DiversityNZ logo

Posted by Philip on 30 October 2015, 8:07 am in , , , , , , , ,

Decision polarity and the space in between – reflection on the Charley Hooper situation

I am concerned by the ethical argument brewing between the parents of Charley Hooper — who have finished a series of surgeries and hormone therapy to contain her growth and development — and disability/human rights advocates like Disability Rights Commisioner Paul Gibson — who has said the procedure was "unnecessary" and "inconsistent with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD)."

The Hoopers say they have "no regrets" about stopping the growth of their daughter — who "has less control over her body than a newborn, with no head control and no purposeful movement of any limbs. She is blind and does not recognise anyone, including her parents." The procedure has also stopped Charley from having 200 seizures per day and has resulted in her smiling for the first time.

Gibson is calling for a law change to protect the rights of disabled children as a result of the Hooper situation. But whose call is it to define the "rights" and "protection" of children in circumstances such as this?

For Gibson, rights and protection mean that Charley would have become a woman with no control over her body. She probably would have needed hoists to lift her, support managing her menstruation including its effects on her body, andmay have spent a life lying in bed due to mobility difficulties.

For Mark and Jenn Hooper, they "knew that as soon as Charley was too big to lift without a hoist, she was housebound. The world is not set up for this top 0.1 percent of severe, severe disability.

"Ramps and whatever, that's all one thing, but being able to change her nappy - it becomes impossible [if she were big enough to require a hoist]."

The Care of Children Act (CCA) allows parents of disabled children to agree to treatment on behalf of the child. Gibson wants the Act changed to require a judge to specifically authorise unnecessary treatment.

And so, after questioning rights and protection, we now have to define "unnecessary" — or rather "necessary" — treatment for children. Is orthodontic treatment necessary? Were the countless surgeries I had as a child to lengthen tendons so I could walk (bearing in mind I now can't walk) — were they necessary? How many court cases would we see where parents had to make a case for doing what they think is right and protective for their children?

Agreements like the UNCRPD and Acts like the CCA serve very different purposes. The former is a blunt instrument that, seldom effectively, expresses an ideal for society. The latter is a tool to ensure the protection of individuals on a case-by-case basis.

In between, however, is a grey area that is blurry and indistinct. It is laden with human frailty, vulnerability, compassion and trust. It requires the discomfort of uncertainty and the willingness for choice.

In my view, arguing about the distinction between collective and individual rights, or ideals and reality, only creates blame and shame — and that's the unnecessary part. Supporting people like the Hoopers to make the best decision for their child, however unique and unusual it may be, serves a much more constructive purpose.

Follow on Bloglovin

Get more diversity at DiversityNZ.com

You are welcome to share this post freely and without permission. Acknowledgement and a link back to this site is appreciated. And please leave a comment if you wish – I'd be interested to know where I've ended up.

Creative Commons License
This work is licensed under a Creative Commons Attribution-ShareAlike 3.0 Unported License.