co-production Disability Random musings

Anyone for ice-cream?

Written for Making Chromosomes Count: (reproduced here)

Parental advocacy for disabled children and young people is a thorny issue. An issue that requires careful consideration and thought, especially as the young person approaches adulthood, and it is an issue we are having to currently navigate for our 17 year old daughter who has Down syndrome. This is new to us, as we did not have to think through what our role is as our son’s parents, as he approached adulthood. Now 20 years old, he can make all of his own decisions and can decide how and when to ask us for input or support. Of course, as he still lives at home he has to abide by the house rules (we do not have many!) and as his parents we no doubt do – and will continue to – offer unsolicited advice. However, that is the extent of our role now he is an adult.

Advocacy is a daily task, for most families with relatives with learning disabilities, most of the time (Walmsley et al., 2017).For our daughter, our role as her parent advocates is likely to be more involved and for a longer period of time in a way that the majority of parents who have ‘non-disabled’ children do not experience (Ryan & Runswick-Cole, 2008). When a disabled young person approaches adulthood, families frequently have to continue to advocate for them within a complex and fragmented service system, a situation which demands both time and resources in advocacy efforts (Carey et al 2020, p7).

So how do we get the balance right between what we think is best for her, and what she thinks is important to her? If there are tensions and disagreements, who should get the final say? How can we ensure that we are promoting her priorities, rather than our own? How do we ensure that we are not limiting her future because of our limited imaginations? These are just some of the thoughts I have been grappling with over the last couple of years.

Parents as allies or obstacles?

Parent advocacy and activism has played an incredibly important role, for example at a collective level parents of disabled children and young people have been involved in setting up services and support groups or campaigning for the rights of all children to have an education, or on an individual level, fighting for services, challenging assessments, sorting personal budgets or sharing their stories on social media or blogs to raise awareness of challenges they and their children face (Walmsley et al., 2017).

However, it is not a given that parental advocacy and activism is always a positive thing, especially if it works to silence the voices of disabled people. Carey et al discuss some of the ways that parents might act as a barrier for their young person, including how parents:

  • can enter into negotiations with professionals with their own experiences and concerns at forefront of mind
  • might talk to other parents and this is how their views about what is possible or desirable are shaped, rather than speaking to disabled people
  • can imagine different futures to the one their child wants, only being able to ‘see so far’
  • can be risk-averse, focussing on protection
  • can be ableist in their understandings, for instance of what independence looks like
  • being present might suggest the disabled person lacks capacity to make their own decisions

Introducing the pink ice-cream van

From as early as planning for secondary school, we were keen to start putting our daughter’s wishes and interests at the centre of our parental advocacy. We were fortunate to be able to take part in a PATH person-centred planning session for her, where she was able to imagine what her future might look like within a collaborative approach bringing together her friends, family, teachers and support staff from school. At the time she wanted to both work with animals and live at Paultons Park with her best friend. She has since gone on to imagine a range of possible futures, including driving a pink ice-cream van and giving out ice-creams to everyone as she doesn’t want people to have to pay for them. Her current vision is back to working with animals, and she still wants to live with her best friend but this time in a mansion with a swimming pool, and a never ending supply of McDonalds!

A few years ago we made a pledge that we would always keep the pink ice-cream van in the plan, by which we meant we would never try to limit her vision of what she wanted in her future. Whilst the ice-cream van might no longer be in the plan, the principle of this remains…

Some closing thoughts…

To draw this to a close, I would like to leave you with some final reflections:

  • There are no simple one-size-fits-all solutions. Neither parents nor their disabled children are a homogenous group. So you need to do the work, to find out what is best for you and your child, and what your role as a parent advocate can and should be.
  • There are range of tools available to support person centred planning, which give an output that can be used as the basis of parental advocacy for instance PATH, What matters island, or Perfect week. Some young people will need more support than others to engage with these processes, but they are a great way to document what is important to them, providing us as parents as a useful reminder!
  • Wherever possible, the disabled child or young person’s ‘voice’ should be prioritised and not drowned out. However, it is important to recognise that ‘voice’ is not equally available to all and some disabled young people may need high levels of parental advocacy throughout their lifetime, to ensure that both what is important for them and what is important to them is built into support and service provision.
  • Parent advocates should take time to build relationships with disabled self-advocates and activists, to be able to recognise their priorities and also to understand some of the tensions that exist and think carefully about how, when and where they advocate. I would also recommend Carey et al’s book Allies and Obstacles as a good starting point.
  • Keep the pink ice-cream van in the plan! Don’t let your child’s future be limited by your own views about what might be possible. Instead work with them and the professionals supporting them to help create a way for their dreams to come true (or as close to true as possible). And have fun along the way exploring ways to do that, taking a few risks and mapping out the next steps in the journey together… Good luck!

