Genetic Screening. Just Where Do We Draw The Line And Why?

Genetic testing

 

After watching the debate on Insight regarding genetic screening I have to say that I am more concerned than ever about the increasing  push to expand the reach of genetic screening onto unborn baby’s.

 

Among many of the issues raised but not discussed, were the questions of just what sort of message are we sending to children and adults who are currently living with disabilities or genetic conditions that are now openly being described both publicly and professionally as having diseases that are presumed to greatly diminish their quality of life?

 

Don’t such ideas fly in the face of all the achievements  that those within the disability movement have fought so hard and long for?

 

Are we now to turn our backs on the rights of the disabled just because umpteen different variants of the human condition can potentially be screened for and eradicated before birth?

 

Two of the panel members debating this topic did indeed hold the distinction of having the very genetic conditions being labeled by other panelists as diminutive of their life.

 

Both disagreed with the underlying premise that having a disability or a genetic condition necessarily diminished their capacities to live a full and rewarding life.

 

Both flagged their contention over the possible harm such statements might cause to those already living with such conditions.

 

However, their further contention that viewing disabilities in this way may cause an erosion of the health care services that so many rely on to live their lives was significantly silenced by the story of a mother with a severely disabled child who stated that, if genetic screening had made her aware of her son’s condition prior to giving birth to him, she would have terminated him.

 

The question was then asked of her by one of the panelists with a disability, whether or not having better support and care services available to both herself and her son, might have made  her change her mind, and decide that her son’s life would still be worth living.

 

To which the mother  replied, that having better support services would make her life easier, but that they would not necessarily maker her son’s life any better. So no, the potential for having greater support services would not make her changer her mind on this issue.

 

As the mother of a much-loved son with Autism, I found myself torn by this debate.

 

My pro-active side wanted to agree whole heartedly with the need to pull back on the reigns of prenatal genetic screening and to scream at the protagonists who were all gung-ho for it, that my son, like thousands of others,  although differently able, is still a sentient human being with loves and hopes and dreams.

 

A human being whose right to life is just as pertinent as anyone elses is.

 

Yet, when I looked more closely, there was another side of me vying for my attention.

 

The side of me that drank in and acknowledged that other mother’s pain at having to watch her severely disabled son suffer daily seizures and take in her anguish at knowing that her son’s genetic condition could have been tested for. That she’d even asked for it to be tested for, and yet that testing had not been carried out.

 

As a consequence of this she felt let down and betrayed.

 

Left with a life that she was not prepared for and was not of her choosing.

 

Yet despite this, her anger and sense of betrayal  was not directed at her son,whom she loved and has devoted herself to caring for,  but at the physicians in whom she’d placed her trust all those years ago.

 

To me this issue  and the way it was presented begs oh so many questions.

 

If we place our reproductive trust purely in the hands of physicians then how do we know that we won’t all end up being betrayed?

 

If a woman, who has already decided that she is not willing or able to raise a disabled child asks for genetic screening, is she wrong to do so?

 

And if she’s not wrong, then why are we even having this debate about genetic screening in the first place?

 

On the flip side of the above thinking is the question of whether or not this is even an issue that can be succinctly condensed down into the auspices of a woman’s choice ?

 

Some how it feels as if it is an issue that is so much broader and more intricately embroidered within the more fundamental question of what it actually means to engage with the human condition in all it’s many and varied forms.

 

I cannot see how something so big could possibly ever be defined by the parameters of  personal choice alone?

 

And if it ever is then what are we to think  about the right to life?

 

Would that right to life then only apply to those who have a genetically screened and superior right to life?

 

Would we all begin to live in Huxley’s ‘Brave New World‘?

 

And what would happen to the disability care industry if our governments voted to open the flood gates on genetic screening? Would it slowly crumble and then fade away because hypothetically its potential for market growth would be destroyed? Leaving the thousands who currently already rely on and need that support floundering within an even more inadequate system of care?

 

Would it go from boom to bust with the stroke of just one bureaucratic pen?

 

Just where is the line in the sand to be drawn?

 

And what will that line, where ever it is placed, say about us as a society?

 

Will it define us as a society capable of holding more than one definitive way of valuing life  of decry us as a race of  Darwinian beings interested only in producing selectively superior progeny?

 

 

 

True signs of life

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Limbs that move beyond intent,

Hold courage in the smallest movements,

All the words that they may never whisper

Belie the loudness of their insight,

As they call to you within their silence,

I am,

I live,

I fight,

These are,

The true signs of life.

The Illusion of Inclusion : Bad dream or lived experience?

