Why the disabled Kenyans should stop word romancing in quest for inclusivity. Author Mugambi Paul

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Over the past few months, Kenya social media sites within the disability sector has been filled with romantic words of how we us disabled persons should be defined.
Many of the social media users argued for or against the statement “persons living with disability”
Putting my scholarly lenses, I will fall into the trap of using legal instrument.
This is evidently best settled by the clear definition which is quite elaborate in the UNCRPD.
It begs the question whether I live with my impairment or not. Does this really matter?
The pertinent response should be if as and individual or group we are receiving efficient, timely service delivery.
This matter of romantic wording should stop instantly and let focus the energies towards demanding for more improved service delivery in both public and private sectors.
As a matter of fact, the disabled in Kenya are too euphemistic and this clearly waters down the advocacy agenda.
As a public scholar and also a consumer of disability services have put the shoes and thus found to jot my reflections.
This is well informed by the virtue of Some discriminatory experiences
I have encountered within the Kenyan public and private service provision.
I observe there are allot of grey areas we need to focus.
For instance, accessible communication and information, transport provision for disabled persons, inclusive education, demand for employment opportunism etc.
I opine that the Kenyan disability sector has lost its way by being caught
up in politics and the self-interest of higher-ups. As [Peter 2019] affirms the disability sector can redeem itself.
Several reforms need to take place in order to assure and uphold the rightful place and a just society for the disabled in Kenya.
There is a plausible and workable solution
within reach to overcome many of the failures and inefficiencies of disability service provision, and these solutions should be grasped with two hands so that we
can turn this around.
For example, if a follow up response for last year’s open letter on my blog would have changed the narrative.

“Open letter to the Newly NCPWD chair” Mugambi Paul


to put it differently, disabled persons have solutions to the obstacles they face on a daily basis.
“we are the drivers of our destiny”
More importantly, Kenya made several global commitments in 2018.
This has seen several initiatives being pursued by government, international non-governmental organizations, private business sectors and disabled persons organizations.
According to my web-based research most entities in Kenya performed well in meeting their obligations but is this impact felt on the ground?
needless to say, the disabled persons in Kenya have a responsibility of accountability by asking.
Are these global commitments being implemented to achieve the said target population?
Are the global commitments made by Kenya in line with the Complies with its Obligations Under the CRPD?
Are tangible outcomes being experienced by disabled persons at the grassroots?
Success story
Moreover, beyond individual organizations’ progress against their commitments, there is evidence by ministry of labor in Kenya that Global disability commitments has had a wider impact in raising awareness, and increasing
prioritization, in relation to disability inclusion. For sure, disability inclusion as key to achieving the Sustainable Development Goals.
some of the ministry of labor success story include:
Launch of the National Action Plan on the implementation of the Global Disability Summit Commitments 2018
Development and an advocacy toolkit that will be used to strengthen dignity and respect for all.
Lastly, Establishment and launch of the Inter Agency Coordinating Committee to coordinate and monitor the implementation of the National Action Plan on the
implementation of the Global Disability Summit Commitments 2018. On the other hand, much needs to be done
by the consortiums in the non-governmental organizations.
most of them are still grappling with teething issues and set ups.
We hope in 2020 more research and global commitments outcomes will be felt on the ground.

According to June 2019 Kenya investment report and state social enterprise reports they do not have any reference to inclusivity aspect of disabled persons.
The report just mentions the term disability only in the reference of the social protection aspect of the Uwezo program.
This literally shows Kenya still has a long way towards getting proper participation of persons with disabilities and inclusive reporting.
All in all, the disabled a person and their organizations need to enhance the collaborative accountability mechanisms which will aid towards the realization of achieving the global commitments.
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.

Untold success story of the Cash transfer programme in Kenya Author Mugambi Paul

Rising inequality isn’t a new concern. Many countries in the global are facing this phenomenon.
Oliver Stone’s movie “Wall Street,”
with its portrayal of a rising plutocracy insisting that greed is good, was released in 1987. But politicians, intimidated by cries of “class warfare,”
have shied away from making a major issue out of the ever-growing gap between the rich and the rest.
The best argument for putting inequality on the back burner is the depressed state of the economy. Isn’t it
more important
to restore economic growth than to worry about how the gains from growth are distributed?
I will look at the social protection aspects in Kenya and how it has contributed to changing the lives of most vulnerable persons in the society.
Secondly, I will strive to highlight the misgivings of the global commitments.
To begin, the 2019 to 2020 Kenyan Budget raised the issue of implementing a Single Registry for all social protection programmes. This will improve the coordination of social
protection programmes, which have been highly fragmented leading to numerous inefficiencies. According to the social assistance project the ministry of labour and social services will highly improve the outcomes of the social protection programme by having the 3 cash transfer programmes in one registry. This is a great move which will reduce the flows experienced in the systems.
However, the Registry should not only create a data base of
beneficiaries from all programmes but should also track beneficiaries until they are able to graduate. As a public scholar I recommend the Ministry of labour and social services and its partners should develop A strategy for non-labour
constrained households who have the potential to graduate to entrepreneurship and gainful employment. This will help in eliminating increased dependency
on social safety nets.
Secondly, the government of Kenya has scaled up the uptake of the universal health cover though not much has been discussed on the inclusivity of disabled persons to this well intended programme.
However, Today, the risk of childbearing related deaths has become rare among Kenyans mothers. Infant deaths have also declined significantly, while more children
can now live beyond their fifth birthdays than before. Although non-communicable diseases are emerging and threatening the health of many people, the health
system has grown stronger and more resilient to be able to eliminate this threat. The county and national government need to enhance the human resource capacity in the health sector and reduce the cost of health by also adapting a single registry in both public and private hospitals which all the medics can access under privacy laws of the clients with out incurring extra charges as in the current situation. another aspect of promoting well being of citizens is the availability of water supply.
Scaling up urban projects to improve water and sanitation
The state of water and sanitation in Kenya is worryingly poor. Urban areas are prone to water borne diseases that break out almost every year. Recently,
Kenya experienced a Cholera outbreak that claimed more than 56 people, with the majority being Zin Nairobi.
is December 2019 Kirinyaga county is adding to the statistics.
Accordingly, the allocation to water and sanitation in the 2019 budget allocation was increased. in 2019. This is the highest level in five years, and though the nation has fiscal limitations, the allocation is justifiable to address water issues and
prevent disease outbreaks in the country. Despite the usual concerns on disbursements from the national treasury to the counties, the 2019 budget shows improvements, as 45% of the approved budget
was disbursed as of October 2019, compared to 2018 financial year. With such improvements, Kenya will be able to address its water and sanitation
problems in 2020.
On the other hand, the floods experienced in Kenya in November 2019 could have saved Kenyan millions of shillings if the ministry of water and irrigation had proper mechanism of conserving the rainwater.
Instead of the havoc caused and 152 lives lost we would have seen more water reservoirs being put in place.
The more challenging factor on this is that a dry spell will be kicking off and more request for food donation will take place as evidenced by the support by United states of America
https://www.nation.co.ke/news/Kenya-receives-Sh340m-food-aid-from-US/1056-5396952-egea2j/index.html

additionally, Social protection programmes have led to Kenyan households being able to afford more than one meal a day, achieve more diet diversity, afford more shoes
and clothes for their children, attain some level of education, and empower small scale farmers. However, recently there have been concerns among stakeholders
regarding the administration of these programmes, which the Government should aim to adequately address. These efforts should help reinstate donor confidence
in the administration of these programmes.
All in all, the government of Kenya has highly enhanced the development of well-crafted legal frameworks which now need to be executed for the benefit of the most marginalized and vulnerable members of our society.

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.

What the Blind and vision impaired Kenyans can learn from south Africa. Author Mugambi Paul

Blind SA (South Africa) is an organization of blinds for the blinds in
South Africa
as most of top functionaries are visually changed persons. Launched as the South African Blind Workers Organization in 1946 to help the blind in finding
careers of their choice, it was renamed as the
Blind SA
in 2004.

According to an estimate of the
World Health Organization
(WHO) about 15 percent of people in
South Africa
are living with disability out of which 60 percent are visually impaired. In absolute terms about 250,000 children in
South Africa
are blind or visually impaired for whom only about two dozen schools are available. The
Blind SA
is dedicated in developing
braille pages
to facilitate visually challenged persons particularly children and youths to learn and live a meaningful and productive life. Besides, it also conducts
sensitization programmes, skill training and placement facilities for the visually challenged persons.

In an interaction with Devdiscoruse, the CEO of
Blind SA,
Mr. Jace Nair tells us about the challenges for the blind people and his organization’s efforts to make their lives easier.

Q.1. What are the main areas of operation of your organization?

Nair: Empowering blind and partially sighted persons to live a meaningful and economic productive lifestyle is the main objective of Blind SA. We are primarily
engaged in advocacy which involves commenting on policy and legislation, access to ICT, access to financial services and banking, access to Education &
ECD, access to employment and
Economic Empowerment
(EE), access to government services such as health, social security, housing and public transport.

To achieve our objectives, we conduct self-representation, production of accessible publications in braille script, daisy and audio, training in braille
and orientation and mobility, entrepreneurial and small business development, placement, skills program and employment in the public and private sector.

