#AutisticPhDiary 1 – A Journey Begins…

This is the first post in a new blog-writing project I have decided to undertake during the last few months writing my PhD thesis. I am due to submit my thesis no later than 29 September 2020, and that date is beginning to loom frighteningly close on the horizon. I am feeling lots of things about the imminent end of a 5 year-long “journey”. There are two main reasons why I have decided to document these final few months – the first is personal, as regular writing (particularly for an audience) helps me to document, process, and structure my experiences; thereby making them less overwhelming. The second is that while there are some great examples of literature discussing how the viva process may be adapted for autistic doctoral students, (see for example, Martin 2010; Chown et al., 2016) what I would really like to be also able to read is an account of the experiences, and emotions of an autistic PhD student approaching the submission of her thesis; so I have decided to create such an account. I have written elsewhere (e.g. here) about the impact of my autistic identity on my self-confidence as a researcher, and it is certainly the case that this aspect of me is having an impact on how I am making sense of the prospect of a period of intense hard work alongside significant transition.

Of course it goes without saying that my autism is not the only “part” of me that will be relevant in what I document in this series – other characteristics such as my physical impairments and my part-time employment, as well as the wider social context (not least the fact that we remain in the grip of a pandemic) are factors that influence my views and experiences, and therefore my writing. It should also go without saying that this account is the account of one autistic researcher[1] , and is not in any way attempt to represent the voices of any autistic except myself. It should therefore be approached as a “diary” rather than as a “how-to guide”.

I aim to post a weekly update, each Sunday evening.

Week One – 25th May to 31st May

I am currently working on one of the empirical chapters of my thesis. This one uses interviews with 14 disabled activists to explore their views on advance decision-making. Advance decision-making (including Advance Decisions to Refuse Treatment and Lasting Power of Attorney) enable an adult in England or Wales to make medical decisions in advance of a time when they lose the mental capacity to do this themselves; or, to nominate someone else to make welfare decisions in their best interests. I am interested in the ways in which disability-identity and politics influence the ways disabled people approach this topic, and how we may be supported, and support each other to make informed decisions about this key aspect of our lives. This week, I have been particularly looking at the roles my interviewees envisaged for Disabled People’s Organisations in providing information and support on these topics. I am really excited about this part of the study in particular, as I think it has the potential to generate the kind of “real-world” impact about which I am particularly passionate.

I made an exciting breakthrough in my understanding of the methodology I am using (Thematic Analysis) too this week, as feedback from one of my supervisors pointed out that I had fallen into a trap of beginning each sentence with an individual pseudonym, and basically simply listing the relevant quotes from my data. Having read the feedback, I had a mental conversation with myself that went roughly like this:

“It does sound wrong with so many names at the start of sentences”

“… But if I make it less tied to individuals, I’m going to be generalising beyond that which is supported by the data. That feels uncomfortable…”

“Why is that?”

“… It’s because you are only listing quotes. You’ve rushed into writing and haven’t allowed your thinking to “cook” sufficiently. This means you haven’t actually added any analysis in what you’re writing. It feels wrong because it is wrong. You need to go beyond the individual quotes and think about what they tell you about the topic.”

I know that there is fabulous methodological literature on Thematic Analysis, that expresses precisely this issue much more eloquently than I have put it here, but there was something very special about the fact that this was my discovery (having been pointed in the right direction by my supervisor) in relation to my data that made this a powerful learning experience. I always find it easier to learn from concrete experiences like this, rather than from general, theoretical teaching. Obviously nobody likes having mistakes pointed out but if there is one thing I have particularly enjoyed about my PhD experience, it has been the opportunity to have time and space to really “grow” my thoughts and my writing over time and to be able to treat feedback as the kind of learning experience that I think it is supposed to be.

I have also begun working through the requirements for submitting my thesis. I have had a lot of support from my disability coordinator at Uni to help me locate the relevant information, and we are getting together a plan. For me, this includes having as much concrete information as possible, as soon as possible so that I can picture what the processes of submission and my viva will look like – preferably in a visual format. I have also worked with my learning support worker to make a condensed contents of the guidance for thesis submission so that I know what’s where when I need to find things. This is an important process, as it stops me being overwhelmed by too much information. These are the kind of thing that are the absolute hardest for me, and other parts of the PhD of which I’ve been most afraid throughout. My “survival strategy” is a combination of pragmatism (making sure I have all the relevant information when I need it, and being proactive in making sure I have access to this) and “escapism” (I am able to “lose myself” in the writing, and imagine myself doing it for its own sake – because I have something to say, much the same as my approach to writing this blog). This combination of approaches means that everything gets done that needs to be done, but I also have clear headspace, with anxiety under control, that enables me to get on and write. I will keep you up-to-date with the success (or otherwise) of this approach!

