Lessons from 20 years of CRPD Advocacy: How do we rethink partnerships between international organisations, governments and advocates to achieve change? (COSP19 Side Event)

Let's see.
In honor of everyone who's present, I know we're a few minutes late, but we want to start I want to say something that somebody warned me that apparently there's something internal here with the captioning system that it is not working and it's not dependent on us.
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Never mind.
I prefer to be way.
I prefer to be wrong this way than the other way around.
I Well, distinguished guests and delegates, thank you for being here today with us.
I would like to welcome you to the side event.
We are talking about lessons from 20 years of CRPD advocacy and how do we rethink partnerships between international organizations, governments, and advocates to achieve change.
My name is Matias Duke.
I am the global advocacy lead at the Leprosy Mission International, and it is my pleasure to chair the side event, which brings together perspectives from across government and civil society.
We are all here today because we want to move or to continue to move the CRPD from theory into practice globally.
But the reality is that Governments will not achieve this on their own and also not civil society or advocates.
And so we want to have this goal altogether to rethink and to reframe our partnerships, not because they are broken, but the closer we get to perfect, the more positive change we will see for persons with disability.
Collaboration is crucial.
Around the table with me here are individuals who have put in some real hard work in these last 20 years or maybe even before that.
They have learned some lessons about how our existing partnerships can flourish and also what we need to do differently.
We have tasked them with sharing insights that might make the next 20 years of the CRPD a success with partnerships forged for endurance.
I With me, we have quite the panel.
We have Rana Al Jaziri from the first she's the first social affairs officer and head of the disability portfolio at UN ESQ.
She will be joining us via video because she had some flight issues.
We have Ana Carla Pira it's you.
Okay.
We have Imaguada Palincia Pirro from the European Commission.
I Good thing.
We're thinking on our feet here.
We have Isadora, Rodriguez Nascimento Santos, National Secretary for the Rights of Persons with Disabilities for the government of Brazil.
We have doctor Josan Dixie.
Am I butchering that Gi.
There we go.
She's the Director at the Directorate for Disability Issues for the Government of Malta.
We have Rhoda Garland, who's the Commissioner for the Rights of Persons with Disability in Malta.
Have Hannah Lorman head of policy.
No.
Did I say that? Okay.
We have Gertrude instead of Hanna.
Great.
Claude, advocacy Manager of Sightsavers.
Thank you so much.
We have Blandin Punon who's the advocacy Deputy Director at Humanity and Inclusion, and we have someone from Transforming Communities for inclusion.
Yes.
Chris Hansen.
Chris Hansen from Transforming Communities for Inclusion.
Then we have Margaret Henry from the newly formed Papua New Guinea Organization of Persons affected by leprosy.
Before we hear from this excellent panel, however, we would like to hear from our co sponsors.
We will hear from you and EsQA first and that will be a video, Tim? As of Persons with Disabilities, colleagues from civil society.
Good afternoon.
These are welcoming remarks on behalf of UNESCO.
Excellencies, distinguished delegates, representatives of Organizations of Persons with Disabilities, colleagues from civil society, the private sector, ladies and gentlemen.
Would like to welcome you today to this event and it's a privilege to address you today on the progress achieved across the Arab region in advancing the rights and inclusion of persons with disabilities under the framework of CRPD.
Over the past years, the Arab region has witnessed meaningful and encouraging developments in disability inclusion across our 22 member states governments, organizations for persons with disabilities, civil society actors and regional institutions have worked together to strengthen legal frameworks expand social protection and place disability rights more firmly within national development agendas.
Today, all Arab states are parties to CRPD, reflecting regional commitment to dignity, equality, and participation.
This commitment has increasingly translated into concrete reforms.
Many countries in the region have adopted or revised disability legislation to align more closely with the human rights model of disability embodied in the convention.
We have also seen notable efforts to mainstream disability inclusion in national strategies related to education, employment, health, digital transformation, social protection, and sustainable development.
The Arab region has additionally demonstrated resilience and solidarity in difficult contexts.
Disability inclusion and humanitarian response have gained increasing attention in conflict affected and crisis affected settings.
While significant challenges remain, there is growing awareness that emergency response, recovery, and reconstruction efforts cannot succeed unless they are inclusive of persons with disabilities from the outset.
At the same time, we must we must really recognize that implementation gaps persist.
Many persons with disabilities in the region continue to face barriers in employment, education, mobility, political participation, and access to justice.
Women and girls with disabilities, refugees with disabilities, and persons with psychological, intellectual disabilities often experience compounded forms of exclusion.
In some contexts, stigma and outdated approaches to disabilities continue to limit opportunities to full participation in society.
These challenges underscore the importance of strengthening regional cooperation.
No single actor can achieve disability inclusion alone.
Effective CRPD implementation requires collaboration between governments or PDs, the private sector, academia, international organizations and development partners.
Regional cooperation allows us to share experiences, exchange promising practices, and build institutional capacity and avoid working in isolation.
Government plays a central role in establishing the legal and policy framework, allocating resources in line with the Berlin Amman Declaration.
The private sector also has a vital role.
And here, we have to mention the accessibility of digital platforms, innovation that are essential to sustainable development.
Across the region, we're beginning to see encouraging examples of companies investing in accessibility, inclusive employment, and assistive technologies.
These efforts should be expanded and supported through incentives partnership, including regional and global partnerships, and awareness initiatives.
The economic empowerment of persons with disabilities is not merely a human right.
It's a fundamental driver of development and prosperity.
Neglecting this group represents a significant loss of individual talent and potential.
And In ESQL we estimated approximately the loss to national economies at approximately 28 billion annually in the Arab region.
So not taking advantage of this huge potential and talent.
Of course, regional platforms can further strengthen cooperation by facilitating dialogue between stakeholders and promoting harmonized approaches to accessibility standards and disability, inclusive data systems, and employment framework.
