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.

Why the disability movement in Kenya should stop crying faw

Over the years the Kenyan disabled haven’t got enough opportunities in many spheres of life.
This is because of overreliance of the old tricks and lack of change of tact in the advocacy engagement processes.
Unfortunately, it’s true, many disability private and public initiatives have taken place either as a second thought or organized by the few politically correct individuals.

So, if we know this to be true, what are we doing about it?
Most of the time Kenyans with disabilities have not grabbed the recent social, economic or political opportunities.
For instance, after the 2007 post-election violence there was no representation nor disability mainstreaming agenda in the Kofi anaan initiatives.
This scenario has been repeated once again in the building bridge initiative.
The disability
movement is not represented and right now is when the disability keyholders are trying to unmask the already cooked food.
The disability movement in Kenya forgets so easily if you were not on the table in preparation of meal.
You don’t have manors to demand for the cake.
It’s prudent to say the Kenyan disability sector will just get the breadcrumbs.
This is seen by upcoming mobilization of groups of disabled persons to play to the gallery even when the building bridge initiative report is yet to be made public.
The reality of the day there is not a living systematic structural engagement of disabled persons.
The barriers to public participation are either because of financial reasons or even a few individuals who have held the disability sector on ransom.
Am not surprised that currently we have an amorphous body called
Caucus on Disability Rights Advocacy.
Additionally, we still have another platform still championing on the global commitments made in July 2018.
All of these platforms still have the same individuals and agencies.
Does the common Wanjiku with disability aware of these platforms?
Is the voice of rural disability hard in these forums?
What are the tangible benefits to the change of the implementation of legal or policy frameworks?
What are other alternatives to ensure real and proper public participation and engagement of many disabled persons can be achieved rather than the few elites in the disability movement?
I opine that in article 2 of the constitution of citizen participation and article 54 should be made a reality and mandatory.
Moreover, the movement needs emancipation from the tired narratives and demand what is rightful.
For example, why do the mentioned platforms do not engage in the recent happenings as reported in the media like how children with disabilities were mistreated.

Why has the disability movement kept mum on the gazettements done by government of Kenya?
The jury is out there!
This is evidenced by below article.
http://www.mugambipaul.com/2019/09/03/why-the-disabled-kenyan-man-missed-the-land-comission-job/land
The young and vibrant individuals with disabilities have a role to play.
Do not mind the lack of mentorship in the sector.
Rise up and contribute to the transformation.
Through this the youth can reduce social media lamentations.
Research shows 80% of disabled are between the ages of 18 and 64 – the workforce age.
This can have creative and innovative outcomes for the disability movement.
Additionally, the legal processes in Kenya have not favoured the disability sector.
As penned in my past articles we should await 2021 to have the repeal of the 2003 persons with disability act.
Moreover, we still have the 2006 disability policy still in draft form.
Does that sound an alarm?
Historically in Africa Kenya is admired for having best practises in disability sector but this tale is being overtaken by Rwanda and other African countries.
For instance, Kenya disability sector has been agitating for improved accessible public transport.
This hasn’t taken place and now Rwanda is boasting of implementing accessible transport by acquisition of accessible buses and subsidized fairs for disabled persons.

What more can be done?
It’s been my experience that disability sector wants to be seen as benevolent, accepting of all disabilities, and up to date in compliance. The reality is that
many don’t want to bother as long as their image is intact.
As illustrated in many forums organized by the disability sector and non-disability sector members, they don’t provide alternative formats of information or observance of reasonable accommodation.
If the disability sector made it mandatory to preach water and Drink water, I believe things will not be the same for future disability generations.
As a public scholar and a person with lived experience of being disabled.
I have a dream that one day the sector will stand tall and read declaration.
“We the disabled of Kenya from across our great Country;
Recognising the sovereignty of the Constitution of Kenya and of the great people of Kenya, 15 % of the Kenyan largest population.
Appreciating that the Constitution of Kenya is the consensus document that reflects the ‘voice of the People of Kenya’ and has ring-fenced and protected Clauses for all including disabled and other marginalized groups through various provisions.”
We express our disappointment in the lack of leadership and strong commitment by the duty bearers to ensure the implementation of the article 54 provisions.
We therefore have the following Irreducible Minimum

————

I passionately believe that If Kenyans with disabilities think everybody has value, everybody can be capable, and no one should be excluded. I make an appeal go and Tell your CEOs, board of directors in the disability sector and allies of the disability movement to join and rise to the occasion and change tact.
Why should the disability movement be singing to the second fiddle?

