The Mental Health of Persons with Disabilities Living with HIV And the Policy Context That Supports or Subverts Quality Life Outcomes
The General Policy Context and Environment
The Government of Uganda have made a series of conceptual and practical commitments to the rights of Persons With Disabilities (PWDs) in Uganda. These include affirmative actions in legislation and policy, and quotas for political representation of persons with disabilities at all levels of governance which should be devolved at local government, County, sub counties and villages. The Persons with Disabilities Act (2020) provides for the respect and promotion of human rights for persons with disabilities.
However, despite the good intentions outlined in legislation and policies, there are gaps in the way policies, plans and programmes are implemented, monitored and degrees of compliance. These gaps spring from the state not investing in long term culturally sensitive entities addressing demographic or human services. The ones that exist to serve persons with disabilities lack staff and are conditioned project-related handouts which engage in planned activities during the bloom when projects have been facilitated with funds. This phase dries up once the money has been exhausted.
To deliver long term services effectively, the Government of Uganda needs to better understand that the context and environment is a service milieu in which adults and children with disabilities in Uganda are consumers competing with better privileged and advantaged persons. There is need to establish a strategic context and environment in which PWDs are seen as cooperators. This will attract long term investment, leverages institutionalized approaches, fosters affirmative inclusion, diversity, and equity. It is this setting that addresses barriers facing PWDs.
Understanding disability in Uganda
While the Government of Uganda has made a constitutional commitment to the equal rights and opportunities for persons with disabilities in Uganda, it does not define what “disability” is or who is a person with a disability given the progressive nature of circumstances of disability. However, although there have been a range of definitions and description of disability used across national legislation and policies, most are broadly rights based.
This is in line with the UN Convention on the Rights of Persons with Disabilities (UNCRPD), to which Uganda is signatory. A right-based approach understands disability as an “evolving concept”, based on a dynamic interaction between a person’s long-term physical, mental, intellectual, or sensory impairment and environmental, attitudinal, and other barriers that “hinder their full and effective participation in society on an equal basis with others”. The revised Persons with Disabilities Act (2020) is intended to address these criticisms, although it is not fully compliant with a rights-based approach.
HIV/AIDS and TB among PWDs, Stigma, Discrimination and Aspirations for Quality Life in Uganda
A quality life for all has several parameters but these are experienced differently due to gender, age, identity, and status. For Persons with disabilities living with HIV, quality life aspirations are interlocked with presenting disability too. There is not much literature on the incidence of HIV/AIDS among people with disabilities in Uganda. This is mainly due to several factors.
It may be because the HIV/AIDS control need to consider integrated HIV/AIDS services and clinics serving people with disability. They need to establish data gathering and sharing where PWDs living with HIV are mentioned and visible. This will further empower PWDs to conduct peer-to-peer mobilization and health promotion.
It is also attributed to the factors ranging from infrastructure, disclosure, privacy, accessibility, availability, and affordability yet these factors are key to quality living. These notions require the input of PWDs because most of them are skewed toward abilities that may not factor in for instance those in wheelchairs or intellectually disabled.
Children who lose parents to AIDS suffer traumatic and psychological torture and are orphaned at an age when parental care and guidance is most needed. For children whose parents are bedridden or dead, the quality of care, education, nutrition and socialization is often poor. The rate of sexual abuse by adults who think that PWDs or children are free from HIV/AIDS is also very high. The girl child with a disability faces higher vulnerability.
Many women with disabilities rarely get an opportunity to have sex as most times, men consider able –bodied women first before approaching a disabled woman. What happens is that when a man approaches a woman with disability, she does not want to lose this opportunity because they do not know when it will come again. This has psychosocial, sexual reproductive health, physical health, and mental health consequences. Some of these consequences include unplanned for pregnancies, STIs/STDs, lack of couple counselling, guidance, and life span planning.
Although Uganda as a country has been at the forefront in the fight against HIV/AIDS, some categories of people have not been targeted. PWDs have not been educated on this deadly disease and a good number of them have died of HIV/AIDS and TB. Because of their socio-economic situation, some PWDs cannot read or write and as a result cannot access available literature on HIV/AIDS or TB. For those who are educated, there are still other limitations, for example the blind can only read Braille, the deaf/blind require interpreters to be able to benefit from audio programmes on radio, television, and other media. These services are costly and hardly available.
PWDs in Uganda face discrimination and barriers in accessing equal opportunities which deprives them the full participation, enjoyment and realization of their human rights and fundamental freedoms.
The UN Convention on the Rights of Persons with Disabilities (CRPD) was adopted to guarantee the protection and fulfillment of the rights of PWDs. Despite the legal protection of their rights enshrined in the CRPD and Constitution of the Republic of Uganda, 1995, PWDs continue to be marginalized. The 1995 Constitution of Uganda, which recognize the right of PWDs to inherent dignity. The CRPD is the universal standard for the protection and realization of human rights and fundamental freedoms of PWDs. The objective of the CRPD is to “promote, protect, and ensure the full and equal enjoyment of all human rights and fundamental freedoms of all PWDs without discrimination of any kind.
