Rising to meet the challenges of understanding ourselves as Autistics in a non-autistic world.

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A major challenge that is presented  to many Autists in today’s society is choosing just where it is they wish to stand within the Autism spectrum.

I can proudly claim my right to be an Aspie and not see this as a disability, or  feel the need to change at all to fit into a non-aspergic world.

I can meet with others over the Internet, find a job where I don’t have to socialize with others, and indulge my favorite obsessions without messing anyone else’s life around.

At the other extreme, I can humbly acknowledge my crushing disability, and make extreme efforts to learn compensatory strategies that will help me become as “normal” as possible to fit in with everyone else.

Neither of these extremes suit me, and I’ve taken a middle position on the spectrum, which makes sense considering that I have a spectrum disorder!

I’m not sure whether or not having  Autism is something that I should bother to analyze rationally by seeking a legally framed story of cause and effect to explain it away, or whether it’s just one of the unavoidable hammer-blows of fate?

Or even, perhaps, as some see it, a challenge from the gods, designed to shift me into a different mode of functioning?

I guess in a lot of ways, the difficulty of rising to meet the challenges of understanding ourselves, is no different for us auties and Aspies than it is for the “normal ones” .

The normals still have the luxury (or obstacle?) of being able to hold on to their comforting views of the world, of themselves, of the purpose of life: whereas we are foreigners in a strange world in which we are reminded a hundred times a day that we are visitors to this strange place.

But, could that become a strength?

We may be able to think outside the square – let’s face it, we have little choice, since the square may now be closed to us. My need for literal and straight communication meant I had to be skeptical about anything anyone said to me, go back to first principles and seek truth with logic – an unpopular quest in a social milieu where the admission ticket consists of already knowing and accepting the consensus view, however illogical or untruthful it may be.

Can we, whom the gods have chosen to bless with this challenge, make any positive sense of being on the autism spectrum, and painfully carve out a new direction? Was it a divine intervention to force us to learn a very different way of being to the way of most on this planet? Is it all karma for actions we perpetrated in a past life? Can we learn from our dire experiences some new compassion for the suffering many?


I haven’t yet completed the long process of making sense of it all, and it will probably take me some years.

But I have found that it helps to keep myself open to the possibility that I needed to learn something, probably many things, from the many unpleasant things that happened over the years – bullying, taunts at school, abusive father, social alienation, constant sacking from jobs to name a few. I hope to gain insights that will make me a better person in a spiritual sense, perhaps that the direction I had been headed in during my recent incarnations was in need of change, and that I needed to take on board some painful humility about the common suffering of humanity which will help me become a more giving, forgiving and compassionate person in the end.

Disability Care Australia: Giving with one hand – Taking with the other. A double whammy for both individuals with disabilities and their full time carers. Mobility Allowance Loss.

lost in the noise

Recently my son qualified for support from the eagerly anticipated, government initiative now called  Disability Care Australia (formerly known as the National Disability Insurance Scheme  (NDIS) .

For those who aren’t familiar with it, this scheme is meant to provide those with disabilities and their families the freedom and power to choose their own person centred support networks via the ability to nominate which service providers they would like to access.

However with Disability Care Australia, as with most things, the devil is definitely to be found lurking around in the details.

One of those devilish details being the fact that as soon as anyone who currently receives a mobility allowance participates in the writing up and submission of any form of support plan, through Disability Care Australia (DCA), they will automatically lose their mobility allowance.

That’s right.

As soon as you agree to the submission of your support plan with Disability Care Australia, you will lose your mobility allowance.

This means that far more likely than not, people will not even have had time to implement any said new transportation arrangements, before their mobility payments are cut off.

What’s more, alternative transportation arrangements may not even form part of the initial support plan put forward by Disability Care Australia, as many of their case workers aren’t even aware of either the loss of the mobility allowance or how greatly the loss of this payment will impact on individuals with disabilities and their families.

With the price of petrol sky rocketing, the mobility allowance for those who must rely on private family based transport in order to get to and from the places they need to go, has become an absolute must.

Now in my son’s case, he receives a mobility allowance specifically because he cannot catch a bus or any other form of public transport safely.

