Shantha Rau Barriga is director of the disability rights division at Human Rights Watch. She leads research and advocacy on human rights abuses against persons with disabilities worldwide including: the shackling of people with psychosocial disabilities, denial of education for children with disabilities, violence against women and girls with disabilities, institutionalization of children and adults with disabilities, and the neglect of people with disabilities in humanitarian emergencies. She has worked on projects on Central African Republic, China, Croatia, Ghana, India, Indonesia, Morocco, Nepal, Peru, Russia, Serbia, Uganda, the United States, Yemen and Zambia.  

Shantha was a member of the UNICEF Advisory Board for the 2013 State of the World’s Children report and is a founding member of the International Network of Women with Disabilities. 

Before joining Human Rights Watch, Shantha participated in the UN negotiations toward the Convention on the Rights of Persons with Disabilities. Shantha received degrees from the Fletcher School of Law and Diplomacy at Tufts University and the University of Michigan, and was a Fulbright Scholar to Austria. She speaks German and Kannada.

Posted: January 1, 1970, 12:00 am

(Mexico City, October 17, 2017) – Mexico’s Congressional Mental Health and Drug Commission is considering a national mental health bill that proposes to improve mental health services for all in Mexico but would seriously jeopardize the rights of people with disabilities, Human Rights Watch said today.

In a letter sent on October 16, 2017, to the Commission on Health and Drugs in the Chamber of Deputies, Human Rights Watch urged the commission to reject the bill in its current form. The commission should revise the bill to reflect a human rights-oriented framework, based on consultations with organizations representing people with disabilities and disability rights experts. The final bill should ensure the right to mental health for all in Mexico on an equal basis, without resort to forced treatment, and be consistent with Mexico’s laudable international commitments to the rights of persons with disabilities.

“The bill before the commission unfortunately reflects a discredited approach to mental health, focusing on forced medical treatment instead of on the consent, autonomy, and rights of those in need of mental health services,” said Carlos Ríos Espinosa, senior researcher and advocate for disability rights at Human Rights Watch. “The bill is inconsistent with Mexico’s human rights obligations, in particular the right to consent to or refuse treatment, which is an integral aspect of the right to health.”

Mexico was an early champion of the United Nations Convention on the Rights of Persons with Disabilities (CRPD), signing the treaty when it was first opened and becoming a full party to the CRPD in 2007. The Mexican government has the opportunity with this new law to incorporate the standards of the CRPD into domestic law and protect the rights of persons with disabilities. It should follow the example of other countries and international organizations, such as the World Health Organization, that are developing new mental health policies that respect the rights of people with disabilities and emphasize people’s right to choose and to govern their own lives. In particular, it should act on the recommendations to it from the CRPD Committee to:

  1. Eliminate security measures that mandate medical and psychiatric inpatient treatment and promote alternatives that comply with articles 14 and 19 of the Convention;
  2. Repeal legislation permitting detention on grounds of disability and ensure that all mental health services are provided based on the free and informed consent of the person concerned.

The current bill would still allow people to be locked up against their will on the basis that they had a diagnosed disability, Human Rights Watch said  But UN experts on health and torture and the UN expert body on disability rights have emphasized that forced treatment and other nonconsensual invasive measures, including involuntary admission to psychiatric hospitals for medical treatment, should be ended.

The bill would provide broad authority for medical and judicial authorities to find that people labeled as having “mental disorders” do not have the capacity to make decisions for themselves. In such circumstances, the bill authorizes involuntary hospitalization and treatment without the person’s consent. Under human rights norms, people with disabilities may not be detained on the basis of their disability, and may only be detained, on an equal basis with others, if they engage in behavior that constitutes grounds for detention for everyone under the law.

Among other worrisome elements, the bill allows the solitary confinement of and use of physical restraints on people with “mental disorders,” which experts agree can constitute torture or cruel, inhuman, or degrading treatment.

“It is commendable that the commission is devoting time and effort to enhance the right to health for all Mexicans, but it’s all the more important for them to get it right,” Rios Espinosa said. “The commission should create a framework for health services that respects the right to informed consent, whether you have a disability or not.” 

Posted: January 1, 1970, 12:00 am

Human Rights Watch is an independent, non-governmental organization dedicated to defending and protecting human rights, working in more than 90 countries. We conduct research on the rights of persons with disabilities around the world, including in Latin America.

Human Rights Watch welcomes your commitments to advance the rights of citizens of Mexico to access mental health care. These efforts can be beneficial for building a stronger legislative framework to provide mental health services for the Mexican population at large, and will hopefully bring Mexico in line with its international obligations on disability rights.

We would like to raise our concerns in relation to the proposed bill on mental health (Iniciativa con Proyecto de Decreto por el que se crea la Ley Nacional de Salud Mental) that is currently in front of the chamber of deputies.

We urge the Mental Health Commission to not approve the bill in its current form but rather propose a revised bill that reflects a human rights-oriented framework, developed in consultation with disabled persons organizations and disability rights experts, to ensure the right to mental health for everyone in Mexico without resorting to coercive treatment.

The paradigm shift towards human rights-based model of disability

As the Special Rapporteur on the Right of Everyone to the Enjoyment of the Highest Attainable Standard of Physical and Mental Health, Mr. Dainius Pūras, noted in his latest report “[e]veryone, throughout their lifetime, requires an environment that supports their mental health and well-being; in that context, we are all potential users of mental health services.”[1] Mental health policy, including legislation, should address mental health services for everyone and not just for those who are labeled, as the proposed bill does, to have “mental illness” or “mental disorders” (psychosocial disabilities).

The Convention on the Rights of People with Disability (CRPD), to which Mexico became a state party in December 2007, establishes a paradigm shift based on a human rights-based model in opposition to a medical model that considers disabilities, including psychosocial disabilities, “illnesses” or impairments. Instead of focusing on the specific features of the person, the new paradigm underscores the relational character of disability and its evolving nature. It is the impairment (including physical, sensory, or mental), in interaction with the environment and other attitudinal barriers, which constitutes a disability. The bill under consideration includes multiple references to the need to have regard to the CRPD when developing the provision of mental health services in Mexico.

The mental health bill and the medical model of disability

The bill that is now currently the subject of discussion with the Mental Health Commission depends heavily on a coercive framework for mental health treatment of persons with psychosocial disabilities (mental health conditions) as well as persons who are considered to be dependent on drugs. Any approach to mental health should follow a human rights model. The CRPD Committee, the Special Rapporteur on the Right of Everyone to the Enjoyment of the Highest Attainable Standard of Physical and Mental Health, and the Special Rapporteur on Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, have all emphasized the need to abandon the use of forced treatment and other nonconsensual measures, i.e. involuntary admission to psychiatric hospitals for medical treatment.

An integral part of the right to health, including mental health, is the right to consent to treatment, both as a freedom and an essential safeguard to its enjoyment. This includes the right to refuse treatment.[2] Mexico needs to move away from a paternalistic approach towards mental health and build on alternatives that emphasize peoples’ right to choose and govern their own lives as a core element. In the realm of mental health, an array of services should be made available from which people can choose freely, instead of continuing coercive policies, such as involuntary treatment, forced medication, and others.

Human Rights Watch is concerned that the proposed bill is deeply entrenched in the medical model of disability and the language used is inappropriate and outdated, for example using terms like “mental disorder” (instead of psychosocial disability), and “mentally ill patients” (instead of persons with mental health conditions). Although there is an explicit recognition of the obligations set forth in the CRPD, certain provisions in the bill are in direct opposition to them.

Currently, several countries and international organizations are working together to transform mental health policies that are conducive to ensure access to services that are respectful of human rights. We call on the mental health and drugs commission of the chamber of deputies in Mexico to review new trends that are currently being constructed to this effect, like the one that is currently being promoted by WHO.[3]

Broad exceptions to fundamental rights

The bill provides for measures such as “selective intervention for families at risk” (article 23, I) and “early interventions in schools”. The bill however does not define the exact scope of these measures which leaves open the possibility of misguided measures emerging that are overly intrusive and fail to respect the rights of persons with mental disability or mental health issues. There is no consensus as to what is to be understood by “families at risk”. Such vague terms could lead to the biased application of the law, for instance, a bias towards believing that one parent households are more at risk of mental health problems. Likewise, children who are poor at complying with very rigid rules of discipline, could be labeled in these “early interventions” as having “mental issues”.

