UN Convention on the Rights of Persons with Disabilities: a call to action on poverty, discrimination and lack of access

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4. Ending discrimination is everyone’s responsibility


Discrimination noun: unjustifiably different treatment given to different people or groups – Chambers Dictionary, UK

“It is fear that makes disability different….”  − Augustin Agu, UNICEF Ethiopia

Discrimination kills. It also wounds, denies opportunities and impoverishes. Sometimes a subtle problem and sometimes a catastrophe, discrimination must end before full human rights for people with disabilities can be achieved.

Many at the conference were stunned when a Young Voices participant described how a priest who was caring for 60 blind people in Liberia was abducted by rebels, leaving them stuck without food between the rebel and government lines. They were then forced to wander in unfamiliar territory to find food and some were killed by both sides. Such brutality now makes it clear: discrimination against people with disabilities can cause human rights violations akin to some of the worst abuses of modern times.

On an individual level, the rape of disabled women and girls by HIV positive men, who believe that sex with a virgin can cure AIDS (and that disabled women are necessarily sexually inactive), is another kind of human rights tragedy.  So is the public murder of women who give birth to babies with disabilities.  In economic terms, discrimination by employers who prefer to pay fines rather than hire disabled workers can trap whole families in poverty.

A human rights perspective informed debate among panel and workshop speakers and participants. Many called for a shift away from a welfare or charity orientation, to a human rights approach to tackling discrimination. Disability rights must be integrated into all laws and practices, they argue, to catalyze the widespread institutional and personal change needed to overcome the discrimination that now exists.

In politics, this would mean promoting the participation of disabled people within all spheres of government, not just those focused on disability issues. In the media, it means showing the complexity of disabled people’s lives, rather than just reporting their problems. In workplaces, it means bringing to life the principles embodied in the UNCRPD, that all workers have a legal right to be treated equally in every employment setting.

While participating in this conference, sponsored by an NGO and a UN commission, delegates put forward an important challenge: development and emergency relief programs must not inadvertently discriminate against people with disabilities. As actors in this field, we must ask ourselves whether some humanitarian aid projects have actually made the situation worse for disabled people.

This holds true as well for educational institutions, which several speakers identified as being crucial to ending discrimination. India’s 300 universities did not set out to discriminate against people with disabilities, for example, yet not one is currently accessible. The teachers at a special school for deaf children in Uganda may have good motives, but when not one child in a class of 30 passed the first primary school exam, the impact of discrimination within the education system was obvious.

4.1 Panel presentations

To set the stage for a comprehensive exploration of how discrimination works and how it can be undone, panel speakers focused on government policy, social policy and the role of the media:

4.1.1 Filling the gaps between policy and practice in human rights
Speaker: Alexia Manombe-Ncube, Member of Parliament, Namibia

If a blind man cannot read the instructions on a condom wrapper because they are not printed in Braille, how can he use one properly? If a woman who uses a wheelchair cannot enter a health clinic, how can she be tested for HIV/AIDS?

The fact that most health service providers in Namibia consider their services to be inclusive, even in the face of the above issues, is one reason why panel speaker Alexia Manombe-Ncube considers discrimination against people with disabilities to be widespread. While much of this is unthinking, as in the above two examples, it has led to poverty and health problems. It is also a cause of one of the most shocking facts about HIV/AIDS in Africa – that people with disabilities have higher rates of infection than non- disabled people.

Ms. Manombe-Ncube is chairman and founder of the Namibian Association of Differently Abled Women (NADAWO) and Namibia’s MP for the constituency of disabled people.

From this, she has come to believe that the best way to combat discrimination is for people with disabilities to become more visible in leadership positions.

Last year, Ms. Manombe-Ncube presented a motion on this subject to the Namibian Parliament. Having received a good response from MPs, the Standing Committee on Legal and Constitutional Affairs has started visiting other countries to learn of their experiences with the participation of people with disabilities at all levels of governance. This consideration will, she hopes, lead to the passing of a law to increase the visibility of disabled people within the government.

This is one of the more striking examples of how the disability movement and government can work together. Other examples in Namibia include three acts guaranteeing rights in several spheres, and the ratification of the UNCRPD in December 2007, making it the fifth country in the world to do so.

Since legislation is becoming comprehensive, the issue now is to speed up the implementation process. The current policy environment focuses on mainstreaming disability issues, making them the concern of everyone rather than just special interest groups. Within the Office of the Prime Minister, the Disability Unit helps ensure that individual actors within each government sector have specific activities to implement, and that they all contribute to the overall goal.

Ms. Manombe-Ncube lists several important messages for those dedicated to ending discrimination against disabled people by increasing their visibility and participation:

  1. Everyone, not just those deemed to be specialists, needs to be concerned with disability issues. We must work to increase the ownership of disability issues by many stakeholders, with the goal of mainstreaming disability
  2. People with disabilities must remain the focus of attention in participation, leadership and driving the agenda for action. The UNCRPD embraces and reinforces this argument, which has been made by disabled people for many years
  3. The Convention coming into force does not mean that advocacy among people with disabilities should end. This is just the first phase, which ensures a global standard for approaching disability as both a development and a human rights issue. The next phase of work is to ensure that the UNCRPD and other domestic laws are implemented to serve people with disabilities
  4. The coming period will require concerted efforts to ensure that sufficient resources are made available for full implementation of all relevant laws.

Personally, Ms. Manombe-Ncube has hope for an improvement in the situation for disabled people. Deep-seated negative attitudes are still harmful, and she drew particular attention to the sexual exploitation of women and girls with disabilities. As long as they are excluded from mainstream women’s organizations, or even organizations of disabled people, they remain more vulnerable. For mainstreaming truly to make a difference, then, unrecognized discrimination among the groups trying to change things must also be uncovered and erased.

4.1.2 The role of media in perpetuating or removing discrimination
Speaker: Sorious Samura, journalist and filmmaker

On the day that you read this, in many parts of Africa a woman who gives birth to a disabled child does not need to be told what will follow. She will be called a witch, or evil, or a she-devil. She may be publicly humiliated with her newborn baby and may be stoned to death. Her husband may even join in and his family will immediately disown the baby. When news of this reaches the local media, they will run stories like “Witch stoned to death” or “Another evil one bites the dust.”

These words from Sorious Samura, an award-winning journalist and filmmaker, reflect his grief at the situation for people with disabilities and their families in Africa, “this demanding continent of ours.” Originally from Sierra Leone, Mr. Samura described how he had grown up believing that people with disabilities had special, evil powers.

When he attended high school in Freetown, he and his friends heard that a school for what they called the mentally retarded was being built nearby. The schoolboys used to stone the builders, and when that didn’t work, they beat the children who attended the school. Believing that disabled people had evil spiritual powers, the boys beat them twice as brutally as they would have hit anyone else.

Nowadays, Mr. Samura believes, thinking in the cities has progressed, but beliefs in the rural areas are still as ignorant. And as long as the media portray the views of the attackers rather than the victims, this ignorance will remain unchallenged.