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.

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

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

The two Sleeping blind giants in Kenya: author Mugambi Paul

Reading the annual general meeting invite by the Kenya society for the blind gives a familiar script.
The process and conduct of doing things seem to be usual.
No logical or pragmatic turnaround of event.
The Kenya Society for the Blind is a statutory charitable organization established in 1956 by an Act of Parliament this institution is meant to guide, offer technical support to matters Blindness and vision impaired to the government and stakeholders.
Has Kenya society for the Blind lived to its promises envisaged in the 1956 at?
What is the role of government in ensuring the Blind and vision impaired persons live to exploit their potentials?
Did the government escape duty and obligation to the blind and vision impaired persons?
When shall we have the updated Kenya society for the blind act to meet the current issues faced by the blind and vision impaired persons?
The act needs to be aligned with the Kenyan constitution 2010, UNCRPD, Public ethics act and public participations act.

This is not to say that nothing is happening.
As a matter of fact,
Kenya society for the blind has held several charity activities geared towards education of the blind pupils.
Additionally, there are many grey areas on matters Blindness and vision impairment in Kenya.
Its either the Kenya Blindness sector has decided to be dormant or the system has refused to change.
For instance, in matters governance even with known lawyers we aren’t able to differentiate the roles played by board members and staff.
This is totally uncalled for and review needs to be done urgently.

This seems to be a common practice among the disabled persons organization in
Kenya. With this notwithstanding, in matters programming several issues can be raised.
What are the pros and cons of having car garages in the premises?
How many blind and vision impaired persons have gainfully been absorbed by the new ventures?

Several studies and social media posts have continuously demonstrated this behavior.

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secondly on face value the Kenya union of the blind is supposed to be the voice of blind and vision impaired in Kenya.
theoretically, Kenya union of the blind is mandated to be bold and grant the self and systemic advocacy initiatives among the blind and vision impaired persons.
It’s an institution where the blind and vision impaired persons can be able to become self-advocate.
It is also a platform
For engagement with government and stakeholders.
Can we claim the blind and vision impaired persons are self-advocates?
Is there a mentorship and leadership practice?
Where is the status implementation of marekesh treaty??
In matters governance Kenya union of the blind stand to be condemned for its status.
Am not surprised that the largest blindness organization in Kenya has the same chairperson for the last 30 years.

To make the matters worse
The chairperson was appointed as a commissioner in a state organ which is also supposed to play an oversight role on disability matters in the country.
This is a true example of conflict of public interests!
This discussion is held in low tones in the disability sector.
Am not flabbergasted when the Kenyan blindness sector has not experienced significant reforms for its current and future generations.
The barriers faced by blind and vision impaired persons have been compounded by the sleeping advocacy organ.
It seems the mediocre practises are in the Kenyan DNA.
Several researches have shown how many blind and vision impaired persons have low esteem combined with the restrictive environment they have lived.
This affirms why most individuals with disabilities are not able to advocate for themselves.
On the other hand, the disabled persons who seem to advocate for themselves are treated as riles or individuals who are outcasts.
Its high time the Kenyan blindness sector arose from slumbered and demonstrate with collective and unifying voice life will be better for present and future generation of the Blind and vision impaired persons. A clarion call is be stalled upon individuals to show the light.
As Martin Niemöller a prominent Lutheran pastor in reference to the Nazi regime, once said;
“First, they came for the socialists, and I did not speak out; because I was not a socialist. Then they came for the trade unionists, and I did not speak out; because I was not a trade unionist. Then they came for the Jews, and I did not speak out; because I was not a Jew. Then they came for me, and there was no one left to speak for me.”

