I have been reading the second book from Sharon M Draper’s series after the smash hit Out of My Mind. To be honest, I find it a little odd because it goes back to segregation in my eyes. Melody goes off to summer camp, which is respite. This reminded me of my own experience of going to a respite program.

It was the 90s and there was no NDIS. My mother had to go to a local disability service to get support for me. It was coming up to school holidays and I was in Year 3. My mother wanted vacation care, especially since my friend Ali was going to a local program. But Bert was busy that week, so we went to a meeting with the head manager of a disability service to ask about support during the break.

The manager became very excited and told us about their vacation care program with “cool outings.” She asked me if I liked strawberry ice cream. “There is an outing to the strawberry farm next Friday. Do you want to go, Marlena?” she asked in a happy voice, like she was talking to a four-year-old. Then she turned to my tired mother and told her she needed a break, promising that I would be very well taken care of.

I was only eight and had no idea what segregation was. I thought I was going to the strawberry farm with some kids for the day. Plus, the mention of strawberry ice cream made me think of a giant sundae like the Big Pineapple. I was curious and excited.

The following Friday, I turned up at the disability service in my manual chair. There was a boy in a large electric chair, and the van could only take one, so I missed out. I was introduced to Shane, a bubbly woman with a big grin who would be looking after me. Along with two other kids with physical disabilities and their workers, we piled into the white van and headed off.

When we arrived, we sat at a table while the workers had coffee. I looked out at the farm and saw a horse and chickens. I wondered why Shane wasn’t connecting with me or the other kids. Eventually, we went to the guinea pig pen, where Shane placed one on my tray. It was hot, and all three of our wheelchairs were squeezed into the pen. Soon after, the workers drifted away to the café for more coffee and snacks, leaving us kids alone.

An hour later, we moved to the horse pen, where we finally did something fun - feeding the horse. Then it was back to the table for lunch. Shane had lost her earlier bubbly grin and was going through the motions. She spoke to me in that same patronising “happy” tone, like I was four. I stayed polite but kept wondering why she spoke that way.

After lunch, she made a big fuss about bringing us ice cream, the part of the day I was most looking forward to. But it wasn’t a big sundae. She returned with the cheapest strawberry sundae, with no cream and just one strawberry, for three kids to share. We each got a spoonful, and that was it.

The boy in our group began making noises and pinching his worker. Maybe he was hot, maybe he wanted more ice cream, or maybe he was trying to communicate something. Instead of helping, the workers gossiped and complained. They eventually called him naughty and moved him to the back of the bus when we left. I felt uncomfortable hearing them speak about him that way.

Back at the service, Shane suddenly became bubbly again. By then, I just wanted to go home to Mum and Bert. I told them what happened. Mum was furious and told the manager we’d never return. I was relieved.

After that, Mum enrolled my brother and me at the vacation care Ali attended. Bert rearranged his work so he could take me. That program was amazing. The kids, including Ali, welcomed me, and I was included in everything.

One of my friend’s mums, a nurse, told Bert, “We’re all good, I’ll feed Marlena lunch today.” I had the best day, just being with my friend without a third party.

Looking back, I realise I was lucky. I only experienced segregation like that once. Many people with disabilities face it every day. That thought makes me sad. What I learned from that outing is the importance of being around people who truly connect with you, who genuinely want to be there.

Unfortunately, respite outings and programs still exist in disability services. Decades later, we still need to change how we view disability and care. Support someone to work their job. Support someone to go skydiving. Support someone to go further and build something real. That is when we will see true change in the disability world.

About the Author:
Marlena Katene is Australia’s most unique entertainment journalist. Having Cerebral Palsy Marlena communicates via an ABC Board and iPad. After completing her Bachelor of Communications degree Marlena has been blessed to interview a wide range of people ranging from Ed Sheeran, Robbie Williams and even the Dalia Lama. While her journalism focuses mainly on music she also has written on other issues and freelance writes for a variety of magazines. Apart from her journalism work, Marlena is an avid traveller and adventure seeker. In 2016 she became the first person in the world with Cerebral Palsy to Base jump, achieving this feat by jumping off the 421 metre KL Tower in Malaysia. Addicted to travelling she is always seeking the next adventure and place to explore. You can find Marlena on Instagram as @marlena_katene