Our severely learning-disabled sixteen year-old daughter, Helen (not her real name), is entirely dependent on others for intimate care. Nearly two years ago, her special school sent round a new intimate care policy, which had been ratified by its governing body:
“A decision has been made to remove cross-gender consent from the personal and intimate care policy, which is in line with legislation and guidance relating to equality and diversity”.
In other words, same-sex intimate care had now become cross-gender intimate care, a change of policy that would allow male members of staff to take Helen to the loo, one-to-one, behind a closed door. As her parents, our reaction was initially disbelief, followed by outrage, and a determination that this policy change should be reversed. Life as parents of a severely learning-disabled, autistic and non-verbal daughter certainly has its worries, and some of these are the focus of this blog. But there is a danger, in writing at length about our worries and fears for Helen’s present and future, that we leave readers thinking our experience is one of unending woe, for which we are seeking sympathy.
Far from it: being the mum and dad of such a wonderful, loyal and affectionate girl is a privilege, an experience of love and fulfilment – there is far more laughter than tears. It is pure joy to be so close to someone who loves affection, laughter, watching her favourite programmes while holding hands, hugs, swimming, beaches, riding on her twin-rider bike…ice cream…. life.
As Helen’s parents, it took us a while to realise the importance of sex-based rights for both her, and for girls and women like her. These rights are under threat. These are the girls and women whose severe disabilities mean that nearly every aspect of their days and lives is planned for them, and done to them. They have no mental capacity (they are fully reliant on others to take decisions in their best interests). They have no voice.
Their disabilities leave them with no sense of stranger-danger. They are unable to tell anyone if they have been flashed, groped, or raped. They are unable to advocate for themselves or draw attention to their vulnerability through social media such as Twitter. They are entirely dependent on others, twenty-four hours a day, seven days a week.
Their threatened rights include:
- The right to have women-only care staff dealing with intimate care, helping use the loo and manage menstruation.
- The right to go to a women’s clothes shop, changing room, or bra-fitting service, and for there to be only women present.
- The right not to be seen naked by or see naked men in swimming pool changing rooms (Helen loves swimming).
Obviously, nobody could imagine that male staff would be thought routinely eligible for roles providing intimate care to severely learning-disabled girls, right? Wrong.
How a journey of awareness began
After we received the school’s new policy, allowing male members of staff to be responsible for Helen’s intimate care, we contacted the school to question the change. We were told that the new policy had been agreed
“after seeking advice from our HR Department, the CIPD (Chartered Institute of Personnel and Development) and the partner schools we work alongside. We have also used our Local Authority’s template for writing the policy.”
We persisted and sought our own informal advice. Helen’s school also sought theirs, this time from a lawyer:
“to ensure that we are doing the absolute best for our pupils without discriminating against any of our staff team.”
This lawyer did indeed tell them that the policy had to be changed back to same-sex intimate care, to comply with the requirements of the Equality Act (2010). However, during these discussions the view was expressed that the law was outdated and against majority opinion. We ended up in a situation where it was agreed that Helen would receive same-sex intimate care, but this was because of parental preference. In other words, Helen’s intrinsic and necessary rights to safeguarding and dignity were now conditional on others’ permission, on us. There is no doubt in our minds that a priority for the school was to be able to appease, to be able tell the staff, the parents have insisted on it.
This was the starting point of our journey: that a special school, with all its expertise and experience of teaching and supporting girls with severe learning disabilities felt justified in tossing away Helen’s rights in order to celebrate staff diversity.
Severely learning-disabled women and sex-based rights
Having come to realise how important it was for Helen to have her privacy and dignity respected and her safety protected, we then began to gain a greater appreciation of the importance of these issues, these sex-based rights. We saw that the erosion of these rights, important for all women, cause great damage to some groups of women in particular, including (in no order of priority):
- Female prisoners
- Females accessing rape counselling services
- Females accessing domestic violence shelters
- Female sports players, elite and grassroots
- Females unable to deal with their own intimate care, including
- Learning-disabled girls and women
- Women with advanced dementia
- Other disabled females
Having started, with horror and disbelief, to look further into how these rights are being chipped away at, we encountered the concept of gender critical (GC) beliefs: the view that the characteristic of sex, whether someone is male or female, is biological and immutable, and cannot be conflated with gender, a personal, internal perception of oneself, based on labels of masculinity or femininity.
