Two weeks ago I travelled to Manchester to meet the Clos-o-Mat team. Clos-o-Mat has installed 150 Changing Place facilities across the United Kingdom.

If you haven’t heard of a Changing Place toilet you really need to check them out.

Quite simply – they are perfect.

They meet the needs of people of all ages with profound and multiple learning difficulties as well as other medical and physical conditions.

They are a minimum of a 12 sqm space including a height adjustable changing bench, hoist, a centrally placed toilet and a privacy screen.

There are over 700 Changing Places across the UK.

In an ideal world, a Changing Place toilet would sit alongside every public toilet and be available in every public venue.

Unfortunately we don’t live in an ideal world and for now they don’t.

Space to Change is just a starting place to help make life that little bit easier for the Firefly Community.

It’s about being able to spend the whole day at your favourite venue, not having to pack towels, changing mats, anti-bacterial spray and nappy bags just to go for a coffee or to your local shops.

For the venues Space to Change is targeting a Changing Place facility might never be an option – they simply don’t have the space.

Other venues like shopping centres with almost half their units empty can’t make the substantial capital investment required to install a Changing Place facility.

That doesn’t mean they can’t or shouldn’t do anything to help support families who have young children with toileting needs.

Space to Change provides a viable alternative for small businesses who cater for families with younger children.

When I think of my own family situation we enjoy trips to our local farm, a visit to the soft play area or the play park.

These are places for families who have young children.

They are unlikely to ever have a Changing Place facility but they could quite easily provide one of the 3 Space to Change Levels.

Green – Private hygienic facility with large changing mat available

Orange – Adult length changing bench with safety barrier

Pink – Height adjustable changing bench with mobile hoist

For very small businesses and venues the Green Level might be the very best they can offer.

To receive a Space to Change award even at the Green Level, they must ensure their Space to Change facility is spotlessly clean, they must provide an anti-bacterial cleaner and a large changing mat together with slip-resistant flooring, tear off roll and a nappy bin.

The space must be large enough to accommodate the child, the carer and the child’s wheelchair in a private area.

If I know that somewhere will provide a Space to Change facility for me with my child today and that their staff will be understanding, helpful and accommodating – it will make things easier for us during this particular time in our lives.

I hope that the Space to Change campaign helps open up a conversation.

It gives businesses an opportunity to make immediate changes that can make a difference to families who have young children with toileting needs while they work towards the ultimate goal of a Changing Place facility.

A Changing Place facility for many venues is something to aspire to.

But for others, it could and should be a reality and as a Space to Change Champion I will always be encouraging them to aim for a Changing Places so they can properly accommodate every member of our community.

In the meantime I hope the short term gains that Space to Change makes for the Firefly Community will lead to long term changes in both attitudes and facilities for people with additional needs.

However there are several places we love to go in the North East.

Where staff are friendly and accommodating, and they have adequate changing facilities. So I thought I’d share.

Seven Stories 

A story book haven.

With interactive exhibitions, story time and dress up in the attic, some sort of making activity downstairs, a bookshop and cafe, seven stories is a lovely place to visit.

It can get very busy though especially with only one lift.

We tend to go for opening time or much later on.

Lately, I’ve noticed “relaxed” events taking place for young people with LD or autism.

The Discovery Museum 

I’ll admit it, i love museums.

They are so much more interactive nowadays you get to touch stuff! 🙂

The bonus of visiting this museum is that there is a huge family toilet. Let’s all wee together! Complete with changing table. I actually squealed when I saw it.

The Alnwick Garden

I’m not sure that there is anything better in life than the Alnwick garden with family on a sunny day.

Super soakers, tree houses, activities for children, and an amazing garden to explore.

I felt disappointed that I couldn’t find anywhere to change Nate and had a bit of a disaster on the floor of our WAV.

I have since found out there is a large changing room with bed near the gift shop.

This will make everything much easier and less stressful when we visit this year.

A typical family day out might include a farm.

However I have to find one in the north east with some sort of changing table.

This means a short visit and crossed fingers.

We love the beach, especially the Northumberland coast, but I don’t know of anywhere that has a changing table.

I’d love it if anyone could point me in the direction of one especially around Seahouses or Bamburgh.

While the Centre for Life, the Great North Museum and Beamish Museum have disabled toilets and are fun to visit, a whole section of society will find visiting difficult without a long enough bench or table to change on.