Furthermore, there has been rise of new entrants in the Kenyan blindness sector.
In other words, the new kids on the block in the blindness and vision impaired sector need to take lessons from the 2 sleeping giants.
This will aid effective engagement and bring the blind and vision impaired persons to their rightful place.
The Kenyan government needs to establish an oversight agency to ensure the Blind and vision impaired persons do not become vulnerable under this circumstance.
Its clearly known that there are no support mechanisms in place to support blind and vision impaired persons.
The 98 % of the blind and vision impaired individuals are just survivors in Kenya.

some recommendations to the Kenya society for the blind and Kenya union of the blind.
1. Put the house in order by reviewing the ACT of 1956. By public participation and engaging policy makers.
2. Review the governance and regulation policies.
3. Conduct a self-surgery before the reforms take place. To demonstrate this, we Kenya used to have telephone booths later on Mobile took over. We used to have tined cooking oil now we have rapped and plastic cooking oils.to bring matters to perspective, Kenya society for the Blind used to advocate for persons with albinism. Things changed drastically and now persons with albinism left the Blind and vision impaired wagon for better tides.
All in all, the future is bright for the blind and vision impaired persons.
As a public policy scholar on diversity and inclusion I will strive to contribute by rearing many more disabled persons to be their own best advocate
I have recognized that as a blind person, if you know the laws and understand your rights you are the most authentic spokesperson for yourself. Thus, much of my work is now cut out
It doesn’t matter the time, but we are heading there.
Advocacy is one of the most important reasons for me to connect with disabled people and their families. When I do, I will teach them that they are not alone,
I will empower them with the tools to raise their own expectations, and I will connect them with an unparalleled network that will be a lifelong resource for them
to continue to be strong advocates for themselves.

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.

“Open letter to the Newly NCPWD chair” Mugambi Paul

“Open letter to the NCPWD chair”
Mugambi Paul

This letter is sent to our newly Chair of the NCpwd:
Dear sir,
Kenyan persons with disabilities
want the same opportunities as everyone else in the community – somewhere to work, somewhere to live, somewhere to enjoy the company
of family and friends, the chance to follow their passions and interests. We want NCPWD that makes these things possible – not stands in their way.

Using the ideas that have been collected for the last 15 years.
I have come up with the three C’s: three useful targets to help get the NCPWD
back on track. 1. Control

Kenyan persons with disabilities must be in the driver’s seat. It is their experience and their views that must determine priorities and drive change. Choice and
control must not be undermined or restricted by poor policies and processes.
For instance, it should no longer be business as usual for the Blind and vision impaired persons to receive brailed version of vision 2030 after a decade when it was out.

No disabled representative is at the building bridge initiative! Persons with disabilities must be empowered by their experience in the NCPWD, not further disempowered
and marginalised. And above all we want good outcomes for everyone –not just those who are educated, or well-resourced or who have an advocate.

So how do we make this happen?
list of 5 items
• Quicker, simpler and easier processes. Simple and plain communication that is easy to understand, more so for persons with developmental disabilities and Deafblind etc

• More help for people, families and carers at every stage of the process including application for assistance, peer support and advocacy

• Fully functioning and fit for purpose IT system that works for both consumers and producers of disability services at the county and national levels.
participants and providers

• Focused and resourced attention on groups who need more support – such as those with complex needs, severe disabled persons, Blind and those who have never been hard.

• More staff to clear backlogs. And competent well-trained staff with the right experience and expertise
Additionally, a 51 per cent disability employment target across all levels of the NCPWD including senior leadership. Currently
just 25 per cent of the NCPWD workforce have a disability.
Furthermore, on the public service I believe more needs to be done to stop the disability community
being shut out of public sector jobs
.
The 5 % has the target did not go far enough, given the consistent decline of employees with disability
in the sector.
According to public service survey 2015 Kenya has not yet achieved even 1 % target of employment opportunities to persons with disabilities.
I opine that targets needed to be supported by a comprehensive strategy to address the “unacceptably low” employment rates of people with disability
across the APS and in mainstream employment more generally.
A Kenyan National Jobs Plan to fix systemic problems that people with disability face finding and keeping a job.

This plan would include measures to strengthen the transition of young people with disability from school into tertiary education and mainstream jobs,
and would integrate with the social security system to support people with episodic disability moving in and out of employment.
Moreover, a whole-of-government and whole-of-community approach is needed to enable employers to create meaningful, flexible and inclusive employment, make workplaces
more accessible, remove discrimination and build positive employer and community attitudes.

2. Certainty

Persons with disabilities, their families and carers want to know the NCPWD will be there for them when they need it. Those who have made applications want to know
services will be there when and how they need them. And for those who do not have an assistances, other programs and services must continue. No one should be left
without support because Kenyan government can’t get it together.
Instructively, Kenya has been on top from the global disability forums that no one should be left behind.
So how do we make this happen?
list of 5 items
• Full funding should be enshrined in the upcoming national and county budgets and persons with disabilities 2019 bill

• Active support and intervention to make sure people have a diverse range of quality services to choose from. Intervene early to prevent failure and lock
in crisis support so no-one falls through the cracks

• Independently let NCPWD become policy formulator and a facilitator instead of an implementor.
For instance, immediate action on the way NCPWD works with other systems like health, justice and transport. All levels of government must sit down and work out how to synchronize services instead of making disabled persons to suffer.

