NEW WAYS TO UNDERSTAND PERSONAL
ASSISTANCE: LESSONS FROM SWEDEN
Ciara Brennan
University of Iceland
Independent Living
WHAT IS INDEPENDENT LIVING?
California in the 1960s
PEOPLE IN CALIFORNIA WANTED…
• The same rights as other Americans
• Choice of where to live
• Control over their life
• Money to buy services
• PERSONAL ASSISTANCE
WHAT IS PERSONAL ASSISTANCE?
A pathway to independent living
People get money to pay for the
assistance they want
People can choose who works for
them
WHAT IS PERSONAL ASSISTANCE?
Everyday life:
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Getting up in the morning
Cooking
Going to school or work
Living at home
Friends
Travel
https://www.youtube.com/watch?v=hO
eGDUlqy_g
PERSONAL ASSISTANCE IN EUROPE
• Europeans studied at the University of California
• They learned about personal assistance
• Independent living came to Europe in the 1980s
THE UNITED NATIONS CONVENTION ON THE
RIGHTS OF PERSONS WITH DISABILITIES
• 147 countries have agreed
• The European Union agreed
ARTICLE 19: THE RIGHT TO LIVE
INDEPENDENTLY IN THE COMMUNITY
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Community living
Personal assistance
Choice
Independence
NOT MUCH HAS CHANGED SINCE
THE 1960s
California 1970s
Ireland 2012
12
NOT MUCH HAS CHANGED SINCE THE
1960s
NOT MUCH HAS CHANGED SINCE
THE 1960s
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Choice
Control
Independence
Deinstitutionalisation
Community living
BUT SOME THINGS HAVE CHANGED
• More people have personal assistance
• More people need support to manage personal
assistance
– Children
– People with learning disabilities
THE RESEARCH
• In Sweden
• Participants needed a lot of support with
personal assistance
• Mothers gave the most support
• Interviews
• I worked for an independent living organisation
WHY SWEDEN?
• The best for independent
living in Europe?
• A law for personal
assistance in 1994
• 16, 000 people have
personal assistance
WHAT WE FOUND
• Choice, control and independence were
important…
• But other things were just as important or more
important:
• Freedom
• A good life
• A normal life
WHAT WE FOUND
• Health and safety were
very important
• People wanted their
personal assistants to
have training and
education
WHAT WE FOUND
• People needed personal
assistance 24/7
• It took a lot of work to
arrange personal
assistance
• People had a lot of support
WHAT WE FOUND
The government and local
government used choice,
control and independence to
argue that some people
should not have personal
assistance
WHAT WE FOUND
• Some people felt
excluded from
independent living
because they need a lot
of support
• Some people wanted a
separate independent
living organisation
OTHER WAYS TO UNDERSTAND
PERSONAL ASSISTANCE
• Everybody we spoke to
had different
experiences
• Some people need a lot
of support
• Lots of responsibility
comes with having
personal assistance
OTHER WAYS TO UNDERSTAND
PERSONAL ASSISTANCE
What has been written is a
lot different to people’s
lived experiences
We listened to people’s
stories instead
People’s stories were more
complicated
QUESTIONS?