“I am now lucky enough to be a journalist who has a voice to speak up for the innocent,” Mr. Samura said. Living now in Britain, he has come to see another view of disability, where disabled people have jobs and lives and support. The laws that protect people with disabilities in the UK can only be dreamed about in most African countries, even with the new Convention.

The Western media, however, deals with disabled people by ignoring them, believes Mr. Samura. Although they are not thought to be evil, they face another kind of discrimination: they don’t ft into the modern agenda of celebrity, sport and body image. Beckham or James Bond, Naomi Campbell or Britney Spears – disabled people still don’t ft the bill.

To change this, those in the media who care about the situation must tell powerful stories about what is really happening. By making people imagine what life with a disability is like, the media can inspire them to put themselves in a disabled person’s shoes and walk a mile in them.

For disabled people not to be thought of as “other,” they must also tell their own stories. That is why Mr. Samura is proud to be part of Young Voices, the Leonard Cheshire Disability project to empower young people with disabilities in 18 countries to campaign for ratification and implementation of the UNCRPD. At this conference they have been trained to use video cameras, which they will then take home to film the activities of the Young Voices groups in their countries.

By telling their own stories, the Young Voices participants can help other people understand what their individual worlds are like, and inspire people through their own stories, not for sympathy but for respect. They have already inspired him, Mr. Samura says, to continue his own fight to give voice to the voiceless majority in our world.

4.1.3 Countering discrimination in the social sector
Speaker: Javed Abidi, Honorary Director, The National Centre for Promotion of Employment for Disabled People (NCPEDP), India

“In Latin America, less than a third of countries have their constitutions available in Braille. For them, blind people are not citizens.” − Maria Verónica Reina, Executive Director, Global Partnership on Disability and Development, World Bank

Armed with a journalism degree from an American university, Javed Abidi returned to his native India eager to start work. To his surprise and dismay, it took him six months to find a job and many people told him he had chosen the wrong path. Now Director of the National Centre for Promotion of Employment for Disabled People and Secretary of the Commonwealth Disabled People’s Forum, as well as a respected journalist in India, Mr. Abidi believes these problems were a direct result of discrimination.

Mr. Abidi is now dedicated to breaking down stereotypes of disability. He has headed a campaign in India to ratify the UNCRPD, but met with resistance from some quarters of society and government, which wanted to wait until other countries ratified it first. This, too, he asserts, was a result of entrenched discrimination, but he is proud that campaigners were able to overcome it, and India became the seventh country to ratify on 1 October 2007.

Mobilizing this campaign has also helped influence other government initiatives. India is now implementing its 11 th five-year plan, which includes a national budget. The plan now has a chapter on disability, meaning that disability has moved from being the responsibility of the Ministry of Social Justice to being an implicit part of every arm of government. All ministries now need to look at what they have to do and must move away from stereotypes. For instance, access to education has become a fashionable cause, but now the government must also consider things such as access to sport, access to information technology and access for women.

There is still a long way to go in India, however. Considering the education sector, not a single one of India’s over 300 universities is wheelchair accessible, and not one is accessible for visually impaired students, except for a few textbooks in Braille. Of the thousands of websites now produced in India every year, only six or seven are accessible for visually impaired people. Most deaf people in India never make it to university because deaf children are lucky to get even the most basic education.

This is changing, however. Having recently forced the Ministry to take up the issue, there is now a very clear plan called 2020, which is being implemented in a few universities. Soon some ramps and more accessible software will be installed.

In cities, access has improved in general. For instance, the Delhi metro is totally accessible, new buses will be accessible and many public buildings have ramps. Unfortunately, some other Indian cities cannot match this and the situation in rural areas usually remains poor.

In employment, a law guarantees that 3% of government employees must have disabilities and this, with strong support for the Prime Minister, has resulted in many more disabled people joining the civil service. Last year, for the first time, a blind person became an administrative officer and a deaf person became an Indian Foreign Service Officer, indicating that people with disabilities are entering higher levels of government administration. Unfortunately, there are still no similar laws, policies or incentives relating to the private sector.

Working in parallel to improve opportunities for disabled people is key, contends Mr Abidi. In India and in many countries, there is a lot of catching up to do. People talk of issues around IT, health, women and children in isolation, but only by working in harmony will we reach our goal. Policy, including firm laws, monitoring and evaluation is the only way out of the current situation.

4.2 Workshops

4.2.1 Directing traffic on a two-way street – Workshop 1: Filling the gaps between policy and practice in human rights
Speakers: Charlotte McClain-Nhlapo, Senior Operations Officer, World Bank, USA, and former South Africa Human Rights Commissioner, South Africa Josephine Sinyo, Law Reform Commission, Kenya

Policy and practice form a two-way street – each should influence the other. As Ms. McClain-Nhlapo asserts, participation of people with disabilities in both policy and practice is an essential precondition for sustainable inclusive development.

In this workshop, Ms. McClain-Nhlapo went on to outline how, if development programs apply the clearly defined values and provisions of the UNCRPD, development will be inclusive. Inclusive education is a potent example of how this interaction between policy and practice can work, and the UNCRPD provides the framework to make that happen.

Government structures, institutions and decision makers can also be part of ensuring that laws and systems are aligned with the tenets of the UNCRPD. Such changes should be inclusive and offer accountability. Beyond this, there must be participation and empowerment of people with disabilities themselves, to influence lawmakers and policy. Poverty Reduction Strategy Papers (PRSPs) and the Millennium Development Goals can also be instruments for implementation and policy dialogue towards inclusive development.

Many actors in the disability field – from governments to NGOs – are increasingly making a qualitative shift from a welfare approach, which was often based on charity, to a moral commitment towards empowerment and development of all founded on the UNCRPD. There are many benefits to this approach, including:

  1. It is legally enforceable
  2. It identifies the duty bearers
  3. It empowers the right holders.

To develop policies based on the rights-based approach at all levels, states need to build their own monitoring and evaluation capacity. A robust civil society creates the demand for this approach, as does the engagement of national human rights institutions and members of parliament. Working through a country’s courts, as well as international networks and partnerships, also facilitates the interaction that influences policy development. Workshop participants stressed the importance of ensuring that people with disabilities are involved in this monitoring process, including through involving disabled people’s organizations in policy development.

Within the UNCRPD, Article 33 addresses national implementation and monitoring, while Article 34 establishes a Committee on the Rights of Persons with Disabilities. The Optional Protocol also establishes two procedures to strengthen the implementation and monitoring of the Convention: the individual communications procedure, and an inquiry procedure.

Using the above measures, the process of making the UNCRPD operational demands a clear and coordinated approach to its implementation. In addition to political will, they highlight the importance of a “no gap policy” in which laws, practices and social policy interact. This method also recognizes that even good policies can be misconstrued and create further barriers for persons with disabilities, particularly in relation to social services.

In light of these considerations Ms. McClain-Nhlapo outlined what she considered to be the elements of effective policies. They are:

  1. Aligned with the tenets of the UNCRPD
  2. Developed in conjunction with disabled people’s organizations
  3. Built on best practices
  4. Premised on reliable data
  5. Implemented by systems and institutions
  6. Allocated adequate resources
  7. Monitored and evaluated.

