How to stop “Discrimination” in the Corona era! a call by Public policy scholars.

Addressing discrimination and inequality in the global response to COVID-19

In the short time since the start of this new decade, life has changed dramatically across the world. COVID-19 has now spread to more than 185 countries. The number of recorded cases has surpassed 3.5 million. Families and friends across the globe are mourning the loss of more than 240,000 people. With the stated intention of controlling the spread of the virus and protecting lives, States are implementing unprecedented restrictions on movement both within and between countries (“lockdowns”), with significant and wide-ranging impacts on societies and economies.  

As these measures have taken effect, it has become clear that, while the virus is indiscriminate, the impacts of state responses are not. In late April, launching a new report, United Nations Secretary General António Guterres stated that the pandemic is a public health emergency “that is fast becoming a human rights crisis”. As that UN report highlights, there is clear and growing evidence that state responses in delivery of healthcare, in the implementation of lockdown measures and in policies designed to mitigate economic impacts are having disproportionate and discriminatory impacts. These effects are being experienced by all groups exposed to discrimination, including, but not limited to, older persons, children, persons with disabilities, women, ethnic and religious minorities and indigenous peoples, persons, persons living with HIV and AIDS, and migrants, refugees and stateless persons. They are impacting upon the enjoyment of rights ranging from freedom of movement to access to education and from access to information to an adequate standard of living, together, of course, with the rights to life and to health. 

These discriminatory impacts are occurring despite the fact that almost every State in the world has accepted international legal obligations to ensure the equal enjoyment of human rights, without discrimination. At a bare minimum, these obligations require that the State – whether through law, policy or practice – does not discriminate in its actions. They also create a duty to provide effective protection from all forms of discrimination by private actors and to make reasonable accommodation when required. These obligations apply to all: citizen and non-citizen, irrespective of their identity, status or beliefs. They are “immediate and cross-cutting”. They apply in respect of all civil, political, economic, social and cultural rights. Crucially, while international law recognises that in states of emergency, States can limit the enjoyment of certain human rights, their obligations to ensure nondiscrimination remain – emergency measures must not discriminate either in their purpose or their effects.

As this unprecedented global crisis unfolds, it is clear that States are failing to meet their nondiscrimination obligations. Their responses – largely driven by a stated intention to protect lives – are having a wide range of discriminatory impacts. While many of these effects may be unintended, the lack of intent does not limit States’ obligations. Moreover, with new evidence emerging each week, it is clear that we cannot yet foresee the full range of discriminatory impacts which this crisis will engender. 

State obligations to assess and address equality impacts

We call on all States to incorporate equality impact assessment as an integral element of their ongoing public health, economic and social policy responses to the crisis. It is only through assessing the equality impacts of their policy responses that States can ensure that their actions comply with their binding non-discrimination obligations under international law. Equality impact assessment is the only way that States can anticipate and eliminate the discriminatory effects of their policy responses, including those which are unintended or unforeseen.

Equality impact assessments must be aimed at identifying and eliminating the actual or potential discriminatory effects of State policies. They should also ensure that policies and programmes respond to and accommodate the different needs of diverse groups with due consideration to intersectionality and that they do not create or exacerbate inequality. 

In order to ensure that States comply with their international legal obligations, equality impact assessments should be pre-emptive, coming before new policy measures are adopted and before any changes are made to policies which are already in force. Where measures have already been adopted, equality impact assessment should be undertaken as an urgent priority. Where discriminatory impacts are identified, measures to eliminate any discrimination or inequality of impact should be taken with immediate effect. States must ensure that they involve and consult all groups at risk of discrimination and experiencing inequality in conducting equality impact assessment. States must ensure that equality impact assessment is an essential element of their monitoring and review of policy responses to the pandemic and of their on the ground effects. Both initial assessments and ongoing monitoring must be informed by the collection of data on the experiences and outcomes of groups exposed to discrimination

All policy responses to the crisis must be subject to assessment, including those relating to the management of healthcare and other resources, the restriction of civil liberties, closure of businesses and educational establishments, adaptation of support services, economic and social protection programmes, immigration and border control and the use of new information technologies. The actual or potential equality impacts of actions by both state and private actors must be assessed.  

A renewed commitment to the creation of an equal world

Furthermore, we call on all States to emerge from the current crisis with a renewed commitment to the elimination of all forms of discrimination and the creation of a world in which all are “free and equal in dignity and rights”. The wide range of unintended discriminatory consequences of state responses to the crisis – ranging from the increased exposure to the virus amongst ethnic minority populations to the rise in domestic violence – only serve to underline the deep inequalities within our societies and the failure to address the systemic discrimination which feeds them. 

This crisis has shone a harsh and unforgiving light on these existing inequalities. We must emerge from it ready to forge a world in which all can participate equally. Arundhati Roy has described this pandemic as a portal, “a gateway between one world and the next”. We call on States to ensure that we walk through this portal leaving no one behind, and with a shared determination to create an equal world.

Hope beyond COVID-19 Author Mugambi Paul

Africans with disabilities are largely left out of the African governments. coronavirus response despite being uniquely affected by the disease, as discussed by the international disability alliance, several disability experts and Views expressed in different social media platforms.

 

Palpably, The COVID-19 pandemic has disrupted many aspects of our daily lives, but its impacts are especially acute for disabled persons, who may

struggle with challenges like finding reliable and safe in-home care or physically adapting to enhanced hand-washing guidance.

But the coronavirus outbreak has also created opportunities for more equitable inclusion after the pandemic ends.

How might the pandemic disturb those who have disabilities?

For disabled persons, all the general challenges that come with the pandemic certainly apply, but there are additional barriers. The first is communication—getting

information can be more difficult for people with vision, hearing, and even cognitive disabilities, as popular news sources may not be accessible, especially

when information is changing quickly. I’m Blind and can attest to that. Keeping all of us informed is key to the COVID-19 public health response,

but information is not always accessible to the disability community, for instance data visual charts are not understood.

The second barrier involves adopting recommended public health strategies, such as social distancing and washing hands. For example, frequent hand-washing

is not always feasible for people with certain types of physical disabilities. As a public scholar I know the value of these strategies, but public health

policies often do not consider people with disabilities, leaving a gap in guidance. Those who have personal aides like sighted guides for Deaf blind and Blind individuals, and caregivers also need to be considered,

as they cannot participate in social distancing in the same way that others are.

The third, equitable access to health care, is a long-standing barrier worsened by COVID-19. This ranges from getting a coronavirus test to being seen

in an emergency room. For instance, drive-up testing may be impossible if you rely on state mobility services. There are also existing barriers in health

care settings that are exacerbated as the industry aims to meet the surge of COVID-19 cases. For example, the use of personal protective equipment, including

masks, can make communication more difficult for patients with hearing loss.

Additionally, the allocation of medical resources is a concern. There’s fear that medical resource allocation, including ventilators, may be discriminatory

against patients with disabilities. In Europe and united states of America some organization of persons with disabilities and human rights bodies have filed complains about these rationing policies. This issue echoes an underlying misconception

that people with disabilities can’t have a high quality of life and therefore the lives of disabled people may not be prioritized.

What lessons can African government learn from inclusion in Corona response for disabled persons?

in some countries, there has been a shift toward telehealth for nonurgent medical visits. That has provided challenges but also future

opportunities for the disability sector. We must ensure that telehealth visits are accessible to patients with vision or hearing loss or other disabilities

in order to maintain equity in health care delivery. If accessibility is prioritized as we make this change, a transition to telehealth could open the

door to a more accessible health care system.

Several studies have underpinned, THE ISSUES OF PRE-PANDEMIC CARE DELIVERY ONLY BECOME MORE URGENT IN A TIME OF CRISIS BECAUSE PEOPLE WITH DISABILITIES HAVE OFTEN NOT BEEN CONSIDERED IN

A DISASTER OR PANDEMIC PLANNING.

While there’s a lot of pressure and certainly a high demand to meet the COVID-19 surge, it is still crucial to make sure that the organizations of persons with disabilities and disability experts

is being considered. It’s truly a remarkable and challenging moment for African health system, but the needs of the disability community can’t fall through

the cracks. The issues of pre-pandemic care delivery only become more urgent in a time of crisis because people with disabilities have often not been considered

in a disaster or pandemic planning. We need to learn from this crisis and ensure disability is part of future pandemic planning.

For those in the disability community who require in-home care or essential services when away from home, what steps can be taken to minimize the risk

of spreading the coronavirus while still receiving necessary care and assistance?

People who use in-home support care need to make sure that they have contingency plans for their care needs in case a caregiver becomes ill. Caregivers and community

organizations should also consider changing their staffing to the best of their ability in order to minimize spread. For instance, instead of three rotating

caregivers being assigned to an individual, assign one for a longer period of time. For people with a primary caregiver in the home, more flexibility in

paid time off or sick leave can minimize exposure while also meeting the care needs of the individual. What’s really important is to engage the individual

and the disability community at the policy level.

Furthermore, MANY disabled persons ARE AT HIGH RISK OF COVID-19, BUT THEIR PERSPECTIVE IS NOT BEING INCLUDED IN THE EFFORTS TO ADDRESS INEQUITIES IN THE RESPONSE.

For instance, most Kenyan policy directives are not disability inclusive.

 

In a moment when many providers have had to alter their operations due to the pandemic, what are ways to advocate for essential services and treatment

for the disability community?

The best approach is to ensure that whenever we’re talking about inequity or differences in the COVID-19 response, disability is part of the discussion.

Many people with disabilities are at high risk of COVID-19, but their perspective is not being included in the efforts to address inequities in the response.

This includes understanding the unique challenges of this community during this crisis.

We also need disability data. There is currently no systematic reporting of COVID-19 testing, infection, mortality, or outcomes by disability status.

This is evident by the daily media updates from different countries.

For example, in east Africa important differences in this data by age, geographic location, underlying health condition, estate location and race have emerged. These data have been

critical for allocating resources and directing policies, as well as highlighting underlying disparities and elevating discussions around these health

gaps. But for people with disabilities, an often-ignored health disparity population, we don’t even get counted. And this is not just the case for COVID-19.

Disability data is infrequently collected in this type of public health and medical surveillance, which limits opportunities to address disability inequities.

