My third eye on Kenya’s disability movement

It has been argued from different quarters that the attitude of entitlement without responsibility has contributed to apathy among persons with Disabilities.
Kenyan persons with Disabilities should be encouraged to become proactive in ensuring good governance practices and use their creativity to ensure that they find their rightful
space in policy and decision making.
Failure to do this will mean that they have accepted to continually be marginalised.
Accountability is critical in ensuring that political leaders and all duty bearers honour their commitments and shows how different programme actions and
investment of public funds translate into tangible results and long-term outcomes that directly benefit persons with Disabilities . Accountability mechanisms should allow for grievances to be voiced and remedies provided and, as a responsive function, should help to improve how policy
or service delivery can be adjusted to make it more effective.
Efforts should be made to build capacity for persons with Disabilities to claim their rights and engage as active citizens.

An effective accountability mechanism is one that has the ability to transparently show the linkages between national and county levels with strong feedback
information loops.

This accurate and timely information has the potential to help in supporting national and county recommendations, actions and approaches aimed at reaching
the goals that support persons with Disabilities meet their aspirations and live a prosperous life.

Working with persons with Disabilities , especially in complex processes like planning, budgeting and monitoring, is crucial if development policies are to be truly
relevant to those they are meant to serve.
Sometimes participation and collaboration becomes difficult when review processes are complex and hard to interpret.

Persons with Disabilities should demand leaders to provide information in alternative format that is interactive and language that they can understand. All this is enshrined in Kenyan constitution and the UNCRPD.

An environment in which feedback is shared should also be considered.

If possible it should be easy to access without necessarily incurring costs.

Political leaders can only be said to be accountable if they listen and respond to the needs of persons with Disabilities people in a clear manner, explain action taken to
rectify whatever recommendations made and a guarantee that it will not be repeated.

This can be through actions like legislative reforms, innovative planning processes and prioritised funds allocation.

In conclusion, non-discriminative feedback mechanisms and effective follow-up processes is a means of verifying that an effective accountability mechanism
is in place.
The Constitution of Kenya has already defined duties, responsibilities and rights, so what is critical is to create strong linkage and integration both
at national and county levels because decisions are made through a network of actors.
For instance in the recently held general elections the Disability community was duped by the independent electro commissionin many ways.
There were no braille ballots at all. To make matters worse 17 counties left out the nominees with disabilities and for the 30 counties that had still had anomalies. Its still gloomy for women with disabilities as history has shown us they are often left out by women with out disabilities as they champion the women agenda and more sore the 2 third gender rule.
Never the less its important to note at the high level UNCRPD forum in August 2015 Kenya nation proclaimed that they provide free legal service when the rights of persons with disabilities have been ignored plus they provided accessible ballot in 2013.
We are yet to see the steps in which the state law office takes this matter in to consideration.
The litmus test that Kenyan persons with Disabilities should use is whether political leaders have put accountability mechanisms and pathways in place that are inclusive,
accessible, collaborative and responsive clearly showing how they will be structured and work in practice.

NB The views expressed here do not represent any agency or organization they are based on 17 years experience as a disability practitioner and human rights defender.

Few Discrimination experiences at its best In Kenyan context

Every Day:

1) Store employees assuming we’re stupid:Go to the grocery
store, the movie theater, a store in the mall, a restaurant or any
public-type place that has
employees, and five times out of ten you’ll run into an employee who
will automatically assume you’re ill-equipped mentally because of an
obvious visual
disability.

2) buses and matatus passing us by:If you live in a big outscuts like
Umoja, Rwai, Gidhurai, eastlands chances are you’ve experienced buses and matatus
passing you by quite often. People with disabilities
constantly complain that buses pass them by when they’re out on the
road trying to hail a cab.
3) Stairs in public spaces.You go to grab a coffee or meet a friend
for lunch, visit some office but wait – you can’t get in. This is architecture
discrimination at its
finest and we encounter it every day. Despite the misguided notion
that certain buildings are grandfathered-in to the persons with
disability act and do not need to be accessible,
umm no, they do. Any public space must. crossing most roads for us is a night mare.

