Getting in front of the right people is so important when campaigning for change. On Friday 4th December, I did something that I’ve never done before. I stood up on a stage in front of 330 people and told my story. A story that is replicated by thousands of families throughout the UK, and millions throughout the world -  the need for better changing and toilet facilities for families living with disability.  Specifically, the challenges that our children and loved ones face when away from home, which more often than not involves being changed on a toilet floor. 

The presentation was at the Loo of the Year Awards, attended by key players in the toilet and personal hygiene industry, as well as leading retailers, restaurant and pub chains, visitor attractions, holiday parks, shopping centres and local authorities. 

The room was pretty silent as I spoke.  So I think I can safely say that I achieved my goal or raising awareness. 

Speaking in public is not something that I would have put myself forward for before I became a special needs mum. 

But as Hadley’s parent, I feel a real sense of duty to get involved in the Changing Places and Space to Change campaigns and to try to make a difference. This was a fantastic opportunity to get in front of some important opinion formers and decision makers that I couldn’t possibly pass up. It’s amazing what we can do as special needs parents - the things that we find ourselves doing that would normally be way out of our comfort zones. We are inspired by our incredible children who deserve so much better, and that makes us a force to be reckoned with. 

And I’ll tell you a little secret. I actually really enjoyed standing up there. It felt good to educate a few more people. To say my piece and even more so to get a supportive response. I feel like we are slowly getting somewhere.4 Here's just a little bit of what I said...

This is my son, Hadley.  He was born severely prematurely and as a result he has Cerebral Palsy.  Hadley, as you can see, is a wheelchair user.  But what you can’t see, is that he is incontinent because of his condition and needs nappies.  

Standard accessible toilets do not meet the needs of many of the disabled population. They almost always exclude anybody who cannot use a toilet independently, including Hadley. This is one of the most heart-wrenching challenges we face when away from home, whether that is shopping, days out or hospital appointments.  Hadley is too big for baby changing tables and cannot stand unaided or sit on a standard toilet.  So we are regularly faced with the harsh reality of having to change him on a toilet floor. 

An often disgusting, urine-soaked, toilet floor.  And if a private disabled toilet is unavailable, we have no other option than to change him in the ladies or gents or the boot of our car in view of others. It’s undignified, unhygienic and unsafe.  It reduces both of us to tears. You wouldn’t dream of laying a new born baby on a filthy toilet floor, and yet still it is widely acceptable for disabled children and adults to have to endure this.  We regularly avoid going out for fear of the toilet facilities we will be faced with.  It is utterly soul-destroying that a five year old should have his life restricted so much already. 

And it’s not just Hadley who is at risk. I put my ability to care for him in serious jeopardy every time I lift him in and out of his wheelchair and up and down from the floor, trying so hard not to incur a back injury.  I struggle with a five year old. I have no idea how parents and carers of older children and adults cope. They must be superhuman!  So like many other parents and carers, I spend most of my spare time campaigning for change. Raising awareness of this issue and talking to businesses, local councils, the media, and anyone who’ll listen, about the need to improve facilities for families like ours .   Because I believe the main problem is not people’s willingness to help or change, but the fact that most people are unaware this problem even exists!   

We would like to see official ‘Changing Places’ facilities like this in all large public buildings including: Train stations, airports, bus stations, ferry ports, Sports stadiums, leisure facilities, museums, concert halls and art galleries  City centres and large town centres, supermarkets, Shopping centres, Major motorway service stations, town halls, civic centres and libraries Schools, colleges and universities, Hospitals, health centres and community practices.  I believe that they should be fitted to existing buildings retrospectively and should be included in all new public buildings as standard practice. A changing place toilet is an additional toilet and changing room for anyone with special needs or disabilities.  It includes a height adjustable, adult sized changing bed and ceiling mounted hoist.  As well as a peninsular toilet with space for a carer either side, plus plenty of space for carers and equipment to comfortably move around.  The recommended size of these facilities is a minimum of 12 square meters.  These pieces of equipment allow for the safe and dignified changing and moving of any person who needs help with their toileting and personal care.  

Ideally we would love to see Changing Places facilities everywhere. However, where space or finances are limited, any positive change to be more accessible, is better than none.  With the Firefly Garden Space to Change campaign, venues can gain awards for being more inclusive to families with special needs by:  Providing a height adjustable changing bench and mobile hoist  Or simply providing an adult length changing bench with safety barrier Even small businesses offering services to younger children can achieve a green award for providing a private hygienic facility with large changing mat. If this is not something that you offer already, and you’re not sold on the need by now, here are few bits of useful information.

There are over 11 million people with a limiting long term illness, impairment or disability in the UK. Any one of whom could have additional personal care requirements like Hadley. Disabled people spend over £12 BILLION a year, so surely just on a financial basis, it make sense to install these facilities. The Equality Act 2010 states that: service providers are required to make reasonable changes – including to the built environment – where a disabled customer or potential customer would otherwise be at a substantial disadvantage.  Surely having to be changed on a dirty toilet floor is more than a substantial disadvantage? 

The Equality Act also requires: that service providers think ahead and take steps to address barriers that impede disabled people. They should not wait until a disabled person experiences difficulties using a service.  I believe we are campaigning for facilities that are already a corporate social responsibility.  There are currently over 780 official Changing Places facilities in the UK which is brilliant. But we need so many more. To put it in perspective, the nearest one to our house is over 15 miles away!  I am hopeful, that by raising awareness of the need and by celebrating those who get it right, we will see a brighter future…. Where people like Hadley are no longer excluded from everyday activities, we often take for granted.

If just one of you goes home today thinking about how you can make a change, then the world will be a slightly better place tomorrow for my little boy, and the millions of other people living with these challenges.  Thank you so much for listening.  If you would like to join Sarah in campaign for better toilet and changing facilities get in touch using our contact form

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