Shielding rights of persons with disabilities Author Mugambi Paul

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.

Australian Chief Minister Award winner

“excellence of making inclusion happen”

 

 

The COVID-19 pandemic has turned our everyday lives upside down. Recently, its impact on persons with disabilities has been felt in almost all spheres of life.

More barriers on inclusion have been identified by different studies by by individuals with disabilities, organizations of persons with disabilities, governments and also other stakeholders.

For many reasons, people with disabilities are among the groups most at risk in this pandemic. Their often compromised health status means they have a high risk of adverse outcomes if they get the virus; their need for personal care and support with everyday living makes it more difficult to take effective precautions such as social distancing; and, the well-documented inability of health systems to respond adequately to people with disabilities means health services will struggle to provide them with quality care during the pandemic.

People with intellectual disabilities in particular will find it difficult to understand what is happening during this time and are very susceptible to isolation and loneliness. For some, the restrictions on visitors to family or group homes, and limited access or support to use online technology, have meant little or no contact with friends and family for months.

The same story is affecting blind and vision impaired persons. Not even many are aware the proper wearing of masks. Most adverts are too visual thus rendering communication barrier.

 

Needless to say, the role of health services in Kenya is by the county governments.

This has seen had failed to quickly recognize and respond to the greater risks of COVID-19 on people with disabilities, leaving this community disproportionately affected by the pandemic. Early emergency plans focused on older people. In Kenya we are yet to see disability specific pans or even outlined measures by both national and county governments on disability corona response.

Additionally, in other jurisdiction we have seen development of disability advisory committees which is quite important in ensuring article 4 of the UNCRPd is implemented.

We hope soon we can have a disability telephone help line dedicated towards addressing the challenges.

Some silver lining has been seen in some nations on the reopening up of economies by provision of disability inclusive plans and actions.

Will African countries follow same way or we shall ensure protection of rights of persons with disabilities ins not achieved?

 

 

 

Why we must dismantle social ableism Author Mugambi paul.

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.

Australian Chief Minister Award winner

“excellence of making inclusion happen”

 

 

As COVID-19 has drastically changed the way we live and relate to one another, Kenyans with disabilities like me have been living in fear, not just of the virus, but of community attitudes to our lives and existence. The pandemic has brought to the forefront deeply ableist ideas held by our society that see disabled lives as disposable. Our lives are not worth living, and are not worthy of the same care and protection. Our deaths do not carry with them the same grief and sorrow that abled deaths do. We are casualties that must be accepted for the greater good of our economy.

This discourse has dangerously manifested in our hospitals, shaping COVID-19 triaging policies and the way medical professionals treat persons with disabilities– with or without the virus.

Globally, its evidently clear some nations they have   disregard for lives of persons with disabilities.

People with disability have been identified as particularly “vulnerable” to this potentially deadly illness. If only we all had the freedom to decide who, and how many people, we have contact with in our own homes.

.

For instance, president of South African President Cyril Ramaphosa has expressed sadness over the death of Nathaniel Julius, a teenager with Down syndrome, during a police operation.

 

I have been continually shocked and angered by triaging guidelines that override shared decision-making processes, fail to acknowledge disproportionate rates of disability amongst already oppressed communities – such as rural and slum dwellers.

I affirm due to the changing times I have had from senior leaders, journalists, business persons who believe we should position life to normalcy.

It’s okay – COVID only really kills old and disabled people. If you’re young, you’re strong and healthy and won’t be at risk. The people who die from COVID don’t really have a quality of life anyway. We really do need to open up the economy for the rest of us. With resources so scarce and hospitals overwhelmed we need to priorities those of us who would actually survive.

 

 

For many persons with disabilities, hospitals are already traumatic places where we are spoken over, invalidated and dehumanized. Frequently they are places that deprive us of care, brutalize our bodies and result in our death. How do we begin to confront the even more explicit violence in our healthcare system COVID has triggered? When I think about the not-so-distant future, and try to imagine how our disability community is coping, I am filled with anguish thinking of the scars these triaging narratives will leave. I think of the trauma being resurfaced for hundreds of thousands of disabled people who have already suffered mistreatment at the hands of healthcare systems, and I think of those persons with disabilities who would’ve survived COVID, had things been different. I vow to remember them and keep working towards a world grounded in disability justice, where no one is disposable and we can receive the care that we need. As Mpofunamba1 articulates in one of the music track attitudinal barriers do exist where women with disabilties are even questioned which animal impregnated you. As f women with disabilities are not supposed to enjoy sex and give birth. Several studies have shown increase of gender-based violence against persons with disabilities.

