Disability World
A bimonthly web-zine of international disability news and views • Issue no. 18 April-May 2003


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A Real Horror Story: the abuse of disabled people's human rights
Report on the results of a project to systematically record human rights abuse against disabled people: the Disability Awareness in Action Human Rights Database
By Richard Light (Research & Publications Director, Disability Awareness in Action)

Introduction
Horror is something to which we are subjected every day, whether it is the latest terrorist atrocity, the results of modern 'smart' weapon technology or the price we pay for high speed travel. Some suggest that we are becoming immune to the sight of such horrors, others bemoan our children's exposure to such images but, whatever opinion is voiced, it seems that the graphic depiction of human misery is one of the 'benefits' of contemporary media news services.

There is, however, a horror which has remained almost invisible: the ongoing and, in many cases, the systematic, abuse of disabled people. Contrary to what some would have us believe, human rights are not a sword to smite good intentions; they are a shield to deflect oppression. Human rights, for example, by the Universal Declaration of Human Rights, should be a minimum below which no society falls. Instead, they too often remain an ideal to which many can only aspire.

Those of us who live in what we like to describe as the 'developed world' are too often complacent. The majority are spared crippling poverty, have access to a host of consumer goods and services and rely, when the need arises, on a moderately supportive state welfare system. We have complex systems of justice, a police service that is - to a greater or lesser extent - accountable to the people it polices and politicians elected by a democratic process. As we shall see, such complacency is not something that disabled people (amongst others) can necessarily share.

For too long, our ideas of human rights have been heavily influenced by the ideal of the 'greatest good for the greatest number', a cliché that serves to hide obscene exploitation and abuse of minorities, both within individual nation states and globally. The equally unsatisfactory alternative has been a pluralism that claims to respect all, but is reluctant to take a stand against any issue. We must find a route through this impasse, if only because the alternative would seem to be even greater social stresses than those that already exist.

DAA Human Rights Database
The DAA Human Rights Database was launched by Disability Awareness in Action [DAA] in 1999 and, to the best of our knowledge, the Project remains the only systematic attempt to provide an international record of human rights abuse inflicted upon disabled people.

The DAA Human Rights Database now records human rights abuse against 2,046,627 disabled people.

Despite the modest resources available to DAA in general - and the Human Rights Database in particular [note 1] - our records now contain 1,427 reports of abuse affecting at least 2,046,627 disabled people. [note 2]

The unique and vital role of the Database has only been fully realised since its inception, with DAA staff taking every opportunity to disseminate information about the Database amongst disabled people's organisations, the media, human rights and governmental agencies. Reports concerning the Database and its results have been presented to the UN General Secretary, the UN Human Rights Commission, the UN Special Rapporteur on Disability and the European Disability Forum.

Finally, it should be noted that this Report is necessarily selective about the abuse that is discussed. The author would be delighted to discuss trends revealed by the Database with individual enquirers.

Methodological barriers
Recurring themes in reporting human rights abuse
As with any research enterprise, the methodology of human rights reporting has engendered extensive debate. Academics, practitioners, policy-makers and pressure groups are driven by contrasting, sometimes competing, motives when addressing human rights abuses. The succeeding section will seek to acknowledge the most important of these, whilst adding a number of disability-specific constraints.

Is the state itself to be held responsible for the violation?
The DAA Database records the country in which an alleged violation occurs; however, what the individual report will often fail to reveal is whether organs of the 'state' are implicated in the commission of the abuse.

No attempt has been [nor can be] made in the DAA Database to establish individual state's responsibility for abuses, except where such responsibility is evident from the facts revealed. Reports are recorded as they are received, but it should be noted that we endorse an approach that acknowledges responsibility for omission as well as commission. We certainly see little ethical difference between pursuing human rights abuses as a principal, aiding and abetting others to carry out the abuse or wilfully ignoring evidence of ongoing or systematic abuse within state-sponsored settings. Far from sanctioning abuse (either implicitly or by implication) we believe that it is a fundamental responsibility of the state to protect the human rights of its citizens, as enunciated by the United Nations Universal Declaration of Human Rights. Failure to afford such protection to the most vulnerable - children, the elderly and disabled people - indicates the most contemptuous abuse.

