What is ‘Lived Experience’?
Put simply lived experience is expertise gained from having a specific life experience, which provides unique insights that must be valued. This ‘context expertise’ contrasts with academic or ‘content expertise’, much like how professionals in organisations have educated knowledge that others may not have, people with lived experience have experiential knowledge that most do not have. Everybody has their own lived experience. Examples of people with lived experience expertise depends on the context and will likely include:
- First Nations peoples [Graphic design bullets into blocks]
- People from a culturally and linguistically diverse background
- People with a disability, mental ill health or other chronic or severe health issues
- People who have experienced poverty, unemployment, underemployment or unstable housing and homelessness.
- People who have experienced violence or recovering from trauma.
- Young people, older people, single-parent families.
- Lesbian, gay, bisexual, transgender and intersex individuals and communities.
- People living in rural and remote communities.
“A person is the sum of all their yesterdays, appreciating today and planning for their tomorrow’s. The whole is greater than the sum of the parts, this toolkit will only influence positive outcomes if it is used extensively the way it has been designed.”
– HOME Lived Experience Advocate
The Need for Lived Experience Co-Design and Engagement
A consistent theme that emerged from the HOME lived experience advocates was the current lack of input for and co-design with people who have lived experience into the systems, services and organisations that currently operate in the areas of housing, homelessness, the wider community sector and Government. This can be summarised as a deficit of lived experience engagement and input in the areas of:
- Service and program delivery [Graphic design bullets into blocks]
- Policy, legislation, and regulation
- System design
- Advocacy and campaigns
- Media coverage and public speaking
Lived Experience Story: Jai – Lived Experience Mentoring and Training
Jai immigrated to Australia several years ago due to unrest in his home country and seeking a better life. Unfortunately, due to language and cultural barriers, and a long-standing injury he was unable to find sustained work and lived in insecure crisis and transitional housing struggling to financially and mentally cope.
A friend connected him to the support of some community organisations, and he quickly overcame those personal and professional barriers and found stable income and a rental tenancy in affordable housing. Jai then decided he wanted to give back and support others who are experiencing similar issues. He decided to apply to be part of a community organisation’s lived experience mentoring program and now he is paid to co-facilitate weekly workshops for migrants adapting to their new lives and avoid the housing and job insecurity he experienced.
Jai feels proud that his contributions have improved the organisation’s program that has supported their service delivery and people that have experienced what he went through.
Case Study: Youth Affairs Council WA (YACWA) – Youth Homelessness Advisory Council (YHAC)
The Homeless Youth Advisory Council (HYAC), now called the Youth Homeless Advisory Council (YHAC) (as young people involved did not want to be defined by their homelessness) was formed at YACWA. With support from the WA Alliance to End Homelessness to provide a young person lived experience perspective to co-design and contribute towards the development of an action plan for State Government to end youth homelessness.
YACWA advertised and recruited for the roles, and the selected council members were brought on as casual staff. With a mix of different lived experiences of homelessness, the group have brought an essential voice of younger people into the WA sector community, enabling YACWA and other organisations to ensure positive outcomes for young people are achieved. The group participated in action lab co-design workshops, have conducted design research, and undertook an overview of the homelessness service landscape through a ‘service safari’.
Through its great work amplifying the voice of younger people, HYAC members have found being part of the group to be professionally and personally developing; and the wider WA community sector have found YHAC to be significantly important in policy, service, and advocacy developments and efforts.
More Information: https://www.yacwa.org.au/youth-leadership/yhac/
Benefits and Barriers to Positive Lived Experience Co-Design and Engagement
It is critical to understand the benefits and barriers that come with lived experience co-design and engagement before commencing, to ensure you avoid the barriers, know what you are trying to achieve, and create a beneficial experience for all involved. It is important for organisations to be fully aware of the impact that poorly executed involvement has on all parties, as well as know what positive involvement looks like and the benefits it brings to outcomes.
Benefits to people with lived experience
In terms of the benefits for people with lived experience when they are involved in co-design or being engaged with, there are unquestionably many positives for people when it is done correctly, this can be in the form of deep professional and personal beneficial outcomes as shown below.
- Balancing and sharing of power.
- Connection and mutuality.
- Understanding, hope and trust.
