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end to institutions
Our people must be free

Activist Simone Aspis reports on a campaign with two aims – to stop
people being locked up in assessment and treatment units purely because
they are disabled and to make friends with those detained in institutions

hirty months ago, I was repeatedly and understand the communication needs as laws that allow our peers to be locked
contacted by an inpatient in an of autistic patients and those with up in these institutions with no regard for
Tassessment and treatment unit learning difficulties. their human rights.
(ATU) , who asked me to be her advocate One person I met said: ”Often I have
– on the basis that I am disabled and found that IMHAs have no training in Peer treasure
campaign for disabled people’s rights. autism and therefore cannot relate and are The campaign is based on the successful
“Oh crikey,” I thought, “What do I know unable to fully understand my point of view. rights campaigns of the 1970s when many
about the mental health system, the law “For example, when requesting for disabled people lived in large institutions
and how it all works?” I knew nothing, reasonable adjustments to be made during with no control over their lives. Peer
other than watching a few of these ward rounds, I wanted the information in a support was at the centre of much of
dreadful programmes exposing the horrible written format from the doctor before we this work.
abuse that goes on in such institutions. met and I wanted time to ask questions One former ATU patient comments on
Since then, it has been a roller-coaster and ensure I fully understood what was the value of peer advocacy: “The biggest
ride, dealing with mainly the downs of the being communicated – this request wasn’t advantage is that the person can fully
mental health system while trying to arm fully understood and supported by either relate to the person they are supporting
myself with the legislation and policies to the doctor or the IMHA. It transpired that as they share the same or similar
advocate for patients’ release from these this was because I was perceived as not condition. This cannot be overestimated.
institutions. requiring this communication adjustment.” “So many times in hospital people would
I received help from WISH, a voice for say, ‘I know how you feel’ and this really
women’s mental health, where a lovely isn’t true unless you’ve been in the same
A peer can be the very
and supportive disabled advocate who was “ or similar position, which most had not.”
also a qualified independent mental health person you need to remind Peer support can also be empowering
advocate (IMHA), helped me with some of – when you can’t see any light at the end
the challenges of dealing with the system. you that you can do it and of the tunnel, a peer is sometimes the
Getting involved in the anti-ATU online you can make it very person you need to remind you that
community, I realised the level of ” you can do it and you can make it.
disempowerment many inpatients There are disabled people including ATU
experience despite having a legal The Free Our People Now campaign is survivors who would like to go into
entitlement to independent mental health led by people with disabilities. Its aim is to institutions and advocate for their fellow
and capacity advocates. get disabled people, particularly those peers. Many of them, including myself,
Inpatients, including one who was with learning difficulties and autism, out want to have training and be part of a
15 years old, asked for advocacy support, of psychiatric hospitals and ATUs, while supportive community. We need your
which could be anything from attending campaigning for their closure. help – we need money to bring disabled
meetings to arranging care and treatment The campaign has two aims. The first is to people together and get the training and
reviews and community care assessments. work strategically to prevent thousands of support we need to help us Free Our
people from being locked up in institutions People Now. n
Hands tied as a result the of government’s attack on l For more information, contact Simone
There is an issue about mental health our inclusion in society. We want to do this Aspis at simone@changingperspectives.
advocacy services themselves. IMHAs and by campaigning for an overhaul of mental org.uk
other hospital-based services are health and capacity legislation so that it is l To donate, go to www.justgiving.com/
commissioned by the hospitals and compatible with the UN Convention on campaign/free-our-people-now
therefore questions have been asked about the Rights of Persons with Disabilities. The l www.simoneaspis.co.uk
their independence. Sometimes the ultimate aim is that disabled people can no
advocate’s hands are tied by ward staff who longer be detained solely on the grounds of Simone Aspis is a disabled person acting
can be interfering and ignore their points, disability, which is the case with both the as an advocate for detained inpatients
which defeats the point of advocacy. Mental Health and Mental Capacity Acts. with learning difficulties and autism who
Advocacy needs to be more structured, Second, we will inform our strategy by want to be released from psychiatric
and made easier for advocates to support making friends in institutions, an approach hospitals. She has more than 20 years’
patients, and without having to go through adopted 30 years ago by the disabled experience campaigning for disabled
ward staff who may be the subject of the people’s independent living movement. people’s human and civil rights, working
patient’s complaints or feedback. Through my advocacy work, I am for People First, the United Kingdom
IMHA advocates often do not have the gaining first-hand experience of what Disabled People’s Council, the Alliance for
necessary skills and training to work with needs to change at a strategic level, such Inclusive Education and Not Dead Yet

12 Vol 33 No 1 | Autumn 2019 Community Living www.cl-initiatives.co.uk