Tag Archives: Disability

This week in perspective: A roller-coaster of emotions.

Black woman hugging her knees
Black woman hugging her knees Image credit: infochristo.com

 

This week has been a mixture of emotions to me. First, it started with losing a friend to cancer. Then as if that was not enough, I met a nephew to someone I cared for in hospital, who eventually died of cancer.

The nephew seemed to be ignoring me, so I acted like I did not know him. After all, it was working hours and I was on official business. I picked the document that I had been sent to pick and went ahead to a function to celebrate the International Women’s Day.

All through, I was wondering what hostility existed between us that this person was still ignoring me after all these years. I concluded for the moment to let it be as it is and move on. After all, when his uncle died, they never told me anything. I only discovered three weeks after his burial from a friend of his whom I met in hospital. This was through a phone call I made after being worried about the uncle.

Going home, the thought kept bugging me. I decided to text the nephew and reintroduce myself. You must have forgotten me… I am so and so.

To my surprise, the guy genuinely did not recognize me. His uncle tried to arrange a meeting between us when he was in hospital, but he was busy at work. The uncle even gave me the nephew’s number. That explains why I had the number. For someone who used to see me 15 years ago, before I had the disability, it would be understandable. “I am happy you looked good,” he said. “I hope you are keeping well,” he added.

The next day I met a friend whom I nearly married. I noticed he had a wedding band on his finger. I asked him why I was never invited to his wedding. “It happened too fast,” he said. I was happy he found the right one and was happy with her. Later that evening, he sent me a text apologizing for having disappointed me. “You have not disappointed me. It was just never meant to be,” I replied. “May God bless your marriage,” I added.

This same week I received a call from Elza, mama Earnest. I was so happy to have finally connected to her. I have been looking for her like crazy. It just so happens that she has also been looking for me. We are yet to meet, but I know we have a lot to catch up on.

What I learnt this week is you have to take initiative to reach out. Never make your own conclusions. And what is meant to be, will be.

With love from,

Juls

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Raising a disabled child in Maasai land

By: Rading Biko Gerro.

Yiamata Lootasati in her compound in Elangata Wuas, Kajiado county
Yiamata Lootasati in her compound in Elangata Wuas, Kajiado county

She wakes up at 5 a.m. to cook breakfast to send the other children to school on time. She then proceeds to care for the cattle by taking them to the water shed then rushes back to care for her disabled daughter. At around midday she has to walk distance to fetch water for her family and she has to rush back to care for her disabled child. This is the daily life of Yiamata Lootasati, the 35-year mother of 9 who has a disabled child.

Once in her home one cannot miss the sight of Yiamata either at work, tending animals, carrying a baby, breast feeding, fetching fuel wood from the surrounding thicket, carrying water containers, or building and repairing a manyatta. The classic multitasking of the female species.

In between her burdensome chores of the day the Maasai woman is also a beader with such intangible high skills built into her cultural knowledge and practices.

Most of her struggles are shaped by circumstances and the challenges of her time including deep seated patriarchal attitude. The woman is simply faced by the “triple burden”: to reproduce, to produce and to bear all the other social roles.

The 2009 Kenyan census estimated that there were 1.3 million disabled people in the country, only three percent of the population. Though the numbers are hard to verify because some children with disabilities are kept hidden and out of family counts.

Stigma plays a role in the discrepancy and adds to the problem. Families will keep children born with disabilities out of sight from their neighbors.

Mengea Lootasati is aged 15 years but she does not look her age due to her disability situation, she was born normally like any other healthy baby, but her parents realized she was disabled five months later. Yiamata described her daughter as being healthy when she bore her and it was very hard for them to realize she was disabled.

Yiamata caring for Mengea at their Homestead
Yiamata caring for Mengea at their Homestead : Photos- Biko Rading

“Mengea was overweight when I gave birth to her and we thought she was just  overweight. She would take long to move her arms, but later we realized she was disabled,” laments Yiamata.

In Maasai land myths about the causes of disability persist and in one case, neighbors blamed the disability on bad spirits. They claimed that a murder committed by a previous generation was being punished through the disability of Yiamata’s daughter.

The family did not seek out modern medicine until traditional methods were exhausted. That’s when Action Aid Kenya and Loodikilani women network stepped in 2013 and sensitized her concerning disability. Apart from education, Action Aid Kenya catered for the daughter’s therapy, which she has been undertaking for one year.

