Wednesday, May 26, 2021

Advocating for Autism Acceptance in Tanzania

M. Kelter
theinvisiblestrings.com

CN: Physical abuse

A few months ago, I was contacted by an autism support organization in Tanzania, and asked to follow their upcoming public events on social media. The group is called the Living Together Autistic Foundation (Li-TAFO) and created these events as a way to share autism education and reduce stigma in communities that otherwise have little to no resources available. As these efforts began to unfold, it was clear from their Instagram page that audiences, initially small, were growing into much larger crowds. To better understand the purpose of these events and their potential impact, I communicated via email with Li-TAFO’s creator, Shangwe Isaac Mgaya, who is currently endeavoring to create an autism center in her area that would be the first of its kind.

Photo of a group of Tanzanian adults and children, in front of a LI-TAFO banner.
Photo © Li-TAFO
[image: Photo of a group of Tanzanian adults and children, in front of a LI-TAFO banner.]

M: On your social media, I have been seeing the images and videos you share from these gatherings. Do you mind describing these events and how they have been going so far.

Shangwe: First of all, families with autistic children have challenges with living conditions, most of them are single mothers, even food and shelter is a problem. The first event was held on 22nd November, 2020. I decided to arrange a day for donations of food and clothes to the families, and we had some food and drinks together which made them feel good as this was the first event of its kind to happen in Mwanza-Tanzania, so they felt very good and they felt to be remembered and the families had the experience of knowing that they are not alone. By coming together they felt that they are many families. It is common for fathers to leave their house when autism is diagnosed in a child, women are left alone with all parenting responsibilities. So by meeting one another at this event, they encouraged each other. 

The second event was a training for fathers, caregivers and siblings, which was held on the 14th, 17th and 19th, February 2021. Families suffer due to not understanding autism and believing it to be caused by witchcraft; understanding is very low, so we had this training to help them learn to take care of autistic children without harming them. By doing so, we want to reduce stigma at large and hope this awareness will increase at large as well.

We held Autism Awareness on 23rd April 2021, which had more than 350 people including autistic children, parents and caregivers, doctors, and therapists. We know in our society people relate autism with witchcraft, so we aimed to create awareness of autism as April is a month of awareness. We also distributed some books to the families .And we wanted the government to understand how big this challenge is and we invited the guest of honor to be the prime minister of education in our country, the honorable Joyce Ndalichako. We hope our voice has reached the government. We believe that by inviting the honorable our voices will be heard.

M: Was this the Rock City Mall event? That appeared to have a very large audience. Could you share details about that day and about how the audience reacted to the information you shared? 

S: The event that was done at Rock City Mall had a large audience because of the announcements for it on social media, television and radio. We want families of autistic children to feel that they are not supposed to hide their children any more and that it is better to come together to these events and learn much about autism. We had some students from different schools who came with their parents to learn more about autism and people were very happy to learn more. Parents were curious to learn more. We have many challenges, like not enough access to schools and the problem of stigma. 

We thank the government for standing up together with Li-TAFO to create awareness together. They can help us to solve this, as the number of children increases every day; awareness of autism can increase also and hence we will be reducing stigma at large. We know these kids are rejected by schools. The environment of the schools must be conducive to our children so that they can enjoy them as other kids do.

I shared awareness also at St Augustine University of which I spoke to more than 450 students. I introduced myself and asked if anyone knows about Autism but unfortunately only one student knew about it and they were very interested to know more. We tried to give them leaflets. Finally I tried to insist that they be good advocates and parents to their families, not to run from responsibilities. It was their first time learning about autism, they were very curious to know more, so I arranged a future visit. They want to know more, they were very thankful.

M. Do you mind summarizing Li-TAFO’s goals and how the group got started? Also, as you emphasize the stigma that is placed on autism, I am wondering if you are finding strategies that are effective in changing minds?

S: Li-TAFO is a non governmental organization which is located in Mwanza-Tanzania with the aim to create a world where autistic people and their families can enjoy their full rights and potential. I learned my son has autism when he was 4 years old. I remember I tried to visit several hospitals in Dar-Es-Salaam, which is another city with a lot of specialists. They did not know what the issue was until I met a certain Indian Doctor who diagnosed it as autism. After that I moved to Mwanza-Tanzania and here I tried to take him to different schools. They all rejected him and finally I found another school in another city, which took 14 hours to reach from the place I live. I was allowed to stay at the city of this school for one week and then come back home and stay home for two months and then go back. 

When I was there, I met a lot of parents from that city and from nearby cities. After meeting them, I created a WhatsApp group where we can share different updates and at the same time I was trying to post about Autism in social media like Facebook and Instagram and I came across many parents who share these experiences. Finally, I came to start Li-Tafo, which was Registered on August 2019.

So far the organization has tried to link parents with services like doctors and therapists, creating awareness through radio, television and social media, counselling the parents of Autistic children because at first many find it difficult to accept the challenge. We want people to release children who are kept hidden in their houses due to stigma, so we are training the families, caregivers and siblings, donating some clothes and food to the Autistic families and bringing the families together and having some food together. We are creating zoom meetings with families and therapists and we have created a group in WhatsApp which includes government leaders, specialists and caregivers of Autistic children all over Tanzania. 

As stigma is the biggest issue, we want to be effective and create events in which celebrities and also public figures like government leaders can speak in front of people and by doing so, get more people to be curious about autism and turn away from belief in stigma in large numbers.

M: Please do not feel any pressure to answer this question, but would you like to introduce yourself? What would you like for people to know about you and your family?

My name is Engineer Shangwe Isaac Mgaya a graduate of 2010 at University of Dar-Es-Salaam and a mother of 2 boys and one girl, ages 10, 7 and 4. My first born Daniel is the one who has autism. As a mother, it hurt when at the beginning in-laws blamed him for having a curse, and saying that their clan does not have this type of child. After that we underwent a lot of conflict, there were beatings and the father was provoked away from his son. Finally we were separated in 2016 when I was pregnant with my last child, my daughter. He went to the court for divorce and he told the court that the kids are not of him, though DNA tests found the children belong to him. What a shame to him and finally I am officially a single parent with my three children. I thank God for everything because I Know God has the last say.

Daniel, my first born, he is my story. I can stand before the world as he has made me as I am and I can stand before the Lord to tell about his life as he survived a lot including having boiled water poured on him by house maids, who were told by the neighbors that witchcraft is why he behaves the way he does; irons were placed on him and still by the grace of God he is surviving. He does not always understand when he is in danger, I wish for a speech tablet as communicating with him is difficult. He sometimes runs from home to unknown places and we have to find him.

M: When is Daniel the happiest? Autistic people can experience such intense joy, are there specific things he likes or activities he enjoys the most?

S: Daniel likes swimming and can play with water for more than 6 hours a day. He likes swings, the bicycle and watching TV, though he broke the one we had. He very much likes eating rice, chips and bread, when he gets them he can be very happy.

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Follow Li-TAFO on Instagram: www.instagram.com/litafo_tanzania/
Donate to Li-TAFO directly: www.givingway.com/campaign/6e756d