EXPERTS OPINION ON DISABILITY BBI The following Memorandum has been authored by experts based on best practises in the globe. We shall demonstrate how to advance the rights of persons with disabilities based on human rights model.

The following Memorandum has been authored by experts based on best practises in the globe.  We shall demonstrate how to advance the rights of persons with disabilities based on human rights model.

This Memorandum Its also informed by the lived experiences and collection of views from persons with disabilities.

We therefore seek to offer our technical expertise.

Paul Mugambi is a public policy diversity Inclusion and sustainability expert while

DR Siyat is an independent disability consultant.

 

To the Joint Secretaries,

 Ambassador Martin Kimani, Mr. Paul Mwangi,

National Steering Committee on Implementation of BBI Taskforce, 

12th Floor, Kenyatta International Conference Centre.                               

 

Dear Sirs, 

RE: RESPONSE TO THE PUBLIC participation in matters of public interest.

 

Background

We believe the BBI final report will reflect the views of persons with disabilities.

Through most of the affirmative solutions suggested Kenyans with disabilities will feel more included than the current situation where Kenyans with disabilities are yet to enjoy the fruits of being Kenyan.

We believe we are enriching the 9-point agendas.

 

 

           recommendations:

  1. The current National Council for Persons with Disabilities whose mandate is to implement on rights, privileges, and protection is limited and we request for the establishment of a robust national disability service commission “NDSC” with the following mandate:
    • Inquiries on disability discrimination and rights violation among persons with disabilities.
    • Regulate and offer policy direction on matters disabilities.
    • Monitor and evaluate disability services.
    • Fund Disability Service Organisations and organizations of disabled persons to deliver disability services and products.
    • Establish a National Disability Advocacy Program under the CS Social Protection/CS Disability portfolio and fund advocacy targeted disability advocacy service organisations that have proper operational governance in the advocacy and linkage programmed “ALP.
    • Formulate policies on national disability service standards and national advocacy standards that provides guide to disability service organisations and disability advocacy organisations to audit their KPIs.
  1. The Government printers should have a unit assigned to produce information in alternative formats electronic braille, hard braille, audio, sign language and easy to read format as envisaged in the UNCRPD and constitution.
  2. All government public forms and information available online to be accessible to people with any disability.
  • Provide text-to-speech functionality to read a site’s content aloud and encourage the use of Assistive technology (AT) products developed with the intention of meeting the needs of people with disabilities.
  • Put in place guidelines to remove common barriers to web accessibility so as not to exclude people with any disability because the internet is used in government, health care, education, finance and other essential areas equally impacting on the lives of persons with disability.
  • The National government, the County Governments, public and private organizations to offer equal access and equal opportunity to people with disabilities, giving them the ability to actively participate in society.
  1. Establishment of braille authority which will regulate reading and writing of braille language certify braille instructors.
  2. At list 4 % of the national budget should be dedicated to the Kenya National Disability Service Commission.
  3. All county governments should have at list 3 % of their budget dedicated to disability services.
  4. All Counties should appoint CS with portfolio on disability.
  5. The national employment authority should establish a disability employment services department with the following mandate:
  • To be in charge of disability employment services of persons with disability to offer technical and vocational training to persons with disability to gain meaningful employment in both formal and informal sectors.
  • The disability employment service should research and recommend both public and private sectors who have met 10 % minimum employment for tax waver to the Kenya revenue authority.
  • Establish a real time database for persons with disabilities who are employed and none employed where employers can easily access and as envisaged in the national employment authority as they do for the youth.
  • Tax exemption should be provided to start-ups by persons with disabilities as a mechanism and strategy of enhancing their capacity for income generation just like the youth.

 

  1. Corruption is rampant and constitutes an existential threat to Kenya and her peoples.

Unfortunately, this does not exclude the disability sector.

In this regard it is undermining prosperity. That it is a bad example to the persons with disabilities. Corruption impacts disproportionally on Persons with disabilities. It diverts resources which would otherwise be used to enrich the wellbeing of Persons with disabilities in the social, political and economic development spheres.

  • The National anticorruption enforcing agency to establish an inquiry and investigate on disability related corruption and other malpractices with ultimate purpose to bring individuals and organisations that have fleeced or acquired wealth with disguise supporting persons with disabilities.
  • The assets authority should assist to recover the proceeds of disability corruption and this money recovered can be directed to the social protection programmes.

 

  1. Persons with disabilities should be given a chance to elect their own in parliament, member assembly with a clear legislative on the process.
  2. The 5 % progressive representation in both nominated and appointing authority should be increased to 10 % since even the population of the largest minority has highly increased. Some areas to have mandatory representation. at least one member of the national cabinet and County Executive Committees. At least one principle secretary at the national government, at least one chief county officer at the county level one commissioner in all commissions established in the country.
  3. The national construction authority should be mandated to actualize accessibility standards before authorizing new constructions of both public and private buildings and this should be replicated at all Counties.
  4. All disability peer support groups -The Kenya society for the blind, The Kenya Deaf Association, the Kenya Physical Disability Association etc. should receive direct support for the exchequer in order to ensure smooth running of their rehabilitation and peer support network.
  5. The Kenya National Bureau of statistics is mandated to conduct the National Census.

However, in the National Census exercise, the prevalence of persons with disability is not well captured by the Kenya Bureau of statistics on the state of affairs of persons with disabilities.

The National Census should include specific questions asking respondents whether they have difficulty functioning in their environment or experience activity limitations in the domains of communications, mobility, self-care or psychosocial disability.

This should be replicated in all government assessments/survey tools.

  1. The Kenya National commission on Human Rights should have a specific delegated disability discrimination commissioner as conferred in Article 27 (4) who shall operate under disability rights-based legislations to protect and promote the well-being of people with disability, including the rights to access social services, the right for training and employment and being free from discrimination based on their disability as outlined in articles 7, 21, 43 and 54 of the Kenyan constitution (2010).
  2. Many Kenyans care for someone with disability, an individual or child with medical condition, mental illness or someone who is frail due to age.

Households caring for persons with disabilities are faced with huge costs due to their care duties.

Subsequently, many Caregivers (parents/guardians/carers) are unable to fully engage in income-generating activities because of caring for someone with severe or Profound Disability.

We recommend that the National Government helps carers remain engaged in the community, participate in the workforce and stay healthy while continuing their caring role through the provision of funding to subsidize their efforts and contributions through the social protection net or provide other range of supports to help them manage their daily challenges, reduce stress and plan for their future.

 

  1. Creation of national public authority which will be in charge of public housing based at the ministry of housing transport and urban development.
  • At least 20% of the housing should be allocated to persons with disabilities
  • At least the 20% of housing should have the universal design meeting the international accessibility standards.

 

 

 

 

Why the Blind in Kenya should be categorized as “Severe disabled” Author Mugambi Paul

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

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

Australian Chief Minister Award winner

“excellence of making inclusion happen”

 

 

 

Several studies and literature have given definition of who should be severely disabled.

In the Kenyan context policy makers and stakeholders have arguably claimed that those under 24 hours care are supposedly entitled to this school of thought [Kenyan social protection strategy, cash transfer annual [.

Times have really changed. The current review being spearheaded by the social assistance programme by several development partners and the ministry of social protection should ensure the new social policy becomes more inclusive and in-depth.

 since I would like to make a case for the Blind.

