Cerebral palsy was something I’d vaguely heard of before, but I never knew what it really was. Never knew nor met anyone with that condition. Until last weekend.
A few weeks ago my mother came across an article in the local newspaper about a lady with cerebral palsy who was baking and selling brownies for a living, while living with her elderly parents in a rented flat in an old estate. Mom asked me to find her on Facebook to place an order in a bid to support the lady’s business and in turn, her family’s livelihood. Found her on Facebook I did, because she didn’t have any website or blog, and we exchanged offline messages to confirm prices and types of brownies. She was very civil in our written communication, she wrote in good English and Malay, and I really like that in people. I looked forward to meeting her at her house to purchase the brownies from her once it was ready.
When I rang the bell and gave a greeting to announce my presence, someone came towards the door from the living room. It was a very small built person, her muscles largely contracted on one side of her body which caused her to walk awkwardly with a gait. From her size and her subsequent sweet and cheerful voice I thought she was someone younger than myself. But no, this person is Miss Suhana, the brownie baker herself, coming to greet me. I hope I didn’t let slip any rude expressions on my face at that moment of realisation. I was just so surprised at what having cerebral palsy meant. Before I had time to register all of this properly she was trying to start a friendly small talk with me. “Trying”, because her speech was so slurred and she stammered quite a bit I honestly didn’t actually catch the first sentence she said. I just smiled politely in response (I was too struck to think of a better way to react) and hurriedly mentally gathered myself for a few more seconds of catching, understanding and responding to her words. All this while I silently admonished myself for not preparing for this moment. The rest of the conversation went well, I asked her to establish the price again, she asked if I was taking the train back, and she reminded me to quickly put the brownies in the fridge the moment I got home, and I kept thanking her for agreeing to take my order. She was always smiling and speaking in a gentle sister-ly tone throughout the conversation.
The trip home was less than half an hour but I thought a lot about her. I googled up “cerebral palsy” on my Blackberry, and I couldn’t help but text a friend about what I’d just experienced. And now that I’m writing this post, I still can’t seem to get around the issue of talking about this without appearing to be patronizing. This is the real issue. It’s not about Miss Suhana and her condition, it’s about social stigma.
When she had first spoken to me at her door and I didn’t catch what she had said, I was thinking, Should I ask her to repeat herself because I didn’t hear it the first time? But, she looks like she’s in such pain to even speak, will it be a burden to ask her to repeat herself? Wait, am I looking down on her as a person by thinking this way? As our little conversation proceeded, I was thinking, Darn, I should’ve at least read up a bit on her condition so that I knew what to expect and prepare myself to face her. But doing that, preparation, isn’t that like pitying her? Who am I to decide whether she wants to be pitied or not? I’m sure she doesn’t, she’s a strong lady, the sole breadwinner of her family, paying for rents, bills, food, medications. But then how do I go about this right now?? Am I acting normal right now? Am I acting like I pity her, looking at her like that?
It wasn’t my first time meeting someone with a condition. I had volunteered at the Mental Institute to join the patients at the women’s ward for their lunch and play time, and it was for a couple of weeks. Back then, it was in a group and if there was anything I was uncertain about, I could always quickly and quietly consult in the volunteer group’s leader or my friend who was also in on the volunteering with me. I rarely felt worried about my outward behaviour because I could take care not to stick out too much from the rest of the group. With patients at the Mental Institute, I just needed to be very friendly, entertain their stories, hold their hands, pass the ball to them if they wanted to play with it, smile. After 1.5 hours it would be over and I just had to get the volunteer group’s leader to sign my Community Involvement Programme (CIP) sheet.
With Miss Suhana I was all alone, standing there, at a loss on how I should be behaving. And I blame part of it on social stigma.
People who don’t care how their words and actions can hurt others would normally cringe at seeing someone who has one side of her body wanting to stay cramped together, and easily confuse and lump such a person with the uneducated or mentally disabled. This is the main social stigma issue that everyone’s talking about. People who do care about their words and actions would act normal and treat the person as if she wasn’t in any way different from the rest of us who are well-formed and developed. But there are people who do care for their actions yet on their minds still think of this person as part of the uneducated or mentally disabled community, and they begin behaving as if they’re trying to manage an autistic child. This group of people, to me, pose a second and even deeper facet of social stigma. The ones who give and show much pity because they think the person needs it.
How should I have gone about it? Should I have, after all, read up a bit beforehand? And with that information, decide how to act in front of her? Part of me is saying that very thought of deciding how to act is, in effect, being patronizing towards her. To assume that she needs special care and communication due to her situation. I tried putting myself in her shoes; how would I want to be treated? I think I would want to be treated normally, not with pity but with positive support and encouragement. But I am not her, and I have no idea if she would feel insulted if I had behaved in any way other than normal. And I don’t know how I appeared to her that day.
Of course, I’m not just talking about Miss Suhana, I’m talking about our society’s behaviour towards anyone and everyone with a physical or at least visible disability. My experience with her has made me think a lot, and I still haven’t got to the end of it. Miss Suhana is far from uneducated; my mother read in the newspaper article that she had worked at a law firm before. Nevermind that, the sheer fact that she sent me messages in perfect grammar, spelling and tense was enough to convince me that she doesn’t have a mental disability, as some may assume her physical form and place of stay couldn’t have allowed her to go far in her studies. She’s 35 or 36 years old, by the way. Which explains why she spoke to me with the gentleness of an older sister, punctuated with calling me “sayang” (Malay for “darling”). She’s a very nice person. I really hope her brownies will sell well. Because ultimately, I never thought buying some brownies would make me open my mind to so much internal discussion about the dreaded social stigma.