“What happens when an entire population group is absent from decision making forums?
I opine It makes it possible to forget about them. According to several scholars and academicians in public policy 2021, the people who are most affected by particular agenda should be made central when considerations are being done. This applies to both development and emergency consideration ]Sharon 2017[. that several studies have shown if this is not the norm it leads to poor decision making [Carolyn 2018, badger 2017]. COVID-19 has exposed inequalities in countries across the world, deepening the existing discrimination and marginalization experienced by persons with
disabilities. The pandemic constitutes a serious challenge in the implementation of the Convention on the Rights of Persons with Disabilities (CRPD) and
the achievement of the Sustainable Development Goals.
On the other hand, individuals not engaged in the public spaces are at best they are remembered later, and the response is retrofitted in some way to include them.
For instance, most African countries have not yet included concerns of persons with disabilities in their COVID-19 response mechanisms.
For example, no prioritization of the vaccine rolls out targeting persons with disabilities who are most vulnerable and most have preexisting conditions.
persons with disabilities are not represented in the national vaccine committees. Unfortunately, several research in 2020 showed that the majority of COVID-19 deaths were

persons with disabilities,
and persons with intellectual disabilities have been
up to six

times more likely to die than other persons.
The national Plans which have been launched absolutely kicks out this critical mass.
The response forms the disability sector seems to have been normalized despite it being a pandemic.
Why do persons with disabilities or organizations of persons with disabilities are left to beg by lobbing for what’s rightfully theirs?
When will governments in Africa acknowledged the disproportional impact of the pandemic on persons with disabilities?
It seems organizations of persons with disabilities have to double their efforts of advocacy and remind governments that persons with disabilities do exist ]UNCRPD article 2].
Additionally, there is inadequate literature and information specifically targeting persons with disabilities.
A closer look on the east African ministry of health websites tells it all.

How could this happen? How could the largest minority group in the continent, expected to be heavily impacted by the COVID-19 pandemic, be completely forgotten and left unmentioned?
This is because persons with disabilities are not in the dinner table.
I affirm this is because decisions on how to include persons with disabilities have always been inherently political.
Join me on the disability sausage YouTube channel as we dig more on public policy matters.
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”

Arrogance and hope are the meaning of wheelchair
Author Mugambi Paul
“Opinions expressed are my own”

This is the 12th year of celebrating the international wheelchair day in the globe. Unfortunately, due to COVID-19 19 there won’t be any major activities for awareness creation. day was first launched in 2008., the rank of International Wheelchair
Day remains as significant as ever as it sets a reminder and opportunity for wheelchair users to celebrate the positive impact wheelchairs have on them
lives.

The growing trend of the celebration and the acknowledgement of this day continues to receive attention in a global scale. The aim of the commemoration
reflects the effort and great achievement of millions of people who either provide accessibility to wheelchairs or for those who support and care for all
wheelchair users themselves.
Will all the wheelchair users post at list a photo on their social media handles?
Several research studies affirm that in low-income countries owning a wheelchair is a luxury for many, since most can’t afford due to high cost and when offered through charity wheelchairs are normally of low quality or even cause mor harm and additionally aid to secondary impairment, the so-called deformity.
In other words, many wheelchair users in less resourced settings receive wheelchairs without the appropriate related service. As a result, users often receive wheelchairs
that are inappropriate for their needs, ill-fitting and provided without training on how to safely and effectively use their wheelchair.
On the other hand, most wheelchairs in LMICs are donor-funded with delivery models ranging from organizations distributing refurbished wheelchairs with limited services to
mass distribution campaigns to organizations providing quality appropriate wheelchairs with services that meet WHO Guidelines.

