As with so many other professions, nursing remains a neglected line of work, despite its practitioners being responsible for the treatment, safety and quick recovery of patients, as well as post-op management and specialised interventions. Doctors need them because no doctor can care for each patient.

Rukhsana Shah

They have long working hours and low wages. Their career trajectories are poor as they are inducted in Grade 16 after BSc in nursing, with prospects of promotions and perks like their officers in the public sector with similar qualifications. Many nurses are qualified from abroad but are not integrated at policymaking levels.

Nurses in Pakistan work in a highly misogynist culture.

In the private sector, nurses are paid between Rs12,000 to Rs20,000 per month with frequent double shifts due to shortage of staff. The quality of their qualifications varies as some nursing teaching institutions exist only on paper, while many others lack basic infrastructure. There is poor monitoring of benchmarks and discipline as the Pakistan Nursing Council is often hampered by the health bureaucracy and even by executive district officers who interfere in nursing recruitment, training, inspection and examination. Even transfers and postings of nurses are not controlled by directors generals of nursing in the provinces.

According to an Aga Khan University study, there is a highly skewed physician-centred culture in Pakistan with most nurses not being recognised as medical professionals in their own right. “The low socioeconomic status of nurses, unsafe work environment, lack of respect from doctors, and the very nature of nurses’ work create a dichotomy in society’s attitude towards the nursing profession.” It was noted that nursing shortage and the image of the profession had a reciprocal relationship: while most people appreciated the critical role of nursing in healthcare, very few considered it a suitable profession for their daughters or sisters, and even television portrayed nurses as handmaidens of doctors.

This is in complete contrast with the more feasible and affordable nurse-centred culture in developed countries, where public health is embedded in the nursing profession to reduce healthcare costs. Nurses work in a variety of settings in primary, secondary, community and social care services in hospitals, health centres, hospices and teaching institutions. They serve local communities in emergencies, work as midwives, nurse the sick and old, and also cater to persons with disabilities and mental illnesses. In the UK, despite NHS budget cuts, there are 300,000 nurses, while in the US, the ratio is one doctor to four nurses.

In India, high-powered institutional mechanisms such as the Bhore and Kartar Singh Committees have brought about major changes in the nursing culture, improving their working hours and recommending a minimum of Rs20,000 per month as starting salary. From 2000 to 2016, BSc colleges increased from 30 to 1,752 and MSc colleges from 10 to 611 in India. There are also eight institutions offering PhD programmes in nursing. Florence Nightingale Awards including medals and cash are given every year on International Nursing Day to 35 nurses for outstanding services.

In Pakistan, neither the legislators nor health professionals have effectively addressed the problems faced by nurses in the country. According to a Pakistan Medical Association office-bearer, it is an emergency situation and a special commission has to be put in place to review the entire system of nursing and align it with the requirements of not only the SDGs but the entire public health system. The number of nursing teaching colleges needs to be increased manifold and PhD programmes introduced. In order to improve the dismal doctor to nurse ratio, the government must take affirmative action to support nurses with higher salaries, a proper service structure and improve their image by publicly acknowledging through the media their services as a critical component of healthcare.

It is imperative that the bureaucracy of the health sector provide respect and space to the Pakistan Nursing Council to fulfil its mandate of training, inspection and protection of nurses without interference, providing modernised curricula, and ensuring access to foreign trainings which are usually used up by bureaucrats based in Islamabad. Other bodies such as the Pakistan Nursing Federation and Pakistan Nursing Association should also play their due role in empowering nurses, providing leisure facilities and encouraging the use of social media such as Twitter and WhatsApp to communicate with patients.

The writer is former federal secretary.

This story was originally published by Dawn, Pakistan

The Mendez Report compiled by UN special rapporteur on torture in 2015 indicates there are at least eight to 10 million children living in orphanages, residential homes, psychiatric hospitals and other institutions around the world who need to be protected against torture and ill treatment.

Rukhsana Shah

In recent years, much information on the plight of children in these institutions has emerged. Human Rights Watch reported physical beating, tying children to cribs or wheelchairs, verbal abuse and humiliation at state institutions for children with disabilities in Russia, sexual violence against girls in India, shackling of children in Ghana, inappropriate use of psychotropic medications in Serbia, and use of electroconvulsive therapy without anaesthesia in Indonesia.

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Disturbing reports have emerged of children in institutions.

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In the US at the Judge Rotenberg Centre, Massachusetts, children with autism are still meted out barbaric treatments of electric shocks and other ‘aversives’ for behaviour modification, such as pinching, spatula spanking, forced inhalation of ammonia and chemical and mechanical restraints, enumerated in a report presented in 2010 to the special rapporteur on torture.

