ATHENS – Daphne Economou, president and founding member of Cerebral Palsy Greece/Open Door (CPG), and a mother of a child with cerebral palsy, spoke with The National Herald about the organization, its mission and its efforts.
She said: “Cerebral Palsy Greece/Open Door was founded 50 years ago to address a pressing need. If we are to consider the attitude that was prevalent at that time, we will see that for most people a ‘physically handicapped child’ was a child with polio. But as the polio vaccine, thankfully, reduced the number of children with this disease, a new group of physically impaired children, different to what people were accustomed to, started to hesitantly appear. The rehabilitation centers of the time were not prepared to accept them… nobody really knew what they were suffering from.”
Economou and her team have performed remarkable work in aid of children that were “mostly hidden in back rooms, from the shame and despair that their families felt.”
Challenging the ignorance and fear of that time, a small group of parents, together with a few enlightened members of the medical profession and some outstanding members of Athenian society, founded Cerebral Palsy Greece/Open Door in 1972, in three rented rooms in an Athens neighborhood. Their simple purpose was to offer the person with cerebral palsy a “place in the sun.”
As always, the first step had been taken by the volunteer sector. Economou described some of the major steps in this long journey:
“All the work of Cerebral Palsy Greece/Open Door is based on our belief that people with cerebral palsy possess vast potential, if they are granted the opportunity to spread their wings.
“We never isolated ourselves or the people in our care. On the contrary we are determined to break down the barriers caused by prejudice and to build strong bridges of communication, in order to ensure that people with cerebral palsy will be naturally included in the society of their fellow human-beings.”
She continued: “From the very start, we discovered that children with disabilities never played, like other children, so we set up the first playgroups for children with cerebral palsy, in Greece.
“Next, we realized that children with cerebral palsy were not considered capable of advancing to secondary and higher education. So, to prove how erroneous this notion was, we set up the first Gymnasium and Lyceum.
“It was also soon evident that nobody else wanted to become involved with children that presented such complex impediments, so we focused on the more seriously impaired, and realizing that the notion of the ‘handicapped child’ still persisted, we set up the first educational and prevocational programs for adults in Greece!”
“One of our strongest beliefs is that culture, education, and art are defining factors in the life of every human being, so we have focused on these factors with miraculous results, always combining people with and without disabilities in all our artistic activities.
“It was also evident that without devoted and highly specialized staff, we cannot offer those in our care, the services that they deserve, so in 50 years we have organized 64 international conferences, with world-renowned speakers, seminars and training courses for staff of all disciplines,” Economou said.
More information is available online: https://www.eps-ath.gr/en/.
She shared highlights: “In 2001, we opened the doors of our Open-Door Centre of Education and Rehabilitation and a new period of rapid expansion of new programs and services began. In 2005, we set up a model primary school, on our premises, funded by the Ministry of Education. In 2006, we opened the first Respite Home for temporary residential care and in 2012, the first Residential Home for adults whose family circumstances prevent their residence at home.”
Economou continued: “Over the years we have been honored for our work, by the Academy of Athens and the President of the Hellenic Republic, and we have received numerous Greek and foreign awards. But the instances that will always remain indelibly engraved on our memory are the time when we took our children in their wheelchairs to the top of the citadel of Mycenae, when our drama group won the first prize at an international festival in Portugal, when our singers, dancers and actors performed on the stage of the Athens Concert Hall, alongside professional artists, and when we sang the Christos Anesti in the Agia Sophia Cathedral in Constantinople, under the nose of the Turkish guards! These are the moments that justify every effort and help us to believe in a brave, new world that we can all share as equals.”
When asked how difficult it is for a family in Greece to care for a child with a disability, Economou said: “Very difficult, even though most families in Greece care for their disabled children with tenderness and devotion and strive to provide them with the best possible life. They are proud of them, and they do not hide them away anymore. But conditions are very hard for the Greek family with a disabled member and have grown even harder in the last years. The results of a recent survey run by the Open-Door Centre were extremely worrying, as they indicated that the economic crisis and the pandemic have caused serious financial, social, and psychological problems in over 75% of our families.