His mobility allowance is therefore meant to help cover the cost of travelling to and from college and other places in privately owned vehicles (the family car) that are both safe for him and come complete with a carer to help him transition from the car to his classroom .

This is the point at which the loss of the mobility allowance begins to become a double whammy for those of us who are full-time carer’s for our sons and daughters, because in essence, our loved one’s mobility allowance is not just a must have payment for them, even though they are the ones who qualify for it, but it’s also a must have payment that enables us as carers to adequately fulfil our roles by providing whatever mode of private transport is required for our loved ones.

So the cutting off of the mobility allowance not only impacts on the individual with the disability but also on their full-time carers who are going to be expected to continue to provide private transport without the capacity for their loved ones to offer any financial assistance towards the cost of providing that transport.

Under Disability Care Australia, carers can apply for a rebate that reimburses them 76 cents per kilometre travelled when providing said transport, however this requires the keeping of an accurate log book over a period of time.

Now I don’t know about you, but the last thing I want or have time to do, once I’ve settled my son into the car of a morning, is to fill out a log book entry.

Besides which, the reimbursement of 76 cents per kilometre does not take into account the fact that petrol consumption occurs while you’re stuck at traffic lights or caught up in traffic jams, as is so often the case around school drop off and pick up times.

So unless you are travelling great distances, it may not even be worth applying for the reimbursement.

For me, being a full-time carer means that life is often hectic enough as it is, especially around those typically busy times such as school drop off and pick up and I for one, do not need the government turning those already busy times, into some kind of documented and notarized business transaction.

Although I often jokingly refer to all of the running around I do for my son as being ‘Mum’s taxi service’, I am not in actual fact running a public service and I refuse to be expected to fill out forms as if I were doing so.

I just can’t help but shake my head in sad bewilderment at it all.

How can a support service that has been so keenly anticipated and premised on its politically promised ability to provide greater levels of independence and understanding towards the needs of individuals with disabilities and their families, make such a basic mistake in undervaluing the worth of the mobility allowance to all who currently receive it?

Shouldn’t the first rule of helping those with disabilities and their families be to make sure that you are not making them worse off?

Why Are Children with Disabilities Still Being Bullied and Marginalized within Education?

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“Many disabled children fail to reach their full potential because they continue to be marginalized in schools, health and social care, according to new research funded by the Economic and Social Research Council (ESRC).

“We found that disabled children often experience discrimination, exclusion and even violence,” say Professor Dan Goodley and Dr Katherine Runswick-Cole, who implemented the study at the Manchester Metropolitan University. “The biggest barriers they meet are the attitudes of other people and widespread forms of institutional discrimination.”

“Disabled children are seldom allowed to play and act like other children because of concerns about their ‘leaky and unruly’ bodies. But our study shows that many children who don’t fit the narrow definition of ‘normal’ have untapped reserves of potential and high aspirations which can be fulfilled when their families receive effective support. There are also many amazing families who should be celebrated for the way they fight for their children.” continues Professor Goodley.

The aim of the Does Every Child Matter, post Blair? project was to find out what life is like for disabled children and young people in the context of policy changes set in motion by the New Labour Government after 1997. The Aiming High for Disabled Children policy agenda was intended to enable disabled children to be ‘healthy’, ‘stay safe’, ‘enjoy and achieve’, ‘make a positive contribution’ and ‘achieve economic well-being’.

The findings, which are based on a series of interviews with disabled children and their families, reveal numerous barriers to these goals, for example:

  • Disabled children are often perceived by educational and care professionals as “lacking” and as failing to fit in with the image of ‘normal’;
  • Families who do not match the norm are frequently excluded from friendships, education and work;
  • The support system is complicated and there are gaps in provision, particularly during the transition to adulthood;
  • Physical access and transport barriers to sport and leisure activities result in segregation, while participation in art and creative activities is limited;
  • Widespread discriminatory attitudes threaten to create a culture of bullying;
  • Families of children with life-limiting/threatening impairments often experience isolation and poverty

The researchers call for a change of attitude towards disability so that diversity is not only valued, but promoted. “There is an ‘epidemic’ of labelling children as disabled,” Professor Goodley and Dr Runswick-Cole warn. “Parents are repeatedly under pressure to talk about what their children can’t do in order to access services and support, but sometimes the label can obscure the individual. Families should be asked what support their child requires, not what is the ‘matter’ with him or her.”