Based on a biased understanding of appearance, functioning and behavior, many consider disability a misfortune that make life not worth living. To promote the rights and dignity of persons with disabilities, we must dismantle social ableism and embrace disability as a positive aspect of the human experience.

The world’s population is ageing. By 2050, people over the age of 60 are expected to account for 21 per cent of the global population. About half of them will live with a disability, making this the largest community of persons with disabilities—and one of the most stigmatized and neglected.

The deprivation of liberty on the basis of disability is a human rights violation on a massive global scale. As Mpofunamba1 I say it is not a “necessary evil” but a consequence of the failure of States to ensure their obligations towards persons with disabilities.

 

 

 

Parents, You Matter!” Guest author Alison

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

 

I have been thinking hard about how important a parent is in the life of a special needs child…

It’s been a while since I wrote anything about autism. It’s been a crazy season – being home, working from home, and helping the kids with their schoolwork, etc. There is something I have learnt during this season, though. Parents are very important. Parents matter. Parents are special people.

Parents, let me encourage you today.

You know your child better than anyone else

Picture this. You take your child for a therapy session, and they are crying all through. The therapist tells you that things will get better with time, but at the next session, things are the same. You try a few more sessions, and nothing changes. Then you start to notice that your child cries every time you are leaving for the therapist’s clinic, or every time the therapist is just about to get to your house for a session. At this point, you, as the parent, make an executive decision and stop the sessions. Why? Because you know your child best.

I have been there. I have had to make this decision several times. Initially, I felt that I should have tried just one more time, then I realized that it was up to me to make sure that my child was happy and at peace. Nobody else could have done it for me.

You communicate best with your child

Maybe your child is not yet speaking. Maybe you are longing to hear that first word. Can you tell, however, when your child is sad? Can you tell when he or she wants to have a meal or go to the bathroom? Most likely you can, especially when nobody else can tell what your child is trying to communicate.

How does this help? Imagine you go for a therapy session, and the therapist asks your child to do something. Your little one does not respond, and the therapist is stuck. You then offer to try and talk to your child, explaining the instructions. He or she quickly responds by doing what the therapist has asked. Do you see what I mean? Parents always know how to communicate with their kids.

Parents, don’t beat yourself up just because your child is not speaking. There are other ways that kids can communicate like sign language, using technology, writing, using pictures, etc. Find the best way to communicate with your child.

You want to help your child out of love

Nobody wants your child to acquire skills as much as you do. Nobody understands how important it is for your child to be independent like you do. Your love for your child is what drives you to hire therapists, follow the home program, buy equipment, etc.

You may, however, find that the people you hire to help your child are doing it for the money. Others may be doing their job just because it is a job, not because they love working with your child. The bottom line is, your love for your child is what will drive you to keep going, to keep learning, to keep training, and to keep waiting patiently for a skill to be mastered.

I just want to encourage a parent here. The world will not always accept our children for who they are. It is up to us to show them how to love children who are abled differently, and to show them that being different is not a bad thing. Also, surround yourself with like-minded people, people who will support you on your parenting journey, people who will love and accept your child just as they are, and people who may even offer to watch your child while you catch a breather!

You are your child’s greatest resource

Parents, you are your child’s greatest resource. You provide them with love and care. You make sure their environment is conducive to learning. You purchase all that they need for therapy, school, etc. You feed them and clothe them. You teach them the things that only a parent can. You pay for therapy sessions and school. Parents, you rock!

In this season when accessing services is hard, I believe that parents can still do something with their children. What have seen your therapist do that you can do at home? Find out what activities your child can do to improve in areas in which he or she has challenges. For example, if your therapist has mentioned fine motor skills in the past, look for videos with fine motor activities you can do at home. Also, for those who are doing teletherapy, it’s important to remember that a good session works best when you are there to help with setup, resources, etc. You can also opt to get a therapist to come up with a good home program for your child which you will implement.

See how important you are, dear parents?

One last thing, though. You need to recharge from time to time otherwise you will burn out. Find a way to catch a break whenever possible. You need it.

 

How Do Disabled People Feel About Discussing Their Disabilities? Guest author A Pulrang

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

 

 

 

For people with disabilities, talking about our disabilities is complicated.

Sometimes, when people ask their perennial questions, or just look at us in a certain way, we can almost hear them say it:

“Go on! Do that thing you do, where you remind me how my own little problems aren’t so bad. Do that ‘inspiration’ thing that makes me feel better about myself for admiring you.”