Useful links about Mental Capacity and decision-making in law

Down’s Syndrome Association The Mental Capacity Act: Frequently Asked Questions

Contact Preparing for Adult Life

IPSEA Mental Capacity and Decision Making


Book review: Disability and Other Human Questions, Dan Goodley, 2021

This book review was written for PESGB but was never published due to a range of reasons (not – as far as I know – the quality of the review). I do not want the review to go to waste, so am posting it here…

If we are thinking about what it means to be human, we need to start with thinking about disability. This is the central claim that Goodley makes in Disability and Other Human Questions, as he invites us to think more creatively about what it means to be human, whilst positioning disability at the core of his arguments. As well as being an important topic in its own right, Goodley asserts that disability is the phenomenon from which we can ask and answer important questions about the human condition, as a ‘conversation starter: a driving subject from which to make sense of ourselves and others’ (p. 121). Disability is not simply a topic that should be left to disability studies scholars or disabled people; rather, Goodley asserts, non-disabled people have a duty to look at how they relate to the phenomenon of disability, and to reflect on whether their understanding of what it means to be human might be denying the humanity of some people.  

At the outset, Goodley describes his aim to write a readable text that is targeted at a wider audience than the disability studies scholarly community who he might normally write with and for. This approach to writing does not, however, mean that Goodley shies away from asking significant philosophical questions about the human condition; indeed this is the book’s raison d’être. Critical theory and posthuman thought become entwined with stories about Goodley’s relationship with disabled people, co-researchers, colleagues, social media, alcohol, friends and family – categories that are frequently connected and sometimes overlapping. This a book that is big on personality, as it weaves humour, cultural references and social media extracts into the fabric of the text, to deliver a fast-paced and engaging book. It offers stories about disabled people’s experiences and relationships that urge the reader to stop and think about the importance of a shared humanity, interdependency and community. This is not a book that presents itself as that of a non-disabled academic writing about disability, which might risk upholding the traditional ‘deficit’ or ‘medical’ model of disability, situating the professional as expert. Instead Goodley explains how thinking about and with disabled people can open up thinking about the myriad of ways of being and making sense of the world, as disability is a ‘subject through which we can rethink what it means to be human’ (p. 121).

The book is split into six probing chapters, each discussing a different theme to answer the singular question about what it means to be human in the twenty-first century:

  1. What Brings Us to Disability and Other Human Questions?
  2. Who’s Allowed to Be Human?
  3. What is Human Desire?
  4. Are Human Beings Dependent?
  5. Are We Able to Be Human?
  6. What Does It Mean to Be Human in a Digital Age?

Within these chapters, Goodley addresses a wide range of topics including dependency, belonging, desire, disability activism, ableism, social media, austerity and Covid-19. He packs a considerable amount into this whirlwind of a book. As a result, some of these themes are only lightly touched on, as Goodley attempts to show the importance of disability when we are thinking about a wide array of concepts. With its reliance on personal anecdotes and short quotes from theorists to illustrate his argument, at times it might lead the reader to want more depth and detail, though this could be the outcome Goodley would like to achieve, provoking further thought and reading.

Setting out the context for the book, Goodley introduces an array of artists, activists and academics who have radicalised understandings of disability within the field of disability studies. Anyone wanting a detailed discussion about the history and development of the field or seeking to understand the tensions that existing within it might feel disappointed that he does not go into greater depth here, and this might have lent more weight to the arguments he makes later in the book. Goodley does, however, provide several references to further reading to enable those who wish to find out more. Indeed, as I have mentioned, this text is not intended to be a scholarly disability studies tome; rather, the focus is on what it means to be human and the importance of relationality, rather than a book about disability per se. Goodley therefore employs his own story of ‘recovery’, demonstrating how he came to rethink disability, to frame this introductory chapter.

Although the whole book draws on personal stories, this introduction to the field feels distinctively autobiographical in approach. Leading with a non-disabled person’s story in a chapter introducing the importance of disability activism and the role of disability studies might appear problematic, especially as understandings of disability explained by non-disabled people have historically led to disabled people being constituted in terms of lack or deficit of individual functioning and stigmatisation. However, Goodley recognises this, and he uses his story as a non-disabled person to reinforce his claim that stories of our relationships to disability are key to exploring how particular world views have come to dominate how we think about what it means to be human and who is included in the human category (and who is not). Rather than attempting to speak on behalf of disabled people, Goodley focuses on how his relationships and experiences with disabled people have enhanced his own understanding of what it means to be human and, more importantly, to demonstrate the significance of connection and relationships with those around us as part of this shared humanity. Although disabled activists might be leading the way in challenging their oppression through the restorying of disability as a social rather than individual problem, Goodley contends that non-disabled people play a substantive role in how disability emerges in the world, and therefore it is incumbent on us to unpack our own conceptions and prejudices in relation to disability. It is necessary for us to tell our disability stories and to subject our understandings of difference to analysis.

