Crippled

by Frances Ryan

  Historically, disabled people in Britain – and with it, disabled mothers – have been largely viewed as unfit to give birth or to raise children. The sort of stigma that often faces working-class women – that they ‘breed too much’, leach off society and are ineffective parents – has long been levelled in a different way at disabled women, who are routinely seen as defective females, asexuals and unnatural mothers.

  Throughout the early twentieth century, such long-standing ableist attitudes combined with the rise of the eugenics movement across Europe and the United States to go as far as to attempt to prevent disabled people from procreating. In 1907, the Eugenics Education Society was founded in Britain to campaign for sterilization and marriage restrictions for the ‘weak’ in a bid to prevent what they saw as the degeneration of Britain’s population. It was an open attempt to wipe out future disabled people from the country, with supporters claiming disabilities such as dwarfism, deafness and even minor defects like a cleft palate could be permanently removed from the gene pool, and, moreover, that this would be entirely preferable.

  This was not a fringe belief, but rather went to the heart of the British establishment. While giving evidence before the 1908 Royal Commission on the Care and Control of the Feeble-Minded, Sir James Crichton-Brown recommended the compulsory sterilization of people with learning disabilities and mental health problems – an act supported by Winston Churchill.40 In 1931, Labour MP Archibald Church proposed a bill in Parliament for the compulsory sterilization of certain categories of ‘mental patient’.41 Such legislation never passed in Britain, but it is believed that many forced sterilizations were carried out on disabled people under various forms of coercion.

  Almost ninety years later, there has clearly been considerable progress, with British disabled women of my generation largely able to embark on motherhood if we choose. This is no small progress considering that developed nations such as Japan only recently ended their sterilization of some disabled women in the mid-1990s,42 while Australia still continues the practice, which falls under the United Nations definition of torture.43 However, while the extremism of eugenics is no longer present, British culture still holds deeply regressive attitudes around disabled people and sexuality and, in turn, disabled women’s ability to have sexual relationships or raise children. It’s not uncommon for visibly disabled mothers to be questioned in the street by complete strangers if they’re out with their children, be it asking if their son or daughter is ‘really’ theirs or how she had them.

  These attitudes can seem low-level prejudice, but it would be naïve to think they did not come with consequences – particularly in times of austerity. The assumption can exist, even among professional bodies, that mothers who have disabilities are inherently less equipped to raise children than non-disabled parents, while at the same time – in an era of vast cuts to social care, housing and benefit budgets – the disabled women who are in need of practical support to suitably care for their children are increasingly denied it.

  Carla called social services herself because she worried she was a bad mother. The twenty-seven-year-old has autism and multiple mental health problems – borderline personality disorder, depression and anxiety – as well as scoliosis of the spine and an immune system disorder. Her six-year-old daughter, Harmony, is disabled too; she has ADHD, epilepsy and a learning disability that leaves her with the reading age of a toddler.

  It’s just her and Harmony at home: at first, a privately rented small attic flat in London. To get to it, the stairs were so steep that both Carla and her daughter repeatedly fell down them. It was so cramped there were no cupboards to keep their things. When Carla was in the middle of a mental health flare, the flat was the first place to show the signs of things going awry: clutter everywhere, toys on tables, and clothes piled in corners. Depression meant Carla had no energy to clear it up. ‘I got to the point I was looking around the flat and thinking, “my mental health must be really bad”,’ she says. ‘I felt like I was a really bad mother. I didn’t want Harmony to have to live in this mess.’

  On top of the housework, Carla was struggling with day-to-day tasks for Harmony: making phone calls, getting to appointments and taking her to school on time. Going to new places is impossible for her without support because of her mental health and autism, she explains. ‘I just can’t do it.’

