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Why we should worry about Gaye Lyons

runaway-jurorEager enthusiasm about the opportunity to do one’s civic duty and contribute towards giving a fellow Australian a fair trial is not really the normal response to a jury summons in Australia. Far more likely is that within 24 hours of receiving a jury duty letter, our grandma will die, our leg will get broken, we will stop showering and shaving whilst losing our dress sense, and we will become members of an indispensable profession with a current emergency to deal with.

So when Ms Gaye Lyons from, Queensland, got a letter telling her should could never ever do jury duty, why on earth did she go all the way to Australia’s highest court to challenge it? And why should we care that she lost?

What happened: (for the full judgement look here)

auslan_bannerGiven the title of this blog, you might have guessed one of the twists in this tale: Ms Lyons is deaf and communicates through an Auslan interpreter.

Ms Lyons was summoned for jury service in Queensland, and she wrote back that she was looking forward to it, and that they could get her an Auslan interpreter through XYZ service. Those in charge had their little panic and wrote back that they were sorry they didn’t realise she was deaf and as a result she couldn’t participate. Ms Lyons immediately “saw red” as she puts it. She claimed that she had been discriminated against in violation of Queensland’s Anti-Discrimination Act, and went through various tribunal and court cases to prove it until she got to the High Court.

Now that we as a society have moved past the idea that only rich white men should run the world, how can we possibly say that traditions which stop certain groups of Australians being part of something important should be implied when the courts interpret the law?

The High Court said they didnt have to worry about discrimination law becauseyou can’t discriminate by not doing something that you have no legal power to do. The Jury Act section 4 says who is and isn’t qualified to be a juror. It says that “The following persons are not eligible for jury service:… a person who has a physical or mental disability that makes the person incapable of effectively performing the functions of a juror.” Next,  it gives the sheriff a job of organising for all the people who are allowed to do jury service to come in for possible selection as jurors. The High Court said Ms Lyons fell under the definition of people”incapable of performing the functions of a juror,” and so organising for her to come in simply wasn’t the Sheriff’s job, so it couldn’t be discrimination.

Keep_Out_Door_Si_4d9136e59e061.jpgThe main reason they gave that she was incapable of performing the functions of juror was that the interpreter would be a thirteenth person in the jury room whilst they were deliberating and this is not allowed.  Other concerns were discussed as well. The government argued there would be no way of checking whether the interpreter got it right. The High Court said  the law didn’t give any clear directions on how the interpreter thing would work when it comes to things like oaths.  But these other concerns were mainly used as proof that when the government changed the law in 1995, they didn’t mean to change the old traditional common law rule that no extra people are allowed in the jury room when they are talking.

walking-backwards.jpgDid you get that? The government actually changed the law in 1995. It used to say outright “deaf, dumb and blind” people can’t be on juries. The Queensland government changed the law in 1995 to remove that outright prohibition. In fact, the 1995 Jury Act is now very similar to what was recommended by the New South Wales Law Reform Commission as a way to  to ALLOW deaf people onto juries. and the High Court just went right ahead and implied the prohibition on them back in! The High Court took Australia backwards into violation of international human rights law when the government had pulled us out. On what basis were they thinking this was ok?

Why we should care: 

Trial by jury is a serious matter. Being a juror is a foundational ihuman-rightsncident of citizenship enshrined in our constitution, . It is based on the idea that you deserve to be tried by a cross-section of your peers. This means that excluding a person from jury duty on the basis of a disability is a serious statement about whether people with disabilities really are the peers of people without disabilities on the one hand, and on the other it is denying all people with disabilities the right to a proper trial. I am not the only who thinks so. Two other deaf Australia, Gemma Beasely, and Michael Lockrey, were turned down for jury duty. They took their case to the UN and won. We are now in violation of international law.

glassesBut there is an even bigger problem. When a court makes a decision like this, it shows its values and attitudes, and claims to speak for the values and attitudes of society as a whole. The way the High Court handled this case is window on the thinking it will bring to other disability cases in the future. Sadly, The lens through which disability issues will be seen in the future is likely to be full of storm clouds.

Failure number one: Valuing Tradition Over Diversity 

So the law is the law is the law? Well any lawyer will tell you this is far from true. It might look like it at first, but lets have a look more closely. “incapable of performing the functions of a juror,” is surely open to plenty of interpretation depending on what you mean by “incapable” and by “functions of a juror”.It can’t mean “incapable without any help that could turn out to be faulty” because then everyone who wore glasses would have to take them off for jury duty in case they weren’t working properly. It can’t mean incapable of performing the functions in a way this society considers  mainstream and cool, because then only rich white men would be allowed to serve on juries.

Hold on, wait a second…it WAS true that only rich white men were allowed to serve on rich white men on juries.jpgjuries! Until at least the late 1950s in Australia women were considered incapable of performing the functions of jurors properly and weren’t allowed to do so in some parts of Australia, as for “blacks” well they weren’t even voting. Yet the rule about a 13th person in the room  with the jury is  based upon very  old legal tradition that dates back to this kind of pre-diversity era. Remember, the High Court was interpreting what the government DIDN’T say based on the assumption that the traditional rules about juries still applied. Based on these traditions , they said that one of the functions of a juror is to talk to other jurors in the jury room without any other people present. To support this, they quoted old textbooks from 1809 and the like, and only one of the court cases they used to prove the rule was less than fifty years old.

Group thinking.jpgBut traditions like this do evolve. There are other important things to take into account. After all, isn’t a far more important the “function of a juror” to be one of twelve unique points of view which act as a check and a balance on all the other points of view ? The idea that a jury should be representative of the community  is really at the very heart of the reason why have trial by jury. Secrecy, by contrast, is just something that helps it work.  If we wanted a single perfect (*cough*) person who could keep it secret we would have trial by judge.