For everyone involved in turning policy into practice and vice versa, the process is a learning curve, often on a step-by-step basis. To make the most of the multiple entry points into the process, we need to create forums where practitioners and policy makers can share experiences, identify the gaps, adapt what does not work and find a shared and effective strategy.

Recognizing that the interaction between policy and practice takes place across a range of arenas, the workshop participants called for six action points to facilitate the process:

  1. Develop strategies to ensure independent and continuing monitoring and evaluation of people with disabilities’ satisfaction with their involvement in policymaking. This includes the extent of consultation with, contribution to and consequences of, the inclusion of disabled people’s organizations in development of policy initiatives
  2. Identify where we can leverage opportunities to build mutual capacity, create awareness and build strong regional and international networks to bridge the gap between policy and practice. Such networks would include disabled people’s organizations, service providers, governments and others
  3. Source and share evidence-based tools and best practices that will assist in translating policy into practice, such as the Inter-Parliamentary Union Handbook on the UNCRPD. Those involved can also share previous initiatives that might parallel this Convention’s journey, such as items developed to implement the Convention on the Rights of Children
  4. Develop specific tools to support independent monitoring and evaluation of the UNCRPD, along the lines of the African Gender Development Index and People’s Budgeting
  5. Identify methods and approaches that reach, engage and educate people to take action at the local level
  6. Ensure the review of all relevant legislation at the national level, to ensure alignment with the UNCRPD.

Inclusive education is a potent example of how policy and practice can interact to create inclusive development programs. The Millennium Development Goals can also be instruments for dialogue between those who implement them and those who create policies around them.

4.2.2 From quotas to targets – what works to promote employment? – Workshop 2: Discrimination and employment quotas
Speakers: Barbara Murray, Senior Disability Adviser, International Labour Organization, Geneva
Javed Abidi, Honorary Director, The National Centre for Promotion of Employment for Disabled People (NCPEDP), India

What works and what doesn’t in employment quotas? In this workshop, both speakers addressed these questions in relation to systems used in different countries. Put simply, such programs require that employers hire a certain percentage of people with disabilities. The quotas may take various forms, however, including:

  1. Binding quotas backed up by sanctions
  2. Binding quotas not backed up by sanctions or another effective enforcement mechanism
  3. Non-binding quotas based on a recommendation.

In some countries, quotas are set by legislation or regulations requiring employers to reserve a certain proportion of jobs for people with recognized disabilities. If employers do not fulfill this obligation, they may be required to pay a contribution into a central fund used to promote accessibility in workplaces or for vocational rehabilitation. Countries with this type of legislation include many in Europe such as France, Germany and Italy, as well as several in Asia, including China, Japan and Thailand.

Quotas were originally introduced to promote employment for people who became disabled in industrial accidents, and in particular to promote employment for disabled war veterans after the First World War. The laws were based on the assumption that they addressed workers at lower ends of the economic scale. They also assume that disabled people will have lower productivity than other employees, and they make no provision for retraining.

Reflecting an underlying understanding of disability as a matter of impairment, these laws are rooted in the medical model. Enforcement mechanisms often gave the impression that people with disabilities could not be employed on merit and, in some cases, implied that not to meet the quota obligation was a criminal offense.

More recently, some countries (France, for example) have tried to improve quotas’ effectiveness by focusing on the removal of social barriers in the workplace. 24 They also provide a wider range of options for employers, including on-the-job training and apprenticeships.

In a quota levy scheme, such as those in France and Germany, employers may partially meet their quota requirements by contracting for service provision or production with sheltered workshops. Skills among employees remain an issue: in Germany, the quota was recently reduced from 6% to 5% because there were not enough disabled people with the requisite skills available.

Monitoring makes quotas more effective. © Jenny Matthews/ Leonard Cheshire Disability.Binding quotas with no legal enforcement mechanism, such as in the UK and Thailand, have largely failed: they have now been abandoned in the UK and reviewed to improve effectiveness in Thailand. A non-binding quota system in the Netherlands was also found to be ineffective and was abolished.

Binding quotas with no legal enforcement mechanism, such as in the UK and Thailand, have largely failed: they have now been abandoned in the UK and reviewed to improve effectiveness in Thailand. A non-binding quota system in the Netherlands was also found to be ineffective and was abolished.

India has had a negative experience with quotas, having established a 3% mandatory quota for government employment in 1977. In a study conducted by NCPEDP in 1999, it was found that only 0.5% of government employees had disabilities.

At first, the Indian quotas only covered the lower end of the job market, which, similar to the early European quotas, implied that disabled people were not capable of working at the higher end. Additional job categories within government jobs were added to the program in 1993, but there were still no penalties for non-compliance.

This approach has not been very effective; for instance, a court case was brought against Delhi University because no disabled people were employed there, despite the improved regulations. The court banned any future hiring at the university until this problem was resolved.

The Indian government has also used incentives to promote employment of people with disabilities in the private sector. It had been assumed that multinational companies would follow employment practices from their home countries, but this has proven not to be the case.

During the workshop, Javed Abidi made the case that incentives need to be coupled with anti-discrimination policies and stringent penalties for employers who do not hire qualified applicants because of their disabilities. These two approaches together, he contends, will create an enabling environment for employment of people with disabilities. Both speakers also emphasized that education, through inclusive education systems rather than special schools, and promoting equal access, must also be considered as necessary to promoting employment.

Many workshop participants from Africa were not sure what they could learn from the experiences in Europe and relatively more economically developed countries in Asia. Mr. Abidi responded that quotas’ effectiveness revolved around the system that is adopted and, despite previous problems, he believes that there is no substitute for quotas. One prerequisite to success, he proposed, is having stringent monitoring mechanisms.

Ms. Murray added that quotas have sometimes developed a negative connotation and that non-discrimination provisions in the UNCRPD would transform them into targets. Also, quotas can be expensive to administer, so study would be needed to find out which type yields more jobs in developing countries’ informal employment sectors, which are often the largest segment of their economies.

When countries consider which quota systems have succeeded elsewhere and which they should adopt, they need to consider the following issues:

  1. Which people with disabilities should be targeted by a quota system?
  2. Should they adopt a standard or a varying quota?
  3. What percentage should the quota incorporate?
  4. Should it cover:
    1. All employers or just medium and large employers?
    2. All regions and sectors or just some?
  5. What options should be open to employers?

Quota systems have tended to succeed when they have been planned in consultation with employers and taken their size and distribution into account. Examples include Austria, where the compensatory fund is administered by a government ministry, which calculates and informs employers of how much they owe, and France, where it is managed by an association of employers, workers, and persons with disabilities. In Poland, tax collectors may collect and distribute levies owed to the national fund from employers, without a court decision.

Trade union support is also important, as is an effective legal base for enforcement and relatively simple monitoring and administration procedures. Offering different options to employers also helps make the system more robust.

Debate now centers on what quota rates should be, and the fact that many employers seem to prefer making a compensatory payment. The overall message conveyed by quota systems about disabled people’s capacity to work may not ft with current thinking in the disability field, possibly leading to an uneasy fit with non-discrimination laws.

