The Power of Lived Experience

The Power of Lived Experience

Guest Blogger: Faye Savage 


When I deliver my personal development and career development training to disabled people they don’t always feel

that as disabled people their experiences are valuable or valued. Yet, their lived experiences make them an expert in their own right on disability related issues.


As a life coach and trainer I often see their lived experience as enhancing their employability and leadership skills. So, I invited Faye Savage, ECDP’s Lived Experience Officer to explain what lived experience is and how valuable a collective voice can be. 


ECDP is a disabled people’s user led organization based in Essex which I have had the pleasure to work with on many leadership programmes over the years.


The Power of Lived Experience


My role as Lived Experience Officer for ecdp is a fairly unique one, which is not easily summed up. Put simply, I work with disabled people inEssex to ensure their voice is heard on the matters which affect them.


Lived experience is the expertise that all disabled people acquire through their day-to-day experiences of being a disabled person. Taking a social model perspective, it includes people’s experiences of accessing society as a disabled person, overcoming some of the barriers involved and managing an impairment and achieving independent living. The important part of this is expertise – disabled people are experts.


At ecdp we run a range of services to enable disabled and older people in Essex to achieve choice and control. Members of ecdp may use one or all of our services at various points in their lives but we stay in touch with all of them through our email bulletin, ecdp magazine, website and social media (including Twitter, Facebook and YouTube).


The trusted relationship which results from regular contact through personalised services and regular communications puts ecdp in a good position to work with disabled people to collect and utilise their lived experience, which we do in a number of ways and on a number of topics.

By taking a lived experience approach, ecdp draws on the experiences, perspectives, opinions and ultimately the expertise of many individuals; and turns this into a collective voice. It is this collective voice which makes lived experience a valuable asset – an asset which makes disabled people powerful.


Employing a lived experience approach enables our members to influence not only the way we work, but also have a say in the issues which affect them.


For ecdp, it has been vital to ensure lived experience is a two-way process; members are engaged in the whole of the journey their lived experience makes, from its original submission from the individual, to sharing the work it informs and the impact it makes. This allows disabled people to influence our work at all stages.


A good example of the influence a collective voice can have is some work we undertook based on lived experience last year. An ecdp colleague was contacted by a member who had been told they could not pay a PA through Access to Work if the PA used their own car. This meant that using taxis was her only option, meaning her support was less personal and also more expensive. Firstly we established that this was not an isolated case by finding other members who were affected and we worked to understand the impact of this change for them, both in terms of cost and in terms of impact on the support.


We spoke to Access to Work colleagues, policy officers at the Department for Work and Pensions, staff at Department for Transport, and to licensing officers working acrossEssexin order to establish the facts. Drawing this together we published a lived experience report which was covered by both local and national press.


Following this, the Government reverted to their previous guidance, recognising the lived experience of disabled people and demonstrating how powerful a collective and constructive voice can be.


Looking forward, the Government’s discussion on the new disability strategy, Fulfilling Potential, ends next week. ecdp has been working with disabled people inEssex to ensure their lived experience underpins our response.


This is a huge opportunity for disabled people to tell the Government about the barriers they face and how they think they can be tackled. It is not about focusing on what disabled people cannot do, but about what disabled people could do in a society which better meets their needs and supports them to fulfill their potential. It is only by sharing lived experience and converting it into a collective voice that this society can be created.

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