  In 2016, Carla contacted her local council to ask for support – a few hours’ social care for cleaning, she hoped, or some help with Harmony’s school appointments. She cried on the phone but was informed social care wasn’t available to support her. ‘It was, “no, we only help people who can’t get out of bed or who have an IQ below 70,” ’ she says. Over the course of a year, she repeatedly rang both adult social services and child social services for help but was refused an assessment. ‘I was at rock bottom. I was falling and falling but if they’d helped me earlier [it wouldn’t have got that bad],’ Carla says. ‘I know there’s cuts but … what if you can’t stand up for yourself? What if they make you cry and you just don’t go back?’

  This is common; cash-strapped local authorities are often failing to provide a social care assessment for disabled mothers even when need is obvious. Research funded by Disability Research on Independent Living and Learning (Drill) in 2018 painted a disturbing picture. It found that adult social services too often ignore the needs of disabled people who become parents, frequently prioritizing ‘monitoring’ over the sort of meaningful, practical support that might keep families together.44 The research, by the Tilda Goldberg Centre for Social Work and Social Care at the University of Bedfordshire, found that children’s social services too often see the parent’s disability as a potential risk to their children.

  In the end, the council finally sent Carla an assessment pack: a large pile of complex paperwork she didn’t understand. ‘I said to them, “I have a disability. I need help with these forms,” but they wouldn’t give me any.’ It was only when she went to Jemima’s support centre and they helped her with the application that she got some state support: a social worker for herself from adult services and a child social worker for Harmony.

  It was help from them that meant Carla was moved onto band A on the social housing list and moved into a ground-floor housing association flat. ‘That was a big help,’ she says. But there was little support after that. She was promised respite care for Harmony two days a week and some short breaks in the holidays – just a breather for when Carla needs a rest – but that did not materialize. Carla applied for ‘minimum hours’ for cleaning support – two hours a week – for when her mental health was at its worst, but was refused, she says. The state of the house ‘was one of their main concerns. But they wouldn’t do anything to help.’

  Carla has only seen her social worker once. In place of a social care package, the worker had been ringing round local charities to see if a voluntary support worker could help Carla get out of the house. ‘It just never happened,’ she says.

  As cuts to social care, housing and disability benefits have kicked in, there are reports that more disabled women have had to fight authorities for custody of their children, particularly after they had repeatedly been turned down for support. It can be a case of ‘disabled women are not supported with their needs and then blamed for not parenting “properly”,’ explains Jemima. ‘There’s a real fear that social services will take the children instead of helping.’

  Ellen Clifford, a manager at Inclusion London, a disabled-people-led disability service, tells me this has been exacerbated by benefit cuts and a social care system that’s ‘being cut to the bone’. ‘I’ve attended case conferences with disabled women who have serious physical and mental health impairments and due to the fact that her needs are not being met [by her local authority] her children are being put on the “at risk” register,’ she says. ‘Because [of severe cuts], disabled women won’t get support to fulfil their roles as mothers and carry out the domestic and childcare tasks they need support to do.’
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  Jemima tells me of a young woman called Jessica (not her real name) who had two children and was living with her wider family. Jessica, who had memory problems and trouble retaining information, was sent to a parenting unit by social services and accused of neglect: from not brushing the children’s hair to having the bathwater too hot. Jessica clearly might have benefited from support, including help with finding more suitable housing and a care plan, such as visual reminders to help her get in a routine with the children. But she was given nothing. ‘Catch-22,’ Jemima says. ‘She was deemed incapable of parenting, but not “disabled enough” to have support.’

  In the end, Jessica’s children were forcibly adopted. Jemima’s agency did all they could to support Jessica but she became severely depressed and struggled to understand court proceedings. No post-adoption support was provided by the state, Jemima says, including help to write the two annual letters Jessica was allowed to send her children. ‘So she doesn’t.’

  ‘It] is a power imbalance. Really, once you’ve been told you’re not fit to have them, and there is no way for you to prove the council wrong, the whole system is stacked against you,’ she says. ‘Even saying you want to keep your children can be used to prove you don’t recognize what is “best for them”.’

