Disability pride, shame and grief

July is Disability Pride Month.

Pride months and pride events are a curious phenomenon. If you’re not part of a minority and as such haven’t experienced a pride month from the inside, then it might be tricky to understand how it can feel. Even my own feelings, as someone who fits under the disability and LGBTQIA+ umbrellas, are far from universal. I have a complicated relationship with both of those aspects of myself, and that comes to the fore when their respective pride months and events roll around.

I remember speaking to my mother once about pride parades. She’s one of the more conservative people in my inner circle, and we have a lot of love and mutual respect built on a lot of open discussions, especially since I realised that I’m non-binary. She expressed that the idea of pride parades unsettled her because pride isn’t exactly classified as a virtue – it’s seen as a sin, alongside things like arrogance and conceit.

But I explained what the ‘pride’ of pride parades was really about, as far as I’m concerned. If I said to a friend or loved one that I’m proud to be seen with them, there’s no arrogance there. The pride is, rather, a complete lack of shame, a rejection of shame. It’s an acceptance, a celebration.

Pride months and events usually celebrate something that society has historically taught people to attach shame to – race, sexuality, physical differences, things that we did not choose and cannot control, and which bring judgement and alienation.

Pride is a lack of shame.

That’s what makes pride months and pride events rebellious and revolutionary, and sometimes a cause for inner conflict. My community tells me not to feel ashamed of who I am, but the wider society is determined to tell me that there’s something very wrong with me.

People do try to make me feel shame for disabilities that I played no part in developing, that I had nothing to do with, that cause me pain and difficulty. Disability is being used in a sick game of political ping pong, and it means everyone has an opinion about how my needs affect their life, and their taxes. People who aren’t disabled desperately want to believe that they have the secret solution on how to avoid this terrible fate, so I have people framing my unavoidable illnesses as though it was all my fault after all.

In a world, and a country, that has an increasingly open conversation about disability, and ever-growing communities of support for those of us living with disability, I still feel like I’m expected to feel shame. I can try to rise up during Disability Pride Month, and overcome the shame society expects me to feel, while also being aware that next month, I’ll be visiting Parliament with a human rights group to try and make sure that disabled people are treated like people.

I also think some people don’t realise that disability pride needs to leave room – generous room – for disability grief, and that the two aren’t mutually exclusive.

I don’t think it would matter how may disability pride months I celebrate – I will always grieve the things I lost, the things I missed out on, the things I’ll never be. And that’s okay. Those two things can coexist. The pride and the grief. Disability is complicated.

This world tries to make me ashamed of my disability, and I grieve the life I lost to it. But at the same time, I am incredibly proud of who I have grown into. The strength, resilience, grace and patience I’ve developed as a person with disability are all things to be immensely proud of. I’ve had to develop a level of creativity and resourcefulness and a sense of humour that responds to my circumstances and creates change. I’m proud of that. I would like to think that I still would have become creative and patient and strong and resilient without the forceful push of disability, but this is the direction things took, and this is the way I responded to them, and I’m proud of who I’ve been able to become.

Pride is a lack of shame.

Even if you’re on your journey of becoming resilient and patient, and developing that wicked sense of humour that sometimes makes other people uncomfortable (it’s very common amongst those of us with disability, you’ll get there), you can still find pride in your disability. It’s not in your wheelchair, or in the way your spine doesn’t carry your body upright, or in the fact that your brain functions differently.

It’s in the way that you don’t give a shit. Somebody looks at you in your wheelchair and judges you – who cares? Somebody makes assumptions about what you can or can’t do because of a spinal cord injury – who cares? Somebody belittles you because of the way your brain operates – who cares? They don’t live this life – you do. They haven’t survived this life – you have. They can’t decide whether you attach pride or shame to your disability – you can.

Pride is a lack of shame. Pride is a rebellious, revolutionary act. And people with disabilities are some of the most revolutionary people I know. We have to be. In a society where we often have to fight for our right to be recognised as equal human beings, revolution and rebellion is sometimes the only answer.

I’m not proud that my body doesn’t work – that’s just a fact I live with. I’m proud of my fighting spirit. I’m proud of my loud voice. I’m proud of my desire, my need, to make change happen. And on the days when I feel none of that fire, I can be proud that I’m still trying, because sometimes that’s the hardest part.

Pride is a lack of shame. Happy Pride Month, my friends.