Goodley observes how disability is frequently missing in critical accounts of oppression and inequality (pp. 25-6) and philosophical approaches to what it means to be human. Whereas philosophers frequently consider concepts such as equality or justice in relation to social class, race or gender, for example, disability is frequently absent from such considerations. Davis (2002) describes how disability ‘is the identity one may become part of’ and claims about half of the population is likely to be dealing with disability at any one time, either their own impairment, that of a family member, or in a role of caregiver (Davis, 2002, p. 4). Furthermore, he describes how, if there is anything universal in life, it ‘is the experience of the limitations of the body’ (Davis, 2002, p. 32). Despite disability having such significant impact on us as individuals, and for society, discussions about disability are frequently missing when thinking about marginalised groups or wider philosophical concepts. Goodley therefore seeks to explore the ways ‘in which normal, everyday and typical understandings of the human being are, in reality, incredibly exclusionary: including some and omitting others’ (p. 23).

Kittay (2010) has written about how her relationship with her daughter, who has severe learning disabilities, led her to recognise how much of philosophy depends on being able to make claims about ‘distinctive human capacities’ and further that political ideals of justice are often ‘grounded on a set of competences or potentials’, many of which her daughter most likely does not possess (Kittay, 2010, p. 393). For this reason, she questions the humanist principles on which much philosophy is based and offers an alternative ethics of care. Goodley similarly describes how his relationships and experiences of time spent with disabled people have led him to question humanism as a way of thinking about questions relating to being human, due to its emphasis on rationality and autonomy, which leads to some people being recognised as ‘less than human’ as their capacities fail to meet normative expectations. This, he argues, is because it is assumed that ‘being able’ equates to ‘being fully human’ and ‘marks what it means to be a typical or normal human being’, i.e., someone who is self-sufficient, willing and able to engage with the world (p. 79). Furthermore, this understanding of what it means to be human fails to recognise the ‘perilous, precarious, diverse and unstable nature of humanity’ (p. 81) and it can lead to the exclusion of disabled people, due to their absence in discussions relating to theory, politics or policy. He suggests that instead of reliance on humanist philosophy, which excludes those who are positioned as abnormal or lacking capacity, it is necessary to be more inclusive of disabled people who are fighting for their right to be recognised as human beings. One of the most significant questions Goodley asks is why would anyone ‘want to identify with humanism if it has these inbuilt discriminatory leanings?’ (p. 37). He proposes that posthumanist approaches offer a productive alternative to what he sees as the exclusionary offerings of humanism, providing an alternative way of thinking about what it means to be human in an ever-changing world.

Goodley’s reflection on education mainly falls within the conclusion to the book and feels to be a bit of an afterthought. This could, of course, be seen as ironic given that he describes how disabled students, if they are included at all, tend to be considered as an afterthought (p. 122). Goodley describes how contemporary educational systems and curricula are developed with non-disabled students in mind, leaving disabled students ‘at the end of the educational conversations, as the postscript, the addendum or the complicating outliers’ (p. 122). Despite a rhetoric of progress relating to inclusion, disabled students are frequently ‘segregated, marginalised and neglected’ by educational systems (p. 122). He describes how special education has been developed as a reflex reaction to mainstream education’s lack of engagement with disabled students, but this dislocation of disabled students now requires an urgent conversation. Offering a similar argument to one presented earlier in the book, he suggests the exclusion of disabled students is due to a concealed humanist philosophical approach that undergirds education, which results in schools that only serve a ‘preferential community’, that is those who ‘are assessed to be ready, willing and able’ (p. 124). This constitutes schools as a place to serve a particular kind of student and fails to serve students – not just disabled students but also other marginalised groups – who fail to meet the normative requirements set out. Other ways of being, other human qualities are ignored and not valued within the education system. Given that this reflection falls within the conclusion, Goodley does not go on further to discuss how we can conceive of education differently; he appears to leave it open for the reader to think about how to address what he calls a ‘very tragic situation’ (p. 124). I do think the book would have benefited from more discussion about education and the inclusion of disabled children and young people earlier in the book, due to the role education plays in how we learn about and come to know disability (or not).

To end on a personal note, my interest in disability was the reason why I was drawn to this book. I have a disabled daughter, and my doctoral research draws on writing and research from disability studies scholars, as well as those writing and thinking about the philosophy of education. This does make me wonder whether Goodley will achieve his aim of reaching a wider audience. The danger I foresee is that only those already impacted by disability, or already interested in this topic, will choose to pick up the book and engage with the questions Goodley presents. It would be a shame if this were the case. This review is being written at a time when the impact of Covid-19 and difficulties related to long-Covid are still largely unknown. As Goodley describes, Covid-19 has been a powerful reminder of human vulnerability, our need for connection and our dependency on others, as individuals have unexpectedly been introduced to impairment and dependency as a result of the virus. If only to think about what a post-Covid society might look like, this book is worth a read.

A sample chapter is available online:


Davis, L. (2002) Bending over Backwards: Disability, Dismodernism & Other Difficult Positions. New York and London: New York University Press.

Kittay, E.F. (2010) The Personal Is Philosophical Is Political: A Philosopher and Mother of a Cognitively Disabled Person Sends Notes from the Battlefield. In: Kittay, E.F. & Carlson, L. (eds) Cognitive Disability and Its Challenge to Moral Philosophy, Chichester: Wiley-Blackwell, 393-413.

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.