Words are tools.

Most of you who know me, know that I didn’t realise I was autistic until I was 30.  I’d spent my entire life before then being treated differently, not understanding why, and coming to the conclusion that there was something different about me, then flailing to uncover what it was. I settled on “weird”, “awkward”, “bad at people” and “a nerd”.  Those covered most of the social challenges I found myself facing.  Diagnoses of depression and anxiety then accounted – or at least put a haphazard label on – the agoraphobia, disassociation and long bouts of Inability To Manage Life that I found myself falling into. 

It was a friend’s pursuit of an autism diagnosis, and our friend group’s collective support and guidance through diagnostic questionnaires, that led me to my own neurodivergence.  Seeing myself reflected in my friend’s experiences, and realising that those experiences matched those of a whole community of people.   

I’ve told this part of the story before. 

It took time for me to embrace the term.  And at the time, I very definitely put a line between the notion of myself as an autistic person, and myself as a disabled person. 

That’s the part i haven’t talked about, yet. 

There were a few things that contributed to this feeling.  A big part of it, for me, was feeling like I didn’t experience “enough hardship” to “count as disabled”.  And a part of that, of course, was that I didn’t yet recognise all of the aspects of neurodivergence that I experienced. 

I occasionally lose the ability to speak.  It might surprise you to learn that I didn’t realise this was something I experienced until after I learned I was autistic, and read stories of other people like me describing their experiences. 

I am not non-verbal or non-speaking.  Rather, I find that my verbal skills are unreliable and tend to get worse as a reaction to chronic and acute stress.  Some days this might impact me as an additional clumsiness with words, forgetting how to say things, having long processing pauses and stumbling, stuttering and generally having a hard time speaking.  Other times, it can seem like there’s a block between my brain and my throat, and another between my throat and the world.   

The clumsy, stuttering end of my verbal spectrum was easily passed off as a symptom of either my “bad at people” self-diagnosis or my “anxiety” diagnosis.  The more severe end, well, to be blunt for a large period of my life the most significant sources of chronic stress were people who rather preferred my silence, so there wasn’t much pressure to communicate.  And where there was, again, it was easy to misunderstand my experience as one of “too anxious/scared” rather than “my body physically will not do it”. 

That misunderstanding/assumption/justification/minimisation cycle will be familiar to many late-diagnosed and self-identified neurodivergent people.   

I had this idea in my head, borne of a thousand tiny cuts, that there was some threshold past which it was acceptable for me to call myself disabled, and that I didn’t meet it.  An idea that had it’s roots in every time child-me saw an adult complain to another about whether people were “justifiably” using disabled parking spaces, accessible bathrooms or other resources.  In every “are they faking it” so-called news article trying to prove that a person using a wheelchair is doing so unfairly because they were seen walking a few steps at some point.  An all-or-nothing approach to the world that says that if an individual doesn’t exist on the furthest possible end of an experience of struggling then they aren’t deserving of support.  An approach that suggested there was something bad, or shameful, about being disabled, and that it was therefore best to avoid the label. 

Which is funny.  Because I’ve spoken before about the power and importance of labels.   

Of how, before I had access to the label “autistic”, I was instead given by the world the labels “weird”, “awkward”, “naive”, “rude” and “unlikeable”.  Of how, before I found my queer community and learned of trans identities beyond the binary I lived under the label of “bad at being a woman” and “mannish” and “technically a girl but failing at it”. 

Words are tools.  As one of my favourite musicians The Narcissist Cookbook says in their glorious song Gendering Teddy,  

“New words are new tools, which can be used to build a marginally better world right now, and maybe many, thousands of years in the future, these new tools that we drop and break and wield clumsily will be used in ways we can't even conceive of today; to build miraculous, unimaginable structures, with our distant descendants standing atop them, being the people that we always wanted to be.” 

When we have language to describe who we are and how we experience the world, we have access to tools that enable us to advocate for ourselves, to find community and common-ground with others, to raise a collective voice about a shared need.  It’s the reason people ban books, and try to legislate what can and can’t be discussed in the classroom. 

The social model of disability tells us that people are disabled by the environment and society.  That doesn’t mean we don’t have challenges related to anything internal to ourselves, as Nina Tame puts it very well in this article for The Valuable 500; 

“In contrast to the Medical Model, the Social Model states that, yes, I have a medical condition, but it’s the world that disables me. Now don’t get me wrong, that’s not to say that my Spina Bifida doesn’t come with pain and challenges. However, the societal challenges I face often disable me more than my actual disability. 

Put me in an accessible shopping centre where my wheelchair can zoom around, and I won’t feel disabled in the same way that I do when I can’t physically get in somewhere because it doesn’t have a ramp. Or the ramp is so steep that I need help getting up and down it. I can’t walk, but my wheelchair solves this problem. It’s inaccessibility that’s the disabling thing.” 

I have faced, and continue to face, challenges related to my autism.  I get migraines more than most people.  I can’t always tell when my body needs something until the need becomes urgent.  It takes me time to process my feelings around events and that can leave me vulnerable to manipulative people.  I don’t always understand other people’s emotions.  But the biggest challenges come from the way the world is set up to suit some people, not me, and the way those structures are invisible and unconsciously enforced. 

Disabled is not a bad word.  Any more than autistic is. 

I am disabled.  And I’m glad to have that word available.