Numbers are an interesting thing. More often than not, we do not even realise their significance or their impact on our lives. When policy makers of the country sit down to allocate resources for issues, they go strictly by the book. If there is no authentic data on the percentage of population living with disability, resource allocation will not be proportional. For nearly 50 years after Independence, there was no authentic data on the percentage of population with disability. And therefore, disability was nowhere in the Nation’s radar screen.
The term ‘Invisible Minority’ has become synonymous (and even fashionable!) with disability. This was coined in the early 90s, when the Disabled Rights Group (DRG), non-political advocacy collaboration, was lobbying for the Disability Act of 1995 and suddenly realised that there was no authentic data on disability in the country and those that were, said that less than 1% of the population had a disability. People with disabilities simply did not exist!
The history of Census in India dates back to 1872. However, no Census of Independent India thought of enumerating people with disabilities (except in 1981 as it was the International Year of Disabled Persons). It was only in 2001, after months of struggle led by National Centre for Promotion of Employment for Disabled People (NCPEDP) and DRG, a question on disability was included at the last moment. The question, itself was rushed, and had only five categories – Seeing, Hearing, Speech, Movement and Mental Disabilities. A huge chunk of the disabled population with disabilities like cerebral palsy, autism, etc. had no choices where they could be enumerated. Then again, mental retardation and mental illness were not differentiated.
However, the biggest problem was the lack of sensitisation of the enumerators because of which the question itself wasn’t asked or; due to lack of awareness among people with disabilities and their families, they did not come out to get themselves enumerated. The result was 2.1%.
An often quoted study by the United Nations says that 10% of the population of any developing country has a disability. The Census figures of Australia says 20% of its population has disability, U.S.A. 19.3%, UK 18%, Sri Lanka 7%, Vietnam 6.4%, China 6.3%, Bangladesh 5.6% and Pakistan 2.5%. Even if we consider the statistics of just the developing nations, it can be assumed that 2.1% is a huge underestimation. Conservative estimates puts the population of people with disabilities at 6 -7%, i.e., 60 to 70 million people.
The next Census is due in February 2011. This time around, planning at NCPEDP happened months in advance. Fortunately, the Registrar General and Census Commissioner of India, Dr. C. Chandramouli, is highly sensitive to disability issues. There have been two major developments till now.
First, the question on disability has been revised. The question in 2001 had only 5 categories. This time around this has increased to 8. For the first time, an attempt is being made to enumerate Mental Retardation and Mental Illness separately. There is also a category called ‘Multiple Disability’ where up to 3 disabilities can be enumerated. However, the most important achievement has been the category called ‘Any Other’, where anyone who considers herself/himself to be disabled or whose disability does not fit into the other categories can be enumerated.
Second, the question has been moved upto number 9 in the questionnaire. In 2001, it was at number 15.
The challenge now is to sensitise the enumerators so that they ask the question. For this, a one hour slot has been given to disability in the training of Census officials which will then trickle down to the Enumerators.
The bigger challenge, however, is to spread awareness among people with disabilities and their families so that they answer the question. There is, after all, still a lot of stigma attached to disability, especially in the rural areas.
(The author "Ms Dorodi Sharma" is a Programme Manager with the National Centre for Promotion of Employment for Disabled People, New Delhi and has been working on the disability aspect of Census 2011 led by the organisation. She can be contacted at dorodi_sharma@ncpedp.org.)
17 January, 2011
The Home Of “The Incurables”
We were surprised to see story below from Sri Lanka !
The Home Of “The Incurables”
By Shifani Reffai
Nurses spend most of their week at Victoria Home and On the outside, looking in?
Located on the busy streets of Sri Jayewardenepura Mawatha in Rajagiriya, Victoria Home for Incurables is hard to not notice, as the patients inside wave at you through the windows, and remind you of those who seem to be marginalised for just being who they are.
On mentioning my intended visit to Victoria Home for Incurables to some people, I was warned “not to touch anything” and “to wear a mask in case you catch anything.” Expecting the worst, I was pleasantly surprised and ashamed of myself to find Victoria Home is a home for the irreversibly physically handicapped, not the diseased. The place had been opened up 123 years ago, by the then Governor of Ceylon, during the Coronation Jubilee of Queen Victoria. “Our official name is Victoria Home for Incurables,” says the Director of Victoria Home, D. K. Thewarapperuma about the somewhat misleading title, “And we have been trying to remove the word ‘incurables’ from it, but it is an action that has to come from parliament itself.” Victoria Home is funded by the government and donors, and is not merely a hospital or a house, but a home to many.
A World Tucked Away
Fifty three year old Malini* lived for 30 years at home with her family in Embilipitiya before being moved to Victoria Home – she suffers from rheumatoid arthritis, which is a chronic disorder that affects synovial joints, leaving Malini permanently in a wheelchair; one-percent of the world’s population is affected by rheumatoid arthritis. Despite all this, Malini is all smiles as she entertains her visitors, talking about how she enjoys handcrafting like making and painting on cards and clothes. The fruits of such endeavours, pursued by many others at Victoria Home too, are hung in an elegant row above beds in Malini’s ward. “I am happy here,” she says with a cheerful smile.
Radika* a younger patient, shares similar sentiments; she was diagnosed with polio at four years of age, a common viral infection that can cause muscle weakness and paralysis. Radika enjoys playing popular Sinhala songs on the electronic keyboard and you’ll hear her pleasant music drifting through the corridors of Victoria Home on an average weekday afternoon.
Rani* walks up to me and blankly tells me her name and trudges away abruptly, and Deviyani* begins to say something but then just walks away laughing – these are a few of the psychiatric patients who were moved to Victoria Home decades ago, though the practice of admitting psychiatric patients is no more.
Piyadasa* treats his visitors to a beautiful rendition of a jovial song in Sinhala, as he looks up from his wheelchair. “My favourite artistes are Jothipala and Kapuge,” he says with a grin, clearly a big fan of good music. He hails from Matara, and can skillfully sew and make stuffed toys and keytags, as many learn to do at Victoria Home; “I haven’t been able to walk since I was a child,” he says, “and now I sing when people visit!” Piyadasa also enjoys mathematics and has mastered the art of playing drums.
