Electric Pilgrimages: Reflections on marking autism and neurodiversity’s links to the wider ghosts of disability history

?The following essay is written entirely in my personal capacity.

?Fellow People, Ambassadors and Campaigners

?Autism as a scene, whether pro-cure or anti-cure, has inherited the spooky ghosts of wider disability history. There are physical places which symbolise this history. Sitting at two different poles of danger, two of them are:

The spectre of total elimination in the form of eugenics symbolised by the T-4 Memorial in Berlin. Hundreds and thousands of disabled people were killed by the programme in centres across Germany as well as other people being sterilised. It was the model for the genocide that the Nazis unleashed upon other minorities including six million Jews in the Shoah.

The spectre of total forced, high handed, assimilation in the form of Milan and the second International Congress of the Deaf in 1880 which proclaimed eight resolutions. Among them were that:

“1. The Convention, considering the incontestable superiority of articulation over signs in restoring the deaf-mute to society and giving him a fuller knowledge of language, declares that the oral method should be preferred to that of signs in education and the instruction of deaf-mutes.

2. The Convention, considering that the simultaneous use of articulation and signs has the disadvantage of injuring articulation and lip-reading and the precision of ideas, declares that the pure oral method should be preferred.”

?The eight resolutions of the Milan Congress were opposed in the US and in the UK, part of a wider chain of events, but the impact of a group of international professionals making a declaration that led to deaf people being forced towards a form of language that wasn’t their choice is powerful and shouldn’t be ignored. These ghosts are acknowledged but not entirely commemorated.

Inspired by that history, I made two mostly high-speed train journeys (other forms of transport including taxis and S-bahns were used) over the course of several years to specific points in the cities of those two ghosts. I had to fly on the way back for work reasons for both trips so made a donation to the Woodland Trust as a loose form of carbon offsetting.

The reason why I’ve chosen to write about them ?

I made both pilgrimages for a number of reasons including personal reflection. For Berlin I’d wanted to go ever since I heard that a memorial had been dedicated to the victims of the Aktion T-4 programme. For Milan, ever since I’d become aware of what happened at the International Congress of the Deaf, I’d wanted to see if I could find something that marked the place it happened. At the dawn of the autism scene analogies to the deaf community were cited as something for autistic people to emulate. ?Despite my own scrapes I became intrigued by deaf culture and deaf history, as well as doing the occasional sign language session. I’ve also got tinnitus in my right ear and glue ear so I’ve always thought Milan was worth remembering and visiting for personal reasons as well as historical. In a way it’s kind of fitting as historically pilgrimages have been a time of both spiritual reflection and tourism.

The first trip began on 16 October 2015 when after a lift from my mother I travelled alone from Audley End in Essex to Berlin via Brussels and Koln and was met by mum at Berlin Hauptbahnhof station. After going to our hotel the Adina apartments near Checkpoint Charlie in Berlin we then walked together to the Tiergartenstrasse T-4 Memorial the next day.

The second one, seven years later, was a solo journey. I travelled to Milan from London alone and spent some time at the Best Western Hotel Madison before travelling to Tuscany by train to meet my family..

There was no real symbolism behind my dates in going to Germany. It was that I needed a bit of spiritual reflection and went after the main school holidays to avoid me being unduly overloaded. ?Truth be told with Berlin and the T-4 Memorial I could have gone on any given day and no-one would have batted an eyelid. The area where the Tiergartenstrasse Memorial is nearby other memorial sites too so I would have “fitted in regardless”.

However because of circumstances related to work I travelled to Milan on All Hallows, aka Halloween, a time associated with ghosts and spooky things going on (fitting for a community that can feel like it’s always Halloween half the time). I left London at the crack of dawn for a Eurostar to the Gare Du Nord, I then took a hop on the RER to the Gare De Lyon where I got a TGV Lyria to Zurich before the final leg through the great Gotthard Base Tunnel on a SBB Giruno low floor high speed train to Milano Centrale. I travelled to the Piazza Mentana on All Saints Day, a public holiday in Italy. A good thing too as going on a school day, spending as much time as I did in the Piazza and taking photos would have caused far too many misunderstandings as there were lots of schools in the surrounding area and a university building as well as a hotel. So, it was a case of taking my shot appropriately.