The numbers game
Any attempt to report international human rights abuse is subject to an unavoidable irony - evidence of any abuse in the most repressive states is likely to be hard to find. In purely numerical terms, therefore, the more liberal states are likely to appear as the most frequent abusers.

In states where gross violations of human rights (GVHR) are endemic, those relating to disability may not be highly prioritised. Put simply, if citizens fear that they are at risk of being murdered by 'death squads', violations that threaten disabled people alone may seem unworthy of comment. Furthermore, despotic states that rely on terror for their survival are generally adept at suppressing the dissemination of damaging evidence. This is particularly true of reports to external agencies.

Project-specific issues
Sources of evidence
Where, as with the DAA Database, media reports comprise a significant source of data, one has to rely:
  • on the abuse being recognised in the first instance
  • on the issue being judged of general, rather than merely specialist or minority appeal
  • on the media having sufficient independence to report incidents that a hostile government or state apparatus would prefer to conceal
  • on reliably and systematically accessing published reports.
At this stage of the DAA Database, the reliance on UK-based newspapers reduces many of the foregoing risks, although there is a clearly identifiable preponderance of abuses committed against disabled people in the UK.

Abuse that results in disability
One of the methodological issues that has yet to be resolved is whether to include human rights abuse that results in the victim becoming disabled for the first time. Strictly speaking, such incidents cannot be described as being directed at disabled people, although the result is the acquisition of impairments.

There are a number of contemporary examples of such cases: the maiming of large numbers of men, women and children in Rwanda and the continued practise of female circumcision amongst Muslim communities. At present, such concerns are academic, as little reliable evidence is available; however, it is clearly the case that this issue will need to be addressed in due course.

Should there be a time-limit on including historical evidence?
At present, the DAA Database includes a number of cases that occurred decades ago - including the holocaust and sterilisation programmes - but about which reliable evidence has only recently been available. This issue is a matter of some concern to the Project team, not least because of the central dichotomy that results: despite the historic nature of these cases, the details of them are often not generally known; however, reporting 'old' cases may serve to reduce the impact of the Project.

The intention, at this early stage, is that we will continue to record:
  • gross human rights violations
  • those that affect substantial numbers, and
  • those that have been state-sponsored and/or endemic but that such cases will only be used to provide background discussion in future reports.
In all other cases, reports entered into the database will refer to abuse that has occurred since 1980.

Disability-specific constraints
In addition to the widely identified constraints on accurate data collection and verification of human rights abuses, this project is subject to a number of additional barriers:
  • people subject to abuse, from those supposedly in a 'caring' relationship with them, may view the abuse as less damaging than the withdrawal of personal care that may be occasioned by their complaint
  • even where the person abused is willing to complain about abuse, when it occurs in a 'closed' institution, there may be little opportunity to do so, either as a result of the victims social exclusion, or the deliberate efforts of staff to silence them
  • the person abused may not self-identify as a 'disabled person', thereby preventing their reporting an abuse relating to disability
  • the nature of the impairment itself may make it impossible for the victim to complain
  • the nature of the impairment may lead to any complaint being dismissed as unfounded and simply prompted by the impairment i.e. 'interference with the cognitive process'
  • in view of the common reliance on family members, rather than state or regionally appointed Personal Assistants [PA's], there are likely to be strong disincentives to making public an abuse that might have disastrous effects on the family (as opposed to disastrous effects on the disabled victim alone)
Statistical Analysis
Source of report

Organisations
By far the greatest numbers of reports were obtained from disability organisations: 31% of the total reports on the Project database.

Table 1: Source of reports contained on the DAA Database
Source Number % of total
Organisation 443 31%
Document 326 23%
News 319 22%
National co-ordinator 319 22%
Global Rights Campaign 123 9%
Individual 116 8%
Press 60 4%
Research 14 1%
TV 6 0.42%

There is no statistically significant variation in the gender of victims contained in reports from organisations; 29% concern male victims, 33% female and 33% are reports concerning both male and female victims.

