Celebrating our super parents: Guest Author Odumbe Kute

It occurred to me yesterday after something I posted that prejudice and discrimination, whether conscious or sub-conscious is a very big deal in our lives.
I’ve been a disability and human rights activist for over 24 years and the one thing that rings true through all the work I’ve done around the world is
this. No amount of legislation, education and advocacy will ever cover for ignorance and prejudice about disability that is experienced every single day
by those affected.

It’s not just the general public. The worst offenders are family, close relatives and people who masquerade as friends. The thing is this. Most people
act the way they do, discriminate like they do, judge like they do, say really stupid and very hurtful things like they do, gossip like they do, show their
prejudice like they do because they’re afraid. You’d like to think that they’re just ignorant, but the truth is that they’re afraid. Afraid of what is
different, afraid of their own insecurities, afraid of how they would cope if they were ever in a situation where they would acquire a disability, give
birth to a child with a disability, have a spouse who acquires a disability or have to care for someone with a disability.

They go around calling themselves “normal”, whatever the hell that is. Here’s a wake up call. At least 1 of every 5 people in the world has a disability
of some sort, most of them hidden and not visible to people. It could be mental health, it could be chronic back pain, it could be sickle cell, it could
be a neurological condition ranging from autism to ADHD, it could be any number of debilitating conditions that people are shit scared to talk about for
fear that they might get labelled or judged. They refuse to look at it as a disability. They only choose to consider disability as a physical and medical
thing.

I haven’t even begun to talk about the hundreds of thousands of parents who have a differently abled child. Our society is brutal. Take the mothers of
kids with a disability from autism to CP, from physical to sensory disabilities. Those who stay in relationships and marriages after giving birth to a
differently abled child are considered the lucky ones. But are they really? Most mothers of children with a disability are single because they’ve been
abandoned at the traffic lights. They’ve been ostracized and become outcasts in their own families, in their marital families, amongst their friends and
relatives. They are seen as vessels of witchcraft, accused of bringing forth defective offspring that sully the gene pool of the family. They not only
have to deal with the challenges their child or children face, they are also as individuals, totally discriminated against and judged for every move they
make.

Let me tell you something about these women. They are amazing. They are Ninjas. They are super women, most of whom have to give up their entire lives,
their hopes and dreams and they sacrifice everything to give their differently abled children the best chance they have in life. They live isolated lives
because of the open and mostly hidden discrimination they face by people closest to them. But the one thing that will never be taken away from them is
their resolve, unconditional love, determination and sheer stubbornness in not giving up their default role as primary care givers to their children.

Most if not all these women go through hell every single day to make sure that their children have the best they can have in life, despite their individual
means. Some can hustle and get a shilling here and there, some don’t have that opportunity. Even for families who would ordinarily be financially stable,
the cost of therapy, medication, education, nutrition – you name it, is capable of bringing them to their knees. Some of these women cry themselves to
sleep every single night praying to their God and asking why he or she has forsaken them. And yet, the next morning, they wake up and do it all over again.

I submit to you that you “normal” people as you call yourselves; you people who have perfect lives that allow you to pass judgement over those who have
a different life; you people who stare and shake your head in disgust at a mother whose autistic child is having a melt-down in a supermarket and saying
that “what is wrong with that mother, her child is spoilt”; you people who have the luxury of not knowing the pain of a mother with a non-verbal autistic
child who is in unbearable pain and distress and unable to express themselves; you people who judge and come out with ignorant and stupid comments like
“that one was bewitched”, “that one’s dowry wasn’t paid and that’s why they have a disabled child”, “that one must have done something in a previous life”
– I submit to you that whichever God you pray to is kind enough to have spared you and gave you the right to be ignorant and stupid. Because if you were
ever in the situation that others are in, society has to be lucky that your not one of the ones who will be able to cope with the burden and responsibility
of caring for and loving someone who is different. Pray to that God of yours to never put you in a situation that you become disabled, a spouse or child
of yours becomes disabled, or you give birth to a child with a disability.