Now that we as a society have moved past the idea that only rich white men should run the world, how can we possibly say that traditions which stop certain groups of Australians being part of something important should be implied when the courts interpret the law? (Lets remember that indigenous people for whom English is a second or third language are now excluded,  as are migrant women who have lived here for decades and been too isolated to learn the language, or persons with physical disabilities in need of a carer.) Now that international human rights law (which incidentally Australian law is supposedly presumed to be compatible with unless something is obviously to the contrary)  is on the side of inclusion, why is that tradition still there? Most importantly, why isn’t the accused’s right to a fair trial prejudiced by an unrepresentative jury as much as by the presence of thirteenth person who does nothing?

Most importantly, why isn’t the accused’s right to a fair trial prejudiced by an unrepresentative jury as much as by the presence of an interpreter?

In reality, the law has moved on in other countries with similar traditions to Australia, like the US and New Zealand. In New Zealand, their first deaf juror ended up being jury foreman.  In the US, the Court threw out exactly the same thirteenth person argument when someone challenged a deaf juror.  But the Australian High Court obviously doesn’t think that the perspective of people with disabilities  is an important enough perspective in our community that excluding it prejudices a fair trial.

Failure Number Two: The Awful Search and the Fearful Panic: 

hunt.jpgOk now what is probably more important to a lot of lay people: is it fair to allow someone who can’t hear on the jury? What does “incapable” mean?  Its important to know that Ms Lyons admitted she would not be suitable for a case that turned on, say, telling different voices apart. Does it mean she had to be perfect in other ways?

This issue actually bothers me a lot, because it is kind of personal. As soon as people realise someone has a disability they start hunting for possible problems and searching their imagination for scenarios where the person with the disability might not function perfectly. When they find them then the response is “Aha! see, you can’t do it!” All you need is one problem, or even one possible problem that someone thinks of (while they are hunting around their head really hard for one) and off everyone runs in a fearful panic.

There is evidence that deaf people with sign language interpreters do just as well as ordimisunderstanding.jpgnary jurors, and that both of them make mistakes. A key name in the research in Australia is Jemina Napier.  There is also a great report by the NSW Law Reform Commmission, although it is a bit old. It commissioned some research and found that deaf and hearing jurors had equal misunderstanding of the law (hmmm ok not that great but that’s why there are twelve ). A lot people also cite the decades of  American experience (where judges stood up for deaf people) and in discussing that it helps that, unlike here, jurors  can talk about what they did afterwards so they can tell us if the deaf person was a problem . For those interested in knowing more, try here (the author is actually our Disability Discrimination Commissioner now), and here (there is a summary of evidence but you’ll need to scroll a bit).

Seance.jpgEverywhere in life, people with a disability are automatically compared to this mythical model of perfection and normality. That DOES NOT EXIST. Able-bodied jurors are not perfect, and able-bodied jurors  pose problems the law hasn’t specifically mentioned before. If the legislation provided for every possible scenario then law school would be so tedious and time-consuming our heads would explode (ok i know it already comes close…) Able-bodied jurors fall asleep, lose concentration, notice some things and not others, and are just plain brainless boguns. For heaven’s sake, one famous jury case is about a bunch of jurors who held a seance and tried to bring the murder victim back from the dead. The only reason there was a re-trial was that it happened at the hotel not in the jury room. If it had happened in the jury room nobody would ever have known.

Thus I was  bothered by the references to the difficulties with oaths and with organising the practicalities for things which had not been covered specifically in the legislation. And the last straw was the the concern that we can’t check what the interpreter is saying? Seriously!!!? You are right. I can’t believe nobody thought of this before!  Every person convicted based on the evidence of a non-English speaker should get the right to appeal! And while we are at it, what about all the other things in the jury room we can’t check? As for oaths, well, as the NSW Law Reform Commission pointed out “At present while not subject to express confidentiality provisions or oaths court reporters are present when evidence of a sensitive nature is given, for example in closed court.” That happens all the time! But one deaf juror is bad.

Everywhere in life, people with a disability are automatically compared to this mythical model of perfection and normality. That DOES NOT EXIST.

Sadly…our High Court fell victim to the double standard again.

So why should we care?

Here was a situation where the Parliament, had actually taken a step forward.  It was a matter in which practice had already been adjusted to get rid of discrimination against other groups in the past, and in which it has been adjusted to include persons with disabilities in some countries.

Our High Court had the opportunity to follow America’s lead. They decided instead that disability rights were unimportant compared to their traditions and gave in to fear. Let us remember that this is the same High Court who will have the final say in deciding appeals dealing with what can be funded as  “reasonable and necessary supports” for NDIS plans, and who would get to decide an appeal if somebody killed a person with a disability  and claimed they were provoked .

Kudos Ms Lyons. You have a fan here. I for one would love to have you on my jury if I was charged with a crime.  I know the feature image is a cheap play on your name to get views. But let me finish  with a real picture of one of our unsung national heroes, who recently received what she called a “slap in the face” from our High Court.

Gaye Lyons.jpg

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Why not just disappear? Hate crimes are an everyday reality by those want it.

knife+attack+on+Japan+flag
In our world of terrible wars, hospital bombings, drowning children, night club shootings, trucks mowing people down, the news cycle has moved on since Mr Satoshi Uematsu murdered 19 people in a foreign country with 127 million more. It has even moved on since we found out that Australia is being investigated by the UN like some two-thirds world dictatorship for our treatment of prisoners with cognitive disabilities.