Designed as preventive measures to avoid so-called “mental disorders”, these policies, if subject to overly broad discretion, poorly implemented, and absent close monitoring and review including appeal by the families, could lead to the possibility of medicalizing families and school environments, and prompting screenings on persons that might have unorthodox living styles that could be considered signals of “mental disorders”.[4]

Likewise, the bill establishes several exceptions to the fundamental rights of persons with psychosocial disabilities but does not spell out the limits on exceptions to ensure that they are compatible with human rights law, such as the exceptions must be for a legitimate aim, proportionate to achieving that aim and non-discriminatory. Such exceptions apply to areas such as patient confidentiality and the prohibition of involuntary hospitalization. (Article 24, IV and VIII)[5]

The confidentiality principle between patient and psychiatrist means that the patient has the right to keep his or her medical record and interactions with mental health professionals confidential, thus mental health professionals have the duty not to disclose any information. The proposed bill recognizes this principle but foresees exceptions to the obligation, referring in general to applicable legal norms that might lead to the principle being breached in ways that are unjustified. The proposed bill should clarify with greater precision when and what types of exceptions exist and how those can be compatible with human rights protection.

Involuntary hospitalization can happen relatively easily and anyone, such as the police or a member of the community, can ask the health authority to determine that the hospitalization of a person should be permitted because the requestor believes a person might have a “mental disorder” (Article 53) and pose a threat.[6] Article 14 of the CRPD protects the right of persons with disabilities to liberty and they cannot be deprived of liberty on the basis of disability. Involuntary hospitalization amounts to deprivation of liberty because the person is not free to decide whether he or she wants to be admitted to a medical facility and when such involuntary hospitalization is based on a disability, it is arbitrary.

Infringement to the right to informed consent and the right to legal capacity

Article 26 of the bill establishes a general provision allowing the restriction of human rights for persons with disabilities when there is a need to protect the safety and security of the person or other persons, or to protect security, public order, public health, or third parties’ rights. [7]

In principle, the bill recognizes that persons with psychosocial disabilities must consent to any treatment and have a right to refuse and it is presumed they have capacity of discernment. Nevertheless the bill also makes it easy for medical staff or judicial authorities to challenge a person’s capacity (article 31 and 32).[8] The exception is so broad the risk is that involuntary treatment will become the rule. The right to be treated only on the basis of informed consent, which is a core component of the right to health, can be limited in cases of urgency, when it is determined that the person needs to be involuntarily hospitalized, or when health professionals consider there is evidence that treatment is the best alternative to the patient’s needs. These exceptions are so broad that it threatens to deprive the right of all substance (article 24, VIII)[9].

Article 30 of the bill, in conjunction with article 31, provides that family members who are assuming responsibility for the care of persons deemed to have “mental disorders” have the right to be involved in the formulation and implementation of treatment if the person is said to lack capacity.[10] Where this constitutes a situation that a person can be treated without their informed consent, or against their wishes, then this violates the right to health.[11]

The CRPD Committee has held that forced treatment by psychiatric and other health and medical professionals is a violation of the right to equal recognition before the law and an infringement of the right to personal integrity (article 17); freedom from torture and inhuman and degrading treatment (article 15); and freedom from violent exploitation and abuse (article 16). Non-consensual medical treatment denies legal capacity of a person to choose medical treatment and is therefore a violation of article 12 of the CRPD. The Special Rapporteur on the Right to Health has noted that where grounds of “medical necessity” and “dangerousness" of the person are used as justification for non-consensual treatment their application is open to broad interpretation and, consequently, raises questions of arbitrariness.[12]

State parties to the CRPD have an obligation to respect legal capacity of persons with disabilities to make decisions at all times, even in crisis situations. If the person so requests, state parties have an obligation to provide access to supported decision-making regarding psychiatric and other medical treatment. Decisions relating to a person’s physical or mental integrity should only be taken with free and informed consent of the person concerned.[13]

Involuntary hospitalization and violations to the right to liberty

Article 36 of the bill says that no one shall be obliged to submit to a mental health evaluation to determine if he or she has a “mental disorder”[14], however, a family member, the police, a judicial authority, a psychiatrist or a member of the community (article 53) can request a health authority to agree to the involuntary hospitalization of a person, if they consider he or she has a “mental illness”, with the goal of “protecting” the person from harm to self and others, or when they are disturbing “public order”.

Detention of persons with disabilities in institutions against their will, either without their consent or with the consent of a substitute decision-maker, because of their disability, or assumptions that they will cause harm because of their disability, constitutes arbitrary deprivation of liberty and violates articles 12 and 14 of the CRPD.[15] Detention on the basis of medical necessity or for the purpose of treatment for drug users has also been criticized by the Special Rapporteur on Torture on the basis that it opens the way for abuse and it has no scientific basis.[16]

The CRPD Committee has held that there are no exceptions to the right to liberty and security of the person because of actual or perceived disability. Any mental health legislation authorizing involuntary internment or hospitalization on the basis of “danger” for self and others which is based on the alleged dangerousness of the impairment of a person is contrary to the right to liberty as established in article 14.2 of the CRPD.[17]

In October 2014, the CRPD Committee in its Concluding Observations on Mexico, called on the government to:

(a) Eliminate security measures that mandate medical and psychiatric inpatient treatment and promote alternatives that comply with articles 14 and 19 of the Convention;

(b) Repeal legislation permitting detention on grounds of disability and ensure that all mental health services are provided based on the free and informed consent of the person concerned.[18]

The Commission should therefore use this opportunity to act on the Committee’s recommendation and not to reinforce legal provisions and practices that are inconsistent with the CRPD. Persons with disabilities can be detained, on an equal basis with others, when they engage in behavior that would constitute a legitimate cause for detention for everyone else. In these cases, reasonable accommodation should be provided when it is so required.

Mexico’s constitutional framework only permits detention of persons when there is a criminal or administrative infraction, cases of foreigners with irregular migration status, and for extradition purposes.[19] The Mexican Constitution warrants no detention on the basis of disability or perceived disability, so enabling involuntary hospitalization contradicts the Mexican Constitution and constitutes disability-based discrimination according to article 1 of the Constitution.

Solitary confinement and physical restraint

The proposed bill also considers the possibility of applying solitary confinement and physical restraints on persons with “mental disorders”. Article 66 establishes the possibility of applying restraints for 72 hours when there is a need to control situations of “unmanageable violence”, or when the person has lost “sense of reality”, and to prevent harm to self and others.[20] The CRPD Committee has stated in numerous concluding observations that mental health laws that condone the practice of restraining persons with disabilities or using other coercive measures to control them, still reflect the medical model of disability and should be repealed.[21]

Moreover, the special rapporteur on torture has emphatically stated that “it is essential that an absolute ban on all coercive and non-consensual measures, including restraint and solitary confinement of people with psychosocial or intellectual disabilities, should apply in all places of deprivation of liberty, including in psychiatric and social care institutions.”[22] Passing this bill would be to flagrantly ignore the CRPD committee’s recommendations to Mexico issued in 2014, in which the Committee expressed serious concern with respect to human rights violations committed against persons with psychosocial disabilities, “such as physical restraint and placement in isolation”, which might even “amount to acts of torture or cruel, inhuman or degrading treatment”.[23] The bill under consideration is in startling contrast to the CRPD Committee’s explicit recommendations.

Article 55 provides for circumstances in which psychosurgery, irreversible medical treatments, and electroconvulsive therapy can take place. While the provision is subject to further development in guidelines to be issued by the health authority, there is the possibility that at least some of these procedures will be allowed proceed without the informed consent of the person receiving. [24]

We would appreciate your interest to discuss these issues further with Human Rights Watch and other disabled persons organizations who have also expressed their concerns on several aspects of this proposed bill.

 

[2] Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health A/HRC/35/21, paragraph 63.

[3] Realising recovery and the right to mental health and related services - WHO QualityRights training to act, unite and empower for mental health (pilot version). Geneva: World Health Organization; 2017 (WHO/MSD/MHP/17.4). Licence: CC BY-NC-SA 3.0 IGO.