“Inclusion is tolerated to a degree because … it’s part of our policy. It’s part of our law.

So it’s tolerated to a point. Acceptance, I’m not so sure…. acceptance is a completely

different thing… you have to live it and feel it  to know the depth of the emotions

involved”  (Father of two teenagers with cognitive disabilities).

The arena of educational inclusion poses a significantly  growing challenge to policy  makers and parents alike  in which the need  for the development of an education policy that effectively facilitates  the educational and social inclusion of disabled children and their parents’ within the processes of inclusion is required.  Rises in the level of students within Australian schools diagnosed as having a cognitive disability, dysfunction or delay  (Australian Institute of Health and Welfare, 2008:8) make this category of disability an increasingly significant area of concern within both the framework of contemporary educational policies and parental experiences of educational inclusion. In focusing specifically on the ways in which parents of  children with a diagnosed  intellectual delay or  cognitive dysfunction (Autism, ADHD, ADD PDD-NOS, Global Delay)  experience educational inclusion, this paper speaks to an increasingly important area within educational policy formation and implementation.

This investigation approaches the educational inclusion of children with cognitive disabilities as an important and challenging issue which holds the potential to impact on both the human rights of children with cognitive disabilities and their parents alike.  It therefore recognises the multiple structural restraints through which parents must navigate their child’s process of inclusion within schools.  As such it supports calls for parents to be given “  an ongoing voice in the development of the policies and strategies that affect their lives” (Shut Out: The Experience of People with Disabilities and their Families in Australia, 2009:vi).

Educational inclusion within Australia is now being enacted within an anti-discrimination policy framework which promotes the incorporation of inclusive education as a standardised form of educational practice for children with cognitive impairments (Better Pathways, 2006:3). It is within this anti-discrimination policy based frame work that  parents of children with cognitive disabilities are required  to access and provide formal medical confirmation of their child’s disability and allow additional IQ testing of their children in order for schools to request funding and aids. Within this framework parents are also designated the role of having to negotiate with staff and schools to implement strategies that ensure their child’s needs are met in ways that parents of non-disabled children are not required to do.  Yet despite the integral role that parents of children with disabilities play in facilitating their child’s educational inclusion, the impacts, experiences and understandings of inclusion, including  the processes and practices through which it is implemented, have rarely been studied from a parental perspective.

This paper upholds parental perspectives through  investigating the ways in which broader understandings  of the policy of social inclusion shape and inform their  expectations of the inclusion process and how in turn the processes and practices of inclusion are experienced in relation to such policy ideals.  This appraoch enables parents,  within a research format , to inform policy and academic discussions as to whether or not  the practices of inclusion reflect the broader ideals outlined within  inclusive educational policies and practices (Runswick-Cole, 2008:176).  Such an approach empowers parental voices by removing  control of the topic of educational inclusion from the confines of   academic and educational professionals .

In so doing this investigation found  that there are significant disparities  being experienced between the policy based ideal of inclusion as a pathway toward equality and the  lived  parental experiences of their children’s negation and exclusion within the inclusion process . For many parents within this study inclusion is seen to operate via a process of exclusion due to the multiple processes  and measures their children are required to undergo  in order to achieve funding. Through the use of  additional measures such as IQ testing  a child with a recognised disability may be ruled ineligible for support and therefore be  excluded from the inclusion process. Such processes create the arena in which parents express having to continually  fight for their child’s support needs to be acknowledged and met.  For these parents the ideals of inclusion have become an illusion.

“People think that because my son has Asperger’s but goes to a mainstream school that he must be ok and that things must be getting better. You know…. That kids with disabilities are being accepted….That inclusion is working. But what they don’t see is that my son is struggling. He gets no support from the school because he doesn’t qualify even though the doctor said that he has Asperger’s. He spends his  time at school alone in the library. The other kids don’t accept him. This frustrates me because I can see that he really does need the help but I can’t get the school to see that. I feel like I’m always on the phone asking for support for him but never getting anywhere. It’s like this constant bad dream that I can’t  wake up from and I can’t get anyone at the school to pay attention to me. ”

This investigation concludes  that despite the broader policy of equality upon which educational inclusion is founded,  the successful  inclusion  of  children with cognitive disabilities within schools is still being hampered by the lack of regard, understanding, professionalism and support  that parents describe experiencing and the  overall unwillingness of schools to individually tailor learning packages for those with cognitive differences.  Parental experiences of educational inclusion therefore indicate the need to further examine, expose  and replace the structural and systemic restraints currently being implemented within the Australian education system.