Am not making this debate as a mere fact that myself am a blind person but with several scholarly arguments, observations and reasons base on Bing a public policy scholar and with lived disability experience.

To begin with social protection mechanisms which A Kenya has gradually been adapting have not been in compliant with the UNCRPD 2006, ILO standards, which Kenya adopted Kenya constitution article 27 on matters discrimination.

This is to say social protection is supposed to be inclusive for all.

The co values in chapter 10 need to be respected.

In other words, the new social policy needs to align itself with the current trends of inclusiveness and not living any one behind.

My second argument is based on the premises that most social protection programmed set aside for the defend sectors have not been Blind friendly at all.

For instance, since the start of the national youth service programme in 2013 no Blind persons has ever been admitted.

Du’a’’s we have Blind youth who can serve the nation?

Should the national youth service curriculum be revised to ensure Blind are recognized?

 

The proponents of this programme will argue that service men and women needed for this programme are supposed to use sight. Then where do the Blind youth go?

This affirms that Blind are more vulnerable and lack opportunities.

Additionally, the cash transfer programme has denied entry of individuals who are blind despite Poverty being a twin sister of blindness [world blind union 2004[.

Thirdly most job advertisements in Kenya have discriminatory practices of saying that people should have a driving license.

moreover, even most agencies both public and non-state actors who claim to thrust the gospel of inclusion also have joined the fray! Where and how does a blind Kenyan get driving license?

I am also eager to get one.

Organizations of persons with disabilties and self-advocates have been silent on this matter!

Fourthly several studies and media reports have confirmed that most beggars are blind persons. Where do you think the blind men and women who never got an opportunity to join higher institutions are?

Other than those who are hidden in their houses, you will obviously meet the blind beggars.

Apparently, The Kenya union of the Blind had a Sacco for this individual. Don’t you think its high time the beggar’s Sacco got a boost from financial partners?

Furthermore, the beggars have families who relight on them.

Academicians and researchers need to put their minds together and unravel the begging angle so us to enable the understanding of its social economic impacts in the society.

Fifthly, the largest group of blind persons are the beggars who have actually not gotten even basics of education, most do not have even access to white canes and most are also denied even to see the sunlight.

 

Never the less, after Citizen’ tv airing of the Begging story mid-year, a debate in the disability circle got underway but never provided a conclusive answer rather the argument centered on why persons with disabilities should not be associated with begging profession.

According to several media reports Nairobi, Mombasa, Meru and other counties have made several attempts to kick out the beggars in the vicinity but this seems to be a thorn in the flesh. Beggars keep on coming back. Some argue most are Tanzanians while others claim they are individuals who have not been served by the community.

Isn’t right time Kenya offering a permanent solution by providing social protection to the unemployed blind persons and recognize them as severely disabled?

The individuals, institutions who are currently tasked to represent the Blind need to rise up and author several policy statements to kick start   the voyage of empowerment of the blind.

All in all, blind persons in Kenya deserve to live in a respectable and dignified manner just like any other human being.

The White cane escapades. Guest author:

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

Dear stranger who passes me on the street,

I

It seems a little strange, addressing a letter to you, even though I haven’t walked alone anywhere in the past six months, but I am an eternal optimist

(a terrible flaw, I know), and hold hope that I will be able to do so someday again. At the outset, I would like to clarify one thing, regardless of whether

you are the-stranger-who-have-actually-passed-me-on-the-street or stranger-who-might-do-so-one-day.

 

Every

 White Cane Day

 till date, I have mostly written articles on the mechanics of using a white cane and how it works, or introspective essays on what the white cane means

to me (short answer: independence). This white cane day, however, I would like to remind you that, in order to have independent and enjoyable travel experience,

it is not enough to have or use a white cane merely.

 

The people I encounter while travelling and their attitudes also determine whether my travel is stress-free. I would like to now turn my attention to micro-aggressions

that are frequently directed toward me as I travel alone as a woman with a disability. Without further ado, here are some dos and don’ts for the passer-by.

 

First of all, let me tell you, it is absolutely inappropriate to stop me in the middle of the street and make comments such as “My sister’s son is blind

too! He is amazing!” or “I pray for people like you every day.” Don’t you realize I’ve got things to do and places to be, just like everyone else? Consider

it your lucky day if I don’t retort with “I meet hundreds of insensitive random strangers like you all the time. Shocking, Isn’t it?”

 

Secondly, it is equally inappropriate to grab me as I walk, without my express permission to guide me. If you really think I need help, the best thing

you can do is to ask me if I do (politely and calmly, now). Grabbing someone who is just walking around, and minding her own business, is completely unjustifiable.

Really, haven’t you heard anything about consent? Or is it that you don’t think it applies equally to a disabled body as a nondisabled one? You might have

good intentions, but how would I know that? You wouldn’t ever dream of grabbing a nondisabled woman in that way, would you?

 

Next, if you do ask me whether I need help, and the answer is no, walk away, even if your instinct urges you to push it. I am the one who decides if, when

and from whom to accept help, not you. Moreover, I am under no obligation to explain to you why I do not want your help. You asked, I answered, you walk

on—end of the story.

 

Now, if there comes a situation where you are going to guide me (regardless of whether you offered help or I asked for it), either offer me your elbow,

as people generally should when a sighted person guides a blind person, or take my non-cane hand. For me, since I am right-handed, my left hand would be

the one you are expected to take. Please, please please, do not hold my cane or lift it up from the ground.

 

The whole point of having a cane with me is that it will sweep the ground in front of me and alert me to obstacles in my way. I need it, whether or not

you are guiding me. Don’t force me to engage in a tug of war with you in the middle of the street, with you on one end of the cane, and me on the other.

It is highly undignified.

 

Next, the brief moments in which you help me from one side of the street to the other, are not exactly the right ones to ask questions about blindness

in general or me in particular. Like I mentioned before, things to do and places to be. General questions such as how I use my phone, how blind people

travel, etc., are best addressed to Google. After all, you Google everything else, so why not this?

 

Answers to specific questions such as how I became blind, whether I was born blind or became blind, etc., are part of my personal story, which I am under

no obligation to share in the middle of the busiest 80 ft Road. Essentially, what I am trying to say, is that I do not live for the express purpose of

teaching you what blind people can do, or how we do things.

 

An offer of help shouldn’t come with an expectation that I will answer your questions in return. I realize that this is perhaps the first time you are

ever meeting or talking to a blind person, but you might not be the first or even fifth person I would have met over the course of that day to ask me these

questions, and it can get old really soon.

 

Next, it is also not your place to make comments such as “people like you should stay at home.” Or, my favorite “Where are your parents?” As I am an adult

travelling by herself, these questions are not necessary, to say the least, and are better kept to yourself. Don’t force me to reply with “none of your

business!”

 

Finally, if you are a person with strong religious beliefs, specifically about a cure, please do not stop me and tell me to pray to so-and-so deity, perform

so-and-so poojas, or read so-and-so portions of the bible. The fact that you think all disabled people need to be cured is in itself highly ableist.

 

Therefore, don’t blame me if I, equally politely, ask you to read up on ableism and the very contentious issue of cure. Same goes for those people who

believe in certain doctors, alternative medicines, or any other cure. I am not a broken doll that needs to be fixed. I am a person who celebrates her blind

body and all that it entails. And of course, it goes without saying that the middle of the street is certainly not the place to be debating these things.