Premasiri*, 52 years of age, has spent two and a half years at Victoria Home, as his legs haven’t functioned since birth. He is an electronics mechanic, and can do anything from repairing radios to motor winding. “There is freedom here for us that you don’t get in many other places,” he says, his intelligent eyes gleaming.
There are those at Victoria Home whose lives were altered after horrific accidents too, such as Rajesh* from Malabe, a smart looking man in his thirties who has been at the home for 15 years. He seems apathetic but accepting of his life now, a common feeling among many of the inhabitants.
Lila* who has been here for the past 14 years, has a leg deformity, and is restricted to a wheelchair for life. She spends her time making table mats and often entertains her friends in the ward and visitors with her skills in astrology and palm-reading. “I like visitors like you,” she says, with a friendly grin, “It’s nice to have company.” Vimala* sits quietly most of the day, with a book in hand, in a chair by her bed. She was diagnosed with meningitis when she was 10 years old, which causes inflammation in the membranes of the brain and spinal cord, and has a paralysed arm.
Vimala comes off as very lucid and intelligent, as she says how she wishes she was at home, with a sad smile. Many of the clear minded inhabitants of this home feel the black cloud of boredom drifting into their lives on a regular basis, for what else is there to do, but to sit around, reading, making a few things, and waiting for visitors. Although some have made peace with this fate, some wish there was more to their lives.
Outcasts
Some of those who live at Victoria Home did not want to be interviewed, and shrugged their shoulders with cold indifference, their pride hurt. The reaction is quite normal for someone with a sense of dignity and was more common among the young 20-something year olds whose lives changed after accidents. Scrutiny and the negative perception of the physically handicapped by many of those who are not, is cruel and lies in a primitive mindset that most of us possess: that they are so different from us, that they must be treated differently – when they have blood and bones and feelings just like you and me.
Sri Lanka’s societal system is to blame for reinforcing this perception – how many ordinary buildings do you see out there with ramps on their entrances or bathroom stalls for those who are differently abled? Is there a means by which someone in a wheelchair can get inside a cinema for a movie or a theatre for a play or a fast food joint for a burger? Can an intelligent human being with skills and talents of their own, but in a wheelchair or with a limp or with a paralysed limb, travel in public without having to suffer at least a handful of stares, either just rude or mixed with judgmental sentiments of fascination, horror or pity? How accepting are we as Sri Lankan citizens towards those who are physically differently abled? Just look around and count how many people in wheelchairs you see in public on an average day, and you’ll find your answer.
Unsung Heroes
A large number of people living at Victoria Home suffer from cerebral palsy, which includes a variety of disorders that are all basically non-progressive, non-contagious motor conditions that cause physical disability in human development. The most common and more severe form of cerebral palsy is spastic diplegia, which causes spasticity in muscles often in the hips, legs and pelvis, making it difficult or almost impossible to have control over bodily movements.
The corridors of Victoria Home that lead to the ward with patients with spastic diplegia are less pleasant and the stench of urine and cries of patients experiencing convulsions fill the air; there are hardly any visitors here. It is a dreary sight but one wonders who stays with them, feeds them, nurses them? Who has the patience and the selfless dedication to show such kindness to strangers on a regular basis?
Maria* a senior nurse at Victoria Home, who retired from a leading hospital in Sri Lanka, joined two years ago. She requests me not to mention her name, adding evidence to the notion that this home for the physically handicapped has its share of social stigma. She knows everyone’s name and medical condition by heart, and recites them with as much ease and knowledge as a mother would know of her children. She walks through the corridors of Victoria Home from morning to eve, talking to and watching over the people here, providing them with the company and love that so many of us with homes of our own take for granted.
When asked why he continued working here for 20 years and counting, Aarumuham provides a surprising answer. “I feel an affection towards the good people who live here,” he says in Tamil, “yes, the work is difficult, but what to do.” The labourers here get only a mere Rs. 5000 a month to take care of themselves. When asked what his dreams in life are, this humble man with a heart of gold says, “Just a house and garden, that’s the dream.” Other labourers like Mallika and Maraganam, also spend their days at Victoria Home, helping those in need; two of their prime concerns are that the place needs more volunteers, and that there is a need for a better salary. Their children are grown up and working themselves, with families of their own, so these men and women are left to fend for themselves. “The cost of everything is too high these days, just travelling to and from work takes up part of my salary,” laments Maraganam. “The patients here are happy; we feed them, change their sheets, talk to them,” they add, “We are their life.”
The Problem
Victoria Home is a haven for those who, though may be accepted by friends and family, are clearly not fully accepted by the Sri Lankan system as individuals who are capable of playing a useful role; it is not a hospital or an asylum or a building in which people are disposed of, but it is a home for people who deserve one. But unfortunately, this home will fight a losing battle atleast until society takes notice. “We are suffering financially and can’t afford to allow any more admissions for now,” says Director Thewarapperuma. “Although we do get donations from neighbours and philanthropists, and the government gives us an annual grant of Rs. 1.8 million – it is not enough. We need five lakhs a month, that is Rs. 6 million a year – we get only Rs. 2.4 million a year. The future is bleak.” With 175 male and female patients, 14 wards to maintain, a staff of 50 to pay, the need for food, equipment and medication, Victoria Home only receives one-third of the money that it needs to run smoothly.
Beyond this problem, though, is a deeper one – one that is much bigger than money and material things. It is a lack of human empathy on the part of the rest of society. The people of Victoria Home, many of whom are happy, well taken care of, and with skills and talents despite their physical differences – live inside this home, often for the rest of their lives, and they are very clearly not made a part of the functional societal system outside this home. Of course there are those who are physically handicapped in Sri Lanka who have had the strength and determination or the family and friends to do something productive with their lives that makes the reality of their physical ‘disability’ fade into the background – but the number of those people is relatively very small.
Especially with modern day equipment and prosthetics available, there is a need, as a society progressing in terms of intellect and civilization – to see Suresh, a teenager in a wheelchair travelling to and from university, Sarath with a paralysed arm working as a receptionist at a bank, Piyadasa and Radika playing instruments and singing for a public audience, Malini using her creativity to get into advertising or a business – and all of them being able to do this, on an equal level and ease as those without physical handicap. It is a grave injustice committed that this is not the present reality, and one can only hope that we open a pair of introspective eyes as a society and realise the need for change.
