The cost of remaining mum on Kenyans living with disabilities and individuals with chronic illness Author Mugambi Paul

Research shows that most chronic illnesses can affect every single part of individuals life, but it doesn’t really look like it. Some chronic illnesses have constant pains and fatigue among individuals [WHO 2011].
On the other hand, I have engaged several individual in the social media platforms.
This has led me to learn several lessons
You might not know a person is suffering if you don’t communicate ]HI 2011].
I classify some of these individuals as having invisible disabilities.
This is to say invisible disabilities mean that often times,
people don’t believe that actually individuals can be sick. This leads to people saying common things that, despite usually having good intentions, can come off as rude,
dismissive, and ableist.

The one I’ve heard the most is something that has undoubtedly been said to every person with an invisible disability or illness – the dreaded ‘but you
don’t look disabled nor sick!’. This happens all too often as an offhand comment, but it’s also been followed by heartbreaking situations like eventually losing friends
who haven’t believed that chronic illness or having impairment was real because people don’t look or act sick in the way they think one should be?
So, to give you a bit of a crash course, here’s some examples of what NOT to say to people with chronic illness.

‘But you don’t look sick!’

Yep, I know – but I am. These five words reduce health down to appearance, which is not the case at all. You might be saying this with the best intentions
(hopefully shock, because someone look ~too stunning~ for someone who’s actually very ill) but what it actually does is hits on one of the biggest fears of chronically
ill people – that people don’t believe them.
Actually,
Personally, whenever someone says this, it just reminds me of the many times people haven’t believed I can’t see because I didn’t *look* Blind. You might mean it supportively,
but all I hear is doubt.
This is because am super in mobility and orientation especially in familiar territories.
Sometimes it’s an anxious moment for me when individuals with out disabilities just plainly discuss behind my back “look at him, he is just pretending, he is comfortable” not knowing I have to go an extra mile to orient myself, secondly he or she doesn’t know that I have to do it since I don’t have alternative.
Additionally, I note that Not all illnesses are visible.
I can guarantee you; every chronically ill person has tried absolutely everything they physically and financially can. I cannot think of one person who’s
simply said, ‘ah bugger, I’m chronically ill. I’m not going to bother trying things to feel better!’
Trust me, some have tried it all; all the doctors’ and specialists’ suggestions, and yes, a bunch of the tinfoil hat ones too (desperation and lack of medical
answers make for strange bedfellows).

Examples of suggestions of what my friends the blind community and other persons with disabilities have tried including: various supplements, Chinese herbs, marijuana, LSD, ketamine, essential
oils, drinking their own urine, crystals, B12 shots, spirulina, charcoal, detoxes and juice fasts, prayer and religion – the list goes on,
as a blind fellow you can guest which one of them, I have tried I’ll let you ponder on which).

And before you ask, yes
You have seen many disabled persons, the chronic ill persons going to work, or you saw a photo of one catching up with a friend on the weekend. That’s irrelevant to whether he or she look ‘okay’ to you now
He or she still remains ill, and he or she maintains his or her impairment since they do not disappear.
According to several studies they indicate the nature of chronic illness is, sadly, extremely can be unpredictable. One can have totally manageable levels of pain and fatigue one day, and barely able to
walk the next. Sometimes it’s because one accidentally overexerted himself and went over my limits, but sometimes symptoms flaring can be completely random.
If you find it annoying, just try to imagine how frustrating it is for individuals with chronic illnesses. Regardless, some have always sick and in pain – some days some are just able to manage
it (and hide it!) better than others.

‘You just need to snap out of it and push through.’

‘Pushing through’ actually makes someone, and many others with chronic pain and illness, worse.
In Kenya and other developing countries there is no particular policy framework addressing concerns of persons with chronic illnesses although a mention here and there on different framework.
Most families carry the burden of taking care of chronic ill individuals and this affects the economic and social wellbeing of the society at large. The resources used to trat could have been used for other functions [ILO 2017, undp 2016].
Its high time we have particular social protection measure to address persons who have chronic illnesses.
Moreover, one of the major experientials in the disability world and chronic illness which seems to be similar is the way the society expects us to push ourselves beyond our limits
Obviously its so great to push beyond limit but this doesn’t apply to all persons. What the society doesn’t understand persons with disabilities and individuals with chronic illnesses are not a homogenous group.
one is sick or disabled every single day, and know their body and their limits better than anyone – so telling one to ‘push through’ is actually
the worst possible advice. When you’re talking to someone with disability or a chronic illness, remember just because you’d be able to manage something, doesn’t mean
they can or should. Don’t assume someone’s health and limits for them. It totally removes their agency as a human being.
Besides having a disability some individuals might also be having chronic illnesses.
‘You’re too young to be sick!’ or sometimes for disabled persons they say woyee woyee how comes he is blind?

Yep! He or she is young! And sick or having a disability! It sucks. But sickness and chronic illness isn’t exclusively the domain of the elderly; people of all ages can get sick. The society needs to understand that Doesn’t
make their experiences less valid, or their identities abnormal. They just sick in a cool young person way, I guess. I don’t know – it’s a weird thing to
say, so just don’t.

‘If you stopped talking about it all the time and looked on the bright side, you’d feel better.’

