A majority of the Turkish society is unfamiliar with cerebral palsy (CP). And those who know CP mix it up with mental disorders. It is well-known that once every 8 hours a Turkish baby with CP is born. In other words, 4 out of 1000 Turkish babies have CP. In view of this widespread form of handicap, the low public awareness of CP is both thought-provoking and deplorable.

For almost 50 years, Spastic Children’s Foundation of Turkey has been operating in the fields of people with CP. One of our paramount aims is to create awareness of CP in the society. Thus, we want to enable or facilitate the social inclusion of people with CP.

Our foundation has been pioneering the World CP Day in Turkey since 2012. It was in 2015 that’s we took our first giant step towards familiarizing the Turkish people with the World CP Day by launching a ‘campaign for challenge’. The campaign chiefly intended to convey people the impression that they had CP. That’s why we familiarized them with the two most difficult phases of life for CP: Firstly, people with CP cannot jump and stand up right after the jump. Secondly, most of them have difficulties in speaking fluently. We launched our campaign via popular social media platforms such as Twitter, Facebook or Instagram.

The campaign is composed of four phases. All prospective attendees had to:
1. photograph their jump or videotape their jingle before posting them on the above mentioned social media platforms
2. use the text defined for this campaign
3. invite three of their friends to participate in the campaign
4. claim monetary donations from friends who reject to join the campaign through a text message

We integrated bloggers, social media phenomena and stars into the campaign. Within just two weeks, 2000 people reacted to our invitations. Thousands of people heard of the campaign and CP.

In October 2016 we are going to relaunch our campaign. We want to reach a larger target group. We would be glad if nongovernmental organizations abroad active in the field of CP promote, adopt and implement our campaign. This way, we would reach more people.

We are firmly convinced that our efforts will fast-track the concession of CP rights for all people with CP one day!

TURKISH VERSION

Türkiye’de toplum Cerebral Palsy’lileri (CP) tanımıyor. Büyük bir kısmı CP’yi zihinsel engel ile karıştırılıyor. Türkiye’de her 8 saatte bir CP’li bir bebeğin doğduğu biliniyor. Bir başka deyişle Ülkemizde CP’li doğum oranı 4/1000 olarak gerçekleşiyor. Böylesine yaygın bir engel türü olan CP hakkında toplumdaki bilinirlik düzeyi maalesef halen çok düşük.  Türkiye Spastik Çocuklar Vakfı olarak 50 yıla yakın zamandır CP ile yaşayan insanlar  için çalışmalar yürütüyoruz. Büyük önem verdiğimiz amaçlarımızdan  birisi de toplumun bu konuya dikkatini çekmek.  Böylece CP ile yaşayan vatandaşlarımızın sosyal hayata dahil olabilmeleri için bir adım daha atmış olacağız.

Vakıf olarak 2012 yılından beri Dünya CP Günü’nün Türkiye’de öncülüğünü yürütüyoruz. 2015 yılında Dünya Cerebral Palsy Günü’nde toplumun CP farkına varması için bir adım attık ve meydan okuma kampanyası başlattık. Bu kampanyada en önemli amaç; kişilerin kendini Cerebral Palsy’li bir birey gibi hissetmesini sağlamaktı. Bunun için CP’li bireylerin bir çoğunun yaşam boyu yapmakta büyük zorluk yaşadığı 2 eylemi seçtik. Birinci eylem; zıplamak ve zıpladıktan sonra iki ayağının üzerinde sağlamca durabilmekti. İkinci eylemi ise akıcı bir şekilde konuşabilmek olarak belirledik. Bu kampanyayı popüler bir ağ olan sosyal medya araçları (twitter,facebook, instagram) üzerinden yürüttük.

Kampanya dört aşamadan oluşuyordu. Kampanyaya katılmak için;

  1. Kişi zıpladığı fotoğrafını veya tekerleme söylediği videoyu çekecek ve sosyal medyada paylaşacak
  2. Kampanya için belirlenen metni kullanacak
  3. Üç arkadaşını kampanyaya davet edecek
  4. Daveti kabul etmeyen arkadaşlarından ile  SMS ile Vakfımıza bağış yapmasını isteyecek.

Kampanyaya bloggerların, sosyal medya fenomenlerinin, ünlülerin katılmasını sağladık. 2 hafta gibi kısa bir sürede 2.000 kişi bu çağrımıza cevap verdi. Binlerce kişi hem kampanyadan  hem de CP’den haberdar oldu.

Kampanyamızı 2016 yılında Ekim ayında yine sürdüreceğiz. Çok daha geniş bir katılım hedefliyoruz. Kampanyamızın farklı ülkelerde CP için çalışan STK’larca benimsenerek hayata geçirilmesi bizleri çok mutlu edecektir. Böylece  daha büyük bir kitlelere ulaşabileceğiz.

Bu çabalarımız ile bir gün CP’li bireylerin tüm haklarına kavuşacaklarına inanıyoruz!

With some goals, the end is just the beginning. . . .