In that context, EsquiA is launching end of 2026 in partnership with the League of Arab States, the Arab Region roadmap on the economic empowerment of persons with disabilities.
This is the first Arab instrument that includes detailed actions towards cooperation and regional collaboration in that field.
Greater South South cooperation within the Arab region can also accelerate progress by enabling countries to learn directly from one another's experiences and innovations.
We capitalize on the role of regional institutions such as ESCOA EU, and others in acting as convening powers as we continue working together governments, OPDs, the private sector, regional institutions, and international partners to ensure that CRPD is translated into tangible progress for all persons with disabilities throughout the region.
I wish you luck in this event, and I think with the panel presentations, we'll learn more about what worked, what did not work, and hopefully we can forge a path towards greater equality and participation for persons with disabilities.
Thank you.
Thank you.
We will now hear a short intro from Imagoa Placencia Perreo, the senior expert on disability at the European Commission.
Oh, dear.
Good afternoon, everybody.
Let me start by saying that when our colleagues from Malta approached me to sponsor this side event as European Union, I really accepted without hesitation.
I think the importance of discussing and sharing information on how we work together as international organizations, governments, and advocates that represents persons with disability is really at the heart of the convention.
As we celebrate the 20th anniversary of the CRPD, it's important to recognize one clear reality, and that is that progress on disability rights has only been possible because persons with disabilities and their respective organizations have been at the center of advocacy, policy making, and monitoring efforts.
In the EU, the guiding principle of the participation of persons with disabilities is at the heart of our disability policies, both internally and externally.
In these times where we have been hearing throughout this conference about cuts, lack of support, insufficient financing, we see that this is hitting the organizations of persons with disabilities in a way that is hindering their work to contribute to the implementation of the convention.
So it is really for me a privilege to be able to be in this forum in which we're going to be sharing not only how we involve persons with disabilities as focal points for implementation of the convention, respectively, those of you that represent governments, but also how this is done in other activities that government do like diplomacy, humanitarian action, development cooperation, and multilateral engagement.
With this, I really welcome also you to this side event and I look forward to share with you the way that the European Union involves and engage with persons with disabilities and their organizations, and also to hear from all of you how you are doing it in order to learn and advance on implementation of the convention.
Thank you.
Thank you.
And last but not least, we want to hear from Ambassador Natasha Milli, permanent representative of Malta to the UN in New York.
Thank you very much, Chair.
I shall be very brief because, of course, it's my colleagues who are in Malta working with the commissioner and working with the ministry for inclusion that have more to say, but I wanted to be here to show our support to the work that is being done, to welcome you all, and to say that, of course, we're here to celebrate the 20 years of the CRPD.
A lot has been done, but we have to keep on working because a lot remains to be done.
I think we all agree that the history of disability rights is one of hard won progress.
The 1975 UN Declaration on the Rights of disabled persons reflected a medical model defining disability as an individual deficiency, unfortunately.
This was in stark contrast to the social model already being championed by organizations such as the Union of Physically Impaired against segregation, which held that it is society which disables physically impaired people.
Divergence captured the absence of the very principle that would later become central to the CRPD, nothing without us.
When persons with disabilities were finally given a seat at the table, that social model was enshrined in the convention.
Dear friends, the lesson for partnerships is clear.
They must be built on co production, presuming competence, and genuinely learning what partners need rather than making decisions on their behalf.
So my country, Malta has increasingly embraced the social model of disability, ensuring that the administration works with beneficiaries to design and deliver solutions.
And we are delighted to bring today together distinguished panelists from international entities, governments, and the quality bodies to discuss such crucial mechanisms today.
But most importantly, we are honored to have persons with disabilities and their organizations around this table and at the center of the discussion to shape the way forward.
So we cannot and should not set the agenda without you.
Thank you all for being with us and I look forward to a very, very good discussion.
Thank you, Chair.
Thank you to all of our sponsors, and we move on to the topic of 20 years of CRPD engagement in the Arab and European regions and ambitions for the next 20 years.
Que, quite a range.
First, we want to see another video of Ronia answering this question.
Good afternoon again.
I would like to take these 5 minutes to discuss what worked, what did not work 20 years following the adoption of CRPD.
Of course, I'd like to start off based on my personal experience comparing.
I've worked for the last 20 years on CETO and of course, the two instruments, whether CETO adopted in 2079 and CRPD in 2006, definitely have the common features of setting the framework, the international framework, and leading the global movement of rights.
And this really helps governments have the legislative framework in place and the institutions at the national level.
Now, comparing both pathways, my experience that disability rights in the Arab region is less political, meaning governments have the political will.
There are no reservations.
They are fully in for promoting that right, which is definitely positive, but, of course, that's not enough.
I'm going to mention what worked, what did not work.
Basically, I will try to highlight some of these, uh, I'll start with discrimination.
First, discrimination is still quite present, whether in legislation or in the mindsets.
ESCA has recently finalized a study throughout the Arab region, a huge survey that targeted private sector employers.
Unfortunately, the findings highlight still discrimination and preconceived ideas about the role of persons with disability, whether in employment or entrepreneurship.
And to address that, ESCA launched many webinars that display success stories of persons with disabilities in employment and entrepreneurship, trying to sensitize employers.
We've also worked for so many years with partners and OPDs on inclusive employment capacity building for targeting the private sector and, of course, governments and along with our partnership with OPD.
Um, even during the conflict that is still taking place currently in the Arab region in different parts, we've launched media campaigns to showcase the success stories and the active role of persons with disabilities and OPDs in the distribution of food, doing needs assessment in refugee camps or whether in shelters.
Really showcasing their active role during CFIt situation, not just as mere victims of war, also trying to change preconceived ideas.
Now, I think the second challenge I would like to talk about is this disconnect between the stakeholders.
Mainly the private sector is completely disconnected from the work of OPDs and governments when it comes to the rights of persons with disabilities, notably economic rights.
