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Friday, April 5, 2013 is an important day. From this day onwards, the world has 1000 days to meet the commitments it made with the Millennium Development Goals (MDGs). There is a lot of buzz about the #MDGMomentum. This is a good time for people with disabilities to take stock.

At the turn of the century, the world discussed and deliberated on the MDGs. The 8 goals unified the world – governments, development agencies, civil society on key issues like poverty, education, health, gender, environment and so on. However, despite the fact that a substantial percentage of the world’s population (almost 10 percent) was affected by disability, there was no mention of disability in the MDGs – not in the goals themselves, nor in the indicators. This was despite the well-established connection between disability and poverty; the fact that children with disabilities were the ones who got left behind; the fact that women with disabilities were even more marginalised and faced multiple discrimination and so on.

This was as much a reflection on the development world as it was on the disability movement itself.

Although, steps have been taken later on to ensure that disability was taken into consideration in the implementation of the MDGs, it would not be an exaggeration to say that progress has been much below the expectation of the disability movement worldwide.

In the past 2 years or so, talks about the MDGs missing the mark triggered discussions on the post-MDG framework. However, as more and more energy was spent on the post-2015 agenda, there was another school of thought that urged caution, that there was still some time to achieve significant progress. And from Friday, April 5, we still have 1000 days to do so.

Today, the World Health Organisation says that 1 billion people or 15 percent of the world’s population are living with disability. Of this, 800 million or 80 percent live in the global South. People with disabilities comprise 20 percent of the world’s poorest. In this scenario, it is not only imperative that disability is intrinsic to the processes for fulfilling the MDGs to the extent possible by 2015, but also to underline the fact that disability must be a significant part of the debates, discussions and outcomes of the post-2015 development agenda. To do so, it is important that the disability movement deliberate on the following:

Look South: As mentioned, 800 million people with disabilities live in the global South. The MDGs and the post-2015 frameworkmean and will mean the most for these 800 million. Yet, their voices are nowhere in the scene. This has been a disappointment in the larger civil society movement engaging with the MDGs and the post-2015 processes in general. The foreword of ‘Shaping our Shared Futures Beyond 2015: Perspectives from the Global South’ published by Wada Na Todo Abhiyan says: “Among the strongest critiques of the MDGs was that they were conceived in an arbitrary, non-transparent and non-inclusive manner in the global North, without real involvement or ownership from either the poor and excluded populations, civil societies or even national governments in the countries of the global South.”

There is a definite surge in advocacy by organisations from the global South in the post MDG processes and there is no reason why this should not hold true for the disability movement as well. People with lived experiences of poverty, indignity and lack of basic facilities should be talking themselves and not have others talk on their behalf. This is difficult given that there needs to be funds available for leaders from the global South to travel to the meetings and deliberations.

Inclusion of disability in the UN High Level Panel on post-MDGs: Although very late in the day, since the panel is due to submit it report next month (May 2013), it is still essential that the disability movement continue to remind the eminent persons on the panel to not forget disability. However, the last High Level Panel meeting in Bali, where disability found no mention in the official communiqué, has created grave apprehensions.

Engaging with the larger civil society movement in MDGs and post-MDGs: The most common critique of the disability movement has been its alienation from the larger civil society movement, despite the fact that disability is a cross-cutting issue. Now that lessons have been learnt after the omission of disability in the MDGs, there is a huge responsibility on the disability movement to ensure that mainstream CSOs are including disability in their advocacy, so that gender organisations talk about women with disabilities; child rights advocates talk about children with disabilities; and so on.

High Level Meeting on Disability and Development: One of the most significant milestones in the disability movement worldwide will be the upcoming UN High Level Meeting on Disability and Development in New York on September 23, 2013. This meeting will hopefully set the tone for inclusion of disability in the remaining MDG processes and in the upcoming post-MDGs framework. This has been dubbed by many leaders as a’once in a lifetime’ opportunity. Time is of the essence here and it is very important to ensure that the High Level Meeting does not get diluted and that governments take this meeting very seriously and send the highest level of delegation possible. The need to ensure a strong outcome document cannot be over-emphasised.