[4] Article  23. Policies of prevention, alongside the promotion of mental health, should be oriented by the needs of the population and cover different environments. These policies, should include, among other actions:

II. Selective interventions with at risk families and confronting family disintegration;

III. In schools, the development of life skills, coexistence skills, education in values, as well as early intervention in schools to promote a healthy environment amongst pupils;

[5] "Article  24. It is recognized as fundamental freedoms and human rights to each people with mental disorders and drug addictions the following:

IV. Right to confidentiality of personal information, information derived from the relation between the psychiatrist and the patient and confidentiality of treatment established in the clinical file. Except in cases provided in the applicable legal norms.

[6] The  mandatory internment refers to the one that is determined by the sanitary or judicial authority. Mandatory internment could be administrative, when it is determined by the sanitary authority, upon the request of the family, police authority, a certified psychiatrist responsible for the patient, or some member of the community, with the goal of protecting the person who apparently has a mental illness or whose behavior is endangering his integrity or that of third parties, or to avoid alteration of public order.

Mandatory internment should be reevaluated every five days with the opinion of another certified psychiatrist, that doesn't belong to the interdisciplinary team responsible for the patient to inform the sanitary authority about the situation of the patient.

Judicial mandatory internment is determined by a judge and it should be based on the recommendation of an expert opinion of a physician about the situation of the patient. The interdisciplinary team must inform the judge every 10 days about the evolution of the patient and if he has obtained a therapeutic goal of the internment.

[7] Article  26. The exercise of fundamental rights and safeguards to which this law makes reference can only be subject to limitations in those cases provided by the Constitution, the Mexican laws or international treaties the project health and security of the person, or to protect security, order, public health or fundamental rights of third persons.

[8] Article 31. Every treatment and internment of patients with mental disorders or drug addictions should be administered with prior informed consent, except were there are exceptions to mandatory and involuntary procedures.

Article 32. In order to be valid informed consent must satisfy the following criteria:

I. Person giving informed consent should have capacity to do so, capacity is presumed except when the contrary is proven.

[9] Article 24: VIIII. Right to informed consent of the person or his representative in relation to treatment or internment. Informed consent will not be needed in cases of involuntary internment, when there is an urgent case, or when it is proven that the treatment is the better way to meet with the patient needs.

[10] Article  30: III. Families have the right to be involved in the framing and implementation of treatment.

[12] Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health A/HRC/35/21, paragraph 64.

[14] The determination of a diagnostic of a mental disorder or drug addiction, shall be established in accordance with internationally accepted medical norms. No one can be forced to medical screenings to determine if they are suffering from a mental disorder or drug addiction, unless the screening is determined when there is mandatory and involuntary treatment.

[15] CRPD Committee, General Comment 1, CRPD/C/GC/1 paragraph 40.

[16] Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Juan E. Méndez A/HRC/22/53, paragraphs 40, 41 and 42. February 2013. http://www.ohchr.org/Documents/HRBodies/HRCouncil/RegularSession/Session...

[17] Guidelines on article 14 of the Convention on the Rights of Persons with Disabilities. The right to liberty and security of persons with disabilities. Paragraph 6.

[19] Political Constitution of the United Mexican States (articles 16, 33, and 119)

[20] Article  66. Isolation and physical restraints as means of control can only be applied in exceptional cases, as a therapeutical last resource when there is a situation of unmanageable violence, alongside the lost of judgment and sense of reality, or when there is lack of real conscience of the state the person is in, and, as long as there is the purpose of protecting health or integrity of the ill person and of those who are surrounding him in providing care, in accordance with the criteria of the physician in order to avoid an immediate harm to the patient or third persons. The patient under this measure will be under the care and monitoring of qualified staff at every moment.

Solitary confinement and physical restraints should never be determined to punish the person or for the convenience of the staff. The time of application of solitary confinement and physical restraints can never exceed 72 hours and should be authorized by the interdisciplinary team. The sanitary authority must publish the guidelines for psychiatry contention.

In order to apply contention measures professional personnel and train technical staff are needed. The employment of contention measures should be reduced to a minimum.

Duration and reasons for the application of contention measures should be registered immediately in the patient's clinical file and should be informed in the weekly report in order to be reviewed systematically.

The family member or legal representative of the patient should be informed about the application of these contention measures.

[21] Armenia, concluding observations CRPD/C/ARM/CO/1, paragraph 25; Bosnia and Herzegovina, Concluding Observations CRPD/C/BIH/CO/1, paragraphs 27 and 28; Lithuania, Concluding Observations CRPD/C/LTU/CO/1, paragraphs 29 and 30; New Zealand, Concluding Observations CRPD/C/NZL/CO/1, paragraphs 31 and 32; Republic of Moldova, Concluding Observations CRPD/C/MDA/CO/1, paragraph 30; Ethiopia, Concluding Observations CRPD/C/ETH/CO/1, paragraphs 33 and 34; Serbia, Concluding Observations CRPD/C/SRB/CO/1, paragraphs 27 and 28; Slovakia, Concluding Observations CRPD/C/SVK/CO/1, paragraph 45 and 46; Thailand, Concluding Observations CRPD/C/THA/CO/1,  paragraph 31; Uganda, Concluding Observations CRPD/C/UGA/CO/1, paragraph 28; Kenya, Concluding Observations CRPD/C/UGA/CO/1, paragraphs 29 of 30; Croatia, Concluding Observations CRPD/C/HRV/CO/1 , paragraphs 23 and 24; Czech Republic, Concluding Observations CRPD/C/CZE/CO/1, paragraph 31 and 32; Germany, Concluding Observations CRPD/C/DEU/CO/1, paragraph 33 and 34; Denmark, Concluding Observations CRPD/C/DNK/CO/1, paragraphs 38 and 39; Republic of Korea, Concluding Observations CRPD/C/KOR/CO/1, paragraphs 29 and 30; Mexico, Concluding Observations CRPD/C/MEX/CO/1, paragraphs 31 and 32; Australia, Concluding Observations CRPD/C/AUS/CO/1, paragraphs 35 and 36; El Salvador, Concluding Observations CRPD/C/SLV/CO/1, paragraphs 37 and 38.

[22] Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Juan E. Méndez A/HRC/22/53, paragraph 63. February 2013. http://www.ohchr.org/Documents/HRBodies/HRCouncil/RegularSession/Session.

[23] Mexico, Concluding Observations CRPD/C/MEX/CO/1, paragraphs 31 and 32.

[24] Article  55. Sterilization, psychosurgery, other irreversible treatments, electroconvulsive therapy, experimental treatment are considered special treatments. The following should be considered:

I. Chemical techniques or sterilization shall never be applied as part of psychiatric treatment;

III. Psychosurgery or other irreversible treatments or those that modify the integrity of the person, shall not be applied, they can only be applied (sic) if authorized by legislation, with the consent of the patient, and following a specific protocol.

IV. Electroconvulsive therapy shall be applied only with the informed consent of the patient or the consent of his legal representative or guardian, as long as the protocol is followed. Electroconvulsive therapy on minors should be subjected to the evaluation of an ethical and medical committee of the institution. The use of electroconvulsive therapy on children below 12 years old is prohibited.

Posted: January 1, 1970, 12:00 am

The head of Ghana’s Mental Health Authority announced that as of October 10, World Mental Health Day, the country’s ban on shackling – in place since 2012 – will finally be properly enforced.

When I picked up the chain that had been tied around his ankle I could barely lift it. It felt like a pile of bricks and made a heavy thumping sound when I dropped it to the ground. It was here, at Nyakumasi Prayer Camp in central Ghana several years ago, where I first met “Solomon” (not his real name), a man in his 50s with a ragged blue cloth around his waist and a thick metal chain around his ankle.

Solomon’s parents had brought him to the camp because they thought he had a mental health condition. They – like many others – believed his disability was caused by a curse or demons, and brought him to the camp for spiritual healing. His ‘treatment’ consisted of regular prayers and a bit of medication, while being chained to the same spot – where he had to sleep, eat, and defecate – for nine-and-a-half long years. When I asked what he did all day, he replied: “Nothing.” He said he didn’t want to be there and wanted to be freed, but his pleas went unanswered.

In June, however, the Ghanaian government finally freed Solomon, along with 15 other people with real or perceived mental health conditions who were shackled in this camp, including two 12-year-old girls.

