Why I am apprehensive about the NDIS? Part 3

Last year it was 20 years since I left high school. While there was a reunion I had no intention of going. Even if some of my favourite girls contacted me prior to it saying they were still single and wanted to see me I doubt I’d have gone.

Put it this way someday I plan to write a book and I already know the chapter on high school will be called hell on earth. No matter how many times I have said I hated it, no one has ever truly believed me.

I did have some amazing experiences and friendships during high school, that wasn’t the problem. The problem was that what I remember most is that everything was a battle.

I was forced to do subjects that were impractical meaning they were pointless. Science arguably the best example of this. Being expected to write a report on an experiment I could not possibly do remains one of the greatest mysteries of my life. Then again I also did physical education for too long because it was compulsory.

The most challenging part though was the countless meetings my parents and I attended. There were discussions about access issues, my less than impressive report cards and my subject choices were continually scrutinised.

A lot of this had to do with the inflexibility of the education department. I am still haunted by the fact that in year 12 the Maths and English exams were on the same day. Add in the extra time I was allocated and I was at school similar hours of someone in full time employment. I think this is a horrible situation for anyone but for people with disability it’s too much.

I didn’t have the capacity to understand it all then but I see now that in high school I was ostracised. I definitely feel my teenage years were taken from me. It is incredibly difficult to hear people talk about wagging, drinking, smoking and chasing girls in high school. The memories of having fun from that period of my life are very few.

And while my VCE results got me to university, I let more tears out about them than anything else. I think regrets are stupid, I just felt my score didn’t reflect what I had done in the year. It was a demoralising end to a dark part of my life. The scars from feeling guilty for wanting what most other people my age wanted will always be with me. Mostly because while we are taught the harder you work, the luckier you get this is difficult to comprehend. For people with disability the effort that is put in, generally isn’t worth the reward.

Yet for all the depression I went through I am grateful. At 18, while I didn’t know it all, I felt I knew my life would be excruciatingly unfair reasonably often. This meant I needed to be more determined and patient than most.

The real positives to come out of high school is that my love of heavy metal, wrestling and comics will last forever. My interests balance out the medical appointments and various other boring tasks that come with having disability.

It’s also propelled me to continually encourage people with disability and their families to strive for more. Knowing that I have missed out has proved to be incredibly valuable. Through this I have learnt to appreciate life and I seem to do this better than most. And while generally my focus is for people with disability to improve their lives, I am finding that able bodied people need help with this too. I am often in disbelief at what can consume a person’s thoughts. An average meal or an insincere text message can make people want to give up. Seriously if these are the biggest issues in your life, you are doing well.

The negatives from high school is I can feel the exact opposite. I wish there was research into the psychological impact accepting less has on people with disability. I have been explaining what I’m going through to get my new wheelchair and people are disgusted. And eventually it gets to why don’t I do something about it? Of course this is where sadly I point out that I’m working with the best people available and I have no other choice. To me this is the greatest challenge for everyone associated with disability. How do you improve your life when you have little to no concept of what better is? To add to the frustration the disability sector are largely responsible for this as they continue to support mediocre at best services. The sector’s inability to recognise this is in my opinion the biggest reason people with disability struggle in life.

And this is why I am writing a series of blogs about the NDIS. My high school experience is not the worst thing you will read about disability but that’s not the point. The point is that people with disability have been treated extremely poorly by services we were supposed to be able to trust. The NDIS continues on unaware of this. That’s disheartening when once again we were told it was going to be different.

Unfortunately mostly I hear about inexperienced planners with minimal understanding of disability and that the NDIS is another process full of barriers. Bizarrely though this keeps me motivated. I might not change anything but I can demonstrate we’ve had enough experience of that in our lifetime.  After all it’s disappointing that society is not more aware of this.

0005 New wheelchair, Paul Dini

In this episode of The Lachlan McLeod Show, Lachlan discusses the ups and downs of getting his new wheelchair. He then talks about meeting comic writer Paul Dini.

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0004 Sexpo, Sin City

In this episode of The Lachlan McLeod Show, Lachlan discusses his adventures at Sexpo. He particularly focuses on his encounter with Sin City Gentleman’s Club. He explains how this experience demonstrated that people with disability are far more capable than most truly believe.

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When it’s International Day of Persons with Disabilities you have no choice

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.

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. 

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0002 Trump, Proposition 60, All Star Comics

In this  episode of The Lachlan McLeod Show, Lachlan discusses Donald Trump's victory and Proposition 60.

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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.