By Alessandra Aresu, Inclusive Health Policy Lead | Humanity & Inclusion
In 2001, Joseline gave birth to her first child, Justin, in Burundi. Justin was healthy, but the birth had serious consequences for Joseline. A prolonged, obstructed labor caused a tear—an obstetric fistula—between her birth canal and bladder. A common occurrence in countries with poor health systems, obstetric fistula is rarely treated, and women who suffer from the condition face a lifetime of incontinence, discrimination, and isolation.
“The doctor did not know what was wrong and simply sent me home every time I asked for treatment,” Joseline recalls. “It didn’t get any better, and I didn’t have any money, so I couldn’t get treated.”
Joseline’s health condition had a significant impact on her life. “I couldn’t go to church, the market, or work anymore. I stayed hidden away at home for 11 years, afraid of being rejected by the people around me.”
In 2012, with support from Humanity & Inclusion (HI–the new name of Handicap International), Joseline finally underwent surgery to repair the fistula. The operation was a success. Like other patients under HI’s care, Joseline received physical therapy and counselling to help her recover both physically and psychologically.
Joseline is one of many women with and without disabilities affected by the lack of quality and affordable preventive, curative, and rehabilitative health services—services that each individual should be entitled to under the Universal Health Coverage (UHC). Identifying and addressing the barriers that prevent the most disadvantaged populations from accessing quality, affordable, and accessible health care is essential to ensuring that “no one is left behind,” – a core element of the Sustainable Development Goals (SDGs).
Behind these acronyms and mottos, there are facts, data, and principles that demand immediate attention. They represent the foundation of a disability inclusive and gender sensitive health perspective.
According to the WHO’s global report on disability, people with disabilities account for 15% of the global population, with 80% living in low- and middle-income countries. One in five women lives with some form of disability.
People with and without disabilities have the same general health needs. Yet people with disabilities are vastly underserved when it comes to accessing quality health care.
The right of people with disabilities to enjoy the highest attainable standard of health without discrimination is clearly stated in Article 25 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), the landmark disability treaty ratified by 175 countries by the end of 2017.
At the United Nations General Assembly in 2015, the adoption of the SDGs included disability in the post Millennium Development Goals definition, which set the ambitious goal of leaving “no one behind.” In particular, Goal 3 seeks to ensure healthy lives and promote well-being for all at all ages.
Despite these commitments, the WHO estimates that 50% of people with disabilities cannot afford health care. In addition, people with disabilities are two to four times more likely to be denied health care, to be treated badly in the health care system, and to find health care providers’ skills and facilities inadequate to meet their health needs. The information available on barriers and facilitators to health care for people with disabilities remain limited with little data disaggregated by gender, age, and disability.
Barriers become even greater when looking at Sexual and Reproductive Health (SRH) services. Studies confirm that when it comes to SRH information and services, the rights of people with disabilities continue to be violated due to deep-rooted discriminatory attitudes and practices, and a lack of law and policy enforcement. Forced sterilization and contraception, gender-based violence, denial of maternal, parenting and parental rights, denial of legal capacity and decision-making, lack of access to information and services, and a lack of access to justice are among the key rights violations women with disabilities face on a regular basis.
Interventions to promote the right to heath for all
To progress toward UHC and toward ensuring that the SDGs truly “leave no one behind,” Humanity & Inclusion and its partners work with multiple stakeholders to ensure that all the structural changes needed to offer disability inclusive health services are addressed and supported with technical expertise.
Identify, address, and eliminate the environmental, institutional, financial, and attitudinal barriers preventing people with disabilities from enjoying equal access to quality information and health services is at the core of each HI’s disability inclusive health intervention that addresses these barriers by:
- Supporting governments to develop and implement disability inclusive health policies
- Providing disability inclusive health training to the health personnel
- Raising the awareness of disability rights at the community level
- Supporting clinics to become more accessible.
Achieving disability inclusive healthcare requires three key elements.
- Accessibility—is a characteristic that all environments, products or services must have to be able to meet the needs of all persons, including people with disabilities. For example, providing clinics with ramps, sign language interpreters, and Braille materials, increase the level of accessibility of health services.
- Participation—including the meaningful engagement of women and men, boys and girls living with different disabilities in the design, implementation, monitoring, evaluation of all programs, and policies affecting their lives.
- Equality and non-discrimination—taking specific and systematic action to challenge all factors (attitudes, actions, policies, etc.) which discriminate against people on the grounds of disability, gender, age, or any other criteria.
To women like Joseline, disability inclusive healthcare means having access to a complete package of interventions that span from surgery and perineal rehabilitation, from income-generating activities to psychosocial support. HI’s participatory approach also includes training for women like Joseline to become community ambassadors. Today, Joseline supports other women facing similar situations.
If not deliberately included in the design of UHC strategies and reforms, the risk for people with disabilities “to be left behind” is significant. With over one billion people globally experiencing a disability, ensuring access to health care for people with disabilities—including rehabilitation—is essential to achieving SDG 3 and to contribute to the achievement of all the other SDGs.
No single project or organization can address this challenge alone. To develop inclusive and effective interventions, we must collaborate. We must create strategic partnerships. The recently established CORE Group’s Disability Inclusive Health Technical Advisory Group, co-chaired by HI, takes an important first step in this direction. The group aims to create a space for promoting knowledge sharing and synergies on disability inclusive health, and is open to all stakeholders willing to promote disability inclusive health. We welcome you to join us!