As a downloadable resource put together as a template for reflection on how to approach naming your access requirements for organisations you may work with as a freelance disabled artist, Alexandrina Hemsley offers an access rider with guiding comments from their lived experience as a person of colour with invisible disabilities.
“Disability justice was created by intersectional disabled queer folks who were really sick of the single-issue, white narrative and politics of the disability rights movement. Patty Berne says that “disability justice centers the lives and leadership of people of color, of queer and gender nonconforming people with disability. It is a movement-building framework, not an academic theory.” When people invisibilize the leadership of people of color, of queer and gender nonconforming people with disabilities, it’s not disability justice.”
LEAH LAKSHMI PIEPZNA-SAMARASINAH
I have been navigating contracts, institutions and employment conditions since 2009. I began using an access pack in 2017/8. I receive Access To Work but negotiate access costs not covered by Access To Work with organisations and partners. This is not always a smooth process as doing so frequently precipitates two, intertwined negotiations.
Firstly, these conversations uncover where/how the institution has either purposefully excluded disabled artists or carries unexamined, ableist biases within their frameworks; both financial and interpersonal. Secondly, because of power differences between the salaried institutions workforce and artist/producer freelancers, it is exposing for freelance creative practitioners to advocate for the working conditions they need to do their work. Add in the emotional labour of explaining not only a marginalised reality but repeating justifications of support, and the undertaking is daunting and frequently exacerbates health vulnerabilities.
I also offer this open pack to acknowledge that not everyone with access needs is in receipt of Access To Work and not everyone with access needs necessarily identifies as disabled. There are alternative ways people with long term health conditions may choose to identify, e.g. neurodivergent or neurodiverse. It is worth noting that a lot of organisations mainly add ‘Do you have a disability?’ on their monitoring forms and this can cause alienation, doubt and feelings of being left out of conversations, a lack of recognition and at times, makes it harder to access resources meant to support people with access needs.
“Neurodiversity is an essential form of human diversity. The idea that there is one “normal” or “healthy” type of brain or mind or one “right” style of neurocognitive functioning, is no more valid than the idea that there is one “normal” or “right” gender, race or culture.
The classification of neurodivergence (e.g. autism, ADHD, dyslexia, bipolarity) as medical/psychiatric pathology has no valid scientific basis , and instead reflects cultural prejudice and oppresses those labelled as such.
The social dynamics around neurodiversity are similar to the dynamics that manifest around other forms of human diversity. These dynamics include unequal distribution of social power; conversely, when embraced, diversity can act as a source of creative potential.”
THE NEURODIVERSITY PARADIGM, BY NICK WALKER
My hope is that a document such as this could provide a framework to begin articulating needs and encourage the sensitivity and institutional, financial support vital for working environments and relationships in our sector to be caring and inclusive. I do this to lighten the load of advocating for the practices which will best help you do the work you wish to do, and to give an indicator that being held to account by supporting and respecting boundaries of access needs in relation to work environments are the responsibility of institutions, in shared dialogue with the artists they employ or wish to employ.
This access rider aligns itself with an intersectional and social model of disability. The model is informed by naming that:
“…people are disabled by barriers in society, not by their impairment or difference. Barriers can be physical, like buildings not having accessible toilets. Or they can be caused by people’s attitudes to difference, like assuming disabled people can’t do certain things. The social model helps us recognise barriers that make life harder for disabled people. Removing these barriers creates equality and offers disabled people more independence, choice and control.”
- Have someone else you trust to talk through and write this with you. This could be a professional or a friend/family member.
- Take some time (and breaths) to think through a day where most things have gone or felt wrong in terms of access while at work – e.g. pain levels, negligence, conversations that were challenging or felt excluding. Think carefully through what was debilitating and what communications and practical procedures would have helped if they had been put in place and available. This can be a challenge – hence having a companion to write this with you or for you.
- If helpful, anchor in your lived experience and value. It is your right to have accessible work in a safer space.
It is crucial to address the origins of ableism within structural racism and white supremacy. The racial hierarchies intrinsic to the historical constructing/pathologising race, and legalising institutional racism, deemed Black people to have less intelligence, to be less capable of fully and equally participating in (white) society. Indigenous cultures were decimated in the name of ‘civilisation’ in still untold massacres. The present-day undervaluing of and threat to BIPOC life cannot be kept separate or parallel to understandings of disability. Racism and ableism are rooted and entwined together.
The whiteness of the disability arts sector (which has not yet fully examined or enacted structural change to address discrimination), and racism within other social contexts, e.g. within accessing appropriate medical care, are significant barriers for BIPOC with access needs. The compounding effects of having these multiple, marginalised identities cannot be understated. Additionally, white-led arts organisations need to take extra consideration of the privilege and biases they are enacting, when interpreting a BIPOC’s access needs and deciding for themselves how to support that person’s needs.
Writer, educator and community organiser for disability justice and transformative justice Mia Mingus coined the term ‘Access Intimacy’ which I leave here as an encouraging hope for solidarity:
“Access intimacy is that elusive, hard to describe feeling when someone else “gets” your access needs. The kind of eerie comfort that your disabled self feels with someone on a purely access level. Sometimes it can happen with complete strangers, disabled or not, or sometimes it can be built over years. It could also be the way your body relaxes and opens up with someone when all your access needs are being met. It is not dependent on someone having a political understanding of disability, ableism or access. Some of the people I have experienced the deepest access intimacy with (especially able bodied people) have had no education or exposure to a political understanding of disability.
Access Intimacy, Interdependence and Disability Justice, April 2017
You are welcome to download the Access Rider Open Template for free. Click on this link to download the Access-Rider-for-Creative-Freelance-Practitioners-Open-Template
This access rider open template has been created in partnership with Dance4 and with support from Disability Arts Online, Battersea Arts Centre, Siobhan Davies Dance, Independent Dance, The Place and Sadler’s Wells.
With thanks to Rachael Young, Rebekah Ubuntu, Vijay Patel and Nina Mühlemann, who each provided invaluable feedback on the access rider.
Access To Work is an HMRC government grant available in England, Scotland and Wales to support disabled people at work. Disability Arts Online have created a guide to the Access to Work rules and official guidance, with specific advice for the arts and cultural sector.