Connection between the High Level Meeting, Opening of the General Assembly Debate and the Special Event on MDGs: The High Level Meeting on Disability and Development is followed by the Opening of the General Assembly Debate on September 24, 2013 and the Special Event on MDGs on September 25, 2013. Leaders from the disability movement are now looking at the possibility to connect these three very important events. A strong demand that has arisen from some of the key voices in the global disability movement that the outcomes of the High Level Meeting should feature in the speeches and deliberations of the next 2 days.

Engaging with national governments: It is very essential to motivate national and local level disabled people’s organisations to advocate with their governments to take disability issues with the seriousness they deserve. At the end of the day, when the MDG processes in the remaining two years and the post-2015 agenda are discussed, it will be the governments who will either support or oppose based on their country’s priorities. Disability is a non-political issue, by and large. Therefore, chances of it being opposed are less. However, the probability of it not making to a majority of the countries’list of priorities is much higher. Therefore, advocacy at the national level becomes paramount.

Disability as a development issue: The fact that disability is a cross-cutting issue has by and large been well-established. But the new argument put forward by disability rights advocates is that it is not just a human rights issue but also a development issue. Therefore, it needs to be looked at from that lens as well. This is a relatively new thinking but one with tremendous merit. Leaders from the disability movement, especially from the developing world, should be motivated to imbibe this thought and incorporate it in their own advocacy.

Going to the grassroots: Javed Abidi, Chairperson of Disabled People’s International (DPI) firmly believes that disability rights will have to be realised at the grassroots and not in New York and Geneva. This is a valid argument and throws a sense of caution at the sudden, seemingly top down disability agenda and related advocacy. Most disability rights advocates would prefer a mix of bottoms up and top down mechanism, favouring the bottoms up flow. This is where organisations like DPI have a huge role to play. DPI’s strength lies in its unparalleled reach at the grassroots across 130 countries and 5 regions. Most of its members are drawn from the developing world and across disabilities. This also puts a huge responsibility on DPI’s leadership and its members to actively engage in the MDG and post-MDG processes.

Dorodi Sharma is OSD to Chairperson, Disabled People’s International.

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There are huge numbers of young disabled people, and most of them (around 80 percent) are living in developing countries. The basic problem for them is invisibility – they don’t come out of their homes and their parents just hide them away. And within the homes they are losing their dignity because when they need to go to the washroom they have to ask for their parents’ help. Young women with disabilities, in particular, feel this is very difficult.

Secondly, parents treat the young disabled person like a child – they don’t listen to what they want. Parents see the disabled person as special, as someone who needs help. And yes, disabled people do need support, but to help build the capacity for independent living.

There are other barriers too, like the attitude of those who feel that disability is all about the person who’s sitting in a wheelchair or who can’t see or who can’t talk and can’t contribute anything to the community. There are also accessibility concerns – many disabled young people are not getting any kind of access to health facilities or any opportunities for education.

Eliminating these challenges will be a long process and to do that we need to empower disabled people to understand their disabilities. Here a twin-track approach is very important. First, you can motivate young disabled people who can find some kind of understanding about their disability and can take the leadership role. And secondly, their family members, they have to change their mind-set. The media can play a very important role in this by showing a positive picture of young disabled people taking part in everyday life.

I feel that older people who are involved in the disability movement over the last two or three decades have done a lot of good work, but we need to include some young disabled people in these organisations so they can contribute their ideas and share their feelings and experiences. I think it’s very important for young people with disabilities of all kinds to get involved at all levels – from policy and decision-making to implementation, monitoring and evaluation.

Note: This article was published on Global – the international briefing. It can also be read on Young people 

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In the 1980s, a revolution took place in the lives of millions of people with disabilities across the world when they decided that they themselves will take decisions affecting their lives and thereby rejecting the hold that parents and professionals had on the disability sector and its policy and decision making until then. And thus was born the slogan ‘Nothing About Us, Without Us’.

The 80s and the 90s saw a gradual rise in the organisations of people with disabilities, self-advocates who were the front-runners in all the discussions surrounding disability issues. Professionals, parents and NGOs had no choice but to take a back seat. Up until the passage of the United Nations Convention on the Rights of Persons with Disabilities (CRPD).

