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Ettie and Alison's story
Background
Our daughter Ettie is 12. She has athetoid cerebral palsy, caused by a birth injury. This means that her body doesn’t do what she wants it to do. Her whole body is affected meaning she needs special supportive seating and a lot of help to do things most of us take for granted such as eating, drinking, communicating and even going to the loo. We have found we have had to fight hard for everything for Ettie – for the right wheelchair, appointments for shoes, for funding for educational provision. Sometimes we have just had to do things ourselves – find funds for a powerchair because she isn’t provided one, pay for private physio therapy, find our own carers. We are lucky to be able to do this, and generally these services at least have some identifiable representatives or organisations we can work with.
One particular problem which is threatening to limit Ettie’s life massively is the lack of suitably accessible toilets, particularly in our home town of Frome. While the town has disabled toilet facilities, they are not useable for Ettie -and quite a few others in Frome. She needs a hoist, a changing bed and a supportive toilet seat in order to be able to use the bathroom, none of which are available. Fighting for these to be provided is proving much worse than other efforts we have had to make. A major reason for this is that there is nobody who is actually responsible. You can expend a massive amount of time and energy talking to councils and officials, but as nobody is actually tasked with sorting it out, nothing gets done.
Ettie loves to go out and about. She likes meeting up with friends, eating out in local cafes, visiting the library and the shops, going to the park, going swimming and going to the cinema. The problem is, with no suitable toilet facility in Frome – not in the town centre, not in the park, not at the leisure centre – trips to town have to be carefully planned, cut short or avoided in favour of towns further afield who do have the right facilities. When she was younger, and easier to lift, we would all just put up with the indignity, carry a mat around and lie Ettie on the floor to change her, hold her up on the toilet or use the floor of our van. Now though, even these unpleasant options are no longer possible as Ettie is becoming too tall and heavy for us to lift her safely. To be honest, I look back now and cannot believe we have put up with this state of affairs for so long.
Start of Campaigning
Several years ago, when it started to become increasingly challenging to keep Ettie clean and comfortable when out and about, I found out about these amazing Changing Places toilets. Ettie had first come across one in Cardiff on a trip out with carers to watch Justin’s House and was delighted to find a toilet just right for her. I decided we really needed these in our area. Our town council publicised some consultation events about the development of our town so I decided to bite the bullet and go along to raise the issue. I felt quite hopeful; there was a possible new development in the town centre which would have been ideal as you could make it a requirement that the developers include one. A venue right in the town had received funding to improve the facilities. Again, this would have been a perfect place for a Changing Places toilet as it is open all day and evening and is staffed. There was a new medical centre under development.
I flagged up the issue at more than one of these events and emailed the town council who made supportive noises. The town centre development fell through, but then the venue, hospital and medical centre all opened without any appropriate toilet facility. I felt so angry. I felt I had made a lot of effort to raise the issue in the right forums with the right people and nobody seemed to have taken any notice.
When I heard that millions of pounds were to be spent redeveloping our towns’ Leisure Centre, I saw another opportunity. I took time to find out about the consultation, which was via email, and wrote a really detailed email specifying the kind of changing facilities Ettie, and several local friends need. Ettie loves to swim and is well-known at the Leisure centre as she had swum there since she was very small. I received a kind reply thanking me for all the information and saying that they would take it on board. To my horror, when it opened, not only was there no hoist but they had actually succeeded in making the whole changing situation less accessible. They had put in very heavy doors, added a new wall which made a tight turn to access the disabled changing room and created a narrow thin room with a few grab rails which is totally useless to us. They allow us to use the medical room which has a height adjustable bed but there is no lock on the door and it is still used as a dumping ground - it really makes it obvious that nobody has really thought about our needs at all.
These experiences made me realise that with nobody actually responsible for providing these facilities, it is basically left to individual families to make a noise and do what they can. This seems outrageous and unfair as families like ours already have so many battles to fight. Liaising with faceless District Councils is really hard. Participating in what now appear to be pointless consultations is disheartening. With no clarity over responsibility, no signposting of how they are supposed to be funded and no legislation to compel large businesses, organisations or councils to include these sorts of facilities in large scale developments, it makes this issue far too easy for every to effectively ignore – of course while they still make kind noises and shake their heads at the terrible situation.
Fortunately, I made contact with a local District Councillor whose support and attitude seem to be really helping us to move things forward. He realised that if he didn’t help tackle this situation then frankly nobody would. With his help, we’ve been able to get conversations with key people at both the town and district council. This has given me renewed energy and determination. I contacted other families and we set up a facebook group to communicate on the issue, hoping to make contact with others who need the facility in order to make a stronger case. Through these contacts we gathered enough stories and photographs for our local newspaper to run an article. The journalist also advised us to make a video which he edited together and released along with the article online. This seems to have had a massive impact with thousands viewing it as well as some people commenting and getting in touch to ask how they can help.
While the reality of a toilet in our town is not any nearer in actual terms, there are small signs of progress. The campaign has flagged up that it isn’t just Frome which is lacking, but the whole Mendip district. So we have joined up with other small groups in other local towns to push it on a bigger front. Our supportive District Councillor forced the issued by tabling a proposal that the District Council take some form of responsibility for ensuring these facilities are provided. Several of us went to the meeting to speak out about it. This meant that a vote had to be taken. The support was unanimous and the Equalities Panel are now working towards a formal consultation, drawing up proper costing and undertaking feasibility studies for potential venues. They are going to be working with both town councils and the county council as well as local groups. Meanwhile the town council are actively exploring the possibility of a Changing Places in a local park which would be another amazing addition. Funding will no doubt be an issue, and there will probably need to be multiple funding sources, but it is great to have other people actively working on possible solutions now.
Our daughter Ettie has been incredibly brave really at coping with the increasing limitations on her life. We can’t lift her onto slides any more. She used her communication device to say ‘goodbye slide.’ We can no longer lift her into the jacuzzi she loves so much at a nearby swimming pool. She has said ‘goodbye jacuzzi.’ But something as fundamental as being able to go out and about in your own home town without having to travel home to use the toilet- the five minutes journey home turns into forty five when you have to strap wheelchairs into vehicles and get them out again- is not something which I can accept Ettie having to say goodbye to.