Organisations reporting cases of abuse to the Project represented the following countries: Albania, Argentina, Australia, Austria, Bolivia, Bulgaria, Canada, Chad, Chile, China, Colombia, Ecuador, El Salvador, France, Gabon, Gambia, Germany, Ghana, Greece, Guatemala, Guyana, Holland, Honduras, Hong Kong, India, Indonesia, Ireland, Israel, Italy, Japan, Kenya, North Korea, South Korea, Kosovo, Latvia, Lebanon, Lesotho, Liberia, Macedonia, Mexico, Morocco, Namibia, Nepal, Netherlands, New Zealand, Paraguay, Peru, Rumania, Russia, Singapore, South Africa, Spain, Sri Lanka, Swaziland, Tanzania, Thailand, Uganda, UK, USA, Uruguay, Venezuela, Zambia and Zimbabwe. The ages of victims in reports forwarded by disability organisations are broadly in line with the remainder of reports. 20% concern children up to the age of 16, 54% concern adults in the age range 17-64 and 11% concern people over the age of 65. Much the same can be said of the victim's impairment type; the results are contained in Table 2, below.

Table 2: Reports received from disability organisations: victim's impairment-type
Impairment type %
Physical 61%
Hearing 17%
Visual 23%
Learning disability 32%
Mental health 19%

Press
Three hundred and seventy nine of the reports contained on the Project database originated from reports in the press, including the disability press. Of that number, 267 (70%) were sourced from the UK press, 21 (6%) from the USA and 13 (3%) from Germany. All of the remaining states from which press reports were received recorded 7 or less of the total reports.

Again, it would be unwise to draw conclusions from the proportion of reports obtained from the UK and for the disproportionate reliance on the British media. Part of the work of our Project Administrator specifically involves a review of all broadsheets and a number of tabloid newspapers on a daily basis. There is no doubt that a systematic review of national and, where possible regional, newspapers around the world would provide a significant source of data to the Project.

There are no statistically significant variations in the gender of disabled people who are subject of press reports: 33% concerned male victims, whilst 35% related to female victims; 30% of the press reports concerned both male and female victims. Children and young people featured in 26% of the press reports, adults between the ages of 17 and 64 in 46% and those aged 65 or over in 14%; reports affecting all age groups arose in 12% of cases obtained from this source.

People with physical impairments were most likely to be featured in press reports, comprising 82% of all cases. The types of impairment featured in press reports are recorded in Table 3, below.

Table 3: Percentage of press reports concerning victims with specific types of impairment (total will be greater than 100 as many disabled people have more than one impairment)
Impairment type %
Physical 61%
Hearing 11%
Visual 12%
Learning disability 31%
Mental health 22%

Documents
Three-hundred and twenty six of the reports contained on the DAA Database were obtained from documents, including published reports, verified reports forwarded by third-parties and books.

Individual
One-hundred and sixteen reports have been obtained from evidence supplied to DAA from individuals.

Global Rights Campaign
As an integral part of an international campaign to obtain a UN Declaration on the Rights of Disabled People, DAA invited disabled people to provide testimony to be submitted to the UN Human Rights Commission. This campaign - entitled the Global Rights Campaign - resulted in a large number of cases being forwarded to DAA. Although we did not seek to link the Campaign directly to the Universal Declaration of Human Rights, 127 of the cases reported to us evidenced a breach of the Universal Declaration.

Research
It is disappointing to note that just 14 of the reports contained on the Project database originated from research programmes, amply illustrating the work that is still to be done to encourage academics to investigate human rights abuses amongst disabled people. The reports obtained from research projects concerned abuse in:
  • Australia,
  • Canada,
  • China,
  • France (2),
  • Japan,
  • The Netherlands,
  • UK (6) and the
  • United States of America.
Television
With just 6 reports documented from television programmes, there is insufficient data to warrant substantive analysis. Indeed, the paucity of reports obtained from this source cannot be seen as indicative of any failure to report disability issues on the television as, to be included in the Project, the relevant programme would have to be seen and reported upon to the Project team.

Of the six occasions when a television programme was the source of our report, four appeared on British television and two on German television.

Victim demographics
Figure 2: Victim gender
Gender %
Male 32.12%
Female 33.17%
Both 29.03%
Unknown 5.68%

There is no statistically significant dissimilarity in the treatment afforded disabled victims by gender: 32% of reports concerned men, 33% women and 29% of reports concerned abuse of both men and women.