Here it's really a huge area that we're still a long way to really forge that partnership at that level.
But ECUA has been really focusing on the economic rights of persons with disability through the convening power and always trying to bridge trying to have these three stakeholders, private sector, governments and OPDs work together in our intergovernmental meetings.
We've also launched in October 2025, last year, along with IO, the Arab Inclusive Employment and Entrepreneurship Compact.
It's a letter of intent that brings together private sector, governments and OPDs on inclusive employment and entrepreneurship.
So far we have more than 65 companies part of that, and four member countries, which are Kuwait, Lebanon, Jordan, and now Oman hopefully.
So these are some of the efforts that we're trying to do to bridge that disconnect.
They're also working a lot on accessible platforms such as the Josur Escrow platform, and depar which are targeting the entrepreneurship, the private sector, and there are job matching platforms.
They are completely accessible, and we're really targeting trying to push forward inclusive employment.
And we have now a new platform, a digital platform on assistive technologies.
It's the first Arab platform in Arabic.
About assistive technologies that could help an independent living and economic empowerment.
Finally, I just want to maybe end this with the issue that I think the main theme of today's meeting, which is cooperation, whether at the regional or global level.
Regional cooperation is very important.
As mentioned earlier in my welcoming remarks, we are launching end of 2026 with the League of Arab States, the first Arab Instrument on economic empowerment for persons with disabilities that highlights regional cooperation.
So basically, what can we do as a region to push forward that right? It would be the first one that has detailed actions.
Towards bridging the gap between OPDs the private sector, and governments and ending discrimination, hopefully to move forward with an increased level of employment and entrepreneurship.
But not only that, because rights are interconnected.
So basically economic, social empowerment, but also civil cultural rights, political rights.
Thank you so much.
Thank you so much.
Thank you.
And on the same topic, we also want to hear from Imgula again.
Thank you.
Thank you very much.
I will share now how we engage in the European Union with persons with disabilities and their representative organizations in order to shape and develop EU policies that are implementing and are aligned with the EU and CRPD.
This matter really is very important because in the union, there are about 90 million persons with disabilities.
Globally, we know is more than 1.3 billion persons with disabilities.
Around 16% of the population has disabilities.
Yet in the union, and I think this is also globally, persons with disabilities continue to face disproportionate high risks of poverty, exclusion, discrimination.
And they have lower participation in employment, about half persons with disabilities, half are employed in the European Union and about a bit less than 30% remain at poverty risk or social exclusion.
This is why to remedy those breaches, it is so important to involve and to partner with organizations of persons with disabilities and civil society as an essential element for the implementation of the CRPD.
This is well reflected in the European strategy on the rights of persons with disabilities that was launched in 2021 up to 2030.
Now this year, we issued a reinforcement and enhancement of that strategy to work on the last five years and achieve the objectives that we have set.
These documents reinforce the commitment to have structured dialogues with persons with disabilities and the representative organizations and to ensure their participation in the political and legislative processes and support their work financially and institutionally.
Shape and I will be able now to share some of those instruments that we are using to achieve this goal.
First, I would like to mention the European Disability platform.
It is a unique platform in which we bring it together, not only the European Commission as a focal point for the EU in the implementation of the convention, but the focal points of all the member states together with major disability organizations that work and operate at European level.
These organizations are financially supported through framework partnerships agreements and operating grants.
The European Commission provides substantial financial support to these OPDs and civil society.
For example, last year, these major organizations got about 8 million euro for operating at European level.
The intention is to hear their voice and to empower them to independently being able to express their views in this forum.
This support helps to strengthen their advocacy, capacity building, awareness raising, and participation across the disability movement.
It supports organizations representing the whole diversity of persons with disabilities in an organized manner that they themselves take care of.
It includes also persons, for example, with psychosocial disabilities and non visible disabilities as well as more traditionally financed organizations of persons with sensory disabilities or physical and motor impairment and persons with intellectual disabilities.
Now, let me say that beyond this financial support, these organizations are empowered to participate and contribute to consultations on policy matters and legislative measures and engage in a dialogue with the public authorities and the administrations, including in decision making processes.
These are targeted and constructive dialogues that we organize.
Their expertise is really found to be essential in shaping the policies, whether they is about mainstreaming accessibility, ensuring that employment measures target their needs, that they support independent living, that education policies remain inclusive, and that digitalization, transport, and democratic participation is accessible for persons with disabilities.
The enhanced strategy strengthen the approach by placing greater emphasis on implementation, on accountability, and measurable impact.
Because we have seen that still these gaps needs to be reduced and we need to make them visible.
It also contains this strategy many calls for action directed to member states because only working together we can have through this joint work, we can have solutions to close those gaps and achieve the objectives of the convention.
Let me turn to the global agenda where the EU is also increasingly integrating disability rights into external action.
Development cooperation, humanitarian aid is also being more and more getting disability mainstream.
Disability rights are regularly addressed in human rights dialogues with partner countries and increasing mainstream EU funded programs worldwide.
For example, during 2024, 2025, disability rights feature prominently in dialogue with its partners, including the African Union, Brazil, Indonesia, South Africa, Ukraine, and many others.
The intention is really to make this a matter of cooperation, but also to empower disability organizations at local level so that they can also advocate for their rights there.
Let me also say that the EU has strengthened the monitoring of disability inclusion in external funding through the use of the OECD DAC marker.
And for example, in 2024, almost 40% of newly funded EU external development programs included disability mainstreaming to some extent compared to 26% in 2021.
So we are increasing, we're not yet there.
It needs really to be a figure much higher.
The EU also supports organizations of persons with disabilities initiatives globally, including in humanitarian contexts, recognizing that persons with disabilities must be directly involved in preparedness, reduction, emergency response efforts, and many others.
Through these EU funded programs, we are also supporting disability inclusive education in community based inclusion in partner countries and crisis settings.