 

The above is not an exhaustive list of the types of micro-aggressions I encounter, but merely the most annoying ones. This White Cane Day, I urge you to

keep these in mind and cooperate with the disabled community, as we try to create less stressful travel experiences for all.

Why 13th October 2020 will be “the Kenyan Disability Historical moment” “Who will be the Disability BOSS?” Author Mugambi Paul

Author Mugambi Paul

 

 

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

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

Australian Chief Minister Award winner

“excellence of making inclusion happen”

 

 

there is a growing need to ensure those most

vulnerable are not left behind in public participation [2019 constitution, uncrpd 2006 and SDG 2015].

 In particular, the Kenyan census 2019 indicate there are 2.2 % Kenyans who have disabilities.

Never the less, this data is highly disputed by both policy makers and Kenyans with disabilities.

 

For many and varied reasons, Kenyans with disabilities are highly

vulnerable and continue to face multifaceted modes of discrimination.

Additionally, Covid 2019 has even made the situation worse.

for instance, during this pandemic for one, Kenyans with disabilities are more

likely to experience pre-existing health conditions that put them at a higher risk

of illness and death due to COVID-19. They are also more likely to fall in to cracks within the

category of low-income earners, this is affirmed by the deplorable living conditions most have lived to experience.

Most studies have shown that Kenyans with disabilities are often excluded from receiving public services and cannot even afford the basic social services.

This is also disproportionately triggered by the existence of multidimensional factors

Who will spearhead the much-needed transformation?

Who will offer social justice to the 45th Tribe of Kenyans? will Kenya have a disability strategy?

 

 

Historically, 13th October will remain the defining moment in Kenya. Out of 58 applicants for the position of executive director only 8 made to the top after the closure on September 7th 2020.

The Kenyan disability space is highly expectant.

Disability desegregated Data analysis:

According to my data analysis persons with disabilities who made their applications showed 63.5 % out of the 58 were persons with disabilities.

25 were persons with physical disabilities.

7 were person with visual disabilities.

3 were deaf persons

One person had albinism

Out of 88 16 were females.

We were not able to ascertain persons with psychosocial or intellectual impairments

Personal tribute:

I also take this chance to congratulate the youthful Richard, Wanja and Mercy for representing our generation.

You shall live to fight another day.

What do Kenyans with disabilities want?

As a public policy diversity and inclusion expert I have persistently said Kenyan needs to actually adapt simple, simless, and tested strategies which do not actually require much resources but administratively can change lives of Kenyans with disabilities.

For example, ensuring adaptation of the human right model approach on disabilities since I believe Kenyans with disabilities have rights not just needs.

Secondly exterminate the medical model of assessing persons with disability and adapt assessment based on functional capabilities and ensure decentralization of the registration process.

Thirdly, Slacken disability mainstreaming and job placements.

This will be the beginning of real transformation to the lives of Kenyans with disabilities.

Moreover, Being and indigenous rural based think tank I believe this will ensure enhanced access of public services to all persons with disabilities.

I believe the greater engagement with organization of persons with disabilities, self-advocates will be of paramount.

Will the next disability boss reduce the 12 crimes of being disabled in Kenya?

Check out March 18th 2019 blog:

Twelve Crimes of being disabled in Kenya Author: Paul M. Mugambi.

Who will be the 4th NCPWD boss?

 

The 8 persons who made to the date with destiny day are as follows:

 

 

entitPaul Leringato, HSC

  1. Wisdom Kazungu Mwamburi
  2. Joywin Chepkemoi Sang
  3. Peter Sibale Musakhi
  4. Patrick Mumo Muinde
  5. James Kariuki Ndwiga
  6. Harun Maalim Hassan
  7. Simon Nyamola Owawa

 

Conclusion:

All in all, this will be a new chapter for transforming a new Kenyan disability strategy full of aspirations, actualizing dreams of many Kenyans with disabilities and expanding the Kenyan national cake to the largest minority of Kenyans.

Will persons with disabilities start to live their lives based on the individual autonomy and choices they make?

May the best man or woman serve the sector.

 

Why Covid-2019 should not slam doors of disability evolution! “Corona don’t live us behind!” Author Mugambi Paul

he opinions expressed here are for the author and do not represent any agency or organization.

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

Australian Chief Minister Award winner

“excellence of making inclusion happen”

 

 

 

 

The COVID-19 pandemic, in the first half-year of its existence, has impacted the lives of most people on Earth in one way or another. It is the first truly global pandemic in modern times and each of us has been forced to grapple with its effects, both individually and collectively.  persons with disabilities around the world continue to be disproportionately affected and feel the heat.

 With this notwithstanding, the negative societal effects COVID-19 has wrought is written all over the world, in many cases, been even more profound when viewed through the lens of persons with disabilities and these impacts have been aggravated even further in countries dealing with humanitarian crisis.

Furthermore, Persons with disabilities living in humanitarian set ups already deal with increased health challenges, exacerbated threats to their security, and societal marginalization that negatively impacts nearly every facet of their lives. In some cases, that marginalization comes from misconceptions that disability is somehow contagious and should be shunned; more frequently, though, it is the result of the broad assumption that persons with disabilities must be cared for and kept in restrictive environments for their “protection” — robbing them of basic dignity and the fundamental opportunity to explore and realize their personal potential. Though disability inclusion efforts have started to gain global momentum in recent years in several countries in which the international NGOS and local partners work.

 now with the current new trends of the Covid pandemic and its attendant social restrictions — persons with disabilities in these fragile contexts are at risk of being pushed even further to the periphery of their communities, potentially negating any progress that had been made.

In other words, I opine persons with disabilties can’t experience the ne norm since Corona has even worsen the situation.

Despite being a population that is particularly-risk prone to COVID-19, persons with disabilities face even greater inequalities in accessing basic services including healthcare, education, employment and social protection during the pandemic. This could erode all the positive developments that the world has recorded in achieving the Sustainable Development Goals

While there are certainly very legitimate Covid-related health concerns specific to persons with disabilities affect the immune system, lung function or other related factors that can put them at higher risk for serious complications.

Additionally, the lack of latest data statistics also contributes to the poor outcomes on planning and service delivery to both development and humanitarian sectors.

More over most of the service delivery tend to focus on one particular disability and thus marginalization of the marginalized.

For instance, most of the time persons with psychosocial and intellectual impaired are not considered in different activities.

In accessing information its also highly pronounced among the Blind, Deaf blind etc.

 – perhaps the bigger, less personally-controllable risks they face are related to the very seclusion from which they have spent so many years trying to break free. Just as they have begun to find the first tiny openings in their ability to access education or gain regular employment or even play sports, the isolation necessitated by the pandemic threatens to slam those doors closed once again. The real danger, though, is that the doors will remain closed even after the pandemic is under control because its imminent threat will have caused societies already reeling from the instability of war and conflict to forget about prioritizing the inclusion of persons with disabilities and building into their culture.

As a public policy diversity and inclusion expert I take note of for persons with disabilities, the ability to achieve economic security and independence has very often been a goal kept out of reach by a variety of societal assumptions about their ability – or inability – to reliably fulfill professional requirements, their perceived increased rate of health-related absences or a host of other preconceptions. Now, just as these misconceptions are starting to be proven wrong by persons with disabilities more often entering the work forces in many countries, the economic impact of the pandemic on the global and local economies could be devastating for their collective progress.

The sustainable development goal theme of not living any one behind might become a mirage if nations don’t take necessary measures to caution men, boys, girls and women with disabilties.