As a public policy scholar and expert on diversity and inclusion I affirm and recommend the data being reported should be 15 % or more are persons with disabilities “WHO 2011”

As the COVID-19 pandemic continues, what impact and legacy do you think it will have for those living with disabilities?

I’m an optimistic person, and though it can be hard to think positively right now, there is an opportunity to change how we include people with disabilities

in this moment. COVID-19 has elevated that conversation, and the legacy should be a continued focus on disability disparities and constant efforts to address

disability inequities.

As we all make substantial changes in our daily lives, such as working from home and adjusting how we connect to others, look to people with disabilities

for guidance, as we have always used alternative strategies. We are the vanguards of resilience. My hope is that COVID-19 will bring more understanding,

inclusion, and opportunity to the African disability community.

 

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”

 

Mental health and wellbeing during the Coronavirus COVID-19 outbreak Author Paul Mugambi

 

The outbreak of the coronavirus COVID-19 has impacted people in varying ways on global scale. It is understandable that during times like this,

people may be feeling afraid, worried, anxious and overwhelmed by the constantly changing alerts and media coverage regarding the spread of the virus.

Disabled persons have lived experience on this and with the additional Corona concerns its even worse.

While it is important to stay informed, the following are some mental health and wellbeing tips and strategies to continue looking after ourselves and

each other during these difficult times.

The tips are based on  experiences and great lessons as a  global citizen. 

Manage your exposure to media coverage as this can increase feelings of fear and anxiety. Be mindful of sources of information and ensure you are accessing

good quality and accurate information. Follow a “calm yet cautious” approach – do you best to remain calm and be mindful not to contribute to the widespread panic that can hinder efforts to

positively manage the outbreak. Ensure you are following directives issued by the government and WHO  medical advice and observe good hygiene habits.

 

Show compassion and kindness to one another – these times of fear, isolation (both physical and social) and uncertainty are when it is most important that

we strengthen our sense of community by connecting with and supporting each other. Remind ourselves that we can manage this much better together in solidarity,

and that COVID-19 doesn’t discriminate – it can affect anyone regardless of age, gender, disability, nationality, or ethnicity.

 

Actively manage your wellbeing by maintaining routines where possible, connect with family and friends (even if not in person), staying physically active,

eating nutritious foods and seeking additional support by contacting government or further professional support as required.  

 

Strategies to cope with social distancing, self-isolation or quarantine

 

Going into a period of social distancing, self-isolation or quarantine may feel daunting or overwhelming, and can contribute to feelings of helplessness

and fear. In addition to the above, I  encourage the following.

 

list of 7 items

  • Perspective – try to see this time as unique and different, not necessarily bad, even if it something you didn’t necessarily choose
  • Connection – think of creative ways to stay connected with others, including social media, email and phone
  • Be generous to others – giving to others in times of need not only helps the recipient, it enhances your wellbeing too. Is there a way to help others?

around you?

Thanks to those who have supported in kind the cases I presented to them.

  • Stay connected with your values. Don’t let fear or anxiety drive your interactions with others. I am also in this together!
  • Daily routine – create a routine that prioritises things you enjoy and even things you have been meaning to do but haven’t had enough time. Read that

book, watch that show, take up that new hobby.

  • Try to see this as a new and unusual period that might even have some benefits.
  • Limit your exposure to news and media. Perhaps choose specific times of day when you will get updates, and ensure they are from reputable and reliable

sources.

In my case I don’t own a TV.

Staying connected through the COVID-19 crisis

 

Research after the sierra Leone Ebola shows evidence of the significance of connection through epidemics.  It found that residents

in Sierra Leone experienced increased social connectedness, which offset the negative mental health impacts of the pandemic.

 

As connection is so important during this time, here are some tips on staying connected to others during this time. Remember – we are all in this together.

 

list of 2 items

  •  If there is someone you think may struggle through social isolation, it is important to reach out to them and let them know you care:

list of 4 items nesting level 1

◦ Call them to check on their welfare

◦ Send an email

◦ Leave a note under their door

◦ Don’t underestimate the power you have to offer hope to another person.

I have evidently seen work miracle around my self-Isolation tunnel.

list end nesting level 1

  • I encourage people to get creative with how they interact, here are some ways to stay connected if self-isolating:

I have greatly borrowed from the recent interaction in the social media.

list of 4 items nesting level 1

◦ Set up a gratitude tree – where every member posts a message or sends a text to other members to share something, they are grateful for.

◦ Find a buddy, or group of, to set daily challenges with. These could include a healthy habit, a mindful practice, a creative pursuit. Be sure to encourage

and check in daily to stay motivated.

 

◦ Set dates and times to watch the same TV shows/movies with someone and message each other your thoughts along the way… kind of like Goggle Box but you’re

not sharing the couch!

Ask random questions in the social media to make guys think!

◦ If your local community has one, join its social media group! This will keep you up to date with what’s going on directly around you. It may also include

ways you can perhaps reach out and connect with someone less fortunate than you and ways to assist them.

list end nesting level 1

list end

 

Helping children cope through COVID-19

 

This is an uncertain time for everyone, and children may be impacted by fear and anxiety. Here are some tips on how to ensure your children are supported;

 

list of 4 items

  • Give your children extra attention and reassurance. Where possible, minimise their exposure to media and social media that may heighten anxiety
  • Acknowledge your own feelings about the situation and let children know it’s okay to share their own feelings
  • Include your children in plans and activities around the house
  • If you don’t see an improvement in 4 weeks, or if you’re concerned, seek professional help (earlier if needed)

list end

 

Reputable sources of information

 

  • World Health Organisation –

http://www.who.int

Where to go for support?

 

 

It is extremely important to seek out help if you feel you need it. I want to remind everyone that counselling services are readily available.

 

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.

2018  Chief minister award winner

“making inclusion happen”

 

are disabled Kenyans In contradiction of the war Corona 2019? “what should Kenyan public health practitioner’s consider? Guest author Farida Asindua, _____

The coronavirus disease 2019 (COVID-19) pandemic continues to cause a trail of destruction globally. In the full wake of the pandemic in Kenya, a disproportionate effect is most likely to be among the vulnerable groups, such as the 918,270 people living with disabilities (PLWD) in the country. According to Kenya National Bureau of Statistics (2019) Census report, women with disability in the country are 523,883 while 394,330 are men. Majority are living in the rural areas, with only 179,492 living in urban areas – mainly in dense, poor and unserviced informal settlements – rendering them more vulnerable to the COVID-19 pandemic.

1.      Unique PLWD needs in the COVID-19 era

PLWD are more vulnerable due to the nature of their disabilities.  Lack of mobility is the leading disability in the country, followed by those visually impaired and cognition. Others are mental, intellectual, or sensory disabilities. COVID-19 pandemic puts all these categories of PLWD at risk of increased morbidity and mortality. In the current crisis, they are less likely to access health services, and more likely to experience greater health needs, worse outcomes, and discriminatory laws and stigma than other demographic groups in the country. With the limited Government capacity to respond to COVID-19, historical evidence points to the likelihood of PLWD being the least likely to be targeted with the interventions.

The country must therefore ensure that the unique needs of PLWD are considered in the ongoing COVID-19 containment and response planning. Interventions against the pandemic should be available and accessible to the PLWD in high quality and acceptable manner.

Public health messaging ought to also target PLWD and other vulnerable groups and should be disseminated in simple language across all the accessible formats. Strategies for vital inperson communication should be safe and accessible for persons with disability – in braille, sign language and large print. Although it is commendable that daily ministerial and periodic presidential addresses use sign language interpreters, wearing of transparent masks by communicators and health-care providers is encouraged to allow lip reading.

Physical distancing or self-isolation mechanisms – including the mandatory quarantine, the night curfew and movement cessation into and out of Nairobi and parts of the coastal strip – are already disrupting service provision for PLWD in those areas, who often rely on assistance for delivery of food, medication, and personal care. It is feared that escalation of these measures into full national lockdown would adversely affect majority of PLWD who reside in rural areas. 

The Government of Kenya and all duty bearers should therefore design the mitigation mechanisms not to lead to the segregation or institutionalisation of PLWD. Community level protective measures should be prioritized in the alternative, allowing care givers to continue to safely support PLWD, enabling them to meet their daily living, health care, and transport needs, and maintain their employment and educational commitments.

2.      Important public health measures

The main public health measures that should propagated to curb the spread of COVID 19 are as follows:

  1. Improved accessibility to hand washing areas with running water and soap so that PLWDs are able to use the facilities without assistance.
  2. PLWDs should embrace having hand sanitizers with them at all times. They should sanitise their assistive appliances like wheel chairs and crutches to ensure that they are not carriers of the virus.
  3. Use of gloves should be encouraged and the same be frequently sanitized. The assistive devices should be washed with water and soap once they reach home. Caution should be exercised if gloves are used. PLWD should ensure they do not touch their face with the gloves.
  4. Handwashing should be encouraged for personal assistants, parents, guardians of persons with disability who assist them frequently.
  5. Persons with visual impairments who have to use touch to tell their environment should be encouraged to use gloves and if possible, to avoid touch of people and surfaces all together to prevent COVID 19 transmission.
  6. Use of masks throughout by PLWD depending on their disability, preferably one with an elastic to the ears to avoid frequently having to put it in place. Some may need assistance to put on again, so once assisted it should remain in place. Depending on the type of disability, some persons with disabilities have personal assistants, who also have to put on a mask, so that they do not infect the persons with disability and vice versa.
  7. Social distance; currently it is recommended to be 1 metre away, and lately some say 1.5 metre away from each other. This may be difficult especially for persons with disability who require someone to constantly be around them for assistance. This being the case depending on the disability, both the aide and the person with disability should be in a mask. They should have a sanitizer to constantly sanitize their hands. Staying home, remains the best option for all including PLWD.

3.      Conclusion

PLWD in Kenya are indeed at increased risk of severe acute respiratory syndrome coronavirus infection or severe disease because of existing comorbidities, and are additionally facing traditional barriers to health care during the current pandemic. Health-care staff ought to be provided with rapid awareness training on the rights and diverse needs of this group to maintain their dignity, safeguard against discrimination, and prevent inequities in care provision. The Government should ensure that COVID-19 mitigation mechanisms are inclusive of PLWD to ensure they maintain respect for dignity, human rights and fundamental freedoms, and avoid widening existing disparities. 