Q.2. How, according to you, your organization is contributing to achieving any one or more SDGs?

Nair: The visually challenged people are among the most vulnerable groups in society across classes, genders and communities. We are dedicated for their
overall empowerment. In this way we are contributing to the achievement of several
sustainable development goals
(SDGs). They are No Poverty (SDG1), Zero Hunger (SDG2), Good Health and Well Being (SDG3), Quality Education (SDG 4), Gender Equality (SDG 5), Decent
Work and Economic Growth (SDG8), Reduced Inequalities (SDG 10), Peace, Justice and Strong Institutions (SDG16) and Partnerships for the Goals (SDG17).
This is achieved by the programmatic and advocacy initiatives.

Q.3. So far, what are the main achievements of your organization in line to the
SDGs
set up by the United Nations for the year 2030?

Nair: We have produced over 1.4 million
braille pages,
trained over 400 facilitators in braille, trained over 100 persons in orientation and mobility and trained 14 persons in small business development. Besides,
we also held 4 events for accessible, safe, affordable and integrated public transport for blinds in association with the SA’s national Department of transport,
four municipalities and Gauteng Province to create awareness for blind commuters and the use of the white cane.

Q.4. What are the recent initiatives of your organization has made in line to the SDGs?

Nair: Empowering blind and partially sighted people through programmatic initiatives are our prime focus. In the year 2018-19, we made a presentation and
conducted sensitization programs in 56 companies and four job placements. The beneficiaries of various categories include NSF project (88), Braille Training
(149), ETDP SETA (50), CoJ Projects (30), Study Bursary Project (55), World Read Aloud Day (14) and 645 learners.

Q.5. What is your strategy for further expansion of your organization?

Nair: We aspire to re-affiliate with the
African Union of the Blind,
World Blind Union
and Internal Council of the visually impaired. Besides, we are also working for a greater role in
SA Disability Alliance
and SA Braille Authority.

Q.6. Where do you want to see your organization by 2030?

Nair: By 20130, we aspire to emerge as a leading national disabled people organization in
South Africa
leading the mainstreaming of disability for blind and partially sighted persons.

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.

The future of poverty policy Five years of momentum must not go to waste Guest Author SHARON BESSELL

New ways of measuring and tackling poverty are making crucial progress, but the scale of the problem is large, and many challenges and negative trends remain. Addressing these will be crucial to ending poverty, Sharon Bessell writes.

In 2015, world leaders agreed to the Sustainable Development Goals. Goal 1 is to end poverty in all its forms everywhere. This marked a significant shift in global policy, refocusing poverty alleviation strategies from income alone to a far broader set of issues.

So how far have things come in the past five years as policymakers, service deliverers, and activists grapple with the challenge of ending poverty in all its forms everywhere? Three trends are worth considering as the new decade dawns.

First, in terms of global priorities, Goal 1 signals a welcome shift. There is no doubt that increasing incomes among the poor is critically important, and must remain a priority – both globally and within countries.

Equally, it is important to recognise that low income is not the only characteristic of poverty. The structural barriers that prevent individuals and social groups from moving out of poverty reflect deep-seated inequality and discrimination that are unlikely to be dismantled by a marginal increase in incomes.

Similarly, poor quality of health care, education, and other essential services available to many are the product of insufficient and unequal public spending and investment. Individuals need very large increases in their income to be able to buy higher quality services – and such purchases may never be possible for those who are excluded due to discrimination and stigma.

More on this:Mapping deprivation across lives
As the global definition of poverty has broadened to include dimensions beyond income, an important development, policymakers have improved their ability to measure multidimensional poverty.

The Individual Deprivation Measure is a powerful example of how poverty measurement is being rethought.

It allows decision-makers to include in their understanding of poverty access to and quality of essential services, its non-material dimensions, like voice and social relationships, and intersectional analysis that reveals which social groups are being left behind.

Central to new approaches is a recognition that poverty cannot continue to be measured at the level of the household. An important step forward came in 2016 when the World Bank initiated the Global Commission on Poverty, which stated that decomposition of household-level data is simply insufficient – poverty must be measured on an individual basis.

Debates about how to measure poverty are not simply a theoretical exercise with little practical relevance, they matter deeply and determine a response. When the multidimensional nature of poverty is in the picture, policymakers are better able to identify and respond to structural barriers, deeply entrenched discrimination, and services that continually fail the poor.

When poverty is measured at the individual level, policy can move beyond the already discredited idea that resources are shared equally within a household. Decision-makers can better identify which social groups are most disadvantaged and why. Governments and service providers are able to respond on the basis of evidence.

The second trend occurring globally is a steady decline in extreme poverty – measured as those living on less than $1.25 prior to 2015, now revised upwards to those living on less than $1.90.

In 1990, 36 per cent of the world’s population lived in extreme poverty. By 2010, that figure decreased to 16 per cent, and by 2015 was at 10 per cent. At the end of 2018, the World Bank observed that extreme poverty was at its lowest level ever.

More on this:Poverty, homelessness, and welfare
This is a remarkable achievement. However, two issues must be kept in mind. First, the international cut-off for extreme poverty is very low. If it were increased to just $3.20, one-quarter of the world’s population would be living in poverty. A little further – to $5.50 – and 46 per cent of the world’s population would be defined as poor.

While great progress has been made, we cannot afford to be sanguine – the misery of poverty still affects half of all people around the globe.

In many countries, those who remain in poverty are those who are hardest to reach. For example, in Indonesia, poverty based on the national poverty line dropped below 10 per cent in 2019.

While the significance of this milestone should not be underestimated, in terms of numbers, 26 million people remain below the very low national poverty line.

For Indonesia, the greatest challenge remains. The most severely marginalised people – those hardest to identify and hardest to reach – are yet to move out of poverty. This is reflected across the region and the world.

The third global trend provides a less optimistic story – and one likely to undermine the achievements of recent years. It is a story in two parts.

First, the record of some of the wealthiest countries in addressing poverty in all its forms over the past five years is dismal.

In Australia for example, one in six children live in income poverty. In the United Kingdom, where government spending on children has fallen dramatically in recent years, child poverty is at 30 per cent. The apparent preparedness of wealthy countries to abandon efforts to end poverty is alarming.

It is even more so considering the apathy of these countries towards the global shift to assessing multidimensional poverty, rather than income alone, a change that has generally resulted in poverty measurements moving up to reflect reality. If the multidimensional nature of poverty in these countries was measured and included the stigma and shame that is created by unjust policies, these figures would be far worse.

The second part of this story is the failure of leaders to seriously address the climate emergency. Without action, new groups will be plunged into poverty and achievements in reducing global poverty could go into reverse.

Over the past five years, there have been positive trends in addressing poverty around the world. The adoption of ending poverty as a global goal, the shift towards multidimensionality in both assessments of and responses to poverty, the recognition that poverty must be assessed at the individual level, and the continuing downward trend in extreme income poverty globally are all great achievements.

However, they are countered by deeply disturbing trends, especially in wealthy countries, and the link between the climate emergency and poverty. These challenges must be addressed, or the last five years of progress may go to waste. If they are not addressed, it will amount to simply abandoning the most vulnerable to their fates, and settling for a world that is divided and deeply unjust.

Sharon Bessell
Dr Sharon Bessell is the Director of the Children’s Policy Centre in Crawford School of Public Policy, and the ANU lead on the Individual Deprivation Measure Project.

A new treatment promises to make little people taller. Is it an insult to ‘dwarf pride’? Guest author Damian Garde

Scientists have come up with a drug, injected once a day, that appears to make children’s bones grow. To many, it’s a wondrous invention that could improve
the lives of thousands of people with dwarfism. To others, it’s a profit-driven solution in search of a problem, one that could unravel decades of hard-won
respect for an entire community.

In the middle are families, doctors, and a pharmaceutical company, all dealing with a philosophically fraught question: Is it ethical to make a little
person taller?

The most common cause of dwarfism is known as achondroplasia. People with the condition, caused by a rare genetic mutation, have shorter limbs and shorter
stature than those without it, and they deal with a lifetime of skeletal issues that often require a battery of corrective surgeries. For years a U.S. company called BioMarin Pharmaceutical (
BMRN)
has been developing a drug that targets the genetic roots of achondroplasia, a mutation that stops cartilage from turning into bone. The goal, according
to the company, is to prevent the medical complications associated with achondroplasia, which include sleep apnea, hearing loss, and spinal problems.

But proving the drug’s long-term skeletal benefits would require a decades-long study, which is an expensive and, to BioMarin, impractical proposition.
Instead, the company is measuring the the most immediate byproduct of bone growth: height.

And that’s where the philosophical schism begins.

For thousands of little people, the short stature that comes with achondroplasia is not a disability in need of treatment but a difference to be celebrated.
Organizations like Little People of America have spent years dispelling stereotypes, advocating for fairness, and pointing out that having achondroplasia
doesn’t preclude anyone from a fulfilling life. Dwarf pride means flourishing because of one’s body, not in spite of it.

