Air and light and time and space: how successful academics write (a book review)

Given I am about to begin writing my dissertation the process of ‘how’ to write, as in, finding the time, space, company, motivation and craft to write are of interest to me. Writing has always been an agonising, if increasingly more rewarding process, as I find my own style and confidence in the feedback that I receive.

Academically I know that I produce good work; well-referenced, analysed and synthesised arguments, but it is always answering someone else’s questions. At undergrad’ level, it is just regurgitating someone else’s work but now I have hit master’s level and I’m beginning to define my own interests, ideas and research the writing process is changing. It is taking on a life of its own, like my research itself.

The book I am reviewing is a great introduction to the art of writing. It divides itself into four subsections that approach writing from different perspectives that I hadn’t really thought of as the novice researcher than I still consider myself to be; behavioural artisanal, social and emotional, The author, Helen Sword, herself a seasoned writer, based the book on a comprehensive piece of qualitative research that included interviewing one hundred academics from around the world about their writing practice; its ebbs and flows, the benefits and challenges, with forays into pure abstraction such as exploring the metaphors academics used for their relationship with their writing. This was complemented with a further body of questionnaires that expanded out the data set to encompass a considerably wider scope of writers in terms of their professional status and career state.

I found the tone of the book to be light-hearted. It bestowed upon me a sense of comradery as a new recruit joining the ranks of academic authorship. It was heartening to see battle-scarred veterans still describing some of the struggles I have whenever an essay deadline looms.

Some of the perspectives were different to anything I had considered before. The struggles of those academics working within English as a second language shone a light on the inherent language bias that still exists in so many aspects of our global life as human beings. In some ways, the struggles of those coming to their work from very different cultural origins seemed to echo those I feel when thinking about how much of my own lived experience to seed into my writing. I struggled whether to use ‘I’ or not for weeks in my research essay. It was only the support of a very knowledgable and experienced tutor, who both has oodles of academic as well as lived experience of mental health distress to reassure me that it was the right thing to do.

The different experiences of writing that I can bring to bear on my current development as an academic were also things that I had not considered before. Working as a graphic designer, copywriter and web designer has developed a skill set in me that I draw upon regularly in my own writing. Being autistic is a blessing and a curse. I am able to zoom down into the detail to an infinitesimal scale, and my proofreading is also pretty damn good after working as an account manager. But I struggle terribly with anxiety and cannot often summarise what I am going to do, or even know where I am headed in my writing because I don’t have the structure and context to know the destination. I have just learned to trust my instincts that the end result will usually be pretty good, and ultimately enjoy the journey on the way.

If I were to sum up Air and Light and Time and Space, my best attempt would be to describe it as a book about the philosophy of writing that ultimately has many gems for living as well. the habits of ‘lucky’ writers and academics; noticing opportunities and building networks, trusting their instincts persevering in the face of rejection and criticism and seeing the positivity in challenging or difficult circumstances. These are habits I have cultivated myself in the last six years of being mentally ill and which I am finding also serving me as I recovery and carve out a new professional niche for myself. Similarly, the advice to do something creative or expansive before writing as a means of opening the mind rung true when I considered it in relation to the time I have spent on my allotment and riding my bike in the countryside. Not all the advice was as relevant, but this is the beauty of this book. I suspect that there really is something for everyone.

Overall I loved it (and have decided to write this review about 15 pages from the end). The organisation of the sections, together with the author reviews, very personal, and sometimes vulnerable, author contributions, with practical ‘try this’ sections and a brilliant list of further reading that is interspersed into the text rather than being lumped together as the end, weave together into a lively and colourful consideration of academic writing.

The ethics of ethics

So I have to make my position very clear here.

I am in no way denying the need for an independent ethics approval process, within either the academy or the NHS. The need to ensure absolute protection for vulnerable groups and individuals is paramount. Ethics reviews also ensure research methodologies and rationale are robust. As such this process maintains and ideally improves the quality and scope of research over time as long as those reviewing submissions are up-to-date regarding the prevailing attitudes of the area of study they are examining.

Bringing me to the point that I want to make.

I am studying Mental Health Recovery at Masters level. The main values and principles of this concept are those of being person-centred, of empowering the individual, of moving away from the medical-model and avoiding labels. Instead, the philosophy of recovery is about allowing people the benefit of a self-determined identity. Most importantly, to me at least, it’s about returning to people their sense of agency and avoiding institutionalisation.

