Tuesday, 26 May 2020

Responses to persons with disabilities during the COVID-19 responses


Addressing Persons with Disabilities and those Working with them during the COVID-19 Emergency Situation

MENTAL HEALTH AND PSYCHOSOCIAL RESPONSES TO COVID-19

 

It is common knowledge that in times of emergencies, including health emergencies, persons with disabilities, among other groups who are vulnerable are usually affected differently. Their mental health is usually affected negatively. It is not only the mental health of persons with disabilities that is affected but that of their partners, support persons and families. Therefore, this article will Endeavour to focus on how the COVID-19 pandemic may affect the mental health of persons with disabilities and those who work around them.

 

It is essential to understand what “mental health” is because a mention of the term usually is received with negative feelings. Many people associate “mental health” as an equivalent of “mental illness” when it is not. According to the World Health Organisation (2015) mental health is a state of well-being in which the individual realizes his or her own abilities, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to his or her community.

 

This is easy and straight forward. So, COVID-19 emergency responses and interventions may compromise or affect the state of mental well-being of persons with disabilities and those people working around them. It is therefore important for the government to realise this mental health issue in relation to the COVID-19 emergency responses and interventions. Persons with disabilities must be a priority, together with other vulnerable groups. But, public emergency responses usually tend to ignore them or attend to them as an afterthought. This, we have observed in our advocacy work especially when it comes to droughts, floods, cholera and so on. They are the first to forget and the last to remember. It is thus essential that persons with disabilities, through their representative organisations take proactive measures to strategically advocate for specific emergency, administrative, policy or legislative measures to have persons with disabilities prioritised during such emergency situations.

 

We are all aware that persons with disabilities, especially girls and women with disabilities, face several forms of stigma and discrimination that begin right from the families they live with, to the communities and society as a whole. In most cases, they live in seclusion or in designated segregated areas like rehabilitation centres or institutions.

 

It is not uncommon for persons with disabilities to exhibit fear of being discriminated in many spheres of human development. For instance, many persons with disabilities usually express some of the following:

  1. avoiding visiting any health facility in fear of stigma and discrimination. This includes the fear to access sexual and reproductive health services, including HIV services because of the perception that they may be ‘asexual’ or not sexual active leading to non-protection.
  2. fear of losing livelihood or employment as a result of perceived unwantedness from the society and employers;
  3. fear of being isolated or secluded as a result of any form of impairment, especially psycho-social impairments;
  4. fear of being socially excluded because of a previous admission or seclusion in a mental health institution;
  5. feeling a sense of being stigmatized just because you are a care-giver or parent of a child with a disability;
  6. feeling discomfort among peers just because you are in love or you a spouse to a person with a disability;
  7. avoiding falling in love or any intimate relationships with other persons without disabilities in fear of rejection and scold and embarrassment;
  8. regular and consistent feeling of helplessness, unwanted, bored and rejection due to their disability;
  9. choosing to remain deliberately isolated or operating within a closed disability cluster in fear of failure of the other people not understanding they form or mode of communication or language;
  10. fear of joining a career or profession related to disability, especially psycho-social disability, due to the existing stigma around disability.

 

Different categories of persons with disabilities express themselves differently due to their specific needs and accommodation requirements. Otherwise, the fears they express are almost similar.

 

The above expressions are real among persons with disabilities, their care-givers/parents and supporters. Persons with disabilities live with this experience on a daily basis. In many instances, these expressions or feelings change or oscillate from one degree of feeling to another depending on the situation or environment they find themselves in. Some environments are really hostile and depressing while certain environments are friendly and supportive. This is very essential to take note of in every situation where policy, legislative, administrative or emergency responses are being taken by the State and other key decision makers. If this aspect of the lives of different categories of persons with disabilities is missed, then all remains undone. Persons with disabilities will always continue to feel a sense of discrimination. This directly affects their mental well-being.