Even the briefest of dips into social media reveals vast numbers of gender critical proponents (and, it must be acknowledged, opponents). However, as we explored further, looking for ways to protect Helen now and in the future, it seemed to us that although severely learning-disabled girls and women are amongst the most vulnerable (not least because they have no voice), they receive relatively little attention in gender critical discourse.
Social Services commissioning database
Helen’s school had proposed using gender rather than the protected characteristic of sex to determine which members of staff were eligible to provide intimate care for severely disabled girls. Whilst many people use the two words interchangeably in casual conversation, in formal, legal terms they do not mean the same thing at all. The detailed UK legal meanings are set out here by the Office for National Statistics What is the difference between sex and gender? – Office for National Statistics (ons.gov.uk).
Our simple and surely reasonable wish, that our daughter’s intimate care, including menstrual care, should be provided by staff who were female, like her, was at risk of being dismissed. Rights on the basis of sex cannot be honoured unless the sex of all parties involved is known and recorded.
Our Local Authority Children’s Social Services database holds details of all severely-disabled children in the Borough. In January 2022 we were appalled to find out that this database, used as the basis for commissioning services, records children’s gender, but not their sex; similarly, their HR databaserecords staff members’ gender but not sex.
Our local authority Children’s Social Services Team seem, like Helen’s school, to be driven by notions of inclusivity, leading them to put in place systems that leave them unable to ensure that severely learning-disabled girls participating in its respite services and playschemes (for instance) have their rights to same-sex intimate care respected.
Worryingly, they have told us that the system they use, which has no field to record the child’s sex, is used by some 50% of local authorities across England.
Our dispute has so far gone on from January to May 2022. We are making progress. We are arguing for two changes:
- that it is essential for Helen’s sex to be recorded, to protect her rights
- that the recording of gender must be optional, not mandatory
We are not at all sure whether Helen has a personal perception of herself based on labels of masculinity or femininity. If she does, we have no way of ascertaining what it is! It would be deeply disrespectful to her for us to try to guess what her answer might be, or whether her answer would be ‘prefer not to say’. We must be able to leave the gender field blank.
Our right as parents to speak on Helen’s behalf
As Helen’s parents we are at present entitled to speak on her behalf, and to give or withhold consent on her behalf. This entitlement will change as she gets older.
Currently our voice is, to all intents and purposes, our daughter’s voice. If we object on her behalf to gender being recorded, that must be treated as her objecting. This will change once she reaches 18. Our voice will still count, but in some cases as a voice to be consulted rather than as a voice with authority. In England and Wales, under the Mental Capacity Act:
Family members can continue to make many decisions for their adult child in their best interests. However, this will not automatically be the case in all aspects of their child’s life. Importantly, however, the Act requires professionals to consult with family members when an adult lacks the mental capacity to make a decision for him or herself. Family members can challenge professionals if they feel that they are not being involved. Ultimately, families can ask for things to be referred to the Court of Protection if they feel that their involvement is being limited or decisions are being taken that are not in the family member’s best interests.
So our sense of urgency is driven not only by the thought of us eventually being no longer able to care for her (and see the comments from the mother of another learning-disabled woman in the following section, about her fears as she gets older), but by the thought that our Local Authority will have greater power to make decisions about our daughter once she is eighteen, less than two years from now.
Cassie’s story – a severely learning-disabled woman without a voice
The most severely learning-disabled women cannot speak, write or type; they lack capacity; they have no voice.
A particularly harrowing case is that of Cassie, an autistic non-verbal woman in her mid-fifties, with severe learning disabilities. She had lived in institutions since childhood. Over several years from 2013 her health deteriorated, with no cause being identified. Eventually she was tested for HIV and found to be infected. It was determined that Cassie’s HIV had been sexually transmitted. The severity of Cassie’s learning disabilities was such that she did not have capacity to consent to sexual relations, and so must have been raped. The only men who had access to her were the male care staff in her institution, her home. It was concluded that she had been raped by one or more of her care staff. The perpetrators have not been identified and may still be working there.
For the full horrific details, see adult-b-final-report-nov-2018.pdf (brent.gov.uk)
As with Helen, Cassie’s life had included joy and happiness.