(*Names have been changed)
The Home Of “The Incurables”
By Shifani Reffai
Nurses spend most of their week at Victoria Home and On the outside, looking in?
Located on the busy streets of Sri Jayewardenepura Mawatha in Rajagiriya, Victoria Home for Incurables is hard to not notice, as the patients inside wave at you through the windows, and remind you of those who seem to be marginalised for just being who they are.
On mentioning my intended visit to Victoria Home for Incurables to some people, I was warned “not to touch anything” and “to wear a mask in case you catch anything.” Expecting the worst, I was pleasantly surprised and ashamed of myself to find Victoria Home is a home for the irreversibly physically handicapped, not the diseased. The place had been opened up 123 years ago, by the then Governor of Ceylon, during the Coronation Jubilee of Queen Victoria. “Our official name is Victoria Home for Incurables,” says the Director of Victoria Home, D. K. Thewarapperuma about the somewhat misleading title, “And we have been trying to remove the word ‘incurables’ from it, but it is an action that has to come from parliament itself.” Victoria Home is funded by the government and donors, and is not merely a hospital or a house, but a home to many.
A World Tucked Away
Fifty three year old Malini* lived for 30 years at home with her family in Embilipitiya before being moved to Victoria Home – she suffers from rheumatoid arthritis, which is a chronic disorder that affects synovial joints, leaving Malini permanently in a wheelchair; one-percent of the world’s population is affected by rheumatoid arthritis. Despite all this, Malini is all smiles as she entertains her visitors, talking about how she enjoys handcrafting like making and painting on cards and clothes. The fruits of such endeavours, pursued by many others at Victoria Home too, are hung in an elegant row above beds in Malini’s ward. “I am happy here,” she says with a cheerful smile.
Radika* a younger patient, shares similar sentiments; she was diagnosed with polio at four years of age, a common viral infection that can cause muscle weakness and paralysis. Radika enjoys playing popular Sinhala songs on the electronic keyboard and you’ll hear her pleasant music drifting through the corridors of Victoria Home on an average weekday afternoon.
Rani* walks up to me and blankly tells me her name and trudges away abruptly, and Deviyani* begins to say something but then just walks away laughing – these are a few of the psychiatric patients who were moved to Victoria Home decades ago, though the practice of admitting psychiatric patients is no more.
Piyadasa* treats his visitors to a beautiful rendition of a jovial song in Sinhala, as he looks up from his wheelchair. “My favourite artistes are Jothipala and Kapuge,” he says with a grin, clearly a big fan of good music. He hails from Matara, and can skillfully sew and make stuffed toys and keytags, as many learn to do at Victoria Home; “I haven’t been able to walk since I was a child,” he says, “and now I sing when people visit!” Piyadasa also enjoys mathematics and has mastered the art of playing drums.
Premasiri*, 52 years of age, has spent two and a half years at Victoria Home, as his legs haven’t functioned since birth. He is an electronics mechanic, and can do anything from repairing radios to motor winding. “There is freedom here for us that you don’t get in many other places,” he says, his intelligent eyes gleaming.
There are those at Victoria Home whose lives were altered after horrific accidents too, such as Rajesh* from Malabe, a smart looking man in his thirties who has been at the home for 15 years. He seems apathetic but accepting of his life now, a common feeling among many of the inhabitants.
Lila* who has been here for the past 14 years, has a leg deformity, and is restricted to a wheelchair for life. She spends her time making table mats and often entertains her friends in the ward and visitors with her skills in astrology and palm-reading. “I like visitors like you,” she says, with a friendly grin, “It’s nice to have company.” Vimala* sits quietly most of the day, with a book in hand, in a chair by her bed. She was diagnosed with meningitis when she was 10 years old, which causes inflammation in the membranes of the brain and spinal cord, and has a paralysed arm.
Vimala comes off as very lucid and intelligent, as she says how she wishes she was at home, with a sad smile. Many of the clear minded inhabitants of this home feel the black cloud of boredom drifting into their lives on a regular basis, for what else is there to do, but to sit around, reading, making a few things, and waiting for visitors. Although some have made peace with this fate, some wish there was more to their lives.
Outcasts
Some of those who live at Victoria Home did not want to be interviewed, and shrugged their shoulders with cold indifference, their pride hurt. The reaction is quite normal for someone with a sense of dignity and was more common among the young 20-something year olds whose lives changed after accidents. Scrutiny and the negative perception of the physically handicapped by many of those who are not, is cruel and lies in a primitive mindset that most of us possess: that they are so different from us, that they must be treated differently – when they have blood and bones and feelings just like you and me.
Sri Lanka’s societal system is to blame for reinforcing this perception – how many ordinary buildings do you see out there with ramps on their entrances or bathroom stalls for those who are differently abled? Is there a means by which someone in a wheelchair can get inside a cinema for a movie or a theatre for a play or a fast food joint for a burger? Can an intelligent human being with skills and talents of their own, but in a wheelchair or with a limp or with a paralysed limb, travel in public without having to suffer at least a handful of stares, either just rude or mixed with judgmental sentiments of fascination, horror or pity? How accepting are we as Sri Lankan citizens towards those who are physically differently abled? Just look around and count how many people in wheelchairs you see in public on an average day, and you’ll find your answer.
Unsung Heroes
A large number of people living at Victoria Home suffer from cerebral palsy, which includes a variety of disorders that are all basically non-progressive, non-contagious motor conditions that cause physical disability in human development. The most common and more severe form of cerebral palsy is spastic diplegia, which causes spasticity in muscles often in the hips, legs and pelvis, making it difficult or almost impossible to have control over bodily movements.
The corridors of Victoria Home that lead to the ward with patients with spastic diplegia are less pleasant and the stench of urine and cries of patients experiencing convulsions fill the air; there are hardly any visitors here. It is a dreary sight but one wonders who stays with them, feeds them, nurses them? Who has the patience and the selfless dedication to show such kindness to strangers on a regular basis?