 

In any epidemic or pandemic like the current COVID-19, it is common for individuals to feel traumatised, stressed and worried. Just as indicated above on how persons with disabilities respond to different situations and environment, different people may respond to the COVID-19 pandemic differently. It is essential here to take note that the way persons with disabilities respond to their situations is similar to the way different people respond to a pandemic like COVID-19. Persons with disabilities, in addition to what they already experience and express themselves to as a result of their impairments, also express themselves the same as other people in times of pandemics. So, they face “double stress” therefore their fears are double.

 

At this point in time, let us look at the common responses people facing the COVID-19 pandemic in general face. The common responses or expressions people affected directly or indirectly by the COVID-19 pandemic may include:

  1. Fear of falling ill and dying.
  2. Avoiding approaching health facilities due to fear of becoming infected while in care.
  3. Fear of losing livelihoods, not being able to work during isolation, and of being dismissed from work.
  4. Fear of being socially excluded/placed in quarantine because of being associated with the disease (e.g. stigma against persons who are from, or perceived to be from, affected areas).
  5. Feeling powerless in protecting loved ones and fear of losing loved ones because of the virus.
  6. Fear of being separated from loved ones and caregivers due to quarantine regime.
  7. Refusal to care for unaccompanied or separated minors, people with disabilities or the elderly due to fear of infection, because parents or caregivers have been taken into quarantine.
  8. Feelings of helplessness, boredom, loneliness and depression due to being isolated.
  9. Fear of reliving the experience of a previous epidemic.

(Adapted from the IASC Reference Group on Mental Health and Psychosocial Support in Emergency Settings: Interim Briefing Note – February 2020)

 

Persons with disabilities who find themselves in situations of a pandemic like the COVID-19 experience the same responses as persons without disabilities. As already stated, these responses are additional responses, or aggravating responses to the already disability related ones. Therefore, their mental well-being is affected more. This has to be realised during the emergency response and strategy planning and development stage. It should therefore be seen to be implemented during the actions of awareness raising, screening, testing, quarantine, tracing and tracking, treatment and discharge. This exhibits confidence-building and assurance interventions to the affected at pre-quarantine, in-quarantine and post-quarantine stages. This will build confidence in people and we shall not experience anyone running away or going into hiding on suspicion of being positive.

 

As already discussed above, emergencies are always stressful, but specific stressors particular to COVID-19 outbreak affect the population. Such stressors include:

  1. Risk of being infected and infecting others, especially if the transmission mode of COVID-19 is not 100% clear.
  2. Common symptoms of other health problems (e.g. a fever) can be mistaken for COVID-19 and lead to fear of being infected.
  3. Caregivers may feel increasingly worried for their children being at home alone (due to school closures) without appropriate care and support. School closures may have a differential effect on women, who provide most of the informal care within families, with the consequences of limiting their work and economic opportunities.
  4. Risk deterioration of physical and mental health of vulnerable individuals, for example older adults and persons with disabilities,  if caregivers are placed in quarantine if other care and support is not in place.
    (Adapted from the IASC Reference Group on Mental Health and Psychosocial Support in Emergency Settings: Interim Briefing Note – February 2020)
     
    While we were looking at the above expressions which seem to suggest that COVID-19 is fierce and should scare people from seeking health care, which includes quarantine, we are actually on the contrary saying there must be interventions to encourage people to voluntarily avail themselves to the health system because all the services, including quarantine are safe. We therefore support the continuous call by the Minister of Health to boldly state that the interventions are SAFE. What sometimes scare many people, including persons with disabilities is false news about COVID-19 and its related services. Already the extreme fear for COVID-19 services and procedures is already a mental health issue which can easily be avoided.