Institutions are often overcrowded, with regimentation, fixed timetables, lack of stimulation and neglect. According to Disability Rights International (DRI), “Children with disabilities around the world are locked away in institutions and forgotten — many from birth … We have seen children left permanently tied into cribs and beds where many die. Some die from intentional lack of medical care as their lives are not deemed worthy”. It found autistic children locked in cages in Paraguay and Uruguay, child trafficking, forced labour and sex slavery in Mexico, and starvation in Romania. In other places, children had developed muscular atrophy because of being tied to their beds, while food deprivation was common.

Even more harmful is the impact of institutionalisation on the emotional and physical health of children. DRI reported that separation from families and the larger community affects brain development and cognitive function, leading to a higher prevalence of mental and behavioural problems. Lack of human affection and attachment causes irreversible psychological and emotional damage, including severe developmental delays, depression, and increased rates of suicide and criminal activity.

“In almost all institutions with children, we find them rocking back and forth, chewing their fingers or hands or gouging at their eyes or hitting themselves — a reaction to total sensory deprivation and a lack of human love or contact.” The death rate of institutionalised children with disabilities is far higher than the rate among other children.

In developing countries, poverty, ill health and disability are the primary reasons for placement of children in institutions, followed by abuse and abandonment. A Delhi shelter home has thrice the number of children than its capacity; even the caretakers admit that once children are brought in, they quickly lose their social and learning skills.

In Lahore, the Chaman Centre for Mentally Challenged Children has 22 children, ages seven to 14, with just two supervisors whereas there should be at least five qualified caretakers at all times. There is not a single psychologist, therapist or educationist, no CCTV cameras, and no manuals or guidelines for the employees. There are many such institutions in Pakistan where physical and sexual abuse, exploitation and other offences are rampant because of weak oversight by senior administrators and government functionaries.

The Mendez Report posits a much-needed examination of national and international laws and practices for children’s protection. It emphasises that institutions are inherently dangerous where children with disabilities are especially liable to be tortured. Unicef and WHO have also called for an end to institutionalisation and a moratorium on fresh placements so that governments can initiate the process of de-institutionalisation through legislation, legal aid, family support, community integration and inclusion.

It has become a serious human rights issue, not only because the conventions on child rights and rights of persons with disabilities clearly mandate that children should live with their families or in home-like environments within the community, but also because these findings have a direct bearing on implementation of the convention against torture in Pakistan. The government and the National Commission for Human Rights must introduce wide-ranging reforms relating to these conventions to improve child care in the country.

The writer is a former federal secretary.
rukhsana.hassan@gmail.com

This story was originally published by Dawn, Pakistan

April is the cruellest month of the year, wrote T.S. Eliot. It is a month of painful rebirth, but also a time of immense possibilities, when each being has the chance to blossom. It is thus very aptly the month that hosts World Autism Awareness Day today, April 2.

Rukhsana Shah

And particularly in smaller cities and towns, doctors often can`t diagnose autism, let alone advise parents, as it barely factors in their medical education and very few universities concentrate on the subject.

Since the incidence of autism is growing at a phenomenal rate at home and abroad, the existing structures of knowledge -including medical curricula need to be revised to include a thorough understanding of specific developmental disorders. Help, care and research centres for autism should be set up at all institutions where psychology, developmental paediatrics and neurology are being taught, while public and private schools must set up resource rooms and train teachers to enable these children to attend mainstream schools.

Second, autism is still not officially recognisedinPakistan. Even the National Institute of SpecialEducation`s signboardinIslamabad continues to read as the centre for `mentally retarded` children. This is despite the fact that the Capital Administration and Development Division minister inaugurated a seminar on autism awareness last year, while in 2014 the day was commemorated at President House. Many eminent persons, including the chief ministers of Punjab and Sindh, have children or grandchildren with autism, so why aren`t things changing? Not only must all disability laws be amended to include autism and other developmental disabilities, the federal government must also legislate for inclusive education as mandated by the UN Convention on the Rights of Persons with Disabilities that was ratified by Pakistan in 2011.

Third, there is no autism prevalence data availableinPakistan. In the1998nationalcensus, only 2.4 per cent disability was reported,while the worldwide figure according to the UN is 15pc. Only four categories of disability are identified and reported blind, deaf, physical disabilities and `mental retardation` and that term does not differentiate between the various intellectual and learning disabilities. So there is no data on the burgeoning number of people with autism and related disorders, with the result that teachers and caregivers are not properly trained to deal with them, closing the doors on their education and rehabilitation forever.

