Disabled rights activist living life to the full.
The American actor Christopher Reeve was famed for two reasons: his award-winning portrayal of comic book superhero Superman and the fact that, before his death in 2004, he was probably the most prominent person on the planet in a wheelchair. Whenever I see him in a film or in a documentary, I am reminded of a woman I first interviewed some 18 years ago, Toula Karatzia, whose parting words were "I'm still me", taking her quote from Reeve's best-selling autobiography, Still Me.
Karatzia and Reeve had much in common. They both had accidents that rendered them tetraplegic -- paralysed in the torso and all four limbs -- yet went on to live full lives, campaigning and working for others in a similar position. So, as I approach Toula's flat in Strovolos, Nicosia, on a cold and miserable day in 2019, I do so with a mixture of excitement and trepidation -- happy to catch up after so many years, but worried that she may not still be the brave and tenacious woman I remember.
My fears are alleviated as soon as I see her. The years seem to have been kinder to Toula than they have been to me. Both in our fifties, I have piled on a kilo for every year that has passed since our last meeting, while Toula has remained slim and trim. I am greying at the temples, while Toula's hair is a darkish brown, courtesy, she admits, to a hairdresser. Her eyes still sparkle when she talks about what is important to her and her determination is clear.
In 1986, Toula was a 20-year old aspiring model and the front-seat passenger in a car being driven by her former boyfriend. I use this term loosely. Instead, imagine two cars racing against each other in downtown Nicosia with little room for manoeuvre. One car swerves to avoid bumping the other, and hits a telegraph pole head on. No-one is killed, but Toula breaks her neck instantly.
"If I had not been wearing a seatbelt, I would have died," she said previously.
Despite the similarities of their stories, there is one very obvious difference between Toula and Reeve: she is a woman, and more remarkably, she was the first Cypriot tetraplegic woman to have a baby, and remains, to this day, the only Cypriot tetraplegic woman to have given birth naturally, some 26 years ago. In fact, since I last spoke to Toula, only two other paralysed Cypriot women have gone on to have children, one tetraplegic and one paraplegic (paralysed from the waist down), but both by elective Caesarean section.
Anyone who has ever looked after a child will marvel that these women have chosen to be mothers. For those who are paraplegic, Toula believes it is a little easier because they can use their arms and hands to feed, wash and change the baby, but for a tetraplegic it is a lot harder because they have to rely on hired help or family members to do much of the work, as Toula did. So what could she do for her baby, Kyriakos? "I could only rest him in my lap," she recalls. She was also always the one that made the important decisions, set boundaries, encouraged him to do the right thing and loved him.
As he grew, and while each physical action was carried out by another person, Toula always made sure she told Kyriakos she wanted to do all these things for him but could not due to her disabilities. "The psychologist told me that it is was very important to do this," she explains.
Despite the difficulties involved, Toula now says her only regret in life is that she did not have another baby. "At that time, I didn't want to have another child. It was very difficult for me to watch someone else taking care of my baby. It bothered me a lot. But after a few years, I realised that this was a big mistake," she admits.
As Kyriakos grew older, Toula's ability to have more input increased, helping him with his school work and encouraging him with his extra-curricular activities such as learning to play the piano. "He stopped when he was fourteen though... when he got a girlfriend," laughs Toula.
Though she admits that managing his teenage years was quite difficult, after he completed his national service she saw a change in him and now he is a qualified lawyer and living happily with another girlfriend. Is she looking forward to having grandchildren? "Yes, I love kids," she says enthusiastically.
Barely an adult herself when she was operated on in the Nicosia General Hospital to stabilise her condition after that fateful accident, she was eventually transferred to Stoke Mandeville Hospital in the UK, a centre that specialises in treating spinal cord injuries, where she underwent a further operation to fuse her neck bones together and where she would remain for seven months for extensive physiotherapy and rehabilitation. It was also where she was finally told the truth by pioneering consultant, Isaac Nuseibeh.
"Toula, you will never walk again", he said, explaining that nothing could be done to repair the damaged spinal cord.
This act of blatant honesty signalled the start of a special friendship between the doctor and his patient and Toula is still touch with him, though he is now in his eighties and retired. Her on-going care was taken over by another expert from Stoke Mandeville, who now comes to Cyprus twice a year to see her and other patients in the spinal cord unit at the Nicosia General.
