The power of networking
Like almost 500 others in the UK, I am one of the lucky thalidomide survivors - lucky in the sense that the vast majority of foetuses damaged by the drug either died in the womb or just after birth.
Our story is well-known and I won’t repeat it here. One of the remarkable things about thalidomide though is its ability to punch above its weight in terms of attracting the attention of the media. That remains the case today. But while we were growing up we also attracted the attention of the medical profession - specialist clinics were opened and some of us were forced to wear the rather cumbersome prosthetics of the 1960s and 70s.
As adults, the medical profession seemed quickly to lose interest but the complications of living with our impairments seemed to multiply: using our bodies to do ordinary things in extraordinary ways caused severe wear and tear on muscles and joints - in my case, a prolapsed disc when I was in my mid-thirties which made me rethink my entire approach to my disabilities.
Together with Swedish thalidomide survivors, we cooked up a plan to address the health inequalities that both sets of thalidomiders were experiencing. The solution was EDRIC (European Dysmelia Reference Information Centre) - an umbrella body not just for thalidomide but for all forms of congenital limb difference. That way, we would attract the critical mass necessary to gain the attention of policy makers. That way, peer networks could be formed for self-help. That way, the remaining specialists could be brought together in their own network which could interact with our peer network which we call DysNet.
Six years down the line and EDRIC has 31 member organisations in 20 countries, including Limbs 4 Life. DysNet is all over social media and the internet. We reckon that we represent upwards of 6,000 people living with limb difference. We’re about to host a conference to bring together those living with the condition with experts in Stockholm in October this year. We’re also about to launch an information portal for parents who discover that they have or are about to have a limb different child.
As the cohort of thalidomide survivors advance through middle age, it’s great to be able to pass our learning onto young people with limb difference and to draw on their youthful energy and enthusiasm to carry on the good work. Together, we are stronger.
Limbs 4 Life is proud to be an international member of DysNet. To find out more about DysNet and join their network visit www.dysnet.org
The power of networking by Geoff Adams-Spink (Chairperson of DysNet)