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Parapride and prejudice
Some LGBTQ+ people who were ‘out’ before sustaining their SCI can feel as if they face new layers of discrimination – leaving them at best excluded from the scene and at worst back in the closet, says Mark Henderson, SIA’s senior vice-chair.
SCI people all experience living disabled by an ableist society. Those of us with other minority identities also experience the intersection of our existing discrimination with disability discrimination. The challenges are not limited to the prejudices of majority society but extend to how we interact as disabled people with our existing minority communities.
For someone like me who was active in the LGBTQ+ community pre-injury, I emerged from hospital feeling cut off from it. Four months after I was discharged in 2019, I ventured out on the queer scene for the first time as a full-time wheelchair user to the launch of Parapride at the Royal Vauxhall Tavern in London.
It’s truly bizarre that in support groups where we exchange the most personal details about bowel and bladder function I didn’t feel secure enough to share this personal detail. For decades I was proud of living my truth; now I find myself hiding and fearful
For this article, I asked other SCI people for their experience of living as queer disabled people, and spoke to people campaigning on the intersection of homophobia and ableism, including Daniele Lul, co-founder of Parapride, who I met that night in May 2019 when I found a new queer disabled community.
A common theme from LGBTQ+ people who were out before sustaining their SCI was the interaction of the new layers of discrimination they now faced, leaving them at best excluded from the scene and at worst back in the closet.
One man described an active life in London’s LGBTQ+ community before his injury. After his injury, he initially carried on living in Soho in inaccessible accommodation supported by friends. He was able to continue socializing on the gay scene, saying,
‘On the few occasions that I was able to be intimate I was nervous but surprised at how people handled my disability, including my suprapubic catheter, which didn’t bother people but casually got moved from place to place to prevent damage.
However, when he lost his accommodation, he was unable to find anywhere accessible to move to in London and ended up having to move away to find new housing. In his new suburban area, there was little in the way of an organised LGBTQ+ community. Though he has found support from SCI groups where he lives, he feels “partially back in the closet” and now “vulnerable in so many ways”. He says:
‘It’s truly bizarre that in support groups where we exchange the most personal details about bowel and bladder function I didn’t feel secure enough to share this personal detail.
For decades I was proud of living my truth; now I find myself hiding and fearful. In the coming year I will have to straighten out this mess and see if I can reassert some sense of identity as it serves as a motivator for being alive.’
Social care, COVID and the LGBTQ community
Regard was formed in 1989 as a national LGBTQ+ Disabled People’s organisation. Dr Ju Gosling, its co-chair, told me:
‘Being forced to return to the family home after becoming disabled is a common experience, which has been exacerbated by the pandemic. Many LGBTQ+ disabled people are now being forced to choose between living as their authentic selves and risking catching Covid from social care workers or relying on their families and being either completely closeted or not connecting with the LGBTQ+ community.’
Ground-breaking research co-produced by Regard, Stonewall, the University of Bristol, and the Social Care Institute for Excellence (SCIE), “LGBTQI+ Disabled People and self-directed social care support” examined the experience of LGBTQ+ disabled people who receive direct payments or personal health budgets (or self-fund) to be able to employ their own PAs and support workers.
Dr Gosling explains that the research, ‘showed that even when an LGBTQ+ Disabled person is living independently with self-directed support, they are often forced to remain closeted.’ The report found:
‘More than half of those surveyed said that they never or only sometimes disclosed their sexual orientation or gender identity to their PAs who they paid to support them. Less than one third said that they were ‘very comfortable’ talking about their support needs pertaining to being LGBTQ+ with their PAs.
More than a third said that they had experienced discrimination or received poor treatment from their PAs because of their sexual orientation or gender identity.’
The SCIE hosts a range of resources for LGBTQ+ people and their PA’s and support workers.
Taking Parapride in yourself
Parapride’s co-founder Daniele says:
‘My political fire comes from partly from the impact of becoming disabled on my mental health and feeling barred by society from re-connecting with my social life. There is such difficulty in readapting to life after becoming disabled.
Once I felt well enough to want to reconnect with my social life and with the gay community as a disabled person, I was keenly aware of what had previously felt uncomfortable about mainstream gay spaces – for example the lack of accessibility, the lack of diversity, the focus on youth, looks and social status, and the poor representation of those with anything other than conventionally ‘perfect’ bodies.
This made me feel even more anxiety and stress about returning to the social world after becoming disabled. I did not want that feeling to dominate my life.
I wanted to find an alternative that addressed the lack of inclusion for disabled people within the LGBTQ+ community. Finding a community has, along with therapy, made my lived reality so much better.’
In July 2019, shortly after its launch, Parapride was invited by Stonewall (the UK’s leading LGBTQ+ campaigning charity) to march in solidarity at the front of the parade alongside groups representing other marginalised LGBTQ+ communities. Daniele recalls:
‘It was us, the Muslim LGBTQ+ group Imaan, Black Pride, Mermaids, Gendered Intelligence and another group of very young trans people accompanied by their parents and guardians. So it was great to be in this mix.’
However, even in the midst of this show of solidarity, Parapride still faced ableism. The Pride organisers failed to communicate to Parapride that the lift at the designated accessible station was out of order, causing serious stress as wheelchair users attempted to reach the designated starting point in time. Others got there on time but then had to wait in a stationary crowd with stewards who didn’t know where to find the accessible toilets. Daniele reflects:
‘It all went well in the end and we all have great memories of that day but there were a lot of difficulties happening in the background. And Pride in London as the largest LGBTQ+ event in the capital, needs to improve on accessibility because it wasn’t easy. It was a great day, but it wasn’t easy.’
Parapride has continued in its mission to improve both infrastructural and cultural accessibility for disabled LGBTQ+ people. The group has hosted more events, culminating just before the first Covid lockdown in an event at the Stratford Circus Arts Centre for LGBT History Month which highlighted LGBTQ+ and disabled artists from Drag Kings and Queens to Aerial Dancers.
During the pandemic, Parapride has hosted its Dis-Section events online, including on disabling stereotypes in the media and LGBTQ+ society, on stigma and barriers to disabled people participating in queer spaces, and on disability and sexuality. Daniele sums up its mission:
‘Parapride wants to amplify the voices of the disabled LGBTQ+ community. We want to ensure we continue addressing the lack of inclusion for disabled people, not only through our struggles but especially from our stories of empowerment.’
More information
Sex and the Spine – easily accessible and trusted resources on sexual well-being from professional experts.
Spokz – Online shop offering products aimed at enhancing sexual wellbeing for disabled people
Sexual Health and Disability Alliance (SHADA) are involved in the positive promotion of sex for disabled people. This link provides a list of numerous sex-related resources
If you would like to discuss any of the issues mentioned above with someone who has lived experience of SCI visit our support page to find the contact for your area. Alternatively you can ring our support line on 0800 980 0501 or request a call from one of our SCI specialist nurses.