Blog post by: Stephanie Wooley, Deputy Board Member at the European Network of (Ex-)Users and Survivors of Psychiatry (ENUSP)
I remember when I first arrived in France 40 years ago as a foreign student. Everything looked very different compared to back home in the USA – a real cultural shock pursuing my dream to discover the world. Adjusting to differences, it occurred to me after walking around Paris that I didn’t see any persons with disabilities – blind persons with canes or persons in wheelchairs like had become more and more common in the States. I asked a few French students why and they explained of course not, these people were hidden away in their Paris apartments and “cared for”. They were unable to access the community and therefore it was normal they needed “care and protection” for their own good. It came as a shock.
Fortunately, with the disability movement and growing awareness of our right to equality, mentalities have changed since, with greater opportunities to access independent living services and mobility in many European cities, but with huge problems remaining and we must not allow the situation to stagnate as EDF points out. This is particularly true for persons with psychosocial disabilities still institutionalised regularly and lawfully in the EU under mental health laws automatically depriving them of legal capacity.
It is now time for society to gain a deeper understanding of how “institutions” segregate persons with disabilities and cut them off from their communities. Once segregated in a psychiatric hospital and then released, post-hospitalisation, recovery and rehabilitation options are sorely lacking. Younger and younger people with psychosocial disabilities are simply shifted from one institution to another – sent to retirement and care homes for the dependent elderly without any other option and with their “passive consent”. Likewise, for those who shift to a situation of dependency on sheltered work to access housing, which is not independent living. It can become a “vicious circle” of institutionalisation and the “revolving door” between them.
Yet there are many other ways to recognise our common humanity, equality, and the rights and contributions of all people.
Supported decision-making from a person of choice must become the rule, as seen and proven effective in the current Spanish reform and transition, particularly in Catalonia with Support Girona. Initiatives to provide alternative and stepwise housing solutions to transition to independent living based on the decision and preferences of persons in terms of level of support, such as with Lister in partnership with ENIK (Utrecht, NL) can be decisive in people’s lives. Successful programmes of this type are designed and implemented in a meaningful partnership early on with Organisations of Persons with Disabilities. Economic issues involving local dependency on institutions for employment and the retraining requirements of staff and guardians are dealt with.
The need for personal assistance for persons with psychosocial disabilities, particularly at home, often remains unrecognised or only recently recognised in Europe. When persons do have a home to return to after psychiatric institutionalisation, the adjustment can be very difficult involving trauma and loss. This is where mobile support teams slowly becoming more prevalent can be extremely useful to provide home support the person needs, on the condition they are not used as a surveillance mechanism to return people to institutions. Peer support in a variety of forms is essential and can make all the difference, on the condition it is not formatted by institutions by requiring years of training as “experts by experience” to comply with the status quo. Access to reintegration, therapy, support groups, legal support, employment and education opportunities can also be a form of restorative justice for victims of institutionalisation.
We see how a reduction of resources is leading to an increase of inhumane practices and human rights violations in institutions. EU impetus and funding for training, deinstitutionalisation, independent living, inclusion in the community and monitoring of progress are crucial. More time and resources to determine the will and preferences of all persons via clear and accessible information must be supported, including training for interpreters for persons requiring higher levels of support. Long-term and sufficient financial support for our representative organizations is also a pre-requisite to success.
These positive efforts can lead to preventing institutionalisation in the first place with persons with disabilities who live alongside persons without disabilities everywhere, as full members of the community – a “virtuous circle” where the rights and support needs of persons with disabilities are respected and fulfilled. EDF’s report will provide a pathway forward for the EU and policy makers to guide and support Member States and accession countries in this direction.
About ENUSP
ENUSP (European Network of (Ex-)Users and Survivors of Psychiatry services across Europe a way to communicate so that we can support one other in the personal, political and social struggle against injustice and discrimination.
It is grassroots umbrella organisation working across Europe to unite local and national organisations of (ex-)users and survivors of psychiatry.