Access Linky Oct 2017

a rusty key with #accesslinky written below

Huge apologies for the lack of linky last month!

Those pesky school holidays messed up my schedule so I decided I would wait and have a relaunch today on the 1st anniversary of the linky and to change the linky date to the (much easier to remember!) 1st of the month!

Share your accessibility stories on Access Linky. Open from 1st of the month for 3 weeks

Thank you so much to everyone for joining in last time, there was a fab variety of posts!

Round Up:

A number of the posts linked last time addressed the wider aspects of inclusion, and what that means for their families. The Long Chain picked out the Five Things I’d Change to enable greater inclusion for her family and Ordinary Hopes gives a heartfelt picture of how the environment & society impacts her son’s life in  Children Should Not be Scared to go Out.

Things are changing and businesses are beginning to show greater awareness of access issues but this can sometimes feel like tokenism as Mum on a Mission points out in her post Are Physically Disabled Children Invisible?

Little Mama Murphy shared a lovely post about How to Talk to A Disabled Child! Yes! This is all it takes!

As part of her #SEND30DayChallenge (which I am attempting to complete too… albeit VERY slowly!), Mum on a Mission highlighted 10 Things You Don’t Know about Changing Places Toilets – although many readers of this series will know some of these as Changing Places Toilets is one of my regular topics!

It was brilliant to see a number of reviews focussing on the accessibility of places and venues! Wheelescapades reviewed on of our own family favourite places Wimpole Estate – Down on the Farm. Really interesting to read someone else’s perspective on somewhere we know so well!

A Wheelie Great Adventure reviews their experiences of a family trip to the coast in Tales of Birds, A Beach and A Bomber and Life and Other Stories’ shared a fab post written by her daughter, My Day Out by Cerys Giles.  Great to hear from the next generation of access advocates!

Finally Rainbows are Too Beautiful gives some really helpful tips for those who find it a challenge to eat out with younger children and/or people with neurodivergent conditions in  Tips to Take our Autistic Kids to Dinner

Please do check in again next month to catch up with the blog posts in the round up, and bloggers I hope to see lots of you again this month and *meet* some new people too!

Linky Info:

The linky will be open for 3 weeks! Share your posts about ideas and experiences (good and bad!) around physical and/or sensory accessibility of buildings, places, spaces, products and/or activities below…. and don’t forget to check in again next month to read the round up and link up again!

Inclusive Home

Guidelines:

  1. Link up to 2 posts each month (old or new)! It would be lovely if you could add my badge (cut and paste the code in the box under the badge image above and add it into your blog post while in ‘text’ mode of your blog editor) or add a text link back to my site so that people can find the linky and read the other blog entries;
  2. Please comment on this post to introduce yourself if you’re new to the linky, and comment on some of the other linked posts to help share ideas and experiences (use the hashtag #AccessLinky in your comment)!
  3. It would also be amazing if you could share your post (using the hashtag #AccessLinky) on social media to help spread awareness of the issues around accessibility!  I’ll also try to retweet as many posts as I can!
  4. I welcome input from anyone that is affected by accessible design – users, carers, friends and family as well as designers, developers, managers and legislators (so pretty much everyone then!). I welome blogs from professionals and suppliers as well as individual bloggers as long as they keep within the spirit of idea exchange and are not sales posts for products or services.

10 things you may not know about inclusive homes

Accessible and inclusive design is my ‘thing’ and, as a housing architect, home design is also my ‘thing’ so this is a post about some things you might not know about accessible and inclusive home design!

So what is inclusive design?

The general principles of inclusive home design have been coming into legislation in some regions of England via the Lifetime Homes standards and more recently a version of the standards has been included in the building regulations (although the regs don’t say when and where they should be adhered to, so they are optional for developers unless individual planning authorities to set critera!).

What are Lifetime Homes?

“Lifetime Homes are ordinary homes designed to incorporate 16 Design Criteria that can be universally applied to new homes at minimal cost. Each design feature adds to the comfort and convenience of the home and supports the changing needs of individuals and families at different stages of life.

Lifetime Homes are all about flexibility and adaptability; they are not ‘special’, but are thoughtfully designed to create and encourage better living environments for everyone. From raising small children to coping with illness or dealing with reduced mobility in later life, Lifetime Homes make the ups and downs of daily living easier to manage.”

I believe we should all have these criteria in our minds when we are searching for a new home, or making alterations to our homes.  After all, we invest our hearts in our homes, so why wouldn’t we want to make sure they are as welcoming to all our friends and family as possible? And, as we invest our money (the biggest investment most of us will ever make!), let’s make sure we’re providing ourselves with a physical insurance policy, a house that can adapt smoothly to our future needs!

We just need the knowledge, the inspiration and the opportunities, to be able to make these choices for life long happy homes!

So to my top 10….

1. There are not enough!

Accessible homes are just not readily available.