20.5% of reports concern abuse inflicted on children below the age of 16 (292 reports); almost 52% affected adults in the age range 17 to 64 years of age (738 reports), whilst a little over 10% affected disabled people aged 65 years and over (195 reports).

Before commenting on the victim's impairment, it should be noted that a significant number of victims have multiple impairments, ensuring that the figures provided do not total 100%. Forty-three percent of reports concern victims with a physical impairment and 23% a learning disability, 13% concerned people with mental illness and 12% those with visual impairments, whilst people with hearing impairments and the Deaf comprise 10%.

Figure 3: Total reports by victim's impairment
Impairment type %
Physical 42%
Hearing 10%
Visual 12%
Learning disability 23%
Mental health 13%

Cessation of violation
Of the 1,427 reports contained on the Database, violations were continuing at the time of notification in 28% of cases; we know that violations had ceased in 36% of cases and are unable to say whether the violation had ceased in 36% of cases. Just 90 of the human rights abuses recorded on the Database ceased as a result of legal intervention, 6% of all the reported cases. Despite the low number of reports indicating legal action prompting cessation of abuse, it has benefited 68,231 disabled victims. Twenty-three cases (1.6%) ended as a result of public opinion whilst 160 (11%) ended as a result of administrative intervention.

Violations resulting in death
At least 100,000 disabled people died as a result of the Nazi eugenics programme and, as this Project shows, another 5,047 have died as a result of abuse since the late 1980's.

Figure 4: Number of disabled people killed as a result of human rights abuse, by age range
Age Number
0-16 years 107
17-64 years 87
65+ years 75
All ages 104,778