4) Doctors not really listening.Out of all the people we encounter
each day who may possibly discriminate against us, you’d think medical
personnel would
not be on the list, however doctors and nurses can be some of the most
discriminatory people when it comes to how they treat people with
disabilities.
some one asked my tribe mate when she was pregnant “which animal did
this to you” you can imagine how it sounds when spoken in swahili! 5)
Wheelchair “quotas.”“Sorry, no more wheelchairs allowed.” Concert
venues, airplanes, city buses, amusement park rides – quotas on how
many wheelchairs
are allowed in certain places are a reality of disabled life. They’re
instated for safety, but they’re also highly limiting, generally only
allowing a
half dozen people with disabilities or so into an event or two people
who use wheelchairs on a city bus.

6) Strangers pretending they don’t see us.Once in awhile you’ll run
into someone who’s not very pleasant. Maybe they’re budding in line in
front of you,
or avoiding your gaze when you’re looking for someone to help you grab
something from the shelf. These folks like to pretend they don’t see
us, thinking
it’s easier to do that than just interact with us.

7) People taking our parking spots.It happens all the time –
able-bodied individuals parking in disability parking spaces. The
convenience is just too
hard to deny. And while this is all fine and dandy when it’s in the
middle of the night and there’s no one else at the store, they
generally take our spots
in the daytime, especially the good ones that have extra room for our
ramps. some government offices have turned the unisex accessible
toilets to be stores.

Don’t Believe the Media’s Lies: Disability and Beauty Are Not Mutually Exclusive By medicarepublic.com Additions by Mugambi Paul

This isn’t a feel good story. It’s not an essay on the virtues of strength and bravery, neither is it an attempt to inspire you with tales of overcoming
adversity. It’s not a lesson on looking past disability and discovering some inner beauty bullshit. This is a call to action. This is about acceptance
and inclusion, about seeing and celebrating. Like all diversity, disability can be beautiful.

Diversity is a hot topic. It means recognizing our differences, seeing what distinguishes us from the majority and then throwing a party hat on it and
embracing it. In recent decades, Western society has made great strides in challenging stereotypes and acknowledging diversity in skin color, size, age,
race, sexual orientation and gender. We’re still far from equality on any of these issues but the conversations exist and progress continues. We see these
identities depicted in media and when we don’t, or when we see false, corrupted versions of them, we are justifiably outraged because we understand that
representation matters.

What we observe in television, film and advertising is critical to our understanding of all aspects of society. Media has a direct and profound impact
on how we think about ourselves and others. The inclusion of disability into our socially acceptable model of diversity is an area where we still have
a lot of work to do. Across multiple media, disability is underrepresented, misrepresented, or just plain ignored. In fact, where disability is concerned,
mass media is telling us a big, ugly lie.
#In Kenya we are not yet in existence in the great media and entertainment scenes. Most artists with disability are used us charity objects. Our music royalties are not paid on time and we lack actual marketing and promotion.
I wasn’t born with a disability. But as an adult, I find myself needing to create a new identity that includes it. My search for positive examples to inspire
this acceptance of a new way of being has as much to do with how I feel about myself as it pertains to how others perceive me. In the absence of representation,
the message can only be that disability cannot be beautiful and I refuse to accept that. Fashion and beauty are where we look to see the heightened, idealized
versions of ourselves that help shape our style which is so critical to identity. Yes, fashion is fantasy but in a world where none of us are perfect,
we should all be able to find something recognizable, something that reminds us we belong.

