Paul and I really have been through it all. Whether it be Screaming Jets gigs, Melbourne Storm games or just hanging out, some of the best times we have had are with each other. Not even him moving interstate, eventually settling in Canberra, could stop our friendship.
Life, however, isn’t always about having a good time. Tragically, Paul’s son Jack was diagnosed with an inoperable brain tumour last May. While he courageously fought through it he recently passed away. He was only seven and if that doesn’t make you appreciate life then nothing will.
Without doubt one of the most challenging aspects of life is that it doesn’t slow down. Rather than take time to deal with this loss my time went straight into how I was getting myself to Canberra. Making sure my brother would be alright to make the journey with me the major priority. Too many assume this is because of the personal care I require. It is far more than this. My brother is someone I genuinely want to travel with, which reduces a stack of stress. I could go on but he would already think I have said too much. Then there was the matter of getting a motel, a van to get us there along with packing, etc.
I got most of this organised in short time. Unfortunately getting a van proved to be extremely difficult. Flying would be quicker and would make sense for most people. For me, though, this was not the best option. Unfortunately I am not allowed to sit in my wheelchair on a plane. This causes me major discomfort and I have generally had enough before the plane takes off. And we were still going to need a van when we were there, particularly on the day of the funeral, so that I could get to everything with a minimum of fuss.
It turns out that this is a busy time of the year if you want a wheelchair accessible van. My preferred choice, a company called Wheelaway, did their best to help but could not provide one. As frustrating as this was it was compounded by the amount of emails I received from friends suggesting them. It’s like they have cornered the market. Somehow I doubt they feel this way and probably wish there was more demand for their service.
By chance Gary (a man who knows too much about me) came over. I told him about the dramas of getting a van and he started typing ridiculously fast on his laptop. He was suggesting companies I didn’t know of. He then said he would make some calls for me. I was taken aback that he was genuinely going to take on some responsibility. He was annoyed that I don’t ask more of him so it was a win-win situation. After going through a reasonably long process it seemed that we had booked a van through Europcar. Of course when I check my emails the next morning the booking has been cancelled. I let Gary know and he responded with a selection of words that can’t be repeated. He was surprised that I took the news well and forcibly informed me that this wasn’t good enough. He was right. Unfortunately I don’t have enough people pointing this out to me. Pushing me further he said I should put my predicament up on Facebook.
Something I reluctantly did. This led to David Clarke, the CEO of my attendant care provider InLife Independent Living, passing on some more than useful contacts. First there was Cliff who came close to finding me a van. When this fell through he put me in touch with Naz who had located a van through Budget. I was able to book it for the time I needed it and then could finally move on to the countless other tasks I had to do. As an aside I enjoy using the term brotherhood and already with Cliff and Naz I feel I have become part of the spinal cord injury brethren.
All this means that my brother and I were in Canberra to celebrate Jack’s life. To be there for Paul and his wife Karyn as they went through something nobody should have to is something I’ll never forget. My brother and I both agreed that we didn’t know how they did it as we left Canberra emotionally and physically exhausted.
David recently asked me to write about my concerns in regard to the NDIS. I will get to that in time but this experience brings up a lot of what I think is missing. The disability movement (if there is such a thing) is gradually moving in the right direction. There is still not enough emphasis on removing the barriers. I would like to see a time where a service provider when hearing of this situation would say “We have a van for you. Now you get back to arranging everything else you need to do but if there’s anything else we can do, don’t hesitate to ask.” That would be an agency that understood people with disability. That would be an agency you could trust. Is that where NDIS is heading, I don’t think so.
And the backlash against inspiration porn goes on. I will be writing about this at length but I warn you unfortunately it’s not a turn on. I understand the resentment by the many disabled bloggers out there. What’s frustrating is what is deemed a priority in the world of disability. When we know that basic needs are not being met it's a struggle to comprehend why inspiration porn is getting so much attention. I wish other issues were being discussed as passionately.
Because sometimes we all need to get some perspective. I know that’s what Jack taught me. He will still be letting everyone around him know that the only teams that matter are the Canberra Raiders and Greater Western Sydney Giants. Just like myself he will be telling people that the best superheroes are Batman and Spiderman. And most importantly he will be telling me to stay focused because life is too short. A part of that being to call his Dad to remind each other to have as much fun as we possibly can. Don’t worry Jack, not only will I do this for your Dad but I'll do it for as many people as I can, including myself.
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