A Different Life – By Donna Woods

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Before you were born
 I imagined how it would be
 And what I'd say to you
 And what you would say to me
I pictured what we would do
 And I planned what life would hold
 But all of that had to change
 The day that I was told
A different life awaited us
 From the one that I had thought
 And a lesson in Autism
 Was going to be taught
Things would be difficult
 And times could be tough
 I would sometimes wonder
 Why my love is just not enough
But then I'd come to realise
 That the journey that we're on
 Is just a different route
 And it sometimes may feel long
I'd have to think of other ways
 To meet the dreams I'd planned
 Autism had placed me
 In a new and mysterious land
We could still have fun
 And we could still learn
 Even if some days
 I didn't know which way to turn
Although life was different
 I'd make sure it was complete
 I wouldn't give up on life
 And I wouldn't admit defeat
There would still be a world out there
 For us to seek and explore
 And for you I would do anything
 My special child who I adore
Before you were born
 I planned our life together
 And I'll be there to hold your hand
 Today, tomorrow and forever

© Donna Woods 2013

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Autism Does Not Equal Sterility. Combating the cruelty and ignorance of the words of others.

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My son was returned home to me, pale and extremely subdued, after his weekend visit at his dads on Sunday afternoon.

 

I could tell instantly that something was very wrong, but when I asked him about it he just said that he wanted to go to his room.

 

So he after he’d been in his room for a while I went in to check on him.

 

iamsam3He was crying and watching the movieI Am Sam” on his computer.

 

The movie “I Am Sam” has always made my son cry.

 

Yet he continuously watches it because just like Sam, he too dreams of becoming a father one day.

 

His desire to become a father and experience the joys of raising a child has always been on the top of my son’s wish list for as long as any of us can remember.

 

Even as a child, he’d continuously express his desire to hold and care for babies.

 

His little hands would always be awkwardly reaching out toward the nearest person smaller than himself.

 

Anyone who truly knows my son also can’t help but know this one very important fact about him.

 

Because of this, I am the first to admit that my son’s relationship to the movie “I Am Sam” is a complicated one.

 

He loves to watch it because although it upsets him, it also fills him with the hope that fatherhood for him need not be an impossible dream but instead can become a reachable reality.

 

He relates to this movie on such a deep level because it is the only movie of its kind that portrays an adult, especially a man with an intellectual disability, as being capable of genuinely caring for others, of having a sexual relationship with another special needs adult, and most importantly, of becoming a loving and devoted father despite his own personal circumstances.

 

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My son is clearly smart enough to know, that the story line contained within the movie, is not beyond the realm of possibility.

 

For this reason, he fears that one day, when he does become a father, there may be someone out there who will try to legally remove his baby from his care, as was done to Sam, by claiming that his status as an adult with special needs makes him an unfit parent.

 

Usually my son will watch the movie, cry and then come and seek reassurance from me that I will never, ever let anyone take away his baby when he has one.

 

This time however, he wouldn’t come out of his room and talk to me.

 

Despite my best efforts he chose to remain within the solitude of in his room all night.

 

This morning when he woke up, he looked even paler and refused to eat his breakfast.

 

Yet he insisted on going to College, as he’s just met a girl that he really likes and he said that he wanted to be near her.

 

Okay. So we get ready and we’re driving in the car when he suddenly breaks down again.

 

Only this time he’s not just silently crying the way he was in his bedroom the night before.

 

This time he’s physically dissolving into great heaving sobs of sadness as he sits in his seat right beside me.

 

I pull over and take him in my arms and ask him again what’s wrong.

 

It is only then that the awful truth finally comes tumbling, haltingly, out of his mouth and the cruel gravity of what’s been said to him whilst at his father’s house, hits me like a red-hot arrow straight to the heart.

 

408967_10150524201273318_535028317_9097053_1821249456_nOn Sunday, whilst they were alone, his father’s new wife took it upon herself to tell my son that he’d “never ever be able to have children of his own because he has Autism and his genetics are all wrong.”

 

He said she then told him to “stop talking about it because she was tired of hearing it and it’s never going to happen anyway so just get over it.”

 

Her words must have felt like bullets to him.

 

Delivered as they were in such an incredibly cold and cruel (and if I were a lesser person I’d also say a deliberately well calculated) way.

 

The impact they had had on him had quite literally cut into the very core of his being.

 

I kept my own sense of rage in check as I tried to calmly reassure him that ‘her’ words weren’t true.

 

Then I remembered that I had a letter from my son’s geneticist still in my bag from the week before. I grabbed it out and read the last line of it out to him……

 

“As we discussed in our previous visit, I look forward to seeing James again when he decides it’s time  for him to have children as there is no reason why his desire to become a father should not be realized.”

 

Fortunately for us, we had seen the Geneticist in November of last year and James had asked him whether or not he would be able to have children.

 

Though initially taken aback by the question, coming as it was from a 16-year-old with Autism and a chromosome deletion to boot, the geneticist answered my son by telling him that there was no reason why, with due care, he could not have children.

