(This article, compiled by Elizabeth Ombati, OPD EO Kenya and Rejaul Karim Siddique, OPD EO Bangladesh, was first published on the International Disability Alliance (IDA) website.)

It is highly likely that we have encountered, in communications where persons with disabilities are concerned, or in general discourse on disability, common threads that portray the experience of disability in ways that are far from what the Convention on the Rights of Persons with Disabilities (CRPD) is based on. This means that either it is language or communication that still portrays people with disabilities as needing care, as being a burden (charity models), or as needing to first have their impairments fixed/cured before they can participate in society (medical models).

Hardly ever do we see the focus being on barriers and how they restrict participation, what it would take to remove these barriers, and offer appropriate support to have persons with disabilities fully and meaningfully involved in our communities.

“John is an excellent employee despite his disability.”

“Joan’s disability has not stopped her from excelling as a good student.”

“In spite of his condition, he is always wearing a smile.”

What picture is being painted by these comments? It could be deduced that the thinking is driven by societal stereotypes against persons with disabilities, which in most cases see them as ‘incapable/underachievers’, or as ‘extraordinary/overachievers’ (there is a long list of stereotypes) but never just normal like everyone else. It appears that the picture of what people with disabilities should or should not be – putting too much pressure on ‘excellence despite,’ or ‘even if I don’t amount to much, that is the way it should be anyway’.

The Article 8 of the CRPD is dedicated to awareness raising. Calling on States parties to adopt measures to raise awareness about persons with disabilities throughout society; to foster respect for the rights and dignity of persons with disabilities; to combat stereotypes, prejudices and harmful practices, including those based on sex and age, in all areas of life; and to promote awareness of the capabilities and contributions of persons with disabilities.

A report of the Office of the United Nations High Commissioner for Human Rights (OHCHR) on awareness-raising under Article 8 of the CRPD states thatpersons with disabilities may adopt negative attitudes themselves, limiting their personal expectations and ambitions and resulting in lower self-esteem and disempowerment. It goes on to add that persons with disabilities may be more exposed to abuse and exploitation due to their lack of awareness and information about their rights, what such rights entail and how to exercise and invoke them should they be threatened or infringed.

It is therefore imperative that a whole society approach is adopted within all awareness raising initiatives. As the OHCHR report notes, examples include training and other face-to-face strategies that promote changes in attitudes that should be directed at persons both with and without disabilities; curricula at primary, secondary and tertiary levels of education should include disability-inclusive human rights; at family level as families play a crucial role in empowering persons with disabilities, at an early age and throughout life. Well-informed families can ensure that the rights of persons with disabilities are also respected in the family context.

At the core, understanding that the presence, portrayal and participation of persons with disabilities in the broadcast media, both on and off air, can rapidly improve efforts in the media companies and their products to change attitudes. There is need therefore for states and non-state actors to work together with the public and private media to increase the participation of persons with disabilities, in consultation with them.

It is also very important that persons with disabilities access avenues to know, seek and receive information about all human rights and fundamental freedoms as reflected in Article 21 of the CRPD regarding access to information. Such information must be in accessible formats including braille, sign language, easy to read and plain language versions, large prints, closed captioning, written or audio description among other formats.

In our diverse spaces therefore, we must endeavor to rely on communication that is in line with the CRPD. Summarizing from the Inclusive Futures CRPD communications guide – a working document, some key messages include:

• On language, use terms that are accepted by the movement of people with disabilities. Do not use euphemistic or patronizing language, either in English, locally spoken or national languages. For example, to avoid terms like differently-abled, special abled, etc.
• Using person first language: CRPD-compliant communication uses person first language.
• Use the social model of disability, not the medical or charity model, which includes avoiding glorifying overcoming of disability. For example, avoid terms like ‘in spite of’ and ‘despite’. The focus should be on creating inclusive environments and systems.
• Acceptance of people with disabilities as part of human diversity to avoid depicting having a disability as something heroic or pitiable. While successes should be celebrated, it should not be based on the ‘overcoming’ of disabilities, but the barriers.
• Looking at systemic barriers while portraying individual stories. This could mean shifting the focus from only looking at how the individual addressed barriers to also looking at what those barriers are and how systemic interventions are needed to remove them for all people with disabilities.
• The OHCHR report notes that abusive language against persons with disabilities is largely unrecognized as hate speech, mainly because of the commonly considered unintended nature of discrimination based on disability. Nevertheless, hate speech against persons with disabilities contributes to maintaining an ableist climate that has consequences beyond the individual targeted and an impact on persons with disabilities as a group. Hate speech may also constitute or lead to hate crime and bullying, which is a growing trend in online hate speech. Linking this to the case study shared in this article from Bangladesh, another recommendation therefore is the need to have stringent, punitive measures to curb the publication and use of words/ messages that give a negative sense of disabilities or spread misconceptions/myths/misperceptions about disabilities. There is also the need to ensure proper implementation of laws with a strong monitoring mechanism.

