Thank you to all the Conversation Leaders for their time and commitment to taking part in this important conversation. Please take a moment to learn about the conversation leaders by clicking on their profile photos. Thank you!
Below is a list of questions to serve as a framework for the discussion in this thread:
- Share best-practices/success stories of grassroots campaigns and public awareness initiatives shaping disability inclusive policies?
- What are ways to ensure disability programing is being included in all policies, from the health sector to rural development, not just disability specific legislation?
- How can we assure the legislative process is inclusive of people with self-identified disabilities?
- Are there specific tactics that have been successful to lobby representatives or advocate within the government for legislative change?
I am a 71-year-old with cerebral palsy. I grew up in the United States and overseas, was educated and enjoyed a successful professional life before comprehensive disability legislation was enacted in the United States. I was fully included in my family, in my schools, and in my communities. This full inclusion came about because of my parents and their tenacity, my brothers and sister, and when I was old enough, because of my own ability to advocate for myself.
To me an inclusive society means -- people with and without disabilities do things in the same place at the same time, in effect, having the same experiences.
Making societies inclusive is something that we all must work toward and secure. Doing so is more than an ethical or moral obligation related to rights, it is also economically a smart thing to do given the fact that there are 1 billion people with disabilities, many of whom live in poverty.
One effective way to reach national, regional, and local leaders and bring about needed changes – the availability of reasonable accommodations and accessible environments so that people with disabilities experience community life as and with others – is to tell a story publicly, then another story, and another story, until a pattern emerges, and leaders sees the value of bringing about change. Finding the right story, building on it, is what I call strategic storytelling. Such a story has a purpose to change how people think, act, make decisions, and make policies. Strategic storytelling helps us get from how things are to how things should be.
We begin with an individual and his or her story; we then collect information on individuals in the same circumstances; we determine if there is a clear pattern; and then we take our inquiry to the next level. We go from the individual to the neighborhood, from the neighborhood to the town or city, from the city to the region or province, from the region to the nation, and from the nation to the world. At every level we make the effort to share the “growing” story with people in the same situation, their families and friends, with people who can help and serve them, and leaders. The way we do this may be face-to-face or through social media, the press, television, video, radio, or a simple letter.
What should the first story look like? It should be strong and clear. It should describe and explain the need, the urgency, and reasons for needed change. It should include accurate details and likely consequences if change does not come about. In our case, what happens if we don't work together to bring about inclusive societies?
When we have several stories that are equally compelling and meet a pattern, we build a bigger story, a stronger narrative, which includes information about how policies have or could be drafted to bring about positive change. When building our narrative we include numbers, point out similarities and differences related to individuals’ experiences, provide comments about what people want to improve their lives, describe strategies that could make this happen, outline costs, and end with a clear statement of what the consequences will be if needed change does not occur.
Anyone can engage in strategic storytelling. In my view, everyone should if we want inclusive societies worldwide. Here are some questions for you:
Wonderful thoughts! Putting a face on disability rights can be a very powerful tool. As you stated, this is a community of one billion individuals with a range of disabilities and socioeconomic situations. Considering this diversity, should we create a “growing narrative” that is inclusive of a range of disabilities? Stories may lose their focus and potency if they try to encompass too broad of a range of individuals. Therefore should disability activists focus stories on specific disabilities? A limitation of this strategy may be that disability communities become siloed and lose their collective strength. Is there a balance to create an effective strategic story? Please give examples of (and links to) strategic stories you have used!
You're thoughtful comments are right on! Anytime I've been involved in strategic storytelling we have focused on covering all disabilities and collecting as many stories as possible. That made the difference. It was always tied to legislative advocacy and the push to get legislation acted. Congressmen were impressed by diversity and numbers, but especially how many stories came from his state. They often used these stories in floor statements.
In promoting inclusive societies where do we start?
That is the fundamental question, but it does not need to be complicated. It does not need only researchers. What it does need is the willingness on the part of everyone to help create more inclusive societies. So whether we are a person with a disability, a family member or friend of the person with a disability, an educator, an employer, a local elected official, or the owner of a restaurant, we can play a role in creating more inclusive societies. And clearly, we can have more of an immediate impact if we work with others who are committed to creating inclusive societies.
The process begins with a few simple questions, the answers to which will give us direction. These questions have relevance in a small town in New Hampshire, as well as anywhere else in the world. We want to be systematic and realistic as we tackle the questions. Of course, the more people who can help, the bigger and broader the effort can be to collect information.
Answers to the five questions above have implications for how we proceed. They bring us to the problem-solving phase of our efforts.
