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.

All about support / grab rails

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Taken from our guide (see links page) we look at the importance of support rails in accessible toilets. AD M is approved document M of the U.K. Building Regulations.

It is possible to have many layouts to allow for the provided dimensions and fixture configurations in AD M.
 

The general layout of a unisex accessible toilet is to have horizontal grab rails to both the left and right side of the toilet [AD M: S 5.8].

Heights, lengths and distance from the toilet / sink / mirror etc must be precise as described in AD M.
Vertical rails must also be provided in specific places.

How many rails do people need?

74% of disabled/older people use handrails. They can be used to pull/push up with or simply to lean on for stability.

41% of powered wheelchair users prefer the right side, 30% the left and the rest had no preference in a 2005 study.

Some people need a rail both sides and on the back wall.  The rails needs to be the right height, length, distance from the toilet/sink, thickness and colour.

An accessible toilet must  have at least 5 support rails with additional ones if the toilet is located some distance from the wall. 


Barriers introduced

As can be seen above, support rails can infringe on the transfer space and cause problems for some wheelchair users.

Solutions

  1. Assess your toilet – do they have the full complement of support rails and are they in the right place and the right length / height? 
  2. Mix it up – the standard suggests that if you provide more than one unisex toilet, a choice of layouts for left and right hand transfer should be provided. 
  3. The smaller the space, the more grab rails will get in the way for powered wheelchair users and carers – re-consider your design space. 
  4. Provide Changing Places toilets in addition to existing accessible toilets. The larger spaces to the left and right of a central toilet offer more transfer option angles for people who use powered wheelchairs, large walkers/ frames, or need carers to assist them.

Time for a Change?

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The campaign for toilets with an adult bench, hoist and space for 2 carers resulted in the Changing Places Consortium being formed 10 years ago.

Whilst significant campaigning (largely by individuals with varying styles and mostly by parents) has resulted in the provision of over 850 of these toilets, we wondered whether it’s time for a change? 

Campaign success?

There is no single campaign or campaign  strategy for changing places – individuals can do whatever they want. This makes the campaigns disjointed and dilutes or replicates efforts. You see this regularly across the multitude of social media accounts/Facebook Pages and private blogs identifying themselves as campaigners using the CP symbol. Whilst Aveso and the Consortium generate information sheets and ‘Selfie Kits’ etc … there is a blurring of who or what is the ‘official’ approach. 

Protecting young people

Take the recent episode of parents who collected and posted pictures on the Internet of children (and other people’s children and young adults) on the toilet floor, face showing and wearing incontinence pads. Young people unable to consent to this undignified use of their image. If a school or care business did this it would be a serious child protection and human rights issue. However, when I raised this as a concern the Consortium said parent campaigners are not affiliated with them and can do as they wish. This didn’t stop their official social media accounts from sharing the images.  Mixed messages ensued across multiple Internet forums. The rights of the child were lost amidst the the cause, angering many disabled people.

Would not the responsible approach be to support campaigners with training in methods and ideas which protect the privacy and dignity of children? Just because dignity was lost in being on the floor doesn’t mean the indignity should be extended by their image being shared.  Is this the sort of campaign that can only achieve success by using increasingly shocking images? Thankfully many people did indeed use their creativity and there has been a reduction in the use of children as dignity martyrs – and so individual efforts continue and the campaign actively promotes them. 

Pen v. sword?

Individuals can approach companies in any way they want ranging from polite letters and personal conversations to social media harassment. 

It is likely that as much harm as good has been done with these tactics which has divided campaigners for toilet equality.  How can you have a meaningful, positive conversation when the previous contact they had with a campaigner was focusesd on personal anger, emotion and frustration. 

It’s easy to get angry when you have struggled that day in a cramped toilet and are gathering up your evidence to make a complaint or have ‘that’ conversation. You want to throw the book at them, yell at them. You want to drag them into the toilet and make them see what you have to go through. You want them to empathise and make things right – but all you get is a ‘sorry you were unconvenienced’ letter to fuel the next stage of complaint. 

It’s hard not to let personal emotions damage your chances of negotiating an agreement to provide a toilet you and thousands of others can use. However, we have to remain polite, persistent, factual and professional. Unfortunately not all campaigners do – and that’s a big problem.

Time to rename and rebrand?

Many have kept their distance or tried to move things on locally. There have been issues with Changing Places being built that fall short of the recommended guidelines of 12 sq metres. That said it is a guideline. Some felt a smaller room was acceptable and out sprang the Space to Change campaign with its own logo. Then things became problematic with determining which ones were listed on the CP toilet map.

Recently a local campaign for a new branding of ‘Hoist Assisted Toilets’ has gathered momentum. In fact, one of the problems with the CP toilet was that they were very focused on the needs of people who used incontinence pads. This alienated (in name and focus) people who were continent but needed a hoist or those who needed a bit more space or other equipment. People didn’t like asking for a Changing Place due to the remaining stigma of incontinence. 


This has led to CP toilets being called other names including ‘high dependency unit’, ‘Space to Change’, ‘Adult Changing Room’ etc. It’s confusing and has resulted in staff and visitors talking cross purposes and toilets not being found.  If there was a single campaign with good leadership, one name, one symbol and one strategy then we might have more of these toilets.