Maria* a senior nurse at Victoria Home, who retired from a leading hospital in Sri Lanka, joined two years ago. She requests me not to mention her name, adding evidence to the notion that this home for the physically handicapped has its share of social stigma. She knows everyone’s name and medical condition by heart, and recites them with as much ease and knowledge as a mother would know of her children. She walks through the corridors of Victoria Home from morning to eve, talking to and watching over the people here, providing them with the company and love that so many of us with homes of our own take for granted.
When asked why he continued working here for 20 years and counting, Aarumuham provides a surprising answer. “I feel an affection towards the good people who live here,” he says in Tamil, “yes, the work is difficult, but what to do.” The labourers here get only a mere Rs. 5000 a month to take care of themselves. When asked what his dreams in life are, this humble man with a heart of gold says, “Just a house and garden, that’s the dream.” Other labourers like Mallika and Maraganam, also spend their days at Victoria Home, helping those in need; two of their prime concerns are that the place needs more volunteers, and that there is a need for a better salary. Their children are grown up and working themselves, with families of their own, so these men and women are left to fend for themselves. “The cost of everything is too high these days, just travelling to and from work takes up part of my salary,” laments Maraganam. “The patients here are happy; we feed them, change their sheets, talk to them,” they add, “We are their life.”
The Problem
Victoria Home is a haven for those who, though may be accepted by friends and family, are clearly not fully accepted by the Sri Lankan system as individuals who are capable of playing a useful role; it is not a hospital or an asylum or a building in which people are disposed of, but it is a home for people who deserve one. But unfortunately, this home will fight a losing battle atleast until society takes notice. “We are suffering financially and can’t afford to allow any more admissions for now,” says Director Thewarapperuma. “Although we do get donations from neighbours and philanthropists, and the government gives us an annual grant of Rs. 1.8 million – it is not enough. We need five lakhs a month, that is Rs. 6 million a year – we get only Rs. 2.4 million a year. The future is bleak.” With 175 male and female patients, 14 wards to maintain, a staff of 50 to pay, the need for food, equipment and medication, Victoria Home only receives one-third of the money that it needs to run smoothly.
Beyond this problem, though, is a deeper one – one that is much bigger than money and material things. It is a lack of human empathy on the part of the rest of society. The people of Victoria Home, many of whom are happy, well taken care of, and with skills and talents despite their physical differences – live inside this home, often for the rest of their lives, and they are very clearly not made a part of the functional societal system outside this home. Of course there are those who are physically handicapped in Sri Lanka who have had the strength and determination or the family and friends to do something productive with their lives that makes the reality of their physical ‘disability’ fade into the background – but the number of those people is relatively very small.
Especially with modern day equipment and prosthetics available, there is a need, as a society progressing in terms of intellect and civilization – to see Suresh, a teenager in a wheelchair travelling to and from university, Sarath with a paralysed arm working as a receptionist at a bank, Piyadasa and Radika playing instruments and singing for a public audience, Malini using her creativity to get into advertising or a business – and all of them being able to do this, on an equal level and ease as those without physical handicap. It is a grave injustice committed that this is not the present reality, and one can only hope that we open a pair of introspective eyes as a society and realise the need for change.
(*Names have been changed)
12 December, 2010
Human Rights day in South Africa and psychosocial disability
By: Annie Robb
From the 9-10 December, in recognition of 62 anniversary of the Universal Declaration of Human Rights, the Human Rights Institute of South Africa invited human rights defenders from all over South Africa and held a conference in Kliptown, Soweto where our historic Freedom Charter was signed in 1955 that stated the "South Africa belonged to all that lived in it". Ubuntu was invited to speak on disability and LGBTI issues.
There is an alarming increase in homophobia on the African continent with 4 countries having the death penalty and 29 countries were legislation makes it illegal and punishments vary from floggings to life imprisonment. In South Africa, violent corrective rapes of lesbians is common place and throughout the continent the LGBTI community suffer discrimination, harassment, violent assaults, murder and live with immense stigma. The situation is dire and we, as people living with psychosocial disabilities must speak out against this. Here is the text of my presentation to the Human Rights Defenders Forum: .
we celebrate the 62nd anniversary of the Universal Declaration of Human Rights, an international treaty that laid the foundation for a dream of a world founded upon human rights, mutual respect and dignity for all that lived on this planet. It came in the aftermath of a genocide that decimated millions and caused untold misery and suffering. Peoples’ inalienable rights were to be recognized. This was believed to lay the foundation of freedom, justice and peace.
Much of the African continent continues to be afflicted by persistent economic stagnation, mounting human misery and deep political instability. People who identify as LGBTI are under threat worldwide and face increasing homophobia in the form of violence, harassment, discrimination, exclusion, stigmatization and prejudice. Much of this can be described as the practice of torture and other cruel, inhuman and degrading treatment or punishment. Arbitrary arrest or detention and deprivation of economic, social and cultural rights occurs. These prejudices are directed against persons in all countries simply because of their sexual orientation or gender identity. This undermines the integrity and dignity of persons that identify as LGBTI.
We are all familiar with the Ugandan government’s attempt to introduce the death penalty for homosexuality. Another country on the continent of Africa who wishes to condemn to death people for simply loving one another and expressing their sexuality or choosing which gender to identify with. Currently in Sudan, Mauritania, in the north of Nigeria and Somalia you risk a death sentence for the “crime” of homosexuality.
Currently in Algeria, Angola, Botswana, Cameroon, Djibouti, Eritrea, Ethiopia, Gambia, Ghana, Guinea, Kenya, Lesotho, Liberia, Libya, Malawi, Mauritius, Morocco, Mozambique, Namibia, Senegal, Seychelles, Sierra Leone, Swaziland, Tanzania, Togo, Tunisia, Uganda, Zambia and Zimbabwe homosexuality carries judicial penalties and sanctions ranging from floggings to life, imprisonment. In the remaining few African countries homosexuality is legal but same sex unions are not recognized. On the continent of Africa, only South Africa can be said to have a Constitution and some legislation that allows people that identify as gay and lesbian to attempt to actualize the full enjoyment and freedom of their rights.
But even this is not enough. We know that many lesbians in SA live under threat of corrective rape, assault or death. They are stigmatized and marginalized by their communities.
