The other side of a glass wall

Dear Debriefers,

It’s been a long time since I wrote anything about disability.

A few years ago, however, it was my entire life: I used to work as a disability rights researcher and advocate.

Back then, like everybody else, I tirelessly called for the right of persons with disabilities to live in the community. This was especially important to me as I had been in and out of psychiatric institutions for much of my life.

But as I was advocating for people with disabilities be included in the community, I remember feeling uneasy at the relentless mentioning of this place. Everyone but me seemed to know what it was.

I would look around and wonder: which community? And why is it that I’ve found more community while detained in hospitals than in the city where I live?

The Debrief can commission original essays and illustrations like these because of reader support. Thanks to Betsy, Eric, David, Ina and Nadia for new contributions.

As if she had never seen me before

I grew up and still live in Brussels, the sprawling and multicultural capital of Belgium. I have never said more than “Hello” to my closest neighbours. I don’t know local shopkeepers or municipality workers, and they don’t know me.

Brussels is an anonymous city where being recognized on the street is rather alarming. I remember once attempting, at the busy lunch place where I went every day as a student, to order “the same as usual”, and the waitress’s face went blank as if she had never seen me before. I have never tried this again.

I live in a large apartment building near the European quarter where most residents are young professionals. Recently, I ran into my next-door neighbour in a metro station several stops away from home.

We acknowledged each other with a nod then, without another look, stood a few meters apart in the same carriage during the whole trip. After we both got down at our stop, I stood right behind her in the escalator. Still no look. We exited the station, walked apart, and arrived home with enough distance between us to not share the lift.

Sure, I am autistic, but I swear this was her doing as much as mine.

A shared reality made us close

There are two situations in which I have ever felt a sense of community. In both cases, I was surrounded with other people with disabilities. The first was the psychiatric hospital.

I was first put into hospital when I was 13. Throughout my teenage years and late twenties, I toured Belgium’s psychiatric wards.

In a psychiatric institution, everyone has already fatally strayed away from the social norm. Usual conventions didn’t matter anymore, so we created our own.

The most celebrated skill was the ability to hide prohibited items. Fashion statements were made with fancy slippers and fluffy loungewear, and when you needed tips or gossip, the place to go was the queue for medication.

We didn’t connect because we were all the same – in fact, we were an extremely disparate bunch. But our shared reality made us close. It wasn’t any reality: it was brutal, it was oppressive, and it was unfair. In the violence and chaos of being uprooted from our lives we were denied much of what made us ourselves.

So we looked out for each other. As children we smuggled plastic cutlery for each other to cut ourselves with. And years later, as adults, we besieged the fishbowl, aka the nurses’ station, to advocate for each other.

United in a common fight

The other time I felt part of a group was when working alongside other disability rights advocates.

Again, we united in a common fight. This time, it was not against a few nurses but against the whole system. We challenged ableist forces. With a devotion not unlike worship, we defended the UN Convention on the Rights of People with Disabilities (CRPD).

The CRPD made me revisit my whole story. I changed my vocabulary to adopt the movement’s shared language. The naïve “getting an injection and being tied to the bed” became “chemical and physical restraints”. “Involuntary hospitalisation” was replaced by “deprivation of liberty”.

Perhaps my favourite word of all was “coercion”. I am trying to think which other term it replaced, but I can’t, because coercion had no name: it was everything and everywhere.

What I had been through in those hospitals no longer felt like a stain. In fact, sometimes it was more like a trump card. It was easy, then, to feel belonging.

I had witnessed how isolation and segregation inevitably led to abuse. And I knew the only way forwards to be deinstitutionalisation and living in the community. In 2022, I shared my experience in a UNICEF blog post and called for “replac[ing] institutional care with comprehensive systems of community-based mental health support”.

As empowering as it was, membership of the disability rights community came with a price: surrendering personal stories to the movement’s narrative. I offered every ounce of my trauma to the cause until it was not mine anymore.

Eventually, it all became too much. I was still going in and out of hospital back then, and these painful experiences had become other people’s op-ed material. It felt like my life had been claimed as a collective experiment. I needed it back.

Loneliness of life in the community

Between the writing and the publication of the UNICEF article, I had already shifted away from disability rights work.

There was no other public statement. I got a job in a different field and I now fight other fights. Meanwhile, I have also managed to stay out of psychiatry.

I guess this is it. I live in the community, the big one. And let me tell you: it is a lonely place.

It is common among activists to refer the “disability community” or the “autistic community” as if we were all connected, or part of a club where we meet every week to exchange life hacks. But there is no such thing. We exist as isolated individuals and we fare alone.

Disability is a niche topic, people with disabilities are a scattered minority and most of those who would qualify prefer to stay away from the D word. My continuing obsession for disability inclusion makes eyebrows raise. Out of necessity, I too now resort to discretion.  

Passing as non-disabled

As an autistic person with excellent acting skills, I am both privileged and cursed with the ability to convincingly pass as non-disabled. This is called masking: hiding our true selves to fit into non-autistic culture.

Masking is a deeply ingrained survival instinct. At a very young age, I learnt elaborate stratagems to make friends while carefully concealing the fact that I had none. Even then I knew that the reason for my quest was also its biggest threat: nothing is more off-putting than a friendless person.

It isn’t all the effort, preparation and strategy-making that is the most alienating. It’s the pretending that they didn’t happen.

Take the example of a first date. Meeting up with a romantic prospect is a big deal for everyone. For me, it means hours of meticulous research. Before a date, I routinely look up the cafe where will have a drink together and read five years’ worth of online reviews, learn the menu by heart, deduce the location of the quietest area and, just in case, identify multiple ways to get there and back.

