Co-Production Stories Summaries

Introduction and Early Experiences as a Carer
The speaker, Jackie Darlington, introduces herself as a mother to two sons, one of whom, Joshua, is 31 and has Down syndrome, autism, and limited speech. She realised she was a carer soon after Joshua's birth, an experience that initially led to isolation. She became determined to advocate for Joshua, challenging refusals and seeking explanations. This marked the beginning of her journey as a carer and advocate.

Professional Life and Career Changes
Jackie's experiences led her to become a teaching assistant in a special needs school and later a foster carer. She eventually moved to the East Midlands and worked as a seco in nurseries before realising she could no longer balance work and caring for Joshua. This led to her giving up her job and home, forcing her to navigate the system again. She highlights the differences in how each local authority operates, a fact not immediately apparent. She emphasises the need to be assertive in securing the best possible support for her son. After some volunteer work, she returned to paid employment.

Involvement in Co-production
Jackie's involvement in co-production began after moving to the East Midlands through the parent carer Forum. This led to meetings with local authority personnel and educational psychologists, particularly during the launch of the education, health and care plan. She was heavily involved initially but stepped down when Joshua moved into a different age group.

Experiences of Racialisation in Co-production
Living in a predominantly white area, Jackie recounts an incident where she was told she "ticked a box," implying she was included for diversity purposes rather than her individual merit. This made her question whether her involvement was due to her skills or the colour of her skin. She decided to participate only in roles she felt genuinely committed to, regardless of any potential "tick-box" motivations. While she believes perceptions have changed over time, she still feels the need to justify her presence and contributions. She feels she doesn't have the same opportunities as her white peers and has had to fight for everything she has received.

Experiences of Discrimination
Jackie shares an experience where she felt discriminated against regarding the management of direct payment money for Joshua. She confronted the individual involved but avoided using the word "race" initially, preferring "discrimination" to avoid being labelled as the "angry black woman." She has learned to anticipate and preempt potential discrimination, sometimes removing Joshua from services she deems inadequate. She researches and secures better alternatives, presenting them proactively to counter claims of limited options.

Impact on Well-being and Mental Health
Facing discrimination has taken a toll on Jackie's well-being, making her feel vulnerable. She no longer participates in anonymous surveys from the local authority, fearing identification based on her ethnicity. She sometimes deliberately identifies as Black British to ensure her feedback is recognised as coming from her. She feels that the system is set up in a way that makes it easy to identify individuals, even when anonymity is supposedly guaranteed.

Current Co-production Spaces and Support
In her current co-production roles, Jackie doesn't feel race is a significant factor, except when understanding how policies might affect different racial groups. She is involved with Impact, Health Watch, and Carers UK, among others. She believes carers need accurate information to make informed decisions. She founded a group for adults with learning disabilities, ensuring it is multicultural and inclusive. Despite initial scepticism, the group has thrived, promoting choice and social inclusion for its members.

Challenges Faced by Disabled People from Racialised Communities
Jackie notes that disabled people from racialised communities face additional challenges due to cultural factors that can limit their opportunities. Cultural and religious needs must be considered when planning activities and trips. She is often the only Black person from her region in national co-production initiatives. She acknowledges the difficulty many carers face in finding respite care to attend meetings and events. She is fortunate to have a strong support network, but recognises that not everyone is so lucky.

Changes Needed for More Inclusive Co-production
To make co-production more inclusive, Jackie believes there needs to be greater awareness of different cultures and more outreach to those communities. She suggests bringing co-production activities into those communities rather than always expecting people to come to them. She also questions the diversity of co-production facilitators and the need for cultural competency. She notes the underrepresentation of people from minority ethnic backgrounds in co-production spaces, even at a national level.

Experiences of Being a Minority in Co-production Spaces
Jackie believes her opinions are valued in the co-production groups she is currently involved in. However, she has left other groups where she felt uncomfortable or where her challenges were dismissed. She acknowledges the need to choose her battles as a carer. She believes that if a white person challenged something in those spaces, their concerns would be taken more seriously than hers. Her contributions have sometimes been minimised or ignored in meeting minutes.

The Impact of Systemic Racism
Jackie reflects on her upbringing in the 1960s, where she was taught that she had to be better than her white peers to succeed. She has seen this play out in her own life and in the experiences of her eldest son. She believes that race still influences opportunities, even if it is more subtle than in the past. When she challenges subtle forms of racism, her concerns are often dismissed or minimised. She recounts an incident in McDonald's where her family was stared at, highlighting the everyday racism they face.

The Emotional Toll of Discrimination
Dealing with constant discrimination is exhausting and emotionally draining. It is particularly difficult when her experiences are denied or dismissed. She believes younger generations will find it even harder to navigate these challenges. She notes that discrimination is often subtle and difficult to prove in court. She describes instances of microaggressions and exclusion that are hard to challenge directly.

