Nem Kearns - Before I discovered the word disabled for myself, I struggled silently and in confusion.
I can tell you a little about myself: I am a dyscalculate, autistic person with ADHD. I’m also mobility-impaired and had chronic depression for over two decades, beginning when I was about eight years old. I am disabled. But I’m probably not who you think I am.
I’ve worked on election campaigns and in the Oireachtas. I’ve been a music journalist, won awards in a call-centre and worked in the headquarters of Together for Yes. I’ve spoken at conferences, consulted on research and sit on the Board of a national organisation. I was a bank manager and the department head of a financial consultancy company. I am disabled.
I also sometimes can’t get out of bed. I can forget to eat for days on end and sometimes struggle to make a sandwich. Too much sensory input can push me into meltdown. Standing still can leave me trapped in agony for nearly a week. Occasionally I lose the physical ability to speak. I am disabled.
Before I discovered the word disabled for myself, I struggled silently and in confusion. I was always wrong, weird, defective - I don’t stare into people’s eyeballs for extended periods of time or understand why that’s so essential. I move my hands and my body in ways that are somehow, ineffably, not the ‘right’ way. I get too excited about the ‘wrong’ things and express my happiness ‘incorrectly’. I don’t say what I don’t mean and I expect others to do the same.
When I was younger, I was an outcast everywhere I went, to be shunned, bullied and mocked for reasons I didn’t understand. The bully who terrorised dozens of children could be redeemed and forgiven but I was deemed irredeemable for the much less tolerable crime of ‘not fitting in’. No matter how hard I tried, I was lazy. No matter what. I thought I meant by my words, I was wrong. No matter how much I tried to please, I never did. If I spoke I was rejected for being too loud. If I stayed silent I was loathed for being too quiet. I began to hate myself because everyone around me hated me. They insisted they knew better when I thought I was trying my best, or meant what I said, or was confused and not defiant, happy not angry - if I was always wrong, even about my innermost thoughts and feelings - did I even have an identity to begin with?
I had diagnoses, but I was told I couldn’t let those define me. That would be giving in. I was pressured to accept that a diagnosis wasn’t meant to help me understand who I am, where I struggle and where I shine. I was pushed to believe that diagnosis only tells me where I’m defective, so that I could try to ‘fix’ myself and be more like everyone else. I was drowning in a sea of impossible expectations and a universal rejection of the idea that who I am is who I’m meant to be. I spent a lot of my life not wanting to live, day after day, month after month, year after year. I was told I was a ‘normal’ person who just needed to try harder - I wasn’t like one of those disabled people, I could be better. I was never ashamed about identifying as disabled, I felt like I didn’t deserve to. I had been hammered with the message that being disabled was an extreme and rare thing, that disabled people aren’t like you and I, that ‘we’ should always be grateful that we’re not like ‘them’.
When my fellow disabled people gave me the permission I needed and welcomed me to join them in their wide and many-threaded identity, I felt relief. I felt at last I could breathe. I felt I could finally put down the burden of constantly having to pretend I didn’t struggle and instead start to want to live again. I began to know myself, I learned how to accept myself, I even began to like myself (sometimes!). I no longer had to be a barely surviving ‘normal’ person, I could become a thriving disabled person. Calling myself disabled felt accurate, it felt freeing, it felt home.
It did not feel dirty.
My differences are part of the natural range of human diversity, but are treated as something alien and shameful. My neurodivergent brain shapes how I see the world, how I experience emotions, listen to music, express myself, create, think and live. It is glorious and it is painful and it is messy and it is fully, fully human. It makes me me.
This is who I am and - to be brutally honest - I don’t see why I should have to be any other way. What does my making eye contact add to your life, what does my not take away?
What is the right way to express joy? Surely it’s easier to change our expectations of ‘normal’ than it is to expect entire groups of people to change who they normally are? Why are people like me expected to distance ourselves from our identities and treat them as something external that should be removed or who’s importance should be denied: not autistic, but ‘person with autism’ or ‘suffering from autism disorder’. Not disabled, but ‘with disability’, ‘differently abled’,‘handicapable’ or ‘special needs’. My needs aren’t special, they are human. Just as human as yours.
I am disabled because social expectations and physical environments aren’t made for people like me. I am disabled because we, as a society, have chosen not to enable complicated people like me.
I am not enabled by an educational system that values conformity and the ability to perform attention externally. I am not enabled by a work culture that expects me to jump through the myriad hoops of high-pressure unscripted conversations based on inferences and indirect questions while simultaneously being judged on my ability to sit still, maintain eye contact and be charming - just to do the unrelated work I’m being hired to do (and can do well). I am not enabled by social expectations to remember the names of all my colleagues’ children or to stand in loud pubs or to have reliable health so I don’t cancel plans or to talk at length about the weather and the weekend and never forget a birthday.
I am not enabled by a society that judges my value based solely on my ability to consistently generate profit at the lowest maintenance cost. I am disabled by all of these things. I am disabled.
It’s what I ask to be called, it’s what I choose to be called, it’s what describes my experience, it’s part of my identity, it’s what I am. It is not a dirty word.
Your refusing to say the word doesn’t help me in any way, it just sends the message that your momentary comfort is worth more than my right to my identity, my full humanity. I am disabled, but non disabled people seem to think that’s too horrible to voice aloud and often fight to stop me from saying it. But I can’t help but notice the words they have no
trouble saying:
That’s dumb.
That’s lame.
Are you Deaf?
Are you blind?
You psycho.
I’m so OCD!
They’re so innocent, like children really, they don’t understand what’s best for them. If only people with underlying conditions are dying, is it really worth the rest of us suffering? That politician is autistic, these kids aren’t special needs - they’re normal....
Disability isn’t a dirty word - you can say it. Disability isn’t something furtive and lesser, to be hidden in shameful corners. When we continue to hide from the word disability, we continue to perpetuate a discomfort with, and an inability to accommodate, disabled people in our shared spaces. Our impulse to omit, to ignore, to deny, to turn away and hide from the reality of the word allows disabled people to continue to be hidden away: in institutions, in family homes, in ‘special schools’, in secrets kept.
I’m not a burden.
I’m not an inspiration.
I’m not broken.
I’m disabled.
It is not a dirty word. It might have saved my life