Categories
co-production Disability Random musings

Anyone for ice-cream?

Written for Making Chromosomes Count: https://makingchromosomescount.co.uk/2022/11/08/parental-advocacy-via-a-pink-ice-cream-van/ (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 https://www.downs-syndrome.org.uk/wp-content/uploads/2021/04/The-Mental-Capacity-Act_FAQ_RF_10.06.2020.pdf

Contact Preparing for Adult Life https://contact.org.uk/help-for-families/information-advice-services/preparing-for-adult-life/

IPSEA Mental Capacity and Decision Making https://www.ipsea.org.uk/mental-capacity-and-decision-making



Categories
Disability

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: https://books.emeraldinsight.com/resources/pdfs/chapters/9781839827075-TYPE23-NR2.pdf

References:

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.

Categories
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:  https://www.eventbrite.com/e/co-productive-partnerships-network-meeting-tickets-191016113337  Follow us on Twitter @co_productive #IgnitingChange

Dr Katarzyna Fleming, Leeds Beckett University

Sharon Smith, University of Birmingham

Dr Antonios Ktenidis, Leeds Beckett University

Categories
Postgraduate study Random musings

#BERA2021

During the next four days I am attending the British Educational Research Association (BERA) 2021 Conference (follow #BERA2021 on twitter if you are interested in finding out more). This year, because of Covid, the conference is running online. As a result, I am sat in my bedroom at my PC, and do not have the luxury of attending an in person conference, which might allow me to switch off a little.

I do not come to this conference from a stress-free place. My daughter has started college and appears to be finding some aspects of it hard. Of course, this is not a surprise after finishing school in May 2021 and having had a long summer, spent mainly at home. It is going to take some getting used to, and we are confident she will be ok, but I am worrying for and about her right now. Additionally, it is her Education, Health and Care plan annual review meeting next week. We have been asked to provide our parental feedback in advance, a process I find incredibly stressful too. Not only have we already had the use of ‘parents’ in an email instead of our names, we know we are already likely to be positioned as ‘difficult’ because we are being very clear about the purpose of this process, what needs to change in the EHCP, and that we will not accept a document that does not meet legal requirements. Once again I found myself being ‘that parent’ who writes long wordy emails citing the Code of Practice, regulations and case law. And hated myself for it. This too is niggling away at me, my discomfort at not being able to relax and just send my child off to college, the way the process messes with my emotions, my attention span, and my relationships with those around me.

However, despite all of this going on, I am going to do my best to focus on the conference. I have been through and pre-planned some sessions I want to attend, and I am going to write here about the things that stand out or affect me during this four day conference. It will not offer a detailed or full record of everything that has been said in the sessions I attend, but I aim instead to use this space to make connections between presentations and discussions that I take part in. It is a bit of an experiment, I have not tried this before, but let’s see where it goes!


The first thing I want to put on this record of my time at BERA is the The Res-Sister Manifesta which was mentioned in the first keynote presentation by Dr Katy Vigurs. Katy presented a powerful critique of the normative expectations that surround Early Career Researchers (ECRS), ie those undertaking research and within 5-10 years of achieving a doctoral qualification, depending on which organisation is defining the category. Whilst I have witnessed many of the expectations (eg how quickly you should progress through each stage, the need to be visible and to be part of the academic community, the pressure to publish etc), I have not necessarily felt these pressures myself. As a mature student who comes to study and research later in life, I let much of it wash over me. I also am possibly more confident in putting my foot down and being able to argue for doing things the way I want to, or at the pace I can. Don’t get me wrong, I am not immune to the pressures, and during the Covid pandemic I was absolutely beating myself up about ‘falling behind’ until I questioned this narrative, and asked myself who I was falling behind when we are all working on completely different projects and all have different demands on our lives. It was this messiness that Katy was referring to when she discussed the role academic CVs can play in making some aspects of our journey invisible, as they present a neat and linear journey of progression. This really made me think again about how I use this blog to talk about my research and how I write my doctoral thesis too.

