This year’s Disability Awareness Month runs from 18 November until 18 December 2020.
The theme is around Access: How far have we come? How far do we have to go? If you generally have access to stuff (like the physical environment around you, transport options, information and communication, services, and so on) then this is probably something you’ve never thought about consciously. But if, like me, you only have access to a lot of these things because of being efficient at hiding your identity, the whole subject becomes a lot more complicated.
Let me explain. I have a condition called Beale’s syndrome, which is related to Marfan’s syndrome – a genetic disorder that affects the connective tissues that hold all of the body’s cells, organs and tissues together. Simply put, my body does not produce enough of the protein needed for connective tissues in my body. This is most prevalent in my finger joints, which resulted in me being born with my fingers curled in towards the palm and unable to stretch out.
It’s a very odd feeling to realise that the only reason I’ve not been more impacted by my condition is because I had access to the right surgery, courtesy of the NHS. This surgery involved my hand tissue and joints being reconstructed, and helped me to gain about 80% of the movement in my fingers. As a result, I’ve got really, really effective at ‘hiding’ my condition.
It helps that unless you’ve sat with me for a while and paid very close attention to how my fingers never quite leave a ‘claw’ shape, you would never really guess that I had a disability. But I still try to hide my condition as much as possible. I use pointers in my presentations to avoid using my hands, and my penchant for fingerless gloves means I can hide the surgery scars that decorate my fingers.
In the same way, many people wouldn’t really guess that I was queer, which I use as a label for myself. I don’t hit a lot of the stereotypes that exist around LGBTQIA+ people – and even if I did, that shouldn’t be a negative thing. Plus, because my partner is a straight, cis man, I often get mistaken for not being part of the community. Depending on the circumstances, I would say I’m more confident at being ‘out’ as queer, rather than ‘out’ as disabled, but that’s probably just because I work for a big LGBT rights charity and have that as a bit of security.
I often find that my access to spaces and opportunities depends a lot on how effectively I can hide these different aspects of my identity. For example, a lot of the spaces that my family occupies require me to hide my queer identity. In mainstream LGBTQIA+ spaces, disabled folks are often deliberately excluded, because it is seen as impossible for someone who is disabled to engage in romantic and/or sexual relationships. On top of that, ableism and queerphobia often go hand in hand. We see this everywhere: from the media we consume all our lives, to the medical-based and pathologised ways we have spoken about these identities until recently.
A lot of folk, especially disabled folks, may not have even their basic human rights respected.
Understanding that these two communities share struggles is vital if we are to make equal rights a reality for everyone. It’s also worth remembering that a lot of folk, especially disabled folks, may not have even their basic human rights respected. LGBTQIA+ organisations need to ensure that they support disabled service users and supporters, and organisations that work with disabled people need to be aware that some of the folks they support will also be LGBTQIA+. It’s tough to change our practices, but if we’re going to truly embody the values that make us proud, we need to make sure that we tackle all discrimination and stigma of identities.
Understanding that these two communities share struggles is vital if we are to make equal rights a reality for everyone.
As a first step on this journey, we must amplify the voices of those who have been historically underrepresented in our communities and who are, even now, marginalised by our structures and systems – whether economic, societal, or inter-personal. We must also work together to remove the systemic barriers that prevent folks getting what they need for a good life. Maybe then, people like me will be able to enter any space without hiding vital parts of their identity.