Coverage Nt-prison-abuse.jpgof these events tried to emphasize how horrifyingly unusual they were. The Japanese event was  ‘Japan’s worst mass murder since World War II.’  The PM allowed a royal commission into the Four Corners torture of kids in an NT prison, but no further inquiry to see if the problem was broader.

closeup-of-a-pencil-erasing-an-errorBut the reality is that these events are not unusual or outrageous. They throw a spotlight on the horrifically mundane. Uematsu  proudly turned up at the police station, weapon in hand, and boasted of doing society a favour by helping to make this 10% of his country’s population disappear

Mr Uematsu said that “The disabled should all disappear”  and then went about taking out his frustration that they wouldn’t out on them. This was a hate crime. In Western (actually in most) cultures, this is normal behaviour based on thinking that is still acceptable. 

See my very first post about how many “commissions” and “inquiries” have already told us that what went on in the Northern Territory juvenile detention centres has been going on for years against disabled people…but only now its against another group is it coming to light.

The truth of what happens: 

Hate crime by people who wish people with disabilities would disappear is quite endemic really, at least in Western cultures: Here are a few statistics:

  • A download.jpgsummary of  21 top studies from Australia, the US, Britain, Canada, South Africa, Taiwan and even Kiwi-land, endorsed by the World Health Organisation found that children with disabilities are 3.7 times more likely to be victims of physical or sexual violence, and adults were also at much greater risk (1.5 times greater, at minimum).
  • 1.5 is an extremely conservative estimate. US national statistics over mdownload (6)any years suggest people with disabilities of any type are at least twice as likely to be the victims of physical crimes, and these are twice as likely to involve serious violence, the kind of violence that makes you want to disappear, even if you can’t. The Emerson and Roulstone UK study also found that people with disabilities generally are 2.6 times more likely to experience hate crime than people without.
  • The US statistics have been analysed to apply regardless of what disability you have, but if your disability is psychosocial or cognitive, your risk goes through the roof, with a 2014 UK study  finding your risk of hate crime or violent crime is ten or twelve times higher. 

What is Disability Hate Crime?

So hands up you caught me… I’ve been conflating (awesome word there) several ideas Lets have a look:

  • Hate 5545cbf86cf85d38adf038c4a7b3af66.jpgcrime actually been described as a bit of a “slippery concept.” The simplest definition is crime motivated by prejudice.  It has has also been called “bias crime.” That means a hate crime has to have two things. The crime part is fairly easy. That’s defined by the criminal law. It covers anything from graffiti to murder.  The hate part is a bit weirder.   In most parts of America there are special crimes. In New York, for example, it is a crime to commit a crime because of hate (Get that? If a person commits a crime because of hate they commit two crimes: the crime, and the crime of committing the crime for the wrong reason…). But in  Australian jurisdictions, graffiti-ing ableist insults on someone’s front fence is the same crime as graffiti-ing immature penis pictures on the local letterbox. The “hate”  part of the hate crime is to be taken into account in sentencing.
  • So the first problem we have is discrimination, harassment and bullying behaviours are not necessarily crimes. It may be covered by the Disability Discrimination Act. If  it is against a customer, a colleague, employee/contractor or student (by staff not other students) then it may fall into the hazy and mysterious categcartoon-Catherine-Pain-paralympicsory of “disability harassment” (see DDA Part 2 Division 3) but that is not a crime, and notice how limited the situations are.
    •  It is a minor offense to incite  discriminatory behaviour (DDA s 43).Moreover stalking is a crime. There are crimes like serious vilification and racial vilification in many Australian jurisdictions but (surprise suprise) not for people with disabilities!
  • The second problem is very few crimes against people with disabilities would probably be hate crimes, no matter how violent. Someone might not like me because I’m a pain in the backside. If they beat me up, that’s a horrible crime..and if I had a psychosocial disability it might mean I was more likely to fail to read the signs of danger, but it would still not be a hate crime.
  • bullying against autistic children.jpgHowever, if what I just said sounded a bit off, it should.  The fact is, that there is a very fine line between taking advantage of a group’s vulnerability and hating that group. What if John steals a disabled person’s handbag because he thinks they are weaker? And what about if  Jane rubs someone up the wrong way because her psychosocial disability makes her behave in weird annoying ways…does it count as a hate crime if they lash out?
  • There are two ways the law deals with the question of what it means to hate a group of people/type of person. In Australia, if you attack a person with a disability, it is probably not considered a hate crime unless you hate people with disabilities because of their disabilities, and take it out on that person. In some countries, targeting a person because of their membership in a group, whether or not you hate the group, but just because you think the group are soft targets, or any other reason (eg because you think Chinese people are wealthy), is a hate crime.  This is called the “group selection test.” In  New South Wales, however, targeting people on the basis of a trait someone believes that a group has (eg disabled people because they supposedly can’t fight back), is not a hate crime.  In fact its not even considered evidence of prejudice against that group ( I swear, that is what the judge said! Yeah right! Makes no sense. But it does fit with Australian legal trends in discrimination). This is a strict interpretation of the “motive test”. For a discussion. See here.

The underlying problems:

So why is disability hate crime so common and yet not well understood or policed?

download (2)The first problem is that our society really doesn’t care. We all wish the problem would just disappear! In so doing our society is helping those who really want people with disabilities to disappear.

