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.

The Deep Crises in the Kenyan disability sector Author Mugambi Paul.

Kenya is a country faced ultimately by many challenges as a developing nation.
Issues of disabled persons seem to be hanging in the Kenyan movie of activities.
No one or any institution seems to understand how to handle the first pace changes taking place in the global disability sector.
The disability sector seems to be blaming each other for the failures and the inadequacies felt by the wanjikus with disabilities.
Issues ranging from lack of representation in the building bridge initiative, lack of adequate data from the Kenyan bureau of statistics to delayed
Service delivery.
Let me not dwell on the Corana virus.
As a public policy scholar let be engrain me to the importance of collecting desegregated
data for disabled. Persons.
According to standard media, the release of additional census data by the Kenya National Bureau of Statistics (KNBS) should be a wake-up call to policy makers in both the county and national governments. The numbers present valuable information on trends and patterns within the country’s demographic that should inform policy decisions and resource distribution
This was after the realise of the numbers byt the Kenya bureau of statistics. Unfortunately, for disabled person it was a bitter peal to take having lots of expectations.
The data presented seem to have reduced the numbers of persons with disabilities.
What happened?
The reality check indicates the lack of proper representation and lack of technical knowhow of disability data desegregation took place.
did the disability sector participate in the cycle of activities at the Kenya bureau of statistics?
The data released seems to be negative.
Reasons?
First application and training of the use of the Washington group of questioners was not properly conducted.
Secondly no pilot activity was done on how to collect disability desegregated data.
Thirdly the training of enumerators was a second thought.
Fourthly, were the organization of disabled persons involved in the process?

Facts for consideration:
It is well known. That
An estimated one billion people worldwide live with disabilities. Of the world’s poorest people, one in five live with disabilities.
Notable, in developing nations like Kenya conditions where we lack material resources as well as opportunities to exercise power, reach our full potential, and flourish in various aspects of life. (WHO and World Bank, 2011).
Globally, People with disabilities were not listed as a priority in the Millennium Development Goals. This is also true in the Kenyan context where disabled persons are not listed in the big 4 agenda. As a result, there is exclusion from many development initiatives, representing a lost opportunity to address the economic, educational, social, and health concerns of millions of the Kenyan’s most marginalized citizens (UN, 2011). In contrast, for the 2030 Agenda for Sustainable Development, United Nations member states pledged to leave no one behind, recognizing that development programming must be inclusive of people with disabilities.
Expected irreducible minimum:
To ensure disability-inclusive development, disability data must capture the degree to which society is inclusive in all aspects of life: work, school, family, transportation, and civic participation, inter alia. Disaggregating disability indicators will allow us to understand the quality of life of people with disabilities, towards developing programs and policies to address existing disparities.
Opportunity for Kenya disability movement:
Kenyan disability movement should stop board room meetings among themselves and join where the cake is being mashed and prepared.
At the Global Disability Summit in July 2018, the World Bank announced new commitments on disability desegregated data support to countries.
Specifically, the Bank pledged resources to strengthen disability data by scaling up disability data collection and use, guided by global standards and best practices.
This commitment is aligned with the World Bank’s October 2015 pledge to support the 78 poorest countries in conducting household surveys every three years. Regular household surveys are an excellent option for disability measurement, as they can be stratified to oversample people who are more likely to experience limited participation in society. In multi-topic household surveys, disability data can be collected along with other socioeconomic data, enabling a richer analysis of the experiences of people with disabilities. Finally, regular household survey programs can measure the change over time and space in key indicators such as the frequency of types of disability, severity of disability, quality of life, opportunities and participation of people with disabilities, and rehabilitation needs. For example, the recently launched 50×30 initiative may offer a good opportunity to collect disaggregated farm- and rural-related indicators by disability status
The Kenyan disability sector should stop ghetorization of disability issues and we shall realize real mainstreaming when we speak to where barriers exist.
It is encouraging that more disabled persons in the social media are demanding a specific census for persons with disabilities.
Weather this will be executed time will tell.
All in all, we need a model survey for disabled persons in order to have proper planning and ensure we get the Kenyan national cake.

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 disability sector should be the leader in employment of the disabled! . Author Mugambi Paul.

Many initiatives in Kenya are in place for advancing the rights of persons with disabilities.
Most of the initiatives are led by international bodies, government, disability persons organizations and also individuals with disabilities.
Like in many other areas, Kenya has put in place progressive policy and legal frameworks with the intention of improving lives of Persons with Disability
The question on the unemployment of disabled persons has not be answered.
Should we continue with the same old tricks of finding solutions?
Are there no innovative ways of enhancing employment of the disabled persons in Kenya?
When will we stop board room discussions and ensure the largest minority get at list 5 % of the constitution threshold of employment?
What are the outcome of the global commitments on inclusive work?
According to the KBS 67% of the disabled population lives in poverty (2.97 million people).
Should these alarming statistics ring the bell to policy makers?
Kenya has seen gazettement of directorship of boards in the recent past.
Additionally, jobs are being advertised left, right and centers,
How many disabled persons have been included?
As a public policy scholar, I opine that the design, development and Implementation of disability related policy and legal frameworks have been weak.
Am not surprised that we do not have a living disability policy since the draft came out in 2006.

In order to address the unemployment among the disabled the disability sector itself needs to internally examine itself and retrace the why discrimination and stigma is rampant.

