Urban space is changing fast and despite the potential to increase urban space through growth, technology and social progress, the reality is often increasing exclusion and isolation. My own experience is one of a city increasingly paved over, squared off, noisier and lacking in calm spaces. Traffic, busy people and blank commercial facades have replaced more welcoming districts, because accessibility and family-friendly features are not a developer priority – they maximise borrowings, ramp up local property prices, take the increase in plot value and move on. Sustainable community is not a short-term money-spinner.
My perspective is very much the social exclusion and sensory impact of unsympathetic development. This post includes some images of Cork City and data maps of changing city demographics, at the level of the 74 electoral districts, to outline how the city is changing.
This is the full text of my chapter on sensory issues in public spaces, in the anthology “Knowing Why: Adult-Diagnosed Autistic People on Life and Autism”. The anthology presents contributions from a diverse group of people who were diagnosed autistic in adulthood. The book explores what it is like to feel so different, in so many ways, from other people without having known why; and then discovering that autism is not merely an explanation, but also an experience and identity shared by many others. Learning that your differences are autistic, even late in adulthood, is a positive event and useful knowledge for these writers.
The book contents are: Emerging From Burnout – Erin Human; Being the Dictionary: On Passions, Diagnosis, and Integration – A.J. Odasso; Sensory Issues and Social Inclusion – Stuart Neilson; Working While Autistic – Kelly Bron Johnson; All of Me: How Do I Know Where Blackness Ends and Neurodivergence Begins? – Morénike Giwa-Onaiwu; Using Intersecting Identities and Radically Accepting Communities to Increase Coping Skills – Samantha Hack; Autistic Navigation of Chronic Illness, Mental Illness, and Healthcare – Amythest Schaber; The Spectrum and Depression: Four Stories – M. Kelter; Cyborgs, Luddites, and To-Do List Apps: An Autistic Use of Technology – A.C. Buchanan.
A lot of the video I have worked with looks at the large-scale motion of crowds and traffic, with a focus on how social infrastructure can invisibly serve our urges to wander, or visibly obstruct and contain those urges – sometimes with increased conflict as different wanderers are constrained into competition within narrow spaces. Amongst that video, however, some have included people talking, expressing themselves through their words, their gestures, and through the tone of their overall body language.
Body language and tone are very hard for me to interpret, a common trait among autistic people. We see that body language is present, and perhaps its intensity, but it is like sounds in a foreign language. Misinterpretation is frequent (there is proof in the dents in my shins from being kicked under the table), especially when the spoken and the body language are sending different messages.
I like making photographs and find photography incredibly helpful – as a record of holidays and places, of the gas reading, or just to note the location of sockets on the back of the television; as a shield to deflect attention in busy places or to reduce anxiety in fearful situations (like zip-lining); or my favourite, photographing insects and minute things. The world is a fractal, with detail at all scales from continents to sand grains, so moving far away (in an aircraft) or zooming in close can be very interesting. No matter how far or close, the image always has details.
This is a weed leaf that blew off an extension roof. Taking a photograph at high magnification can be difficult because the depth of field (the region in focus) is very small, and only the front edge and water drop are in focus here. If you are wondering, this leaf is about 6mm (1/4″) wide.
Taking a sequence of images (twelve, in this case) focused progressively from the front to the back of the leaf saves a collection of “slices” of in-focus leaf at different distances. This allows me to make a composite image with the whole leaf in focus. (I used align_image_stack and enfuse to align all the images and then combine them into one focused composite).
This is the leaf on my forefinger, which is about 18mm across. You might notice a dark smudge on the stem, just below the front edge of the leaf. She is an early visitor.Zooming a bit closer reveals her to be an aphid of some form. She is about 0.8 mm long. I had no idea that she was there when I picked up the leaves, and only noticed after I had taken the first series of photographs.
The world is full of incredible detail like this, which we miss most of the time in favour of objects on our own scale and objects that have social connections. My family often complain, especially on holiday, when I get distracted by the beautiful details at ground level.