This week, I returned to Nyankumasi to see for myself. The sight of the shackles still lying beneath the trees was an eerie reminder of what was – and still is – a common practice. People in Ghana resort to shackling people with psychosocial disabilities because they see no alternative. There are not enough community mental health services to cope. And there is too much stigma and misunderstanding around mental health.

I also visited Ankaful Psychiatric Hospital, where Solomon and some of the others are now living. Solomon immediately recognized me and smiled. “Now I’m free,” he told me.

The head of Ghana’s Mental Health Authority announced that as of October 10, World Mental Health Day, the country’s ban on shackling – in place since 2012 – will finally be properly enforced. While progress at Nyankusami is important, it’s just one of many camps where people with mental health conditions are shackled. Much more needs to be done. We and other groups are now urging the government to invest in community mental health services, so other families won’t resort to chaining their loved ones.

People like Solomon are counting on it.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

The head of Ghana’s Mental Health Authority announced that as of October 10, World Mental Health Day, the country’s ban on shackling – in place since 2012 – will finally be properly enforced.

Posted: January 1, 1970, 12:00 am

People with real or perceived psychosocial disabilities live in inhumane conditions, isolated from society in prayer camps, where they often are shackled for days or even years. © 2017 Shantha Rau Barriga/Human Rights Watch

(Accra) – The government of Ghana should ensure adequate funding for mental health services in Ghana, as a crucial step to eliminating the widespread practice of shackling and other abuses against people with psychosocial disabilities, a coalition of nongovernmental groups said today.

On the eve of World Mental Health Day, October 10, 2017, the coalition said that the finance minister should set a levy to support mental health services, as required by Ghana’s 2012 Mental Health Act. The coalition includesMindFreedom GhanaMental Health Society of GhanaBasicNeeds GhanaLaw and Development Associates,Human Rights Advocacy Center, Christian Health Association of Ghana, Human Rights WatchCBMDisability Rights Advocacy FundAnti-Torture Initiative, and former United Nations Special Rapporteur on Torture Juan Mendez.

“People in Ghana resort to shackling people with psychosocial disabilities because they see no alternatives,” said Peter Yaro, executive director of BasicNeeds Ghana. “It’s now been five years since the passage of the Mental Health Act and it is high time for the government to invest in community-based mental health services so people with psychosocial disabilities can get the support they want, instead of ending up in shackles.”

It’s now been five years since the passage of the Mental Health Act and it is high time for the government to invest in community-based mental health services so people with psychosocial disabilities can get the support they want, instead of ending up in shackles.

Peter Yaro

Executive Director of BasicNeeds Ghana

The Mental Health Act of 2012 lays out the legislative framework for a levy, and says the finance minister should set up this resource to fund mental health services through parliament. The levy has yet to be established.

Ghana has made progress in safeguarding the rights of people with disabilities following reports by Human Rights Watch and the former United Nations special rapporteur on torture, Juan Mendez. In July, the Mental Health Authority oversaw the release of more than a dozen people with disabilities who were chained in Nyakumasi Prayer Camp in the Central Region. With pressure from local and international groups, the Mental Health Authority has taken steps to enforce a ban on shackling, but much more needs to be done.

“The government of Ghana has a real opportunity to lead by example, sending a message to other countries in the region and globally that it will not tolerate the inhumane treatment of people with psychosocial disabilities,” said Julian Eaton, senior mental health advisor at CBM. “They represent some of the most marginalized and invisible in society and deserve the same dignity and respect as anyone else.”
 

 

 

Posted: January 1, 1970, 12:00 am

The Ghanaian government has made important steps to address shackling of people with mental health conditions, but much more needs to be done. It’s now been 5 years since the Mental Health Act was passed. It’s high time they invested in community-based mental health services. https://www.hrw.org/endshackling

Posted: January 1, 1970, 12:00 am

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In Ghana people with mental health conditions are often considered as being possessed by evil spirits or demons. Due to these beliefs and the lack of local mental health services, some families and communities resort to shackling the person in their homes or in prayer camps. In some camps, people are chained to trees, where they would bathe, defecate, urinate, eat, and sleep, some for years. The government has made important steps to address these abuses, but much more needs to be done. It’s now been 5 years since the Mental Health Act was passed. It’s high time they invested in community-based mental health services. https://www.hrw.org/endshackling

 

Posted: January 1, 1970, 12:00 am

School children waiting to board their school transportation.

© 2014 Elin Martinez/Human Rights Watch

The video is distressing: A 16-year-old girl with multiple disabilities cowering in her bus seat as she is struck repeatedly by her caregiver. Seconds later the driver appears and drags the girl violently off the bus, dumping her onto the street where she crumples to the ground. They then drive off, leaving her on her own.

The caregiver has been charged in connection with the incident in Johannesburg’s Soweto township and has been released on bail. The government of Gauteng province also intends to bring disciplinary measures against the driver. The mother of the girl is taking legal action against the caregiver.

Sadly, cases of abuse or neglect of children with disabilities are all too common. While most cases remain invisible, this one was caught on camera, and those responsible taken to court.

In a 2015 report, Human Rights Watch showed how discrimination, violence and abuse in some schools harms children with disabilities. Across the country, children with disabilities are often exposed to bullying, physical abuse, and derogatory language on buses, in taxis, and pick-up trucks.

We met many mothers of children with disabilities who worry daily about their children’s safety on the way to school and in their classrooms. In Johannesburg, the mother of a 12-year-old boy with autism told us she removed her son from his school after two serious incidents of violence by teachers. “One day, he came back home. He had damage to his head and scars on his back… The head teacher said one of the teachers was holding [him] down on the floor… [Then] I was told one of the teachers was holding and beating [him] with a stick. … [My son] didn’t want to go to school after that,” she told us. Her son had begun to experience regular epileptic fits after numerous incidents in the school.

Adequate and safe transportation is crucial in enabling children with disabilities to go to school. The government should protect the right to personal mobility of people with disabilities, and ensure transportation is safe and easily accessible to children with disabilities.

Children and parents in South Africa should not have to fear the school run.

Posted: January 1, 1970, 12:00 am

Protesters with ADAPT, a disabled people's rights organization, stage a demonstration at the gates of the White House in Washington, April 20, 2015.

© 2015 Reuters

A bill that would very deliberately undermine the protections afforded under the Americans With Disabilities Act (ADA) could come to a vote in the US House of Representatives soon.

The ADA requires owners of businesses open to the public – like restaurants, hospitals, and hotels – to make sure they were accessible for people with disabilities. If they fail to do so, a person with disabilities can enforce their rights either by taking the business to court, or by filing a complaint with the US Department of Justice. However, the dangerous ADA Education and Reform Act of 2017 (H.R. 620), which the House Judiciary Committee approved last week, would dramatically increase the burden on any person with a disability who seeks to vindicate their rights.

This is how the new bill would look: If someone in, say, a wheelchair comes to a movie theater without a ramp or elevator, they would be required to give the business owner a written notice. Then, the business owner would have two months to respond and another four months to take some steps to address the violation. Only then, half a year later, could the person whose rights are at stake try to force the business to comply with the ADA and be held accountable.

This new bill would incentivize businesses dragging their feet to comply with the ADA’s accessibility obligations. It would also act as a profound deterrent to people looking to enforce their rights under the ADA. Already under existing law, the onus is mostly on them to trigger enforcement and accountability. Under H.R. 620, that burden would be compounded by months of delay and new bureaucratic hurdles. Many people would likely give up rather than put themselves through all that – and perhaps that’s exactly the point.

The United States has the obligation to ensure businesses do not discriminate against people with disabilities. Yet H.R. 620 would actually create more obstacles for them to access justice. 

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

A two-and-a-half-year old born with intersex traits walks with her parents in their garden. The parents have decided to defer all medically unnecessary surgeries until their child can decide for herself.

© 2017 Human Rights Watch

Earlier this year, some leading specialist pediatricians told me that they routinely advise parents of infants to consider surgery on their baby’s sex organs to decrease suicide risk later in life. The claim is not based in medical data, and it’s unethical for a doctor to offer an understandably confused and concerned new parent irreversible and entirely non-urgent surgery to avert a hypothetical future harm.

