Lifeboat

Last summer, my sister and I took our brother, who was visiting from Darwin, on a day trip to the Dandenong Ranges. My brother’s disability support worker drove the van that we’d hired to fit all three of us in our electric wheelchairs in the back. As we curved up the hill, the sky obscured by tall mountain ash, our conversation flowed with fond memories of the trips we took here with our parents when they were still alive.

We stopped at a picturesque strip of shops popular with tourists. Rolling single file so we didn’t block the footpath, we had to pass by one shop after another without being able to go in. None of the shops was accessible. All had at least one step. Finally, near the end of the street, there was a gift shop that we thought we might be able to enter. There were a couple of steps at the front entrance, but we noticed a step- less doorway to the side. It led to a courtyard full of artfully arranged pot plants, handmade gifts, mosaics and garden sculptures. As we entered, the customers in the courtyard stared or moved aside, or apologised for no reason.

My brother wanted to buy a gift to take back to his wife. He saw a hanging metal decoration and asked his support worker to take it down for him.

Since there were two steps into the main shop, he gave the support worker his credit card and asked her to make the purchase for him. The owner came out. He was swarthy, with greying hair that hung to his shoulders.

Dressed completely in black, he could have been an ageing rockstar. “Good to see ya, mate,” he said in a loud voice. He insisted that my brother take the piece for free. “Just seeing you out and about,” he said, “you’ve made my day.”

I could hear him from the other end of the courtyard. Oh no, I groaned, and tried to hide behind some pot plants. My brother was insisting that he pay. The owner, with a warm face and wide, gesticulating hands, responded that he had thought his business wouldn’t make it through the Covid lock-downs, but “there’s always someone worse off, and you’ve got to always help others!”

“And who are they?” He waved towards my sister and then, despite the pot plants, at me. “Can’t leave them out, can we!” He stepped back into the shop. Before I had time to make a getaway, he was back and gesturing to my sister and me to come over. I felt conflicted and embarrassed but didn’t want to hurt his feelings. I approached and gave him a smile.

“Good to see you smiling, and what a gorgeous smile it is,” he said. He presented my sister and me each with a gift bar of soap. The other customers gave us fond, indulging looks.

As soon as we left the shop and were out of earshot, I muttered, “Aren’t we just inspirational!”

My brother rebuked me: “You’re too cynical.”

“He was just being kind,” my sister added.

“But it made you feel like a child, right?” I said.

“He’s better than most people,” she answered.

My brother’s body had slid down the wheelchair on one side. The side supports on his backrest were not enough to keep him in place when the wheelchair jolted. We stopped at a space in front of a closed shopfront. His support worker supported my brother’s head with the flat of one hand and pushed his shoulder with her other hand so he was sitting upright again.

She was an excellent support – kind, attentive and unassuming. I was grateful that she had been fine with helping me to the toilet during our day out, because it meant I didn’t have to organise my own support worker.

My brother said he felt bad about getting the decoration for free when he probably earned more money than the shop owner. “Oh well,” he added, “it makes him feel good.”

“Exactly!” I said, “when what we need is people who will actually make real changes, like make their buildings accessible.”

“Hey,” my brother said, “let’s go to the next shop and see what other free stuff we can score!” We all burst out laughing. My brother’s support worker couldn’t stop giggling. I loved my brother’s wicked sense of humour but felt that he had effectively ended the conversation. I would have liked to talk more. You would think that having grown up together with the same disability, we would have shared our experiences more. We seldom did. This probably goes back to our history.

There were five of us siblings, all born in Malaysia. The two older ones were born without the condition. The three youngest of us were born with Spinal Muscular Atrophy. My father believed the three of us were the result of an ancestral curse. Ever since we were children, he would tell us the story of how his mother had been obliged by custom to live in the home of her husband’s ageing parents and care for them. But she broke her duty and talked her husband into leaving his parents’ home. On the day they walked out, her husband’s parents slaughtered a pig and pronounced a curse upon the couple. I imagined this curse as a claw following my ancestors out the door. By a logic unbeknown to us, the curse bypassed one generation and my dozens of cousins and chose to sink its talons into my two siblings and me.