Those who need an accessible home usually struggle to find anything suitable and many people need to adapt whatever they can find (this is practically impossible on the private rental market!).  It’s very rare to find a fully accessible property.  Even bungalows often have steps at the entrance and narrow doorways and corridors!

And even if you are to you build your own grand design, there are so very few great examples out there to inspire, that those who need accessibility features often end up feeling that it’s too clinical and people who don’t currently have access issues are just not encouraged to think inclusive, so unfortunately it’s just not at the top of the agenda.

I’d like us to change that! Let’s stop treating accessible and inclusive design as niche! I’d love to see great hints and examples of inclusive design in the magazines and the home design TV shows!

2. You don’t have to be old or disabled

….to benefit from an accessible home!

Many of us share access needs but many of us just ‘put up’ with the way things are, the way things have always been done.

Small children are only small for a limited period of time, so we don’t change our homes specifically for that period in our lives – but how much easier would it be if homes were pre-designed to be ‘wheel friendly’!?  For getting in and out with buggies, little ones crawling or bum shuffling, first steps with a baby walker, and later on perhaps bringing scooters and/or bikes through the house to the back garden?

But your house isn’t only for you to live in.  Most people want to be able to socialise, to invite friends, have people to stay.  What if you make friends with a disabled person? Could they come and visit? What if one of your close friends or relatives becomes disabled or starts to find getting around more tricky with age? Could they still come and visit, could they use the loo or stay overnight?  Without compromise or making them feel they are being too much trouble? If we have the choice, wouldn’t we want to be able to welcome all our friends and relatives (now and in the future) whatever their abilities? Why not designs homes to do just that!?

3. Ugly plastic grab rails

…are not a requirement!

Grab rails may be a necessity for some people, but they don’t have to be ugly! There are some lovely metal (and even timber!) versions around now.  Some that combine function with regular home accessories, like towel rails or shelving racks to integrate into the room design (edited to add: check out these ideas from Wheel Chic Home!).  You could even consider the design of furniture and fittings such that they’d provide a suitable stabilising surface.  A piece of cabinetry in the bathroom that would allow someone to steady themselves as they stand at the sink, or gets on and off the loo?

3. Good design principles

Like energy efficiency, access and inclusion should form the basis for good design, not an add on.  If something is integrated from the beginning it’s always going to be more economic to do, and it also means it will feel like a natural part of the whole, almost unnoticeable except to those who need it!

4. Open plan living

If the magazines and TV makeover shows are to be believed, we’re all aspiring to open plan living and wide spaces, and nothing makes wheelchair or walking frame turning circles easier than open space, and getting rid of walls and narrow corridors!

Inclusive homes most definitely can be Ideal Homes!

5. Downstairs shower room

Developer housing is full of teeny little downstairs loos and micro sized en-suite bathrooms – quantity over quality (in my opinion)! How about consolidating all the micro spaces and opting for a sensible sized downstairs shower room and sensible sized family bathroom independent of the bedrooms so they can be used by whoever needs it (and therefore accessible to disabled family members or guests!)? ……I reckon this would also be super handy for hosing down muddy children, dogs and gardeners!

6. Parking

…is important for many disabled people as public transport is not always doable.  Many disabled people need access to a car or easy access for taxi pick up and drop off.  If this is something you can integrate at your property, try to ensure there’s enough space around the car space for wheelchair access or to be able to fully open the car door to helps someone in or out – again this is beneficial for other uses (wrestling children into car seats, buggies, shopping, luggage etc!) if you don’t use a wheelchair yourself!

7. Thresholds and doorways

…can be a deal breaker when it comes to making your home visitable for disabled friends and family.  There is a sensible historic reason for front door steps.  Homes built with timber floors, are raised a certain height above the outdoor ground level, to prevent dampness and also water getting in in flash floods.  So, chances are, most older homes will have a door step (or several) and it can be a tricky problem to solve (depending on how much space you have for ramps).

If you can solve your door threshold when you are doing improvement work (or if you are building a new home!) then do it! Save yourself a potential headache in the future, and make it easier for any disabled visitors you have in the meantime!

9. It doesn’t have to be a bungalow!

Accessible homes can be detached houses, semis, terraces, flats on the ground floor or even flats on the upper level, as long as there’s step free access (i.e. ramps, level thresholds and/or a lift) and a room that can be accessed step free that could be used as a bedroom! In a house, perhaps you could double up uses – a play room, a home office (or even a living room if separate from the kitchen/dining area) that could become a guest room for a disabled visitor?

10. Future-proofing

As I mentioned above, our homes are probably the biggest single investment that we’ll ever make, so I think it’s only sensible that we think about future proofing them!  By that I mean make them sustainable in the broadest sense, invest our money sustainably so we don’t have to throw large amounts of money into them later! Think about energy efficiency, perhaps energy production, the materials that we use, but also how inclusive it is going to be!

If we design along the lines of lifetime homes principles we can make our homes become a physical insurance policy against illness or disabily in our own futures, as well as comfortable and flexible in the present!

