Profound autism & same sex intimate care: a mother’s tale from the coalface

“From where I stand on the ground, it feels like the legislation protecting the same sex intimate care of non-verbal, severely disabled girls and women is being overlooked, eroded and undermined - not because of ‘stakeholder’ consultation or debate, but because of the scale of misinformation (and often total lack of sex-based data) that is out there, resulting in very disabled girls and women, often non-verbal, with no mental capacity, having their rights to female-only intimate care rights removed.

Over the last year, my husband has sent out FOIs to London’s local authority adult social care departments to determine how many record the ‘sex’ of its vulnerable female clients. Just three currently do - Richmond, Wandsworth and Camden. Twenty-nine others only collect data on ‘gender.’ 

When was the field for the protected characteristic of sex deleted across adult social care departments in London, affecting thousands and thousands of vulnerable, disabled women, aged 18 and up? Why has it been replaced by ‘gender’, which is not a protected characteristic? For what purpose is data on ‘gender’ being collected? Who decided this? What was discussed in the meetings? Where are the minutes of these meetings? Where are the equality impact assessments? Why are some local authorities recording sex, and others not? 

There are so many other examples that we’ve experienced too. From school changing its same sex intimate care policy to a cross gender one, ‘to celebrate staff diversity’, to our social worker claiming that ‘nobody collects data on sex anymore’; to her then saying that service providers (e.g. overnight respite providers) ‘cannot guarantee same sex care and it is not in our control to insist on this’, to then being told that our non verbal, profoundly ASD daughter’s social care assessment should start off with the sentence ‘Xxx lives and presents as female’. 

All of these have been challenged. Successfully. But we shouldn’t be having to do this. The reality is, however, there is no one who we can turn to other than ourselves - the EHRC is a very long way away in the conversations we are having to have at the coalface. 

Whilst legislation might state that there are serious consequences for ignoring sex-based rights, who sees or knows about these everyday occurrences? There were certainly no consequences for the dreadful rape(s) and resulting HIV diagnosis for Cassie (a disabled woman), although there was an extensive case review 

From where we stand, schools, local authorities, disabled children’s services, adult social care services & service providers have lost sight of the importance of ‘sex’ and the recording of ‘sex’ and why this is proportionate and balanced and matters to the safeguarding and dignity of very disabled girls and women.   

Until balance is restored, I do not believe that service providers, in the current (Stonewalled) climate, realise, or even perhaps care, about the scale of risk, insult and discrimination inherent in their mindset and practice."