When the day comes, I show up fifteen minutes early. I hide around the corner until I can arrive nonchalantly late. After all, it is a casual rendezvous. I feign a spontaneous wish to steer us towards a table in the quiet corner, then act like I am discovering the menu and hesitating between a pils or a blanche beer. All along I know I will order an iced tea.

No wonder these encounters rarely lead to meaningful connections. So little was authentic from the start.

The rituals that hold groups together

Many of the rituals that make groups stick together don’t come easily to me.

A year ago, in search of a community, I joined a choir. We practice every Wednesday evening on one of Brussels’ university campuses. Singing together is powerful. We unite our voices, and at first it always sounds awful, but with practice, we can sound so magical that I get the shivers.

My singing improved with time, but my social progression quickly plateaued. I started noticing that, as chatter filled the auditorium before warm-ups, I was surrounded by multiple conversations and a part of none. Then it hit me: it was the drinks.

After rehearsal, I go home to get as much sleep as I can to survive at work the next day. Most singers merrily congregate towards to the student bar and it is there that their connection grows and sustains itself. I have come to the conclusion that the power of drinks and small talk to bring people together surpasses that of singing.

As you can perhaps guess from this piece, I bond with others by discussing deep topics. Some acquaintances take months or even years of innocuous conversation before getting to that point, if they ever do. I am more comfortable asking you outright for your take on the meaning of life than about your plans for the weekend.

Many of the more subtle avenues of relationship-building are not always inviting to us autistics. Of course, some community practices make more sense than others, and sometimes I wholeheartedly wish to take part. But then there are other challenges.

No community without shame

I am regularly asked to water friends plants when they go away on holiday – a common practice in a city where, as I explained, one does not expect such favours from neighbours.

My friends probably assume I will get there by bike or public transport, as I do when they see me. What they do not know, however, is that when we meet, it is then the only activity I can do that day. My forays into the world are so overstimulating that I need ample time to recharge in between them.

Every time I go on a houseplant mission, it is my father who drives me there. It’s to save energy so I don’t have to sacrifice the whole day. We don’t even live in the same part of Brussels, but my father is so relieved for these friendships that he will happily play his part to keep them going.

To give and to receive are fundamental community glue, and there is pain in not being able to give in the ways I am expected to. When it is my turn to go on holiday, I think twice before asking anyone to water my plants, knowing that the request will inevitably be returned.

Before writing this, I was far too embarrassed to have told anyone. It’s frowned upon to be a grown woman and still need so much help to get to society’s supposed baseline.  Since adulthood, my parents’ support has been as clandestine as it has been unwavering.

When independence, flexibility and self-assurance are valued above all else – not to forget selflessness and benevolence, for women – having a disability brings upon a cloud of stigma and shame. Unless, of course, you are paralympic athlete or a male mathematical genius, both of which are unfortunately out of my reach.

There is, perhaps, no community without shame. The disability rights community also cultivates its own values and brand of scorn. There is shame in using the wrong words, shame in departing from the sanctified collective narrative, there is even shame in doubt.

The other side of a glass wall

Constantly minimising the extent of my disability sometimes gives me the feeling of living on the other side of glass wall: almost there, but not quite touching, and always looking from the outside in. Maybe this is like what spies feel when they hide who they really are – except that instead of dangerous escapades, I conceal dreary exhaustion.

You can only get so close to other people when much of your experience is unknown to them. The result is weaker ties and shallower relationships. I live in my community, my building, my choir, my city, yet it feels that I am so lightly weaved in that I could slip away without leaving a hole.

I remember once overhearing a conversation between two friends. They were laughing about something, and the short one said to the tall one: “I’ll bury a body for you”. I had never heard that phrase before, and it struck me as the ultimate declaration of friendship.

I was immediately sure that nobody would ever bury a body for me. This is what loneliness feels like: failing to achieve sufficient closeness with those around me to be confident that I can rely on them in times of need. Should things ever go terribly wrong, I would probably not even call for help, unwilling to take an innocent soul down into the abyss with me.

It is perhaps paradoxical that only when I was living away from the community did I ever experience that kind of unconditional, loving and potentially law-breaking-level solidarity. I am quite sure that in the psychiatric ward, had I found myself with a body – let us imagine, the evil nurse’s – I could have counted on the assistance of many a volunteer to bury her together.

Belonging in no man’s land

Transitioning from professional advocate to solo disability enthusiast has had its ups and downs. I long missed the strict framework of human rights law and the unfaltering certainty of being right just because the CRPD said so. But however much I appreciate things being black and white, I have come to accept that they are rarely so comfortingly simple.

Meandering towards the roots of unbelonging has led me to realise that behind the institutions-community binary are countless shades. It was only with the distance of a fading loyalty to the disability rights movement that I allowed myself to reflect about the grey areas.  I have now recovered from the pressure to embody disability rights principles.

Enough shame, enough hiding. Today I am coming out twice: to the disability rights community, as a bad activist who reminisces fondly about psychiatry, and to the friends with whom I will share this article, as someone unable to water plants by herself.

Is there a middle-ground? Something in between being a poster child of antipsychiatry and hushing my disability up as an embarrassment?

Perhaps where I really belong is in a no man’s land. Somewhere I can define my own narrative and claim it as loudly or softly as I want, with whatever words ring true. Somewhere I can interact with different communities on my own terms, without shame.

That land may be rugged, it may be solitary, but at least it is free.

And who knows, I might meet some of you there.

Lea

Acknowledgements

Thanks to Kinanty Andini for the illustration.

Thanks to Peter for his editing and our rich conversations that guided my reflection to new places. I’d also like to thank Alberto Vásquez Encalada for encouraging me to write for the Debrief.

And, of course, thanks to the individuals and organizations whose support makes the Debrief possible.