Going back to the manifesta, I added it here because it speaks so much to how I have tried to approach my doctoral study. I have tried to both find and create spaces to work and think with others, from whom I learn so much. Most of this is non-formal spaces such as reading groups and informal support with other research students and academics I have met along the way. I want to be the type of student and researcher who is supportive, who spots an article or event that someone else might find useful and sends it to them, that asks a positive and helpful question in a seminar or conference setting, or that notices when someone is struggling and lends them an ear. I don’t always get this right but feel that being a research student can be such a lonely place, I want to do something to support others. (Indeed this is one of the motivations behind setting up PESN). I also want to speak out about injustice. This is something I need to do more of. I am lucky. I do not necessarily intend to have a career in academia, indeed I have no idea what I will do next. Therefore I do not need to perform in particular ways to try to ensure I am close to presenting the ideal ECR. So I need to be braver. I need to put myself out there and challenge more…


This morning I did not go to the BERA conference (as I had the opportunity to attend an SEND related conference and could not do both). Just before I returned to the conference platform I saw a tweet about BERA Abstract Interrupted which offers a provocation to stimulate discussion about who’s voice and expertise counts and what barriers to participation in discussions about education and educational research might persist. I really enjoyed this blog post and urge anyone reading this to go and take a look.

In particular, the themes within the article resonate with the concerns many parents of disabled children raise, about lacking voice and visibility – indeed this was a theme raised a few times in the conference I attended this morning and is the driving force behind the new Let Us Learn Too parent-led campaign as parents of disabled children want to have their voice heard as the long awaited and overdue SEND Review is developed prior to being put out to consultation.


I return to this blog post over a week after the conference because, I have to be honest, life got in the way. I was delivering training the day after the BERA conference ended and then I was straight back into studying and it was also my daughter’s EHCP Annual review meeting, which always takes a toll both in terms of time and emotionally. Furthermore, I have been having to try to sort out agreement from the local authority for a short term solution to the 2 days a week where she is home, due to her work experience placement falling through at the last minute. Maybe this sounds like excuses, but I simply did not have the time to sit and reflect further on the time I spent at BERA.

So now I return to my handwritten notes and wonder if they will make any sense to me at all…

During the past 12-18mths, I have been drawn more and more to postqualitative, new materialist and posthuman research approaches, as a way of thinking differently. I hope that my research will suggest alternative ways to think about parents of disabled children and inclusion, but as the approach I am taking is quite open-ended and uncertain, I am keen to mop up as many ideas and theories and approaches as I can, to help me find meaningful ways to take my research forward. Posthuman and new materialist theory is still quite new to me – I recognise I have so much still to read so that I can think with theory in new and exciting ways. So I decided to use the time I would have at the BERA conference to attend as many sessions as I could that might be drawing on similar approaches. (They were in the minority by the way.) This meant I attended sessions that I might previously have avoided, such as the session where participants were invited to bring a sound with them, so that meanings could be created together, and a shared soundscape was developed in the session, or the ‘unsession’ which offered a break from the standard conference presentation, encouraging participants to step away from their computers and take photographs of items nearby which were then used to discuss the impact of the Covid pandemic on researchers and research.

Although these more creative sessions scare me a little, due to the requirement to participate in the moment (I am someone who likes to listen, reflect and then I might have questions a few hours or days later), I pushed myself to attend them and found that they were actually the most interesting and vibrant sessions from the whole conference. Anyone who is familiar with these research approaches will not be surprised by this, but the sessions just felt alive, they were energising. I could not necessarily put into words how I felt after the sessions, but I knew that they had impacted on me and I had definitely benefitted from attending. My mind was buzzing about how I might use some of the ideas for my own thinking and research, rather than thinking necessarily that I had learnt something new. I think that was the point… and it was great to be able to engage in playful sessions which were both thought provoking and energising in a way I did not expect.