Entitlement and Power Dynamics
Jackie believes that some people think they have more entitlement and power than she does, but she doesn't believe they actually do. She has left workplaces due to discriminatory comments, feeling unsupported by others. She believes that people often hear discriminatory remarks but choose to ignore them, using the excuse of "you know what I mean."

Support in Current Co-production Spaces
Jackie feels supported in her current co-production groups and believes that people would stand up for her if she experienced discrimination. These groups are aware of her cultural background and disability-related concerns. She advocates for accessibility, such as easy-read versions of documents. She challenges jargon and complex language, ensuring that information is understandable to everyone.

Hopes for the Future of Co-production
Jackie hopes that co-production will become the norm, embedded in everything we do, rather than being a separate entity. She envisions a world where everyday language is used for everyday people. She acknowledges the need for specialist roles, such as creating easy-read materials. She recognises the difficulty in engaging people from racialised communities who may feel marginalised or victimised. Language barriers also pose a challenge. She suggests that those who feel disillusioned may need to seek support and opportunities outside their local area, as she did by engaging with Carers UK.

Systemic Failures and Lack of Information
Jackie recounts an experience where she was incorrectly charged for Joshua's prescriptions due to a lack of information and systemic failures. She had to navigate a complex process to claim the money back. She highlights the importance of accurate information and support to prevent others from falling through similar loopholes. She concludes by expressing gratitude for the conversation and acknowledging the emotional toll of these experiences.

Summary of Co-production Transcript

The transcript explores the racialised experience of co-production, focusing on the challenges and impacts faced by individuals from global majority backgrounds. The discussion highlights issues of systemic racism, power dynamics, and psychological safety within co-production spaces.

Experiences of Racism in Co-production

The individual describes experiencing various forms of racism in co-production settings, including:
<ul>
<li>Stealing of ideas and having them presented as "improved" versions by individuals from the global minority.</li>
<li>Being cut off during sentences and talked over.</li>
<li>Feeling unsafe to express opinions, particularly those related to colonialism and historical context.</li>
<li>Experiencing microaggressions and subtle forms of discrimination.</li>
<li>Having their words twisted or misrepresented when documented in collaborative platforms like jam boards.</li>
</ul>
The individual notes the difficulty in navigating these spaces, often feeling the need to protect themselves by turning off their camera to avoid being observed while experiencing racism.

Impact on Mental Health

The constant exposure to racism has had a significant impact on the individual's mental health, leading to a state of hypervigilance and exhaustion. They equate racism to a form of violence, assault, and abuse, comparing it to the trauma of rape and being forced to work alongside the abuser. This has resulted in long-term mental health issues and a heightened sensitivity to discriminatory behaviour.

Psychological Safety and the Lack Thereof

The transcript emphasises the importance of psychological safety in co-production, but highlights the reality that many spaces are not truly safe for individuals from global majority backgrounds. The individual expresses fear of speaking openly due to potential negative reactions, such as "white tears" derailing conversations or others dominating the discussion. They also note the lack of compassion and understanding from some participants when sensitive topics are raised.

Historical Context and Pushback

The discussion addresses the resistance encountered when raising the historical context of race, racism, and imperialism in co-production spaces. The individual believes that many people are not ready for these conversations, as they challenge existing power structures and comfort zones. They draw parallels between the lack of global concern for suffering in countries with predominantly people of colour and the widespread condemnation of events affecting white populations, suggesting that "white pain matters more".

Complicity and the Need for Change

The individual argues that people of colour are often complicit in upholding whiteness and white supremacy due to fear of losing their jobs and homes. They call for a united front and a strategic approach to dismantling these systems, suggesting that compassion alone is not enough. They propose convening meetings exclusively for people of colour who truly understand the issues to develop effective strategies for change.

Strategic Recommendations for Improvement

The individual offers several strategic recommendations for improving co-production and addressing racism within organisations, including:
<ul>
<li>Rejecting funding from sources that support oppression and genocide.</li>
<li>Affiliating with organisations that align with anti-racist values.</li>
<li>Creating sustainable ways of working that empower people of colour.</li>
<li>Ensuring that leadership includes individuals with lived experience of racism.</li>
<li>Adopting a business-like approach to reform and change, rather than relying solely on compassion.</li>
</ul>

Microaggressions and Cultural Sensitivity

The transcript also touches on the importance of cultural sensitivity and addressing microaggressions in co-production spaces. The individual shares an experience of feeling unable to eat comfortably with their hands at an event due to the lack of permission and the presence of cutlery, highlighting how seemingly small details can impact psychological safety.

Moving Forward

The individual expresses a desire to continue the conversation and work collaboratively to create meaningful change. They emphasise the need for spaces where racialised people can come together, share their experiences, and develop strategies for dismantling systemic racism. The conversation concludes with an agreement to collaborate on sharing the individual's story in a way that promotes positive change.