I’m looking for the people who look like me, who look better than me. I need more than just Iris Apfel or vintage Madonna to show me how to style a cane.
I need to see the cool girl with the walker so that I can think, wow. She looks hot. I can look hot too. I’m just as vain and superficial as everyone else.
This frivolous, materialistic, self-obsession is part of my North American birthright and I want in.
In Kenya at most we don’t have artist to look upto just the short stature of Likobe and Mwala we can talk about other disabled artists are either not in existence or never granted the opportunity.
So, just where are these pretty people? In movies and TV, disability is almost always used as a plot point and not as something a real person happens to
live with. In the world of entertainment, disabilities are turned into stereotypes of victims and burdens, heroes or freaks; lazy tropes that are used
to make us feel specific emotions. These careless characterizations are not just hurtful, they’re dangerous. They inform how we see disabled people in
real life and lead us to believe they are low status individuals who cannot be happy, lead productive lives or be self-sufficient. This sucks. It’s also
wrong.

The Victim stereotype is meant to elicit pity with stories about the plight of the disabled that reinforce the idea of how awful their lives must be. Dickens
did it with Tiny Tim in such an overt characterization that even the boy’s name evokes pity. Victims can also be packaged as burdens whose lives aren’t
worth very much. Or at least not as much as that of the burdened person. By contrast Heroes elevate the status of disabled persons, putting them on pedestals
for simply living their lives. Their accomplishments tell us that if disabled persons just try hard enough, they can triumph, overcome their obstacles
and live ‘normal’ lives.
In advert we are not involved even in courses which we can advocate for ourselves the ableism mentality is spearheaded by even those we think are with us in this agenda. Cmpanies in Kenya have now followed soot on this non empowering agenda.
Daytime talk shows and reality TV have become modern day freak shows. Disability is the spectacle and as it turns out, we haven’t evolved since the days
of PT Barnum’s biological oddities. Meanwhile, physical deformities are used to portray super villains driven to crime or revenge through their unfortunate
fates. From Captain Hook to Darth Vader, movies have us socializing children to fear and associate negatively with disability. From a young age we can
be convinced that disability is a punishment for being evil, or that disabled people probably want to kill you.

All of this is, of course, crap. These are not my people. Like most disabled persons, I don’t see myself reflected in any of these stories. While I would
love to blame my chronic bitchiness on Multiple Sclerosis, people tell me I was bitchy well in advance of my diagnosis. And while it’s true that some children
are afraid of me, doctors tell me ‘super villain’ is not actually a symptom of MS.
These stereotypes are not how the majority of the disabled population experience disability or life in general. But these ideas are so pervasive and powerful
that they’ve become normalized. We believe these harmful lies without questioning them.

Part of the problem is that disabled people have little or no influence on how stories are told. It’s a population that is under-employed in every sector
and media is no exception. Stories are most often not written by disabled persons and the number of actors in leading roles with disabilities is not a
number that exists. Even when the story is about being disabled. Imagine if this were still true for other marginalized groups. Our false convictions are
so strong and so deep that most of us don’t even see a problem with this.

In addition to what we think disability is, we are left with what we think disability is not. The media wants us to believe that persons with disabilities
cannot be considered attractive, desirable or sexual.

In the fashion and beauty realm, there is no narrative. Disability is altogether ignored, as if it doesn’t exist; as if we don’t also have budgets for
things like lipstick and lingerie. We are lead to believe that disabled people are not also girlfriends, boyfriends, lovers, parents and partners, workers,
travelers and friends. We don’t recognize disabled persons as contributing, participating members of society.

It’s thus become accepted that disability disqualifies you from being beautiful. When someone does describe a woman with a disability as attractive, it
can feel like a loaded statement. Maybe it’s being said with shock and surprise. Or perhaps it’s qualified with something like “You’re pretty, for a disabled
chick” or “What a waste of such a pretty girl to be in a wheelchair”. The people saying these things actually think they’re doling out compliments. When
I was in the process of being diagnosed, someone who thought she was being supportive said to me, “Don’t worry. Pretty people don’t get MS.”

WTF? Wherever did we get that idea?