Through that lens, the drug looks to some like a threat of erasure, a so-called cure for people who are not sick. Furthermore, about 80% of babies with
achondroplasia are born to parents of average height. That means, if the drug goes on to win Food and Drug Administration approval, the decision of whether
to give it to a child would often be made by people with no exposure to little people culture, who know nothing of dwarf pride.

“People feel like this is an effort to eliminate the dwarfism community,” said Becky Curran Kekula, a disability advocate and motivational speaker who
was born with achondroplasia. “Some say this is going to help things get better, but how could someone know?”

There is no consensus. Where some little people see the drug, called vosoritide, as an affront to their identity, others wish it had existed when they
were children. Parents, too, speak of it either as a source of hope or a danger to their child’s sense of self-worth. Online discussions of the issue often
grow heated. Some people contacted by STAT declined to speak on the record for fear of inciting a backlash.

There is, however, little dispute over what the future holds. Vosoritide is on track to win FDA approval, leaving all parties to prepare for a world in
which height is a matter of choice.

BioMarin’s work in dwarfism starts with the genetics.

In 1994, scientists at the University of California in Irvine traced achondroplasia to
a gene called FGFR3,
which regulates bone growth. In people with the condition, they discovered, that gene is mutated, impairing the natural process of turning cartilage into
bone.

About seven years later, researchers at Kyoto University in Japan demonstrated that a protein in the body, long studied for its role in heart function,

seemed to reverse the effects
of that broken gene. The natural version of that protein, called C-type natriuretic peptide, gets cleared out of the body in about a minute, making it
useless as a medicine. But, over about a decade of scientific trial and error, BioMarin came up with an analog called CNP39, a longer-lasting version that
it believed could counteract the genetic mutation and restore healthy bone growth. The result was vosoritide.

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So far, the drug looks like it works. In a clinical trial enrolling 35 children with achondroplasia, the highest doses of vosoritide helped kids reach
growth milestones 50% faster than they did without treatment. Compared to baseline, those children grew roughly two extra centimeters each year, bringing
them nearly in line with their average-heighted peers. The side effects were mostly mild, including irritation at the injection site, low blood pressure,
and fever. The results were published
in the New England Journal of Medicine
last summer.

BioMarin started a larger, placebo-controlled study in 2016, enrolling more than 100 children between 5 and 14 in a trial expected to conclude later this
year. If it’s positive, the company will submit the results to the FDA in hopes of winning approval. As before, the primary goal is increasing growth.

“But aspirationally, what we’re all hoping to see is not only do we increase height but we improve the quality of life and the clinical morbidities that
these patients suffer from,” said Dr. Jonathan Day, BioMarin’s executive medical director.

Achondroplasia affects the growth of all but a few bones in the body, not just the ones associated with height. That means vosoritide’s benefits, while
most observable in terms of height, would in theory translate to the spine, where achondroplasia’s most dangerous side effects take root.

That will take years to prove, Day acknowledged. He has heard the concerns about the emphasis on height, about the existential implications for adult little
people. But vosoritide, he argued, presents the best chance of a better future for children with achondroplasia.

“We can’t make a drug that enhances skeletal growth but doesn’t make you taller,” Day said. “It just doesn’t work that way.”

“People feel like this is an effort to eliminate the dwarfism community. Some say this is going to help things get better, but how could someone know?”

BECKY CURRAN KEKULA, DISABILITY ADVOCATE AND MOTIVATIONAL SPEAKER WHO WAS BORN WITH ACHONDROPLASIA

Little People of America, with a membership of around 8,000, spent years keeping BioMarin at a distance. Founded in 1957, the group’s stated mission is
to provide a safe, welcoming community for all little people, no matter their opinions on controversial issues like dwarf tossing and limb-lengthening
surgery. When the group learned about vosoritide in 2012, it seemed like yet another matter of personal choice, something on which members could disagree
but from which the group would officially abstain.

But LPA’s commitment to neutrality came dramatically into question earlier this year, when the group’s board invited representatives from BioMarin to the
organization’s annual conference and, most alarming to some members, accepted a $130,000 donation from the company.

Many members only learned of the arrangement when they saw the drug company’s logo on a list of LPA sponsors on conference collateral. That led to an outpouring
of concern and condemnation on
LPA’s Facebook (
FB)
page. At the conference, held in San Francisco in July, the group convened an emergency town hall meeting, where the board sat in a hotel ballroom and
listened to outrage and confusion from its members. Footage of that meeting was also posted to the Facebook page.

“Seeing that sponsorship on the conference booklet was like a slap in my face,” LPA member Monique Conley told the board. “We didn’t need their money,”
she said to applause. “We’re not these poor charity cases. We have lives. We love our lives.”

Regardless of LPA’s intentions, its acceptance of money from BioMarin sent the message to some members that the group had co-signed the development of
vosoritide, a notion many find abhorrent, said Olga Marohnic, chairwoman of the organization’s Hispanic affairs committee.

“There’s millions of other companies that we can get money from that will not tie us to a pharmaceutical company that in my view is trying to tell my family,
tell my son, and my friends that they’re not OK the way they are,” Marohnic said at the town hall. Her teenage son, Matthew, has achondroplasia.

What’s Next? severe disabled wish. guest Author: petergibilisco Researcher, author and advocate. Bachelor of Business Accounting, PhD from Melbourne University. Dealing with issues involving disability.

I wrote and published this article on OnlineOpinion over 11 years ago. It is troubling to me that nothing much has changed over all that time.

I am still trying, even though I’ve got 1/4 of the abilities I had back then in 2008. That means now, I am constantly pushing the boundaries of my remaining
abilities to speak against injustices. I want to achieve so much in a personal, social and academic sense and all I ask is to be given the opportunity
to do so.

It is probable that everyone will get an itch somewhere, sooner or later. And so, when you get an itch, you do what comes naturally: you scratch it! It
is a simple process that itches are made to feel better when scratched. Or so it seems.

But what if you can’t scratch? I mean, what if you can’t scratch where it itches because you have nothing to scratch it with? It may be an itch that is
underneath your plaster cast that is in place to help with the healing of your broken knee-cap. What if the itch can’t be localised? What then? It is not
such a simple problem.

I happen to know a lot about the problem of scratching itches from a rather unique perspective How? Because I have a neuro-transmitter dysfunction that
simply won’t allow me to reach wherever it itches. So I have learned to cope, to block out the irritation. I have to admit that it is, indeed, a luxury
when I am fortunate enough to have a very empathetic support worker who can help me by scratching my back or my ear, but I won’t bore you with all the
details of my relief because I have only raised this with another purpose in mind, a purpose I might add which might help our society understand the itches
people like myself have to deal with.

I would like to draw attention to what disablement can mean to someone like me who suffers from Friedreich’s Ataxia. I’ve been attacked by this progressive
disease, since I was first diagnosed in 1976 when I was 14. Now I am confined to a wheelchair and need daily assistance with routine transfers, hygiene
and most of my daily activities. Living with a degenerative disease has broadened my thoughts concerning disablement and allowed me to focus on the need
for empathetic behaviour from those directly related to disability.

In 1981 I was 19. That was the year of the first United Nations International Year for Disabled People. You’d have to say that my life, with the progression
of Friedreich’s Ataxia, since then has tracked the development of public policy that has, in significant ways, taken seriously the problems that disabled
people have to continually and progressively confront.

In this sense mainstream society has begun to acknowledge disablement as a serious itch that needs to be carefully scratched with appropriate care, tools
and resources that are outlined in just policies.

And so there are policies, legislation, a wider social commitment, education and programs now in place that show, in this country, that we have a significant
society-wide compassion to assist those in great need. But, yet the itch is still not appropriately scratched!

Yes, we need ramps and railings that lead into public buildings. But, there needs to be something more. Let me tell you that I have received much, for
which I am very grateful. And have come such a long way with so many people to thank. I often wonder, how can someone like me have got this far? And with
a disease that has made a greater impact over my body as time passes.

I am now 45 and my care needs increase almost by the day. Yet despite this I have just completed a study tour in Hawaii visiting the University of Hawaii,
Center for Disability Studies. My social enquiry in the US focused on how many people with severe disabilities yearn for, and are capable of performing,
most human activities – with assistance from a support worker.

I was diagnosed with Friedreich’s Ataxia at 14 and then my mother died of cancer when I was 18. I was well and truly on a downward emotional and physiological
spiral. By 23, I was confined permanently to a wheelchair. But it was also around this time, with the encouragement and perceptive advice from a close
lady friend which lifted me out of a fantasy land of self-pity, that I began studying for an Associate Diploma in Accountancy at Dandenong TAFE. That inclusive
and happy learning environment gave me inspiration to tackle life with vigour and it still serves as a reminder to me when, like anyone else, I develop
the usual emotional itches which need scratching. That was my 1984.

But that year, 1984, reminds us of something else doesn’t it? Since then, my life has been not unlike the problematic world that George Orwell describes.
It is especially relevant to people like myself who are really very grateful for all the special consideration, no matter how insignificant, equal opportunities
and affirmative action we have received over the years.

But why is it problematic? It is problematic in an Orwellian sense because we know that if we raise a voice in criticism, even if we are trying to be constructive,
we put ourselves in an exposed situation. After having traveled so far, with so much kind assistance, it can too easily sound like we can never be satisfied
and can never get enough freebies.

