Why Capitalism and Care – Like oil and water should never mix.

digital 4

The idea of turning ‘care’ into a commodity that can be bought and sold instead of acknowledged as a virtue of the human spirit that can be given willingly, is not a new one.

We’ve long paid doctors, nurses, psychologists, social workers, support workers and a whole host of others who belong to the so-called ‘Caring Professions’ for years.

But what’s changed in the last few decades are the amount of people now being employed in what has come to be known as the ‘Care Industry’.

And by this I mean workers who are not required to undergo years and years of study on how to ‘care’ for others, but instead workers who are simply doing a job with the label ‘Care’ stacked in front of it.

Such as those you’d find working in homes for the elderly or providing in home ‘care’ or assistance for those who are frail, ill or disabled within their own homes.

Once upon a time these workers may simply have been called ‘Domestic Help’, ‘Home Helpers’, ‘In Home Support Workers’ or Aides.

Today these same workers are called ‘Carers’.

Yet the thing is, despite the title they’ve been given, these workers are not carers because in reality, they do not truly care either for or about the people they are assisting once their allotted work period is over.

In other words, they are just like any other worker within a capitalist society in which every action that can possibly be bought and sold as labor is bought and sold, no matter the job description placed in front of it.

So once they are off the clock, just like any other worker, their job is done.

This means, in this case, that their allotted time for ‘caring’ is also done.

So employed ‘Carers’, in this sense, can be seen as merely workers who are performing a job and being paid for their time. Just like everyone else in the working world.

But people tend to forget this fact as soon as the term ‘carer’ is included within the job title.

Employed ‘Carers’ are often treated by others as if they are some kind of Florence Nightingale and the reason for this is quite simply to be found in the use of the term ‘carer’.

The word ‘Carer’ conjures up images of nurturing and self-sacrifice for the benefit of others.

Its use implies therefore that these workers not only do the practical things that are required but that they also actually care about the people they are working for in a way that means they are putting themselves out and going above and beyond the call of duty to help others.

Yet the truth is, if they weren’t being paid, they wouldn’t attend their work.

In other words, if they weren’t being paid to ‘care’ (i.e. do their jobs), then they wouldn’t ‘care’ (do their jobs).

So, in this instance the word ‘care’ is being used as euphemism for paid work assisting others.

Now where is the genuine care in that?

In fact where is the ‘care’ to be found within any of the so-called ‘care industries’?

Where’s the honest and genuine dedication toward making another’s life better or easier gone too?

These days, if you can’t pay for ‘care’, then you don’t get any ‘care’.

Unless of course that ‘care’ is being provided free of charge by a loving family member who genuinely wants the best for the relative they are caring for.

To my mind families are the real ‘carers’.

They don’t get paid and they never clock off.

They are the ones who share smiles and shed tears with their loved ones.

They live each and every trial of their loved ones life right alongside them.

They are never off call.

And yet, family members who willingly and lovingly assume the role of carers are routinely treated as if the time and energy they spend in ‘caring’ for a loved one is, in capitalist terms, worthless, for it has no immediate monetary value attached to it.

Familial carers do not get paid, not in the way that ‘employed carers’ do. If they are lucky they may receive some small stipend from the government, which is more often than not viewed by others as an unearned welfare payment, and yet these familial carers are the only ones who are ‘carers’ in the true sense of the word.

These true Carers find themselves caught up within a capitalistic system that devalues any work performed without monetary payment, whilst at the same time sets about promoting and deriving profits from the pseudo ‘care industry’ they’ve created.

One that has nothing what so ever to do with actually, genuinely caring for the wellbeing of others, and everything to do with caring only about their profit margins bottom line.

This isn’t ‘care’, it’s a capitalist industry that’s been artfully created by misappropriating a once genuine concept and turning it into yet another commodity to be bought and sold.

The Onus of Acceptance – Written by Jean Winegardner

“I recently got an email pitch from a company with a social skills product that claimed the product, “will enable [children with special needs] to be accepted by their peers throughout all aspects of their lives.”

I’m not actually sure what the product was because that sentence stopped me in my tracks.