Answers to these last questions will help identify those things we can tackle at the local level and those which have broader implications and require investment from others in finding and implementing solutions.
Promoting inclusive societies is everyone’s business. Students at all levels, retired persons, people who belong to a religious community, and many community volunteers enjoy hands-on projects. Reach out to them and include them in your efforts to collect information about the status of inclusion of persons with disabilities in your community and how to make it better.
Dear Patricia - Thank you for sharing this five question structure. I have an example from Jordan where persons with disabilities identified a critical area of public life where they were clearly absent - in the electoral process. The group, TAKAFO, produced a video sharing their story (linking to your strategic storytelling post) sharing the strategy and tactics they used to gain access to polling stations for people with disabilities. The example also connects to your additional post on influencing polices.
Please note when viewing the video that the English captions begin 15 seconds into the video.
Thank you for sharing this example. It is very powerful. It demonstrates what DPOs can accomplish when they collaborate. The sky is the limit!
I am very much enjoying the contributions in this thread! Pat's work on storytelling as advocacy has really made me think about how we can create safe spaces for stotytelling, for instance, in the context of disability rights education workshops with disability advocates. I really like the Jordan example provided which gives areally great concrete example of a storytelling medium!
One of the exercises that I really like doing at the start of a disability rights workshop is one Steve Estey and I have often used - the Myths and Stereotypes exercise found in the CRPD curriculuum, Human Rights YES! Action and advocacy on the rights of persons with disabilities. (http://www.humanrightsyes.org)
We start by asking participants to help generate a list (in small groups or in plenary) about myths and stereotypes about disability in their community (or in relation to a specific topic just as working, voting or education). After we have generated that list, we then move on to ask participants to share either their own experience or those of people in their community of how these kinds of perceptions and attitudes can lead to de as discrimination. We ask for concrete examples. This helps people make connections and often brings out specific stories about discrimination.
This discussion thread made me think about how we could use those exercises and then make a very concrete link to storytelling and its stratetic use in advocacy based on experiences of discrimination.
Too often I find that disability advocates who have incredible insights and experiences that are important advocacy tools undervalue that expertise and experience. Storytelling as a strategic advocacy tool is perhaps something we need to emphasize more in disbaility rights workshops!
Janet and Pat's contributions have been illuminating for me. I really appreciate their insights into storytelling, narrative and language. They rightly recognize narrative and language as empowering people with disabilities with a voice in a world that wants to render them voiceless and often succeeds in doing so. Stories are revolutionary, or at least they have revolutionary potential in fighting marginalization by asserting the value of people's lives. Yet I have the impression some scholars in the traditional law academy regard articles using narrative and stories with disdain because, according to them, these articles aren't rigorous scholarship. When African American writers entered the academy in the latter part of the 20th century, many were criticized as not being scholarly enough because they used narrative as a tool for analysis and advocacy. Is that a problem for disability writers nowadays?
What makes a strong policy?
A policy is a description of how things are to be done. Nondiscrimination on the basis of disability is a policy that most often promotes inclusion in the direction it gives. Policies are reflected in law, regulations, policies statements, and guidelines. Policies often come from an official source, such as a president or prime minister or a legislative body like the U.S. Congress. Of course, policies can also come from govrnors, government agencies, local elected officials, and organizations. In effect, policies can come from many places, But the key point is the best policies are those that are shaped and influenced by the people they are going to affect.
In general, how do we know if a policy is strong? I spent many years drafting and evaluating legislative language. These are the questions that I would ask/answer when drafting or analyzing policy.
The specific things I would look for or seek, a policy that was/included --
The implications associated with each one of these bullets is obvious. If a policy is not clear no one would know what to do. If a policy is not mandatory, then many may not do it, giving us patch quilt results. A policy should cover everyone we want to act or protect. Exceptions are loopholes. If a policy spells out the specifics of what is required, and provides a reasonable timetable, people are more likely to comply with it. If given money to do what a policy requires, people are more likely to comply with it. If given help in the form of technical assistance, people are more likely to comply with it. And finally, a strong policy must have adverse consequences or people may not comply with it.
Let me give an example from the ADA, the Americans with Disabilities Act. Local communities were not expected to comply with the ADA overnight. They were given the option of developing a five-year plan that laid out when accessibility elements would be in place in the community. For example, when at certain locations curb cuts would be installed, when courthouses with steps would be made accessible, when alternative means of doing business with local government would be added for people who could not leave their homes, or when parking spaces reserved for people with disabilities would be available at government buildings. By giving local governments time to research, think through, and talk to each other and people with disabilities about how to make communities accessible, thereby inclusive, local governments were able to make smart decisions within their budgets. If someone objected to an accessibility feature not being available at a particular location, local officials could show the objector the local plan, and when that feature would be installed/implemented.