So why is it happening?

I spent the past year interviewing intersex adults, parents of intersex kids, and doctors who specialize in treating them. Once called “hermaphrodites,” intersex people make up nearly 2 percent of the population—their chromosomes, gonads, and sex organs don’t match up with what we consider typically male or female. One of the reasons we hear so little about intersex people is that based on a now-invalidated medical theory popularized in the 1960s, doctors often perform surgery on them in infancy. They generally say the goal is to make it easier for kids to grow up “normal.” But as our recent report showed, the results are often catastrophic, the supposed benefits are largely unproven, and there are rarely urgent health considerations requiring immediate, irreversible intervention. One of the many risks of surgery is assigning the wrong gender.

“It is harmful to make sex assignments based on characteristics other than gender identity,” Dr. Deanna Adkins, the director of the Duke University Center for Child and Adolescent Gender Care testified in a North Carolina court: “[I]n cases where surgery was done prior to the ability of the child to understand and express their gender identity, there has been significant distress in these individuals.”

A groundswell is taking place right now to put an end to the risks Dr. Adkins points out.

My organization, Human Rights Watch, is joined by the United Nations, the World Health Organization, Amnesty International, every major LGBT legal organization in the US, three former US surgeons general, and all intersex-led organizations around the world in calling for an end to medically unnecessary non-consensual surgeries on intersex kids. The American Medical Association Board of Trustees this year recommended respect for intersex children’s rights to autonomy and informed consent.

But some physicians refuse to accept that the status quo is harmful.

Today, on Suicide Prevention Day, the interviews with the two doctors who advocated early surgery are ringing in my ears.

One pediatric urologist acknowledged that it was possible to raise a child as either gender without surgery. But, citing transgender suicide attempt rates, he said: that if he were to abstain from sex assignment surgery on intersex children, it would result in “97 percent of [his patients having] gender dysphoria.” He said this puts him in a difficult position. He explained: “That carries a 40 percent risk of suicide. Not thinking about suicide. Suicide. Actually doing it, or trying to do it. That is an astoundingly large number…So that's a hell of a burden.”

To suggest that sex assignment surgery on an intersex kid saves them from a future suicide attempt is not only intellectually dishonest, but it skirts the actual issue.

First, while the fear of harassment of their children is a legitimate and palpable experience for all parents, surgical operations on intersex children have never been demonstrated to prevent bullying. True, data show that transgender people in the US carry a 41 percent risk of a suicide attempt in their lifetime, compared with 4.6 percent of the overall US population. But the risk is driven by factors that include discrimination and harassment—and in some cases ill-treatment by doctors— not by whether their genitals match their gender identity.

Second, performing surgery on intersex kids does not ensure their genitals will match their identity. Studies have found rates of gender assignment rejection among intersex children ranging from 5 to 40 percent, depending on the condition. Contrary to that urologist’s assertion that leaving his intersex patients intact would cause gender dysphoria, irreversible surgery may leave them with bodies that don’t match their identities.

Third, children should have the right to negotiate these complex social dynamics for themselves as they grow, and decide when and whether to have surgery—instead of having these decisions forced upon them. A recent investigative report from the Dominican Republic, where most intersex kids are left intact, showed that social awareness, and parent and teacher response help mitigate bullying —as with any other kid.

It is indeed a hell of a burden—but not for the doctor.

Rather it’s a burden on the parents of intersex kids who told me they felt bullied by doctors into choosing these high-risk cosmetic surgeries. And it’s a burden for the kid who will grow up permanently physically scarred and thinking of their body as shameful, in need of “fixing” by a scalpel.

Intersex kids deserve better—especially from doctors who specialize in their care. And no parent should have to wonder if a pediatrician is telling the truth.

We need to outlaw these surgeries on kids too young to decide for themselves that they want them—except in instances of true, data-driven medical need—to protect children from harm that can endure for the rest of their lives. It would protect parents from the mendacious wordplay that continues in clinics today. And it would allow intersex kids to thrive and get support when they need it.

As a father of a two-year-old with an intersex condition told me: “The world can be a hard place for people who are different and I am not naive to the fact that this could create some social difficulties for my daughter.” He and his wife visited multiple specialists, many of whom threatened social outcomes based on hypothetical understandings of what it might be like to grow up with a body that’s a little different from most people’s. The father said: “I don't think the solution is to subject her to anesthesia and perform a surgery, without her consent, that's irreversible.”

Parents are looking for medical advice from providers charged with interpreting data and protecting life and limb. Certainly it’s not a burden for doctors to avoid frightening parents with incomplete and inaccurate information.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

One day in mid-July Alexander Kupriyanov, a psychiatrist from the Russian city of Briansk, opened his email to find several video clips, sent to him anonymously. The grainy videos, with time stamps ranging from May to June 2017, show several residents in the Trubchevsk Psycho-Neurological Institution near Briansk chained by their wrists or ankles to beds, radiators, and other objects. While Kupriyanov isn’t willing to publicly share who recorded the videos, he was immediately convinced they were authentic: he told me he’s been hearing stories about mistreatment at this institution for years. Kupriyanov published the videos on YouTube, which quickly got picked up by several media outlets.

Screenshot of a resident in the Trubchevsk psycho-neurological institution in the Briansk region chained to a metal frame.

© 2017 Private

The Russian government’s response was swift – although not quite what Kupriyanov had hoped for. Last week authorities opened a criminal case but, according to Kupriyanov, investigators so far have mostly focused on finding out who recorded the video.

After the video was published, several former staff came forward, including on national television, with revelations so disturbing that it is impossible to hear them without tears. Two former nurses confirmed the practice of chaining people with psychosocial disabilities to their beds or radiators, including those believed to be suicidal. One former kitchen worker recognized the patients in the video. She said that staff regularly brought some residents to the dining hall chained to each other, and forced them to eat in handcuffs.

Former employees also said that the institution is severely understaffed, with one nurse responsible for 30 or 40 people at a time. One former nurse said that when residents were “unruly” they would be chained, forcibly sedated, or put in solitary confinement. “Others are practically immobile and the staff don’t want visitors to see them crawling around the grounds,” she added.

Former staff say chains and handcuffs were mostly used in wing five of the facility which, in a cruel irony, is known as the “Mercy Wing.”

Shackling is prohibited under Russian and international law, and Human Rights Watch has called for an absolute ban on shackling and other forms of prolonged restraint. Authorities should properly investigate these damning allegations and make sure that people in such institutions around Russia are treated with the dignity they deserve. 

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

This memorandum, submitted to the United Nations Committee on the Rights of Persons with Disabilities (“the Committee”), ahead of its review on Russia, highlights areas of concern that Human Rights Watch hopes will inform the Committee’s consideration of the Russian government’s compliance with the Convention on the Rights of Persons with Disabilities (“CRPD”).  This submission draws primarily on Human Rights Watch’s research in Russia from 2013-2015 on the rights of people with disabilities and relates to Russia’s compliance with the CRPD, including articles 4, 5, 7, 8, 9, 11, 12, 13, 14, 15, 16, 18, 19, 20, 23, 24, 25, 26, 27, 28, 29 and 30.

I. Abuses against Children with Disabilities in State Institutions

Human Rights Watch conducted research from 2013-2014 in 10 state institutions for children with disabilities in 6 regions in Russia and conducted more than 200 interviews with parents, children, and young people who currently live or lived in these institutions, as well as interviews with orphanage staff who work or worked in these institutions and with local activists. The information in this section is based on material published in Human Rights Watch’s September 2014 report: Abandoned by State: Violence, Neglect and Isolation for Children with Disabilities in Russian Orphanages.[1]

Physical and Psychological Violence

Physical violence against children with disabilities in institutions documented by Human Rights Watch included beating; pouring cold water over children’s heads; use of physical restraints, including binding children to cribs or wheelchairs; the frequent use of sedatives to control or punish children rather than for therapeutic purposes; and forced psychiatric hospitalization as a form of punishment. Psychological violence included forced isolation; denial of contact with family members; death threats and threats of beating or psychiatric hospitalization; insults, such as calling children “vegetables”; humiliation; and lack of attention from caregivers.

