The Normality Beyond A Disability

This article was originally published at Right Now: Human Rights in Australia


Ugly: My Memoir | Hachette

Ugly-coverWhen Robert Hoge was born he did not spend his first month bonding, as babies do, with his parents, in particular with his mother. Instead, he spent the first month and five days in the nursery in a hospital in Brisbane while his mother decided whether or not to bring him home to become a part of her family’s life.

Robert was a special baby; he was born with a tumor that had formed during the early development phase. It affected his appearance and was compounded by the fact that his legs were also deformed. By his own admission he became an instant member of the “Ugly Club”. Keenly aware of the limitations that Robert would experience socially, emotionally and physically, his mother soon became his biggest advocate and became determined that he would live a life similar to that of his siblings – with access to education, healthcare and everything else a growing child could want for to ensure a successful, fulfilling and happy life. Robert went home to meet his siblings and from then on was a member of the Hoge family.

Ugly: My Memoir is the intimate tale of Robert Hoge from birth through to university and on to his own journey of having a child. Not one for letting his physical disabilities interfere with living life, Ugly is a unique deeply moving story about Robert and his family, for it illustrates how disability can be overcome to an extent through the support and love of family and friends.

Robert is encouraged to take up opportunities as they arise and becomes involved in all aspects of social life that he can – indeed, sometimes too enthusiastically such as the time he took off his prosthetic legs to go faster down the toboggan ride which very nearly killed him. The narrative is engaging and honest and it is an enjoyable and interesting read, not just for the medical insights into operations to deal with his deformity, but for the picture it paints of growing up in suburban Australia where childhood and adolescent crushes are as abundant as late nights at university – in other words, his disability was never a disabling factor in him living and loving life.

Robert Hoge shows us that some forms of disability need not inhibit the ability of a person to achieve what they want in society. His strength of character and ability to go after what he wants proves this – in fact, his experiences make him more determined to achieve what he wants from life.

Without the strength and advocacy of his family and those who supported him along his journey in his early years things may have turned out differently for Robert. Even now, having a disability often means being subjected to opinion and actions that exclude a person from actively participating in relationships and situations within society. In Ugly, Robert illustrates the normality of his being – his disability is just on the surface, his strength and humility is what makes him a human being, and that’s something that all of us share regardless of our physical representations.

Human rights off the table?

Street scene in Beijing

Street scene in Beijing

This article was originally published at G20 Watch

Given that the G20 is being billed as the most significant leadership meeting that Australia has ever hosted and will ‘address the global growth challenge in an ambitious and meaningful way” we need to ask where the discussion on human rights is taking place.

Should we be worried that there appears to be a distinct lack of reference to human rights at the biggest meeting of world leaders? Does it really matter if human rights are not discussed openly, if at all, in reference to global economic growth?

In a word, yes, because the absence of discussion that takes into account human rights obligations and responsibilities means that the Summit may make recommendations that are counter-intuitive to current human rights instruments.

Take for example The International Covenant on Economic, Social and Cultural Rights (ICESCR)which focuses on socio-economic rights and responsibilities such as labour rights, access to education, standards of living and the right to health.  All G20 members have ratified the Covenant except for the US, Saudi Arabia and the EU (France and Germany have ratified the Covenant).

Under Article 6 of the Covenant, State Parties recognise the right to work in an occupation of choice and must take appropriate steps to safeguard this right. This can include ensuring that there are technical or educational frameworks in place as well as ensuring that the State creates specific policies or legislation to realise such a right.

It is encouraging that one of the main focus’ of the Summit will be expanding the paid workforce, especially to boost the participation of women and young people. However, this aim needs to be backed up with concrete plans on how to make it happen, especially in contexts where young people are not able to access proper education and women still face discrimination in the workforce and spend a lot of time caring for children and elderly relatives.

In line with creating new growth in the workforce, the G20 needs to reform current tax and business practices. Under the ‘growth and development stream’, G20 participants will examine tax and banking reform and has, as one of its aims, already suggested a digital approach to the tax and banking environment by digitising payments.

How would a move towards a digital tax and banking system impact upon the ability of a citizen to participate in business when the barrier to access such infrastructure is high?

Arguably, the Summit needs to consider how a global move to digital services will impact upon the day-to-day business of micro-economies in areas such as Africa or Asia where small and medium enterprises (SMEs) deal in small cash transactions and where access to digital infrastructure is minimal and/or prohibitively expensive.

There should be frank and open discussion about the importance of human rights because global growth does not occur in a vacuum. Yet the G20 will not explicitly address human rights. A desktop review of the G20 website, as well as policy papers and working group outputs arguably illustrates a distinct lack of independent research or discussion around human rights and the effect the role that the G20 can or could play in safeguarding or expanding such rights.

How can human rights be heard and seen at the G20?

One obvious suggestion is that the Summit should consider human rights not as a separate issue to be discussed outside of the Summit, but rather something that should be embedded into each and every discussion concerning future and current policies. This means human rights issues will be reflected within the agendas and working groups co-chaired by States.

Surely greater discussion concerning human rights is expected at such an important global platform.