I attended 48th Session of African Commission on Human and Peoples’ Rights last month in Banjul as a representative of the African Disability Partners. On my return I reported on the persecution and discrimination of the LGBTI communities and individuals on the African continent. I also further reported to our members that the Coalition for African Lesbians had been consistently denied observer status at the ACHPR for the past 3 sessions.
This troubled us deeply as we know that the common threads that bind us all as human beings is that we have diverse multiple identities, beliefs and practices. Many persons that identify as living with a disability also identify as lesbian or gay, may identify as black or white, Somali or Twa, maybe male, intersex or female, Moslem, Jewish, Christian, Pagan or Atheist. They could be regarded as an albino, a person accused of witchcraft, a trafficked woman, man or child, an asylum seeker, a refugee, a displaced person or a person living with HIV/AIDS or even leprosy. All of these marginalized groups may live with a disability too.
So, for people living with a disability we do realize that our freedom and rights are not guaranteed for as long as groups and people are devalued for what they are. Marginalization increases the risk of vulnerability to acts of discrimination and gross human rights violations. And people remain silent because they regard these people are not worthy of consideration.
In our deliberations, we were reminded of the words of Pastor Niemoller uttered in 1948, the year of the Universal Declaration of Human Rights and in the aftermath of World War 11:
“First they came for the communists, and I did not speak out, because I was not a communist. Then, the socialists, trade unionists, Jews and other groups. Then they came for me, and there was no one left to speak out for me.”
We are especially mindful as people living with psychosocial disabilities of having entered the same gas chambers as millions of Jews, homosexuals and others that had become objects of persecution. We know that for as long as human rights violations are tolerated by the silence and inaction of others, it is a short step towards the amplification and further dehumanization of other groups and individuals that are not regarded as full citizens or despised.
Thus it was with great distress that we heard on the 16 November of the exclusion of “sexual orientation” in a Resolution of the United Nations.[1] Even shocking was that SA during the debate called for a definition of “sexual orientation” – a clear ploy to gerrymander the proceedings and give reason to exclude because the definition was unclear. This we find both embarrassing and disconcerting of our representatives considering that they represent a country where it is firmly entrenched as a concept. We were further appalled by the news that South Africa had voted to remove this clause.
Issues around sexual orientation and psychosocial disability can find commonalities and intersections. Both groups have had aspects of their being subject to a medical interpretation Psychiatry routinely pathologizes our sexuality with the level of our sex drive being a symptom of our illness, with value judgments of whether we are doing it too much or too little, with too many of maybe even inappropriate partners. Not adhering to heterosexist norms of gender identity, and wishing to choose one’s gender is still referred to as Gender Identity disorder and persons seeking gender realignment surgery know the power of psychiatrists in determining this choice. Your body and mind is medicalized and pathologized in this process. Homosexuality until 1973 was classified as mental illness, a disease, in the DSM 4, the bible of psychiatry. Many homosexuals were locked in psychiatric institutions to cure them of this “affliction”. Torture and cruel and inhumane treatments such as painful shock therapy are used in the name of aversion therapy in attempt to eliminate all feelings and attraction to the same sex. This is cruel and inhumane treatment .
What I would like to underline is that we believe that vulnerable marginalized groups must seek their commonalities and moments of intersections. We must strive for a marginalized consensus in civil society and examine ways in which we can identify and act in solidarity with one another.
We should also keep in mind that Disability rights are perceived as inoffensive and non-political. How better to promote human rights in situations where human rights of marginalized groups are an anathema. Promoting the UN CRPD could be a powerful mechanism that will spread the principles of universal rights.
We, as in this UN Convention, are committed to the universality, indivisibility, interdependence and interrelatedness of all human rights and fundamental freedoms. It is with this background we decided we would not remain silent about LGBTI matters. We would take action and not be silent. We forwarded the following submission to the SAHRC.
The submission to the SAHRC read as follows:
“It is with great concern we note that South Africa on the 16th November 2010 at the 3rd Committee of the United Nations General Assembly voted to remove sexual orientation from the resolution on extrajudicial, summary and arbitrary executions.
Mentioning sexual orientation as a basis on which people are targeted for killing highlights the extreme vulnerability of persons identifying as lesbian, gay, bisexual, transgendered or intersexed (LGBTI). This is an issue extremely relevant to much of the African continent where persons identifying as LGBTI are often subject to discrimination, crimes such as corrective rapes, violence, torture and even death.
We would like to remind the SAHRC that the South African Constitution 1996 (9.3) guarantees against discrimination based on sexual orientation and that you are mandated and obligated to ensure that the rights of all those that live in South Africa are protected. As persons living with psychosocial disabilities who include members that identify as LGBTI, we would like to highlight that South Africa has signed and ratified the United Nations Convention on the Rights of Persons with Disabilities in 2007 that clearly reaffirms South Africa’s commitment to the universality, indivisibility, interdependence and interrelatedness of all human rights and fundamental freedoms. Furthermore, it recalls the Charter of the United Nations that recognizes the inherent dignity and worth and the equal and inalienable rights of all members of the human family as the foundation of freedom, justice and peace in the world.
Thus, we urge the SAHRC to uphold the Paris Principles and speak out strongly against this decision of the South African government, to issue a statement condemning this decision and to clearly reaffirm the principles of our Constitution that guarantee freedom from discrimination based on sexual orientation.
We urge you to recognize the inherent risk of the psychosocial trauma resulting from discriminatory practices. The message conveyed by the South African government by voting for the elimination of sexual orientation in this resolution in our opinion increases vulnerability, social isolation and exclusion of the LGBTI persons in Africa and thus exposes them to further emotional and physical violence. We interpret this as the blatant disregard and the violation of the inherent dignity of all those that identify with the LGBTI community in South Africa.”
End………….
We approached the South African Human Rights Commission with our concerns as we regard them as the custodians of our Constitution, a constitution that should never have allowed our Government representatives to have committed this act. With the ongoing killing and persecution of gay and lesbian persons on the Continent of African and many other parts of the world, it is necessary that “sexual orientation” is particularized in a United Nations Resolution that deals with this very subject.