After spirited discussion, workshop participants identified the following action points:

  1. Stringent monitoring mechanisms are needed to make quotas work
  2. It is necessary to work with employers to develop their awareness of people with disabilities
  3. Focus on enterprise development in developing countries and make these inclusive from the start Emphasize targets rather than quotas
  4. Quota legislation needs to be revised and brought into line with anti- discrimination measures within the UNCRPD.

4.2.3 Social barriers are a more powerful block than economic considerations – Workshop 3: Tackling discrimination in employment
Speakers: Alexander Tetteh, Ghana Society of the Physically Disabled, Ghana
Sophie Mitra, Assistant Professor, Fordham University, New York, USA

In every country in the world, disabled people have lower employment rates than non- disabled people. They also often earn less money. One reason for this, according to the speakers at this workshop, is deeply ingrained discrimination. Exploring studies on disability and employment in Ghana and India, the workshop used these as an entry-point into how lessons learned could inform fair employment initiatives there and elsewhere.

In a wide-ranging survey of employers, people with disabilities, the government and NGOs in Ghana, Alex Tetteh found that 95% of employers did not have a disabled person on staff. It is estimated that people with disabilities comprise approximately 7−10% of Ghana’s population, leading to the conclusion that disabled people are under- represented in the workforce. The study found a number of reasons for this:

  1. Workplaces are not accessible or lack adaptive equipment
  2. Some disabled people did not disclose less obvious impairments for fear of discrimination, which might skew the statistics
  3. Some families unfortunately also discriminate against their relatives with disabilities, perpetuating a cycle of lack of employment and access.

Among those in work, the study also found that a staggering 92% of disabled people reported facing discrimination in the workplace from other colleagues or employers. This discrimination can lead to underemployment, when disabled people are not given challenging tasks that would help their careers to progress. A 2002 study by Thomas and Hlahla echoes this, finding that social barriers deterred people from seeking job opportunities, such as promotions.

Conversely, 78% of employers reported that the turnover of people with disabilities in their organizations was low compared to that of other workers. While this implies some stability for disabled people, it may also be a side effect of the discrimination faced when trying to find a new job.

Everyone deserves the opportunity to earn a living. © Jenny Matthews/ Leonard Cheshire DisabilityPerhaps unexpectedly, given the other findings, the study showed that people with disabilities tend to have higher educational attainment than the population as a whole. Sadly, in light of the other statistics, this may be interpreted as a further indication of discrimination, since people with more educational qualifications usually have more job opportunities, not fewer.

Overall, the study concluded that social barriers (discrimination) are the main cause of unemployment among disabled people in Ghana, with access problems making the situation worse. Further research should therefore study how the social and physical work environment could be altered, to help it support disabled people in the workplace.

Mr. Tetteh also recommended that national disability legislation be strengthened, to focus on helping people find and remain in employment. This could be achieved in part by an expert body to advise employers, and a national awareness campaign to sensitize managers about disability and encourage disabled people to request the support they need.

Half a world away in India, a study in 15 villages in Tamil Nadu by Sophie Mitra and her colleague Usha Sambamoorthi, set out to find out whether, and by how much, disability impacts on wages for rural work. Their research is timely because India has had the Persons with Disabilities Act since 1995, which reserves 3% of places in government employment, government educational institutions and poverty alleviation programs for people with disabilities. It also developed a program to pay unemployment allowance to persons with disabilities registered with the Special Employment Exchange for more than two years, and who could not be placed in any paid occupation. In 2002, the employment rate for people with disabilities across India was only 60% of that of persons without disabilities, indicating that the Act’s goals have not yet been reached.

The research studied households that both did and did not include people with disabilities, and also gathered data on the type and extent of people’s impairments. Questions on education levels, work experience and caste were included to refine the data. Findings were unequivocal: unadjusted hourly wages were 11% lower among persons with disabilities compared to those without disability. Results reported in another paper suggested that disabled people might fare worse than their non-disabled counterparts when it comes to accessing employment.

In a rural setting, a gap of this size is significant for individuals and families. To provide full economic equality for people with disabilities, it would need to be addressed by government policy. Dr. Mitra contends, however, that we simply don’t know what policies best impact on the deeply embedded attitudes that contribute to such unequal treatment. Policy makers and researchers alike should thus focus on understanding this important issue.

Together, workshop participants called for the following action points to combat discrimination in employment:

  1. Campaign for the appropriate national legislation on the employment of people with disabilities
  2. Robust data and longer-term research are needed to keep the momentum going and promote employability among people with disabilities
  3. Everyone involved – employers, policy makers, and people with disabilities themselves – needs education and sensitization on this issue.

4.2.4 When the line between victims and perpetrators is blurred – Workshop 4: Discrimination in emergency situations, a consideration of policy and practice
Speakers: Dr Maria Kett, Assistant Director, Leonard Cheshire Disability and Inclusive Development Centre, University College London
Daintowon Pay-bayee, Student and Young Voices Participant, Liberia Bekele Gonfa, Director, Landmine Survivors’ Network, Ethiopia

Who deserves more support after a conflict: a man who lost a leg in combat or a child disabled by polio because of disrupted vaccination services? Both deserve whatever support they need, argued Dr Maria Kett in her workshop presentation, Disability, Discrimination and Conflict: What happens next?

This issue has become urgent in Sierra Leone and Liberia, which both suffered violent conflicts in the 1990s and now face similar pressing problems. In both countries however, some international responses to the conflicts and recovery may inadvertently favor the former soldier over the child.

Dr Kett argues that this imbalance can be caused by discrimination, albeit often unintentional. Particularly in the acute emergency phase, humanitarian responses may simply not take disabled people’s needs into account. Examples of this might include inaccessible sanitation facilities within displaced people’s camps, and food distribution in areas that are difficult for disabled people to access. This and the “special needs” approach, which may not address disabled people directly, does not work, contends Dr Kett. Disability must be mainstreamed in humanitarian aid, so that all areas of emergency intervention become accessible to everyone, regardless of any disabilities.

This is particularly crucial in countries where disabled people are already openly discriminated against, as in Liberia. Workshop speaker Daintowon Pay-bayee described how disabled people were sometimes killed by civil war soldiers “to end their suffering.” In one case, some blind people became abandoned between two warring factions when the priest who was running a center for blind people was abducted by the rebels, and some were killed. Survivors managed to reach a Catholic compound where they met with government officials, who arranged a ceasefire to allow the blind people out, and called on the rebels to stop killing people with disabilities.

Given this level of human rights abuse, in and after civil conflicts it may not be useful to make a distinction between people who are or are not deemed to be vulnerable. Dr Kett argues that in civil wars, for instance in Liberia, the lines between ex-combatants and civilians, and between victims and perpetrators of violence, are not always clear. While not denying they have a role in the immediate post-conflict period, rather than spending vast amounts of money on projects to reintegrate or rehabilitate wounded former fighters (which rarely include disabled people), it may be more effective to use donor funds for broader development programs, such as inclusive job creation, infrastructure development and other priority projects.