Life in General

There is so much going on in the world, and in my life right now that sometimes there is a risk that my PhD gets lost in it all. These are genuinely worrying times in which to be alive – especially as a disabled person. I feel frightened about being identifiably disabled and about being as “open” and vocal as I am about disability -related aspects of my life. However, I accepted a long time ago that I am incapable of being quiet, and of “playing the game” – that ship has definitely sailed. And therefore, I am relishing doing everything I can with the circumstances I have been given (e.g. check out the Autistic Mutual Aid Fund which is open for contributions and applications).

Also, it is almost impossible to explain how much of a full-time job just being a disabled person is. Before we even get to work, or study, or any other aspect of citizenship, we have to negotiate a daily onslaught of self-advocacy demands. At present, I am attempting to get some specialised mobility equipment that I need while in Lockdown, as my flat is not sufficiently accessible for my needs. The equipment will cost £130, but while I have a supportive physio who is doing her best, she is unclear as to how to obtain the funding required. In the meantime, I have had to use inappropriate equipment which is caused even more shoulder and back pain than I usually experience, and has left me with yet another reminder of just how much my dwarf body does not “fit” in this world. I have then had the humiliating experience of having to explain to the physio the exact nature of my body’s failure to conform. Self-advocacy is supposed to be “empowering”, but when you are up against an oppressive system that requires you to articulate your “need” in relation to its deviance from social norms it does not feel empowering. It feels like embarrassing disgrace. I succeeded in getting the information across to the physio, and now need to wait an unspecified length of time for a decision on whether we will be successful in gaining funding. If not, I will have to spend more of my own money on being as mobile as possible, and holding back the deterioration of my joints as much as I can. Compared with the roughly £10,000 my mobility has cost me so far this is a tiny amount, but my savings have now evaporated, and anyway – it’s the principle!

You may wonder what any of this has to do with a PhD. The answer is “nothing” – and that’s the point! I include this anecdote simply as an example of one of the countless additional tasks that are necessary alongside my PhD, and all the other necessary aspects of life. It may not seem like a big thing, and in fact, compared with other things that are also going on for me personally, and for us globally, it is a small thing. But these things get inside your head. They take up time, they divert your attention, and most of all they leave you wondering how anybody with so many “needs” is ever going to cross that PhD finish-line.

The Bright Side

Things that help me:

  • I have a lot going on, and my attention is easily distracted. I use my ability to hyper- focus to my advantage, and I concentrate entirely on whatever I happen to be doing at that precise moment. This could be working on my thesis, it could be activism, it could be making food, making my bed, taking a bath… any of the things that my day involves. The key thing is, it gets all my attention. Everything else will still be there when I have finished.
  • If I get feedback on any of my writing drafts, I print out the annotated draft and work the amendments into my original. I then save the amended original, but I don’t save the annotated version (the one from my supervisor) with my drafts. It is still available (in a folder in my emails) but it doesn’t get confused with other versions of the draft.
  • Linked to this, I found it easier to separate out the different “themes” of my analysis as the chapter is growing. It makes them much easier to navigate – especially as my visual processing is not always reliable.
  • Speaking of “processing” (and sensory/physical issues to do with working) I use dictation software, and a screen reader to help me produce my work. Dictating not only dramatically reduces the strain, and therefore the pain on my arms, shoulders, and neck, but it enables me to work when pain and fatigue would otherwise make this impossible. The positive impact on my self-esteem is quite amazing – as my life becomes much less a series of failures to navigate the hurdles my body puts in my way – and much more a routine of succeeding. Likewise, a screen reader enables me to listen back to what I have written, and to proof-read, in a way that my brain can hold onto. This means that my work feels much more “controlled” and much less a process of guess-work.
  • I have a whole heap of art projects, and books on the go. I immerse myself in these when not working with all the intensity I devote to anything I do. I am really lucky as it happens, that all my favourite pastimes now necessarily can be done from home. It makes Lockdown much less of a disruption than it must be to more sociable, physically-able people.

