Adding to my frustration is that autism seems to be the only disability getting any mainstream attention in regard to NDIS. In time I will write a blog about the hierarchy of disability, which is detrimental and unfortunately does exist. Not surprisingly I feel men who have been a quadriplegic their entire life are a long way down the list. But this isn’t why I am disappointed
No, I’m impressed. I just wish that whoever is advocating for people with autism would take on every disability. At the very least could they show us how to promote ourselves. It would help us all and possibly give disability a more united front.
I also got my first look at a NDIS plan. That wasn’t too bad and seemed as it was relatively easy to work out. Then I started to read the NDIS price guide. It contains codes for specific items and the costs associated with them. As a sign that I haven’t given up I will dedicate a blog purely to this, when I have made more sense of it. This will require me to mentally accept that this is how the NDIS is going to be implemented, which will take some time.
Maybe I am the only one but I thought that if people with disability and their families were asked what they want, there would be a common answer. Less bureaucracy. This would mean less stress and less complications. In my case this would mean I would have more time to pursue my other interests.
There is so much to write about in relation to this. Basically though it’s what upsets me most about being disabled. Something I have felt since I was a teenager.
To get the most basic of my needs usually requires metaphorically jumping through hoops. Even when you are working with like minded people it’s draining. And honestly it’s destructive. How could it not be?
After all I am constantly having to prove my disability and my worth to people who supposedly understand my needs. Giving the price guide a brief read was the final straw that demonstrated the NDIS not only wasn’t going to change this, it hadn’t taken it into account.
Now I could have kept reading, which would have led to extensive cursing. Mostly at myself for not doing an accounting degree. Thankfully while I’m not perfect my mental health is important to me so I knew what to do.
I needed to get away from the NDIS and get involved in something else. The universe must have been listening because the right opportunity quickly presented itself.
I make no secret of my love of professional wrestling. I could go on about it for hours but I won’t this time. Primarily once I understood the importance of being able to overcome adversity, wrestling became a key part of my life.
With this in mind I thought Melbourne City Wrestling (MCW) were going to give me some much needed inspiration. In the week the budget cuts were announced I would hopefully see JuiceXT become tag team champions.
For me this would be a dream come true. The team comprises Mr Juicy a man who is way too similar to me. He is entertaining with great comedic skills. So much so that his wrestling ability can be underestimated. To make matters worse we met after a show. He told me how he was having trouble with the flexibility in his legs. I quickly interrupted saying I understood and he gave me a look as if he had said something wrong. I followed up with don't look at me like that you’re always making fun of yourself, which was the beginning of our bromance.
His partner is JXT. I laugh at myself when I think of him because in reality he appeals most to girls in their late teens and early 20s. To me though he is the nicest man in Melbourne a nickname I gave him soon after we met. He constantly mingles with the fans, never making it seem like he’s going to effort. In fact I think he’s so nice it goes against him. I had lost count of the times JXT had been denied title opportunities, something that increasingly frustrated me. It had got to me that I had forcibly told him that it was one of my missions to see him win a MCW title.
To add to the anticipation the brains behind Mr Juicy had taken notice of my Facebook updates about the importance of them being tag team champions. He said that when JuiceXT won the titles he would stand on the back of my wheelchair and I would drive him around the arena. This definitely added to my excitement.
So at MCW At Our Best I was there ready when the unthinkable occurred. The tag team champions The Estate walked out. Purposely losing by count out because the titles can only be won by pinfall or submission.
I was crushed. I thought they would probably lose with their first chance but the way it transpired was disgraceful. As I saw it pretend or not, this should not have happened. The fact that it did meant JuiceXT weren’t being taken seriously and if they were not careful they'd be overlooked. Something that is frighteningly similar to the battles I face on a regular basis.
The other concern was that it looked like I was the only one that cared. While I was prepared for the challenge I was worried I’d be reinforcing stereotypes (someone in a wheelchair complaining because that’s all we are capable of). Once again I knew I had to get over myself if I wanted to make a difference.
So I took to Twitter saying the match was as an injustice thinking it would probably be lost in cyberspace.
In less than an hour I was proven wrong. Mr Juicy responded to my tweet and put it on his Facebook page. He encouraged his fan base to harass MCW management with #JusticeforJuiceXT. I didn’t need to be told twice and mentioned it as much as I could.
About a month later at MCW Ascension JuiceXT became the new tag team champions. Mr Juicy as promised did get on the back of my wheelchair after the match. Not only this I was able to kiss both belts just like one of my idols Bret Hart would have, which is the ultimate sign of respect in the wrestling world. Rather than go through it all just look at the photo below. It sums up why it’s one of the best experiences of my life.
For starters because people with disability have lives and can participate in all areas of life. The man behind Mr Juicy and I have been in contact since Ascension to discuss this blog. Without him giving away too many secrets I wanted to know the influence #JusticeforJuiceXT had behind the scenes. He indicated I had helped initiate how they won the titles. I have also managed to raise my profile with MCW. People have noticed that I am taking them seriously but let’s get back to NDIS.
In that photo I am not contemplating the NDIS whether it be good, bad or indifferent. I look like someone that doesn’t need it, which leads to the question. Is the NDIS going to help me progress with my life? I have serious doubts. It doesn’t seem to be lessening the load on people with disability and their families.
The defence is this isn't what the NDIS is aiming to do. This may be so but by not continuing to make the point I am neglecting my role. That being to talk about the realities of life to assist people with disability and their families.
I have accepted that fighting bureaucracy is what I'll be doing forever. This doesn’t mean I have to like it. People with disability and their families have endless appointments and meetings, many of which are a waste of time. The effect this has is not spoken about nearly enough if at all.
I know the NDIS isn't doing enough about it, simply due to the amount of fear it has created. This is particularly difficult to comprehend because if I were to take society’s view of people with disability I wouldn’t leave the house. Of course I am committed to breaking down this barrier. Not all of us are though so it would be great to see the NDIS recognise this. I feel I am on to something with the E words so I’ll keep repeating them. Encouragement, empowerment and effort, that’s what people with disability and their families need most.
And for those that think I am being pessimistic about the NDIS I can see what you're saying but I disagree. I think I'm being very positive because I am sick of missing out. And this will always be the message to people with disability and their families, don't wait for the NDIS. Look outside the sector for opportunities and experiences. It’s the best way to learn what you actually want and need.
Because when reflecting on the significance of #JusticeforJuiceXT it is obvious. I got something I wanted and that hasn’t happened enough. And now that I am having experiences like this my perspective is changing.
Like everybody I am wanting more and so now I see how the NDIS is not going to be enough. Given this I am determined to find alternatives. As disappointing as this sounds I suggest people with disability and their families do the same.
