Sunday, October 11, 2020

Launch Research into the lifestyles of Adults with cerebral palsy – Farida Bedwei

 Ms Farida Bedwei, a Software Engineer, living with cerebral palsy, has called on researchers to start researching into the lifestyles of adults with cerebral palsy.
 


She said: “There is no research on adults with cerebral palsy, all the research I have seen concerns children with cerebral palsy, however, the children grow to be adults and there is no information to guide their lives.”

Cerebral palsy is a neurological condition that affects movement and sometimes speech of a person

Ms Bedwei said this at a forum on Saturday, organized by Mr George Best Akuffo Baah, a person living with cerebral palsy to celebrate World Cerebral Palsy day on the theme: “Make Your Mark”.

Ms Bedwei who is also an entrepreneur, also urged the government to pursue the implementation of Ghana’s Inclusive Education Policy seriously

She said: “If government pursued inclusive education the way they pursued the Free SHS programme we would have made a headway with inclusive education.”

Many children with cerebral palsy in Ghana are refused admission into public and private schools alike, some parents are forced to lock up children with cerebral palsy in rooms to enable them go out and earn an income.

Ms Bedwei said, “I was able to go to a government school in Korle-Gonno, 30 years ago when there was no inclusive education policy, all we need to do is to make the environment conducive for children with cerebral palsy to learn

Mrs Hannah Awadzi, Executive Director of the Special Mothers Project, an advocacy and awareness creation programme on cerebral palsy issues, said her concern was for the well-being of parents especially mothers of children with cerebral palsy.

She said “If the parents are not well, mentally, the child cannot be well, we need to support families to raise children to become the Farida’s of our time.”

Mrs Awadzi called on government to explore policies that will create a care-giver programme for families to help give especially mothers some respite while enhancing their lives.

Ms Otiko Djaba, Founder of Henry Djaba Foundation, a disability focused organization, who chaired the forum announced that the Henry Djaba Foundation had opened its doors to children with cerebral palsy in Ghana to have free assessment of their condition.

“We have a team of professionals working with us who will assess your child and point you to the right places for help,” she said calling on families nurturing children with cerebral palsy to get in touch with her organization for support.

She also urged the patrons of the forum to endeavor to adopt a child with cerebral palsy and try to make a mark in their lives.

MR Nii Anyetei Akogyeram, Ms Adwoa Dapaah Amponsah and Mr George Best Akuffo Baah, all persons living with cerebral palsy shared insights into their lives, highlighting their abilities.

Ms Yvonne Ewurama Osei, a physiotherapist, also spoke about the importance of doing regular physiotherapy for a person with cerebral palsy

Monday, October 5, 2020

World CP Day – Make your Mark, Embrace a child with Cerebral palsy

 Ghana will on Tuesday, 6th October, 2020 join the world to celebrate World CP Day. Persons with cerebral palsy and their families will take to social media to create awareness about cerebral palsy.

World Cerebral Palsy Day is a movement of people with Cerebral Palsy and their families, and the organizations that support them, in more than 75 countries.

The vision for the celebration of World CP Day is to ensure that children and adults with Cerebral Palsy (CP) have the same rights, access and opportunities as anyone else in our society. It is only together, that we can make that happen.

The Special Mothers Project, an advocacy and awareness creation programme on cerebral palsy issues and issues affecting families raising children with disabilities in general, in a statement signed by Mrs Hannah Awadzi, Executive Director, called on government to create one stop rehabilitation centres where parents can leave their children to enable them work and earn a living

The theme for the celebration of World CP Day 2020 is: Make Your Mark, the Special Mothers Project is calling on Ghanaians to make their mark this world CP Day by embracing and accepting children with cerebral palsy

In Ghana, many children with cerebral palsy are shunned, many are denied the right to education, good health and inclusion.

The Special Mothers Project is calling on all Ghanaians to accept and embrace children with cerebral palsy to help enhance their lives

There are about 17 million people across the world living with cerebral palsy (CP). Another 350 million people are closely connected to a child or adult with CP.

Cerebral palsy is the most common physical disability in childhood. CP is a permanent disability that affects movement. Its impact can range from a weakness in one hand, to almost a complete lack of voluntary movement.

It is a complex disability: 1 in 4 children with CP cannot talk, 1 in 4 cannot walk, 1 in 2 have an intellectual disability, 1 in 4 have epilepsy.

Cerebral Palsy is a lifelong disability and there is no known cure.

Thursday, October 1, 2020

Media Organizations should make their content accessible to Persons with Disability

Mr Peter Anomah-Kordieh, Programmes Advisor at Sightsavers, a non-governmental organization, has called on media organizations to make their content accessible to persons with disabilities


He said the media could use Assistive technology such as screen readers for blind persons, use of sign language interpreters on TV screens among others to make media content accessible to all types of persons with disability

Mr Anomah-Kordieh gave the advice at a media training workshop and Disability and Mental Health Inclusion, dubbed: Ghana Participation Programme, a UK Aid funded programme being implemented by Ghana Somubi Dwumadie, in partnership with Basic Needs Ghana, Kings College London, Sightsavers International and Tropical Health, all non-governmental organizations.