What does it mean when a wheelchair user speaks at a political convention? What does it mean when a blind person gives a motivational speech, when an amputee engages students or employees on “disability awareness?” What does it mean when any disabled person, in the ordinary course of their day, is asked to explain their disability, or tell their disability “story?” And what does it mean when the disabled person tells their story? And what does it mean when they say, “No, not today. Not here. Not for you. I’m not here to be your inspiration.”

From a non-disabled point of view, it must sometimes seem like we disabled people can’t make up our minds. That’s because the whole subject is fraught with conflicting choices, each with pluses, minuses, and even moral implications.

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Do we raise awareness, or mind our own business? Do we welcome questions from the curious, or draw clear boundaries to guard our privacy. If we want a better world for disabled people, what is our own obligation to further that goal? Will we share our most profound experiences and thoughts about disability, and for what purpose — or whose?

Some of us are quite anxious to tell our stories to anyone who will listen. It can make us feel less alone with our burdens and traumas. Some of us draw strength and purpose from telling our stories of triumph over adversity, dispelling myths about disability, or advocating for better disability policies and political power for disabled people. Despite popular rhetoric about “not letting disability define us,” a great many of disabled people do organize much of our lives around our disability experiences and identity, and we do it intentionally, joyfully.

PROMOTED

At the same time, disabled people have mixed feelings about sharing our experiences with others. We all have different ideas about the pros and cons of sharing our stories, raising awareness, and “educating” non-disabled people about disability. And what we think about it can change from day to day, from person to person, and situation to situation.

To understand how disabled people struggle with these questions of sharing, educating, advocating, you need to explore some of the positives and negatives we juggle every day.

Positives

First, some disabled people find sharing their disability stories therapeutic. Many who were disabled later in life need to tell how they became disabled. And talking about our disabilities and everyday struggles with ableism can help all of us clarify how we feel about our disabilities.

While few of us like to admit it, many of us do in fact crave sympathy or at least empathy. Getting a positive, supportive response to our disability stories can be validating. It can, at least in the short term, compensate for some of the negativity and unvarnished prejudice we encounter regularly. And genuine empathy can actually make our lives easier by reducing misunderstandings and judgment.

There is also the practical benefit, or necessity, of sharing something about our disabilities in order to get help and accommodations that we need to survive, and that can help level the playing field for our ambitions. Having to reveal private information in order to obtain equal opportunity is a constant burr in our sides. But it is the most consistently beneficial payoff for this awkward exchange.

Finally, some of us choose to embrace being spokespeople of sorts for the disability community, and the cause of disability rights and justice. Some disabled people commit themselves to advocacy, motivational speaking, writing, and educating the public … all of which call for some degree or another of personal sharing. These commitments can give purpose to a disabled person’s life, if purpose is missing or uncertain. It can give meaning to a person’s disability, if meaning is important to them. For some of us, it’s also a living, and a potentially useful one.

The benefits available to disabled people for sharing our stories, experiences, and feelings are fairly familiar. It’s the negatives people tend to forget, but that are constantly on disabled people’s minds, precisely because they are so common and cut so deep so often.

Negatives

For a start, constantly retelling our disability stories can be a seductive trap. We tell it again and again, sometimes on request, or else in search of some resolution that never comes. We stagnate or worse, spiral further into depression and trauma. Also, other people’s curiosity about disability and disabled people’s stories tends to have a very short shelf-life. While they start out craving answers and compelling narratives, most people quickly get sick of them, especially if they fail to fascinate or uplift. Regardless, fixation on our own personal stories also makes it less likely that we will discover the broader disability community and disability issues, and that is a real loss.

Another problem is that many of us quickly come to realize how easily the visibility we craved for so long, and we finally seem to be getting, can be misused, no matter how carefully we craft our messages. As any disabled person who has addressed a political audience can attest, you never know just how much of your specific message gets through, and how much is drowned in a sea of sentimental responses to our very presence. Do audiences come away with a new understanding of health care, or home care, or accessibility? Or do they leave uplifted or amazed at how articulate the disabled speaker was, and how brave?

The most important thing to remember, but so many people miss, is that sharing our stories and educating people about disability always costs us something. The novelty of attention and praise eventually wears off, and you find yourself giving and giving, with little in return. Even if you are being paid … and far too many disabled public figures aren’t paid for what they give … sharing yourself, your passion, and your hopes with strangers takes a toll. And even the best audiences have little ability to give back.