As a public policy scholar, I observe most of the low-income countries when making references of persons with disabilities most policy makers are quick to point at persons with physical impairment and in their ablism language refer to “physical challenge” not forgetting that other persons with disabilities do exist.
In other words, the literature and practice available in government and private sectors documentations are highly not inclusive of other impairments.
Historically in the African culture when one sees a person on a wheelchair most deenently claims arise that this person might be cursed or has undergone some rituals. Could this be one of the reasons why many persons with disabilties are not visible in the community gatherings?
For example, it is a taboo to be associated with a disability. Last month during the burial of a long-term serving public personality and business man in Kenya, in his last moment they recognized the importance of the wheelchair when the individual was using during the sickness period on live TV broadcast.
For many observers and listeners this was just a mere passing concern but as a diversity and inclusion specialist I so something deeper.
Imagine if he was alive and we evidently so the usage of the wheelchair this would have contributed to the great impact of change of narrative and also encouraged many more to ensure access of built environments.

I call it attitudinal barrier to be precise.
Most importantly in Kenya the 2 top most coveted seats of the semi-autonomous government agency anchorage of disability are held by 2 wheelchair users.
Will the two sharifs in town ensure at list the NCPWD offices are at list accessible?
Will the two sharis in town ensure reduction of disjointed or defragmented procurement processes of wheelchairs In Kenya?
Will their tenure ensure disability inclusivity?
We need to see more of other impairments so us not to live any one behind.
As the clarion call in the SDGS, global commitments and vision 2030, African vision 2063 etc.

Who are wheelchair users?
Wheelchairs are one of the most commonly used assistive devices; WHO estimates that 1% of the population, approximately 75 million people globally, require
a wheelchair.3 Those needing wheelchairs are those with mobility limitations and may include people born with congenital abnormalities, people with developmental
and neurological conditions, such as cerebral palsy or muscular dystrophy, people with a spinal cord injury, people with musculoskeletal conditions such
as lower limb amputation, people living with physical impairment which can be a result of polio or non-communicable diseases (NCDs) such as diabetes or
stroke, and older people with gradual functional decline.
All in all, I believe the two sharifs in town, from their own lived experience they are aware of the societal attitudes towards wheelchair users where they are classified as arrogant individuals.
The society doesn’t realize it’s the disablement experienced and discrimination which has actually made this possible!
When a wheelchair user is dropped by a public vehicle at the wrong place without consent what does the society expect?
When teachers’ employers bully persons with disabilities what do we expect?
I recommend everyone to buy this book from a lived experience and how to cope with lie.
I have personally reviewed it before publishing.
Navigating the rocky terrain of disability is stressful, to say the least. The journey is even more stressful when you acquire disability later in life through accident or illness. It takes a toll on your psychological and social wellness and if not well navigated it can lead to depression and eventual painful slow death.

This experience-based disability handbook is a guide through that journey. The author is a quadriplegic following a gunshot injury sustained on his spine's cervical vertebrae 4. The injury, sustained in 2011 left him paralyzed from the shoulders downward.

In this handbook, he shares his experiences which he has compiled into the top 23 toughest obstacles he has encountered along his journey, and the journeys of others he has interacted with along the way. He also shares his experience-based tips on conquering the obstacles.

Through this handbook, he aims to help the disabled, especially those with newly acquired disabilities in their journeys towards healing and acceptance. He also aims to enlighten their families, friends and the general society on their plights, needs and treatment.

The handbook is a must read for not only persons with disabilities but also their families, friends and the society in general. Grab your copy today.

https://a.co/7dfgcaZ

For this and much more join me the disability sausage YouTube channel and rediscover what it means to be a wheel chair user!

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”

1. Moebius syndrome involves facial paralysis and lateral eye movement paralysis.
It’s a rare congenital neurological disorder involving facial paralysis and lateral eye movement paralysis. It's caused by underdevelopment of the sixth and seventh cranial nerves in the brainstem, which govern lateral eye gaze and facial expression, respectively. No genetic or hereditary cause for Moebius has been identified. One theory is it might be caused by a brief disruption in blood flow to the embryo during early development (Briegel, 2006). Moebius has diverse effects. Some people have additional symptoms such as limb abnormalities and crossed eyes. Although the physical symptoms of Moebius may be challenging to navigate at first, once parents and people with Moebius syndrome develop expertise, many feel the remaining challenges are social in nature (Bogart & Hemmesch, 2016).
2. The #1 request from the Moebius syndrome community for is greater public understanding.
Moebius is a very visible but unrecognizable disability, meaning that strangers may immediately notice that the person looks different, but can’t figure out why (Bogart & Tickle-Degen, 2015). They make erroneous assumptions about the cause, nature, and accommodations needed. People with Moebius syndrome hear about all sorts of “interpretations” of their appearance. Strangers ask them if they had just gotten a Novocain shot, if they were having a stroke, or if the condition was contagious, deadly, or painful (Bogart, 2015).
In focus groups of people with Moebius syndrome, the most common topic is a desire for greater public awareness to reduce misunderstandings (Bogart, 2015; Bogart et al., 2012). They know firsthand that people are confused by their facial difference. Widespread awareness would reduce the need to explain Moebius and would educate others to pay attention to the alternative ways they express themselves.