Of necessity, this includes accelerating efforts to include these groups in COVID-19 containment and response planning. It will require diligence, creativity, and innovative thinking, to preserve Kenya’s commitment to UHC, and ensure PLWD are not forgotten.

 

Disclaimer: All views expressed here are that of the author and do not necessarily represent views/opinions of any entity or agency.

a Public Health and Disability Inclusion Expert

Email: fasindua@gmail.com

______________________

What lessons can the low income Countries like Kenya learn from the Corona episodes? Author Mugambi Paul

When it comes to COVID-19, the only thing we can really be sure of is that we don’t really know very much at all. Mortality rates, the R-0 value (the number

of people each coronavirus patient will go on to infect), just how far we need to stand away from an infected person, whether or not we should wear masks,

and just about everything else about dealing with this virus seems to change with each passing day.

 

Are we dealing with one strain or two? Has the virus mutated? And, importantly, can people who have “recovered” from the virus continue to infect others?

If so, for how long?

 

According to a report by the South China Morning Post

 (SCMP), doctors in Wuhan, China, found that between 3 and 10 percent of “recovered” patients continued to test positive even after being discharged from

hospital.

 

It has already been established that around 25 percent of COVID-19 patients are asymptomatic, and despite not showing any symptoms, are still infectious.

Might it not be possible, then, that patients who are no longer displaying symptoms, but test positive, could still be infectious? As reported by the SCMP, researchers across the globe are working flat-out to determine whether COVID-19 patients develop antibodies that will protect

them from future infections, and whether those who have officially recovered can still infect others.

 

The country with the best recovery rate to date is China, and as such, scientists are very interested in any research to come out of that country.

 

The SCMP reported:

 

The Chinese mainland, where the disease first emerged last December, has discharged over 90 per cent of its infected patients and around 4,300 confirmed

patients are still receiving treatment in hospitals. …

 

Wang Wei, president of Tongji hospital told CCTV’s prime-time programme that of the 147 recovered patients they studied, only five – or just over 3 per

cent – have tested positive in nucleic acid tests again after recovery.

 

Wang and his team insist that their study should not cause concern because there is no evidence that “recovered” patients can still infect others.

 

He told the media that none of the family members or associates of the five patients who recovered in his hospital but continued to test positive went

on to get infected.

Nonetheless, their findings are especially relevant because China now has thousands of “recovered” patients, and if the doctors are wrong, these patients

could go on to infect others.

 

And other Chinese researchers have found that far more than 3 percent of patients who no longer exhibit symptoms still test positive.

 

The SCMP reported further:

 

Life Times, a health news outlet affiliated with People’s Daily, reported this week that quarantine facilities in Wuhan have reported that about 5 to 10

per cent of their recovered patients tested positive again.

 

Previous reports have also highlighted cases where patients tested positive after recovery, including one case study about a family of three

in Wuhan, who all tested positive again.

 

These incidents have raised questions about whether nucleic acid tests might not be reliable in detecting traces of the virus in some of the recovered

patients.

 

Some experts have also expressed concerns about the sensitivity and stability of the test kits, and the collection and handling of patients’ samples.

 

Only time will tell whether recovered patients can continue to infect others or not, but with close to a million patients worldwide and over 50,000 who

have already died, we can only hope and pray that the Chinese scientists are right.

 

 

 

 

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.

 

Will corona 2019 be the answer of removing the disabled Kenyans under the bus by the policy makers? “WHY WE MUST ADDRESS STRUCTURAL INEQUALITIES” Guest Author Mildred Omino

 

World Health Organization declared Coronavirus Disease (COVID19) a pandemic on March 11,2020 following presence of 118,000 cases in over 110 countries and territories around the world with a sustained risk for further spread. At a media briefing, Dr. Tedros, The WHO Director General called upon sectoral and individual involvement in the fight against COVID-19.

Two days after the declaration of the Pandemic by WHO, Kenya recorded the first case of COVID19 amid panic and speculations among the citizens. Prior to the declaration, the disease outbreak was surrounded by myths such as “Children are immune to the Virus”, “The virus can’t survive in high temperatures”, and “The virus affects old people”. With all these myths, Kenyans felt safe since the myths presented a favorable situation to majority of the population. Some of the quick measures enforced by the government of Kenya were, closure of all learning institutions, establishment of COVID emergency response committees at both national and county level as well as regular media briefings on the situation of COVID19 as well as national guidelines on how to contain the virus.

As the virus made top agenda both globally and nationally with infections spreading pretty fast, there was little or no focus given to the impact of the virus on people with disabilities from basic actions such as access to information to critical measures such as emergency response measures to the pandemic.

Globally, the world is home to approximately one billion people with disabilities, eighty percent who live in developing countries and 2-4% experience significant difficulty in functioning. With the increased prevalence of chronic diseases this number is bound to increase. People with disability experience poorer health outcomes, have less access to education and work opportunities, and are more likely to live in poverty than those without a disability. The global situation of people with disabilities as outlined by WHO and World Bank is replicated in Kenya

 

Why We must address Structural Inequalities experienced by persons with disabilities:

In the Wake of COVID19, WHO and respective government ministries of health have developed and advanced key messages around hand hygiene, social distancing, quarantine, isolation of suspected cases and staying at home”.

Majority of persons with disabilities have been missing out on key messages on containing the virus for various reasons such as lack of sign language interpreters during media briefings, lack of information in accessible formats, complexity in messaging for people with intellectual disabilities and “complete cut off on information for poor disabled persons who can’t access television, internet, smart phones merely because the information channels has been social media, radio and television”.

Social distancing has proven to be the most difficult outcome for people with disabilities who are constantly and in fulltime need of personal assistance and personal guides for basic services such as self-care. Little or no information is available for personal assistants of persons with disabilities on best ways of offering care to persons with disabilities during this pandemic, thereby leaving people with disabilities to act in their own discretion.

More so, hand sanitization goes beyond hands all the way to assistive devices such as crutches, calipers, prosthetic limbs, wheelchairs and white canes just to name but a few. This aspect in itself compounds the cost of sanitizers used by persons with disabilities. And for those who do not have assistive devices and are forced to crawl or walk while touching surfaces, the situation becomes even more wanting! The whole aspect of sanitization is either compromised or too expensive if at all it is achievable.

 

The New Normal:

With the outbreak of COVID19 most people are working from home with exception of those who are providing essential services which must be provided on site. Companies/businesses and individuals have quickly adopted to “working remotely” as the only feasible way to contain the spread of the virus. Interesting enough, most jobs in both private and public sector which were presumed to be undertaken in office setting are currently being done from home with support of Technology. One would rightfully think that this “New normal” is the ideal situation for people with disabilities who courtesy of their disability would conveniently work remotely and on ‘’flexi schedules”.

The reality check reveals that majority of persons with disability are unemployed with key reasons for unemployment being inaccessible workplaces i.e. lack of elevators and ramps in office buildings, high cost of hiring sign language interpreters and personal assistants as well as the cost of making adjustments/modifications to office buildings to ensure that they are disability friendly. These scenarios have prompted most potential employers to hire people without disabilities and simply forget about the nightmare of “reasonable accommodations” that would create an employment opportunity for a person with disability.

Potential Employers have also lamented that persons with disabilities lack the requisite qualifications for various jobs. The case of structural inequalities is well demonstrated in education system where learners with disabilities struggles to get education that would adequately prepare them for the job market. The systemic challenges boil down to physical accessibility of learning institutions, inadequate adaptive technology to support disability specific needs, lack of assistive devices and limited or no resources allocated to meet disability specific needs. A small percentage of learners with disabilities make it to higher education whereas majority do not transition from basic education to higher education

Inequitable and socially unjust systems have led to underemployment and unemployment of persons with disabilities leaving most of them to work in the informal sector or to be totally unemployed and a few employed in private and public sector. Post COVID19 it would be important to offer equitable education and employment opportunities now that we know that most jobs can be done remotely without heavy investment on physical infrastructure. Policy makers should desist from policies that lump all vulnerable groups together but rather develop policy guidelines that speak to specific guidelines on how to mitigate the unique challenges of the different vulnerable groups, whether Children, Women, Persons with Disabilities or old people.

 

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

 

Mildred Omino

Founder,Women and Realities of Disability Society

Feminist and Disability Rights Champion

Will it be the “White smoke” from the 10 billion Cash transfer to the disabled Kenyans? Author Mugambi Paul and DR Siyat.

Over the last 3 weeks the Kenyan government has been excoriated on the measure it would avail to the poor due to the hard-economic times and the coming in of Covid-2019 pandemic. Talking of poverty,

several studies show disabled Kenyans are the largest minority who face this tragedy.

Kenyans with disabilities are disproportionately affected by the current situation, as we are by all-natural disasters and major crises. It is vital that our

voices are part of developing solutions, innovating, problem solving.

as 2 experts we are deeply concerned about the impact of the COVID-19 pandemic on disabled Kenyans, chronic ill persons and the elderly. Bearing in mind that Kenyans with disabilities are among the Kenya’s most marginalized and stigmatized even under normal circumstances.

This requires us all to act, interact and communicate in different ways than we are used to. However, the social inequalities

degeneration COVID19’s impact on Kenyans with disabilities are not new. The risk in the response to the current crisis is that disabled Kenyans

will be left behind once again. The good news is that we already know what works. Fundamentally, we need social justice, equality of opportunities and

decent work.

According the UN Special Rapporteur on the rights of persons with disabilities “The pandemic is an unprecedented public health,

social and economic emergency that requires swift and effective action by Kenyan public and private sectors, and the society at large.

We know that COVID-19 is more serious for those with underlying health conditions and particularly those who are immunocompromised. What does this outbreak mean for the Kenyan Disability community?

Both national and county Governments should ensure they take

all necessary measures to ensure the protection and safety of disabled persons, aged and persons with chronic illnesses] Ilo 2020 WHO 2020 UN 2020 HI 2020 [.

 Legal framework:

The United Nations Convention on the Rights of Persons with Disabilities states that people with disability have the right to health without discrimination

on the basis of disability, including access to population-based public health programmes (Article 25) and that governments also have a duty to take all

necessary measures to ensure the protection and safety of persons with disabilities in situations of risk (Article 11).

 

Facts to consider:

Providentially, even in non-pandemic circumstances, people with disability are more likely than the general population to have health issues, compromised immunity, increased

risk of morbidity, comorbidities and are more likely to die from preventable causes] Whiteford 2011 DFID 2013, HI 2015un 2012].