• Greater develop and resource of the Information, Linkages and Capacity Building program. This will ensure NCPWD funds the disability persons organization to further efforts of advocacy instead of fighting each other.

• New timeframes for entry into the NCPWD, plant and equipment approvals and plan reviews;

• More help for people to navigate the NCPWD and get their assistance plans into action including more support for advocacy; and

• Targeted outreach for people who require additional support such as children, people who are Blind, psychosocial support and or Culturally or
Diverse backgrounds.
list end
but also initiate or restoration of other programs and services
that support people with disability, their families and carers
list end this should be reflected in the county and national levels.

3. Community

The NCPWD was never intended to work in isolation. The gap in life outcomes between those with a disability and those without will never close without action
in all areas of life – employment, health, education and transport are all areas that need immediate action.

So how do we make this happen?
list of 3 items
• Greater attention and resourcing to the Kenyan National Disability Strategy

• Immediate action on employment, education, housing, transport and health. Targets must be set – and met.
More so the big four agenda.

• An immediate timeline for a board of trusty’s actions in issuance of
funding

I observe that All across the country persons with disabilities
, their families and carers and people who work in the sector have been holding formal and informal forums in the social media, mainstream media and public forums. events and coming together to demand
urgent change.
Obviously, many policy makers know what’s need to be fixed but they aren’t doing so.
As the chair you need to listen to us. After all, people with disability and their families know what is and what is not working when it comes to the NCPWD –
and we know how best to fix it.
Scholars and researchers have recommended
The disability persons organizations should join together with a government and work collaboratively so we can get the ncpwd working well for everyone who needs it.
This is very true in many countries.
NCPW is a body mandated to promote and protect equalization of opportunities and realization of human rights for disabled persons in Kenya to live dignified live.
as a public policy scholar, I affirm that and There is no question that when the NCPWD works it absolutely changes lives. We see its life-changing power every day. But, for too many people, the NCPWD
is not working well. It is too complex and too bureaucratic – and as a result some people are falling through the cracks while others are missing out altogether,
we know of some truly heartbreaking stories of people who are really being let down by the NCPWD. There are people with disability waiting two years
for a wheelchair, there are persons with disabilities waiting for the disability card for 7 months, there are blind persons awaiting a braille display but told to have a white cane etc
There are families pushed to breaking point without essential support for their child. There are people hospitalised as a direct result
of the stress of trying to work their way through a bureaucratic nightmare.

“Situations such as these cannot be allowed to continue. That is why, today I have written this letter. calling on the new chair to
listen to persons with disability and commit to getting the NCPWD working the way it should – the way it is mandated in respect to the UNCRPD, SDG and the Kenyan constitution.

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 Kenyan Disability sector is yet to celebrate Uhuru in 2019: Author Mugambi M. Paul.

Why the Kenyan Disability sector is yet to CELEBRATE Uhuru in 2019:
Author Mugambi M. Paul.

The third eye on Disability policy implementation in Kenya 2019
In recent past, Kenya has been a global leader in developing and advocating for better disability policy framework. This is well articulated on the contributions made to the African disability policy framework, UNCRPD resolutions etc
Yet much is to be achieved in local policy development and implementation.
background:

In a chronology of events demonstrates that it has not been an easy ride for Kenyans with disabilities.
This is because the enactment of the
persons with disability act 2003 took place after the 3rd president was involved in a grisly road accident and took oath of office on a wheelchair.
Furthermore, the Kenyan disability policy has ever remained in draft formats.

All these indicators show It has been a tumultuous journey to have a repeal of the act or even actually develop a strategy of ensuring the realization of the rights of disabled persons in Kenya.

Actually, more than 20 versions of the amendment bills have been put across for the last 14 years.
This is not to say some sort of change has not taken place though it’s a snail pace.
, some piecemeal amendments have been achieved.
For instance, the sign language recognition.
With this notwithstanding, several questions policy makers have to ask themselves.
Who will actualize the implementation of beautiful disability global policies in Kenya?
When will persons with disabilities in Kenya receive and access services without overburdening them? when will the Wanjiku with disabilities stop facing surmountable of challenges in accessing services?

