By Naume Ndanatsei Watyoka
According to research, more than 90% of people with developmental (intellectual) disabilities will experience sexual abuse at some point in their lives. Forty-nine percent will experience 10 or more abusive incidents. This implies mental health problems for the group hence the need for preventive measures and amplifying sexual and reproductive health services for this special group of people in order to be equitable. Policies at national and institutional levels need to be sensitive to the needs of persons with intellectual disability. While adults with intellectual disability have normal sexual interests and desires, relationally, questions are often asked as to whether people with intellectual disabilities will manage sexual relationships. Are they able to decide to marry and who to marry as well as undergo all procedures to be considered married? Are they able to decide on contraception? Are they able to use condoms? Do they need a third party to show them how to each time? If they have children, will they manage to look after them, if not who will? Can a relationship between a person without intellectual disability and a person with intellectual disability considered mutual and on equal power basis? Can a person with intellectual disability consent to sex? Rights need to be backed by implementable policies for the realisation of such rights. Focusing more on empowerment and facilitating rights compared to focusing on deficits recognises people with intellectual disability as people first. It takes collaborative work and commitment to respond to the needs of persons with intellectual disability considering their “deficits” as shown below.
Intellectual disability is characterised by deficits in intellectual functions, such as reasoning, problem-solving, planning, abstract thinking, judgment, academic learning, and learning from experience, confirmed by both clinical assessment and individualized, standardized
intelligence testing. People with intellectual disability also have deficits in adaptive functioning that result in failure to meet developmental and
sociocultural standards for personal independence and social responsibility.
Without ongoing support, the adaptive deficits limit functioning in one or more
activities of daily life, such as communication, social participation, and
independent living, across multiple environments, such as home, school, work,
and community. Intellectual and adaptive deficits are noted during the developmental period. Intellectual disability ranges from mild, moderate, severe and profound with onset before the age of 18 years due to a number of causes.
The National Disability Policy of Zimbabwe is a good starting point for meeting the needs and rights of persons with various disabilities and needs augmenting realising that the disabilities are different. Where intellectual disability is concerned, it is difficult for persons with intellectual disability to represent themselves and need to be supported by those with an understanding of that disability.
Historically there were invasive ways of ensuring that people with intellectual disabilities would not reproduce for the reasons that they were considered inferior and having defective genes. In Zimbabwe, institutions caring for people with intellectual disabilities have limited means to support sexual and reproductive needs of the clients. Parents may not be supportive of their children’s romantic relationships due to their disability.
According to research, social risk factors for mental health problems in persons with intellectual disability are that friendships may be few and unsatisfying with closest relationships often being paid staff; inadequate family participation as well as challenges with social skills. Other social risk factors include a history of experiencing loss, experience of marginalization, prejudice and stigma; experience of being taken advantage of; discouragement from having romantic relationships; lack of sexual contact and or knowledge; and stressful social interactions associated with increased psychological distress.
Psychological risk factors for mental illness in individuals with intellectual disability include experience of helplessness as a result of being taught to be compliant and lack of independence in carrying out tasks; shame associated with having a disability; experiences of abuse, being bullied and neglected; primitive defence mechanisms; anxiety induced by novel experiences as a result of feeling incapacitated; voice-lessness and incapacitation for insight resulting in an externalising emotional distress.
Imagine a parent who struggles to raise 2 of her children with intellectual disability and how they feel about having the responsibility of caring for grandchildren if their own children have children considering that independent living may not be possible. They are caught in between yearning for grandchildren and avoiding additional burden of care when they have limited social and government support. Left with a few options they may in most cases choose contraception as a convenience and a protection for their child knowing they will not be able to deal with pregnancy, child birth and child care and possibly sexually transmitted diseases. If that same parent has other children without intellectual disability, there is no guarantee or commitment that siblings will take care of their siblings with intellectual disability as well as their offspring and neither is there clear governmental commitment to offer supported living.
Persons with intellectual disability are protected from abuse if given sheltered employment yet such opportunities may not be available.
A community assessment assists to unravel the gap between ‘what is’ and ‘what is desired or should be and resources, and the underlying cultural and social structures that enable understanding the way to address needs of a community whilst utilizing its own resources. Needs analysis help with asking questions why the need exists, who is affected most and how to satisfy the need.
Recommendations for incorporation into policy
A careful needs assessment and analysis is required to hear out the caregivers of those with intellectual disabilities to hear out their feelings and concerns pertaining to sexual and reproductive rights of people with intellectual disabilities before becoming accusatory of not meeting the same rights. Community psychology is about interventions informed by needs, collaborative action, prevention, empowerment and participation.
The following steps help with solutions to fulfil sexual and reproduction rights of people with intellectual disabilities:
- Working groups for specific disabilities should be created and those groups then combine to inform policy from various angles also realising that some have disabilities straddling a number of areas, a person with intellectual disability may also have physical disability and psychosocial disability. Reports from those working groups should also guide the national reports to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) committee.
- Hearing from the caregivers is important so that necessary support systems are offered in order to fulfil sexual and reproduction rights of persons with intellectual disabilities.
- Hear the views of persons with intellectual disabilities on the subject matter.
- Address barriers that limit fulfilling sexual and reproductive rights of persons with intellectual disability.
- Give alternatives to presented problems.
- Get the bigger picture and recommendations from caregivers as well as those with intellectual disability in order to have positive change that prevents abuse and meet the sexual and reproduction rights of persons with intellectual disabilities.
- Empower persons with intellectual disabilities as well as their caregivers by providing education, resources to meet sexual and reproduction rights and supported living.
- Intellectual disability sensitive national budgeting should be considered in order to support those with intellectual disabilities and their caregivers.
- Prevent secondary mental health issues brought about by neglect and lack of social support to those with intellectual disability and their families.
Naume Watyoka writes in her own capacity and is interested in policy issues relating them to Community Psychology concepts. She works with people with intellectual disabilities.
