Saturday 28 January 2023

On love, in the face of fear


A rainbow coloured umbrella sitting upon parched cracked dark soil

In recent days, the autistic communities have sat in shock or bemusement at an article which was written about some of us.  Me included.  

It is not clear what the author was trying to achieve. 

What it did achieve is an outpouring of love and concern, from so many in the autistic communities.  Yes, certainly some shock and anger also.  So many rallied round those who had been mentioned in the article, to offer their encouragement, support and affirmation.  So many others sat in small groups, holding one another close and letting tears of dismay fall.

The odd thing, amongst it all, is that the author who had penned those words has a long track history of supporting - and writing about - minorities.  About how important it is to encourage and uphold them.  About how important it is to include and listen to them.  About how vital it is to benefit from their experiences.

And yet, somehow, that journalist hasn't yet made that next step of understanding.  That autistic people are also a minority.  That we are also in need of encouragement and support.  That we are also human beings, able to express pain and shock, fear and dismay.  That sometimes the impact of oppression is the creation of anger against injustice - and yes, it can be hard to hear that pain, pain that comes from a lifetime of oppression.  Being clear straight away that I do not condone any illegal action or any action that breaks the rules of social media. 

Good journalism is about being inquisitive, something that the author has shown in good measure in previous articles.

It's about thinking, "What was it like for that person, to live that life?  What is it like now, to experience what they experience in their lives from those with power and prestige?"  It's about that painful opening of memoirs, notes, letters, blogs, books.  It's about listening and hearing beyond any temptation to think, "It sounds like they are being rude for no reason - I shall not listen".

Hearing pain...listening and loving....that takes courage.  And goodness me I see acts of courage around me so often in the world we inhabit.  

Autistic people are Mums, and Dads.  They are neighbours and friends. They are colleagues and companions.  They are faith leaders and artists, musicians and philosophers.  So many hiding, because of the cruel narratives out there - because of the power that others have to harm them if they disclose.  It's why I have been pleased to work with so many kind and generous allies who have laid down that power and control, and who have wanted to listen to a wide variety of autistic people.  It's why I have spent a lifetime working thoughtfully for social justice in various ways, for various groups, including those needing safe spaces in Refuges.  

I encourage good critique of potentially damaging materials within my role in the Critical Autism Studies academic work I do.  A reality we know from good research is that so many autistic people lead lives filled with ostracism, hate and violence from others.  So many have diagnosable levels of trauma as a result - another reason why the assumption that we have equal power in discussions needs testing and challenging.  It is so important to challenge narratives that portray people as less than human, perhaps - or as people who are nothing but a burden, a disease, a deficit.

Autistic people are often also part of the LGBTQ+ communities, often part of the Black and Asian communities and other minority ethnic groups.  Many are living in poverty, and in lifelong physical pain, anxiety or depression, because of the challenges society places in their path.  Many are women who experience all of the targeting and marginalisation that so many other women experience in society.  This intersectionality makes life harder, and harder, for many - because of the multiple layers of misunderstanding or hate that may be found, from some.  Autistic people are of every age, and the older ones amongst us are facing a fairly bleak future because of society failing to even realise most of us existed, let alone make retirement doable for us.  Those of us who also act as carers for family members are left wondering what on earth the future holds.

Autistic people may sometimes be erased from opportunities to contribute, made out to be either too incompetent to listen to, or too competent to listen to (go figure...).  The standard routes of being heard are often closed to us, and usually any passing nonautistic person is believed to be more expert in autism than any of us who have lived it and studied it academically for many years.  Some give freely of their time to news outlets, and then have their words misportrayed or altered to fit whatever negative narrative those in power want the public to think.  It's awful.   It's why so many use whatever social media they can manage, to try to be heard.  Even that is frowned upon.  How much erasure is too much, eh?

Our loved community members may also have intellectual disability, communication needs, epilepsy, pain conditions etc - but are so often left out of discussions on what really matters to them, what really improves their quality of life.  Very glad of the big survey and new research trying to put this right.  Their input matters.

Every autistic person is a person of full worth, fully needing their human rights, fully needing their voice to be heard....and their pain to be heard.

I hope, and pray, for myself and our lovely family.  For our friends and allies, our colleagues and acquaintances across the autistic communities and the wider neurodiversity, disability, and other marginalised communities.  For a life where we can put our proverbial arms around each other - and around others we love - and know love, peace & happiness at last.  

Until then, we keep hoping..and praying..and walking alongside one another through the fires of hell that some in society have placed in our paths.  

Perhaps one day society will stop lighting those fires, eh?