Short term reforms
Some of the actions taken after advocacy include:
Development of
action plan on accessibility 2015
gazettement of adjustment orders, participation on Kenya report on the implementation of UNCRPD 2015etc.
Additionally, in 2018 the ministry of labour has an interagency implementation of the resolution of the global summit held in London 2018

All these actions by the different policy makers are aimed at creating a more inclusive society that enables Kenyans with disability to fulfil their potential as equal citizens.
It is also the main way Kenya implements the United Nations
Convention on the Rights of Persons with Disabilities in Kenya, making sure people with disability can participate in all areas of Kenyan life.
As a public scholar I suggest the interagency organ of the ministry of labour develops a strategy which can address the existing gaps for policy implementation and enactment of 2020 disability act. It will be a great relive for many persons with disabilities.
If the interagency is offered the necessary resources and support, it can have development of a long-term strategic plan which can become a shared commitment by national and county government to work together to improve the lives of Kenyans with disability.
The interagency can guide governments and
other organisations to build the wellbeing of people with disability and their care givers.
Through this process the Ministry of labour and parliamentary committee can ensure the budgeting processes are disability inclusive.

There has been a lot of change to disability policy and service delivery since the enactment of 2003 act.
Some findings from disability researchers, bloggers and experience faced by persons with disabilities have established that the current act has lots of gravy areas.
This is because of systemic failures, lack of execution and resource allocation.
It’s prudent that ministry of labour and the stakeholders bite the bull by its horn by coming up with a long term 10-year disability strategy for Kenya which can be reviewed after five years.

Consequently, we need to make sure a new strategy reflects the changing policy environment and builds on opportunities available today as well as what may emerge over
the next decade, this includes considering the findings from KNCr reports the recent UNCRpd reports,
.
Public participation

constitutionally speaking the parliamentary committee, the ministry of labour should adopt public participation models which will enable persons with disabilities to contribute to the new strategies as a way forward.

This will ensure Consultation people with disability are at the centre of the design of the new strategy and have a leading role in modernising policies and
programs affecting their lives.
The needs to be a clear timeline of the consultation.
The policy makers need to adopt range of options available to ensure that persons with disabilities to have a say.
Importantly, all consultation should be accessible to people will disability.
This can be through the following:

list of 3 items
• an open public survey
Since some part of the population are able to access internet and more so the social media.

• face-to-face community workshops in every county
Media awareness.
• and online forum
The ministry of labour and the stakeholders should ensure that at all times.
The Consultations should be accessible.
This is by ensuring when registering persons with disabilities
provide details of any adjustments or special requirements they might need
key responsibilities:

Obviously, nominated parliamentarians with disabilities need to rise to the occasion and speak with one voice.
Its high time they realized disability is a cross cutting issue and doesn’t know the party lines.
They need to be accountable to persons with disabilities. At all cost.
The parliamentarians with disabilities need to think outside the box and develop bills targeting different aspects on disability not just targeting the reappeal of the 2003 persons with disabilities. For example, enactment of a carers act, braille and access to adaptive technology act, mental health act etc
We have evidently not seen the top law makers with disabilities drumming support for Legislation and policies underpinned by data disaggregated by disability which can make a difference by promoting meaningful
leadership, and consistently challenging harmful attitudes and practices.
.
For instance, the much hyped Huduma number and the upcoming census.
As policy expert I also orate that the disability persons organization are not playing their rightful role efficiently.
This is to say that an alternative view for better advocacy needs to be realized.
This is through continues research, surveys and serious consultations among membership.
Its true that most disability persons organizations have restricted themselves to Urban townships when consulting with out reaching out to the rural remote areas where even basic service to a Kenyan with disability are situated.
e
Conclusion

I believe that its high time the disability persons organization developed a serious advocacy framework with all organizations that care about the human rights and wellbeing of people with disability.
The human rights bodies and agencies need to be speaking up about the broader systemic issues that
need to be confronted, to ensure that people with a disability can have a good life.
going forward, it is not just the responsibility of the disability sector to make sure people with disability were included in the
community.
as Richardson a disability advocate says,
“This is about whole of community, and whole of government working through how best to include and embrace people with disability in all aspects of life,”

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.