For example, in the immediate aftermath of the conflict in Sierra Leone, many NGOs focused on the very visible war wounded and amputees, offering rehabilitation services, prosthetics and resettlement camps. Because they were often located some distance from urban areas, it was difficult for people living in them to find work or go to school, leaving such programs unsustainable in the long term.

Yet Dr. Kett’s research has shown that people who were not wounded by the war, but perhaps became disabled because of disrupted health services, prefer to live in such communities. One group of people with polio in Kono, Sierra Leone, even started their own community to support each other, all of which suggests a lack of service provision for this group.

In Liberia, people with visible impairments are assumed to be former combatants who “deserved what they got.” Yet in reality, it is often impossible to judge how someone came to have impairment. None of the country’s disarmament, demobilization and reintegration programs had a disability component in the early stages.

This has, in part, left disabled young people with little option but to beg on the streets of the capital, Monrovia, and sometimes to be denied access to social services and development programs, regardless of the cause of their disabilities. This comes in the wake of a survey by UNICEF and Liberia’s umbrella organization for disability that found that in some parts of the country, 16% of the population is disabled.

If aid programs perpetuate the idea of deserving victims, they may ultimately hinder broader inclusion in future development. Donors and implementing agencies must therefore rethink how aid money is allocated in the field, as highlighted in Article 11 of the UNCRPD. In a conflict or post-conflict country, the starting point is that everyone must be considered affected.

Ms. Pay-bayee echoed another point made by Dr. Kett: many countries, including Liberia, still have no disability rights legislation and thus no opportunity for legal redress. This is unlikely to change soon in Liberia, considering that the 2008 census did not include any questions about disability, and the country will have no statistics to use in planning service provision or formulating new laws.

There is also outright discrimination there against disabled people in employment. People may be turned down for jobs because of their disability, rather than considered in relation to their qualifications for the position. Even within an NGO setting, Ms. Pay- bayee has experienced being ignored in meetings until she protested, at which point people listened to her comments, but did not record them.

For this reason, Dr. Kett concluded that it might be beneficial to form an inter-agency committee on disability at UN level, which specifically addresses the needs of disabled people in and after emergencies, and gives guidelines for humanitarian organizations. This would help facilitate equality of treatment and opportunity for disabled people, both during and after an emergency. One of Dr. Kett’s main points is that the stages within a conflict – from pre-conflict, to active conflict, to post-conflict – are hard to separate, and this gets even more difficult once the acute emergency phase settles. Conflict is therefore best seen as a continuum, and responses should be tailored accordingly.

This was carried further by Bekele Gonfa, Director of the Land Mines Survivors’ Network in Ethiopia, who contended that landmine survivors need psychosocial as well as physical support at the time of injury and afterwards. His organization has found that a multi-faceted approach works best, including support for:

  1. Physical needs such as worry over physical appearance
  2. Emotional needs such as depression
  3. Social needs such as acceptance and inclusion in the wider society
  4. Economic needs.

This integrated strategy helps people deal with current problems and plans for the future, and involves family members, friends and the wider community. Peer support, normally within a school or university, is their preferred way to achieve this for younger people.

The disabled person needs special care and attention at the time of the trauma, and issues have to be addressed particularly urgently at this initial stage. Interventions should be conducted not by professional counselors, but by other people who have gone through the same trauma and finally succeeded in getting their lives back on track. These peer supporters could be volunteers or trained persons who can help by mentoring, listening, sharing their own experiences or counseling, as well as referring people to other support initiatives. Some peer supporters also work in hospitals, when their experience can be extremely helpful to people with new injuries.

Helping people access their rights is one of the program’s ultimate goals. It includes training about basic rights, help in claiming them, providing information about disability law and policies, and help with reintegrating people with disabilities into the community.

The impact of the whole program can be profound, supporting people to continue with their lives socially, personally and economically. They often find it necessary to reassure people that they can still marry, have children, support themselves and their families and pursue various careers and other activities. Those receiving support can also go on to become peer supporters themselves.

Peer support is less effective with people who have lived with the injury for many years, or have become dependent on others or support programs. This is also true for people with mental health problems and secondary traumas, such as family or economic problems. Finally, it should be very clear that peer support is neither the only remedy nor a replacement for other services, such as medical care and rehabilitation.

Mr. Gonfa recommends that every government include the peer support approach in its recovery and rehabilitation programs for people with disabilities. They can also encourage various service providers to run such services and fill the gaps.

Recognizing the importance of making humanitarian aid and support inclusive from the start of an emergency, workshop participants called for governments and other organizations to take action on the following issues:

  1. Mainstream disability in humanitarian aid programs, both before and after conflicts and other emergencies, to remove unintended discrimination against people with disabilities
  2. Consider pre- and post-conflict situations as a continuum and support people with disabilities throughout development interventions
  3. Post-conflict countries such as Sierra Leone and Liberia must ratify the UNCRPD and act on it
  4. Aid and money should go to families as well as individuals in conflict situations
  5. Invite people to see for themselves the richness of disabled people’s lives, including people who don’t share our views, so that they can change their attitudes
  6. The UN must follow its own rules
  7. Focus on and include learning disabilities in guidelines for emergency situations
  8. Ensure that Article 11 in the UNCRPD is followed, and also look at other articles when considering long-term rehabilitation.

4.2.5 Lack of education: a major cause of social exclusion – Workshop 5: Perspectives on discrimination in the education sector
Speakers: Professor Xiaoyuan Shang and Jiawen Xie, Institute of Social Development & Public Policy, Beijing Normal University, China
Ambrose Murangira, Chairman, Uganda National Association of the Deaf, Uganda

The personal stories of two young people in different countries both raise the same question: what keeps children and young people with disabilities out of formal education? In general terms, the titles of this conference’s key clusters – lack of access, poverty and discrimination – offer a fairly complete answer. On a personal level, the daily indignities caused by discrimination can be the most discouraging problems for potential students and their families.

This was borne out by Professor Shang’s research in Jiangxi Province, which found widespread discrimination against disabled children. In this workshop, Professor Shang described how China has approximately five million disabled children, 80% of whom live in rural areas with poor services. Among abandoned children in state children’s welfare institutions in large cities, approximately 90% have disabilities.

The current support system for disabilities in China assumes that the main unit of support is the family. Yet fast-moving and broad demographic and social changes have reduced families’ capacity to care for children with disabilities. This has not yet been supplemented by the public sector, and provision for disabled children in practice is rudimentary.

One effect of this is that the ratio of children with disabilities who are illiterate or do not attend school is much higher than that of children without disabilities. This is even worse in urban than in rural areas.

Professor Shang contends that for children with disabilities to achieve their right to an education, a child disability rights framework is needed, and her study explains how this might work. A framework would cover:

  1. Right to life, protection and care, including the right to live with their family
  2. Right to economic security through economic activity, social security and welfare provision
  3. Development rights to health, education and disability support
  4. Participation rights.

Set in a small, poor rural county in Jiangxi Province, the study explored whether disabled children receive any public support and measured discrimination against children with and without disabilities. The qualitative research began with an in-depth investigation of Maomao, a 15-year-old boy with a physical disability and epilepsy. There were also repeat visits with several other families of children with disabilities, which included in- depth interviews with the children’s parents, teachers, classmates and other relevant people.