Doctors says that Mengea’s case is a special one since her parents did not realize her situation early. “Doctors says her left side is entirely paralyzed and she will only be able to use her right side in her entire life,” narrates Yiamata, a tear flowing down her cheek.

Most parents with disabled children do not even consider the option of educating them. Some are kept tied up and even caged. Yiamata plans to enroll Mengea to a special school.

“Action Aid have trained me on the right for girl child education and that why we have decided that we shall enroll her in a special school. She would meet other children with her special needs, and would not be discriminated,” Yiamata says smiling.

According to Kenyatta National Hospital staff disabled children who get care at health centers are often unsupported when they return home. For children like Mengea, the cost of traveling to the nearest clinic is too great even when care is free.

Though raising a physically challenged child, Yiamata is an enthusiastic woman. She has challenged many to fight stigma and discrimination faced by People Living with Disability across Maasai-land. Through the training, vows to educate other women in Elanga Wuas on the need to care and love children with special needs because they too are children.

Blindness is relative: inABLE’s IT Bootcamp

Thika Primary School for the blind signpost.
Thika Primary School for the blind signpost. Success is our major goal: Disability is not inability.

The best and most beautiful things in the world cannot be seen or even touched – they must be felt with the heart.- Helen Keller

Cocktail parties are places of filled with possibilities. This one introduced me to the great work of inABLE. That evening, Microsoft was awarding nonprofit organizations with monetary donation of $50,000 each. They had just been awarded the Microsoft #Upgradeyourworld prize, as one of the Kenyan NGOs that impact lives positively.

I was curious about their initiative because they work with visually impaired children. Catherine Wamwangi, their country representative was more than willing to let me tell their story. She introduced me to Peter Okeyo, their program manager who took it over.

November 29, 2015, I set out to Thika Primary School for the Blind to see how visually impaired people use computers. They had an IT boot camp for students from three schools. Thika, St. Oda and St. Lucy schools for the blind.

Those children challenged me to my core. They use desktop computers and iPads like real gurus. The camp aimed at equipping the students with Java programing skills.

Walking around the school compound, I was accompanied by Zackary Muasya, a totally blind trainer with inABLE. He knew his way around the school pretty well. At some point, I was torn between offering my help, to help him navigate the not so familiar way through the school. I know too well how it feels for a person living with a disability when everyone thinks you need their help. It has happened to me- from very well meaning people.

I ask how I may assist him. “Just hold my hand”, he says. All along the way, he is really aware of his surroundings. Greeting people, noticing a fire that’s burning rubbish, and even directing me on the way to go. Zack knows how to build rapport and keeps the conversation going until we reach the secondary school block. I learn that Zack recently graduated from the University of Nairobi. One of the achievements he left there was a body representing students living with disabilities.

We reach the class that has over 20 students, all busy on their talking iPads. I address them like many other visitors who have probably come to see them working in the past. Then, just then, I feel compelled to inform them that I am also physically challenged. “Today you have proven to me that disability is really not inability”, I tell them.

Part off the IT Boot Camp.
Part off the IT Boot Camp using iPads.

These children have great dreams of becoming great people in society. One girl wants to be a lawyer another a magistrate to fight for the rights of people with disability. Moses from St. Oda wants to be a teacher, because he appreciates the work teachers have put into their lives. One boy even types my blog address on an iPad.

There are totally blind, partially blind and students living with albinism. Georbert Athoo, one of the instructors tells me that people living with Albinism are classified as visually impaired. “We train them on braille because eventually, there is the possibility of losing their sight altogether”, he says.  “We train primary school children and the staff working in the schools”, he adds.

Walking back to the primary school block, Zack gives me a tip on typing using one hand. “Have you tried using the sticky keys?” he asks. “It helps when you have to type multiple keys on the keyboard concurrently”, he adds. I went in search for a story and ended up with more than one lessons, I silently tell myself.

As if to crown it all, Zack remarks, “I don’t worry of my Inability, Instead, I focus on what I can do”, he said. “I live a normal life, just like a visually able person”, he adds.

Zackary Muasya, an instructor at inABLE and Juliet.
Zackary Muasya, an instructor at inABLE and Juliet.

Peter tells me that they discovered some of these tricks when they were met with challenges. “We have grown from a few slow computers in 2009, now we have computer labs for the blind”, he says.

inABLE encourages corporates to develop easily accessible sites for visually impaired people. Keeping in line with their mission to provide accessibility to visually impaired persons, they offer their services to corporates, making websites more accessible. Some of the corporates they work closely with are Safaricom Ltd and Safaricom Foundation.