I don’t plan to summarise the sessions further, as that was never my intention with this blog post. I simply wanted to pull out some of the sessions that have stuck with me, that I replay over in my head and continue to think (differently) about. However, here are a few key take aways from my notes:

  • Technology can be both enabling and disabling
  • However much we are used to using online video conferencing, there will always be someone who causes the words ‘you’re on mute’ to be said
  • We need to be attentive to the voices we cannot hear, the silences, the unspoken, the invisible, the absences, Listening is more than words. Silence can be resistance
  • Some bodies are seen as ‘space invaders’ ie out of place
  • And syndrome’ exists – ‘I teach 24 children and one of them has/is…’ ‘How do I teach one of them’
  • affective intensities change our capacity to act
  • collective, mingling, comings together, resistance, entangled
  • pulse, seize, tension, between, action, emergence
  • play, muck about, experiment, meanderings, possibilities, see what happens…

Categories
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 https://www.liverpooluniversitypress.co.uk/journals/article/65783/

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.

Categories
Postgraduate study Random musings

All that glistens…

A photo of my feet on a beach next to an incoming wave. I am wearing a black dress and leggings, and some claret coloured saltwater sandals. It is a stony beach not sandy.

During the last two weeks, I have been fortunate enough to go on some short UK breaks. Last year we did not manage to go away on holiday, and I really missed seeing the sea. So this year, we found some holiday locations that we hoped would allow us the opportunity to relax, to see the sea, and to avoid being in crowded places.

Throughout the stays, I posted selected photos on my social media accounts. The responses were typically positive, with people commenting about how lovely the holidays looked etc etc. This made me reflect on what was missing in my account of my holiday. I had chosen only to show the positives, the highlights.

We stayed in this beautiful caravan on one of our stays (a House of Hackney pop up hotel initiative):

A vintage caravan covered in House of Hackney artemis print. This is a dark green background with a large bold floral design on it.

I posted pictures of us relaxing by the stunning pool:

An indian pool at Castle Trematon in Cornwall which is part of the House of Hackney pop up hotel initiative. The sun is shining. I am lying on a lounger which is covered in a pale green floral House of Hackney print. I have a black and pink floral dress on, black leggings and the same saltwater sandals as before. There are giant plants surrounding the pool in terracotta pots.

It looks idyllic. It was idyllic. I would jump at the chance to return. However, what my photos did not show was the steep path between the car park and the caravan. The path which we had to carry all of our things down from the car – mainly me doing the carrying I hasten to add as my daughter was not able to help much. Nor my face when I was told the next day that there is a parking space I could use, right next to the caravan, meaning I did not have to have that struggle after all. This holiday was just me and my daughter. These photos do not show her tiring due to hypermobility, nor struggling in the heat, due to difficulties regulating her body temperature. They do not show how her short attention span and difficulty in reading meant she was bored within minutes of being at the pool and she was not happy to sit poolside reading all day. (Though to be fair, most 16yr old girls would probably prefer to be chatting to their friends rather than sitting with their mum reading a book!)

The following week, my husband joined us on holiday and we went to a stunning Oast House in a different part of the country. It was beautiful. It also had bats! Now we love bats, but not when they keep us awake all night, nor when they make the bedroom we are staying in very smelly. Again, the photos made it look idyllic. And it would have been perfect, if we could have slept at night. Our final trip (yes, three short breaks in two weeks, I know how lucky I have been!) was to a beach apartment. Again, stunning location, as you can see from the photos. But these photos of the beach were taken early in the morning before the beach became incredibly busy. They also do not show the busy road the other side of the apartment, which motorbikes liked to use at night, nor the dirty towel we found from the previous occupants of the apartment (ugh, not great during Covid!). We ended up leaving after one night, needing sleep more than we needed a sea view.

view of beach, and in the distance the apartment building we were staying in

Please do not get me wrong, this is not a post where I want to moan about my holidays. I have really enjoyed the breaks and I feel incredibly relaxed on my return. The breaks away certainly did the trick. Instead, this post is intended to be about my reflections as the comments poured in on social media, where I recognised how the images I presented only really showed one part of the story, the glossy happy shiny one. They do not fully reflect the experience we had, nor how happy we were to return to our own beds and reliable Wi-Fi.

This experience and my holiday reflections, have also led me me to also reflect on my research – and the research of others – and what gets left out of the picture when we present or talk about our research, or indeed in the PhD thesis itself. I am keen to ensure that when I talk about my research I talk about the difficulties, the tensions, the messiness of the process. I am drawn once again to this wonderful blog post by Francesca Ribenfors, where she discusses the benefits of approaching research as an assemblage rather than a linear process, describing how ‘Mess is to be expected as the thesis, one element of the research assemblage, is a becoming. We cannot predict where it will end up or what we will end up with due to the shifting nature of the assemblage and the elements within it’.

