Today my heart hurts. It hurts for my son and the world that we live in. One where disabled people are neither considered worthy nor important. Now that the tears have dried up, the anger has set in.
Let me explain. I spend a lot of time alone with my son. Finding activities that are local, accessible and affordable is not easy. I experience high levels of anxiety when exploring new places with my son because I don’t know if he will be able to cope with the experience or if it will be difficult for us.
This morning I plucked up my courage to go to a local aquarium. I’ve been there before and I know that while it’s pricy, it’s accessible. Kasper is showing more interest in the world around him and I thought it would be the perfect place to visit with him. So, off we went. Kasper watching the fish in the tanks He made his ‘fish’ sound and tottered about the place squealing with joy. So far, so good. Then we reached one of the lifts: out of order. Right, what next? I looked around for a button to call for assistance or a phone number to call for help. Nothing. The stairs loomed before me. Surely there was a solution. Parents obliviously went around us, climbing the stairs with their able-bodied children or sending their developmentally on track children up the stairs while they carried up the stroller. Panic began to set in.
Like an angry fool, I collapsed the stroller and snatched my 15kg son up and I powered up two flights of stairs. Sweating and out of breath I arrived at the top thinking “what the actual F?!” We finished the tour and I went straight to the front desk and explained that I had just had to carry my disabled son up two flights of stairs and his stroller with no assistance. I asked what they planned to do in the future so other families wouldn’t be put in this situation again. I’ll admit, I was not good at keeping my emotions in check. My voice kept catching and the tears in my eyes were dangerously close to spilling over. I’ve never really been the type of person to complain. We used to cringe as children watching my mum complain about various things (although, to be fair, she ALWAYS gets upgrades in hotels when she complains). But, this was not complaining, this was advocating. This was new to me and it felt raw and unpleasant. The woman at the front desk listened patiently and went to speak to a superior and came back with a free toy and a free ticket for next time. I left feeling dazed and vulnerable. As I paid for parking, the tears started to spill over. I’d asked for solutions so that this didn’t happen again to anyone else and I’d left with a stuffed toy and a ticket. I was mad as hell.
I felt like I’d failed at advocating. I’d done half a job and a terrible one at that. I could feel the anger boiling in my veins as I drove my son home. I squinted at the road through tears and had several realisations. Yes, I was able to find a solution (carrying my son and stroller) but what would a disabled adult have done? Would they have been expected to drag themselves and their wheelchair up two flights of stairs? Would they have been warned in advance before entering the aquarium? Where was the sign warning people that the aquarium was temporarily inaccessible to disabled people? Where was the number so people could ask for assistance? Where was the discussion to reassure me they would work on a solution?
What hurts my heart the most is that I witnessed the tip of the iceberg of ableist BS that disabled people face every day. You may think I’m making a mountain out of molehill but I see things differently. Failing to warn people of a broken lift shows how unimportant they are to you. Disabled? Figure it out yourself. You don’t matter to us. Your safety doesn’t matter to us. Your experience doesn’t matter to us. You don’t matter.
The broken lift represents a broken society, one in which my son is not seen as a worthy human. This time I could carry him but what about next time?
As I write this, my back hurts and my heart hurts. My son matters and shame on you for not thinking so too, aquarium.
