How can the leprosy sector make the most of positive legislation, rather than focussing on discriminatory legislation?

In the leprosy world, it is well known that there are more than 100 laws that discriminate explicitly against persons affected by leprosy. This is a gross injustice, each law contravenes the UN’s Convention on the Rights of Persons with Disability (CRPD), and efforts to repeal those laws should be applauded. 

However, emphasising only the discriminatory laws is not enough. What is too often overlooked is the power of positive legislation to transform the lives of persons affected by leprosy. 

In this article, we are looking at the experiences of Nigeria and India, where government legislation and policy changes have opened the door for persons affected by leprosy to access a wealth of rights and entitlements that are owed to them under the CRPD. 

In this article, we are looking at the experiences of Nigeria and India, where government legislation and policy changes have opened the door for persons affected by leprosy to access a wealth of rights and entitlements that are owed to them under the CRPD. 

In this article, we are looking at the experiences of Nigeria and India, where government legislation and policy changes have opened the door for persons affected by leprosy to access a wealth of rights and entitlements that are owed to them under the CRPD. 

The precedent has been established that leprosy rights are disability rights

Much of the positive legislation that can be utilised to ensure the rights of persons affected by leprosy is in fact disability-based legislation. Some of the countries that have ratified the CRPD have developed legislation to ensure the convention’s implementation. 

According to the work of former UN Special Rapporteur on leprosy, Alice Cruz, 

"Persons affected by leprosy and many of their family members are entitled to the rights provided under the Convention on the Rights of Persons with Disabilities on the basis of not only physical and psychosocial impairments, but also of the impairing effects of leprosy-related stigmatization."

The consequence of this is that a person affected by leprosy can access their rights under disability legislation within their country regardless of whether or not they have experienced any impairments as a consequence of leprosy. Beyond the words above from Alice Cruz, this precedent has been established by persons affected by leprosy in India and Nigeria. 

The importance of national definitions of disability

One of the most important victories for persons affected by leprosy in India has been the inclusion of leprosy as one of the 19 government-defined disabilities, something that is true for the latest disability legislation in India, but also in the previous iteration. The inclusion of leprosy within this group ensures that persons affected by leprosy currently have their rights protected under India’s 2016 Rights of Persons with Disability Act. 

As Nikita Sarah from TLM India explains, 

“This is a very powerful act and it covers a lot for persons affected by leprosy. It makes discrimination completely against the law; you can be penalised for discrimination against persons with disability. 

“It’s the first time a law like this has existed in India and it has moved us from a welfare-based approach to disability to a rights-based approach. This means there is provision within the act for employment, social security, the right to health, and more. 

“The law also made a larger number of people eligible for rights and entitlements as it recognises more disabilities compared to the previous 1995 act.” 

However, these victories would be kept from persons affected by leprosy if current and past Indian legislation did not consider them as persons with disability. In our efforts to ensure the rights of persons affected by leprosy under CRPD-based legislation, definitions are of great importance. 

However, these victories would be kept from persons affected by leprosy if current and past Indian legislation did not consider them as persons with disability. In our efforts to ensure the rights of persons affected by leprosy under CRPD-based legislation, definitions are of great importance. 

There has been a similar experience in Nigeria, which has a National Disability Act (Discrimination Against Persons with Disabilities Prohibition Act 2018) from 2019. This act includes within it the need for disability commissions at the national and state levels. 

These commissions are central to ensuring the implementation of the National Disability Act and TLM Nigeria have played a role in lobbying for the presence of persons affected by leprosy on the commissions. Such a step would play a significant role in ensuring the rights of persons affected by leprosy will be protected by the National Disability Act in practice, as well as in theory. 

Although the Nigerian legislation does not define or list categories of disabilities, leprosy is one of the seven main clusters within Nigeria’s civil coalition of organisations of persons with disabilities. Steps like this make leprosy a de facto part of the disability conversation in Nigeria.

Leprosy-specific legislation can be challenging to pursue

In both Nigeria and India, our teams have explored the possibility of leprosy-specific legislation. This legislation would be similar to disability legislation, but would focus specifically on the rights and needs of persons affected by leprosy. 

In both Nigeria and India, our teams have explored the possibility of leprosy-specific legislation. This legislation would be similar to disability legislation, but would focus specifically on the rights and needs of persons affected by leprosy. 

In both countries, this avenue of exploration has proved challenging. As Pius from TLM Nigeria puts it, 

“We had meetings with legislators about this, but they pointed us in the direction of the National Disability Act, which was under development at the time. When we looked at this act and compared it to the UN’s Principles and Guidelines on the Rights of Affected by Leprosy, we saw that a lot of those details could be – or already were – included within the National Disability Act. 

“It took more than 20 years for that Act to be passed and that happened with the backing of a UN Convention and more than 30 million Nigerians with disability. The chances of having leprosy-specific legislation seemed slim in that context. 

“Instead of pursuing leprosy-specific legislation, we have embraced the National Disability Act, ensuring the voices of persons affected by leprosy are heard in discussions about its implementation. We also plan to play an active role in the upcoming review of the act, which will take place five years after its ratification.”

Although our team in India have faced a similar response to the development of leprosy-specific legislation, that does not mean that there are no further avenues to using policy change to protect the rights of persons affected by leprosy.

