Joy and pain of raising a child with cerebral palsy By a Guest author: SIMON MBURU

When Susan Nyambura’s son was diagnosed with a developmental disorder immediately after birth, her husband abandoned them. Six years later, she soldiers
on.

“My name is Suzan Nyambura. I am a mother of a six-and a half-year-old boy. I still remember how my then-husband and I had eagerly waited for the birth
of our son, Gabriel Kamonzo.

In fact, the sheer ecstasy that overwhelmed me when I first took a pregnancy test and got positive results in early 2012 is still deeply etched in my mind.

I had a smooth pregnancy up until I went into labour that September. I checked in at a private hospital in Mombasa for delivery.

By then, my water had already broken. I was immediately admitted to the hospital’s maternity wing. Over the next two days, I underwent an extensive and
excruciating labour process.

WORRY, PANIC

The doctors examined my birth canal and concluded that I had not dilated enough. At some point, I requested for a caesarean delivery. But my request was
turned down. The doctors said I was not an emergency case.

I seemed stuck in labour. Painful but unfruitful contractions kept coming and going. But eventually, on September 12, I gave birth to a bouncing baby boy.

Seeing my baby pop out erased all the pain, struggle and shame that the labour and delivery process had bestowed on me. Tears ran freely down my cheeks.
At long last, here was my beautiful God-given son!

This joy, though, did not last. In fact, it ended as soon as the doctors started to examine my son moments after birth.

Instead of a sigh of relief and congratulatory glances, I saw worry and panic on their faces. Their facial expressions betrayed their concern that something
had gone wrong.

EXAMINATION

Then it hit me like a thunderbolt. My son had not cried upon birth! Although I was a new mother, I had heard that newborns were supposed to cry once they
popped out.

Failing to cry was an indicator of a defective birth process. I desperately tried to inquire what was wrong. But I was reassured that all was well.

I was told to stay put and wait for my episiotomy stitches. This was really the least of my concerns.

Later on when I left the delivery room, I was informed that the doctors had taken my son to the nursery, where they were examining him.

They found out that Gabriel’s neck was abnormally weaker. This was compounded by his failure to breastfeed when they brought him to me.

Over the next one week, I fed him on glucose and warm water while the doctors sought for a diagnosis to his problem.

DIAGNOSIS

On October 7, 2012, I was transferred to Coast General Hospital. By then Gabriel was 10 days old.

The doctors recommended that we observe him over the next three months and see if his neck would firm up. But it didn’t.

By the third month, I took him to Kenyatta National Hospital, where he was diagnosed with cerebral palsy. This is a medical condition that affects a child’s
muscle tone, movement or posture.

It is caused by brain damage that occurs before or during a baby’s birth, or during the first three to five years of a baby’s life. This diagnosis left
me utterly terrified and confused.

My baby was so tiny and helpless! Yet, the more I inquired about his condition the more scared for his life I became.

I was afraid that he would develop breathing problems, have no control of his bladder and bowel movement, and drool throughout the rest of his life.

ABANDONED

Perhaps I would not have worried too much if someone had held my hand and told me that it was all going to be okay.

But there was no such person I could have leaned on! Friends kept away, and some of those who reached out claimed that my baby was cursed, and that I needed
to take special prayers and cleansing to cast out whatever spell had befallen him.

The most disheartening of all was the abandonment by my baby daddy. He said Gabriel was not his son.

Although I had named my son after his father, he completely rejected him after the diagnosis.

He claimed that he could not have fathered a child with such a disability. Over the next few years, I tried to reach out to him because I wanted my son
to have a father in his life. But he shut us out completely.

#TOUGH TIMES

It is now six years since my son came into this world. We are still on the recovery journey, but raising him has not been easy at all.

There are some days when his condition becomes too overwhelming for me, especially when he is unwell.

I cry a lot and at times question God on why my little boy has had to suffer so much. It really breaks my heart when I see him struggle to meet basic development
milestones.

His growth is very slow. Today, he can’t sit on his own and relies on a wheelchair. He also can’t talk or even walk.

