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21 April 2021

World Cerebral Palsy Day

October 5th is World Cerebral Palsy Day. Changing Places campaigner Samantha Buck has been working with the Changing Places Consortium to share her story on the website and promote the need for more Changing Places toilets across the globe.

Finding a clean and safe place to change the incontinence pad of her son with cerebral palsy was the catalyst for Samantha Buck becoming a champion for Changing Places.
A basic civil right
There is no question that people with disability deserve the same rights that all members of the community enjoy. However, many people living with disability are confined to their homes due to a lack of appropriate toilet facilities in public places.
Being able to go to the toilet is a basic civil right, however every day thousands of people with a disability who have difficulty with walking or standing, face the choice of being changed on the floor of an unhygienic public toilet, remaining in soiled clothing or not going out at all.
These people often need support to use the toilet or to have their incontinence pad changed. Standard disabled toilets do not provide changing benches or hoists to allow people to safely use the toilet, and most are too small to accommodate their carers or wheelchair.
Changing Places is born
Determined to provide a solution to this problem, the Changing Place Consortium was founded in 2005 and the campaign was launched officially in 2006. The Consortium combines the expertise of UK organisations, Pamis, the Centre for Accessible Environments, Mencap and knowledgeable individuals who have worked in the field of learning disability for many years. Together, the Consortium lead the campaign for the installation of Changing Places toilets in all large buildings and community spaces in order to help people with a disability to use the toilet in safety and comfort.
“Changing Places toilets have more space and the right equipment, including a height adjustable changing bench and a hoist. We aim to help the thousands of people with profound and multiple learning disabilities, motor neurone disease, multiple sclerosis, cerebral palsy, stroke sufferers, people with continence issues, amputees and many others,” Rossanna Trudgian, co-chair of the Changing Places Consortium, said.
“Importantly, these facilities have a much wider impact as they mean that families can now access their local communities in a way that they couldn’t before Changing Places were installed,” she said.
Samantha Buck’s son Alfie was born in 2006 with severe brain damage. He has quadriplegic cerebral palsy and severe dystonia, epilepsy and reflux. Alfie spends most of his life in pain.
“When Alfie was five years old we were given a RADAR key to access the disabled toilets in my home town which I was very pleased with – until I actually used the toilets and realised that they are not for the severely disabled,” Samantha said.
“If you are severely disabled or paralysed, you need carers to lift you out of the wheelchair and place you on a flat surface to have your continence pad changed.
“With my 10 year old son, I am forced to lay him on a urine soaked floor inside the disabled toilet, with the 2nd carer standing outside with the wheelchair. They have to pass to me the changing accessories through the open door for all passers by to view. This is one of the most awful experiences we have to face every time we go out,” she said
Without ‘Changing Places’ toilets the person with disability is put at risk, and families and carers are forced to risk their own health and safety by lying their daughter, son or loved one on a toilet floor.
“This is dangerous, unhygienic, humiliating and undignified. We would not change a baby on the floor of a public toilet – so why on earth is this acceptable for disabled adults?” Samantha said.
Samantha has been very active in campaigning for Changing Places, including petitioning her local Council. She has also created a petition to encourage local councils to get on board, which currently has over 35,000 signatures.
Partners for change
The Changing Places campaign, a true example of a civil rights contribution to the cerebral palsy community, is funded by partner Aveso. Since 2013, Aveso has proudly sponsored the campaign and provides top quality services and packages to providers who are installing Changing Places facilities including consultation, survey and installation of equipment.
The campaign has now grown to over 840 facilities across the UK. A new website (launched in 2015 with funding from the British Government) in partnership with the British Toilet Association includes a map that has made it easier for people to plan their journeys and find their nearest Changing Places.
Strong campaigning has brought results in areas like football stadia and motorway service stations this past year, with Changing Places truly changing lives.
“People do not like change, they do not like talking about toileting, and people are reluctant to create change. Change is slow, but we are getting closer to making Changing Places’ toilets ‘the norm’,” Samantha said.

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