This is a post for #SEND30DaysChallenge: Day 2: “10 things you don’t know about….”

(At this rate it’s going to take me years to complete this challenge!)

Spectrum Sunday
Keep Calm and Carry On Linking Sunday

What’s in a name?

EJ in her standing frame facing her baby brother in a bouncer

I’m a little late joining in with Mum on a Missions’ #SEND30DayChallenge but here goes…

Day 1: Meaning behind the blog name

This is a very apt theme as I’ve been intending to write a little bit about my blog name for ages!

It may be completely obvious, particularly to my regular readers, that I’d name my blog about inclusive design. Beginning our own home design/disabled adaptations journey was the inspiration for starting to write about accessible home design in the first place.

I considered various different names (when I was googling what was available!).

Things like AccessibleHouse and InclusiveDesign, but I kept coming back to InclusiveHome.  It occurs to me now (if not then – I may be post rationalising!?) that my blog is not just about our house of bricks and mortar, but as much about our home life, our family.

EJ in her standing frame facing her baby brother in a bouncerYou might then wonder – wouldn’t having an inclusive home life go without saying?

Well, actually no.

It’s really not that easy to lead an inclusive life! There are so many barriers outside your control that mess up access and natural inclusion, and even snooker your ability to try to enable inclusion.  From the shortage of inclusive activities to the challenge of accessing public transport and the lack of the most basic facilities suitable for disabled people (like toilets!).

If you check out the social model of disability (the response to the medical model), the theory is that it’s not disability that isolates and excludes, it is society’s perspective of what a person should be (and be able to be) and the physical barriers in our environment that disables people, prevents inclusion and limits independence.

Creating an environment that is inclusive for everyone, is as much relevant to our inclusive home life as our house is, and so the scope of my blog expands…..!

Accessibility Stories 07.17

a rusty key with #accesslinky written below

Thank you so much to all the linker uppers last month!

Apologies for running a bit late this month. The end of term and start of the school summer holidays have made their impact on my time to blog! I suspect many of you will be in a similar boat!?

Round Up:

Talking of holidays, last month Rainbows Are Too Beautiful shared an absolutely lovely little movie by @bobscartoons in her regular Wonderful Wednesday feature.  Family holidays can be daunting at the best of times, but when you have access and sensory considerations to make too, it can become a mission and a half!

Picture of a rusty key saying: Share your accessibility stories #AccessLinky

There were also a number of posts on inclusion last time.  Both good and bad examples!

Rainbows are Too Beautiful writes a lovely message to say Thank You Little Girls after glimpsing some natural moments of acceptance and inclusion between her little boy and his classmates at his school assembly.

Raising My Autistic Son shared a post about her son’s experiences of trying to Access After School Activities and The World of Gorgeous Grace enthuses about the contrast she’s experienced in the holistic approach to inclusion after moving to a new area in her post: This is how to do Inclusion

However The Sensory Seeker speaks of a disappointing approach to inclusion at her son’s school in Not Being Different

Disabled parking, or blue badge parking, is a topic I keep meaning to write about myself, because there still seems to be a lot of misunderstanding about why it’s needed and what impact the lack of parking can have.  The Long Chain explains just what this means for her and her family in This is A Disabled Parking Bay

And finally, my fantastic campaigner friend Lorna has decided to dabble in the world of blogging! Her first post about changing places toilets Even our Hospital Doesn’t Have a Toilet That We Can Safely Use was published in the #HPEveryBody series on HuffPost UK! Please read and sign her petition for #ChangingPlaces Toilets at the end of the post!

I hope you’ll check in again next month to catch up with the blog posts in the round up, and bloggers I hope to see lots of you again this month and *meet* some new people too!

Inclusive Home

Info on how to join in below:

Linky Info:

I’ve switched over to Inlinkz for the linky this month as I think it’s a bit more user friendly, hope you think so too!

The linky will be open for 2 weeks, please do share your posts about ideas and experiences (good and bad!) around physical and/or sensory accessibility of buildings, places, spaces, products and/or activities below….

And do check in again next month to read the round up!

Guidelines:

  1. Link up to 2 posts each month (old or new)! It would be lovely if you could add my badge (cut and paste the code in the box under the badge image above and add it into your blog post while in ‘text’ mode of your blog editor) or add a text link back to my site so that people can find the linky and read the other blog entries;
  2. Please comment on this post to introduce yourself if you’re new to the linky, and comment on some of the other linked posts to help share ideas and experiences (use the hashtag #AccessLinky in your comment)!
  3. It would also be amazing if you could share your post (using the hashtag #AccessLinky) on social media to help spread awareness of the issues around accessibility!  I’ll also try to retweet as many posts as I can!
  4. I welcome input from anyone that is affected by accessible design – users, carers, friends and family as well as designers, developers, managers and legislators (so pretty much everyone then!). I welome blogs from professionals and suppliers as well as individual bloggers as long as they keep within the spirit of idea exchange and are not sales posts for products or services.


