Beatriz Miranda Galarza

Last updated
Beatriz Miranda-Galarza
Born
Hilda Beatriz Miranda-Galarza

1971
Ecuador
Nationality Ecuadorian
EducationEcuador, Belgium and the UK
Known forSpecial Rapporteur on the elimination of discrimination against persons affected by leprosy (Hansen’s disease)
Predecessor Alice Cruz

(Hilda) Beatriz Miranda-Galarza (born 1971) is an Ecuadorian researcher and the Special Rapporteur on the elimination of discrimination against persons affected by leprosy (Hansen's disease) from 2023.

Contents

Life

Miranda-Galarza was born in Ecuador and brought up in a family of eight children. Several of her siblings have intellectual disabilities due to Fragile X syndrome. [1] She graduated in sociology at the Central University of Ecuador and she completed a master's degree in Latin American Studies also in Ecuador. She already had an interest in the health of minorities when she left her family in Ecuador to study anthropology in Belgium. She can speak several languages including Spanish, Italian, Portuguese and in English she completed her doctorate degree in the British city of Leeds. [2] Her thesis was in disability studies and it was titled Family and disability in Ecuador: a critical social and cultural analysis of the concept of intellectual disability. The research looked at families from different racial groups where some members were labelled as "disabled". [3]

She did research in Indonesia in leading research into the stigmatisation associated with leprosy. [2] [4]

In 2017 the Human Rights Council established a new UN Special Rapporteur to look at the elimination of discrimination against persons affected by leprosy. [5] Alice Cruz was appointed and served until 2023 when she was succeeded by Miranda-Galarza whose amended job title was "Special Rapporteur on the elimination of discrimination against persons affected by leprosy (Hansen’s disease) and their family members". [6]

Miranda-Galarza has lived in Mexico since 2018 where she works in critical disability studies at the Institute of Critical Studies in Mexico City. [7] [8] She believes that human rights principles can prevent people from seeing those affected by leprosy as just targets for care. She is working at a time when the World Health Organisation is targeting the elimination of leprosy. [9]

Publications include

The power of personal knowledge: reflecting on conscientization in lives of disabled people and people affected by leprosy in Cirebon, Indonesia, 2013 (with others) [4]

Traveling through Remembrance as Praxis with Disability Baggage, 2014 [10]

Rethinking Disability: World Perspectives in Culture and Society, 2016 (co-author) [11]

In a chapter of the 2016 handbook, Disability in the Global South: The Critical Handbook, she and Siobhan Senier argue that even after de-colonisation, imperial ideas and constructs remain which effects people with disabilities. [12]

Her 2018 publication whose title translates as Our history is not a lie covers research into the lives and discrimination of people with leprosy. [13]

Related Research Articles

International human rights instruments are the treaties and other international texts that serve as legal sources for international human rights law and the protection of human rights in general. There are many varying types, but most can be classified into two broad categories: declarations, adopted by bodies such as the United Nations General Assembly, which are by nature declaratory, so not legally-binding although they may be politically authoritative and very well-respected soft law;, and often express guiding principles; and conventions that are multi-party treaties that are designed to become legally binding, usually include prescriptive and very specific language, and usually are concluded by a long procedure that frequently requires ratification by each states' legislature. Lesser known are some "recommendations" which are similar to conventions in being multilaterally agreed, yet cannot be ratified, and serve to set common standards. There may also be administrative guidelines that are agreed multilaterally by states, as well as the statutes of tribunals or other institutions. A specific prescription or principle from any of these various international instruments can, over time, attain the status of customary international law whether it is specifically accepted by a state or not, just because it is well-recognized and followed over a sufficiently long time.

<span class="mw-page-title-main">Leprosy</span> Chronic infection caused by mycobacteria leprae or lepromatosis

Leprosy, also known as Hansen's disease (HD), is a long-term infection by the bacteria Mycobacterium leprae or Mycobacterium lepromatosis. Infection can lead to damage of the nerves, respiratory tract, skin, and eyes. This nerve damage may result in a lack of ability to feel pain, which can lead to the loss of parts of a person's extremities from repeated injuries or infection through unnoticed wounds. An infected person may also experience muscle weakness and poor eyesight. Leprosy symptoms may begin within one year, but, for some people, symptoms may take 20 years or more to occur.

