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living a life
Banging the rights-based drum

After fighting to get her autistic son released from a locked ward, Julie Newcombe could not
walk away knowing other parents were in the same boat. She talks about why an approach
based on human rights is needed, and an exhibition, Rightful Lives, which explores this

ometimes, it would be nice to go back catch-up with whatever the professionals
to the old days. The days when you decide should happen next. We are
Sstill thought, naively, that you would working to establish a rights-based
get proper help for your disabled child. approach and this objective is certainly
The days when you just assumed a big gaining momentum. In the meantime,
parcel of practical assistance and emotional visit the Rightful Lives exhibition (see link
support would land on your doorstep and at end). You won’t be disappointed.
everything would be OK. The days when
you weren’t beaten and exhausted. Human rights and home truths
It certainly was not like that when our As we move forward with establishing a
son, Jamie, was diagnosed with autism. rightful life for Jamie, we are looking at
Over the years, he has gained a few more Free again: Julie Newcombe’s son Jamie the possibility of finding him somewhere
medical terms after his name, but this has to live closer to us. This is something he
not made a lot of difference to that parcel designer, and counsellor, author and wants and he makes that very clear.
of help. We have had to fight for pretty parent advocate Mark Neary. The residential home where he lives
much everything along the way. Education, Rightful Lives aims to explore the now is at least an hour away. It is a lovely
benefits, the right care and therapy – it human rights of autistic people and those place with an amazing care team, but he
has been one continuing struggle. with learning disabilities. The exhibition is would rather be closer to us. That fits with
Certainly, there have been some good set up in a series of online rooms. his article 8 rights, under the European
people, such as individual teachers, care Some of the rooms hold exhibits Convention on Human Rights, to respect
workers and professionals, who have gone relating to specific articles in the Human for a private and family life.
above and beyond the call of duty to make Rights Act. For example, we look at the As a result, I have started looking at
a difference but, sadly, the system is set up “right to life” or the “right to freedom supported living … and that is a
to make an adversarial approach the norm. from inhuman and degrading treatment”. phenomenon in its own right. The thinking
Our biggest battle came when Jamie Other rooms look at “living life” and at behind it is summarised in article 19 of
was detained under the Mental Health people’s perspectives. Our last update the Convention on the Rights of Persons
Act at the age of 18. Changes in introduced the theme of “a day in the with Disabilities (United Nations, 2008):
medication and a distinctly punitive life”, where people could send us the
approach to behaviour management by story of their day. a) Persons with disabilities have the
his care team at the time resulted in him In an astonishing array of love, joy, opportunity to choose their place of
being admitted to a psychiatric unit. anger and grief, the exhibitors show how residence and where and with whom
Five hospitals, a broken arm and some it is possible to lead a truly meaningful life they live on an equal basis with others
questionable medication changes later, he when things go right and, equally, how and are not obliged to live in a
was discharged to a lovely home where he utterly appalling it can be when people do particular living arrangement;
has since thrived. not get the right help and their human b) Persons with disabilities have
While he was locked up, he was rights are ignored. access to a range of in-home, residential
regularly restrained, put in seclusion and Curating it was an amazing, wonderful and other community support services,
overmedicated. Yet I visited him and took experience as we received exhibit after including personal assistance necessary
him out into the community almost every exhibit which took our breath away. The to support living and inclusion in the
day by myself without any issues at all. dignity of individuals who have suffered community, and to prevent isolation or
Our experiences within the mental the greatest losses is heart-wrenching, segregation from the community;
health system were so damaging that I while the joy of those leading great lives c) Community services and facilities for
could not walk away once Jamie was free, and doing great things is infectious. the general population are available on
especially after it became obvious that so We firmly believe the only way to secure an equal basis to persons with disabilities
many other families out there have had or meaningful, lasting change for autistic and are responsive to their needs.
are still having similar experiences. people and those with learning disabilities
It became important to campaign for is to use a rights-based approach that holds The idea is that a person should live in
change and to support others going authorities to account when they break the their own home, alongside people with
through the same thing. I have been law. Sadly, authorities disregard the law whom they choose to live and be able to
involved in various projects and far too often and with apparent impunity. live inclusive community lives.
campaigns, but by far the most inspiring Individuals and their families and The Reach support for living standards,
and far-reaching has been the Rightful supporters need to be included in drawn up up by Paradigm, takes this Julie Newcombe
Lives online exhibition, which I co-founded decisions about their day-to-day life. They further and stipulates that people should
with Mark Brown, a researcher and web should be leading the process, not playing have the right to choose all of the

14 Vol 32 No 4 | Summer 2019 Community Living www.cl-initiatives.co.uk