It must have been common knowledge of our government representatives of the recent intensification of homophobia both here in South Africa. , as witnessed by the ongoing corrective rapes of lesbian women in SA, and continentally. A well publicized local campaign both by civil society and in the media was launched to oppose the Ugandan government from introducing the death penalty for those accused of homosexuality. Also, the recent Malawian sentencing of a married couple simply because of their love for one another. And especially Zimbabwe’s continued violent harassment of the gay community that has resulted in many gay Zimbabweans seeking refuge in South Africa. This has all been widely reported in the South African media.
So, we as Ubuntu expect that the SA government takes the concerns of civil society seriously. Some Civil Society organizations, under the leadership of Zackie Achmat has drafted a letter[2] to the South African Government that demands an apology and the recall of the SA representatives to apologize to South Africa for their actions. Beyond these expectations, Ubuntu believes that the SAHRC has the power to support civil society and the LGBTI community in the restoration of their dignity by issuing a statement that clearly articulates the affirmation of the right not to be discriminated against based on sexual orientation and a comment on the actions of the South African Government.
The SA representatives at the UN must have baffled the world by and given the international community reasons for alternating between hope and discouragement of the status of human rights in Africa. They acted unconstitutionally in the eyes of the SA public and all those in the world that defend and uphold human rights. South Africa is obliged to “respect, protect, promote and fulfill” the rights in the Bill of Rights which clearly outlaws discrimination based on sexual orientation. Accordingly, the vote was unconstitutional and invalid in our law under section 2 of the Constitution. The courts in this country have the power to declare that this is so and to order the government to bring its policy informing the vote into line with section 7(2) and 9(3) of the Bill of Rights.
The options exist to litigate. Government of the Republic of South Africa would be the only Respondent in the application – they can decide among themselves who should take the blame for the decision to vote so offensively and unconstitutionally at the UN. We could consider replicating the complaint to the Office of the Public Protector. A parliamentarian our circle could also motivate a question in parliament aimed at exposing the unconstitutionality of the vote in the UN.
But we should not have to litigate around this. Civil society in concert with SAHRC should call the government to account for their action. But maybe we need to question and lobby around policies that inform how our foreign representatives behave in other countries. We should not forget the shenanigans around the issuing of a visa to the Dalai Lama and the behavior of our consular staff in India. But more importantly, LGBTI and Disability organizations should be joined by all sectors that represent diverse groupings and human rights issues and form a consensus and act in concert in issues of concern. For example, persons living with Albinism on the continent are also subject to persecution and death and intense stigma and discrimination. We regard their congenital condition that places barriers to their full enjoyment of life as a disability. They could greatly benefit from the protection of the CRPD afforded persons with disabilities. We should no longer operate in Silo’s and we need to find common ground. This will strengthen civil society and may snowball into meaningful change towards instilling a culture of human rights.
And
Just like, we persons with psychosocial disabilities will not be guaranteed all our rights until all discrimination is challenged, so too must SA actively engage in the promotion and protection of human rights on the continent. The aims and objectives of implementing universal human rights on the continent is SA’s responsibility as well. Our human rights here in SA cannot thrive and prosper while many countries in Africa face continued economic stagnation, mounting human misery and deep political instability. Development is dependent on a human rights framework.
The SAHRC could be one of the significant vehicles towards this social transformation to justice and the instilling of a culture of human rights on the African Continent. This is especially relevant as human rights defenders in many parts of Africa are coming under increased persecution, silencing, imprisonment and death. Country leaders in Africa are even known to expel UN representatives[3] when they speak out as when on 15 February 2010, UNICEF representative was declared persona non grata in Gambia and given 24 hours to leave the country because she dared to stand by a UNICEF report documenting child trafficking in Gambia and many other gross violations of human rights in Gambia. We need a strong and robust network of African Human Rights Institutions to challenge these violations and we look to you, the SAHRC with your international standing and credibility to lead when you soon assume the chair.
To sum up, we believe that:
In Africa, in the coming decades, our humanity will be judged by the measures taken to promote and protect the rights of those who are most socially isolated, suffering and are persecuted,
And
that for human rights to flourish and be actualized, we must urgently address the current violations and discrimination suffered by those marginalized groups evidenced by the current rising tide of homophobia in Africa and ongoing killings of Albino persons,
[1] http://www.un.org/News/Press/docs/2010/gashc3997.doc.htm
[2] http://writingrights.org/2010/11/24/sign-open-protest-letter-government-violates-constitution-at-un/?utm_source=twitterfeed&utm_medium=facebook
[3] http://www.thegambiaecho.com/Homepage/tabid/36/articleType/ArticleView/articleId/1826/Default.aspx
Annie Robb
+27 (0) 72 044 1024
theubuntucentre@gmail.com
http://ubuntucentre.wordpress.com/
From the 9-10 December, in recognition of 62 anniversary of the Universal Declaration of Human Rights, the Human Rights Institute of South Africa invited human rights defenders from all over South Africa and held a conference in Kliptown, Soweto where our historic Freedom Charter was signed in 1955 that stated the "South Africa belonged to all that lived in it". Ubuntu was invited to speak on disability and LGBTI issues.
There is an alarming increase in homophobia on the African continent with 4 countries having the death penalty and 29 countries were legislation makes it illegal and punishments vary from floggings to life imprisonment. In South Africa, violent corrective rapes of lesbians is common place and throughout the continent the LGBTI community suffer discrimination, harassment, violent assaults, murder and live with immense stigma. The situation is dire and we, as people living with psychosocial disabilities must speak out against this. Here is the text of my presentation to the Human Rights Defenders Forum: .
we celebrate the 62nd anniversary of the Universal Declaration of Human Rights, an international treaty that laid the foundation for a dream of a world founded upon human rights, mutual respect and dignity for all that lived on this planet. It came in the aftermath of a genocide that decimated millions and caused untold misery and suffering. Peoples’ inalienable rights were to be recognized. This was believed to lay the foundation of freedom, justice and peace.
Much of the African continent continues to be afflicted by persistent economic stagnation, mounting human misery and deep political instability. People who identify as LGBTI are under threat worldwide and face increasing homophobia in the form of violence, harassment, discrimination, exclusion, stigmatization and prejudice. Much of this can be described as the practice of torture and other cruel, inhuman and degrading treatment or punishment. Arbitrary arrest or detention and deprivation of economic, social and cultural rights occurs. These prejudices are directed against persons in all countries simply because of their sexual orientation or gender identity. This undermines the integrity and dignity of persons that identify as LGBTI.