Their report recommends that policy should prioritize enabling disabled children to break down barriers by supporting their participation in education, the arts, leisure and their communities and by meeting their communication requirements. “We need to re-think the culture of individualism and performance which pushes disabled children out” continue the researchers. “Pressures on schools are getting worse. We found a case where parents of non-disabled children petitioned to exclude a disabled child. What does this say about the meaning of education and community?”

The study found that bullying is often accepted as inevitable when disabled children are perceived as vulnerable. There were several layers of violence, from manhandling in school to psychological bullying, which often goes unnoticed by adults. Some children do however stand up to bullies and refuse to be limited by labels that are imposed upon them.

One young person insisted on attending Brownies meetings alone, despite health and safety rules that required her mother to accompany her. “Kids seem to enjoy challenging people’s expectations about their limitations,” the researchers commented.”

Originally sourced from http://www.esrc.ac.uk/news-and-events/press-releases/18605/disabled-children-do-matter.aspx

 

Imagine What Your World Would Feel Like…….

tumblr crying girlImagine,

What your world,

Would feel like,

If you could turn,

All of the pain,

Of invalidation,

Into the celebration,

Street angel

Of  living,

An accepted,

And powerful,

Female,

Life.

Autism and Reverse Discrimination – When Special Needs Equates to A Lack Of Consideration

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I went to collect my almost 17-year-old son from College today, only to find myself being dragged into an impromptu meeting with the head supervisor of his Special Needs Unit and the parent of another 19-year-old student.

So what crime had my son and the other student committed that had the Special Needs Unit in such a tizz?

Well, my son and his friend, had decided that they‘d had enough of being surrounded by people all day, so they’d cut their last class and were found sitting, talking quietly together outside the SNU on a bench.

Oh my god!!!!!!!!!!

What an apparently, absolutely awful and completely inappropriate thing for two young adults with Autism to choose to do!!!!!!!!

How dare they even try and act like “normal” young adults who are capable of making their own decisions regarding their state of mind and choose to take up a small piece of quiet time at the end of the day for themselves, instead of entering once again into a noisy class room.

For making this choice, both my son and his friend were not only hauled over the coals, but both had their parents snapped up in the College car park at pick up time and dragged into an overly serious meeting regarding the “consequences” of said actions”.

I’m sorry but  personally I felt embarrassed to be there, in that meeting, with those people, who were all condemning my son and his friend, for  making the very choices and taking the very actions that they undoubtedly see every other non-autistic student at that College  being able to make for themselves every day, without so much as receiving a second glance by their teachers, let alone suffering the indignity of a reprimand from their head supervisor in front of their parents.

My son chose to go to a main stream College for a reason and that reason did not include him being treated as if he should hold fewer personal rights than any of the other non-autistic students at that campus.

He chose to go to that College because he wanted to continue his education in a ‘normal’ environment and be viewed as a ‘normal’ student.

Yes he has Autism and so does his friend, but that shouldn’t automatically mean that they both forfeit the right to act autonomously occasionally, should it?

Neither left the College Campus.

Neither committed any acts of vandalism nor even tried to do anything particularly wrong.

Neither were being loud or in any way disrupting the learning experiences of  other students.

Neither were being inappropriate with each other in any way.

All they were doing was talking, quietly, on a bench that could be easily seen right outside the window of the SNU.

In comparison to some of the actions of the  ‘normal’  students on that campus  whom I’ve seen walking around swearing loudly, pushing into each other and even in one extreme case punching holes in the wall, my son and his friend were thoroughly tame, well-mannered and despite being without ‘teacher supervision’, were well-behaved.

Yet both my son and his friend found themselves being spoken too as if they were naughty 6 year olds instead of being 17 and 19 years old respectively.

Never once, despite all of the things I’ve seen on that campus, have I ever seen any other students there, being spoken too as if they were an errant child instead of a young adult, by the staff .

So I sat in that meeting, much like my son, cringing from the injustice of it all and realizing silently that speaking up, in this environment,  would simply never be an option at all.