Case Study: Negative portrayal of persons with disabilities in media causes harm in their inclusion and participation

Recently in Bangladesh a prominent television network “Channel I” aired a telefilm named “Ghotona Sottya” which spread a key message that sins of parents result in their children having impairments! In an earlier incident, the same network aired a very popular talk show named “To the Point” where a discussion gave a disability linked analogy to describe the poor performance of the Bangladesh football team. Both of these shows that degrade and devalue the lives of persons with disabilities are available on their social media channels and are reaching millions of people.

Such disregard to the lives of persons with disabilities by the network and individuals involved did not just reinforce stereotypes but also potentially put persons with disabilities at a higher risk of violence, abandonment, confinement, discrimination and social injustice. People with disabilities, their family members and OPDs are protesting against the negative messaging about disabilities. As a result of this advocacy, the telefilm has been removed from the YouTube channel and the concerned artists have apologized to persons with disabilities and their families.

The OPD Engagement Officer (OPD EO) Bangladesh has been engaged in mobilizing OPDs by disseminating legal information based on the CRPD and other available domestic legislation. The OPD EO is coordinating with OPDs so that a strong advocacy campaign can be undertaken with relevant ministries and departments. He was invited to the Board meeting of the Protection of Persons with Neuro-developmental Disabilities Trust (a government organization) to provide feedback on potential actions that may be taken by the Trust.

The Bangladeshi disability movement is demanding action be taken against those involved as per the Rights of Persons with Disabilities Act, 2013. The OPD EO is leading the legal action based on the violation of the law, with six prominent OPD leaders including their names as witnesses in the complaints which have been filed in the Court of Metropolitan Magistrate, Dhaka on 11 August 2021. Learned Court ordered the Police Bureau of Investigation to investigate and submit report on 22 September 2021.

The International Disability Alliance and International Paralympic Committee are leading the #WeThe15 campaign together with international partners. The campaign commenced on August 19, 2021 and will go on until September 5, 2021.

This 10-year campaign aims to be the biggest ever human rights movement to end discrimination against persons with disabilities and transform the lives of 1.2 billion people – that’s 15% of the whole world.

#WeThe15 has brought together a large coalition of international organisations from the world of sport, human rights, policy, business, culture, and entertainment to initiate change for the world’s largest marginalised group.

Read: WeThe15: A global human rights movement for the 1.2 billion persons with disabilities

Read: IDA celebrates the launch of #WeThe15

The Guidelines on Indicator 5: Consulting Persons with Disabilities were developed by the Disability Team in the Executive Office of the Secretary-General in collaboration with members of the United Nations Disability Inclusion Strategy (UNDIS) focal point network, the International Disability Alliance and other civil society organizations.

These Guidelines are available in multiple accessible formats on the UN Disability Inclusion Strategy website:
www.un.org/disabilitystrategy/resources

Or, click here to read: Guidelines on Indicator 5: Consulting Persons with Disabilities (PDF version)

Easy-to-read version: Guidelines on Indicator 5: Consulting Persons with Disabilities (ETR version)

Down Syndrome South Africa seeks priority access to COVID-19 vaccines for individuals with Down syndrome

Down Syndrome South Africa (DSSA), calls on the national Department of Health to immediately proritise vaccines for individuals with Down syndrome 18 and above, including all those in residential facilities and not just by age co-horts, their primary caregivers and support staff.

In a survey conducted by DSSA, 94% of families indicated that they wanted their children to be vaccinated.

Down Syndrome South Africa, a non-profit umbrella body was established in 1986, as a parent advocacy organisation for the promotion and protection of the Constitutional rights of all persons with Down syndrome and their families. The organisation has 12 regional associations and support groups throughout the country.

On the 30th January 2020 the WHO organisation declared COVID-19 a global pandemic, of importance was the policy brief issued by the WHO and UNICEF on 19 April 2021 on Disability considerations for Covid-19 vaccinations.
The response to the Covid-19 pandemic has exposed inequalities, deepening discrimination and marginalisation .

Persons with disabilities are disproportionately impacted by Covid-19, both directly because of infection and indirectly due to restrictions imposed to stop the spread of the virus. Most persons with disabilities experience additional health complications, including co-morbidities.

According to the International Disability Alliance, health systems, in particular emergency health responses are far from being inclusive and accessible.

