Can Persons with Disabilities Access Safe Working Space? A Message to Employers

In the current world and market trend, access to employment is extremely cumbersome as a result of stereotypes and misconception of what people with disabilities can't do. This has led introduction of quotas (affirmative actions) in different laws (like article 27 of the Convention on the Rights of Persons with Disabilities) to enable qualified persons with disabilities to get employed.

Advocacy, lobbying and awareness has enabled qualified persons with disabilities to qualify for job markets, for the few people with disabilities who are employed, access to safe work place remains an issue that works against inclusion and embracing of diversity.

As a person with disability some of the things that might prevent you to being included at work place includes:
a) Battling negative employers attitudes, for instance employers making it seem like an employee with disability wasn't qualified for that job.
b) Secondly having to disclose your personal or medical condition to all employees in order to get reasonable accommodation or adjustment hence limiting your privacy.
c) Being a victim of psychological abuse for instance being yelled at in the presence of your colleagues, or a reprimanding message being copied to all your colleagues, your duties and responsibilities being delegated without your consent and the employer only reacting to mistakes and not success.
d) Having to request what is obvious like making environment accessible.
e) Your voice being diminished and your professional ideas not being welcome.
f) Being left out during crucial functions for instance finding yourself to be the only persons with disability left in the office while all your colleagues are out to launch a product or to celebrate an international day that relates to your work.
g) Being underestimated; for instance being allocated minor roles that are not on your job description.

Such factors do not only hinder inclusion but they enhance stigma against persons with disabilities; (and this is considered be discrimination on basis of disability).

Even worse, such toxic working conditions might lead to persons with disabilities acquiring multiple disabilities that are secondary to what they already have. Such can include depression, anxiety, self hate etc.

My message to the employers and all leaders is that employment for persons with disabilities goes beyond fulfilling the quotas and the public relations of showing how many people with disabilities you've employed but making the environment safe enough for them to contribute towards their growth and the growth of your organisation. Inherent dignity of persons with disabilities shouldn't be diminished at work place.

Cheers!!!

International Wheelchair Day

First March each year the world commemorates international wheelchair day and this years theme is 'My Wheelchair my Right to Inclusion'. 

Wheelchair is a basic assistive device that supports inclusion and independence of persons with disabilities in their communities as it enables them to participate in activities of daily living. However, in most nations people with disabilities face a number of issues in accessing them, These factors include; the devices being unavailable locally, very high cost that leaves most people to crawl (hence lowering their dignity) and the little that are available locally are of poor quality that aren't fit for the terrain or specifically tailored for individual need and environment hence making persons with disabilities to develop secondary disabilities from the poorly manufactured ones.

Secondly, the infrastructural sector does not embrace the universal design (inclusive design) which is supposed to provide means of embracing everyone in our society in accessing environments and building that are inherently accessible.

This blog advocates for a society that respects persons with disabilities through:

1. Development of policies (Government) that promote persons with disabilities accessing wheelchairs and other assistive devices that are available locally, affordable, acceptable and of good quality.
2. Professionals in the architectural field to embrace universal design in order to facilitate inclusion and independence of persons with disabilities.
3. And wheelchair manufacturers to produce quality wheelchairs that are tailored for individual persons with disabilities and their environment.

Cheers!!!

 

Reflection on Indigenous Persons with Disabilities Workshop

20th to 23rd of August 2018 was an exciting week, I participated in a workshop for indigenous persons with disabilities in Bomet Kenya as a co facilitator. The workshop was organized by the Indigenous Persons with Disabilities Global Network (IPWDN), the Narok South Disability Network and International Disability Alliance (IDA).

The aim of the workshop was to impact knowledge on Indigenous leaders with disabilities in line with the Convention on the Rights of Persons with Disabilities (CRPD), United Nations Declaration on the Rights of Indigenous people (UNDRIP) and Agenda 2030.