After we migrated to Australia, when I was about eleven years old, my parents became born- again Christians. Many people laid their hands on us in prayer and tried to raise us from our wheelchairs. “Demon of sickness,” they would shout, “in the name of Jesus, leave the bodies of these children.”

There were always two or more prayer meetings or healing rallies every week that we were forced to go to. Some of the congregants, without asking, would lay their hands on my head or my legs and start praying. Others would first address me, “Do you want to be healed?” It felt churlish to say no. But I didn’t want to say yes – why did they think that I needed healing any more than the next person? Soon I learnt to pretend that I couldn’t speak English so I wouldn’t have to answer them.

A friend I’ve had since my schooldays came to a couple of those prayer meetings with me. Recently, she asked whether growing up like that had traumatised me. I said it had, a bit, but I had a better understanding of my parents now. They had been told by doctors that our condition was progressive and all our muscles would waste to the point that we would not be able to move or breathe and we would die early. From infancy, they saw how we weakened and would never meet the expected growth milestones. This was their way of coping with our prognosis. We were expected always to talk and act as though we were not disabled, as though we were going to be healed. Today, our parents have both died, and my brother, sister and I have lived beyond expectations and are now in our fifties. But I still feel that constraint on sharing the experience of being disabled with my siblings.

I wondered again about the rock- star shop owner and whether I was too cynical, as my brother said. Perhaps I was still smarting from a previous encounter, when I had enquired about wheelchair access to a gallery owned by a popular patron of artists. The patron had replied, “If we have to put in a ramp, then what will you ask for next, something for the deaf and blind? It’s not going to pay for itself, is it, and it’s not like you people are going to buy anything.”

I did feel ashamed about criticising the shop owner when he was being kind. Wasn’t it empathy that led him to congratulate us for “getting out and about”? After all, it had taken us a lot of effort and time to arrange for a disability support worker and an accessible van, to ring around restaurants to find a place where we could eat and to research where disabled access toilets were available along the route. And too bad if I was tired and out of sorts and just wanted to blend into the crowd. On my own, I would attract attention, but when it was the three of us people behaved like we were a spectacle! It was something I had to psych myself up for.

It was typical that people would stereotype us as either overcoming our disabilities (being inspirational) or letting the disability get us down (being victims).

“I don’t see you as disabled,” a work colleague once said, thinking she was complimenting me. “You and Theo [a mutual friend] have such different attitudes. You don’t let your disability define you – you sit up straight with pride, but Theo just hangs his head.”

I knew that Theo hung his head because of the weakened muscles in his spine. With the progress of my own disability, it may not just be a hang to my neck I’ll be acquiring but also, to some, a negative attitude.

The problem, I suspected, was that the shop owner wasn’t congratulating us for making the effort to go out into a world that is discriminatory and inaccessible. More likely, he was congratulating us for smiling or being positive despite being in wheelchairs. People think the problem is just your bodily or mental impairment. I’m not saying that pain and loss of function don’t come with disability. My point is that people treat disability like it’s a kind of strange and unnatural occurrence. But disabled or not, all our bodies shift and change and experience varying degrees of function and limitation. What many people don’t see is the bigger issue: discriminatory attitudes and society’s unwillingness to meet the needs of disabled people.

I wouldn’t blame him, though. It can be hard to absorb the distinction between being limited by your own body and being disabled by society’s barriers. It has taken me half a lifetime.

There were definitely a few positives about my parents’ approach to disability. At a time when many parents would have sent us to a segregated school, I’m grateful that my parents sent us to our local state schools. The problem, though, was that these schools were full of steps and hard to get around. In primary school, the lack of access meant I had to stay in the classroom by myself every lunch and recess while the other children went out to play. It never occurred to me or any of the adults around that the school should have made changes or put in a ramp so that I could go out to play with the other children. When the classroom had emptied, I would take my sandwich and a big book of fairytales out of my desk. I read the tales from start to end, and then went back and read my favourites again. Of course, “The Little Mermaid” was my very favourite. Not the plastic Disney version – I loved the traditional version where she died.

