A Hearing Clusterfuck

Do hearing people really rule the world. You know those people that talk endlessly on their phones. Listen to music. Man (person) receptions. Look after our money. All of our politicians. Most of our CEOs etc.  Do they really rule the world? After the week I have had you can only ask – How the fuck?

I have never really been into hearing bashing. They are nice people, mostly. Indeed many of them are my friends. My children are hearing, sorry about that fellas! Hearing people try hard, they really do. Some are even helpful. But these last few weeks they have been an absolute clusterfuck.

You see I am buying a house with my Super funds. It is a bit of a dream home. I can retire in a few years and move in. I discovered that I have a very healthy Super fund so decided to self manage some of it. Buy the house of my dreams with Super. Have the rent accumulate for a few years  —- $25 000 a year rent … Nice little retirement addition. Meanwhile realestate increases in value. When I retire sell my current home. Cash goes to paying a small loan on the new house so I can get tax breaks. And a Nice little profit. Dreamy. But then those bloody hearing people got involved.

It started with the broker. Broker applying for a small loan for me for those tax breaks. Gets told to please email me. Asks me for some info – You know ID, Super statements, payslips and the like. I oblige and then Christmas comes, everything shuts down – All good.  

The new year comes. Finance approval is written into the contract. Must be settled by a certain date etc. It’s getting closer to the date. A little worried I emailed the broker, who knows I am deaf, asking if anything more is needed.  Next day he rings me on the phone. He passed University this guy, so I assume he has a smattering of ability. So this number comes up, I search it on Google (Cos I am a good problem solver like that) and woe and betide, it’s the broker.

I resist the urge to email him and call him a Wally. Instead I send him a nice email and say please don’t call I am deaf, please email as should be noted on file. So a day or so later he emails asking me for documents. Most I have already sent him. I remind him of this but send them again.

So, it looks good. Finance approval date is coming closer. Next day actually. And what happens? He rings me. This time I am a little less patient. I firmly, but still nicely, ask him to please email as calling is pointless. He emails me and asks me again for yet more documents, many I have already sent him.

This time I hit the roof. I point out that the finance date will lapse and it’s his fault. I point out he keeps ringing and he needs to email as he is wasting valuable time. I point out he already has most of the documents he has asked for and I ask why the hell he could not have asked for all the documents at the start, not in this pish posh, mish mash way. (Yes, I used those words.)

So, he emails back. Good fellow, he has finally learnt. He emails back and says sorry, and I quote, ” .. I am sure you can appreciate it is difficult to communicate effectively with a deaf person.” By this time my patience is fully exhausted. I tell him that I beg to differ and rather that it’s bloody difficult to communicate with hearing people who can’t take a few seconds to email a question. God grant me strength.

But anyway, we needed to ask for an extension. This needed to go through my conveyancer. My conveyancer has known me a few years having handled the purchase of my current house. So we need them to liaise with the vendor so that we can amend the contract.

Conveyancer, bless their cotton socks, rings me.  I go through the routine, Google the number and affirm that it’s the conveyancer. Politely, I remind the Conveyancer that I am deaf and it should be noted on the file. She emails back and apologises, “No one told me.” she says in her defence. I resist the temptation to email back and recommend that she, “Read the fucking files.” Instead I say, “Please note it on file so that this does not occur again.” Two days later she rings me, then emails me, “Sorry I forgot.”

And it should have ended there but it didn’t. You see the person responsible for organising the rollover to my self managed fund (Who communicates beautifully by email by the way) sent the Super fund the wrong form. So the Super fund, who also have on file that I am deaf, ring me  … No, I am not joking.

As it stands now, we are requesting a second extension because the broker took too long in getting the documents in. The vendor of the property I am purchasing is understandably antsy because they have their own property to settle.

Meanwhile, the people involved are fighting amongst themselves and blaming each other for the delays. As I type this my phone has just rung and this time Google tells me its the real estate agent. FUCK!

And these people run our world – We are doomed!!!

The Myth of Choice and Control

The National Disability Insurance Scheme (NDIS) is on track to put choice and control squarely in the hands of people with disability, their families and carers.

The NDIS was expressly created to replace a fragmented service system that gave people with disability little choice, and to move away from the decades-old practice of providing block funding directly to service providers.

Participant choice and control has always been, and will remain, central to the delivery of the NDIS. Funding is provided to people with disability, who can then choose how best to use those funds on the supports and services that will help them to meet their needs and goals.

(Taken from “Pricing update and more support for participant choice and control, NDIS Website)

Take a look at this line from the last paragraph of the above, “Participant choice and control has always been, and will remain, central to the delivery of the NDIS.” I am here to tell you that this is almost a myth. Certainly, now that people with a disability do not have to beg to big organisations receiving block funding for support, choice is a lot better. But I am not sure choice and control as people with a disability see it and choice and control as the NDIA see it are the same thing. In fact, I think they are worlds apart.

Yesterday I was engaged in a discussion on the NDIS Grassroots Page. The page has in excess of 53 000 members. Some of them are service providers and indeed executives of the NDIA. They kind of spy on people with a disability to see what they are saying. When I worked within the NDIS environment the administrators would sometimes tell me to be careful of what I was saying. “Gary ….”, they would warn me, “ Be careful the NDIA watch this page and we need you within.”