Mr Anomah-Kordieh took participants through acceptable language to use when reporting on disability and urged the participants to always seek clarification from persons with disability themselves when reporting about them.

He urged to media to seek knowledge on the appropriate local language description for persons with disability, saying, most of the words and the proverbs used in the local language are derogatory to persons with disability.

Mr Fred Nantogmah, Knowledge Management and Communications Officer at Basic Needs Ghana, said the media should not condone ableism and tokenism when reporting on disability issues

Ableism is discrimination in favour of non-disabled persons and tokenism is a situation when members of a particular category are treated differently from other people.



The Special Mothers Project is an advocacy and awareness creation programme on cerebral palsy issues and issues affecting families raising children with disabilities


Wednesday, September 23, 2020

Purpose, not Healing

 

The other day, I was reminiscing my journey with my daughter Avery Eyram Awadzi, who lives with cerebral palsy. I tried to analyze what has and continue to keep me going with a lot of positivity, optimism and hope and I think I found it.

I looked for purpose and not healing, I was not desperate in finding healing for my daughter by hook or crook, I was looking for purpose.

My, “why me’s” were not directed at healing but purpose. I honestly believe that asking why me in a situation is not bad at all, however the reason behind your why me should lead you to purpose and not frustration or despair.

So one of the very first moves I took when my daughter was only a year old was to isolate myself for prayer.

 I am someone who fantasizes spirituality and praying was my first option. In fact, in Ghana where I live, when you have a child with challenges, the first thoughts are usually spiritual, it is either someone wants your downfall and couldn’t get you so got your child or you have been cursed.

I told my husband I was going to the popular “Atwea Mountain” to pray, it wasn’t the first time I was going to Atwea to pray, I was regular at Atwea, prayer has been part of my life since infancy but this time I was going to seek purpose.

Atwea Mountains is famous for prayer and spiritual activities, it is a very high mountain located in the Ashanti region of Ghana, climbing it is very tedious and this time, I was going to climb it with my one-year-old daughter who isn’t walking because she has cerebral palsy, not only that I was pregnant, early stage of pregnancy with my son (smiling)

But I was determined, determine to seek purpose, questions on my mind at the time included: why should a young Lady who has been zealous for the Lord all her life, get married (the proper way) and give birth to a child with a challenge.

I had done everything right, during pregnancy but most importantly I had prayed fervently for this child. I really looked forward to being a Mother and this situation was too unexpected. That is why I titled my first book: The Unexpected, it chronicles my initial journey with my daughter with cerebral palsy, it is on Amazon, “The Unexpected by Adwoa Okorewaa”

https://www.amazon.com/Unexpected-Pain-Gain-Adwoa-Okorewaa-ebook/dp/B08CGP6D59

I also remember my husband asking when I told him I was going to Atwea Mountains to pray, that I am sure I was going to come back with a healed daughter (a question that made me laugh despite my sorrow at the time) my answer was an emphatic No, I told him that I know a gentleman by name Isaiah, he is physically disabled, a wheelchair user and a very good singer who features very regularly in our Atwea Mountains programmes.

The Presbyterians has a six monthly prayer retreat at the Mountains every year and Isaiah, the wheelchair singer, pays someone to carry him and his wheelchair up the mountain every time to feature in the programme by ministering to us in songs.

This gentleman Isaiah is very close to the Pastors and Prophets who lead in this programme and he has been doing it for years, yet every year he comes in his wheelchair.

I wasn’t expecting that just by going to the Mountains to pray, my daughter was going to rise up and walk just like Peter and Paul did for the “cripple” who laid in front of the Beautiful gate in the book of Acts.

I was looking for purpose not healing, I remember spending majority of the time I was at the Mountain crying without words, I didn’t know what to tell the Lord, I just felt pain at the time.

I must acknowledge, however, that pain teaches you things that happiness may never be able to teach you. I have learnt so much from pain, I have been blessed from pain and most importantly I have learnt that pain is not a stopper.

It was at the Mountains that I bought a book written by Dr Samuel Ofosu Onwona titled “Prayer, Praise and Worship”, that book challenged me to praise and worship God in spite of the challenges I was seeing an in doing that I found purpose.

My constant Prayer, praise and worship birthed The Special Mothers project -www.specialmothers.org one of the many purposes I found in having Eyram

Are you going through a painful situation in life? Be it nurturing a child with challenges, childlessness or whatever, I will advise that you look for purpose, in purpose, healing is found, joy is found, love is found and fulfillment is found.

Find Purpose!