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Chronicling intimate details of a child with Muscular Dystrophy on Facebook

At what point does a well-meaning parent go too far with sharing intimate details of their child’s fight against Muscular Dystrophy?

It’s a cruel question to ask in a way – because imagine putting yourself into a situation where you’ve just been told that your child might not live past the age of ten.

Add onto that, in 2017, nearly everything is shared with the world through social media, right?

Perhaps it is a sign of the times – but the reality is now days that even the worst of situations can draw a big following of keen eyes ready to hit the keyboard and ‘get behind the crusade’.

Even if we overlook that the children themselves cannot fully consent or understand the realities of having so much of their young lives broadcast on Facebook. Not only that, but they quickly become the young man that ‘lives with and battles being disabled’ in the eyes of many people.

Facebook has been a place for hundreds of awareness, fundraising, and journey-sharing pages aimed at engaging with a local and international community online.

For people with disabilities and their families, Facebook is used to connect with others in similar situations, most of the time for knowledge sharing, and just some basic connection with people sharing the same difficulties as faced by life with a disability.

Some individuals have decided to share the journey of their child living with Muscular Dystrophy in a bid to help others, and gain some support at the same time.

A Heartless Question Or A Starc Reality?

These pages are also a reflection of the battle that countless others face.

Over in the United States, and even now in Australia, early signs of successful drug treatments for children with SMA (a similar but less lethal condition than Muscular Dystrophy) are beginning to gather momentum.

These stories are getting large followings. More importantly, it is creating a much larger awareness than ever before.

It all comes down to a question of what becomes too much and what is really in the best interests of that person.

A young child cannot fully consent to their parent sharing these details of their lives, and they especially cannot understand the image that it generates. But, because of their age and lack of exposure to the world, taking the word of their parent is the obvious choice.

Arguing that the child is somehow more exposed to the world because of the difficulties they face due to their condition doesn’t cut it.

A consenting adult is a different scenario altogether and isn’t the case of a parent speaking for the child.

It is a matter of dignity and privacy – something any child should have regardless of the difficulties they and their parents face.

1 comment

  1. My son is 47 with Becker MD it is not has disabilitaiting has Duchain I’ve seen pain in him he has never complained 11 when found out had it in wheelchair some years now to fight for everything he needs disgusting

    Like

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