I affirm what is necessary to stop this temporary barrier from becoming a long-term regression is the commitment from all sections of society – governments, employers, educational institutions, healthcare providers, among others – in countries all over the world to continue prioritizing disability inclusion efforts. This is not only essential to create opportunities for persons with disabilities, but it will also benefit societies, economies, business, etc., by bringing the vast potential of a population estimated at over 1 billion people into the fold. Many studies have shown that companies and organizations that prioritize hiring persons with disabilities have a positive impact on profits and better corporate culture. For example, U.S. companies that excel at disability employment and inclusion are four times more likely to deliver higher shareholder returns than their competitors, according to a 2018 study by Accenture.

 

only way real change will happen is if they are supported by the commitment of the broader societies in which they work.

Disability inclusion will survive the coronavirus pandemic only if everyone believes it is a necessary social evolution and acts accordingly to support its growth. If this can happen, not only will people with disabilities transcend the societal impacts of COVID-19, but the communities, businesses, universities and organizations that push for their inclusion will grow and improve as well.

 

Shielding rights of persons with disabilities Author Mugambi Paul

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

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

Australian Chief Minister Award winner

“excellence of making inclusion happen”

 

 

The COVID-19 pandemic has turned our everyday lives upside down. Recently, its impact on persons with disabilities has been felt in almost all spheres of life.

More barriers on inclusion have been identified by different studies by by individuals with disabilities, organizations of persons with disabilities, governments and also other stakeholders.

For many reasons, people with disabilities are among the groups most at risk in this pandemic. Their often compromised health status means they have a high risk of adverse outcomes if they get the virus; their need for personal care and support with everyday living makes it more difficult to take effective precautions such as social distancing; and, the well-documented inability of health systems to respond adequately to people with disabilities means health services will struggle to provide them with quality care during the pandemic.

People with intellectual disabilities in particular will find it difficult to understand what is happening during this time and are very susceptible to isolation and loneliness. For some, the restrictions on visitors to family or group homes, and limited access or support to use online technology, have meant little or no contact with friends and family for months.

The same story is affecting blind and vision impaired persons. Not even many are aware the proper wearing of masks. Most adverts are too visual thus rendering communication barrier.

 

Needless to say, the role of health services in Kenya is by the county governments.

This has seen had failed to quickly recognize and respond to the greater risks of COVID-19 on people with disabilities, leaving this community disproportionately affected by the pandemic. Early emergency plans focused on older people. In Kenya we are yet to see disability specific pans or even outlined measures by both national and county governments on disability corona response.

Additionally, in other jurisdiction we have seen development of disability advisory committees which is quite important in ensuring article 4 of the UNCRPd is implemented.

We hope soon we can have a disability telephone help line dedicated towards addressing the challenges.

Some silver lining has been seen in some nations on the reopening up of economies by provision of disability inclusive plans and actions.

Will African countries follow same way or we shall ensure protection of rights of persons with disabilities ins not achieved?

 

 

 

Why we must dismantle social ableism Author Mugambi paul.

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

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

Australian Chief Minister Award winner

“excellence of making inclusion happen”

 

 

As COVID-19 has drastically changed the way we live and relate to one another, Kenyans with disabilities like me have been living in fear, not just of the virus, but of community attitudes to our lives and existence. The pandemic has brought to the forefront deeply ableist ideas held by our society that see disabled lives as disposable. Our lives are not worth living, and are not worthy of the same care and protection. Our deaths do not carry with them the same grief and sorrow that abled deaths do. We are casualties that must be accepted for the greater good of our economy.

This discourse has dangerously manifested in our hospitals, shaping COVID-19 triaging policies and the way medical professionals treat persons with disabilities– with or without the virus.

Globally, its evidently clear some nations they have   disregard for lives of persons with disabilities.

People with disability have been identified as particularly “vulnerable” to this potentially deadly illness. If only we all had the freedom to decide who, and how many people, we have contact with in our own homes.

.

For instance, president of South African President Cyril Ramaphosa has expressed sadness over the death of Nathaniel Julius, a teenager with Down syndrome, during a police operation.

 

I have been continually shocked and angered by triaging guidelines that override shared decision-making processes, fail to acknowledge disproportionate rates of disability amongst already oppressed communities – such as rural and slum dwellers.

I affirm due to the changing times I have had from senior leaders, journalists, business persons who believe we should position life to normalcy.

It’s okay – COVID only really kills old and disabled people. If you’re young, you’re strong and healthy and won’t be at risk. The people who die from COVID don’t really have a quality of life anyway. We really do need to open up the economy for the rest of us. With resources so scarce and hospitals overwhelmed we need to priorities those of us who would actually survive.

 

 

For many persons with disabilities, hospitals are already traumatic places where we are spoken over, invalidated and dehumanized. Frequently they are places that deprive us of care, brutalize our bodies and result in our death. How do we begin to confront the even more explicit violence in our healthcare system COVID has triggered? When I think about the not-so-distant future, and try to imagine how our disability community is coping, I am filled with anguish thinking of the scars these triaging narratives will leave. I think of the trauma being resurfaced for hundreds of thousands of disabled people who have already suffered mistreatment at the hands of healthcare systems, and I think of those persons with disabilities who would’ve survived COVID, had things been different. I vow to remember them and keep working towards a world grounded in disability justice, where no one is disposable and we can receive the care that we need. As Mpofunamba1 articulates in one of the music track attitudinal barriers do exist where women with disabilties are even questioned which animal impregnated you. As f women with disabilities are not supposed to enjoy sex and give birth. Several studies have shown increase of gender-based violence against persons with disabilities.

Based on a biased understanding of appearance, functioning and behavior, many consider disability a misfortune that make life not worth living. To promote the rights and dignity of persons with disabilities, we must dismantle social ableism and embrace disability as a positive aspect of the human experience.

The world’s population is ageing. By 2050, people over the age of 60 are expected to account for 21 per cent of the global population. About half of them will live with a disability, making this the largest community of persons with disabilities—and one of the most stigmatized and neglected.

The deprivation of liberty on the basis of disability is a human rights violation on a massive global scale. As Mpofunamba1 I say it is not a “necessary evil” but a consequence of the failure of States to ensure their obligations towards persons with disabilities.

 

 

 

Parents, You Matter!” Guest author Alison

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

 

I have been thinking hard about how important a parent is in the life of a special needs child…

It’s been a while since I wrote anything about autism. It’s been a crazy season – being home, working from home, and helping the kids with their schoolwork, etc. There is something I have learnt during this season, though. Parents are very important. Parents matter. Parents are special people.

Parents, let me encourage you today.

You know your child better than anyone else

Picture this. You take your child for a therapy session, and they are crying all through. The therapist tells you that things will get better with time, but at the next session, things are the same. You try a few more sessions, and nothing changes. Then you start to notice that your child cries every time you are leaving for the therapist’s clinic, or every time the therapist is just about to get to your house for a session. At this point, you, as the parent, make an executive decision and stop the sessions. Why? Because you know your child best.

I have been there. I have had to make this decision several times. Initially, I felt that I should have tried just one more time, then I realized that it was up to me to make sure that my child was happy and at peace. Nobody else could have done it for me.

You communicate best with your child

Maybe your child is not yet speaking. Maybe you are longing to hear that first word. Can you tell, however, when your child is sad? Can you tell when he or she wants to have a meal or go to the bathroom? Most likely you can, especially when nobody else can tell what your child is trying to communicate.

