Living with low vision Advocacy Story

At a recent low vision group meeting I attended a woman came and spoke with us about self advocacy. What made her talk so interesting and unique is that
instead of providing specific tips or talking legalese she told her story. As she talked it occurred to me that we all have an advocacy story of our own
to tell. Here’s mine.

I learned how to advocate from my parents. When they were told that I would be taught Braille because I am blind my Mom and Dad insisted that it was
important for me to learn how to read print first. Because of their persistence I am able to read large print today. That was the right choice at the
time however, I will say this, if my parents had encouraged me I might have decided to try reading Braille at an earlier age.

I wish I could say that as I grew into a teenager I was less stubborn and more thoughtful regarding my needs and wants. But sometimes what we want isn’t
what we need. When I turned 13 my mobility instructor decided it was time for me to acquire my first cane. I hated it. I didn’t want my friends to see
me using it and I didn’t think my vision was bad enough to need it. Of course this meant I began advocating to the detriment of myself. My instructor realizing
this knew there was only one solution. Let me learn the hard way. So she scheduled a night lesson and told me I could decide whether or not to bring
my cane. Of course I chose not to. The lesson did not go well and my instructor was impatient and angry. But it was because of that night I was able
to grudgingly accept using that cane for travel after dark.

When I graduated from High School I really wanted to attend college and become a teacher or journalist. The state of PA had other ideas. They wanted
to fit me into their little mold which at that time meant I’d either work in a sheltered workshop or I’d be sent away to become a vending stand operator.
Those were the only options I was given. Not being satisfied and expressing my displeasure I began my own crusade to find work. Because I didn’t let
those in charge of the money tell me how they wanted me to live my life I was able to work in a variety of jobs within the disability community. Most
of these jobs involved me teaching or writing in some form or other. I was even fortunate enough to provide peer support to some individuals along the
way.

When most people hear the word advocacy they probably think about demonstrating or trying to be heard above everyone else. Self advocacy isn’t always
that way. Sometimes it’s assessing the situation you find yourself in, learning all you can about your various options, then making a decision and sticking
to it as I did regarding employment.

Now I face my greatest challenge yet. Since I have a hidden disability it is more important than ever that I self advocate. People don’t understand my
sensory over load issues and attempting to explain them is sometimes interesting. For instance when I tell someone that the fire siren or vacuum cleaner
is too loud they always want to point out that I must have more sensitive hearing because I am blind and that they understand it must be louder for me
then for them. What they don’t realize is that it isn’t the volume, tone, or pitch of the sound it is how my brain is processing it. It is the same with
my other senses. I’m learning to speak up in a new way. I have to alert people when I need to change my environment to accommodate my needs.

When I’m faced with a major life decision I do a lot of research to determine all of my options. Then make a pro and con list to help decide which option
is best. I stick to my decision. Family and friends mean well but I am the one who has to live with the results of my choices. I speak up if I need
help. I don’t assume those around me will know what my needs are.

I hope sharing my story and strategies will inspire you to advocate for something you may need or want in your life.
by Guest
Donna Williams.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Economics of disabilities; what we’re not told Kenyan story

July 24th 2018 the UK government, in partnership with Kenya and the International Disability Alliance (IDA), co-hosted the first ever high level global
disability summit in London. The aim of the meeting was to galvanise global efforts to address disability inclusion.
The summit brought together more than 700 delegates from governments, donors, private sector organisations, charities and organisations for persons with
disabilities. Mr Ukur Yattani, the Cabinet Secretary for Labour and Social Protection led the Kenyan team.

Globally, one out of every seven people live with some form of disability, the majority in low and middle-income countries. In these settings, disability
is both a cause and consequence of poverty because people with disabilities often face significant barriers that prevent them from participating fully
in society, including accessing health services and attaining education and employment.

According to the World Health Organisation, about six million Kenyans are persons with disabilities. The Kenya National Survey for Pwds, 2008, says nearly
80 per cent of these six million people live in rural areas where they experience social and economic disadvantages and denial of rights. Their lives are
made more difficult by the way society interprets and reacts to disability. In addition to these barriers, Kenya still lacks a policy that operationalises
laws on disability. The National Disability Policy has remained as a draft since 2006!

But let us look at disability from different frames. Have we thought about the significant contribution in the economy made by people with disability as
consumers, employers, assistive technology developers, mobility aid manufacturers and academics among others? According to Global Economics of Disability,
2016 report, the disability market is the next big consumer segment globally — with an estimated population of 1.3 billion. Disabled persons constitute
an emerging market the size of China and controlling $1 trillion in annual disposable income.

Do people working directly in these industries pay taxes? Does anyone have an idea of the revenue — direct or indirect— collected by government from disability
industries, organisations, import duty charges on assistive devices and other materials used by persons with disabilities? What of the multiplier effect
of the sector; transporters, warehouses, and PWDs themselves who are active spenders and who pay both direct and indirect taxes.

SH40 BILLION

Just look at it this way; six million Kenyans (going by WHO’s estimate) are persons with disabilities and its assumed about two million of them are wheelchair
users. The cheapest outdoor wheelchair fabricated locally is about Sh20,000, translating to a staggering Sh40 billion! Imagine the rest using crutches,
hearing aides, white canes, braille services and costs of hiring personal assistance. Undoubtly, this is a huge market.