Although our team in India have faced a similar response to the development of leprosy-specific legislation, that does not mean that there are no further avenues to using policy change to protect the rights of persons affected by leprosy.

Positive policy change beyond disability acts can have an impact

In Nigeria, our teams were hearing from persons affected by leprosy about the challenges they were having at election time. 

To register to vote in Nigeria you have to provide a fingerprint scan (something that is not possible for many persons affected by leprosy). To vote on the day, you have to travel to a polling station, which can be difficult to access from Nigeria’s leprosy communities. Even if you manage to register to vote and make your way to the polling station, there is a good chance that you will face discrimination from the staff at the polling station. 

The effect of these challenges was that persons affected by leprosy in Nigeria faced de facto disenfranchisement. Sadly, many individuals within the wider disability community in Nigeria faced these challenges, as well. 

Through a period of concentrated lobbying that was founded on the National Disability Act, TLM Nigeria and disability groups in Nigeria forced a policy change from the Independent National Election Commission (INEC). This change of policy meant that voters could register to vote through an iris scan in instances when a fingerprint scan was not possible. 

Through a period of concentrated lobbying that was founded on the National Disability Act, TLM Nigeria and disability groups in Nigeria forced a policy change from the Independent National Election Commission (INEC). This change of policy meant that voters could register to vote through an iris scan in instances when a fingerprint scan was not possible. 

Although this change in policy was a significant victory, it was not enough on its own. An essential part of the process of ensuring the rights of persons affected by leprosy through legislation is raising awareness.

Implementing policy without awareness is not possible

Once they had received support from the national INEC office, our team in Nigeria worked with INEC teams across the country to raise awareness. INEC officials in each state held damaging misconceptions about leprosy and were sadly ready to deny persons affected by leprosy the right to vote because of these misconceptions. 

Through a series of leprosy awareness sessions, our team dispelled the misconceptions and, at the 2023 elections, many persons affected by leprosy and other persons with disability were able to vote for the first time in their lives. 

Similar awareness-raising is essential in India, as well, and not just with duty-bearers, as Nikita explains, 

“People are not aware of their rights. That is not just persons affected by leprosy, but people in general. We visited a community of persons affected by leprosy that had a community hall in the middle of the neighbourhood. Throughout our visit, we were asking them about their struggles in accessing their rights and any discrimination they might be facing, but they were adamant that this was not a problem for them. Then we asked them about the community hall. 

“People are not aware of their rights. That is not just persons affected by leprosy, but people in general. We visited a community of persons affected by leprosy that had a community hall in the middle of the neighbourhood. Throughout our visit, we were asking them about their struggles in accessing their rights and any discrimination they might be facing, but they were adamant that this was not a problem for them. Then we asked them about the community hall. 

“They told us that they had to build their own community hall, as they were not allowed to visit the one which is outside of the leprosy community. They did not see this as discrimination or a denial of their rights. For them, it was a karmic question; they were not to cast their shadow on other people. 

“Within the Indian context, the modern human rights concept must coexist within a wider, more complex structure of beliefs and traditions that are much more deep-rooted within communities. It is only through programmes of sensitisation that we can make people aware that they have rights and that they can access them under the laws of India.”

For our Indian teams, this has also meant ensuring persons affected by leprosy know how to access these rights, whom to speak to, which paperwork to fill in, and which ID card they need (again, a finger print is often required to access this ID card). 

Tips from India and Nigeria for other countries who want to follow their path

Nikita’s tip for developing disability legislation:

“Learn from our experience. If you do not have legislation that protects the rights of persons with disability, then use our legislation as a template for your own country. Work with other disability groups and allies in your government and legislature to get this legislation passed. Almost all nations have ratified the CRPD, but far too few have put that into practice. We have a role to play in changing that.”

“Learn from our experience. If you do not have legislation that protects the rights of persons with disability, then use our legislation as a template for your own country. Work with other disability groups and allies in your government and legislature to get this legislation passed. Almost all nations have ratified the CRPD, but far too few have put that into practice. We have a role to play in changing that.”

Pius’ tip for implementing disability legislation, 

“Your work is not done when you have disability legislation in place. We have had this legislation in Nigeria for five years, but we are still walking an uphill struggle to get Nigeria’s state governments to domesticate the act within their own state. This type of legislation can be exceptionally powerful, but only if it is implemented at the grassroots. Local governments need to understand their responsibilities and persons affected by leprosy need to understand what rights they are entitled to. It is hard work, but it means that persons affected by leprosy in Nigeria have their rights protected by law for the first time in our nation’s history. That fact opens doors to us that will prove transformative in the lives of persons affected by leprosy.”

“Your work is not done when you have disability legislation in place. We have had this legislation in Nigeria for five years, but we are still walking an uphill struggle to get Nigeria’s state governments to domesticate the act within their own state. This type of legislation can be exceptionally powerful, but only if it is implemented at the grassroots. Local governments need to understand their responsibilities and persons affected by leprosy need to understand what rights they are entitled to. It is hard work, but it means that persons affected by leprosy in Nigeria have their rights protected by law for the first time in our nation’s history. That fact opens doors to us that will prove transformative in the lives of persons affected by leprosy.”