Society would have us believe this demographic doesn’t matter anyway because it doesn’t affect that many people. But according to the 2009 US census, 9.9%
of working aged Americans had a disability. That means 1 in every 10 Americans aged 18-64 reported significant difficulty with hearing, vision, cognition,
ambulation, self-care or independent living. Yet we don’t tend to think of this population as visible minorities worthy of accurate and careful representation.

If we don’t truly see the diversity, we don’t see the injustice. In race or gender this translates to things like discrimination and income inequality.
In disability this can mean lack of accessibility, or issues of employability. Transgender bathroom rights are in the news every day recently but despite
the ADA (American’s with Disabilities Act) having been around since 1990, PWD act of Kenya 2003 of NO. 14 there are many public spaces in both North America and more worse in Kenya that don’t have accessible bathrooms
at all. While we are arguing and passing laws about who gets to pee where, there is a whole segment of the population that has nowhere to pee. Why aren’t
we outraged about that?
In Kenya we get free county toilets which at most a time are not even accessible.
It’s time to get real about the stories we tell about disability. Why is it that we’re more comfortable seeing the undead eat brains than we are hearing
about an actual human with a colostomy bag? Disability is a normal part of the natural diversity of the world. It’s not going anywhere and we need to make
room for it. Increasingly positive media examples have lead to the rising status of several diverse groups over recent years. The acceptance of disability
should be no different. Media not only influences societal trends, it practically dictates them. The arts are by nature forward thinking and innovative
and have a real opportunity to change ideas in a massive and meaningful way. People with disabilities live full lives and are many things, including beautiful.
It’s time to tell these stories.

Quadriplegic explore article by Wacianya with Additions from Mugambi Paul #CDS

HARSH INSPIRATION

Of course everybody is not going to love you,
With or without your disability,
Not everybody is going to like you,
Appreciate you,
Understand you,
Accommodate you,
Encourage you,
others may hold your assistive device,
others will talk much about you,
It’s your journey, come on!
Others may accompany you,
stare at glance,
Or choose not to,
Does it mean you terminate your journey?
You see even if you choose to terminate it,
Others will continue with theirs,
The hands of time will not stop,
Neither will they slow down,
It’s a jungle out there for everyone,
So don’t just sit in your pity potty,
Angry at life and fate,
Angry at everyone and everything,
Angry at your family, friends, strangers,
Goats, dogs, wind, rain, leadership, poor infrastructure sunshine….
Angry at you, come on!
It’s a race against time,
In pursuit of joy,
In pursuit of love and happiness,
In pursuit of fulfillment,
So rise up from your pity potty,
Go out there and live,
That’s the only life you have,
Love it,
Love yourself and love others,
None of us are getting out of here alive,
so please stop treating yourself like an after thought.
Eat the delicious food.
Walk in the sunshine.
Jump in
the ocean.
Say the truth that you’re carrying in your heart like hidden treasure.
Be silly.
Be kind.
Be weird. There’s no time for anything else.

Na uache ujinga,
Kumbaff!
#b the change
arise and shine
be out of the box.

Why Disability Representation In Kenyan Politics Matters More Than Ever

In the upcoming election 2017 in Kenya year,
how do we decide who to vote for? What issues are most important to us? I believe most of us seek a candidate
and a party that represents us. We want to see ourselves reflected not just in the candidates, but the ordinary people who support and represent them at
deligations, rallies, and commentaries. Yet for many people with disabilities, seeing someone on TV or at a political rally who looks like us, whose life
is like ours, is an unusual event. We have rarely been given a voice in national politics. Until now.

When I was a little boy, I had about a Blind man DR chomba who was trying to seek election post and was denied.
in history I have read a biography of Franklin Delano Roosevelt. I learned he had polio and that he was the first and thus far only
President with a significant physical
Disability in the world.