According to several studies Some disabled Kenyans will be unable to maintain social distancing

practices because they rely on support workers for vital daily personal care, such as eating, drinking, walking, mobility toileting and dressing.

in addition, disabled Kenyans often rely on family, friends and care givers to provide essential services. During the Corona pandemic, these people may not be able

to provide their usual support.   

Also, in different Kenyan social media platforms disabled Kenyans like many in the broader community, are expressing anxiety about the COVID-19 pandemic.

Of course, this nervousness is exacerbated by the feeling that they are being left behind or ignored by Kenyan government, private sector and community Corona responses.

Background of social assistance programmes:

Current social assistance programmes include the Older Persons Cash Transfer Programme; the Orphaned and Vulnerable Children Cash Transfer Programme; the Persons with Severe Disabilities Cash Transfer Programme; the Hunger Safety Net Programme; and the Urban Food Subsidy Programme. The effective implementation of these programmes is constrained by challenges such as how to refine inclusion and exclusion criteria and how to determine appropriate transfer amounts.

 

Corona Rescue plan:

We acknowledge the efforts made by Kenyan government by the issuance of the additional 10 billion Kenyan shillings to the ministry of social protection for the vulnerable population in form of cash transfer.

Definitely in the coming days disabled Kenyans expect a white smoke at the NSSF building which houses the ministry of social protection in Kenya.

Most disabled Kenyans are highly expectant of the policy regulations and guidelines on the 10 billion promise by the executive order by the president of Kenya.

Unequivocally, with proper feedback mechanisms and regular consultation disabled Kenyans will be able to know if cash transfer policy programmed will meet their policy needs.

In other words, disabled Kenyans will comprehend how  the 10 billion cash transfer injection to the inua jamii will target the current registered severe disabled persons, elderly, orphans and vulnerable children or it will be meant  for targeting additional new  vulnerable individuals due to the effects of  of Corona 2019. Arguably, much of the debate about cash transfer among disabled Kenyans programmes revolves around the issues of targeting. This is because with the current strategy only severe disabled persons are targeted and considered.

https://labour.go.ke/wp-content/uploads/2019/09/MLSP-Strategic-Plan-2018-2022_17.09.2019.pdf

 

 

This will be a great test as different stakeholders and policy makers in the social protection department scratch their heads on the right footing on which to take in the implementation policy framework.

Will the policy makers ensure inclusion of other disabled Kenyans since they are also mostly vulnerable?

We believe the cash transfer will avert the short-term impact of the Corona crisis and attenuate its long-term negative effects on human development outcomes.

Nonetheless, it is one thing to say that Kenya with Inua jamii -like programmes are sheltering the more vulnerable from the worst consequences of the Corona crisis, and another to recommend that Inua jamii programmes be designed and implemented during a crisis Lehmann, C. (2012. Several steps are involved, political will is required, and funds must be committed. The ministry of social protection has a pivotal role to ensure coordination, operation and more resources even from development partners.

We observe, the Cash transfer programme will be effective if it will be implemented under a sustainable social protection strategy. Such a strategy should enable better coordination among programmes, between the national and county government ,and among the different international players in order to avoid duplication of effort and waste of resources.

For instance, Mombasa have already started a SMS service asking those who aren’t in the Cash transfer to register “widows, orphans, persons with disabilities, and persons with pre-existing conditions into the emergency plan

Has Mombasa county link up with the national cash transfer programme?

Data base and registration for the cash transfer:

Due to social distance directive as a preventive measure of spread of Corona. Will the ministry of social protection work on vigorous registration, collection of data and automation of all new persons with disabilities, orphans and the elderly?

Or will the ministry of social protection synchronize the current departments databases of children services, NCPWD and   department of social development under the strategic guidance of the National Social Protection Secretariat programme?

This will enable to identify the unmet needs through geographic, demographic and welfare status.

Furthermore, quite a lot of reports indicate the current enhanced single registry adapted through the social assistance programme has improved efficiency and reduction of bottlenecks experienced when the ministry of social protection had 3 separate registries [development pathways 2020[.

Through this policy integration the ministry has    a clear database and actualize its programmes effectively Bobonis, G. and F. Finan (2019).

Such database can enable the ministry to build an array of indicators on disabled persons, orphans and vulnerable children, elderly socioeconomic conditions. Therefore, this is a powerful tool for mapping the different needs. and they could be used to guide other policies. Like the current need of food, water, soap and hand sanitizers.  Moreover, Registries enhance monitoring of the poorest families’ access to social services and infrastructure in a more calibrated way than household surveys. The latter, though they are nationally representative, are often based on small samples that do not facilitate sound analysis for local-level interventions. This knowledge base allows rapid crisis response when programmes may need to expand in order to cover a larger proportion of those that fall into poverty.

Key considerations for the cash transfer:

We consider that the ministry of social protection will cast tis net wider in order to seek input from people with disability, leading disability experts, organizations of persons with disabilities and advocates

in developing their dedicated cash transfer strategy, and in particular, in its COVID-19 Coordination

secondly, Disabled Kenyans with disability, particularly slum dwellers and rural inhabitants, may be disproportionately affected by the pandemic due to increased risk of

infection, higher number of co‑morbidities and because of underlying health conditions such as chronic diseases and respiratory illnesses. Numerically speaking, most disabled persons in Kenya live in slum areas and rural areas without basic amenities. Some live-in solitude while others have been housed.

Most of the disabled population and other low-income earners live hand to mouth. This is to say, COVID-19 will spread rapidly and is especially dangerous to people living in close proximity to others in closed settings [WHO 2020].

Worse still, Thousands of adults and children

with disabilities in Kenya live in segregated and often overcrowded residential settings where they can face neglect, abuse, gender-based violence, and inadequate health care and lack human Rights.

Of particular concern are women and girls with disabilities.

This affirms that disable Kenyans are survivors in this country [KNHR 2015]

 

Thirdly disabled Kenyans continue to face barriers in accessing health care, including prevention, testing, screening and treatment for COVID-19. Fourthly, disabled Kenyans will be   unable to access regular and vital medications and therapeutic services due to low supplies and restrictions in access. Fifthly, disabled Kenyans may not have access to mental health services at a time when the need for accessible and responsive mental health is heightened. Sixthly,

disabled Kenyans will be unable to easily access essential health supplies to keep themselves safe, such as personal protective equipment, hand sanitiser and sterilising

Equipment.

lastly are worried that discrimination or unconscious bias could impact their access to critical and lifesaving health care during this crisis.

to we hope the measures taken will ensure the needs of all Kenyans with disabilities are included in

the response to the pandemic.

As experts we appreciate and acknowledges the challenges that national and county governments and private sector are facing during this pandemic.

 

We call upon all national and county governments to ensure that, in their responses, they include dedicated disability strategies to protect and support disabled Kenyans.

Long term solutions:

We opine that Kenya is still a developing nation We therefore suggest inclusion of one our BBI recommendations which we presented at the task force in February 7th, 2020 as a long-term solution.

  1. Ministry of social protection to establish a disability employment service department under the national employment authority since the authority is in charge of all Kenyans in need of employment. so that they are able to execute employment needs of persons with disabilities Through this agency real disability mainstreaming will be achieved. If this recommendation will be adapted, we believe rapid change will take place. We opine disabled persons won’t need to be in cash transfer for long since cash transfers are not meant for long term programming.
  2. We hope the ministry of social protection can take advantage of the Corona crises to execute of reasonable accommodation plans in all its organs and offer vital lessons to both public and private sector.

All in all, our policymakers will have to come up with a homegrown resolution for ensuring disabled Kenyans rights are protected. And this will not be easy.

 

 

 

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

 Mugambi Paul is a public policy, diversity, inclusion and sustainability expert.

Dr Siyat is a  independent  consultant and systemic advocacy service provider.

 

Why Social Isolation is a Greek term to the disabled Kenyans: Author Mugambi Paul

Several studies indicate that in an emergency person who are disabled, aged and who have chronic illnesses are mostly left behind and most at risk [Help age 2012, HI 2019, UN 2020, WHO 2020].

This is because persons without disabilities will be fighting and running away for their fate. As evidenced many Kenyans have started to go back to the rural places.

 

As a public policy scholar and with lived experience of being disabled and advocate for inclusive approaches in both humanitarian and development spheres.

I am concerned on the current and feature effects of Corona on lives of disabled Kenyans and chronically ill people who are currently falling into cracks.

In other words, they are

being hit and particularly hard by the virus outbreak and access to support services seem to be becoming scarce and finally

will be cut as the crisis worsens.

Evidently, in Nairobi and other major towns Panic buying of cereals, groceries, toilet papers, hand sanitizers and other protective equipment, which also disabled and chronic ill people need have suddenly doubled the prices and also have started to be scarce.

I  observe,  Kenyans without disabilities  and who can stockpile are the ones who are probably less at risk because they were able to rush out to the shops, whereas a lot of disabled Kenyans like  me,  elderly, e and persons with   chronic illnesses just can’t get these commodities.

This is coupled with high poverty levels among the disabled Kenyans.

On the other hand, the Cabinet secretary of Health gave a directive prioritizing the elderly and persons with disabilities in the queuing system in the supermarket [daily nation Friday March 2020[

This pronouncement shows that disabled persons have started to be brought in in Corona conversations though much needs to be done in order not to live us behind. If this directive will be followed, we are yet to see.

 

Could the Kenyan supermarket borrow a leaf from Tesco in the United Kingdom or supermarkets in Australia?

In both nations they have reasonable accommodation for ensuring disabled persons, elderly and persons with chronic illnesses are able to shop comfortable and provision of delivery for those with large shopping.

The Corona virus has equalized us all and it has led to the realization that what works for all works for disabled too] UN 2006 UNDP 2017 ILO 2019 Whiteford 2019].

 

Dilemma of social distance: you

 

Social distancing is not an option for disabled Kenyans. The Kenyan government and more so the ministry of health and disability stakeholders need to go back to the drawing board in order to address the needs and priorities of disabled Kenyans so that we can have inclusive corona interventions.

Of course, many Kenyans with out disabilities take things for granted. This is because most will never fit in to our shoes till when they join our disability club.