For example, we have actions ongoing in Uganda, Nepal, Morocco, Nigeria, and Bangladesh.
This reflects our commitment to the principle and obligation, let's not forget that this is an obligation for all state parties to closely involve and consult persons with disabilities and through their organizations in the work that we are doing and we do so in the EU external action.
At the same time, and I am finishing, we recognize that important challenges remain, including ensuring sustainable funding for DPOs in the EU but also outside the EU, strengthening accessibility and representation, and ensuring participation of underrepresented groups of persons with disabilities.
This is why partnership with OPDs and civil society remains essential for the next phase of the implementation of the convention.
After this 20 year celebration, we really need to reflect how we can improve these participations and how we can empower better organizations of persons with disabilities to be independent actors in the implementation of the convention.
Only together we can ensure that disability rights move from commitments to tangible improvements in the daily lives of persons with disabilities across Europe, but also around the world.
Thank you for your attention.
Thank you.
And last but not least, on the same question we want to hear from Dnara Dilla Bakova.
She's an officer for Inclusive Political Participation at the Office for Democratic Institution and Human Rights, and also at the Organization for Security and Cooperation in Europe, please.
Thank you very much for the question.
I would like to start by saying that our organization, ODR works across 57 OC participating states on democratic governance, inclusive political participation, human rights, but also supporting and promoting rights of persons with disabilities in political and public life.
In that case, we mostly work on implementation of Article 29 of CRPD and advancing the political participation.
Our disability inclusion work focuses on political participation, disability inclusive parliaments, and strengthening cooperation between governments, democratic institutions, but also organizations of persons with disabilities.
Based on our experience of working across OEC region, including European countries, Eastern Europe partnership countries, the Western Balkans, I would like to identify five practical and replicable priorities for strengthening partnerships between governments and Organization of Persons with disabilities for the next 20 years.
So first is institutionalized consultation with organizations of persons with disabilities.
Partnerships are strongest when consultation is regular, predictable, and also built into the policy making processes rather than taking place only occasionally or around some specific legislation.
It helps move from symbolic participation to a more meaningful and here I would like to use one of the example of Montenegro that established a working group at the parliament working together with parliamentary staff, members of Parliament, but also organizations of persons with disability in conducting assessments, disability inclusion assessment of the Parliament that is conducted based on newly comprehensive or methodology.
Second is to focus on practical accessibility measures and design them together with organizations of persons with disabilities.
Here, I'm proud to say that ODR, we have an advisory panel of persons with disabilities on promoting political life and this panel is consists of ten experts who have expertise, knowledge, and lived experience because we need those advices, we need this guidance from people who know best, and therefore, we are very proud and excited that we have this panel.
This year, we're going to have a second cohort of this panel.
One of the products of this panel was a at the Dublin recommendations that were adopted in 2023, and they include such examples such as accessible polling stations, easy to read information, sign language interpretation, braille and accessible digital communication.
Many of these measures have significant impact on political participation.
Our experience also shows that accessibility measures are most effective and sustainable when organizations of persons with disabilities are involved from the beginning in identifying barriers, testing solutions, and monitoring implementation.
Third, is to move beyond viewing disability inclusion only through the lens of representation.
Representation is indeed very important, but partnership should also focus on participation in decision making and oversight.
Persons with disabilities should be involved not only beneficiaries of the policies, but also as political actors, advisors, and elected representatives.
Here, I think we have a good example in the room with us.
It's a commissioner for CRPD from Malta, Rhoda Garland.
I think it's one of the example when you have an advisor, when you have a person within the institution that helps in promoting and advancing CRPD and disability inclusive policies.
Fourth is to invest in long term capacity building on both sides.
We all know that governments often need practical guidance on implementation CRPD, while at the same time, organization of persons with disabilities needs sustainable opportunities and resources to engage in political and public life.
OR experience shows that joint trainings between government representatives, parliament and organizations of persons with disabilities can help build trust and long term cooperation.
The fifth is strengthen the role and sustainability of organizations of persons with disabilities as equal partners.
Effective cooperation requires supporting organizations of persons with disabilities not only to participate in consultations, but to engage consistently and meaningfully in policy making, monitoring, and oversight processes.
This includes ensuring accessible funding opportunities Early involvement in legislative processes and drafting and recognition of the expertise that persons with disabilities and organizations of persons with disabilities brings through the Lt experience.
In many contexts throughout the OSC region, strong partnerships emerge from sustained dialogue, trust, and the shared ownership of the reforms.
In conclusion, I would like to say that ODir's experience across the OEC region, including European countries, show that meaningful partnerships between governments and civil society is not only possible, but it's actually essential for advancing CRPD for the next 20, 30 or 50 years.
The most sustainable approaches are those that place organizations of persons with disabilities at the center of decision making and policy making.
Focus on practical and inclusive solutions and build long term cooperation based on trust, cooperation, and shared ownership.
Thank you very much.
Thank you.
Now we want to hear about reparations for persons affected by leprosy, a successful government civil society partnership from Isadora Rodriguez Nacmento Santos, the National Secretary for the Rights of Persons with Disabilities in Brazil, and she will be on Channel one.
She's going to speak in Portuguese and we will have translation.
Bata Good afternoon, ladies and gentlemen.
I would like to begin by thanking you for the invitation to participate in this important event and for the opportunity to share the Brazilian experience regarding memory reparations, and the human rights of persons affected by Hansen's disease in this very important event, thinking of persons with disability and persons affected by Hansen's disease.
Our convention is a basis of the Brazilian law, including and we have a national security.
It's a transversion plan in different areas and involves different ministries of social economic and cultural rights, rights to work, to culture, access, and to technological features, communications and architecture.
It's a big effort from Brazil to build public policies with participation, also with persons with disability, and we have spaces for public hearings.
Today we are in the conference with civil participation through representation of our National Council for the rights of persons with disability.
