Disability Life Is Ordinary Life. Except When It Absolutely Isn't.
Disability life is ordinary life. Except it's also completely fucking not.
This is something that makes perfect sense in my head and becomes hella tricky to explain once I try to put it into words, but bear with me.
When you live in the disability world, you're mostly just... living. You get up in the morning. You eat breakfast. You go places. You come home. You watch TV. You laugh at stupid things on your phone. Someone gets grumpy. Someone else is tired. There's washing to do and dinner to make and appointments you've forgotten about. We're all doing essentially the same thing: trying to get through our days, find things that make us happy, love our people and be loved by them.
Except disability puts this weird filter of difference over all of it.
The ordinary things require more planning. Maybe more equipment, physical help or communication. More thought, patience and people. Sometimes an absolutely horrifying amount of admin. Things that would look enormous to somebody else eventually just become... Wednesday afternoon.
And then occasionally something happens that reminds you that actually, no, this isn't remotely ordinary (at least for me). There are parts of disability life that are scary and exhausting and so unfair and so completely outside most people's frame of reference that you wouldn't even know where to start explaining them.
Then somebody needs lunch and off you go again.
So how the hell do you photograph that?
I think this is part of why documentary photography makes so much sense to me when photographing disability. Because I don't need a plan. I don't have to make disability look inspirational or make it look tragic. I don't have to hide the difficult parts to prove that this is a beautiful life, and I don't have to photograph only the difficult parts to prove that disability is hard.
I just photograph what is actually there.
The wheelchair can be in the photo without the photograph being about the wheelchair. The AAC device can be sitting amongst the leftover dishes from breakfast cos that's where it was left last. Someone can need physical help to move while simultaneously cracking up laughing about something. Someone can be overwhelmed and need space. Somebody can be having an absolutely shit time. And somebody can just be eating toast.
It's all life.
Sometimes representation doesn't need a fanfare
I think this is the part that I get most passionate about. When disability is represented publicly, there can sometimes be this sense that it needs to mean something. There needs to be an inspirational story or an educational message, a diagnosis explained or some enormous achievement we're all supposed to applaud.
I don't always love that. Can't disability just... exist?
Not because we're pretending the disability isn't there. Quite the opposite. It's there, it's just not required to be a performance.
Sometimes the photograph is about the cuddle. Sometimes it's about how funny somebody is. Sometimes it's about the relationship between siblings, or Mum making lunch, or Dad helping someone into their chair, or everybody sitting around doing absolutely nothing particularly interesting. That's representation too, and I think we need way more of it.
Because ordinary doesn't mean insignificant
There's another reason I think these photographs matter. Living disability life takes a phenomenal amount of work. There are people and families getting through days that contain things other people might genuinely struggle to comprehend, and then getting up the next morning and doing it all over again.
I don't mean that in an inspirational-poster kind of way. Nobody needs a sunset behind them with RESILIENCE written across the bottom. Gross.
I mean that I think there is something worth recognising in simply living your life. You are allowed to be proud of it. Proud of the things you've figured out, your family, your relationships, the strange systems you've cobbled together that somehow keep everything moving. Proud of the joy. Proud that you survived the truly horrendous times. Proud of a life that might look completely different from somebody else's and completely ordinary from inside it.
And you deserve photographs of it.
Not photographs that pretend disability isn't there, and not photographs that turn disability into the entire story. Photographs of your actual life. The funny and hard bits. The equipment. The cuddles and chaos. The quiet. The stoic despair. The completely normal things happening in completely non-normal circumstances.
Disability life doesn't need to be made extraordinary for it to matter, and it definitely doesn't need to be made ordinary so everyone else feels comfortable with it. It can just be documented as it is.
Weirdly normal. Completely not normal.
That's what I want to photograph.