Looking at Maomao’s situation within each of the pieces of the framework, he was discriminated against from the beginning within his own family, who sent him to live with his grandmother rather than care for him with his brother at home. His right to economic security was not met, because the family’s poverty meant that they did not pay for special education and disability treatment, which may have contributed to the failure of his schooling.

In a mainstream school, Maomao experienced discrimination in attempting to exercise his right to an education. These included access problems, lack of help and, at worst, neglect. In China, discrimination against children with disabilities in schools could be attributed to the current performance evaluation system conducted in education sectors, thereby denying them the third piece of the framework.

After years of teasing, accusations of time wasting and other blocks to his learning, Maomao has now withdrawn both from school and other children. With few friends and poor communication skills, his right to participation has been curtailed. The impact of social discrimination on his personal development has been large in terms of his behavior, cognitive ability, and possibly physical capabilities.

Cumulatively, this discrimination has worsened the outcomes for both the child and his family as he has grown older. Chinese law expressly prohibits discrimination against children with disabilities, but without formal support for families, children are placed at risk of serious neglect and a lifetime of social exclusion. Professor Shang’s study concludes that the implication for policy development is that a combination of support for families, access to mainstream services and specialist care is required for disabled children to experience equal rights.

Many similar observations were then made by Ambrose Murangira from Uganda, who was born hearing, but became deaf as a result of having mumps at age 10. Mr. Murangira now holds a BA in Social Work and Social Administration. He is pursuing a master’s degree in Social Sector Planning and Management and is very involved in disabled people’s organizations in his country. His situation could have been very different however, were it not for his and his mother’s determination.

Special schools in Uganda for deaf children have a low standard of teaching and learning. For instance, when 30 deaf children from a special school took primary leaving exams in 2007, not one passed the first level exam. Mr. Murangira decided to stay in mainstream school and managed to pass his primary examinations. After an aborted attempt at becoming a shoemaker, which he hated, he decided to go to a mainstream secondary school. Since there were no sign language interpreters available, he always sat in the front row and copied notes from a friend. To challenge himself further, he transferred from a rural to an urban school for the final two years.

Discrimination was at the heart of why Mr. Murangira decided to stay in mainstream school, and why he had problems studying there. Had he joined a special school for deaf children, he worried that he would lose his friends and fail his exams. Choosing to advocate from within in a mainstream school, he did sometimes feel left out because of language problems. Teachers would ask other students to give him information and he would see other students enjoying a laugh and not be able to join them. Once, he was even listed as “Deaf” in the school sports team.

Now on track to become one of the only deaf people (approximately 600,000 of Uganda’s 30 million people are deaf) in his country to hold a master’s degree, Ambrose called for people with disabilities to be represented at all levels of student governments and organizations. Without this kind of integration, he contends, discrimination will not end and thousands of people will lose their opportunities for education and advancement in society.

Taking the conclusions of both of the speakers into account, workshop participants called for the following:

  1. Parents should be involved in making government policy
  2. Organize parents to be involved in decision making
  3. Advocacy and lobbying are needed to help existing education systems change to include children with disabilities, and prevent abuse
  4. Lobbying in specific fields can include pressure to develop national or international sign languages
  5. People with disabilities should be represented within student bodies
  6. Specialized departments should be created within learning institutions, to support learners with disabilities
  7. African universities need support to establish campus offices (under the supervision of the Dean of Students), responsible for disability affairs as well as recruiting qualified personnel to mainstream disability issues.

China has approximately 10 million disabled children, 80% of whom live in rural areas with poor services.

When 30 deaf children from a special school took primary leaving exams in Uganda in 2007, no one passed the first level exam.

4.2.6 Recognize the paradigm shift – Workshop 6: Implementing other UN Conventions: lessons learned
Speakers: Monica Mbaru, Programme Manager for Africa, the Kenyan Section of the International Commission of Jurists, Kenya
Gerison Lansdown, International Child Rights Consultant, Save the Children UK

We have today, contends workshop speaker Monica Mbaru, “consensus that the ban against discrimination based on sex, race, nationality, religion, ethnicity or any other status is now a peremptory norm of international law practice and application.” This agreement comes thanks to previous UN human rights conventions, including the Convention on the Rights of the Child (CRC) and the Convention on the Elimination of All Forms of Discrimination against Women (CEDAW). The question now is: how can the UNCRPD use the experience gained in implementing these huge advances in the practice of human rights law and other forms of social change to improve the situation for people with disabilities?

The first step is to recognize the paradigm shift embodied in Articles 2 and 5 of the new convention, from considering people with disabilities as objects of charity, to citizens with rights and the ability to make decisions based on informed consent.

When using the new international Convention in cases relating to people with disabilities, it is important to remember that it transcends national laws, which may even contradict it. In Nigeria and Tanzania, for example, there are laws that prohibit discrimination on the basis of gender. Other laws, however, allow men to confer citizenship on their foreign spouses through marriage, but do not allow women to do the same. This kind of contradiction is directly contrary to CEDAW and, from a legal point of view, should not exist. As such, it is an issue that gender equality campaigners in those countries could address, and from which disability campaigners can learn.

Article 4 of the International Covenant on Civil and Political Rights, which came into force in 1976, already requires “Equality of treatment… without distinction of any kind…” This should make current human rights abuses against people with disabilities, such as denial of educational opportunities, segregation and imposition of physical barriers, illegal now. Since we know that these discriminatory practices still occur, Ms. Mbaru believes that the way to make a UN Convention effective is to ensure that national laws that follow it are fully applied. Infringement of rights must incur penalties, and courts need to be sensitized to understand the implications of the new Convention. All of this applies specifically to effectively implementing the UNCRPD.

Gerison Lansdown then explored how lessons learned from implementing the CRC may be applied to the UNCRPD. Like the UNCRPD, the CRC was ratified very quickly, which lent force to the idea of children’s rights as a human rights principle. Globally, it benefited hugely from a UN body, UNICEF, adopting the CRC as its mission. Being present in every country in the world, UNICEF can work closely with governments to support the CRC’s implementation.

A group of international NGOs, the NGO Group for the Convention on the Rights of the Child, also established itself in 1983 to seek to influence the drafting of the CRC. After it was adopted in 1989, the group switched its focus to monitoring and implementation. It now works to:

  1. Raise awareness of the Convention
  2. Promote and facilitate implementation of the Convention
  3. Facilitate communication between the Committee on the Rights of the Child and the NGO community
  4. Promote cooperation and information sharing on the CRC within the NGO community
  5. Draw up policies and strategies and undertake action in fields covered by the Convention
  6. Contribute to the monitoring work of the Committee on the Rights of the Child
  7. Facilitate the creation and support the work of National Coalitions for the Convention on the Rights of the Child
  8. Develop tools and guides for advocacy
  9. Train and run internships on children’s rights.