I also learned he felt he had to hide the extent of his disability, using braces and carefully staged photo opportunities to conceal the fact that he
couldn’t walk. He refused to be photographed in a wheelchair, to the point where very few photos of him using one survive. Although I understand his decision
in the context of the times, it doesn’t exactly make me feel pride as a person with a disability. He was one of the strongest leaders in U.S. history,
yet feared being perceived as weak because of stereotypes about disability.
I also Remember very well at the university those days of ours we celebrated the passage of the persons with disability’s act 2003 not because it was enacted but because retired president Kibaki had to be on a wheelchair for the nation to realize that we exist.
It had taken 10 years to happen even if some top government officials had children with disabilities who they hide.
Some years later, not long after the Kenyan With Disabilities Act became law, I visited ministry of education Jogoo house and found lifts.C. I remember marveling that the bathrooms in
the jogoow house building were wheelchair accessible, since that was unusual at the time. I asked one of our staff about it, and she said it was
because of
a staff with a physical disability
I had never heard of her before, but I felt immediate solidarity and pride. If she
could be a ministry official with a disability, I could accomplish anything I chose.
This was the time when we actively fought for the affirmative action on entyry to the university for the young generation who are wnjoying the fruits of our labor.
Many years after that, I have watched Representative
Mwaura
giving a speech on TV, proudly advancing the Albinism agenda.
the NCPWD Chair David sankok Politically championing issues
he usually strides across the stage on. There words are powerful, and there personality are dynamic. They inspire the public in that moment. They make many believe someone in our government might actually understand our lives and care about us. They all seem like someone who might
one day be President and do so while embracing there disability without shame.
Since then, politics have taken a turn for the nasty. We have a major party’s candidates talking about ableism tendacies “who can not see the development, who can not hear the development, holding forums in inaccessible stadia, mocking of persons with disabilities”
Persons with disabilities were being carried up the stairs.
All this are not acceptable in this era.
Most of the uttered statement in mother tongue do not get in to the media and leave the disability community talking about it.
am yet to see Jubilee party, CORD collition and other smaller parties having a person with disability from the tribe address the deligate conferences qualitatively. but it seemed no one else cared.

It seems we are known on paper.
Mwaura, David, Mutemi speech have been hard within us its high time they became viral and which can lead to interviews, appearances, and most importantly conversations about disability. We need to keep having those
conversations. It’s easy for politicians to throw a big party for themselves and say all the things they believe, but how often do they actually accomplish
what they promise to do? I appreciate the fact that the all mainstream TV now a days have the sign language interprators. If KSL on TV is quality that’s a story for another day.

people with disabilities have more opportunities than they did in the past. we have more opportunities than we had. But we also still have a long way
to go since we should stop enjoying good will and go for the real deals by stopping the politicians from using us as bargaining tools.
Supporting people with disabilities is about more than including us in deligate conferences speeches. It’s about passing important laws like the
Persons with Disability bill 2016 which am not sure if it will see parliament this year, having adoption of the marakesh treaty, having a carers legislation, KSL regulation, Sighted guide regulations, Adaptive technology legislation
Having a inclusive social protection security for all persons with disabilities

It’s about fighting for jobs for people with disabilities;
our unemployment rate
is far worse than other groups we talk about more. It’s about reforming “work incentives” that are supposed to help people with disabilities to work and
still receive essential health benefits like Medicare and in-home care, but actually make being employed overly complicated.
It’s about adding more teeth to the
disability act 2003 WDA
and pursuing change in cities behind the times and still have many businesses with basic access barriers like a single step at an entrance.

It’s about creating more affordable housing and accessible apartments and homes, so people with disabilities can find a place to live and older adults
can remain in their homes as they age.