How does this help? Imagine you go for a therapy session, and the therapist asks your child to do something. Your little one does not respond, and the therapist is stuck. You then offer to try and talk to your child, explaining the instructions. He or she quickly responds by doing what the therapist has asked. Do you see what I mean? Parents always know how to communicate with their kids.

Parents, don’t beat yourself up just because your child is not speaking. There are other ways that kids can communicate like sign language, using technology, writing, using pictures, etc. Find the best way to communicate with your child.

You want to help your child out of love

Nobody wants your child to acquire skills as much as you do. Nobody understands how important it is for your child to be independent like you do. Your love for your child is what drives you to hire therapists, follow the home program, buy equipment, etc.

You may, however, find that the people you hire to help your child are doing it for the money. Others may be doing their job just because it is a job, not because they love working with your child. The bottom line is, your love for your child is what will drive you to keep going, to keep learning, to keep training, and to keep waiting patiently for a skill to be mastered.

I just want to encourage a parent here. The world will not always accept our children for who they are. It is up to us to show them how to love children who are abled differently, and to show them that being different is not a bad thing. Also, surround yourself with like-minded people, people who will support you on your parenting journey, people who will love and accept your child just as they are, and people who may even offer to watch your child while you catch a breather!

You are your child’s greatest resource

Parents, you are your child’s greatest resource. You provide them with love and care. You make sure their environment is conducive to learning. You purchase all that they need for therapy, school, etc. You feed them and clothe them. You teach them the things that only a parent can. You pay for therapy sessions and school. Parents, you rock!

In this season when accessing services is hard, I believe that parents can still do something with their children. What have seen your therapist do that you can do at home? Find out what activities your child can do to improve in areas in which he or she has challenges. For example, if your therapist has mentioned fine motor skills in the past, look for videos with fine motor activities you can do at home. Also, for those who are doing teletherapy, it’s important to remember that a good session works best when you are there to help with setup, resources, etc. You can also opt to get a therapist to come up with a good home program for your child which you will implement.

See how important you are, dear parents?

One last thing, though. You need to recharge from time to time otherwise you will burn out. Find a way to catch a break whenever possible. You need it.

 

How Do Disabled People Feel About Discussing Their Disabilities? Guest author A Pulrang

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

 

 

 

For people with disabilities, talking about our disabilities is complicated.

Sometimes, when people ask their perennial questions, or just look at us in a certain way, we can almost hear them say it:

“Go on! Do that thing you do, where you remind me how my own little problems aren’t so bad. Do that ‘inspiration’ thing that makes me feel better about myself for admiring you.”

What does it mean when a wheelchair user speaks at a political convention? What does it mean when a blind person gives a motivational speech, when an amputee engages students or employees on “disability awareness?” What does it mean when any disabled person, in the ordinary course of their day, is asked to explain their disability, or tell their disability “story?” And what does it mean when the disabled person tells their story? And what does it mean when they say, “No, not today. Not here. Not for you. I’m not here to be your inspiration.”

From a non-disabled point of view, it must sometimes seem like we disabled people can’t make up our minds. That’s because the whole subject is fraught with conflicting choices, each with pluses, minuses, and even moral implications.

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Do we raise awareness, or mind our own business? Do we welcome questions from the curious, or draw clear boundaries to guard our privacy. If we want a better world for disabled people, what is our own obligation to further that goal? Will we share our most profound experiences and thoughts about disability, and for what purpose — or whose?

Some of us are quite anxious to tell our stories to anyone who will listen. It can make us feel less alone with our burdens and traumas. Some of us draw strength and purpose from telling our stories of triumph over adversity, dispelling myths about disability, or advocating for better disability policies and political power for disabled people. Despite popular rhetoric about “not letting disability define us,” a great many of disabled people do organize much of our lives around our disability experiences and identity, and we do it intentionally, joyfully.

PROMOTED

At the same time, disabled people have mixed feelings about sharing our experiences with others. We all have different ideas about the pros and cons of sharing our stories, raising awareness, and “educating” non-disabled people about disability. And what we think about it can change from day to day, from person to person, and situation to situation.

To understand how disabled people struggle with these questions of sharing, educating, advocating, you need to explore some of the positives and negatives we juggle every day.

Positives

First, some disabled people find sharing their disability stories therapeutic. Many who were disabled later in life need to tell how they became disabled. And talking about our disabilities and everyday struggles with ableism can help all of us clarify how we feel about our disabilities.

While few of us like to admit it, many of us do in fact crave sympathy or at least empathy. Getting a positive, supportive response to our disability stories can be validating. It can, at least in the short term, compensate for some of the negativity and unvarnished prejudice we encounter regularly. And genuine empathy can actually make our lives easier by reducing misunderstandings and judgment.

There is also the practical benefit, or necessity, of sharing something about our disabilities in order to get help and accommodations that we need to survive, and that can help level the playing field for our ambitions. Having to reveal private information in order to obtain equal opportunity is a constant burr in our sides. But it is the most consistently beneficial payoff for this awkward exchange.

Finally, some of us choose to embrace being spokespeople of sorts for the disability community, and the cause of disability rights and justice. Some disabled people commit themselves to advocacy, motivational speaking, writing, and educating the public … all of which call for some degree or another of personal sharing. These commitments can give purpose to a disabled person’s life, if purpose is missing or uncertain. It can give meaning to a person’s disability, if meaning is important to them. For some of us, it’s also a living, and a potentially useful one.

The benefits available to disabled people for sharing our stories, experiences, and feelings are fairly familiar. It’s the negatives people tend to forget, but that are constantly on disabled people’s minds, precisely because they are so common and cut so deep so often.

Negatives

For a start, constantly retelling our disability stories can be a seductive trap. We tell it again and again, sometimes on request, or else in search of some resolution that never comes. We stagnate or worse, spiral further into depression and trauma. Also, other people’s curiosity about disability and disabled people’s stories tends to have a very short shelf-life. While they start out craving answers and compelling narratives, most people quickly get sick of them, especially if they fail to fascinate or uplift. Regardless, fixation on our own personal stories also makes it less likely that we will discover the broader disability community and disability issues, and that is a real loss.

Another problem is that many of us quickly come to realize how easily the visibility we craved for so long, and we finally seem to be getting, can be misused, no matter how carefully we craft our messages. As any disabled person who has addressed a political audience can attest, you never know just how much of your specific message gets through, and how much is drowned in a sea of sentimental responses to our very presence. Do audiences come away with a new understanding of health care, or home care, or accessibility? Or do they leave uplifted or amazed at how articulate the disabled speaker was, and how brave?

The most important thing to remember, but so many people miss, is that sharing our stories and educating people about disability always costs us something. The novelty of attention and praise eventually wears off, and you find yourself giving and giving, with little in return. Even if you are being paid … and far too many disabled public figures aren’t paid for what they give … sharing yourself, your passion, and your hopes with strangers takes a toll. And even the best audiences have little ability to give back.

Yet, disabled people are often expected to share our stories and enlighten others on disability matters … as if it’s our unique duty and special mission in life as people with disabilities. A calling is a personal choice. A duty is more of an imposition. A lot of people don’t understand the difference. On the personal level, friendly curiosity about our disabilities can quickly turn to sour resentment when we don’t immediately satisfy it. And demanding to be “educated” is often used as a “put up or shut up” answer to being called out for accessibility failures or other kinds of ableism. If we don’t agree to open ourselves up at all times and give free education, then ongoing ableism is implied to be our fault.