Yet, disabled people are often expected to share our stories and enlighten others on disability matters … as if it’s our unique duty and special mission in life as people with disabilities. A calling is a personal choice. A duty is more of an imposition. A lot of people don’t understand the difference. On the personal level, friendly curiosity about our disabilities can quickly turn to sour resentment when we don’t immediately satisfy it. And demanding to be “educated” is often used as a “put up or shut up” answer to being called out for accessibility failures or other kinds of ableism. If we don’t agree to open ourselves up at all times and give free education, then ongoing ableism is implied to be our fault.

So, when is it okay, and when is it inappropriate to ask disabled people for their stories, or for help on disability issues?

Situations

Obviously, it depends partly on what kind of relationship you have with the disabled person. It’s rarely if ever appropriate to ask a disabled person you don’t know to tell their story, or explain intricacies of the disability experience to you. Asking a coworker or casual acquaintance may be alright, if you do it with care and listen for signs of receptiveness or reticence. You can deepen your relationship with family or close friends with disabilities, by inviting them to share deeper experiences and feelings. But this kind of closeness should never be mistaken for open-ended permission. Having a family or professional connection to disability isn’t a special permit to pry. Neither is having a disability yourself. A disabled person may trust you more if you’re disabled too,, but your disability status doesn’t guarantee access.

It also depends on the time and setting. Certain subjects and avenues of conversation are appropriate in some places and occasions, out of place in others, and totally bizarre or even creepy in still others. Think of how doctors and lawyers feel when people at cocktail parties ask them for medical or legal advice. It’s often like that for disabled people. We feel like everyone’s public encyclopedia of all things disability. No place is taboo, no subject off limits. At any moment, we can be prayed over in the frozen foods aisle, asked in a coffee shop how we have sex, or grilled in the lunchroom on which disability terminology we use.

If you want to engage with disabled people, and learn about disability issues and culture, that’s great! Please do both. But remember that each disabled person is an individual, and we each make our own decisions, using our own criteria, for when and how we want to share, explain, and educate others, from perfect strangers to those closest to us.

In the end, sorting the good from the bad, the appropriate from the burdensome, isn’t that complicated after all. It’s a bit like intimacy and consent. Talking about disability with disabled people can be enormously rewarding for both parties, but only when the disabled person is a willing participant. While some of us consciously choose to be as open and forthcoming as possible, none of us feels that way all of the time.

Above all, no disabled person should ever feel obligated to share, or shamed for not sharing. this is also my school of philosophy . as a Public policy diversity and inclusion expert I celebrate diversity in full.

Dream of Corona from a Disability lense Author Mugambi Paul

With the recent occurrence and high prevalence rate of Covid 2019 in Kenya having recorded over 32 thousand cases in August 22nd.

I wish to retaliate what front line soldiers and policy makers need to put in place to ensure those individuals with disabilities and those who are acquiring a disability in this period are well taken care of and granted the best of serf=vices.

 

The Kenyan health workers should

  • Know about people’s rights
  • Protect people’s rights

People should get the health care they need during coronavirus.

Convention on the Rights of Persons with Disabilities is a law that protects the rights of people with disability around the world.

The Convention is called the CRPD for short.

The CRPD says discrimination is never ok. CRPD says people with disability

  • Have the same rights as other people
  • Must be respected

The CRPD says people with disability have the right to

  • Be included in their community
  • Make their own decisions and

During a pandemic some rights are very important.

  • The right to life
  • Good health and health care
  • Information like Easy Read.
  • People with disabilities deserve to get treatment and medication just like other persons.

People with disability have the right to make choices about their health.

This includes having support to make choices. Supports include

  • Aids like a cane or wheelchair
  • Support workers or family

Communication:

People disability have the right to communicate how they choose.

  • Kenyan sign language
  • Braille
  • Easy Read

Plain language.

Last to be served last one to eat: Author Mugambi paul

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.

Australian Chief Minister Award winner

“excellence of making inclusion happen”

Globally, Evidence is emerging that persons with disabilities are being disproportionately affected by the Coronavirus pandemic and emergency policy measures being undertaken are not enough.

This is to say the marginalization that existed before covid is still being multiplied and increased due to lack of inclusive disability response starting from the world health organization and the governments.