I do! To be totally frank, as a blind fellow if I didn’t look on the optimistic side, I wouldn’t be alive right now. Being blind for 23 years now it’s not a walk in the park.
It takes strong will to be in this unjust society.
This also applies to other fellow disabled persons.
Needless to say,
Being chronically ill is also tough as hell, and many chronic
illnesses have strong ties to mental illness. One has to look on the bright side A LOT, otherwise their depression and just the daily battle of being sick
would drag one down and some can’t be able to get out of their beds.

All in all, people should be able to talk about their lived experience as much as they deem appropriate, and disability and chronic illness is not spoken about
enough. Let them vent, let us explain, let them talk about their day!

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.

A letter to Louis Braille from Blind compatriot and Author Mugambi Paul.

Lon post alert.
Happy birthday Louis Braille. You are 210 years.
I celebrate your courage and hope that you bestowed upon the Blind, vision impaired, Deaf Blind and other interested sighted counterparts.
You invented a language which has ensured that we aren’t beggars on the Kenyan streets.
You ensured am not a Cobra a story for another day when underestimation was the order of the day.
#Soyinka Lempaa
Imagine am your cobra would you bring your shoes?
# Tshrooh Benz Mamake Ozil would you cofee me?
Or you shall be the best and enjoy my company like #njeri Kinuthia Hinga?

I pay tribute to you for ensuring we the “Blind” do not become illiterate.
It took 200 years for the United nations to have this commemoration. World Braille Day is observed to raise awareness of the importance of Braille as a means of communication as a full realization of the human rights of the blind and vision impaired persons.
More importantly, Sighted crusaders in this era of digitalization would like to see “Braille” become extinct but as for me and by “Tribe mates” we won’t allow.
We shall continue to demand for alternative mode of communication as enshrined in the article 7 of the Kenyan constitution and article 9 of the UNCRPD.
Even if we receive 2030 vision braille copy in May 2019 while the rest of the country read for themselves in 2008.
We shall not relent.
Article 21 of the UN Convention on the Rights of persons with disabilities obligates member states to ensure that information intended for the general public is in
accessible formats such as braille, and as per article 24 of the CRPD countries are to ensure that in the education system, students who are blind receive
their education in the modes that are most appropriate to their needs, such as braille from educators who are fluent in braille.
Why should the sighted dictate what the Blind and vision impaired language should be?
Imagine if the whole country would be Blind.
All of us would use braille! Big 4 agenda will reach the blind 2025.
Just like you back in our compass days we had to memorize what was being taught or read by Mighty volunteers at Kenyatta university.
Am grateful for those heroes and heroines who were our volunteers.
In other words, am yet to understand how we the “Blind” survived the hardship of the Kenyan education system.”.
Am not being proud here
Many blind and vision impaired persons passed with flying colors and defeated the sighted counterparts who had all access to information.
Imagine if we had equal opportunities what can the Blind and vision impaired persons do?
to say the truth sir Louise Braille many of Blind and vision impaired persons are either teachers or beggars in Africa.
It’s sad to say as the sighted teachers get free teaching aid the blind and vision impaired teachers have to buy braille copies. For those who decided teaching is not their cup of coffee like me this is one of our daily struggles.
No wonder most Blind and vision impaired persons are poor than our counterparts.
This electronic braille device am using today costed arm and a leg while you the sighted counterpart bought a kabloti somewhere in Juja.
Shall we be equal really?
Back to history, the braille system began to spread worldwide in 1868 when a British group, now known as the Royal National Institute for the Blind, promoted braille’s
acceptance. Eventually braille swept the world and brought literacy to the blind in every language.
Although in Kenya not many blind and vision impaired have access to braille or even information.
Marking the centennial of Braille’s death in 1952, the French government proposed relocating your grave from your hometown of Coupvray to The Pantheon in
Paris, where many of France’s most important historical figures are interred. Braille, however, you had requested that you be buried in Coupvray, and the town’s
officials were reluctant to let your body be taken away. So an unusual compromise was struck. Most of your earthly remains were entombed at The Pantheon,
but your hands remain buried at the Church Cemetery in Coupvray.

I promise to visit your historical site so that I will cool my nerves.

Unfortunately, many of Blind and visually impaired persons globally are currently facing
several great problems specially for survival of their existence in
society due to adopting highly negative attitude by concerned
Government authorities in Kenya at national and county levels.
But, in the end, all of us will surely win this battel for survival
for our existence. We shall never forget you. Your legacy on this language lives on.
I hope and trust the newly blinded and vision impaired persons present, and future will join this battle.
What is Braille? Braille is a tactile representation of alphabetical and numerical symbols using six dots to represent
each letter, number and even symbols. Braille is essential in the context of education, freedom of expression and opinion as well as social inclusion as
reflected in article 2 of the Convention on the Rights of Persons with Disabilities.
My dream as public policy scholar and braille consumer is well articulated by my friend #Christine Simpson, “Braille is now more widely appreciated and understood across the community. We see braille included on street signs in many cities; on lift buttons; on
directional signage at transport hubs and in many larger buildings; on pharmaceutical product labels; and increasingly at tourist attractions, museums
and other places of public interest. The portability of braille available thanks to braille enabled devices has also made braille usage more appealing
to students and those who need to access information while on the move.”
At list for the reader today know that in braille language A is written as dot 1.
B is written as dots 1 and 2.
C is written as dots 1 and 4.
The comment box is open.
Join me in opening and shaking the Blind concoction to celebrate this special day.

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