 

He also told him that the best way forward with having children would probably be to look at some form of IVF so that they can check any future embryo’s to see if they are carrying any chromosome deletions before implanting them.

 

The whole issue of IVF took quite a bit of explaining later at home, but I still remember the smile that almost split my son’s face  in two once the penny had dropped and the realization that he could truly become a father without causing any genetic harm to his baby finally hit home to him.

 

I tell you, never have I felt so pleased to have doggedly persisted in chasing down the necessary genetic screening tests for my son and never have I felt so relieved to have fallen down on my self-appointed task of judiciously filing away all of James important documents, as I did today.

 

My son sobbed some more as we sat there in our rain splattered car, then slowly, he lifted his head and warily glanced in the general direction of my face.

 

“You promise me I can have children?” he asked me.

 

‘Yes I promise’ I told him. ‘Look here it is in writing. In good old black and white. And you remember don’t you how happy you were when the geneticist said that you could have children?’

 

He nods and blows his nose. His tears slowly stop falling.

 

“So what she said isn’t true?” He asks one more time.

 

“No it’s not true. This,” I say waving the letter in my hand toward him, “this is true.”

 

“But she’s a nurse. She said she knows about this kind of thing”.

 

‘I don’t care what she is. She’s is wrong.”

 

Finally, as a parent, I had the ability to not only answer my son’s questions but to also defend his truths and validate the personal worth and integrity of his dreams against the erosion of harm and doubt that other people’s words of ignorance had caused him.

 

To prove it I hand him the letter.

 

He looks at it as if he’s reading it but I know there’s no way his vision is clear enough to read such small writing.

 

Never the less, he smiles.

 

Folds it up and asks if he can take it to College with him.

 

Normally I’d say no. Not till I’ve made a copy of it.

 

But today……?

 

Today I say….. Yes.

 

YES!

 

Because if nothing else, he needs a yes after enduring God knows how ever many hours of the cruelty of ignorance he’s forced to endure at his father’s house.

 

And as we all know, ignorance is the curse that those with Autism are far too often forced to deal with every day in our society.

 

The curse that follows you home and invades not just your outer space but your inner space as well. Silently shedding its doubts on all of your personal thoughts, your hopes and your dreams, long after the echoes of the words once spoken have disappeared.

 

The Medicalisation of Difference, Homosexuality, Women, Pregnancy and Birth

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Kate Cregan (2006), in her work “Mapping The Human Body”  sites the example of the non existence of  homosexuality until it was labelled and defined by the medical fraternity in the late nineteenth century as a clear and present example of the  very capacity of the medical system to both construct label and define it’s meaning.

 

“Homosexuality became known in a medico-legal way within particular knowledge systems that there after have controlled its meaning” (Cregan, 2006 :46). Deborah Lupton (2003) in her work  ‘ Medicine as Culture’ also draws attention to the way in which the medical establishments definitional power is at play in the twenty-first century siting the medical professions latest assertion that genetics may be able to predict illness as  evidence that“ the knowledge base of scientific medicine has encroached even further into defining the limits of normality and the proper functioning and deportment of the human body” (Lupton, 2003:1).

 

According to Lupton (2003) this desire for the control and regulation of the human body is particularly pertinent to pregnant women enmeshed within  a health system that  seeks “increasing  control over women’s bodies” through  medicalization and surveillance (Lupton,2003:158).

 

The regulational and  definitional power with which medical institutions control and regulate the female body can be seen clearly in Karen Lanes work on pregnant women.   Siting Ulrich Beck’s analysis of risk in the modern world, Lane shows how the very notion of ’risk’ has now, through a medically induced process, become synonymous with the biological acts of both pregnancy and of giving birth, so much so than women who choose not to give birth in a hospital setting are often accused of not caring for or risking the health of their unborn babies ( Lane, date, page).

 

The irony that  for hundreds of years giving birth has been regarded as a ‘natural’ biological act that has now been medicalized beyond the point of individual choice for the women concerned, indicates the immense capacity of  medicalised perceptions to invade and persuade social thought and individual behaviour (Lupton,2003: 159). As Norbert Elias noted  “this kind of dictum ignores the wide variability  of bodily development and leads to  the patholigisation of what are essentially natural bodily functions” ( Cregan, 2006: 30).

 

The control mechanisms set in place within the debate over the safety of homebirths are themselves defined by the medical establishment that provides the very power base with which it seeks to regulate and control the human body and clearly earmarks how in  “post modern embodiment, we have internalized the control mechanisms that are set in place by various authorities of delimitation institutionally legitimated epistemologies”  (Cregan, 2006: 59).

 

The fact that pregnant women even feel the need to seek medical permission to engage in a home birth  provides proof of just how medically regulated and controlled such biologically natural processes have become and reinforces Foucault’s initial observation that such definitional capacity “results in a more subtle and diffuse power by which we internalize regimes of control and learn to self-regulate our selves through the regulation of the body” ( Cregan, 2006 :41).