The PWDs Act, 2006 made provision for respect, protection and realization of human rights of PWDs constitutional but fell short on enforcement. Under the CRPD, Uganda has an obligation to domesticate the Convention and take measures towards its implementation, including through legislative reform.
A Review of Existing Legislation (and Bills) Relating to The Rights of PWDs
The principal obligation of Uganda under Article 4 of the CRPD is “to ensure and promote the full realization of all human rights and fundamental freedoms for PWDs without discrimination.” However, it is observed that the following existing and envisaged laws fall short of the CRPD:
i) The Uganda Persons With Disabilities Act, 2020;
ii) the Constitution of the Republic of Uganda;
iii) ii) the Persons with Disability Bill (2014);
iv) iii) the Children Act;
v) iv) the Succession Bill (2011);
vi) v) the Divorce Act (1904);
vii) vi) the Hindu Marriage and Divorce Act (1961);
viii) vii) The Trial on Indictment Act (1971);
ix) viii) the Mental Health Bill (2014);
x) ix) the Mental Treatment Act Cap 279 and
xi) x) the Citizenship and Immigration Control Act (2009).
The Marriage and Divorce Bill 2009, Administration of Estates of Persons of Unsound Mind Act
112 Under Article 4 (1) (a) and (b) of the CRP, the State committed to adopt all appropriate legislative measures for the implementation of the CRPD and to modify or abolish existing laws which contravened the CRPD. The Bill was gazetted on May 9, 2014 according to Disability Rights Coalition, (2014) “Proposed Alternative Persons with Disabilities Bill Presented to the Hon Minister of Gender, Labour and Social Development.”
§ Non discrimination
§ Right to equality
§ Accessibility
§ Equal recognition
§ Right to access legal capacity
§ Own property, control their finances
§ Access to justice
Recommendations:
Considering the above factors, I would recommend the following interventions with the hope and expectation that they will lead to the empowerment of PWDs as change agents in this era when we are set to eradicate HIV/Malaria/TB by 2030:
There is need to:
§ Establish contexts that involve PWDs networks and empower them to embrace integrated service demand and delivery which contributes to efforts to eradicate HIV/TB/Malaria by 2030.
§ Adopt appropriate and disability cultural-sensitive channels of communication disseminate HIV/TB/Malaria Prevention messages/information to the community of PWDs.
§ Print HIV/TB/Malaria Prevention posters showing PWDs. This attracts the attention of the public and stirs them into positive action and intervention.
§ Lobby Government to promote and decentralize person-centered and integrated service delivery services sensitive to disabled persons such services may provide VCT, Sexual Reproductive health, TB screening, Diabetes, Heart heath in all districts.
§ Promote adult literacy programmes for PWDs to enable them to read, write and interpret disseminated HIV/TB/Malaria Prevention messages.
§ Organize and strengthen community outreach programmes targeting PWDs and their families.
§ Train and counsel PWDs on positive living with HIV/AIDS and individual behavioural change.
§ Sensitize PWDs about safer sex options with emphasis on abstinence.
§ Ensure full participation of PWDs in HIV/AIDS control and sensitization activities.
§ Facilitate training of service providers in sign language to be able to reach out to the Deaf.
§ Train reproductive health peer educators (leaders of disabled people) drawn from PWD communities/groups to assist in training PWDs in life planning skills.
§ Train reproductive health and HIV/AIDS service providers for effective reach of PWDs.
§ Provide gender sensitive counselling to PWDs including family planning services and contraception.
§ Strengthen networking with other organizations working in HIV/TB/Malaria Prevention and human rights.
§ Support PWDs drama groups to disseminate information on HIV/AIDS and reproductive health.
§ Provide the PWDs with radios to subsidized prices to enable them access messages on HIV/AIDS and follow sensitization programmes.
§ Lobby Government and policy makers to incorporate disability issues that allow formation of SACCOs to promote informed access to credit facilities.
§ Strengthen support to disabled people’s organizations at lower levels to enable PWDs meet, exchange information and work towards improving access to health services.
§ Use of media to increase awareness on the plight, abilities and reproductive health needs of PWDs including the dangers of unprotected sex in light of the HIV/AIDS scourge.
§ Initiate a specially designed programme on HIV/TB/Malaria Prevention targeting young people with disabilities purposely to counsel, guide, advise / equip them with basic quality information and education regarding health care and HIV/TB/Malaria. This is because not much awareness has previously been made to them, yet we can contribute to all efforts to eradicate HIV/TB/Malaria by 2030.
CONCLUSION
People with disabilities can be empowered to contribute to self and community wide quality life outcomes. They can acquire the knowledge and skills to formulate and generate ideas that contribute to policy, plans and programming leading to better life and standards of living. The call to “leave no one behind” and such Key Performance Indicators (KPIs) where PWDs are consulted will post equity and high-performance indicators during say, Community Led Monitoring (CLM) surveys. Other wise we fall short and are betraying the PWDs when they are left out.