My Reflection:

Indigenous persons with disabilities being at the grass root level of the community face multidimensional barriers and sharp effects are on children and women with disabilities from these communities. Some of the barriers include:

1. Stigma and discrimination
2. Negative cultural practices like Female Genital Mutilation (FGM)
3. Access to education
4. Access to health
5. Not being counted during census due to nomadic life
6. Women with disabilities in the communities being compared to women without disabilities
7. Lack of national registration: like national identity card

Constitution of Kenya, Convention of the Rights of Persons with Disabilities and the Declaration on the Rights of persons with disabilities offer a clear legal framework that can support indigenous persons with disabilities in enjoying their rights on equal basis with others. Moreover, people from this communities need more developmental support from the government and civil society organizations without destroying or diluting their cultural identity.

Cheers!

Depression Common Cause of Suicide

Grace Wanjiku Matu owner of Mawingu Production (YouTube channel) is a youth with spina bifida who is involved in art for entertainment and educating the world.

She recently wrote a Poem entitled 99 problems that aims on raising awareness on depression a type  psychosocial disability that is overlooked... yet it is a common cause of barriers like exclusion and suicide among our communities. She describes depression in a poetic way, affirms that it is treatable and calls out for people to reach out!

I've got 99 problems                                                     

And happiness is one of them 

I've been feeling down lately 

But not the usual down

It goes beyond sadness and hurt

To a pit of loneliness and hopelessness

It's darkness really.....

Darkness that you somehow got yourself into

But you can't get out

It was entrance only but not exit

My energy plummeted to the floor 

My Confidence is non-existent

But I have this façade that I have to keep up

See I've heard it before, even done it before

Thinking I could give you a glance to my world

In the hope you'll be my savior

But you turn your back with word like 

Snap out of it!

You're such a Drama Queen!

It takes everything in me 

To smile and to be normal

But sometimes I have nothing at all

So I stay away disconnect from you and your plans

I have no energy to dance, to work 

I have got no energy for life

I've got 99 problems and silence is one of them

I hate the name calling

I hate the whispers

The weird look from my peripheral vision

I don't want to be weak

As she blatantly put it

I just want to be me 

But I don't know how to anymore

How you have care for a broken leg or an infected wound

But I have none for my broken heart and infected mind

I have no idea

I will silently drown my pillow with tears

Silently fight a battle I'm loosing 

Until I find the courage to work with a permanent Solution

Let's support Grace by subscribing to her You Tube channel (Mawingu Production) and remember that all disabilities are not visible let's reach out!.

Cheers!

Is Termination of Spina Bifida Pregnacies Right?

In our current world, termination (abortion) of pregnancies with spina bifida is becoming a norm as parents are lured into it right after prenatal tests. In most cases this happens after medical professionals present one side of the coin that predicts challenges of lifelong care for children with spina bifida and hydrocephalus. In some cases parents are denied the chance of making their own decision independently.

Some countries have gone to an extent of legalizing this process. However, NO ONE can predict the quality of life that an individual with spina bifida and hydrocephalus can have. This fact therefore leaves a space for children with spina bifida to live and be who they are meant to be.

Abortion of pregnancies on basis of disability like spina bifida and down syndrome eliminates the aspect of diversity in our world, this is also a way of hiding issues instead of solving them. Existence of people with spina bifida and other disabilities provides creativity and innovation.

International Federation for Spina Bifida and Hydrocephalus has gathered a number of personal experiences of people with spina bifida and hydrocephalus and all the stories have one thing in common: Love for life

PS: Spina bifida is defect of the spinal cord that occurs a few days after conception

Life is divine!

Cheers.

Barriers Towards Inclusion of Persons with Disabilities

There are many types of disabilities, some are visible while others are invisible. These disabilities are never an issue as they justify human diversity. The biggest issues are barriers that prevent persons with disabilities from being included in their communities.


Attitudinal barrier: This includes a negative perception of disability like discrimination, stigma and stereotypes. This barriers have misconceptions that tend to focus on inabilities instead of abilities for instance, when meeting a person with disability for the first time and you decide to ask "What happened to you?" that's an instant attitudinal barrier.
The concept of seeing disability as physical is also an attitudinal barrier that may leave out people with learning disabilities among others.




Physical barriers: These barriers come as a result of inaccessible infrastructure that hinder independence and mobility of persons with disabilities. This issue can be resolved by universal design in the architectural systems.

