What is Stigma?

In my study of disabilities in Uganda I uncovered the uncomfortable truth that all disabilities carry with them stigma and prejudice (see Summary of findings from Uganda Disability Review 1 of 2). Stigma and prejudice do not effect persons with disabilities (PWDs) alone, they affect the reactions of those without disabilities. It was understood, for instance, by doctors and health workers that certain conditions carry with them stigma and prejudice, meaning that doctors were less likely to give a diagnosis of a stigmatizing condition, or health workers were reluctant to work with people whose conditions carried stigma and prejudice. Or again unconsciously, or through ignorance PWDs are treated with stigma and prejudice. In the next blog posts I will investigate stigma and prejudice. I will begin by discussing stigma.

It seems clear that no one wants to be stigmatized. Yet stigma exists in all strata of society. What is stigma? Stigma is not a new concept for sociologists, Émile Durkheim wrote about it in 1895. It was however the study of sociologist Erving Goffman in his 1963 book Stigma: notes on the management of spoiled identity that identified the role of stigma in society. 

Stigma, Goffman says, is a behavior, attribute or reputation that is socially discrediting in some way. The individual that has the attribute is classified by others as undesirable. They are rejected in a stereotypical way, as opposed to being accepted in a normal way. Wikipedia continues:

Society establishes the means of categorizing persons and the complement of attributes felt to be ordinary and natural for members of each of these categories. [...] When a stranger comes into our presence, then, first appearances are likely to enable us to anticipate his category and attributes, his "social identity" [...] We lean on these anticipations that we have, transforming them into normative expectations, into righteously presented demands. [...] It is [when an active question arises as to whether these demands will be filled] that we are likely to realize that all along we had been making certain assumptions as to what the individual before us ought to be. [These assumed demands and the character we impute to the individual will be called] virtual social identity. The category and attributes he could in fact be proved to possess will be called his actual social identity. (Goffman 1963:2).
While a stranger is present before us, evidence can arise of his possessing an attribute that makes him different from others in the category of persons available for him to be, and of a less desirable kind--in the extreme, a person who is quite thoroughly bad, or dangerous, or weak. He is thus reduced in our minds from a whole and usual person to a tainted, discounted one. Such an attribute is a stigma, especially when its discrediting effect is very extensive [...] It constitutes a special discrepancy between virtual and actual social identity. Note that there are other types of [such] discrepancy [...] for example the kind that causes us to reclassify an individual from one socially anticipated category to a different but equally well-anticipated one, and the kind that causes us to alter our estimation of the individual upward. (Goffman 1963:3).

People are related to stigma in 3 ways:

1. There are those that are stigmatized
2. Normals who are not stigmatized
3. The wise who are normals that have an understanding of the stigmatized, and are accepted by the stigmatized.

Wikipedia continues:

The stigmatized: are ostracized, devalued, rejected, scorned and shunned. They experience discrimination, insults, attacks and are even murdered. Those who perceive themselves to be members of a stigmatized group, whether it is obvious to those around them or not, often experience psychological distress and many view themselves contemptuously...
The stigmatizer: From the perspective of the stigmatizer, stigmatization involves dehumanization, threat, aversion and sometimes the depersonalization of others into stereotypic caricatures. Stigmatizing others can serve several functions for an individual, including self-esteem enhancement, control enhancement, and anxiety buffering, throughdownward-comparison—comparing oneself to less fortunate others can increase one's own subjective sense of well-being and therefore boost one's self-esteem.

16-year-old HIV-positive Kenyan girl, whose mother died from AIDS-related complications, recounts her experiences

The 2013 paper Harnessing Poverty Alleviation to Reduce the Stigma of HIV in Sub-Saharan Africa describes the stigma process:

• Goffman described stigma as an attribute that is “deeply discrediting” and that, in the eyes of society, reduces someone “from a whole and usual person to a tainted, discounted one”.
• Persons with and without the stigmatized attribute are separated into two categories: “them” vs. “us”.
• Internalized stigma results when stigmatized persons come to accept these inhospitable attitudes as valid, thereby developing self-defacing beliefs and perceptions about themselves.
• Enacted stigma results when clandestine hostility and/or overt acts of discrimination are directed towards persons specifically because they possess the stigmatized attribute.
• In such an environment, even stigmatized persons who are not directly victimized may experience fear in anticipation of being targeted (felt stigma).
• These processes are contingent on differentials in power.