We have holidayed at Center Parks Sherwood where there is a changing bench in the swimming pool changing, but no where else.

I did bring this up as an issue at the last stay.

Our last stay at Haggerston Castle involved a nightmare trying to get Nate changed for the pool as we couldn’t get the wheelchair into any changing rooms. We had to use the floor of the disabled shower which was disgusting.

Never again. Clean floors aren’t ideal either, we are talking about large children and adults here.

Getting them out of a chair and onto the floor can be painful and difficult.

That’s if there’s enough space to do so.

Part of me is quite relieved Nate doesn’t understand the indignity of changing on the floor.

But I do.

The frustrating thing is that the simple addition of a fold down changing table in disabled toilets would help immensely.

Some places have huge disabled toilets and I look at the wall thinking I’d know what I would put there.

Eventually we will be limited to visiting places who have hoists….

Campaigns such as, Firefly’s “Space to change”, are incredibly important.

I know for small businesses with tiny premises having facilities like I’ve described is high on impossible.

It will cost money.

However for many attractions and buildings it’s still a lack of awareness and understanding of the actual need preventing them doing something positive for our community.

Even our Great North Children’s Hospital has no facilities suitable to change my son which I find utterly ridiculous, although there are plans in the pipeline I hear.

We are customers too after all.

Sometimes you see it as a caring place, sometimes you see it as harsh and sometimes it feels not inclusive to all families.

Once my daughter grew to a size that baby changing tables were too small for her, our view of the world changed.

How would we take care of her toileting needs in a regular bathroom?

On the floor?

In her wheelchair?

Could we both fit into a stall with the wheelchair?

Our world became harder to navigate.

We started to keep a list of accessible places or we timed our trips where there was less chance of needing a restroom.

Or worse, we either had to leave her home with someone or we all stayed home.

Life with a loved one with special needs is isolating, but now we found ourselves even more isolated.

This is not a topic that anyone wants to talk or think about.

Families with loved ones who need special changing facilities are not out there making this need known.

Our toileting habits are private and it’s not a conversation to bring up “just because”.

I used to think that a disabled stall took care of things, but as I personally found out, that is just the beginning of making our communities accessible for all.

As our children grow older, we want them to live their life with dignity.

That includes their toileting needs.

Families would love to include all their family members in their outings, but sometimes the lack of proper facilities limits those times.

Even our local children’s hospital lacks such facilities but the examination table has been offered many times before we leave our appointment.

Businesses are missing a huge client segment when they exclude families with this type of special need.

If one shopping mall offered a changing table in a family restroom and others didn’t, that mall would be the hangout for my family.

Our world has become more accessible and easier to navigate with wheelchairs, but there is still one big reason many families stay home.

It’s time to remove this barrier too.

Just before Christmas I emailed a local shopping centre to ask them to provide Space to Change.

The Centre Manager asked to me call in – it was a great visit – not only because Karen Marshall, the Centre Manager of Bow Street Mall in Lisburn, Northern Ireland was keen to get involved, but also, she wanted to help me get information out about the campaign to all the shopping centres in Northern Ireland through the NI Regional of Shopping Centres. ​

So far, the response has been great and, just last week, I received an email inviting me to visit a shopping centre in Antrim (Northern Ireland), Castle Mall.

Yesterday, I set out on a very cold and snowy day along the M2 motorway to meet Theresa Murray, Centre Manager.

Theresa showed me the shopping centre’s existing facilities, which were already pretty amazing for families.

They included two changing areas, a breast feeding chair, a cubicle with an adult and toddler toilet.

Theresa explained that they would like to extend an existing bench in order to receive an Orange Space to Change Award.

I explained that it would be better for the bench to be around waist height for ease of transfer in comparison to the above waist height that baby changing units are often placed at.

We talked about privacy, hygiene and space being the key components of a good Space to Change venue coupled with understanding from venue staff.

Castle Mall is located in the centre of Antrim Mall and I am sure that having a Space to Change award will encourage many families to visit the shopping centre to use the facilities which will also be a boost to stores located in Castle Mall.

I’m looking forward to receiving a call or email from Theresa so I can visit again, this time to present them with their Orange Award.

So I’ve sent just one email that resulted in 6 shopping centres in Northern Ireland currently making changes to receive a Space to Change Award.