The future of toilets 

The result of the above could indicate that change is needed in many areas if we are to benefit from more Changing Places toilets in the UK.

Archived: 2010 journey to Holland

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Archived from 2010.

Journey: Harwich to Hook of Holland + Overnight stay at Premier Inn

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Premier Inn is situated at the port next to Lidle and adjoining a Brewers Fayre. One night cost £61 at the time we booked in January. We had to stay overnight because it meant getting to the ferry 45 mins before we sailed at about 9 am. Much less than 8 hours sleep and my body falls apart. We had a roll in shower, plenty of space and the sink was at a good height to wash my hair in.  Lacking in personality like all of these sorts of rooms – it did the job for the night and we were relatively comfy with little noise outside.

Stena Line – to Hook of Holland on board Britannica (older ferry).

This slightly older ship was refurbished in 2007 and was fantastic.

We selected an accessible cabin for one person as a space to chill out and appeared to be the only wheelchair user on the boat getting a large cabin with tables for 1-2 disabled people.

You can see a 360 photo of  cabins on their web site.

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The only difficulty for me was that the sink is quite high and basin was  inset a way from the edge as opposed to the usual type of sinks in say a Premier Inn.  It was airy, clean and the beds were firm with a soft mattress topper which even I found comfy having scoliosis.

IMG_1002.jpg On board we had free wifi for the duration available on the decks which suited me and my iPhone!

Top Class Service

We were met just outside the lifts by a steward who said they had a reserved area for wheelchair users on board, away from the crowds of people and closely packed tables. So, just to the side of everyone else were 3 tables by a window, with a rope barrier and larger access space clearly signed ‘reserved for our wheelchair accessible guests’ which made me giggle as perhaps the intention got lost in translation now everything was Dutch/English bilingual.  Either way, our steward said just to ask if anyone took our spot and he would ‘hoof them out’.  Sounds good. Not a single person or child tripped over us in our lovely corner and it was away from the hustle and bustle which was lovely. Some people might see it as segregation but there are times and situations you really need your own spot – not just wheelchair users but other people with impairments too. Our steward watched out spot as we went to get some lunch, went to get our cutlery whist my husband carried the tray and basically got us anything we needed.  We felt like royalty,

Our meal was lovely and the journey didn’t last long at all. Right from pulling up in the car, to boarding near the lift through our journey and off the other side it was very good. The ship was clean and tidy and not many people onboard in general. 10/10.

All about the Hollandica Superferry

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This was a trip in 2010 and I have re published for archiving one this project.

Journey: Hook of Holland to Harwich via Stena Lines – Hollandica Superferry

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This ferry was launched this year (April 2010) and will join another Superferry in Autumn.  These cost £375 million pounds.  Shame they didn’t spend much on thinking about the overall experience for disabled people. Granted the ship had some nice touches but compared to our first crossing, the staff support was very poor.

 

 

Cabins.

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Again, we pre booked a cabin with wheelchair access. We had our tickets printed at the car booth which they told us also acts as your room key. This was the same as our first journey.

On locating the cabin (which had us wandering the isles of cabins to work out the number system) we found the door had a small low touch pad with a slot to insert the room key card. It also had a normal handle on the door.  I believe the door was supposed to open automatically.  I say supposed, because it didn’t work.

My husband tried several times and the light flashed but nothing opened. Eventually a member of staff said we had to have a normal key to put in the door.  What use is that!  The automated door was not working and when we got in we could see why – the opening door arm was not fitted but the electronics were there. It was also kind of … orange!

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The bathroom featured a level entry (roll in) shower area with seat and lots of grab rails. The toilet had two grab rails either side and room to side transfer to one side. I’m not that fat but due to scoliosis, lean to the right side. When the grab rails come down they basically wedged me onto the toilet and are closer than what you would find in your average UK accessible toilet. The floor surface is very soft, with good grip but like the previous ferry, the sink is not suitable for hair washing and difficult to reach for me personally.

The bathroom is rather nice but the flat push panel to open the bathroom automatic door is situated above the side unit of the bed on the left of the cabin. So if you have to sleep on the right bed (which I do because of my spine) you can’t press the button from bed.  However, if you are a wheelchair user, how someone could sit on the bed, press the button, transfer into their chair and then get through the door before it closed again in about 10 seconds is beyond me anyway!  The bathroom door swings back and because it is wide, there is only a few set places your wheelchair can go or it hits you and closes again.  If you are standing in the way of the door the force would knock you off your feet – my wheelchair would rock with the force and it’s a weighty machine.  The location of the switch hasn’t really been thought through in the overall design I felt and the close mechanism is rather violent (but possibly needed to close a large heavy door).

The cabins were nice though putting these problems to the side even if they did vibrate something chronic.

Customer service.

I was a bit miffed that the free wifi was only for 3 hours and the ‘reception all over the boat’ meant one bar if you’re lucky.  We also got an incredibly poor service when purchasing food as what we wanted from the menu wasn’t actually available and my husband ended up with a microwave meal and I ended up with a chicken burger that makes McDonalds look like a 5 star restaurant.  The guy who ‘cooked’ our meal was more interested in the football on the plasma tv installed in the food court than customer service. We had no offer of help to carry the tray and no ‘quiet area’ as in my previous blog.  Too much money spent on umpteen plasma screen tvs and bars than on customer care I think.