    • As a society, we often make the evil of the crimes disappear when we talk about them. As Dr Sherry points out, we tend to frame violence against people with disabilities using different words like “abuse” and “neglect” rather than “assault”, “robbery” and “rape”.
    • Lyndie_England-e1397340430884Sometimes we make the person with a disability disappear altogether! Recently we have heard reports of autistic children locked in cages, and women with cognitive disabilities being tied to the roof. Yet society often blames the disability. One headline about the disabled woman being tied to the roof went like this “Pressure Causing Disability Carers to Self-Harm as Federal Funding Evaporates.“The woman with the disability and the Abu Graib style actions against her have totally disappeared from the headline!  To see why this is a problem, imagine a headline like this “Stress of Child Care  Causing Single Dads to Turn to Alcohol” when the news was that a man had tied his non-disabled children to the roof. Or how about “White Australians facing Depression Due to Identity Crisis” when someone had tried to rip a hijab off a Muslim. Missing the point much?
    • blind justice.jpgIn Australia, it is perfectly legal, and openly acceptable, to refuse to prosecute a crime because the victim has a disability and this would make it too hard to do so. See, eg, the prosecutorial guidelines for various states. So much for open justice, people with disabilities should definitely disappear from the court-rooms.  If that doesn’t say “We
      don’t care” then I don’t know what does.
  • There is an underlying scary attitude that leaves a nagging feeling in the average person that perhaps disappearance is really the best option.Its not just the general prejudice that exists out there, as described in this excellent article. It is  far more blatant, and sinister
    • In Australia, the relevant government officials must consider deporting a person, and usually do deport a person, along witdownload (3)h their whole family, because that person has a disability. This happens very regularly.   That is literally the same attitude as Mr Uematsu. We are saying “disabled people should disappear.” In many cases, the person will go home to far greater prejudice and far less care, but hey, why do we care? They are not people, they are just a burden that we need to erase.
    • The “disability snuff film” Me before You made 9 million dollars in the first month in Australia, 196 million dollars at the box office worldwide. On Rotten Tomatoes it has a 75% audience like rating. Now I’m not venturing into the question of euthdownload (4).jpganasia for the terminally ill. But here is a man, a new wheelchair user, who lives in a castle and has a beautiful girl in love with him. He has lost all that comes
      with being a high rolling playboy through the fault of our society. (I honestly can’t see how being in a wheelchair inherently robs one of the capacity to speculate on the stock market). And we think its a perfectly viable option for him to kill himself and leave all his money behind to his new girl. How convenient..the burdensome human being disappears but she gets the windfall. Clearly, we think his disappearance is entertaining.

Resources for Improvement: 

With attitudes like the above, it is difficult to see how the problem can be fixed in the short term. However, there is hope:

Ihandcuffsn 2015 there was a shocking 41% rise in disability hate crime prosecutions in the UK. Far from a cause for alarm. This is wonderful news. It was attributed to an awareness campaign among people with disabilities and police. The Disability Hate Crime Network in the UK has educational materials that could be of use to use to us in discussing the issue…at least until we get some local stuff. .
The download (5).jpgMuslim community have an “Islamophobia register” to keep a record of hatred against their community. In our case we have the “disability clothesline” where people can post about incidents of violence and abuse on Facebook. If I had enough people following this blog I would set up a register of more general hateful behaviour too. But lets support this clothesline. Sunlight is the best disinfectant.There is also the disability access wall of shame, where less serious bad behaviour  can be held up to the light.

symbol-easy-read.jpgFor people cognitive disabilities there is an easy read resource for Australian women on physical and sexual violence here. Also, although it comes from the UK this easy-read booklet on disability hate crime generally is also a good resource. IDRS also offer assistance to victims with cognitive disabilities who are reporting to police here.

There is a lot out there on self-defense for people with physical impairments, and for the serious, adaptive martial arts is growing. Judo has been a paralympic sport since 1988, and Tae Kwon Do may come in 2020.I love how it points out that wheelchair users can punch an attacker in the groin more easily in this intro to self-defense for wheelchair users.

For the theoretically inclined like myself, there is the Australian Hate Crime Network with a library of resources here , but it is appallingly poor on the disability front. There is actually quite the a gaping hole there. You are better off hunting down anything by Dr Mark Sherry. There is also the OSCE’s resources. They are much better introductions to the subject, and discuss the issues of whether or not to protect people with disabilities or just race and so on in light of international comparative law, but without completely excluding any lay people.

justice-gavel-and-book.jpgNow, lastly, .I am not a punitive person at heart, and I’m not against free speech either. However, I do think that the idea of attacking a person because their vulnerabilities mean they should disappear is of a fundamentally different character to stabbing your cheating partner. We are very comfortable with the idea of attacking the vulnerable being worse than attacking the powerful. We are also very familiar with the idea of attacking someone because they are of a group we wish weren’t there. Disability hate crime brings both these things together! As a result I really do think that disability hate crime should be a special offense under the group selection model, and it should be vigorously prosecuted. Only then will we bring the erasers of people with disabilities out of the shadows.

Can insurance change the world?

ndisbanner

So the  National Disability Insurance Scheme (NDIS) national roll-out has commenced and there has been a lot of noise around it, at least in the disability community.  At the moment this noise is a rather cacophonous mix of the hallelujah chorus and a banshee dirge. demon-angelThere are repeated refrains like “person-centred care,” and lots of feel-good stories in the media, but an understandable fear and trepidation from service providers and users alike. The fear was not helped by a recent IT crash and claims of payments not coming through.

Such a confusing mix of complex messages probably deterred other concerned members of the community from considering the issues and perhaps explains why the attention paid to “the biggest reform since medicare”  in this past election campaign was anything but proportional to its likely impact on our society.  Although that could also be explained by the fact that its being rolled out quite slowly.  There have been trial sites since 2012, and it still won’t be anywhere near me till at least 2017.