In my previous blog, I had argued that CRPD is not the gospel that has suddenly dropped down from the heavens. But even then, we do see a spurt of ‘CRPD professionals’ who are now omnipresent. Their mandate is to ‘train’ people with disabilities on implementing CRPD. Never mind the fact that people with disabilities can actually teach them a thing or two about disability and about the rights of people with disabilities!

At all such trainings you will see academics and professionals who have made CRPD their new business. And it is this bunch of so-called CRPD experts who are turning the dynamics of the disability world upside down, taking people with disabilities back to the pre-80s era where we were mere bystanders.

Earlier, we were recipients of charity. Now, we are recipients of charity and their pearls of wisdom. But recipients we were and recipients we are!

This new found exodus of energy and efforts towards Geneva and New York is a direct result of these changes in the dynamics of world’s disability politics. Keeping the focus on New York and Geneva means that these CRPD professionals will decide the agenda, while national, regional, and local issues get relegated to the backburner.

What is very unfortunate is that, this ploy seems to be working. All the money and resources are now being pumped towards work of such CRPD professionals while poor DPOs and people with disabilities are left high and dry. In fact, money to DPOs is now being routed via these professionals. They control the flow of money and thus they control the agenda of the disabled community.

This is imperialism of yet another kind. And the slogan ‘Nothing About Us, Without Us’ remains just that, a slogan. The average, mostly poor people with disabilities are left wondering as to when they let someone enter their life to play God, once again.

Note: This article was published as a blog on the Disability Rights Knowledge Network, hosted by the Commonwealth Connects Portal 

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In my 20 odd years of work in the disability sector in the not-so-popular domain of advocacy, one mantra that has led me is that ‘Information is Power’. This is especially true for those of us who have the privilege to be based in big cities, capitals and places where the movers and shakers who shape policies, operate.

With the coming of the Convention on the Rights of Persons with Disabilities (CRPD), there is suddenly a sense of hyperactivity towards two supposed power centres: Geneva and New York. Everybody who is anybody in the disability world seems to want to be seen there. As our mailboxes incessantly beep with incoming messages with tidings from Geneva and New York, I am apprehensive.

When I see this sudden flurry towards a top down flow of information, it makes me nervous. Communication is neither a top down nor a bottoms up approach. It needs to give equal weightage to both. In this case, however, I dare say it needs to pay more attention to the bottoms up traffic.

CRPD is a great tool no doubt. But what does it say that the disability sector has not known for years. Not much. The right to education, access, information, health, social security, and so on and above all the dignity and integrity of a person with disability is not something that dropped down in the form of CRPD like manna from heaven. We all knew all of this before CRPD and we all know it now. But suddenly, all our energies seem to be focused on what is happening in Geneva and New York, on submissions, on reports, on Committees, on resolutions. While I am not denying the importance of those processes, I am cautioning against neglecting national issues, local issues, and what is happening in our own backyards.

CRPD will not be implemented by either Geneva or New York. CRPD will be implemented by the grassroots persons with disabilities by ensuring that disability is an integral part of their local and national policies. CRPD will be truly implemented when people with disabilities at the grassroots become a force to be reckoned with in their own locality, province and country.

Note: This article was published as a blog on the Disability Rights Knowledge Network, hosted by the Commonwealth Connects Portal 

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Dorodi Sharma – OSD to Chairperson, Disabled People’s International (DPI)

Since the past two years, there has been a lot of buzz regarding the post-2015 development agenda and the inclusion of disability. Much has been written and spoken since the Rio+20 Summit in June 2012 running up to the High Level Meeting on Disability & Development (HLMDD) on September 23, 2013. The Outcome Document  of HLMDD underlines the importance of inclusion of disability in national & international development strategies for realization of the Millennium Development Goals (MDGs); inclusion of disability in the mechanisms leading up to the post-2015 development agenda and for the need to include people with disabilities in these discourses. However, the commitment of the international community to genuinely address the disconnect between disability issues and development seemed missing just 2 days after the HLMDD. The Special Event on MDGs on September 25, 2013 did not find much impetus on disability. Although the Outcome Document of the Special Event (198 KB)   talks about inclusivity; making MDGs and post-2015 a reality for those that have been left behind; and puts special emphasis on cross-cutting issues and multiplier effect; it does not mention disability.