 

The COVID-19 crisis is taking a grim toll on human lives across the globe. Although the complete impact is yet to be fully comprehended. The coronavirus pandemic has changed almost every aspect of normal life, from grocery shopping to work, from exercising to socialising. While the changes, brought on by fear of infection and the state-mandated quarantine –– which has been in place in Kenya since March 20 –– are difficult and inconvenient for everyone, for those living with disabilities across Kenya, the virus crisis has posed a unique threat to their ability to access basic healthcare, education and to their own individual autonomy. 

 the risk the pandemic

is exposing for gains made towards the Sustainable Development Goals (SDGs) is becoming evident. What this global emergency is also revealing, is that

these 17 goals are, in fact, our best option to recover better and to overcome similar crises in the future.  

Policy statements need to manifest in concrete action.

In other words, inclusion and empowerment of persons with disabilities is essential to ensuring that persons with disabilities are not left behind.

 

 

 As governments rush to respond to the virus, it is more critical than ever to guarantee that measures taken are fully inclusive.

 

 

of persons with disabilities and prevent human rights violations from taking place. More importantly several studies from the UN body, research institutions, disability sector, individual testimonies and government have shown no disability desegregated data has been recorded up to date. Disability is prevalent throughout Kenyan society, though that prevalence isn’t always represented in policy-making. No less than 15. 10 percent of the population of Kenya lives with a permanent difficulty or limitation, according to organization of persons with disabilities data.

 Additionally, disability is present in 2.2 percent of Kenyan households, according to official data of KBs 2019 census. 

 

 

As a public policy scholar am yet to understand why governments are able to give geographical location, gender age and not disability desegregated data !

Is this not a form of exclusion?

At least 70,000 Americans with disabilities have died in the last 120 days without being on the radar. Those in nursing homes are referred to as ‘elderly,’

with ‘underlying conditions,’ or ‘vulnerable.’ These are euphemisms that avoid using the word “disability”. This diminishes and ignores civil rights protections

for millions.

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Policy makers need to realize that when persons with disabilities are not being counted, they are being locked out of interventions.

The distribution of the cake needs to be served in an inclusive manner.

 

For many countries in Africa they have formed emergency response committees with uyt representation of persons with disabilities.

Should disability persons organization publish experts with disabilties since governments have failed to ensure representation?

Persons with disabilities in low income countries face substantial challenges in terms of achieving self-representation,[1] inclusive employment[2] and integrated education.[3] The Convention on the Rights of Persons with Disabilities (CRPD)[4] outlines a framework for the inclusion and self-advocacy of persons with disabilities, while the Sustainable Development Goals (SDGs) commit to ensure that global development processes are disability inclusive.

 

 

 

Moreover, several general protocols have been made but without any reference on how interventions will be carried out for persons with disabilities.

Additionally, after 4 months of COVID  2019 several countries have started to some sort of disability protocols, of which they contain minor concerns of persons with impairments.

 

Its only south Africa who have made major attempt of having disability inclusive response protocols and interventions.

Obviously, this is a step in the right direction but more needs to be done to ensure no one is left behind.

Likewise, in other countries like in Kenya having sign language interpretor on the TV screen during the Corona state address seem to be an already concluded assumption that they have addressed the communication and inaccessible information gaps.

Does this mean that all persons with disabilities have accessed the information?

the Kenyan social protection policies seem to be driven ‘smoothing

out’ variations in incomes over the lifecycle, I argue  that ‘the dominant effect

of social spending in the Kenya is to redistribute income across people’s own life. For example the recently launched “Kazi kwa mtaa programme”

aids citizens to pay taxes of what they have.

 

The policy brief offers 4 recommendations on how governments can best mitigate the economic fallout of the COVID-19 crisis and protect informal workers:

list of 4 items

  • Continuing emergency income support for workers and businesses operating in the informal economy 
  • Reforming social-assistance schemes to extend beyond the poor—both horizontally and vertically—to ensure that the “missing middle” will have access to

them

  • Ensuring that social-assistance measures are a part of a larger relief package and include loan repayments, rent and utilities payments, and tax breaks

on essential goods

  • Safeguarding women’s access to these benefits

list end

On the other hand, In the book Good Times, Bad Times challenges popular misconceptions about the welfare state

. The book deconstructs the view that ‘welfare’ is exclusively

about out-of-work benefits and that those who are in receipt of such benefits are

somehow ‘other’ to the rest of ‘working Britain’ (a term favored by our current

political leaders). Hills challenges these misconceptions with detailed evidence

demonstrating that in fact we all benefit from the welfare state over the life-course,

getting back what we put into the system. The welfare system in Kenya and most African countries

covers universal entitlements such as education, health care, pension provision, and

youth protection except for the very wealthy), and as such it is something that all of us

make use of at varying points in our lives: when we have children; when we become

unwell; when we need healthcare; and when we grow old.

