Tag Archives: Disability

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?

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Beautiful Women

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If beauty,
Ever,
Only exists,
Within the eye,
Of the beholder,
Then I see you all,
As being,
Truly,
Strong,
Capable,
Beautiful,
Women.
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Remember when the NDIS was the NDIS? A Carer’s Lament.

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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.

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

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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

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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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Get Your Wheels Off My Space…Disability Parking….. Why aren’t the rules being enforced when it comes to disabled parking spaces?

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English: A disabled parking place in Torrens. ...

The lack of awareness and social courtesy surrounding the use of disabled parking has long been a bug bare of mine.

It’s a problem that I used to  routinely experience when either dropping my son off or picking him up from college.

My son has autism along with several other health issues which affect his muscle tone, his joints and his vision. He finds it incredibly difficult to walk for any distance or on uneven surfaces, hills or inclines and his muscles fatigue quickly causing him pain that can last for hours as a result.

His vision difficulties make navigating high traffic environments, such as parking lots, extremely dangerous for him as he can not judge how close he is to a car nor how fast it is moving.

In short, we have a disability parking permit for several very good reasons.

Yet despite this, we constantly find that we are unable to use most of the spaces allocated for disability parking because they are always filled with vehicles and drivers that shouldn’t be using them.

There are two disabled parking spaces located side by side in the top car park closest to the college’s main entrance but they are always filled with cars that do not have permits to use them.

Whilst I understand that it may be convenient for parents of non-disabled children to park themselves there and wait for their darlings to wander out of class, it’s still not appropriate nor even legal for them to do so.

Yet they continue taking up those spaces and no one at the college seems prepared to do anything about it.

In reality I’m sure all it would take would be one teacher or admin person standing  in front of the spaces telling people to move on if they don’t have a permit to fix the problem.

However no one at the college seems to feel that it’s in their job description to ensure the safety of disabled students within the car park.

Fed up with it all I remember glaring at a woman one day as I walked past her on my way to collecting my son from his classroom , while she sat in her car, parked in a disability parking space without a permit and stared back at me.

10 minutes later as I emerged from the college entrance with my son leaning on my arm and clearly having trouble walking, the woman who was still parked where she shouldn’t have been,  mouthed the word “sorry” to me and quickly looked away.

At least she apparently felt some modicum of guilt over her actions and whilst sorry may be a start, it didn’t help either my son or I that day as we struggled a good 15 meters further than we should have had too, just to reach the car.

To this day, those disability spaces are always filled with cars that shouldn’t be there.

Fortunately for my son, I discovered a disability parking space much further down in the college’s lower car park that is a walkable distance for him at the rear of the building.

Though it still annoys me that we have to enter and exit from the rear of the building like servants or those who shall remain unseen as it was  in the old days.

This problem is by no means reserved to school environments.

It’s everywhere.

Shopping center’s, public streets, pay and display car parks, even local sporting clubs.

Last week, while picking up my daughter from her trampolining lesson at the Police and Citizens Youth Club (PCYC)  with my son, I was forced to park down in the over flow car park, which is quite a distance away from the front doors of the building, all because a big sparkly new utility truck had taken up the one and only disabled parking space allocated to the entire parking lot.

Having to walk up an unpaved hill from the over flow car park to the front doors of the building was quite an effort for my son.  ( And no, before anyone goes there,  there is absolutely no way I’d even consider leaving him alone in a car surrounded by the darkness of an unlit and unfamiliar car park).

Once inside the doors I approached the receptionist and asked her if the spot out the front of the building was the only disabled car space they had.  She replied that it was so I then drew her attention to the fact that it was being used by a new utility truck that did not have a disability parking permit, where as we, on the other hand who do hold a disability parking permit were forced to park in the overflow car park and walk up.

She  apologized and said  “unfortunately it happens all the time.”

I was gob smacked by this response for two reasons, firstly the venue was the Police and Citizens Youth Club and secondly the disability parking spot could be clearly seen  from the reception desk.  Which means that the staff there, who are mainly either retired or current police officers volunteering their time, could see whether or not any vehicle parked there had the required disability permit.

So clearly the staff there  had decided to ignore the validity of the purpose of that parking space and turn a blind eye to those abusing it.