This week, I will be carrying on writing up the analysis for the Advance Decision chapter. I will let you know next Sunday how things have gone.


[1] Incidentally, the widespread tendency to insist that any autistic speaking or writing be prefaced with the qualification that “I don’t speak for all autistics” is something with which I am profoundly uncomfortable. This is not because I believe it to be untrue that all autistic people are unique and possessed of their own individual “voice” but because this is so obviously true as to make me suspicious that the insistence on its repeated emphasis serves more than anything to atomise, depoliticise, and ultimately silence autistic “voice” and sabotage attempts at autistic community-building. Autistic people are (at least) as individual, and heterogenous as any other social group. However, our experiences of the social world and its oppressive and exclusionary nature, tend to be boringly, frustratingly repetitive.

Poem: Gratitude

Life. Singular.

Too vast to quantify in plurals.

Universes clumsily composed in the percussive discord of a heartbeat.

The chiseled sculpting of mountains in the flimsy mists of breath.

Each iteration a spectrum of wonders.

The most perfectly mundane of miracles.

As cadences intone avalanches.

And our personal phoenix re-imagines itself from dust.

So much from the ashes of so little.

The ripples continue long after the stone settles in oblivion.

Autistic Mutual Aid Fund – COVID-19 Donations Please!

Donate to the AUTISTIC MUTUAL AID FUND here.

Apply to the Fund here. 

These are tough times, with most of us reeling from the impact of Coronavirus. And with businesses, schools, and universities closing their physical premises, the supermarket shelves emptying, and plans being cancelled, we’re facing a disturbing present, and an uncertain future.

And for some members of our autistic community, the future is particularly daunting.

Many autistic people work as self-employed speakers, trainers, and other forms of autistic advocate. They perform a role that benefits all of us – autistic people, parents/carers, teachers, and health and social care professionals; and all who love and care for autistic people.
But with conferences and events being cancelled, and schools and other venues closing as a result of the ongoing COVID-19 emergency, they are facing a devastating cut in their livelihoods.

And we want to do anything we can to ‘give back’ to these members of our community.

So, we’re setting up a fund – The Autistic Mutual Aid Fund – with the aim of making life just a bit easier for our autistic advocates at this challenging time [Please note that the organisers of the Fund will not be eligible to claim from it]. 

Donate to the AUTISTIC MUTUAL AID FUND here.

Apply to the Fund here. 

Here is some information about the Fund:

Who/what is the Fund for?

The Autistic Mutual Aid Fund is for autistic people who are self-employed, working in the field of autism advocacy (broadly defined), who are facing significant financial losses as a result of the COVID-19 outbreak, and its impact.

It is intended to provide a ‘Helping Hand’ – covering relatively small, discreet costs incurred by people in this position. It is NOT intended to replace all, or most of the income lost; or to cover all of the outgoings of self-employed autistic advocates – a)because this is the role of the government; and b) because the fund is likely to be quite small-scale, and capable of making only small discretionary grants.

Examples of things that may be covered by grants from the Fund include, but are not limited to:

Costs of taxi travel where travel on public transport is not possible for either autism- or virus-related reasons; costs of equipment or software etc to move business online, and advertise new services; contributions to specific household/utility bills; costs related to maintaining autistic equilibrium in challenging times (e.g. purchasing specific groceries for restrictive diet, purchasing/replacing stim toys, replacing specific toiletries, or other sensory-related products that run out during period of income-loss.

Other requests will be considered at the Organisers’ discretion.

More about the Fund:

At the current time, it is uncertain how many donations the Fund will attract, and over what period of time. If the Fund proves self-sustaining, it is possible that there will be scope to continue it beyond the period of the COVID-19 outbreak, and perhaps to broaden its scope. 

Given the level of current uncertainty, it is possible that other, larger funds may emerge, with overlapping aims to this one. In such circumstances, the organisers retain the right to close the Autistic Mutual Aid Fund, and to donate any remaining balance of donations to the similar, larger Fund. 
All applications to the Autistic Mutual Aid Fund will be considered by the Organisers (Gillian Loomes and Shona Murphy), and granted at our discretion. Nothing in this publicity, or in the application survey, constitute an offer of a grant. 

