Navigating Choice and Control
Putting disabled people in charge of their own support was a central component of the UK personalisation agenda. However, the reality has often fallen short of the rhetoric. Austerity, staff recruitment difficulties and local authority retrenchment have meant that the experience for many disabled people has not lived up to the promise of enhanced choice and control.
This is particularly challenging for disabled people with marginalised sexual and/or gender identities, who face difficult choices in everyday interactions of support. Rather than routinely sitting with them, control can feel precarious and fragile. Disabled LGBTQI+ and non-binary individuals are sometimes forced to make ‘bad bargains’ in order to access the support they need.
In this article, we draw on two research studies that explored the experiences of disabled people using self-directed support. Participants discussed the complexities of navigating gender and sexual identity within their care arrangements. While there were opportunities for empowering support, we also heard troubling accounts of discrimination, oppression and impossible dilemmas.
The hard-won goals of choice and control are being degraded, confronting many LGBTQI+ and non-binary disabled people with seemingly impossible challenges. As one participant poignantly reflected, “Life is too short not to celebrate the things in my life that are the most wonderful.” Yet the realities of negotiating personal support can make this aspiration feel maddeningly out of reach.
Personalisation and its Discontents
The drive for disabled people to have more control over their day-to-day support was shaped by opposition to established models where ‘care packages’ were purchased from local authorities, the independent sector or for-profit organisations. Disabled people would routinely have no say about who came to their homes to ‘do’ support, nor any input into whether that person was older, younger or of a similar outlook, ethnicity, gender or sexuality.
Activists and academics wrote about the radical changes needed to transform how support was imagined and delivered, locating this within the Independent Living Movement. The policy agenda of personalisation aimed to empower disabled people, shifting social care towards a “less bureaucratic and more ‘personalised’ form of service ‘which is on the side of the people needing services and their carers’.” (DH, 2007)
However, the promise of personalisation has been critiqued for its emphasis on individualism and marketisation, rather than the “bottom-up”, co-produced and re-envisaged ways of delivering support that were originally envisioned by the disabled people’s movement. As Pearson et al. (2020) highlight, there is an “ideological tension at the heart of personalisation, with the consumerist ideals of freedom conflicting with the collective impulses of social justice.”
In practice, the reality has often fallen short. The number of people using direct payments in the UK has declined in recent years, with only 26.7% of those drawing on adult social care now using this form of self-directed support (Kings Fund, 2023). Reasons include a lack of support to manage direct payments, decreased local services to ‘purchase’, uncompetitive pay rates, high staff turnover, and the impact of Brexit on the social care workforce.
Furthermore, in a climate of austerity, advocacy services for disabled people have faced sharp declines in funding. This has led to accusations of a loss of authentic and independent advocacy, with some feeling their ability to speak out has been hampered by the threat of funding cuts.
The “poverty of personalisation” has been laid bare, with disabled people using self-directed support often entitled only to a “minimal level of care and support to ‘live a basic existence’ rather than a ‘meaningful life beyond personal care’” (Adult Social Care Committee, 2022). The overall sense of crisis has prompted urgent questions about whether local authorities can truly be trusted to deliver on the promise of personalisation.
Intersecting Identities and Support Needs
Within this policy and real-world context, how do systems of self-directed support engage with the full range of other important intersecting identities and protected characteristics a disabled person may have: gender, ethnicity, sexuality, age and gender identity?
In terms of sexual and gender identity, social care staff may not have these issues on their “radar”, or may hold assumptions and biases about the acceptability of being disabled and gay, lesbian, bisexual, transgender, non-binary, and so on. They may consider support needs related to sexuality or gender identity to be “off-limits” or disagreeable, and their physical and spoken interactions could potentially oppress and discriminate.
Not every aspect of life that disabled people want and need support with is related to their sexual or gender identity. However, these identities are often mapped onto bodies, becoming a source of power or subjugation. Disabled people using personal budgets may have greater choice and control over aspects of daily life, including sex, intimacy and relationships, compared to local authority-provided care. Yet they can also feel under-skilled in managing personal assistants (PAs) – a challenge that may extend to negotiating support related to gender or sexual identity.
More broadly, the needs of disabled people from minoritised sexual and gender identities are largely unrecognised within social care provision. Research suggests instances of LGBTQI+ disabled people being refused the support they need to attend relevant social activities or to communicate and meet up with potential partners, based on perceptions of vulnerability or discriminatory attitudes.
Negotiating Choice and Control
Our research provides insights into the complex realities faced by disabled people with marginalised sexual and/or gender identities as they navigate self-directed support. We draw on two NIHR-funded studies that explored these experiences in depth.