When it comes to persons affected by Hansen's disease, I would like to say that it's an honor to represent Brazil in this discussion, to reflect about injustices of the past, but also the commitments that we have in the present to build more inclusive, just, and respectful societies for human dignity.
My name is Zorneu.
I am a National Secretary for Peoples with deficiency in Brazil.
I am a black woman, I have black hair and I'm using blouse.
That is reddish, black pants and bringing a little bit of our experience in Brazil when it comes to reparation policies for persons affected by Hansen's disease, especially in the 20th century and compulsory isolation, I would like to say that many Brazilians were separated from their family and couldn't have collective a living because this was a violation of their rights based on state policies, based on fear and stigma about the disease, even though Hansen's disease has had a cure for many years in treatment, these practices are still present in the lives of people who are affected and their families and for that reason, Brazil has developed a specific reparation policy to recognize and preserve the memory of these violations.
This policy is to recognize the responsibility of the state for damage caused to victims and to guarantee that similar experiences do not repeat in the future.
Memory is very important in this process, and we have to recognize histories that we're not seeing for many years and to register suffering experiences and also fights and also overcoming and also preserve the history for future generations.
And in the same way, reparation is not going to be limited to financial compensation, but also public recognition of injustices and the state has to repair those violations.
Another element is stigma.
Hence disease, maybe it's one of these diseases that are more marked by stigmas in this history, even though we have advanced scientific and medical uh, advances, which are important.
A lot of people are still victims of discrimination, and they have to face barriers to exercise their sing.
Stigma affects opportunities of work, family relationships, social participation, and access to services.
In many cases, The impacts will go through generations.
So these reparation policies have to walk along awareness, education, and also fight against discrimination.
In this sense, the Ministry of citizenship, human rights is developing a national campaign to fight against discrimination of persons with a visibility in persons affected by Hans' disease.
We want to encourage access to information and to cure and also to give visibility of reparation public policies.
We also have been making efforts throughout the years that are very important.
And from 2007 through 2026, more than 10,000 individuals submitted to compulsory isolation were repaired, had reparations, and they were compensated.
And besides the country is developing initiatives geared towards preservation of memories of the old colony hospitals and the statements of persons affected directly by these policies.
These statements were possible due to a strong a partnership between government and the socialists and civil society, persons victim of Hans' disease were very central to this agenda.
They gathered visibility to the agenda and defended the recognition of rights of victims.
This cooperation demonstrates that public policies come up when the state's technical expertise and the knowledge of people who are directly impacted and also the Brazilian government in UNSCO that are supporting these reparations, preservation of history, memory, and also fighting against stigma of persons with Hans disease.
There are other rights that are important to guarantee that all the persons who are elect who are qualified to be to receive repair, they should be reparations, they should be they should have access to those in public service.
The second challenges to fight against stigma against Han's disease.
There's still historic stigma and that really prevents a lot of persons and individuals to participate fully in society.
We need to effort of governments, public institutions, and international agencies and private the private sector and it demonstrates that we can recognize the historic effects and we can establish a culture of human rights based on dignity, memory, and justice, more than just looking at the past actions.
These actions help us to build a future in which nobody is excluded, segregated, or private or do not have their prevent people not to have not to have their rights exercised.
Thank you so much and I hope this discussion will strengthen international cooperation and that they will advance the promotion of rights of persons with disability and Hansen's disease.
Thank you very much.
I would like to say that for Brazil to preserve the memory is really to fight against Sigma and these dimensions are in should not be separated to the commitment that we should have to human dignity.
Thank you so much.
Quickly because so many good things we're hearing, we're running out of time a bit.
Nothing without us.
The implementation of general comment number seven in Malta from doctor Joan and Rhoda.
I don't know who wants to go first.
Yeah.
Please.
Good afternoon, distinguished colleagues and friends.
20 years after the adoption of the Convention on the Rights of Persons with Disabilities, we have much to celebrate.
The CRPD transformed disability from a welfare issue into a human rights issue, strengthening the voice and participation of persons with disabilities worldwide.
However, experience has shown that legislation alone does not create inclusion.
Real change happens when international organizations, governments, civil society, and persons with disabilities work together as genuine partners.
Malta's recent reforms illustrate this clearly.
A key example is the establishment of the Engage Committee through Article 6 of the UNCRPD Act, Chapter 627 of the laws of Malta.
Engage is Malta's principal mechanism for the active participation of persons with disabilities in policy and legislative development.
The committee ensures that participation goes beyond consultation and enables close, continuous involvement in decisions that affect people's lives.
It brings together persons with disabilities, representatives of the National Disability Federation, Academia, and the National Disability equality Body called CRPD, ensuring that the principle of nothing without us is translated into practice.
Engage regularly reviews proposed legislation, policy initiatives, and other matters affecting the disability sector before they are presented to the Cabinet.
Of ministers and to Parliament.
It can also propose matters for consideration of government to be further discussed through Malta's UNCRPD National coordination mechanism.
This mechanism maintains close liaison with Engage and they regularly refer matters for each other's attention.
Engage also examines developments at international and European Union level.
Through such mechanisms, disability perspectives are embedded directly into decision making and policies are informed by lived experience demonstrating that meaningful participation must evolve into genuine co creation.
Another important initiative is Malta's work on access to justice for persons with disabilities.
This is a collaborative effort being led by the Maltese Justice Ministry alongside the Inclusion Ministry, with the technical support of OECD, the European Commission, Louis Galway, and critically persons with disabilities, and their representative organization at every stage from design to implementation and monitoring.
It aims to modernize systems that have long been inaccessible while aligning with Malta's commitment under Article 13 of the CRPD.
In parallel, Malta has also strengthened its legal framework.
Including through the introduction of supported decision making via the Personal Autonomy Act and expanded protections against hate crime and hate speech.
Equally important is ensuring that participation processes themselves are accessible.
Malta has prioritized the use of plain language and easy read formats in public consultations alongside accessible meeting formats and inclusive online tools so that all individuals can meaningfully contribute.