The maximum amount of any single Helping Hand grant will be £100. It is possible that this may be revised in future, depending on the status of the Fund. However, we ask applicants to bear in mind that this is likely to be a small fund, and is intended as a gesture of support and ‘good will’ to make lives just a little bit easier in challenging times. We ask you to respect this gesture, by a) being thoughtful and sensible in the requests you make of the Fund; and, b) being understanding and respectful if the Organisers need to turn down your application for any reason.

Who are we?

We are:

Gillian Loomes
Gillian Loomes is an autistic scholar-activist. She held a teaching fellowship at ACER (the Autism Centre for Education and Research), University of Birmingham for several years, and has experience as a research consultant; including for the Autism Education Trust, the International Disability Rights Monitor, and the Essl Foundation. Her recent publications address topics relating the autism as social identity, ‘autistic feminism’, and the role of research participation and collaboration within the politics of disability rights. Gillian works for Leeds Autism AIM, and is a convenor of PARC (the Participatory Autism Research Collective). She tweets regularly, and can be followed @loomesgill.

Gillian’s website is voicespaces.co.uk

Shona Murphy
Shona is an autistic autism trainer. She has an MA in Autism, where she researched autistic parenthood, and also does consultancy in autism research, supports autistic people, and does a variety of voluntary work supporting and advocating for autistic people.

Shona’s website is shonamurphy.me 

Donate to the AUTISTIC MUTUAL AID FUND here.

Apply to the Fund here. 

I am a Writer

I write because writing is the frayed rope that secures my tenuous grasp on the shared delusion we call “sanity”. I write because I have things to say. I write because I have marks to make on the world.

I write because I have so, so many words somersaulting over each other in the troubled, challenged, foggy recesses of my mind – and they need to find their release. They need to fly, and to land, to take root, and to trace their own silver-spun routes to their homes in the fertile minds of others.

Words are my music.

But when I speak, those tricksy words are treacherous.

They don’t play by the rules – and the effort it takes to get them out in the chop-chop, twisted syncopation of speech, then to play helpless “catch” with my hands tied behind me; as equally tricksy, piercing, bullets are fired back at my exposed flesh, is almost more than I have within me. Sometimes, it is more than I have. And the words tumble to the ground and drown in tears.

The blood coursing through my veins threatens to engulf me, and the icicle finger tips, and the desert-dry mouth rob me of connection with self-expression.

But the leaden, weighty, black-white-black of words on a page is reliable, and safe, and free, and forgiving. And it contains my home – my refuge. It silences the tumult, and makes time stand still.

The time to write is precious – those gold sovereign seconds on the clock. Such magnificently treasured currency that it can be stolen from beneath hawk eyes. It is mercury slipping through glass. It is the hovering, shivering, silver needle in the sneezing haystack of bureaucracy – of fear, and panic, and endless impatient, entitled, fist-thumping demands.

And when that happens, I lose my “self”. It slips down the plughole with the waters of stolen time. And I find I am hopeless – homeless, and helpless; vulnerable, and drowning.

But those eternally vigilant, endlessly benevolent words on the page have always proved salvation to me.

And that is why I write.

And that is why I am a writer.

GLPhDProgress #1: Do (In)actions have Consequences? – Questioning accountability in the Mental Capacity Act 2005

[Side note: Happy New Year! I’ve decided I’m going to try to write a blog summarizing my PhD work, and related thinking, every week. Wednesdays are traditionally my day off, so now seems as good a time as any to get going…]

Why do we obey the law?

This is probably one of those jurisprudential questions that verges on the unanswerable, perhaps precisely because there are so many possible answers. And indeed, the question of obedience to the law has been debated extensively among legal philosophers (see, for example, the edited collection of readings on “The Duty to Obey the Law” by Edmonson, 1998). My aim here is not to try to provide an answer to this philosophical question.

But I have been reflecting on what “accountability” means in the context of the Mental Capacity Act 2005: taking as my starting point the perhaps rather simplistic assumption that if a law exists, its impact should be discernible in the consequences of its observance, but also of its transgression. I.e. If you break the law, you should hold a reasonable expectation of personal consequences as a result.