As someone with both an autism spectrum diagnosis and a history of mental illness, I fall into that intersectionality politely called ’dual diagnosis’, although it often feels more like ’falling between two stools’ than eligibility for duplicated supports. I am lucky to have won the postcode lottery and live in Cork City, the base of the only HSE-funded community support service in the country for adults with Asperger syndrome, where I get excellent social and other supports from Aspect, part of the Cork Association for Autism. I am unlucky to live in a country that otherwise has no services whatsoever for autistic adults (post 18 years) and where ’dual diagnosis’ means being shuffled between mental health services (as and when mental health is impacted) and social or disability support services. About 70-80% of people with Asperger syndrome also experience depression, anxiety and emotional difficulties. Suicidal thoughts are common and often difficult to identify. I want to share a particularly difficult recent encounter with psychiatric care that others in a similar position may find helpful to talk about.
Last year I completed a mammoth task of scanning photographs and duplicating colour slides that belonged to our parents, and sent electronic copies of everything to my siblings. The collection amounts to just under 7,000 images (about 300 black and white prints, 2,700 colour prints and 3,800 colour slides) which I scanned over about 28 months, leaving the equipment set up to scan little batches whenever I had spare time. There are some interesting technical and organisational challenges in handling a project of this size, but it has been well worth it. Buried in various cardboard boxes, envelopes and filing cabinets there is a wealth of shared experiences and meanings, like a kind of PECS (Picture Exchange Communication System) for all the emotionally-loaded background a family has in common. Now that they are indexed by country, year, event and participants, it is easy to locate specific examples of “it feels like this”, without needing to identify and describe the feelings. The methods might interest anyone else with a heritage of physical photographs, along with the feelings and sensations that viewing them has had.
I have been spending a little more time than I would like investigating health clinics, diagnostic procedures and hospital. A recurring theme for me is inadequate, conflicting or confusing communication of potentially important medical information. My own position is that I have a wide vocabulary and good verbal fluency, but my listening comprehension is sometimes over-ridden by my own preconceptions or overwhelmed by sensory and emotional overload. At my worst I babble very fast, repetitively ask for confirmation of the same answer or simply become mute. This confuses people.
I am currently in-between two abdominal surgeries, the first involving 3 nights recovery in Intensive Care and a further 4 in a ward; the second will follow 6 weeks of recuperation at home (in which I am barred from lifting anything heavier than a jug of water). Needless to say the delivery of a diagnosis of major surgery at 53 requires some emotional processing (which I don’t think I have really started) and a great deal of exposure to beeping monitors, machinery and over-lapping conversation.
The staff have been absolutely fantastic and extremely accommodating. There are some areas of procedure and infrastructure that I found confusing.
“The Sound and the Fury” is typically viewed as a difficult book, involving a stream-of-consciousness style and multiple perspectives to explore events the final throes of a plantation family in Mississippi just 30 – 60 years after the abolition of slavery in the United States. One of these perspectives is that of Benjy, a character usually described as an ‘idiot’ in the words of the twentieth century. He might now be termed ‘proundly intellectually disabled’. Some authors have identified traits they recognise as autistic. His correct diagnosis is not relevant to the depth that Faulkner brings to the character’s own mind and perspective in the first section of the book, written in the first person as the consciousness of an adult man who has no spoken words. Continue reading Autistic expression in “The Sound and the Fury” by William Faulkner (1929)→
I have been suffering from anxiety recently and, unlike Asperger syndrome, anxiety does cause me a great deal of distress. I do call anxiety ‘suffering’. I don’t know the answers to anxiety (or even, much of the time, where my anxiety comes from), but I have a few techniques for reducing or distracting my mind from anxious thoughts.
I read and loved “The Eagle Tree” by Ned Hayes, an absorbing and intense story of a boy’s love for trees and his intense fascination with the world and natural processes that surround him – an environment that, unfortunately, everyone else seems oblivious to. Amongst this natural beauty is The Eagle Tree, possibly the last Ponderosa Pine west of the Cascade Mountains. The tree can’t be saved, but perhaps it can be climbed before it is too late.