For instance, Kenyans    with a disability, who rely on care givers and support workers for daily living and sighted guide services including washing and dressing.

I am talking about people with spinal cord injuries, muscular dystrophy, cerebral palsy, sometimes people with intellectual disability, psychosocial disability, the elderly, Down syndrome,

that might need assistance with showering, with going to the toilet.

Moreover, social stigma in Kenya is still ripe,

Shoppers who ar blind and vision impaired will not get sighted guided assistance in the shopping spree due to the continued pronouncement by Kenyan government that we should be one metre point five away and avoid handshakes.

in case the president issues an executive order of total or partial lock down, I observe the disabled will be worst hit even withing there local surroundings.

Did you know most of the local shopping areas are highly squeezed and have low ventilation?

How will my fellow wheelchair users avoid assistance not being close while many of the wheelchairs in Kenya are manual?

Furthermore, some disabled creep on the floors!

How will they shopwith out contacts?

Most Kenyan roads are inaccessible how will the Blind and vision impaired avoid falling in to ditches and trenches?

Our independence and self estieem by the use of assistive divides is being questioned!

How can this non handshake apply to mobility impaired persons like Blind, Crutch users, wheelchair users?

Does the Cabinet secretary of Health and policy makers know our devices are metallic?

What if the care giver is infected and need to self-isolate?

This will make Disabled persons become at higher risk,

Additionally, the actual time and effort of finding somebody else, finding the right person that’s going to fit, as well

as then training someone up from scratch again, is a huge effort for people with very high support needs who are going to be in that really high-risk category. The ministry of health needs to train its front-line staff on basic disability inclusion tips

 

Why are the disability sector and stakeholders silent as the lack of disability inclusive Corona continues?

Are they contributing to uninterrupted discrimination and injustice to the larger wanjikus with disabilities?

I suppose they are hiding and later after the Corona era is over, they will claim we were left behind!

The Kenyan media should rise to the occasion and speak on behalf of the disabled Kenyans and persons with chronic illnesses.

Contribution by disability sector:

The disability sector, human right bodies and other policy stakeholders have the role to monitor and report the government organs on the said implementation.

This is actually time for disabled experts, disabled persons organizations, human right bodies state organs practising disability mainstreaming should contribute to more inclusive Corona interventions.

What if the Kenyan disabled stakeholders changed tact and start to advocate for now the silent revolution of reasonable accommodation being implemented?

To put it differently why doesn’t the disability sector join the table instead of awaiting to be in the menu?

I opine, Kenya has great public policies on reasonable accommodation now is the right time to,

push for implementation.

let me illustrate

What if the disability sector and stakeholders pushed the national construction authority now to publish and implement real accessibility standards of buildings?

Most likely we shall have makeshift hospitals. Will they be accessible?

Why don’t the disability stakeholders within their budgets adjust and contribute to the ministry of health on inclusive approaches?

For instance, developing Kenyan sign language clip on how to prevent Corona virus then distribute to the mainstream media and social platforms?

Why don’t the disability stakeholders produce material into braille and distribute all over the country through the free matter for the blind service offered by poster corporation as entrenched in the persons with disabilities act 2003?

Does the disability sector know the time is now for implementing the Marrakesh treaty?

Could the global commitment made by Kenya government, private sector and disability stakeholders be revisited in the area of innovation and make non-metallic assistive devices?

 

All in all, this coronavirus comes with a silver lining. At least, it will pep up people to take normal civic sense to a higher status. So that besides coronavirus

we actually end up also fighting other issues like discrimination faced by Kenyans with this will lead to breaking some if not all the barriers that disabled Kenyans face.

 

 

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 are pregnant in the Corona era: Author Mugambi Paul

 

Generally speaking, The COVID-19 pandemic occurring in Kenya should be of utmost concern to every citizen. This is because we need to work together around the country in solidarity.

Ofcourse, the risen times are extra-ordinary. This is the times that will redefine Kenyan human spirit.

 Are we going to ensure disability-inclusive, accessible disaster-response?

On my own behalf and the disabled Kenyans

 We acknowledge the great leadership displayed by cabinet secretary Mutahi Kagwe of ministry of health under this difficult circumstance. Moreover, the CS is communicating in to minds and hearts of all citizens. Could this be adapted as the new norm to Kenyan organization culture of governance?

 

On the other hand, the Corona virus seems to have equalized all of us and the realization of the economic inequalities that exist among low income Kenyans

Amongst these is the largest minority “Kenyans with disabilities” of who make up more than 15 % of the population [WHO 2011]. we need to examine corona virus by waring the disability lenses.

On March 20th, 2020 during the daily updates a more disability inclusive approach was adapted.

This affirms that the CS is a great communicator.

though much needs to be done to realize disability Inclusive approaches.

As a  public policy scholar and a  person with lived experience of being blind I  opine that if what the CS health interventions were to be made long term policy execution the Kenyan  government will  overcome many challenges of including persons with disabilities and resolve the  unemployed citizens  mystery.

In other words, our policies must not discriminate. Disabled and low-income people must be included in every policy, every fund, every new law.

This is the real meaning of disability mainstreaming.

 

Background:

 

Kenyans with disabilities’ needs and concerns should be adequately addressed in existing COVID-19 Kenyan relief packages. 

I affirm that Disability impacts every community and occurs at every stage of life. In addition to impacting Kenyans with disabilities more disparately, the virus is also likely to create disability while people recover [WHO 2020].

Fact to consider:

I believe The Corona virus has awaken the public consciousness of what works for the disabled Kenyans can also work for all

Challenges faced by disabled Kenyans:

Unfortunately. Clean water and sanitation facilities aren’t always available or accessible, particularly for Kenyans with

Disabilities and the low-income earners [UNICEF 2017[.

Are the newly 500 water points in Nairobi accessible to all disabled Kenyans?

 Life-saving information often doesn’t reach those who are deaf, blind, using wheelchairs, illiterate, Deafblind or living in remote areas.

I uphold this global health emergency, the ability to read timely information in an accessible format is even more critical than usual. I   believe the more people access and act upon the information that Ministry of health leaders and public officials are

providing, the better we Kenyans can all cope with the rapidly evolving situation.

 

 

 Furthermore, the corona virus puts people with chronic diseases, Kenyans with disabilities, and the elderly most at risk. could the ministry of health issue a statement regarding rationing of care to ensure that when rationing treatment begins, decisions about how medical treatment should be allocated are made without discriminating based on disability?

 

 Worse still, the Kenyan health system is

not prepared. In China it is reported already some disabled persons have died due to starvation and nonattendance.

Information campaigns and medical care must include the needs of Kenyans with disabilities. It is pivotal that Kenyan state as a duty bearer identify and monitor people with

disabilities in their communities. Frontline staff need training on caring for people with disabilities in the crisis.  The ministry of health should also ensure protection of the front-line health workers by provision of the equipment which they need to execute their work safely

masks, gowns, shields, gloves, suits, and other equipment. Therefore, preventing further spreading of COVID-19.

I urge the Kenyan public policy makers and stakeholders to think boldly and broadly in their response to this pandemic and waste no time saving lives and have actionable long-term policies and regulations.

 

Different ILO studies have affirmed with proper reasonable accommodation execution productivity is high and brings diversity. For instance, If the ministry of public service, ministry of labour, federation of Kenya employers, employment authority, ministry of transport, disability experts can work together via video link can craft a reasonable accommodation regulation.

This is to say with flexibility and

creative solutions are more important than ever in this Corona era.

With this regulation, the president with his executive power ascent can save Kenya a great deal.

several studies and additional public health experts have stated that disabled Kenyans are more vulnerable to COVID-19. Beyond the specific conditions or diagnoses that may raise susceptibility to the virus itself, Kenyans with disabilities are particularly vulnerable to the broader social, civil, and economic impacts of the coronavirus pandemic.

Thus life in Kenya will never be the same again.

will this be a turning point for Kenyan Parliament and senate to ensure a inclusive social protection cover for the marginalized?

  Outlined below are a series of expectations that could benefit Kenya in the long run:

  1. Prioritize and Expand Home delivery services. This can be done through acceleration of M-post services since most Kenyans have Mobile phones additionally more private delivery companies can also be incorporated with a particular county. This would reduce the social contacts since most Kenyans go seeking for goods outside there vicinities.
  2. 24 shift working economy: this can be accelerated by both public and private employers thus even reduction of man hour spent on traffic. Moreover, through shift working economy it would increase work productivity. Some best practises can be borrowed from the private sector. Could this be an opportunity for implementing 2030 vision? Additionally, if adopted in Nairobi, Kisumu, Meru and Mombasa can say by bye to the traffic menace. Could the new Nairobi Metropolitan team adapt this?
  3.  

Prioritize access of digitalized documentation: if this was to be adopted most government documents would be gotten easily. For instance, one of the best recently successful is acquiring renewal of tax exemption among the Kenyans with disabilities although now with the advent of Corona Kenya revenue authority and NCPWD needs now more than ever to decentralize the service. This would actually reduce the transport expenses incurred by Kenyans and also save working hours.

  1. Cash transfer uptake: As the coronavirus crisis has caused a significant economic downturn, I believe that it is essential for ministry o of treasury  to authorize an increase in cash transfer programme to the ministry  of social protection in order to reduce the economic shocks among persons with disabilities,  the seniors of Kenyans   and their care givers. Who are already vulnerable and not covered with the current cash transfer programme.

This move will enable government of Kenya to reduce vulnerability levels.

5 food access:

Regular access to healthy food is key to maintaining strong immune systems. I   encourage the Kenyan government to expand access to food distribution during this period especially to chronic ill persons, the low-income earners, disabled Kenyans, the slum areas and vulnerable populations.

Regrettably, many Kenyan families even before corona era were living under distress for lack of one meal a day.

 Sadly, many Kenyans ability to keep and maintain employment will be impacted by both the business and transit closures.

If short term measures are not taken this might lead to civil strife and increase of psychosocial disabilities among Kenyans.

6.Access to transport: the Kenyan government can support the public transport sector by having reduction of oil prices thus preventing Kenyans from paying extra charges.

Additionally, the government owned busses offer the services to support the private owned public transport services with the new half full caring capacity policy implementation. Where are the NYS busses?

 I observe there has been increased discipline in the Matatu industry by the reduction of congestion by the ministry of Health directive.

Environmentally speaking, drastic air pollution has reduced.

