We accepted an invitation to go to her wake, or her "Stellabration", being organised by the bolshiest Diva I know, the fabulous Samantha Connor. We were going to the Big Smoke yesterday anyway. To catch up with the kids at the "final" (not!) inspection of their soon to be completed house in the wilds of Banksia Grove. To stock up on vino. To replenish supplies of the Three Stooges' barfy burgers (raw patties). To see Sam's photographic IN Exhibition. To collect the remains of Ziggy, our beloved Volvo, who expired in spectacular fashion last week.
Then we journeyed to the Niche, on the outskirts of the monolith that is the QE 11 Medical Centre. Sam's exhibition was displayed there and Stella's wake was being held there as well. We found a magically easy parking spot in the grounds of the building. Hand in hand, not knowing what to expect from the afternoon, not knowing how'd we react, we went in to find Sam.
Sam, still affected from adventures with her dodgy pancreas, had the bad grace to look stunning. And put us to work. We hung snowflakes and an award banner. I poured champagne. And tried not to get in the way of fellow guests in wheelchairs or using canes. Which I failed miserably. But the best thing was that didn't matter. Nobody seemed to care that a clumsy klutz was in their midst.
I met all these people I'd only spoken to on Facebook. Amazing people. Don't smote me, Stella. They weren't amazing because of, or in spite of, their disabilities. They were just fantastic people. Michael, never at ease with people he doesn't know, was mingling and talking. I was asked to give my tribute to Stella, whom I've never met, by someone else I'd never met. So, I just did.
Then came the formalities, such as they were. An expose of Stella's life, coupled with recordings of her. I thought I swore like a trooper. Stella, at thirty two, made me look like Mother f*#@ing Teresa. I found out she was a fellow a pisshead, who loved dancing (in her wheelchair) and music. She also introduced me to a new term "Inspiration Porn".
What a brilliant explanation. People who have disabilities are supposed to inspire others. Stella, at fifteen, was invited to receive a community awareness award. Her parents quipped "Why? Stella hasn't done anything exceptional!" She was doing well at school, had a part time job and liked Buffy the Vampire Slayer and (OMG) Dawson's Creek. Like most fifteen year olds.
Stella didn't deny her disability. She just didn't seem to believe she was exceptional or interesting or noteworthy because of her disability. She lived her life as best she could with the limitations of her physical body.
She appeared in a hilarious video, recounting being on the train without a ticket. She noted that all able bodied passengers, on the train without tickets, would avert their eyes at the appearance of the railway guard. Stella wanted to be fined for not having a ticket. She would tell the guard she didn't have a ticket! The result? The guard would avert his eyes...and give Stella a ticket! That was a perfect example of Inspiration Porn. Just because she was in a wheelchair and was short and travelling on public transport, she found that others' perceived opinions kept her from being treated in the manner she truly wanted. As a person, not an inspiration.
I realised, in one of those lightbulb moments that she was also describing parents of children who have a disability. I have lost count of the times I've cringed when I've been described as special or exceptional or giving as a parent. What a load of rubbish. I became the parent of two (now young) adult children who have autism by sheer bad luck and genetics. And I've sworn and smacked and carried on just as well as the rest of them. I was also bloody tough, at times probably excessively so. But I loved them all and I did my best. And by a miracle, they have all turned out to be pretty good people. I've known parents, like Michael, who have done everything they could for their children, only to end up with selfish, arrogant and thoroughly undeserving toads.
One of the highlights of the afternoon was the presentation of the Stella Young Snowflake Award, which was given to a disability organisation that perpetuated the worst of the worst of untruths about people living with disability. The (un)worthy nominees were the MS Society, The Cerebral Palsy Alliance and some crowd that were making autism out to be the kiss of death. The lighter side was a video clip make by some people actually living with Cerebral Palsy, sending up the crap that appeared in the original ad. On behalf of the Cerebral Palsy Alliance, the Honorable Rayna Lamb, splendidly clad in a fetching purple frock, accepted the award, with a suitable amount of blubbering, as well as a sincere thank you to Baby Jesus. She brought the house down.
We finished the event with a reading of Stella's favourite poem and a blast of her favourite songs. After helping reduce the quantity of vino, we took our leave and faced the peak hour traffic to come home to Heavenly Beverley. Quite unexpectedly, we had just shared a brilliant event with terrific people. And Stella.
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