With a new census under way, it is imperative that the government collects relevant information on all types of disabilities among the population, as well as disaggregated data since most girls and women with disabilities remain unreported. The government should use state-of-the-art technology for enumeration and tabulation of data, including aerial photography, GPS and digitisation tools.

Fourth, budgetary allocations for education, access, rehabilitation and employment of persons with disabilities are abysmally low in all the provinces. Only 1pc of children with disabilities are able to attend any kind ofschool (less in higher education), while children and adults with autism have no future in the existing scenario.

So far, the only schools for autism have been estab-lished by parents themselves, with limited financial and human resources, while some `professionals` have set up `therapy` centres exploiting desperate parents by charging exorbitantly for dubious `treatments`.

The provincial governments must set up autism centres for early intervention, education, management and therapy in the absence of inclusive education systems.

Separate funds must be allocated not only for infrastructure, but also for continuous capacity building and training. The existing network of doctors, psychologists, nurses, Lady Health Workers, school health and nutrition supervisors, government schools, union councils and community-based organisations must be utilised to create such f acilities in at least all major cities. And finally, residential homes and community centres must be established for adults with autism with help from the corporate sector to inculcate independent living, provide vocational training (including cooking and computer skills), and provide sheltered and assisted employment.

The writer is a former federal secretary.
rukhsana.hassan@gmail.com

This story was originally published by Dawn, Pakistan

The current debate on the re-emergence of eugenics is worrying, as most of its proponents seem to be urging for gene manipulation for higher intelligence and beauty, while only a few are concerned with its dystopian implications.

The writer is a former federal secretary.

Thus, disability has always been seen as an aberration of the natural order of things. With the advent of religion, local communities and religious institutions looked after lepers and people with physical and intellectual disabilities. In the 17th and 18th centuries, lazar and leper houses, infirmaries, hospitals, charities and retreats were built for people with disabilities, but these institutions could not change attitudes towards them.

In the 19th century, Darwin published his Origin of the Species, which led Sir Francis Galton to revive the theory of eugenics in 1865 on the basis that the theory of natural selection and survival of the fittest precluded care for the disabled. Social Darwinists believed that ‘unfit’ people should be wiped out to make way for evolution of superior human beings. This led to the enactment of the first disability policy in the US in 1883, preventing people with disabilities from marrying and procreating, and introducing enforced sterilisation.

Disability has always been seen as an aberration.

Eugenics was supported by Charles Davenport, the Carnegie Institute, presidents of Harvard and Stanford Universities, and the Wharton School to restrict immigration of non-Nordic races into the US. In Japan, the National Eugenic Law was promulgated in 1940 under which sterilisation could be carried out on criminals, albinos, epileptics and patients with mental illnesses.

In its heyday in Britain, eugenics attracted eminent people like Julian Huxley, G.B. Shaw, Stephen Webb H.G. Wells, John Maynard Keynes, Havelock Ellis, Bertrand Russell, Winston Churchill and even William Beveridge, the founder of the welfare state in England. It also enabled the enactment in England of the 1913 Mental Deficiency Act, which allowed segregation of the ‘feeble minded’ and their selective sterilisation.

In Nazi Germany, under the principle of ‘racial hygiene’, experimentation was carried out on living human beings and ‘human material’ was gathered from the notorious Auschwitz camp. In 1939, the programme was initially aimed at children under three with disabilities and people with psychiatric conditions in state-run hospitals and institutions. However, forced sterilisation was carried out on around 400,000 people, and between 100,000 to 200,000 institutionalised persons with disabilities were killed through euthanasia, lethal injections and gas.

It was only after the Second World War and in reaction to these heinous crimes that eugenics became unpopular. It was replaced by social biology, followed by anthropology, biology and biogenetics. In the meantime, many countries including the US, UK, Canada, Switzerland and Sweden continued to sterilise ‘unfit’ people until the 1970s. Even today, people with disabilities continue to face systemic and systematic apartheid despite many UN resolutions and conventions on medical ethics and the rights of persons with disabilities.

Today, the debate is whether to restrict genetic engineering to reduce the incidence of disability or whet¬her this kind of med¬dling will open up a Pandora’s box of moral and practical issues. While embryo selection may make people more resistant to disease, it will also inevitably lead to the misuse of technology, for instance, sex selection, or increasing IQ levels of certain populations for political reasons.

It is also argued that the future of human and other species may become unpredictable as a result of precipitate scientific interventions as has happened in the case of nuclear science, global warming and environmental degradation.