Thank you for your post about strong disability policies. Your bullet points are especially useful. I have a question for you or for anyone else who cares to weigh in. Do you have any experience enforcing such policies when governments do not have the money to prepare and implement them effectively? Or, the governments have the money and do not see disability as a priority. What do you do in such cases? Has anyone successfully negotiated such issues?
The best advice I can give if money is scarce is this --
Make a wish list and prioritize
Brainstorm about incentives of all kinds that may inspire people to do the right thing
Be realistic and allow people opportunities to do things incrementally. It Is better to do something rather than nothing. That is why requiring plans is a strategy that has so much power, especially if people are going to be affected are involved in its development.
I really like the notion of creating incentives. I will think on that and see what can be done out here in Kenya.
I was in a meeting with the education director of an NGO Kenya yesterday and he was discussing the idea of giving families a small monetary grant per month to help them support their disabled child at home and encourage them to attend primary schools. The families would only receive the money each month of their children in inclusive schools. Of course there was also discussion of wrap-around inclusive supports in those schools/communities (e.g., trainings, sensitization of disability). Has anyone ever used/seen this approach to inclusion work in other countries?
The best advice I can give if money is scarce is this --
Make a wish list and prioritize
Brainstorm about incentives of all kinds that may inspire people to do the right thing
Be realistic and allow people opportunities to do things incrementally. It Is better to do something rather than nothing. That is why requiring plans is a strategy that has so much power, especially if people are going to be affected are involved in its development.
A society which values diversity, respects equality and realizes the full potential of persons with disabilities in order to build a better world for all is the vision of International Disability Alliance. In order to advance the human rights of persons with disabilities the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) serves as a guiding document.
The CRPD is intended as a human rights instrument with an explicit, social development dimension. It adopts a broad categorization of persons with disabilities and reaffirms that all persons with all types of disabilities must enjoy all human rights and fundamental freedoms. It clarifies and qualifies how all categories of rights apply to persons with disabilities and identifies areas where adaptations have to be made for persons with disabilities to effectively exercise their rights and areas where their rights have been violated, and where protection of rights must be reinforced.
The UNCRPD has been ratified by 159 countries and all these States Parties must undertake all necessary legal actions/harmonization to comply with the articles of the UNCRPD. One of the main principles of the UNCRPD is to include persons with disabilities in all processes relating to them, therefore the disability movement adopted the Nothing About Us Without Us principle. The inclusion of persons with disabilities and their representative organisations must happen at all levels, national, regional and global. In order to realise this the aim of the my organisation, the Alliance is to promote the effective and full implementation of the UNCRPD worldwide, as well as compliance with the CRPD within the UN system, through the active and coordinated involvement of representative organisations of persons with disabilities at the national, regional and international levels. Persons with disabilities are the world’s largest – and most frequently overlooked – minority group.
A success story from the global level advocacy:
Persons with disabilities were absent from the Millennium Declaration and remained so in policies and processes related to the Millennium Development Goals (MDGs). As a result, the one billion-strong population of persons with disabilities has remained excluded from a framework that sought to eradicate the precise conditions this population continues to face. Eighty per cent of persons with disabilities live in developing countries and are overrepresented among those living in absolute poverty. In September 2015 Heads of States and Goverments adopted the 2030 Agenda, which will replace the MDGs. This new document recognised and included the rights of persons with disabilities in 11 different areas with the aim to ensure to end powerty, to achieve economic growth for all and to realize inclusive societies for all. This achievement was shaped with the inclusion and through the contribution of persons with disabilities.
Thank you for your post in the CRPD and human rights. I use Articles 24 (Education) and 32 (International Collaboration) as the impetus for much of my international work. However, I find a lot of tension when I frame my work around the notion of "universal" human rights. I strongly feel that access to education is a universal human right, but I get pushback from colleagues when I claim a universality of rights. Do you come up against similar struggles?
Would I be correct in that there is at least sometimes a cultural dimension to defining certain rights as "universal"? I've been told that sometimes there is resistance to the idea that certain "rights" are necessarily shared in common across all cultures, or that all countries necessarily should adhere to the same set of principles around human rights. Which is interesting when you consider that there are certain human rights documents, such as the Convention on the Rights of the Child, that have in fact now been ratified by very nearly all countries (excepting the United States). Or are you seeing a different kind of tension/pushback?