I watched my son grow  paler and paler as the head of the Special Needs Unit grumbled on  and on at him and wondered why it was that this supposedly educated and well seasoned disability support worker could not see the enormous and incredibly negative impact that his words were having on my son.

My own  sense of hopeless sadness growing as the effects of the blows that each negative word, spoken to  my son, had on him.

Taking from him the strength of a head held high and reshaping  his body with deliberately hunched shoulders and a bowed head that averted his gaze from everyone in the room and instead remained stoically focused on burning holes into the floor, with his sad, angry eyes.

When the grumbling had finally come to an end I asked my son if he had anything that he’d like to say but his mouth had formed itself into a thin hard-line.

His words were once again locked inside of him.

He was going into shut down mode and all he could do was glare at the floor and shake his head.

Now, instead of looking forward to going to College tomorrow, as he normally would,  my son is terrified that he might once again make the mistake of thinking and acting for himself and perhaps risk being expelled because of it.

He is equally as terrified that when he goes to College tomorrow that his friend may no longer want to remain friends with him.

It seems the tirade of today has done nothing but reinforce the sense that there is some kind of invisible separation between the rights of my son and the rights of other students at the College.

The reactions of the staff  have done nothing but induce fear within my son.

So accordingly, I can’t help but wonder just where the equality is to be found in any of their dramatic over reactions?

I agree that ideally, my son and his friend should not have ditched their last class, but, what College student isn’t equally as guilty of occasionally doing the same thing, only without all the encumbrances of the embarrassment and fear, that my son has now experienced?

Doesn’t anyone there understand how amazing it is for my son to have a friend that he feels he can genuinely share his time with?

Why does it always seem, that the very measures that are put in place to help my son, too often end up hindering him?

That instead of giving  him a sense of empowerment, these measures end up robbing him of the right to direct his own personhood?

Sterilization whose decision is it? The fine line that parents of teenagers and young adults with severe cognitive disabilities must walk between honoring their childs human rights or committing ‘acts of violence’.

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A  new Senate inquiry into the sterilization of people with disabilities is reigniting a decades old debate within Australia.

One of the key questions this inquiry will be asking is whether or not anybody has the right to choose sterilization as a valid option for another person?

Especially if that other person doesn’t have the capacity to speak for themselves.

In one of my previous posts http://seventhvoice.wordpress.com/2012/05/21/the-techniques-of-bias/ I explored the ways in which the very distinct form of language used to frame and dictate the parameters considered valid within the sterilization debate, act as  gate keepers of thought, preventing even the most liberal or fair-minded of us from being able to make any clear distinctions as to just whom these laws should and should not apply too and how.

To which I stated:

Most of us agree that disability or not, there are certain human rights that are, or at the very least should be, considered mandatory for all human beings.” The Techniques of Bias.

I still stand by this statement however,  I would seek to question just when it is that the human rights that we consider to be indelible and at all times in the best interests of those involved, cross the line into becoming inhumane rights?

Parents of teenagers and young adults with severe cognitive disabilities, particularly those with girls/young women are facing what can only be described as a double-edged sword that is continually slicing away at them within this debate.

The example I gave in my previous post in ‘the-’techniques-of-bias, regarding a loving family who had requested sterilization for their severely cognitively disabled daughter, and had been knocked back three times by the Guardianship Board, find themselves once again in the firing line within this debate.

They are being held up and accused once again of trying to steal their daughters human rights away from her by requesting that she be sterilized.

Yet no matter how cold heartedly these parents are being portrayed by those who wish to abolish the ability of parents to request sterilization on behalf of their severely cognitively disabled children , I know that the idea of sterilizing their daughter for sterilization’s sake, is absolutely the last thing that these parents wish to engage in.

They don’t want to have to be a part of this fight.

They just want to do what is right for their daughter.

Far from seeking to remove their daughter’s human rights by applying to have her sterilized, they perceive themselves as trying to add to their daughters human rights by giving her the best opportunity of improving the quality of her every day life.

As parents, they want nothing but the best quality of life for their severely disabled, 6 foot tall and incredibly physically mobile 20-year-old daughter, who has a disintegrative developmental disorder similar to that of  severe autism.

Although 20 years of age, her cognitive acuity hovers somewhere around that of  a 2-year-old.

