortable with the word disability? I wonder how or when to disclose my CP to potential employers as I graduate with my master’s degree. I could shy away from the conversation, or make up a lie (as recently depicted in Netflix’s Special) but I refuse, even when it might be easier to do so. I sense with great urgency that our community needs something more as these instances are not few and far between. And so the questions I had about advocacy and my place in it began to reveal answers:
I stand for community, and I advocate for all those #cpstrong.Finding ourselves, finding each other online
In 2017, I began to share visual stories of others with CP mainly through Instagram to give a voice to what we were all feeling, and to narrate disability in a way that reflects upon the messiness and social stigma we often face. We didn’t really start to call it community until we understood that’s what was missing our entire lives. On CPstrong, I aim to capture stories that lend their voices to this process of rearticulating cerebral palsy for what it is in our daily lives and interactions, versus the medical narrative that surrounds it. And now we find ourselves at the intersection of online and offline; of adolescence and early adulthood; how do we translate our digital connections into real life? How do they come to matter? And do our interactions carry different meaning depending on their nature-digital or physical?
As I entered graduate school, I knew I wanted to work on establishing this presence in the disability community. I realized I was more interested in exploring these questions and learning how to articulate the importance of this work in our world today. Rather than receive feedback or comments on my confessional-style blog posts, I want to generate greater levels of participation and a provide more people with a sense of pride and ownership in this space as we claim it for ourselves.
This past March, which happens to be Cerebral Palsy Awareness Month, we had our first community-led event in Southern California. I called it our CP Social: an evening for sharing stories and creating community. We had over 40 people come out to be part of this beautiful and special experience. We discussed issues around disability etiquette and accessibility, as well as dating, traveling and working independently in our late teens, 20s and 30s. This event provided those with CP a way to be heard, seen, and supported by their peers. It gave life to our online community and me, a deeper understanding of how those who identify with CPstrong wanted to be served. While this organization is still in its early days, I look to different models for membership, participation, funding and governance; I look for ways to activate followers of #cpstrong so that this effort can effectively and successfully exist beyond the internet.
image by mattison fetters
I am equally excited and terrified by the prospect of transforming Cerebral Palsy Strong into a member-led organization. I have so many questions and so many reservations about leading the charge. While our first event was highly participatory in nature, organizing and fundraising for the event itself was a lone effort (mostly by choice), and that is not something I can sustain for long. In searching for ways to shift full responsibility from myself and steadily toward other leaders and advocates in our community, I recognize that creating a structure for membership and strengthening affinity among our group is the next step.
So I ask: What kind of organization can meet the unmet needs in the cerebral palsy community? What is the participatory experience that we are after? In a survey I sent out to attendees, 75% of respondents reported that the kind of support they’d like to receive from an organization like CPstrong is social, meaning they’d like to participate in events and opportunities for networking and relationship building in person. One person even suggested forming a mentorship program where those willing could meet with young teens and even parents of children with CP and offer support and guidance, stating that they “would’ve loved to have a friend with CP to tell me that things were going to be okay and that you don’t have to go through it alone.” This feedback is helpful in understanding how people want to serve and be served by our community. Researchers Jessica Best and Alec Saelens studied member engagement and noticed how many member organizations regularly use participatory events to provide their members with a sense of agency over deciding the kind of participation they want (or don’t want).
image by Jeremy Heimans
While our CP Social utilized this tactic, there is still much work and strategy-building to be done with this information. Part of becoming a member-led organization begins with the ask. Simply put, I need to put out the call for help to move this important work forward. Do I look to followers and supporters of CPstrong to crowdfund these efforts through Patreon, or Open Collective — platforms that might help give this movement a greater, quantitative sense of collective worth and ownership? Other options for funding (foundation grants or fiscal sponsorship) might be effective in raising dollars, but they seem to work principally against these goals toward stimulating true collaboration and membership. Moreover, having a crowdfunding campaign might create a sense of accountability and loyalty to our cause. Those who donate once, or on a recurring basis might begin to feel like they are part of a larger effort that is built to serve them; that they have a stake in what we are creating. I also sense that an ambassador-type of program would serve us well, seeing as we are a widely-dispersed online community. I need to recruit more people who can help co-host and co-organize future events and possible mentorship programs.Accessibility & different economies
While we would work to ensure that anyone who comes to our events feels accomodated in terms of accessibility and space, I understand that travel for many with CP is not easy — and even getting around in a crowded setting, navigating a simple pathway through or around people can be an overwhelming challenge. I don’t go to many concerts or crowded venues for this reason. I recognize this and believe we can still provide a sense of belonging for those who wish to participate in our organization from afar. As we are rooted in online community, we can work toward offering newsletters and resources for digital download, as well as create an online forum where a range of disability topics can be explored, in-depth and from anywhere. These goals could be integral to our crowdfunding campaign as well as highlight the importance of creating a multiplicity of spaces where membership in our organization can be discovered and developed.