Why then, when I discuss with my supervisor my final dissertation do I find out that the fact that I am working with autistic people, automatically ensures that I have to get NHS ethics approval?

Being autistic is a difference, not a disorder, or an illness, or even a disability in itself. However, because the ‘label’ or God forbid, ‘diagnosis’ is made by a doctor this group of people that I belong to automatically classified as vulnerable.

You can be autistic and vulnerable, no doubt about it, but you can also be neurotypical and vulnerable. You don’t automatically need NHS ethics approval if you are working with neurotypical particpants.

My project was a self-selecting group of individuals who would not be sought through mental health providers because I did not wish to skew my data. Biases in medicine already exist towards a male-centred presentation and the fact that more women who receive a positive diagnosis tend to have more mental health distress and more severe traits of autism means I would not be able to explore what being autistic means to those who also identfy as women some or all of the time. Furthermore, I also wanted to include women who self identified as autistic because this is often a group that is missed in the official understanding of being autistic.

In both cases I was told I would need to seek NHS ethics approval, which usually takes six to nine months and therefore blocks my ability to carry out this research within the time constraints that I am bound by.

It makes me really angry when a whole group of people have their identity co-opted by doctors, researchers and sweeping statements made about their functioning, wellness and support networks. Surely the point to a recovery focus is that we begin to understand the different needs of the people we work within research, as well as in mental health provision and support? We need to stop assuming that everyone is going to run into trouble or conversely cope fine.

Self-identified autistic women who are struggling, who do need support, are then denied such because they don’t fit the stereotype that has been perpetuated by doctors and researchers for decades. The need to categorise people absolutely not only denies vulnerable individuals and families support but also potentially delays research that could help change this situation for the better.

Even though my masters would have been a small step along the path I hoped to tread, it would have given me a chance to commit to some exploratory research and scope out my ideas more practically for what I hope will become my PhD proposal. Instead, I have had to work within the confines of a virtual project which, although still a great chance to refine my thinking is not the same as actually testing some them.

Ethics are vital for the safety of participants and ensuring projects are of the highest quality, but in their current form, which is still governed by medical-model diagnostic assumptions we still have a long way to go before we can say our research is truly recovery-focused. Ultimately it becomes another gate kept by the say-so of psychiatrists rather than the genuine needs of the people who are intended to benefit.

Autism Dialogue Conference 2018

This year I have participated in the Autism Dialogue programme developed by Jonny Drury, in Sheffield, based upon Bohm Dialogue principles that are widely used in business and academia. The inaugural conference took place on the 14th December 2018 and I was invited to speak about the impression that AD had on me. The process of participating in Autism Dialogue has created a lasting and positive change in me that is still working its way through.

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The cave paintings at Chauvet in France demonstrate a new development in human artistic ability around the time of the major ice ages in Europe. These incredibly beautiful, photorealistic depictions were vastly more sophisticated than the previous simpler images, which we might typically recognise if we were asked to think about such early art.

Researchers from the University of York have aligned this new ability within a cluster of others that emerged at about the same time. Namely those of being able to focus intensely on one thing when making complex flint tools, to remember large swathes of terrain in order to hunt for food  that may be under cover of snow and over a much greater area because of animals becoming scarcer, and the ability to enjoy one’s own company more, because of longer darker nights and poorer weather making going outside of your shelter risky and uncomfortable. The same researchers have examined contemporary populations and have identified autistic people as being the closest fit in our own abilities and preferences to these new iterations of humanity that prevailed about thirty thousand years ago.

So to make this point as literally as I can, it seems autistic traits developed as a result of natural selection in order to give the people with them an evolutionary advantage under very specific conditions. We, autistic people, may have been instrumental in ensuring the survival of our species, which is a pretty big deal.

Thus, both modern science and art can appreciate very vividly the contributions an autistic version of humanity has made for the benefit and advancement of all of humankind.

I reflect with sadness that the same cannot be said for many of our peers today in the 21st Century where being autistic  is negatively stereotyped, stigmatised and regarded as a burden because of the cost associated with supporting people who are disabled by their inability to live in a world that can be distressing for them but which is also convinced of it’s own inherent validity in many instances.