 

How I wish it was a daily Norm in the public transport.

Could the government offer tax wavers for public transport to acquire disability inclusive buses?

 

7. Implementation of accessibility standards.

The national construction authority and disability stakeholders should rally behind and ensure when makeshift hospitals,

isolation facilities and construction of new hospitals are fully accessible and equipped with accessible beds.

Therefore, Duty bearers should ensure disability civil rights protections are fully protected since rights   are not negotiable. I believe time is ripe to enforce and implement article 27, 54 of the constitution and persons with disability act 2003 for protecting rights of disabled Kenyans.

  1. inclusive economic stimulus: Kenyans with disabilities must be included in the economic relief proposals now under consideration by the private sector and Kenyan government. Given that COVID-19 poses unique risks for Kenyans with disabilities and other low-income earners that may make it more difficult for those who are not in any form of employment. This will enable people with disabilities and low-income earners to be able to survive during the current crisis. The economic stimulus should be easily and equitably available for all. Of particular concern are men, women, girls and boys with disabilities.
  2. All of these recommendations are critical to addressing the spread of COVID-19 and addressing our nation’s public health more broadly and ensuring we meet the SDGS by not living any one behind.

As the Rev. Dr. Martin Luther King said, “We are caught in an inescapable network of mutuality, tied in a single garment of destiny. Whatever affects one directly, affects all indirectly.” The fragile state of this “network of mutuality” has become all too apparent during the coronavirus outbreak. Though we may be vulnerable, we are not dispensable. In fact, disabled Kenyans have critical experience to share in adapting to challenging and constantly changing situations affecting our health, employment, education, housing, and families–experience that all fellow Kenyans will need in the days and weeks ahead. We are grateful for the urgency with which the Ministry of Health is moving to make sure that the Kenyan people never feel the worst of this pandemic, and am seeking  only to protect Kenyan disability  community from the unintended but all too foreseeable impacts of discrimination.

especially during all phases of disaster preparation, response, recovery, and mitigation.

 

 

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 catastrophe of being Blind and Disabled in the Corona era “Lessons for Policy makers!” Author Mugambi Paul.

Kenyans living with disability are a vulnerable group; a larger proportion are older, and with underlying health conditions. Almost half of all people with disability
are aged 65 and above. And only 24% of adults with disability experience very good or excellent health, compared with 65% of without disability [world report 2011].
Apparently in Kenya, Disability is generally very misunderstood and very unacknowledged, even though 15 % of disabled Kenyans make up the population.
The world is paying close attention to the outbreak of novel coronavirus, following its emergence in December 2019 in Wuhan, China but the voice of disabled Kenyans is still inadequate.
This is because of lack of political influence, inadequate social services and lack of opportunities to adapt.
This indicates The rest of 85 % of Kenya’s population is engaged.
Over the last six years, the health sector in Kenya has exhibited significant developments, including the introduction of the Linda Mama (free maternity) initiative, the Beyond Zero campaign, efforts to revamp the National Hospital Insurance Fund (NHIF), as well as a multi-million dollar Medical Equipment Leasing scheme aimed at bringing advanced medical equipment closer to citizens across the 47 counties and in key referral facilities.
The inclusion of health in the president’s legacy priorities (Big Four Agenda) underlined this stated commitment to improving healthcare.
This obviously follows the Constitutional requirement, Kenya Health Act 2014 and Kenya Health Policy 2014-30. In addition, Kenya has ascribed to the Sustainable Development Goals (SDGs), including SDG No 3, that commits governments to provide quality healthcare for all.
Are these Kenyan Health regulation disability inclusive?
Data evidence:
According to latest data over 132,000 cases of Coronavirus disease (COVID-19) have been reported and 4,900 people have died. The virus has reached 123 countries [WHO 2020[.
How does the virus spread?

Epidemiological evidence shows that 2019 nCoV can be transmitted from one individual to another. During previous outbreaks due to other coronaviruses, including Middle East respiratory syndrome coronavirus (MERS CoV) and the Severe Acute Respiratory Syndrome coronavirus (SARS CoV), human to human transmission most commonly occurred through droplets, personal contact, and contaminated objects (fomites). The modes of transmission of 2019 nCoV are likely to be similar.
The precise zoonotic (animal) origin of the 2019 nCoV is still uncertain. The virus has been identified in environmental samples from a live animal market in Wuhan, and some human cases have been epidemiologically linked to this market. Other coronavirus, such as SARS and MERS, are also zoonotic, and can be transmitted from animals (civet cats and dromedary camels, respectively) to humans.
On the other hand, With the outbreak of a novel coronavirus declared a pandemic by the World Health Organisation, people worldwide are working to address it.
According to the WHO Director-General Tedros Adhanom Ghebreyesus said in a terse statement that this is the first time the world is battling a pandemic against a coronavirus disease.
This has seen nations executing travel bans to sport shutdowns. Meanwhile other countries like Italy, Denmark, Estonia, Latvia and rwanda have locked out their countries.
coronavirus is changing life as we know it. It’s tough to know who to trust – that’s why it’s vital to receive facts.
Disabled Kenyans are at higher risk due to the multifaceted related factors in addition of having a disability. WHO is warning people across the world to avoid contact?
But populations in less developed countries like Kenya are wondering how that is possible when they still need to go to search for food, work, purchase items, go to church or mosque or connect with family and friends.
Key factors:
Rise of stigma and discrimination.
Already in existence it will be Upsurge by the lack of shaking hands as announced by the ministry of health.
Of course, Many Blind and disabled persons require support when crossing the busy Thika superhighway or the Westland routes.
For instance, Crutch and white cane users tend to touch metal rails, touching escalator handrails, using traffic light buttons, reaching for train door opening buttons and holding safely
on to handrails on public buses and Matatus while crossing, some may require to be held while crossing.
how can we avoid handshake?
I observe many disabled Kenyans are anxious. This is because we can control what we touch, but we can’t control what
other people have touched.
Will the ministries of health or ministry of transport provide qualified volunteers?
Or will the ministry of health or transport provide protective products like hand sanitizers to the public transport providers?
I observe, With the Corona in place discrimination and stigma will rise in totality since citizens with out disabilities will be having social distance thus disabled Kenyans might stop seeking services or refuse to travel.
Coupled with poverty levels many disabled Kenyans will not afford the buying of the required protective gears like hand sanitizers.

Second factor is Isolation:
Several studies show disabled persons have lived in isolation for long and this will be a lesson for persons without disabilities.
majority disabled Kenyans are at increased risk of serious or fatal complications from COVID-19 (coronavirus). In an active community outbreak, the
safest option may be to self-isolate at home, perhaps for weeks or longer. In order to prepare for this possibility, I believe its high time the Kenyan ministry of health recommends
that people at high risk stock up on necessities, including maintenance prescription medication.
Worst still, many disabled Kenyans can’t take this advice because m95 % of the disabled do not have insurance.
This is a great chance of disability stakeholders to network with the national hospital insurance fund to probably register all disabled persons visiting the health service providers.
Moreover, the lack of insurance as a social protection measure has left many disabled Kenyans to be more vulnerable.
Solution for NHIF:
I would suggest NHIF recognizes and automates its system to include the disability card issued by NCPWD.
Absolutely this would increase the uptake of insurance among disabled Kenyans.
Will the Kenyan legislature enact an insurance regulation of eliminating the wait time for employment insurance payments?
Third factor is Logistics:
Unfortunately, accessing the pharmacy can be risky for some disabled Kenyans and people with chronic illnesses and even pregnant women.
. Some people with disabilities may also face logistical challenges in getting to the pharmacy if support services become disrupted
due to sudden rise of isolations and being left behind.

Moreover, the Kenyan pharmacy are yet to embrace the mailing services. This could have been a solution instead of putting all at risk.
Will the delivery companies in Kenya grab the opportunity?
The ministry of health has announced measures of
Of ensuring localized outbreaks and social distancing measures are observed.
Absolutely, in some countries already there is massive disruption of supply chains. What can Kenyans with disabilities learn?
Disabled Kenyans and persons with chronic illnesses can’t stake their lives on the assumption that the availability of medications will remain stable in the coming weeks and
months. They need to be able to stock up now.

I opine that Disrupting treatment always endangers patients, but even more so in a pandemic.
The need for inpatient treatment will likely exceed capacity in many communities. this is because Kenya and other developing countries we still have weak health systems and inadequate health infrastructure. COVID-19 is expected to heavily tax the resources of the Kenyan health care system.
Will Kenya now revisit the Abuja declaration on Health Budgeting?
Further Than, outpatient clinics are likely to have a high number of patients
seeking treatment for COVID-19 symptoms, making avoidable visits risky for those more vulnerable to complications. Additionally, patients whose chronic
conditions are destabilized are in danger of becoming more severely ill if they are infected with COVID-19.
Water access:
In Kenya water access is a major challenge for all. Will the Kenya government break the cartels in the water industry to ensure water is readily available?
In Nairobi, Mombasa, Kisumu and other major towns its proven fact that many households go for several months without accessing running taps and forced to buy. According to UNICEF 40 per cent of the world’s population, or 3 billion people, do not have a handwashing facility with water and soap at home. Nearly three quarters of
the people in least developed countries lack basic handwashing facilities at home. Further, 47 per cent of schools lacked a handwashing facility with water and soap affecting 900 million school-age children. Over one third of schools worldwide
and half of schools in the least developed countries like Kenya have no place for children to wash their hands at all.
Forth factor nonvisual access:
Kenyans who are Blind or visually impaired do not have equal access to quantitative information including charts, graphs, and maps. For example, many of
us simply cannot perceive the data visualizations and dashboards that are regularly published by mainstream news organizations. As a result, we often have
limited or non-existent access to critical data, including information we aneed to make informed decisions pertaining to our work, finances and health. As
charts depicting the spread of Coronavirus and modelling how to flatten the curve are seen and discussed worldwide with Blind and visually impaired people
largely excluded from the conversation, we are starkly reminded that nonvisual access to data is vital to our equality and well-being.
The charts and graphics popularly known as “data visualizations” can – and should – be represented in formats that Blind and visually impaired Kenyans can
use.
Effects of COVID-19 on employment:
Centrally, my thoughts seem to be telling me a silent reasonable accommodation revolution in workplaces is being executed globally by Covid-19
as envisaged in the UNCRPD.
For instance, some tech companies Multinational like apple and google are demanding their employee to work at home. According to ILO 2017 with proper reasonable accommodations companies can benefit allot
This is to say that allowing employees to work remotely encourages more equality in the workforce by allowing more people with chronic illness and disabilities to participate and some studies show employees even report that they perform better in remote arrangements.
.
I believe working at home will assuaged persons with chronic illnesses and also individuals’ who are having low immunity.
Will the disability policy makers and employment gurus stakeholders rise to the occasion and present a reasonable accommodation legislation?
Now the people without disabilities we see your ableism tendencies being put in the right place
This shows implementation of disability related rights is possible. Should public and private sector await a catastrophe to implement disability laws?
It’s a fact that in Kenya after the road tragedy in 2002 by the Third president who was sworn on a wheelchair made the signing of the persons with disabilities act 2003.
Will public and private sectors reduce demand for office spaces?
Will public and private sectors in developing nations like Kenya adopt 24 hour economy by having there staff to work on shifts in order to avoid social contact?
Will companies in developing countries stop the analogue economy and switch to digitalization?
What does this mean to both employed and unemployed disabled?
What does COVID-19 mean to the almost 70 % of informal employment in Kenya who do not use digital devices?
All in all, we need disabled persons organizations to be engaged in advocacy on protecting people with disabilities from COVID-19 in both national and county levels.
This is by way of ensuring we have inclusive emergency plans and actions.