She is non-verbal and requires 24 hour constant care.

For this family, achieving the best quality of life for their daughter, means alleviating the stress and the trauma that she experiences every time she menstruates.

Fortunately, most of  us are not faced with having to help a 2-year-old in a twenty year old’s body who becomes so highly distressed during her periods that she regularly engages in acts of self harm whenever she menstruates.

For these parents however, such acts include their daughter trying to eat her own sanitary pads, smearing her menstrual blood all over her body, face and home,throwing herself at walls, bashing her head repeatedly against the toilet bowl at the sight of her own menstrual blood, and becoming so highly agitated and hysterical that medication is required to calm her down.

Speaking out publicly about their situation they state that “as parents they have tried several less invasive options to try and prevent their daughter from menstruating including two different forms of contraceptive pills, implants,  and  a menstrual management program, all with “disastrous results”.

Her mother states that “the moodiness caused by the contraceptive pills we’d tried only further exacerbated our daughters anguish….. we’ve had broken furniture, scars from where she’s scratched and bitten us, and my other daughter had a whole clump of hair pulled out of her head”.

“No one should have to feel as angry as my daughter does and put up with having those side effects from medications. I just can’t imagine putting her through this for another 30 or 40 years.”

“To me, that’s cruel”.

“That’s inhumane”.

“There is just no dignity in any of this for our daughter. She doesn’t understand what’s happening to her and (having her period)   is stopping her from being able to enjoy those things in life that she would usually be able to enjoy.”

Both parents therefore viewed sterilization as their last and only hope of enabling their daughter to retain both her dignity and her quality of life and stated that being “knocked back by the Guardianship Board for this procedure has left their entire family traumatized.”

“Unless you have lived in this situation you don’t really understand it”.

“I just think it’s wrong that people can vilify you, criticize you and judge you,  when they don’t really know what it’s about unless they have walked in your shoes”.

“Any decisions we make about our daughter are about making her already incredibly difficult life easier for her. It’s not about us. It has never been about us”.

This mother’s bravery in once again speaking up and asking that her own daughters human rights be considered on an individual and a ‘what’s best for the person concerned’  approach, indicates that there must be room made within any legislation regarding this issue, that addresses the very complex and complicated issue of cognitive disabilities.

Especially considering that many within the disability community and activist groups view the sterilization of people with disabilities as “an act of  violence amounting to both torture and a form of eugenics designed to do nothing more than improve the human race” (Frohmander 2013).

When spoken about in these terms, sterilization becomes seen as “an abuse of a man or a woman’s fundamental human rights” (Frohmander 2013).

Given the terrifying history of sterilizing all people with any form of disability that has in the past, held sway, I can well understand why many in the disability community are pushing for a ban on the sterilization of any person with a disability within this latest Senate inquiry.

However, I do questions, especially given the situations of the parents I’ve outlined above, whether or not, in all cases, a parent requesting sterilization for the betterment of their child’s life, must always be seen as being equal to either “abuse” or “committing an act of violence” against their child?

As it stands in Australia right now, it is possible for a third-party, either a Guardianship and Administration board, or the Family Law Court, to legally uphold a parents request to have their teenager or young adult sterilized.

Given that there is a mountain of legality involved in making such a request the decision to press forward with any request of this kind is not one that is made  lightly by the  parents of teenagers or young adults with any form of disability, let alone a severe cognitive disability in which the body, for all intents and purposes is seen to “function normally”.

Yet this is no longer an issue that revolves solely around the rights of those with physical disabilities or mild intellectual disabilities, who can speak for themselves and whom I thoroughly agree must have every right to make their own decisions about each and every aspect of both their bodies and their lives, but it is also an issue that must enable those so endowed with making any final decisions on behalf of those with severe cognitive disabilities, the capacity to treat each request for sterilization, from a person centred, best outcomes approach,that encompasses a greater understanding and awareness of the needs, and therefore a broader understanding of what it is that encompasses the human rights of every  individual that comes before them, regardless of the form that individuals disability takes.

I’m yet to be convinced that we should be seeking to treat this very serious issue as if it were a one size fits all dilemma capable of being fixed by a one size fits all piece of blanket legislation?