However, screening policies for couples in Cyprus have helped to reduce the ratio of children born with thalassaemia to almost zero, while in Israel, genetic tests have helped to control hereditary diseases such as Tay-Sachs. DNA mutations can be reduced through bio and stem cell technology to prevent seizures, strokes, visual and hearing impairments, and other serious conditions.

With these scientific breakthroughs, the anti-eugenics movement propounding human diversity has little support from parents of children with disabilities in poor countries where less than one per cent of persons with disabilities are able to live in dignity or achieve their potential. If medical science is about stopping nature from destroying the body and mind, the restricted use of eugenics can perhaps help to at least reduce the incidence of disabilities in the future.

The writer is a former federal secretary.rukhsana.hassan@gmail.com

This story was originally published by Dawn, Pakistan

Women with disabilities face triple discrimination the world over on the basis of disability, gender and poverty. They are the most marginalised of all population groups including men with disabilities. The negative stereotyping of women with disabilities puts them at greater physical risk as they are exposed to neglect, emotional abuse, domestic violence and rape.

The writer is a former federal secretary.

The 2011 World Report on Disability indicates that the global female disability prevalence rate is higher at 19.2pc against 12pc for men because women are discriminated against since birth in terms of nutrition, immunisation and medical interventions. The global literacy rate for women with disabilities is 1pc with only 20pc of them getting any rehabilitation services. They are paid less than their male counterparts at work, given fewer loans for education or self-employment, and face stronger barriers in accessing vocational training, leisure facilities and justice.

With these global givens, it is not surprising that in Pakistan where being female itself is debilitating, women with disabilities live at the very peripheries of society, differentiated and unequalised by a culture that is patriarchal, religiously obscurantist and anti-women. The family, community, institutions and the state — the touchstones of human civilisation — are arrayed against them. Seventy per cent live in rural areas in the most appalling conditions where even provision of rehab services and assistive devices is discriminatory, making everyday living a challenge in itself.

Disabled women languish in the darkest corners.

Disability should not be a stigma, but accepted as a natural human condition by all the protagonists — people with disabilities, families, communities, civil society and the government. Last year, Madeline Stuart became the world’s first model with Down’s syndrome to appear on the catwalk at the New York Fashion Week. Television channels and social media networks should use social marketing to influence social behaviours and raise awareness about disability in collaboration with educational institutions, while women’s groups should initiate membership drives focusing on women with disabilities in order to empower them.

A great deal of work has been done at the international level under the aegis of the UN to create a comprehensive legislative and policy framework for a rights-based and barrier-free inclusive society.

Apart from the UN Convention on the Rights of Persons with Disabilities, ESCAP has taken a number of initiatives, among which are the Biwako Millennium Framework for Action and Biwako Plus Five, the Bali Declaration adopted by Asean, the Busan Partnership for Effective Development Cooperation, the Beijing Declaration on Disability-Inclusive Development, and the Incheon Strategy, to accelerate action during the current Decade of Persons with Disabilities, 2013–2022.

The Incheon Strategy also mandates member states to report triennially on the progress made on its time-bound and measurable goals.

Despite these international commitments and provisions in Articles 25, 37 and 38 of the Constitution, women with disabilities continue to languish in the darkest spaces in Pakistan, uncounted and uncared for. It is imperative for the government to take visible and affirmative action to ensure that its image at least in the international community is not further tarnished due to inaction on this front. A high-profile policy dialogue with organisations representing people with disabilities should be arranged to discuss legislative and implementation mechanisms in line with UN conventions and the Incheon strategy, along with the formation of a specific parlia¬mentary body to carry out this task.

There is no data on persons with disabilities in Pakistan as no serious at¬¬tempt has been made since 1998 to conduct a census to assess their numbers. The government needs to initiate compilation of gender-disaggregated disability data, include the disability dimension in all policymaking and budgeting exercises, and encourage the private sector to promote disability-inclusive business practices.

It is not rocket science to advise public-sector banks to float disability-friendly loans, fix job quotas for women with disabilities, subsidise the use of new technologies, introduce tax rebates for their families as is being done in India, and make BISP conditional upon the safety, education and vocational training of the disabled. Instead of signal-free roads, the government should set up fully equipped community resource centres to provide them opportunities for mobility, training and leisure time.

However, at present, all federal government structures relating to these critical constitutional and human rights issues stand disempowered after the 18th Amendment. If the government wishes not to remain within the confines of Islamabad, it will need to reclaim its lost spaces by acknowledging its responsibilities towards this most marginalised of communities groups in the country.

The writer is a former federal secretary. rukhsana.hassan@gmail.com

This story was originally published by Dawn, Pakistan, June 12th, 2016