Looking ahead, partnerships must become more inclusive, accountable, and collaborative.
International organizations can support dialogue and share good practices.
Governments can create enabling frameworks, and persons with disabilities must remain at the center of all decision making.
In conclusion, the next 20 years of the CRPD should not only focus on implementing rights, but on strengthening the partnerships that make those rights a reality.
Thank you.
I was going to start by telling everybody about what the CRPD in Malta do.
CRPD incidentally is Commission for the Rights of Persons with Disability, which can be a bit confusing.
But our commission basically is a national equality body.
We are an independent monitoring mechanism for the UN CRPD, and our remit covers areas such as investigation of disability discrimination cases, ensuring compliance in the built environment with our access for all design guidelines, enforcing blue badge parking cards which are used by disabled people in the EU, conducting research and projects, and also undertaking awareness raising and campaigns, and also providing disability quality training by a group of disabled employees that work with us and to thousands of people in Malta every year.
So how do we hear the voices of disabled people? The CRPD Council is made up of OPDs and NGOs and other stakeholders within the disability sector.
I also have, so I get their voices whenever we have council meetings and we are discussing issues within sector.
I also have almost 50% of my employees.
That's 22 out of 50 disabled people with different impairments.
I have everything under the sun who believe me, are very keen to give their opinions on almost anything in extraordinarily detail whenever I ask for it.
I get a lot of advice from them as well.
We have a consultative committee of persons with intellectual impairments.
They do an amazing job.
They set their own agenda.
They have their own issues that they want to discuss.
They call in politicians who almost always come in thinking that they're in for an easy ride and leave with their tails between their legs, realizing that disabled people do have opinions and even people with intellectual impairments are very irritable about certain things that they're doing and what changes they want to be made in order to make their lives better.
We also have consultative committee.
In order to plan for the future, we have a young people's Disability Rights forum where we are training young disabled people in order to be able to give them the skills that they need to be able to advocate for themselves, to give them an understanding of the rights that they have and the elements of the CRPD that they should be fighting for and they discuss issues that they also think are useful in Malta.
I have a disability business forum which looks at employment issues within Malta and makes recommendations about what needs to be done to improve either disabled people's access to employment or from the employer's perspective, what the government needs to do in order to make it easier to employ disabled people.
The most recent addition we have was the Disabled Women's Committee, where I have a group of very enthusiastic women and for the first time, we have a group that is multigenerational.
We have women who are in their late teens and we have women who are in their 70s, who are all working together to discuss issues that they think need to be brought up in Malta and to make the lives of women with disability a little bit better.
We also provide advocacy.
We have disabled representatives on government and entity boards who are disabled people.
We obviously have awareness raising campaigns.
We do conferences, and we do webinars.
I have a group of six disabled people with different impairments who provide disability equality training to people all over Malta and in schools, especially because I think if we can get young children understanding the issues of disability and hearing it directly from disabled people themselves with guide dogs and sign language interpreters in tow that make things a lot more enjoyable for them, then these disabled youth will grow up expecting disabled people to be more included in society.
The last thing that we have is obviously social media.
We have newsletters and we have every piece of social media under the sun, my communications manager will be very, very cross with me because I don't know all of them.
But for sure we have Facebook and Instagram, and I think we have TikTok and we have a website, we also try and make sure that we get feedback from disabled people through all of those mechanisms as well.
That's all.
Thank you.
Thank you so much.
To closely consult and actively involve, and we've already heard a bit about that, but to go deeper into that, making a success of the next 20 years, voices from the grassroots and we want to hear first from Gertrude Oia Ffuame, the global advocacy manager of Sightsavers and also a CRPD committee member.
Thank you, Margaret.
Close to consult, as we said, and actively involved, it principles of meaningful engagement are well embedded in the convention itself, as well as in the discussions we have in forums such as this one.
And yet, when we look honestly what is happening on the ground, we see a persistent and trouble gap between principle and practice.
Time and again in my work, such as on the committee, we hear from some of the state parties that they have consulted person with disabilities.
But when we look more closely, it is not systematic, it is not embedded.
State might have invited people with disabilities, but they have not created the conditions for meaningful participation.
Invitation is not inclusion.
I want to speak today about three ways I believe meaningful engagement goes wrong and how we can move forward.
The first is power.
CSS recently conducted some consultation with some women with disabilities.
One moment where stayed with me.
She said, It is not about inclusion and not only about the numbers, but it's about dignity, agency, and equal power.
I believe the questioning of equal power or unequal power is at the heart of why meaningful engagement so often fails in most systems.
There could be power imbalance in more sets between government and civil society and particularly between governments and organizations of persons with disabilities.
There will be power imbalances between large non government organizations and OPDs.
There will be power imbalances within organizations based on age, status, gender, disability type, and many other factors.
Those who seek to engage me in film must first identify these power dynamics and then actively work towards addressing them.
This means moving away from consultation as one off exercise to genuine core design, including all these and personal disabilities as long term partners.
This is not just as a resource, to draw upon when the box needs to be checked, but it means recognizing that lived experience and expertise should not be less valued to technical or institutional expertise.
They are essential to it.
The second, ladies and gentlemen, It's financing, and this is closely linked to power.
If you're asking people to give up their time for free, if you are not covering the cost of a personal assistant, a sign language interpreter, or accessible transport, you are not removing barriers of participation.
You are entrenching them.
Disability activists and OPD members are often committed and passionate and so they will show up anyway.
But that commitment should never be taken for granted or exploited.
Meaningful engagement requires meaningful resources, budget for Participation, and this must be planned from the outset, not added as an afterthought.
Funding for OPD capacity strengthening so that organizations can sustain their engagement over time must be treated as a core component of a serial inclusion strategy, not an optional extra.
The third accessibility moderator is reasonable accommodation and accessibility.
And these are conditions for parting themselves.