Inclusive British Standards?

Changing Places Toilets entrance signage

The British Standard Institute’s document that deals with accessibility in buildings and the built environment (BS 8300) has been under review for some time and last month, the greatly anticipated (well by me anyway!) draft of BS 8300 for public consultation was published.

BS 8300 is a massive document with a wide ranging remit (excluding dwelling design), containing lots of essential information to enable designers, developers and service providers to take actions to enable access to our built environment for people across the full spectrum of disabilities (not just ramps and lifts – although of course they are very important!). Including this particularly welcome section about including Inclusive Design in the development process:

“An inclusive environment recognizes and accommodates differences in the way people use the built environment. It facilitates dignified, equal and intuitive use by everyone. It does not physically or socially separate, discriminate or isolate. It readily accommodates and welcomes diverse user requirements – from childhood to adulthood through to old age, across all abilities and disabilities and embracing every background, gender, sexual orientation, ethnicity and culture. It helps people to live independently and participate fully in all aspects of life.” (Clause 4, BS 8300 draft)

Changing Places Toilets entrance signageHowever (as any regular readers will know!), one of the aspects of accessibility that particularly impacts my family (and approximately 250,000 other individuals, plus their families and friends, in the UK!) is a shortage of accessible toilets with hoist and changing bench. The only description for this need currently in the BSi standards is called a Changing Places Toilet.

Therefore my primary focus so far has been on reviewing the sanitary facilities section and I’m afraid I’ve found the amendments extremely disappointing, and counter to the lovely inclusive statement above.  It still reads to me as if changing places toilets have just been added on rather than included within the standards for sanitary provision.

I’ve laid out some of my initial thoughts on the accessible toilets section in a previous post, describing why we still feel Slightly Invisible and I will publish some more of my detailed thoughts on specific clauses (including my own suggestions for improvements) soon.

I know this legislation stuff can be a bit dry (downright boring?!) and jargon filled, but it is so important!  So much of the challenge in campaigning is the drudgery of contacting individual providers, who may or may not be receptive to comments and many of whom throw back the old, ‘we’ve complied with all current legislation‘ chestnut.

In building legislation, there’s so much stuff to read, and it can be confusing even for those of us in the industry so it’s massively important that current legislation is clear, and also clearly fair (for the users and the providers).

So I thought it might help to try and explain what a BSi Standard (like BS 8300) is, and how it relates to other legislation and regulations…..

The explanation on the BSi website is:

“In essence, a standard is an agreed way of doing something” but is “designed for voluntary use”

“The point of a standard is to provide a reliable basis for people to share the same expectations about a product or service.”

The BSi standards are accepted guidelines, in some cases best practice guidelines for particular situations, products services, put together by a wide range of interested parties (in the case of buildings that is users, designers, consultants, developers, service providers etc).

They stand alongside, and support other relevant legislation, the key ones for building accessibility being the Building Regulations and the Equality Act.

Building Regulations

In England, the section that deals with accessibility is Approved Document M, Volume 2 (or Part M2 for short, Part M1 for accessibility in homes).  Scotland, Wales and NI all have their own Building Regulations documents, but all have a broadly similar approach to accessible toilet legislation as Part M (hence the pet name for the standard style of accessible toilet being the “Doc M toilet” or the fittings being called the “Doc M Pack’).

As buildings, and their contexts, vary so much (from existing buildings to newbuild, from homes to offices and sports venues, tiny to enormous, hilly sites to flat…..) the Building Regulations are set out as an “Approved” way to do things, an approved way to meet a host of other legislation affecting buildings and people and the environment etc.  You do not have to meet legislation in the way building regulations say so, if people want to, or find they can’t comply for some reason or another, there are concessions or alternative methods that may be approved on a case by case basis.  However most developments do follow the regulations if they can, as everyone knows where they are then!

There is only a small mention of Changing Places Toilets in there, which references the BS 8300 document and the Changing Places Consortium guidance.

Building regulations are only enforceable at the time of development or refurbishment, so some people argue that changing them won’t help the situation for existing buildings.

The Equality Act

The Equality Act 2010  is a more overarching legislation that covers all equality issues from race to gender, employment to access.  It does not set out specifics on how buildings should provide access, just that they shouldn’t put disabled people at a “substantial disadvantage”.

This, from the beginning of Part M of Building Regulations:

“Although the guidance in this Approved Document, if followed, tends to demonstrate compliance with Part M of the Building Regulations, this does not necessarily equate to compliance with the obligations and duties set out in the EA. This is because service providers and employers are required by the EA to make reasonable adjustment to any physical feature which might put a disabled person at a substantial disadvantage compared to a non-disabled person. In some instances this will include designing features or making reasonable adjustments to features which are outside the scope of Approved Document M. It remains for the persons undertaking building works to consider if further provision, beyond that described in Approved Document M, is appropriate.”