So, when is it okay, and when is it inappropriate to ask disabled people for their stories, or for help on disability issues?

Situations

Obviously, it depends partly on what kind of relationship you have with the disabled person. It’s rarely if ever appropriate to ask a disabled person you don’t know to tell their story, or explain intricacies of the disability experience to you. Asking a coworker or casual acquaintance may be alright, if you do it with care and listen for signs of receptiveness or reticence. You can deepen your relationship with family or close friends with disabilities, by inviting them to share deeper experiences and feelings. But this kind of closeness should never be mistaken for open-ended permission. Having a family or professional connection to disability isn’t a special permit to pry. Neither is having a disability yourself. A disabled person may trust you more if you’re disabled too,, but your disability status doesn’t guarantee access.

It also depends on the time and setting. Certain subjects and avenues of conversation are appropriate in some places and occasions, out of place in others, and totally bizarre or even creepy in still others. Think of how doctors and lawyers feel when people at cocktail parties ask them for medical or legal advice. It’s often like that for disabled people. We feel like everyone’s public encyclopedia of all things disability. No place is taboo, no subject off limits. At any moment, we can be prayed over in the frozen foods aisle, asked in a coffee shop how we have sex, or grilled in the lunchroom on which disability terminology we use.

If you want to engage with disabled people, and learn about disability issues and culture, that’s great! Please do both. But remember that each disabled person is an individual, and we each make our own decisions, using our own criteria, for when and how we want to share, explain, and educate others, from perfect strangers to those closest to us.

In the end, sorting the good from the bad, the appropriate from the burdensome, isn’t that complicated after all. It’s a bit like intimacy and consent. Talking about disability with disabled people can be enormously rewarding for both parties, but only when the disabled person is a willing participant. While some of us consciously choose to be as open and forthcoming as possible, none of us feels that way all of the time.

Above all, no disabled person should ever feel obligated to share, or shamed for not sharing. this is also my school of philosophy . as a Public policy diversity and inclusion expert I celebrate diversity in full.

Dream of Corona from a Disability lense Author Mugambi Paul

With the recent occurrence and high prevalence rate of Covid 2019 in Kenya having recorded over 32 thousand cases in August 22nd.

I wish to retaliate what front line soldiers and policy makers need to put in place to ensure those individuals with disabilities and those who are acquiring a disability in this period are well taken care of and granted the best of serf=vices.

 

The Kenyan health workers should

  • Know about people’s rights
  • Protect people’s rights

People should get the health care they need during coronavirus.

Convention on the Rights of Persons with Disabilities is a law that protects the rights of people with disability around the world.

The Convention is called the CRPD for short.

The CRPD says discrimination is never ok. CRPD says people with disability

  • Have the same rights as other people
  • Must be respected

The CRPD says people with disability have the right to

  • Be included in their community
  • Make their own decisions and

During a pandemic some rights are very important.

  • The right to life
  • Good health and health care
  • Information like Easy Read.
  • People with disabilities deserve to get treatment and medication just like other persons.

People with disability have the right to make choices about their health.

This includes having support to make choices. Supports include

  • Aids like a cane or wheelchair
  • Support workers or family

Communication:

People disability have the right to communicate how they choose.

  • Kenyan sign language
  • Braille
  • Easy Read

Plain language.

Last to be served last one to eat: Author Mugambi paul

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

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

Australian Chief Minister Award winner

“excellence of making inclusion happen”

Globally, Evidence is emerging that persons with disabilities are being disproportionately affected by the Coronavirus pandemic and emergency policy measures being undertaken are not enough.

This is to say the marginalization that existed before covid is still being multiplied and increased due to lack of inclusive disability response starting from the world health organization and the governments.

 

The COVID-19 crisis is taking a grim toll on human lives across the globe. Although the complete impact is yet to be fully comprehended. The coronavirus pandemic has changed almost every aspect of normal life, from grocery shopping to work, from exercising to socialising. While the changes, brought on by fear of infection and the state-mandated quarantine –– which has been in place in Kenya since March 20 –– are difficult and inconvenient for everyone, for those living with disabilities across Kenya, the virus crisis has posed a unique threat to their ability to access basic healthcare, education and to their own individual autonomy. 

 the risk the pandemic

is exposing for gains made towards the Sustainable Development Goals (SDGs) is becoming evident. What this global emergency is also revealing, is that

these 17 goals are, in fact, our best option to recover better and to overcome similar crises in the future.  

Policy statements need to manifest in concrete action.

In other words, inclusion and empowerment of persons with disabilities is essential to ensuring that persons with disabilities are not left behind.

 

 

 As governments rush to respond to the virus, it is more critical than ever to guarantee that measures taken are fully inclusive.

 

 

of persons with disabilities and prevent human rights violations from taking place. More importantly several studies from the UN body, research institutions, disability sector, individual testimonies and government have shown no disability desegregated data has been recorded up to date. Disability is prevalent throughout Kenyan society, though that prevalence isn’t always represented in policy-making. No less than 15. 10 percent of the population of Kenya lives with a permanent difficulty or limitation, according to organization of persons with disabilities data.

 Additionally, disability is present in 2.2 percent of Kenyan households, according to official data of KBs 2019 census. 

 

 

As a public policy scholar am yet to understand why governments are able to give geographical location, gender age and not disability desegregated data !

Is this not a form of exclusion?

At least 70,000 Americans with disabilities have died in the last 120 days without being on the radar. Those in nursing homes are referred to as ‘elderly,’

with ‘underlying conditions,’ or ‘vulnerable.’ These are euphemisms that avoid using the word “disability”. This diminishes and ignores civil rights protections

for millions.

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Policy makers need to realize that when persons with disabilities are not being counted, they are being locked out of interventions.

The distribution of the cake needs to be served in an inclusive manner.

 

For many countries in Africa they have formed emergency response committees with uyt representation of persons with disabilities.

Should disability persons organization publish experts with disabilties since governments have failed to ensure representation?

Persons with disabilities in low income countries face substantial challenges in terms of achieving self-representation,[1] inclusive employment[2] and integrated education.[3] The Convention on the Rights of Persons with Disabilities (CRPD)[4] outlines a framework for the inclusion and self-advocacy of persons with disabilities, while the Sustainable Development Goals (SDGs) commit to ensure that global development processes are disability inclusive.

 

 

 

Moreover, several general protocols have been made but without any reference on how interventions will be carried out for persons with disabilities.

Additionally, after 4 months of COVID  2019 several countries have started to some sort of disability protocols, of which they contain minor concerns of persons with impairments.

 

Its only south Africa who have made major attempt of having disability inclusive response protocols and interventions.

Obviously, this is a step in the right direction but more needs to be done to ensure no one is left behind.

Likewise, in other countries like in Kenya having sign language interpretor on the TV screen during the Corona state address seem to be an already concluded assumption that they have addressed the communication and inaccessible information gaps.

Does this mean that all persons with disabilities have accessed the information?

the Kenyan social protection policies seem to be driven ‘smoothing

out’ variations in incomes over the lifecycle, I argue  that ‘the dominant effect

of social spending in the Kenya is to redistribute income across people’s own life. For example the recently launched “Kazi kwa mtaa programme”

aids citizens to pay taxes of what they have.

