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.

Gender neutrality and accessible toilets

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Accessible_toiletSo for the last 6 months or so there has been much discussion on gender neutrality and which toilet you use.

Followed by ‘if anyone can use a toilet, what sign do we put on the door’.  Oh my goodness – do you put a man and a woman, both, half and half, something totally different …. or maybe just a picture of a toilet would be pretty sensible?

Whilst the world goes crazy trying to figure this out …. accessible toilets have been caught in the cross fire.

Our ‘unisex’ toilets don’t have any gender specific symbol

gender_wheelchair_toilet.jpgYou see, we never had any gender identity to begin with. Someone thought ‘we’ might be best represented by a genderless person, usually with no neck, sitting rigid (probably because they sat on a broom handle or something)  in an odd shaped wheelchair.

If we had gender then wouldn’t we have had this toilet sign?

 

 

We don’t think – is this representing a man, woman etc to decide whether to go in or not …. we just see the symbol, on a single occupancy room, and know that beyond the door is a toilet which is hopefully surrounded by adaptations and space to use it.

This symbol isn’t even toilet specific – it might not be a toilet behind the door it could be an ‘accessible’ anything because this is just a universal symbol for access in relation to disabled people.

Not only genderless but not representative

One of the issues is that this symbol doesn’t even represent three quarters of the people who can use an accessible toilet – anyone with a medical condition who needs the adaptions or quick toilet access.

It doesn’t represent people who have an impairment but don’t use a wheelchair. It’s also a major barrier for people who think the symbol represents disability and they don’t identify with being disabled (e.g. older people, people with IBS and mental health problems often do not define themselves as disabled and feel the toilet is for ‘others’). How do you get over that?

Do we need a totally new, universal accessible toilet symbol – and how on earth could we pick something meaningful to everyone. This has been the problem and reason why most countries stick to keeping the symbol of a wheelchair user.

Why this symbol does not make it the designated gender neutral toilet.

Because of the rise in people speaking out about needing a toilet that is gender neutral, some businesses are saying ‘ we already have a toilet just for you [points to the accessible toilet].

This is not a toilet for ‘anybody’ to use … if people don’t have an impairment then they shouldn’t be taking up a toilet with adaptations.

People looking for a gender neutral toilet don’t want to be taking up facilities that are for disabled people. It’s awkward and discriminatory, all round. People just need a toilet. One with adaptations and one without. It’s simple.

Disabled people might need quick access to the toilet because of their medical condition (and may need to go more frequently and stay longer). Every ‘other’ person (be it a parent needing baby changing or a transgender person etc) is taking away the accessibility feature of ‘availability’ every time they use it.

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I sincerely hope that we don’t start seeing this sort of thing become the norm. A sign to represent a gender neutral toilet – attached to what used to be an accessible toilet only for disabled people. I am hearing that this is starting to happen though and it’s worrying.

This will cause so much distress to disabled people who need quick toilet access but may now have to wait because the toilet has been opened up to anybody – all because of a sign.

 

 

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.

 

 

 

 

 

 

The future of public accessible toilets

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Further improvements are needed if we really want to make ‘away from home’ toilets truly usable for all disabled people. 

The best we have in the UK are those in new buildings which have followed guidance (Approved Document M) on meeting building regulations for access/features etc.

Most places provide single room, wheelchair accessible toilets to the UK wide specified design. A small percentage also provide Changing Places toilets (which take usability a step further by providing a high/low adjustable changing bench, hoist, toilet, sink and larger space). Changing Places are encouraged but not required in buildings. 

However, I feel we need to aim higher – because even these toilets aren’t always usable by a large number of people. It’s not just a case of whether someone can urinate or deficate – it’s about comfort for different body shapes, it’s about safety, dignity and hygiene. All these support people’s physical and mental health.

What might the future look like?

Changes in the law and building regulations.

  • Improved British Standards which would feed into
  • improved design within building regulations, for new buildings (e.g. more space)

Most importantly:

  • New laws on sanitation and equality for public toilets (both around access for disabled people and access for many other users).
  • Laws that make buildings older than 2004 upgrade their toilet facilities to the current specifications to meet duties under the Equality Act (2010) around disability.

*Currently buildings only have to provide disabled access to the level that was specified in the building regulation at the time of the build. Therefore, older buildings will not have the same level of access required today or may have no access at all.

Clear signage

There are so many different symbols, signs and words – which can be confusing for people looking for a toilet. A clear system of symbols would be helpful.

Usage

Promote the proper use of accessible toilets – many people need the facilities but don’t go in because of the words ‘disabled toilet’ or a picture of a person with specific, visual, impairment (e.g. wheelchair symbol/person with a stick). We need more public awareness that toilet like these are for anyone who needs the more specialised facilities inside.

Clearly stating that baby changing should be in an accessible parent/child location would make them more easily available to those with urgency needs.

Use of technology / equipment provision to open up accessibility to more people

Significantly high numbers of people need more than just a standard toilet, shelf and sink to meet their hygiene/toilet needs.

  1. Automatic washing and drying toilets

There are hundreds of thousands of people that are unable to clean themselves easily, or where it causes them great pain or puts them at risk of falls.