I walked to Tiergartenstrasse with my mother. Tears threatened to run down my face but didn’t as I passed by memorials and buildings including slabs of the Berlin Wall. Berlin has had a long history since its founding in 13th century with more than its fair share of pain, whether as a united or divided city. Seeing the memorial to the 16th of June protests during the East German Uprising of 1953 was a stark reminder that what happened at Tiergartenstrasse was just one chapter in that history. Albeit it was?a largely ignored one given that the memorial wasn’t in my Lonely Planet guide book and in the end we found it on Google.??

?As I walked up from Postsdamer Platz past the Sony centre onto the street the emotions were threatening to turn me into a mourning wreck but I didn’t cry. And then I saw it. The brilliant blue memorial on a nine degrees Celsius day with its panes of glass standing in space in a form of no man’s land with its metal bench and information stand providing a kind of barrier keeping me back from approaching the memorial. This made it stand apart from society just like disabled people had been and in many ways still are. What was comforting though was that there were a lot of people on that day who had come to see the memorial. I didn’t manage to talk to any of them but their presence was nice and reassuring to see.

There are other memorials around the area too and I saw the black square of the window of the memorial to LGBT victims which is nearby. Both minorities, disabled people and LGBT, had their histories suppressed and weren’t acknowledged. Until the present day memorial, a small plaque was at the spot from the 1970s before an earlier statue and the present memorial. Finally, I went to the imposing concrete block gridded maze of the Holocaust memorial on the appropriately named Hannah-Arendt-Strasse. She of the banality of evil reminding me of just how many people had died as a result of the Nazis. In the memorial I felt the world enclosing in on me with the small grey stone square columns rising upwards.

I didn’t go inside the Shoah Memorial in Milan although I saw outside of it underneath Milano Centrale.?Anxiety got the better of me as I was getting my bearings as a solo traveller abroad on my first full day. But I also didn’t go because there was something about what I was focusing on at the time which pushed against me: not the elimination of life but the control of life. One group of people, in this case non-deaf educators, placing a definition on another group of people, deaf people, and prescribing a course for them that although not directly deadly was not what they wanted for themselves which had consequences for their standing in society. As someone who could loosely be called a practitioner this is something that haunts me and means that I can be far more hands off in terms of my approach than some people might expect, precisely because I don’t want to push people down a route.

In the time period between my pilgrimages, it is clear that the autism world is starting to deal with these ghosts, especially over eugenics, although not commemorate them. Disabled people have spoken at previous Holocaust Memorial Days including the last virtual one in 2022. The film “The Reason I Jump” also mentions eugenics with its sequence with Jestina in Sierra Leone both in the past and in the present where lethal stigma is still alive and well. Although “developing” countries don’t have the monopoly on eugenicist thoughts - ask Uematsu Satoshi, the murderer of several people at a care home in Sagamihara in Japan. Or the very English, Knight of The Realm, Sir Francis Galton, the father of eugenics. ?

Seven years later, it was a temperate and wet afternoon in Milan when after a nervous morning getting my bearings around my hotel I took a yellow and silver metro then navigated twisty streets to my destination seeing yellow trams too. On my way to the Piazza Mentana it was raining heavily but as I approached the Piazza the rain stopped.??

I searched the Piazza and spent around an hour there, leaving as the light faded, but I couldn’t find a particular version of a plaque or memorial. There was a memorial to the Battle of Mentana and a plaque about Giuseppe Garibaldi. But nothing openly and clearly commemorating the International Congress of the Deaf. Maybe in the emotional current I was in I missed the QR codes that were around but I could see no memorial. At least not in the square.

