By Jolijn Santegoeds, 9 December 2020
The roll out of a vaccination programme actually offers the opportunity to reach out to each citizen, to check if every person is okay, and to offer support where needed. The process of administering or inviting each person for vaccination, could be used to identify other needs simultaneously, e.g. by adding other professions or dimensions to the vaccination roll out, such as mechanisms for poverty relief or screening for other needs, turning the vaccination roll out into a hybrid holistic health protection programme.
As a result of the pandemic and pre-existing situations, people may be exposed to very hard circumstances and conditions, and have other pressing needs besides a vaccination. Currently, the vaccination process could offer a window of hope to people in need, from victims of domestic violence to those facing poverty, from persons subjected to coercion to persons left in unbearable neglect. People may actually be hoping to find relief out of urgent problems their lives. It would be painful if the vaccination team would just leave after giving the vaccination, giving the impression that a life was saved, while leaving the person under circumstances that need urgent remedy.
Health extends beyond vaccination The vaccination process could be strengthened by adding other expertises, and focus on saving lives holistically. In fact, a holistic approach to health should be the norm. The WHO constitution states: “Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” The UN CRPD calls for the removal of barriers that hinder full participation. In addition, the current situation under the covid pandemic demands taking action on many levels to protect the health of the population as a whole . Community based services and mental health programmes have been disrupted while people suffer under the impacts of covid . To really safeguard health, the vaccination process should reach out further than just the medical model, and encompass sensitivity to other needs as well.
Sensitization to individual needs
The vaccination process could e.g. be sensitive to spot personal needs regarding poverty, domestic violence, loneliness, disability and support, household, unemployment, broken business, housing needs, education needs, discrimination, cyber bullying, suicidal thoughts, substance abuse, etc. In institutions specific attention needs to be given to human rights abuses such as the use of restraints, solitary confinement, forced drugging, forced ECT, detention in institutions, and other practices that are in violation of the UN CRPD. Human rights violations must be brought to an end immediately. In this way, the vaccination team could become a rescue team, and the social approach to vaccination could bring us closer to a world with human rights for all.
The vaccination process gives the opportunity to reach out to those who are in need, and enable community based support. It could e.g. start with a questionnaire to spot people in need, or promoting a help line to mobilize support, or providing direct support or referral to specialized supports services and resources.
The needed attention to individual free and informed consent to vaccination, as well as realizing a decision making support mechanism to ensure free and informed consent of persons deprived of legal capacity or liberty, would already mean a sensitization to the social context of the person concerned prior to vaccination. On top of that, a further social approach must be added to the vaccination process, to ensure every citizen is safe, and nobody is left behind with unmet needs.
While governments invest in damage control to the business sector, there is a clear need to also invest in supporting people everywhere to fulfill their basic needs and to prevent harm to their health, including mental health and suicide prevention . To support each life, regardless of the type of needs, would be an act of equality and non-discrimination.
Holistic health protection
And while covid spreads sadness and fear, people hang on to the hope that times will get better, and that the world will build back better post covid. A holistic health protection programme would reflect a fuller notion of the right to life and the diversity of needs. A vaccination roll out twinned with a proactive outreach programme aimed at providing supports where needed, could actually save lives, and increase resilience, and may as such give the feeling of hope, emergence, growth and new possibilities towards overcoming hard times. A holistic health protection programme, connecting the vaccination process to the identification and relief of urgent needs, could potentially reach the most marginalized, those furthest behind, or those who may not be able to find support on their own. Such a twin track approach is practical and useful for sustainable development.
Moving to a better future
Especially now, it is important to bring out humanity’s best side, and do more and do better. Fighting the pandemic is not only the work of health care professionals, it is a job of us all, to ensure that every person is well. Nobody has to be jobless if they are willing to support another. Also, modern technologies offer new possibilities of remote support and remote monitoring. With concerted efforts based on the UN CRPD, nobody should have to live in an institution, and certainly not be tied up or coerced. The burden of the lock down measures can be spread more equally. It is time to make efforts for the freedom and the rights of persons with disabilities on an equal basis with others.
The vaccination process offers a window to reflect on approaches to health protection. The vaccination roll out could be used to simply administer injections under the medical model of covid. Yet, the actual health needs of the populations are going beyond a vaccination only. So when the vaccination process will need to be sensitive to individual needs anyway, then why should it not be fully sensitive to the diversity of actual needs, and take a holistic health approach, fully supportive of the right to life of each individual, regardless of the type of needs, and starting with those in the most disadvantaged positions.
Economic crises in the past decade have been met with huge economic responses, where governments invested large sums of money in e.g. the banking sector, airlines, etc. to “save” these business entities. This was often at the expense of austerity cuts to the provisions for persons with disabilities, who were left to suffer without proper support while the exorbitant high incomes for company management remained in place. And the human rights violations in institutions and in the community towards persons with disabilities have continued to exist, while the rest of society was enjoying an economic recovery. Yet, economy should serve the people, and not the other way around. Economists should use their skills to foster development, instead of using economy against us.
Now the world faces a humanitarian crisis, and we demand an equally big investment in humanitarian support. Every life is worth saving. It is time to reach out to those who are in the most horrible conditions. For example the situation in Bulgarian “social care homes” cannot be left unremedied any longer, and the plan to close these institutions by 2027 is by far not enough, as that is obviously an unacceptable time for persons to be tied up in metal chains! Immediate release is needed, in every country in Europe. Nobody should live in shackles. All over the world people are freed by NGOs from shackling. Europe must do the same. 2021 should be the year of liberation from the pandemic, yet also from endemic human rights violations against persons with disabilities.
The vaccination process and the covid pandemic as a whole force us to think about what it means to have a life, and what it means to save a life. Even before the covid pandemic, the UN CRPD urged states to take action to end the marginalization of persons with disabilities. The current humanitarian crisis only increases the need for humanitarian investment.
The fact that the world can actually change is unfortunately also illustrated by the covid pandemis, and moreover the world’s response thereto. It is now time for the awareness that we can and must do better to protect the lives of persons with disabilities. The vaccination process could be a starting point to ensure eveyone has a life worth living.
What if the vaccination teams would really comprise a social rescue team? Could we make the world a better place?
About Jolijn Santegoeds
EDF Board of Directors, Jolijn Santegoeds is a user/survivor of psychiatry. Despite the fact that the Netherlands is not considered as the most problematic country in the area of mental health services, Jolijn had to face a range of forced and degrading practices when she was 16 years old. The institution that hosted her forced her to isolation through others. Jolijn’s main activities are aimed at stimulating alternatives to forced treatments and the prevention of torture and ill-treatment in health care. In the context of the Dutch law reform on forced psychiatric interventions, she developed an alternative model, called the “Eindhoven Model”, which is based on using Family Group Conferencing for supported decision-making to avoid forced psychiatric interventions. In 2014, Jolijn Santegoeds became a Board member of ENUSP for the Northwest region. She is also a co-chair of the World Network of Users and Survivors of Psychiatry (WNUSP), which aims to secure the rights of persons with psychosocial disabilities everywhere around the world. Since May 2017, she has been elected in the EDF Board of Directors.