The group has made a large impact by supporting NGOs at national level to form coalitions that produce integrated shadow reports to the Committee on the Rights of the Child, the body of independent experts that monitors implementation of the CRC by its state parties. Key international NGOs working with children have also adopted the CRC as their mandate, including Save the Children and Plan International.

In programs for children, the CRC has been influential in developing child rights-based approaches, and an increasing focus on advocacy in place of service provision. There is also a growing understanding among NGOs about the importance of engagement with global institutions.

As an example of how NGO engagement with the CRC works in one country, Ms. Lansdown examined the model used in the UK. In 1992, a dedicated secretariat, the Children’s Rights Development Unit, was established, focused on promoting implementation of the CRC, It gained a membership of hundreds of interested organizations and bodies and has adopted strategies for its members on monitoring compliance, promoting children’s participation, implementation across civil society, raising awareness and advocating for more effective implementation.

Rights cannot be claimed unless people with disabilities, and others who interact with and have responsibility for them, are aware of those rights.

Their policies and research results are fed back to the Committee on the Rights of the Child, providing a two-way flow of information and guidance. The group has also progressed to promoting children’s involvement in lobbying for their own rights, an approach that could be widely used within the disability rights movement to advocate for ratification and implementation of the UNCRPD.

To bring the UNCRPD closer to full implementation using successes and avoiding failures from past conventions, workshop participants called for the following action points:

  1. Ensure that disability issues and rights are recognized, protected and enforced by laws that carry penalties if they are infringed
  2. Ensure full access to national and international courts, because access to justice through the courts is the main vehicle through which the above can be achieved
  3. The UN must provide strong support for ratification and implementation
  4. There is a key role for civil society organizations in monitoring and promoting implementation. To build their capacity for this, grassroots NGOs and disabled people’s organizations need support and information
  5. NGO collaboration at national level strengthens impact
  6. Establishing accountability mechanisms is essential
  7. Self-advocacy is vital in changing attitudes and awareness.

4.2.7 Without pity: Disabled people deserve fair coverage – Workshop 7: The role of media in perpetuating or removing discrimination
Speakers: Bosco Wani, Leonard Cheshire Disability Young Voices Representative, Sudan Richard Rieser, Director, Disability Equality in Education, UK

“Encouraging all organs of the media to portray persons with disabilities in a manner consistent with the purpose of the present Convention…” This quote from Article 8 of the UNCRPD makes it clear: the media must now give disabled people the full range of coverage that they and their work merit.

Historically, this has been far from true. Speaking from a European perspective, Richard Reiser explained how the media traditionally portrayed people with disabilities as pitiable, comic, evil or triumphing over adversity. These stereotypes derive from myths or mistaken ideas from religion and culture, and must be challenged, particularly the outdated belief that disabled people are not capable of living full lives. Bosco Wani added that in Africa, the media has played a major role in perpetuating discrimination against people with disabilities, and added to the denial of human rights.

Both speakers, however, believe that the media portrayal of people with disabilities can change. Most of the negative stereotypes are in fiction – folk tales, stories, plays – and can be repeated in books, films, television and comics. Mr. Rieser28 suggests a multi- dimensional plan for those in the media to change this:

  1. Shun one-dimensional characterizations. Portray disabled people as having complex personalities capable of a full range of emotions
  2. Avoid depicting people with disabilities as always receiving. Show disabled people as equals giving as well as receiving
  3. Avoid presenting physical and mental characteristics as determining personality
  4. Refrain from depicting disabled people as objects of curiosity. Make people with disabilities ordinary
  5. Do not ridicule impairments or make them the butt of jokes
  6. Avoid sensationalizing disabled people, especially as victims or perpetrators of violence
  7. Refrain from endowing people with disabilities with superhuman attributes
  8. Avoid overly positive plots that make the disabled person’s attitude the problem. Show the social barriers that keep disabled people from living full lives
  9. Avoid showing disabled people as non-sexual. Show people with disabilities in loving relationships and expressing the same range of sexual needs and desires as non-disabled people
  10. Show people with disabilities as an ordinary part of life in all forms of representation
  11. Most importantly cast, train and write disabled people into scripts, programs and publications.

Some of these recommendations were developed in reaction to a European Union conference in 2003. Speakers revealed that less than 1% of television coverage included disabled people, despite the fact that 10% of the EU population is disabled. Their portrayal was also predominantly negative.

Twelve disability organizations from nine European countries then created a two-year project and website, with support from the EU Directorate General for Employment, Social Affairs and Equal Opportunities. They held workshops and conferences and helped develop national plans to address these problems. People in any country can benefit from their experience and plans, which can be accessed and downloaded through the website, www.mediaanddisability.org.

Mr. Wani also shared how the Young Voices projects in Africa have used radio to help educate people with disabilities and the general public about their rights. The project started when Mr. Wani visited four towns in South Sudan and identified 3,000 people with disabilities and their family members. To promote changes in attitude towards disability and self-esteem among disabled people, he and the other project participants developed a multi-media campaign in the country. Radio was at its heart because it is the most widely available broadcast medium in South Sudan, and Mr. Wani secured a weekly radio slot to speak on the rights of people with disabilities. This was backed up by dramas on Sudanese state television, as well as posters, T-shirts, public demonstrations on disability rights and targeted articles in newspapers. Mr. Wani and the other Young Voices participants also hope to start a website to campaign for disability rights.

The workshop participants agreed that radio is the best media tool to use for advocacy, particularly in Africa where people may not have as much access to other broadcast or print media. When contacting the media, it is also best to approach editors, as the journalists themselves often have little say when it comes to the subjects they cover.

Participants then came up with a list of recommendations on how to change or increase media coverage of disability:

  1. Study the background of journalists or media outlets when dealing with them – this can be done through sensitization workshops and lobbying their training institutions
  2. Journalists or media that portray disability positively should be recognized and given credit, while those who portray it negatively should be challenged through the media
  3. Make all forms of media accessible to people with any disability
  4. Strategically identify people with an interest in disability who work within the media, to build better partnerships
  5. Target editors when dealing with media outlets
  6. Lobby for the employment and inclusion of people with disabilities in media institutions, and empower them to deal with any discrimination they encounter.

4.2.8 Everyone has the right to serve his country – Workshop 8: Advocacy and campaigning to change attitudes
Speakers: Phitalis Were Masakhwe, Campaigns and Advocacy Manager, Leonard Cheshire Disability, East and North Africa Regional Office
Alexander Phiri, Director, Southern Africa Federation of the Disabled (SAFOD), Zimbabwe

“Seek ye the political kingdom first and all else will follow.” Kwame Nkrumah, first Prime Minister of Ghana, the first African country to become independent

Phitalis Were Masakhwe opened the workshop by asserting that politics – and those who captain the political ship – have the power to override all other forces in society such as economics. The right of people with disabilities to vote and participate in political life was articulated with that of every other adult in the 1948 Universal Declaration of Human Rights. Article 29 of the UNCRPD, which states that governments must ensure that people with disabilities can vote and provide the necessary support, such as accessible polling places and ballots, has strengthened it.

