The right to work

ILEP recently contributed to discussions by the CRPD Committee (Convention on the Rights of Persons with Disabilities) about the right to work. The Committee is developing a binding General Comment on Article 27 of the Convention. Article 27 is to do with various aspects around the right of persons with disabilities (including persons affected by leprosy) to get into paid work and remain in work. This is a significant issue for people affected by leprosy, who face a range of barriers to employment. Some of the barriers are unique to leprosy, so ILEP asked the Committee to include specific reference to leprosy in its General Comment.

Discriminatory laws

ILEP drew the Committee’s attention to the fact that, amongst the 130 published laws that discriminate against persons affected by leprosy, 25 relate to employment. These include laws in India (22), Thailand, Pakistan and the Bahamas. Typically, the laws bar persons affected by leprosy from obtaining work permits, from gaining certain sorts of employment-related licenses, and from holding certain types of jobs. ILEP is adamant that these laws need to be modified or repealed without delay. More positively, Vietnam, Tanzania, Colombia and Bangladesh present examples of laws that encourage and support the rights of persons affected by leprosy.

Harassment

ILEP described to the Committee how people affected by leprosy are liable to harassment in employment settings when and if their previous experience of leprosy is revealed. This harassment is amplified in cases of intersectionality – that is, where a person’s vulnerability due to the label of ‘leprosy’ is compounded by other vulnerabilities such as gender, race, age, mental health status or degree of physical impairment.

Self-help groups and livelihoods

ILEP member associations are engaged in many countries in forming and supporting self-help groups. Many groups embark on small savings schemes, and these savings along with external seed funding may be deployed into loans that enable group members – either as individuals or as a cooperative cluster – to invest in livelihood development. Livelihood decisions are usually vetted by the group, which increases the probability of success. ILEP outlined to the Committee the empowering effects of self-help and microfinance programmes. These include:

• Reduction in stigma and social exclusion
• Opportunities for self-employment
• Inclusion within financial systems
• Food security, especially where microfinance enabled people to engage in agriculture.
• Education, where participants can earn the income needed to pay for children’s education.
• Improved overall health standard, associated with having the money to pay for medicines, improved quality nutrition and more frequent meals.

However, persons with disabilities are over-represented among those that earn their living through self-employment, especially in the informal sector. ILEP told the Committee that this factor is even more pronounced for leprosy, since negative attitudes to the disease hold young people affected by leprosy back from both educational attainment and employment. As long as the livelihoods of persons affected by leprosy remain predominantly in the informal sector, their rights are not acknowledged and they are therefore vulnerable to abuse. Efforts are needed to move people affected by leprosy to the formal economy.

Vocational training

Vocational training, both institutional and community-based, can become a lifeline especially for young people who have found that discrimination has resulted in a low level of education but who want to enter employment in the formal economy. ILEP supported the Committee’s call on governments to enable persons with disabilities to access mainstream vocational and skills development programmes, but pointed out that as a result of low educational attainment and anti-leprosy prejudice, this mainstreaming is often not possible for young people affected by leprosy. Some ILEP member associations have invested heavily in bespoke vocational training programmes for the benefit of young men and women with personal experience of leprosy or from leprosy-affected households, or with other disabilities.

ILEP shared some of the key learnings from evaluations of its members’ vocational training programmes, which have demonstrated the need for:

• Advocacy with schools to ensure children from leprosy-affected backgrounds are not disadvantaged in schooling.
• Advocacy with mainstream vocational training providers to counter discriminatory attitudes towards student applicants.
• Placement activities, which are needed because the attitudinal barriers are so great that even fully certificated vocational training, on its own, may not be enough.
• Continuous scanning of the market to align job training, life-skills development and placement with the emerging external opportunities. This needs to be accompanied with ongoing relationships with key commercial/industrial sectors.
• Post-placement mentoring and alumni associations.
• Ongoing action towards the goal of remuneration levels for female graduates being commensurate with males, whether as employees or as self-employed entrepreneurs.

Employer advocacy

Many employers, reflecting attitudes in the community, discriminate against potential employees from leprosy-affected backgrounds. ILEP highlighted the need for determined advocacy towards policy-makers and employers to remove the attitudinal barriers that prevent so many people affected by leprosy from obtaining jobs, and assert their right to move into work and to stay in work. If efforts towards employment are not accompanied by intensive efforts at education and awareness of the workforce, the patterns of exclusion and harassment are likely to be repeated. ILEP supported the Committee’s recommendation of special programmes targeting persons with intellectual and psychosocial disabilities and other especially marginalised groups, and asked the Committee to explicitly state that these marginalised groups include people affected by leprosy.

Reasonable accommodation

ILEP welcomed the Committee’s intention to make an explanatory comment about reasonable accommodation – the responsibility of the employer to make adjustments that enable a person affected by leprosy to work successfully. One of the effects of nerve damage caused by leprosy is loss of feeling in hands and feet, which leads to damage unless the person learns vigilance. ILEP member associations offer physio and occupational therapy, training in self-care and advocacy for or provision of certain aids and appliances that enable the individual to function independently and maintain employment. ILEP commented that, in many cases, reasonable accommodation involves relatively low-cost provision of protective footwear and gloves or other simple devices that enable anaesthetic hands to be used for employment without damage.

Inter-relationship of human rights of persons affected by leprosy

ILEP commented that, for people affected by leprosy, the right to work is intrinsically connected to other rights in the CRPD Convention, such as the general right to non-discrimination, right to freedom from all forms of violence, right to inclusion in the community, right to education, right to health and healthcare, right to rehabilitation, and right to social protection. ILEP emphasised the pervasive effect of leprosy-related stigmatisation and discrimination on the enjoyment not only of the right to work, but of all of these rights and freedoms.