There is a disproportionately high incidence of death amongst disabled children, which appears to reflect the still prevalent assumption that disabled lives are 'not worth living', such that newborn children with impairments are denied medical treatment or simply left to die. Often, the circumstances of the cases are nauseating:
  • A baby born at 23 weeks (17-weeks premature) was not resuscitated after developing pneumonia in the womb, although showing signs of life. The father said that the baby died in his arms after he was told by the doctor to "let nature take its course" (UK, 1995).
  • A child abandoned on the waiting room floor of the Peking Children's Hospital was left there for five days, in the hope that his parents might return for him. Another mother eventually persuaded medical staff to attend to him and he was diagnosed with severe encephalitis. Doctors said nothing could be done for him and the boy was placed in an unheated ward and left to die. Death came 11 days after the child was abandoned in the hospital (China, 1996).
  • In consultation with parents and other doctors, a lethal injection was administered to a 3-day old baby, born with Spina Bifida, water on the brain, and a bone marrow disorder. As is so often the case, and entirely perversely, the child was murdered to "prevent suffering". A criminal prosecution was launched against the doctor who was subsequently found guilty of murder; the court decided that it was 'appropriate' not to punish him (Holland, 1993).
  • A 27-week old foetus was aborted after medical staff incorrectly diagnosed a 'brain abnormality. The baby lived for 45-minutes after the abortion, but it was not until the post-mortem that it was discovered that the child was healthy in every respect. The coroner wanted to know why the baby had not been transferred to a special care unit after delivery, but we are unable to establish whether this question was ever adequately addressed (1994, UK).
At least two of the childhood deaths on the Database arose despite or, indeed, because, of legal intervention. For example:
  • 'Baby L' who was born 9 weeks premature with Moebius Syndrome and Polandsanomaly, the child was unable to see, hear or breathe unaided. The child's parents wanted their daughter to 'die with dignity', which she was likely to doeven if kept on 'life-support' machines. The hospital applied to make the girl a Ward of Court, so as to over-ride the parent's wishes and simply turn off all life support machines. Baby L died peacefully in her mother's arms after the Court ordered that life-support be withdrawn (New Zealand, 1998).
  • A mother was unhappy with the treatment offered to her five month-old baby girl who was suffering from a chromosome abnormality which caused her adiaphragmatic hernia and breathing problems. Eventually the child was transferred to a specialist paediatric hospital and, after a great deal of persuasion, doctors agreed to operate so as to improve her breathing. The child recovered from the surgery and was progressing well, until contracting a throat infection. The child was taken to another hospital, where doctors imposed a 'Do Not Resuscitate' order on the child, against her mother's wishes. The mother stayed with the child 24-hours a day and other family members visited often. Although the circumstances are disputed, it is clear that hospital staff called the police to eject a family member from the hospital and subsequently sought, and obtained, an Emergency Protection Order, severely limiting the time in which the mother was allowed to remain at the hospital. Whilst the mother was at court, seeking to have the order withdrawn, she was contacted by the hospital chief executive, informing her that her daughter had died (UK, 2000).
  • An 18 month-old toddler suffocated to death in hospital after doctors refused to give her antibiotics or put her on a ventilator. Although the parents appealed to the Courts to force the hospital to provide treatment, the judge declined their application, saying that because she was unable to raise her head off the pillow 'her life was not worth saving' (UK, 2000).
At the other extreme, the Database records a number of cases where elderly patients in the 'care' of hospitals and residential institutions died as a result of the actions of care staff:
  • A Danish doctor and nurse were charged with killing 22 elderly patients by morphine injection between August 1994 and March 1997 (Denmark, 1997).
  • Following discussion with her family, and despite the objections of nursing staff, a doctor ordered that his 85-year old patient be denied her food supplement. The elderly woman died of starvation and pneumonia 58 days later, weighing less than four stone. Prior to her death, the woman had suffered seven strokes, had mild Parkinson's disease and senile dementia, but she was not in a persistent vegetative state. The doctor's prosecution for murder failed for 'lack of evidence' (UK,1995).
  • Police were called in to investigate the deaths of 26 elderly patients, many of whom had advanced senile dementia, at a psychiatric hospital in Derby. It was alleged that the deaths had been caused by bronchial pneumonia, occasioned by the provision of inadequate food and hydration (UK, 1998).
  • A London nursing home charged £480.00 a week to provide care and accommodation to an elderly woman. Despite the high costs imposed to providecare, the woman's daughter found it necessary to provide additional food andtake her laundry home. After many complaints, the daughter decided to reduce the fees she paid to the home. Although managers allowed the elderly woman to continue living at the home, it would appear that staff made the resident's life asunpleasant as possible: the woman rang her daughter complaining of being coldafter her radiator had been turned off, staff forcibly administered Prozac against her wishes, whilst withholding drugs to control her heart condition; she became confused, violent and unable to sleep. Although rushed to hospital from theresidential home, the elderly woman subsequently died of pneumonia (UK, 1995).
Systematic violations
Of particular concern are the number of reports where abuse recorded on the Database relates to systematic abuse by public authorities, with U.S. police forces appearing with alarming regularity:
  • 12 people with mental health problems have been shot dead by Los Angeles police officers in the past six years. Six of these victims were black or Hispanic (USA,1999).
  • In 2000, a deaf man of 39-years was shot dead by a police officer after approachingthe officer with a garden rake. The victim was without speech and family members said he would not have understood the command "drop the rake" (USA, 2000).
  • A 27 year-old man with learning disabilities often left his local petrol station having forgotten to pay; staff knew the man and confirmed that he invariably returned to pay later. On the last occasion that the disabled man forgot to pay, in 2000, police chased his car, eventually cornering it on a bridge. The disabled man tried to ram a patrol car and was shot at least five times in the back, killing him (USA, 2000).
  • A 1993 investigation by U.S. reporter Denise Gamino revealed that 57 children died or received serious injuries while resident in Texas nursing homes. These deaths and injuries were attributed to staff negligence. Other children were found malnourished, unwashed and subjected to solitary confinement - in some cases the children were also bound by restraints (USA, 1994).
  • In 1998, the State of Oregon's Health Service Commission voted to allow state funds to be used for "physician - assisted suicide" for poor residents unable to afford medical care (USA, 1998).
Cause
For the first time with this Report, we have undertaken additional analysis, so as to offer data that categorises the cause of the victim's death. The data reveals nine broad categories of cause, which are listed with brief descriptions below:
  • Bureaucracy - as the name suggests, this is where victims die as the result of bureaucracy, often state agencies failing to provide services or support in a timely fashion. Also included is the action of utility companies, for example the disconnecting of electricity supply where a disabled person relies on electrically operated life-support equipment.
  • 'Care' - or, more properly, an absence of care. This category includes all disabled people who die due to an absence of adequate care or deliberate maltreatment when reliant on personal assistance from others.
  • Crime - although all deaths recorded on the Database might properly be viewed as crimes, this category lists death by assaults or homicide by common criminals.
  • Justice - once again, an ironic classification in view of the circumstances commonly listed on the Database; the category includes all disabled people killed by police agencies, the operation of the penal system or as a direct result of the decision of acourt.
  • Medical - includes withholding and withdrawing treatment by professional medical staff, medical research and negligent actions by hospital authorities.
  • 'Mercy killings' - include all cases where a disabled person is killed by a family member, often included within the newly-coined phrase: 'altruistic filicide'. As the circumstances of some of these cases show, the polite euphemisms used to describe murder by family-members are an obscene distortion of reality (see below).
  • Stigma - although infrequently reported, this category includes all disabled people who are killed or commit suicide as a direct result of a specific incident that stigmatises disabled people.
  • Superstition - as the example, below, illustrates some disabled people are still killed as a result of superstition.
  • Terror - thus far, this category is confined to acts of terror in Rwanda; however, it is anticipated that this category will be extended to include disabled people slaughtered during terror campaigns, particularly during civil war. The number of reports concerning the death of the victim contained on the DAA Database, together with the number of victims that perished, according to the foregoing classification, is presented in Table 5, below.
Table 5: Death of victim - number of reports and victims classified in nine categories
Category Reports Victims
Bureaucracy 14 4013
Terror 2 4000
"Care" 42 141
Medical 34 113
Crime 16 41
Justice 18 19
"Mercy" 14 15
Stigma 4 4
Superstition 1 1