Human Rights Watch documented the segregation of children whom staff deemed to have the most “severe” disabilities into so-called “lying-down” rooms where they are confined to cribs. Many of these children received little attention except for feeding and diaper changing. Many children in these settings are rarely if ever given the chance to leave their cribs, interact with other children, or go outside.

Denial of Family Contact

Staff in two institutions visited by Human Rights Watch reported that they discouraged visits by children’s parents and in some cases denied children contact with their families, claiming that children become “spoiled” after visits with families.

Neglect and Lack of Adequate Nutrition, Health Care, Education, and Play

In all 10 institutions that Human Rights Watch visited, we documented instances of neglect, poor nutrition, inadequate health care, lack of access to rehabilitation services, lack of access to education, and insufficient access to leisure and play activities. For example, Human Rights Watch found that some children did not have a varied diet, were fed by inappropriate methods, or lacked sufficient drinking water. Activists interviewed by Human Rights Watch reported that children in institutions lacked individualized attention or stable caregiver relationships.

Human Rights Watch found that many staff employed in institutions did not have appropriate professional training. None of the children or young people interviewed by Human Rights Watch had access to appropriate mechanisms to report abuse to independent authorities.

Human Rights Watch has determined that some cases of physical and psychological violence, described in the report, may rise to the level of torture, particularly given the combination of different types of physical and psychological violence used against children, use of physical and chemical restraints, and psychiatric hospitalization. Other forms of violence against children that may contribute to treatment rising to the level of torture include forced isolation from parents and families, as well as malnutrition and neglect. 

Pressure to Institutionalize Children

Human Rights Watch identified obstacles to raising children with disabilities in the community, including lack of community based services such as health care and rehabilitation services, lack of access to education and inadequate financial support. These obstacles may compel some parents to relinquish custody of their children at birth, or at older ages, to institutions. According to the international nongovernmental organization (NGO) Partnership for Every Child, over 95 percent of Russian children who live in orphanages or foster care have at least one living parent.  

Underdeveloped Alternatives to Institutionalization

On the basis of interviews with activists, foster care, and adoptive parents, Human Rights Watch determined that obstacles to securing alternatives to institutionalization for children with disabilities, include a lack of mechanisms to place children without parental care in families; lack of social support provided to foster and adoptive parents; and attempts by local-level officials to discourage families from becoming adoptive or foster parents.

Human Rights Watch encourages the Committee to ask the government of Russia:

  • What steps is the government taking to prioritize family based care and to develop a time-bound plan for deinstitutionalization, including: 1) moving children out of residential institutions and reuniting them with their birth families or placing them with adoptive or foster families and 2) ensuring available, accessible services in the community to support people with disabilities, including children with disabilities and facilitating their right to live in the community? How have persons with disabilities been involved in these measures?
  • What steps has the government taken to prioritize funding to community and support services for children with disabilities and their families above funding from institutions?
  • What specific steps is the government taking to stop instances of neglect, physical violence, psychological violence, and abuse in institutions for children with disabilities?
  • Do children with disabilities living in institutions have accessible complaint mechanisms to report their treatment? What are the mechanisms for children to file such complaints?
  • Under what circumstances can a child living in an institution be segregated and isolated from other children? What measures have been adopted to eliminate isolation of children on the basis of their disability and ensure that all children with disabilities living in state institutions are free from discrimination?

II. Lack of Accessibility

In 2012-2013, in 164 interviews, including with 123 people with disabilities in six cities throughout Russia, local NGOs, and representatives of organizations for people with disabilities, Human Rights Watch documented how the physical environment, public transportation, employment, and healthcare are not adequately accessible for persons with disabilities. The information in this section is based on material published in Human Rights Watch’s September 2013 report: Barriers Everywhere: Lack of Accessibility for People with Disabilities in Russia.[2]

Approximately 13 million people with disabilities live in Russia, representing 9 percent of the national population.[3] Russian law requires the physical environment to be accessible for people with disabilities.[4] However, lack of enforcement mechanisms described in the law mean regional and city governments may avoid implementing such accommodations where they are necessary. The lack of accessibility hinders access to private businesses, entertainment venues, educational facilities, etc. as well as to administrative buildings for activities such as voting, filling out benefits forms, and participating in public hearings.

Many people with physical disabilities interviewed by Human Rights Watch were, at the time of the interview, almost completely confined to their apartments and homes due to the lack of accessibility in their apartment buildings, as well as in the community, with obstacles such as narrow doorways, complete lack of ramps and elevators, or ramps that are too steep or otherwise not usable, and elevators that are too narrow, for example, for wheelchair users.  People with physical disabilities also reported that street crossings and underpasses are frequently inaccessible. In winter months, ice and snow become additional barriers and dangers.

Under Russian law, people with hearing disabilities are entitled to 40 hours per year of free, state-sponsored sign language translation services, but many interviewees reported that the 40 hours is insufficient. The government does provide free hearing aids, but users have found the state-provided aids to be poor quality, uncomfortable, and incapable of separating human voices from background noise. In some cases, individuals may obtain reimbursement for self-purchased hearing aids, but the reimbursement provided is several times less than the items’ actual cost.

People whom Human Rights Watch interviewed who had submitted official complaints to local officials about the lack of accessibility received inadequate responses or no response at all.

Barriers to Accessing Transportation

Public transportation is frequently inaccessible to people with disabilities. Though the number of buses with accessible wheelchair lifts has increased, their overall numbers are still limited, and infrequent or inconsistent bus schedules and overcrowding mean that most people with disabilities interviewed by Human Rights Watch reported that they use buses “as the last resort” despite limited alternatives. The metro systems, including in the major metropolises of Moscow and St. Petersburg, have limited access for people with physical disabilities. The Russian transportation system also overwhelmingly lacks visual and auditory signals necessary to accommodate individuals with vision or hearing disabilities. “Social taxis” in many cities are typically a more accessible option for people with disabilities; however, people with hearing disabilities cannot access this service independently because, at the time our report was published, reservations could only be made by phone.

Obstacles to Accessing Healthcare and Rehabilitation

People with disabilities interviewed by Human Rights Watch reported many barriers to healthcare and rehabilitation services: inaccessible clinics and diagnostic equipment; lack of available rehabilitation facilities in communities and trained personnel within those facilities; lack of information regarding available resources and services; lack of available resources to assist people with a hearing disability to make appointments or communicate with medical personnel; lack of respect on behalf of the healthcare workers to women with disabilities and their right to have a family. For example, Human Rights Watch documented how in some cases, upon finding out that a pregnant patient has a disability, doctors discouraged the patient from continuing with the pregnancy, pressuring the patient to terminate.

Obstacles to Accessing Employment

In Russia, unemployment disproportionately affects individuals with disabilities. According to Russian government officials, in 2012 only 20 percent of working-age adults with disabilities were employed. Employers regularly underpay, refuse to hire, harass, and fail to accommodate workers on the basis of their disabilities, without sanction. The majority of people interviewed by Human Rights Watch stated that they had been denied employment on at least one occasion due to their disability. For instance, Yuliana, a 28-year-old woman with low vision interviewed by Human Rights Watch in 2013, was rejected for multiple teaching jobs for which she was professionally qualified. Each time, prospective employers refused to implement her Individual Plan for Rehabilitation, the legally-binding document which specifies the accommodations to which she is entitled. No action was taken against the would-be employers.

Other people interviewed by Human Rights Watch reported being underpaid or not considered for promotion because of their disability. Limited access to education serves as one of the main barriers preventing people with disabilities from finding adequate employment (see below, regarding education). Public statements by some Russian officials have called for the creation of “special” jobs for people with disabilities rather than ensuring equal employment opportunities.  

Human Rights Watch encourages the Committee to ask the government of Russia:

  • What specific measures is the government taking to increase accessibility for people with different types of disabilities, including to government facilities as well as in housing, transportation, healthcare services, other buildings, and public spaces, to facilitate their right to live in the community and other rights? How does the government enforce accessibility requirements?
  • What measures does the government take to effectively respond to official complaints from people with disabilities regarding accessibility and other types of discrimination?

III. Obstacles to Education for Children with Disabilities

Human Rights Watch research in 2012-2015 found that children with disabilities in Russia face severe obstacles in accessing quality education. The information in this section is based on material published in Human Rights Watch’s September 2015 report: Left Out?: Obstacles to Education for People with Disabilities in Russia.[5] The report is based on over 200 interviews with children and adults with disabilities, their families, and children’s and disability rights activists, as well as visits to 10 state institutions where children with disabilities live.