This post is designed to provide an explanation that might help bring the NDIS concept into focus for people who aren’t familiar with it, and touch upon a few points about it I think need exploring. I won’t explore them in this post, however. I am very conscious of my tendency to write posts that are too long!

Using the INSURANCE concept to explain the NDIS, its aims, its potential and its problems.

So what I haven’t often seen in explanations of the NDIS is a focus on the word INSURANCE, but I think it’s a helpful way to understand what is happening.

The Car Crash and the House Fire:

Picture%20560-thumb-300x168-20269.pngLet’s say I had really really good car insurance. Some insurance companies offer discounts for safer cars, and some even often free or discounted preventative driving courses. If my car was smashed up, they would pay for it to be fixed, and I would have a choice among dealers whom they approved. Then while it was off the street, they would provide me with a hire car.

Or lets say I had home insurance against fire, and a fire went through my kitchen. My insurance company wouldn’t send me out a pack of standardised new utensils and appliances they had manufactured at the lowest possible cost in their own Department of Kitchen Utensils. They would fimages1CNGM5UV.jpgund me to buy what I needed to get my kitchen fitted out the way I wanted it again (within reason). They would also probably insist I get my smoke alarms up to date.

But what if I’d been a bad girl and not paid my premiums?

140030981Well I might be able to find a nice tradie to do my car and kitchen repairs cheap. I’d be stuck walking 20 minutes to a crowded train if I wanted to go places while they were working on my car, and perhaps indefinitely if I couldn’t afford to get it fixed.  I might be able to get some family and friends to chip in with some of their old kitchen stuff  and St Vincent De Paul or the Salvos would probably give me kitchen appliances from some stash they had. There is no way it would be about setting my kitchen up to be what I wanted. Nobody’s going to replace my bright pink hello kitty sandwich press, and I’d be considered ungrateful for asking for it. I’d get the bare basics that people could spare, or that are normally handed out to people like me by special departments set up for that purpose. If I wanted something more or different, I’d have to pay for it myself. I’d be sure to be substantially out of pocket, or to go without.

The Situation of People with Disabilities:

beggars.pngThe situation for many people with disabilities wanting to achieve their goals in life now is very much like the situation of the person without insurance. Government and charities offer some standardised services and therapeutic treatments provided by specialised departments. Family, friends and generous professionals sometimes lend a helping hand to fill in the gaps. But the person with a disability has little control, and  it is  almost never tailored enough, or enough full stop, to enable the person with a disability to live the life they want. Just like if  I wanted to avoid being stuck with public transport after  a car accident, or get my kitchen back the way I wanted it after a fire, I’d have to cough up enormous amounts of money I didn’t have, or go without.

The 2011 Productivity Commission report  which recommended the NDIS put it this way:

“The current disability support system is underfunded, unfair, fragmented, and inefficient, and gives people with a disability little choice and no certainty of access to appropriate supports.”

The difference is that having a hello kitty sandwich press or a hire car is a luxury I would lose through my own fault. Having the same ability to live one’s life and control it as a person without a disability is a human right people with disabilities are losing through the fault of society.

So what is the NDIS Supposed to do?

CMI_WAFL2The National Disability Insurance Act and the National Disability Insurance Rules allow people with disabilities to submit their life goals, and the ways they want or need to participate in everyday life, the community and employment. This might be to move out of their parents home, or to play in their local community sports team. This is a bit like telling the insurance company what my damages were or what I want fixed and replaced. They can also discuss what they need to prevent them needing more support from the NDIS in the future, like early intervention for autism. This is a bit like a safer car or smoke alarms.

cyborg_handshakeThen the person with a disability works with an NDIS “planner” to work out what things are  “reasonable and necessary” to help the person with a disability achieve those goals. That is like getting an assessment or quote or valuation for your insurance company, or being given a hire car which is necessary for you to get around the way you want while your car is being fixed.  Then the person with a disability can go out and pick how and who provides the supports from approved providers, just like I could go out and get my car fixed at an approved dealer.

Sam-with-mower.jpgHere is a simple example cited by former Disability Discrimination Commisioner,  Graeme Innes, in this excellent and spirited positive piece on the NDIS’ aims and significance. (I strongly recommend a read of this as probably the best among the mainstream media articles.) A farmer had high support needs after an accident that left him living in an institution away from his wife and kids. The goals for him were pretty clear, but there was nothing available. Then with the NDIS “He re-graded his drive so his house became accessible for him in a wheelchair. He upgraded his generator to guarantee the 24-hour emergency power he needed. And he chose people from local farming families to assist him in and out of bed each day.”

Sounds great right???

So what’s the problem???

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ell this is why I like the comparison to insurance.  For the person without a disability, I think this should help them  empathise and make the problems fairly easy to see. Know anyone who has ever had to get government funding for something or tried to operate on government funding? Know anyone who has ever had to have those unp{839E2F97-AFD3-4985-81E3-773C8B92C323}Img400.jpgleasant “negotiations” with their insurance company just so they could get their  house live-able again or their car drive-able again?  Does anyone doubt that there is a whole bunch of stress, red tape, confusion, inefficiency, and the struggle of the individual against the system?  This whole thing has the potential to become Yes Minister  and the Pink Batts scandal meets the Man Who Sued God.

red-tape2.jpgThe thing is that Yes Minister and the Pink Batts scandal both involved red tape and bureaucratic bungles in a system that had evolved over 500 years, dealing with issues where it has experience, and catering to persons, at least a significant proportion of whom, are not discriminated against minorities. Here we are trying to engineer a major social innovation. Just as with white governments trying to correct the second-class citizenship of indigenous people, we can expect mistakes, confusion, public backlash and controversy as ableist governments bring people with disabilities out of their long time in the shadows.  I have to say as well, the vagueness of the law on this issue, and the discretion it gives will only make matters much worse. See the autism expense issue, and the sex worker suggestions for two examples of surprises and controversies (no opinion of mine implied).