[Cassie’s mum] Cassie was happy and outgoing… she enjoys being part of things. She liked the music room. She’d jump up and down. She was happy.
[Cassie’s support workers] Cassie is… outgoing and likes being outdoors. She is not violent but pleasant. She jumps and claps when happy. She’s a nice, noisy, happy lovely lady, friendly and cheeky.
Both Cassie’s mum and the review panel into her case comment on her lack of voice:
[Cassie’s mum]: What chance have you got to catch the rapist? This is a service where people can’t speak.
[Cassie’s mum]: When asked if they [institution staff] had noticed changes in Cassie’s behaviour they said ‘No!’ The people responsible for a service where people can’t speak.
(For non-verbal learning disabled people, who cannot themselves report distressing experiences, there is an onus on carers to be aware of behavioural changes and consider what might be the cause. It is known that Cassie was raped – is it really believable that there were at that point no changes in her behaviour?)
[Review panel document] Until the months before Cassie’s HIV diagnosis, her tearful distress was seen as behavioural rather than as an undetected health problem.
Please reflect on that last comment. Imagine: having been raped, but unable to tell anyone, unable to seek counselling, comfort, medical assistance, even sympathy; having been infected with HIV, and as the symptoms of the disease develop, evidencing tearful distress – and your distress being ‘seen’ (we don’t think it is unreasonable to interpret this as ‘dismissed’) as a behavioural issue. As Cassie’s mum says, this response was from a service for people who can’t speak: distress was Cassie’s only means of crying for help, and it was ignored.
In conclusion – your severely learning-disabled sisters need you
Are there any groups of women for whom sex–based rights are more vitally important than severely learning-disabled women such as Cassie and Helen (and women with advanced dementia)? Are there any groups of women less able to advocate for themselves? Are there any groups of women more in need of the voices of others, not just family members, but all who are concerned with sex–based rights, to shout from the rooftops on their behalf?
It is fantastic that women sports players have Sharron Davies, Daley Thompson and other big sporting names to speak out about the importance of keeping women’s sport single-sex. We have huge respect for these celebrities for putting their heads well above the parapet, and for dealing with the consequent vitriolic abuse. But where are the celebrity voices advocating for women such as Cassie who are voiceless, women facing not unfair exclusion from a sports team or podium, but facing rape, HIV infection and their tearful distress being seen as a behavioural issue?
There are of course disabled women speaking out on this issue (and we would like to pay tribute to @PankhurstEM, who has done so much to raise our awareness of such cases), and there are disabled female celebrities. But, almost by definition, there are no big-name women with severe learning disabilities to represent the interests of our daughter and girls and women like her.
For the moment, and we hope for years to come, our daughter has us to speak on her behalf. But to quote again from Cassie’s mother:
As I get older and my body deteriorates, I think of Cassie, and this makes me tearful…I worry about what will happen to her when I am not here anymore.
What will happen to Helen when we are no longer able to care for her, when she is living in an institution of some kind? Who will be in charge overnight? Who will be dealing with her intimate care? Will we have to face the fears for Helen that beset Cassie’s mum?
“I trusted them…When I discovered that Male1 was the weekend supervisor, I became even more distressed – I don’t know what goes on there at nights….It’s really painful for a mother to think there’s a man there at night. It’s on my mind, heavily, constantly. I want her to move somewhere with women staff. When Cassie was leaving, Male1 was sent in a car to meet us. I was so upset I couldn’t say anything. It was so distressing. One time at the home, Cassie saw Male1 and moved as far from him as she could. She didn’t want him near her! I do not know who raped her. There’s one…who likes to offer his services, but not in a good way. I don’t know who raped my girl. They might still be there, allowed to work. I don’t want men to work with Cassie at night.“
We don’t want men to work with Helen at night.
It is so important for Helen, for Cassie, and for all severely learning-disabled women that their sex-based rights are preserved and enhanced, that there is societal recognition that many elements of their care should be delivered only by staff whose sex is female: that when we, the parents, are no longer able to look after them, their rights will be respected.
If you are reading this blog, you almost certainly have a voice, a social media presence. If you have things to say about sex–based rights, please remember Cassie, please remember our daughter, Helen. Please advocate for their learning-disabled needs and rights: