Since 1992, International Day of Persons with Disabilities has been celebrated annually on December 3 throughout the world.
The theme this year is “Achieving 17 Goals for the Future We Want”. This notes the recent adoption of the 17 Sustainable Development Goals and the role of these goals in building a more inclusive and equitable world for persons with disabilities. This year’s objectives include assessing the current status of the Convention on the Rights of Persons with Disabilities and laying the foundation for a future of greater inclusion for persons with disabilities.
Once again I am left with that blank expression on my face. What does it all mean? Do I really care? Couldn’t there be a theme that is more appealing to society and God forbid people with disability and their families?
But if you think this is going to turn into a negative rant about International Day of People with Disability, you’re wrong. Spending 6 years working in a Council definitely changed my perspective. More importantly though it’s my friendship with Alisha where I gained a greater appreciation for the day.
I met Alisha during my time at Council and it’s impossible for me to not think about her on December 3. Even though this year it happens on a Saturday I am sure she is somewhere doing something meaningful. She has told me many times it’s one of her favourite days of the year. I am so impressed with what she’s said that it’s on my to do list to one year spend the day with her.
Through Alisha the resentment I had towards the day has subsided. I am too stubborn to let it disappear. Now my frustration and disappointment is more focused. In my opinion International Day should be like a public holiday.
The human rights aspect, the eternal struggle, let’s put it all side for one day. How about the world is a better place because people with disability are in it? Without doubt highlight what people with disability are achieving in all forms of life. Not just athletes with disability.
And what about the wonderful disability sector. Attendant care agencies in particular could do so much. Free passes to screenings of films about disability. Have a guest speaker talk to the people you manage. Combine with an employment service to showcase opportunities for people with disability. The options are endless and while there will be plenty going on it’s not enough. This year I only received one invitation to an event. That’s incredibly disheartening.
Because as content as I am I never lose sight of the fact that people with disability need assurances. International Day is the perfect time to give these assurances. To show the world, people with disability and their families what can be done rather than what can’t.
And obviously it’s alright to be disabled. It’s actually more than alright. I will drive myself mad proving this. I am dedicated to this every day but it’s nice to have a reminder every December 3.
So as always happy international Day to you Dale. Accept that we are wheelchair brothers for life.
And Alisha I should write a blog about your wedding day at some point. Until I do just this one story, which sums up everything.
I just made it in time for Alisha’s wedding, somehow finding a position where I could see without being disruptive. This is always difficult particularly when you don’t know anybody. Not being traditional Alisha and now husband Simon seemingly came out of nowhere and are at the stage area ready to go. As a man and someone with disability my biggest fear is whether I have an impact on people so what happened next is something I’ll never forget.
Right before the wedding started Alisha looks at me and asks if I got there alright. She then asks if I can I see properly. I nodded quickly thinking for goodness sake get back to getting married. Needless to say our friendship is a little significant.
Happy International Day Alisha, wish I was with you.
Friday, December 2, 2016
Wednesday, November 23, 2016
0003 All Star Comics, Sexpo
In this episode of The Lachlan McLeod Show, Lachlan discusses Local Comic Shop Day/Back Issue and Toy Sale at All Star Comics and Sexpo.
Thursday, November 17, 2016
0002 Trump, Proposition 60, All Star Comics
In this episode of The Lachlan McLeod Show, Lachlan discusses Donald Trump's victory and Proposition 60.
Wednesday, October 12, 2016
Why families need support too? Part 1
As the electric current charges through my wrist my pain threshold is tested. It continues the longer the machine stays on. Just when I feel like I can’t take any more my beloved doctor says turn it off. I breathe a sigh of relief whilst being injected with an extremely long needle. I don’t know how many injections I receive because I am not in the best frame of mind to concentrate on anything. Soon enough the needle is removed, I am cleaned up and heading home, relieved I only require Botox every six months.
Afterwards I settle down quickly and then my father brings me back to earth. He tells me that it’s hell watching me go through that. With my father nearing 70 I am surprised by his reaction. In my mind he has seen it all and it’s not that bad compared to what else I’ve been through. So hearing this from him was the reality check I needed to get back to writing.
In recent years I’ve become clear about what my purpose is. I want to break down stereotypes to improve life for people with disability and their families. I have been reasonably committed to the family aspect because of my own experiences. Having said that it has been from listening to others that made me realise more needed to be done.
Let’s get the biggest issue out of the way early. As accepting as I am you are never going to hear prospective parents say if all goes well our child will be disabled. This doesn’t mean parents don’t love their children no matter what or who they are. It’s recognising that there is shock and depression that comes with families with disability. The impact and effects lasting a lifetime, as they should.