It’s about investing in technologies of the future, such as self-driving cars, robotic limbs, and fully-featured powered wheelchairs, and ensuring they
are affordable to people with disabilities.
It’s about reforming our justice system, where people with developmental and mental health disabilities are disproportionately harmed, and promoting education,
treatment, and rehabilitation for nonviolent offenders.
It’s about recognizing that the disability rights struggle intersects with the struggles of other groups. Many people with disabilities, includingme ,
also belong to minority racial or ethnic groups..
When
we have conversations and learn to understand each other, we’ll find out how much we have in common and realize we shouldn’t let people try to divide us.
As voters, we have to decide which party and candidate we feel will best accomplish these goals. For me, ,persons with disabilities should not be put in to one basket.————
If the current 12 parliamentarians and the 72 Members of county assemblys have delivered to us or not that’s a story for another day.
With that said, I acknowledge that many important disability rights laws, including the Kenyans With Disabilities Act2003, were bipartisan efforts. I will
always be willing to have a dialogue with any respectful person, regardless of party affiliation. We can only accomplish change for people with disabilities
if we work together.

Follow this voyage
@mpofunamba1
#chief disability soldier
www.mugambipaul.com
#N.b the views here do not represent any organization but are personal.

Nairobi Memoirs Part 8

#a mile in my shoes
25th March 2004
Two of my clan mates “Blind” had gone to shop for shoes at an exhibition in town.
The Indian trader refused to attend to them. He began to punch blows left right and centre that they forgot the entrance. An ensuing running battle began in the exhibition. It was the mercy of other clients who saved my brothers from being sent to the creator.
The trader thought being blind equates one to being a beggar not knowing that we can also be clients. This happened when they were new to Nairobi and being “freshers” they were quite traumatized by the experience.
If the trader and the customers sympathized or empathized that’s a story for another day.
Nairobi memoires
Copyright 2015

Nairobi Memoirs Part 7

As I walked downtown on Latema road where the Transline vehicles are located.
I heard a soft spoken charming voice say “Mlete huyo ni customer wangu!”
My guide and I were on the move. With no hesitation my guide was caught unaware from the shouting and tap on his shoulders.

“Unapeleka wapi customer wangu?” “Wow! Hujui namjua? ata alikuwa kwa gazeti”

Nairobi you are teaching me a lot. You are making me miss the desert! There is no attention there. I responded politely “I am not travelling to Kericho today”
I am wondering….

If she empathized or sympathized with me, that’s a story for another day.
Nairobi memoires
#copyright 2015

Nairobi Memoirs Part 6

As I entered the lift today, a beautiful lady asked me?
“Are you going to the 6th floor?”
I responded “Yes” not knowing she will follow me as Gloria Muliro sings.
After reaching my floor, I decided to visit “The John” and to my surprise she almost entered!”
“Where have I seen you?” She asked.
“Wow, Wow! You are the activist of the year, I saw you in the newspaper last week!”
If she sympathized or empathized with me
That’s a story for another day
#Nairobi Memoires
Copyright 2015

Nairobi Memoirs Part 5

no

As I walked downtown past the ICEA building we were chatting with my friends on how we could contribute towards the reduction of poverty (A story for another day). An elegant and smartly dressed lady was in front of us. Fortunately or unfortunately I happened to step on her! (You know what happens on Fridays’ in Nairobi)

She quickly began to throw tantrums at us!
Once I had not unfolded the “Fimboyangu!,” I decided to tell her am sorry three times. The gentleman in me repeated again and again!.
She adamantly shouted “Why have you stepped on me?”
As the crowd began gathering around us
I told her politely
“Madam you decided not to see like me?”
She was surprised her heart almost jumped out of her chest!
She began to almost hug me and give me a lot of sorries.

If she sympathized or empathized with me it’s a story for another day!
Nairobi memoires
Copyright 2015

Nairobi Memoirs Part 4

A Deaf client had visited me. I know what comes to mind.
How can a blind man and a Deaf person communicate?
since most channels of communication we have been taught have locked us out of communication.
By now my reader of this post you are wondering
“OOOH my Goodness? what happens?”
I live you to ponder on that!
If you sympathize or empathize that’s a story for another day.
#ask me tomorrow
Nairobi memoires
Copyright 2015