Hills explains that whilst the welfare system is redistributive (poorer households

do get more out of the system and richer households put more in), the system is

also redistributive for individuals over the span of their own lives – so effectively

he argues that we are all paying for own services and benefits in a kind of ‘savings

bank’ (67). This is the case for all families, with even the poorest 10th of the population

paying in half of what they take out. The rich contribute more because of

the principles that the system was founded on: that benefits and services should go

to people according to their need (as opposed to whether they can pay for it); and

that the taxes we pay should be in proportion to our incomes.

 

In the COVID-19 pandemic, persons with disabilities may face heightened risks, such as increased exposure rates, due to numerous barriers in the humanitarian response. For example, barriers in accessing life-saving information, protective measures and other essential humanitarian services on an equal basis with others. Gaps in the preparedness and response plans increase these risks even further. 

As we hurtle towards the 2030 Sustainable Development Goals deadline, governments are accelerating investments in both social protection and disability and gender equality. This presents

an opportunity to gain a deeper understanding of how social protection can not only reduce poverty, but also contribute to disability mainstreaming. Disability mainstreaming is

vital to achieve sustainable poverty reduction through social protection. In turn, poverty reduction, for instance, through greater income equality and

security provided through well-designed social protection promotes disability inclusion.  

Social protection, particularly in the form of cash benefits, has already proven its ability to 

address multi-dimensional and intergenerational poverty for persons with disabilities of particular are men, boys, women and girls with disabilities

 in different contexts, including increasing women’s savings and investments in productive assets or improving girls’ school enrolment and attendance. Yet, this

potential can also be belied if programmes are poorly designed or executed, resulting in further entrenching prevailing gender inequalities. More needs

to be done to understand how and why programme design and implementation can either strengthen or worsen impacts for women and girls.  

  1. All means all! we cannot have proper digital inclusion if we leave people behind;
  2. We need stronger connections between schools, families and students because connections lead to commitment

list end

 

       

What lessons can African nations learn?

We need to activate disability emergency mode when the glbe is doingit not just to react after the race has already kicked off.

We may have lost many persons with disabilties either through hunger, loneliness, lack of health services, covid itself and other preexisting conditions.

Organizations of persons with disabilities need to ensure duty bearers accountable to them and if need be seeking legal address. For instance. 

Over 1,000 web accessibility lawsuits have been filed in 2018.

Companies like Nike and Amazon are being sued for failing to make their content accessible to deaf, hard of hearing, blind, and low vision users.

       

Conclusion:               

Covid19 has created new societal challenges and exacerbated existing ones however plethis is also an opportunity to rebuild our society in a more equitable

Corona 2019 why did you’ve it imprison the blind? Author Mugambi paul

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.

Australian Chief Minister Award winner

“excellence of making inclusion happen”

 

 

 

As a blind person for the past 23 years, I thought I had seen it all! Oh boy, was I ever wrong! After many years of practice at being blind, I have found something that is sending me for a loop.

COVID-19 has done it to me!

My world now is cold, untouchable, lonely at times–which is something hard to handle. I am not so sure I could survive the new world we are all experiencing if I did not believe that my “Heavenly Father” would not be here to catch me when I fall.

Going for a walk, if anyone is passing me by, I’m always wondering if they will possibly get me sick. Going to a market or moll and trying to get assistance, while everyone wants to run away from you. No getting together with friends because no one wants to come and visit, scared we pass the virus to one another. Walking onto a bus and being scared that the person who previously occupied the seat you are now at had the virus.

Or, a simple walk in a park and getting lost because all the roads have no traffic to give me a sense of direction. Yes, to me, this was probably one of the hardest things to handle. My world is open when I have sounds of traffic or sound barriers to help me to be able to be independent daily.

My rural places like playing fields and parks is a place I have known for the past 23 years and I am very used to going there. Now this park and field of play is very different for someone who has no sight. No children in the playground, nobody bringing the dogs to the park, no one bringing me coffee and conversation, and no cars to give me direction as to where the roads are.

The world I knew had familiar sounds to help give me direction, and this I knew was a world that was easier to deal with in my daily life. I also use a white cane and now people are scared. Put jump very first since thy know viruses can spend time on metallic objects. How does a blind person keep social distance from a sighted guide?

 

 

I also have had others say that many in the markets get upset when I use the white cane.

Now I can honestly say that the world as a blind person is hard to cope with! If I did not live in a house with a yard and with a great garden to take care of and give me joy, my world would have been lonely and hard to handle for the foreseeable future.