  The memory of that case is traumatic, Jemima admits, but what disturbed her as much was the realization that the charity alone cannot stop it being repeated again and again. ‘We watched it happen,’ she says. ‘It felt like it could happen to anyone.’ Any one of us with a disability.

  Sarah’s daughter was seven when she began caring for her mother. Sarah was pregnant with her third child at the time and started to struggle to walk. Seven-year-old Georgia would sit with her mum to comfort her as she rested, something that increased as Sarah’s health worsened. The doctors called it symphysis pubis dysfunction, but really it means pain: her pelvis is ‘stretched’, and by 2016 it had got so bad that she needed surgery to fuse her pelvis back together with metal forced through the bone.

  An occupational therapist from the hospital visited the family in North Yorkshire before Sarah’s operation and provided aids for the bungalow: a commode, a shower stool and a ‘grabber’ to help Sarah reach the cupboards from her wheelchair. That was the extent of the help from the state. There was no agency care worker offered by the council or even mention of a social care assessment.

  Instead, it was Georgia who picked up the slack: bringing tablets to Sarah, preparing food, and then taking it to her mum in bed. Sarah, now thirty-six, developed repeated bone infections after the surgery, and just as Georgia started secondary school, her daughter’s caring role only increased. ‘It’s generally from morning till bedtime,’ Sarah says of the situation now.

  Money problems have had a domino effect to increase Georgia’s caring hours. Early on in her illness, Sarah had to give up a wage as a human resources worker. As debts started to mount, she and her husband, Mick, went to their local Citizens Advice to see what help they could apply for. They were told they were only eligible for one disability benefit, Personal Independence Payment – anything else, like tax credits, were cut off as Mick’s earnings as a printer took them over the low-income threshold. Sarah did not even qualify for out-of-work sickness benefits, despite the fact she was too ill to work. Again, Mick was said to earn too much and her maternity pay also ruled her out. ‘I was so cross. We thought, “People get ill all the time. What do you do?” ’ she says. ‘They just leave you. The children don’t even qualify for free school meals.’

  To try and get by, Mick started to take on more hours. He already worked full-time but took on nights and weekends for the overtime. It means he often is not there to help Sarah with the kids in the morning, so if she is not well enough to drive, her own mum takes the three of them into school. Otherwise, Georgia takes on the brunt of it: waking her brothers for school and making everyone’s breakfast. ‘Sometimes my mum can’t move to simply get up in the morning,’ Georgia says. ‘I quietly wake my brothers so she can stay in bed and can rest.’

  Most days, Georgia spends two to three hours caring for her mum fitted around the school day. In the holidays, that goes up to four hours. Often, Sarah is too unwell to get round the kitchen so Georgia is the one who makes dinner for the family. Jacket potatoes. Noodles. She’s big enough to use the grill for cheese on toast now, Sarah explains. ‘Like playtime to her. “What shall we make for dinner today?” ’

  Sarah’s health fluctuates, which means Georgia’s caring responsibilities do too. Sarah often struggles to sleep – multiple cushions prop up her painful pelvis – and on the nights she can’t, she needs Georgia more the next day. When Sarah is at her worst her daughter has to help her wash in the shower. ‘She even empties my commode for me.’

  The term for someone like Georgia is a ‘child or young carer’, but I would call it a political euphemism for the safety net gone wrong. The last census in 2011 found there were 178,000 young carers (five to seventeen years old) in England and Wales.45 That’s eight-year-olds stretching to reach the high supermarket shelves for the weekly shop and thirteen-year-olds learning to make beans on toast for tea. This number is largely agreed to be a significant underestimate, with charities consistently placing the figure at more like 700,000.46

  Many families with a disabled parent don’t want to be ‘on the record’ that their children are undertaking caring roles, in part because of the stigma. There is also a fear the authorities may perceive them as not coping, while some children find it difficult to ask for help because they themselves fear being taken into care. Research carried out by BBC News and University of Nottingham in 2018 was extrapolated across England to correspond to more than 800,000 secondary-school-age children carrying out some level of care.47 This constitutes a hidden underage workforce doing the jobs many adults would find a struggle. Of those, the survey suggested that more than 250,000 young carers are carrying out a ‘high level of care’, with 73,000 taking on the highest amount of care.48