What do you think?

Beautiful Women

If beauty,
Ever,
Only exists,
Within the eye,
Of the beholder,
Then I see you all,
As being,
Truly,
Strong,
Capable,
Beautiful,
Women.

Remember when the NDIS was the NDIS? A Carer’s Lament.

As the parent of a child with autism I don’t need a pat on the back for all that I do.

Nor do I need to be placated with the odd carers lunch.

I don’t need to go to workshops every week,

Or wear a gold name badge to tell me I’m important.

 I don’t need to be invited to meetings

To serve as the token parent of a child with a diffability

Just  to make you look good.

Chances are I’ll be far too busy looking after my own son ,

To attend your pretense of a meeting.

But then again,

If you really had any understanding of the true issues,

That carer’s face

Then you’d already know that

Wouldn’t you?

Or perhaps the fact that we are all to busy,

Filling our days with the things,

That need to be done,

Instead of discussing the ways,

In which you think they should be done,

Is exactly what you are counting on?

So you can continue to conjure up,

Your stealth legislation.

Either way I don’t need to be the only person in the room not being paid,

To sit through yet another round of your dead-end discussions,

That so skillfully fail to address every real issue,

When it comes to the idea of disability reform.

 So let me make this clearer for you,

 I don’t need to attend carer’s workshops,

I don’t need someone condescendingly telling me that I need to take care of myself,

Whilst  simultaneously denying me the right to have my ‘care’ valued at a rate,

That would be equivalent to a living wage,

 I don’t need any more bureaucratic solutions,

To what is in essence, a very human condition,

So please stop waving your over-designed justifications,

And compulsive needs,

For economic rationalisation at me.

Let me give you some economic rationalisation of my own,

Carer‘s save tax payers billions of dollars every year,

Given that cost benefit analysis,

Are you seriously going to try to tell me,

That this country can’t afford to pay carer’s,

Even so much as a sub-standard wage,

For all of the work that they do?

And while you’re mulling that one over ,

I have another list for you,

It’s called ‘The things that I need’.

I need you to pull your head out the sand,

To stand beside me,

Not above,

I need you to make a sincere commitment,

Toward fulfilling your obligations,

In securing the unfailing provisions,

Including all of the forms of assistance,

That my son may need,

To respectfully be,

Who is,

In the best,

Most humanly honorable way possible.

This means doing more than just standing by,

As policy makers turn what once was a hard-fought campaign for equality,

Into a maybe we should change the name of this pony,

And then lets pop in a few more vote winning extras,

Into the mix,

Like Work Cover Assistance,

This is meant to be the NDIS,

Not a free for all for anyone who might get injured at work.

So please,

Can you just try to remember how this reform all started out?

And the people whom it’s meant to represent.

 

So whats in a name you may well ask? Well everything if it denotes dependence instead of independence.

2012 Global Atheist Convention

 The National Disability Insurance Scheme (or the NDIS as it was formerly known) in Australia has quietly undergone a name change. It’s now to be referred to as Disability Care Australia. So what’s in a name, you may well ask? Well for one thing the use of the term ‘Disability Care’ goes against everything that proponents of NDIS once claimed they stood for.

Namely achieving greater levels of independence for those with disabilities in order to better enable them to choose their own service providers and decide for themselves which types of services were most appropriate for their needs.

The objective was to provide those with disabilities with greater independence so I’m not sure how the use of the term “care’  in this instance is being justified, as it implies the exact opposite of independence for many.

The term “care” is an extremely  loaded term within disability circles as the ABC’s  Stella Young   reports.

Disability Care: a bad name but a good direction?

“The NDIS will now be known as  Disability Care. It’s a terrible name, but at least we are now on the path to providing better services for Australians with disabilities, writes Stella Young.

In a week where legislation for the biggest social reform in generations passed through Parliament, there should have been great applause.

People with disabilities, along with many allies, have been fighting for the National Disability Insurance Scheme (NDIS) for a long time. Indeed, there is much cause for celebration.

So why does it seem there’s more face-palm than applause?

I’d hazard a guess it’s because of the dreadful name. I’ll forgive you if you haven’t heard it. After all, the announcement that the NDIS would now be known as Disability Care Australia was made very quietly by Minister for Disability Reform Jenny Macklin at an event celebrating National Playgroups Week.