We documented many barriers that prevent children with disabilities from studying in mainstream schools, including lack of ramps or lifts to help children enter and move within buildings, lack of accommodations for people with sensory disabilities, such as large-print textbooks for students with low vision, and a lack of teachers and other school personnel with training to provide for the diverse learning needs of students, including those with developmental disabilities. Additionally, infrastructure barriers and limited accessible transportation prevented some children from being able to leave their homes and reach school.

Russian law allows children with disabilities the choice to either study in a mainstream school, a specialized school for children with disabilities, or at home, through distance learning programs or visits from teachers. We found however that children with disabilities often attend specialized schools because mainstream schools do not have the reasonable accommodations that children need, so this decision is not the result of a meaningful choice.

Human Rights Watch found that some school administrators refuse to admit children with disabilities based on assumptions that they are unable to learn, are unsafe around other children, or engage in disruptive behavior. Many children with disabilities remain segregated in specialized schools, schools often located far from children’s homes, and that may offer limited academic programs. Other children with disabilities stay isolated in their homes, with visits from teachers a few times a week and limited interaction with peers.

Parents also told Human Rights Watch that officials evaluating their children’s disability frequently recommended a specialized school. Although these recommendations are not legally binding, parents often did not receive sufficient information on the rights to inclusive education and sometimes understood the recommendations of school officials to be compulsory.

The tens of thousands of children with disabilities living in state orphanages often receive poor quality or little education, and many receive no education at all.

Serious obstacles also exist for older children and young adults to access vocational training and higher education. Because many children and young adults with disabilities have not received quality education, as adults, they frequently struggle to enroll in universities or gain meaningful professional skills necessary to secure employment.

Human Rights Watch encourages the Committee to ask the government of Russia:

  • What specific steps is the government taking to guarantee access to a quality, inclusive education for all children with disabilities, including children with intellectual disabilities, children living in state institutions, and children in special schools who may be there due to the lack of access to mainstream schools?
  • What steps is the government taking to achieve maximum inclusion in mainstream schools and avoid exclusion, including the segregation of children with disabilities in separate classrooms, with respect to revised federal curricular standards that went into effect in 2016?
  • What steps has the government taken to ensure reasonable accommodations are in place to allow people with disabilities to enjoy their right to education?
  • What is the government doing to ensure that core teacher training for all current and student teachers includes inclusive education and practical skills for teaching children with disabilities?

 

 

[1] Human Rights Watch, Abandoned by State: Violence, Neglect and Isolation for Children with Disabilities in Russian Orphanages, September 2014, https://www.hrw.org/report/2014/09/15/abandoned-state/violence-neglect-a...

[2] Human Rights Watch, Barriers Everywhere: Lack of Accessibility for People with Disabilities in Russia, September 2013, https://www.hrw.org/report/2013/09/11/barriers-everywhere/lack-accessibi...

[3] “State program of the Russian Federation ‘Accessible Environment’ for the years 2011-2015 [Государственная программа Российской Федерации «Доступная Среда» на 2011-2015 годы], Federal Government Statistical Service, March 17, 2011, http://fcp.economy.gov.ru/cgi-bin/cis/fcp.cgi/Fcp/ViewFcp/View/2015/392 (first accessed May 15, 2013).

[4] Russian Federal Law “On the Social Protection of the Disabled”

[5] Human Rights Watch, Left Out?: Obstacles to Education for People with Disabilities in Russia, September 2015, https://www.hrw.org/report/2015/09/01/left-out/obstacles-education-peopl...

Posted: January 1, 1970, 12:00 am

A poster by intersex activist Pidgeon Pagonis

© 2017 Human Rights Watch

For decades, parents of intersex babies – children whose sex characteristics aren’t quite typical male or typical female – have been pressured into consenting to medically unnecessary and irreversible surgery to make their children appear ‘normal.’ But these surgeries leave physical, emotional, and psychological scars, Human Rights Watch says in a new report. Philippa Stewart speaks to Kimberly Zieselman, the executive director of intersex advocacy group interACT, about this damaging surgery and what needs to be done to protect intersex children.

What are some of the misconceptions around being born intersex?

Unfortunately, in our society we’re still at a point where most people don’t know the basic facts about being intersex. People think it is very rare, but really, up to two percent of the population are born with intersex traits. And there are well over 30 to 40 intersex variations, which is something a lot of people don’t realize.

What do people who are intersex deal with because of this lack of understanding?

People are told not to discuss being intersex. That makes intersex children feel almost freakish, and this feeling is carried into adulthood.

Even with the best interests of the child in mind, parents and doctors will often relay the message to children that they are wrong and different and something to be fixed. Often that fix includes irreversible medical intervention really early in life, including surgery. This attitude creates a feeling of stigma and shame and affects people deeply. We see physical harm from the surgery, but also psychological harm because of the intervention. The fact that you’re told by society that you don’t belong and that you’re a mistake or your body is a mistake – most intersex people really struggle with this their whole lives.

What is your group calling for?

What we want is a moratorium on surgery if the person is too young to understand and to consent.

So, we want doctors to shift their attention away from “fixing” babies and young children and instead focus on adolescents, young adults, and adults who may have decided for themselves they want surgery – that is where the help is needed. We just want the focus to be shifted to consenting adults.

What do some doctors tell parents when they are trying to make these decisions?

One thing I’ll never forget is a parent who told me that, when they were asking questions and were confused about why the surgery had to happen right away, the doctor got frustrated and said, “Well if you don’t do this surgery, frankly it’s akin to child abuse.” That’s probably the worst thing I’ve heard. More often, it is a tone or an attitude that the doctors send out in the way they talk to parents – that suggests the same thing.

There’s an established power dynamic between doctors and patients. In these situations, with your children involved, you go in to a bit of a panic mode and you are relying on this doctor to tell you how to help your child.

What needs to change in this process to help parents?

Doctors need to frame it in a different way, so parents know there is no urgency. Parents should also be given the full spectrum of choices, including waiting for a period of time, talking to other parents who have gone through this with their children, or connecting with adults who have the same intersex traits as the baby. Then, they can gather information for themselves to help them help their child make a decision.

Doctors in the United States continue to perform medically unnecessary surgeries that can inflict permanent harm on intersex children. 

What’s happening in too many cases is that doctors are telling parents, “Well it is really better to do this kind of surgery when they are young because they won’t remember it, there will be less trauma, and they won’t have any time that they’ll remember when their body looked different so they won’t be made fun of or discriminated against by their peers.” These aren’t medical reasons, they are all sociological, they start creating a “social emergency” and it scares the parents. These fears also aren’t grounded in any kind of data – they’re just hypotheses.

But it isn’t a medical emergency or a social emergency. It is just a child with a different type of body.

Also, parents should know that some of these surgeries are deemed akin to torture by United Nations rights experts when done without informed consent.

This all must have an impact on how intersex people view doctors.

Absolutely. For those who have had surgery and maybe now need doctors for hormone replacement therapy – which you need for the rest of your life after having had healthy gonads removed – there is a reliance on the medical community. You need to access doctors to stay healthy, but for lots of intersex people that is very difficult.

A lot of intersex people who have been lied to as children and had surgeries done to them without their consent develop a mistrust of doctors. I’ve heard intersex people say they are avoiding the doctor because they just can’t cope with the stress of it.

The intersex community is not saying doctors are bad. What we need are doctors we can fully trust and who will explain things so we can understand and consent to procedures.

We need the doctors who don’t do this to tell the rest of their profession that these surgeries shouldn’t be done.

We shouldn’t be taking away a child’s bodily autonomy just because they don’t fit into our idea of normal.

Do intersex adults sometimes not know what surgery they underwent as children?

In the past decade that has been less common.

That said, there’s so many of us walking around who were lied to, or were not told for a really long time, or found out accidentally. This was the case of many of us in my generation. My story is that I didn’t find out until nine years ago, when I was 41. I knew I’d had surgery. I signed a form when I was 15, along with my dad, but we didn’t know what it was for. We thought it was a hysterectomy and cancerous ovaries being removed. That is a pretty common story for people around my age and a little bit younger – that intersex people get their medical records and realize they were lied to, often by their parents as well as the medical community.