  The phenomenon of children caring for their disabled parent isn’t a new one but it has been rapidly increasing in recent years. This includes the very youngest infants; census data published in 2013 showed that the number of five- to seven-year-olds carrying out caring responsibilities in England had reached almost 10,000 – an increase of around 80 per cent over the preceding decade.49 As austerity spread and the squeezed social care system underwent cuts of billions of pounds, the number of recognized young carers in the UK rose by more than a third between 2013 and 2017.50 Analysis by the Independent shows an additional 10,000 children and young people qualified to receive the carer’s allowance in that four-year period.51 Again, this is likely to be only a small snapshot of what’s happening behind closed doors as only people over the age of sixteen are eligible for Carer’s Allowance. Georgia, for example, doesn’t count.

  Sarah noticed how Georgia naturally stepped in to help her at home when she first fell ill, despite only being at primary school. ‘She’s older than her years,’ Sarah says. Still, the emotional toll is tough and Georgia sometimes feels lonely, anxious and isolated because of her caring duties, especially during the long holidays. She often does not want to go out with her friends, as she gets nervous her mum might need her at home, Sarah explains. Georgia’s teachers know about the situation at home and she has learnt to be organized to be top of the class. When we talk during the summer, she’d already completed her homework on the first weekend of the holiday. She knew she’d be busy caring for the next six weeks.

  In some ways, Georgia is bucking the trend. Research by the Children’s Society in 2013 into the long-term impact of caring on a child’s life found that one in five miss school because of caring responsibilities, and many do poorly in exams as a result.52 Meanwhile the charity Barnardo’s says child carers are less likely to go into higher education because of their caring roles, and are thereafter less likely to be able to get a steady and secure job.53 If that wasn’t enough, they are also much mo
re likely to have mental health issues.

  Sarah and Georgia are very close. Georgia will come and sit on Sarah’s bed and cuddle, even now she is a teenager. This is clearly a loving, close-knit family – ‘I couldn’t ask for better kids,’ Sarah says – but it is hard not to think that they are being let down by the authorities. Children like Georgia are, to all intents and purposes, being forced to pick up the caring roles the state has abandoned, and yet rather than outrage, this situation is greeted with a combination of resignation and applause.

  Watch an annual Children in Need special or listen to most politicians and there is a concerted effort to promote the normalization of child carers – the social acceptance of a state of affairs that relies on a ten-year-old to make their sick mum’s tea. As adult social care minister Caroline Dinenage put it in 2018, ‘Young carers are this country’s unsung heroes, tirelessly providing support for the people they love.’54

  It is emblematic of the ease with which support for disabled people has been removed that we are even willing to use their children to plug the gap. The Care Act 2014, pegged as a major legal reform, in theory finally placed a duty on local authorities to consider the needs of children and young people living in households where there’s an adult who has a disability or impairment. Young carers have a right to a ‘needs assessment’, which is supposed to determine whether the care they provide impacts on their health, well-being or education. But such warm words mean little when uttered at the same time as local councils are starved of the funds needed to implement them.

  In reality, many young carers are not known to the authorities, or are left to carry on with their caring duties as they wait indefinitely even for an assessment. Research by the children’s commissioner for England in 2016 found four out of five young carers who look after sick, disabled or addicted family members receive no support from local authorities.55 The commissioner’s survey of English local authorities found there were 160 carers aged under five, some of whom had been formally assessed and supported as carers.56 This means that councils are fully aware that children as young as infants in reception class are acting as ‘carers’ in substitution for their parents’ care assistants, but not necessarily that they are offering support. As one cash-squeezed council told the commissioner, ‘We are essentially carrying out assessments as a tick-box exercise.’57