Similarly, the Man who Sued God is about the little guy trying to get what he needs out of his insurance InsuranceBroker-Vs-InsuranceAgent-Confusion.jpgcompany when the little guy happens to be a highly articulate mature white man with legal training. Not so for many clients of the NDIS. If their disability has no effect on their capacity to advocate for themselves, understand complex concepts, conduct research, communicate, organise and plan, or handle stress, then their maturity, education or culture might.   “Supported decision-making” not “substituted decisionmaking” was the catch-cry whilst the NDIS was being developed, but there isn’t abusinessman-with-a-magnifying-glass.jpg lot of support for decision-making at this stage, and many people are opting to having the National Disability Insurance Agency manage their plans for them. But do you really want an able-bodied bureaucrat or an insurance executive deciding what is “reasonable and necessary” for you to live your life? Arrrgh stressful!!!

Finally, as the Pink Batts Scandal and the Man who Sued God both showed that the answer to government bureaucracy is not to outsource the safety of the vulnerable to profit-driven big business. Yet a major part of the NDIS model is the increased role of the private sector. The NSW government, for example, is privatising its Department of Ageing, Disability and Homecare, much to the chagrin of many, as part of its agreement to the NDIS. Private business involvement supposedly reduces the degree of red tape, but also the degree of protection. There isn’t much red tape when a second hand dealer sells you a new car, but good luck if you think he’s not going to try to rip you off!

So what?

Well this blog post is long enough already so the various issues have to  be explored another day. The NDIS has great potential for good and for evil, so perhaps the hallelujah and mourning are both warranted. I personally think that this social innovation needs certain broader social innovations if it is to work. In particular, better regulation of the private sector when it performs public role, and development of the concept of supported decision-making. But that is for another day.

In keeping with the information hub aims of this blog, I will put a few links for those interested further:  I will add to the resources page in time as well.

www.advokit.org.au  This website is very easy to navigate, . As a lawyer, I love it, and I wish that there were more websites like it for things like the Australian Consumer Law, or Discrimiantion Acts. However,  it is not suitable for persons who might have difficulty with reading or abstract comprehension, .

https://theconversation.com/au/topics/understanding-the-ndis : This series is definitely weighted towards the negative, and a little academic in places, but all of the articles read together do provide a really interesting overview of and introduction to the laudable aims of and foreseeable problems with the NDIS.

http://www.mychoicematters.org.au/resources/ndis/national-disability-insurance-scheme. This is one of the sites set up to try and help fill the desperate need for support in learning to navigate the NDIS. What is particularly attractive, is that its resources take account of the great diversity among potential NDIS users, with resources in a range of languages, including Auslan, indigenous resources, and, particularly impressively, easy read versions of every fact sheet.

 

Disability friendly voting

So the Australian federal election is going to be held on 2 July 2016. Surprise surprise…disability issues haven’t featured. This is despite their effect on 20% of the population and the fact that the NDIS, for example, is one of the biggest reforms in Australia since medicare.  I’ve done a LITTLE research to help those of us who make disabilities a priority to vote:

First things first. Here is the AEC information about accessible voting so we can all have a say.

Secondly, I am a bit of a fan of those voting quiz sites, where you answer some questions about your views and they plot you on a political spectrum. This year they only take about five minutes. There are two available this year: the abc’s “votecompass” (I recommend using Chrome as your browser), and the Sydney Morning Herald’s “Your vote”  You can complain these sites are biased, and they don’t ask all the questions that matter to you, and they are simplistic. All these things are probably true, but so is voting based on your gut feeling or one or two news stories that stuck in your mind. Here is where they tell you where each of the parties stands on questions I thought were disability related. Click on them to blow them up (I had to answer the questions to get to this page, but I didn’t necessarily give the answers reflecting my actual opinion).

Next, the  Australian Cross-Disability Alliance has launched their “Election Platform” which is essentially a list of disability-friendly ideas by which we can measure the parties at the upcoming election. I quite like this first link because it is clear, short and has a list of questions for your MP at the end of it. However, here is where you can download the election platform in full in your preferred format. The policy platform suggests thirteen policy areas that people interested in disability rights should prioritise. Some of it is a bit vague and broad.

Also, each of the major parties has made some statements about their disability-related policies.

  • The Coalition site is somewhat difficult to navigate. However, I found this “plan for disabilities.” hiding out. This appears to be the press release for the plan, but it is now very difficult to track down.
  • The Greens have a dedicated disabilities page here. However, it is really a philosophy statement, not a policy one. You are better off going to this page and searching for disabilities in the election platform.
  • In terms of researching policy, I found the ALP the easiest. If you go to this page. You can either look at the menu across the top and click on “positive policies” and it will give you a list of policy areas which will link to lists of labour promises, or you can simply scroll down the list of 100 policies, or you can go to the right hand side and type in “disability”

Unfortunately, there are very few statements by the major parties addressing the matters in the Cross-Disability Alliance platform. However, hopefully this will give you place to start in your voting. Lets vote on disability lines guys. Twenty per cent of the population…imagine what would happen if we did.

 

The “But” Disease

Like most forms of discrimination, disability discrimination is plagued by the “but” disease. It doesn’t come in the form of “I’m not a ableist but…” yet because there is simply not enough stigma attached to being an ableist. it comes in forms like this: (All adapted from real conversations I’ve been in.)