Examples of cases by classification
Bureaucracy
  • A 7 year-old boy with Wolff-Parkinson-White syndrome, a rare heart disorder, was given Disability Living Allowance at the age of four to help meet the cost of his care. The Allowance was withdrawn because the Benefits Agency decided he was 'not ill enough' to receive it any longer. The boy died two days after withdrawal of the Allowance (UK, 1997).
  • A mother killed her son and herself by carbon monoxide poisoning shortly after being refused extra home support by the Community and Social Services Ministry. Her 16 year-old son had cerebral palsy and was deaf-blind but enjoyed life and was integrated into a main-stream school (Canada, 1994).
  • An elderly man died after his electricity supply was cut off for non-payment of a bill. The man could only breathe with the aid of a respirator. The utility company concerned sought to explain its actions by claiming that 'it was unaware of his state of health' (France, 1999).
Terror
  • Hutu soldiers and death squads killed almost all the patients with learning difficulties and mental health problems in Rwanda's psychiatric hospital - 700 in all - during the slaughter prior to the government's overthrow (Rwanda, 1994).
  • Prior to the widespread genocide inflicted on Rwandans, the country had a population of 3,000 to 4,000 deaf people. During the fighting between the Hutu and Tutsi, large numbers of deaf people were slaughtered and had slim chances of escape (Rwanda, 1994).
'Care'
  • An 89 year-old man with dementia had his pressure sores 'treated' by the owner of the residential home in which he lived, by hacking away at his rotting flesh with scissors and ripping out the residue with rubber gloves he had just used to remove faeces from bedding. Although a newly appointed manager 'blew the whistle' about what other staff referred to as 'the body in the attic', the patient died of pneumonia in hospital shortly after his removal from the residential home (UK, 1998).
  • According to a media enquiry, 28 deaths were caused by 'substandard' care provided by nursing homes in two counties between January 1999 and March 2000 (USA, 2000).
  • Amongst a number of unexplained deaths in New South Wales institutions is the case of a man who died after allegedly tying a wet sock around his own neck (Australia, 1997).
  • A patient who was supposedly under "constant observation" at a Glasgow hospital fell to his death from Erskine Bridge. The patient had set fire to himself, slashed his wrists, attempted to hang himself with his shoelaces and absconded. Staff denied ever hearing the patient say that he wanted to kill himself, although it was recorded in the patient's medical notes (UK, 1992).
Medical
  • Please see the examples listed above.
Crime
  • A mentally ill person was murdered and decapitated in N'djamena's Grand Central Market. The victim's head was stolen, probably to be used in a ritual (Chad, 1998).
  • A woman previously diagnosed as paranoid schizophrenic was burnt to death by villagers, after having had her fingers cut off and eyes put out. The explanation provided for this brutality was an unsubstantiated claim that the woman had burned a copy of The Koran (Pakistan, 1999).
  • Three girls tortured a teenager with mental health problems by setting fire to her hair, beating and locking her in a cupboard prior to strangling her (UK, 1999).
'Justice'
  • A man with schizophrenia was manhandled by police after he absconded from a general hospital. When he tried to escape he was struck with a truncheon, had a heart attack and choked. He was put face down in a police van, handcuffed and driven to a police station. Pronounced clinically dead for ten minutes, the man was resuscitated but remained in a coma for more than a year before dying (UK, 1997).
'Mercy' killings
  • A 70 year-old man killed his 86 year-old disabled wife because he wanted to "end her suffering". The woman, who had severe arthritis, was battered with a hammer and strangled. Her husband received a two year suspended sentence (UK, 2001).
  • A father shot his 35 year old learning disabled daughter. After killing her, the father committed suicide (Canada, 1996).
Stigma
  • A man who stammered was told he could have a job, having previously been unsuccessful at a series of job interviews, if he 'sorted out' his impairment. The man shot himself (UK, 1996).
  • A 46 year old disabled man, a former athlete, committed suicide having been spat on, abused and beaten in the street. On an expedition with his wife, youths shouted: 'Under Hitler you would have been gassed' and 'you are living off our taxes' (Germany, 1992).
Superstition
  • Police detained an exorcist after a woman with epilepsy was beaten to death with a stick and belt, allegedly in an attempt to rid her of four spirits believed to be causing her seizures (Egypt, 1999).
Article 3: Everyone has the right to life, liberty and security of person
141 of the reports - affecting at least 423,427 disabled people - recorded in the database concern breach of Article 3: the right to life, liberty and personal security. Slightly more breaches of Article 3 were committed on men (54 of the reports) than women (51 reports), although abuse was also inflicted on men and women alike in 31 of the reports.

