sidenote on a keynote

01 Oct, 2017

Basically, this story is illustrative of how sometimes I am a crap activist, and regularly a flawed human. Some months ago, one of my speech pathology friends approached me, to collaboratively present a keynote at the Cerebral Palsy Alliance conference, which was for all the clinical practitioners and staff. After my initial hesitancy was eased with the reassurance of my friend, I began thinking it could be a powerful opportunity, and that to just refuse wouldn’t be constructive. I thought I could at least make some of the staff re-evaluate their practice, and ensure it is always centralising their clients’ wellbeing and needs. Now, to be clear, I’m sure in the minds of the people who are working with disabled people to develop their skillset and improve their quality of life, their job predominately is about wellbeing. 

Yet, when they are tangibly interacting with people’s bodies from a very young age, and inescapably working within the medical framework, I think those ideas of wellbeing are unavoidably skewed. Particularly because most of the parents are still grappling with how to adjust to a slightly different reality than what they expected, often they just want their child “to be as normal as possible”. This can be so easy to conflate with a person’s wellbeing and just “wanting the best outcome for their child”, because they have usually spent 8 months invested in this arbitrary idea of physical normalcy. So, the client’s actual comfort, welfare and desires aren’t given the utmost importance and consideration because in many ways, these interventions are seen as essential. 

I deeply struggle with this, as it is such a murky grey area. I worry so much about the integral harm of being told as a small, impressionable child, that your natural way of functioning is unusual and thus it needs to be corrected somehow. But on the other hand, I have experienced and subsequently understand the benefit of the intensive therapy I did as a kid. There is just so much unknown and uncertainty when a child’s way of being hasn’t really been established yet. It makes sense that they should be given every opportunity to function to the fullest of their capacity and develop good movement patterns, to reduce pain later in life. Perhaps, I’m just wanting to feel these therapies are significantly informed by lived experiences and from the perspective that different modes of moving, talking or walking are valid and sufficient to live well.

It’s interesting feeling my perspective shift, a few years ago I wouldn’t have said these kinds of early medical interventions have a conversion therapy feel about them. The implicit message, unless clearly stated otherwise, is similar, that there’s an ideal and typical way to be in our society, and you need to do everything in your power to try to meet that standard that holds the most value. Sure, we (and actually all minorities) are constantly forced to live with those notions. Kids will absolutely face them in all areas of their lives, but to experience all these professionals working with you and your body to “improve” it, is somehow more invasive. 

So there has to be extreme caution and sensitivity around these things. Ideally, these therapists would thoroughly and always explain that any exercises and treatments are just to increase your comfort, reduce your frustration or lessen potential pain in life. They are not to do anything else, that how your body is, is already fine. They would give people choices around these issues, advocate for client’s wishes and goals, even when they conflict with the family’s, and be prepared to abandon any activities that aren’t contributing to their existence, or getting a person closer to their own objectives. 

Anyway, it took me too many hours of overthinking and analysing to [almost] finish my spiel about the importance of communication access, I mentioned my reservations about the organisation’s advertising, quickly followed with how they genuinely contributed to my life, and then I spoke about the challenges that not having speech creates. I must admit, it wasn’t my most eloquent and forthright piece I have ever written. Nevertheless, I was dressed and prepared, and was there, on the other side of the city, before 9am. 

So, there I was, presenting to a room full of CPA staff, after which, and after I was called “inspiring”, I enthusiastically welcomed people’s questions, and there was an awkward silence. Still, I was hopeful for useful morning tea chats. 

I had briefly skimmed the program and must have not really registered that, after our presentation, the opening plenary session was all about palliative care. We heard about different programs and supports for people and their families who are trying to live, while also facing mortality and death as tangible realities. Although I deeply value these discussions and think it’s so important that clinical staff are aware of the options for clients, I was unsettled that this was at the start of the day.

What I had wrote talked about the significance of an open dialogue to cultivate a sense of control and understanding for clients in any therapeutic setting. I tried to affirm and explain the value of communication in enabling people to lead a productive and joyful life. I was basically saying my existence and way of communicating needs to be respected and valued, for me to function day to day, that it’s how I can feel more substantial in the world of discrimination. 

To then be discussing death and grief, particularly at the beginning on a training day centered on Cerebral Palsy, felt uncomfortably close to implicitly reiterating the damaging association between having a disability and dying. There are so many other aspects of our lives that would be more enriching and beneficial for all the staff to hear about. There were no other people with CP presenting. Although, the day was geared towards practitioners, policy and recent research, I still think we need to have our voices heard and be visibly present in any and all discussions. There was a case study presented, which was of a woman’s end-of-life decisions and death, and her husband who also has CP was sitting in the audience, and his experience was only superficially touched on. It was just the nurses speaking like they paternalistically did these acts for people, not working with them. 

At morning tea, there was no further discussions or even comments. I left feeling awful and like it really wasn’t worthwhile, all my work.