 

The policy brief offers 4 recommendations on how governments can best mitigate the economic fallout of the COVID-19 crisis and protect informal workers:

list of 4 items

  • Continuing emergency income support for workers and businesses operating in the informal economy 
  • Reforming social-assistance schemes to extend beyond the poor—both horizontally and vertically—to ensure that the “missing middle” will have access to

them

  • Ensuring that social-assistance measures are a part of a larger relief package and include loan repayments, rent and utilities payments, and tax breaks

on essential goods

  • Safeguarding women’s access to these benefits

list end

On the other hand, In the book Good Times, Bad Times challenges popular misconceptions about the welfare state

. The book deconstructs the view that ‘welfare’ is exclusively

about out-of-work benefits and that those who are in receipt of such benefits are

somehow ‘other’ to the rest of ‘working Britain’ (a term favored by our current

political leaders). Hills challenges these misconceptions with detailed evidence

demonstrating that in fact we all benefit from the welfare state over the life-course,

getting back what we put into the system. The welfare system in Kenya and most African countries

covers universal entitlements such as education, health care, pension provision, and

youth protection except for the very wealthy), and as such it is something that all of us

make use of at varying points in our lives: when we have children; when we become

unwell; when we need healthcare; and when we grow old.

Hills explains that whilst the welfare system is redistributive (poorer households

do get more out of the system and richer households put more in), the system is

also redistributive for individuals over the span of their own lives – so effectively

he argues that we are all paying for own services and benefits in a kind of ‘savings

bank’ (67). This is the case for all families, with even the poorest 10th of the population

paying in half of what they take out. The rich contribute more because of

the principles that the system was founded on: that benefits and services should go

to people according to their need (as opposed to whether they can pay for it); and

that the taxes we pay should be in proportion to our incomes.

 

In the COVID-19 pandemic, persons with disabilities may face heightened risks, such as increased exposure rates, due to numerous barriers in the humanitarian response. For example, barriers in accessing life-saving information, protective measures and other essential humanitarian services on an equal basis with others. Gaps in the preparedness and response plans increase these risks even further. 

As we hurtle towards the 2030 Sustainable Development Goals deadline, governments are accelerating investments in both social protection and disability and gender equality. This presents

an opportunity to gain a deeper understanding of how social protection can not only reduce poverty, but also contribute to disability mainstreaming. Disability mainstreaming is

vital to achieve sustainable poverty reduction through social protection. In turn, poverty reduction, for instance, through greater income equality and

security provided through well-designed social protection promotes disability inclusion.  

Social protection, particularly in the form of cash benefits, has already proven its ability to 

address multi-dimensional and intergenerational poverty for persons with disabilities of particular are men, boys, women and girls with disabilities

 in different contexts, including increasing women’s savings and investments in productive assets or improving girls’ school enrolment and attendance. Yet, this

potential can also be belied if programmes are poorly designed or executed, resulting in further entrenching prevailing gender inequalities. More needs

to be done to understand how and why programme design and implementation can either strengthen or worsen impacts for women and girls.  

  1. All means all! we cannot have proper digital inclusion if we leave people behind;
  2. We need stronger connections between schools, families and students because connections lead to commitment

list end

 

       

What lessons can African nations learn?

We need to activate disability emergency mode when the glbe is doingit not just to react after the race has already kicked off.

We may have lost many persons with disabilties either through hunger, loneliness, lack of health services, covid itself and other preexisting conditions.

Organizations of persons with disabilities need to ensure duty bearers accountable to them and if need be seeking legal address. For instance. 

Over 1,000 web accessibility lawsuits have been filed in 2018.

Companies like Nike and Amazon are being sued for failing to make their content accessible to deaf, hard of hearing, blind, and low vision users.

       

Conclusion:               

Covid19 has created new societal challenges and exacerbated existing ones however plethis is also an opportunity to rebuild our society in a more equitable

Corona 2019 why did you’ve it imprison the blind? Author Mugambi paul

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

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

Australian Chief Minister Award winner

“excellence of making inclusion happen”

 

 

 

As a blind person for the past 23 years, I thought I had seen it all! Oh boy, was I ever wrong! After many years of practice at being blind, I have found something that is sending me for a loop.

COVID-19 has done it to me!

My world now is cold, untouchable, lonely at times–which is something hard to handle. I am not so sure I could survive the new world we are all experiencing if I did not believe that my “Heavenly Father” would not be here to catch me when I fall.

Going for a walk, if anyone is passing me by, I’m always wondering if they will possibly get me sick. Going to a market or moll and trying to get assistance, while everyone wants to run away from you. No getting together with friends because no one wants to come and visit, scared we pass the virus to one another. Walking onto a bus and being scared that the person who previously occupied the seat you are now at had the virus.

Or, a simple walk in a park and getting lost because all the roads have no traffic to give me a sense of direction. Yes, to me, this was probably one of the hardest things to handle. My world is open when I have sounds of traffic or sound barriers to help me to be able to be independent daily.

My rural places like playing fields and parks is a place I have known for the past 23 years and I am very used to going there. Now this park and field of play is very different for someone who has no sight. No children in the playground, nobody bringing the dogs to the park, no one bringing me coffee and conversation, and no cars to give me direction as to where the roads are.

The world I knew had familiar sounds to help give me direction, and this I knew was a world that was easier to deal with in my daily life. I also use a white cane and now people are scared. Put jump very first since thy know viruses can spend time on metallic objects. How does a blind person keep social distance from a sighted guide?

 

 

I also have had others say that many in the markets get upset when I use the white cane.

Now I can honestly say that the world as a blind person is hard to cope with! If I did not live in a house with a yard and with a great garden to take care of and give me joy, my world would have been lonely and hard to handle for the foreseeable future.

Meetings online may give me many hours of involvement with my community, but the time spent on electronics is starting to drive me crazy.

I love to attend meetings in person and the opportunity they provide to get to know others and how they are engaged in our community. Now this opportunity is also lost, and I find that the computer does not bring the same spirit into my daily routines.

So, for all of these reasons, “blindness” has imprisoned me again. But this time it feels like I have moved from a minimum-security prison to a maximum-security one.

Disabilities that Complicate Substance Abuse Treatment and How to Overcome Them Guest author Patrick Bailey

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

 

The last thing a person recovering from alcohol addiction needs is yet another obstacle to getting back to the life they know and love. Well-managed inpatient drug and alcohol treatment centers should ensure a physical disability does not impede full recovery.

Disabilities and Substance Abuse

People who suffer from physical disabilities have a higher risk of alcohol and drug abuse. The National Rehabilitation Information Center (NARIC) shows that about half of Americans who suffer from a disability are also likely to suffer from substance abuse (co-occurring disorders or dual diagnosis). That’s compared to 10% of the general public.

Disabled World reports that those with mobility issues—disabilities like amputated limbs, spinal cord injuries, orthopedic disability, arthritis, deafness, vision impairment, or multiple sclerosis—are two to four times more likely to abuse drugs or alcohol.

Yet an anonymous survey reveals that of those suffering from a spinal cord injury or traumatic brain injury (TBI) and also seeking addiction treatment, about half are refused admission to inpatient drug and alcohol treatment centers.

A report from the American Association on Health and Disability (AAHD) shows that physical accessibility negatively impacts the success of treatment for those with disabilities every day.