I, we, have experienced a plethora of emotions, both collectively and individually. All of these became contents for the vessel of exploration that Dialogical Practice revealed itself to me to be. Perhaps the thing that struck me the most was the intensity of the perception in the room. At all events, autistic people were in the majority and our monotropic concentration that was focussed on the shared dialogue was palpable in its intensity. Similarly, the gentle stimming that many autistic participants subtly engaged in was catching. Our nonautistic peers commented how they felt comfortable engaging in their own stims which they would publically pack away in the presence of others.

I feel the Autism Dialogue events enabled a space for all human participants to experience autism in their own way, This unadulterated, unmasked undiminished autistic experience allowed us to explore its nuances and limits in a very visceral way. Ultimately though I left with a greater sense of who I am, a sense that there are others like me and that there is a beauty in my difference and our differences that has the potentiality to make a difference that I hope, at some point will be recognised as universally as the cave paintings in Chauvet are today.

Autism is a construct; a descriptive word. Today people with these characteristics are widely considered disabled and often lacking. Thirty thousand years ago we may have been revered as mystics, artisans or clan hunters if current research is correct. This makes me think that little by little and using tools and experiences such as Autism Dialogue we have a chance to chip away at the negative perception ‘Autism’ creates and transform it into something powerful and positive once more. Autism Dialogue has given me hope for the future in seeing myself and my community in this way and a new understanding of autistic beauty. I would like to thank Jonny for his work in making this happen and allowing me to be a part of it.

Image: https://upload.wikimedia.org/wikipedia/commons/0/0d/Chauvet%C2%B4s_cave_horses.jpg

People are more than their diagnoses.

“It was this prognosis of doom, this life sentence, this death before death that I instinctively rejected when the words “You are wrong” formed silently within me. With the wisdom of hindsight I understand why this moment in the psychiatrist’s office was a major turning point in my recovery process. When I rejected the prognosis of doom I simultaneously affirmed my worth and dignity.”

“And just as quickly as I turned away from the prophecy of doom, I found myself asking– so now what? In other words, I turned away from a hopeless path but also, at the same time, had to turn into something.”

Pat Deegan

The narrative of Pat Deegan recounting her own recovery journey from a place of deficit-based hopeless diagnosis has long inspired me, both personally and more recently, professionally.  Pat’s own recovery mission, to ‘become a doctor and make the mental health system that abused her work properly’ is similar to what I wish to achieve for autistic women who have been through a similarly negative experience with their own mental health and diagnosis. I have found a similar inspiration in taking the crappy life experiences I have had, which have nonetheless also been transformative, and delivered to me far more meaning and purpose than I could ever have found in my old life, and make something better for others out of them.

Professionally this is shaping into a PhD proposal that I hope will enable autistic women to be able to think more positively about themselves and their experiences or history. I wish to create an alternative narrative to that of a medicalised diagnosis; of which even the name makes you sound diseased. Most importantly I want this to be something that all women who identify as autistic can utilise, not just those who come to this place via a medical diagnosis. In this way, I am beginning to open out the idea of self-identification as a valid means of describing oneself as autistic as well as having the same bestowed by a doctor whose own perceptions of just what ‘autism’ is might be skewed by the research bias towards gendered male presentation anyway.

I want to focus on women because I think from what I have experienced and what others have told me about, that this is the group that gets one of the bummest deals of all bum deals. In thinking about women I have also wrestled with the concept of gender and so have had to accept that just as I find it intolerable that clinicians get to decide who is and is not autistic so it is not my place as a researcher to decide who is a woman or not. This is part of my decision to work within the participatory paradigm. Not only do I involve others with lived experience at every stage of the project, but I also have to accept that they will decide the factors of the research question itself. If someone with cis-made genitals identifies as a woman some of all of the time who am I to denigrate their primary experience?

Brown, Catana. Recovery and Wellness : Models of Hope and Empowerment for People with Mental Illness, Routledge, 2002. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/herts/detail.action?docID=1099395.

Dialogical practice

The idea of dialogue, in relation to my developing professional practice, and also within my research work, seems to be occurring more and more frequently. The Oxford English Dictionary defines a dialogue as either:

A conversation between two or more people as a feature of a book, play, or film. ‘the book consisted of a series of dialogues’ 

1.1 A discussion between two or more people or groups, especially one directed towards exploration of a particular subject or resolution of a problem. ‘the USA would enter into a direct dialogue with Vietnam’

However, both of these ideas are misaligned with the developing idea of dialogue that I am conceptualising.