Unsurprisingly, in view of the age ranges used for the Database (Age 0-16 years, Age 17-64 years and Age 65+), most reports involving breach of Article 3 involved disabled people between the ages of 17 and 64 years (37%); however and alarmingly, the number of reports concerning the abuse of children were almost identical (36%), indicating the quite horrendous risk to the lives, liberty and personal security of disabled children, who are estimated to comprise no more than 2% - 4% of the disabled population. [note 3]

As might be expected, many of the human rights abuses committed against young children involve the withholding of lifesaving treatment, even where such treatment is routine for non-disabled children. Put simply, often quite minor impairments are seen as justification for refusing nourishment and hydration for new-born disabled children:
  • In 1987, a baby born with Down's Syndrome and oesophageal atresia in a Canadian hospital was denied nourishment and fluids after parents had refused to allow an operation to repair the 5 cm. missing from his oesophagus. The baby died 11 days later.
  • A Lancet report published in 2000 shows that nearly three-quarters of doctors caring for newborns in France have 'frequently' administered drugs so as to end the lives of those with 'an incurable medical condition'.
  • In 1997, German medical staff performed an abortion on a 25-week old foetus; having been removed from the mother, the baby survived for 8 hours without being given any healthcare. The clinic involved states that it induced the birth because the baby had Down's Syndrome and that the mother was warned the baby might survive.
  • In 1993 a Dutch doctor administered a lethal injection to a 3-day old baby who had been born with Spina Bifida, water on the brain and a bone marrow disorder. The injection was administered, following consultation with the parents and other doctors, in order to "prevent suffering". Although the Doctor charged and subsequently convicted of murder, the court declined to punish him. Fifteen per cent of cases involved abuse of elderly disabled people but we do know that the number of cases is a poor reflection of the number of victims. Many of the reports on the DAA Database concern the withdrawal of medical treatment from people in this age group and, in the absence of suspicion in previous deaths, there can be no way of knowing how many other people have been killed by healthcare professionals:
  • After his 78 year old patient had a brain haemorrhage a U.S. doctor gave her massive doses of painkillers, instructed that a magnet be placed over her pacemaker, in an attempt to stop it and was taken off life support machines against her will. Finally, the doctor ordered that the woman be injected with a paralysing drug; she died 15-minutes later.
  • A Danish doctor and nurse were charged with killing 22 elderly patients by morphine injection, between August 1994 and March 1997.
63% of cases recorded on the Database involve the abuse of people with physical impairments, 44 % involve people with learning impairments and 26% people with mental illnesses. However, the review of cases fails to reveal that, in fact, when victim numbers are calculated, people with mental illness and learning difficulties are at highest risk (55% and 38% more likely to be victims, respectively); those at greatest risk are people with multiple impairments.