Why have I written this post you may ask. It’s because of the sheer amount of in-box messages I’ve got from parents of children with a disability, mostly
those on the autism spectrum, who were absolutely furious that I had to explain that my son is autistic to parents that commented on my post and took the
“your child is bloody spoilt” view. There is a parallel here to real life where the constant need to explain to those who are discriminatory and prejudicial
has become tedious for them and enough is enough.

Let me conclude with a simple example. A couple of weeks ago, a distressed mother on one of the support groups posted a question asking what they can give
their autistic child to calm them down when she has guests. Let me first say, many kids on the autism spectrum will be on medication, and this should only
be for their benefit and if it improves their development. But the thought of having to medicate your autistic child to make it easier for guests? I was
like – Fuck that. The only intervention needed is to bitch slap those guests out of your house. If your own guests cannot come to terms with the fact that
your child is autistic, they have absolutely no right to be guests in your home, let alone friends.

Inside the Kenyan disability corridors of power Author Mugambi Paul

Over the past few years, the discourse agenda of many disabled Kenyans has been dominated by service delivery and public participation debate] Mugambi 2017] this is because both incredibly important issues. But amid these dominating subjects, have the voices of disabled Kenyans been hard?
Has Kenya improved its level of inclusiveness?
Globally, persons with disabilities are estimated to represent 15 per cent of the world’s population, but in many developing nations this percentage
can be significantly higher] world report 2011 UN enable 2011].
this is to say, population of 1.3 billion, disabled persons constitute an emerging market the size of China. Their Friends and Family add another 2.4 billion potential consumers who act on their emotional connection to PWD] Ilo 2017].
Together, PWD control over $8 trillion in annual disposable income] ILO 2016].
The aging Boomer population is adding to the number of the disabled daily. As Boomers’ physical realities change, their need and desire to remain active in society dovetails with the demands of PWD. This group controls a larger share of the national wealth than any previous generation. Does Kenya government know this?
Just like many developing nations Kenya is on automobile settings on matters disability inclusion.
Most public policies are well woven but poorly executed. This is quite evidenced by the rare and sometimes absence seen in leadership and decision-making roles, the visibility in
popular culture and media are low, absence of disabled representation in key policy decision organs and stakeholders, and recognition of the work as thought leaders and influencers is almost non-existent. What has been happening?
The Kenyan government has strongly concentrated on developing policies geared towards social safety nets. In other words, the Kenya government sees disabled persons as people who need care and do not deserve to contribute to the economy.
Debatably, if the Kenyan government could turn the coin, they would gain more tax collection from this single largest minority in Kenya.
This can be achieved once the government realizes and focusses on effective, first service and maximization of social assets] Whiteford 2018].
How will Kenya government meet the sustainable development goals 2030?
How will the vision 2030 be achieved?
How will the big 4 agenda be achieved?
The reality is disabled Kenyans have been left behind.
This has led to artist and disability activist to start to compose or entertain with the song “do not live us behind”
As evidenced in twitter tags and music.
Moreover, The work of the disability rights
movement often consists of them highlighting their absence from the public domain.
In other words, most regulations and legislation on disability are still shelved in the cabinet. this has led to continuous charity model of delivery of service with out clear roadmap towards right based approach. This is affirmed by the implementation of education policy practises etc
Needless to say, its popular for public and private organisations to claim that they are being inclusive, yet retention rates remain low for disabled people in most organisations, with very
few moving into positions of leadership or responsibility.

I observe, A key factor in understanding inclusion is that it lies in the eye of the beholder. Many organisations have good intentions on inclusion, yet their staff
members from minority groups don’t feel comfortable and leave within a short period. For other organisations inclusion is a reality, so long as everyone
fits in and conforms to company culture] eddy robber 1988].