After September 2013, there seems to have been a lull. Not much information has come forward from international organisations working on main streaming of disability in the post-2015 development agenda. This paper is an effort to sum up what has happened so far and the steps from now till the adoption of the post-2015 development agenda.Developments so far

The first significant milestone in the post-2015 discourse was the Rio+20 Summit  in Rio de Janeiro in June 2012. The outcome document titled ‘Future We Want’ contained a clear focus towards sustainable development. It was agreed to work towards Sustainable Development Goals (SDGs) that will build upon MDGs and integrate into the post-2015 development agenda.

In June 2012, the Secretary General’s High Level Panel (HLP)  of eminent persons on the Post-2015 Development Agenda was constituted. This HLP had several consultations and came out with their report  called ‘A New Global Partnership: Eradicate Poverty and Transform Economies through Sustainable Development’, in May 2013.

This was followed by the Secretary General’s report (98.2 KB)   titled ‘A life of dignity for all: accelerating progress towards the Millennium Development Goals and advancing the United Nations development agenda beyond 2015’ in August 2013.

Disability in the post-2015 processes so far

While it is true that disability did find mention in the Rio+20 Outcome Document and the HLP Report, it is critical to look at the mentions in light of the bigger picture. There was no mention of disability at significant places such as goals, targets and indicators. It wasn’t underlined that disability is a cross-cutting issue, like gender, and has a multiplier effect. The inter linkages between disability and inequalities were neither addressed nor highlighted. It would therefore, be safe to assume that the mentions were cursory at best.

It also needs to be said here that the disability movement did make enough efforts to ensure that the issues of the 1 billion people with disabilities are included in the discourse leading up to 2015. This is evident from the fact that there was tremendous excitement in the global disability movement in the run up to HLMDD. However, post September the discourse seems to have lost steam. While, it is true that at the international front things are still churning, it is also equally true that there has been an obvious communication failure with the national disability movements.

From now till 2015

The question that many are asking now is what are the steps from now till then? There are two mechanisms that are currently in motion. These are:

Open Working Group on Sustainable Development Goals

The Open Working Group  on Sustainable Development Goals (OWG) was formed in January 2013 as an intergovernmental mechanism to come out with a set of SDGs. It has a total of 30 seats , which means that a number of Member States share seats. The OWG has had 4 Sessions so far. In the first Session in March, H.E. CsabaKõrösi, Permanent Representative of Hungary, and H.E. MachariaKamau, Permanent Representative of Kenya were elected as co-chairs of OWG.

As the entire focus of the world community was directed towards HLP and the subsequent High Level Meeting on Disability & Development and the Special Event on MDGs, the Sessions of the OWG did not get widely publicised.

The sessions of the OWG are working to conceptualise SDGs and are having thematic discussions. The second Session in April was on conceptualising the SDGs and poverty eradication. The third Session in May was on food security and nutrition, sustainable agriculture, desertification, land degradation and drought; and water and sanitation. The fourth Session in June was on employment and decent work for all, social protection, youth, education and culture; and health and population dynamics.

OWG will have a total of 8 Sessions. The fifth Session (November 25-27) is on sustained and inclusive economic growth, macroeconomic policy questions (including international trade, international financial system and external debt sustainability),infrastructure development and industrialization; and energy.

The sixth Session (December 9-13) will be on means of implementation (science and technology, knowledge-sharing and capacity building); global partnership for achieving sustainable development; and needs of countries in special situations, African countries, LDCs, LLDCs, and SIDS as well as specific challenges facing the middle-income countries.

The seventh Session (January 6-10, 2014) will be on sustainable cities and human settlements, sustainable transport, sustainable consumption and production (including chemicals and waste); and climate change and disaster risk reduction.