We are all familiar with the Ugandan government’s attempt to introduce the death penalty for homosexuality. Another country on the continent of Africa who wishes to condemn to death people for simply loving one another and expressing their sexuality or choosing which gender to identify with. Currently in Sudan, Mauritania, in the north of Nigeria and Somalia you risk a death sentence for the “crime” of homosexuality.
Currently in Algeria, Angola, Botswana, Cameroon, Djibouti, Eritrea, Ethiopia, Gambia, Ghana, Guinea, Kenya, Lesotho, Liberia, Libya, Malawi, Mauritius, Morocco, Mozambique, Namibia, Senegal, Seychelles, Sierra Leone, Swaziland, Tanzania, Togo, Tunisia, Uganda, Zambia and Zimbabwe homosexuality carries judicial penalties and sanctions ranging from floggings to life, imprisonment. In the remaining few African countries homosexuality is legal but same sex unions are not recognized. On the continent of Africa, only South Africa can be said to have a Constitution and some legislation that allows people that identify as gay and lesbian to attempt to actualize the full enjoyment and freedom of their rights.
But even this is not enough. We know that many lesbians in SA live under threat of corrective rape, assault or death. They are stigmatized and marginalized by their communities.
I attended 48th Session of African Commission on Human and Peoples’ Rights last month in Banjul as a representative of the African Disability Partners. On my return I reported on the persecution and discrimination of the LGBTI communities and individuals on the African continent. I also further reported to our members that the Coalition for African Lesbians had been consistently denied observer status at the ACHPR for the past 3 sessions.
This troubled us deeply as we know that the common threads that bind us all as human beings is that we have diverse multiple identities, beliefs and practices. Many persons that identify as living with a disability also identify as lesbian or gay, may identify as black or white, Somali or Twa, maybe male, intersex or female, Moslem, Jewish, Christian, Pagan or Atheist. They could be regarded as an albino, a person accused of witchcraft, a trafficked woman, man or child, an asylum seeker, a refugee, a displaced person or a person living with HIV/AIDS or even leprosy. All of these marginalized groups may live with a disability too.
So, for people living with a disability we do realize that our freedom and rights are not guaranteed for as long as groups and people are devalued for what they are. Marginalization increases the risk of vulnerability to acts of discrimination and gross human rights violations. And people remain silent because they regard these people are not worthy of consideration.
In our deliberations, we were reminded of the words of Pastor Niemoller uttered in 1948, the year of the Universal Declaration of Human Rights and in the aftermath of World War 11:
“First they came for the communists, and I did not speak out, because I was not a communist. Then, the socialists, trade unionists, Jews and other groups. Then they came for me, and there was no one left to speak out for me.”
We are especially mindful as people living with psychosocial disabilities of having entered the same gas chambers as millions of Jews, homosexuals and others that had become objects of persecution. We know that for as long as human rights violations are tolerated by the silence and inaction of others, it is a short step towards the amplification and further dehumanization of other groups and individuals that are not regarded as full citizens or despised.
Thus it was with great distress that we heard on the 16 November of the exclusion of “sexual orientation” in a Resolution of the United Nations.[1] Even shocking was that SA during the debate called for a definition of “sexual orientation” – a clear ploy to gerrymander the proceedings and give reason to exclude because the definition was unclear. This we find both embarrassing and disconcerting of our representatives considering that they represent a country where it is firmly entrenched as a concept. We were further appalled by the news that South Africa had voted to remove this clause.
Issues around sexual orientation and psychosocial disability can find commonalities and intersections. Both groups have had aspects of their being subject to a medical interpretation Psychiatry routinely pathologizes our sexuality with the level of our sex drive being a symptom of our illness, with value judgments of whether we are doing it too much or too little, with too many of maybe even inappropriate partners. Not adhering to heterosexist norms of gender identity, and wishing to choose one’s gender is still referred to as Gender Identity disorder and persons seeking gender realignment surgery know the power of psychiatrists in determining this choice. Your body and mind is medicalized and pathologized in this process. Homosexuality until 1973 was classified as mental illness, a disease, in the DSM 4, the bible of psychiatry. Many homosexuals were locked in psychiatric institutions to cure them of this “affliction”. Torture and cruel and inhumane treatments such as painful shock therapy are used in the name of aversion therapy in attempt to eliminate all feelings and attraction to the same sex. This is cruel and inhumane treatment .
What I would like to underline is that we believe that vulnerable marginalized groups must seek their commonalities and moments of intersections. We must strive for a marginalized consensus in civil society and examine ways in which we can identify and act in solidarity with one another.
We should also keep in mind that Disability rights are perceived as inoffensive and non-political. How better to promote human rights in situations where human rights of marginalized groups are an anathema. Promoting the UN CRPD could be a powerful mechanism that will spread the principles of universal rights.
We, as in this UN Convention, are committed to the universality, indivisibility, interdependence and interrelatedness of all human rights and fundamental freedoms. It is with this background we decided we would not remain silent about LGBTI matters. We would take action and not be silent. We forwarded the following submission to the SAHRC.
The submission to the SAHRC read as follows:
“It is with great concern we note that South Africa on the 16th November 2010 at the 3rd Committee of the United Nations General Assembly voted to remove sexual orientation from the resolution on extrajudicial, summary and arbitrary executions.
Mentioning sexual orientation as a basis on which people are targeted for killing highlights the extreme vulnerability of persons identifying as lesbian, gay, bisexual, transgendered or intersexed (LGBTI). This is an issue extremely relevant to much of the African continent where persons identifying as LGBTI are often subject to discrimination, crimes such as corrective rapes, violence, torture and even death.
