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.

Will the “Disabled” Kenyans cry foul after being left in Coronavirus conversations? Author Mugambi Paul

In order not to live the disabled Kenyans who are the largest minority, who make up 15 % of the population.
I opine, disabled Kenyans they deserve not to be left behind.
There is an urgent need for Ministry of health in Kenya to address the rights and needs of disabled person throughout all COVID-19 planning and response.
In other words, for maximum community results in the recent updates from the national and county governments there is the need to close the glaring gap of inclusivity.

Available facts:
Children and adults with disabilities and older adults are 2-4 times more likely to be injured or die in a disaster due to a lack of planning, accessibility, and accommodation. Most people with disabilities are not inherently at a greater risk for contracting COVID-19, despite misconception that all people with disabilities have acute medical problems.
Kenyan government Actions taken now can make a big difference in COVID-19 outcomes
Additionally, the disability sector from both the state and non state actors need to raise the voice not just to remain mum.
Are disabled persons represented at the national emergency committee established by the president?
Are the needs of the disabled catered for in the contingency plans?

Lessons learnt:
One of the greatest lessons in the fight of HIV aids in Kenya is that the disabled persons were not involved nor consulted in the plans strategies for combating the menace.
It took few disability stakeholders to get the national aids control council to ensure inclusivity is realized.
When shall the disabled stakeholders learn not to be left behind?
Should the disability society be involved after the rest of the population? we
Moreover, USAID was very critical in supporting disabled stakeholders in achieving active disability engagements.
Worst still, many disabled persons weren’t aware of how to prevent themselves from the HIV AIDS infection. Many disabled Kenyans died, and many being taken advantage of by the society perceptions and behaviours [HI 2007]
This is because of the late response to the needs of disabled persons.
Several studies showed the greater involved of disabled Kenyans in awareness, contributed to reduction of stigma and discrimination associated with disability and HIV aids.
It also ensured representation in National aids committees, and prevention promoted reduction of spread of the disease. [NACC 2008, Liverpool 2007 HI 2007[.

Role of the disability sector:
Needless to say, disability stakeholders can play a crucial role by facilitating support to the ministry of health on inclusive strategies which will address the needs of the disabled Kenyans.

Legal Obligations and Training
On the other hand, Public and private agencies that provide services to persons with disabilities must be aware of their legal obligations and must train their employees appropriately. When public and private agencies and businesses are unclear about their legal responsibilities, there are no limitations in providing greater than minimum levels of support and services to persons with disabilities. Lack of understanding is NEVER an acceptable reason for failing to meet legal obligations, including throughout emergency circumstances.
Furthermore, the ministry of health has a has a legal obligation to provide equal access to public health emergency services to disabled Kenyans, including throughout a pandemic since our president issued an executive order
Coupled with the support one of the pillars of the big 4 agenda, of Kenyan 2010 constitution on right to access to health services and international conventions.

Needs of disabled Kenyans:

I observe disabled Kenyans require the same resources and assistance that all citizens deserve.
in other words, adequate information and instructions, social and medical services, and protection from infection by those who might contracted the virus. However, some disabled Kenyans may have needs that warrant specific reasonable accommodation by the public and private sectors that may not be necessary for Kenyans without disabilities. This is not much to ask since the current strategies by both national and county governments have not addressed the reasonable accommodations.

For instance, Communications Authority has approved sending of bulk information messages on coronavirus by the Ministry of Health to all subscribers of local mobile phone operators.
I beg to ask:
Are persons with intellectual impairment, Deaf, Blind, psychosocial disabilities able to consume this information?
1. Can the government provide alternative formats of communication in awareness raising? Disabled Kenyans need to be informed of why Ministry of health believe that certain actions are warranted, to be given an opportunity to ask questions and receive answers in an accessible format, and to be afforded the opportunity to object and propose alternative solutions.
2. Another example, the Bagathi hospital has been designated to be the official self-quarantine place.
Has it met accessibility standards?
Are the beds easily accessible and user friendly to Kenyans with mobility impairments?
Moreover, in some places, the distribution of protective equipment, food, and medical supplies might be warranted. If Point of Distribution locations are established, government and private stakeholders must address how these supplies and equipment will be distributed and accessed by disabled Kenyans, elderly and others who have difficulties in movement and lack means of travel. Disabled Kenyans have the right to receive services in the most integrated setting appropriate to their needs.
All in all, the existing legal protections of disabled Kenyans remain in effect under all circumstances. These protections are not subject to waivers or exceptions, even during public health emergencies or declared pandemics.
I Hope there will be no contrition on this journey of ensuring disabled become part of the solutions.