As I have been working through the analysis of my dataset for my current project (a textual ethnography of research ethics application processes for research involving participants who lack the capacity to consent – engaging ss.30-34 MCA 2005), I have noticed how many times I’ve referred to the “responsibilities” of the researcher – their “obligations” and “duties”, under either the law, or other forms of professional or institutional regulatory governance frameworks. And this has led me to question the nature of these responsibilities – particularly, what happens if the researcher fails to meet their legal obligations under the MCA 2005?

It has seemed rather difficult to identify any single, universally applicable answer to this question. But here are some of my findings and thoughts so far:

  • Institutions sometimes refer to the MCA 2005 in their ethics application forms, but they don’t always. When they don’t do this, they direct researchers working with participants who “lack capacity” to NHS research ethics protocols. If they do refer to the law, this may be to inform the researcher (sometimes erroneously) as to what the MCA 2005 “requires”.
  • The MCA 2005 sets out, in general terms, what is “required” of the researcher (although it is necessary to consult secondary legislation, and additional legal and professional guidance documentation for definition and clarification).
  • The MCA 2005 states that research that does not abide by the requirements set out in the Act is “unlawful”. However, it makes no mention of any consequences arising directly from such illegality.
  • I have been unable to find any cases where researchers experienced legal sanctions as a direct result of failure to adhere to the MCA 2005.
  • It seems most likely that consequences of failure to follow the Act may arise indirectly, depending on the type of research undertaken, and what this involves for participants. For example, if research involving the administering of a specific treatment is undertaken involving participants who lack the capacity to consent, and the framework set out in ss.3–34 MCA 2005 are not followed, the research itself is “unlawful”. This means that the treatment administered was given without the required “best interests” process set out elsewhere in the Act, and would therefore constitute assault/battery. It is perhaps harder to think how this may apply to research that is less invasive (e.g. research involving interviewing) – although as the obtaining of “intrusive” personal data via unlawful research may be construed as fraudulent, it is likely that redress may be sought via fraud, or data protection legislation.
  • My analysis of the full legal, ethical, professional, and institutional regulatory frameworks that apply to researchers working with participants who lack the capacity to consent has shown that the majority of “consequences” relating to transgression of the framework set out in the MCA 2005 are to be inferred from institutional/professional regulation mechanisms that indirectly invoke the Act – e.g. Research Governance Codes of Conduct that require researchers to follow any law relating to their proposed research undertakings. As such codes form part of the studentship/employment contracts existing between the researcher and the institution, personal consequences (e.g. dismissal for gross misconduct) are likely to be swift and devastating to the researcher.
  • This last point reinforces, and reminds me of how important it is that I research and understand the Mental Capacity Act 2005 as a socio-cultural structure that exists within a complex matrix of social domains. In this instance, the “reach” of the MCA 2005 is perhaps felt most acutely, not in the Court of Protection, but in the university Human Resources department.

I have also been trying to identify wider consequences of failure to adhere to the MCA 2005. The Act brought with it a new criminal offense – that of “Ill treatment or wilful neglect of a person lacking capacity” (s.44 MCA 2005).

Some case law involving this offense is available here: https://www.39essex.com/case_tag/criminal-offences-ill-treatment-wilful-neglect/

Another case of interest to my own research (that relating to Advance Decisions to Refuse Treatment) is that of Jillian Rushton: a retired nurse who received Clinically Assisted Nutrition and Hydration via a feeding tube following a brain injury, contrary to the provisions of her ADRT – seemingly due to a failure of healthcare professionals/organisations to maintain and communicate her ADRT. The case (NHS Cumbria CCG v Mrs Jillian Rushton (by her Litigation Friend) and Mr Tim Rushton [2018] EWCOP 41) is reported here (https://www.bailii.org/ew/cases/EWCOP/2018/41.html) – though is of limited relevance to the issue of sanction for non-compliance with the Act, because as Mr Justice Hayden made clear in the judgment, he was not asked to consider matters of responsibility for failure to adhere to Mrs Rushton’s ADRT, and did not address this in the judgment.