The eighth and final Session (February 3-7, 2014) will be on Oceans and seas, forests, biodiversity; promoting equality, including social equity, gender equality and women’s empowerment; conflict prevention, post-conflict peace building and the promotion of durable peace, rule of law and governance.

A Technical Support Team has also prepared briefs  on each of these themes.

Major groups and other stakeholders will feed into this process. Based on the discussions and inputs, the OWG will come out with a proposal for Sustainable Development Goals that will be presented to the 69th General Assembly in September 2014.

High Level Political Forum

The first meeting of the High Level Political Forum  was held on September 24, 2013. Heads of States and high-ranking dignitaries attended this meeting to underline their commitment to continue action on sustainable development at the highest levels. However, it is yet not clear as to how the modalities of this Forum will work and how, if at all, civil society can feed into this process.

The final post-2015 development agenda: Once the OWG submits its proposal in September 2014, all processes that have happened so far will be converged. This includes the HLP recommendations, the Secretary General’s Report, the World We Want surveys, the OWG proposal, etc. There are probabilities that other consultations may be organised before September 2014 by the UN, but nothing concrete has been heard or seen so far. From September 2014 till 2015, the onus will be on the Member States to discuss, debate and finally arrive at a development framework for 2015-2030.

Role of the grass roots disability movement

The discourse on inclusion of disability in the post-2015 development agenda has so far been restricted to New York and Geneva and the international platforms. However, what is increasingly becoming clear is that ultimately whatever development agenda is agreed upon by the Member States hinges hugely on what the National Governments decide as their priorities. Unfortunately, there have been no proactive efforts on the part of the international community to engage with the grass roots national disability movements. This needs to change and needs to change fast if we are truly serious about seeing disability as a cross-cutting issue across all goals, targets and indicators of the post-2015 development agenda.

How do grass roots movements get involved

The grass roots national disability movements need to study and understand the relevance of the discourse on post-2015 development agenda. What the international discourse is acutely lacking in is an understanding of the global South realities. Many governments of the global South have shown apathy towards the MDGs. They have not accepted international markers for development and have preferred to use their own targets and indicators. However, the MDGs are universal in nature and they are not different from what these governments consider to be their nationally relevant goals. For instance, a development goal could be universal healthcare. National governments may not adopt universal healthcare as their own target but may be prioritising schemes related to this goal in the form of free medicines, setting up rural health centres, etc.

The bottom line is many governments and bureaucrats in the global South are baffled by technical language used by international development practitioners. The grass roots movements therefore, have the critical role of breaking down this jargon to simple operational guidelines for local implementation.

Any and all development framework will ultimately come down to negotiations between Member States. Therefore, it will be very short-sighted to not keep the chain of communication with the grass roots movements, especially of the global South where 800 million of the world’s 1 billion people with disabilities live.

So, what can you do

• Keep yourself informed about the processes from now till 2015. Remember, knowledge is power.
• Develop national level advocacy campaigns to convince your governments to talk about disability in all their negotiations regarding the post-2015 development agenda.
• Advocate with your government to include disability in their list of priorities for the post-2015 development agenda.

The key to inclusion of disability in the post-2015 development agenda lies with you. It will not be a viable strategy to attach undue importance to lobbying only in New York and Geneva. Change has to come from the ground.

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For the past two years and more the words ‘post-2015’ and ‘MDGs’ have been critical for development practitioners and civil society. August 18 would mark 500 days until the deadline to achieve the Millennium Development Goals (MDGs). The processes leading upto the eventual intergovernmental negotiations that will determine what kind of a post-2015 development agenda that the world gets, are almost through. Last year saw the High Level Panel on Post-2015 come out with their report and their now famous theme of ‘leave no one behind’ towards the goal of eradicating extreme poverty by 2030. In the past two months, we have seen the culmination of two more processes. The Open Working Group on Sustainable Development Goals (SDGs) and the Intergovernmental Committee of Experts on Financing for Sustainable Development have come out with their final reports.

All these processes will now feed into the Secretary General’s synthesis report that will form the basis of the intergovernmental negotiations.