"This is very good because it means we do not have to travel to England for a check-up or for some special treatment," says Toula, who is also quick to praise the staff and facilities now available in the unit.
Although Toula believes her condition has remained pretty much the same since we last spoke, I detect some subtle improvement, probably because she now has the use of a mobile phone and an iPad (which rest in her lap) and which she can touch with the sides of her wrists and fingers on her left hand, allowing her to answer calls, send emails and make use of the internet. The iPad's on screen keyboard has been enlarged which facilitates in this regard. "Technology is very important to disabled people," she says, explaining how applications like Skype and Viber help with their communication and socialisation.
Technology would also allow her to follow international developments in spinal cord injury research, perhaps leading her to hope for a 'cure' one day? She shakes her head emphatically. "No, I have stopped. I have been in a wheelchair for 32 years. It would be impossible for me. I have a high injury -- C4. Another half centimetre up, and I would not be able to breathe naturally and so I am not going to take the risk and open up my neck again".
Though confined to a wheelchair for more than half her life, Toula has certainly not rested on her laurels. In the early years she helped the Radiomarathon Foundation (a non-governmental voluntary organisation) to raise money for children with disabilities and she was part of a citizen's initiative for road safety, visiting schools and army camps and warning youngsters about the potential consequences of poor driving habits, including driving too fast. For the last ten years, she has been Vice President of the Organisation for Paraplegics in Cyprus (Opak) and still assists with road safety campaigns. "I now believe that when we go into high schools and the army it is probably too late. We should start in kindergardens and junior schools".
Toula is also impressed by some of the island's bus companies which have purchased vehicles that are capable of handling wheelchairs and who have called upon Toula and her organisation to help train their drivers on how to deal with wheelchair passengers. Furthermore, she cites some London cab style taxis on the island which can also handle wheelchair users. Regarding transport and the general treatment of disabled persons in Cyprus she believes that, although there is room for improvement, "we are in a good way".
With funding from the EU, and the support of the ministry of labour, Opak has also been training the unemployed to provide supportive care services to the disabled, offering direct employment after evaluation. So far, 59 trainees have passed through Opak's course, and 35 of these, in the Nicosia, Larnaca and Famagusta regions, are under Toula's supervision.
"I am not a person that likes to sit in the house," states Toula, as I am reminded of an occasion many years ago when I saw her on her own negotiating her wheelchair up the steeply inclined dual carriageway on Athalassa Avenue. In fact, she invites me to have coffee at Gloria Jeans, which is half a kilometre from her flat, assuring me she can get there on her own, using the side of her left wrist to control a touch-sensitive joystick on her wheelchair.
Toula's efforts over the years to knock let her injury hold her back have been rightly acknowledged and rewarded. In May 1992 she went to the White House where she met Vice-President Al Gore and received a special commendation. The Victory Award, sponsored by the National Rehabilitation Hospital in Washington DC, was in recognition of her "exceptional depth of inner strength, tenacity of purpose, integrity of effort, and courage in the face of adversity" and was signed by Cyprus' late President Glafcos Clerides. Other awards followed, including a Woman of the Year Award in 2012 from the magazine Madame Figaro, and a Women's Day Award in 2013 from the Municipality of Engomi. It was at this latter event that she was approached by local author, Yiola Damianou-Papadopoulou to write a fictional book based on her life story. Entitled Life is Love, the paperback was published in 2014 and is still available to purchase online.
"I always wanted my story to be in a book, but I am not a good writer," laughs Toula, grateful that someone else took up the mantle.
And what of another important character in her story, Kyriakos' father, Tassos, who she met three years after her accident? "He was my rock for so many years," she says, but at this point becomes despondent, explaining that he is now dealing with his own health issues.
Keen not to end the interview on a sad note, I ask Toula if she has time to do anything else apart from all of her crusading work and I am surprised to discover that she also helps foreign children with their Greek homework and, from time to time, works as a Tupperware lady! "I'm very happy with what I did and what I am still doing with my life," she concludes.
For further information on Opak, or to make a donation, visit www.opak.org.cy
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|Publication:||Cyprus Mail (Cyprus)|
|Date:||Jan 29, 2019|
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