It’s as if after graduating with my PhD, and then in 2007 when I was presented with the Emerging Disability Leader of the Year award, I developed a new
itch, but just didn’t know where so it could be scratched. My PhD thesis, my academic journal articles and my On Line Opinion pieces were all being applauded
but, somehow, the major issue I was trying to discuss was being ignored.

I think public policy towards people with disabilities, and in particular severely disabled or progressively disabled, has ignored some important factors
to the detriment of our society.

First, I will sound like a broken record by offering my analysis over and over again; and second, our society cannot be, or become, the compassionate solidarity
it claims for itself if it doesn’t hear what I am trying to say. I have a sense of obligation here to speak out. It’s not just for me, although I am painfully
aware of its application to myself and to my own situation.

The point is this: for some of us the special consideration, equal opportunity and affirmative action, designed to get disabled people into the mainstream,
paradoxically brings us to a more exposed and needy situation. This cannot be addressed without more special consideration, further and ongoing application
of equal opportunities after training is completed and further affirmative action once we have obtained our qualifications. It is a simple point that can
be readily illustrated.

This illustration of policy dynamism is based on the approach I have identified as pragmatic social democracy, advocated by Hugh Stretton and Marta Russell,
in my Doctoral Dissertation.

Once a person with a severe disability at TAFE, for example, receives a diploma then society’s responsibility to that person is not somehow fulfilled,
because at that point the obligations have actually increased. The person may need special support to attend interviews, and when that person is offered
and accepts a position of employment it may be necessary for technical and other assistance.

I could repeat this point for each of the steps I have made through my own higher education: TAFE Diploma, Bachelor of Business, Bachelor of Arts, Master
of Arts, and Doctorate of Philosophy. There are other facets to keep in mind as well. Somehow we need to find a way to view and support people with a disability
in pro-active methods of equal opportunity; rather than focusing on the medical model’s view of a sympathetic approach: people with severe disabilities
need an empathetic approach, aligned to the social model. My assertion is that society’s responsibility increases in specific ways oriented to professional
commitment and involvement, once the student with a severe disability graduates.

But, as my own needs, and possibly those of others, have increased or are increasing, support is not only to be seen in educational terms. The dynamic
of increasing support reflected in policy should also seek to meet the increased needs which the policy at an earlier point has also helped to bring about.
There are also increased needs of those who support, as well as, the increasing needs of the person with a disability.

For a TAFE graduate like myself, I was faced with a daunting prospect. I had a wonderful Technical and Further Education experience, which affirmed me
as a mature-age student, and I was no different in some ways from any other TAFE graduate: “What next?” we asked. Leaving TAFE for all of us in that year
was a life changing experience, but life moves on.

Life moves on. That is the irony that is central to my attempt to point to the dynamic at work here. But the paradox is that not all of us, and not all
disabled people, have to deal with a progressive disease. To apply for a job in an accountancy firm after my graduation from Technical and Further Education
would have been to ask the prospective employer to initiate a general policy change that we, as a society, were only just beginning to think about let
alone implement.

The political consideration of equal opportunity and affirmative action was still at an early stage. So, as I look back on it now, it is no wonder that
I was attracted to the higher education field which proved to be more advanced, and hence more hospitable to me with my particular needs, than most other
areas.

I am the beneficiary of higher education which has been required to make room for disabled people. But then, it seems that higher education was also being
re-oriented to make it compatible with job training for a post-industrial society. In such an environment, as Marta Russell has pointed out, a university
degree becomes the evidence that society has met its obligations to help disabled people compete. Equal opportunity was not always matched with appropriate
affirmative action.

In this respect I would suggest that affirmative action needs to be taken to a new level. And perhaps this new level cannot be reached without recognising
the ongoing obligation which a degree-granting institution has to its graduates. Understanding mutual obligation from the institution to its highly qualified
graduates is downplayed if not lost entirely.

In my own case, a university which takes a qualified post-graduate student with Friedrich’s Ataxia into its PhD programs, should not view itself as giving
a sympathetic expression according to the medical model’s agenda, which has the unfortunate ability of systematising disability policy pursuits. Although
that is, I am sorry to say, the predominant way in which Australian higher education under third way and neo-liberal policies tends to view such achievements.

That’s the itch I have wanted to scratch. We need universities that will recognise that their institutional mutual obligation is not transacted merely
by granting degrees and then every year thereafter sending out brochures inviting its highly qualified alumni to give generously to the university’s noble
cause.

In my case I am forced to ask: How is it that the university has not required me to give back by post-doctoral research and to be part of its ongoing research
effort? How is it that it can take on a candidate without expecting to maintain its responsibility to provide ongoing support after graduation, and also,
in order that its own research work is enhanced by my contribution?

Note, my point is not to ask that my work be judged before I do it. I am referring here to the lack of effort or empathy that seems to come from the side
of those administrating higher education institutions in Australia.

Writing On Line Opinion pieces, or developing my own Blogspot, are indeed satisfying experiences and I would not want them to be taken away. But such personal
satisfaction at getting a paper published is not the main game. What I am concerned about is the development of genuine policy for the severely disabled,
and in particular, policies that will seek to meet needs that arise from progressive disability.

I have always done what is needed to be done, and I only wish to keep bringing to light the individualism of people with disabilities.

PETER BOOK POSTER FINAL

I talk about social issues and disability in my book, 6 and a ½ Years on a Dunghill: Life in Specialist Disability Accommodation.

2 disability experts paints a grim picture on the BBI report “why the disabled Kenyans always fall into cracks” Authors: DR Siyat Abdi and Mugambi Paul.

According to the World Bank, WHO and the United Nations One billion people, or 15% o

f the world’s population, experience some form of disability.
Persons with disabilities, on average as a group, are more likely to experience adverse socioeconomic outcomes than persons without disabilities. Such as less education, poorer health outcomes, lower levels of employment, and higher poverty rates.

Barriers to full social and economic inclusion of Kenyans with disabilities include inaccessible communication, navigating the physical environments, inaccessible transportation, the unavailability of assistive devices and technologies, non-adapted means of communication, gaps in service delivery, utter unemployment inequality and generally discriminatory prejudice and stigma in Kenyan society.

From our professional lenses and in-depth analysis, we observe that the voice of this largest minority was never hard on the BBI 156-page report.
Notwithstanding, understanding the influence of different stakeholders in public policy making is very Critical “Carolyne 2016].
Although the BBI Taskforce had lots of public network in executing some of the insisted public approaches [Carolyne 2017], the task force did a total disservice and provided just a window dressing of Kenyans with disabilities.

In our collective opinion, the first omission and a major setback was the lack of representation of persons with disability in the BBI task force for persons living with disabilities.
This affirms the incessant notion of the government of Kenya of not ensuring article 54 of the 2010 Kenyan Constitution is realized.
Our expectations were high, and therefore, we expected the Taskforce would provide a clear direction on accessible representation that responds to the needs of persons with disability.

Secondly, on behalf of all Kenyans with disabilities who are the largest minority, we affirm the term “Disability” appeared 9 times in the BBI Report.
This was not in reference to any commitments to the 9-point agenda in their Terms of Reference but giving basic information of the experiential circumstances people with disability find themselves in Kenya.
In other words, the task force deliberated on the historical background on issues regarding persons living with disabilities without offering any commitment on how the nation will address the historical and traditional social injustices encountered by person with disabilities in Kenya.
Instead, the Taskforce echoed the common cliché we are used to by outlining traditional principles which clinically failed to work in the past.
No doubt, the BBI task force affirms what Paul Mugambi said in one of his articles, emphasising why the disability movement in Kenya must change tact once and for all!
http://www.mugambipaul.com/2019/11/17/why-the-disability-movement-in-kenya-should-stop-crying-faw/.
Increasing inclusivity on a political, economic, social, religious, cultural, youth, and gender basis is not Inclusivity devoid of disability.
How long are we going to continue being marginalised both in the national government and in the Counties?

It is worth noting the reflective theoretical commitment of Kenya to the 2030 Agenda for Sustainable Development goals.
It affirms clearly that disability cannot be a reason or criteria for lack of access to development programming and the realization of human rights.
Additionally, the SDGS framework have already been integrated in both short- and long-term Kenyan plan strategies, but limited wheels of implementations are in actions.
Its significant, to pronounce that the SDG framework has seven targets, which explicitly refer to persons with disabilities, and six further targets on persons in vulnerable situations, which again include persons with disabilities.
The SDGs address essential development domains such as education, employment and decent work, social protection, resilience to and mitigation of disasters, sanitation, transport, and non-discrimination – all of which are important obligations for the Kenyan government.

Unfortunately, the BBI task force team clearly seem to have been communicating to persons with disabilities in the charity model.
This is to mean the expressions reference to persons living with disabilities seem to be a separate group from Kenyans and this shows that there was exclusion in addressing persons with disabilities in the BBI report.
Thirdly, the term inclusion appeared 24 times.
The only relevant was the 22nd mention.
The cruel irony is that Article 174(e) of the Constitution provides that one of the objectives of devolution in Kenya is ‘to protect and promote the interests and rights of minorities and underserved or discriminated-against communities.’
It is for this reason that the Taskforce strongly feels that measures leading to greater inclusion, equality, equity, and basic fairness at the National level should be mirrored in the Counties, both in law, policy and administration.”
Do you think people with disability will enjoy this commitment?