We would like to remind the SAHRC that the South African Constitution 1996 (9.3) guarantees against discrimination based on sexual orientation and that you are mandated and obligated to ensure that the rights of all those that live in South Africa are protected. As persons living with psychosocial disabilities who include members that identify as LGBTI, we would like to highlight that South Africa has signed and ratified the United Nations Convention on the Rights of Persons with Disabilities in 2007 that clearly reaffirms South Africa’s commitment to the universality, indivisibility, interdependence and interrelatedness of all human rights and fundamental freedoms. Furthermore, it recalls the Charter of the United Nations that recognizes the inherent dignity and worth and the equal and inalienable rights of all members of the human family as the foundation of freedom, justice and peace in the world.
Thus, we urge the SAHRC to uphold the Paris Principles and speak out strongly against this decision of the South African government, to issue a statement condemning this decision and to clearly reaffirm the principles of our Constitution that guarantee freedom from discrimination based on sexual orientation.
We urge you to recognize the inherent risk of the psychosocial trauma resulting from discriminatory practices. The message conveyed by the South African government by voting for the elimination of sexual orientation in this resolution in our opinion increases vulnerability, social isolation and exclusion of the LGBTI persons in Africa and thus exposes them to further emotional and physical violence. We interpret this as the blatant disregard and the violation of the inherent dignity of all those that identify with the LGBTI community in South Africa.”
End………….
We approached the South African Human Rights Commission with our concerns as we regard them as the custodians of our Constitution, a constitution that should never have allowed our Government representatives to have committed this act. With the ongoing killing and persecution of gay and lesbian persons on the Continent of African and many other parts of the world, it is necessary that “sexual orientation” is particularized in a United Nations Resolution that deals with this very subject.
It must have been common knowledge of our government representatives of the recent intensification of homophobia both here in South Africa. , as witnessed by the ongoing corrective rapes of lesbian women in SA, and continentally. A well publicized local campaign both by civil society and in the media was launched to oppose the Ugandan government from introducing the death penalty for those accused of homosexuality. Also, the recent Malawian sentencing of a married couple simply because of their love for one another. And especially Zimbabwe’s continued violent harassment of the gay community that has resulted in many gay Zimbabweans seeking refuge in South Africa. This has all been widely reported in the South African media.
So, we as Ubuntu expect that the SA government takes the concerns of civil society seriously. Some Civil Society organizations, under the leadership of Zackie Achmat has drafted a letter[2] to the South African Government that demands an apology and the recall of the SA representatives to apologize to South Africa for their actions. Beyond these expectations, Ubuntu believes that the SAHRC has the power to support civil society and the LGBTI community in the restoration of their dignity by issuing a statement that clearly articulates the affirmation of the right not to be discriminated against based on sexual orientation and a comment on the actions of the South African Government.
The SA representatives at the UN must have baffled the world by and given the international community reasons for alternating between hope and discouragement of the status of human rights in Africa. They acted unconstitutionally in the eyes of the SA public and all those in the world that defend and uphold human rights. South Africa is obliged to “respect, protect, promote and fulfill” the rights in the Bill of Rights which clearly outlaws discrimination based on sexual orientation. Accordingly, the vote was unconstitutional and invalid in our law under section 2 of the Constitution. The courts in this country have the power to declare that this is so and to order the government to bring its policy informing the vote into line with section 7(2) and 9(3) of the Bill of Rights.
The options exist to litigate. Government of the Republic of South Africa would be the only Respondent in the application – they can decide among themselves who should take the blame for the decision to vote so offensively and unconstitutionally at the UN. We could consider replicating the complaint to the Office of the Public Protector. A parliamentarian our circle could also motivate a question in parliament aimed at exposing the unconstitutionality of the vote in the UN.
But we should not have to litigate around this. Civil society in concert with SAHRC should call the government to account for their action. But maybe we need to question and lobby around policies that inform how our foreign representatives behave in other countries. We should not forget the shenanigans around the issuing of a visa to the Dalai Lama and the behavior of our consular staff in India. But more importantly, LGBTI and Disability organizations should be joined by all sectors that represent diverse groupings and human rights issues and form a consensus and act in concert in issues of concern. For example, persons living with Albinism on the continent are also subject to persecution and death and intense stigma and discrimination. We regard their congenital condition that places barriers to their full enjoyment of life as a disability. They could greatly benefit from the protection of the CRPD afforded persons with disabilities. We should no longer operate in Silo’s and we need to find common ground. This will strengthen civil society and may snowball into meaningful change towards instilling a culture of human rights.
And
Just like, we persons with psychosocial disabilities will not be guaranteed all our rights until all discrimination is challenged, so too must SA actively engage in the promotion and protection of human rights on the continent. The aims and objectives of implementing universal human rights on the continent is SA’s responsibility as well. Our human rights here in SA cannot thrive and prosper while many countries in Africa face continued economic stagnation, mounting human misery and deep political instability. Development is dependent on a human rights framework.
The SAHRC could be one of the significant vehicles towards this social transformation to justice and the instilling of a culture of human rights on the African Continent. This is especially relevant as human rights defenders in many parts of Africa are coming under increased persecution, silencing, imprisonment and death. Country leaders in Africa are even known to expel UN representatives[3] when they speak out as when on 15 February 2010, UNICEF representative was declared persona non grata in Gambia and given 24 hours to leave the country because she dared to stand by a UNICEF report documenting child trafficking in Gambia and many other gross violations of human rights in Gambia. We need a strong and robust network of African Human Rights Institutions to challenge these violations and we look to you, the SAHRC with your international standing and credibility to lead when you soon assume the chair.
To sum up, we believe that:
In Africa, in the coming decades, our humanity will be judged by the measures taken to promote and protect the rights of those who are most socially isolated, suffering and are persecuted,
And
that for human rights to flourish and be actualized, we must urgently address the current violations and discrimination suffered by those marginalized groups evidenced by the current rising tide of homophobia in Africa and ongoing killings of Albino persons,
[1] http://www.un.org/News/Press/docs/2010/gashc3997.doc.htm
[2] http://writingrights.org/2010/11/24/sign-open-protest-letter-government-violates-constitution-at-un/?utm_source=twitterfeed&utm_medium=facebook
[3] http://www.thegambiaecho.com/Homepage/tabid/36/articleType/ArticleView/articleId/1826/Default.aspx
Annie Robb
+27 (0) 72 044 1024
theubuntucentre@gmail.com
http://ubuntucentre.wordpress.com/
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