Review: Fy Chwaer a Fi (My Sister and I) on S4C
S4C is a Welsh-language TV channel that only broadcasts in Wales, although you can get it on satellite (not cable) and online, and it offers subtitling of Welsh programmes into English as the majority of people in Wales speak English and very little if any Welsh. The programme is about two young women, identical twins Kirstie and Catherine Fields from near Llanelli, who have a very rare degenerative neuromuscular disorder that scientists know no other cases of, so they have named it “Fields’ Condition”. They lost the ability to speak aged 14, and both use a wheelchair and have poor muscle control and painful spasms. As widely reported in the press, they both recently acquired communication aids which the Huffington Post two days ago called “birthday gifts, courtesy of the National Health Service”, although other newspaper coverage indicates that they had been using the aids (or devices like them) for a few months (such as this article from April with a picture of the girls in front of wheelchair-mounted tablets). The twins had earlier been in a BBC documentary about the hospice (local paper write-up here), Ty Hafan, and that programme and this also featured another hospice service user, Amy-Claire Davis, who also has an undiagnosable degenerative disability.
This programme featured interviews with the girls’ mother as well as family footage of the girls running around in their rooms (though sometimes falling over) and opening Christmas presents before they lost the ability to walk and speak, which the twins said they both enjoyed watching although they felt sad they could no longer do these things. This also heavily featured their time at Ty Hafan, learning to use their communication aids and talking with family support practitioner (at the hospice) Hayley Mason about how they felt about their condition. Hayley obviously seemed upset that the two of them had been watching each other suffer but had been unable to talk to each other about their feelings, and obviously empathised, saying “it’s really pants, isn’t it”. The two were shown getting a tattoo (which their mother had previously forbidden), having an 18th birthday party with a band, and going to Disneyland with their parents. Towards the end, Hayley talked with them about their future plans, about marriage (one said she would like to get married but still live at home, and was embarrassed to talk about sex while the other was forthright about it), and Hayley reported that they had also talked off-camera about the likelihood of their dying early. One said she believed in heaven but not in God, because she believed a God would not subject them to the ‘hell’ of their condition.
The programme was very well-made and captured the emotions both of the condition and of the event of the two girls being given a voice again very effectively. It didn’t attract pity to the two girls, who said they wanted to be seen for themselves and not just their disability and were obviously of a generally happy disposition — Catherine, I think, said at the end that she had a philosophy of “live, love, laugh” rather than dwelling on the difficulty. It certainly displayed the attachment the two girls had for each other, and they are obviously surrounded by people who love them and care for them very well. Towards the end, Kirstie is able to whisper “I love you” in Welsh to her sister, but that was obviously a rare occurrence for her (Cath was only able to use her computer to say that, although Kirstie said they “spoke with their eyes”). The girls are native Welsh-speakers, but the devices they have been given cannot use Welsh, but are obviously grateful to be able to speak at all. (Welsh is spoken by about a fifth of Wales’ 3 million population, but most of those can speak English and often liberally mix English into their Welsh, as seen with several of those interviewed, which would make it more difficult for anyone devising a speech aid to cover Welsh, besides the few takers.)
The programme could have also included some coverage of the difficulty people have in getting hold of speech aids, even for children. I know someone who had to use one for two years and also had to run a campaign to get the NHS to fund one, although she eventually got her voice back; a mother I know has a daughter who uses one, although it is really inadequate with limited means to express her feelings, and her visual impairment makes that even more difficult. She has also told me that they will only have access to that until she turns 18, and will then have to raise their own funds to buy her a speaking aid when she becomes an adult. The devices until recently cost thousands of pounds, although more recently it has become possible to get speech software for iOS devices which many users find quite adequate, although iPads sacrifice durability (speech aids are mounted on wheelchairs and are likely to have to be used in the rain) with portability (an iPhone or iPod Touch can be placed in someone’s pocket, useful if theirlack of speech is their main disability and they can walk). With some people, their own disability is a huge barrier to using a communication aid; with others, which seems to include the Fields twins, the impediment was only money. It appears that this is something the NHS can afford, but makes people fight for months or years for, in the case of these two young women, missing valuable years of their lives; 14 to 18 is when people normally sit their GCSE and A-level exams and it was not stated whether they had been able to do either. (This is something I covered in an earlier review of a BBC documentary featuring Jeff Brazier and his brother who has cerebral palsy; these sisters were lucky not to have a Z-list celebrity brother throwing his weight around.)
Also, the programme (like almost all other media coverage of the twins going back years) over-emphasises the uniqueness of their condition. Although the particular genetic abnormality that leads to it may be unique to them, the symptoms really are not: loss of muscle control, spasms, loss of voice, loss of mobility leading to the use of a wheelchair. It sounds a lot like muscular dystrophy and they should be getting support from any local MD support groups there are, rather than being given the impression that they are alone with their condition. (The MD organisations cater to people with a lot of degenerative muscle disorders, not just the classic forms like Duchenne’s MD.) None of the coverage gave the impression that they were receiving any such support, and even if “Fields’ condition” is not one of their named conditions (it wouldn’t be if it affects only two people worldwide), they might be eligible for the MD groups’ support, and so it should be investigated.
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