Fourthly, the term Physical access has been mentioned twice and the 2nd one is relevant to persons with disabilities.
Increase physical access for people with disabilities into buildings, particularly public ones, and transport.
This shows the limitation of the BBI report since it’s not just enough to talk of physical access of built environment and transport only.
Kenyans living with disabilities still need more in area of universal and accessible housing, employment opportunity, and access to building (public and social facilities), communication and access to adaptive technology among many other disability services.
Fifthly, the term “has access” has been mentioned 42 times in the report.
The only relevant area is the 2nd mention. “
The aim should be for all Kenyans to have to cover the same distances to access public services.”
The access to information seems to be one of the major recommendations for the BBI task force but they avoided to demand for alternative accessible formats which could have ensured those with vision loss (blind), those with cognitive disability and other print disabled access information.
The BBI task force would have well utilized the Marrakesh treaty as a benchmark on access to information with excellent literature support from the United Nation Convention for the Rights of Persons with Disability (UNCRPD).

The BBI report missed opportunities to present across several mechanisms on enhancement of rights of people with disability in Kenya:
For instance, we anticipated that they would have an opportunity to present a structured Social protection systems that would be barrier-free and inclusive, and in a manner which ensures that everyone has equal opportunities to access social protection schemes, which may require special measures for particular categories of the population who may face additional barriers, such as persons with disability and the elderly Kenyans.
They missed to articulate the structure and design implementation of social protection, taking into account Human rights principles and standards at every stage of the schemes in the context of the level of marginalisation experiences of persons with disability both in the national government and in the Counties.
We welcome the Taskforce proposal to change the County Executive, including, but not limited to, the running mate of every candidate for the position of Governor.
While it is commendable to suggest consideration of the opposite gender, window of opportunity should have been given for any governor to decide their running mate, and if possible opportunity to make informed decision to pick a person with a disability as a Deputy Governor.
Another missed opportunity was to empower the National council for People with Disability NCPWD to be elevated a disability commission instead of a semiautonomous body incapable of servicing people with disability.
This could be either through a referendum or by legislation which could have subsequently ensured that the disability commission is well resourced and has the capacity to provide appropriate disability services based on social model and ensure the realization of disability rights.

On a positive note, the beauty of the BBI report is the importance of public participation and engagements. We hope people with disability will be fully engaged in decisions that matter to them.

In conclusion, the BBI report seem to have nailed the coffin for persons with disabilities by claiming that people with disabilities in Kenya are bunch of winchers, always complaining of injustices.
It seems the task force doesn’t understand that people with disabilities in Kenya are tired of the prolonged injustices experienced.
Yes, we must complain and continuously complain because we don’t expect civil and political elections of representatives in Party primaries and nominations to be fair; free and transparent elections in the context of persons with disability.
We must raise our voice because we are severely marginalised both in the national government and in the Counties in terms of employment and social services.
We cannot be satisfied with the BBI solution of just using reputable private recruitment companies to help, but to put in place recruitment legislations that give Kenyan people with disability opportunity to exercise their skills and talents to maintain their livelihood.
What the Kenyan people with disabilities need is real tangible implementation of legal and policy frameworks and ensuring persons living with disabilities actually access all government and private services just like any other Kenyan.

The views expressed here are for the authors and do not represent any agency or organization.

DR Siyat Abdi
Is a independent disability consultant.
Mugambi Paul is a
Public policy diversity and inclusion expert.

Public participation event

address to the public on importance of engaging disabled persons

DREAM OF DISABLED KENYANS. A speech on 3rd December to commemorate the international day of persons with disabilities in Kenya. Author Mugambi Paul

As Lopita Nyong’o said “dreams are valid”

I am humbled and grateful as your Cabinet Secretary.
The Makueni governor,

My principle secretary,
NCPWD board and secretariat.,
The ministry of labor social services.
Distinguished disabled persons, wananchi hamjambo?

I’m preaching to the converted when I say that getting a job and having a job is an absolute game-changer in everybody’s life and that shouldn’t be any different for somebody who has a disability or somebody who lives without one.
The importance of the independence, the self-confidence, the skills and the connections to society and community that are created when you have a job are absolutely essential and not the least of which it means you have an income.
needless to say, we are committed as a Government around employment for all Kenyans but in my position as the Cabinet secretary for Labor and Social Services I’m very focussed on disability employment.
My one simple goal as the cabinet secretary responsible is to make sure we give Kenyans who have a disability access to the full suite of opportunities in the employment sector – whether it be self-employment, open employment, supported employment or other types of employment.
In other words, it is absolutely essential we continue to focus on that.
I want every Kenyan living with a disability who has the capacity to work to get a job.
In particular, I want to see more opportunities for every person who’s able to get into open employment, to actually be open employment.
I want to make sure that employers see employing a person with a disability as just a mainstream, everyday activity.
I want everybody who’s living with a disability to gain from the big for agenda plan by the president.

Furthermore, with respect to the world of work, Kenyans living with disabilities have historically faced serious challenges and barriers impeding their access to employment.
This represents a violation not only of their rights, but a loss for our societies and economies. Many persons with disabilities continue to face discrimination
with respect to opportunities and outcomes in the Kenya world of work.

According to Thorkil Sonne, Chairman of Denmark’s Council for Corporate Responsibility and Sustainable Development Goals (
“Results from many employers show that it makes good business sense to provide inclusive work environments for people with disabilities. You will get the
work done, and also harvest positive side-effects such as higher engagement, higher retention rate, joy of work, sense of purpose and improved management
skills in the workplace.”
Unfortunately, employment in Kenya does remain an issue for people with disability – I’m not telling you anything that you don’t know.its a proven fact that many employers in both public and private entities have continuously practiced marginalization and discriminatory tendencies [ILO 2017 Whiteford 2018]
For instance, some employers have failed to consult disable employees and thus arbitrarily transferring them.
This must stop since it causes mental distress and frustrate the employees with disabilities.
To make matters worse no provision of reasonable accommodation and measures are put into place.
As a government we shall take actions to ensure especially the public entities provide platform of consultation as envisaged in in the 2010 constitution. This is well supported by ensuring reasonable accommodation as enshrined in the UNCRPD and the public service disability mainstreaming regulations 2018.
My ministry will set the example by ensuring this is followed to the latter.
I also take note of Participation in the workforce for people with disability which is lower than those that live without a disability [daily nation 2015]
Participation rates for people without disability continues to improve in our workforce but participation rates for people with a disability hasn’t [Mugambi 2017[
In fact, at the moment there’s a 70-percentage point difference between the participation rate for people who are without disability and those with a disability.
Additionally, we are absolutely committed to make sure that we fix that problem and there is every reason that we can with the help of the people that are here in Makueni.
Improving employment outcomes is a high priority when it comes to disability and I’m sure that it’s absolutely the highest priority for Kenyan government.
But equally we understand that as Kenyan government there are things that we need to do, levers that we need to pull, policies that we need to put in place to ensure that we give you the best opportunity to deliver on behalf of the people in Kenya with disability.

Today, I wanted to talk about some of the key policy levers:
Social protection strategy.
NCPWD strategy
Persons with disability bill 2019.
Draft disability policy
National action plan on accessibility.
At the end of the day, my decisions are guided by what is best for the individual and that must be guided by the feedback that I get from individuals who live with disability and from people like you who engage on a day-to-day basis with the employment sector.
I hope the national employment authority, NCPWD, federation of Kenya employers and other stakeholders will be keen to realize this dream and vision of ensuring Kenyans with disabilities get to the job market.
Its clear in my mind employment of persons with disabilities is the most absolutely needful priority of all times.
We thank the NCPWD for the last 16 years for endeavoring to reach out to employers.
NCPWD through the disability mainstreaming have helped employers to get themselves up to speed in understanding what it is to employ somebody with a disability but, most importantly, to retain those people in the workforce.
Over the next 3 years, my ministry will collaborate with partners and ensure we commit to reducing the unemployment rate among Kenyans with disabilities.
This is through having substantial reforms which will ensure improved employment outcomes.