Aftermaths?

After my main pilgrimage to the T-4 memorial Mum and I ended up in the Miele café where I had a chance to reflect and that was where my pilgrimage ended, or did it? In the days that followed two things happened. I encountered people who were part of some kind of centre around Checkpoint Charlie. We also saw that disabled people took their place as part of wider history at the Federale World War II war memorial with the rest of the different groups who lost their lives as part of the Nazis’ pursuit of perfectionism. People being part of a wider whole to be remembered.

In contrast. the rest of the trip to Milan and Tuscany afterwards was dedicated to exploring some interesting places, seeing many different cats, having tasty food and snarling in frustration at my beyond-shreiklich Italiano (something that Brexiteers will chuckle at, aber mein deutsche ist ein kleine druck besser!). Which itself raises an interesting point: What might have been had the resolution at that Congress not been adopted and Oralism had been kept at bay in terms of supremacy - would we all be bilingual? ?The campaign to make British Sign Language a language that has formal qualifications such as GCSE Speaking languages and signing language would perhaps not be needed, as sign language could have been integrated into primary and maybe who knows pre-school language! Ironic since Makaton has become in use for babies and people with Downs Syndrome.?Maybe Brexit wouldn’t have happened as we’d have less reticence to use other languages (wishful thinking though on my part, given the issues around power, identity and control that were brought up). Having said that, we are dealing with the reality of the situation that we have. ?It should also be noted that Milan is trying to make strides in autism accessibility as well as for other disabilities. The hotel I stayed at is autism-friendly and I had a really good time there for all my social awkwardness! ITA Airways, Alitalia’s successor, has an autism scheme which I inadvertently missed out on. So, things are going forward for disabled people away from the shadows of the past despite a whole lot of challenges whether over employment, accessibility or otherwise.

At the end of the day though, I hope that I’m not the only person who makes these journeys. As it shouldn’t be just people like me who make these trips as independent citizens who dabble in history. Hopefully more senior people in the autism scene and the wider neurodiversity one will, where possible do so, as well as people in public life who might not normally make this type of pilgrimage.

After all, just as politics shouldn’t be the preserve of people who are party political nor should commemorating history just be the preserve of people who have a strong interest in it. Both arts are part of appreciating ourselves as humans and making more effective decisions that put people in charge of shaping their own destiny for themselves, whether autistic, deaf or other people.

For individuals in the autism scene, whether pro or anti cure it’s about reflecting on where your scene has been and what you are part of. For the charity sector and other organisations including user-led ones it’s about building a bridge between the practical and the abstract in maybe looking at the foundations that underpin what we do. For the scene as a whole it’s about viewing our communities in the wider context of society and the maintenance of democracy. Seeing it as a form of exploration and allowing us to be ourselves. Connecting to where we’ve been so we can figure out where we’re going next as well as the pitfalls to avoid.

In parting, my true coda to my pilgrimage in Milan and perhaps both my electric pilgrimages came in England later during November 2022. This was when, glutton for interesting experiences that I am, I went to the British Association of Supported Employers Conference in Leeds for my day job as a Job Coach two days after I came back from Italy. Admittedly I was mostly zombified throughout it, however there were some very interesting discussions, including at the gala evening on the first night of the conference when I mentioned my pilgrimage to a person sitting at a table with me. She said that they’d worked with a Deaf candidate and as part of reasonable adjustments around training their employer they’d taught some deaf history to them. So, if Deaf people are using history to enable people to understand them then we should be more willing to explore and promote disability history as part of our own story just like every other minority group. That way we understand the human condition in all its forms whether the scientific side or the human one.

After all, how do you know where you’re going if you don’t know and fully acknowledge where you’ve been?

Written with much thanks to Cath Martin at Travel with Cath and the Best Western Hotel Madison in Milan. In memory of John Searle Barnes who inspired me to think about and appreciate the wider world in its different interesting forms especially politically as well as cinematically, he will be greatly missed.?