That much remains to be done to make People Living with Disabilities (PWD) feel welcome in our health care facilities comes out clearly from the desperate comment by Kenya’s Minister of Medical Services, Professor Peter Anyang’ Nyong’o, in his article entitled Tribute to Agnes Muthakye for brave battle to live happily despite albinism, (Standard on Sunday, February 19, 2012). He writes: “With the passing on of Agnes we must all focus on the needs of people living with albinism and the response expected from our health care system…… Very often it is the family which lives to remember the negligence of a health facility when their loved one is passed on…. . That compassion makes for good memories later. These are values and practices that need to sink deep into our medical professions.”
Albinism is a group of inherited disorders that result in little or no production of melanin. The condition results from a mutation in one of several genes which are responsible for the production of melanin by cells called melanocytes, which are found in the skin and eyes. Most people with albinism are sensitive to sun exposure and are at increased risk of developing skin cancer and visual impairment. By the way, according to the National Organization for Albinism and Hypopigmentation (NOAH) the term “person with albinism” ‘will always be a kinder, gentler, less shocking term compared with “albino”’.[1]
A young man, who has been affected by polio, enjoying the beach in Benguela, Angola.
Professor Anyang’ Nyong’o’s article reminded me of experiences while serving as a member of a team that traversed the country during a public inquiry on violations of sexual and reproductive rights in health institutions in Kenya, which was conducted by the Kenya National Human Rights Commission (KNHRC) during 2011. In every region we visited there were delegations of PWD.
According to the International Classification of Functioning, Disability and Health (ICF)[1] disability is an umbrella term for impairments, activity limitations and participation restrictions. Disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society and environment in which he or she lives. It is extremely diverse. While some health conditions associated with disability result in poor health and extensive health care needs, others do not. However all people with disabilities have the same general health care needs as everyone else, and therefore need access to mainstream health care services. They need to feel they are welcome.
Disability is especially a human rights issue. People with disabilities experience inequalities, for example, denial of equal access to health care, employment, education, or political participation, as well as being subjected to violations of dignity, for example, when they are subjected to violence, abuse, prejudice, or disrespect simply because of their disability; or denial of autonomy when they are subjected to involuntary sterilization, or confined in institutions against their will, or when they are regarded as legally incompetent because of their disability.
According to the WHO, disability affects 10% of every population. An estimated 700 million people worldwide experience some form of disability. Surveys conducted in 55 countries by the Disability Statistics Compendium show prevalence rates varying from 0.2% to 21%. The Kenya National Survey for Persons with Disabilities (2008)[2] gave the overall disability rate to be 4.6%, which translates to 1.7 million people living with disability (based on 2009 Census). The survey reported the main forms of disabilities to be physical impairment (1.6%) and visual impairment (1.4%), these two accounting for 65% of all disabilities.
People with disabilities confront a range of handicapping situations depending on the nature and extent of their disability. Access to infrastructure and services is a big challenge to the enjoyment of right to health for PWD. Yet, Article 25 of the UN Convention on the Rights of Persons with Disabilities (CRPD) reinforces the right of persons with disabilities to attain the highest standard of health care, without discrimination.
The Constitution of Kenya 2010 Article 27 (4) states that the State shall not discriminate directly or indirectly against any person on any ground, including (among others) disability; while in Article 28 every person has inherent dignity (disability notwithstanding) and the right to have that dignity respected and protected. Reduction of health inequalities is a stated goal in both Kenya’s National Health Sector Strategic Plan II (2005) as well as the National Reproductive Health Policy (2007). Further, the National Reproductive Health Strategy 2009-2015 (August 2009) has the objective of addressing the special RH needs of people with disabilities by increasing their access to sexual and reproductive health services.
The challenges that PWD face in their quest to enjoy their right to health operate at the physical, emotional and economic levels, and mostly relate to concerns about accessing health facilities, communicating with health service providers, negative attitudes among service providers, and non affordability of services.
It can be observed that the design of the health care systems has not factored in the special needs of PWD. Physical access to health care facilities are a challenge especially for the physically disabled and the visually impaired persons, to whom even boarding and disembarking a matatu can be problematic, and mobility within health facilities is hindered by lack of suitable ramps, (metallic ramps may be too slippery and dangerous), while distances between service areas within health facilities are prohibitive in the absence of paved paths. Inside clinics, high examination couches and delivery beds make it difficult to get onto them.
In the absence of Sign Language and Braille facilities in health care institutions access to information remains a major challenge for those with hearing and visual impairment. For example, the traditional system of calling out of appointment numbers or names at clinics discriminates the deaf, while flashing the numbers discriminates the visually impaired. It is a challenge to explain prescription details in pharmacies, or confidentially communicate results of sensitive tests such as HIV test, without involving third parties.
Coping with the pervasive negative attitudes of service providers is another challenge. Generally, health service providers lack appreciation of the nature and concerns of PWDs, and often tend to be too sympathetic to be rational in dealings with them. On their part, PWDs complain of frequent discrimination and mistreatment in health facilities, mainly because of their failure to understand instructions. Sometimes health professionals fail to appreciate that PWD have feelings as themselves; they can love and be loved. Sometimes pregnant women with disabilities are confronted with embarrassing questions from health workers such as: “Who put you in this situation?’. They are not expected to enjoy sex and the joy of conceiving and delivering a child.
Medical people quite often take a lot of things for granted, and do not always stop to explain in detail certain procedures before doing them, especially in busy clinics. For example, they impulsively check temperature and blood pressure, without much in way of explaining to patients. It is also taken for granted that a visit to a Gynaecology clinic implies awareness that a pelvic examination would be carried out. However, this can be frightening, embarrassing and even offensive to those who do not see or hear what is going on around them.
Clearly a lot needs to be done to ensure PWD feel welcome in health facilities; it is time that needs of PWD are mainstreamed in the design and implementation of health services. To begin with the design of health facility infrastructure should factor in movement of those with physical and visual disabilities. Also, health facilities should ensure there is someone who can communicate through sign language, while at the same time, training of health care workers should include understanding of needs of disabled persons.
Image source: WHO Images of Health & Disability
[1] International Classification of Functioning, Disability and Health (ICF), is a classification of the health components of functioning and disability, which was approved by the World Health Assembly on May 22, 2001. ICF complements WHO’s International Classification of Diseases-10th Revision (ICD), which contains information on health condition, but not on functional status.
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