Many short-statured people will have heard of Professor Tom Shakespeare who is an English sociologist, broadcaster and disability activist. He came to Australia in 2014 to give the keynote talk at the Australian Applied Disability Research conference hosted by National Disability Services. While Carole Lander was in the UK recently she had the opportunity to chat with him and ask if he had a story for SSPA members.

BE PREPARED

In 2008, Tom Shakespeare, who is a professor at the University of East Anglia, was in Geneva for work-related reasons. He was 42 at the time. “I was sitting on a couch watching television and my legs went completely numb,” he says. Tom had to get back to the UK and the National Health Service (NHS) quickly because he knew he needed attention immediately. Tom is not a medical doctor but he’d been studying disability all his life and knew that this can happen to people with achondroplasia.

Tom booked himself onto a flight and friends helped him to get to hospital in London where he had decompression surgery. Like many short-statured people he had always had back pain but now, with his very narrow spinal chord, one of the prolapsed discs had impinged on a nerve and caused the numbness.

After the operation he spent three weeks in recovery and then several years in rehabilitation. Now, he gets around in a wheelchair most of the time. However, having been a very active man prior to the operation, he still walks every day with sticks in order to keep fit. In fact, he admits that he had probably been over-active and that brought on the injury.

“It’s tough because even though short-statured people are encouraged to keep fit, we wear out and the difficulty is knowing when too much is too much,” says Tom, adding that for achondroplasia it’s the spine and for SED it’s the joints.

Adjusting to life in a wheelchair wasn’t too hard for him because he had been married to a wheelchair user so his house was already accessible. But becoming less independent took some getting used to.

Tom still travels a lot – even to Australia – and his life has not changed at all in terms of his activities and professional life. Looking on the bright side he says, “It’s faster to get around in a wheelchair and people stare less at me now. They don’t even notice that I’m short statured so it’s quite liberating.”

Also the issue of whether or not a short-statured person is disabled is sorted because as a wheelchair user he definitely qualifies as a disabled person. He could get a motorised one but has found that a manual chair is easier: he can put it in his car and he can use the public transport and visit friends more easily. His titanium chair weighs 12kg and this compares well with a power chair of 60kg.

Tom gets pain in his feet so he has to take drugs for this. However, he has noticed that all his average height friends of 50-plus years have aches and pains as well so he doesn’t feel so different from them.

The message Tom Shakespeare has for readers of the SSPA newsletter is: “Be aware that this can happen and if it does, I strongly recommend that you get surgery and rehabilitation immediately”. For him, life is still great, he still travels and he’s found that the worst thing that could have happened is still not so bad.