My goal is that every shopping centre in Northern Ireland will provide Space to Change.

If you’d like to get involved why not become a Space to Change Champion just like me.

All you need to do is ask just one question: ‘Could your business provide Space to Change?’

It could make a real difference for your family and others in your area.

If you have any questions get in touch via the Contact Form.

For up-to-date campaign news click here.

We wouldn’t choose to lie ourselves on the floors of toilets.

Or, allow our toddler to eat a bit of food he drops there.

But, there seems to be very little drive to provide sanitary changing facilities for children and adults who, like May, will need assistance in changing their diapers for the rest of their lives.

Sometimes we are pleased to learn that there is a bigger disabled toilet available.

However, often the disabled toilet is even worse.

You’ve done it yourself—opened up the door to the disabled toilet and the force of the smell of urine and the pools of yellow piss and wet toilet paper drive you away.

What are we meant to do in this situation?

Should we lay May down in urine or leave her in her soiled diaper?

Firefly have joined forces with bloggers and campaigners across the globe to draw attention to this issue.

In a recent survey we did of almost 2,000 people, Firefly gathered evidence to prove what most of us parents of disabled children already know: facilities are substandard and unhygienic.

But, things are changing.

Because of our campaign and the pressure of parents, organisations are changing.

On the Space to Change part of our web site can see – and add to – our gallery of facilities that are upgrading their toilets to meet the needs of everyone.

You may also wish to check out the Changing Places web site if you live in the UK.

They campaign for accessible toilets and also provide a list of places that have appropriate facilities if you are travelling with someone who requires one.

These facilities should be available everywhere.

Everyone should have access to clean, accessible toilets.

You wouldn’t lie down in urine.

May shouldn’t have to experience that indignity either.

You can also find Stacie at the Mama Lewis Facebook page.

I was just one frustrated mama trying push my daughter’s wheelchair with one hand and a massive shopping trolley with the other.

May has severe disabilities, both cognitive and physical—but she always loved our weekly food shop.

I don’t know if it was the colours, sounds or smells but it seemed to engage her.

Up until about a year ago that is, and then it all went wrong.

The problem was the shopping trolley.

Up until that point, she fit into one of those shopping trolleys with the baby cradle seats.

Yes, her legs hung off it, but, she was very small for her age and the harness straps still secured her.

The vibrations of the trolley calmed her and, after we shopped, we’d wheel her around the bumpy car park encouraged by her squeals and giggles.

And, then she was too big to fit in those seats.

Shopping was no longer a joy but a real chore.

May hated it.

It won’t surprise you to learn that we still needed to eat.

We ordered more and more of our food shops online.

However, nothing compares to actually picking out the food yourself.

Plus, we didn’t want to be cut from this part of our lives, a normal activity that is shared by all families.

Disability can be very isolating — did I want our family to be even more cut off from everyday life?

So, I wrote to our local supermarket and asked if they’d consider purchasing a disabled trolley for May.

After all, the end result would be us spending more money with them and the cost of the trolley was less than our weekly shop.

They refused.

And, that was the start of the campaign.

Their response seemed completely counter-intuitive to me so, using what limited resources I had—my blog and my Facebook friends— I wrote a post that went viral.

I don’t have any great campaigning skills honed over time.

I don’t have influence in high places.

I don’t know the first thing about getting the word out.

I just spelled out how insane it seemed to me that a supermarket didn’t want me to spend money in their shop and people agreed.

You don’t have to be the parent of a disabled child to be angered by the corporate and public institutions that have such an influence over children’s lives.

But, when it is pointed out that a family cannot do something as simple as their weekly food shop, that seems like insanity.

Or, as in the Space to Change campaign, when it is pointed out that disabled children have to be laid down on the floors of toilets to be changed when they are out and about – everyone feels repulsed.

Families who don’t have disabled children may not realise how dire these situations are, but when they are made aware, they stand in solidarity with us.

These are the kind of things we can change.

And, I’m proud to be part of Firefly to raise these issues together.

I only had my blog and a handful of Facebook friends, but here we can come together and make a difference on a larger scale.

I won’t have to ask, as I did:

“Okay, so you will try to find something for May, but what of the other 800,000 families across Britain who have a child with disability?

What about them?”

Because here, those families will be represented.

Together we are stronger and our campaigns will be stronger.

You can find Stacie at the Mama Lewis Facebook page.