This week alone, my plans have changed. I had intended to make a long distance journey to meet two parents who have kindly agreed to take part in my research study. But whilst I was away on my recent travels, it became obvious to me that my car needed to go into the garage before I attempt any more long distance journeys (the air-con seems to be broken, the back windscreen wiper has stopped working and the control dial stops working in the rain). When it is sunny and hot, the control dial will work and I do not need the wipers, but it is too uncomfortable to drive due to lack of air-con. When it is wet, I do not need the air-con but I cannot see out of the back window and I cannot see how much fuel I have left. (I also should note that part of me was also massively relieved, as – if I am being totally honest – I am still also worried about catching or passing on Covid, despite being vaccinated.) So I will now be undertaking one of the meetings via Zoom, and am waiting to hear whether the other parent would like to do this, or to postpone the meeting until later in the year.

My car having issues would not normally come into my thesis – surely? Yet, the issues with my car will undoubtedly have an impact on the research. By meeting on Zoom, it will change the interaction between us. Additionally, if the second parent decides to postpone their meeting, both they and I will have had additional experiences, thoughts, and interactions that will impact on how we engage. Already since I last spoke to the participants on the phone, my own situation has changed and I am finding myself back in potential conflict with the Local Authority about my daughter’s post16 placement for September, which will potentially impact on how I enter into the engagement.

The car-weather-researcher-parent entanglement has a definite impact here, but how and where do I discuss this without it looking like a linear description of ‘what happened’? I am still trying to get my head around this. For a long time, I have been wondering how to use this blog. What purpose does it have. For now, I think it offers me a space to think out loud, and to have a record of some of that thinking. I would welcome others reading this to join the conversation (though recognise that at the time of writing, I am probably the only person accessing this blog). This research journey is not something I can or want to do on my own… I would love to hear from you!

Categories
Postgraduate study

Launch of PESN

Last year, Laura Watson and I ran a postgraduate conference for Postgraduate students in the field of Philosophy of Education (I wrote about it here). Since then, we have spent a lot of time thinking about what else we could do to support and collaborate with other PGR students, whether it be more events/conferences/workshops, or sharing writing, seeking collaboration opportunities or just an informal space to chat and meet up with each other.

With this in mind, we have launched a brand new Postgraduates in Education Support Network (PESN) and we would love to hear from other students who might want to get involved!

Categories
Postgraduate study

Sisters are doing it for themselves…

Last week, together with a friend and fellow PhD research student Laura Watson, I organised a conference for postgraduate students. We have been asked by some of the attendees to share the process we undertook and our learning from the event, to help others who might want to organise a similar event. If you want to read a blog about the papers presented on the day, rather than the organisation of the event, please see this blog by Gary Walsh.

Background

For a few years now, we had felt that there was a need for a space dedicated to students studying and researching in the field of Philosophy of Education to be able to share their work, to enable feedback and critique on their developing philosophical theories. Whilst we recognised that students are obviously welcome to both attend and submit abstracts for posters or papers at a range of conferences, for instance the annual conferences run by PESGB or BERA (which has a Philosophy of Education Special Interest Group (SIG)), some students feel that they lack the experience, knowledge or confidence to present at these major conferences. Conferences can feel quite intimidating for some students, and not everyone’s supervisor is willing or able to support their students’ conference attendance, for instance by making introductions during the event to support networking, or attending the paper being presented to provide moral support. Conference attendance as a student deserves its own blog post at some point (maybe when I am feeling braver!)

With the shift to online conferences as a result of Covid-19, we saw an opportunity to organise an online conference specifically for postgraduate students in the field. This felt particularly important given that numerous conferences including the PESGB postgraduate summer school had been cancelled, due to lockdown and social distancing requirements. The PESGB summer school, in particular, would have provided selected postgraduate students with space to think about their own developing philosophical thought alongside peers and a mentor, with a view to presenting at the main PESGB conference in advance of working towards publishing a paper. This was an incredible opportunity, and we think the intention is that it will be open to applications from students again next year.