We cannot speak about meaningful engagement without speaking about access and reasonable accommodation.
This means physical access to venues.
It means documents and materials and accessible format provided in advance of these meetings.
This meetings should also be held in format and time that people can actually attend.
It means sign language interprets, captioning and communication support as ta and it must go beyond this.
It means creating spaces where people feel safe to speak, where they cannot be nalized, patronized, or ignored, but where their contributions will be taken seriously and visibly shape outcomes.
This brings me to the role of NGOs and relevant organizations.
Ladies and gentlemen, NGOs and OPDs must go beyond project delivery, but there must be genuine partnership that invest in the long term capacity and sustainability of OPDDs.
The transfer of skills and resources that build organization foundation to allow OPD to participate on equal terms and not just when a partner organization requires their input.
Capacity strengthening cannot be a side note.
It must be central to how NGOs and OPDs work together.
As I say this, we have seen in our disability development program, which is now coming to an end, how much more effective we are when OPDs are just not delivery partners, but central to the program itself.
The CRP sets a clear standard.
A 4.3, I think most of us are already familiar, elaborated by general comment seven requires state parties to closely consult with and actively involve persons with disabilities, and this is through the representative organization.
The word meaningful should not be taken that we demand sorry.
The word meaningful should not be decorative.
It demands that we go beyond presence to agency, to power, to resource, and to gene influence.
Thank you.
Next, we want to hear from Blandin Bun, advocacy Deputy Director of Humanity and Inclusion.
I guess I have to be brief given the time.
Thank you, moderator.
My name is Blandin Bunia I'm the Deputy Director for Advocacy Global Advocacy at Humanity and Inclusion.
I speak to you today as a woman without disability, though I am a disability inclusion advocate.
I speak to you today as a representative of an organization with a long history of disability rights advocacy, but it is not an OPD, it's an international NGO.
I wanted to start by this to say, Well, there is no misunderstanding, there is no contradiction in all that.
It's only the expression of solidarity and allyship within a vision of one humanity, basically.
Thank you very much for inviting me for sharing the lessons I tried to learn through my journey to advocate for CRPD implementation from the perspective of an international NGO.
I came down to six lessons, but I will be super short, I promise.
Lesson one, and this would echo what Getsy was just saying.
OPs advocacy and NGO advocacy for disability rights and inclusion are complementary and should be articulated in formal or informal partnership.
As I did say earlier in the civil society forum, I must acknowledge that the achievements of the CRPD and all the progress so far is really to the credit of the persons with disabilities and their organizations.
This progress only existed because persons with disabilities managed to advocate and demand recognition for their rights.
Um, this leadership remains indispensable today to continue holding governments, donors and service providers accountable.
This being said, given the scale of the problems to fix, and we have named so many in these side events and throughout the week, it would be inappropriate and irresponsible to let OPDs bear the burden alone.
OP should not be left alone to combat for accessibility, participation, and equal access to opportunities and services.
We all benefit from a more inclusive society, so we all have a part to play.
We as international NGOs, do not speak on behalf of persons with disabilities, but we can support, facilitate, input, or amplify their voices.
Since the birth of humanity and inclusion 40 years ago, we worked alongside persons with disabilities and OPDs in countries where situations of poverties, conflicts, and disasters are very prevalent.
We've been always working as allies and partners, bringing complementary expertise, resources, and opportunities.
In my view, this partnership between OPDs and international NGOs is also indispensable for our collective advocacy to hope to see more progress for the implementation of CRPD.
So we must continue as I NGOs to forge stronger partnerships with OPDs and advocate together in allyship and accomplicship.
I like this word because basically we are saying by this that we are sharing our strengths, but we are also sharing the consequences of this collective advocacy that we would do.
Bad or good.
So, I have to move on, otherwise, I will not have time.
Lesson two.
My second lesson is that it is very critical that we target our advocacy for disability inclusion on policy forum that will not address disability inclusion otherwise.
The objective is really to mainstream disability rights and inclusion in a broad range of policy issues.
We've been hearing a lot during this week and we I think all agree that disability inclusion must be woven in the fabric of policies from the start, not addressed as an afterthought.
To ensure that as inclusion advocates, we need to be much more proactive to reach out outside the echo chamber, including here.
It will require from us to not only invest our time and capacity uh, in for that are disability rights and inclusion specifics, but also occupy those policy fora, where disability inclusion would not necessarily be talked about unless we are here to make the point.
I like this saying that says if you're not at the table, you may be on the menu.
To avoid that, we need to be occupying spaces that are not naturally drawn to disability inclusion activists.
For example, it was very comforting to see that this long process to claim for recognition of the disability constituency at the UN FCC on climate negotiations have achieved a milestone and there is the beginning of the establishment of an official disability caucus there before we can formalize a disability constituency.
NHR is very proud of having supported IDS led initiative to achieve that.
As HI, to ensure that disability inclusion is addressed in those fora, that is not specific to disability rights and inclusion, we are doing our best to facilitate the participation of OPD representative in different international conferences on various topics.
I have a few examples, but I will not bother you with that.
I just wanted to focus on one that I don't think we talk about much here.
It's disarmament.
My organization is very well known for its work to advocate for the ban of land mines and cluster munitions.
As explosive weapons that are disproportionately affecting civilians.
In these areas where we are very much present, the idea is to always support that survivors that are often also identified as persons with disabilities have a seat at the table and can tell their stories and can influence the decisions that are going to affect their lives.
It's not easy and after many years of trying to do that, it is not yet reflected from the organizers, so we really have to be tenacious and I should salute the courage of those survivors that are doing the job very well.
Lesson three, we must advocate at all levels, local, national, regional, international in an articulated manner to ensure that we can reach out to the broadest audience possible.
Within HI, we are talking of multi level advocacy.
That is about connecting the global, the regional, and the local level of advocates doing the job promoting disability rights and inclusion.