For starters medically there is endless appointments. It could be x-rays, operations, procedures, tests or equipment and that’s not giving it much thought. There is also no getting around it, particularly if you’re taking life seriously. Currently it seems like I have more appointments that relate to my disability than ever before. To ease the tension, I constantly joke that father son bonding time happens in the waiting room of hospitals. As compassionate as I am towards parents in similar situations I still consider this the easy part.
The most challenging part I believe is the eternal struggle. Families with disability find themselves in a world where they have to fight for everything. Whether it be getting an education or a supposedly routine family outing it’s made more difficult than it needs to be. The scrutiny you are put under for living life is absolute cruelty. There is the constant stares from society who make it seem they want disability to remain hidden. Worse still is to be continually asked that horrible question why would you want to do that? I don’t know what is more upsetting about this. The amount of times it’s asked or that it’s generally so called disability experts that it comes from.
This is why I find it incredibly unfair when families are seen as a hindrance to the progression of people with disability. In many instances this is true but it is an easy way to look at a complex situation. Parents want to protect and do what is best for their child. Faced with a relentless battle that shows no signs of ending I am never surprised to see families with disability jaded about it all. I myself admit that it would be easier if I just stayed at home.
So rather than just highlight the problem and in many ways only state what we already know, I thought I would offer up some advice. From the NDIS to all other disability services it gets down to what are you actually offering. Will you be able to lessen the stress/pressure on people with disability and their family? Are you going to be able to improve the lives of people with disability and their families? If the answer is maybe, please come back when you can definitely do this, we have enough going on as it is.
And as for therapists, planners and doctors try to remember that what you see is for a limited time. The more interested and involved you are the better life is. Usually people with disability and their families feel like they are working against someone. If you can demonstrate that you’re going to work with them you have removed a huge barrier.
Which of course leads to my final and favourite point. Imagine if the needs of people with disability and their families were taken more seriously. This could mean we end up having more time. This could lead us to spending parts of our week having fun.
Although there is probably a form that needs to be filled in to assess whether I’m entitled to have fun. Then I will be put on a waiting list and sometime in 2018 someone will visit me to go over how I intend to have fun. From there I will be told I can only have some of what I originally asked for. I will break the news to my family and we will shake our heads in disbelief, mostly because we should have predicted this.
For those that are unaware of how the disability sector works yes I am joking but no I am not exaggerating. That is pretty much what people with disability and their families go through on a regular basis.
And the sooner we get away from this the better. Something I’m obviously determined to do.
Tuesday, May 3, 2016
Why I am apprehensive about the NDIS? Part 2
I am officially over the NDIS. Once the Turnbull Government started talking budget cuts, I became incredibly disillusioned. Even though I have been suspicious from the beginning it’s devastating that my life still comes down to money.
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.
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.
Monday, February 22, 2016
Why I am apprehensive about the NDIS? Part 1
Bill Shorten is a God when it comes to disability. There are people who have done more, but politically he is unsurpassed. He genuinely understands what people with disability need. I once heard him speak and it was a revelation. He had worked out that people with disability are being held back by bureaucracy and a lack of funding and resources. He was clearly motivated by this because he initiated the National Disability Insurance Scheme (NDIS). For that I will be forever grateful to him. It gave national exposure to the challenges people with disability face.
But that’s where my enthusiasm for the NDIS ends.
It claims to be a new way to support people with disability. Allegedly, for the first time, I can choose what I need. Something I consider both complicating and confusing.
As much as I will continue to avoid having a militant attitude I am dedicated to demonstrating the neglect people with disability go through. The description of the NDIS are just words to me. This is because it sounds similar to those frightening three letters ISP (Individual Support Packages).
ISP claimed to offer individual support and choice. It went on promising greater flexibility supposedly to meet your needs. In my case I would look to increase my personal care hours for a start. Then I would look at upgrading the equipment I needed. I didn’t even get that far. The funding I was entitled to only covered my current personal care schedule. I was ineligible for more hours and there was nothing left for anything else. Eventually I found out I could obtain some equipment with an ISP. In arguably one of the worst meetings I have ever had I was told, in my home, I could get funding for equipment. All I would have to do is reduce my personal care hours per week to save up the money. Needless to say I didn’t take up their so-called generous offer and am still waiting for ISP to give me something useful. It’s because of situations like this that a familiar saying when planning for people with disability is “you have choice, providing it's on the list in front of you.”
