Cerebral Palsy and Vulnerability – By Robyn Lambird

As a para Olympic athlete with cerebral palsy Robyn has a lot to share about her physicality.  Her feedback, perspective and experience is amazing.  Robyn will be in NYC in December so that we can work intensively together again. Sharing her blogpost with you.  Stay tuned for what happens in December!

If you follow me on social media you may have noticed that I have been hanging out in beautiful Barcelona for the past week after competing in Switzerland. This is because I had the opportunity to meet Tamar Rogoff, a dancer and choreographer, who has an incredible knowledge of the body. I first came across Tamar and her work, when I stumbled over the trailer for Enter the Faun on tumblr…and it blew my mind!! In the documentary Tamar works with actor Gregg Mozgala, who has Cerebral Palsy, training him to become a dancer. Now you may find the idea of trying to get someone with

 cerebral palsy to become a professional dancer entertaining, but what’s really remarkable is that in the process she somehow manages to rewire his nervous system to completely change his alignment and the way he moves. So needless to say ever since seeing the trailer and subsequently watching the documentary, I have been fascinated with the pairs work and I have been conversing with Tamar for the 4 past years. Through countless emails and skype calls, I have learnt so much from her about my own body, or as she calls it developing a ‘body intelligence’, and I hope in return I have given her a deeper understanding of what it’s like to live in a body like mine. So when when we discovered we were going to be in such close proximity this month in Europe, we just knew we had to meet. It was such an amazing experience to sightsee and work on the body with her in such an incredible city, but perhaps my biggest takeaways were realisations surrounding the vulnerability you harvest as an individual living with CP, and that’s what I hope to put into words for you in this post.

Now as a little background if you haven’t seen the documentary, Tamar’s work is based around 2 main practices; shaking and body scripting.
Shaking is a technique used to release tension in the body, for people with CP the physical tension is usually found in the muscles from constant over work and spasticity. If you watch the trailer for the film you can see it being practiced.
Where as body scripting is a way of directing the body how to move or walk, almost as if you a choreographing a dance. The language of body scripting uses landmarks in the body such as the clavicles or sternum, or it creates them, for instance in my case imagining the pelvic floor as a third foot that should guide my gait. This makes it easier for individuals like myself who have neurological impairment, and there for struggle to connect with certain muscles, to play with different ways of moving the body.

Now back to vulnerability, for me living with Cerebral Palsy is like walking on a tightrope, I’m constantly on edge. Not only do I have to constantly and consciously think about the way in which I move, working against gravity and my own body, but I also have to be hyper focused on my surroundings; looking for things like uneven ground and dodging people in crowds, because of my lack of balance and coordination. Paired with this, is that fact that is the fact that I live in almost constant state of ‘fight or flight’ because of an increased startle reflex, meaning my nervous system is always on high alert. As a result things like physical touch and affection have been difficult situations to navigate, I’m so caught up in navigating the world in a body that perceives danger everywhere, that fights to stay upright and to move forward, that bringing another being into the mix is anxiety inducing. Of course there are exceptions to this, with people I know very well these things become easier, I get an understanding of their bodies, the way they move, and my own nervous system begins to trust. I learn to move in balance with them and the stress response dies, but it can take a long time and it’s something I struggle with even with people I consider close friends. Oliver Sacks described Cerebral Palsy as a ‘bully’, meaning many of those living with the condition have an innate fear of falling or being taken off guard, this means we develop a way of using a lot of fast and messy energy to muscle us through everything from walking to preparing a meal, with our minds at odds with our bodies, as our thought out movements are turned into a something disjointed and awkward. This bully is what causes me, and plenty of others I have encountered with CP, to detach. To give in to the bully, to avoid things like physical affection, where trust has to be placed in another’s body. I’m sure some of it comes from self-consciousness too, knowing my movements appear awkward and not wanting to display this to others, but I think it’s largely due to fear.

As mentioned above Tamar’s practice of shaking is aimed at relieving tension, and at first my consideration was of it relieving the physical tension caused by spacisty, which it certainly does, providing length and relaxation to the muscles, but after my experiences in Barcelona, I think more importantly it relieves the inner tension caused by the bully. The sense of being on edge disappears and as if for the first time you settle into your own body and relax into the world and those around you. On my last night in Barcelona, after a fairly long session of shaking and body scripting with Tamar, we walked to a cafe on a busy corner for dinner. During the walk and as I sat at the cafe, I felt so at peace. There was a sense of stillness inside of me, and I’m not talking about my hands, which were for the first time in many years as steady as a rock. I felt so unbelievably happy and calm, I got a little choked up. I watched the world go by without any consideration for my physical being. The motorcycles whizzing past didn’t make my arms tense up and I didn’t lower into a deep crouch as I walked over the uneven cobblestones. I felt as though I wanted to walk for hours without stopping, experiencing life without the bully, but we settled for a large pan of paella and a beer, so content to sit without the noise of the city startling me as motorcycles whizzed past and glass bottles were dropped into recycling bins. Maybe the bully can be tamed after all?


1 comment

  • Margot

    I saw this post originally on Robyn’s Tumblr and other social media and its one of my all time favorite posts of hers! It reminds me so much of my own experiences doing body work and shaking. I noticed like Robyn that there is a tendency to detach even spiritually and emotionally as well as physically because of “the bully” in CP. I think part of the detachment comes from the frustration of wanting to receive affection and give it in return but our bodies don’t allow us to always reciprocate in the way we want and give the right signals to the other person. Mentally and rationally our brains crave it like everyone else. Physically parts of us refuse it. I think learning to connect rather than detach is very important for people with CP.
    Welcome to the freedom that is shaking Robyn!


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