Lastly, for now, my own ethnographic work in the Court of Protection identifies a consequence for Local Authorities of failure to adhere to an aspect of the MCA 2005 that has widely been interpreted as a bureaucratic burden for LAs – the Deprivation of Liberty Safeguards (DoLS). On more than one occasion, hearings I had planned to attend were vacated at short notice, at the request of a Local Authority that was unprepared for the hearing. However, on one occasion, the LA in question assumed the judge would agree to vacate, and therefore did not attend the hearing. This was not, in fact, the case. The judge had not agreed to the request to vacate, meaning that an (unsurprisingly short and unproductive) hearing took place, with costs being awarded against the Local Authority.

I would like to expand this list of “consequences of non-compliance with the MCA 2005” – by adding themes, and details, and by considering the impact of non-compliance from multiple perspectives.

If you have thoughts or experiences to add, please get in touch!

Introducing Project Evaluation: How can it help our voices to be heard? [Video + Transcript]

Alongside my academic research and other arts and activism, I work for an advocacy organisation in Leeds called Advonet. Part of this role has involved being a work-based evaluator for a very exciting endeavour – the Leeds LGBTQ+ Health Inclusion Project. This is a project that uses self-advocacy/peer support, and the training of healthcare professionals to address the exclusion and inequalities experienced by members of LGBTQ+ communities who have “additional needs” (i.e. who are autistic, have a learning disability, and/or who experience mental health difficulties).

My role as evaluator involves observing the project as it develops – sitting in on self-advocacy workshops and training sessions, and talking to project staff, and participants, to find out what they think about its achievements. In order to do this, it is essential that I am able to build a rapport with all those involved with the project, but I’ve found a problem with this, as it’s been difficult to communicate what my role involves. This has meant that project staff are unsure how to introduce me, and people are slightly concerned as they don’t know what to expect from me. This is especially challenging, given the personal, sensitive nature of much of the discussion that takes place in the workshops and training sessions. I needed to come up with a way to communicate what I’m trying to achieve.

Alongside this, I’m keen to start a conversation within the voluntary sector more widely – to discuss how we evaluate ourselves: how we celebrate our many achievements, and how we make our work even better.

So – I came up with the idea of making a video presentation (using PowerPoint and YouTube), in order to communicate my ideas around project evaluation – and, particularly, how we might use evaluation as a tool to ensure that all those involved in our projects and partnerships have the opportunity to have their “voice” heard in taking the work forward.

This style of presentation/communication itself is a work-in-progress. Things I’m aware of so far include the fact that the video is too long overall, perhaps because I’m communicating to multiple audiences. I think it may be difficult to hold people’s attention for so long. I’m also aware that in places, the text on the slides doesn’t sync with what I say in the audio. This is because as I was figuring out my working method, I edited things considerably. In future, I think I’ll be much clearer about what I’m doing, and about how much content I’ll be aiming to include altogether, meaning things will be much more fluently presented.

I’d really like to know how else I might develop these kinds of communication tools (both conceptually and technically).

Here is the video. I’ll copy the transcript below:

Transcript

Slide 1

Introducing Project Evaluation: How does it help our voices be heard.

Welcome to this short film, providing an introduction to project evaluation– and explaining the evaluation of the Leeds LGBTQ+ Health Inclusion Project.

This film is for anyone involved with the project – including project facilitators, peer supporters, self-advocates, and funders; along with anyone interested in carrying out project evaluations for other, similar, projects.

A transcript of what I am saying is available in the “notes” section of the PowerPoint file, or in the description box below the video, if you’re watching on YouTube. If you have any questions, contact details are provided at the end of the film – feel free to get in touch.

Slide 2

Hi,

I’m Gill Loomes, project evaluator for the Leeds LGBTQ+ Health Inclusion Project.

As a disabled person, I care about disabled voices being heard, and as a researcher, I want to use my skills to make that happen.

In this short film, I explain what project evaluation is, particularly how it’s being done at the Leeds LGBTQ+ Health Inclusion Project, – including how you can get involved, and how it can help us to be heard…

Slide 3

The word “evaluation” can have different meanings. But, in broad, simple terms, it means something like “checking the progress or merit of a thing, according to agreed standards”. When it comes to projects like the Leeds LGBTQ+ Health Inclusion Project, this is often thought to mean checking whether the project is delivering “value for money”.

