I have recently been thinking about my identity, about who I am, and what I can do. About the labels I use to describe myself- and my concern about what labels other people might use to describe me. I am trying to reconnect with a self-acceptance and self-respect that has wavered over the past few years.
It was easier before I was sick. I was working and my identity was closely tied to my role. I believed in what I did, and I was proud of it. I also danced, went hiking, ate out, was connected to friends and community. But since becoming unwell it has become harder, less clear, and I’ve struggled to feel the sense of pride that used to come easily to me. So much of my life has changed over the past few years, much of what I used to do and so by default who I used to be, is no longer accessible to me. I have changed (am changing) and it is time for me to look at how I can re-accept myself within this new and different life that I have.
When I started working as a disability support worker some 20 years ago I quickly counted myself as an ally and advocate to those I supported. I was taught, and believed that labels are harmful- and yes they can be. I was taught to use, and became very proficient in person- first language. Looking back I now realise that I took some weird sense of pride in how easily the term, person with a disability, or family of a person with a disability, would roll off my tongue- top marks for me.
And until recently I never questioned the wisdom of person first language, neither did I question my reluctance to use the term disability, or disabled in general. I understand my stance, and that of many others to be a reaction to the harm perpetuated against disabled peoples across all of history. This was/is a reaction to institutionalisation, segregation, stigmatization, denial of human rights, medical exploitation and murder that was and continues to be committed against disabled people. Pretty much the worst that can be done has been done to people with disabilities. The focus of my work was always person centered and individualised. It was my job to support and develop opportunities for inclusion and ‘mainstream’ living. The people and the families I worked with were pushing the boundaries together, pushing to be socially valued and to be afforded the respect and dignity that comes automatically to most of us.
I worry though, that this reaction and response stems from, and to some degree continues, to support the dominant paradigm, that only normal is truly valuable- so please do everything you can be to be that normal. I wonder if Disability pride has been set aside for fear of devaluation. In all my years of working with disabled people I never encouraged anyone to be proud of their identity as a disabled person. I am ashamed to say that it didn’t even occur to me.
In all of the planning sessions I have done over the years I don’t think anyone has written on that sheet of butcher’s paper ‘disabled person’. Everything else has been there, everything we thought of as good, as positive, is there- daughter, sister, friend, worker, volunteer, consumer, music lover, football fan, artist, singer, cook, gym member, but something was missing. To me this speaks of the continuing bias we have against disability, it speaks of shame, not of acceptance.
Disability still remains something to be distanced from, something dangerous. It reminds me of when I came out as gay to my mum. Her concern was that I would face prejudice and discrimination. I think this has been a key part of why the disability sector has worked so hard to minimise the focus on disability- to the point where it is hardly mentioned at all. Yet for me what helped when I first come out was that there was a supportive culture within the LGBTIQ community. There were events celebrating our diverse, but shared identities, I had allies and friends, and I didn’t feel alone.
Society does not encourage camaraderie like that amongst people with disabilities. In fact many individualised approaches to support and planning actively discourage disabled people spending time with each other. By pushing so hard for individualisation I feel like the message to disabled people is one of acceptance but with conditions and inclusion but with limitations. You can be here but don’t be too different.
Given the terrible past, and present treatment of disabled people this approach is, to some degree, understandable, but I want to say loudly, and proudly that we can not stop here. We have to go further. Disability is a real, lived experience. And disabled people can be proud of our differences, and the experiences they afford us.
I am only now taking the early tentative steps of proclaiming myself as a Disabled queer woman and chronic illness activist. I feel a little like I am coming out all over again. I am not sure yet what this role entails, but I am hopeful and I am sure I will find allies and friends along the way. I look forward to meeting others, people who have been on this journey longer than me, and I look forward to hearing and learning what I can. I know that as the end of the day I might not find all the answers I am looking for but I am sure to have more pride.
I want to thank Carly Findlay, particularly a for a blog post she wrote in July 2016, This is What My Disability Looks Like, which I read a few months ago. This got me thinking about how I have been framing my experience and identity and helped me to confront my internalised ableism. I also want to thank Jax Jacki Brown whose article in the Daily Life Say The Word, why I’m reclaiming the word disabled from January 2016, has also helped me name what I was trying to put words to.