We find ourselves in crucial times: Disability Voice newsletter introduction by Jolijn Santegoeds, EDF Board Member.

We find ourselves in crucial times: Disability Voice newsletter introduction by Jolijn Santegoeds, EDF Board Member.

Welcome to the Disability voice newsletter.

As EDF’s board member on behalf of the European Network of Users, ex-users and Survivors of Psychiatry (ENUSP), it is an honor to introduce you to this edition of the Disability Voice which is dedicated to the theme of mental health.

We find ourselves in crucial times…

The sound of an alarm bell

The COVID pandemic is affecting the world, and the need for psychosocial support is visible in all parts of the community, from youngsters to the elderly, from women and girls to migrants, from persons with disabilities to entrepreneurs. Mental health affects us all, and the pandemic has brought this to the spotlight.

With sadness we note that suffering has increased tremendously in virtually all layers of the community. Barriers have become higher to obtain the right type of support, and the most vulnerable people with psychosocial disabilities became even more vulnerable, such as homeless people, children, persons in institutions, or people with high or complex support needs. Inside psychiatric hospitals, the situation has worsened due to lockdowns, confinement of patients and sobriety by stripping of so-called ‘non-essential services’. Locked doors, understaffing, over medication and neglect are still mainstream features across Europe in institutions. In many places, the monitoring of services has stopped due to COVID regulations. Overall, it gives the impression that “mental hospitals” have lapsed even further into the past century, and have become hidden places of deep suffering again.

The increased suffering at present times rings like an alarm bell. The provision of psychosocial support cannot be postponed any longer.

 Europe stands at a crossroads.

In Europe’s past, the focus of mental health services has traditionally been put on segregation of persons with psychosocial disabilities in institutions, but the UNCRPD is bringing change, and puts deinstitutionalization and ending coercion at the heart of rights-based services. This implies that community-based support must be realized to foster inclusion. All over Europe, providing social protection and an adequate standard of living is a challenging move away from traditional notions of mental health and ‘madness’. The shift from exclusion to inclusion is already visible in many pioneering initiatives like the first flowers in spring.

The European landscape of mental health services is slowly entering this paradigm change informed by human rights. The old paradigm approach which used to view people with psychosocial disabilities as ‘incapable’ is outdated and new concepts on support have popped up here and there in Europe. Disability does not justify the deprivation of rights. Coercion is not support. The human rights based approach focuses on supporting persons to overcome barriers to access their rights and be included in the community on an equal basis with others. This means that forced institutionalization and forced treatments need to be ended and abolished. Discriminatory laws and practices need to be replaced by a human rights based framework. This paradigm shift is a long-awaited milestone in European history.

Challenges remain plenty.

Outdated approaches based on deprivation of rights due to the presumed ‘incapacity’ of persons with psychosocial disabilities are still embedded in many laws in states across Europe. Nowadays the Council of Europe’s Draft Additional Protocol to the Oviedo Convention echoes that same old tune, regardless of the higher standard for human rights enshrined in the UN CRPD. And after many years of opposing the draft, EDF and its members have launched an international campaign “WithdrawOviedo”, which calls on the Council of Europe to “Drop the Draft” and establish a framework recommendation based on the UN CRPD. We want Europe to be a champion in human rights for all people in the world.

New approaches of psychosocial support are emerging and give rise to diversified services to support persons with psychosocial disabilities in realizing their goals and choices in life based on their own will and preferences. The enjoyment of legal capacity, liberty, safety, freedom from abuse, and a right to social protection and personal development are crucial building blocks for a human rights based approach. Several guidance documents on ‘good practices’ are being developed worldwide, and the most prominent is the WHO Quality Rights Toolkit, which offers a comprehensive programme to foster change with a human rights based approach in mental health care and services for psychosocial support, along with recent guidance on implementing these types of services for policy makers.[1]

Europe should be a role model in the implementation of the UN CRPD. European funds cannot be used to sustain human right violations, but should be used to realize human rights based support, notably including the realization of support to live independently and being included in the community on an equal basis with others. Deinstitutionalization is a key development to reallocate efforts and funds to community based support for persons with psychosocial disabilities.

No walls, no chains

The proliferation of coercion and institutionalization must be halted. The discriminatory exclusion based on presumed ‘incapacity’ and presumed ‘dangerousness’ of persons with psychosocial disabilities resembles the dynamics of systematic racism, which cannot have ground in Europe. There cannot be a division between ‘valid’ and ‘invalid’ people. We need to tear down the walls between people. Human Rights Watch launched the campaign “break the chains” highlighting the needs of hundreds of thousands of men, women, and children across 60 countries who are chained, simply for having a mental health condition. This happens because of stigma, fear and government failure. Together, we can help end this inhumane practice.

A big push is needed to remind European authorities of their duty to uphold human rights, and to ensure that the European interpretation of human rights is not of lower standard than the global standards of international human rights. ENUSP is grateful for the support given by EDF and allies to make the case together to stop human rights violations against persons with disabilities and to push for a world where everyone can be part.

I hope this edition of the Disability Voice newsletter will inspire you,

A critical side-note regarding World Mental Health Day

You may know that on 10 October annually, World Mental Health Day is celebrated worldwide to raise awareness on mental health issues. There are positives and negatives to this event. Every year in October, we see that outdated concepts continue to be put forward by service providers who promote stereotypes and incapacity-models, which have a negative impact on public opinion. For example, words like “early intervention” can be explained in various ways when there is no clear ban on forced interventions, making it a slippery slope. The status quo usually has more media power, pushing the voice of (ex)users and survivors of psychiatry to the margins again. This can be a painful reminder of the remaining workload involved in our advocacy. For this reason, World Mental Health Day can evoke mixed feelings.

As a matter of fact, a human rights awareness day is held annually on 3 December, World Day of Persons with Disabilities, which celebrates the UN Convention on the Rights of Persons with Disabilities. Within the disability movement, coercion-free support is the norm by consensus, and ‘World Disability Day’ may therefore provide a better option to exchange knowledge on the future of psychosocial support.

[1] See: https://www.who.int/publications/i/item/who-qualityrights-guidance-and-training-tools and https://www.who.int/news-room/feature-stories/detail/community-based-mental-health-services-using-a-rights-based-approach.