Communication barriers: These are obstacles towards effective communication and may include lack of easy read materials for persons with intellectual disabilities, lack of large print for people with visual impairments, lack of audio or braille material, lack of sign language interpreters for persons with hearing impairments and the use of disability unfriendly language.





Institutional barriers: These are obstacles within institutions these includes; the do's, don'ts, policies, bi-
laws and laws that prevent persons with disabilities from being included in their communities.

A barrier free society starts with you and me. Let's work towards it together.

Cheers!

Claiming Your Right as a Woman with Disability

Women with disabilities tend to get double discrimination; by the fact that they have  disabilities and secondly as women.This therefore makes them to be more vulnerable and marginalized in their communities.

Convention on the Rights of Persons with Disabilities (CRPD) provides legal measures that can protect, promote and fulfill rights of women with disabilities .

On 8th of March 2018 we commemorate international women day and  knowing certain factors can enable you to claim your right as a woman with disability:

• Having a disability does not eliminate the fact that you are a woman;
• Get registered as a person with disability by national disabled persons organizations;
• Knowing legal framework that protect you locally, nationally and internationally;
• Join women rights movements both for persons with disabilities and mainstream movements (unity is strength);
• Grab opportunities that lie ahead of you;
• Request reasonable  accommodation at work, learning institution, hospital and community;
• Learn self defence tactics
• Know where to seek help or to report when your rights have been violated;
• And for the women with disabilities who have made it in life let's reach out by mentoring other women with disabilities.

Have a great women's day!

ps:photo of Carol Wanjira a young woman with spina bifida

DEMYSTIFYING CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES

United Nation's Convention on the Rights of Persons with Disabilities (UNCRPD) is the most comprehensive law that focusses directly on the rights of person with disabilities. However, it can be quite complex for a lay person to understand its content due to many articles and legal jargons that it contains.

Article three of the convention provides general principles, in my opinion this is the 'heart' of the convention and it  helps us to demystify it. All the 49 articles are linked to this article. Knowing it can help persons with disabilities and different stakeholders in the society to claim rights and to work towards a barrier free society for people with disabilities.

What is the content of article three of UNCRPD?

1. Respect for inherent dignity, individual autonomy including the freedom to make one's own choices, and independence of person,
2. Non-discrimination,
3. Full and effective participation and inclusion in society.
4.  Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity,
5.  Equality of opportunity,
6. Accessibility,
7. Equality between men and women,
8. Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.  

Have a great day as you continue working towards a better society!

WHAT IS REASONABLE ACCOMMODATION?

Accessing services, work,  buildings and other social amenities are among huge challenges that affect  people with disabilities and prevent them from being productive in their communities. This can be solved by reasonable accommodation:

What is reasonable accommodation? 

• Reasonable accommodation is necessary adjustment and or modifications to ensure that persons with disabilities enjoy and exercise their rights on equal basis with others. 

• Reasonable accommodation can be achieved through request.

Most countries have ratified the Convention on the Rights of Persons with Disabilities (CRPD) that makes it legal for service providers and communities to provide reasonable accommodation to persons with disabilities.
There is a misconception that reasonable accommodation has to do with accessing work place. it however goes beyond working environment. It should be holistic.

Example of reasonable accommodation includes:

1. Provision of extra time and and extra learning materials to people with intellectual disabilities.
2. Building of temporary and or permanent ramps in buildings to allow people with physical disabilities to access buildings.
3. Provision Brailled documents and or voting cards to people with visual disabilities during electrol process.
4. Communities and service providers availing sign language interpreters for people with hearing disabilities.
5. Communities and service providers can also provide tactile interpreters to people who are deafblind.

To all people with disabilities remember to ask.

Cheers!

CRPD and SDG fellowship

Since the beginning of April 2017 to this moment has been my fellowship journey with International Disability Alliance and International Federation for Spina Bifida and Hydrocephalus. My main duty has been to empower a network of spina bifida and hydrocephalus organizations based the Convention on the Rights of Persons with Disabilities and Sustainable Development Goals.

Why Folic Acid?

The world is moving first in acknowledging the importance of health, this is evident through development agendas like goal three of the Sustainable Development Goals (SDG) and Legal framework like article 25 of  the Convention on the Rights of Persons with Disabilities (CRPD)

However, little in known about folic acid and its importance.

