When surgery is the only option.

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Every day, disabled women are choosing surgery because there are no usable toilets outside their home.

Sometimes it's an ostomy bag for poo or more frequently a supra pubic catheter.
A catheter allows urine to drain from the bladder [through a hole in the skin] into a
bag or through a valve into a bottle/toilet. It's a big life changing decision.

Getting surgery for a catheter is the most talked about topic within women's forums and social media groups.

Read above one woman's experience.

The reason is not often for medical purposes – but simply because toilets are not accessible / available. They don't have the right amount of space or equipment to be usable. Sometimes they aren't provided at all or are padlocked. If you need a hoist then you only have a choice of around 1000 toilets – across the whole of the UK or Northern Ireland. There may be none in the county you live.

Catheters can cause regular infections and several other medical problems – yet bring an element of liberation and the ability to leave the house. They don't remove the need to manage menstruation hygiene though and many women also choose contraceptives or surgery to control this (oral contraceptives pose a high risk for blood clots in women who aren't active) – because they can't get on the toilet.

Disabled women experience the most discrimination when it comes to using toilets. They take the most life changing health risks. This has to change.

Have you had surgery because of no usable toilets? Tell us in the comments below.

Helpful or not – petitions

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There are over 80 petitions on Change.org calling for signatures to back calls to governments and businesses for accessible toilets. Most are by individuals calling particularly for Changing Places toilets.

Are petitions helpful?

Psychologically petitions and demonstrations by disabled people and carers are useful – providing the 'I feel I am doing something rather than nothing'. People who sign genuinely want to say 'this needs to change'. However, the reality is that petitions rarely achieve results.

No amount of signatures is going to change the law or monitor adherence to building regulations. In the UK, the government have heard, via parliamentary debates, how we need accessible toilets. They end with empty promises.

As we speak the draft of revised access standards has been drawn up – setting British standards for what could be used in buildings which last over 50 years. They don't include any change to toilet provision. They are based on the dimensions of wheelchairs, for example, from 20 years ago. Petitions won't impact these.

Dilution of support

Petitions aim for x number of signatures …. people might sign one or two but 80? If campaigns were centralised into one petition there could be thousands of supporters rather than a few hundred.

Change in strategy

The movement to ensure toilets for all is disjointed. Often it's based on promoting the needs of children rather than the needs of disabled people of all ages. People with obesity, dementia and autism are often totally ignored. Many campaigns are based on the need for hoists and changing benches – yet we still have toilets being built that are supposed to follow strict building regulations, but don't for 'independent' disabled people. There are failings at every level. Equality laws do nothing to persuade businesses that disabled people need accessible toilets.

What can we do to actually make a difference?

  • Share a petition rather than recreate one for yourself
  • Look out for opportunities to comment on building regulation guidance, local access consultations, health consultations etc.
  • At every opportunity provide feedback about toilet access. Use social media, review websites, council feedback forms, patient feedback cards at hospitals etc.
  • Use formal complaints procedures.
  • Write to your MP
  • Provide witness statements for parliamentary debates

Sounds like a lot of effort? That's why it's easier to sign a petition and have our social guilt relieved – we've done all we can, right? Now everything will be ok?

No it won't – but deep down you know that.

Train travel and toilets

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This week we heard about Anne Wafula Strike in the news – not being able to access the toilet on a long train journey.

The fear of not finding a usable toilet (and risk urinating in your underwear or damaging your bladder and kidneys) is very real. It leaves disabled people choosing the more dignified option – to not make any long journeys by train or car. This leads to major life restrictions around work, health care, leisure and socialising or seeing family.

Until 6 years ago, I had never been on a train. I then had to get into London for specialist hospital services so we started using trains. With my husband, we carefully choose our stations – they have to be 

  1. staffed – to set up ramps to get on and off . (Not all stations have staff present.)
  2. Step free access to the platform. (Some stations have no access to platforms or only access to some platforms in one direction).

It is here we bring into the equation – where will I be able to use the loo along the way.

Where are the usable toilets?

Our main route has been from Tonbridge to London Bridge and Maidstone to Victoria. From the moment I last use the loo at home, the clock starts ticking. I won’t drink anything that day to reduce the need for the loo.

Around an hour has passed and I’m at the station. The toilet door opens straight onto the platform – so my husband who lifts me out of my chair to/from the loo will have to slink out whilst I use it (without exposing me to people on the platform). He will then have to loiter and listen out for me to call him back in. He will get some funny looks – but that’s ‘normal’ for us. It’s not a private affair. 

There is no hoist – so he will have to lift/drag me to the seat. On the plus side it’s clean and has all 3 of the standard set of support rails to cling on to. 

I can’t travel by train to London with my personal assistants as they can only use a hoist to lift me and there are no rail stations with hoist equipped toilets on my route or at my destination. 