For 27 years, I wanted to be a parent. As a teenager, after working as a Beaver Scout leader and working a summer job with small children as a teacher’s aide, I knew that raising a child was an experience I wanted, no – I NEEDED, to have.

Along the road, I have had a lot of successes – achieving the highest honour as a Canadian Boy Scout – the Chief Scout Award, being awarded a Governor General’s Medal, a Courage to Come Back Award, and a Terry Fox Humanitarian Award, winning a gold medal/setting a world record at the ’88 Seoul Paralympics, and as a lawyer with a busy estate practice – many community service awards. As I have cerebral palsy, these accolades show a drive to achieve. However, these accomplishments pale when compared to the “big one” – being a parent. . . the process of creating, and then helping to shape a living, loving, contributing member of society.

The problem with parenting (especially as a male), is that unlike other goals, it’s not just a unilateral feat. You need a willing, engaged partner – at least for the initial process. To further complicate things, I had been raised in an environment where everyone had two parents, so the idea of being a single parent – if such was even possible – hadn’t even occurred to me.

As a result, for the 27-year quest, I worked on finding what I THOUGHT was the necessary ingredient – a spouse. Over the years, I dated many lovely, smart, delightful women. Unfortunately, none were the “one”. Finally, at 40, I concluded that the dream of being a parent wasn’t going to be fulfilled.

A son to love

Apparently God had other plans. . . At 42, I became the father to the most wonderful little being I had ever met – Elliot. Our adventure together began about 5 hours after his birth. As I cuddled Elliot, my first words to him were, “Hi! I’m your Daddy, and I’ve been waiting for you for a very, very long time”. Elliot opened his eyes, reached up, wrapped his tiny hand around my thumb, and squeezed it harder than I thought was possible.

While Elliot’s mom had no interest in sharing her life with me, 10 days after his arrival, I started caring for Elliot a couple of days a week. With the help of my mother, I learned to pick up Elliot, change him, bathe him, and feed and nurture him. By age 5, I began caring for him half-time. As our adventure evolved, I realized that as a parent, the child’s arrival is just the beginning. My role is to create a model, to set a positive example and to help my child to become an active, contributing member of society. I try to accomplish this is by showing Elliot that he has one person in the world who is absolutely blindly nutty about him, and no matter what he does, he has no doubt that I still love him with every molecule of my body.

Compassion and contribution

At the same time, my cerebral palsy has had an interesting effect on Elliot’s psyche. Elliot has evolved into an empathetic, kind, considerate little person – illustrated, in part, by the first aid kit he carries in his backpack, and uses to patch-up the “casualties” he passes on the school ground.

From such an early age, Elliot’s desire to ‘contribute’ has been intriguing. . . At eight months, one day as I was changing his diaper, I noticed that he was helping by picking up his little butt to make it easier to slide the diaper under him! Similarly, in response to my challenge in picking him up, at 12 months, he suddenly started lifting his arms each time I went to pick him up – making it easy to slip my arms around him.

At 20 months, I realized he was picking up on my concern for others. We were hanging out one afternoon when I got a call that a client only had a few hours to live – and she needed her will signed NOW. Not having time to find childcare, I bundled Elliot into my car, and raced to my client’s house. When we walked in her front door, Elliot’s usual giggling subsided, and he became very quiet – not frightened or sad – just quiet. When we entered my client’s room, on his own initiative, Elliot marched over to her bed. After stroking her blanket for a minute, he began stroking her arm, and then gave her a grin. Despite her pain, she smiled back, after which Elliot reverted to a typical little boy and traipsed off to inspect the flashing lights of her life support machinery. I’m told that after Elliot’s visit, my client lived three days longer than expected. . .

At age 6, Elliot started insisting that HE be the one who helps me in restaurants. At a breakfast buffet on a trip during Spring Break, I made the grave mistake of asking a server to help me carry glasses of juice to our table. Elliot turned, and with hands on his hips and the sternest look ever, exclaimed: “Daddy, if you need help, you ask ME! Do you understand?”

While parenting – and loving – my child feels good, it also provides a way to affect the community. We need a world that has people in it who have compassion for others. I can’t change the world myself, or even make a small dent, but I believe that by my giving Elliot a loving and caring upbringing, he’ll grow to be loving and supportive of others. This will, in turn, make the community a better place for all. There’s always a chance that Elliot will grow up to be an axe-murderer. But more likely, as I think of the tiny 8-month-old pulling his butt off the ground to assist in diaper changing, I believe this is a being who, as a result of having a parent with cerebral palsy, already understands compassion for others. With the right role model, a child becomes a contributor surprisingly early on in life – a long time before you would believe it possible.

Isn’t this the ultimate dream for a parent?

ABOUT HALLDOR BJARNASON

Halldor is a Barrister and Solicitor at Access Law Group in Vancouver, Canada. He is a former director of Neil Squire Foundation and former National President of Canadian Cerebral Palsy Sports Association. Halldor is also a former executive director and current member at the Cerebral Palsy Association of British Columbia.

In 1988, Halldor was a gold medalist and broke the world record in the cycling event at the Seoul Summer Paralympic Games.

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