Rahnuma-FPAP engaged the Institute of Social Sciences (ISS) to conduct a research study to identify different kinds of sources of SRH information available to Persons With Disabilities (PWDs), 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. 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 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 center stage of the debate. This is of course timely, since a number of policies and bills regarding PWDs are in the process of being finalized.
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