Down syndrome is a genetic condition caused by a full or partial extra copy of chromosome 21, this extra chromosome alters the course of development both physically and intellectually and increases the risks to certain medical complications.

Recent research has shown that individuals with Down syndrome, particularly those over the age of 40, and younger individuals with significant co-morbidities are at a higher risk of severe outcomes from Covid-19 and are at 10 times greater risks of dying from Covid-19 compared to the general population.

Statement by The Trisomy 21 Research Society:https://ital.campaign- view.com/click.zc?od=3z272f681767d5df3b645705507ab3dd440509d8309db14b2e26e5c59fc524defd&repDgs=164d1cfa95ad d067&linkDgs=164d1cfa95a8fa1c

Their risks may be further increased due to barriers in implementing and following basic hygiene protocols, difficulty in enacting social distancing, as they are dependent on others to take care of their personal needs, most live in crowded dwellings with large extended family members, in group homes or other assisted living facilities which puts them at risks to contracting the virus.

Barriers such as communication challenges in understanding preventative measures and communicating the severity of the symptoms of their illness.

In the context of limited supply of vaccines, the race is on in the fight against the devasting Delta variant which has seen an upsurge in positive cases. Government’s sudden turn around to remove all those with co-morbidities from the second phase, further demonstrates its failure to properly consult with persons with disabilities and their representative organistions in inclusive response measures.

The WHO has issued statements calling on governments to give considerations to disability according to guidelines of the WHO in terms of prioritization. Healtcare can neither be universal nor equaitable if it is less accessible to some sections of society than it is to others.

This virus does not discriminate nor should our government.

(Reposted with permission from This Ability. Original link to the article: https://www.thisability.co.za/2021/07/07/down-syndrome-south-africa-seeks-priority-access-to-covid-19-vaccines-for-individuals-with-down-syndrome/

Framing a Discussion Paper for the Global Disability Summit 2022

The International Disability Alliance (IDA) and the Government of Norway will host the second Global Disability Summit on 15 – 17 February 2022 (GDS22). The Global Disability Summit 2022 provides a unique global opportunity to generate commitments to advance inclusion of persons with disabilities. Participation of organisations of persons with disabilities (OPDs) has been identified as a cross-cutting theme and an important area of focus that should underpin GDS discussions and commitments. As a co-host of the GDS and global OPD network, IDA has been mandated to lead on the development of a Discussion Paper on OPD engagement.

A small advisory group has been set-up to guide the process of the discussion paper. Known as the G3, the group will support the review and selection of Good Practices/ Case Studies that will feed into the paper. The G3 will also screen and propose a selection based on the parameters described in the full call for submission. Pre-selected applicants may be contacted directly for further information and/or to validate how their work is being included in the final text of the GDS Discussion Paper.

How to submit a Good Practice/ Case study?
To be able to develop this Discussion Paper on OPD engagement, we will need your good practice / case studies.

• Read the full call for good practices in English (also attached)

Once you have completed the form, please send it by email to summit@ida-secretariat.org by the 8 September 2021.

Please contact Emma Pham at epham@ida-secretariat.org if you face any difficulty or would like to share your good practice in an alternative format.

Bridge CRPD-SDGs Kenya Module 1 kicks off with participants
from Ethiopia, Kenya, South Sudan and Uganda

By ADF

Bridge CRPD-SDGs, a unique inclusive capacity development training initiative between the International Disability Alliance (IDA) and the International Disability and Development Consortium (IDDC), commenced in Nairobi, Kenya on June 24, 2021 with 35 participants, including a few from Ethiopia, South Sudan and Uganda. The Bridge CRPD-SDGs training, being held over the period of seven days from June 24-30, 2021 aims to support organisations of persons with disabilities (DPOs) and disability rights advocates to develop an inclusive (all persons with disabilities) and comprehensive (all human rights) CRPD perspective on development, including the post-2015 development agenda and Sustainable Development Goals (SDGs), to reinforce their advocacy for inclusion and realisation of rights and persons with disabilities.

The opening remarks were given by Sarah Kamou from the United Disabled Persons of Kenya (UDPK). She welcomed the participants and thanked IDA and IDDC for hosting the training in Nairobi. “Bridge CRPD-SDGs training is like advocacy at all levels. This initiative aims to support persons with disabilities and advocates of disability movements. There is a need to create awareness for persons with disabilities to join DPOs and speak in one voice,” she said.

Kamou further emphasized, “Together, let us make this training count by raising awareness. We need to embrace the importance of a disability movement and encourage other persons with disabilities to come forward and speak as one voice, especially the more marginalized types.”