“Be accepted.” I can’t stop thinking about that. “…will enable them to be accepted by their peers…”

I don’t even remember what the pitch was for because it made me so upset. Why the passive structure on that sentence? Why is the onus on the disabled to be accepted? Why is it our job to make you accept us?

Shouldn’t the real issue here be how to get the typical children to accept special needs kids?

I look at my beautiful, perfect, weirdo autistic son. He is not like his peers. He is also not always accepted. It would probably be easier in the long run for him to learn to “be accepted.”

Yet I look at him and the most damaging thing I can imagine saying to him is, “Maybe you should act like everyone else so kids like you more.”

Yes, I’ve put my son in social skills groups. Yes, I teach him about neurotypical society. Yes, I teach him how to navigate the world as it stands. But no, I do not teach him that he has to change so that the other kids will accept him. I tell him that I love him exactly the way he is. If kids are mean to him, I tell him that the problem is with them—not him.

I am a perfect example of someone who has adjusted her behavior to be accepted. At this point it is almost unconscious. I don’t know that it has been terribly damaging to do that. But it has been exhausting. And it is unfair.

I hear people making the argument all the time that people have to work to be accepted. I hear parents of typical kids, parents of autistic kids, and neuro-typical and neuro-diverse people alike say that you have to change yourself to fit in. To a degree, they are right. Most people work to get along with other people. We dress a certain way in business environments. We tend to alter our behavior based on the situation in which we find ourselves.

But these ways of fitting in and the fact that everyone does them doesn’t change the fact that society asks autistic kids and adults to change most of their behaviors and to deny their natural instincts for the purpose of becoming more palatable to the neuro-majority. Society isn’t asking autistic people to make the same adjustments as everyone else. Society is asking autistic people to suppress who they are almost all of the time.

Asking someone to change who they are to be accepted isn’t okay. It’s like asking a woman to learn not to be raped. It’s like asking a child to learn not to be abused. It’s like asking a victim to learn not to be bullied. I know those analogies aren’t exactly right, but that is what it feels like. If you want something to happen, you have to teach the actor—not the recipient.

I am happy that I hear more and more parents defending their kids’ rights to be who they are, society be damned, but I know that I also hear a lot of parents telling their kids that it is their job to fit in. I wonder if all parents—of both typical and autistic kids—stopped trying to help their kids fit in and just told them to be who they are—consequences be damned—if maybe those consequences would disappear.

Maybe the time has come to stop teaching our autistic kids to mold themselves into what society wants them to be. Maybe the answer isn’t to change autistic people until we are palatable to the world at large. Maybe we don’t need to keep working to “be accepted.”

Maybe the answer is to put the onus on everyone else to accept us.”

 Article sourced directly from http://autismwomensnetwork.org/node/1634

 

The Asperger’s Parenting Obstacle Course…… Why Hair Extensions Are Never A Good Idea.

How Could You Do This To Me, Mum?

 

Some days being a parent is like being expected to run 5 different obstacle courses simultaneously.

It’s always one step forward, three steps back.

 

And no matter what parenting move we might try and make in the present to please our children, it all too often ends up becoming the root cause of a wrong parenting move in the usually not too distant future.

 

A future that always appears to be, for some odd reason, so much further down the track than it really is.

 

Hidden out of sight where you  can’t see it and so have no hope what so ever of  making any  necessary corrections in the present in order to avoid making, what will eventually become, a wrong move in the future.

 

 

For instance……..

 

Hair Extensions by Bridget Christian (109)

 

After months and months of pleading, I eventually bought my daughter some inexpensive (AKA cheap) clip on hair extensions off e-bay.

 

She was delighted when they arrived in the mail and for a few short hours, well at least in her eyes; I could do no parenting wrong.

 

That was until I asked her if they came with any instructions as to how to put them in.

 

Which of course, being inexpensive, (okay, okay, cheap), they hadn’t come with any information of the ‘how to’ variety.

 

That was entirely my bad.

 

So instead of panicking, we found a “how to put in your clip on hair extensions’ demo on YouTube”.

 

We watched it together and suddenly I was back to being a wonderful parent again.

 

That was until I tried to actually clip the hair extensions into my daughter’s hair.

 

At which point she screamed loudly and them promptly expressed her opinion that I was either blind, stupid, hadn’t paid attention to the demo closely enough, or was deliberately trying to hurt her.