You articulated very nicely the tensions I see with using a universal approach to human rights. There is a definite component of cultural relativism that needs some unpacking in the human rights arena. This article provides a critical rundown of the tensions of a universal approach: Bickenbach, J. E. (2009). Disability, culture and the UN convention. Disability and Rehabilitation, 31(14), 1111-1124.
I highly suggest giving it a read. It pushed my thinking on human rights quite a bit.
I appreciate the thoughtful comments of Brent and Andrea on cultual relativism. I am very skeptical of arguments that brush aside the universality of human rights based on simplistic critiques of human rights as imposed from the outside when in my work I see the agency and embrace of human rights frames by local groups who very often are using their own national or regional human rights systems in their advocacy. When I try and unpack some of these critiques, I often find that they stem from (1) witnessing human rights practices imposed from the outside without appreciating local culture and agency; or (2) simply a gross misunderstanding of what human rights practice is.
As human rights advocates I think our responsibility is to closely adhere to human rights principles in our practice of human rights. This is especially important in communities where using human rights frames is new - as in communities of disability advocates. Being mindful of our accountability to local advocates with whom we as international disability rights advocates partner is essential. This is why I think engaging in practices such as storytelling (see Pat Morrissey's comments in this dialogue) along with particiaptory human rights education (that adheres to the principles of the CRPD in terms of accessibility, respect for difference, inclusion and the like) is essential.
I like that you highlight the importance of collaborating with local cultural authorities when implementing human rights. One potential risk I find in that approach is certain local groups may have more cultural capital than others and this could reify oppressions that such collaborations seek to mitigate. Have you (or anyone else) found similar dynamics when collaborating with local groups?
i think you have a very good point there! it should be national in all the world. but how far can we go in this idea?
Article 33 (2) of the UNCRPD provides for establishment or designation of independent monitoring mechanism to monitor implementation of the Convention at the national level. Kenya ratified the UNCRPD in 2008. In 2011, the Kenya National Commission on Human Rights (KNCHR) was designated as the independent monitoring mechanism. Following institutional reforms which introduced multiple human rights institutions in Kenya, the National Gender and Equality commission was designated as the independent mechanism succeeding KNCHR . This however does not preclude KNCHR from undertaking activities to promote and protect rights of persons with disabilities in Kenya as it is the accredited national human rights institution with A status.
In my experience, I have witnessed the opportunities that article 33 (2) presents to ensure disability inclusive policies. First from Kenya's experience, there is the forging of partnership between the national human rights institution and Disabled Persons Organizations at the national and grassroots level. For instance, KNCHR had different advisory groups that included persons with disabilities and their representative organizations not only on CRPD related activities but broadly including mainstream international obligations such the Universal Periodic Review Process and Committee against Torture. The project on implementing article 12 in Kenya included a technical committee comprising representatives from DPOs such as the Users and Survivors of Psychiatry-K and Kenya Association for the Intellectually Handicapped among others. Joint submissions were submitted to governments, international treaty bodies including during drafting of the General Comment No.1 on equal recognition before the law, advocacy to amend the Marriage Act 2014 which was prejudicial to persons with psychosocial disability and a joint research on 'how to implement article 12 in Kenya'-http://www.knchr.org/ReportsPublications/ThematicReports/GroupRights.aspx.
Monitoring activities which included monitoring visits to various counties included representatives of DPOs and at the end of five day visit, an awareness forum was held to sensitize members of their rights and complaints mechanisms. Kenya was reviewed by the CRPD Committee during the 14th session in August 2015 and during its side event, the KNCHR made joint submissions with DPOs allowing DPOs to present to the committee issues that they strongly advocated for while KNCHR spearheaded issues that they had been working on. Through this, DPOs had extra time with the committee to share their concerns in addition to the private sessions held with DPOs.
In summary, in countries where DPOs enjoy good relationships with national human rights institutions and such NHRIs have been designated as independent mechanism under article 33 (2) and enjoys maximum independence ( personally, financially and legislatively), opportunities to ensure disability inclusive policies are likely to be more. In addition due to the status that NHRIs enjoy, it is easier to get more allies from different arms of government including judiciary and the legislature ( through parliamentary committees). A case example from Kenya is the engagement with the Kenya Parliamentary Disability Caucus and Judiciary Training Institute which runs capacity building programs for Judges.
I appreciate this post and the pracatice shared!
DPO engagement with NHRIs is mutually beneficial as NHRIs stand to learn from the disability community as they build their internal capacity on disability rights and DPOs stand to gain from the expertise of NHRIs in broad-based human rights issues.
