“My twin sister and I were born prematurely. I was the weaker out of the two of us…It’s ironic then that I was the one who came out of it unscathed and Jenny went on to live with cerebral palsy.”
Due to the complications in any multiple pregnancy, the risk is higher than single pregnancies, and according to the original article by Ed Green on BBC, “it’s not uncommon for one twin to be disabled and the other not,” citing Paralympic swimmer Sascha Kindred’s twin who doesn’t have a disability and Ashton Kutcher’s twin who has cerebral palsy.
A sibling relationship above all
Ed and his twin sister Jenny shared the closeness often associated with twins compared to other sibling relationships. “The fact we were on different sides of the disability divide, for want of a better phrase, didn’t alter this,” he explains. He and his sister were born 10 weeks early and 10 minutes apart and spend the first few months of their lives in hospitals. “When we eventually went home it was no doubt a great relief to mum and dad,” he shares. “After all, mum only found out she was expecting not one, but two babies, eight hours before we were born.”
Throughout their development and growth, those around them compared and contrasted their development. “I don’t remember when I first really understood what Jenny’s differences meant,” he shares. “But I do remember as a toddler, urging Mum repeatedly: ‘Why can’t Jenny walk?’ The answer always came back the same: ‘We don’t know.'”
Barriers in education for children with disabilities
Ed remembers education being an early obstacle. Although he and his family had high hopes that Jenny would be with his twin in school, “any ideas of Jenny joining me in mainstream education were curtly dismissed,” he shares. The head teacher of the school citing that she could not ask her staff to “cope” with Jenny. Ed was forced to start school without his sister. “It seems extraordinary our parents weren’t given any guidance at this stage,” Ed explains. “They had to find things out for themselves.”Jenny finally began school at a local specialized school.
“I still remember the sign ‘Danger: Physically Handicapped Children’ at the gates. I had never realised my twin was dangerous.”
Despite the fact that Ed and Jenny had identical knitted jumpers, “people saw us as different,” he remembers. When Ed made it to secondary school, he started getting homework. When Jenny started begging her teachers for homework, their mom received an angry call from school, who accused their mother of “pushing Jenny too far”.
Fear for the future
Ed remembers beginning to worry about Jenny’s future at age 16. Thankfully, Jenny came into her own through an independent living organization, which she later went on to chair.
“I’d heard many stories about disabled people living with their aging parents until middle age and then getting dispatched to an institution, their only respite throughout adult life being visits to day centres.”
“In retrospect, I think it gave Jenny a rich experience,” he shares, but at the time, the protective brother was concerned about the members being open to exploitation. His sister had her savings cleared out by one fraudulent volunteer. “Jenny’s poor grip on her finances gave me sleepless nights and I ended up insisting on seeing her bank statements,” he recalls. “All those ordinary brother/sister quibbles pale in comparison to the fights in our early 20s about how much she needed help or should be left to get on with things.”
In a tragic twist of fate, Jenny passed away a few weeks before their 28th birthday in an accidental cooking fire. “All these years on, I have bitter-sweet memories of making her collapse into giggles, her overactive reflexes making her spill her drink all over the place as she both laughed and feigned annoyance at the same time.” Despite the fact that Ed has had to continue his life without his sister, “Jenny and her different needs still touch my daily life in subtle little ways.” Whether that’s Ed’s instinctive reflex to find accessible travel routes or seeing other things that would or wouldn’t be difficult for someone with his sister’s mobility.
“There are things only twins can share, such as our quirky sense of humour and memories of childhood. But it’s strange that for us her cerebral palsy, and my lack of it, was something we shared too.”
You can also listen to Ed’s story on the Ouch disability podcast.
Share this post with parents of twins where one has a disability, to share what that relationship is like from an adult perspective.