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Inclusive Communities = Stronger Communities
GLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITY
The Swensons’ story
Charlie Swenson does not communicate in traditional
ways and has significant support needs. His family
and support team, based on their deep knowledge of
who he is, what he likes and does not like, work
together to articulate Charlie’s decisions. His mother,
Sue knows the dangers of guardianship—of having
one voice speak for Charlie—and believes in the
need for a collective approach to ensure that
although Charlie doesn’t communicate his decisions
the way others do, his decisions are still his. This
was evident in the way the Charlie’s family and
support team helped him find his own place in the
community.
Charlie informed the family he was ready to move
out on his own. Charlie, who uses a wheelchair to
move around, had taken to wheeling himself to the
front door and knocking on the back of it. People
who do not know Charlie might not have understood
what he was communicating—or that he was
communicating at all. But the Swenson’s knew, and
so began a long journey to find appropriate housing
in the community for Charlie. A possible roommate
was quickly found. On paper it was a great match.
The families knew each other, shared similar values
and a commitment to inclusion, the young adults
knew each other and got along well. But there was a
hitch. Charlie liked Opera and he liked it loud. His
potential housemate didn’t and preferred a quiet
living environment. Under guardianship, or if less
care and consideration was given to Charlie’s will, it
would have been easy to have the two become
housemates. However, through supported decisionmaking
and a dedicated family, the Swenson’s knew
this would not be the decision Charlie would make
for himself. So they went on a new search until they
finally found a house that Charlie can call home.
making and the lack of legal mechanisms to
enable supported decision-making. The
history of families making these decisions is
an uneasy one. We know the vast majority of
families are driven by love and their desire to
“protect” their sons and daughters. Yet,
under the name of protection, individuals are
being denied their rights. Families are often
led to believe that “protection” is best
secured through substitute decision-making
arrangements. In many countries there is
little experience or understanding that
people with intellectual disabilities can make
their own decisions. Particularly, for people
with significant challenges in communicating
in traditionally understood ways, it is difficult
for others to see how a person can make
their own decisions. As we witness the rise in
self-advocacy movements around the world
we are seeing people with intellectual
disabilities challenge stereotypes and
traditional assumptions. They are pushing
for change and leading the way forward.
They are challenging “protectionism” and tell
us they want to make mistakes and learn
from them like people without disabilities.
They are demonstrating that with support
they can make their own decisions.
Despite the fact that Article 12 obliges
governments to develop supported decision
making models, formal recognition of
supported decision making exists in only a
very few countries and is not always well
understood by families, professionals or
communities. Supported decision-making is
an approach to decision making that can be
used when an individual needs help to make
decisions in their lives. Supported decision
making recognizes that everyone makes