- Personal and professional development, and in some instances, recovery from issues.
- Recognition for their value, experience, and unique expertise.
- Ownership, responsibility, equality, and reciprocity.
- Confidence, self-esteem, and connection to community.
- Ability to navigate systems and processes.
- Employment prospects.
- Develop new skills and knowledge such as public speaking, writing, policy knowledge, advocacy techniques etc.
- Connect, network, and represent others.
- Receive support in a variety of ways.
- Explore creative expression and/or to contribute and give back.
- Be part of positive and more sustainable changes to services, policies, regulations, and legislations.
Benefits to Organisations:
It is recognised that the more people and user interests are integrated into an organisation’s design and work processes, the better the outcome for organisations. The benefits of meaningful lived experience engagement are well documented in research and have been identified by HOME lived experience advocates. These benefits are seen to extend to all involved – organisations and people with lived experience. There are numerous established benefits that emerge from positive lived experience engagement shown below:
- Gain credibility among people experiencing the issue.
- Identify problems and opportunities in services.
- Access diverse experiences, skills, fresh ideas, and perspectives.
- Increase opportunity for more creative or innovative projects and activities.
- Reduce consumer resentment or suspicion of funding decisions.
- Increase understanding of people’s needs.
- Increase capacity to navigate difficult situations.
- Contribute significantly to positive workplace culture, particularly in improving recovery orientation and reducing prejudicial attitudes.
- Improve awareness of changes in the community that can impact on consumers.
- Support better and more sustainable outcomes.
Barriers for Organisations
There may be are several concerns, questions, misconceptions, illiteracies, and roadblocks for organisations considering co-designing and engaging with people who have lived experience. Organisations must critically analyse why they believe whether they are constrained in pursuing genuine lived experience involvement. If not, then there must be clear communication about what involvement can realistically be achieved, with a conscientious effort in implementing best practice (through the guidance of this toolkit and resources recommended in Part 7) to ensure the barriers below are avoided.
- A lack of resources to meet the investment and remuneration required to support meaningful involvement.
- A lack of capacity and/or time to support meaningful involvement (staff or appropriately trained staff).
- A lack of certainty around how to engage and achieve outcomes. Co-design and engagement seems too complex or time-consuming.
- A lack of belief in the abilities and confidence of people with lived experience to contribute effectively or provide measurable benefits.
- A lack of organisational culture and empathy that is supportive of engagement with people with lived experience and consumers.
- A lack of understanding of the benefits that engagement will bring to the organisation.
- Feel unsure how to avoid paternalistic or tokenistic approaches to engagement.
- Feel uncertain of what sharing power brings, set against a growing culture of safeguarding, blame and risk aversion.
- People have unrealistic expectations of what can be achieved.
- People with lived experience are or may become unable to commit to the project. How do you find people willing and able to get involved?
- Co-design with lived experience is recognised as being morally right, but is it any more than that? Is this just a fad?
Barriers for People with Lived Experience
A key barrier to all engagement is the numerous barriers that people with lived experience face. It is crucial that organisations understand and put in place strategies to address the barriers for people with lived experience may face before considering any engagement. The following is a list of barriers as identified by people with lived experience and evidence-based research:
- Facing stigma, discrimination, and a lack of empathy.
- The significant (real or perceived) power imbalance between lived experience and organisations.
- Discomfort in sharing experiences or providing input.
- Fear of no confidentiality, support, or past traumas being triggered.
- A lack of meaningful remuneration and consistency from the organisation.
- The competition, conflict, or disagreement with other lived experience advocates.
- Low self-esteem or confidence in effectively and positively being involved.
- Not knowing about the lived experience and consumer participation activities or projects, or not having the training needed to participate.
- Organisations being unreceptive or not listening to lived experience feedback and input.
- Not knowing how information or input provided was going to be used or feeling that nothing would change as a result.
- Personal circumstances – such as how someone is feeling, their capacity to attend, travel costs, living arrangements, or other commitments.
- Information can be:
- difficult to understand or unclear – such as the use of jargon or technical terminology, unknown or complex systems and processes.
- overloaded or lacking to effectively participate.
- Cultural barriers for Aboriginal people and people from other cultural backgrounds.