Summary of Co-production Experiences of a Bengali Woman

This transcript captures a conversation exploring the experiences of a Bengali woman, Yasmin, in the realm of co-production. Yasmin, a public patient representative on the NIHR Academy and a co-producer at the UCL Coro Collective, shares her insights on co-production, diversity, and inclusion.

Defining Co-production and Initial Experiences

Yasmin defines co-production as <em>working in equal partnership for mutual benefit</em>, involving all stakeholders throughout the entire process. Initially, she found co-production intriguing, realising the significance of her voice and perspectives, which were often overlooked in traditional settings. She notes the richness that diverse ethnic backgrounds bring to the table, fostering a sense of unity.

Challenges and Cultural Considerations

Yasmin discusses challenges related to her racial and cultural identity in co-production spaces. She often finds herself as the only non-white person, leading to dietary needs (halal) not being catered for during in-person meetings. She also addresses the need for cultural competency among her peers, dispelling presumptions and assumptions about her background as a Muslim woman wearing a headscarf. Despite these challenges, she enjoys sharing her culture and knowledge, viewing it as an opportunity for mutual learning.

The Potato Analogy and Diversity

Yasmin introduces her potato analogy to illustrate the concept of diversity. She explains that a single bag of potatoes (representing an issue or topic) can yield diverse outcomes when shared among people from different backgrounds. This highlights the value of bringing various perspectives to the table.

Experiences Compared to White Peers

Initially, Yasmin had to establish her reputation and demonstrate her capacity. Over time, her voice and perspectives gained recognition and were taken seriously. She often vocalises the concerns of unheard voices within her community, particularly those facing language or other barriers to participation in co-production.

Instances of Exclusion and Discrimination

Yasmin shares a disheartening experience of being repeatedly declined for an annual training opportunity within an organisation, while a white colleague she had trained was consistently selected. She felt the criteria seemed to favour white individuals, despite her qualifications and experience. This led her to believe that the organisation was missing out on valuable knowledge and perspectives by not embracing diversity.

Strategies for Tackling Racism and Oppression

To address racism and oppression in co-production spaces, Yasmin suggests training workshops and hands-on activities. She recounts a positive experience with a Lego-based activity that fostered communication and relationship-building among participants. She emphasises the importance of creating a space where individuals can bring their authentic selves and engage in open dialogue.

Representation and Inclusivity

Yasmin notes the lack of representation of Bengali individuals in her co-production experiences, although she has encountered other South Asians. She points out that facilitators are rarely from the South Asian community. She stresses the importance of advertising co-production opportunities through appropriate channels, such as WhatsApp and word-of-mouth, to reach ethnic minority communities who may have trust issues with traditional advertising methods.

Progress and Future Directions

Yasmin believes that co-production has made significant progress in embracing diversity. She highlights the relevance of including diverse voices in research to ensure its applicability and impact. She suggests implementing competency tests on racism before individuals join co-production groups, providing training to those who lack understanding. She acknowledges the sensitivity of discussing racism and the need for a mediator to facilitate difficult conversations.

Addressing Apprehension and Building Relationships

Yasmin expresses that she feels no apprehension in sharing her experiences due to her trust in the interviewer. She emphasises the importance of building and sustaining relationships in co-production, moving beyond transactional interactions. She believes that leading by example can inspire other women from her community to get involved in co-production.

Vision for the Future of Co-production

Yasmin envisions co-production becoming the standard approach for all organisations, fostering equality and collaboration. She highlights the significance of relationships and trust in achieving successful outcomes.

Legacy of Colonialism and Slavery

Yasmin acknowledges that discussions about the legacy of slavery and imperialism are rare in co-production spaces. She believes that educating and training individuals on these topics is a long-term process. While the youth are more informed and enthusiastic, guidance is essential to channel their enthusiasm effectively.

Navigating Sensitive Topics

Yasmin cautions against dwelling on historical injustices, as it could create friction and division. She suggests focusing on present-day issues and promoting equality and understanding.

Learning Opportunities and Positive Change

The interviewer outlines the intention to use the interviews to create learning opportunities for making co-production more inclusive and anti-racist. The goal is to support individuals in leading co-production initiatives and fostering positive change.

Facilitation and Inclusivity

Yasmin praises a facilitator, Nick, for her openness and ability to make everyone feel comfortable and included. She contrasts this with other projects where she felt singled out due to her ethnicity. She recounts instances of her ideas being overlooked until a white person rephrased them.

Recognition and Contribution

Initially, Yasmin had to work harder to have her voice heard and her contributions recognised. However, she is now recognised for her expertise and dedication. She prioritises the completion of tasks and the addressing of issues, even if she does not receive credit for her work.

Final Thoughts

Yasmin expresses her appreciation for the conversation and her desire to collaborate with the interviewer in the future. She emphasises the importance of incorporating co-production principles into funding applications and research projects to ensure their relevance and impact.