World Cerebral Palsy Day: Christine Staple-Ebanks Says Quality of Life is Key


Jamaican Christine Staple-Ebanks has much to say for World Cerebral Palsy Day. Christine advocates for greater awareness of the issues affecting those living with CP and their families. Christine founded the Nathan Ebanks Foundation in 2007; it is named in honour of her own son, who has CP. We need to build more support for children and adults. It can be done, but there is a lot more that could be done. 

Oh, and that reminds me: The Digicel 5K Run for Special Needs takes place on Saturday, October 7 at 7:00 p.m. in downtown Kingston. I hope you will be attending. If not, please support in any way you can!  And please, one day soon, go visit the S.T.E.P. Centre. It ‘s magic!  HERE IS THE NATHAN EBANKS FOUNDATION PRESS RELEASE…

World Cerebral Palsy Day is a movement of people with cerebral palsy (CP) and their families, and the organisations that support them, in more than 60 countries.

Its vision is to ensure that children and adults with CP have the same rights, access and opportunities as anyone else in our society.

Christine Staple-Ebanks, founder and head of advocacy of the Nathan Ebanks Foundation explains: “Cerebral palsy is the most common physical disability in childhood and is also one of the least understood. There are over 17 million people living with CP worldwide, and 350 million family, friends and supporters who care about them.”

In Jamaica, the numbers of persons with and impacted by cerebral palsy is significant. We talk to people with CP, their families and organisations supporting them and find incredibly frustrating similarities. The same issues keep coming up again and again.”

“One of those issues is what we call quality of life. It’s about helping people thrive, and adults  find enjoyment and fulfillment in life. It is about providing the supports necessary to give children with CP access to education and developmental opportunities.”

“Cerebral Palsy (CP) is not very visible in Jamaica as a disability. When we do hear of success stories of individuals and organisations who are creating positive change in their communities, these are the exceptions rather than the norm. We need to change this. Our mission at the Nathan Ebanks Foundation is to help build the voice of advocacy to highlight the issues, unearth the stories and encourage the wider Jamaican community to take action.”

10 Things I Didn’t Know About Cerebral Palsy

Quality of Life

Access to medical and therapeutic care available is essential to helping people with CP live the best possible life. But these services and supports are not readily available in Jamaica, and for the few specialists who are here they will tell you that the take up of their services due to a number of reasons including low awareness and some families not having the resources to pay for these services.

CP is not just a day-by-day reality it has a moment-by-moment impact in people’s lives—not just in the lives of those with CP, but among families, caregivers, and educators as well who care for them.

Access to tools and products

There are, of course, many specific products—including non-spill cups, the ability to type on a computer using an eye scanner, or an electric or speciality wheelchair —that can have a powerful effect on the quality of life of a child or adult living with CP. Businesses have a role to play in creating access to these essential products, but they will not be able to do so without key partnerships with persons with CP and organizations and groups serving this population.

Access to information

Where can a parent go to get advice about the best way to care for their child? Where can a traveller find information about the most accessible tourist attractions? Where can a man with CP learn to become employed? Where can a teenager get access to the film, Margarita with a Straw or Enter the Faun, or My Left Foot to find the inspiration to live their own life? Where can a woman get advice about how to become independent? The sea of needs, and the questions that arise from those needs, are vast. But it almost assured that they have been asked and answered by others in the global community. It is time for Jamaica to get caught up.

Access to support

Sometimes an ‘advanced’ society has become that way at the expense of the kind of familial and community networks that have historically supported individuals and families. In other societies, there are no support networks because of the stigma surrounding disability or the inability of people to connect across physical and digital divides. We have the chance to build supportive communities here in Jamaica, that can help improve the social, economic and personal quality of life for people with CP. We must work together to accomplish this.

Since 2007, the Nathan Ebanks Foundation (The NEF) has worked to represent the issues facing children with CP in various fora including media, conferences, workshops and special events. We have worked to build the capacities of parents, teachers and caregiver to better support the holistic development of the children. We partnered with Multi Agency International Training and Supports, the Rangoonwala Foundation and Child Development Agency to create and established several resources including: the first Rehabilitation Aide training model which trains parents and caregivers how to support children in their daily care activities to develop functional self-help skills. In 2017, in partnership with the Child Development Agency and Supreme Ventures Foundation, we hosted the inaugural Annual Children’s Expo and Special Needs Resource Fair (May) to support parents in learning what resources are available to their children. In May 2017, we also published and launched the first Children with Special Needs Resource Handbook for Families and Professionals.

It is time to close the gap between the everyday circumstance and the very real potential of those living with CP. We invite our media partners to Join with us in spreading awareness. Join us in putting Jamaica on the map!

Contact: Christine Staple-Ebanks, Founder and Head of Advocacy, Nathan Ebanks Foundation  Email: cstapleebanks@nefjamaica.org   Tel: (876) 857 4425

Mailing Address: Unit # 1, 94J Old Hope Road, Kingston 6

Christine Staple-Ebanks reads from her book “Raising Nathan” while a friend listens. (My photo)

 

 


6 thoughts on “World Cerebral Palsy Day: Christine Staple-Ebanks Says Quality of Life is Key

  1. Can’t agree more that CP is a common physical disability but the least understood. Also, that unlike day-to-day it has a moment to moment impact on lives. Even though progress is slow, but I am happy that disabilities are now being thought of in a serious way. With hope, that there is always light at the end of the tunnel…..

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    1. It does seem to be little understood, and so much stigma and misconception about it. I remember growing up in England they used this horrible word “spastic,” which also meant someone stupid and laughable. It seems awful to think of it and of course that wouldn’t happen now. So progress has been made I think, but people are taking the whole issue of disabilities more seriously now, I agree. In fact, at the youth climate change conference I attended this week, Caribbean youth delegates insisted that people with disabilities should be included in the text of their final declaration. Yes… there is always hope!

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      1. So true….more often than not,stigma is as a result of lack of or insufficient knowledge about a particular subject…the more people are made aware the better it will be for all involved…Knowledge really is power.

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