“Unfortunately, the Welfare State in Greece continues to be unpredictable and bedeviled by its own bureaucracy, and serious shortcomings persist in the services that the State should be providing to families with disabled members. During the lockdown, aged parents with profoundly disabled children found themselves totally isolated at home, without any public assistance whatsoever. We are relieved that the Government has announced a new initiative around the question of ‘home help’ but other crucial matters remain unresolved. Finally, the weight of care is on the shoulders of the private sector, that always stands on the front line.”
“A mother wrote: ‘When I brought my child to the Open-Door Centre, I felt that a great burden had been lifted from my shoulders, and that I had found true friends.’”
When asked to compare the care of children with a disability in Greece to services in other countries, Economou noted that “it is always hard to compare, because so much depends on the human factor, and the answer to the question: ‘Who will help me in my hour of need?’ is sometimes hard to answer even in the best of circumstances.”
She continued, “I can only judge from personal experience. The UK has a National Health Service, that still works moderately well, and because many services are provided by volunteers, it retains a human face. In Greece, with better organization, the voluntary sector could be put to good use, because the volition exists. In Scandinavia, the state runs the show, but the tax-paying citizen is entitled to a full range of services on demand, a situation that certainly does not apply to the tax-paying Greek. In Greece, however I felt that there is a greater degree of compassion toward a person with disability, than I experienced in Germany. The most beautiful relationship that I have ever witnessed between a doctor and a child, was in the Republic of Ireland. So, it all depends, but the truth remains that it is not an easy task to raise a child with disability in Greece. And considering that Athens is still an inaccessible city for the disabled, what more can one say?”
When asked who supports this vital work, Economou said: “Since the start of our operation our most important and regular assistance has always come from members of society, who recognizing the range and quality of our work, have supported us actively with their confidence over the years. Individuals, organizations, and charitable foundations honor us with their generosity, but we are living in extremely difficult times. All our services are offered totally free of charge, and with 240 children and adults on our daily programs and 110 members of staff, the preservation and development of our work demands a constant and often extremely difficult fund-raising effort.”
She continued: “Unfortunately, the State has still not fully recognized how much the non-governmental sector is offering in the field of social welfare and child protection, and to what degree we are compensating for State deficiencies by providing a high standard of service, at lower cost. We should not be begging for government assistance, and we should receive greater acknowledgement for our contribution.
“I would like to particularly mention the Stavros Niarchos Foundation (SNF), as an example of good judgement and true solidarity,” Economou said. “Without the assistance of the SNF many non-profit organizations in the welfare sector would have closed in Greece after the financial crisis in 2008. The SNF showed the way to other charitable foundations, that have stood us in good stead in these last years, by emphasizing that what we all need is assistance in running our essential services and meeting our obligations. We do not need 100 computers nor 50 wheelchairs!”
Of her vision for the future, Economou said: “Whatever we do, we do for love for the wonderful people in our care, from whom we have so much to learn. Our first and foremost wish is that no more children with cerebral palsy should be born. However, despite considerable scientific progress, new challenges are constantly arising, and the number of children with cerebral palsy has not decreased as much as we had hoped.”
“Our vision is always to offer people with disabilities equal opportunities to develop their skills and talents so as claim their rightful place in society, and we are determined to keep our doors open, as our hearts are always open to new people and new ideas, she said. “We will never give up or lose heart, however many obstacles stand in our way, and we will continue on a steady, upward path, as long as there is even one child with cerebral palsy in need of help.”
“Our children’s smiles, their parents’ courage, the devotion of our staff and the love of our friends are our greatest strength and the source of all our faith and determination to do even better,” Economou said.
Of the ties with the Greek-American community, Economou said: “We retain close bonds with similar institutions as ours, all over the world, and we have contributed decisively to international conferences, as invited speakers. We are the organizational member for Greece of the International Cerebral Palsy Society (ICPS) and a member of the European Association of Service Providers for Persons with Disabilities (EASPD).”
“In order to reach out to the Greek-American community, whom we esteem deeply for their unceasing support of Greece in times of need, we have founded the nonprofit organization: Porta Open Door USA-Inc.”
For further information and to make a tax exempt donation, please visit: https://www.eps-ath.gr/en/who-we-are/open-door-usa/.
“Our hope is to build up a closer contact and to make our work more widely known in the U.S. I warmly thank The National Herald for giving me this opportunity to speak from my heart about the work we are trying to accomplish at the Open-Door Centre in Athens, and I hope that my words will bring us new friends and supporters. We have never needed you more,” Economou concluded.