What have people told you about the effects of these surgeries?

It does sound dramatic, but it is quite common, especially for people who have had medical intervention, to experience PTSD as a result.

There are also more subtle things like having a pattern of disassociation in your life, difficulties in relationships, particularly with sexual intimacy and trust. There is also the physical scarring and nerve damage that leads to loss of sensation.

This story has just stuck with me. It was a young person who is now in her 20s. When she was 18 months old, her parents took her to the doctor and it was determined her vagina was too small. The recommendation was a surgery to create a vagina.

A father plays with his daughter, who was born with atypical sex characteristics. Despite pressure from doctors, the parents chose not to elect medically unnecessary surgeries on their child. 

© 2017 Human Rights Watch

The parents took the surgeon’s advice but then were surprised to learn only after the surgery was completed that they would be required to dilate their child’s vagina regularly afterward. What happened was that the parents would dilate the child, with all good intentions, but they would physically hold her down. You can just imagine the trauma from that. One of the results was this child became anorexic – it was about gaining control over her body.

Happily, recently she’s been doing great and is starting to move past the trauma and speak out about it as an advocate, and her mom has been very supportive.

There’s a lot to say about parents accepting and being comfortable with their child’s non-binary body.

What do you think is the key to acceptance for intersex people?

The LGBT community was the first to embrace intersex issues, and it is opening a lot of doors for us, but this is truly a broader issue. We’d like people to understand that really at its core this is a children’s rights issue. It is also about health and reproductive rights, because these operations can lead to infertility.

We’re doing so much to connect and empower intersex people in their teens and 20s. Even though intersex isn’t a sexual orientation or a gender identity, we have many similarities – like discrimination based on sex and bodies – with the LGBT movement, and that movement has really paved the way for acceptance. There’s a long way to go, but it really has made a difference to young people and how accepting they are. It gives me a lot of hope.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

Doctors in the United States continue to perform medically unnecessary surgeries that can inflict permanent harm on intersex children. 

(Chicago, July 25, 2017) – Doctors in the United States continue to perform medically unnecessary surgeries that can inflict permanent harm on intersex children, Human Rights Watch and interACT said in a report released today. Despite decades of controversy over the procedures, doctors operate on children’s gonads, internal sex organs, and genitals when they are too young to participate in the decision, even though the surgeries could be safely deferred.

The 160-page report, “‘I Want to Be Like Nature Made Me’: Medically Unnecessary Surgeries on Intersex Children in the US,” examines the physical and psychological damage caused by medically unnecessary surgery on intersex people, who are born with chromosomes, gonads, sex organs, or genitalia that differ from those seen as socially typical for boys and girls. The report examines the controversy over the operations inside the medical community, and the pressure on parents to opt for surgery.

Once called “hermaphrodites” (a term now considered pejorative and outdated), intersex people are not rare, but they are widely misunderstood. Based on a medical theory popularized in the 1960s, doctors perform surgery on intersex children – often in infancy – with the stated aim of making it easier for them to grow up “normal.” The results are often catastrophic, the supposed benefits are largely unproven, and there are rarely urgent health considerations requiring immediate, irreversible intervention.

“The devastation caused by medically unnecessary surgery on intersex infants is both physical and psychological,” said Kimberly Zieselman, an intersex woman and executive director of interACT. “Despite decades of patient advocates putting the medical community on notice about the harm from these procedures, many doctors continue to present these surgeries to parents as good options.” 

As many as 1.7 percent of babies are different from what is typically called a boy or a girl. The chromosomes, gonads, internal, or external sex organs of these children differ from social expectations. Some intersex traits – such as atypical external genitalia – are apparent at birth. Others – such as gonads or chromosomes that do not match the expectations of the assigned sex – may manifest later in life, in some cases around puberty. A child can be raised as either sex without surgery. On the other hand, genital or gonadal surgeries on intersex children too young to declare their gender identity carry the risk of surgically assigning the wrong sex.

Surgery to remove gonads can amount to sterilization without the patient’s consent, and then require lifelong hormone replacement therapy. Operations to alter the size or appearance of children’s genitals risk incontinence, scarring, lack of sensation, and psychological trauma. The procedures are irreversible, nerves that are severed cannot regrow, and scar tissue can limit options for future surgery.

Medical protocols have evolved – in particular with an increasingly common use of multi-disciplinary teams that work on cases of “Differences of Sex Development.” Most medical practitioners now acknowledge that parents may prefer to leave their child’s body intact. A doctor who works on such a team told Human Rights Watch: “We’re listening to the adult patients who are telling us that they feel they were mistreated and mutilated and that’s a very powerful thing.”

However, the field remains fraught with uneven, inadequate, and piecemeal standards of care – and broad disagreements among practitioners over how best to respect and protect the rights of their intersex patients. While certain surgical interventions on intersex children are undisputedly medically necessary, some surgeons in the US perform risky and medically unnecessary cosmetic surgeries on intersex children, often before they are even able to talk.

“The medical community has made progress in intersex care in recent decades, but medically unnecessary irreversible surgeries on children and infants remain common,” said Kyle Knight, researcher at Human Rights Watch and author of the report. “The pressure to fit in and live a ‘normal’ life is real, but there is no evidence that surgery delivers on the promise of making that easier, and ample evidence that it risks causing irreversible lifelong harm.”

United Nations human rights bodies have increasingly condemned countries around the world in recent years for failing to ban medically unnecessary surgery on intersex children. In a 2013 report, the United Nations special rapporteur on torture noted that, “Children who are born with atypical sex characteristics are often subject to irreversible sex assignment, involuntary sterilization, involuntary genital normalizing surgery … leaving them with permanent, irreversible infertility and causing severe mental suffering.”

In July 2017, three former US surgeons general wrote that they believed “there is insufficient evidence that growing up with atypical genitalia leads to psychosocial distress,” and “while there is little evidence that cosmetic infant genitoplasty is necessary to reduce psychological damage, evidence does show that the surgery itself can cause severe and irreversible physical harm and emotional distress.”

The report is based on in-depth interviews conducted by Human Rights Watch researcher Kyle Knight and Dr. Suegee Tamar-Mattis, a physician and Human Rights Watch research consultant, with 30 intersex adults, 2 intersex children, 17 parents of intersex children, and 21 healthcare practitioners including gynecologists, endocrinologists, urologists, psychologists, and other mental health providers who work with intersex people. The report also contains an extensive literature review, and features the available data on surgeries.

Several doctors told Human Rights Watch that while they were increasingly uncomfortable advising parents to choose these surgeries, the operations are still taking place in their clinics. Parents said they still feel pressure from doctors to elect these surgeries.

“The pediatricians are in a position of power. And if it’s an issue of parents being scared, that is the problem that has to get solved. It’s not really a matter of if you do surgery – that doesn’t make any sense, that’s not solving anything,” an endocrinologist and medical professor told Human Rights Watch. “When we’re trying to force people into cultural normative, hetero-normative situations, there’s a high chance that we’re going to make some major mistakes and harm people irreparably,” said a gynecologist on a team for “differences in sex development.”

Parents of an 8-year-old born with atypical genitals said: “The doctors told us it was important to have the surgery right away because it would be traumatic for our child to grow up looking different. What’s more traumatic? This sort of operation or growing up a little different?”

These and other parents told Human Rights Watch that the most helpful resource in raising their intersex children was meeting other parents and intersex adults through support groups.

The experience of those who have undergone the surgery, along with principles of medical ethics, suggest that unless and until there is outcome data establishing that the medical benefits of specific surgical procedures on infants and young children outweigh the potential harm, they should not be used, interACT and Human Rights Watch said. At present and despite several decades’ worth of surgeries, that evidence simply doesn’t exist.

The US government and medical bodies should put an end to all surgical procedures that seek to alter the gonads, genitals, or internal sex organs of children with atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred, Human Rights Watch and interACT said.

“Parents of intersex children are often scared and confused about how best to protect their children from stigma,” Zieselman said. “It’s such a relief for them when they meet others who have the same intersex traits as their children and see that they have grown up healthy and happy.”

Posted: January 1, 1970, 12:00 am