But perhaps the hardest and most tormenting moment is when I am unable to provide food because I am joblessness.

I remember that I had to start working as mama fua (laundry and cleaning lady) in order to fend for him a few weeks after his birth.

#HEALTHCARE

It was not easy. I was forced to go knocking door-to-door asking for home cleaning jobs with my ailing son strapped on my back.

A few weeks ago, I left my son behind in Nairobi and travelled to Mombasa, where I am currently looking for a job as a bouncer.

I have pegged my hope in God that something will show up and give me the much needed income so that I can sufficiently care for my child.

He is currently not undergoing any medication or therapy, and I would wish to enrol him in a corrective physical, occupational and speech therapies that
will help improve his life.

Above all, I have learnt to keep my head above the water by constantly reminding myself that this is my son, and God had a good purpose for giving him
to me.
Every day, I pray for him. I hope one day he will realise just how much I love him, and how much he means to me.”

Why the disability sector in Kenya needs a urgent transformation

Persons with disabilities in Kenya account for 15 % of the population [WHO 2011].
Yet they are the most marginalized and lack the basic services from the government.
Obviously since the independence persons with disabilities have been treated as second class citizens.
This is because of the existence of economic, social and political disparities.
on the other hand, others argue Both government and the private sector have played a critical role towards development and design of disability policies.
This is evidently seen by the persons with disability act 2003, the special needs policy 2009 draft disability policy, national accessibility action plan 2015.
All these gains are towards improving lives of persons with disabilities. Therefore, we need to have a third eye lenses to ask ourselves.
Are these policies achieving their objectives? Are persons with disabilities able to effectively participate and included in all services?
The jury is out there.
As the 47 governor’s meet in Kirinyaga for their sixth annual conference in March 2019, a time has come for them to seriously interrogate how they can enhance access to services for persons with disabilities

Basic services and functions were devolved but persons with disabilities have received a raw deal.
The lack of national disability framework where the national government offers regulation to the counties and policy guidance has rendered persons with disabilities inactive and denial of services at the county levels.
This has greatly led persons with disabilities to be left behind thus not meeting the vision 2030 and the famous sustainable development goals. SDGS.

If county governments do not properly entrench disability matters in the ‘Big Four” agenda that is defining Jubilee’s development plan, as it presently looks, desired results
will not be achieved even if the national government yields to the ongoing clamour and cedes more cash to the devolved regions.

County governments are the game-changer in two of the Big Four agenda items, namely expansion of the manufacturing sector, and food security. The central
government must be applauded for the huge infrastructure projects it has initiated to connect the counties. The question is these infrastructures accessible to persons with disabilities?
With this massive project we need to have third eye lenses and ask ourselves are persons with disabilities properly being included?
For instance, in employment what percentage of persons with disabilities were involve?
In the tenders were persons with disabilities engaged?
Its high time the county governments
shed off their wasteful and autonomous and unaccountable attitude and explain their disability mainstreaming agenda.

Devolution gave persons with disabilities hope that it would bring services closer to citizens, increase job opportunities and improve governance. Far from it, if the reports
on the impact of devolution are anything to go by.

Unfortunately, persons with disabilities affairs in the counties have been identified as a main agenda but only to be pushed at the periphery and set in to other broad areas such as social services.
Furthermore, most counties have no dedicated advisors or policies on disability matters.
This is reflected by the low service delivery a lack of mechanisms to support disability mainstreaming.
According to ILO the largest minority in the world are persons with disabilities.
They highly face discrimination, stigma and institutional barriers.
Thus, many persons with disabilities cannot afford basic necessities like food, shelter, clothing, healthcare, and education.
There is also the need to increase the participation of persons with disabilities in governance at the county level. Most of the counties have not adequately engaged persons with disabilities
in designing, planning and implementing programmes. As a result, the knowledge, skills and energy that the persons with disabilities full population harbours goes underutilised.
As a public policy scholar, I opine that its high time. The disability sector in Kenya got a transformation.
This transformation would gain more tract to the citizens with disabilities.
Some of the key areas is moving from charity to human rights in service implementation.
Provide individual choices thus promotion of respect and dignity to persons with disabilities.
The disability sector should immediately stop talking to itself.
Stop board room meetings and step in the the mud.
This will ensure bottom top approach in public participation of persons with disabilities.
This is because the county governments are the service delivery points and more resources are being devolved..
To eliminate the possibility of alienating this potentially most productive group, decision-makers and other stakeholders at the national and county level must take deliberate steps to ensure the persons with disabilities are at the centre of development plans.
This is by having a national disability framework which stipulates the role of the national and county governments in service delivery for persons with disabilities.