The first place I encountered this idea was within the ‘innovation in practice’ module, where I compared the practices of Finnish ‘Open Dialogue’, a radical approach to the treatment of first episode psychosis created out of a number of different therapeutic systems developed over overall support and intervention methodology that has transformed mental and general healthcare in the Lapland region that it originated from. Longitudinal studies of Open Dialogue have demonstrated a capacity to blow ‘treatment as usual approaches’ out of the water in terms of functional and long-term recovery.

The next encounter I had with dialogue was my involvement in Autism Dialogue, a series of events organised in Sheffield based upon the principles of Bohm Dialogue. These events were a series of dialogues with no set agenda but with a selective approach to participation in which autistic and non-autistic participants were brought together to share ideas and insight with one another. This collective meaning grew from moment to moment and from event to event, building into a unique experience quite unlike anything I have had before. There were no formal methods of recording the contributions made, but I know that myself and several others have had their perceptions fundamentally altered by the process and that some really positive developments and relationships have resulted.

the third instance I have encountered dialogue was this evening in the foreword of the book ‘Reason and Rigour; how conceptual frameworks guide research.’ which describes “a dialectic stance for research, recognising that different philosophical, theoretical and methodological approaches have different strengths and limitations and that it is often most productive to try to engage these approaches with one another in ways that provide generative insight and a deeper understanding that any single theory or approach can make.” 

In all these ways, dialogue, at least to me seems to refer to something deeper and more profound than the dictionary definition given, which seems to concern itself with solving problems or the exchange of information at quite a functional level.

Dialogue as I am growing to comprehend it is a process of unfolding and understanding. It is about finding the meaning within yourself, as a person in relation to your own beliefs, with other humans and ideas and about all these things in relation to the world around you. These ideas, however, can change from moment to moment, with subtle shifts and major movements. The power of dialogue is developing an awareness of this process, of the ontological origin of your own perspective and the matter of dialogue as it occurs. So much ‘stuff’ in this world is, and has been, take for granted, from the idea that mental patients cannot make decisions for themselves to that still held by many people that you automatically consent to sex when you get married. Unless this is raised into the level of awareness, both individually and to a collective consciousness in a group or even social level we cannot begin to unpick the complexities of our contemporary experience. Furthermore, as each of us holds multiple identities which shift and change I would argue that dialogue is an essential tool for each of us to learn in order to learn and contribute to if we are to be able to cope and filter the terabytes of ‘chatter’ our digital world exposes us to each day.

Bringing this back to my own work, in developing my own methodological stance towards my final project I cannot work within the emancipatory paradigm mainly because I don’t consider myself disabled or hold that I have to subscribe to any model of disability as is suggested researchers adopting this approach should. My aim is to take a participatory stance whilst using the principles of Autism Dialogue to explore the unique relationship between myself and my counterparts. I will not describe myself in this work as a researcher, but rather a dialogical practitioner who contributes to a shared process of understanding that extends out beyond a shared verbal exchange and instead applies the same ideals and values to the development of the data and the interpretation of the finding and recommendations I make.

I know what I think I might find, but I have to put that aside, as I did when I entered dialogue and engage with what I find, even if it is challenging or even something I would usually choose not to engage with.

Reference:

Sharon, M., & Matthew, R. (2011). Reason and Rigor: How Conceptual Frameworks Guide Research.

NHS England ‘Act, Listen, Do’ event – March 19th 2018

Today I attended the first meeting with the wider NHS England Autism team, which I would describe as small but perfectly formed. I had already spoken to Sarah Jackson on Twitter,  and also met Aaron Oxford after speaking at Skipton House in London but this was my chance to meet the rest of their colleagues and learn more about the work that is being undertaken in NHS England from the perspectives of both awareness within the organisation and also maintaining a progressive agenda within the wider healthcare provision for those of us on the spectrum in England.

Maggie and Sarah, two of the NHS England LD and autism team
A number of points were raised. The lack of general healthcare support like is available for those with severe mental illness and also intellectual challenges. The need for a consistent marker of adjustments in healthcare records for individuals with autism and/or intellectual differences. The importance of making the process of feedback, concern raising and complaint making to be as easily as possible and to offer appropriate support or advocacy if and when required.