The development organisations, especially those from the civil society, have so far been mostly focusing their attention towards the processes in New York and Geneva; and other such international platforms. The results have been mixed – some hits and many misses.

The non-negotiables from the civil society have been to have a framework that is based on universality, indivisibility, and inalienability of human rights as the macro frame with specific goals and targets woven into it. There is a growing demand to ensure intersections of factors leading to inequalities and social exclusion be adequately addressed, especially keeping in mind the more vulnerable sections of the populations.

There is also a significant worry that governments from developing countries will never accept the present framework as is being proposed by the OWG report – a framework that is a prescriptive list for Global South countries without spelling out the role of the developed nations. If climate change negotiations are anything to go by, most governments of the Global South will negotiate hard on several issues such as poverty eradication, just governance, transparency, etc.

Amidst all this, civil society needs to re-focus its attention on the grassroots and on national governments, because at the end of the day, it will be the governments of the nations that will negotiate and finalise the post-2015 framework. National development organisations, civil society organisations need to be involved in advocating with their governments to ensure that nation specific priorities reflect the aspirations of the people. This is especially true for movements such as disability.

People with disabilities have so far been left out of the global development agenda. This needs to be corrected if we are committed towards eradicating extreme poverty by 2030. The World Health Organisation and the World Bank say that one in every seven person has a disability. The World Bank also says that 20% of the world’s poorest are people with disabilities. Nobel Laureate Professor AmartyaSen spoke about this connection between poverty and disability in his theory of conversion handicap. People with disabilities not only earn less but they are also unable to convert the income into adequate standard of living because of disability specific costs. The world therefore cannot make the same mistake it made at the time of the MDGs and leave this huge section of the population out of the post-2015 development agenda.

It is in this context that a new campaign assumes utmost importance. Called Action2015, this campaign aims to take the movement for a strong post-2015 development framework to the grassroots. National organisations will determine what should be the priorities for their countries when it comes to post-2015. The issues will be incorporated in the larger campaign slogan called iMove against– Inequalities, Injustice, Insecurity.

The post-2015 development framework holds immense importance for people in the Global South, especially people with disabilities. Organisations working for disability, therefore, have to be proactive in working with their respective governments to ensure that disability is included as an integral issue cutting across all goals, targets and indicators. Disability will also have to be given due importance in resource mobilization and allocation. So far, globally, the disability movement has celebrated small victories of being mentioned sporadically in some of the reports and outcome documents. But this may not necessarily be reflected in the final post-2015 development framework. And, if we do not involve the grassroots leaders and organisations, our hope of an inclusive development agenda will not materialize.

(Dorodi Sharma works with Disabled People’s International, the world’s first global human rights based disabled people’s organisation. It has reach in over 130 countries across seven regions of the world.)

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Panel: Operationalizing the 2030 agenda for sustainable development: Disability data, statistics and indicators, monitoring and evaluation for inclusive development

My name is Dorodi Sharma and I represent Disabled People’s International (DPI) at this panel. DPI is the world’s first cross-disability global disabled people’s organization established in 1981. As of today, we have members in more than 150 countries across seven regions of the world.

At the outset, I would like to extend my personal and my organization’s appreciation to UNDESA and the leadership at the Secretariat for the Convention on the Rights of Persons with Disabilities not just for today but for their overall support in furthering the cause of disability.

Ladies and gentlemen, majority of DPI’s membership is in countries of the Global South. And therefore, when we look at issues such as accessibility, inclusion, urban development, habitat – some of the issues discussed, and disability data, we look at it from the lens of the 800 million people with disabilities in these countries. These, as one of the panelists said, are ‘data poor’ countries.

If we are to make Agenda 2030 a reality for persons with disabilities, especially for those from these ‘data poor’ countries, we have to go beyond the goals, targets, and indicators where disability is explicitly mentioned. It has to be an overarching effort encompassing all aspects of the SDGs. Why? Because it is 2015 and we are already several decades behind. And if not now, then when?