What is folic acid? Folic acid or folate is a section of vitamin B. Folic acid has a lot of health benefits, among them being prevention of neural tube defects to unborn babies like spina bifida (defect of the spina) and anencephaly (lack of parts of the brain).


8th to 14th of  January 2018 is world follic acid awareness week. This campaign is spear headed by the International Federation for Spina bifida and Hydrocephalus (IF). Remember to read the link for more information, eat healthy, take follic acid, share widely to protect lives of unborn babies and to stay healthy.

Cheers!

How to be a Self Advocate

Have you ever found yourself in a situation where your voice is not heard, wings have been stepped on or your rights violated? That's what it takes to be a self advocate?

Such situations happen to everyone, whether you have a disability or not. however, people with disabilities tend to experience this on a regular basis.


There are important steps that will assist you in being who you are supposed to be or achieving what you want:

• Believing in your self; this includes knowing your worth and acknowledging that your disability is part of worlds diversity.
• Knowing your rights, benefits and responsibilities; knowing local, national and international laws that protect, promote and fulfill your rights like the Convention on the Rights of Persons with Disabilities (CRPD).
• Discussing your questions and concerns
• Put your concerns in writing
• Get information and decision in writing
• If that doesn't work use chain of command
• Follow up

PS: The above picture was taken during a self advocates workshop for youth with spina bifida and hydrocephalus in Kijabe Kenya.

Happy new year to you all!

Solidarity for People with Spina Bifida and Hydrocephalus

This month has marked two important days: International Day for Persons with Disabilities on 3rd December and International Human Rights Day on 10th December. This year's theme of IDPD was "Transformation towards sustainable and resilient society for all"  These two days have been a good platform to advocate for the rights of persons with disabilities in line with the Convention on the Rights of Persons with Disabilities and Sustainable Development Goals.

Most human rights advocates dwell on social barriers that prevent inclusion of persons with disabilities forgetting medical barriers. As much as such efforts are good, they have worked towards depriving some basic rights to people who have disabilities. In order to achieve all rights that affect people with spina bifida, hydrocephalus and other disabilities, there is a need for an integrated developmental approach that blends both social and medical model towards addressing disability matters. This will ensure that no one is left behind.

It's time for human rights advocates to be in solidarity with people who have spina bifida, hydrocephalus and other disabilities that need medical attention.

cheers! 

Some People Are Born Free and Equal

All people in the world are born free and equal. however circumstances and barriers in life can determine how free and equal you can be. People with Spina bifida and Hydrocephalus face social, medical, economic and political barriers that prevent them from being included in their communities.

Earlier this month International Federation for Spina Bifida and Hydrocephalus organized an African workshop that convened professionals, parents and young people with spina bifida and hydrocephalus in Mombasa, Kenya. The main goal of the conference was UNCRPD and Health. I was privileged to offer a training on CRPD and SDG own how the two International treaties can work towards equality and non discrimination of people with spina bifida and hydrocephalus.

PS: The above picture was during an activity 'Game of life': demonstrating how barriers and opportunities in life can affect how equal and free someone can be.

Reclaiming my Health: World Spina Bifida and Hydrocephalus Day 2017

It is only two days to world spina bifida day!


"The main aim of world Spina bifida and hydrocephalus day is to raise awareness and understanding about Spina Bifida and Hydrocephalus. On this day we also advocate and promote the rights of people with these two conditions." IF

This year's focus will be Mental Health of persons with spina bifida and hydrocephalus. International Federation for Spina Bifida and Hydrocephalus (IF) launched animation  "Reclaiming my Health" highlighting the importance of an integrated approach to persons with spina bifida and hydrocephalus and their families.

United Nation's Convention of the Rights of Persons with disabilities and Sustainable Development Goals promote inclusive (health) well being for people with disabilities. People with complex disabilities like spina bifida and hydrocephalus need it more!


Help me share the message on before, 25th October 2017 and Afterwards for an inclusive  and informed society!



Cheers!