But anyway, the discussion yesterday centred around a guy that wanted meal delivery. He simply wanted some independence to have well cooked and healthy meals delivered to his home. He is, apparently, supported through the NDIA Complex Planners unit. This suggests he has some high support needs. Most likely he can’t shop or cook on his own. He wanted meal delivery but was refused.

The reason being that he had high support worker hours. The Complex Planner deemed that the support worker could do all of the participants shopping and cooking and that was enough. I sure hope his support worker is a good cook and knows how to handle food properly. Point being is that, if you follow what has been said above, the man should be able to make a choice as to how to use his funding … The NDIA say – “Funding is provided to people with disability, who can then choose how best to use those funds on the supports and services that will help them to meet their needs and goals.”

Ok the man says he wants healthy home delivered food, and thats his goal. It is certainly reasonable and necessary because he can neither shop independently nor cook. His support worker could help to heat up the delivered food and provide support for feeding if needed. A perfectly reasonable request. “NO!” says the Complex Planner because his support worker can shop and cook for him. But this is not what the person wants. He wants healthy, cooked and delivered meals. He would still pay for the food but would use NDIS funds for preparation and delivery.

This is how he wants to use his funding but Complex Planner has said no because, and I quote, “Healthy food is a health responsibility.”  Apparently, also, the planner sought advise from the NDIA Technical Advise Team (TAT) who deemed it a reasonable request but the planner overruled them. Choice and control?  Clearly it is anything but.

And you know I reckon the Complex Planner has support within the NDIA for this hard nosed decision. You can hear them clapping from here. “Oh well done ..” they are probably saying, “Its all about value for money …”  One’s health, one’s choice, one’s desires – Nah, doesn’t come into it. The participant is rightly frustrated and angry. His independence, dignity and ability to make his own decisions has been taken away from him. It is wrong.

Recently there has been much discussion about NDIS Ministers comments that NDIS funding should not be used to meet a participant sexual needs. The Minister sought to sensationalise things by publicly stating that NDIS funding was not going to be used for prostitutes on his watch. That wonderful example off a human being, Pauline Hanson, jumped on the  bandwagon supporting him. The gist of it was that they wanted to pass legislation to prevent any NDIS funding being used to meet a participants needs around sex and pleasure.

There are many participants who, for whatever reason, cannot meet their needs for sex and pleasure. This can be physical, might be related to mobility needs or it could even be related to behavioural, communication and social needs. Like all human beings, people with a disability have desires and needs around sex. This could be help to have sex or modified aids. Definitely reasonable and necessary and certainly meets the NDIS mantra of an “Ordinary Life.”

But Minister Robert is having none of this. He is besides himself that a person with a disability might want intimacy, pleasure or just good old fashioned sex. GOD FORBID – And apparently thats a large part of his ire, that this conflicts with his religious beliefs. Choice and control?  Whose choice and whose control? Seems like yet another non-disabled person deciding what fits the mantra!

There are way too many people that work within the NDIS environment that see themselves as gatekeepers. They don’t see themselves as enablers. An enabler looks at the legislation and says, “How can I use this legislation so that the person with a disability can achieve their goals?” The gatekeeper does the opposite and says, “How can I save the tax payer some money …” Or worse, like Minister Robert, they try to impose their own moral standards on others.

Sadly there are too few of the former and too many of the latter within the NDIS. Choice and control is largely a myth. This is why parents have to give up work because the NDIS decides that after school care have to provide disability support for kids with a disability. Or they say it’s a parental responsibility. After school care is largely run by private contractors with no clue about disability meaning kids with a disability are often not be supported properly. The fact that after school care can contribute to  social, communication and physical development of the child never seems to come into consideration.

Deaf people cant choose to study with private providers who have no extra funding for disability support. Why? because the NDIS says that disability support for study is a state responsibility. This ruling conveniently forgets that this only relates to state funded courses and not private organisations. This means the Deaf students choice and control of what they want to study and where is severely limited. I have three people who I am assisting currently who wish to study MBA or computer courses with private providers but cannot because the NDIS refuses to acknowledge that private providers do not receive support from State Governments for disability support.

Let’s not get started on Independent Assessments where people with a disability must use a professional appointed by the NDIS and not the professionals that have worked with them and know their issues over many years.

Choice and Control?? It exists in pockets of the NDIS and its probably better now than it was before the NDIS, but largely it is a myth. Choice and control is just that. It should not be limited, as it is now, by the moral views and assumptions of people within the NDIS who are mostly non-disabled. Ableism at its worst!