I believe we all know Stigma and discrimination lead to humiliating stereotypes and prejudices.
My opinion is that the disability sector should be the first to lead the route towards reduction of unemployment among the disabled Kenyans.
This is because the disability sector understands better about the disabled Kenyans.
How we live in poverty, have limited opportunities for accessing education, health, suitable housing and limited employment opportunities.
Some of my suggestions ae radical in nature.
I believe disabled Kenyans want to be productive members of society. Sometimes the disability sector amazes me when they advertise positions while they have in their data base many qualified individuals with disabilities.
How many employees with disabilities are in this sector?

Its not much to ask for government and private sector to improve access to basic education, vocational training relevant to labour market needs and jobs suited to skills, interests and abilities, with adaptations as needed.
In addition, the disability sector should be quick to advocate for inclusive vocation and technical training where the government is pumping allot of resources at the constituency levels.
The disability sector should be the leader in dismantling other barriers like making the physical environment more accessible, providing information in a variety of formats, and challenging attitudes and mistaken assumptions about people with disabilities
In other words, the disability sector should lead by example by operationalizing these dreams.
My second recommendation is the disability sector should comprehensively take on board disabled persons in internship and progressively employ the disabled for positions based on performance and qualifications.
Through these the disability sector will enhance visibility and promote employment of individuals with disabilities.
The disability sector can use these great good practices I to preach to both public and private sector on employment of disabled persons.
All in all individuals with disabilities want to have a Productive and decent work which will enable them to realize their aspirations, improve their living conditions and participate more actively in society

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.

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.

Why the Disabled Kenyan man missed the Land comission job!

Disabled persons all over the world face surmountable challenges in accessing participation in all spheres of life.
Siting example of Kenya it has been a long struggle for advocacy of both individuals and institutions to recognize persons with disabilities.
Disabled persons are 15 per cent of the world’s population, that’s one billion people, and yet, they are significantly more unemployed and under-employed
As expected, the constitution of Kenya is clear on matters representation and appointments in the public and private sector.
As evidenced by Section 54(2) of the Kenya constitution 2010 requires the state to ensure that at least 5 % of the members of the public in elective
and appointive
bodies are persons with disabilities. The sustainable development goals (SDGs), to which Kenya is party, in target 8.5, the world hopes that by 2030 achieve
full and productive employment and decent work for all women and men, including for young people and persons with disabilities, and
equal pay for work of equal value. Despite existing domestic and global legal frameworks, access to the labor market remains a daunting challenge for
persons with disabilities. This may be attributed to accessibility related challenges, inadequate quality education stigma and lack of a comprehensive
strategy to empower and absorb persons with disabilities into the job market.
Additionally, disabled persons have been underemployed, and employers have immensely refused to adapt reasonable accommodation measures which could have enhanced the productivity of individuals with disabilities.
On the other hand, People with disabilities represent a significant untapped source of talent for employers and a market segment for businesses that includes not only the
person with a disability but their family members and friends. Businesses and employers are recognizing that disability inclusion in the workplace represents
a competitive advantage that has been overlooked for too long.
ILO 2005 in one of its studies stated clearly that with proper accesses and provision of reasonable accommodation disabled persons can stay for long in a particular job than the non-disabled counterparts thus high productivity and prophitability of the organizations
This reduces even the expenses of hiring new staff and reduces staff turnover.

Moreover, the situation is further aggravated by lack of an elaborate and sustainable
social security mechanism for this historically marginalized group.
The big question is what it shall take for the Kenyan government to effectively address the problem of accessibility and provision of reasonable accommodation to the labor market for persons
with disabilities?
The Kenyan 2018 public service disability mainstreaming policy articulates clearly the measures which all public entities should follow in promoting the welfare of disabled persons and promoting reasonable accommodation.
If all government entities adapt this approach all disabled persons in Kenya will stop lamentation.
Of course, this is
is the only sure way of granting persons with disabilities a chance to live an independent, dignified and respectable life.
The jury is out there, disabled persons are still hoping to see which government agency is executing the provisions of the constitution, UNCRPD, public service policy etc.

Unfortunately, this has not been the case for the most appointments in the recent past of Kenyan story.
For instance, after the expiry of the first land commission,
It was expected a new team will be brought on board.
Unfortunately, the disabled person who made it to the finals was not nominated to serve on the commission.
This is to show how Kenya has not recognized the importance of having a disabled commissioner.
To put it differently, disabled persons have been denied the opportunity of voicing the voice of the largest minority group.
Its not that the disabled persons don’t have concerns on the land matter but it is clear that disabled are the most disadvantaged on land matters.
Disabled persons have lost land to family, relatives and friends, they are also disinherited by the relatives, land taken away without their consent etc.
Regrettably, no human rights body nor the disability movement advocated for the disabled person to be taken on board. Even after the gazettement of the current list no one came to voice the agenda. Where is the so-called disability caucus group?
Why did the chairperson of the gender commission who doubled as the task force chair didn’t voice this discrepancy?
Will the disabled individuals be locked out of the upcoming IEBC commission job?
The jeury is out there.

For a thriving and leadership someone could have taken responsibility of this Agenda. pick me up!
Disable persons organization and disabled persons and allies need to rise up and advocate for better appointments and representation.
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.