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.

Disabled Kenyans outcry of the elusive accessible housing plans: Author Mugambi Paul

According to the Convention on the Rights of Persons with Disabilities it recognizes the right of persons with disabilities to adequate housing and their right to social protection (article 28). The Convention was adopted in 2006 and ratified by 180 countries, where Kenya is one of the earliest countries to do so.
more importantly in 2017 Kenya adapted the big 4 agenda where affordable housing is one of the key issue.

Where are we:
Arguably, there have been back and forth debates on how the public will be entitled to the affordable housing schemes in Kenya.
There has no been any agreeable way between the 3 arms of government and the public at large.
The lack of public participation in the affordable housing seam to have reached rock bottom.
This is coupled with lack of clear policy frameworks which could ultimately have guided the process.
In Jamuhuri 2019 the president of Kenya seem to have soften the stand on involuntary housing contribution. This has led to treasury in 2020 February budget policy estimates to the Parliament to say that it will allocated 0 budget for housing plan.
Although the private sector is investing on the housing agenda.

What’s happening at the National level?

In 2015, the UN Member States adopted the Sustainable Development Goals which call for access for all to affordable housing and implementation of appropriate social protections systems for all, including persons with disabilities (Goals 11 and 1).
But Kenyans with disabilities remain largely invisible in the implementation, monitoring and evaluation of these commitments. Notably, Lack of reliable and timely data, evidence and research on persons with disabilities continue to pose challenges to the inclusion of persons with disabilities and the full implementation of Sustainable Development Goals, including Goals 1 and 11.
This is affirmed by the latest Kenya bureau of statistics 2020 where disabled numbers dwindled.
Lessons for policy makers in the disability sector:
Mobilization of expertise on disability inclusion in housing agenda needs to be considered.
Disabled persons organizations need to participate in public participation forums to ensure their issues are hard by the ministry of housing and transport.
The disability sector policy makers need to resource and facilitate disabled Kenyans to this process of ensuring inclusive measures are observed.
The disability sector should demand 15 % of the housing units being constructed to be accessible and owned by disabled Kenyans.
The UN report 2018 shows that despite the progress made in recent years, persons with disabilities continue to face numerous barriers to access affordable and adequate housing and a disproportionate number of persons with disabilities are homeless. They face many barriers that prevent them from enjoying their right to adequate housing, including higher levels poverty, lack of access to employment, discrimination and lack of support for independent living.
On the other hand, On 19th February 2020 the gavel fell on the
58th session of the UN Commission for Social Development,
which agreed the text of the historical first United Nations resolution on homelessness. A serious violation of human dignity, homelessness has become
a global problem. It is affecting people of all ages from all walks of life, in both developed and developing countries.
Relevance of data:
Globally, 1.6 billion people worldwide live in inadequate housing conditions, with about 15 million forcefully evicted every year, according to UN-Habitat,
which has noted an alarming rise in homelessness in the last 10 years. Young people are the age group with the highest risk of becoming homeless.

The UN Commission’s resolution recognizes that people are often pushed into homelessness by a range of diverse social and economic drivers.

“It could happen to anyone. It’s not always drugs, alcohol. It’s not always something external. Life happens. And life can happen to a whole lot of us.
It did during the great financial crisis, and it could very well happen again”, said Chris Gardner, who had described his experience of homelessness in
his bestselling book, “The Pursuit of Happiness”.

“We, as a great human society, we are diminished, we lose the gift of their creativity, the gift of their curiosity, the gift of their potential when it
is marooned by all downstream consequences of homelessness”, said Mary McAleese, Former President of Ireland.

“I will never forget my first experience with homelessness. I, unfortunately, was born into a family plagued by a chain of events which included domestic
violence”, added Chris Gardner. “My one regret about being here today is that the two most important people in the world to me couldn’t be here today‐‐‐I’m
referring to my granddaughter and my goddaughter. One of them says that she wants to become the President of the United States and the other one says
that she wants to become an astronaut and go to the moon. And you know what I say to both of them every day? Let’s go!!! THAT’S THE POWER of ONE!”

In its resolution of the UN Commission for Social Development calls for a response by all sectors within Governments and societies. The Commission recommended
the resolution for adoption by the UN Economic and Social Council later this year.