So although there is some wiggle room for developers and service providers in both the BSi Standards and the Building Regulations, they still play an extremely import role in setting out what is expected in buildings and venues and what would be considered a ‘reasonable adjustment’ under the Equality Act legislation.  It’s therefore crucial that they reflect fairness to all, and in a clear way.

So if any aspects of accessibility affect you or someone you know, please do  have a look at this draft document!

You can register with the BSi to view the draft and submit your own comments on the standards (until 13th August), as an individual or on behalf of an organisation, by entering BS 8300 into the search bar, here:  BS 8300 for public consultation

You can find a selection of posts by other bloggers about how the lack of Changing Places Toilets affects them here

Accessibility Stories 06.17

a rusty key with #accesslinky written below

Thank you to all those who joined the linky last month! I hope you all enjoy reading this little round up!

Round Up:

There were two fantastic posts on communication linked up last time.

I absolutely love this one by Little Mama Murphy about the training session she attended by Jo Grace about Communicating Without Words.  I had happy tears running down my face reading it. I LOVE the concept of ‘sensory being’ and ‘literary being’! It feels just right to describe the differences between my EJ & EW in that way!

Rainbows are Too Beautiful gave a shout out to the upcoming Singing Hands DVD  which also sounds fab! I did some baby and toddler singing and signing classes with both of mine when they were young.  I’ve been a bit lax with my makaton recently without the structure of the class to keep me motivated, so it would be fantastic to have a fun DVD aimed at an older audience!  Music is definitely key where it comes to engaging EJ!

Picture of a rusty key saying: Share your accessibility stories #AccessLinky

When it comes to getting around on wheels, I think there’s sometimes a misconception that ‘everywhere’s accessible these days’, but that really isn’t true, even some of the really fundamental stuff in newly refurbished buildings, as Ordinary Hopes highlights in her post Just Because Daleks Can Do Stairs

Mum on a Mission sets it out in black and white how society is forcing people to wear nappies if they want to get out and about, due to a lack of understanding and action on changing places accessible toilets (from legislators, designers, developers through to service providers) in My 8yr Old Isn’t Potty Trained and It’s Your Fault

It really seems ridiculous that some people’s outings revolve in detail around where they can go to the toilet, so Ordinary Hopes wants to say Thank You Exeter Services for acknowledging the need and acting upon it! As Ordinary Hopes says, it’s not only enabled her and her son to go out, but also to become customers and spend their money with them!

Speaking of customers, Brody Me and GDD linked up her post on Products SEND Parents REALLY want! Retailers are missing a market in other ways than just getting their customers into their shops or onto their websites, in that there’s a whole market out there for useful, comfortable, (affordable!) and well designed products for disabled children and adults! What can you add to her list?

I hope you’ll check in again next month to catch up with the blog posts in the round up, and bloggers I hope to see lots of you again this month and *meet* some new people too!

Info on how to join in below:

Linky Info:

This linky will be open for 2 weeks, please do share your posts about ideas and experiences (good and bad!) around physical and/or sensory accessibility of buildings, places, spaces, products and/or activities below….

And do check in again next month to read the round up!

Guidelines:

    1. Link up to 2 posts each month (old or new)! It would be lovely if you could add my badge (cut and paste the code in the box under the badge image below and add it into your blog post while in ‘text’ mode of your blog editor) or add a text link back to my site so that people can find the linky and read the other blog entries;
    2. Please comment on this post to introduce yourself if you’re new to the linky, and comment on some of the other linked posts to help share ideas and experiences (use the hashtag #AccessLinky in your comment)!
    3. It would also be amazing if you could share your post (using the hashtag #AccessLinky) on social media to help spread awareness of the issues around accessibility!  I’ll also try to retweet as many posts as I can!
    4. I welcome input from anyone that is affected by accessible design – users, carers, friends and family as well as designers, developers, managers and legislators (so pretty much everyone then!). I welome blogs from professionals and suppliers as well as individual bloggers as long as they keep within the spirit of idea exchange and are not sales posts for products or services.
Our Inclusive Home



Slightly Invisible

Slightly Invisible

Last week, during Carer’s Week, a twitter conversation between two of my campaigner friends made me immediately think of one of our favourite books, “Slightly Invisible” by the fabulous Lauren Child (the brand new Children’s Laureate!).

Twitter conversation between @ordinaryhopes and @topeeornottopeeIn the story, Lola and her (imaginary?) friend, Soren Lorensen, drink an invisibility potion that her brother Charlie has made with his friend. Lola, of course, doesn’t become invisible but Soren Lorensen does…. Lola is adamant that she is also invisible and says:

“You can only see me because you know what I look like. You can’t see Soren Lorensen at all”!

Just as Ordinary Hopes said in her tweet, and her post The Invisible Boy, so many people just don’t ‘know what we look like’ either!

Perhaps they can’t see us because they don’t understand us or our needs? Perhaps we’re only slightly invisible and they can see some of our more obvious needs, like wheelchair access (not that that mean’s wheelchair access is a given!), but not our less obvious needs?