This is where NDIS concerns me. ISP is just one of the many initiatives that have let me down. State Wide Equipment Program, case managers, employment services, it goes on. NDIS appears to be oblivious to all this.
If I am asked what I want my response is for Sting to win the WWE title, JuiceXT to become MCW tag team champions and Saxon to tour Australia. Let me be clear that all that is important but it is to deflect away from my disability. This is because the question what do I want scares me. Will the NDIS allow me to create a life with attendant care hours that are flexible to my needs on any given week? Can I receive physiotherapy, hydrotherapy or whatever other therapy I may need in the future? Will I be able to get equipment I need within a reasonable timeframe? Does the NDIS planner understand the sector and therefore will encourage me to ask for more? I have two years to contemplate all this but I have low expectations and can’t wait for it. Everyone I trust in the disability sector tends to agree telling me “don't expect it to change your life.”
I have much more to come on this but it would be nice to know that the NDIS provided guarantees. With there already talk of decreasing the budget there is already compromise occurring. This again makes it seem like it’s going to be full of false promises and that’s never a good sign. NDIS could very well be history repeating itself.
And this is probably my biggest fear.
The way it’s been presented it’s like I’ve been asked to ignore my life to this point. A common phrase now in the disability sector is to be NDIS ready. Organisations are scurrying around worrying about what this means for them. Supposedly they may lose business. This deserves more attention but simply I don’t know what the worry is because NDIS won’t mean less people with disability. So I believe most agencies are pretty safe. A genuine question though is will there be the same effort put into getting people with disability NDIS ready? I certainly hope so because I have absolutely no shame in saying I am not ready for it and I don’t think it’s fair that I should be.
I’m sure I’m not the only one that feels this way.
But that’s where my enthusiasm for the NDIS ends.
It claims to be a new way to support people with disability. Allegedly, for the first time, I can choose what I need. Something I consider both complicating and confusing.
As much as I will continue to avoid having a militant attitude I am dedicated to demonstrating the neglect people with disability go through. The description of the NDIS are just words to me. This is because it sounds similar to those frightening three letters ISP (Individual Support Packages).
ISP claimed to offer individual support and choice. It went on promising greater flexibility supposedly to meet your needs. In my case I would look to increase my personal care hours for a start. Then I would look at upgrading the equipment I needed. I didn’t even get that far. The funding I was entitled to only covered my current personal care schedule. I was ineligible for more hours and there was nothing left for anything else. Eventually I found out I could obtain some equipment with an ISP. In arguably one of the worst meetings I have ever had I was told, in my home, I could get funding for equipment. All I would have to do is reduce my personal care hours per week to save up the money. Needless to say I didn’t take up their so-called generous offer and am still waiting for ISP to give me something useful. It’s because of situations like this that a familiar saying when planning for people with disability is “you have choice, providing it's on the list in front of you.”
This is where NDIS concerns me. ISP is just one of the many initiatives that have let me down. State Wide Equipment Program, case managers, employment services, it goes on. NDIS appears to be oblivious to all this.
If I am asked what I want my response is for Sting to win the WWE title, JuiceXT to become MCW tag team champions and Saxon to tour Australia. Let me be clear that all that is important but it is to deflect away from my disability. This is because the question what do I want scares me. Will the NDIS allow me to create a life with attendant care hours that are flexible to my needs on any given week? Can I receive physiotherapy, hydrotherapy or whatever other therapy I may need in the future? Will I be able to get equipment I need within a reasonable timeframe? Does the NDIS planner understand the sector and therefore will encourage me to ask for more? I have two years to contemplate all this but I have low expectations and can’t wait for it. Everyone I trust in the disability sector tends to agree telling me “don't expect it to change your life.”
I have much more to come on this but it would be nice to know that the NDIS provided guarantees. With there already talk of decreasing the budget there is already compromise occurring. This again makes it seem like it’s going to be full of false promises and that’s never a good sign. NDIS could very well be history repeating itself.
And this is probably my biggest fear.
The way it’s been presented it’s like I’ve been asked to ignore my life to this point. A common phrase now in the disability sector is to be NDIS ready. Organisations are scurrying around worrying about what this means for them. Supposedly they may lose business. This deserves more attention but simply I don’t know what the worry is because NDIS won’t mean less people with disability. So I believe most agencies are pretty safe. A genuine question though is will there be the same effort put into getting people with disability NDIS ready? I certainly hope so because I have absolutely no shame in saying I am not ready for it and I don’t think it’s fair that I should be.
I’m sure I’m not the only one that feels this way.
Wednesday, February 3, 2016
It’s not even a holiday
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.
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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