People with disabilities face a range of vulnerabilities. Structural factors including norms – the implicit, informal rules that guide behaviours and attitudes – add another layer of vulnerability.

Norms around disability already tend to marginalise people, in extreme cases leading to horrific treatment like murder, or being drowned at birth. Gendered norms often leave women and girls with disabilities facing further layers of disadvantage.

Because of norms around mobility and family honour, they are more likely to be locked inside homes for protection and less able to access appropriate services. Since education for girls is often not considered a worthwhile investment, and even less so for girls with disabilities, they may be taken out of school or never sent to school. And if they don’t marry, they are unlikely to achieve the status and respect that norms dictate are bestowed upon married women with children. 

To ensure that people with disabilities are not left behind governments need to:

• Raise awareness of the role norms play in affecting behaviours and attitudes toward disability at all levels. Community and family members as well as service providers often uphold and further fuel discriminatory norms.
• Build components and language related to norms into programmes and policies on disability, working with others already involved in norms programming and policy.
• Coordinate and resource a unified, cross-cutting approach to disability – it is not the remit of one ministry or sector.
• Appoint champions to fight for recognition of the structural drivers of discrimination, including norms.
• Involve people with disabilities, including women and girls, throughout all of the above to empower them and ensure programmes and policies are fit for purpose.

Social protection will play a key role in reducing poverty and inequality for people with disabilities. But this doesn’t just mean improving their living standards; it’s vital to promote economic and social inclusion as well.

This means promoting employment and income generation – not simply relying on paternalistic approaches that see disability as a decision on a person’s ‘ability to work’ or not. Governments need to rethink ‘conditionality’ for cash benefits to ensure that people with disability are actively included in public works and training programmes, and to support children with disabilities to access education and healthcare.    

In many cases, governments are falling short. ODI’s research in Nepal and Kazakhstan reveals some of the ways that social norms about the causes and consequences of disability, coupled with complex and burdensome administrative procedures, are hindering the delivery of coordinated cash and services packages that meet the specific needs of people with disabilities across the whole range of impairments that they experience.

As a result, people with disabilities often must travel multiple times to different locations to make claims, receive assessment or obtain necessary documentation. They face both physical and attitudinal obstacles to claim their entitlement – exactly the opposite of what they need.

Scientists and development actors alike increasingly recognise adolescence as a critical window of opportunity because of the physical, cognitive, psycho-emotional and social changes that young people undergo during the second decade of life.

But too often adolescents fall through the cracks between policies and programmes focused either on younger children or on adults. Young people with disabilities often face more – and more complex – challenges.

Widespread stigma and discrimination, compounded by under-investment in tailored programming, means that in poorer countries they are much more likely to be out of school. As a result, many feel very isolated and have very limited opportunities to interact with peers with or without disabilities.

Those living in conflict affected contexts are worse affected still, often suffering physical impairments as well as mental ill health as a result of trauma. The statistics are frightening: in Gaza between 30 March and 12 July this year, over 1,200 boys and girls have been hospitalised for their injuries – many of which are permanent. On top of this, security issues tend to complicate their access to services. Many young Palestinians I talked to were unable to reach much-needed specialised care due to military checkpoints and a lack of permission to travel to Jerusalem or further afield.

Adolescent girls with disabilities also face particular challenges. They are more at risk of being confined to the home to ‘protect family honour’. And because they are more vulnerable and less likely to report abuse, they more often suffer violence.

Key priorities for action include: 

• Invest in national and costed strategies with periodic milestones to progressively achieve the rights of young people with disabilities;
• Involve young people with disabilities and their families in programme design to ensure interventions in development and humanitarian contexts speak to their context-specific needs;
• Map existing services for people with different impairment types and share this information widely through health clinics, social welfare offices, schools and online 
• Strengthen social protection services so social workers cross-refer young people in households receiving social assistance to complementary services – like specialised health and education services, accessible recreational activities, counselling or psychosocial support, and vocational training;
• Promote community awareness about the rights of people with disabilities, and especially about protection risks for adolescents – and adolescent girls – and involve police, justice personnel, schools, community leaders and others in strengthening reporting systems.

People with disabilities are often left far behind when disasters strike. They are less likely to receive timely warnings before an event; they find evacuation routes and public shelters difficult to reach or even inaccessible; appropriate care facilities are lacking; and they are at the back of the queue when relief and recovery assistance is given out. They are also highly vulnerable to physical, sexual and emotional abuse during crises.

Disability has become more prominent in the disaster policy agenda over the last few years, and there is now plenty of ‘good practice’ guidance available to disaster managers on how to support people with disabilities. However, if governments want to put these principles into practice and ensure that people with disabilities are no longer left behind, they have to address some key obstacles.

One of these is the continuing lack of good data on the number and location of people with disabilities, the range of their disabilities, their needs in a crisis, or their knowledge, skills and resources for dealing with hazards and disasters. 

Disaster agencies also make very little use of the knowledge and information held by people with disabilities and by disabled people’s organisations (DPOs). Lack of engagement between formal disaster organisations and people with disabilities and DPOs is widely reported, even in countries with progressive disability legislation and relatively high levels of awareness.

To ensure people with disabilities are not left behind, governments need to ensure that better data is being produced.

Underpinning the Sustainable Development Goals’ (SDGs) ambitious commitment to ‘reach the furthest behind first’ is the assumption that we know who these people are, why they remain persistently under-served and how to reach them.

In fact, we know very little about how many people are currently living with disabilities, where they live and what characteristics they share. 

The commonly-cited headline statistic that 15% of the world’s people live with a disability comes from the 2011 World Disability Report, based on data collected between 2002 and 2004 – in other words, it’s some 15 years old. 

And it’s widely agreed that disability is among the most glaring data gaps in SDG monitoring – an issue that has largely ‘fallen off the statistical ‘map’’, notwithstanding the forthcoming UN Flagship Report on Disability.  

Official statistics are invaluable and there are welcome advances, like growing the incorporation of the Washington Group questionnaire into multi-topic surveys and UNICEF’s inclusion of a module on child functioning in its survey tool. But producing the data for comprehensive monitoring within 12 years will be extraordinarily challenging.

In addition to developing official statistics, governments need to bring together unofficial data and to link data sources to cast light on existing gaps.

Here are three steps forward:

• Promote household-survey based measurement and re-establish a repository of disability-related data.
• Assemble diverse evidence on and from persons with disabilities – from civil society organisation programming to crowdsourcing through mobile technologies to analysis of public transport records. Bringing this information together could help to harness its combined impact.
• Pursue creative ways to capitalise on existing data – for example linking administrative data, such as government figures on disability allowances, with household surveys.

Incremental improvements won’t be enough to collect the data needed to monitor the disability-related SDG targets (pdf) – but beginning to fill the data gap can ensure that we target support to make the most impact.