The contribution of people with disabilities far outweighs what is allocated to them through affirmative/charity considerations.

President Mwai Kibaki signed The Persons with Disabilities Act, 2003, in what turned out to be the most unprecedented disability legal framework in Kenya.
The Act led to creation of a State agency called the National Council for Persons with Disability. During his second term in office (May 2008), Kenya ratified
the United Nation Convention on the Rights of Persons with Disability.

MEANINGFUL PARTICIPATION

One fact that most people have glossed over is the allocation given to the National Council for Persons with Disabilities, compared to the contribution
made by PWDs to the social, political and economic spheres in the country. But then, in Kenya, studies to ascertain the actual contribution of disability
as a sector have not been conducted.

We must change the narrative of disability for us not to leave out this vibrant community in development and other spheres of life. Disability must be
viewed not as a burden but as a part of diversity, like any other. Disability is not about someone’s impairment but rather about a barrier – environment
and attitudinal – in front of this person to freely and meaningfully participate in the society.
By a Guest writer
HARUN M. HASSAN

17 Easy Ways To Make A Blind AKA mpofu Person’s Day

1. When introducing yourself, use loud, exaggerated speech. Since we’re
blind, it’s safe to assume we’re a little dim, too.

2. Don’t speak directly to us. It’s always best to talk over our heads like
we’re not there at all, especially if you are offering a service. Example:
“What would she like to order?” Be sure to ignore our attempts to answer
for
ourselves.

3. Grab or otherwise manipulate our bodies whenever and wherever you deem
necessary. For example, if you intuitively perceive that we’re going the
wrong way (even if you haven’t asked where that is) just snatch the nearest
limb and lead on, Macduff!

4. If you aren’t in a position to grab us, you can always shout
instructions
in the hope that we’ll know what you’re talking about. If we look baffled,
just keep repeating the instructions in an increasingly frantic tone. We’ll
clue in eventually.

5. Remind us often how grateful we should be that people are willing to
provide accommodations for us. While it’s unlikely that we will ever, ever
forget this for more than five minutes at a time, it’s a good idea to slam
the thought home when we’re not expecting it. It builds character.

6. Stage loud conversations about us while we’re in the room, because we
won’t hear. If we hear, it’s okay, because we won’t understand. If we
understand, it’s okay, because we won’t care.

7. Keep all conversation firmly focused on blindness. If we try to
interject
by discussing our education or interests, just redirect us. We get carried
away trying to be all normal, so it’s helpful to keep us on track!

8. Be sure to describe all the other blind people you’ve ever met, in
extravagant detail. We couldn’t be more fascinated by that blind guy who
skied, and that other blind guy who went to school with you, and that blind
girl you met on the train once-the one with the cute puppy.

9. Make a habit of asking us why we’re “here”. If we’re on the bus, ask us
why we’re out alone. If we’re at work, ask us how we got the job. If we’re
in class, ask us why we’re in university. If we seem offended, ignore us:
deep down inside, we really enjoy presumptuous interrogation!

10. Dispense advice about how we should live our lives; the less you know
us, the more valuable your feedback will be. If you need a good starting
point, you can begin by analyzing our mobility tool of choice (cane or dog)
and emphatically demanding that we switch. We love that.

11. Involve yourself in our love lives, specifying exactly the type of
person we should date and why. If you think we should date a sighted person
because they’ll be able to take care of us, we’ll want to hear all about it.
If you think we should date a blind person because we should “stick to our
own kind” we will be all ears!

12. Give us things-money, coupons, whatever-because you pity us and want to
make our day better. Don’t be phased by any apparent expressions of
confusion. (“Oh, that’s just my gratitude face!”)

13. Stop us on the street and thank whomever we’re with for helping/taking
care of/being so kind to us. It’s not as though we have real friends who
genuinely enjoy our company. No: if we’re out with a sighted person, they
are fulfilling a purely charitable role. They will appreciate your praise,
and we will feel extra extra grateful!

14. Place your hands on us in any public place and pray. If we gently
explain that we don’t want to be prayed for, rest assured that it’s just
the
secular cynicism doing the talking. When our sight is miraculously
restored,
you’ll be the first to know.

15. Make as many potentially dangerous practical jokes as you can think of.
A few good ideas include warning us of imaginary obstacles (“Watch out for
that tree-just kidding!”), concealing our possessions, and encouraging
us to
“find” you while you run gleefully around us in circles. These were a
staple
of primary school, and I treasure many pleasant memories from that era. Do
me a favor, and bring back the nostalgia!

16. Refer to us as “that blind person” even after you know our names.
Blindness is so integral to our identities that our names are really just
decorative, so there’s no need to remember or use them. If we fail to
answer
to “Hey, blind girl/guy!” just keep trying. We’ll learn to love it.

17. Assume that our default status is “Help!” If we reassure you that we’re
okay, thanks, don’t fall for it. Insisting upon rescuing us every time we
cross paths places us into a position of dependence, which is exactly where
we belong.
Article Thanks to our guest writer:
Dan Hicks