On the train

On the train, I need to get assistance into the accessible carriage. This is where the accessible toilet is located. However, on the way home we are sometimes just put in the doorway area because not all trains have accessible carriages or are too full at rush hour. They have no access to the toilets. Staff just want to get people on trains or are they see the accessible coach is a long way away – so they try to board you into the nearest coach with no wheelchair space. 


I can’t use the toilets on trains because my small powerchair won’t fit and there is no space for my husband to lift me. They don’t have hoists. You can see here that if my chair was next to the loo – my husband would not fit in at all. Alas I haven’t mastered levitation.

I often see they are out of order. If I needed the loo I’d have to get staff to cancel the ramp at my destination- and make new arrangements for me to get off at another station –  and back on another train after using the loo. As I’ve just said, stations might be no go areas because they are not step free or staffed.

If it is possible to get off at another station, what if the toilet on that station isn’t usable? Not every toilet has the ‘standard’ space, suppport rails etc. Take this one for example.


We were a few hours on a train for a day out at Ely. My husband had worked out we could use the toilet at the station. He’d even seen a picture on the station’s website. However, we headed straight for the loo only to find the support rail was not standard / too far away from the toilet to hold on to. I would have fallen on the floor. I had heart failure because we were in a new place with no idea where to find a toilet. 


On our way back from Ely to Kings Cross the same problem but thankfully on the left hand side (I need a right hand side rail as it’s the only way I can lean). For someone else this won’t be usable. This toilet is also higher than the recommended standard for safe and manageable transfers from a wheelchair. 

Trains and stations – will they ever be accessible?

I haven’t heard that newly refurbished stations like London Bridge or Cross Rail will have made any improvements to accessing toilets at stations across London. No toilets with larger spaces or hoists being put in. No refurbishing or auditing of current toilets to ensure all access features are present and correctly positioned or offer better privacy.  

I’ve been part of consultations on toilet provision on new trains. The designs did not involve larger spaces or better layouts for wheelchair users. 

There is never a guarantee the toilet will be in working order – but if all stations had improved, usable wheelchair accessible toilets on all platforms, we could at least get off the train at the next staffed station and be confident that I could pee into the loo and not into my knickers. 

I remember when… “it’s not far to fall”

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There was this one time when I was at work an hour and a bit away form home,  and assured my meeting room had 1 accessible loo. On arrival I saw a sign ‘out of order’ I enquired and was dismayed at having to stay there for many hours with no loo to use!

A maintenance guy came back and said oh don’t worry, it’s just that the seat wobbles as it’s broke (giving me a demo of a very wobbly, broken, seat that was totally unsafe).

Considering I have no balance at the best of times I resigned myself to the fact that I would have to cross my legs. He then said something like ‘it’s not that far to fall anyway… I’m sure it will be ok’.   Eh hmmm. Guess I’ll be wetting myself then…

 

Utopia Fair – what is World of Accessible Toilets doing?

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Earlier this year I was delighted to be invited to contribute to the Travelling Toilet Tales film – where a number of us shared our story about planning journeys around toilet requirements. At home I have the right facilities, space, design etc … but outside the home and on holiday it’s a different story.

I chose to contribute via narrating a poem about how difficult it is to go on a day out and find a toilet that is suitable – even with the basics!

Pop to the festival to find out more, listen to our contributions and chat with those attending. I can’t go in person but I will be around on Twitter and our Facebook page to chat about the weird and wonderful (and hugely varied) toilet designs and how this can impact disabled people.

The Utopia Fair will be hosting 35 representatives from contemporary utopian movements from all over the UK on stalls in the Somerset House courtyard. The Travelling Toilet Tales stall will offer the public an exciting first glimpse of a draft of our animated Toilet Tales film. Featuring stories from a range of toilet users, including truckers, disabled parents, and non-binary people, the film is an exploration into the ways in which everyday journeys are planned around the un/availability of a suitable toilet. Visitors will also get the chance to listen to the individual toilet stories in full, browse our postcards and artwork, and talk to the special guests joining us on the stall.

Next door, the Servicing Utopia project will be joined by artists who will invite visitors to create utopian toilet models. This weekend will also present the first opportunity to view the interactive digital Toilet Toolkit and short animated film produced by the Servicing Utopia team. The toolkit is aimed at architects and other design professionals to promote the accessible design of toilet spaces and will allow users to virtually ‘walk around’ toilet spaces and interact with items within the space.

 

Our newest research projects, Travelling Toilet Tales and Servicing Utopia, will both appear at the Utopia Fair in Somerset House in London this weekend (24th-26th June). The Utopia Fair will be hosting 35 representatives from contemporary utopian movements from all over the UK on stalls in the Somerset House courtyard. The Travelling Toilet Tales stall […]

via Utopia Fair – Join us this weekend (24 – 26 June)! — Around the Toilet

Launching our new campaign

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Today we launch our new campaign #BiggerIsBetter [Bigger Is Better].

