Disability policy Research Papers - Academia.edu (original) (raw)

Rahnuma Family Planning Association of Pakistan (R-FPAP) engaged the Institute of Social Sciences (ISS) to conduct a research study to identify different kinds of sources of SRH information available to PWDs (Persons With Disabilities), identify assistance required and services available to and attained by PWDs to fulfil their SRH needs, and document perceptions, practices and attitudes of service providers, parents or immediate care takers and PWDs themselves, which make them more vulnerable for access to SRH information and services.

The study involved in-depth interviews and focus group discussions with a wide range of stakeholders involved with the rehabilitation and welfare of PWDs, including PWDs themselves, their parents, staff of institutions involved in the education and care of PWDs, SRH and public health experts, physicians, government officials, and disability experts and advocates, assessment of the existing attitudes of service providers regarding PWDs using an attitude scale, and semi-structured interviews of 104 PWDs. A Reference Group consisting of key stakeholders reviewed and made inputs into the research design and instruments, as well as the study report, and participated in the dissemination meeting of the report. The key findings of the study are summarized below.

There is a huge gap between the needs of PWDs for SRH information, counselling and services and the availability of the same to PWDs, both in mainstream institutions like hospitals, as well as institutions dedicated to PWDs. The study identified many myths, misconceptions and unscientific thinking regarding SRH, disability and PWDs (e.g. many PWDs attributed the infertility of a couple, the birth of a disabled child, the determination of the sex of a child, or a person becoming disabled due to God’s will), and most PWDs and their teachers declared masturbation sinful and harmful to health. However, about one-fourth of PWDs, mostly young, provided scientific explanations for most of these SRH myths.

Many staff members of special education had stereotypes of PWDs (e.g. over-sexed, stubborn, argumentative; prefer to interact with/marry persons of their own disability, do not share SRH matters with families). One reason for these stereotypes may be a lack of intimacy between the staff and students of special education institutions. This is also evident in the disciplinary approach adopted by many staff members towards PWDs (separate boys and girls, do not let them be alone, always keep an eye on them, keep them busy, punish them for misbehaviour, etc.), focusing not on the SRH problems faced by PWDs, but the problems faced by staff in dealing with the SRH issues of PWDs.

There was considerable sharing regarding SRH matters between students with disabilities and their family members, as well as their friends and acquaintances (though the latter is considered an unreliable source by many PWDs). The incorrect idea that PWDs do not share SRH matters with family members may be based on the fact that this is more likely to be true of non-disabled children, who are much more independent, and have far greater access to persons outside the family than PWDs. Since most PWDs are greatly dependent on their families, it can be expected that they share SRH matters with them much more frequently than non-disabled persons.
The data clearly shows that sexual harassment takes place in institutions where PWDs live and/or study, that there is a definite increase in the reporting of harassment of PWDs in institutions during the last year, and most cases are dealt with by the staff of the concerned institutions without informing or involving high ups. At the same time we find that most staff members tend to deny the presence of harassment in their own institutions. There is limited awareness of the law regarding sexual harassment, and is limited to punishment for the harasser, without any knowledge for the need for a committee to deal with complaints. There is also a tendency to focus on the victim of harassment but not the perpetrator.

On the whole one finds the prevalence of an exclusive approach regarding PWDs. Most service providers and staff talk about separate facilities for PWDs regarding SRH and other services. There is considerable talk of fixing the impairments and disabilities of PWDs, but little talk of fixing the society which is responsible for impairments and disabilities turning into handicaps, mainstreaming PWDs, or focusing on their constitutional rights.

What is heartening to see however, perhaps for the first time in Pakistan, is the growing voice of PWDs themselves, which is both challenging and influencing decision makers at the highest levels, and bringing the discussion on inclusiveness and rights at the centre stage of the debate. This is of course timely, since a number of policies and bills regarding PWDs are in the process of being finalised.

Recommendations

It is obvious from the findings and conclusions of the study that improving the situation of SRHR of PWDs in Pakistan will require a massive, concerted and long-term effort of all key stakeholders. The present study is only a small beginning, and highlights some of the key issues involved. In order to move forward certain short, medium and long term measures are recommended.

To start with the findings and recommendations of this report should be disseminated to key stakeholders and decision makers. Since the present study is limited to one city, it cannot be deemed to represent the situation of SRH in Pakistan. In order to use the study findings for advocacy and lobbying, a larger, national level study will have to be conducted, including the formation of a National Reference Group, on the lines of the Reference Group formed for this study. The findings of such a national study should be used to develop key messages for policy makers, which can sensitize them to the need to develop a national policy and strategy for improving SRHR of PWDs. Organisations of PWDs, which have become quite active in Pakistan, and which have contributed significantly to this study, can play a prominent role in leading the advocacy effort.

Another important strategy to get useful information on SRHR and PWDs is to lobby the government/Ministry of Health/Statistical Bureau so that future surveys on reproductive health in Pakistan include PWDs in their sample and report findings separately for people without disabilities and people with disabilities. This has been done successfully in other countries and would provide very useful information on similarities and differences in the knowledge, attitude and practice and help target services better.

Since there is easy access to special education and health care institutions at the Lahore level, a pilot programme for developing the SRH knowledge and skills of special education staff, health care staff dealing with PWDs, parents of PWDs, and PWDs themselves should be initiated. It could include the following: development and distribution of easy to read pamphlets (including graphics, braille) on SRH for PWDs and their parents; development and conduct of a training programme for staff on CRPD, SRH, interpersonal skills, scientific and religious views regarding SRH; orientation of parents on SRH at Parent Teacher Meetings by trainers/staff; formation of anti-sexual harassment committees at each institution as per the law, followed by preventive actions at institutional level; establishment of peer counselling centres in institutions for PWDs, with SRH trained PWDs as mentors and trainers; development of culturally sensitive audio and video clips on SRH of PWDs for dissemination through electronic media, and simple articles for dissemination through print media.
Besides the training of staff mentioned above, other measures (e.g. involvement of former students as volunteers/interns, tutorial system, diary writing by PWDs) may also be considered for improving interaction between staff and students. These initiatives could be coordinated by a lead agency (e.g. provincial directorates of special education) with external technical support.

Based on the outcomes of the pilot test mentioned in the foregoing, the programme may be expanded to other settings (e.g. hospitals, clinics). Some possible measures include the introduction of SRH needs of PWDs in public health programmes so that health care providers are sensitized and equipped to deal with these needs in an appropriate manner, and the demonstration of a model of health care in public and private health care settings addressing the SRH needs of PWDs (e.g. easy access to health providers, providers trained to handle SRH needs of PWDs, sign language facilities). Long term measures could include the review of draft bills and policies on SRH from the perspective of PWDs, and the inclusion of SRH needs in policies and bills on PWDs. Civil society and research organisations focusing on health, human rights, special education, inclusive development, need to be actively involved in advocacy for the provision of services and awareness-raising for de-stigmatizing barriers. The sample may be widened to include transgender persons with disabilities, and persons from diverse religious communities and ethnic backgrounds in Pakistan.