Is Termination of Spina Bifida Pregnacies Right?

In our current world, termination (abortion) of pregnancies with spina bifida is becoming a norm as parents are lured into it right after prenatal tests. In most cases this happens after medical professionals present one side of the coin that predicts challenges of lifelong care for children with spina bifida and hydrocephalus. In some cases parents are denied the chance of making their own decision independently.

Some countries have gone to an extent of legalizing this process. However, NO ONE can predict the quality of life that an individual with spina bifida and hydrocephalus can have. This fact therefore leaves a space for children with spina bifida to live and be who they are meant to be.

Abortion of pregnancies on basis of disability like spina bifida and down syndrome eliminates the aspect of diversity in our world, this is also a way of hiding issues instead of solving them. Existence of people with spina bifida and other disabilities provides creativity and innovation.

International Federation for Spina Bifida and Hydrocephalus has gathered a number of personal experiences of people with spina bifida and hydrocephalus and all the stories have one thing in common: Love for life

PS: Spina bifida is defect of the spinal cord that occurs a few days after conception

Life is divine!

Cheers.

Claiming Your Right as a Woman with Disability

Women with disabilities tend to get double discrimination; by the fact that they have  disabilities and secondly as women.This therefore makes them to be more vulnerable and marginalized in their communities.

Convention on the Rights of Persons with Disabilities (CRPD) provides legal measures that can protect, promote and fulfill rights of women with disabilities .

On 8th of March 2018 we commemorate international women day and  knowing certain factors can enable you to claim your right as a woman with disability:

• Having a disability does not eliminate the fact that you are a woman;
• Get registered as a person with disability by national disabled persons organizations;
• Knowing legal framework that protect you locally, nationally and internationally;
• Join women rights movements both for persons with disabilities and mainstream movements (unity is strength);
• Grab opportunities that lie ahead of you;
• Request reasonable  accommodation at work, learning institution, hospital and community;
• Learn self defence tactics
• Know where to seek help or to report when your rights have been violated;
• And for the women with disabilities who have made it in life let's reach out by mentoring other women with disabilities.

Have a great women's day!

ps:photo of Carol Wanjira a young woman with spina bifida

CRPD and SDG fellowship

Since the beginning of April 2017 to this moment has been my fellowship journey with International Disability Alliance and International Federation for Spina Bifida and Hydrocephalus. My main duty has been to empower a network of spina bifida and hydrocephalus organizations based the Convention on the Rights of Persons with Disabilities and Sustainable Development Goals.

How to be a Self Advocate

Have you ever found yourself in a situation where your voice is not heard, wings have been stepped on or your rights violated? That's what it takes to be a self advocate?

Such situations happen to everyone, whether you have a disability or not. however, people with disabilities tend to experience this on a regular basis.


There are important steps that will assist you in being who you are supposed to be or achieving what you want:

• Believing in your self; this includes knowing your worth and acknowledging that your disability is part of worlds diversity.
• Knowing your rights, benefits and responsibilities; knowing local, national and international laws that protect, promote and fulfill your rights like the Convention on the Rights of Persons with Disabilities (CRPD).
• Discussing your questions and concerns
• Put your concerns in writing
• Get information and decision in writing
• If that doesn't work use chain of command
• Follow up

PS: The above picture was taken during a self advocates workshop for youth with spina bifida and hydrocephalus in Kijabe Kenya.

Happy new year to you all!

Every Life Does not Count

Life is the most precious gift ever, however, there are controversies on who has a right to live and who doesn't have a right to live.

From my personal experience of living with spina bifida, hundred of friends with spina bifida and hydrocephalus who surround me not forgetting hundreds that I am serving here in Tanzania..... we are trying to bit all odds and living just like anyone else.

Globally, there are human rights treaties that intend to protect the lives of people with disabilities, however, lives of individuals with spina bifida, hydrocephalus and down syndrome do not count, slowly the world has justified this by allowing termination of pregnancies on basis of disabilities. This has diminished the worth of people with these disabilities... In my own opinion this is like being told you are not supposed to live because you have spina bifida, hydrocephalus or down syndrome.

For this reason, I am leaving you with a food of thought..... Does every life count?


Psalms 139:14  "I praise you because I am fearfully and wonderfully made....."

Mentoring Young People with Disabilities in Kilimanjaro

There is nothing as hard as growing up without understanding yourself or even worse finding means of skipping the hurdles that life presents. Living with spina bifida was a challenge for me before I met someone who I could journey with.

I however, thank God because I found one mentor who journeyed with me and in the same way I was able to mentor young people with spina bifida and hydrocephalus in Kilimanjaro through CCBRT Moshi

 

It was an inspiring and fun moment as we learnt together about our basic rights as people with disabilities, life skills and basic information on spina bifida and hydrocephalus. We had class lessons, group discussions, fun evening and inspirational movie night.

 

As I was leaving the young people were happy and full of positive energy than I found them.

 

Keep praying with me friends!

Spina Bifida and Hydrocephalus Conference in Sweden

Spina bifida and Hydrocephalus remain to be part of many existing developmental disabilities in the world today. every year more that 1500 children are born with the condition. Without social and medical support many children with these disabilities end up dying at a tender age. However with social and medical support most of them have grown up to bit many odds and they have managed to live their live just like other people who do not have the disability. 

I have been invited by the International Federations for Spina Bifida and Hydrocephalus in Stockholm Sweden from the 13th to 18th of June to learn skills about the care of individuals who experience this challenge. This will be a good experience and it will help me in helping more individuals with and without the condition. I believe this will create a better world in a smaller way!