We hear over and over again how much people struggle with the size of wheelchair accessible toilets.

Unfortunately, the size suggested by building regulation guidance is far too small for the types of wheelchairs and scooters that people use today.

We need to raise awareness and explain why meeting  building regulations does not mean they are meeting their legal duties to provide usable toilets under the Equality Act [Disability Discrimination]. Very few businesses are aware of this.

Wheelchair users can often not get into these toilet spaces, turn around or transfer safely. They become unusable. An unusable toilet might as well not be built.

Every toilet that gets built to this size could mean decades of  being unable to use that toilet. If nothing happens now – the future will remain bleak.

If the standards are not going to change, then the only way forward is to reach out to as many businesses and new developments as possible and encourage them to see that bigger is better.

 

We need to encourage larger spaces and where possible Space to Change or Changing Places. Without larger spaces, wheelchair and scooter users will continue to struggle to live as equal citizens in the UK.

Please join the campaign and help spread the word. Share our posters, pictures and your experiences.

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When is a Changing Place not a Changing Place?

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A somewhat heated debate has begun regarding Changing Places – toilet spaces which include a hoist and a bench for disabled people.

Partly this is due to two things:

  1. A new type of toilet called Space to Change
  2. Changing Places being built which do not meet the British Standard for space requirements.

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Space to Change

Space-to-Change-Closomat_360_360_int.png A campaign from Firefly, and supported by Clos-o-Mat, is promoting a toilet with a 7m square Space to Change (3m x 2.5m min). This space has a hoist, changing bench and many of the facilities you would find in a regular wheelchair accessible toilet.

The campaign has been going since 2014 and this minimum size and fixtures/equipment is a useful alternative for businesses who just don’t have the space for a Changing Place.

Clos-o-Mat provide more information on this section of their web-site.

They are to “bridge the gap between typical ‘Document M’ accessible toilets and the ultimate, a Changing Places facility”.

It is marketed as a ‘if you have to provide a wheelchair accessible toilet then you might as well add a bit of extra space for a bench and a hoist’.

Advantages

  • This seems very sensible as the reality is that small venues may simply not have space for a large CP toilet layout which has a minimum of 12 m square.
  • Might encourage more toilets to move from Doc M basics to Space to Change.
  • Costs may be less

Disadvantages

  • Not currently referenced in Doc M (will it be included in the future?) unlike CP toilets. CP toilets are mentioned as desirable.
  • Not included in the current British Standard like CP toilets are.
  • Hoist may be a portable hoist – which in this small space, might make it unusable for people with extra large powered wheelchairs and two carers, or moving between toilet and bench via hoist.
  • Large venues like stadiums and shopping centres/leisure complexes might drop down to this small format when they could easily accommodate a full CP toilet.
  • Should not be listed on the CP toilet map – but maybe the map should include CP and STC toilets? I personally don’t want to trawl through two separate toilet maps or lists of different ones held by two organisations to find a toilet.
  • Changing benches do not have to be height adjustable.
  • A large waste bin for pads is not specified aside the regular bin inclusion for sanitary waste and a ‘waste bin’ found in regular toilets.

It is important to note that neither a CP or STC toilet are required within the law for building regulations.

Further debate on the size of installation…

People are spotting toilets included on the CP toilet map which are smaller than the British Standard. It is worth noting that in the early days (prior to June 2013) of CP toilets, the standard was 7 m square – and are included on the map. Many people are getting these confused with ‘Space to Change’ toilets going on the map.

A more recent (2014) installation at Emirates Stadium is said to be smaller than the CP standard yet heavily promoted as a full CP toilet.  From the photos it does look a lot smaller than standard.

For other people, branding is a big issue – some toilets using the CP symbol where no hoist exists and other CP toilets calling them other things like ‘Adult Changing Room’ and ‘High Dependency Unit’.

I have been in small changing places fitted before 2013 – and space was an issue. However, often the layout is poor – space is more about location of equipment not just physical room size. My bathroom at home is fairly small yet I still have room to hoist with carers.

What we found out

So, the debate continues, meanwhile the new British Standards are being looked at and we had the opportunity to submit thoughts and recommendations from our readers and project contributors.

There was a clear need for a range of toilet spaces in size and equipment for small buildings. Also that in larger buildings such as cinemas, stadiums, shopping areas, hospitals, parks/tourist venues and large work places – then even a full CP toilet isn’t meeting people’s needs and that the Standard needs to be raised to support the large number of people who need adjustable toilet risers and washing/drying bidets.