I managed to capture my lovely late great friend Barbara Stewart (1956-2016) saying ‘…so I do the hand thing…’ on an audio recording during an interview I carried out for my PhD research. There were several people present at this focus group type interview, including Barbara. The purpose of the research was to explore representation and identity issues about disability, from people with direct lived experience of it. An abridged version of my PhD was published as a chapter in an academic text in 2009, titled ‘Disabilities: Insights From Across Fields and Around the World’. The transcript of the extract read as follows;
Babs: …I also find that a lot of people don’t realise I’m disabled and that gets on my nerves
when they, they might say a joke or say something nasty about someone and then I’m on
my soap box, and I do get on my soap box and then they (1.0) ‘°what° ↑ you’re disabled’↑
so I do the hand thing, I show them my hand, for the tape they’re quite bent ((laughs)) and
then they’re like ‘*o.h Go.d oh you’re disabled*’ ↑some people even move away from me
↑and I‘m like Errrrr [R: do they?] like pretend I’m gonna give them a disease and then
they go ↓‘°oh oh I didn’t know you was disabled°’ and people treat me different, […] and
people suddenly treat me different (1.0) you know people, neighbours what I’ve seen for
years they might have seen me limping one day and they go ‘↑oh is your leg better now,
you’re not limping today↑’ and I say ‘↑oh I’ve got.. Rheumatoid arthritis↓’ it’s like ‘oh God,
you poor thing’ but I say I don’t want no sympathy (.) you know I don’t, I’m quite strong
with it… a fighter.
Barbara and I spoke a great deal about disability and the power of coming out, being proud and as she would say ‘shaking what your mumma gave you’. We would often talk about the negativity wielded against disability and the damning impact this had on people, but most importantly also the power of people with lived experience of disability to challenge and rework alternative understandings. In this way, photo I took of Barbara’s beautiful hands holds so much power and importance for me.
At the private view of the photo ‘…so I do the hand thing…’ at the Shape Open Exhibition in December 2014, Barbara and I looked happily on her hands displayed on the wall and she told me of the many difficult conversations she had had, and had resisted with people about her hands. Barbara really taught me that the problem is not so much about ‘disability’, but ‘the very idea of normal’ in the way it works to suppress the inevitable reality of the body and mind as a changeable and diverse site of experience. In this way, and as uncomfortable in the moment as it may appear to some, Barbara’s utterance ‘…so I do the hand thing…’ reminds us of the importance of unconditional acceptance of how we and others are, at any given time. Barbara’s message being, be proud, be loud and if challenged find your specific way to ‘do the hand thing’.