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It’s Not Even A Holiday

16 February, 2016

My friend, Paul and I really have been through it all. Whether its 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, and eventually settling down in Canberra, could stop our friendship.

Life, however, isn’t always about having a good time. Tragically, in May last year, Paul’s son Jack was diagnosed with an inoperable brain tumour. While he fought courageously, he recently passed away. He was only seven and if that doesn’t make you appreciate life then nothing will.

Without a doubt one of the most challenging aspects of life is that it doesn’t slow down. Rather than taking the time to deal with this loss, I straight away looked into how I was going to get myself to Canberra. My main priority was making sure that my brother could take this journey with me. 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 for me. I could go on but he would already think I have said too much! There was also the matter of getting a motel, a van to get us there, along with packing etc.

"Without a doubt one of the most challenging aspects of life is that it doesn’t slow down. Rather than taking the time to deal with this loss, I straight away looked into how I was going to get myself to Canberra."

"Flying would be much 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."

I ended up getting most of this organised within a short time, however, getting a van proved to be extremely difficult. Flying would be much 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 already had enough before the plane even takes off. Plus, 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 minimum fuss.

It turns out that this was 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 me but did not have one available. 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 services.

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; suggesting companies I wasn’t aware of. He then said he would also make some calls for me. I was taken aback that he was genuinely going to take on some responsibility – he gets 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 checked 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 these kinds of things out to me. Pushing me further he suggested that I should put my predicament up on Facebook.

"After going through a reasonably long process it seemed that we had booked a van through Europcar. Of course when I checked my emails the next morning the booking has been cancelled..."

"Unfortunately I don’t have enough people pointing these kinds of things out to me. Pushing me further he suggested that I should put my predicament up on Facebook."

This is something that I did quite reluctantly. However, it did end up leading 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 from Spire (AQA) who had located a van through Budget. I was able to book something for the period of time that I need and finally move on to the countless other tasks I had to complete. As a side note; I enjoy using the term brotherhood and with Cliff and Naz I already feel I have become part of the spinal cord injury brethren.

All of this means that my brother and I were able to travel to Canberra to celebrate Jack’s life. To be there for Paul and his wife Karyn, as they went through something nobody should ever have to, is something I will never forget. My brother and I both agreed that we don’t know how they did it; leaving Canberra emotionally and physically exhausted.

 

"The disability movement (if there is such a thing) is gradually moving in the right direction; though, there is still not enough emphasis on removing the barriers."

"...Is that where NDIS is heading? I don’t think so."

David recently asked me to write about my concerns regarding the National Disability Insurance Scheme (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; though, 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 kind of 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 to help, don’t hesitate to ask.’’ That would be an agency that understood people with a disability. That would be an agency you could trust. Is that where NDIS is heading? I don’t think so.

And so 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 just wish other issues were being discussed as passionately!

Sometimes we all just 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! And just like me, 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 for me to call his Dad regularly 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.

"Sometimes we all just need to get some perspective... I know that’s what Jack taught me."

"...And most importantly he will be telling me to stay focused because life is too short."

Lachlan McLeod has lived with an SCI his whole life. He is currently writing a blog to demonstrate that people with disability do have fulfilling lives. When he is not doing that, he enjoys watching professional wrestling and listening to heavy metal music.

Tags: Blog, Health & Wellbeing, Travel & Leisure