Designers, developers & service providers could be forgiven for not knowing what we look like.  Nobody can ever know what other people’s needs are.  Disability is such a massive spectrum, we are all slightly invisible to each other.

That is why regulations, standards and guidance are so important!

To help make everyone visible to those decision makers and providers of facilities….

At the end of last week the BSi (British Standards Institute) published a long awaited consultation draft of the proposed changes to BS 8300.  This is the British Standard document which addresses accessibility in ALL aspects of our built environment (both outside spaces and in buildings).

I’ve been anxiously anticipating its publication (yes I am rock and roll!) and hope to publish some posts over the next few weeks on various topics covered that I have professional interest in or personal experience of.

The type of facility (or lack of) that impacts our family most, when out and about, is accessible toilets for people who can’t use the loo, those who need help to change continence pads, or those who can’t transfer to the loo without help of a hoist and/or more than one carer.  So the only section of the BS I’ve read through so far has been the ‘Sanitary Facilities’ chapter….

….and I have to say anti-climax doesn’t even cover it.

I am really disappointed to see that there’s little change in relation to those who need help to use the toilet.

I don’t believe this draft of BS 8300 will help the decision makers see us any more than they did before.

I’ve yet to do a detailed compare and contrast, but my first thoughts are that there are still clearly two classes of disabled people when it comes to toilet provision.

The intro to the sanitary accommodation chapter (chapter 18) sounds great!

“Disabled people ought to be able to find and use suitable toilet accommodation no less easily than non‑disabled people. The space requirements for suitable toilet accommodation are generally driven by the requirements of wheelchair users, although the facilities might also be used by people with other impairments..” (Clause 18.5)

“At least one unisex wheelchair accessible toilet (see 18.5.3.1) should be provided at each location where toilet accommodation is provided for the use of customers, employees or visitors” (Clause 18.5.1)

So far so good!  Wheelchair accessible toilets at each location where the other toilets are! Brilliant!

If only it meant all wheelchair users.

The ‘unisex wheelchair accessible toilet’ referred to is only suitable for those who can independently transfer to the WC.  People who need hoist or carer assistance and/or who can’t use the loo at all and need somewhere to lay down to change continence pads cannot use these toilets.

In contrast to the above inclusive statement, the recommendation for where it’s appropriate to provide toilets with a changing bench and hoist (a Changing Places Toilet), is:

“Any larger building where the public have access in numbers or where visitors might be expected to spend longer periods of time is a suitable venue for a CP facility. Such facilities are particularly important in buildings that might offer the only suitable sanitary accommodation within a locality, or in buildings where public services are provided, such as those operated by local authorities. Some commercial facilities such as large retail and leisure premises might be suitable as they provide longer opening hours and are likely to have a regular cleaning regime.” (Clause 18.6)

The way I think this will be interpreted by business (and the way I think it has been so far!), is that we are a municipal ‘problem’ and businesses don’t need to bother with these ‘special’ facilities.  It’s up to the government to provide them in strategic locations, not in locations where people actually are, or want to go.  Only if you have a large building, that isn’t near another large building that already has one, do you need to bother thinking about it!

Reading this during Mencap’s Learning Disability Week, it brings it home to me that we have a long way to go to break free of the ingrained attitude in society.  The older my daughter gets, the more it feels like people with complex needs are seen as other, even within the access community.  That families like ours are expected to accept their lot, and be grateful if the council provide some facilities to enable them to get out of their homes occasionally.

Both the current and this draft of the BS for toilets with a bench and hoist are written in a very exclusive way. The only solution given being a changing places toilet, which is a combined WC and shower, and which should be locked and ‘normal disabled people’ and ‘regular families’ should be directed to the ‘normal toilets’ – I paraphrase here, but that is the jist of it.  I really believe there are various design solutions which could create more flexible, inclusive facilities that could be more easily ‘sold’ to business as an asset for more customers/visitors/staff rather than an obligation (but I’ll blog about that later).

Slightly InvisibleThis lack of provision is something that affects disabled people of all ages, but also their wider circle.  You cannot go somewhere that your friend or loved one cannot access a toilet!

I can only speak for our family.  For myself and my husband as carers, and to represent our daughter who, quite literally, doesn’t, and may never, have a voice.  However I feel that many of my campaign friends are at a similar stage of life to us, watching as our kids grow apart from society as they outgrow the baby change unit.  Seeing the opportunities to visit places and join in activities with our wider family and friends slip away.

We don’t want to allow that to happen.  We want to retain the opportunities for inclusion for our families.

We don’t want our kids, their siblings and friends to be limited by society’s views of disability.

We need to be visible to those people who make the decisions on the most fundemental of facilities (the toilet) on whether to include or exclude us.

Spectrum Sunday
Mummy Times Two

Accessibility Stories 05.17

a rusty key with #accesslinky written below

Thank you to all the linker uppers from last month!