“i know you care about disabilities BUT  you need to see the other point of view. I have a small business and these politicians in their ivory towers want me to fork out thousands of dollars to make it accessible. Its not fair.”

Of course people with epilepsy can do all sorts of jobs, BUT  I’m sure the company I work for wouldn’t hire anyone who blacked out in a job interview. It just not possible.” 

My personal favourites:

“I am training to be a special needs teacher…BUT this group holiday is my vacation so I don’t want to have to deal with your problems. Just avoid me. ” (Yes I was on my knees bawling after that one. Nice to know my humanity stops when she’s on holiday.)

I know you had to go to hospital in the middle of the night BUT that was no excuse for waking me up. You shouldn’t expect other people to deal with your health issues.”

What is behind this?

Ok, so there is a line. Someone who is totally blind might struggle to be a race car driver. (see this Chaser prank for a humorous take on the line

) Some charity feeding starving children on a shoestring from a heritage building might not be able to spend $50,000 replacing a 100 year old staircase . Sadly, almost all the “buts” occur long before that line.

I am not that kind of person so I can’t tell you exactly how these people think, but I think that there are a few things going on here:

  • There is a failure to recognise that including people with disabilities is not an optional act of extra merit on the part of the good person. It is a fundamental DUTY  and failure in that duty is a fundamental moral WRONG. When a person decides to discriminate against a person with a disability they have judged the benefits of a WRONG behaviour to be worth it. Now sure, life is like that.  We would all kill a madman about to execute our family.  We would all lie to protect Jews from the Nazis.   BUT lets get some perspective.
    • The above thinking is “charity model” and “medical model” of disability which are still fundamentally embebedded in our culture.The charity model is about 40 years out of date. Most educated people now reject the “charity model.” and the “medical model .Those who reject it tend to favour the “social model” This is the  idea that society creates the problems facing people with disability by not being flexible enough. There is a world of difference in moral culpability between causing a problem and failing to help out those affected. Last time I checked, it was society that built steps not people with disabilities. But hey…I could be wrong. Aliens built the pyramids after all.
    • Regardless of model, the way I was raised was that if there is a problem that affects some people more than others through no fault of the others’ fault, it is a duty, not a praiseworthy act of generosity, to spread the cost. That’s why the government paid for sound-proof windows at my house. I live under the flight path, so I get worse noise, so we share the cost. Disability activist, Tom Shakespeare, has made a similar argument.
    • We are a  part of humanity that isn’t going away (after all, we have made up 10% or more of the population for most of history). If we are a part of humanity, then how can our inclusion and respect be some optional extra in life?
  • The problem is systemic. Our society is not set up to spread the cost of disability, or be flexible to human difference. That means individuals who do the right thing will sometimes have to bear more of the burden than they should. Last time I checked so did the Freedom Riders and the Suffragettes. This is not right, but it is the cost of fixing a wrong. Also, there are ways to tackle the systemic problem.
  • People don’t consider that diversity and non-discrimination has positives. Firstly, arguably, it is a good thing and has an inherent value in itself. But it also has side benefits.  As a business, it means more customers. As an institution, such as a school or court room, it means a more diverse and interesting experience, and a true representation of humanity. Rather than just thinking about the benefits of WRONG behaviour and the costs of RIGHT behaviour, people should think about the benefits of the right behaviour and the costs of the wrong.
  • Fear and laziness makes people rush to the conclusion that there is a problem, rather than actively look for solutions. Sometimes, when people learn about me, I feel their minds ticking over actively thinking about why I might be a problem. Newsflash. If you did that to a “normal” person you would find problems with them too. You are just used to those problems!
    • There was a great case I did in discrimination law (Vickers v NSW Ambulance Service about a nurse with diabetes who wanted to join the ambulance. They wouldn’t let him because they were afraid he would have a hypo behind the wheel (despite the fact he hadn’t had one during 14 hour surgeries). The judge went through all sorts of solutions and possibilities with both sides and then finally came to the conclusion that, really, the ambulance service couldn’t be that concerned about people passing out behind the wheel. None of their “normal” drivers had to have regular medical check ups. If the “normies” had a heart attack, dozed off or had undiagnosed epilepsy like yours truly, well then that was ok because that was a “normal” risk.  In reality the diabetic man was safer.(For lawyers, see paragraph 53)
    • Or think about the West Wing. There was a massive furore because the President had MS, which can eventually affect your executive functions. Too bad he was a great President. Nobody cared that our Prime Minister here in Australia got drunk and declared a national public holiday because we won a boat race. I guess the risk of people getting drunk is a normal risk.
    • THe president

 

  • Nobody is creative. Universal Design has brought to us the idea that often we can accommodate disabilities quite easily just by thinking laterally. So once, I had a friend who worked on a reception desk whine to me about how they had built it too low for the able-bodied staff and it hurt their backs. Apparently “someone had complained that it would be too hard for a person with a disability in a wheelchair if it were lower. BUT they didn’t think about our backs.” Well it took me 30 seconds to think of a solution. Why not build it at two heights? Looks like I’m not the only one who thought of that. o4102-0007867

So What Does this Mean?