According to the Centers for Disease Control and Prevention (CDC), one in five American adults has a disability. Most worrisome for those in an inpatient facility are mobility and visual or auditory challenges that prevent them from taking full advantage of the treatment offered them.

Alcohol and drug abuse can complicate treatment for the physically disabled by interfering with therapy, rehabilitation, counseling sessions, and medications.

Overcoming Barriers to Treatment

For this reason, a physically accessible treatment center is essential to those who have both physical limitations and addiction challenges.

Group therapy and support groups can dispel social isolation and offer a healing environment for both those who suffer from addiction and their families. However, an additional layer of support is required for those with an additional disability.

Inpatient drug and alcohol treatment centers can offset this by removing or altering potential barriers to their disabled clients.

The Americans with Disabilities Act (ADA) requires that all private accommodations and commercial facilities that are not residential facilities remove barriers to communication and access that would negatively affect individuals who are disabled.

For this reason and others, a viable treatment facility must accommodate those who are disabled, ensuring they have complete access to the facility.

Making Rehab Accessible

Three factors that can affect a person’s ability to function:

  • A person’s mental, emotional, and/or physical state doesn’t function properly. This can include hearing or memory loss.
  • Activity limitations. Inability to carry out normal tasks.
  • Participation restrictions. A person who cannot participate fully, or not at all, in daily life activities because of their limits. This impacts the way the individual engages in work, social, recreational, or health-related activities that are critical for their health and well-being.

Some of the modifications needed for the disabled include:

  • Ramps and elevators that offer mobility-specific features.
  • Wider doors and hallways for those in wheelchairs or other mobility devices.
  • Power-assisted doors.
  • Even, slip-proof floors.
  • Prominently displayed braille and other sensory navigational features.
  • TTY options on phones for the hearing impaired.

Other Physical Disabilities

Physical disabilities are not confined to one’s ability to walk without aid. They may result from a birth defect, an accident, a disease, or age. Anything that prevents or diminishes a person’s ability to engage in social activities is a disability

Physical disability includes chronic health conditions that prevent a person from participating fully in their day-to-day life. This includes a variety of autoimmune diseases. Some diseases can become a secondary disability that must be considered in one’s drug or alcohol rehab.

Examples include:

  • Asthma
  • Allergies (environmental and food)
  • Crohn’s disease
  • Irritable bowel syndrome (IBS)
  • Ulcerative colitis
  • Diabetes
  • Migraine headaches
  • Cerebral palsy (CP)
  • Cystic fibrosis
  • Epilepsy
  • Fibromyalgia
  • Multiple sclerosis
  • Rheumatoid arthritis
  • Spina bifida
  • Spinal cord injuries
  • Loss of a limb
  • Traumatic brain injury
  • Cancer
  • Lupus
  • Sickle cell anemia

Learning Disabilities

The best inpatient drug and alcohol treatment centers also make accommodations for clients with learning, sensory, and mental disorders.

A learning disability alters the way a person can listen, speak, read, spell, and/or think. Such a disability impedes a person’s ability to process, recall, and/or express information.

Clients with memory problems often have trouble communicating and have a hard time performing school or job-related tasks.

Chronic health conditions such as physical disabilities are risk factors on their own. Add to that a substance abuse problem and removing as many barriers as possible is essential.

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.

Ableism and being ableist Author Mugambi Paul

Before you read this please keep in mind: my goal is not to demonize or shame people. A lot of the ableism I have encountered since I lost my “eye sight on 27th October 1997” are things
others with vision loss have been working to fix for generations. My ableist behaviours that I wasn’t aware of in the past can hopefully serve to open other
people’s eyes (blind pun unintentional). It was privilege that allowed me to ignore my lack of knowledge.
I used to be a shy and easy to inculcate ideas.

My goal here is to help and highlight ways that can become steps to build change. I hope that we, together, will be working towards understanding how us
actions and words establish an environment that puts up barriers, destroys ambition and steals independence.
Through this we can promote social inclusion.
What is being ableist or ableism? I will let you go to Urban Dictionary for a far better description than I could probably come up with:
https://www.urbandictionary.com/define.php?term=Ableism
.

Who does it? I know I have, my family, friends and of course random strangers do it. How does someone stop themselves from doing it? We, we can start
by not making assumptions, by asking questions, and recognizing that the person with the disability is the expert on their situation.

This is a huge subject, just like racism, sexism or any other form of bigotry – there are overt and covert ways it occurs. I don’t know enough to point
out all the different ways it happens. This paragraphs post isn’t going to be nearly long enough to cover more than some of my experiences (because that’s
what I know). Taking that in account, I want to explore it, make people aware and maybe stop someone from offending a person just because of their incorrect
assumptions.

Quick examples:

list of 5 items
1. It’s the person that thinks you can’t do something because you have you can’t see or have other ________ disability.
2. People that assume that when you blind you can’t even hear!
3. The person that just starts “helping” without knowing what you are doing or are able to do.
4The subtle and not so subtle ways people treat you differently.
5The people that think they are just more capable at doing things because you have ______. blind
6 The people that are sure they know a cure for my Blindness______.
list end7. Actors and comedians, MC
‘s who act as Blind or other disabled individuals!

check out Nairobi Memoires and get the life time experiences recorded in 2015 2016

I know what I am capable of (most of the time) and at times acutely aware of what I can’t do. Part of learning to adjust to living with a disability is
figuring that out and building solutions to make stuff work for you. It is sometimes a real challenge to find an issue and then coming up with a solution.
Everybody with a disability or impairment does this, even those who discover that the best option for them is to choose not to do something.

On any given day, in the city of Nairobi I have been grabbed by strangers (at least twice) in an attempt to give unwanted and misguided assistance. They grab my arm to guide me, grab
my cane to steer me and try to pull me into the street while I am waiting for the light to change.
One day my Whitecane brokedown after the push and pull!
Sometimes people have good intentions but at list communicate!
Recently I was chosen to be part of a focus group. Sometimes even in the job market when they see a blind or vision impaired person, they assume I couldn’t participate. Sometimes not given a chance to display the skills They thank me for my time and
sent me on my way. As someone that is Public scholar, I believe we have a long voyage.
, this reminds of what I will have to deal with.

Learning, problem solving, and dealing with a world not built to be accessible is hard and at times overwhelming. Then, you work through it and next time
it is hopefully easier. Having people that assume you can’t don’t make it any easier. Just dealing with people that make my mobility difficulties worse
can be exhausting. Finally, there is actually doing things I want/need to do.
I thank Canberrans for their humbleness and understanding.
You are guys from another planet.
I admire the communication when we meet.

To the Nairobians, the next time you encounter a person with a blind and vision impaired, don’t make any assumptions. Some of us have undergone through a pretty extensive training on using a white cane,
crossing a street and orienting ourselves while travelling.
Thanks to vision Australia and guide dogs am confident and I am able to travel with ease.

The same goes for people with hearing, physical, mental or any other disability. In some ways the folks with invisible disabilities have a much more difficult
existence. You look like you aren’t disabled to other people but meanwhile you are trying to find ways to make a world not designed to be accessible to
bend, and to not be a barrier to doing the things we want/need to do.

At the same time, about privilege. Some people have lived their lives without a vision impairment my way of adjusting may appear different
than someone that has dealing with this for years or a lifetime. None of it is wrong, the way you respond might be. Judgement, assumptions, and lack of
knowledge is what I feel are the greatest barriers.

Mugambi Paul is a public policy expert in diversity and inclusion.