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.

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.

Celebrating our super parents: Guest Author Odumbe Kute

It occurred to me yesterday after something I posted that prejudice and discrimination, whether conscious or sub-conscious is a very big deal in our lives.
I’ve been a disability and human rights activist for over 24 years and the one thing that rings true through all the work I’ve done around the world is
this. No amount of legislation, education and advocacy will ever cover for ignorance and prejudice about disability that is experienced every single day
by those affected.

It’s not just the general public. The worst offenders are family, close relatives and people who masquerade as friends. The thing is this. Most people
act the way they do, discriminate like they do, judge like they do, say really stupid and very hurtful things like they do, gossip like they do, show their
prejudice like they do because they’re afraid. You’d like to think that they’re just ignorant, but the truth is that they’re afraid. Afraid of what is
different, afraid of their own insecurities, afraid of how they would cope if they were ever in a situation where they would acquire a disability, give
birth to a child with a disability, have a spouse who acquires a disability or have to care for someone with a disability.

They go around calling themselves “normal”, whatever the hell that is. Here’s a wake up call. At least 1 of every 5 people in the world has a disability
of some sort, most of them hidden and not visible to people. It could be mental health, it could be chronic back pain, it could be sickle cell, it could
be a neurological condition ranging from autism to ADHD, it could be any number of debilitating conditions that people are shit scared to talk about for
fear that they might get labelled or judged. They refuse to look at it as a disability. They only choose to consider disability as a physical and medical
thing.

I haven’t even begun to talk about the hundreds of thousands of parents who have a differently abled child. Our society is brutal. Take the mothers of
kids with a disability from autism to CP, from physical to sensory disabilities. Those who stay in relationships and marriages after giving birth to a
differently abled child are considered the lucky ones. But are they really? Most mothers of children with a disability are single because they’ve been
abandoned at the traffic lights. They’ve been ostracized and become outcasts in their own families, in their marital families, amongst their friends and
relatives. They are seen as vessels of witchcraft, accused of bringing forth defective offspring that sully the gene pool of the family. They not only
have to deal with the challenges their child or children face, they are also as individuals, totally discriminated against and judged for every move they
make.

Let me tell you something about these women. They are amazing. They are Ninjas. They are super women, most of whom have to give up their entire lives,
their hopes and dreams and they sacrifice everything to give their differently abled children the best chance they have in life. They live isolated lives
because of the open and mostly hidden discrimination they face by people closest to them. But the one thing that will never be taken away from them is
their resolve, unconditional love, determination and sheer stubbornness in not giving up their default role as primary care givers to their children.

Most if not all these women go through hell every single day to make sure that their children have the best they can have in life, despite their individual
means. Some can hustle and get a shilling here and there, some don’t have that opportunity. Even for families who would ordinarily be financially stable,
the cost of therapy, medication, education, nutrition – you name it, is capable of bringing them to their knees. Some of these women cry themselves to
sleep every single night praying to their God and asking why he or she has forsaken them. And yet, the next morning, they wake up and do it all over again.

I submit to you that you “normal” people as you call yourselves; you people who have perfect lives that allow you to pass judgement over those who have
a different life; you people who stare and shake your head in disgust at a mother whose autistic child is having a melt-down in a supermarket and saying
that “what is wrong with that mother, her child is spoilt”; you people who have the luxury of not knowing the pain of a mother with a non-verbal autistic
child who is in unbearable pain and distress and unable to express themselves; you people who judge and come out with ignorant and stupid comments like
“that one was bewitched”, “that one’s dowry wasn’t paid and that’s why they have a disabled child”, “that one must have done something in a previous life”
– I submit to you that whichever God you pray to is kind enough to have spared you and gave you the right to be ignorant and stupid. Because if you were
ever in the situation that others are in, society has to be lucky that your not one of the ones who will be able to cope with the burden and responsibility
of caring for and loving someone who is different. Pray to that God of yours to never put you in a situation that you become disabled, a spouse or child
of yours becomes disabled, or you give birth to a child with a disability.

Why have I written this post you may ask. It’s because of the sheer amount of in-box messages I’ve got from parents of children with a disability, mostly
those on the autism spectrum, who were absolutely furious that I had to explain that my son is autistic to parents that commented on my post and took the
“your child is bloody spoilt” view. There is a parallel here to real life where the constant need to explain to those who are discriminatory and prejudicial
has become tedious for them and enough is enough.

Let me conclude with a simple example. A couple of weeks ago, a distressed mother on one of the support groups posted a question asking what they can give
their autistic child to calm them down when she has guests. Let me first say, many kids on the autism spectrum will be on medication, and this should only
be for their benefit and if it improves their development. But the thought of having to medicate your autistic child to make it easier for guests? I was
like – Fuck that. The only intervention needed is to bitch slap those guests out of your house. If your own guests cannot come to terms with the fact that
your child is autistic, they have absolutely no right to be guests in your home, let alone friends.

The Outrage of the missing data of women with disabilities in Kenya “where are you my sisters?” Author Mugambi Paul.

The upcoming international women day’s gives scholars, practitioners and other public policy stakeholders to ask ourselves the pertinent question.
Has Kenya done well in advancing the rights of women and girls with disabilities?
Has Kenya broken the barriers of inclusion of women with disabilities?
Has the disability space been accommodative of women with disabilities?

As a public scholar I join in the reflection of the Kenyan disability public space.
Absolutely not, this is one of the debates which the stakeholders in the disability sector need to engage.
Are women with disabilities actively engaged?
I live that to other analysts. As a matter of principle, I say representation matters.
On the other hand, I thank the president of Kenya having appointed Madam MUkhobe at the highest decision-making organ in the country since 2013.
Where is the Data and statistics of the disabled?
Numbers don’t lie.
Globally disabled persons are at 15 %.
3.8 of the are persons with moderate to severe impairment.
5.1 % of the children with disabilities are below the age of 14.
0.7 % have severe functional impairment.
19 % are women with disabilities world report 2011.
To put matters into perspective, In the latest 2020 national council of population report has no data of women or girls with disabilities.
Does this mean that women and girls with disabilities do not get pregnant?
Are women and girls with disabilities not sexually active?
Different media channels on a weekly basis in Kenya have been reporting of how women and girls with disabilities have been experiencing gender-based violence in the hands of family members or even under the institutions mint to support them.
I believe This is another big blow to disabled persons in Kenya after the release of Kenya bureau of statistics 2019 census report. Which in essence reduced the data of disabled Kenyans.

Will disability sector continue with the same old ways of addressing this challenge?
Will the disability sector move out of board rooms and actualize the dreams of girls and women with disabilities?
Does the national council of population have a disability mainstreaming committee?
The lack of disability desegregated data will obviously affect planning and service delivery for girls, boys, men and women with disabilities.
In other words, the national council of population affirms that women and girls with disabilities have never experienced gender-based violence nor gotten pregnant.
Let me remind the disability stakeholders women with disabilities are more likely to experience sexual violence than women without disabilities.
This is also coupled with disabled Kenyans who face barriers to accessing services in both public and private sectors.
Most disability policy stakeholders know the barriers that disabled Kenyans face but have refused to actualize them.
Disabled Kenyans persons have been left chanting in the social media as a tool of advocacy.
Am not surprised to note in March 4th, 2020 a person with physical impairment was begging for a wheelchair on in one of the social media platforms.
Which system works for disabled Kenyans?
Will the Big four agenda be realized for disabled persons?
When will Kenya declare begging an economic enterprise for disabled persons since the constitution provisions aren’t working for disabled Kenyans?
several studies show Women and girls living with disabilities often face additional marginalization in their experiences of abuse as well as specific barriers to accessing services, due to:
• economic and/or physical dependence on the abuser, which challenges efforts to escape (particularly within family and sometimes institutional set ups. Several research in Kenya have indicated women with disabilities have suffered from forms of abuse specific to women living with disabilities (e.g. withholding of right medications, like the case of national children council exposed by NTV Kenya in 2019.
research done by women with disabilities organizations in Kenya show denial of assistive devices is also rampant.
Additionally, there is also refusal to provide personal care), which are less documented and may not be explicit within legal definitions of abuse.
For instance, Menstrual Health in Kenya: Landscape Analysis published in May 2016 never showed the extent to which women and girls with disabilities can’t access sanitary pads.
As Well lack of or limitations in physical accessibility of venues for women with disabilities still remains one of the barriers.
Furthermore, perceptions by service providers like health continue to plague the system in place.
This is because many believe that they cannot provide services for women with disabilities given their resource or capacity limitations. Mainstream women organizations and women service providers have not entrenched any inclusive measures of engaging or consulting women with disabilities.
In other words, lack of programming informed by and implemented in consultation with Kenyan women with disabilities or misinterpretation of their needs in escaping and overcoming the abuse they have experienced. Thus, having gaps in collaboration between disability organizations and service providers supporting survivors, as well as assumptions by each group that survivors are served by the other. A study by Kenya national human rights commission in 2015 indicated low sensitivity among law enforcement personnel or other service providers, who may not inquire about abuse by caretakers, or disregard reports from women with visual, speech/communication or motor coordination disabilities (e.g. cerebral palsy), assuming they are intoxicated or are not serious in their claims. The KAIH who have been working closely in the legal apparatus affirm that biases among judicial personnel and courts is evidently seen.
For instance, cases of provision of preferential treatment to the abuser in child custody due to the victim’s disability (

What can disability sector and stakeholders do to change the narrative?
Develop Strategies and tools to prevent violence against women with disability. E.g. have inclusive training tools on gender violence.
Ensure collection of data collected is gender, age and disability desegregated in reporting and monitoring
Share best practices of gender and disability equitable practice
develop inclusive Referral system and services which can assist in responding to women with disability who experience violence
have more role models among women with disabilities.
Collaborative initiatives with the mainstream women organizations
list end support men with and without disabilities who are supporting reduction of gender-based violence initiatives.
Conduct inclusive training to service providers in both health and law enforcing agencies.
Ensure engagement and meanful consultation with women and girls with disabilities from rural and urban set up.
This will actualize the slogan not living any one behind as the sustainable development goals advocate.
global commitments 2018.