  • People with upper body limb loss
  • People with muscle weakness or paralysis
  • People with back problems who can not bend or twist.
  • People with severe arthritis 
  • People with obesity
  • People with dexterity/grip difficulties
  • People with balance and coordination difficulties.
  • People with bladder/bowel disorders/ incontinence
  • People with shortened arms
  • Disabled women particularly during menstruation.

2. Toilets which can be adjusted in height

These are essential for wheelchair users where modern chairs come in a range of heights (and people generally need to be at the same height to manually transfer from chair to toilet etc). Also, people with muscle weakness, neurological impairments or those who have difficulty moving their joints may not be able to stand up from the toilet unless it can be raised up to a height which suits them.

Variable height toilets also suit many lower limb amputees and people with short legs. Adjustability is key to prevent falls and enable people to sit/stand safely and more easily.

3. Sinks which can be adjusted in height

These facilities are only ‘desirable’ and not necessary within current guidance.

Safety

Toilets do not always have none-slip floors or alarm cords. Shouldn’t these be standard in every accessible/adapted toilet?

Space

Did you know that 82% of powered wheelchairs for sale will not fit into the transfer space inside an ‘accessible’ toilet and their is not enough room for assistance (or ambulance staff to get in to help if you fall)?

Increased number of toilets

Large venues like a shopping centre or stadium may have several visitors who need highly adapted toilets – providing one Changing Places is not enough.

What about the cost?

When someone pays for a new building – an office block, hospital, cinema/shopping mall, airport, train station … there is never a question of ‘do we need to put any toilets in the building – because we might not be able to afford it’. It is a ‘given’ that for public health, toilets must be provided. So if a place is going to provide toilets – they need to be usable by everyone (or they are as good as no provision). 

Of course, accessible toilets may have additional costs to ensure the space, technology, maintenance, security etc of the above. Those with an adult changing bench and shower need even more space.

Well, how much do you value disabled people as part of your community or workforce? How much do you want their custom (and their friends/carers/family etc)? How do you put a price on doing the right thing and enabling people to leave their homes and participate in life? What about complying with the Equality Act regarding Disability Discrimination?

Let’s be blunt – how much money are you making in your business – because most of the technology and space adaptations could be done for around £10,000 – £15,000 for the full works and is very affordable.

In my own home I have space, a ceiling hoist and a height adjustable toilet that also washes and dries – for around £5000. 

 

 

 

 

 

 

No toilet = No inclusion

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A simple message for International Day of Disabled People.

I’ll say it again and again and again until the day I die.

How are we (disabled people) supposed to be included and have opportunities to do the regular stuff (work, education, leisure, travel, family life) and stay healthy if we can’t go out because there are no usable toilets we can access.

No toilet = no inclusion = a message ‘we don’t give a &*£@’.

We need things to change NOW please.

Yours Sincerely, a person who can rarely find a usable toilet.


 

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This toilet needs your help

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What if toilets had feelings?

Toilets need your help, today.

Today we bring you a toilet and a sink which have not been treated equally like the other toilets.

Left neglected and abandoned by their owners. No toilet should have to be this way.

They have been incapacitated by the lack of care and maintenance given to the ‘regular’ toilets and if they could ask for your help – they would. They are crying out in desperation.

All they want to do is provide a safe, hygienic place to go to the toilet. A place of comfort and dignity. Many will see only pain, tears and distress. Wrong fittings, missing support rails, cramped spaces … the list is long. All they can do is watch helplessly.

Today a frail elderly man fell because there was no support rail – and no emergency cord to get help.  I felt responsible.

Yesterday a severely disabled little boy had to be changed on the floor, right next to me and the bin. He was too heavy for the baby changing table.  I kept willing him to try not to wave his arms around and touch me because of all the germs. Of course he couldn’t help it. My heart was breaking. I wanted to help. There was nothing I could do. My room didn’t have anything better to offer.

[Anonymous Toilet in Kent, UK]

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People stay at home more where they have fully accessible bathrooms – leaving toilets like these isolated and lonely.


We can change things

Act now and together we can change things. You can do something to help toilets like this.

Customers – tell people what is wrong. It costs you nothing and provides businesses with an opportunity to put things right.

Managers and architects –  offer hope to these poor toilets.  No toilet should have to suffer this way.

Just £67 could buy this toilet room a new tap or fix the existing one.  £100 could enabling local people to fix the flush and understand why it needs to be reachable from the space beside the toilet.

 

 

You could use ‘Euan’s Guide’ cards to remind people not to tie up the emergency cord and take away help from people who might desperately need it.

[We took the opportunity to provide one for the ‘accessible’ toilet at the Fairway pub, Ickenham, Middlesex featured in our video]

Save a life

You could save a life and help toilets provide a safer, cleaner and more dignified experience for their users.

Thank You.


World Toilet Day 2015

World Toilet Day is THE day for action. It is the day to raise awareness about all the people who do not have access to a toilet, and the urgent need to end the sanitation crisis. And it is the day to stand up (or sit down or squat if you prefer) to do something about it.