In addition to voting, disabled people have the right to run for elected office, and there have been disabled MPs in Kenya for ten years. For those who do not choose to run but want to influence, the UNCRPD should also make campaigning and advocacy more accessible. One way to be politically active in the field of disability is to work with NGOs and associations concerned with a country’s public and political life, and in the activities and administration of political parties. Another is to form and join disabled people’s organizations, to represent people with disabilities at international, national, regional and local levels.

For a disabled person who would like to enter politics, Mr. Masakhwe asserts that the force of change must be inside oneself; outsiders such as politicians or disability rights supporters can only provide enabling conditions. Potential disabled politicians need to develop the knowledge, experience and confidence for political battle. To help them understand the dynamics and intricacies of politics, he recommends creating enabling conditions through:

  1. Partnership and collaborative action
  2. Regular and consistent disability sensitization of the community and its leadership
  3. Investing in civic and legal literacy and rights education, including lobbying and advocacy skills development of disabled people and their parents/ friends.

Barriers to this enabling process include weak disabled people’s organizations, lack of resources (politics costs money), low education levels and poor self-confidence. To overcome these will require some fundamental changes to a range of institutions that now discriminate against people with disabilities. These include:

  1. Advocacy and lobbying for quotas and other mechanisms, to ensure that everyone can be included in politics
  2. Financial and other material support to candidates with disabilities to run an election campaign
  3. Reforms to enable participation of people with disabilities within individual political parties
  4. Organized effort by the media and other general public to champion political engagement
  5. Support disabled people to be exposed to new knowledge and experience
  6. Support disabled people to realize “their political arsenal.”

Why go through all of this? An international overview of the impact of disabled politicians and disability policy bodies on governance concluded that having disabled individuals in positions of governance is clearly having impact. People with disabilities in government positions also report that legislation and programmatic improvements have aided the situation of disabled people in their respective countries.

Though perhaps less quantifiable, they also list heightened awareness and increased understanding of disability issues among their non-disabled colleagues as another positive impact. Many report that their non-disabled peers have begun to consider all issues through a new “disability lens,” and as a result, they have developed new allies in the fight for equal access and inclusion. They see themselves as role models who could inspire new generations of people with disabilities to enter public service.

Before even being able to begin public action, however, argues the second speaker, Alexander Phiri, embedded attitudes towards disability in the community must change. Even today some cultures kill disabled children, while others are hidden and thus unable to receive support. Perhaps most insidious is discrimination among disabled people themselves, who have internalized other people’s negative attitudes.

The way forward, Mr. Phiri believes, is to begin to change attitudes at the family level and progress to schools and community structures. Working in concert, this attitude change can help tackle the discrimination that might keep people with disabilities from full engagement in political life.

Article 29 of the UNCRPD states: Parties shall guarantee to persons with disabilities, their political rights and the opportunity to enjoy them on an equal basis with others, in accordance with national laws…

4.2.9 Inclusion means working with, not working for – Workshop 9: Youth engagement Speakers: Gayatri Kembhavi, PhD student, University College London, UK Ephraim Segone, Leonard Cheshire Disability Young Voices Participant, South Africa

“What distinguishes this large group of youth are not their common needs, but the fact that these needs continue to go so largely unmet.”  − Nora Groce, Professor, Leonard Cheshire Disability and Inclusive Development Centre, University College London

In Western countries, adolescence marks a gradual progression from childhood to adulthood. In lower income countries, this shift is more likely to be defined by entering the workforce or marriage. Young people who do not work or marry because of disability may then remain in a kind of perpetual childhood, denied the rights and benefits afforded to adults. While the needs of children and adults with disabilities have been widely studied and defined, those of adolescents (aged 13–16 years) and youth (aged 16–19 years), have not.

Gayatri Kembhavi’s research in Bangalore, India, with 37 young people with disabilities, set out to begin to change this by studying what adolescents with physical disabilities themselves believe prevents or facilitates their participation and inclusion in their communities. Using participatory techniques, it also included research with their parents and non-disabled adolescents. Each of the 37 young people was given a camera to record:

  1. Things in their lives that made them happy, gave them a sense of pride or that they enjoyed
  2. Things in their lives that made them sad
  3. Things in their lives that made them angry or frustrated
  4. Things in their lives that they would have liked to change/make different.

They also received some training in how to use the cameras, but were told that they could decide themselves what to photograph. One week later the photographs were developed, and the young people met with the researcher to share and discuss them with the group.

Despite doubts from the NGOs through which the adolescents were recruited about whether they could handle taking pictures, all were able to take usable photographs. Participants then placed the photographs into one of four categories: “Happy,” “Sad,” “Angry/Frustrated” and “Want to Change.”

The adolescents’ photographs mainly focused on family, friends and other important people in their lives. Many participants however, focused on environmental issues and concerns. One adolescent photographed a large pothole in the road as “something that makes you angry,” because it was a major barrier that restricted the mobility of his classmates who use wheelchairs. Other examples of environmental barriers were the stairs leading up to a video game arcade. The participant said that the stairs were an example of “something that makes you sad” and “something that makes you angry,” as they prevented him from being able to engage in an activity that he enjoyed. Another participant took a photograph of an empty lot that was full of garbage, as “something that makes you angry or frustrated.” Seeing piles of waste made him angry about the environment in which he lived, and it was something he would like to change. Other environmental concerns photographed were the over- use of plastics and wasting water.

The adolescents with disabilities commented that they were excited to contribute to the research, and that they were proud to be given the responsibility of using the cameras. Another important benefit of the photography approach was that it facilitated discussion, especially among those participants who were more shy or quiet, because they had something specific to discuss.

Engaging adolescents and youth does not simply involve asking them questions about their lives, Ms. Kembhavi concluded. Merely asking questions constitutes research “on” adolescents, not “with” them. Inclusion such as this will allow adolescents with disabilities to engage with their environments and influence the services programs that exist to help them. It also forms a first step towards the adult roles and responsibilities to which they aspire.

This engagement was also the focus of Ephraim Segone’s presentation. “Aren’t we the public?” he asked, when querying why “public” buildings are not accessible to people with disabilities. As a Young Voices participant, he called on all the young people at the conference and those back in their home countries to say “here we are; we are ready to make changes.”

The title of this conference, “a call for action on poverty, discrimination and lack of access” is, Mr. Segone believed, also a mandate for youth engagement. Moving from discussion to action can be very motivating for young people who have the energy and will to change society. As this conference calls for action, it also implicitly gives an assignment to each Young Voices participant: to fight the challenges that come their way. Unity and collective effort will be important, as will a vision of the desired future. Both have power in themselves, and Mr. Segone looks forward to working with other young people to implement all the things we have discussed at the conference.

Successful adulthood is enhanced by successful participation in adolescence. The World Health Organization defines participation as “involvement in a life situation”.

To support the kind of engagement through which young people can take more charge of their lives and contribute to change for disabled people, workshop participants called on those involved with young people to:

  1. Provide information on the rights of people with disabilities and on the Convention in an accessible way, especially to empower young people with disabilities to claim their rights
  2. Influence disabled people’s organizations to include young people with disability into their membership, and in the design of their advocacy campaigns.

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