Independent Living Movement and Personal Assistants

What is the relevance of the Independent Living Movement when it comes to personal assistance and the appointment of a Personal Assistant (PA)?

Firstly, I think it is important to understand what independence means in the context of independent living. This quote from Simon Brisenden sums it up well.

“Independence is not linked to the physical or intellectual capacity to care for oneself without assistance; independence is created by having assistance when and how one requires it.”

Simon Brisenden, Independent living pioneer

The European Network on Independent Living (ENIL) states that “Independent Living does not mean we want to do everything by ourselves and need nobody or that we want to live in isolation.” Independent living is “about having the freedom of choice and control over one’s own life and lifestyle.” 

If you’re unfamiliar with the Independent Living Movement, I thought it would be helpful to outline how it began and its relevance to Personal Assistants.

Where my interest stems from

I first noticed the Independent Living Moving as a social work student in the mid-1990s when Professor Jenny Morris OBE was our visiting lecturer at Keele University. Professor Morris was a passionate advocate of using research and evidence to influence disability policies in the thirty years leading up to her semi-retirement in 2010.

Until that point, my care experience was working mainly with older people.  It wasn’t until I heard Professor Morris talk I realised disabled people also can live independently in the community with support. That got my attention and made me want to find out more about it.

With this in mind, I became interested in working with disabled people.  My first job after qualifying as a social worker was working within the Local Authority Children with Disability Team.  After various roles all within social care, it’s no coincide that my current role is working for the Independent Living Fund Scotland assessment team.

Independent Living Movement

Connection with the black civil rights struggle

The first thing to remember is that the origins of the Independent Living Movement is tied in with the black civil rights struggle and with other movements of the late 1960s and 1970s. Both the Civil Rights Movement and the Independent Living Movement were born out of the need to get rid of the appalling treatment of individuals because of bigotry and stereotypes.  Particularly when it hindered the ability to access housing, education, transportation, and employment.

To put a stop to this poor treatment of others, the two movements used very similar strategies and tactics.  Mainly the formation of community-based groups of people with different disabilities who could work together to combat these issues.  These groups came educate their wider community and influence policymakers at all levels.  The purpose was to bring about a change in regulations and introduce barrier-removing legislations.

Introducing Ed Robert

I cannot find an exact date when the Independent Living Movement started, but many say the movement was born on a day in 1962 with Ed Robert, a quadriplegic and a student at the University of California at Berkeley. Together with fellow disabled students, Ed started the Disabled Students’ Program, a resource for those with disabilities run by disabled people. They called themselves the “Rolling Quads”.

For the University of California, it was a defining moment in history.   Not only was Ed the first disabled student at attend the University, he was also spearheaded the first Disability Student’s Program in any US University.  They designed the purpose of the Disabled Students Program to assist students with disabilities so they can have equal access to all programs and activities within the University.

The Independent Living Movement in the UK

The Independent Living Movement in the UK started in the late 1970s.  Here disabled people drew inspiration from Ed and the US.

In 1979 residents at an Institution in Hampshire, formed a group called Project 81 (to reflect the UN International year of disabled people in 1981).  The purpose of the group was to plan their ‘escape’ from residential care.

Their intent was to live in the community and take control of their support by employing their own personal assistants. They took three years to make it happen. In 1984 Project 81 formed the first centre for Independent Living in the UK.

In 1984 a gentleman called John Evans, using funds received from his Local Authority, took control of his own support.  John became the first person in the UK to employ a Personal Assistant.

For disabled people in the UK this was a real milestone.  Suddenly they could lead normal lives without being in residential care.  In addition, it reduced the reliance on public services.

A legacy that lives on – the Independent Living Fund

Introducing the Independent Living Fund was born out of the Independent Living Movement within the UK. 

The government set it up in 1988 to give disabled people the opportunity to choose their own care.  Sponsored by funding from the Department for Work and Pensions, the Independent Living Fund continued (in various guises) to run until the Government closed it in 2015.

A legacy that lives on

Despite the closure of the Independent Living Fund, the Independent Living Moving provided a legacy that lives on today.

Let’s remind ourselves that:

  • The black civil rights movement provided a foundation for the Independent Living Movement in the US.
  • Ed Robert attending the University of California as the first severely disabled student set a historical precedence.  By creating the Disability Student Program this set an important foundation.  It gave disabled students equal access to learning opportunities and facilities.
  • In 1984 within the UK, we had our defining moment in history.  John Evans was the first disabled person to employ a Personal Assistant.

In summary, it gave disabled people the first real opportunity to take control of their own support.

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