 

There is a lot of false news and messaging going on in our communities. This news does not spare persons with disabilities and those who support them or work with them. In this case, the Ministry of Health and its working partners must heighten the awareness raising efforts especially around the false news circulating around the communities. When it comes to the communities, in order to avoid all fake news, the best is to stick religiously to the information which is being given by the Ministry of Health and its working teams. Listen to nothing else! Remember, the Ministry of Health says:

  1. Wash your hands frequently with soap and water. This is the usual soap we use for bathing in our day-to-day lives. There is no special soap for persons with disabilities.
  2. Use an alcohol-based hand sanitizer if soap and water are not available. This does not refer to the alcohol people drink in order to get drunk or intoxicated. It is certified by health experts.
  3. Avoid close contact with anyone showing signs and symptoms of respiratory illness such as coughing and/or sneezing. As persons with disabilities, this is also possible despite the challenge of always wanting to be close to persons who support us. Avoid those support persons with these symptoms and work with those others without symptoms. This does not mean that you have abandoned your beloved care-giver or favorite support person.
  4. Avoid touching your eyes, nose, and mouth with unwashed hands. Always wash your hands regularly with soap and water before touching your face. Sometimes, the type of impairment you have requires that you touch your eyes, nose or mouth regularly.
  5. When coughing or sneezing cover your mouth and nose with flexed elbow, handkerchief or tissue. On a serious note, what if you have been amputated from above your elbow? You are able to cough within the available space you have adapted to use when covering your mouth or nose.
  6. Cook all your meat and meat products thoroughly before eating.
  7. Avoid unprotected contact with live wild or farm animals.
  8. Avoid spitting in public.
    (Adapted from the Ministry of Health Guidelines)
     
    The above guidelines are easy to follow but they must be availed to persons with disabilities in appropriate and accessible formats. Persons with disabilities and their representative civil society organisations must demand for this. It is a human rights issue.
     
    As we conclude, we should realise that mental well-being is for all despite disability. Zambia should be known as a nation that promotes both physical and mental well-being among all its people. It stands firm on the motto “leave no one behind”. Therefore the physical and most importantly the mental well-being of persons with disabilities in this time of the COVID-19 pandemic must be a priority. It is very important for the government to ensure that psychological first aid, emotional support and counseling services are in place and effective. Such services should include specific skills to tackle the double stress or trauma persons with disabilities face in this era of this deadly pandemic. Proactive psychological first aid, emotional support and counseling services should always be in place at all times, and not only be called for during stressful and traumatic periods like this one. No!
     
    There must be a strong and effective pre-quarantine, in-quarantine and post-quarantine counseling mechanism that must be targeted to those infected directly and are being quarantined and those affected because they are in close relationship with the infected persons. The above outlined expressions or stresses require psychological first aid, emotional support and counseling services. No doubt! But the big question is do we have such services targeting the COVID-19 infected and affected persons? It is obviously no. Then it is worse for persons with disabilities.
     
    But, where is the Mental Health Unit of the Ministry of Health? This is the time we should have seen and heard the Unit leading the mental health and psycho-social mitigation intervention arising from COVID-19. Is it about capacity to provide and/or coordinate such robust services? Or is it about placing little priority on mental health and psycho-social support services by the government? This is the time to examine ourselves as a people, through a critical introspection by our government.
     
    Other questions that require urgent answers include: when is the Ministry of Health going to establish the Mental Health Council of Zambia as provided for in the Mental Health Act of 2019? The Mental Health Council should have been essential in contributing in the coordination of the necessary mental health and psycho-social support services at this time of the COVID-19. We need action today!! As we make this call to action, we would like to emphasize the position that DRW is essentially part of the consensus built in the country to rally behind President Edgar Lungu’s call to concentrate on prevention to avoid burdening the health care system with clinical cases of COVID-19.
     

Note: Disability Rights Watch is providing information adopted or adapted from the Ministry of Health, World Health Organisation and their working teams or networks.

 

COVID-19 does not choose whether with or without a disability!

Stay Safe: Stay Health and Stay at Home!

STAY HOME!

 

Wamundila Waliuya,

Disability Rights Watch,

April, 2020.

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