In conclusion:
The truth of the matter is Kenya is known to have progressive disability
related laws and policies but poor implementation is the order of the day.
As a result the dire state of affairs of women with disabilities is not due to lack of new ideas. The biggest problem is lack of capacity to take up and implement the new ideas in existing policy documents.

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.

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

Background:

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

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

1. The treasury normally conducts public budget engagement every year both at national and county levels: the disability movement could have presented their own version of budget which could have been adopted by the budget committee.
2. BBI committee: the disability movement could have advocated for representation in the BBI task force team.
3. Housing agenda: the Kenyan disability movement could have demanded 15 % of the new housing schemes should be fully accessible.
4. Opportunity at the national employment authority: the Kenyan disability movement could have demanded a robust plan and execution of disability employment services targeting disabled persons.
5. Accessible toilets: the Kenyan disability movement could have emphasized at list enforcement of usage of accessible toilets in most government and private entities instead of the toilets being used us storage facilities.
6. Accessible bank notes: the Kenyan disability could have demanded the central bank to issue accessible bank notes instead of allowing the president to cheat the Blind persons like me as evidenced in June 1st, 2018.
7.
Organizational culture: the Kenyan disability movement should mirror itself and see if it’s being an enabler of inclusion or it’s a talk show entity.
This is to say Beyond just bringing diverse disabled people together, persistent initiatives, specific behaviours, and intentional practices that support inclusion are needed for tapping and invigorating the potential of diversity and for leading to disability inclusive organisational cultures.
Thus, having proper leadership commitment, accountability, and contextualization.
8. utilization of online and live streaming services during workshops and conferences: at this era of digitalization and the faster collection of both true and fake news the Kenyan disability movement could have had robust plans of ensuring combining the old way of board room meetings with technology in order to collect diverse views and opinions.
9. Identity registration: the Kenyan disability movement could collaborate with the interior ministry of the super CS Mating’I and ensure the disabled get the disabled card much faster just like the planned Identity card and passport issuance.
10. Bodaboda transport: 80 percent of disabled Kenyans are mostly likely to use bodaboda for accessing public places but the Knyan disability movement went mum as the interior ministry developed regulations. Obviously the bodaboda reforms will have adverse effects on the wanjikus with disabilities.
11. Secondary school transition: the Kenyan disability movement could have joined the ministry of education and campaigned for grater transition of learners with disabilities. Moreover, the disability movement could have pushed for the ministry to fund all student with disabilities joining form one.
Could the 4.811 students be learners with disabilities?
The views expressed here are for the author and do not represent any agency or organization.
Mugambi Paul is a public policy, diversity, inclusion and sustainability expert.

Will you Be my Valentine? “Tips for an extra special day with your blind partner” Author Mugambi Paul

Friendship, love, and romance are in the air with Valentine’s Day in Nairobi..

Whether you’re on your first date, or it’s your tenth with your true love, planning the right date night, getting the right flowers, a gift, dinner reservations,
etc can be a bit stressful.

And you may imagine that going on a first date with someone who is blind or visually impaired can even be more awkward.

But in reality, going on a date with someone who is blind or low vision is no different than dating any other person.

Here are a few tips for sighted companions or partners to help make your date memorable.

#1 Sighted Guide

Consent is key! Once you’ve selected a place, made a reservation or planned an activity, don’t forget to brush up on your sighted guide technique.

There is an etiquette to offering sighted guide assistance to a blind person. Always ask first, don’t grab or push.

Now a days I combine my White cane experience with Sunu Band
to navigate indoor spaces like restaurants and cafes. Moreover, it has aided me with the line like at theaters, so I know when it’s my turn to move up in the queue.

The Sunu Band is also great for when you are doing a sighted guide as the blind or low vision person being guided retains awareness and more control.

#2 Be descriptive

But not overly so – allow your partner the chance to soak in the ambiance.

Now that you’ve arrived at that fancy, romantic restaurant or place, offer a lite description of where you are to your partner.

Allow your blind partner the chance to ask about his/or her surroundings.

#3 Don’t just read the menu

make it conversation instead of reading a list.
You know Nairobi hotels and restaurant do not offer braille, or large print menus, you have to check with your partner their preference.

If those aren’t available, you can start by asking what are they’re in the mood for drink and food? If it’s a place you know well, make a recommendation
or mention the specialty of the house.

But whatever you do, don’t order or speak for your blind or low vision partner. Especially, don’t allow waiters or staff to ask you to speak for your blind
partner.

In the event it happens, tell your waiter to direct the question or comment to your partner.

#4 Table manners are still king

And throw away the messy stereotypes. Enjoying a meal with someone who is blind or low vision is just like eating or drinking with anyone else. Again being
a little bit more descriptive is good.

When the meal arrives, you may offer a quick description of where things are on the table. For example, your wine glass is to your left or at your 9 O’clock.
Sometimes using the clock reference is helpful.

Remember, don’t overdo it and stress about the vision impairment. Just be yourself and enjoy each other’s company through great conversation, drinks, and
food. At the end of the date, the most important thing is that you both have fun.

Additionally, everyday should be a valentine.
You should even practise self-love.
Self-love means allowing yourself to be happy. Too often, we manipulate ourselves instead of increasing the amount of joy we bring to our lives.

So, every day, do things that make you feel good. Even 10 minutes of self-care can add up and make you feel much better in the long run. But you’re worth
more than 10 minutes. You are the most crucial person in your life. Act, accordingly, show love, and be open to receive love.
All in all, do things that fulfill your soul. Get rid of people who don’t make you feel good.
What others say or think about you has nothing to do with reality. It’s just their perception.

Sure, we’d all like to be around people who are kind and loving, but the harsh reality is that rudeness exists. Yet, it doesn’t need to affect you and
especially not your wellbeing.

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 charity boss jailed after stealing from pension fund | Guest author Steven Morris

Patrick McLarry was guilty of ‘appalling dishonesty and a breach of trust’, the judge said. Photograph: Ben Mitchell/PA
Patrick McLarry was guilty of ‘appalling dishonesty and a breach of trust’, the judge said. Photograph: Ben Mitchell/PA
The former head of a charity has been jailed for five years after he admitted defrauding a pension scheme for workers with disabilities and using the money
to buy houses in England and France.

Patrick McLarry took more than £250,000 from the pension scheme of Yateley Industries for the Disabled and used it to buy homes for himself and his wife
and pay off a debt for a pub lease.

The charity was so badly affected by the sophisticated fraud that it came within days of closing and service users and staff have been left traumatised.

Sentencing him at Winchester crown court, the judge, Andrew Barnett, described the fraud as “an appalling dishonesty and breach of trust”.

He said: “You quite deliberately and in a very calculating way milked the fund of a considerable amount of money which was spent for your own needs and
your wife’s.”

Linda Matthews, the chief executive of the charity, said in a statement read to court that the pension scheme faced “significant difficulties” because
of the stolen funds and had led to “immense stress and anxiety” for staff and users.

Alex Stein, prosecuting, said McLarry carried out the fraud by setting up a new company to manage the pension fund, of which he was one of only two directors
and in the habit of authorising decisions.

He also set up a third company, which used the cover of trading in antiques to transfer the stolen money to France in order to buy two properties abroad
before creating a fictional loss to explain the missing funds. Stein said outside court: “This was a complex, sophisticated fraud undertaken over a number of years against vulnerable victims. Mr McLarry held himself
out as a pillar of the community, a legitimate businessman and a man with an MBE.

“It took a persistent and tenacious investigation to uncover one of the most substantial pension frauds prosecuted to date.”

Nicola Parish, the executive director of The
Pensions
Regulator, which brought the prosecution, said: “McLarry tried every trick in the book to hide his actions and squander the pension pots of those he was
responsible for but we were able to uncover the truth and bring him to justice.

“We will now work to seize assets from McLarry so that as much of the money as possible is returned to its rightful owners, who will rightly rely on it
to deliver their pensions in retirement.”

McLarry, from Bere Alston village near Plymouth in Devon, was also previously convicted of failing to disclose his bank statements to the regulator’s investigators.

McLarry’s wife, Sandra, 59, was initially charged with four counts of money laundering but at an earlier hearing the prosecution said it would not proceed
with the charges and offered no evidence. She was found not guilty.

Hampshire-based Yateley Industries has a onsite factory that trains and employs about 60 people with disabilities. It focuses on specialised packing, including
machine shrink-wrapping and boxing.

The work and pensions secretary, Therese Coffey, said: “Defrauding disabled people of their hard-earned pension savings is a despicable crime. I welcome
today’s sentence.

“This government will ensure that individuals who pocket people’s retirement funds feel the full force of the law. To protect savers further we are introducing
new laws, with a maximum jail term of seven years, for those who wilfully or recklessly endanger pensions.”

As 2020 begins… we should take great lessons and ensure we don’t enhance disability corruption.
For those who have been corrupt repent and repent time is coming when you will cry alone.
The friends and colleagues you have been eating with will no longer be with you.
Imagine the lives of the marginalized disabled persons you have ruined and denied them the opportunity to thrive or enjoy life just like you.

Crime,

“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.