The absence of shame

I was going through some old work stuff recently and I found some posters that said, ‘Proud to be Disabled’. It got me thinking.

For a long time now, I would have said that I am proud to be disabled. Working in the disability sector too, I meet so many fantastic people and I do feel proud to be part of such an understanding and passionate community. But am I really proud to be disabled?

As I thought about it, I remembered my mother who is disabled, but would never say this about herself. For she is too ‘proud’ to. I thought about the different types of pride.

I feel pride when I teach my cat something new, or one of my team succeeds in something they were nervous to try. When my stepdaughter brings home from school a drawing of me. But do I feel pride when it comes to simply being disabled?

I realised that what I feel is not pride, but the absence of shame. For so long, I was ashamed of my health conditions. I watched my mother struggle with walking, opening things, doing her hair, unable to work – but she wasn’t disabled. She said she wasn’t disabled. So when I too became unwell and struggled with all of those same things, I didn’t feel I was ‘disabled enough’ to say I was disabled. I thought maybe I was weak. Lazy. Wrong about what I was feeling. All of those emotions carry shame.

I carried shame as I felt I wouldn’t be believed because I didn’t ‘look disabled’. I felt shame after leaving the GP surgery feeling I hadn’t presented ‘ill enough’ to be taken seriously.

When I started working at Equal Lives, I was 25. As I read the job description and the advert for the role I applied for, I knew immediately that these people would understand.

Early on in my career here, I felt that I was surrounded by people who just got it. I didn’t have to explain why I needed to be seated when others could stand. I didn’t have to justify that I couldn’t walk as far as them. I could just say it. The only reaction I ever got was support.

Combining learning about disability with therapy and being surrounded by other disabled people, I felt the shame disappear.

I met my partner whilst working here, another disabled person who talked so openly about being disabled. When I met his family, I could understand more about how his perceptions of disability had been shaped. He wasn’t ashamed. Why would he be? He hadn’t been taught to be.

I moved through several stages of acceptance before being able to say ‘I am a disabled woman’ without worrying about what people would think about that. I felt that I could say I was disabled without the fear that this label wasn’t for me, because there are others who are ‘more so’ than me.

Writing this, I realise now that I am proud to say I am disabled. I am proud of myself for unlearning the negative connotations associated with disability, and learning that this is part of who I am. It is so much a part of me that it’s no less than saying the colour of my eyes or my shoe size.

I am disabled, and I am proud of that.

Written by a Staff member at Equal Lives

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