It’s very easy to say you are being inclusive, it’s another matter to be viewed as being so by those who are the target for being included. I don’t want to sound like a broken glass “why should someone claim his or her organization, yet a disabled person can’t access a toilet?”
According to my findings Most people mean
well, but they forget their unconscious behaviours. Very few people are comfortable with stepping back to allow a person from a minority group (like a
disabled person) to take an opportunity over themselves. Even fewer seem comfortable with a disabled person being their supervisor.
Could this be one of the reasons of the low rate employment recorded by Kenyan public service report
in 2015?
There are those who consider inclusion to be not “seeing” a person’s difference. This isn’t inclusion, its assimilation.
There isn’t much point in having disabled employees to your team if they aren’t valued for their contribution. This seems like an unnecessary thing
to say, yet social media has heard many stories about disabled staff who are never sent the documents in a format they can read
and work on, or aren’t given time to hear what is happening via their interpreter, and even highly experienced employees who are never given the opportunity
to speak and share their views. They are, quite literally, token appointments.
As a public policy scholar and with lived experience on disability, I affirm that the focus must shift from charity model and have accommodation to a plan focused on specific actions to attract customers and talent in disabled persons markets.
Even the available market opportunities for the disabled are being snatched under our noses.
Why aren’t we represented in many government bodies?
Who is supposed to audit the leadership gaps in the disability sector?

All in all, many disabled people work in invisible ways, shifting ground from within existing business and government structures. This work is just as important, just
as necessary, as the work of those who use the public domain to challenge assumptions and perspectives on disabled people. Internal institutional barriers
need to be addressed as much as social assumptions and social policy. Without taking our place as 15% of Kenyan employment and leadership we won’t be in a position to
challenge the ableist structural barriers which deny an equitable disabled presence across the public and private domains.

The views expressed here are for the author and do not represent any agency or organization.
Mugambi Paul is a public policy, diversity, inclusion and sustainability expert.

Should the disabled Kenyans stop be being in Automobile state? Author Mugambi Paul

Majority of Kenyans still see disabled persons as objects of pity. I believe with a collective paradigm shift of mindset we can do it [UNDP 2018]. With the new decade we can stand up and say no to discrimination and harassment of disabled persons. [UN enable 2019]
needless to say, as a totally blind person myself, I am all too familiar with such dehumanizing treatment. Often disabled individuals are treated differently, simply because we look, act, move or communicate differently. But should our differences, stemming from disabilities that we did not choose, be an excuse or justification for others to treat us as lesser individuals?
Unfortunately, many of us, the disabled Africans keep silent as this evil is perpetuated.
This is done by either family members, friends, employers and even in the public spaces.
In liberal democracies, citizens have the right to equal treatment under the law, which means that governments should not differentiate among people without good reason to do so. This is known as the principle of non-discrimination.
That’s because true equality requires a government to actually dismantle structures that perpetuate group disadvantage, either by providing preferential treatment or special protection to those on the wrong side of invisible barriers.
During my tenure as a student leader at Kenyatta university we pushed the policy agenda for affirmative action in university admissions for students with disabilities.
although we din’t get to enjoy the fruits of our advocacy.
Am grateful that the future generation of students with disabilities from 2010 din’t have to pay the price. there were great lessons.
Search as not everyone understand the journey for social justice.
Secondly as a leader you have to sacrifice for the people you lead.
camping at Professor Jude Ong’ong’a and professor Katana DVC academics and registrar academics respectively, was the order of the day.
This was to ensure no disabled person misses the exam card.
With this not withstanding the employers in both public and private sectors in Kenya need to borrow a leaf.
None of these preferential treatment policies are a magic solution for ending group discrimination and segregation, but without affirmative action policy the number of students with disabilities in both public and private universities would be far less than they are today.

