A world of difference

ARTICLE published in LINK DISABILITY MAGAZINE (October 2014)

Angelo Olmi was born with achondroplasia, the most common condition of dwarfism. He works in the organic section of the Queen Victoria Market, Melbourne, where he has no trouble reaching the counter or till because he has undergone surgery to extend the length of his limbs.

Olmi (27 years of age) is now 1.54 metres tall whereas the World Health Organisation’s definition of a dwarf is someone who will not grow taller than 1.45 metres. He says: ‘When I was 14, I decided I wanted to have the surgery for a better quality of life and to make things easier for me – like driving a car, having the possibility to do almost any job.’

Born and raised in Italy, his average-size parents brought him up to do all the things other kids do. It was a brave decision to undergo the surgery because, in all, it took five years to lengthen his legs and arms. His parents did not have to pay for any of it, thanks to the Italian health system.

Opinions differ about this surgery. Dwarfism support group, Little People of America (LPA), have run a petition denouncing the procedure as painful and largely cosmetic. This came in response to a 20-year-old American woman, Chandler Crewe, who documented her own limb-lengthening surgery on social media over the past four years. Her family’s private health insurance covered the surgery costs.

At Baltimore’s Sinai Hospital, where Crewe was treated, doctors expressed the opinion that while limb lengthening has cosmetic benefits, the primary reason for the surgery is for improved functionality. The way it works is that the patients’ bones in the arms and legs are surgically broken, then increasingly separated over a period of months. The body generates new bone to fill the gap, thus making the bones longer. Olmi and Crewe took a lot of medication to overcome the pain but they consider it was worthwhile.

Here in Australia, a team of geneticists and social workers are on hand at the Royal Children’s Hospital in Melbourne to advise and treat people born with dwarfism. Departmental head Prof Ravi SavarirayanMD (skeletal dysplasia specialist) says, ‘We don’t do the surgery in Australia as we feel that the complications outweigh the benefits in many dwarfism conditions.’

Nevertheless, it is a topic of interest to Australians. Melbourne-born Meredith Young (35) who has achondroplasia, recalls that when she was in her teens, her mother talked to her about the possibility of limb lengthening. Young’s response was: ‘I will still be a dwarf though. Wouldn’t I then be more disproportionate than what I already am?’ Also, she was involved in competitive sport and would not have agreed to miss out on that for the duration of the operations. Young has since competed in the World Dwarf Games of 2009 and 2013. Last year the Australian team captain was Sam Millard (26, also from Melbourne) who has the condition SED congenita. On the topic of limb lengthening he says, ‘I think all short-statured people want to be taller at some stage. I know I did. However, as I have gotten older my views have changed. On the odd occasion I do think it would be nice to be able to reach the top shelf in the supermarket. But for the most part I have grown to be comfortable in my own skin, which is a challenge for everyone regardless of height.’

As well as the debate over cosmetic versus functional, some people advocate that ‘disability is beautiful’. At the recent LPA convention Rebecca Cokley, who has been a national policy adviser on disabilities for the White House, encouraged delegates to accept that ‘disability is part of life’s infinite diversity’. She stressed that with disability legislation in place, it is easier for short-statured people to participate more fully in life these days.

However, there will always be some who would appreciate a few extra centimetres to their height, empathising with Crewe and Olmi who both say, ‘I did this to make a better life for myself.’

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For advice in Australia on this topic contact Short Statured People of Australia (SSPA)

Carole Lander’s book Little People Big Lives is available on my BOOK SALES page or enquire about it by emailing info@checkword.com.au