co-production Disability

Co-productive partnerships network blog – guest post

‘The potential of co-productive partnerships with parents/carers’

Why co-production?

As a team of researchers invested in critical disability studies, inclusion and ‘all matters SEND’ in different capacities (researchers, parent/carer, practitioners), we were inspired to create a welcoming and productive space where the meanings of co-production could be discussed between parents/carers and practitioners in Education, Health and Social Care sectors (EHC). Having created this ‘safe, inclusive’ sphere for our pilot project into co-productive partnerships, we were overwhelmed with our participants’ response to this opportunity. It became clear that the potential of co-production has not gone unnoticed to the participants in the pilot study with participants sharing their understanding, experiences and critical reflections of co-production; moreover, we discovered that there are many practitioners and parents/carers who are keen to engage with co-production to explore its impact in their individual settings and contexts. Although the pilot study is still at the final stages of data collection, the preliminary emerging themes suggest that Cahn’s pillars of co-production are, indeed, what the partnerships may benefit from to ignite a change in practice. Cahn (2000) defined these pillars as:

  1. Treating all contributors as an asset in the community of practice
  2. Fostering culture of reciprocity where practitioners in the field need ‘service users’ as much as the recipients needs the service.
  3. Enabling the ethos of building cultural capital of all contributors, despite the varied knowledge, expertise, and skills they might be inputting into a joint effort to meet the needs of the community of practice.
  4. Directing the collaborative work towards a social change that creates a transformation of practice that results in social justice.

We agree that these pillars target a significant shift in current ways of working in partnerships; however, as we describe below, these partnerships are in urgent need of an extensive change to address the power distribution between practitioners and parents/carers and establish more inclusive and socially just collaborations.

The current state of partnerships with parents/carers

The concept of partnerships with parents and carers has been discussed for more than four decades within academia, professional practice, and policy contexts. Despite an array of publications and government inquiries urging for more participatory and inclusive partnerships with parents and carers to support a better understanding and aid a more effective planning for support, these partnerships remain unequivocally problematic. The All-Party Parliamentary Groups’ (2021) report which followed the global pandemic, once again, confirmed how unsuccessful and detrimental the public services are in building relationships with families to provide an adequate support for them. Whatever measures have been trialled and implemented in practice recently, they continue to fail those of us in the society who are labelled as ‘different’. While some would argue that ‘the true measure of any society can be found in how it treats its most vulnerable members’ (Ghandi, n.d.), we argue that it is necessary to recognise how ‘different’ families come to be seen as vulnerable within society, whilst simultaneously paying attention to the expertise within their lived experiences, and how this experiential knowledge can enable more inclusive partnerships and more effective support in practice.

What will it take to ignite change, not only in people’s minds, but also in people’s hearts?

Some of the data from our pilot study suggests that the change in people’s assumptions and attitudes is more powerful in changing practice than shifts in legislation alone. Likewise, evidence of this change in practice is argued to be the main factor that could ‘convince’ the policy makers of the potential this change can have on global contexts. Moreover, some participants in the pilot study have asserted that the emphasis should be given to the affective dimensions of partnerships, as well as the particular structure and resources within which they are constructed. The values of inclusion, reciprocity, humanity and respect need to be amplified before the performative measures that often shape the partnerships in practice (e.g., assessments, interventions, capacity of services, etc.). This shift in priorities isn’t, however, aimed at disregarding the reality of available resources – it is necessary to create a change in everyone’s perceptions about the value of human relationships in the world where those relationships are often dehumanised and can amount to impersonal exchanges where value is given to statistics, ‘tick boxes’, forms and presumptions made by practitioners. We hope that by enabling that change in perspectives, resources will be allocated according to needs, rather than needs being allocated according to resources. Likewise, we are becoming increasingly convinced that by engaging in co-productive partnerships, the pernicious divide between ‘them and us’ within partnerships will be addressed and provide a platform to create more spaces where conflict could be disarmed and replaced with inclusive dialogue.

Furthermore, by enabling the parental stories to become influential upon the trajectory of the mentioned partnerships, we believe, practitioners in the field will be able to consider their own assumptions about ‘difference’, perhaps even giving a way to treating it as a variation of humanity, rather than any type of deficiency (Garland-Thompson, 2005).

Can co-production provide an alternative worth trying out?

Despite the compelling principles and potential for a societal change in partnerships working, co-production isn’t flawless – it is an often undefined concept and requires a great shift in traditionally embedded practices.

However, at times where proposed frameworks for partnerships refer to parental advocacy as a ‘terrorist behaviour’ we believe, there is a greater imperative than ever to seek and trial alternative frameworks, to prevent further damage to families and the children who have been ‘forgotten, left behind and overlooked’ for far too long by the policy makers, public services and us as a society (see figure 1 below). We think it demonstrates how, more than ever, we need urgent discussions about how to generate more positive and productive relationships, where parents are neither blamed nor demonised for wanting support that meets their child’s needs.

Therefore, we invite you to engage in the continued evaluation of a proposed framework for co-productive partnerships with parents/carers (Fleming 2021) (see Figure 2 below).

Figure 1 Framework for working with parents presented by Natalie Hanna, Headteacher, at a Whole School SEND webinar on the 14th of October 2021. This has subsequently been retracted by Whole School SEND who have apologised that this was presented and have confirmed that this framework is not a Whole School SEND approach to working with parents, whose voice should be valued.

Figure 2 Framework for co-productive partnerships (Fleming, 2021)

If you would like to take part in an inclusive dialogue about the future of partnerships with parents/carers please join us on the 8th of November for our first meeting of Co-productive Partnerships Network, register here:  Follow us on Twitter @co_productive #IgnitingChange

Dr Katarzyna Fleming, Leeds Beckett University

Sharon Smith, University of Birmingham

Dr Antonios Ktenidis, Leeds Beckett University

Disability Postgraduate study

Down syndrome as Pure Simulacrum

I am pleased to be able to share a link to a journal article that I have co-authored: Down Syndrome as Pure Simulacrum

Unfortunately this article (like many academic articles) is behind a journal paywall, which means if you do not have university access you cannot read it. The journal has, however, given us permission to share it with anyone who is a parent/carer of a child or young person with Down syndrome, or indeed people with Down syndrome. Please email me if you meet this criteria and would like a copy. We will also attempt to write an Easy Read version of the article as soon as possible.

The main premise of the article is that there is a dominant negative/deficit narrative surrounding Down syndrome, and that it is such a powerful and all encompassing image that it also incorporates the more positive cultural representations that are frequently celebrated, for instance by parents or in marketing campaigns. As a result, we argue that these positive images simply reinforce the negative images because image alone is not enough for there to be change. We contend that instead it is necessary for a more complex, more real engagement with people with Down syndrome to take place, and that we need more cultural representations that reflect this.

A couple of years ago I had the great pleasure of watching Sarah Gordy in Jellyfish on the stage. It was a captivating but also challenging performance. We discuss this play, written by Ben Weatherill, in the article, as an example of the type of cultural representation we feel is needed – a representation that does not easily become absorbed within the image of Down syndrome that we might have in our heads if we do not know someone with the genetic condition. A representation that affects the audience, makes us stop and think and recognise that the image we have does not reflect the real lives of people with Down syndrome – the discrimination and assumptions they face, the desires they have, the way they would like to live their lives.

Our intention is to challenge the pervasive image that persists, calling for greater inclusion and presence of real people with Down syndrome in culture and society.