On the other hand, In Kenya we have lots of disability awareness campaigns which have highly been of great improvement in the area of advocacy.
In other words, at list the mainstreaming media and social media in Kenya has highly contributed to the improved changes not like when we were starting fighting for disability space.
Additionally, we used to be chased like wild dogs when we approached media gates and other public spaces as we sort for services.
It seemed all along Blind persons were associated with begging thus the maltreatment.
Thanks to the UNCRPD the tide has really changed though we still have a long way to realize the dreams of our forefathers like EDDY Robert of the famous quote “Disability is a club.”
The reality check on Kenya is that we have adopted a more contemporary position on disabilities with accompanying policies and legislation, the general population remains rooted in the medical/charity model of disability.
I can site many examples of how Kenyans see the disabled as objects of pity who require sympathy, help or fixing. These interactions dehumanize and segregate PWDs. When one lives solely in a world of handouts and tokenistic gestures of goodwill promoted by corporate social responsibility initiatives, no dignity is earned, nor will any respect be gained.
For instance,
as a Blind artist and also a professional diversity and inclusion expert many a times people want to pay less for my works in comparison with non-disabled persons [Riayan 2019].
Sometimes with out blinking they demand to be offered service for free.
You really wonder if a blind artist and consultant uses free energy and free provision of his or her needs in his or her life.
Another example is the corporate who allege to organize support for assistive devices or marathons. Do these events actually sustain the disabled persons? Do the activities benefit a few individuals with disabilities and then sing Hosana?
I vividly remember how a vision impaired was almost being lynched at a Muhindi shop in town. This incident happens when he was checking the prices of bags and shoes.
The owner thought the vision impaired individual was a thief.
As long as the disabled are viewed as lesser or alien, dehumanizing incidents like the one we experienced at the media gates, will continue to be a common occurrence. Many incidences of disability-related harassment and discrimination have gone, and will continue to go, unchallenged. Despite protective legislation, sadly, little can be done to address the dignity that has been willfully trampled upon.
As a public policy scholar, this leaves me to conclude that decency and respect for a fellow human being cannot be regulated through legislation alone.
I recognize and appreciate that my views on such matters are not
widely shared by everyone in disability movement nor in our society. I acknowledge
that there are many traditions in our society which reflect different
experiences and perspectives than my own. All the same, I am proud to be
guided by a strong code of conduct that embraces diversity with respect for
divergent differences of opinion, beliefs, identities, and other
characteristics. What I stand for demonstrates that as a blind person am from a diverse cross section of society.
As a global citizen who happens to be blind, I have had the privilege of travelling to many different countries. Of the many that I have visited, Australia and Israel stood out the most. Perhaps due to their experiences and effective implementation of the disability policies.
. In my many visits, I have yet to be discriminated against. I have been treated not only with dignity but have always been offered help respectfully
when needed.

The views expressed here are for the author and do not represent any agency or organization.
Mugambi Paul is a public policy, diversity, inclusion and sustainability expert.

Why the Kenya Revenue Authority should partake responsibility of tax exemption for the disabled Kenyans!

During the past 3 decades in Kenya there have been numerous changes in our society with respect to the management and treatment of people with disabilities.
Of course, there ar numerous success stories of actual improved disability mainstreaming.
How did the changes occur?
Many legislative and societal changes have taken place for instance, the disability act of 2003, the UNCRPD 2006 and the 2010 constitution and several disability related regulations. Furthermore, these gains have been necessitated by the lobbing and advocacy by disabled persons and their organizations.
On the other hand, Disability mainstreaming and work to end discrimination against disabled persons have been on both government and non-state actors’ agendas for decades. Why is disability mainstreaming still important?
Some of us feel that “everyone” in government and non-state actors who include development and human rights organisations are well aware of the issues. But the truth is that in organisations without
any explicit focus on disability mainstreaming or disability social justice, the levels of awareness for disability-based discrimination (and the need to end it) tend to be uneven.
Am not surprised by the inaccessible built environment, inaccessible information or the negative attitudes which still exist among the Kenyan society.

Efforts to promote disability equality remain limited and often isolated. Some would prefer to drop “disability” altogether, busy as they feel with all those other
issues that must be “mainstreamed” – good governance, environmental protection, HIV/AIDS prevention, “you name it!”

most government and private entities normally pass on the back when dealing with disability matters!
I opine that ignorance in the Kenyan society is very expensive for disabled persons.
Why should and institution require permission to offer disabled person a service?

As citizens we do not require permission to get a passport, when one has Malaria a disabled person doesn’t require permission.
Why does Kenya revenue authority run away from its responsibilities?
As long as one has uploaded the right documentation there is no need of putting more barrier for the disabled persons.
Why are policy makers silent on this injustice?
Most top government policy makers and stakeholders have done benchmarking of disability services in other countries and they know how good and proper systems work for the people.
Why are they not actualizing simple and impactful solutions to the disabled persons?

. But there are at least five reasons why “disability mainstreaming” must continue:
list of 5 items
1. Organisations that are committed to universal human rights have a responsibility to ensure their work respects and promotes human rights. Disabled rights
are human rights, enshrined in widely accepted international treaties as the Convention on the rights of persons with disabilities UNCRPD 2006.