I like the work of my colleague, Gauthier de Beco, who has written on Article 33 and share a link to one of his studies on Artice 33 of the CRPD below...
I wonder what you think about the tendency among some DPOs to press for a disability-specific human rights monitoring body as a means of implementing Article 33(2). I worry that establishing a separate monitoring body, though certainly appealing in some respects, is potentially problematic when resources are very limited. Better to work towards ensuring that the national human rights commission is fully inclusive and integrates disability rights into its programs? What do you think?
I certainly agree with you Janet. Establishing a disability specific human rights commission may be faced by resource challenges among others. Moreover, article 33 (2) is very clear that such organizations should fulfil the Paris Principles which may be a challenge to a disability specific human rights monitoring body as its mandate would only be limited and not as broad as NHRI.
Secondly its about segregated services and the message we convey to the community. I believe if are advocating for inclusion then our focus should be ensuring that even mainstream institutions adequately address the issues of persons with disabilities by capacity building and providing adequate resources. Multiple NHRIs tend to have challenges with regard to harmonisation of their roles and activities making it more complex for general public and CSOs to engage. There is also competition for relevance and instead of complimenting one another, they engage in unhealthy competition. There is also the question of whether such institution would be granted enough powers to carry out the monitoring role effectively for instance, quasi judicial powers which are prerequisite to receive and investigate complaints and also to carry out public interest litigation. Richard Carver has provided an opinion on one or more multiple NHRIs which is worth reading: http://jhrp.oxfordjournals.org/content/3/1/1.full.pdf
It is very important to set up policies that will govern and create inclusion for people with disability but in most developing counries, policies are set for persons with disabilities but what is lacking is the experts, facilities, and accessability for persons with disability. developing countries recorded the higher percentage of persons with disabilties according to records given by the united nation, but more room is still needed in training people to know the needs, facilities and equipments that can be used to create employment opportunities and inclusion in nation development.
Setting up policies will then come to defend and help guide them in their advocay and pushing the society or policy makers to understand and create more rooms that will enable the disable peolpe to partake or be inclusive in matters that concerns the human race.
so in my mind there is still more to be done in developing countries,its not only about policy making but capacity building.
Check out the use of “micronarratives” in Belarus. Individuals with disabilities wanted to share their stories through the use of new technologies. These stories both acted as an opportunity for people with disabilities to have their stories heard and provide valuable data source.
“When people make diary-style entries on their experiences related to areas outlined by the UN Convention, such as education, health, and social welfare, we get access to first-hand information, which can complement traditional social science research methods and give us a clearer picture of people’s experiences.”
“Micronarratives prompts people to tell meaningful stories that they themselves interpret (so no “expert” opinion), and the stories are run through sophisticated software and charted and mapped – by topic, age, sex, location, sentiment and more.”
I think your questions are very good ones. I would also add:
How can we create and spread these narratives in regions where technology is scare and access to the internet is low?
I would add that we need to think about ensuring that narratives in written form be adapted to sign language so that Deaf people can access the written material.
Thank you very very much for all your comments, I very much value them highly and all of you have addressed a number of very important issues.
I sincerely apologies if I am not able to addres all the comments or I am not able to address the way you hoped for it. I would recommend that you can browse and explore the website of IDA, that can answer a number of your question in relation to the UNCRPD implementation on the national level:
Allow me to focus on global commitments of Member States of the UN, tand draw your attention to the newly adopted 2030 Agenda. We have advocated for years to achieve an inclusive 2030 Agenda - which intends to replace the Millenium Development Goals, will bring a fundamental shift in the lifes of persons with disabilites. This new agenda captures the rights and empowerment of persons with disabilities in the most important sections such as non-discrimination, educarion and employement, accessible infrastructures and transportation, disaggregation of data by disablity status etc etc. The promise of the 2030 Agenda is to leave no one behing, including persons with disabilities. We think this 2030 Agenda is relevant bevcause it will be implemented in all countries, including those where the CRPD is not ratified and must streghen the rights of persons with disabilities in the national and community level. I am talking about the 2030 Agenda because it might be important to you in your daily work/advocacy.
Read more about 2030 Agenda here:
I'm a child of the Sixties, wearing with great pride the badge of having been arrested for protesting the war in Vietnam (I was tried and convicted of criminal trespass in the same courtroom as Henry David Thoreau 150 years earlier). I hold on to the idea of civil disobedience as an effective tool in forcing attention to the problem of discrimination and marginalization and effectuating change in policies and practices.
