By Mokgadi Maponya
During the month of October Equal Citizens Of Short Stature – Southern Africa (ECOSS-SA) linked with Rare Diseases SA to give a voice to people of short stature and to advocate for them to take up their rightful place as equal citizens in society.
ECOSS-SA is a non-profit organisation founded by Melanie Lubbe (53), to provide and promote a range of comprehensive human rights and social developmental support services for the benefit of persons of short stature.
Lubbe is the secretariat of the South African Disability Alliance (SADA) and is involved in the disability sector,especially on a legislative level.
“I realised that there was absolutely no representation for persons of short stature. We face unique challenges such as ATMs and parking ticket machines, shopping trolleys [that] are so high that I can’t see over the handle bar and walking long distances is quite a challenge for me,” Lubbe told ThisAbility.
“This is why we have linked with Rare Diseases SA (a social media page on Facebook) to address challenges with the hope of establishing a working relationship with medical research institutions as well as to help raise awareness on persons of short stature,” she added.
ECOSS-SA is currently establishing its first database of persons of short stature as well as to try to identify different types of dwarfism in the country.
They look up to Little People of America which receives help from government, is active with support groups all over the USA, with a medical referral system to specialists.
Lubbe says there are a few organisations in Africa butthey have very limited resources and still fightstigmatisation and discrimination.
Dr Karen Fieggen, a subspecialist medical geneticistand a professor at the University of Cape Town defines dwarfism as a genetic condition that influences the growth of bones (known as skeletal dysplasias) but may sometimes be the result of other medical disorders such as hormone deficiencies.
“Most persons of short stature in South Africa are not diagnosed because it is most likely a combination oflack of access to specialist resources for diagnosing rare or unusual conditions that not every health care professional will be familiar with and stigma may play some role in individuals and families choosing not to seek answers,” Fieggen says.
Leah Kay (14), a Grade 7 pupil from Cape Town, says that when she was born there was no support system in place for people with dwarfism. Her mom would source information from the internet where she found an onlinesupport group for parents and became virtual friends with many of them. This inspired her to start a blog that would later migrate to a Facebook page called Raising Leah.
Kay says “My mom started sharing things about my life, and milestones achieved. She shared about the ups and downs of being a parent of a child with dwarfism and thepage became a huge positive space for new parents of little people.
There is a lack of education around the acceptance of disabilities in our country. We are still not inclusive enough.”
She adds that, “I have had people pull out phones to take pictures of me while I’m at the shopping mall and I have had to learn to defend myself from these situations, but why do I have to do this? It’s because people are ignorant and because disabilities are so sheltered [that] we still fight the battle to be accepted.”
For more information on ECOSS-SA, send an email to info.ecoss.sa@gmail.com