Any rights-based approach that neglects disabled persons rights is inadequate.

2. International movements and campaigns rally large numbers of disabled people. Disabled persons make the largest minority group in the world

if government institutions who are the planners, implementers and evaluators ignore disabled interests and needs, and refrain from
engaging disabled persons as interlocutors, collaborators and allies.
They will never get it right!
3. Many development and human rights agencies are into education and campaigning – i.e., they attempt to spread ideas around, and to mobilise others to
join them in their cause. The messages they convey, implicitly or explicitly,
influence people’s minds: research has shown that campaigning can reinforce or weaken people’s value systems – broadly speaking, what they consider to
be “good” or “bad”, “right” or “wrong”. (See for example the gender mainstreaming angle.
Hence, it is important to avoid reinforcing values that condone discrimination and other violations against disabled persons
which would be in stark contradiction with the development and human rights goals most of us defend.
The disability organizations need to take lead in voicing what needs to be don on tax related concerns.
Disabled persons should not just be raising concerns on the social media but take the demands to the Kenya revenue authority.
The Kenya revenue authority need to work along side disabled persons in order to ensure smooth and faster process is achieved.
4. disability -based violence is not only one of the most pervasive human rights violations, it also jeopardises development. For example, large numbers of disabled persons have experienced delayed service delivery due to the bureaucratic processes. For instance, delayed in tax exemption renewal, with
dire consequences for their physical well-being, their mental health and their social status. Getting tax exemption is right, but y risk their
lives because of high cost of transport, psychological wellbeing. The Kenya revenue authority should know that most disabled persons are unemployed and for those who do not get access to the service
are likely to feel abused, something is deeply wrong.
Additionally, the Kenya economy is highly affected by wastage of hours on the road.
The tax exemption should have been simplified through decentralization of Kenya revenue authority services at the county.
In other words, if the digitalization process ways actualized the staff at Kenya revenue authority would be able to automatically issue exemption certificates without delay.
The disability mainstreaming focal point person at Kenya revenue has to actualize the dreams of disabled persons by ensuring the system works beyond himself or herself.
Are there government institutions, private sectors who have been given tax relief by the Kenya revenue authority for promoting disability employment and improving access for disabled persons in Kenya?
5. In terms of efficiency, any organisation has a responsibility to serve the disable persons who need their service.
Disabled persons should not be treated as second class citizen in government services.
Siting an example in 2019 May the Kenyan government in collaboration with world bank launched the braille version of the 2030 vision which in essence non blind persons read a decade ago. Is this fair?
The Kenyan policy makers need to stop the mancantile policy process and adapt solution-oriented policy and procedures.

The views expressed here are for the author and do not represent any agency or organization.
Mugambi Paul is a public policy and diversity and inclusion expert.

Scientists Discover How Blind People Know So Much About Appearances guest author Sarah Sloat