Three individuals, Carl, Aaron and myself contributed from a lived experience perspective to a number of different threads to the team’s work including information posters, a informational video that was being produced and also more generally about how the process of making a complaint or giving feedback could be improved, based upon our own past experiences.

More interviews about lives experiences of giving feedback
The day was really really enjoyable. We all had the chance to speak at length and individual communication styles were honoured which is so important when you are working in a mixed group. I was challenged on several points which was exciting and stimulating as these are the interactions that make me consider my worldview from the perspective of others and really refine my understanding of my own experiences.

Making contact, like I did today. with more individuals who are passionate about the work I am dedicated to makes the hardship of moving forwards when there seems little hope of success worthwhile. It gives me the chance to place my own life in the context of that of my community of fellow autistics and also understand the links within the greater disability, neurodiverse and mental health communities in which we are connected to.

The great film crew who did all the day's fiming
The construct of my life, as I understand it is moving further away from the socially according labels that I have had to organise my existence around. I don’t actually have the words to describe what I think I might be. I’m not really sure if they even exist in verbal language yet. What i do know though is the excitement of feeling I am walking on untrodden territory before. The definition of what we understand as autistic as given by those whose experience is within this remit is in a embryonic stage of development.

Although I have accepted the fact that I am unable to have more children because of the potential impact of my son’s and my health, the joy of creativity is still something that I can explore and embrace, perhaps in a more fundamentally autistic fashion by organising this around the creation of new knowledge and new ideas, rather than the production of flesh and bones.

Hilarious fake working for Twitter photos
I am not excluding the challenges and joys of parenthood as outside the desires of autistic individuals but rather suggest that the learning and knowledge might be an equally fulfilling life purpose for autistic women.

I am lucky to have the best of all my worlds.

Sexual Health & Disability Alliance – 12th March 2018.

Today I was invited to speak at the the first SHADA event of 2018, which has a specific focus on the autism spectrum and sexuality intersection. This is of growing interest to me, but the original invitation was extended last summer in June. The timing was auspicious to say the least.

The event was attended by a range of professionals with an interest in disability and sexual health  / expression, from Occupational Therapists, to educators and those working for advocacy and information services like Brooke.

The event was hosted by Tuppy Owens (a huge starstruck moment for me as I have owned one of Tuppy’s books since I was 17) who is a sex therapist and educator and  Claire de Than, a human rights expert and self-confessed disruptor. I had met Claire the previous year at a conference hosted by the Royal College of Obstetricians and Gynecologists when she spoke about the importance of fun [code word for SEX] in the everyday life of a human – disabled or not.

The SHADA event had a really informal feel. Speakers didn’t mind interruptions and conversation flowed freely between them and the audience on a number of occasions. This is great for me, as my processing means that I struggle to hold a question until the end and trying to do so affects my ability to concentrate in the meanwhile.

Mary Doyle, of rocket girl coaching spoke of the importance of coaching for disabled people, and her mission to dispel the myth that coaching is for male, white executives only, a point-of-view I wholeheartedly agree with after my own fabulous coaching with Lizzie Paish this time last year. Mary has cerebral palsy, but spoke from the heart about her achievements and hopes to spread some of the confidence she has gained over the course of her life and career. Mary is also training in supporting individuals with neurodivergency, which I am really excited to learn more about.

“Jenn is a natural speaker who engages with the audience and conducts herself in a relaxed, friendly way, with lots of interesting insights up her sleeve.”

Dr. Tuppy Owen

I spoke with jointly with Tuppy, from my own perspective as an autistic woman and the effect this has had on my sex [uality] and relationships. The short answer is ‘profound’, but that is another and much longer blog post.Tuppy herself spoke from her experience of supporting men on the spectrum with some really practical and considered suggestions that I was able to elaborate on in a little more detail. We were joined by Sue Newsome, a sex worker and surrogate who has worked with autistic individuals, whose accounts of the work she has done were sad, but highly illustrative of the kind of batting back and forth between services autistic individuals face every day.