The UK (54 reports) and the USA (34 reports) are the states from which the most Article 3 abuses are recorded on the DAA Database.

Conclusion
Whilst this Report has detailed just a fraction of the data contained in the DAA Human Rights Database, with a particular emphasis on the most serious violations, the Database has conclusively shown that disabled people continue to endure significant human rights abuse. The now ubiquitous discussion of 'equality' and the tools by which it might be obtained, too rarely acknowledge that the barriers facing disabled people include threats to our very existence.

Whether as a result of euthanasia, the refusal of medical treatment or inadequate safeguards for medical research, we may rapidly be reaching the point at which disabled people avoid obtaining medical treatment, for fear of the outcome. There can be no doubt that there is a pressing need for the construction of adequate safeguards for disabled people as patients and research subjects. The financial implications of a biotechnology industry, whose market worth far exceeds their profitability, make such safeguards all the more necessary.

At the opposite end of the technological spectrum, the DAA Database illustrates that cutting-edge medical technology is something from which disabled people rarely obtain adequate benefit. Poverty and disability remain fundamentally linked in every region of the world and the refusal to provide even the most basic healthcare or drugs demands that we must guard against the technological euphoria induced by gauche marketing, masquerading as 'news'. [note 4]

Far from obtaining protection from police agencies, the Database also shows that police officers are, themselves, a significant source of risk for disabled people. Obtaining physical access to police stations is all well and good, but there is a clear need to ensure that disabled people, particularly those with mental illness and sensory impairments, are protected from disproportionate inflicted by ignorant, bullying or fearful police officers. All of us involved in its operation would be the first to acknowledge that the DAA Database is an imperfect and partial solution to the abuse of disabled people's human rights but, no matter how inadequate to the task, the Database does evidence, for the first time, that disabled people's human rights remain inadequately respected or protected.

Perhaps the greatest challenge facing DAA is the effort involved in seeking to obtain adequate funds to continue with our work on the Human Rights Database. Whether the project is insufficiently 'sexy', or altogether too threatening, for traditional funding agencies, we continue to face significant difficulties in funding the project. Such resourcing difficulties are particularly frustrating in view of our desire to increase human rights awareness amongst disabled people and their representative organisations.

Whatever the shortcomings and frustrations our fervent hope is that, faced with this evidence of widespread abuse, disabled people can expect more than mere rhetoric from politicians and governmental-agencies.

Notes
  1. DAA has just three full-time members of staff, one of whom is employed solely to enter cases into the Human Rights Database.
  2. 309 reports contain information about abuse where the numbers affected are unknown; however, many of these reports concern endemic and systemic abuse of substantial numbers of disabled people.
  3. Protecting the human rights of children has recently been the subject of a separate project, managed by DAA, which has led to the production of a report: It is our world too!, that will be presented at the UN General Assembly Special Session on Children in New York later this year.
  4. Or, indeed, allowing drugs companies' tax credits for dumping unprofitable or short-dated drugs on the developing world or in areas of armed conflict.


Individuals and organisations are free to use material from this report, with the sole restriction that it must be credited to DAA.

Copyright Disability Awareness in Action 2002
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DAA
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DAA is a collaborative project between Disabled Peoples' International, IMPACT, Inclusion International, and the World Federation of the Deaf.

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