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
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
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
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…