One of the most critical components that will determine the success of Agenda 2030 will be data. Unfortunately, disability is more often than not left behind when it comes to data. Besides the lack of data, the other problem with whatever little data is available is that of comparability and reliability. Even today, there is a lack of cohesion when it comes to tools of data collection. While it is heartening to see that at the global level there is a growing convergence between the Washington Group, UNICEF, WHO, ILO, and others, we do not see this at the grassroots. I would like to give you an example from my own experience. I am from India and when we were working with the Indian disability movement toward inclusion of disability in the Population Census of 2011, the Washington Group question was one of the choices given to the leaders. Yet, they decided to go with a question based on the medical model of disability. There is gap between the global and the grassroots when it comes to disability data and this needs to be bridged somehow. People with disabilities at the grassroots need to be informed and their capacities built so that they can effectively advocate for globally comparable disability data.

Given this scenario, DPI welcomes the setting up of the Global Network on Monitoring and Evaluation for Disability Inclusive Development and feels privileged to be part of this. We pledge our support towards the work of this network.

DPI also takes this opportunity to place before this gathering a call for a ‘Disability Data Revolution’ towards fulfillment of Agenda 2030. Unless we count EVERYONE, including the one billion people with disabilities we will not really know who has been ‘left behind’!

DPI also calls upon the United Nations and its Member States to set up a framework to catalyze this Disability Data Revolution.

To conclude, DPI calls for the full participation of people with disabilities, especially those from the Global South, towards fulfillment of the Disability Data Revolution and Agenda 2030, keeping in consideration the spirit of ‘Nothing About Us, Without Us’.

Statement on behalf of Disabled People’s International delivered by Dorodi Sharma at International Day of Persons with Disabilities 2015 

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Good evening everyone. My name is Dorodi Sharma and I am representing Disabled People’s International (DPI) at this meeting. DPI is a cross-disability, global disabled people’s organisation established in 1981 – the International Year of Disabled Persons. We have members in over 150 countries across seven regions of the world – Africa, Arab region, Asia-Pacific, CIS region, Europe, Latin America, and North America & Caribbean. DPI members are national umbrella DPOs who in turn have hundreds and thousands of member NGOs and DPOs. Majority of our members are in the Global South. Therefore, DPI’s expansive reach at the grassroots is quite unique. DPI was privileged to be part of the first meeting of this network. Since then, DPI has organised its 9th World Assembly in New Delhi from April 11-13. Over 200 DPO leaders from 70 countries participated in this Assembly. My presentation today is primarily based on the discussions that emerged at this Assembly.

When it comes to disability inclusive development and disability data, where are we now? There is good news. Disability data is getting more and more mainstream than it ever was. DPI welcomes the setting up of the Inter-Agency Expert Group on Disability Statistics and feels that this would further encourage countries and multi-lateral agencies to collect data on disability. Having said that, there are still areas of concern among the grassroots DPOs.

Despite the trend of a gradual convergence of measurement tools and standards at the global level, there still exists tremendous duplicity of work. This creates further confusion at the grassroots. As has been mentioned in this meeting before, the pressure is on National Statistical Offices (NSOs). The confusion at the global level makes advocacy with NSOs even harder for grassroots DPOs as most of these offices are already averse to collecting disability data or even disability based disaggregation of existing data.

The other issue is that disability inclusive development is still largely seen as a global discourse. Particularly for the Sustainable Development Goals (SDGs) DPOs at the grassroots are still unsure of their role, partly because clarity has still not evolved at the global level. And this knowledge gap between the grassroots and the global level needs has to be bridged to create more ownership. After all, the advocacy to implement disability inclusive development will be led by these DPOs. The lack of capacity of grassroots DPOs affects the preparedness of Global South countries to collect disability data. A study conducted by the Global Initiative for Inclusive ICTs (G3ict) and DPI, involving 100+ countries of which 84 were from the Global South, revealed that 78 percent (or 64 out the 84 countries) did not collect any data on disability related to the SDGs. Of the 20 countries that did collect data, they did so only for a subset of four of the SDGs – i.e. Goal 4-Education, Goal 8-Employment, Goal 11-Inclusive Cities, and Goal 17 Means of Implementation. Even within this subset not all 20 countries have data on all four. For example, only 10 out of the 20 countries collected data on education, and only 6 out of the 20 collected data on employment, and so on.