” Well this is the PCYC so I’m surprised that no one has done anything about it” I replied.

The receptionist, who was also wearing a police uniform I might add, then said, ” Yes we probably should do something about it. I’ll write a note and leave it on the car warning the owner of the car not to park there again. I think I know who it is anyway”.

What? A police officer opting for writing a warning note instead of fining the person concerned?

Once again I was gob smacked.

If this had happened on a street the offender would (or should) be fined. So why was this police officer opting for only leaving a note? Sure she might have officially been off duty but she could have called and had an on duty police officer issue an on the spot fine.

I don’t know about anyone else but I don’t get a warning note if my parking meter runs of out of money.

No I get a fine and an expired parking meter is a much smaller offense than illegally taking up a disabled parking space.

So why wasn’t this person getting a fine for abusing a disabled parking space instead of a polite note asking them not to do it again?

Still chewing on the irony of it all my son and I went and watched the last 15 minutes of my daughters class.

As we headed for the front door I could see the utility still parked there with piece of A4 paper stuck under its windscreen wiper.

I stopped at the car and read what she’d written on the paper.

“Please don’t park here again unless you have a disability permit”

Not much of a warning if you ask me.

So just what is it about disability parking spaces that makes those who don’t need them so apt to abusing them?

Is it simply that we live in a society whose cultural attitudes towards disability somehow makes it seem Okay for people to take advantage of our parking spaces?

Is it because our parking spaces are  usually located as close as possible to whatever building they’ve been allocated too and so therefore they’re simply too convenient not to abuse?

Or is it because no one seems interested in actually taking the proper actions in fining those who abuse them?

How can we get the message out there to others that it’s not Okay to take up a disability parking space just because it’s convenient or you think you can get away with it?

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The use of Recognition Theory within Disability Studies

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I’m currently looking at the potential for recognition theory to be used as a mechanism to explain how the discrepancies that continuously occur between the construction of policy and the genuine level of unmet need that those living with disabilities experience as a consequence of policy construction, arises.

So if there are any mega minds out there who are aware of any researchers within the area disability studies who are currently applying recognition theory to their work please, please, please, let me know.

Or even better, post a link.

Thank you!

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Is Asperger Syndrome simply a different way of being in and seeing the world as opposed to being a disability?

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This is a question that I have asked myself many times, because all too often it seems to me, that Asperger’s Syndrome is not, in and of itself a disability.

Especially not under the terms currently being used to define what a disability actually is.

To me Asperger’s Syndrome is more about experiencing a different way of seeing, understanding and being in the world, than it is about being unable to be in the world.

Here’s why I think this……

According to the World Health Organisation, a disability is…

“Any restriction or lack (resulting from any impairment) of ability to perform an activity in the manner or within the range considered normal for a human being”

Does having Asperger’s Syndrome prevent you from being able to act within a range that is considered normal for a human being?

What is considered normal?

Do you have to be constantly chatty, friendly, up-beat or one of the gang in order to be considered normal?

Or can you be shy, quiet and reclusive, yet competent and competitive and still be considered to be normal?

My experience would say yes.

Besides, if anything having Asperger’s heightens ones awareness of how to perform certain activities, it just does so in a different way.

So maybe it’s just the definition of disability in use then that’s the problem?

Here’s another definition of what a disability is.

“A disability is a condition or function judged to be significantly impaired relative to the usual standard of an individual or group. The term is used to refer to individual functioning, including physical impairment, sensory impairment, cognitive impairment, intellectual impairment mental illness, and various types of chronic disease.”

Citation: Disabled World News – Definition of disability including types of disabilities and the social model of disabilities: http://www.disabled-world.com/disability/types/#ixzz2H0bfh73s

So does having Asperger’s mean that you are “significantly impaired relative to the usual standard of an individual or group”?

Well, once again, I would say no.

Having Asperger’s may mean that you are “different” when compared to the relative or usual standard of a group, but it does not necessarily mean that you are “significantly impaired”.

Nor does it mean that you are unable “to perform an activity in the manner or within the range considered normal for a human being.”

 

So what’s considered normal anyway?

If you can go to your job and do that job well but have trouble conversing with your work mates, are you disabled or just different?

