‘I am afraid of myself’

Dr Christine Peta Disability Issues —
Stigma is not just about non-disabled people looking down on disabled people: disabled people themselves can also look down upon themselves.

There are two types of stigma: public and self-stigma.

Public stigma occurs when the larger population discriminates against disabled people. Self-stigma happens when disabled persons themselves believe and internalise the negative attitudes of the public towards them.

Arising from public stigma, self-stigma is like a voice inside a disabled person that says “I am not good enough” as if by being disabled, a person has broken some rule about what it means to be a full citizen.

People know a lot about the negative views that prevail in society about disabled people, but knowing such views does not mean that a disabled person should believe them, agree with them or accept them. A person with disability who agrees with negative stereotypes begins to develop negative feelings and emotions about him or herself.

For example, people may believe that persons with mental disabilities are scary and dangerous and as a result they begin to discriminate against such people and choose to distance themselves from them (public stigma).

Persons with mental disabilities may also endorse such stereotypes about themselves by saying things like: “I am dangerous”, “I can kill”, “I am afraid of myself” and they may begin to distance themselves from others.

Internalising society’s negative attitudes results in reduced confidence and self-esteem, poor health and quality of life among disabled persons. Persons with disabilities may stop trying to be better people, and they may stop pursuing opportunities for education, employment, entrepreneurship, marriage and independent living.

In other words, with self-stigma persons with disabilities may begin to believe that they are worthless, thereby losing their hopes of accomplishing anything in life as if disability is a life sentence.

Self-stigma does not happen overnight, but it occurs in stages.

The first stage is when a person with disability becomes aware of public stigma towards the condition (awareness). In the second stage the person agrees that the negative public attitudes towards disabled persons are true (agreement).

In the third stage the disabled person concurs that these stereotypes apply to him/herself (application), resulting in depression and decreased self-esteem.

The ‘Why Try Effect’

One of the major outcomes of self-stigma is the “Why Try Effect” in which self-stigma interferes with life goals.

For example, a seasoned lawyer who acquires physical disability may say: “Why should I apply for a job as a magistrate? I don’t deserve such an important position. Why should I take that job from a non-disabled person, after all I am just a disabled person? Let me just leave that job for someone who is more worthy.”

When people see that they may be looked down upon, they engage in social avoidance – avoiding places and situations where they expect to be disrespected.

As people become aware of the stigmatising beliefs that society holds against them, they become anxious and may perform poorly across the board.

Self-stigma may also result in persons with disabilities believing that they cannot live independently.

A woman with one eye may say: “Why should I try to live on my own? I don’t think I can be independent. With only one eye, how can I run my own home? Let me just live with my mother forever.”

An example of the stages of self-stigma for a deaf person would go like this:

Awareness: The public believes deaf people are weak.

Agreement: That’s right, people who are deaf are weak.

Application: I am deaf so I must be weak.

Why try? To go into farming, No! I am not worth it. I am not able.

Confronting self-stigma

Some disabled people, particularly those with severe disabilities, are not aware that there is such a thing called stigma, hence they don’t even suffer from it.

Other disabled people are aware that they are stigmatised and they internalise it and suffer from it.

The most interesting group is the one that comprises of people who have righteous anger at the unfairness of stigma. Such people do not create room in their lives for self-stigma but instead they are optimistic and they seek to empower themselves.

The first step in dealing with self-stigma is disclosure.

Some people prefer to keep secrets by not letting other people know about their disabilities, particularly in the case of invisible disabilities. But one way of fighting against stigma is to come out, and to let other people know, for example, about the history of one’s mental disability and thereafter seek to move on.

Once a person is open about their situation, they begin to worry less about being “discovered” and may soon find people willing to support them.

However, that is not to say that being open about one’s invisible disability is free of negative outcomes. Openness may actually bring about discrimination by members of the public.

For example, in India, documentation of mental disability is grounds for divorce, hence deciding to disclose becomes a personal decision, which is tied to culture (Thara et al, 2003).

Some people may choose to associate with people who have the same kind of disability as theirs only, the disadvantage is that such people may live a life which is highly restricted.However, an example of different types of disclosures are as follows:

Selective disclosure: I will only tell people whom I think will understand me;

Indiscriminant disclosure: I will tell everyone about my disability, I won’t hide it from anyone; and

Broadcast: I am proud of who I am, disability is not inability, so even if people cannot see my disability, I will just tell them about it.

The advantage of broadcasting one’s situation means that a person may be educating others about the disability, as well as fostering a sense of power over one’s experiences.

Way forward

When people are stigmatised it is very hard for them to not take it in, if you are persistently told that you are worthless, it may just be a matter of time before you start feeling worthless.

To be affected by self-stigma does not mean that a person has some kind of psychiatric symptom which needs to be corrected. We should all make an effort to help people who are affected by self-stigma because it is not their fault that they have such kind of stigma.

The reality is that stigma is a social injustice or an error that we make as members of society, hence the entire society which creates the stigma in the first place, has a responsibility to eliminate it.

Families and communities should play an active role in curing stigma by providing support, particularly to people who may have just disclosed their invisible disabilities.

The irony of the matter is that both public stigma and self-stigma do not only affect how people feel about themselves, but it also comes with serious health consequences. Due to self-stigma people with disabilities, particularly those with mental disabilities may work against effective treatment, support and recovery, they may refuse to see a doctor, thereby increasing the duration of untreated symptoms.

As a society, we need to refrain from engaging in practices that perpetuate the stigmatisation of persons with disabilities, but we should recognize their contribution, accept difference, encourage disclosure, challenge negative attitudes and behavior and seek to support and empower them.

To persons with disabilities I say, spend time with people who are positive and supportive in your life and take less notice of people who pull you down; realise your strength and value and do things that make you feel good about yourself.

Dr Christine Peta is a public healthcare practitioner who, among other qualifications, holds a PhD in Disability Studies. Be part of international debate on how best to nurture a society which is more accessible, supportive and inclusive of disabled people. Partner Disability Centre for Africa (DCFA) on [email protected]