Round Up:

Starting the round up with a couple of neurodiversity posts (access isn’t only about ramps and lifts!)…

Rainbows are too Beautiful wrote about an experience a friend had had at an entertainment venue which prompted her to say, yes! Yes He is Perfect… AND he has a Disability!

The World of Gorgeous Grace speaks about the need for better advice and access to services around learning disability, as she reflects on GG’s Learning Disability Journey.

Picture of a rusty key saying: Share your accessibility stories #AccessLinky

Wheelchair Chic Home joined the linky with a fantastic Top 10 House Buying Tips When You Have Mobility Issues! This is definitely one to share with anyone looking to rent or buy an accessible or adaptable home!  If only the agents & developers understood the value in these features and marketed accessible homes properly so people could find them (and people might build more of them!)!

Another 10 was shared by the Firefly Community: Accessible Toilet Campaigners: 10 famous faces! So lovely to learn more about the people behind the campaigns, bringing a huge variety of experience and expertise to the table (or the bench?)! Really honoured to be included in the list myself!

And a fellow Firefly famous face, Rachel George of Ordinary Hopes linked a couple of her fab posts last month too.  The first, questioning how horrified people might be if non-disabled children (or adults!) were forced to wear nappies/pads! in her post: Some Things Are Just Wrong.

In contrast, Ordinary Hopes, also shared a most fabulous accessibility story, One Perfect Day, made possible by Cornwall Accessible Activities Programme in conjunction with Mobiloo (a charity providing mobile Changing Places Toilet facilities) – real inclusion! Just how it should be!

I hope you’ll check in again next month to catch up with the blog posts in the round up, and bloggers I hope to see lots of you again this month and *meet* some new people too!
Info on how to join in below:

Linky Info:

This linky will be open for 2 weeks, please do share your posts about ideas and experiences (good and bad!) around physical and/or sensory accessibility of buildings, places, spaces and products below…. And do check in again next month to read the round up!

Guidelines:

    1. Link up to 2 posts each month (old or new)! It would be lovely if you could add my badge (cut and paste the code in the box under the badge image below and add it into your blog post while in ‘text’ mode of your blog editor) or add a text link back to my site so that people can find the linky and read the other blog entries;
    2. Please comment on this post to introduce yourself if you’re new to the linky, and comment on some of the other linked posts to help share ideas and experiences (use the hashtag #AccessLinky in your comment)!
    3. It would also be amazing if you could share your post (using the hashtag #AccessLinky) on social media to help spread awareness of the issues around accessibility!  I’ll also try to retweet as many posts as I can!
    4. I welcome input from anyone that is affected by accessible design – users, carers, friends and family as well as designers, developers, managers and legislators (so pretty much everyone then!). I welome blogs from professionals and suppliers as well as individual bloggers as long as they keep within the spirit of idea exchange and are not sales posts for products or services.
Our Inclusive Home



A 21st Century Train Station?

EJ & EW next to the closed barrier at a level crossing

There is a lot of buzz today about the opening of a brand new station in my home city of Cambridge! Cambridge North station!

I’m a big supporter of public transport, a bit of a transport geek, and particularly love all rails (trains, light rail and underground), I think I like the security of an obvious ‘stop’ to get on and off! I’m always a bit anxious on buses that I’ll miss my stop!  Being near a rail station has always been on my house-hunting criteria list, and my husband commutes most days by train.

I’m therefore really excited to see development and investment in the railway, but I am also really, really sad that the station has not been built to provide facilities for ALL of their current and future passengers.

Earlier in the year there was a media buzz around the rail network for a different reason, when Paralympian Anne Wafula Strike, bravely spoke out about her horrible experience, when she was forced to wee herself due to lack of accessibility on the train.  I wrote this post, Every Day is a Broken Toilet Day, at the time.

Anne Wafula Strike’s experience tells us that there are not enough accessible toilets in general, or in some circumstances the way to get to those toilets is or becomes inaccessible, e.g. when you’re on a train with a broken toilet and simply ‘hopping off’ at the next station isn’t possible as ramp access to trains has to be prearranged!

However, there is another layer to this that affects our family.  Even when there is an “accessible toilet” available on the train or in the station, it’s extremely unlikely that it will be accessible to us.

A typical accessible toilet, a “disabled toilet” or sometimes known as a ‘Doc M pack’ toilet is designed with a whole host of different disabilities in mind, but the size of the room and position of fittings is predominantly designed to enable wheelchair users to access the loo.  However, the term ‘wheelchair users’, in this context, really only applies to those who can walk a little, weight bear to stand and transfer or have the upper body strength to transfer from their chair to the loo.

Those who can’t transfer on their own to the loo or, like my daughter, need a place to lie down to have a pad changed, cannot access ‘accessible toilets’.  The kind of toilet facility we can use are known as Changing Places Toilets, essentially a larger room which provides enough space for carer assistance, a changing bench and a ceiling hoist to enable someone to be lifted from their wheelchair to the bench and/or to the loo.  Indeed the research carried out by the Changing Places Consortium estimates that accessible toilets are inaccessible to at least 1 in 260 people.

