In autumn 2017, a friend asked me whether it would be possible to find Easy-Read information for the public on Female Genital Mutilation. This would be useful for people with learning disabilities and also for any migrants who have a low level of literacy in English.
In August 2018, NHS England and NHS Improvement commissioned eight FGM clinics for non-pregnant women. As at December 2019, I was advised that these teams are collaboratively developing culturally sensitive and easy read materials – great news! Their current resources are not Easy Read.
At the present time it is really hard to find anything at all. After lots of online searching and emails, the best thing I have found is called My Body, My Rules from fpa and you can buy copies (or get freebies if you are a primary school) from here.
Below is a list of the organisations I contacted, along with their leaflets. What is perhaps even more concerning is the number of responses from people who appear to have no idea at all what counts as Easy Read, including the FGM campaign people at the Home Office, who insisted in March 2019 that nobody in the field has asked for Easy-Read materials, so they have no duty to provide them. This ‘no demand, so no duty’ position was reinforced in the House of Lords following a written question submitted by Baroness Hamwee on 24 April 2019. In April 2019, Baroness Burt kindly offered to raise the issue with Government.
I note in passing that (i) in the FGM Service at Chelsea & Westminster, women are seen with a health advocate or interpreter and the Specialist Midwife shows them pictures to explain things (but they have had no training in communication with people who have learning disabilities), and (ii) other media can be used too, such as theatre, (although there is no indication that this example is ‘Easy to Understand’ theatre).
If you know of anything relevant, please get in touch.
Why is this so hard?
I have been reflecting on why, after three years and dozens of emails to groups and organisations that champion the right of women to be protected from mutilation, I have been unable to find a single ally in championing this issue. Here’s some possibilities:
- I am wrong in my starting idea and there are in fact no women at risk of FGM who have intellectual disabilities or poor literacy. Or perhaps there are a few, but numbers are so small that they can be ignored.
- My attempts to locate resources and supportive organisations have been inadequate and there is in fact great support out there that I have not yet found.
- Organisations that challenge FGM are simply failing to reach women with intellectual disability or poor literacy and that group in society are so marginalised that nobody even notices that they exist.
- The very idea that women with intellectual disabilities have sexual organs and even sexual lives is just too difficult to think about so it is best to brush it under the carpet and work on something else.
- My preoccupation with obtaining an Easy Read leaflet is missing the point, and services are in fact brilliant at communicating the issues to people with literacy challenges or intellectual disabilities in other ways. This would mean that there is something distinctive about FGM that means standardised written materials are inappropriate for this group of women, despite the fact that there are dozens of written FGM resources for other women, and Easy Read leaflets on a myriad of other topics are freely available.
The organisations I contacted in autumn 2017 are listed below along with some comments about their response. All those who responded to my email in 2017 were contacted again in autumn 2018 to ask if there had been any progress. All these organisations have been invited to view this page and respond.
- 28 Too Many have training packs but nothing that is Easy Read. They acknowledge the need, lack the resources to produce one, but would be eager to distribute an Easy Read leaflet if it could be created.
- ACCM UK have produced this postcard.
- Africa Advocacy Foundation have a leaflet.
- Afruca have a leaflet
- Ann Craft Trust
- Avon looked hopeful, as this teacher’s pack refers to an easy read leaflet with photosymbols, but none of the links work.
- Books beyond Words would like to do something, but each book needs to be fully funded before they start, and each new title costs tens of thousands of pounds to produce.
- Buckinghamshire Safeguarding Children’s Board are were going to develop an easy read leaflet about FGM, but the relevant staff member left and has not yet been replaced.
- Dahlia project
- Dartford and Gravesham NHS Trust have a leaflet.
- Daughters of Eve have a suite of resources here.
- Department of Health
- Dignity Alert Research Forum
- Easy read websites offer downloadable leaflets on health issues in easy read format. None of the websites listed here have anything on FGM.
- End FGM European Network
- Equality Now have a factsheet in English, French and Spanish.
- FGM Aware (Scotland) have a webpage and this postcard. They would be happy to help development of an easy read leaflet, such as by consulting with community organisations on a draft.
- FGM national clinical group have this booklet and this leaflet and have produced some clinical standards.
- Forward have made a video and a leaflet.
- Foundation for People with Learning Disabilities
- fpa have produced this leaflet for schools.
- Freedom Charity have a webpage
- HM Government minister responsible for FGM policy is Sarah Newton and the previous government’s Home Affairs Committee commissioned a report but no further work is planned.
- Home Office has a FGM Unit that has produced a 4 page leaflet and a 20 page booklet. Their 2018 campaign on FGM was launched in October, but still with no recognition of the importance of access to Easy Read for people with learning disabilities or people who lack a ‘basic understanding of English’.
- Image in Action
- Leicester Safeguarding Children Board has a leaflet and Leicestershire and Rutland Safeguarding Boards has a webpage.
- London Safeguarding Children’s Board have a standard leaflet that they offer to translate into Easy Read on request, but, on inquiry, I was directed to Forward.
- Muslim Council of Britain have a leaflet.
- National FGM Centre have a leaflet for pregnant women.
- NDTi and iHAL
- NEFTA do a lot of research in Australia and have a booklet
- NESTAC say, ‘Women and young adults from our FGM Group have been working on producing a community and child friendly leaflet aimed at illiterate people or those struggling with English language. We hope the leaflet will be ready in February 2018.’ the website was checked in April 2019 but there is no mention of such a leaflet.
- NHS has produced a leaflet explaining the duty placed upon health professionals to report FGM in girls aged under 18
- NHS Choices has a webpage
- NHS England has a national FGM prevention lead, Vanessa Lodge.
- NHS specialist services for people who have experienced FGM.
- NSPCC has an excellent safeguarding programme called PANTS. There is a leaflet for parents with learning disabilities, and versions in Latvian, Lithuanian, Polish and Russian. They also have this webpage on FGM.
- Petals has presented information in a creative, interactive way here.
- Read Easy don’t do anything on Easy Read or work with people for whom English is a second language
- Rose Clinic has a leaflet and recognise the need for an Easy Read leaflet and would be interested in helping to produce one.
- Royal College of Nursing have a 24 page leaflet.
- Royal College of Obstetricians and Gynaecologists has a leaflet but do not do Easy Read ‘due to limited resources’. They would be pleased to see another organisation use their information to create one. They have produced their leaflet in large print and audio versions here.
- Royal College of Paediatrics and Child Health has a webpage.
- Southall Black Sisters
- The Tackling FGM Initiative
- University of Nottingham, Dr Catrin Evans, principal investigator
- Women’s Institute