You might think that the process of evaluating a project, such as the Leeds LGBTQ+ Health Inclusion Project, sounds like a rather boring job, that produces pages of words and numbers that no one will ever read. Or you might see it as obligatory – something we have to do, in order to keep the organisations that fund our projects happy. And it is often the case that funders require projects to evaluate their progress – for example, the Leeds LGBTQ+ Health Inclusion Project is funded by the Government Equality Office, which requires all projects that it funds to provide evaluations – in order to check how funding is being spent, and also to provide information that might be useful to other, similar projects.

But, depending on how it’s designed and carried out, a project evaluation can serve another important purpose – one that should matter a lot to advocacy, and self-advocacy organisations: a project evaluation can be an opportunity for all those involved in the project to have their say, and to have their voice heard – about how the project is run, about the difference it makes in society, and about what is working, and what is not working.

In this way, an evaluation can be an opportunity to promote equality within a project, and to ensure that everyone’s voice is heard. As it says here – [reads quote above from House, 1993]

So, let’s take a look at how a project evaluation can work – and how the evaluation of the Leeds LGBTQ+ Health Inclusion Project aims to ensure that the voices of everyone involved in the project are heard.

Slide 4

There are 2 more slides in this film. They explore the following questions [reads questions on slide]

Slide 5

So, the first question we are going to think about is “What is Project Evaluation – and how can it help our voices to be heard?”

We can think about what an evaluation is by answering 3 questions:

How (is the evaluation done) – an evaluation looks at something systematically – that is, it’s organised, and happens according to a plan.

What (does the evaluation do) – it produces information about a project, and the effects of the project.

Who (is the evaluation for) – anyone who is interested in the project; how it works, and how it can be improved. 

We can think about what an evaluation considers:

Project goals: How has the project met their goals? Have their goals changed in response to the priorities of project participants?

Decision-making: How does decision-making happen within the project? Is it efficient? Who gets a say in important decisions? Who is responsible for making sure things get done?

Different explanations: When evaluating a project, how do you ensure that different views about the project and how it works are represented?

Different users: When planning what questions to ask in an evaluation, think about who is going to use the evaluation. What do project participants need to know about the project? What do project funders need to know? How do you ensure you ask, and answer the right questions?

And we can think about what is important to make sure that an evaluation helps voices to be heard:

The evaluation must be responsive to the needs of project participants.

It can be goal-flexible, ensuring that different goals prioritized by participants are represented.

It ensures that alternative explanations and perspectives are represented and explored.

And it considers the needs of all users of the project, and the evaluation.

On the next slide, we’ll see how the evaluation of the Leeds LGBTQ+ Health Inclusion Project considers each of these things in its evaluation.

Slide 6

The LGBTQ+ Health Inclusion Project works to improve access to healthcare services for members of LGBTQ+ communities who are autistic, who have a learning disability, and/or who experience mental health difficulties. It does this by organising self-advocacy courses, and peer-support for members of these communities, and by offering training, designed and delivered by people with lived experience of these issues, to healthcare professionals.

The Government Equality Office, which provides the funding for the project , needs an evaluation of how the project works, and what it achieves. It needs to be able to show how public money has been spent.

The evaluation also provides an important opportunity for participants to have their say about what has worked, and what they might do differently.

And we also hope that the evaluation will be useful to other people and organisations looking to set up similar projects, so that they can learn from our experiences.

In order to provide information about the project that will be useful to all the people who are interested in the evaluation, and to ensure that we provide all the information that is needed, the evaluation is in two parts: An independent evaluator (called Tia) will look at the project from the “outside”, focusing mostly on how the project has achieved the goals it set out to achieve.

Alongside the independent evaluation, I am undertaking a work-based evaluation to give participants an opportunity to have their say about their experiences of the project.

If you are involved in the Leeds LGBTQ+ Health Inclusion Project, you might well come across Tia and me at some point. We may pop into a workshop you are involved in – this is to see how the workshops run, and to look at what works well, and what might be organised differently. And it is to give people an opportunity to describe their experiences with the project.

A word about what evaluation is NOT:

It is NOT to record details of discussions that are taking place, or to “check up” on anyone involved in the project – and anyone involved in the project with any questions or concerns should feel free to speak to Tia or me, at any time.

Contact details for me, and for Advonet (the organisation hosting the project) are on the next slide)

Slide 7

Thank you for listening to this short film. Please feel free to get in touch about the evaluation, or about the Leeds LGBTQ+ Health Inclusion Project itself.

