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.

Draft of BS 8300 -2 available for comment

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British standards are helping businesses thrive. Some of them define access for disabled people outside and inside public buildings.

What is a British Standard?

Standards define best practice in many different areas. They’re put together by groups of experts and come in a number of different kinds, from a set of definitions to a series of strict rules. 

… Standards are not the same thing as government regulations, but they’re often used in legislation to provide the technical detail.

(BSI, 2017)

Standard BS 8300 defines access requirements from ‘set down points’ in car parks to the distance to the toilet or width of lifts. There is a section about toilet access, dimensions, fixtures, fittings etc which is best practice. 
A new draft for BS 8300 is available to read and comment on. There are two parts – the toilet section is on 8300-2.

Link to draft BS 8300-1 and BS 8300-2 (enter 8300 in the search). 

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.

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.

 

 

 

 

 

 

Unable to stand up from the toilet?

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Our topic for this month looks at what people do if they can not stand up from a toilet (sitting to standing) – yet may be able to walk or get in and out of a modern powered wheelchair, unaided. How do people manage inside and outside their home?

We will be adding links below to our guest bloggers and hearing about this dilemma which affects hundreds of thousands of people in the UK.

Building Robots

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More to the point – what has it got to do with accessible toilets?

Well, we need to understand the complexity of normal body movement and posture – to learn about what can go wrong.

Only then can we see why so many people might not be able to use even the best of accessible toilets outside their home, such as Changing Places.

Human movement is amazing – when it works.

Because humans have a complex body to replicate, even the best robotic designers find it a major challenge to reproduce our abilities.

 

In a very simple form, humans need:

  • A solid framework to attach muscles to (skeleton of the right shape and material)
  • Muscles, tendons, connective tissues (allowing us to push, pull, bend, rotate etc)
  • Nerves and brain function to co-ordinate / activate muscles (for tone, balance etc)
  • Feedback and fine tuning network 
  • Fuel to ‘use up’ when performing the actions (nutrients, oxygen and a range of chemical exchanges to make electrical impulses for example).

Can you imagine how a problem with just one element of the above might prevent people form being able to remove clothing, sit on a toilet, clean themselves, stand up again etc.

Standing up from the toilet

From the muscles in your toes right through to the muscles in your head and neck (and all the electrical and chemical activity between your brain/spine/muscle) that’s a lot of things that need to be functioning well to go from a sitting to standing position.

So what type of impairments might someone have that could cause difficulty or an inability to stand up from a regular toilet?

The key problem areas are medical conditions which affect balance, muscle strength and co-ordination.

  1. Cancer (weakness, balance, thinking – varied effects on the body depending on severity/location)
  2. Stroke (balance and muscle weakness)
  3. Cerebral Palsy (affecting movement and co-ordination)
  4. Lower limb amputation(s) (balance, movement range)
  5. Spina Bifida (nerve damage with varying affects)
  6. Spinal Cord Injury (nerve damage with varying affects)
  7. Fibromyalgia (chronic pain condition)
  8. Osteoporosis (can cause limbs to twist, pain, joint movement problems)
  9. Chronic Fatigue conditions
  10. Chronic Arthritis and Rheumatoid Arthritis (range of movement, deformity, pain, balance)
  11. Multiple Sclerosis (can affect strength, balance, memory, thinking, vision)
  12. Neuromuscular Disease (hundreds of different types and sub-types causing muscle weakness  e.g. Muscular Dystrophy, Motor Neurone disease, Spinal Muscular Atrophy, Guillain-Barre Syndrome, Polymyositis)
  13. Weakness caused by old age
  14. Brain disorders
  15. Medications (medication to lower cholesterol can cause limb weakness for example)
  16. Parkinson disorders (stiffness, balance, movement, thinking, co-ordination, fatigue)
  17. Leg trauma (fractures, sprains, strains)
  18. Spinal degeneration, abscess or tumour

 

Solutions at home

riserSome people manage at home by have a toilet seat riser – making a standard toilet seat 4-5 inches higher. Riser frames and other types are also available to provide a fixed height.

All wheelchair accessible toilets in the UK must be able to take the addition of a raised toilet seat (but are almost never provided probably because if you have that level of impairment you’re unlikely to be able to fit one without help).

Many people still find these too low or it leaves them dangerously high with their legs dangling in the air, unable to touch the floor for balance whilst seated.  These people require the use of a toilet seat or toilet pan that can be electronically raised and lowered to suit their requirements.

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Above, Aerolet vertical and tilt from Clos-o-Mat [Source: Clos-o-Mat.com]

Often people ‘drop down’ onto a lower toilet (and to be able to sit with feet on the floor for balance) then raise the toilet very high, so they can slide down onto their feet, to get off. Changing Places and ‘wheelchair accessible’ toilets do not provide a removable raised toilet seat nor height adjustable toilets as part of their standard of provision.

People who are unable to stand at all, or push up with their arms, will use a hoist to get to and from the toilet.

No solution outside the home

There are hundreds of thousands of people who can walk (or raise their wheelchairs up to help them stand) and don’t have full time carers or assistants with them, yet can not stand up unaided from the toilet.

Clinics might provide perch stools or extra high seats in hospital waiting rooms for example, yet provide only toilets with low seat heights. Hospital staff won’t help pull you to your feet because of policies which forbid lifting/assisting in this way.  If that’s the level of support you get in a hospital – what about generally out and about?

Public venues could easily provide a raised toilet seat and staff to secure it, if they wanted to help people – but they don’t. Outside the home, if you can’t stand up from a toilet your can’t use it.

In one instance, this meant a disabled lady had to deficate into her hands in a standing position. We should be ashamed at not providing proper facilities in the UK. 

This month, we are publishing the stories of individuals who have the dilemma of not being able to use toilets outside their home – and why Changing Places are not meeting the needs of people who need height adjustable / higher toilets.