However, I am aware that in certain societies with authoritarian governments or traditional ways of conduct and behavior, civil disobedience would be dangerous or counterproductive.
What about the idea of passive resistance as a way of calling attention to the lack of resources, patterns and practices of discrimination based on disability, or what I call "stinking thinking" about disability?
I wholeheartedly endorse Patricia Morrissey's emphasis on storytelling. Narrative is a powerful arrow in the quiver of human rights, and it must be utilized everywhere possible.
Brent, education as a universal human right is absolutely precious, but a little knowledge is a dangerous thing, and those in power, especially in the center, know that. The US Supreme Court is on record as saying education is not a constitutional right, and so many regretfully agree.
I think your notion of passive resistance is a very interesting one. I am curious to learn what that could look like in a country like Myanmar for example where resisting the government could be very dangerous. It is also interesting to think about the role of DPOs/NGOs in supporting such passive resistance.
I think ultimately the choice of protest, whether involving passive resistance or marching down the street with signs or however else, is at least in part a culturally bound decision. Hunger strikes, for example, may not meet with much success in countries like the United States that does not have a historical tradition of doing hunger strikes or focusing media attention on hunger strikers, etc. In these contexts, hunger strikes may be mostly done by people who have literally no other way to demonstrate resistance or discontent, for example prisoners who by definition experience profoundly restricted lives. For them, the choice to continue or stop eating may be one of the few choices they are able to make in their daily lives at all and may be the only form of protest that has any hope of grabbing attention. However, in places like India there is a longer history of using hunger strikes to speak out for social change, Ghandhi being perhaps the most familiar example. I have seen occasional news stories of people with disabilities in India using hunger strikes to help bring media attention to their cause. I am unsure if any of these have resulted in actual policy change or improved implementation etc., but they surely received at least some media coverage or I might not have discovered them. Although media coverage of disability rights rarely leads to any kind of immediate or rapid concrete change, it can at least raise the visibility of disability issues in general society.
What does a good policy look like?
That is a very straightforward question. But unfortunately, we often see examples of policy that are not clear, underdeveloped, or missing fundamental elements.
First, a good policy describes what will be done. It describes how it will be done, who will do it, when it will happen, and how long it will last. Second, a good policy describes whom it will affect. Third, it will address who will make it happen – who will enforce it; how its impact will be judged, and who will judge it. Finally, a good policy will describe how it may be changed and who will have a role in changing it.
As we work to bring about inclusive societies we must make sure that our policy drafting efforts include the elements I have described. There are implications behind these efforts. We must have people at the table who –
The bottom line is that policy development requires preparation and partnership.
Am very happy to hear all of your stories and how you guys share your information and what can we do as well to make it better. However, I want to ask you guys if you have a step we can make to make a change in this? Like for example what do you think if we ask the decision makers in influencing them to make a change in this aspect?
Also what do you think about the local NGO's and how can they make a change in this? like having a center for people with disabilities and giving them professional help for them and how can we make them come to realty?
What do you guys think?
thank you very much for all your comments, allow me to elaborate briefly about a possible way forward on advocating at country/community level:
As you know I am working on the global level advocacy, but since the adoption of the 2030 Agenda we are strategising how to empower persons with disabilities in the country level. So a very few preliminary ideas:
- The first thing is you have to set your goals and targets what you would like to achieve for persons with disabilities. This can be for example: inclusive education for children with disabilities. You have to analyse what are the barriers: physycal, attitudinal, communicational, what kind of national legislation needs to be changed in order to achieve this. What are the financial implications etc. So you will have to have a strategy that addresses these issues. When you design your strategy the best is to use some legally binding documents to support your argumentation. (UNCRPD, 2030 Agenda for example, althugh both are global documents, they do have points on education with regards to persons with disabilities.)
- As an advocate you have to be able to build a network this is the most critical point. On the global level we have taken a multifold approach, this might be useful on the community level. First, I would identify and collaborate with disabled persons organisations. They will have the best knowledge what kind of national regulations are there to work with and they wil have a broad membership. However, often different different DPOs will have different agendas, what might complicate advocacy. In my opinion the best way forward is always to unite forces and collaborate. So for example if you would like to achieve an inclusive educational system in your country: find all the DPOs, like make the Blind union speak with the federation of the deaf and so on...Propose inclusive aducation, build a strategy together, that includes everyones concern. Get a mandate. A mandate to speak on behalf of persons with dabilities will make your continued outreach legitimate. However you have to be able to keep to your mandate.
