Diversity and Inequality: Pondering on National Cerebral Palsy Awareness Day

Diversity and Inequality: Pondering on National Cerebral Palsy Awareness Day


Mar 25. National Cerebral Palsy awareness day.

‘Why do you want to know (the national cerebral palsy awareness day)?’

The reason that I know about cerebral palsy was due to a girl I came across with in volunteering. It was actually quite coincidental time that she told me about her having cerebral palsy, as she was having an emotional breakdown, and so I stayed with her alone in the whole session and tried to develop a conversation. It was nearly before she left when she suddenly told me, ‘you know it’s the cerebral palsy awareness month right?’ I said no, and she said that there is the national cerebral palsy awareness day. I said I did not know that, and I wanted her to show me on google. She happily did, and showed me the information – that was when she suddenly ask that question – ‘But why do you want to know?’

Frankly that moment I was surprised, and I replied without much thinking, ‘well it’s something which has happened to you. Of course I want to know. You deserve to share about your own experience right?’ We did not develop the conversation as she had to go home, yet that question pondered on my mind for the rest of the night.

I was thinking about how the girl naturally conveyed her genuine doubt. It seemed to reflect her feeling that it was not very likely that people would want to know about cerebral palsy. My heart ached at this understanding. Cerebral palsy is one of the most common and so far incurable childhood motor disabilities caused by the faulty brain control on the limbs and overall body. In the reality, Cerebral Palsy Awareness Month or National Cerebral Palsy Awareness Day does not gain much media attention, and people seldom know about the illness.

Do I want to know (cerebral palsy)?

I was actually one of those people.  ‘Do I want to know (cerebral palsy)?’ That question popped into my mind as I began writing this sharing. Without a doubt I was genuine about my willingness and compassion about the girl’s cerebral palsy experience, yet why did it happen just that moment? Frankly, it was not the first time I saw her nor the first time I spoke to her. Perhaps it seemed intrusive or socially inappropriate if I prompted the question, ‘May I know what happened to you?’, yet I did not show my interest to know. Therefore my understanding about her was, ‘She’s having motor difficulty caused by some sort of reason, and she relies on a wheelchair.’ In fact, I have difficulty typing this sentence out because I do experience a great deal of shame, shame that I had such vague and disrespectful understanding of another person. This description is absolutely not how one should be remembered about, and certainly that neither does not represent any individual.

I kept the google search page the girl helped find and I did some further reading. I found this interesting article which was written by a woman who also has cerebral palsy and devotes to write about it – 31 facts for each day of cerebral palsy awareness month. (I do encourage you to spend some time to read this and know more – https://themighty.com/2016/03/facts-for-each-of-the-31-days-of-cerebral-palsy-awareness-month/) What amazes me is that the facts are not just the ‘factual facts’ – ‘cerebral palsy is not contagious’ ‘cerebral palsy can impair communication, but we find ways’ ‘most people with cerebral palsy don’t want sympathy, they want opportunities’, but they reflect something deeper – empowerment, self-strength, compassion and hope. This is a change of one’s understanding of people with cerebral palsy from the limited rigid medical model and symptoms, to the holistic individual experience. I am a person. I have cerebral palsy and I also deal with relationships, work…etc.

I wonder if I could have asked the girl what happened to her. ‘Why do you want to know?’ People deserve to be attended to, be listened to and understood. And to do this we do not just let curiosity lingered on our minds. We take action to seek to attend to, listen to and understand the other. What if I ask her gently what happened to her instead of letting the elephant stay in the room? Surely I shall acknowledge not everyone wants to tell their stories, or people do find the question intimidating. However, by doing so I am shifting the power of choice from myself to the other person. That person chooses to disclose and share about his/her experience. I choose to keep the door open, and she can choose to keep the door open or not.

This is not about equality, but about address of inequality

Perhaps we may argue we seem to look superior and provoke the brutal fact that we are the ‘normal’ ones when others are not. However that is indeed the brutal reality which no one can shake away, and we cannot stay within the peaceful positive bubble that everyone should be equally treated. I believe this is about choosing to admit inequality, and how we take action to address and minimize the gap. I hope to elaborate on this thinking about inequality further, perhaps in another sharing, but here I highlight that the way to treat everyone equally is not about the same treatment, but rather recognize the difference and taking action to change.

cerebral palsy

This article is not just about cerebral palsy awareness, but also about our mentality towards one’s adversity. We seek to attend to, listen to and understand the other, and we seek for a change. An empowering change and positive growth.

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