We therefore felt it was a suitable time to test the water and see if other students might welcome a safe and inclusive space to present their ideas. Of course, it was quite possible that it was only us who felt that there was a need for a dedicated space run by students for other students to share their work with each other. We simply would not know unless we were willing to give it a try, even if it meant we would be associated with an unsuccessful event. We did not know how many people might submit an abstract nor whether others would want to attend to listen to the papers being presented. (Spoiler: it was not unsuccessful and we were not alone in valuing such a space, phew!)

We approached the South Coast branch of PESGB, of which we are both members, to discuss our idea for an online conference, and they offered their support to the event. We would like to extend our thanks again to Dr Marie Morgan, Dr Wayne Veck, Dr Emile Bojesen, Dr Adrian Skilbeck and Dr Alexis Gibbs, from the University of Winchester, for their support in advance of the event, and for chairing sessions for us on the day. Thank you to Paul Veck for designing our promotional flyer. It is very much appreciated, and we hope that we did the branch proud.

Including everyone

At the outset, we were keen to make sure that the conference was as inclusive as possible, and that the ethos of the day was based on the idea of support and collaboration, with everyone learning together and from each other. Critique would be welcome, of course, but within an encouraging and friendly environment. We also were learning, along with our conference participants and attendees, as we had never organised a conference before, and did not have anything other than our own experience to guide us. As such, we too needed it to be a friendly and supportive environment.

One of the first things we did was to think about conferences we had attended (online and offline) and what we felt worked, or did not work for us as attendees. We kept in touch with each other as we attended online zoom meetings, conferences and workshops/seminars, collating our thoughts about what worked well or not so well.

I offer here a summary of the steps we took, in a linear fashion, though it was anything but a linear process. It was important that Laura and I got on well and were happy to learn together about how to run the conference. I am grateful for her ability to put up with my ramblings as we worked out our approach together. She is very patient indeed…

  • We chose a theme ‘Education and the Future’ as this was a broad theme, which we thought would encompass a range of philosophical theories and approaches to education.
  • We decided on a date, which at the time seemed a long way ahead, but it certainly came around quickly!
  • We discussed who we would like to invite to be keynote speakers – it felt important to us that we would invite keynote speakers that were either postgraduate students themselves or whose work was supportive of the development of students. We had no budget for an honorarium, or even for a thank you gift for the keynote speakers, so when we approached Rebecca Buxton and Lisa Whiting (editors of The Philosopher Queens book) and Professor Pat Thomson, we explained this was the situation and that and we would understand if they decline our invitation to speak. Fortunately they were willing to give their time free of charge in order to support the event (Dr Frances Howard also joined Pat Thomson in her session), and we are incredibly grateful to them for their contribution. Thank you all again.
  • Once the date was confirmed with the keynote speakers, we prepared a call for papers, which we promoted on social media and to a few students we knew, and waited with baited breath. A copy of our call for papers is here.
  • We were absolutely delighted with the quantity and quality of papers submitted by the deadline. We had thought we might need to extend the submission date, but this was not necessary at all. We realised quickly, however, that we had not thought about what criteria we would use to determine which papers to accept or reject. Given that we wanted to give as many people as possible the chance to speak, we only rejected those that we felt were either not education or not philosophical in approach. This meant that the conference suddenly became bigger than anticipated as we had to build in parallel sessions. It was also really exciting that we had speakers from all over the world, which again we had not necessarily anticipated. We realised it was necessary to put the time zone on all materials discussing the event as a result!
  • We then had the task of pulling together a schedule, trying to put papers into sessions, which also meant we had to bear in mind time differences for some speakers. It would have been useful for us to ask people if they had times they could not present at, because once we had issued the schedule, we needed to move a couple of people around due to prior commitments.
  • We wanted the presentations to be as accessible to attendees as possible, so we collated some guidelines for presenters. We have been asked to share these. These guidelines are here, but please be aware that they are just a first attempt and I think they still need refining further. This document will therefore continue to be a work in progress, as I think this is something that evolves and will never necessarily be finalised.
  • After we knew who our speakers and keynote speakers were, we organised a promotional flyer and promoted this on social media and via email to PESGB members. We decided to use Eventbrite for ticket booking, as this meant we could contact attendees quickly and easily, and also we were not storing attendees’ contact details on our own devices.
  • We set out to promote the event as widely as possible, including individual invitations by email to PESGB officers and local branch co-ordinators. We wanted to have academics attending the event, to support the developing work that is taking place in the field, and we were again overwhelmed with the support for the event. We had over 120 tickets booked (including the speakers).
  • On the booking form we asked attendees if they had any accessibility requirements to let us know. We had no budget for the event, but we agreed that we would have to find a way to ensure that if captioning or a BSL interpreter was needed, for instance, then it would be provided. We did not have any requests for captioning or interpreters, but some attendees did ask for a copy of the presentations in advance, to enable their full participation on the day. We therefore asked the speakers to provide these at least a day before, which most did, and we uploaded them into a dropbox file for the small number of attendees who had asked for access.
  • We chose a conference hashtag #PESGBPostgraduate2020 for people who wanted to tweet to use before, during and after the event.