For Everyday Life and Grassroots Advocacy

  • We need to work on tackling the systemic problem to reduce the cost to people who do the right thing. This can mean:
    • Ethical shopping and review-writing. Do we make an effort to patronise accessible shops and businesses? To boycott movies and TV shows that promote ableist values? Do we take into account accessibility   when rating businesses, and movies online and discussing it with our friends?  We would certainly have something to say about a shop with a sign out the front saying “No women and black people” but do we consider whether it has a lift? We might also consider whether a business has a disability action plan registered by looking at this site, before we choose one.
    • Taking advantage of the systemic support available. Ok it’s not great but it does exist. For example, there is funding and training to help employers adjust for people with disabilities. If NDIS is in our area, we can explore what support we might be able to get funded for through that.Before a person discriminates, they should really consider their own options for systemic support. But, having a bit of information on hand can also help us shoot down the “ivory tower” argument.
  • Here is a little checklist that   we can use to critique and respond to the “but” disease, and decide whether the line has really been reached
    • Has the discriminator recognised that by their actions they are participating in a fundamental moral wrong and the seriousness of that wrong? Do they take it as seriously as they would take the equivalent behaviour on the basis of race or gender? Do they recognise that people with disability are a real part of humanity that aren’t going to go away?
    • Does the discriminator recognise what is available to correct the systemic wrong that would leave them disadvantaged for doing the right thing? Does the discriminator recognise that  that the costs are even greater for the person with the disability through no fault of that person?
    • What benefits and values of non-discrimination have  been considered and put forward? Has the inherent value of non-discrimination been given enough weight?
    • Are problems really as serious as they are made out to be? Is it possible that similar problems, or problems of similar gravity could occur without a disability? How would they be handled?
    • Is the problem really just that we are stuck in a box that pits the needs of people with disabilities against those with disabilities unnecessarily? Is there an outside the box solution?

For Lawyers, Professionals and Academics:

  • I think the checklist above could be quite helpful in thinking through discrimination questions and problems.
  • It is worth tackling the “but” disease by working on more sustainable underlying assumptions.
    • There is no real excuse for any educated person to follow the charity or medical model today. If we can find evidence of it in someone’s argument, we should point them out and decry them.
    • However, we should keep our own alternative model up to date.
      • There are some valuable critiques of the social model out there. The issue is really a lot more complex. We can’t tackle ignorance unless we come at it with multiple  weapons.
      • The emphasis on being “subjects” and “holders of rights” in the United Nations literature goes beyond a simple social model to something a little more pro-active to a diverse concept of human rights. Once again, we need to remember that international law sheds light on how Australian law is interpreted. It may be especially valuable in dealing with all the myriad regulations that flood the world of people with disabilities.
      • I would say the idea of people with disabilities as subjects and holders of rights is particularly relevant to the breakthroughs on procedural fairness that have been made. In this quote from an AAT case on wage justice, we see how the fundamental right enshrined in Australia’s constitution, to be heard on matters concerning oneself, was not considered displaced by “buts” of practicality.
        • “… it is not proper for such considerations of practicability to effectively displace the responsibility of the Commission to give those individuals an opportunity to be heard on the application at hand,”
      • I would like to see the concept of universal design fleshed out further.  At the moment it is still relegated largely to the built environment. Jeremy Bickenbach has written an interesting piece exploring its more general applications, and Jennifer Jolly-Ryan has discussed its applications in the law classroom.

 

 

 

Are Inquiries Read by Anyone?

Another government report has been released finding abuse in the disability sector. This is really serious stuff folks. Taking away people’s wheelchairs when they need it is like tying someone without a wheelchair to the bed. Victorian Disability groups have called for a royal commission. However, here is the problem: there have been a plethora of inquiries in recent years revealing the most appalling things, and I mean tonnes and tonnes of

Here are some: They might seem long and technical, but they often have executive summaries that are worth a read:

Australian Law Reform Commission: Equality, Capacity and Disability in Commonwealth Laws– a complex and very long piece couched in non-committal language, but which makes 55 recommendations for reform, having found a yawning chasm of room for improvement in our fulfilment of our human rights obligations. My favourite line from this one is this matter-of-fact statement  “Generally, if a person with a legal disability attempts to make a contract, that contract can be declared ineffective.”

Human Rights Commission: Equal Before the Law- Towards Disability Justice Strategies: This one does not mince words.  Here is a great quote. See the end of this blog for a better one though. ” As a victim of domestic violence I encountered police who just did not see me as worthy of their time. When I became homeless, they thought this was normal as I was a person with a disability” 

The Victorian Law Reform Commission’s report on Guardianship: Of particular concern here is the section on restrictive practices. It essentially found that there was no legal regulation of  what was really a form of imprisonment, that is, keeping people with disabilities in homes and hospitals against their will without any regulation. It admitted there are a whole bunch of people with disabilities “in jail” without any law so to speak.

The Civil Society Shadow Report to the United Nations on our human rights obligations: This goes through every article of the United Nations Convention on the Rights of Persons with Disabilities and shows how we are failing as a nation.

.So why hasn’t anything been done?? Well you all know the proverb about those who will not see.

So what does that mean for us?

We shouldn’t give up. Inquiries such as the inquiry into black deaths in custody and the stolen generation have radically changed our society.  A royal commission tends to have a bit more clout than an ordinary report, so calls for one are worth adding our voice to.

We can use social media and our informal networks to get the word out about these reports. Inquiries have a certain ring of authority to them, and so we should try to spread the word when one puts out a report. At law school, where the issues facing 1 in 5 Australians in dealing with the law are so *cough* well-known *cough* (not), I was constantly making jaws drop by saying, “You know the AHRC has found that 9 out of 10 women with intellectual disability will be raped.” (Yes that was what their report said)

Social media is also a very useful alternative way to reach out with your story or that of someone close to you. There are several “wall of shame” groups of Facebook, and  petition sites like change.org if you want to take it a bit further. Videos of serious discrimination and inequality have gone viral on multiple occasions.