For that, we really need to strengthen our information sharing system within the disability rights movement to allow for information, analysis, evidence, and recommendations to circulate within the disability rights movement from global to, from local to global.
It's very important because each of these level is feeding each other.
As HR.
I will just name the other lessons.
Lesson four is that we really must invest in fostering more cross movement coalitions and connect rights causes in order to level up the volume of our voices.
Feminist movements, human rights activists on other areas are really facing the same kind of barriers as we are facing to make the points.
The last one is something that just take a second to talk about is to mention that our advocacy work is at great risk today because of the context of shrinking civic space that we are in and also the context of defunding advocacy work by NGOs and OPDs.
It's very pregnant.
It's happening everywhere and it's in the context of those massive aid cuts that took place over the last two years.
Um, and I really think that we should also make much more noise about this and please don't hesitate to come to me later and I would share this study that we've produced on the basis of a survey to OPDs about the impacts of aid cuts.
Thank you very much.
Thank you.
Chris, we want to hear from you, but I'm going to ask you to be brief.
I'm hearing that we're being kicked out of this room.
All right.
Sorry.
Yes.
Great.
Thank you for the opportunity to speak on behalf of transforming communities for inclusion.
I'm also a person with psychosocial disability, co director for Intentional Peer Support, a peer support training organization.
I had the privilege of serving on the New Zealand delegation during the drafting of the CRPD.
This was historic because people with disabilities were not simply consulted.
We helped shape the convention.
20 years later, I believe the lesson is simple.
Consultation is not the same as partnership.
My organization was once invited to join a large federally funded project.
On paper, we were a partner, but by the time we became involved, the proposal had already been written, the priorities established, and the funding secured.
We were invited into a project that had already been designed by others.
That is not consultation, it is not partnership.
Users and survivors of psychiatry, partnership also simply cannot mean being invited into systems that continue to rely on force and coercion.
Partnership requires a willingness to listen to change, and to confront uncomfortable truths.
Our second lesson is about resources.
When I was living on disability and raising children, I was invited to participate in a policy consultation to design mental health services.
I often brought supermarket bags to meetings so that I could take home leftover food from lunch to help feed my family.
Around the table were professionals who were paid to be there.
I was expected to contribute my expertise in my own time and at my own expense.
That experience taught me something that remains true today, lived experiences expertise.
If we value that expertise, we must resource it.
If we are serious about the next 20 years of CRPD implementation, I believe we need to involve people with disabilities from the conception of the work to resource participation as expertise and to build partnerships that are willing to share power, learn, and change.
We must help conceive them, design them, lead them, and where necessary, transform them.
That's what real partnership looks like and I'm looking forward to hearing Margaret.
I've cut it short.
Thank you.
Last but not least, Margaret.
I'm also going to ask you to be brief.
Sorry.
Margaret.
This is the statistics that I have shared every time I have spoken at the conference.
Two out of every three women in Papua New Guinea will experience violence in their lifetime.
I want to talk about reframing partnership between governments and civil society from within the perspective of all these era defining within my country.
Because most women face this challenge, but it is women with disability who are facing it accurately.
The problem is one attitude, one of attitudes.
It is considered normal to be violent towards a women, and that is even more true.
When the women cannot communicate easily, cannot leave the house without support, is passive has been less than by most people in her community.
For many women with disabilities, there is those support network, whether to help with daily living to offer emotional care or to ensure financial independence.
Because disability is looked upon so poorly, family and friends are of little help to you.
The consequences is that women with disability become trapped in homes and with abuses.
They often don't have the means of opportunity to ask for help and they did, do they have the willingness to seek support when they are afraid? They will not believe or understood or that is support would even help.
Ultimately, the solution to this problem will be a change attitudes to GBV within the country.
But these attitudes are so entrenched that they will take years to undo and women with disability will probably be the last to feel the benefits of that work.
If we do not pay special attention to their needs, we cannot afford to wait that long.
This therefore is the perfect opportunity to reevaluate the relationship between governments and civil society to help us achieve the CRPD.
It is an Int ideal world, women with disability would have families and friends around them who would be their primary support network.
That is what we want for every person.
But in Papua Ne Guinea with attitudes as they are, this is not happening.
To give you an example, when my first grandchild was born, I was not allowed to hold him because of the stigma and discrimination that surrounds me as someone affected by leprosy.
That is one example, but it shows you how attitudes to disability affects women within what should be their primary support network.
In the absence of this network, I think Government and OPD should be stepping up to the support that women with disability are lacking to effectively become their primary support network.
In practice, that means direct interventions in home reaching out to women with disability to hear directly from them, no matter their communication needs and always in partnership with OPDs and government actors.
It means having justice system That is up to the task of ending abuse.
When my husband hospitalized me with with by attacking me with an X, his punishment was to compensate me about $70.
I fled less than a year later and never went back to him.
Does that sound like justice system that women with disability will have trust in? Do you think they put themselves through the pain of being understood and believed just so their abusers can have a slap on the wrist That would not be the case if OBDs were engaged in encouraging a better justice system.
My hope is that retught partnership between governments and civil society in Papua New Guinea would mean we come together to be the support network for women who have no one else with disability desks in hospitals and police stations, safe houses, and counseling support available everywhere, and a real effort made to identify and come alongside all women with disability, knowing that the vast majority of them are already facing violence but may not tell anyone about it.
This is a lofty goal and I do not expect change overnight, but how can we do nothing for such a large community of people who have experienced so much suffering and what an opportunity for a retort partnership to have a real impact.
Thank you.
Thank you so much, all of you, the panelists.
Thank you to the co sponsors, to UN ESQ, to the European Commission, to the permanent missions of Brazil in Malta, and the CRPD from Malta.
Thank you so much to all of you who participated.
Sadly, we don't have time for questions and I want to ask you to leave this room as quickly as possible so that we allow the others to come in that have generously waited outside.
Thank you.