Warwick Davis has long been an advocate for Jeans for Genes Days, frequently speaking about his own condition to raise awareness and quash the misconceptions that still surround genetic disorders. Warwick was born with a rare genetic condition called spondyloepiphyseal dysplasia (SED) that affects bone growth in the spine, arms and legs and affects approximately one in every 100,000 babies.

As a child, doctors told his parents he wouldn’t survive his teenage years and would be confined to a wheelchair.

Warwick defied the odds to lead what he considers a very ‘normal’ life. Through Jeans for Genes Day, Warwick hopes that others will see that genetic disorders are actually a very real part of normal life. “We are more accepting as a society now toward difference in general and the media have helped a lot with that,” says Warwick. “The media is a great ally in promoting genetic disorders and showing they are no longer taboo.”

 

Have the conversation

 

Having said that, there’s still some way to go. Like anyone with a visible disorder Warwick is still subjected to the staring, the pointing and those awkward moments when an embarrassed parent scolds their inquisitive child. “Young children are often the most curious,” says Warwick. “Instead of dragging them off, take the time to talk to people. I’d much rather have a conversation and explain my condition. That will then be an experience that will stay with them, rather than a negative experience of a parent telling them off.”

In many respects, Warwick’s upbeat attitude belies a lot of the physical pain he suffers on a daily basis.

“When people see me they see a short person, but that’s just the tip of the iceberg,” he confides. “There are a lot more complications and pain going on that people don’t see.”

But Warwick is not after sympathy, he’s adamant that his condition has made him a stronger, more compassionate, more determined and an all round better person. “If you can find a positive, it can become like a super power,” he says. Warwick hopes that more people will make it their business to find out about genetic disorders, so as a society we can see the real people and not just their differences. “I’m not a personality and a body, I’m one and the same,” concludes Warwick. “And given the chance, I wouldn’t change a thing.”

 

DSAuk is a vibrant organisation which strives to promote and develop opportunities for people with dwarfism to particiapte in sport and recreation on an equal level.


Website is www.dsauk.org
Facebook page is www.facebook.com/DSAUK
Twitter page is @dwarfsportDSAuk
Video: https://www.youtube.com/watch?v=PxJH7r5W9LI