Minister Macklin said “The name has been chosen based on consultations with people with disability, their families and carers, peak organisations and the general public.

“Disability Care Australia reflects the principles of the NDIS – that all Australians with significant or profound disability receive the care and support they need regardless of how they acquired that disability.”

Presumably, the re-branding of the NDIS as Disability Care is also an attempt to link the reform to Medicare; to cement the scheme in the minds of the public as existing, like other social services, for all Australians. Unfortunately, the term ‘care’ has a much more loaded history when it comes to disability.

Lesley Hall, head of the Australian Federation of Disability Organisations (AFDO) says that her organisation was one of those consulted and that AFDO strongly advised the Government against using the word ‘care’ in the name.

“The name of the NDIS should reflect what the scheme is trying to achieve – empowering people with disability to be equal with
all other Australians,” Ms Hall said.

“Using the word ‘care’ perpetuates the myth that people with disability are passive and in need of help. It is support people want – not charity, not welfare.”

Despite several attempts, I’ve been unable to find an individual or organisation who was a part of seemingly low-key government
consultation, and who likes the name. Indeed, the name was heavily criticised on a forum discussing the NDIS. This forum was later removed, but the comments still exist in Google’s cache.

We are no strangers to terrible names for things in the disability sector. Two years in a row the campaign for the NDIS, Every Australian Counts, has run so-called awareness-raising DisabiliTEA events. Yes, you read that correctly. Disability, but with cups of TEA. Get it? It’s all terribly cute while doing approximately nothing to address the paternalistic attitudes we fight so hard against.

We’ve tolerated this condescending language in the disability sector for a long time now, so perhaps we’re all partly to blame for Disability Care. We haven’t been talking about rights enough.

While in the UK last year, I noticed how differently disability is spoken about. Folks over there tend not to talk about ‘care’, ‘tolerance’ and ‘support’. They speak of ‘independent living’, ‘equality’ and ‘access’. And the strength of their movement makes it clear that they mean business. By contrast, we’re
decades behind.

It’s hardly surprising that Disability Care was the best the Government could come up with. We’re so used to framing people
with disabilities in terms of how we impact on non-disabled people (you know, the carers), that it would have simply been a bridge too far to hope for anything else.

Personally, I hate the name. I think it’s paternalistic, charity-model, carer-centric rubbish that does very little to empower people with disabilities to exercise the choice and control over our lives that the NDIS is intended to give us.

But, you know what I hate more than crappy names for things? Crappy services. People living with crappy mobility aids that keep them house-bound. People not having access to education, to employment, to their communities. I hate that there have been people living for decades without the support they need to live rich, full lives and participate in the cultural and economic life of Australia.

I hate the fact that Australia ranks last among the OECD nations for quality of life of people with disabilities; that we’re more than
twice as likely as those without disabilities to live near or below the poverty line; that our workforce participation rates are half that of
people without disabilities.

So, yes, I hate the name.

But I hate inequality more.

In all this commotion about a bad name, we’ve lost sight of what really happened this week. And that was something good.

This week, the National Disability Insurance Scheme became law.

It’s here.

We still have much to work on, and many people still have concerns about how the NDIS (oh sorry, I mean Disability Care) will take shape.

What took place in Parliament this week is historic. It will dramatically change the game for future generations of Australians with disabilities. We can now look to a future where Australians with disabilities can aspire to live rich, full lives.

We can start proving that we are not passive objects of pity and recipients of care, but equal members of society deserving of rights and respect.

Once we’ve changed the game, then we can change the name.”

Stella Young is the editor of ABC’s Ramp Up website

Warning, you are now entering the disability zone, where political correctness rules even if its consequences are stark raving mad – Mother told to sign over the family car to disabled son or lose access to the Disability Transport Scheme

Handicapped

Today I received a letter from the Transport Department telling me that unless I signed the title of my car over to my 16-year-old son with multiple disabilities, he would forfeit his rights to access the Disability Transport Scheme.

Puzzled and offended by this letter I rang the Transport Department to ask them whether or not they fully understood the lunacy of their request.