I am keen to hear back from you as to how you think things are going and what you would like to see us doing in the future so that we ensure that we maximize the opportunity for every Kenyan with a disability who wants to work to be able to get that job and keep it.
In other words, this will ensure disabled persons are at the co plans and get to participate in public policy reforms and implementation.
Moreover, A crucial element in all our efforts to increase the employment outcomes for people with disability is the attitude of employers.
It’s disappointing to see that whilst research points to the fact there is a desire for employers to employ people with disability, that desire doesn’t often translate into actual action.
A lack of confidence appears to remain in the wider employment sector about employing people with disability.
I want to work with you on how we encourage greater understanding in the employment sector about the huge benefits of employing somebody with a disability.
If we can just get the employers through the door, they will be able to understand that with the right support people with a disability can be some of the greatest employees that they will ever have.
I think that’s what we need to make sure to continue.
We can do better; we will do better and I’m sure working together that that outcome will actually be achieved.
We need to make sure we give people with disability access to the full suite of options for employment – be it self-employment, supported employment or mainstream private and public sector.
Lastly I promise Over the coming 12 months the Department will be working with all sectors, whether it be your sector, whether it be people with disability, whether it be the business community or county governments, to make sure that we develop a Disability Employment Strategy that starts to mainstream disability employment into everybody’s vocabulary.
Because clearly everybody benefits, absolutely everybody benefits, when more Kenyans are in working.
Lets all work towards achieving the global commitments we made in July 2018.
In conclusion can I just say thank you so much for the opportunity to be here today.
I hope you have a fantastic Christmas holiday.
Kindly do not drink and drive.
Kenya needs you more.
Happy new year 2020

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.

The 8 Traits of Highly Confident People Guest Author Michael Thompson

1. They avoid pressing their own agenda

The truly confident know they will get what they want out of life in due time. As a result, they don’t run around telling everyone they meet about their
grand plans. Instead, they possess an “I can and will learn from everyone” attitude and enjoy nothing more than learning about the perspectives, thoughts,
and feelings of the people around them. This is for the simple reason that they like people and they want to do good by them.

Next time you’re in a group setting, take note of who guides the conversation and how: Who asks the most thoughtful questions, and who listens more than
they speak? Confident people don’t need to control a conversation. They know their own agenda; they want to learn about the goals, dreams, and passions
of the people around them.

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2. They proactively connect others

Confident people are givers and they are constantly on the look-out to help other people achieve their goals. One way they do this is by sharing their
network and connecting like-minded people every chance they get. Not only that, but when it comes to introducing people they take the time do so in a thoughtful
way.

How do you feel when someone introduces you like, “You’ve got to meet Todd. He was the guy I was telling you about who has a knack for thinking outside
the box.” Pretty incredible right? It’s much better than just, “Hey, this is my colleague Todd.”

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3. They share their ideas freely

In addition, to sharing their network, confident people do not hog their creative insights. In fact, they freely give them away as often as they can.

How can I help Nick solve the problem he is facing? How could Lisa get more eyes on her project? What is Ian missing from moving his business from good
to great? Confident people ask themselves these questions because they receive great satisfaction from helping people to reach their goals. Plus, they
recognize that life is short, and the best way to see their ideas turn into reality is by giving them to other people.

——————————————————————————–

4. They persevere intelligently

Confident people know what they want, and they have the gumption to keep fighting for it, even when the odds are stacked heavily against them. Then again,
plenty of people do that. What separates the truly confident from the overconfident is their ability to seek out advice from people with varying points
of view.

Not only that, but confident people aren’t afraid to change their minds when they are presented with a better alternative. It’s not a question of who’s
right or wrong. If there’s a better idea, confident people adopt it, then thank the person for their advice and pay the favor forward.

——————————————————————————–

5. They don’t get hung up on things that are outside their control

Confident people fight to get things right. But they also recognize that much of what happens in life is outside their control and they have an almost
stoic resolve to let things run their course after they’ve done everything in they can.

Weigh the options. Seek out advice from people you respect from both sides of the aisle. Make a decision. Let things play out. Like most advice this is
easy to say and hard to do — but confident people don’t shy away just because something is difficult.

——————————————————————————–

6. Their verbal and non-verbal cues line up

Researchers have found that the congruence between what’s said out loud and what’s communicated without words is
crucial for establishing trust.

Confident people understand the importance of this and when you’re in their company you’ll not only see that they’re being attentive, you’ll feel it— in
the way they position their bodies and make eye contact. They lean in when they sense something means a great deal to you and they’re not afraid to give
a subtle touch when warranted to show you that they truly care for you.

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7. They don’t seek approval from others

Attention feeds the human appetite on some level for everybody, but the truly confident, as Kareem Abdul Jabbar once put it, just want “to play the game
well and go home.”

I recently overheard someone say, “Surely you heard about what I did?” The crowd thinned out pretty quickly after that one. Confident people play for the
name on the front of the jersey and deflect most attention onto the team — or onto someone who went unnoticed. They know that sharing the spotlight is
far more satisfying than going it alone.

——————————————————————————–

8. They celebrate the success of others

If you know what you want and are on a path to achieving it, what’s stopping you from truly being happy for somebody who fought hard to achieve one of
their goals?

Confident people take real pleasure in seeing other people succeed and recognize the importance of supporting others. They remember how they, too, are
empowered by others at key times in their lives. After all, being truly happy for other people has this funny way of adding to your own happiness.

——————————————————————————–

Perhaps the biggest lesson I’ve learned, though, is that while we all have fears and flaws, the key is not letting them get in the way of being you and
going after what you want.

My friends taught me that, and in turn taught me the true definition of confidence: Taking care of your own and giving them the power to one day take care of others

Mugambi Paul is a public policy diversity and inclusion expert.

The dream of saving the disabled Kenyans Author Mugambi Paul.

We’ve come a long way, with disabled Kenyans having more opportunity than ever, but there’s still a long way to go.
Since 1992, the International Day of Persons with Disabilities (IDPD) has been annually observed on 3 December around the world. The theme for this 2019
IDPD is ‘
Promoting the participation of persons with disabilities and their leadership: taking action on the 2030 Development Agenda’. The theme focuses on the
empowerment of persons with disabilities for inclusive, equitable and sustainable development as envisaged in the 2030 Agenda for Sustainable Development,
which pledges to ‘leave no one behind’ and recognizes disability as a cross-cutting issues, to be considered in the implementation of its 17 Sustainable
Development Goals.

My hope is that Kenya will reach a point where basic education about acceptance and inclusion is no longer imperative.

I hope we’ll reach a point where it’s commonly understood that people with disability have the same rights to independence, employment, respect and access
to facilities as everyone else.
And I believe finding jobs for the thousands of Kenyans with disability who dearly want work is an essential part of getting there.
As a public policy scholar, I observe, it’s difficult for a blind person to land a job, even with stellar qualifications. A blind person with an associate degree is statistically less likely
to be employed than a sighted high school dropout.

Often, employers who don’t have experience working with disabled persons can’t conceptualize
how a disabled candidate can perform the job’s duties.
It makes matters worse employers who have experienced working with disabled persons are the barriers of enabling the Kenyan disabled to be employed.
As Helen Keller once said, “The chief handicap of the blind is not blindness, but the attitude of
seeing people toward them.”
These ungrounded fears contribute to the persistently low employment rates for disabled people.
Statistically as research shows at list in a population of 10 disabled Kenyans 8 are not employed.

To shift attitudes and make a difference — more people with disability need to be supported in the workplace.
I opine that most employers do not know that disabled people aren’t in the workforce, meaning employers are missing out on the benefits of hiring people with disabilities, including improvements in profitability,
competitive advantage and innovation.

Moreover, I grew up in a rural set up. where my community never bought into who I was — and made my world not as accessible as they possibly could. I had a great struggle to accomplish my educational journey,
where I faced discrimination and not treated as a peer. I believe right now,
There are many people with disability hoping to engage in work and the community more broadly and receive the opportunities that I was given so naturally.

They deserve the opportunity to be employed and fulfil their potential as much as anyone else in the African community.

I know what I most want to achieve as I celebrated my 22nd Birthday of being Blind.
Secondly my dream is
What I most want is for the community to use IDPwD as a launching pad for further action.

At this year’s celebration I hope governments, individuals and organizations will take the opportunity to commit to one concrete action towards removing barriers to accessibility
and inclusion for disabled Kenyans.
This is not too much to ask!
Get your workplace to give a person with disability a job.

Look for ways you can make your organisation, building or website more accessible for people with disability.

Create a paid internship program to help people with a disability get the skills they need to find a permanent job.

Provide anti-discrimination and bullying training to your staff — particularly those in customer facing roles.

If I can convince one person to roll up their sleeves and create a job for a person with disability or improve accessibility and inclusion within the community
— I’ll be satisfied with my contribution as a public scholar and expert in diversity and inclusion.

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.

Kenya society for the Blind need to be led by Blind and vision impaired persons Author Mugambi Paul

Kenya society for the Blind need to be led by Blind and vision impaired persons
Author Mugambi Paul

believe this as much today as we did in 1940. Unfortunately, too many Kenyan people
still take literally the parable that says when the blind lead the blind,
both will fall into the ditch. In 1950 our hope said that a literal
interpretation was wrong, and our experience now confirms it day after day,
year after year, decade after decade.
This is when the formation of Kenya Union of the Blind took place.
Unfortunately most never lived to see the fruits of there labour as veterans.
This affirmed by the heroes and heroines in the Blindness sector who have either gone ahead of us.
Some of these have provided great leadership and others have refused to pass on the baton to the generations to come.
I affirm that Kenya union of the Blind is one of the sleeping icons in the country.
As an advocacy organ it has not put any government institution relating to blindness to reform or become accountable to the Blind and vision impaired .
The heroes and heroines in the Blindness sector are turning in to their graves asking what happened?
As I was explaining earlier,
i but parables, stereotypes, and legal beliefs do not easily give way
even in the face of evidence refuting them. Unfortunately, the Blind and visually impaired persons have rendered the public space to be run by others who are not blind or vision impaired.
Kenya society for the Blind is one great example where the blind and vision impaired think they can find solace but it’s all in vain.
Kenya institute for the blind is facing similar predicament.
When was the position advertised?
Was it accessible to the blind and visually impaired persons?
Aren’t there Blind and visually impaired professionals.
Why are we silent on this?
In other words, many professionals who are not blind have mastered to speak on our behalf and have largely misrepresented the Blind and thus the once vibrant blind and vision impaired sector is crying for social justice to prevail.
The blind and vision impaired persons need to scrutinize the positions of the Chief executive officers of these government entities so that they do not become permanent and deny able blind and vision impaired persons from serving their own.