Thanks so much for checking out this blog – I’d love to hear your thoughts about communicating ideas, research findings, evaluations, anything…

Support and Self-Advocacy: How to Meet a New Support Worker

I’m quite used to being supported by support workers/PAs in different capacities – having had educational and employment support in different forms for the last 20 years or so. I’ve also BEEN a support worker. However, no matter how “used to” it I get, I still find the initial meeting with a new support worker – or rather, a worker in a new role, challenging and extremely anxiety/panic-inducing.

I’m not too sure to what extent this is impacted by my autism – I suspect my autism plays at least a contributing part in my discomfort, given that what I struggle with most is interacting with a “new” person. It just generally feels like I don’t know what to expect – what the person will say, how I might respond, what comes next etc – without having “learned” how a person communicates, I find it extremely difficult to predict what they might say in any given context, meaning I can’t prepare or “rehearse”, as I would before meeting with someone I know. However, I’m fairly certain that many people (autistic or not) would find being supported for the first time, or in a new context, challenging – so I hope that this blog might help.

Today, I met a new PA at uni. This is a different kind of support, to add to that which I already have in place, so I was very apprehensive. What we did during the session was to put together a list of things that it’s useful to know, in order to support me effectively. This list is not exhaustive – because of the nature of support work, you often have to work with lots of people, who only get to meet you at short notice, and it’s difficult to get information to your team in advance. So it’s important that the list is something that can be given to the worker at the start of the session, and that they can look through quickly without being “over-faced”. So the list prioritises things that someone needs to know as soon as they meet me – taking into account that at this point, I’m likely to be extremely anxious, and not as competent at verbal communication as I ordinarily am. Other things I can explain as I get to know each support worker over time.

I’ve also prioritised putting in writing aspects of my preferred support that go most against how support workers are trained, and what is perceived as “good” support (for me, the clearest example of this is the fact that I prefer support workers to make suggestions about what we might do, that I’m happy to agree or disagree with, rather than them leaving this totally up to me). I’ve found in the past that people can feel very uncomfortable with (what they perceive to be) “taking control”, so putting in writing that this is what I need in order for me to make autonomous decisions from the beginning can give “permission” for them to work in a way that is truly “person-centred” for me. For this reason, it was really helpful to make this list along with one of my support workers, in order to get her input about how support workers are trained, and what is expected of them.

I’ll have copies of the list with me at the start of each support session.

I’m reproducing it here, in case it helps anyone else to communicate with new support workers, or lessens their anxiety about doing so:

Introduction for New Support Workers

I’m Gill Loomes. I’m a PhD student – I have multiple physical disabilities and autism, and I’m a wheelchair user. Here are some things that it’s helpful for you to know, in order to support me.

Meeting:

  • It’s best to meet me in Disability Services. I’ll try to wait in reception, but I might need to go to the Quiet Room. If I need to go to the Quiet Room, I’ll let whoever is at the reception desk know that this is where I’ve gone.
  • As I’m autistic, I often experience extreme sensory overload and “panic” when meeting someone for the first time. This means I might not look at you, I might flap my hands and tap, and/or I might struggle to speak, and stutter. When this happens, it helps me if you give me time and plenty of physical space. If you want to talk to me, it helps if you start with my name (I prefer “Gill” to “Gillian”) in order to get my attention. Please DON’T try to finish my sentences for me.

Being Person-Centred:

I appreciate that you will want to provide “person-centred” support for me, and to enable my autonomy. For me, person-centred support includes:

  • I find open-ended questions very overwhelming and demanding (e.g. “what shall we do today?” “where do you want to go for coffee?”). It’s better if you give me a yes/no, or either/or choice (e.g. “Are we going straight to the library, or are there other things to do first?”)
  • As a PhD student, I mostly need physical support in writing up my thesis. I can tell you exactly what to do. I just need help with skills requiring fine motor co-ordination and arm mobility (e.g. typing, using mouse etc).
  • Please can you prompt me to take short breaks? – Approx. every 20 mins

Thank you very much.

Hope you find this useful.

I’d be interested to hear how other people get on with working with new support staff – or how support workers feel about meeting new people. What have you found effective? What is best avoided?