The gentleman I spoke to patiently explained to me that by law, all children upon turning the age of 16, had the right to seek a driver’s lisense  of their own and that the Transport Department were making this request as a form of acknowledgement that my son had the same rights as everyone else.

Now, before I continue on with this post I’d just like to make it clear that I love my son dearly and I have fought for his rights to equality all of his life and will continue to do so until the cows come home, but honestly, even I know that driving a car is something that he will never be able to safely do.

For a start he suffers from severe vertigo. He has nystagmus, which means that his eyes constantly flutter up and down so his field of vision is incredibly poor and he has both dyspraxia and ataxia which means that he can neither successfully co-ordinate or at times control his limbs.

So I’m pretty sure that he’d never get anywhere close to surviving a driving lesson let alone passing a driving test. Which is why I replied….

“Ah, I’m sorry, what?”

“This is all supposed to somehow  be about equality?”

“That’s correct” he answered.

“But my son is a young man who, given the nature of his many physical challenges, will never be able to drive a car. He’s on disability support payments for very good reasons” I responded.

“That doesn’t matter” I was told. “If either your son or yourself wish to continue receiving the benefits of the Disability Transport Scheme the car must be in you sons name, otherwise he will lose his entitlements.”

Apparently, as the mother of said disabled child and the owner of the car in question, I had no rights at all.

Just as importantly, nor was my son being given  the right to say no to any of this.

This was something that was being done for him, yet once again without either his request or his consent.

Equality? Please…….

You’ll have to excuse me but I nearly choked on the irony of it all.

I mean I’m sorry, but when was the last time the parents of a non-disabled 16-year-old were told to sign over the rights to the family car to their child or else lose all access to what ever subsidy scheme or tax break both they and their child may otherwise have been entitled too?

I’m guessing never!

So after I’d finally managed to swallow down enough of my ire to speak again I politely asked the gentleman just what was involved in the transfer of ownership process?

He replied that both my son and I would have to sign legal documents transferring the car into his name and that the Transport Department would kindly charge  no fee for this given that the circumstances involved pertained to an individual with a disability.

“But that’s just it ” I explained, “my son has several disabilities. He can’t even fully sign his name let alone drive a car. So apart from every thing else he has no signature to give you. So what would you qualify as a legal signature form him? Would you accept only his first name or do you require more ?” I asked him.

“Well we would require more and seeing as you’re his legal guardian…. you’d have to sign the paper work for him” he told me.

“Wait. Let me get this straight. You’re asking me to sign over the ownership of my family car over to my significantly challenged son who will never hold a drivers licence  whilst at the same time admitting to me that, given the level of my son’s disabilities, you expect me to sign the transfer forms on his behalf?”

“Yes. That is correct”.

“Do you have any idea how incredibly ridiculous this all sounds to me? You’re asking me to sign over my car to a child that you recognize can’t sign a form for himself, in order for him to retain the right to somehow one day magically drive a car that both the government and now you as a representative of the Transport Department have already recognized that he can’t drive?

“Ah….” pause…… “Yes, that’s correct. I”m sorry. I know it sounds bizarre but that’s just the way it is. You could choose not to sign over your car to your son but if you do so he will lose his rights to access the Disability Transport Scheme”.

“Even though he will still have a disability and still require transport? I inquired.

“Yes”

“Well, I guess you’d better send me the forms then.”

And they wonder why we, as parents of children and young adults with disabilities constantly feel as if  our lives are being swallowed up in bureaucratic  red tape.

It’s because they are.

So what will they  be asking me to sign away  next just to prove that they support the ideals of equality for those with disabilities?

The house?

Where will it all end and when oh when, will they finally see fit to consult the wishes of the people who they’re apparently applying all this red tape for?

When will they see that band-aid solutions to equality such as these only serve to further conceal the real voices of those with disabilities?

My son doesn’t want my car.

He wants me to drive him where ever he wishes to go and I’m already doing that willingly and with love.

Neither or us need a bunch of faceless bureaucrats telling us what to do or how to do it.

What we need is to be listened too when we tell them the things that will make our lives easier instead of harder, more unfair and in the grand scheme of things, further removed  from the ideals of equality they’re purportedly trying to ensure with all of their politically correct maneuverings.

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