As a public policy scholar, I opine the blind and vision impaired persons need to rise and bring cows back home.
This is to say the blind and vision impaired need to make important decisions on how the blind related organizations ran by government and nonstate actors through having the say.
Secondly as a blind person I know the shoe since am the wearer.
No amount of professional who is neither Blind or vision impaired can understand or have the experience we have.
Thirdly, no wonder Central bank of Kenya and the Kenyan media have collaborated to cheat the public that bank notes are accessible to us the blind and vision impaired persons!
Let the Blind and vision impaired come of age and do the needful.
We are grateful for the support you have offered us,
Let now the Blind and the vision impaired persons be the leaders in the sectors.
Am not surprised that the little kid the Albinism family has been able to build away from home and has fortunately claimed the national cake at its best.
Unfortunately they left the Mother and father “Blind and vision impaired” to suffer.
Furthermore, without blind once built their identity not only on helping the blind but in speaking for us, making
all important decisions for us, and being the interpreters through which
Kenya would hear from its blind unfortunates. Thanks to Kenyan constituent which recognizes the people as the owners and proclamation of public participation and a country that encourages us to reach for our day in the sun as we
pursue the Kenyan dream.
Will the Blind and vision impaired generation not have chief executives who are blind?
Will the future blind and vision impaired generation just see us in the profession of begging and teaching?
I hope the Kenyan blind and vision impaired person now can start to speak for ourselves, direct the
programs that serve us, and tell our communities what we need and which
service providers are delivering it. We still need professionals who learn
to teach the alternative skills we need and to develop ever-more-helpful
equipment, but we do not need these men and women to speak for us but with
us, sharing in the collaboration that creates, maintains, and evaluates
quality services.

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 vehicle tax for the Blind has no sense! Author Mugambi Paul.

Most governments in the world tend to design and develop public policies with interests attached.
This is to say the policy makers and stakeholders have a tendency to influence the outcomes of regulations, guidelines and policy processes.
Moreover, for any public policy to be practically executed for purely benefit of the majority it must have passed through the bottom top approach.
The lack of engaging disabled persons in Kenya in developing most policies has led to have poor execution of most well intended policies.
For example, the tax exemption of vehicles by the treasury ministry seem not to have achieved its purpose.
I affirm that the tax exemption seems to benefit a tiny fraction of the disabled community in Kenya.
In other words, the largest population of the disabled Kenya aren’t enabled.
Why is this?
Majority of the disabled Kenyans are unemployed.
According to ILO report found that excluding people with disabilities from the labor market results in a significant loss to GDP across
Africa and Asia low- and middle-income countries as much as 3-7% of their GDP per year.
According to Public service report 2015 disabled employee persons account for less than 1 % in the public sector.
Furthermore, the purpose of the Kenya revenue authority is to collect maximum taxes and anything aimed at reducing it will cause jitters.
Another reason is lack of awareness amongst the disabled population this is evidently seen and expressed by this article. by https://www.standardmedia.co.ke/article/2000013873/the-disabled-still-pay-tax-despite-exemptions
With this notwithstanding, one of the marginalized groups among the disabled on this tax exemption is the Blind community who face triple tribulation.
Some of my findings among the blind community ascertain that this vehicle exemption doesn’t make sense.
This is because the Kenya revenue excepts the tax waver for a blind person but on the other hand, they take away by form of ensuring the blind is under the spell of paying more
Needless to say, the bureaucratic process itself makes the disabled person to give up.
The Kenya revenue authority needs to invest technology to reduce the bureaucratic and tedious processes when the disabled acquire there services.
I opine not just technology but an inclusive universally designed to soot all.
couldn’t the Kenyan government find a proper affirmative action for transport for blind commuters?
In most developed nations where Kenya emulates and copies most public policies; they could get the best on transport concerns.
Did I miss a bench marking tour by the ministry of transport in Kenya?
The jury is out there!

Implementation of progressive inclusive public policies regulations and guidelines will benefit the majority of the disabled.
Its high time policy makers in Kenya held consultations with the disabled persons to understand there needs and see how they can benefit majority.

We need to have proport policies which will benefit all.
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.

am I a indigenous disabled person Retracing my roots: Author Mugambi Paul.

As I joined the cultural exchange activity during the triple A assembly in Brisbane.
Many thoughts came to my mind.
When one of the tour guides gave me one of the traditional instruments to test.
It reminded me of my indigenous roots as a disabled person.
The tour guide and fellow Australian African award team were mesmerized how I blew the wind instrument with ease.
The thoughts which were in my mind were the lack of water access in 2019 in my rural village while have seen sufficiency of water through out in may stay in Australia.
The land where they don’t have enough water sources like Kenya.
Secondly, I thought of how my community has eroded the culture activities and materials.
I resolved to start a Canberra cultural center which will defiantly bring back my indigenous culture.
I remembered I never so my grandfather whom am named after.
He died as a hero fight for the rights of the people during the colonial era.
Stories are being told of how he never entertained colonial rule.
He was a strong defender of women rights.
Could I have inherited his traits?
I sometimes run away from my passion of advocating for the rights of disabled persons, but I find myself back.
Could this be my purpose of life?
Grandpa just whisper to me!
If he was alive, I believe the Kenya gender story would have been different.
All is not lost.
We as the exposed energetic and intellectually grown up have to rise to the occasion and bring back our culture alive.
For once I thought the aboriginals are related to my indigenous culture.
As a public policy expert am now duty bound to restore the history for the sake of future generation.
Australia celebration of the indigenous cultures and the multicultural events and activities have really restored hope and faith that we can live together and enjoy every one’s cultures.
I believe other expertise is needed to initiate restoration of indigenous culture. More so I will be digging out the indigenous disability culture.
How many fellow Africans are ready to travel the unchartered roots of our cultures?
We need to tell our story no matter the decades and the distorted narratives that have prevailed.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.

The Blocks to Disability Leadership and the mercantile economy of Kenya Author Mugambi Paul

Should disability leaders give up their work?

What world you do when you are in an office and all documents are inaccessible?
What would you do if you turned up for work and you had to climb a 3-meter brick wall to get into the office?
Ask the Nyeri law courts.
What about if everyone conducted team meetings
using PowerPoint and print materials?
How would you feel if you complained and nobody seemed to care?
The Kenyan public space has basically normalized this habit.
Yet, Kenya is the signatory and has domesticated the UNCRPD.
Kenya is known worldwide to have progressive laws and policies.
Imagine if we would have at list 10 % implementation of accessibility!
Let me give an example of the normalcy which occurs daily.

Some contemporaries of mine went to work the other day.

No big deal, hey. Lots of people go to work every day.

The difference is these colleagues are disability leaders. They are well respected in their various fields and regularly lead the public conversation about
disability. They are somehow not tough people I know, allot much gets in their way.
They mostly forget to bring the cows home by not demanding what’s is rightfully and constitutionally there’s.
!
This is to say, most of the public and private conferences in Kenya are held inaccessible areas.
Mostly, the disability leaders aren’t able to transact their work obligations as expected because the workshops and business areas are normally inaccessible. Very inaccessible. Should I say even the Kenyan parliament is among the list?
A place where the largest minority or marginalized group are supposed to find solace.
Should we continue with boardroom discussion on how to make accessibility real?
Or just continue with our social media rhetoric discussions?
Should we wait for another Kibaki moment to actualize the dreams of our heroes and heroines in the disability world?
Where is the accessibility voice space?
Who should be bringing the sector in to order?
The government and human rights bodies in Kenya “hamwoni hi ni dhuluma?” What I am
particularly annoyed by isn’t the inaccessibility, well actually that does annoy me, rather I’m very annoyed that a bunch of disability leaders have continued this trend to
work expecting to perform at their usual high standard, and they are unable to do so.

Most of them can’t live the venues or have alternative mode of communication.
That’s why in Kenya we are still talking in boardrooms about accessibility.
If one day the disability leaders walked out in protest of inaccessible venues and products it will be the turning point.
Through a social media survey, I actually noted that some disabled leaders aren’t involved by public and private entities into workshops.
They are normally left out and remain in offices.
There bosses tend to claim they are stubborn when they demand for reasonable accommodation.

How many local and international conferences have taken place in Kenya and accessibility becomes an afterthought?

This is a total distress and lack of engagement.
This affirms why disabled persons are not represented in most of the forums and become last to be remembered.