Paul Mugambi
Is a public policy and diversity and inclusion expert.

Economics of disabilities; what we’re not told Kenyan story

July 24th 2018 the UK government, in partnership with Kenya and the International Disability Alliance (IDA), co-hosted the first ever high level global
disability summit in London. The aim of the meeting was to galvanise global efforts to address disability inclusion.
The summit brought together more than 700 delegates from governments, donors, private sector organisations, charities and organisations for persons with
disabilities. Mr Ukur Yattani, the Cabinet Secretary for Labour and Social Protection led the Kenyan team.

Globally, one out of every seven people live with some form of disability, the majority in low and middle-income countries. In these settings, disability
is both a cause and consequence of poverty because people with disabilities often face significant barriers that prevent them from participating fully
in society, including accessing health services and attaining education and employment.

According to the World Health Organisation, about six million Kenyans are persons with disabilities. The Kenya National Survey for Pwds, 2008, says nearly
80 per cent of these six million people live in rural areas where they experience social and economic disadvantages and denial of rights. Their lives are
made more difficult by the way society interprets and reacts to disability. In addition to these barriers, Kenya still lacks a policy that operationalises
laws on disability. The National Disability Policy has remained as a draft since 2006!

But let us look at disability from different frames. Have we thought about the significant contribution in the economy made by people with disability as
consumers, employers, assistive technology developers, mobility aid manufacturers and academics among others? According to Global Economics of Disability,
2016 report, the disability market is the next big consumer segment globally — with an estimated population of 1.3 billion. Disabled persons constitute
an emerging market the size of China and controlling $1 trillion in annual disposable income.

Do people working directly in these industries pay taxes? Does anyone have an idea of the revenue — direct or indirect— collected by government from disability
industries, organisations, import duty charges on assistive devices and other materials used by persons with disabilities? What of the multiplier effect
of the sector; transporters, warehouses, and PWDs themselves who are active spenders and who pay both direct and indirect taxes.

SH40 BILLION

Just look at it this way; six million Kenyans (going by WHO’s estimate) are persons with disabilities and its assumed about two million of them are wheelchair
users. The cheapest outdoor wheelchair fabricated locally is about Sh20,000, translating to a staggering Sh40 billion! Imagine the rest using crutches,
hearing aides, white canes, braille services and costs of hiring personal assistance. Undoubtly, this is a huge market.

The contribution of people with disabilities far outweighs what is allocated to them through affirmative/charity considerations.

President Mwai Kibaki signed The Persons with Disabilities Act, 2003, in what turned out to be the most unprecedented disability legal framework in Kenya.
The Act led to creation of a State agency called the National Council for Persons with Disability. During his second term in office (May 2008), Kenya ratified
the United Nation Convention on the Rights of Persons with Disability.

MEANINGFUL PARTICIPATION

One fact that most people have glossed over is the allocation given to the National Council for Persons with Disabilities, compared to the contribution
made by PWDs to the social, political and economic spheres in the country. But then, in Kenya, studies to ascertain the actual contribution of disability
as a sector have not been conducted.

We must change the narrative of disability for us not to leave out this vibrant community in development and other spheres of life. Disability must be
viewed not as a burden but as a part of diversity, like any other. Disability is not about someone’s impairment but rather about a barrier – environment
and attitudinal – in front of this person to freely and meaningfully participate in the society.
By a Guest writer
HARUN M. HASSAN