Meetings online may give me many hours of involvement with my community, but the time spent on electronics is starting to drive me crazy.

I love to attend meetings in person and the opportunity they provide to get to know others and how they are engaged in our community. Now this opportunity is also lost, and I find that the computer does not bring the same spirit into my daily routines.

So, for all of these reasons, “blindness” has imprisoned me again. But this time it feels like I have moved from a minimum-security prison to a maximum-security one.

Disabilities that Complicate Substance Abuse Treatment and How to Overcome Them Guest author Patrick Bailey

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

 

The last thing a person recovering from alcohol addiction needs is yet another obstacle to getting back to the life they know and love. Well-managed inpatient drug and alcohol treatment centers should ensure a physical disability does not impede full recovery.

Disabilities and Substance Abuse

People who suffer from physical disabilities have a higher risk of alcohol and drug abuse. The National Rehabilitation Information Center (NARIC) shows that about half of Americans who suffer from a disability are also likely to suffer from substance abuse (co-occurring disorders or dual diagnosis). That’s compared to 10% of the general public.

Disabled World reports that those with mobility issues—disabilities like amputated limbs, spinal cord injuries, orthopedic disability, arthritis, deafness, vision impairment, or multiple sclerosis—are two to four times more likely to abuse drugs or alcohol.

Yet an anonymous survey reveals that of those suffering from a spinal cord injury or traumatic brain injury (TBI) and also seeking addiction treatment, about half are refused admission to inpatient drug and alcohol treatment centers.

A report from the American Association on Health and Disability (AAHD) shows that physical accessibility negatively impacts the success of treatment for those with disabilities every day.

According to the Centers for Disease Control and Prevention (CDC), one in five American adults has a disability. Most worrisome for those in an inpatient facility are mobility and visual or auditory challenges that prevent them from taking full advantage of the treatment offered them.

Alcohol and drug abuse can complicate treatment for the physically disabled by interfering with therapy, rehabilitation, counseling sessions, and medications.

Overcoming Barriers to Treatment

For this reason, a physically accessible treatment center is essential to those who have both physical limitations and addiction challenges.

Group therapy and support groups can dispel social isolation and offer a healing environment for both those who suffer from addiction and their families. However, an additional layer of support is required for those with an additional disability.

Inpatient drug and alcohol treatment centers can offset this by removing or altering potential barriers to their disabled clients.

The Americans with Disabilities Act (ADA) requires that all private accommodations and commercial facilities that are not residential facilities remove barriers to communication and access that would negatively affect individuals who are disabled.

For this reason and others, a viable treatment facility must accommodate those who are disabled, ensuring they have complete access to the facility.

Making Rehab Accessible

Three factors that can affect a person’s ability to function:

  • A person’s mental, emotional, and/or physical state doesn’t function properly. This can include hearing or memory loss.
  • Activity limitations. Inability to carry out normal tasks.
  • Participation restrictions. A person who cannot participate fully, or not at all, in daily life activities because of their limits. This impacts the way the individual engages in work, social, recreational, or health-related activities that are critical for their health and well-being.

Some of the modifications needed for the disabled include:

  • Ramps and elevators that offer mobility-specific features.
  • Wider doors and hallways for those in wheelchairs or other mobility devices.
  • Power-assisted doors.
  • Even, slip-proof floors.
  • Prominently displayed braille and other sensory navigational features.
  • TTY options on phones for the hearing impaired.

Other Physical Disabilities

Physical disabilities are not confined to one’s ability to walk without aid. They may result from a birth defect, an accident, a disease, or age. Anything that prevents or diminishes a person’s ability to engage in social activities is a disability

Physical disability includes chronic health conditions that prevent a person from participating fully in their day-to-day life. This includes a variety of autoimmune diseases. Some diseases can become a secondary disability that must be considered in one’s drug or alcohol rehab.

Examples include:

  • Asthma
  • Allergies (environmental and food)
  • Crohn’s disease
  • Irritable bowel syndrome (IBS)
  • Ulcerative colitis
  • Diabetes
  • Migraine headaches
  • Cerebral palsy (CP)
  • Cystic fibrosis
  • Epilepsy
  • Fibromyalgia
  • Multiple sclerosis
  • Rheumatoid arthritis
  • Spina bifida
  • Spinal cord injuries
  • Loss of a limb
  • Traumatic brain injury
  • Cancer
  • Lupus
  • Sickle cell anemia

Learning Disabilities

The best inpatient drug and alcohol treatment centers also make accommodations for clients with learning, sensory, and mental disorders.