How is that the answer? Should disability leaders be giving up their work, or should conferences and workplaces be more committed to ensuring accessibility?

Newsflash: accessibility isn’t an extra or a nice thing to have, its mandatory if you want disabled people in the room. If you think diversity is of any
value at all then accessibility is part of your regular processes, it’s just how you operate. You budget for it, make it happen, build it in from the outset.
You choose venues that work, and make sure there are rapid responses to any issues that arise. You don’t argue and able plain and put the onus back onto
the disability leader to get less disabled, you take responsibility for making accessibility happen and you fix it quickly when it doesn’t.
which government building in Kenya is accessible for the disabled persons?
Most importantly, you make sure the people designing the access are those who know about access and have professional experience in accessibility.
This means they will also be disabled people. These access experts should be paid for their work, just like your sound technicians and caterers.
Obviously, lack of recognition of disabled experts has been normalized by the system, which we need to break.
and that makes it unusual. Most incidents of inaccessibility happen to individuals, often in workplaces that aren’t supportive or have managers who think
they know better, or they are single barriers affecting individuals at offices, seminars rather than everyone, so we never hear about them.
Mostly when organizers realize their mistake.
They normally result in a formal apology during the final plenary. Unfortunately, most of the disability leaders accept and move on.
Additionally, most apologies do not include a commitment to recruit disabled people onto the organising committee in the
future, nor did they include a reference to the same situation happening at the previous conference and this incident being a repeat.

There are still significant barriers to disability leadership.

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.

Researchers Developing Tech that Allows Blind People To See Through The Eyes Of a Sighted Person u

A team of researchers from Rice University in Houston, Texas is developing technologies that might allow a blind person to see the world through the eyes of a sighted person.
The project will involve sharing visual images between two brains. It will read the vision of a sighted person and transfer the images this person sees into the brain of a blind person “telepathically” in less than 1/20th of a second.
A team of neuroengineers has begun working on a headset or a helmet that directly links the human brain to machines without the need for surgery. This headset and the technologies that power it will enable this telepathic visual sharing.
It works by using both light and magnetic fields to interact with specially reprogrammed neurons in the brain of the wearer. The research team plans to transmit visual images perceived by one individual into the minds of blind patients as proof of concept.
This ambitious, four-year long effort is called the Magnetic, Optical and Acoustic Neural Access (MOANA) project. It’s being supported by $18 million in funding from the U.S. Defense Advanced Research Projects Agency (DARPA).
DARPA is interested in the project because of its Next-Generation Nonsurgical Neurotechnology (N3) program aiming to develop two-way interfaces that can transmit data between the human brain and machines.
Sharing visual images between two brains sounds futuristic, but Jacob Robinson, the lead investigator, said a number of recent technological breakthroughs make the idea feasible.
“We have to decode neural activity in one person’s visual cortex and recreate it in another person’s mind in less than one-twentieth of a second,” said Robinson. “The technology to do that, without surgery, doesn’t yet exist. That’s what we’ll be creating.”

Since surgery to implant a device into the human brain can’t be used, the Rice team plans to use a combination of light, ultrasound or electromagnetic energy to read and write brain activity. MOANA will test techniques that employ all three.
Robinson said MOANA’s decoding and encoding technologies will each employ viral vector gene delivery, a technology that’s in clinical trial for treating macular degeneration, some cancers and neurological conditions.
To “read” neural activity, the Rice MOANA team will reprogram neurons to make synthetic proteins called “calcium-dependent indicators” designed to absorb light when a neuron is active or firing.
“Our aim is to capture and interpret the information contained in photons that pass through the skull twice, first on their way to the visual cortex and again after they are reflected back to the detector,” said co-investigator Ashok Veeraraghavan.
The MOANA team includes 15 co-investigators from Rice, Baylor College of Medicine, the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital, Duke University, Columbia University and Yale’s John B. Pierce Laboratory.

OFF MY CHEST: What dating with a disability is really like Guest Author Nicole Mballah

In a world that’s technically built for the able bodied, dating as a differently abled person is doubly hard.
Trust me; I’ve had my fair share of troubles finding love.
Physical limitations are a part of a disabled person’s life, facing countless barriers every day.
We often have a routine to make things easier. When it comes to dating, minor things can require major planning and preparation.
Usually these are the questions that follow suit; where do we get an appropriate taxi? Does the building have an elevator? Does the restaurant have a ramp?
Is it too noisy or crowded to move around freely? All these things and more have to be taken into account.
But it’s not all gloom. I once went on a memorable date with this guy where not once did it fell like my disability played a part or affected him. We were just two people genuinely having a good time talking and hanging out. My disability was not a topic of conversation the whole night; I was simply a woman he was interested in.
BIGGEST OBSTACLE
In my opinion, the biggest obstacle to dating is social perceptions; I always find that people think that those of us living with a disability are either asexual or ‘undateable’.
People often think about how our disability will inconvenience them, rather than trying to consider if the relationship will work. I wish people knew that we‘re like everyone, with just a few barriers.
I’ve done my fair share of online dating and while it was fun at times, I’ve also experienced rejection.
I always try to be upfront about my disability, sometimes disclosing it on my dating profile and including a picture with my crutches into the mix.
In the words of pop singer Anne Marie:
“Love every single part of my body, top to the bottom. I’m not a super model from a magazine, I’m okay with not being perfect cause that’s perfect to me.”
My dating life has been bitter sweet. I sometimes meet men who are uncomfortable with my disability, stopping conversations once they find out or having to answer strange questions about having a disability, like ‘Can you have sex?’ and the outright weird that go ‘You’re too pretty to be disabled’, to potential dates who thought it was weird if they liked me.
While also meeting guys who accepted my disability, assisting me whenever I needed it, simply moving chairs out of the way at restaurants, just being helpful without it being too much.
Even if those dates didn’t turn out to be long term relationships I learnt valuable lessons, for every person that rejected me for my disability there was a person who didn’t.
If you reject someone with a disability, you might be forgetting that we all might have a disability in some way, it might not be visible so don’t assume to be superior.
Dating with a disability is always a challenge, whether it’s online or going on a blind date.
Don’t be afraid to make a connection. There is no correct way to do it. Don’t let the rejections get you down that’s just a part of life.
If you’re honest about who you are and what you want; there is always a door full of possibilities waiting to be opened.

Should I openly identify as disabled? Guest Author Christina Ryan

Should I openly identify as disabled?
Guest Author
Christina Ryan

Without role models culture won’t change.

One of the perennial topics of conversation in the disability community is whether someone should openly identify as disabled in their workplace. It’s a thorny issue and for good reason.

So, many people with disabilities have made the decision to openly identify and then experienced serious consequences, even losing their jobs over it. Of course, you can’t be sacked specifically because of your disability, there is legislation in many countries to prevent this, but you can be made to feel very very unwelcome and decide to leave. Many people have stories to share about themselves or about colleagues in the disability community.

Employment rates are low for disabled people, retention rates aren’t much better. What can we do to avoid the constant recruitment trap? Losing staff and constantly needing to recruit is hardly the solution, there must be other ways to build disability workforce so that we are also building disability leadership.

Recently I’ve been talking with disability leaders about being role models in their workplaces. Given that most people with disabilities are not visibly disabled this is a big ask. Yet it’s crucial to have senior role models so that culture changes and so that new recruits can see what is possible for them in an organisation. This is the “be what you can see” strategy. This strategy has worked increasingly well for women and for Indigenous peoples over the last couple of decades. We need to start using it for employees with disabilities as well.

Unfortunately, this places enormous pressure on disability leaders when they have already pushed very hard to get where they are, and just want to get on with being another employee, not a crusader.

Why must individual disabled people put their careers and financial security on the line?

Being part of a network, having peers at your level, and being part of a broader professional disability community (like the Disability Leadership Institute) are all contributions to how you can be supported if you decide to openly identify. However, none of these will prevent discrimination or ableist responses. Networks may provide assistance in knowing you are not alone and help with sharing solutions, but they don’t change the attitudes of others.

Of course, many people do not have the option of choosing to disclose as we are readily identifiable. In some ways this makes it easier as we don’t live with the anxiety of being exposed or choosing to make the decision to be open, but in other ways it makes it much harder as the prejudice starts before we even get in the room. We are left out of invitations or excluded from new projects because it is assumed we aren’t the best and brightest. All without someone knowing anything about us, except that we are disabled.

There is no easy answer, if there was we wouldn’t still be having the conversation.

People with disabilities are all different. As the single largest minority on the planet today, we are not generic, we are incredibly diverse. Our community is highly intersectional. Our one common thread is our disability and the prejudice and exclusion that it brings. Unfortunately, many of the responses to disability in the workplace are generic, rather than built round the individual, and this compounds the barriers to achieving career success and leadership positions.

We can’t shift the culture until we have critical mass, we won’t achieve critical mass while the culture remains as it is.

We need disabled people in far greater numbers in the public domain to achieve the culture shift that is desperately needed. However, this won’t happen until we are in a wide variety of positions and fields in strong numbers and openly recognised for our contribution to local, national and global leadership. People with disabilities are already in many of these places but are not openly identifying as disabled because the risks are so high, and why should they?