“Every step you take will feel as if you were treading upon knife blades so sharp that blood must flow,” said the sea witch as she held out to the little mermaid the potion that would change her tail to human legs. “Are you willing to suffer all this?”

“Yes,” the Little Mermaid said in a trembling voice, as she thought of the Prince and of gaining a human soul.

Suddenly the bell would sound, and I would emerge from my watery depths. First, the clatter of running along the corridor, and then the kids bursting through the door, a game of chase started in the playground spill-ing into the classroom. And while the others filed back in, I’d sometimes catch snatches of excited talk or teasing, he tried to kiss her behind the toilets, or who can spin the longest; the room filled with their hot, flushed faces, chatter and laughter. It seemed so magical, this secret life of the playground.

In secondary school, I made my first friend, Frida. It was effortless, I looked at her drawings in art class and she looked at mine and we gravitated to each other. At lunchtime, she would stay in the classroom, and we would sit side by side and draw. Sometimes she would take me down the step in my wheelchair and push me into the playground. Our playground was also a car park, and one lunchtime while we were sitting there a van pulled up and out came a bustling woman wearing a white tracksuit.

“They’re coming to take you away,” Frida joked.

The woman did in fact come to get me. She operated a lift to load me into the van and took me to the disabled access pool at a school for children with disabilities. They helped me into bathers in a bathroom with lifting hoists and beds and bedpans, then lined me up with the others in wheelchairs by the side of the pool. There were four of us lined up, waiting for our turn to be taken into the water. I was second- last in line, and a teen a bit older than me was last.

Immediately, she beckoned to me. Her movements were big and erratic. Maybe that was why she had two seatbelts criss crossing her torso. She didn’t say words that I could recognise as such, but she made friendly expressive sounds, pointed at me and seemed to be asking my name. She was curious about me, as I was about her. Whether we understood exactly what the other was saying was hit- and- miss, but we enjoyed the exchange and continued until we got tired. The clock showed that we had been waiting for over an hour.

Finally, it was my turn to be taken into the pool. The water was deliciously warm and buoyant. My new friend, the last one still waiting, gestured to me from the side of the pool. She made swimming motions to me, and I pretended to splash her. “Your turn soon!” I called out.

But I had only been in the pool for a few minutes when a worker started to pull me out of the water. “The bus is here!” she said. Another worker was taking the brakes off my friend’s wheelchair and dragging her away. She didn’t even get the chance to feel the water.

She started to wail and thrash her body around. Her cry was agonising, her body jerked so violently that the wheelchair rocked. The worker who had been pulling me out of the water rushed over to her. Both workers pulled tight the belts around her, jerking her back. How many times had things like this happened to her, I wondered. Tears fell from my eyes. Her distress was unbearable. Suddenly I couldn’t take it. A switch flicked in me, and I looked away from her. I tried to shut out her wails. I will never be her, I vowed to myself.

To my mind at that time, the solution was to not be disabled, to not be vulnerable. It did not seem that I could do anything about the way they were treating us. It did not occur to me to rail at them or that anyone would think what they were doing was wrong.

Disability was something I had to deny and overcome. This mindset influenced the way I tried to live right up until my twenties. I loved art but made myself study law because I knew I would need some power and money if I were to be able to fend for myself. There was no place for weakness in some of my legal jobs, and I would get pressure sores from sitting too long in one position rather than show that I needed help.

But my body could not be controlled. My motor neurons continued to die, my muscles wasted, and I got weaker. I fluctuated between ignoring my body and pretending it wasn’t there; and watching it like a hawk. I measured small changes, repeated movements in timed brackets so I could compare how long I could go without fatiguing; kept notes of things that I could do six months ago which I couldn’t do now. The future filled me with terror when I was young. What will become of me when I get too weak to look after myself? Will anybody help care for me? Will there be a place for me in this world? Will I have any say in how I live my life?