What has been DPI’s experience and what is the road ahead for us? At the 9th DPI World Assembly in New Delhi we had a session on disability data and the SDGs. The resonating view among the participants at the Assembly was that people at the grassroots are still getting around to understanding the SDGs. But a majority of them, if not all, are working on the Convention on the Rights of Persons with Disabilities (CRPD). DPI members, who are also the national umbrella DPOs of these countries, emphasised that CRPD and the SDGs are not mutually exclusive of each other. In fact, they reinforce each other. SDGs must, therefore, be part of the CRPD related activities that are ongoing at the grassroots. There is still tremendous work to be done at the grassroots and a need for greater cohesion even within the disability movement, particularly among global DPOs.

The Delhi Declaration adopted at the end of the 9th DPI World Assembly highlighted these points, particularly connecting SDGs and the CRPD, and ensuring disability data. The Delhi Declaration called for a disability data revolution led by governments and international agencies and DPOs by developing and promoting standardised tools and methodologies and capacity building of relevant actors which will catalyse not just disability based data disaggregation but also lead to reliability and comparability of the data.

In conclusion, DPI reiterates its commitment towards disability inclusive development and particularly to the work of this network. DPI would be privileged to support this network as best as it can, particularly as a bridge between the mechanisms at the global level and the grassroots where it enjoys an expansive reach.

Thank you

STATEMENT DELIVERED BY DORODI SHARMA ON BEHALF OF DISABLED PEOPLE’S INTERNATIONAL (DPI) AT THE 2ND MEETING OF THE GLOBAL NETWORK ON MONITORING & EVALUATION FOR DISABILITY-INCLUSIVE DEVELOPMENT ON MAY 3-4 2016 AT UNHQ IN NEW YORK 

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Excellencies, Secretary General Mr. Ban Ki-Moon, Madam Pollard, ladies and gentlemen

I am delighted to be here today celebrating the International Day of Persons with Disabilities.

When I see the world as a mother with a disability, I immediately face physical barriers, attitudinal barriers, social and economic barriers that limit our full potential around the world. About 20 years ago, I was involved in a car accident and became a wheelchair user. In just one second, despite your wealth, your education, or your social status, accident or illness could happen to you and you could become a person with a disability permanently.

It was shocking to find out that I would no longer be able to walk on my own two feet, but what was most shocking was when I realized how differently society viewed and treated persons with disabilities. When the use of my legs was taken away, lots of abilities, experiences, opportunities, and dignity were also taken away from me. Many people saw my wheelchair before they saw me.

Today, there are more than 1.3 billion people living with some form of disability, and the numbers are growing. While we have made great strides towards creating an inclusive and accessible world, our work is never ending.  As a Paralympian, I am excited that my hometown Tokyo will host the Paralympic Games in 2020. As Sir Phillip Craven the chairperson of the International Paralympic Committee said, the games are considered to be the best event for driving societal change for the better of everyone. Lord Coe the chairman of the IAAF recently descried the Paralympics in London as a piece of social engineering that went way beyond any legislation.

The ideal society will enable people of all abilities to participate and contribute as productive members of our communities. Together we need to embark on a long-term programme of inclusion, and to encourage all people to maximise their development of whatever positive ability  they possess, rather than focusing on any perceived lack there of. The theme for this year’s International Day of Persons with Disabilities ‘Inclusion Matters: Access, Empowerment for People of All Abilities’ therefore could not have been more relevant. With the world looking at Agenda 2030, the time to make the right real for people with disabilities is NOW.

Together we need to embark on a long-term programme of inclusion, and to encourage all people to maximise their development of whatever positive ability they possess, rather than focusing on any perceived lack thereof. 

In closing I would ask you to try to imagine a totally united, inclusive, and accessible global community. What freedom. What dreams and ideals could not be accomplished, with everyone from all communities working together. Hold this dream in your minds eye for a just minute and we are already one step closer. Wouldnt it be the “Best World Ever”!

Statement on behalf of Disabled People’s International delivered by Miki Matheson at the Opening of International Day of Persons with Disabilities 2015

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