Lepra (Leprosy Relief Association) is a UK-based international charity established in 1924, working to diagnose, treat, and rehabilitate people with leprosy. Lepra currently works in India, Bangladesh, and Zimbabwe.

Economic, social and cultural rights (ESCR) are socio-economic human rights, such as the right to education, right to housing, right to an adequate standard of living, right to health, victims' rights and the right to science and culture. Economic, social and cultural rights are recognised and protected in international and regional human rights instruments. Member states have a legal obligation to respect, protect and fulfil economic, social and cultural rights and are expected to take "progressive action" towards their fulfilment.

Leprosy was said to be first recognized in the ancient civilizations of China, Egypt, and India, according to the World Health Organization (WHO). Leprosy, also known as Hansen's disease, was officially eliminated at the national level in China by 1982, meaning prevalence is lower than 1 in 100,000. There are 3,510 active cases today. Though leprosy has been brought under control in general, the situation in some areas is worsening, according to China's Ministry of Health. In the past, leprosy sufferers were ostracized by their communities as the disease was incurable, disfiguring, and wrongly thought to be highly infectious.

<span class="mw-page-title-main">Yōhei Sasakawa</span>

Yōhei Sasakawa is chairman of The Nippon Foundation, the World Health Organization Goodwill Ambassador for Leprosy Elimination, and Japan's Ambassador for the Human Rights of People Affected by Leprosy. His global fight against leprosy and its accompanying stigma and social discrimination is an issue to which he has remained highly committed for more than 40 years. As chairman of The Nippon Foundation, Japan's largest charitable foundation, he guides public-interest activities in modern Japan. Sasakawa received his degree from Meiji University’s School of Political Science and Economics. Sasakawa's father was businessman, politician, and philanthropist Ryōichi Sasakawa.

<span class="mw-page-title-main">Convention on the Rights of Persons with Disabilities</span> Treaty of the United Nations

The Convention on the Rights of Persons with Disabilities is an international human rights treaty of the United Nations intended to protect the rights and dignity of persons with disabilities. Parties to the convention are required to promote, protect, and ensure the full enjoyment of human rights by persons with disabilities and ensure that persons with disabilities enjoy full equality under the law. The Convention serves as a major catalyst in the global disability rights movement enabling a shift from viewing persons with disabilities as objects of charity, medical treatment and social protection towards viewing them as full and equal members of society, with human rights. The convention was the first U.N. human rights treaty of the twenty-first century.

Leprosy stigma is a type of social stigma, a strong negative feeling towards a person with leprosy relating to their moral status in society. It is also referred to as leprosy-related stigma, leprostigma, and stigma of leprosy. Since ancient times, leprosy instilled the practice of fear and avoidance in many societies because of the associated physical disfigurement and lack of understanding behind its cause. Because of the historical trauma the word "leprosy" invokes, the disease is now referred to as Hansen's disease, named after Gerhard Armauer Hansen who discovered Mycobacterium leprae, the bacterial agent that causes Hansen's disease. Those who have suffered from Hansen's disease describe the impact of social stigma as far worse than the physical manifestations despite it being only mildly contagious and pharmacologically curable. This sentiment is echoed by Weis and Ramakrishna, who noted that "the impact of the meaning of the disease may be a greater source of suffering than symptoms of the disease".

<span class="mw-page-title-main">The Leprosy Mission</span>

The Leprosy Mission is a Christian international NGO. They are the largest and oldest organisation working in the fight against leprosy and are working towards the goal of zero leprosy transmission by 2035.

Leprosy currently affects approximately a quarter of a million people throughout the world, with the majority of these cases being reported from India.

<span class="mw-page-title-main">Epidemiology of leprosy</span>

Worldwide, two to three million people are estimated to be permanently disabled because of leprosy. India has the greatest number of cases, with Brazil second and Indonesia third.

Ableism is discrimination and social prejudice against people with physical or mental disabilities. Ableism characterizes people as they are defined by their disabilities and it also classifies disabled people as people who are inferior to non-disabled people. On this basis, people are assigned or denied certain perceived abilities, skills, or character orientations.