 

This of course placed me back in the worst, most stingiest parent in the world ever, camp.

 

Now this is the parental camp in which I usually spend weeks, months even, existing in.

If any of you have teenagers of your own I’m sure that you will be entirely familiar the place.

Apparently I only further increased my state of residence in this camp by pointing out to my daughter that if she’d tried sitting still and waiting patiently like the model in the demo had instead of wriggling about on her chair, things might now be going a bit smoother in the hair extension department than they currently were.

 

She of course, was very resistant my logical response and let me know about it in no uncertain but very colorful terms.

 

English: cup of coffee

 

At this point I figured ‘what the hey’, seeing I was already in the bad parenting camp, I may as well make myself a cup of coffee, settle in and stay a while longer.

 

So I picked up all of the hair extensions that I’d so carefully laid out on the table in order of their size and appropriate application position and walked away.

 

Dodging her resentful gaze as I went.

 

Right about that time she finally realized that if she wanted her new shiny and supposedly life altering hair extensions in, that she’d have to start playing nice.

 

And right on cue, from out of her mouth a whole string of apologies and flattery flew toward me:

 

“Please mum, I didn’t mean it mum,”

 

“I’ll sit still this time mum,”

 

“I’m sorry I promise mum,”

 

“You’re the best mum in the world for trying.”

 

Yes a child’s flattery will get a mother (almost) every single time. So, after letting her know that unless she held true to her word about sitting still the whole deal would be off, I slowly laid the extensions back out on the table and we began again.

 

And wouldn’t you know it? This time it worked.

 

Her hair looked amazing and she loved it.

 

Instant hugs.

Status as best ever Mum in the world had been briefly regained and peace in our house had been fully restored while she spent hours (and I do mean hours) admiring herself in the mirror and sending photos of her “new amazing hair” to all of her friends.

 

But, and you know that there’s always going to be a but coming somewhere.

 

But…..

 

Then it came time to take the hair extensions out.

 

This news apparently came as a rude shock to her.

 

She didn’t want to take them out.

 

She loved them.

 

She wanted to wear them to school the next day so that all of her friends could see them “for real”.

 

I didn’t care.

Those bad boys were coming out.

Whether she liked it or not.

 

Once again out came the charges of “bad parenting” as her outrage at being “made to do something she didn’t want to do” bubbled and brewed while she sat unwilling on our kitchen chair as I gently and methodically unclipped her extensions one by one and laid them neatly back on the table.

 

After I’d finished she glared up at me and said “fine, but I’ll be waking you up at 5 in the morning to put them all back in again.”

 

To which I emphatically replied, “No you will not. You are not wearing those to school. They are for special occasions. Not for school.”

 

“But mum, you don’t understand. You’re ruining my life! I promised everyone that I would wear them to school to show them. Now everyone’s going to think I’m a liar and they are going to hate me if I don’t wear them.”

 

Silence on my part.

 

“I hate you.

You’re a bad parent.

You don’t care about me.

All you care about is yourself”.

 

More silence on my part.

 

“Okay then, I’ll wake you up at 5-30 instead”.

 

At this point I reminded myself to breathe.

 

“All right, all right, 6 AM then but that’s my final offer” she shouts as she storms out of the kitchen and stomps up the stairs to her bedroom.

 

Following her statement up with the obligatory teenage door slam which works as an exclamation mark for any and all parental arguments.

 

Ah….. Conversation over. At last.  I’m going to bed. Good night.

 

At 6am the next morning she walks into my room with a cup of coffee ready to hand over to me.

 

Me, all bleary eyed  and slightly confused as to why she’s up without my having to drag her out of bed, but admittedly very impressed with the whole coffee angle that she’s got going on, till I suddenly remember,

‘Oh no, those bloody hair extensions again’.

 

So there she is hovering menacingly over my bed, with her hands on hips when the sounds of my son beginning to stir down stairs land in my ears.

And I understand right then and there that I’m just simply not up for the same level of fight that she is.

 

I also know that if I’m to have any hope at all of avoiding said immanent fight, I need to get going on her hair extensions immediately so that I can  have them all in place before my son (who needs help showering) requires my assistance.