After lunch Helen Dunman, a drama teacher working at the Chaley Heritage School in Brighton described the experiential stories that she has created to explain and develop understanding of sex relationship and bodies to young people and adolescents. The highly graphic nature of some of the narratives, such as sanitary towels with blood, or rubber penises on dolls with ‘semen’ on may be shocking to some, and deemed inappropriate by others, but the account of a group of young men in their twenties who all believed that masturbation would make you go blind demonstrated the desperate need for some honest and forthright conversation on the subject of our bodies and just how exactly they work.

It has been a fascinating day. I love the chance to hear about different, alternatives expressions of humanity – the idea of sexual surrogacy was not one I had encountered before. The idea of a direct expression of sexuality and intimate practice between a client and therapist makes so much sense if the expression of psychological trauma is enacted through the physical realm of the body – why should this not also be the direct medium via which to offer hope and healing as well.

As I know very well, words or lack of them, can only take you so far. Sometimes the direct experience of touch has no substitute.

“Having been impressed by Jenn’s persuasive advocacy skills,  I was delighted that she was available as a speaker at our recent meeting. She commands an audience effortlessly.”

Claire de Than

 

South Derbyshire CCG ‘personal health budget’ video

“Jen agreed to be filmed to talk about her lived experience of a personal health budget.  Jen not only articulated the positive outcomes of the experience, but was able to provide some valuable insight into how to make the process better.  Jen comes from a marketing background and was also able to review the film with me to arrive at a meaningful and useful end product.”

Tina Brown, Commissioning Manager

I recently completed some filming with a great team at South Derbyshire CCG who commissioned my personal health budget. The Senior Commissioning Manager, Tina Brown, asked to film my partner Mark and I following the overwhelming success of my recovery following the Sensory integration Occupational Therapy. Personal Health Budgets for mental health that have used their award innovatively are quite rare, even nationally, so any opportunity to highlight positive and successful personalisation of care must be taken.

The film was recently released on the CCG’s personal health budget landing page. I was really pleased to not only be able to speak about my experiences but also helped to create the final editing for the film. Enough footage was taken for a shorter public facing version and a longer adaptation for internal training. We also hope for it to be used more widely for NHS England in the future.

Coming up for breath.

The last few weeks have been completely crazy and I’ve barely had enough time to sleep, let alone take stock and write.

I have been involved in so many things, so many amazing pieces of work that it’s a bit tricky to know where to begin, so I’m going to start with a few highlights.

Today was spent working with the small but perfectly formed mental health team working within the newly formed Personalised Care Group at NHS England. The group was formed in the summer, conglomerating numerous programs that all have generally aligned goals and values to coordinate and raise the profile of personalised care by increasing volume. This was the first time I really understood the range and capacity of working being undertaken, and the fact that it is so embryonic and new makes it so exciting to participate in. We are still very much in the early stages of scoping and discussions so there isn’t too much concrete to talk about yet, but if you want to stay abreast of the conversation follow the #personalisedcare hashtag on Twitter.

Yesterday, (4th December at the time of writing) I was lucky enough to contribute a lived experience perspective on what it is like to live with high functioning autism and also use NHS services. Finding the balance between the big picture and the (sometimes distressing) detail is a skill that I am still mastering. Luckily, I had some amazing support from Luke O’Shea, the organiser of the event, as well as my co-speaker Will Mandy, a clinical psychologist at UCL who is doing some long overdue work on the needs of different cohorts who have autism, as well as the different presentations across the lifespan.

In the last two weeks, I have spent several days working to examine and redefine the ‘books on prescription’ adult mental health reading list. ‘Reading well’ is a hugely valuable resource that can assist those experiencing mental distress understand and manage their symptoms and conditions. The adult mental health list is one of the oldest and did need a lot of updating. The cohort of lived experience advisors that C4CC and The Reading Agency has assembled was diverse and articulated an amazing range of opinions and viewpoints. Work like this expands your perspective on mental health as well as allowing you to reflect on your own experiences and refine your perspective, so the opportunity for personal growth as well as the chance to contribute to something to help others in incredibly rewarding.

Last week, in addition to everything else, was the IPC residential in Liverpool. This is a semi-annual event that brings together all the Integrated Personal Commissioning sites across England to knowledge share and network.  To see the scale of what is being undertaken is truly breathtaking. There is a quiet revolution going on in healthcare at the moment, and from what I can see outside the demonstrator sites there is a huge gap in understanding and reality. The interative work cycle that NHS England is optimising personalised care through is disruptive on a grand scale. Quite a few people in commissioning and provider organisations seem quite sceptical but I have hope.