A learning disability alters the way a person can listen, speak, read, spell, and/or think. Such a disability impedes a person’s ability to process, recall, and/or express information.

Clients with memory problems often have trouble communicating and have a hard time performing school or job-related tasks.

Chronic health conditions such as physical disabilities are risk factors on their own. Add to that a substance abuse problem and removing as many barriers as possible is essential.

The missing 11 opportunities in 2020 for disabled Kenyans Author Mugambi Paul

Background:

Tribalism and Gender come up frequently in both social media and mainstream media discussions in Kenya.

But what about disability?
It’s a known fact that The largest minority group in Kenya constitute about 7 million.
but despite that huge number, many disabled people face challenges reaching their full potential in social, economic, cultural and political spheres.
How do we break the chains?
as a public policy scholar and being blind I would like to author the missed opportunity of the Kenyan disability movement.
This is to say I highly understand the barriers that disabled Kenyans face in sea, land and air.
This is coupled with inadequate policy and legislation execution.
I opine that three quarters of the disabled Kenyans are poor, and this is catastrophic
This problem cannot be address with the normalcy which is currently perpetuated by the current disability movement
We have to adapt new way of thinking and be ready to make the systems work for persons with disabilities.
Miss opportunities:

1. The treasury normally conducts public budget engagement every year both at national and county levels: the disability movement could have presented their own version of budget which could have been adopted by the budget committee.
2. BBI committee: the disability movement could have advocated for representation in the BBI task force team.
3. Housing agenda: the Kenyan disability movement could have demanded 15 % of the new housing schemes should be fully accessible.
4. Opportunity at the national employment authority: the Kenyan disability movement could have demanded a robust plan and execution of disability employment services targeting disabled persons.
5. Accessible toilets: the Kenyan disability movement could have emphasized at list enforcement of usage of accessible toilets in most government and private entities instead of the toilets being used us storage facilities.
6. Accessible bank notes: the Kenyan disability could have demanded the central bank to issue accessible bank notes instead of allowing the president to cheat the Blind persons like me as evidenced in June 1st, 2018.
7.
Organizational culture: the Kenyan disability movement should mirror itself and see if it’s being an enabler of inclusion or it’s a talk show entity.
This is to say Beyond just bringing diverse disabled people together, persistent initiatives, specific behaviours, and intentional practices that support inclusion are needed for tapping and invigorating the potential of diversity and for leading to disability inclusive organisational cultures.
Thus, having proper leadership commitment, accountability, and contextualization.
8. utilization of online and live streaming services during workshops and conferences: at this era of digitalization and the faster collection of both true and fake news the Kenyan disability movement could have had robust plans of ensuring combining the old way of board room meetings with technology in order to collect diverse views and opinions.
9. Identity registration: the Kenyan disability movement could collaborate with the interior ministry of the super CS Mating’I and ensure the disabled get the disabled card much faster just like the planned Identity card and passport issuance.
10. Bodaboda transport: 80 percent of disabled Kenyans are mostly likely to use bodaboda for accessing public places but the Knyan disability movement went mum as the interior ministry developed regulations. Obviously the bodaboda reforms will have adverse effects on the wanjikus with disabilities.
11. Secondary school transition: the Kenyan disability movement could have joined the ministry of education and campaigned for grater transition of learners with disabilities. Moreover, the disability movement could have pushed for the ministry to fund all student with disabilities joining form one.
Could the 4.811 students be learners with disabilities?
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 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.

Inside the Kenyan disability corridors of power Author Mugambi Paul

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

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

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

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

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

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.

https://m.facebook.com/groups/782290015159886?view=permalink&id=1860411574014386&refid=46&__xts__%5B0%5D=12.%7B%22unit_id_click_type%22%3A%22graph_search_results_item_tapped%22%2C%22click_type%22%3A%22result%22%2C%22module_id%22%3A8%2C%22result_id%22%3A%22100000309023349%3A1860411574014386%22%2C%22session_id%22%3A%2294af8b3a8130b8cd80ffb146320fa7d7%22%2C%22module_role%22%3A%22FEED_POSTS%22%2C%22unit_id%22%3A%22browse_rl%3Abab2c8d9-58c6-03bb-6970-555f4984237d%22%2C%22browse_result_type%22%3A%22browse_type_story%22%2C%22unit_id_result_id%22%3A1860411574014386%2C%22module_result_position%22%3A0%2C%22result_creation_time%22%3A1539597936%7D&__tn__=%2As
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.