Professor and political speechwriter Edgar Cahn discusses the significance of the “non-monetary economy [that] includes not only labor but also the creation of a culture, a social asset. Whether we call it collective efficacy or social capital, there is a non-monetary infrastructure of trust, reciprocity, civic engagement.” I hope to perfect this infrastructure for all who wish to participate and offer their support because I believe all forms of participation and membership are valuable. Looking beyond monetary contribution, researcher Joe Armitis urges us to consider how we might measure the value of participation and membership in an organization, as well as how the value of membership may change. Right now, any form of non-monetary contribution or participation is significant for CPstrong as we are new and undefined. I understand there is a desire to help and to serve this organization, but I struggle to find ways in which this help can be distributed effectively and sustainably. How does one truly divide and conquer without knowing how far we can go, or where it might lead us? I hope to tap into the social capital that I know we do have to generate economic capital and engage with alternative ways of doing business. I believe it’s possible to organize ourselves well enough to serve our community, but we must decide on what makes the most sense for us.Harnessing new power
Media activist Jeremy Heimans defines “new power” as the deployment of mass participation and peer coordination to create change and shift outcomes. In his TED Talk (2014) he states that “new power models live and die by the strength of their networks,” and goes on to discuss the characteristics of new power, as opposed to old power. Here is a chart:
image by Jeremy Heimans
While Heimans and Henry Timms, co-author of their book on new power, look to large-scale platforms like Uber and Airbnb as examples of successful displays of new power (perhaps rather uncontrolled, at times). I believe that this concept can still apply to any type of collective movement, including Cerebral Palsy Strong. I aim to move toward new power; to test the strength of our network by dedicating this cause to our peers in a way that lends itself to those who need it most. Although I am not entirely certain on the best way to navigate the exact route from leader driven to peer driven I believe in this community’s capacity to work together on a coordinated effort to change the way young adults with cerebral palsy are served.
“The greatest test for the conductors of new power will be their willingness to engage with the challenges of the least powerful.” -Jeremy Heimans and Henry Timms
In the spirit of do-it-ourselves, we will create our own current: one that is especially made by those who have cerebral palsy themselves. Many disability organizations are founded by parents or relatives of those with CP rather than those who have grown up with CP and understand it intimately. We’d exist, in large part, to engage with the challenges and issues faced by those who feel powerless, or who have at one point in their life felt incapable, inadequate, or somehow less-than. An organization like this wouldn’t make us automatically equipped for success, but at least it would lend a sense of purpose and worth to those who have cerebral palsy and are in search of something like CPstrong.
Noting that new power thrives on transparency, sharing, networking, and collaboration, it feels appropriate to begin creating revenue through an open-source crowdfunding platform like Open Collective, where we can not only raise funds through a membership-based structure, but also create events and use other tools to generate mass participation and shift outcomes for our people. I want to rid myself of this idea that membership in an organization is tied to money or sponsorship. While financial support will help us act on certain ideas, I want to expand my understanding of membership to include the non-monetary value that our members might add — whether through acts of service, sharing insights, creating content. All of it is worth something in a network that functions off of spreadability (#cpstrong) and co-creation.A final thought
However the past has steered us, we are here now. Many of us have grown into adults with CP. We go to college, are in pursuit of high-level degrees, lucrative careers, relationships — because we want to, or to prove to others (and ourselves) that we are capable of everything and more despite our disability. But at the same time, we face an uncertain reality. We learn at a young age that we must devote considerable time and resources to healthcare and wellness to maintain our health and mobility. So how do we navigate the murky waters of life-long debility when ambition, norms, and ideas about success or beauty get in the way? I hope that CPstrong can be a community where those questions can be explored and perhaps even put to rest. We recognize this kind of community where we see it — whether online or offline — and we desire to seek out more of whatever this is.