The Commission also celebrated the
25th anniversary of the World Summit for Social Development
and its Copenhagen Declaration. Stakeholders and experts from all over the world expressed strong support for the work of the Commission, noting that
the outcome of the Copenhagen Summit remains relevant today and continues to guide social development in their countries.
Kenya ministry of social protection was recognized on this event.
All in all with the current trends in Kenya it remains a pipe dream for having accessible housing in place.
This is because there are no adequate measure or regulation in place to ensure real inclusion is achieved in housing agenda.
What remains is the low confused undertones among the Kenyan disability community without knowing which direction to take!

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 Deep Crises in the Kenyan disability sector Author Mugambi Paul.

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

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

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

“DISABILITY LENCE” The unspoken truth of the Kakamega school tragedy! Author Mugambi Paul

In the recent past more schools in Kenya are reporting deaths and newly disabled pupils in unclear circumstances. Yet we have lots of resources’ and commitments towards achieving sDG number 4 and meeting the Kenya 2030 vision.
Kakamega school is not the last in this zero-game played by lack of observation of accessibility standards.
Kenya has lots of different pieces of legislations which needs harmonization and have a clear state organ to lead in implementation.
In September 2019 a classroom crushed at Precious Talents Top School in Nairobi killing 8.
Up to now no one has been convicted nor a report produced.
How many more should die or get disabled?
I opine that Schools have become death traps for future leaders and different influencers.
The unspoken truth is that the lack of observation of built accessibility standards seems to be the major setback towards this issue.
How many more will die or get disabled so that policy makers will protect the innocent lives?
Schools are meant to be safe heaven away from the harsh times in Kenya.
I believe the different policy makers seem not to grasp what is ailing lots of buildings in the country.
Kenya seems to be mark timing on the root course of collapsing of buildings and stampede in build environment.
The voice of the disabled:
the disability sector in Kenya have maintained the traditional tune of wait and see who will blink first.
I observe that more persons have become disabled in search kind of disasters.
How are disabled persons included in disaster management?
How are the newly disabled persons included in the new club membership?
What are the support measures put in place to ensure the persons who have acquired disabilities have a smooth ride of inclusion?
According to different studies, it is moment like this when the disabled persons organizations and allies of the disability sector are needed to raise the voice of accessibility.
It would be prudent to see policy makers within and without the disability sector setting record stay straight on having national accessibility standards.
One of the commitments made by the Kenyan government is about inclusive education in July 2019.
Could the stakeholders in the disability sector stand up and make a statement?
Shall we continue to be left behind?
Disability media reporting:
This is one of the major gaps in the media industry.
The exact desegregated data of the newly disabled persons is not given nor reported.
Recommendation:
The national construction authority needs to conduct an accessibility audit of all schools.
This will aid the non-compliant schools to be shut down by the ministry of education.
The national construction authority has the capacity in resource mobilization and expertise in built environment.
Moreover, what they might need capacity on is technical support on conducting inclusive audits.
When will the ministry of education issue a decree on accessibility standards in school just like the way the Cabinet secretary ordered pregnant girls to be admitted in form one?
All in all, as a public policy scholar I believe disability mainstreaming will be achieved when all institutions take responsibility and not to wait for a policing unit to actualize inclusion.
When we make built environment accessible for all it benefits everyone not the disabled only.
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.

Should the disabled Kenyans stop be being in Automobile state? Author Mugambi Paul

Majority of Kenyans still see disabled persons as objects of pity. I believe with a collective paradigm shift of mindset we can do it [UNDP 2018]. With the new decade we can stand up and say no to discrimination and harassment of disabled persons. [UN enable 2019]
needless to say, as a totally blind person myself, I am all too familiar with such dehumanizing treatment. Often disabled individuals are treated differently, simply because we look, act, move or communicate differently. But should our differences, stemming from disabilities that we did not choose, be an excuse or justification for others to treat us as lesser individuals?
Unfortunately, many of us, the disabled Africans keep silent as this evil is perpetuated.
This is done by either family members, friends, employers and even in the public spaces.
In liberal democracies, citizens have the right to equal treatment under the law, which means that governments should not differentiate among people without good reason to do so. This is known as the principle of non-discrimination.
That’s because true equality requires a government to actually dismantle structures that perpetuate group disadvantage, either by providing preferential treatment or special protection to those on the wrong side of invisible barriers.
During my tenure as a student leader at Kenyatta university we pushed the policy agenda for affirmative action in university admissions for students with disabilities.
although we din’t get to enjoy the fruits of our advocacy.
Am grateful that the future generation of students with disabilities from 2010 din’t have to pay the price. there were great lessons.
Search as not everyone understand the journey for social justice.
Secondly as a leader you have to sacrifice for the people you lead.
camping at Professor Jude Ong’ong’a and professor Katana DVC academics and registrar academics respectively, was the order of the day.
This was to ensure no disabled person misses the exam card.
With this not withstanding the employers in both public and private sectors in Kenya need to borrow a leaf.
None of these preferential treatment policies are a magic solution for ending group discrimination and segregation, but without affirmative action policy the number of students with disabilities in both public and private universities would be far less than they are today.