The philosopher John Locke, who believed that true knowledge of the world could only stem from sensory experiences, thought that blind individuals could never understand the concepts of light and color. Locke, it turns out, was wrong. In a recent PNAS study, blind people demonstrate that they do understand what sighted people process through vision, proving that “visual” ideas don’t actually require sight.
In the study published Tuesday, scientists demonstrated how blind people make visual sense of what they cannot see. While previous studies suggested that the most efficient way for a blind person to know that, say, a flamingo is pink, is to memorize that fact, this study demonstrates that blind people instead look at the world like scientists and make sense of the visual world through a catalogue of clues.
“First-person experience isn’t the only way to develop a rich understanding of the world around us,” co-author and Johns Hopkins doctoral candidate Judy Kim explains. “People often have the intuition that we can’t know what we can’t see.”
This intuition is wrong, as Kim and her colleagues showed by testing 20 blind and 20 sighted adults, all around 30 years old, about their knowledge of animal appearances. The participants were asked to order a variety of animals by size and height and to sort the animals into groups based on shape, skin texture, and color. They were also presented with a group of animals and asked which one was not like the others.
The study design.
In most cases, the sighted and blind people performed equally well on the test. They sorted the animals in predominantly the same way, and both agreed on which physical features comprised the predominant description of each group of animals. For example, both blind and sighted people described dolphins and sharks to be of similar shape.
What the two groups disagreed about the most was, strangely, the factor that the researchers hypothesized would be the most agreed upon: Color. Sighted participants sometimes had trouble describing the shape of an animal, but they always readily provided its color. Blind people did not. This outcome refuted the “learn-by-description” hypothesis, which posits that blind people learn about objects by hearing the way other people describe them. If this were the case, then the blind participants should have been able to identify color easily, since sighted people seem to always include color in their descriptions.
But color is what blind individuals were least able to identify. And so, the researchers argue that the “learn-by-description” hypothesis must be incorrect and that blind people must gather visual information in a different way: By deducing it from existing knowledge about an object and details related to it.
“In the absence of direct sensory access, knowledge of appearance is acquired primarily through interface, rather than through memorization of verbally stipulated facts,” the scientists write.
How would you describe “pink” without having seen pink?
In other words, blind people take the scientific approach and infer appearances through other properties like taxonomy and habitat. This strategy works well for features like shape and textures; for example, birds have feathers and wings, so it’s implied that this holds true across bird species. Color is less easy to infer. Since there are a lot of animals that are the same color, it’s hard to deduce that, say, bears and ravens are black, based on the other things you know about animals.
But color inaccuracies aside, the research proves what blind people already know: You can have a rich and accurate sense of the world without actually seeing it.
And sometimes, the approach blind people take actually helps them be more accurate. Here, 55 percent of the blind participants and 20 percent of the sighted participants said that sharks have scales; the majority of that group said they have skin. In reality, sharks have fine scales — they are just difficult to see.
Abstract:
How does first-person sensory experience contribute to knowledge? Contrary to the suppositions of early empiricist philosophers, people who are born blind know about phenomena that cannot be perceived directly, such as color and light. Exactly what is learned and how remains an open question. We compared knowledge of animal appearance across congenitally blind (n = 20) and sighted individuals (two groups, n = 20 and n = 35) using a battery of tasks, including ordering (size and height), sorting (shape, skin texture, and color), odd-one-out (shape), and feature choice (texture). On all tested dimensions apart from color, sighted and blind individuals showed substantial albeit imperfect agreement, suggesting that linguistic communication and visual perception convey partially redundant appearance information. To test the hypothesis that blind individuals learn about appearance primarily by remembering sighted people’s descriptions of what they see (e.g., “elephants are gray”), we measured verbalizability of animal shape, texture, and color in the sighted. Contrary to the learn-from-description hypothesis, blind and sighted groups disagreed most about the appearance dimension that was easiest for sighted people to verbalize: color. Analysis of disagreement patterns across all tasks suggest that blind individuals infer physical features from non-appearance properties of animals such as folk taxonomy and habitat (e.g., bats are textured like mammals but shaped like birds). These findings suggest that in the absence of sensory access, structured appearance knowledge is acquired through inference from ontological kind.

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.

My third eye on Kenya’s disability movement

It has been argued from different quarters that the attitude of entitlement without responsibility has contributed to apathy among persons with Disabilities.
Kenyan persons with Disabilities should be encouraged to become proactive in ensuring good governance practices and use their creativity to ensure that they find their rightful
space in policy and decision making.
Failure to do this will mean that they have accepted to continually be marginalised.
Accountability is critical in ensuring that political leaders and all duty bearers honour their commitments and shows how different programme actions and
investment of public funds translate into tangible results and long-term outcomes that directly benefit persons with Disabilities . Accountability mechanisms should allow for grievances to be voiced and remedies provided and, as a responsive function, should help to improve how policy
or service delivery can be adjusted to make it more effective.
Efforts should be made to build capacity for persons with Disabilities to claim their rights and engage as active citizens.

An effective accountability mechanism is one that has the ability to transparently show the linkages between national and county levels with strong feedback
information loops.

This accurate and timely information has the potential to help in supporting national and county recommendations, actions and approaches aimed at reaching
the goals that support persons with Disabilities meet their aspirations and live a prosperous life.

Working with persons with Disabilities , especially in complex processes like planning, budgeting and monitoring, is crucial if development policies are to be truly
relevant to those they are meant to serve.
Sometimes participation and collaboration becomes difficult when review processes are complex and hard to interpret.