Innate Abelism

Ableism is defined simply in the dictionary as – “Discrimination in favour of able-bodied people” Sadly, I am often guilty of it too. I try my best to not be ableist but sometimes I fail spectacularly. This happened yesterday in a kind of reverse ableist way. There was an article about deaf cooking. In this article the author outlined a number of perils for the deaf cook. Most of them involved not hearing things. So you don’t hear the oven alarm and you burn the roast. You dont hear the microwave so your food stays in there all day cos you forgot you put it there. You don’t hear the sizzle in the pan so you burn your food because the oil was too hot and so on. You can read the article HERE

I rolled my eyes at this and fired off a cynical Facebook post. I posted the article with a sarcastic header “Woe is me” Cynically, I belittled the author because, paradoxically, I found her views ableist. To me anyway. You see whilst there are dangers in cooking, many deaf people have developed our own little life skills to deal with the dangers. Sometimes this is setting our watches so we get a vibrating alert. For me I check oil temperature with a cube of bread. You chuck a little cube in and watch it fry golden brown. You can tell this way, simply by the time it takes, whether the oil is too hot or not.

But anyway, this insensitive attempt at humour generated some interesting comments and reminded me that although I have learnt these skills and adjustments, not everyone has. For many it is a real issue and concern that causes them a great deal of anxiety. There were people that worried about things burning, boiling over, blowing up and so on. There were tales of pots and cookware that needed replacing because of other issues like ADHD where distractions led to lack of attention. Of course what I learnt from this is that everyone has a different deaf experience in life and have developed different skills. Indeed this experience can be different depending on when a person has acquired their hearing loss. I realised that I was being an ableist arsehole .. So to all of you that were offended by my post, I apologise.

My reaction was a defensive response to hearing people that believe hearing is everything. That if you cant hear that you are a danger to yourself and others. Indeed many policies exist that discriminate against deaf people based on hearing. In South Australia a deaf teacher of the deaf was once told she could only teach with a hearing person present lest she she didn’t hear a child in danger. Again in South Australia there is a law, and it still exists I believe, that deaf people cant be truck drivers. It is these ableist attitudes, based on imagined hearing superiority, that led to my response – That said it is not an excuse to be ableist and this innate ableism in me is something that I must constantly check.

But my ableism didn’t stop there. Indeed Friday was a day of faux pas for me. It started with this meme that was posted by a disabled friend of mine.

I jokingly told my friend that he had just upset a whole lot of the Deaf community. I then posted the meme asking what the PC Police would think of this. In my defence I think PC police are important. I am often pulled up by them for making ableist comments, sexist comments and so on. It’s important that they do so because thats how I learn. I am not perfect but I try to do the right thing.

I’ll be honest. I found the meme funny. It’s just the moment in time that the photo was taken. Of course its mid signing and we have no way of knowing what she was actually signing … But in that moment of time — It raised a chuckle in me. However, I should know better because such memes are a trigger for many Deaf people. Many Deaf people were oppressed and denied sign language. Usually because hearing people believed sign languages to be inferior. Apart from this there are others that take great pride in their sign languages and are constantly exposed to ridicule. I should know better. So again I apologise for allowing my innate ableism to get the better of me.

So Friday was a definite F for me. I am an experienced campaigner and I should be more aware and sensitive. Without reservation, I apologise to all I offended.

While we are on abelism let’s get stuck into Stuart Robert. Minister Robert is our erstwhile Minister for the NDIS. He took offence recently to the fact that the courts ruled that the NDIS had a role to play in allowing people with a disability to be active sexually and get support for issues around sex and intimate needs. You can read  Mr Robert’s response HERE 

Minister Robert is beside himself that people with a disability would like to have sex, would like to enjoy pleasures of sex, would like to express their sexuality or would like to be intimate with another. Ignorantly he says that people with a disability are welcome to do whatever they like, as long as they pay for it themselves. That delight of a person, Pauline Hanson, supports him and is on her high horse too. They both want the legislation changed so that issues around sex, sexuality and intimacy cannot be paid for under the NDIS.

To these two ignorant people the sexual needs of people with a disability are all about paying prostitutes. The reference to prostitutes is a cynical ploy to shock and narrow the focus of the debate to be all about paid sex. That is not to say that prostitutes do not have a place in assisting people with a disability to enjoy and experience sexual intimacy, but the prostitutes are among a whole range of sex workers and they are not all part of a seedy unlawful profession that the likes of Robert and Hanson want to portray.

The correct term to use is sex workers. This can include sex therapist, sexologist and specialist that can design aids and activities in a way that allows people with a disability to enjoy and experience sexual intimacy. Sex workers also can include professionals that assist  people with a disability for the purpose of having children of their own. These valuable and necessary professionals have all been labelled by Robert and Hanson as “Prostitutes”

For whatever reason, Robert and Hanson fail to realise that there are many reasons why people with a disability find it difficult to engage in intimacy and sexual activity. This can be related to lack of mobility, lack of limbs, coordination and so on. Adjustments and supports are often needed and are a cost of disability. This is precisely why the NDIS was established, to meet the cost of disability. The NDIS will pay for adjustments to allow people to drive cars, get around their home and so on … But for some reason adjustments and support around sex are considered taboo by many.

The attitudes of Robert and Hanson are the worst kind of ableism. They seek to control and deny through the power that they hold. They, and people of their ilk, especially if they employed within the NDIS, need to be held to account.

But for me, to all those I offended through my innate ableism, I am sorry and I thank you for pulling me up on it. I, especially, should know better!