Abebaw Abebe, Project Manager with African Disability Forum (ADF), gave a brief overview of the organisation and the work being accomplished with its 43 member-DPOs. ADF is a continental member organisation of DPOs in Africa and seeks to strengthen and unify the representative voices of Africans with disabilities, their families and organisations. Tchaurea Fleury, Director of Capacity Building at IDA, enlightened the participants on the overall structure and significance of the Bridge CRPD-SDGs training, which brings together leaders from the disability movement in a safe space for open dialogue and constructive exchange including peer learning and mutual accountability.

Bridge CRPD-SDGs initiative has a strong impact on imparting knowledge to participants and supports them in related advocacy activities. The trainers discuss the CRPD in depth to facilitate the participants the various ways in which they can instrumentalise it. Inclusive facilitation styles and tools are used to engage the participants in different role plays preparing them to identify and overcome — using the CRPD and SDGs — the challenges they face in their daily lives, at their workplace, in their homes or at public places.

Explaining the structure of the Bridge CRPD-SDGs, Fleury said, “We are we. We are us. Each one of you is a part of this Alliance. With your participation, we make this Alliance. IDA is a global alliance of persons with disabilities. The key purpose of this Bridge CRPD-SDGs is to equip the DPOs to push their governments, using the CRPD and SDGs, to make public policies more inclusive of persons with disabilities and their rights.”

“Over 50% of the participants in Bridge CRPD-SDGs are women. We also pay strong attention to the most underrepresented groups such as people affected by leprosy, people with albinism, psychosocial disabilities and autistic people. We are jointly and individually responsible to impart knowledge. We learn from you. We learn from each other,” she further iterated.

The Bridge CRPD-SDGs training has opened informal learning spaces for the participants and is split into two modules – Module 1 and Module 2. Module 1 focuses on inclusive understanding of CRPD and analysing key development sectors from a CRPD perspective. Module 2 focuses on applying this understanding and analysis via the diverse advocacy routes.

The secret ingredient of the Bridge CRPD-SDGs training curriculum is the participants themselves as they bring the subject knowledge and the drive to learn and contribute. When asked about the participants’ expectations from the Bridge CRPD-SDGs Kenya training, Ashura Michael, WFD-IDA Fellow from Kenya, said, “Bridge CRPD-SDGs training is a great learning platform and to understand better how to develop new policies related to the UNCRPD. It is interesting to learn how to engage with both the government and the DPOs effectively to implement the CRPD.”

Another participant, Jane Waithera of Positive Exposure (Kenya), said, “the Bridge CRPD-SDGs training provides practical application of UNCRPD and SDGs in the day-to-day lives.” The main motive of this Bridge CRPD-SDGs training is to make sure that persons with disabilities participate equally and take part in reaching Agenda 2030 and the CRPD.

One of the lead facilitators, Fatma Wangare from Inclusion Africa, described the Bridge CRPD-SDGs training as “an Aha! moment for advocacy advocates from disability organisations in Africa.” Familiarizing the participants on the need to have advocacy from a rights-based perspective, she added, “there’s a need to have awareness about one’s needs and rights and to make sure that everybody is counted and budgeted for.”

The Bridge CRPD-SDGs curriculum is built to support DPOs to make the most of the SDGs’ momentum. During the seven days of the training, the participants engage in role plays depicting emotional narratives about the challenges they face in their day-to-day lives and discrimination from their own family, friends, society and legal system.

The team of facilitators for Bridge CRPD-SDGs Kenya include:

Elizabeth Ombati (Kenya) – ADF DPO Engagement Officer;
Alradi Abdalla (Sudan) – a Bridge CRPD-SDGs ToT Officer;
Fatma Wangare (Kenya) – Inclusion Africa;
Michael Njenga (Kenya) – the Executive Director at Users and Survivors of Psychiatry in Kenya;
Jane Akinyi (Kenya) – Bridge CRPD-SDGs Facilitator;
Kato Mark (Uganda) – Fellow WFDB-IDA;
Peter Ochieng (Uganda) – IDA Youth Fellow;
Agnes Abukito (Uganda) – Fellow WFDB-IDA.

The newly-formed ADF team is participating in the Bridge CRPD-SDGs Kenya and related events!

Abebaw Abebe and Ousmane Ali (Project Managers), Anika Sharma (Communications Officer) and Berhanu Kifle (Finance Manager) are following the Bridge CRPD-SDGs Kenya Module 1, taking the opportunity to meet with participants and facilitators from Ethiopia, Kenya, South Sudan and Uganda. The team is also meeting ADF members, key stakeholders, and partners, such as UDPK, Inclusion Africa, USPK, UNICEF, OSF, and UNHCR.

Read here about Bridge CRPD-SDGs Kenya Module 1 (PDF Version)

For any further information, please contact ADF’s Communications Officer, Anika Sharma.