My Highlights; High Level Political Forum on Sustainable Development Goals

From the 9th to the 20th of July 2017, I represented IF at the High Level Political Forum on Sustainable Development Goal (These are broad development Goals that should be achieved by 2030 by leaving no one behind) in New York. My Participation was through the stakeholder group of persons with disabilities which had aim of ensuring that the UN member states report on the progress that they have made in achieving Sustainable Development Goals for People with Disabilities. 

 

Throughout the week, things that struck my mind were; groups that are at risk of being left behind include persons with disabilities, access to universal education and universal health is a treat that should be part of the poverty eradication plan.

 

Cheers Friends!

Disability Rights are Human Rights

People with disabilities have rights on equal basis with other people who do not have disabilities, however, most local and national law have failed to be specific and inclusive hence not protecting interest of people with disabilities.

United Nation's Convention on the Rights of Persons with disabilities (UNCRPD) is specific on how rights of people with disabilities can be achieved while the Sustainable Development Goals has objectives and plans of leaving no one behind.

This is the reason why I received the fellowship International Federation for Spina Bifida and Hydrocephalus (IF) and International Disability Alliance (IDA), based on the two treaties with the aim of bridging the gap in disability rights.



The knowledge that I have gained so far has enabled me to train grass root Disabled People Organization on UNCRPD and SDG with the aim of achieving inclusion for people with disabilities in Kenya and Tanzania.


      

PS: The first picture was during a workshop training on UNCRPD in Kenya, Second picture was when I attended Committee on the rights on the rights of Persons with Disabilities in Geneva Switzerland while the third picture was during a workshop in Kilimanjaro region Tanzania.

Fellowship from International Disability Alliance

This year I am so delighted to receive a disability rights fellowship, based on the United Nation's Convention on the Rights of Persons  with Disabilities (UNCRPD) from the International Disability Alliance (IDA). This was as a result of being nominated by International Federation for Spina Bifida and Hydrocephalus (IF). Throughout the year I will receive mentoring and logistic support from My Right Tanzania.

The main objective of this fellowship will be to support national and local Disabled People Organizations like: Association for Spina Bifida and Hydrocephalus of Tanzania (ASBHT) and Spina Bifida and Hydrocephalus Association of Kenya (SHAK) in awareness raising on the provisions and implementation of the United Nation's Convention on the Rights of Persons with Disabilities. My Focus will mainly be towards People with Disabilities and their families, healthcare providers, teachers, legal professional and community leaders with the aim of enabling then to use UNCRPD for inclusion of people with disabilities. 

I am hopeful that this will yield fruits for people living with disabilities in Kenya and Tanzania!

Every Life Does not Count

Life is the most precious gift ever, however, there are controversies on who has a right to live and who doesn't have a right to live.

From my personal experience of living with spina bifida, hundred of friends with spina bifida and hydrocephalus who surround me not forgetting hundreds that I am serving here in Tanzania..... we are trying to bit all odds and living just like anyone else.

Globally, there are human rights treaties that intend to protect the lives of people with disabilities, however, lives of individuals with spina bifida, hydrocephalus and down syndrome do not count, slowly the world has justified this by allowing termination of pregnancies on basis of disabilities. This has diminished the worth of people with these disabilities... In my own opinion this is like being told you are not supposed to live because you have spina bifida, hydrocephalus or down syndrome.

For this reason, I am leaving you with a food of thought..... Does every life count?


Psalms 139:14  "I praise you because I am fearfully and wonderfully made....."

Children Can Learn More to Make a Better Society

As a child with disability growing up was never easy for me as I was bullied from time to time. Giving it a thought, life could have been better for me and for more children who have disabilities if the bullies and other kids could have been made aware about different disabilities.

On Friday, I was requested to give a lesson about people with special needs at the Youth with a Mission base in Mwandege coastal Tanzania and the biggest lesson that I learnt is that our society can be a better place if children are taught and made aware of different situation and realty that people are living in.

I was more impressed when the children told me that for a better community children with different disabilities should join school. Moreover I learned that most of the kids had friends, close relatives and neighbors who had disabilities but never talk about it.

If our children can learn a little more about diversity, then that will minimize discrimination hence foster integration for people with disabilities and other special groups.

God bless!