If you can get married, raise a family, but not be particularly social, are you different or disabled?

Are we becoming guilty of using out dated concepts in order to try and clarify ‘being different’ as a ‘disability’?

And if we are guilty of this, then how will replacing the concept of   Asperger’s Syndrome by engulfing it within the wider framework  of low functioning and high functioning Autism help us to gain a clearer understanding of Asperger’s as being differently abled and not disabled?

What do you think?

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Too Many Words

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Too many words,

Written in haste,

Serve to castigate,

Denigrate,

And differentiate,

The abberent form,

Too many words,

Seek to define,

And divide,

Our shared humanness,

As if Disability and Ability,

Were issues separated,

One from the other,

In some seemingly distant,

Mysteriously held,

Genetic planet.

This constant search,

For an un-caused effect,

Ceaselessly runs through my universe,

Without pausing once to consider,

The processes of due care,

Or  the consequences,

Of  un-scripting nature,

With  such reckless,

Discontent.

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A Letter to Me 20 Years From Now

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I’ve been reading a lot of posts written by bloggers responding to the daily prompt ;

Write a letter to yourself 20 years from now.

Many of the letters, especially those written by parents to their children, anticipating that their children will be grown up and living independent adult lives of their own in 20 years time, have made me consider both my own future with my son and the many privileges those with non-disabled children take fore granted.

Before I continue on with this post, let me just put it out there, that the future is somewhat of a scary place for me to think about and it always has been.

Ever since my son with special needs was born, the next month, the next week, hell at times, even the next day, have all seemed like moments in time that were either too far away or simply too scary for me to contemplate.

The future for me has always been the great unknown.

Something that would happen some how over there, off  in the distance, in a land well beyond the grasp of my own limited reach.

The here and now, the present, has always been so full on, so filled with one form of crisis or another.

For years I was told that my son wouldn’t walk, talk or ever function normally.

Still I persisted in taking him to therapy.

By the age of 4 he was walking.

Well kind of.

Sure he needed a kiddie sized walking frame to hold on to, but he was walking.

By the age of 5 he was talking.

Well kind of.

He was beginning to make the sounds of  the first letter in his own first name.

By the time he was 6 he was walking independently and speaking the odd word.

No sentences, just words.

And that was fine by me.

So for me, every idea of what the future would, could or even should be, has already changed so drastically over the course of my son’s lifetime, that I hardly dare to dream of what the future may bring.

But never the less,  here is the letter that I hope with all my heart will describe me in that far off distant land 20 years from now.

Remember all that you have done in the last 20 years and just for once,

Let yourself celebrate.

You have gotten all of your children, and especially your son, safely through High School.

You have seen them all graduate  from college successfully along with their peers.

Even when it meant that you had to go in and work voluntarily as a full-time aide for your son.

You know that you have helped the one who has needed you most,

Live a life that has been as full,

  In every possible way,

Each and every day.

Even if it meant,

That when there were no clear paths laid out before you,

You went in and carved out your own.

A pathway that in the end,

Was not just wide enough for two,

But one that was wide enough for  all of your sons special needs  peers,

And their parents to walk through after you.

Remember that when there were no gates for you to walk through,

You didn’t give up.

Instead you hammered away against the walls of prejudice,

Until they’d crumbled into fences.

Once those fences appeared,

You set to building a gateway.

Once that gateway was in place,

You lifted  your son’s hand,

And helped him lift the latch.

And kept him balanced,

As he tentatively nudged  it open.

Once opened you stood behind him,

For moral support,

  And watched as he independently,

Walked on through with his head held high.

In these last 20 years,

You haven’t changed the world,

Or even come anywhere close to it,

But you have changed your son’s life,

Refusing to let others treat him as if he weren’t as important,

Or as valuable a member of the family,

As his brother and sister.

Who have now both long since graduated university,

And gone on to become equal rights lawyers.

See all those years of world-class arguing were worth it.

You did it.

He did it,

They did it.

And most importantly of all,

As a family,

We did it,

We made it through.

So cut yourself some slack,

And try,

Just for once,

To sleep the whole night through.

You have many battles ahead of you but,

It will be all right,

I promise you.

You will all make it through.

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