The author (center) with friends at the Moebius Syndrome Foundation Conference
3. Moebius syndrome affects communication.
People with Moebius are frequently misunderstood because facial paralysis limits expressivity (but they make up for it in body language), and it sometimes makes speech harder to understand. Because people are accustomed to receiving feedback from facial expressions, they may mistake a person with Moebius’ lack of facial expression as unfriendliness, boredom, or intellectual disability (Bogart et al., 2012).
4. People with Moebius syndrome embrace expressive diversity and you should, too.
Humans use a vast array of communication channels, including gesture, prosody (tone of voice), language, posture, proximity, style, and facial expression. My research finds that people with Moebius syndrome amp up their expression through channels other than the face, something I call alternative expression (Bogart et al., 2012). This is an effective strategy; people with facial paralysis who use a lot of alternative expression are rated more positively by strangers than those who use less (Bogart, et al., 2014). Now that we must wear masks to prevent the spread of COVID-19, people with Moebius syndrome are already skilled in communicating without facial expression; those without facial paralysis could take a cue from them about expressive diversity. Many ways of being involve expressive diversity, including disability, culture, gender, and individual differences. Being attuned to expressive diversity can make everyone more sensitive humans.
5. People with Moebius syndrome face discrimination.
People with facial differences are often avoided, stared at, feared, or bullied. Many in the Moebius community have stories about being ignored by shopkeepers or waiters, or spoken to only through a person that they are with. People with Moebius have been denied public-facing jobs or face a glass ceiling in which they are not allowed to rise to a leadership role.
6. Health care providers (including psychologists) are unfamiliar with Moebius syndrome.
The rarity of Moebius means that most providers aren’t familiar with it, leading to diagnostic delays and inadequate support. It takes people with rare diseases 7-9 years on average to receive an accurate diagnosis. Healthcare providers should understand how to recognize Moebius syndrome, and how to research what they do not know with humility.
7. Research shows that information in this post reduces bias toward people with Moebius.
I conducted an experiment testing whether awareness helps people form more positive impressions of those with Moebius syndrome (Bogart & Tickle-Degnen, 2015). Some participants were assigned to an “awareness condition,” in which they read information like that in this post], and some were assigned to a control condition in which they were not given any information about facial paralysis. Next, all participants watched brief videos of people with facial paralysis. The participants in the awareness condition rated people with facial paralysis more positively than those in the control group. Knowledge is powerful!
Share this post to promote public understanding about Moebius syndrome. Understand that someone with an unusual or unexpressive face may have facial paralysis. Understand that facial differences are not scary. Understand expressive diversity.
References
Bogart, K. R. (2015). “People are all about appearances”: A focus group of teenagers with Moebius syndrome. Journal of Health Psychology, 20, 1579-1588. doi: 10.1177/135910531351727
Bogart, K. R., & Hemmesch, A. R. (2016). Benefits of support conferences for parents of and people with Moebius syndrome. Stigma and Health, 1(2), 109.
Bogart, K. R., & Tickle-Degnen, L. (2015). Looking beyond the face: A training to improve perceivers’ impressions of people with facial paralysis. Patient Education and Counseling, 98, 251-256. doi: 10.1016/j.pec.2014.09.01
More

Lets meet on disability sausage YouTube channel and discuss this and much more
uest author Beau Bogart,