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....."

Happy New Year..... Real Transformation

Happy new year friends,

This is the beginning of another great year, it is my hope that you will have a great one.

Three years ago like today during a disability community outreach I met Bakari a boy with hydrocephalus. His parents were scared about the condition and they thought he will not make it, from  home visit we managed to get him medical  and rehabilitation support that has transformed his life.

Three years down the line Bakari is all grown up and has just joined kindergarten and Day Spring school at Youth with A Mission Base. This is real transformation that gives me hope. Please pray with me as I pursue this cause.


PS: The above picture is of Bakari before and afterwards.

Regards from Tanzania

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!

Darling angel with hydrocephalus

Five months ago. I met this beautiful two day old Angel baby-Amina (pseudo name used), she was carried on her mom’s back but her head was totally covered….. This created an impression that something was being hidden. After approaching her mom I realized that the baby had hydrocephalus (water in the brain) making the head circumference grow wider than it should.

In a sorrowful mood her mom who was just eighteen explained how it is a taboo to have a child with such a condition and children with hydrocephalus don’t survive past five years, she thought her marriage will not last too (since most women in the area who have children with any form of disabilities are divorced). From the few minutes dialogue that we shared I empowered her with knowledge on that took us to another step…where she could get help.

Five months down the line, I decided to do a home visit in the hilly and green village called Vianzi to find out how things are…. 

 

It was all a success and the community members were very happy and thankful! I was happy that the whole baby-Amina’s success has changed the negative attitude that people in the village had towards hydrocephalus.

 

It just takes knowledge to touch and change people’s lives! Cheers 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!