<span class="mw-page-title-main">Diane Kingston</span> English human rights defender

Diane Kingston, is a human rights defender and international development specialist. She is the Global Technical Lead for Disability Rights and Equalities Sightsavers and a volunteer for Shout- the mental health crisis text service

<span class="mw-page-title-main">Disability in France</span>

Approximately 12 million French citizens are affected by disability. The history of disability activism in France dates back to the French Revolution when the national obligation to help disabled citizens was recognized, but it was "unclear whether or not such assistance should be public or private." Disabled civilians began to form the first associations to demand equal rights and integration in the workforce after the First World War. Between 1940 and 1945, 45,000 people with intellectual disabilities died from neglect in French psychiatric asylums. After the Second World War, parents of disabled children and charities created specialized institutions for disabled children for whom school was not accessible. In 2018, the French Government began to roll out a disability policy which aimed to increase the allowance for disabled adults to €900 per month, improve the digital accessibility of public services, and develop easy-to-read and understand language among other goals.

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<span class="mw-page-title-main">Disability and climate change</span>

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<span class="mw-page-title-main">Leprosy Mission Australia</span> Christian medical and aid organisation

The Leprosy Mission Australia (TLMA) is a Christian medical charity dedicated to eradicating leprosy, and supporting those affected by the disease. An independent Australian charity, it is an active member of Leprosy Mission International (LMI) a global federation working in 28 countries. With a history dating back to 1913, TLMA focuses on providing medical treatment, rehabilitation, education, and advocacy for people affected by leprosy, especially those in marginalised communities.

Heba Hagrass is an Egyptian sociologist. She was a member of the Egyptian House of Representatives from 2015 to 2020 and she became the United Nations Special Rapporteur on the rights of persons with disabilities in 2023.

Alice Cruz is a Portuguese anthropologist who became a lawyer and the UN Special Rapporteur on the human rights of people with leprosy.

References

  1. ↑ "Leprosy – a beacon for democracy". Leprosy Mission International. Retrieved 2024-06-24.
  2. 1 2 "Dr. Beatriz Miranda-Galarza: Special Rapporteur on discrimination against persons with leprosy (Hansen's disease)". OHCHR. Retrieved 24 June 2024.
  3. ↑ "Miranda-Galarza - Abstracts - 4th Biennial Disability Studies Conference, Lancaster University, UK 2nd - 4th September 2008". www.lancaster.ac.uk. Retrieved 2024-06-24.
  4. 1 2 Miranda-Galarza, Beatriz; Lusli, Mimi; Dedding, Christine W. M.; Budge, Fiona M.; Zweekhorst, Marjolein B. M. (2013-10-29). "The power of personal knowledge: reflecting on conscientization in lives of disabled people and people affected by leprosy in Cirebon, Indonesia". Knowledge Management for Development Journal. 9 (2): 85–104. ISSN   1871-6342.
  5. ↑ "OHCHR - SR Leprosy". www.ohchr.org.
  6. ↑ "Current and former mandate holders (existing mandates)". OHCHR. 1 May 2024. Retrieved 23 June 2024.
  7. ↑ "Beatriz Miranda Galarza - Global Partnership for Zero Leprosy". zeroleprosy.org. 2022-11-01. Retrieved 2024-06-24.
  8. ↑ "Critical studies of theatre. Third international conference". 17 (in European Spanish). Retrieved 2024-06-24.
  9. ↑ "Discrimination, a Killer of Dreams for People Affected by Leprosy". www.globalissues.org. 2024-01-31. Retrieved 2024-06-24.
  10. ↑ "Traveling through Remembrance as Praxis with Disability Baggage – Beatriz Miranda". Culture Machine. 2014-12-19. Retrieved 2024-06-24.
  11. ↑ Devlieger, Patrick; Miranda-Galarza, Beatriz; Brown, Steven E.; Strickfaden, Megan (2016-06-15). Rethinking Disability: World Perspectives in Culture and Society. Maklu. ISBN   978-90-441-3417-9.
  12. ↑ Grech, Shaun; Soldatic, Karen (2016-11-08). Disability in the Global South: The Critical Handbook. Springer. ISBN   978-3-319-42488-0.
  13. ↑ "Nuestra historia no es mentira | 17, Editorial". 17editorial.org. Retrieved 2024-06-24.
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