- Continue to build your network: your primary goal will be to speak with goverment/legislators in order to achieve a change. To achive this in some countries you might call the ministry and can have an appointment with decision makers; in some others this will be much more complicated. For example in many developping countries persons with disabilities have difficulties to approach goverment officials or often goverment officials do not understand the cross-cutting nature of disability. For example the ministry of education will say disability issues belongs to the social ministry. So in case you cannot bring the ministry of education to talk to you find who they talk to. We were very effective on the global level to partner with other groups. We worked closely with the groups advocating for children, the ageing constituency was a great ally, but we also worked with amnesty international etc etc. We set down and talked and they listened and they incorporated our request in their papers and we incorporated their requests in ours. Consequently and by sticking to the education example: the group advocating for children will for sure have a good contact with the ministry of education.
- Finally, one of the most powerfull tools of advocacy are numbers. We have been able to achieve global changes for persons with disabilities when the Report of the World Bank was published in 2011, which stated that there are 1 billion persons with disabilities wolrdwide. Numbers are critical to make a change, people will listen to numbers. Secondly you also have to measure progress achieved. Back to our example: when you advocate for inclusive education you will need to show with data - or somethimes the lack of data speaks volumes as well - how many children with disabilities have been included in the school system. An experience from the global level: the Millennium Development Goals have forseen the comletion of primary education for all the children. When the accomplishment of goals was assessed they said primary education is achieved. However there was a problem with the data: it only measured the completion for children, who entered primary education, it never measured those children, who did not enter school, like children with disabilities, because there were no ramps for wheelchair users, or blind children did not have braille material or there were no sign language teachers for the deaf children etc...
I hope this helps. Please feel free to ask.
Thank you Obartha for the information shared, the information is very vital but as regard to some developing countries it will be very difficult to achieve early success even when all the strategies mention by you is implemented reason being that most people are reluctant and adamant to changes when it come to disability issues. they feel that it is a waste investing in issues relating to differently able people.
so what is the best thing to do when face with such people?
I think one of the huge advantages that disability rights and advocacy has right now, is we have a pipeline of tools to get our message out that's right at our fingertips. Pictures may have 1000 words, but live videos of discrimination, inequality, segregation, etc. initiate movements. Think about it, we have more technology in the modern smart phone than Orson Welles had when he made the movie Citizen Kane. Not only do we have access to record the technology, but also to release it to the world. One of my new favorites is Periscope. Periscope allows you to broadcast video to a group of followers, which can be drawn directly out of a Twitter feed. You can broadcast live, but also share recorded feeds across the number of mediums.
Twitter is also a great tool to not only broadcast issues and messaging, but also to find like-minded parties who would make great coalition building partners. It also integrates and works seamlessly with Periscope. When using,you can query specific words by searching #WhateverYourIssueIs to find people who are dealing with similar issues, not just locally but globally. It provides a great medium, similar to our current exchange on New Tactics, with the exception that it's 24/7/365. One beauty of the Internet, it never sleeps.
I'd like to solicit people's views on the term, "disability."
I don't like the word. Dis-ability, meaning I lack ability? It's a negative term that tells me nothing about the person.
My view is that disability is located outside the body - it exists in the form of policies and practices that operate to marginalize and oppress people. We all have certain physical and mental conditions which interact with the physical environment in ways that may end up disabling us. Thus I like "human condition" better than "disability." We are all human beings with a vast range of embodiment, experiences that shape and in turn are shaped by our bodies in space and time, and for some of us, the lived environment - because of the lack of ramps, interpreters, pain control, what have you - disables some of us.
Michael schwartz i quite agree with you, it is inproper to use the word Disability, i prefer differently-able to that word disability. we are all able in one way or the other but when we say disable, it absolutely describes us as incopetent or inability to be productive in our communities. so let us all try to understand that as differentl able we are only limited to certain issues based on our human problems. Disability come when we are limited to visualised things around us (visually impaired), hear/communicate with people(Deaf), lack limbs for movement ( wheelchair users) etc... so these are the problems we need to understand as human problems.
It was not until 2014 that the UN appointed their very first Special Rapporteur on the Rights of Persons with Disabilities, Ms. Catalina Devandas Aguilar (Costa Rica). The UN resolution 26/20, which establishes this Rapporteur, states ” Recalling the universality, indivisibility, interdependence and interrelatedness of all human rights and fundamental freedoms and the need for persons with disabilities to be guaranteed the full enjoyment of their rights and freedoms without discrimination.” What impact do you think this appointment has on asserting the rights of persons with disabilities as a human right?