 

More infuriatingly, she knows it too because any change in my sons routine can create untold degrees of catastrophe that have a strong tendency to rumble on throughout the entirety of his day.

 

So call me crazy, call me weak, call me on the fact that I’m setting a bad example for parents all over the world, but right then and there I didn’t care whether I was making the right parenting move or the wrong one, whether I was stepping forwards or stumbling back on myself.

 

I just wanted to get the whole hair extension nightmare that I’d unwittingly created for myself over and done with.

 

And amazingly the hair extensions went in quickly, with no problems at all and once again they looked fantastic and best of all I still hadn’t managed to throw my son’s daily routine out of whack.

 

Yay me.

 

Not!

 

Apparently, within the space of my daughters school day, a day which I might add I had nothing what so ever to do with, her friends had gone from telling her she looked gorgeous, to being chronically jealous.

 

Her glory day had turned into a stormy day and yes you guessed it, it was all my fault!

 

Once again I had “ruined my daughter’s life”.

 

Like I said, some days, parenting is like being expected to run 5 different obstacle courses all at the same time.

 

One step forward, three steps back.

 

And no matter what parenting move we might make to try and please our children in the present, it all too often ends up becoming the root cause of a wrong parenting move in the future.

 

Which is why I now say that the future should come complete with rear view mirrors at all times.

 

Instead of developing thicker skin……..

263808_484559686230_642051230_6556834_5096520_n

Instead of developing  thicker skin,

I wish the world,

Would instead,

Decide to become,

 A  little kinder.

Kinder to everyone,

Whether there be differences,

Or similarities,

Kinder to everyone,

Regardless of gender,

Kinder to everyone,

No matter their skin color,

Kinder to everyone,

Whether two or eighty,

Kinder to everyone,

No matter their IQ,

Just think of the world,

You could be living in,

If one day we decided,

To all be a little,

Kinder to everyone,

Kinder to you.

Breaking Point. The crisis facing parents of Young Adults with Special Needs in Australia.

Young couple with baby.

 

 

For some parents of special needs children, living the dream of having a happy home and family life, was simply never, ever going to be an option.

Last year SBS aired an ‘Insight’ forum discussion with parents of young adults with special needs  who have relinquished their child’s care over to the State as a consequence of not receiving the support they as individuals, carers, parents and families required to adequately maintain the level of care needed at home.

 

Many of the parents and family members who took part in the discussion stated that they had been calling for ” in home help” and support for years.

 

All to no avail.

 

Even on the rare occasions when  children had qualified for respite care, families were then told that the waiting lists for those respite services were months even years long.

 

One mother described dedicating months of valuable time having her child’s and her families level of need assessed, only to be told at the end of the assessment process, that although her family did indeed qualify for assistance there was no longer any funding available to provide the hours of  care support they had indeed qualified for.

 

Throughout this discussion families reported that their pleas for help and support went routinely unanswered and that the lack of recognition over their genuine need for support led ultimately to a state of crisis.

 

Parents found that it was only once they’d hit that state of absolute crisis and inability to cope with the daily care regimes of their special needs children that any help was offered at all.

 

By then however, the parents and families concerned, had often reached too deep a level of desperation and exhaustion to turn back from the relinquishing process.

 

Many stated that, if  instead of having their pleas ignored or told there was no funding, they’d received the support and respite needs they’d asked for over the course of many years,  then perhaps they may have been able to provide in home care for a longer period of time.

 

Though as one mother pointed out, that as young children with special needs grown into young adults with special needs, there will always be significant issues that parents as full-time carers will have to confront in terms of their child’s on going care needs.

 

Often this means confronting issues of personal safety as aging parents are left to care for adult children whose level of physical strength far out weighs  their own.

 

Parents also state that as full-time carers they literally cannot work outside the home. They therefore usually have no income other than the Carers Pension.

 

This means that they also have no Superannuation.  

 

So as  parental full-time carers of special needs children age, they very  often have little to no additional financial resources to fall back on.

 

This means that they can’t  ‘pay’ for private carers to help them and that unless their children/young adults  qualify for government support via support agencies, the parents are  placed in a position in which they have no option but to relinquish their children/young adults into State care.

 

As one mother says in relation to the charge that as families and parents they are failing in their responsibilities to care for their children…….