On the other hand, In Kenya we have lots of disability awareness campaigns which have highly been of great improvement in the area of advocacy.
In other words, at list the mainstreaming media and social media in Kenya has highly contributed to the improved changes not like when we were starting fighting for disability space.
Additionally, we used to be chased like wild dogs when we approached media gates and other public spaces as we sort for services.
It seemed all along Blind persons were associated with begging thus the maltreatment.
Thanks to the UNCRPD the tide has really changed though we still have a long way to realize the dreams of our forefathers like EDDY Robert of the famous quote “Disability is a club.”
The reality check on Kenya is that we have adopted a more contemporary position on disabilities with accompanying policies and legislation, the general population remains rooted in the medical/charity model of disability.
I can site many examples of how Kenyans see the disabled as objects of pity who require sympathy, help or fixing. These interactions dehumanize and segregate PWDs. When one lives solely in a world of handouts and tokenistic gestures of goodwill promoted by corporate social responsibility initiatives, no dignity is earned, nor will any respect be gained.
For instance,
as a Blind artist and also a professional diversity and inclusion expert many a times people want to pay less for my works in comparison with non-disabled persons [Riayan 2019].
Sometimes with out blinking they demand to be offered service for free.
You really wonder if a blind artist and consultant uses free energy and free provision of his or her needs in his or her life.
Another example is the corporate who allege to organize support for assistive devices or marathons. Do these events actually sustain the disabled persons? Do the activities benefit a few individuals with disabilities and then sing Hosana?
I vividly remember how a vision impaired was almost being lynched at a Muhindi shop in town. This incident happens when he was checking the prices of bags and shoes.
The owner thought the vision impaired individual was a thief.
As long as the disabled are viewed as lesser or alien, dehumanizing incidents like the one we experienced at the media gates, will continue to be a common occurrence. Many incidences of disability-related harassment and discrimination have gone, and will continue to go, unchallenged. Despite protective legislation, sadly, little can be done to address the dignity that has been willfully trampled upon.
As a public policy scholar, this leaves me to conclude that decency and respect for a fellow human being cannot be regulated through legislation alone.
I recognize and appreciate that my views on such matters are not
widely shared by everyone in disability movement nor in our society. I acknowledge
that there are many traditions in our society which reflect different
experiences and perspectives than my own. All the same, I am proud to be
guided by a strong code of conduct that embraces diversity with respect for
divergent differences of opinion, beliefs, identities, and other
characteristics. What I stand for demonstrates that as a blind person am from a diverse cross section of society.
As a global citizen who happens to be blind, I have had the privilege of travelling to many different countries. Of the many that I have visited, Australia and Israel stood out the most. Perhaps due to their experiences and effective implementation of the disability policies.
. In my many visits, I have yet to be discriminated against. I have been treated not only with dignity but have always been offered help respectfully
when needed.

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

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

Image

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

“Open letter to the Newly NCPWD chair” Mugambi Paul


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

According to June 2019 Kenya investment report and state social enterprise reports they do not have any reference to inclusivity aspect of disabled persons.
The report just mentions the term disability only in the reference of the social protection aspect of the Uwezo program.
This literally shows Kenya still has a long way towards getting proper participation of persons with disabilities and inclusive reporting.
All in all, the disabled a person and their organizations need to enhance the collaborative accountability mechanisms which will aid towards the realization of achieving the global commitments.
The views expressed here are for the author and do not represent any agency or organization.
Mugambi Paul is a public policy, diversity, inclusion and sustainability expert.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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

As Lopita Nyong’o said “dreams are valid”

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

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

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

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

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

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

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

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