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Disabled women are being excluded from essential services

Disabled women are being excluded from essential services

It’s time to make their inclusion a priority, Lucy Webster writes

When women need domestic violence services, sexual health screening, or maternity services, they need them now. For disabled women, access to these services is often limited. For some, it’s nonexistent.

In many cases, there is literally no access. A 2018 BBC investigation found that only one in ten domestic violence refuges are accessible for physically disabled people – but problems abound even at those. Dr Hannah Morgan, associate professor of social policy and disability studies at the University of Leeds, points to a lack of accessible and affordable transportation to refuges, which are often situated in quieter neighbourhoods away from transport hubs. This can prevent disabled women from even getting to a refuge, or place them in the potentially dangerous situation of relying on others for transportation. And it’s not just refuges; other services for women experiencing abuse, from the police to healthcare providers, are also inaccessible, leaving women with nowhere to go for help.

Then there is the fact that refuges are not set up for the provision of care. Many disabled people receive their vital support from the very family or partners they are fleeing. Indeed, it is this reliance that means disabled women experiencing abuse experience it for far longer than their nondisabled counterparts. Data from the domestic violence charity Refuge shows that for disabled women abuse lasted an average of nine years, compared to 6.8 years for all women. Even when care is provided by social services, it is often tied to a local authority area, meaning that women who go to a refuge lose their care packages. Yet refuges do not have the space, capacity or funding to provide even the most basic personal care, often leaving women trapped in abusive homes.

Physical access is not the only problem. For women with sensory or intellectual disabilities, even accessing information about where to go can be impossible, says Dr Morgan. “If you can’t make a telephone call directly by yourself and someone has been doing that for you for years. concerns around things like confidentiality can sometimes be a barrier,” she says, explaining that often systems and protocols do not allow for the flexibility disabled service users need. “It’s not barriers that have been put in on purpose,” Dr Morgan explains, “but they do prevent people from accessing support.”

The same is true in sexual health provision. Just one facet of this problem can be seen in the struggles disabled women face in accessing cervical screening. A 2019 survey of disabled women by the charity Jo’s Cervical Cancer Trust found that 63 per cent said that they had “previously been unable to attend cervical screening due to a lack of appropriate access”, while 49 per cent of respondents said that they had “chosen not to attend cervical screening in the past due to a previous bad experience related to their disability or worries about how people might react.”

Hannah Wright, policy and public affairs officer at Jo’s Trust, lists the multitude of problems people have reported to the Trust: lack of basic wheelchair access to GP surgeries, an absence of height-adjustable beds to transfer onto, and a failure to provide stirrups all prevent disabled women accessing cervical screening. Transport is again an issue, with a lack of accessible parking at GP surgeries being a particular problem. 

Another is the difficulty – indeed, often the impossibility – of securing at-home cervical screening visits for disabled women who are house- or bed-bound. “There isn’t really consistent practice or guidance around home visits or screening particularly because of the pressures on primary care. It takes time to do and it does involve multiple staff members to do it because you kind of need someone on standby in case there’s an emergency or anything. And so a lot of practices aren’t doing – or feel like they aren’t able to do – visits,” Wright explains.

But again, the biggest barrier is a lack of information. GP practices that can’t accommodate disabled women’s needs are supposed to refer those women elsewhere – to other GPs or to hospitals where the right equipment is more likely to be available. Yet most patients are unaware that this duty exists, and the 2019 Jo’s Trust survey found that only 17 per cent of respondents had been referred to a more suitable location. Wright also pointed out that IT systems for booking cervical screening appointments compound the problem by not allowing patients to specify their access needs or communication preferences – meaning, for example, deaf women miss appointments they were only informed of via voicemail.

A familiar list of access and communication issues faces disabled women who need maternity services. A comprehensive study by the BMJ found that while women with mobility impairments were as likely as their nondisabled counterparts to see a healthcare professional in early pregnancy, those with sensory impairments were significantly less likely to do so, while a small 2016 survey by the pregnancy charity Birthrights found that only 19 per cent of the disabled women surveyed felt the necessary reasonable adjustments had been made for them.

“Logistical problems actually stem from deeper and more pernicious attitudinal ones.

One of those is the belief that accommodating disabled women’s needs is too costly or time-consuming.”

Across all these services, however, accessibility and logistics are not the only problems. Indeed, the experts agree that the logistical problems actually stem from deeper and more pernicious attitudinal ones. One of those is the belief that accommodating disabled women’s needs is too costly or time-consuming – that the necessary commitment of effort and resources is not worth the benefits to what is assumed to be a small number of people. Indeed, Jo’s Trust said that “some disabled women have reported being told that providing them with a cervical screening is too complex, and they have been encouraged to opt out of the screening programme.” Dr Morgan concurs, saying work to improve access is often the first thing to be shelved when funding or staffing is low.

But there’s also the problem of where disabled women are thought to belong and what type of lives they are assumed to live. In refuges, sexual health settings and maternity wards, there is an assumption that disabled women simply will not need those services, because they do not form intimate relationships or become parents. In conversations with practitioners, Dr Morgan often uncovers a perception that “disabled people are asexual, or can’t be gay or have other identities,” which affects the kind of support they are offered. This is borne out in the data: the 2019 Jo’s Trust survey showed that 20 per cent of survey respondents said it had been assumed they are not sexually active because of their disability, and healthcare professionals assume that they do not need a cervical screening. Why provide services for people you do not expect to exist?

Attitudinal problems are particularly acute in maternity settings, where the BMJ survey found that “significantly fewer women with physical, mental health and learning disabilities were likely to report definitely having confidence and trust in staff, fewer women in all disability groups reported always being spoken to so they could understand, and fewer women with physical, sensory and mental health disabilities reported that they were always treated with respect at this time. Significantly fewer women with physical disabilities (65 per cent) and mental health conditions (65 per cent) reported that they were always involved in decisions about their care compared with 76 per cent of those with no disability. Similarly, while 83 per cent of non-disabled women felt that their concerns during labour and birth were taken seriously, significantly fewer women with mental health problems or learning disability perceived this to be the case (74 per cent and 72 per cent, respectively).” Many also reported having their capacity to be good parents questioned by staff involved in their care.

But these assumptions are wrong and can have devastating consequences. Disabled women do belong and need access to these services – in some cases, they are in fact more likely to require these services than their nondisabled peers. For example, data from the UK’s Office for National Statistics and from the UN shows that disabled women are more than twice as likely to experience domestic abuse – partly, as Dr Morgan explains, because having nowhere to go makes them more vulnerable. Other surveys from around the world show higher than average rates of cervical cancer among disabled women, precisely because, Wright says, the early warning signs are not picked up by screening. And evidence suggests that disabled mothers in the UK are more likely to give birth prematurely or have babies with a low birth weight, requiring more maternity and postnatal care.

Contrary to the belief of service designers and policy-makers, meeting disabled women’s needs should be a matter of priority, not a nice afterthought. Access should be baked in, but this won’t happen until people believe that access is genuinely needed. The first step, then, in combating the systematic exclusion of disabled women from the vital services we need, is to convince decision-makers that we lead full and complex lives.

Lucy Webster is a writer and disability advocate. Her debut book, The View From Down Here: Life as a Young Disabled Woman, is available now.

Disabled women experiencing domestic violence can contact the Refuge National Domestic Violence Helpline, which provides a service on the phone or via BSL-interpreted video call. Jo’s Trust recommends that those with worries about access to cervical screening should speak to their GP.