I also want to detail some of the specific aspects of our conference, which we think helped on the day:

  • We found that lots of conferences struggled at the transition between speakers or breakout rooms. We decided initially to keep the event simple, with one zoom ‘room’ for the whole conference. However, when the abstracts came in and we felt there were too many for one session, we decided to run a second parallel session. To do this, we set up another zoom room on a different zoom account, rather than using the breakout rooms feature on zoom. This allowed us to have different zoom links for each room, which seemed to work well.
  • The day before the event, all attendees were sent a schedule for the conference, which included timings, abstracts and zoom links. This ensured everybody had the ability to switch between rooms as they would in an offline conference.
  • We decided to have both a Chair, who would introduce speakers, ensure the sessions kept to time, and manage the Q&A session, and a room ‘host’ who managed the waiting room and monitored the chat room. The host also reminded people via the chat room about what would be happening next. Laura and I took on the role of hosts, and the Winchester team agreed to be session Chairs.
  • We also decided to allow everyone attending the ability to share their screen, without having to be either a host or co-host or to have this function enabled by the Chair or room host at the start of their individual presentation. This meant that we needed to ensure the session could not be zoom-bombed by unwelcome content, so we chose to operate a waiting room, only allowing in those who were on the event booking list. We also needed to know how to remove participants quickly, should anyone who had booked on the event choose to be disruptive. One complication of this approach was where zoom names did not match the name on the booking form, for instance if a nickname was used, or where people had booked multiple tickets in their name for friends or colleagues. We simply had to message these people in the waiting room and ask them to contact us to confirm what name their ticket was booked under, so that we could provide access to the conference.
  • We knew that not everybody was familiar with how to share their screen on zoom, so we offered all attendees and session Chairs an optional ‘test’ session on zoom the day before the conference. This gave us all an opportunity to meet up online, to try out the technology and to ask any questions about how the day would run. This felt really useful and I would definitely do this again for any future conferences.
  • Some attendees do not feel comfortable with having their videos on or to ask questions verbally themselves. Therefore we stated at the outset that videos did not need to be switched on and that questions could be asked in the chat room, so that we could read them out for anyone who did not want to speak.

Where do we go from here…

As part of our conference, we built in an after event ‘drinks’ session, in which we sought feedback about both the event and what other opportunities students might want to explore for sharing of work. Some of this feedback and our learning is detailed below:

  • We knew that we had packed lots of papers into the day and that timings were quite tight. Each paper had 15mins and then 5 minutes for questions/discussion. This did not feel that it was quite enough in practice, and this was amongst the feedback we received afterwards. Attendees would have valued more discussion time and opportunities to discuss ideas that were generated during the papers being presented.
  • We tried to build in gaps between the sessions, but in hindsight it might have been better to have these even longer, as at times it did feel as though there was a lot of information had been presented in a short period of time.
  • We had decided that we would only be hosts and not use the conference as an opportunity to share our own work. However, when two people pulled out at short notice (for perfectly valid reasons) we were unsure how to fill the gaps, so stepped up and rapidly wrote a presentation for the day. This did mean that we were having to host and monitor the waiting room whilst also presenting. Our multi-tasking skills were certainly required!
  • We had intended to record the conference sessions, but then we did not do so on the day. This was because we were not sure that everyone consented to their image or name being recorded, but also we did not know what we would do with the recordings afterwards. It was an added complication, something else to think about. So we chose not to record the sessions after all. On the day the second zoom room had been set up to automatically record, however, and although we did turn this off, it meant that the very start of each session (a few minutes at most) was recorded. So we needed to communicate this to attendees, and let them know we did not download or access the videos, instead deleting them immediately.
  • It was suggested that instead of a conference on one full day, it could be run across two or more half days.
  • It was also suggested that the presentations or a paper could have been pre-recorded and uploaded for access before the event, and then the Presenter just give a five minute overview and have 15 minutes for discussion.
  • At one conference I went to last year, three papers were delivered back to back with no breaks between, and then questions/discussion took place which involved all three speakers. This is another option that could be considered.
  • Some presenters found it disconcerting to be presenting to a screen without any faces looking back at them (as most people had their videos turned off). Maybe the Chair and host should keep their videos on throughout, to ensure there is at least a couple of friendly faces visibly watching.
  • For future conferences, we could look at how the breakout rooms provided by zoom could be used to facilitate small group discussion about the papers that have been presented.
  • We were asked if attendees could share contact details with each other. Obviously, with GDPR requirements, we are unable to share the whole attendee list (which was deleted on Eventbrite after the event anyway). So we have given people the option to share their contact details. We are currently collating this and will share with those who want to keep in touch at the end of this week.
  • We hope that the papers might be able to be published in some form and we are talking to the JOPE editorial team about this currently. They have some ideas about how we might be able to achieve this. Watch this space! We are also talking to the PESGB Virtual Branch about involving postgraduate students in their schedule, and are finding out about the new PESGB website to see what opportunities this might present.

Once again, I would like to thank everyone who made this event a success. We were simply blown away by how well it was received, and continue to be committed to exploring opportunities for our peers to engage in discussions about our developing philosophical work.

I am sure to have missed something important from this post, so if you have any specific questions, do feel free to add them in the comments box and I will do what I can to provide more information. Thank you if you have got this far, I appreciate this is quite a long post.

Categories
Random musings

Once bitten…

Just over ten years ago, I wrote my very first blog post. I had intended it to be a way to communicate details of how a previous evening out with my husband and friends had unfolded. However, posting the blog for a few friends did not turn out how I expected, instead the post and the story I told within it blew up, and as a worldwide game of chinese whispers took hold, my story became retold, distorted and the message I thought I was sharing was completely misunderstood and misrepresented.

At the time, I decided I would simply never write another blog post again. The damage I felt from my inability to describe what I really wanted to get across in my post had put me off writing on my blog ever again. As a result, the blog remains dormant, with the hundreds of comments from others haunting me (despite the fact I refuse to go back and read them). Over the years, I have read other people’s blogs about a range of topics, with complete admiration at their bravery at putting themselves ‘out there’, still insisting that I would never venture into writing a blog post again.

Yet here I am. Launching a new blog. What has changed? To be honest, not much. As I type this, I still very much feel the fear. However, I recognise the benefits of sharing some of my developing ideas and thoughts with a wider audience, as it is important for me to receive critique and input from others. Also, I think that others might benefit from hearing about my experiences as a postgraduate researcher. Do I feel comfortable putting myself out into the public domain again? Absolutely not. Will I force myself to press publish on this post? Absolutely yes (whilst secretly hoping nobody ever discovers that I have a blog and nobody ever reads this). So far I have only shared the link with family members, one friend, and my university supervisory team.

So, tentatively, I step back into the world of blogging, recognising that the huge sense of discomfort about making my story and my thoughts public is something many others may also feel. I do not want to revisit the situation that led to ‘that’ blog post, and I hope that readers of this new blog will respect that (if indeed there is anybody reading this). This post has felt easier to write than I thought it would, so maybe this blogging lark will not be so painful for me after all…