 

Our Children are not the burden. It is the broken system that is the burden not our beautiful children. If we could have gotten the help and support we needed to function as full-time carers, we’d still be doing it, but we couldn’t get any help until we’d reached crisis point and by then , for us as a family, it was too late.”

 

Another father wept as he openly admitted that he could never go back to the chaos, stress and daily depression he’d dealt with for years, while trying to get the support his family needed in order to properly care for his son at home.

 

Many parents who had relinquished the daily care of their young adults to the State also expressed that there was a sense in which the alleviation of the stress of having to maintain their young adults daily care routine, once again allowed them to become  parents who were able to fully delight in their child/young adult.

 

For families relinquishing care does not equate to handing a young adult over to the State and never seeing them again, as is the common understanding of relinquishing care. Instead it equates to the certainty of knowing that their young adult is receiving the daily care that they need.  The care is quite simply being provided outside of the home environment by people who are being paid to do so. This way of providing care enables all family members to maintain  full contact.

 

Though the expectation is that parents of children with special needs should automatically take on the role of full-time parental carers as their children grow into young adults with special needs, the experiences of some of the parents within this discussion  indicated that it is time to begin to address and challenge the many issues and inconsistencies involved with such an expectation.

 

The honesty with which these parents gave voice to an issue that is fast becoming a silent epidemic, shrouded in shame and personal blame is simply amazing.

 

I for one hope that discussions such as these continue to be brought out into the public arena so that those outside the experience of caring daily for a young adult with special needs can gain a greater understanding of the complexity of the issues facing not just young adults with special needs but also their parents as carer’s and their  entire family members.

 

Anyone interested in watching  Insight’s Breaking Point click on the link below.

 

http://www.sbs.com.au/ondemand/video/2272818399/Insight-Breaking-Point-Sarah-on-respite

 

 

External Hearts

As parents of special needs children,

We  have to learn to stand back,

To let our lovely ones,

Learn to begin to climb their own walls.

Yet this is so much easier said,

Than it ever will be done.

For having a child with Autism,

Is like living a life,

With your heart,

Constantly beating,

Outside of the safety,

Of your chest.

We are always so emotionally exposed.

No matter how strong we think we are,

Just a few unkind words,

Uttered toward or about our child,

Can pierce us in all of our softest places,

In ways,

That others may never,

Understand.

Perhaps this is why every barb,

Whether intentional or otherwise,

Leaves it’s mark.

So please understand that it’s hard for us,

All of this stepping back,

And letting go,

For our children are not just,

 A part of us,

They are,

Our very,

Hearts.

 

Parents of the Past

One thing that strikes me as being  so very wrong within the disability community is the overwhelming lack of recognition and respect afforded  to the parents of the past.

Over the past 4 decades inclusion has been achieved primarily through  the efforts of multitudes of parents, who have turned their hearts and  their minds, to the task of creating social and educational equity both for and on behalf of their children.

These brave parents of the past battled against levels of discrimination and prejudice that thankfully we can now only imagine.

They were the first to call for the recognition of their children’s basic human rights.

They were the first to confront the lack of knowledge, awareness and acceptance of their children within mainstream society.

They were the first to throw their shoulders against the walls of segregated education.

They were the first to rally around and raise awareness of the need for greater educational support, teacher aides  and social skills learning programs in schools.

The parents of the past were the ones who knocked down the very first walls.

They are the ones who  have  constructed the gateway to the  social and educational inclusion that so  many of us now gratefully walk our children through.

Over the last 4 decades they have been joined by successive waves of parents equally as committed to  taking on the challenge  of creating open hearts and minds.

Yet these parents of the past, to whom we owe so much, are rarely acknowledged or even mentioned within either the disability community or  society as a whole.

It’s time we paid homage to those who have gone before us.

Our generation did not begin the process of inclusion.

We were not there at the start of the fight.

We need to acknowledge that our current successes in gaining support and understanding for our children simply, would never have happened, without the courage, persistence and strength of the parents of the past.

So if you know an older parent of an adult with a disability, please do not disregard them as if they are irrelevant because they may be no longer in the fight…..

Instead, take the time to thank them for their contribution to the laying of the  path, you are now fortunate enough to be walking on.