- Atomisation and isolation – being a solitary lived experience representative.
Overcoming the Barriers Together
Throughout this toolkit and the recommended resources in ‘Part 6’ detail how the barriers to lived experience co-design and engagement can be overcome, and ultimately how to proceed in a positive and effective way through approaches and processes. But broadly, lived experience advocates have outlined how it is done:
- “Less talk – more listening and action”.
- “Organisations must commit significant resources, renumeration, and time when partnering with us – but the outcomes are worth the effort.”
- “More clear intention, expectation, and communication from start to finish”.
- “Genuine engagement is not pressured volunteering with no boundaries. It is being paid appropriately for every hour of work and input given.”
- “More kindness, trust, empathy, and sharing of power from leadership of organisations and government”.
- “Active support in both our professional and personal circumstances”.
- “We need more opportunities, employment, funding, training, and resources that has longevity to support best practice lived experience engagement”.
- “We want to be accepted, understood, and cared for – but also empowered and treated as an equal”.
- “Sufficient facilitation, support, and feedback processes to accommodate people’s particular and complex needs is essential”.
- “Our stories and input are our intellectual property, it must be recognised and treated as such”.
- “The unique skills and knowledge of people with lived experience being properly utilised and all levels of the system or organisation”.
- “No tokenistic, paternalistic, or unconscious exploitative engagements. All stigmas and dispositions have to go out of the window”.
- “Trust people with lived experience to solve organisational issues and find solutions”.
- “Don’t even start anything with people who have lived experience or are consumers if you are not truly dedicated to best practice and lack the knowledge of our rights and of how to co-design.”
What does inadequate Lived Experience Co-Design and Engagement look like?
In addition to the barriers and general lack of opportunities for people with lived experience to engage with organisations, in sectors where opportunities do exist, there is often a danger that these engagements have been and can be inadequate in a variety of ways that can negatively impact people and organisations.
There are many reasons how and why involvement of lived experience can lead to inadequate outcomes. Typically, a lack of understanding or clarity about lived experience and the context and parameters of the engagement process creates risks for lived experience co-design and engagement being absorbed and co-opted into traditional ways of working, diminishing their impact, and creating issues in the engagement.
Below are a few ways this materialises:
- Paternalistic, tokenistic, extractive, or exploitative approaches to people.
- Disempowering – there is an unwillingness to share power with or create space for people.
- Patronising, condescending, sanctimonious, or superior attitudes when dealing with people.
- Difficulty to manage tensions between traditional research and work practice and lived experience perspectives on appropriate solutions.
- Cannot accommodate the necessary extra time and resources.
- Being lied to, ignored, and/or misled.
- Using or exploiting people consciously or unconsciously to ‘tick a box’.
- Negative perception of people with lived experience and the value of their input.
- Treating people with a pre-disposition towards the stigmas of experiencing issues such as homelessness, which can be re-traumatising (i.e. they must not be a good or capable person, it is their own fault, their experience is an inevitable part of life etc.)
Diversity of Lived Experience
Everyone has lived experience through their own lives, and everyone’s lived experience is diverse and different. There is no right, or wrong experience, and all experiences bring different perspectives that are equally important. It is also true that no two people’s lived experience’s will be identical, even if they have some experiences in common, such as homelessness.
“People are individuals that have but are not defined by their lived experience – people are not just what they have been through in the past. We must respect everyone in their diversity and have no pre-conceived judgements.”
– HOME Lived Experience Advocate
For the purposes of a co-design or engagement it is important to think about a specific area of expertise that is needed by an organisation or service provider (e.g. lived experience of rough sleeping, public or private housing eviction etc.). Lived experience diversity also includes but is not limited to the cultural, age, gender, ability, and other considerations. But organisations should not take a mechanical or criteria approach to diversity and inclusion, which can result in multiple, unrelated interventions that will not address the most critical issues and absorb resources without any measurable and sustained impact to desired outcomes.
Because inclusion references the lived experiences of everyone, the most effective methods of engagement must be organised around people experiencing inclusion rather than simply, tick-the-box checklists. A holistic and integrated approach to diversity and inclusion minimises resistance, avoids program overload, and improves the return on investment for organisations utilising the expertise of lived experience, by directing efforts to initiatives that will have the largest impact.