This 2015 article Not All Disabled Are Created Equal about disabled children in Uganda illustrates many of the points made above. The negative belief that disability is a curse or a punishment from the gods or a witch doctor stigmatizes children. Another form of stigmatization is that it is thought that youth's with disabilities are not sexually active because of their disability so they do not get HIV/AIDS education. Henry Nyombi the lawyer has become the "wise", not only does he not internalize the stigma he also, like his mother, another "wise" refuses to accept the stigma: 

The birth of a child is a time of celebration; families are excited about the newest edition to their family. Sadly, this is not the case if you are a disabled child born in Uganda.
Children with disabilities face extreme forms of violence, stigma and discrimination based on misconceptions about the cause of disability that are rooted in cultural beliefs and traditions.
The most frequently-stated causes of disability in Uganda and Africa at large include witchcraft; a curse or punishment from “gods,” anger of ancestral spirits, bad omens, reincarnation, heredity, incestuous relationships, and the misdemeanors of the mother. These misperceptions not only lead to stigma, but also to a belief that children with disabilities should be demonized.
As a result, children may be lashed in attempts to drive out “evil spirits” causing the disability, or may be neglected or even killed. Negative attitudes about children with disabilities within communities are reinforced at the household level and parents themselves often contribute to these children becoming invisible, virtually hidden from society.
Henry Nyombi, a lawyer whose mother refused to see his disability as a bad omen from God is a man who chooses to inspire the disabled children in Uganda. He has formed the Youth with Physical Disability Development Forum; a community-based organization established by youth with disabilities whose mandate is to contribute to an environment that empowers children and youth with disabilities to realize full social, political and inclusive development.
Data relating to Children with disabilities is scarce, and to some extent, unreliable. Significant gaps in information are the lack of disaggregation of statistics by gender and types of disabilities and the nonexistence of national and accurate data in other areas than education. Based on estimations, the child disability prevalence is about 13% — approximately 2.5 million children live with some form of disability in Uganda.
Coupled with the above, the statistical information available in Uganda indicates extremely low enrollment and completion of primary and secondary schools by Children with disabilities (cwds). In fact, only about 9% of children with disabilities attend primary school, compared with a National average of 92%, and only 6% of them continue studying in secondary schools. YPDDF implements the following programs and interventions.
Young people with disabilities are among the poorest and most marginalized of the world’s youth. Estimates suggest that there are between 180 and 220 million youth with disabilities worldwide, and nearly 80 percent of them live in developing countries.
Youth with disabilities (YWDs) are often found with a low self-esteem, belonging to the poorest of the poor in society. Most YWDs do not complete their education; highest amongst girls. Due to lack of access to education most YWDs do not have skills and competencies required for employment or to become involved in any activities that can give them a livelihood.
Hence most of them are left out in most of the government programs intended to reduce poverty levels among rural communities such as NAADs. In addition, the physically demanding nature of unskilled labour also makes it difficult for disabled youth to be involved in labour intensive activities, that otherwise do not require high skills or competencies.
This programs’ focus is on improving livelihood of YWDs through empowerment in terms of skills and competencies in managing viable income generation activities as well as empowering YWDs households to be able to meet their basic needs. Over 80 disabled youth have gained independence from training and have begun small- scale businesses like candle making.
Youth and children with disabilities are vulnerable, by virtue of their impairment and negative societal attitudes arising from fear, ignorance, superstitions, neglect and to a large extent, lack of awareness of their rights. As a result, they are very often discriminated by service providers from the development programs. It is assumed that they are not sexually active, thus are at minimal or no risk at all of sexual and reproductive health and HIV and AIDS infections.
YWDs often experience stigma and marginalization in accessing social services such as education, health, sexual reproductive health and HIV/AIDS services among others.
Female youth with disabilities are often victims of sexual and gender violence, sexual harassment thus predisposing them to HIV infection. Available sexual reproductive health and HIV/AIDS services and policies do not provide for special emphasis on disability friendly services but are rather lumped under the vulnerable populations.
It saddens me to know these atrocities are occurring in our beautiful world and would like to help Henry in supporting his efforts at changing the lives for the disabled children and youth of Uganda. “There is no trust more sacred than the one the world holds with children. There is no duty more important than ensuring that the rights of children including children with disabilities are respected, their welfare is protected, and that their lives are free from fear which can grow up in peace.”

Stigma is a complex social phenomenon that has been studied by sociologists for more than a century. Stigma affects all levels of society interacting in complex ways. The resulting discrimination brought about by stigma is deeply harmful. It is therefore important to understand the role of stigma and its affects within the general population and upon the stigmatized. Understanding stigma and its resulting discrimination will help in developing strategies for future work.