This sense of hope has been reinforced this week by a very quick visit to the mother and baby unit that treated me with my son five years ago, nearly to the day of my admission. There has been a big push in maternity provision since then which has also filtered through into perinatal mental health. The service I saw this week was transformed and improved at nearly every level of provision from the inpatient sleeping environment up to the total pathway delivery. I was so pleased to be able to see how some of the concerns that I raised have turned into small seeds that have blossomed into big and positive changes. The real difference has been the receptiveness of the staff. Like in most things, the professionals working with people experiencing distress are the linchpins that can make or break a service concept.

I have been slowly plugging away at understanding the situation for health and wellbeing for autistic individuals living in Derbyshire. I am passionate about my local area and community and ensuring that we are at least aiming for somewhere near a reasonable service seems a long way away. There are a number of constraints that bind us, and working out just what is causing them is quite complicated, and therefore requires a lot of consideration before a course of action might become clear.

 

Royal College of Obstetricians and Gynecologists – access to reproductive services for disabled women

The venue was the college itself in London, a building lined with rather magisterial portraits of former alumni and professors.

The conference covered all aspects of sexual and reproductive health, from sex education in schools, through to family planning and contraceptives, via pregnancy, labour and birth, with some stop-offs around the menopause and also sex workers for disabled peoples’ personal fulfilment.

I received the original invitation via the RCOG’s Women’s Voices Network, a collaborative alliance between the college and women who use relevant services to ensure the work and training provided by the college is appropriate and useful.

The range of speakers was excellent, the content equally thought provoking and exciting.

First up was equality and human rights lawyer Claire de Than whose fascinating work, supporting individuals to their right to sexual expression, or ‘fun’ as it was coined for the sake of blushes, was extremely funny as Claire is such a great speaker and sad in equal measures, given the indignities disabled and vulnerable people suffer to achieve personal intimate fulfilment.

Claire’s ability to translate complex law into humane and engaging narrative riveted me to the spot for the entire duration of her talk.

We all take the Declaration of Human Rights and the advantage bestowed by the European Court of Justice for granted. The work outlined by Claire really expressed just how far we have come in the last thirty years. It is easy to forget when you see how far much we still have to achieve.

Dr Jane Dickson (such a great twitter handle), up next, works as a Sexual and Reproductive Health Community Gynecologist. She had a great warm personal approach and made a dry subject, that of the choice of contraceptives available,  funny whilst staying on-topic. The choice and innovation possible in family planning stunned even me. Have you ever heard of a nuvaring? What a great idea!

The speaker that was especially pleasing for me to see what Alison Lapper, the artist with no arms or legs, whose naked pregnant body was created into a thirty foot high marble sculpture for the fourth plinth in Trafalgar Square. Alison was also featured as a disabled single parent in the BBC series ‘Child of our Times‘, first broadcast in the late nineties.

Alison’s disability and being a parent were hugely controversial at the time.

The bias and ignorance she encountered from health and social care staff about her ability to care for her son Parys were almost beyond belief. When I was really struggling with Mylo, I used to read chapter of the book based on the television series as there were some fantastic stories and images of the challenges that Alison had overcome in her quest towards successful parenting. It kept me going a lot of the time, as positive role models of disabled parents don’t really exist anywhere.

At the end of the individual sessions a panel formed with several other women, including some of the current leadership of the college itself. Questions from the audience were answered, the only audience participation until this moment, I put a question to the whole room at this point, rather than just the speakers about if anyone had any knowledge or experience of the needs of neurodivergent women in relation to their disability and accessing sexual health or reproductive services.

You could have heard a pin drop.

One of the speakers had an Autistic women speak at her own event previously (I forget the detail) however this was much more broad in its application, including her experience of sexuality and disability as well as lived experience of autism.

Given the invitation was extended via the women’s network I was expecting more of an open forum approach to the event.I was a little surprised that there was less audience contribution and participation. That being said, the quality of the speakers was absolutely excellent. The closing comments, given by the event’s partner organisation, the British Pregnancy Advisory Service, acknowledged the event was just the start of quite a long neglected area for the RCOG. They have made an excellent start in rectifying this, and I hope and look forward to any other opportunities I might have to visit and learn more again in the future.