Study 1: LGBTQI+ Disabled People and Self-Directed Support
This collaborative project, carried out by Abbott with REGARD, Stonewall and the Social Care Institute for Excellence, surveyed 56 LGBTQI+ disabled people using direct payments or personal budgets. We then conducted follow-up interviews and a focus group with support workers.
The survey findings were stark: more than half of respondents said they never or only sometimes disclosed their sexual orientation or gender identity to their PAs; over a third had experienced discrimination or poor treatment from PAs due to their identity; and over 90% felt their needs as an LGBTQI+ disabled person were either not considered at all or only given some consideration during assessments and reviews.
The free-text responses offered a rich tapestry of experiences, both positive and negative. Some participants described empowering support that allowed them to be open about their identity:
“My PA was delighted to come on Pride with me. My PAs, I’m very open with them about my orientation and about my gender. I need people to work with me that respect my independence and who are happy to see me participating in my community doing things that enrich me.”
However, many also shared difficult stories of discrimination, oppression and impossible choices:
“It was very, very difficult. She was coming in in the morning, telling me that I needed to strip naked and have a hot bath and pray to Jesus to take away my impairment. She was saying that I should put a boiling hot flannel against my genitals to shrink them back into a proper position so that they’d be more appealing to men. I’m trans. It felt abusive.”
Another participant described the challenges of managing their gender identity with their PA:
“Because I don’t feel able to come out to my PA (I still present male around her), I’m not able to go out as myself with her…. There is quite a lot I have to hide from her. Being able to explore my gender with the support of my PA is important both to my mental health and to my transition.”
The fear of losing staff or having to “put up with more bad behaviour” if they were too open about their sexuality or gender identity was a common theme. As one person reflected:
“I worry about losing otherwise good and valuable staff members if I am too open about my sexuality and gender.”
Study 2: Young Disabled Adults, Gender, Sexuality and Personal Assistants
This collaborative project, led by Coleman-Fountain, explored the experiences of 12 young disabled adults (including cis women, trans men, non-binary people and a trans woman) as they managed issues of sexual and gender identity with their PAs. Interviews were also conducted with 11 PAs.
Participants highlighted the importance of having PAs who were genuinely inclusive and affirming of their identities, rather than just “accepting” or “tolerant”:
“I am out to everyone because … life is too short not to celebrate the things in my life that are the most wonderful. I can’t separate my queerness from other aspects of my identity and experience … dating women is just part of who I am, and I refuse to hide it.”
However, many also described the delicate balancing act required, negotiating the line between employer and friend, and the lack of support in managing the administrative side of self-directed care:
“Managing that fine line between employer and friend, because it’s miserable to spend time with someone that isn’t your friend to a certain extent, but, at the same time, it causes a lot of problems when they’re too much a friend. So, yeah, advice on how to manage that.”
One participant poignantly shared the shame and difficulty they experienced as a trans and queer disabled person, reflecting on how much “easier it would be as a disabled person hiring PAs if I didn’t have this to contend with.”
Degraded Choice, Constrained Control
The stories and experiences shared by marginalised disabled people in these studies paint a troubling picture. The hard-won goals of choice and control that were central to the personalisation agenda are being eroded, confronting LGBTQI+ and non-binary disabled individuals with seemingly impossible dilemmas.
While there are examples of empowering support that allows disabled people to live authentically, we also heard about “bad bargains” – compromises and constraints that undermine self-determination and dignity. Discrimination, oppression and abuse from care staff remain all too common, forcing people to make heart-wrenching choices between their identity and their support needs.
As the policy rhetoric of personalisation clashes with the harsh realities on the ground, disabled people with marginalised sexual and/or gender identities are left negotiating a precarious tightrope. The ideals of independent living and self-directed support risk becoming a cruel mirage, as control routinely eludes them.
Addressing this requires a multi-faceted approach. Fundamentally, the social care system must be adequately resourced to provide the support disabled people need, without forcing them to compromise their identities. Recruitment, training and ongoing support for PAs must prioritise LGBTQI+ inclusivity and affirmation.
Moreover, the voices and experiences of marginalised disabled people must be centred in shaping policy and practice. Personal narratives have the power to challenge stereotypes and shift cultural norms – but this requires creating accessible platforms and actively amplifying these stories.
Only then can the promise of personalisation be truly realised, empowering disabled people of all identities to live the “gloriously ordinary” lives they deserve. As one participant powerfully articulated, “life is too short not to celebrate the things in my life that are the most wonderful.” This should be the starting point for a more just and inclusive social care system.