Just today, a report came out in which Ms. Augilar, encouraged States to make their social protection systems more inclusive of persons with disabilities.
“Most countries base their social protection systems on a ‘medical approach’ to disability. Under this model, persons with disabilities are seen as incapable of studying, working or living independently in the society,” said Ms. Aguilar during her report to the UN General Assembly yesterday.
This connects to Orsoyla’s comments on the new 2030 agenda. What impact do you think the agenda will or could have on your local context? What can you do to influence this?
i think this video is worth watching :)
The UNCRPD article 1. provides the most comprehensive definition of disability:
"Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others."
In the global advocacy we take the approach to talke about persons with disabilities and we do not single out one impairment nor do we ever talk about the ability of a person. Singaling out one or other charesteristics could be very controversial for others.
The impact of the 2030 Agenda will be hopefully significant. We have fought very hard to achieve the recognition / inclusion of persons with disabilities in this universal commitment. Currently, DPOs and NGOs are working very hard to design implementation strategies, they are in the process to apply for grants to enable effective implementation. If all goes well there will be a structured outreah, trainings, toolkits developed and a monitoring and follow-up mechanism will be put in place to monitor progress achieved for persons with disablities.
Words That Bring About Change
When we write laws we must use words with energy and strength that reflect the outcomes we want. When we read laws we should look for the same words. What words am I talking about? Words like – “freedom”, “independence”, “involvement”, “access and use”, “participation”, “person-centered planning”, “choice and control”, “supports and services”, “due process”, “responsibility”, “compliance”, and “accountability”. Chances are if we read a law that contains all of these words we are looking at a pretty good one, especially if the “who” behind terms like “choice and control”, “access and use”, “person-centered planning”, and “due process” is a person with a disability. The “who” associated with “participation”, “involvement”, “services and supports” should include the individual with a disability and others who have the authority to make decisions and who have the training and expertise to recommend or provide effective services and supports. The “who” behind “responsibility”, “compliance”, and “accountability” are the person(s) who make sure that what is written in the law happens, and if it does not, they face negative consequences. With the right “whos” expressed in a law we are more likely to get the outcomes we seek. Of course, the outcomes we seek are always freedom and independence, with or without reasonable accommodation, for the person with a disability. Behind many of these words is a call to action––a meeting to plan, a collection of options, and requirement to have the right people in the room to make decisions in a timely manner. Behind these words is an infrastructure that works.
Many U.S. laws contain these terms and have resulted in the benefits that people with disabilities in the United States experience with regard to rights and opportunities. People with disabilities are at the table when the U.S. laws affecting them are written. Both U.S. laws that are specific, such as the Individuals with Disabilities Education Act, and those that are broad, such as the Americans with Disabilities Act, contain these very important, very powerful words.
When these words are written in laws people with disabilities thrive. Their hopes are realized and they benefit, because they are able to participate in and contribute to the social and economic well being of their community. Words matter. They cause people to act in the right way. They cause systems to operate in the right way.
Pat lays out the importance of language, words, terminology in the context of disability - and indeed this applies as well to other groups who face discrimination, women for example.
I work extensively with DPOs who are trying to shape national disability law and policy. It can be a huge challenge to address legislative stereotyping in law and policy. Things are starting to change because we now can point to the CRPD as a common language that we can and should use. This helps. But not always. I am currently in Myanmar working with the Myanmar Council on Persons with Disabilities. They do have a new national law on disability which is very important start. At the same time, some of the terms in the national law certainly reinforce the kinds of stereotypes and attitudes that we in the disability community are trying so hard to so removed from law and policy.
But then we have some good examples - the African Commission on Human and Peoples' Rights in Purohit v. Moore emphasized that the very name of a particular statute belied its discriminatory bent - here I am talking about the Lunatics Detention Act - the Commission found a number of violations against persons with psycho-social disabilities in The Gambia in that case, and started off by denouncing the colonial-era law that that wrongheaded in every way.
In participatory disability rights education, we often use exercises that focus on language - language people see in their own laws and policies, and contrast that with the terms and language we would like to see, reflected for instance in the CRPD.
For more information, look at the exercises in Human Rights YES! Action and advocacy on the rights of persons with disabilities at: http://www.humanrightsyes.org
thank you for shareing this info plus the web site!
i think it have a good info in it
hello guys hope you are haveing a good say so far!
what do you think of haveing something or some place to be inchage only for orthosis and prosthesis? would it be any help for what are we trying to do?
wanted to share with you some of the work am involved in :)
Your pictures look interesting. I would love to learn more of the background.