Persons with Disabilities should demand leaders to provide information in alternative format that is interactive and language that they can understand. All this is enshrined in Kenyan constitution and the UNCRPD.

An environment in which feedback is shared should also be considered.

If possible it should be easy to access without necessarily incurring costs.

Political leaders can only be said to be accountable if they listen and respond to the needs of persons with Disabilities people in a clear manner, explain action taken to
rectify whatever recommendations made and a guarantee that it will not be repeated.

This can be through actions like legislative reforms, innovative planning processes and prioritised funds allocation.

In conclusion, non-discriminative feedback mechanisms and effective follow-up processes is a means of verifying that an effective accountability mechanism
is in place.
The Constitution of Kenya has already defined duties, responsibilities and rights, so what is critical is to create strong linkage and integration both
at national and county levels because decisions are made through a network of actors.
For instance in the recently held general elections the Disability community was duped by the independent electro commissionin many ways.
There were no braille ballots at all. To make matters worse 17 counties left out the nominees with disabilities and for the 30 counties that had still had anomalies. Its still gloomy for women with disabilities as history has shown us they are often left out by women with out disabilities as they champion the women agenda and more sore the 2 third gender rule.
Never the less its important to note at the high level UNCRPD forum in August 2015 Kenya nation proclaimed that they provide free legal service when the rights of persons with disabilities have been ignored plus they provided accessible ballot in 2013.
We are yet to see the steps in which the state law office takes this matter in to consideration.
The litmus test that Kenyan persons with Disabilities should use is whether political leaders have put accountability mechanisms and pathways in place that are inclusive,
accessible, collaborative and responsive clearly showing how they will be structured and work in practice.

NB The views expressed here do not represent any agency or organization they are based on 17 years experience as a disability practitioner and human rights defender.

Few Discrimination experiences at its best In Kenyan context

Every Day:

1) Store employees assuming we’re stupid:Go to the grocery
store, the movie theater, a store in the mall, a restaurant or any
public-type place that has
employees, and five times out of ten you’ll run into an employee who
will automatically assume you’re ill-equipped mentally because of an
obvious visual
disability.

2) buses and matatus passing us by:If you live in a big outscuts like
Umoja, Rwai, Gidhurai, eastlands chances are you’ve experienced buses and matatus
passing you by quite often. People with disabilities
constantly complain that buses pass them by when they’re out on the
road trying to hail a cab.
3) Stairs in public spaces.You go to grab a coffee or meet a friend
for lunch, visit some office but wait – you can’t get in. This is architecture
discrimination at its
finest and we encounter it every day. Despite the misguided notion
that certain buildings are grandfathered-in to the persons with
disability act and do not need to be accessible,
umm no, they do. Any public space must. crossing most roads for us is a night mare.

4) Doctors not really listening.Out of all the people we encounter
each day who may possibly discriminate against us, you’d think medical
personnel would
not be on the list, however doctors and nurses can be some of the most
discriminatory people when it comes to how they treat people with
disabilities.
some one asked my tribe mate when she was pregnant “which animal did
this to you” you can imagine how it sounds when spoken in swahili! 5)
Wheelchair “quotas.”“Sorry, no more wheelchairs allowed.” Concert
venues, airplanes, city buses, amusement park rides – quotas on how
many wheelchairs
are allowed in certain places are a reality of disabled life. They’re
instated for safety, but they’re also highly limiting, generally only
allowing a
half dozen people with disabilities or so into an event or two people
who use wheelchairs on a city bus.

6) Strangers pretending they don’t see us.Once in awhile you’ll run
into someone who’s not very pleasant. Maybe they’re budding in line in
front of you,
or avoiding your gaze when you’re looking for someone to help you grab
something from the shelf. These folks like to pretend they don’t see
us, thinking
it’s easier to do that than just interact with us.

7) People taking our parking spots.It happens all the time –
able-bodied individuals parking in disability parking spaces. The
convenience is just too
hard to deny. And while this is all fine and dandy when it’s in the
middle of the night and there’s no one else at the store, they
generally take our spots
in the daytime, especially the good ones that have extra room for our
ramps. some government offices have turned the unisex accessible
toilets to be stores.