Lived Experience Advocacy
Lived experience advocacy, sometimes known as consumer advocacy is an area that emphasises the uniquely valuable perspective of people whose expertise is gained from having a specific life experience. Lived experience advocacy is based on the principle that people have a right to be included in decisions that affect them, including about processes or services that affect their housing situation. Contributing to the development of your community is an internationally recognised human right.
A lived experience advocate is someone with lived experience of housing insecurity and/or homelessness and who:
- Gives advice about issues that affect them; e.g. may help plan a new program, policy, set service priorities, participate in projects or advise on ways to improve services. [Graphic design bullets into blocks]
- Advocates for the rights of people to services and government, especially the needs of marginalised groups, such as women, ethnic, sexual and gender minorities, people with disability or mental illness.
“…Recognizing that advocacy development is a comprehensive economic, social, cultural and political process, which aims at the constant improvement of the well-being of the entire population and of all individuals on the basis of their active, free and meaningful participation in development and in the fair distribution of benefits resulting there from…Human rights based participation is an important tool to empower people living in poverty by allowing them to exercise their voice to influence relevant decision-making processes.”
To be an effective lived experience advocate, a person needs adequate information about the organisation, issue and/or service they are working with. To support this involvement Organisations must actively facilitate and support this and provide appropriate opportunities (discussed later) to contribute.
Different Types of Lived Experience Advocacy
A number of different types of advocacy exist. The strength of each advocacy type depends on how well the individual, group or organisation’s advocacy efforts meet the key elements expressed in the definition of advocacy.
|Self-advocacy||Self-advocacy refers to an individual’s ability to effectively communicate their own interests, desires, needs and rights. It recognises that people are experts by their own experience and involves them in speaking out for themselves about the things that are important to them.||“I speak for myself”|
|Individual advocacy||Self-determination is the right of a group of people to have full power over their own lives.
Self- determination starts with the basic ideas of freedom to design a life plan, authority to control some targeted amounts of resources, support that is highly individualised and opportunities to be a contributing citizen of the community
|“I will support you to speak for yourself”|
|Systemic advocacy||Systemic advocacy is the process of representing and advocating for the needs and interests of a group of people for changes or improvements in services, government policies and community.||“I speak for members of my peer group”|
Grace is a mother and grandmother, having lived in the suburbs and worked in retail most of her life, her kids moved interstate and after some time she experienced domestic violence whilst living with her new partner and was forced to leave. After sleeping in her car and occasionally couch surfing at a friend’s place for a number of months, she then found women’s refuge who could support her recovery and transition to her own housing.
She was recently asked to join a community sector peak body’s new lived experience bureau made up of people with lived experience of domestic violence to mentor others with lived experience; and share their unique story and perspective of lived experience to increase understanding of the issue and promote positive strategies for recovery and wellbeing. Grace is supported and provided training with peers by professional staff and prepare their presentations to suit the audience.
Grace loves to inspire and advocate, seeking to help create the positive change needed for other women to never experience domestic violence and associated issues such as homelessness. She finds from this experience that she has better recovered from her trauma and helping others do the same has helped her regain her confidence and happiness. She feels this experience will also assist him in future employment.
The Peer Education Support Program (PESP) is a volunteer program that provides people who have experienced homelessness with the opportunity to improve the service system. PESP team members play a key role in promoting the benefits and transformative power of consumer participation in service system and policy development.
An example of the work undertaken by the program is their work as key advisors to the City of Melbourne ‘StreetCount’. The City of Melbourne local government in partnership with a variety of community organisations have conducted StreetCount, with the intention of improving the understanding of the population of people experiencing homelessness in the City of Melbourne and to assist them in developing new pathways into secure housing.
The PESP team were crucial to achieving positive outcomes as they worked as key advisors throughout the StreetCount from both a practical and philosophical standpoint. This came through unique advice to the City of Melbourne in its processs as well as sharing their stories of rough sleeping with volunteers during training, which helped give meaning and purpose to the StreetCount.
Their generosity and honesty helped give meaning and purpose to the StreetCount. PESP members and also worked to promote the event with homelessness support agencies and participated in the StreetCount itself.
More Information: https://chp.org.au/services/pesp/