There was a lot of talk of making train travel fully accessible and promises not to allow what happened to Anne Wafula Strike to happen again, however…

No train that I am aware of has a changing places toilet type provision. The only way that we could freely access train travel throughout the UK as a family, is if all stations with passenger toilet facilities included changing places toilet facilities too, and if access to and from trains became more fluid, more spontaneous (i.e. you could easily hop off at the next suitable stop if you needed the loo!).

EJ & EW next to the closed barrier at a level crossingThe thing about going to the toilet, is that even continent people can’t always timetable the needs of their bladder or bowels, hence the need for customer and passenger toilets in publicly accessible buildings, around public services and public transport!  If you have continence issues, there is even less predictability.  You cannot book a long train journey with a plan to book a loo break at certain points, because you cannot predict when the need will occur!  It is neither pleasant for the person needing a pad change to sit in a soiled pad for a prolonged period, and as a train is a confinded space, it is not pleasant for other passengers either if that person cannot alight at the next station and have their needs met in a timely manner!

So, for the moment, the barrier is still down on train access for us.

The reason I am bringing this up in relation to Cambridge North is that I’m reliably informed that Network Rail were made fully aware of the need for changing places toilets (indeed they have installed some in some of their very large stations) but they refused to consider this provision in this brand new station.

The reason given was that this was not an interchange station, and gave the examples of London Euston and Newcastle where they do have changing places toilets!!! That is a long way to go for a loo! I wonder, would they pay the fare for us to reach the London loo from Cambridge?

Photo extract of new rail map with Cambridge North station addedI would have a little more sympathy with this reasoning, if there was a changing places toilets at the nearby interchange stations on this line, namely Cambridge Station and Ely Station.  Cambridge Station has had a lot of work done recently as part of the new station square development, but as far as I know, no signs of improved passenger toilets.

However as I mention earlier, if there’s little or no potential to provide changing places type facilities on the rolling stock, then how are disabled customers to plan rail journeys if there are not facilities on the station platforms that have facilities for other customers!?

Myself or my husband travelling alone, as independently mobile, and bladder and bowel continent, people we have the choice of using customer toilets at all large interchanges and many intermediate sizes stations as well as on all intercity and most suburban trains, but actually we’d also be able to find a customer toilet pretty easily near many stations in larger towns or cities if necessary, in local cafes, shops etc.  However those with the least mobility, and the least control of their continence, have the least choice and the least provision.  In Cambridge, you’d  have to walk (or wheel) for about 20/30 minutes from the station, past a multitude of restaurants, pubs, cafes and shops (many with customer toilets) to the Grand Arcade in the city centre to find a changing places toilet.

So back to my question, is this a 21st Century train station?

I truly hope not, because if that’s the case the 21st century is no more inclusive than the last.

If we are really serious about enabling ALL disabled people to access train services, there either has to be suitable toilet provision for ALL people on the trains themselves or at ALL but the smallest stations.

 

Spectrum Sunday
Keep Calm and Carry On Linking Sunday

SWAN UK is so much more than just a chat forum!

EJ playing with some foil balloons

A post for Undiagnosed Children’s Day 2017

When J was born 6 years ago, our blissful newborn baby bubble was burst in a matter of days, by an echocardiogram, a skull x-ray and some chromosome blood tests before we even left the hospital.  This was the beginning of a very confusing time and a long list of hospital appointments and tests, over many months and years, as each came back ‘in the normal range’, ‘clear’ or ‘negative’.

J’s main ‘symptoms’ (impossible to see in antenatal scans or in a newborn baby) are developmental and sensory disabilites, which gradually became more and more apparent as she grew older, but, especially as J was our first child, it was hard to tell if early symptoms (reflux, low muscle tone, heart murmur etc), were anything to be concerned about. As the tests seemed to say otherwise, we often felt like neurotic first time parents and, living in limbo, without a diagnosis felt very isolating. You can read a little bit more about that time in my post Monkeys & Swans

We felt like the only people in this position, and didn’t really feel like we fitted in regular parenting groups, but without a name for J’s condition, I didn’t know where to look for somewhere we would feel we belonged.  If only I’d thought to google ‘Syndrome’s Without A Name’ or ‘Undiagnosed’ earlier in our journey as SWAN UK (Syndrome’s Without A Name), the only dedicated support network available in the UK for families of children with undiagnosed genetic conditions, was there all along!

We found SWAN UK just over 4 years ago, when J was a little over 2 years old and I can’t really explain how much of relief it was to find we were not alone.  That there were people who ‘got it’. And that there were people we could turn to for advice and support.  It truly was a lifeline of sorts.

I know Facebook has a bit of a bad press sometimes, and it can be a bit, ‘look at me and my perfect life‘, but it does also provide those who, for whatever reason, struggle to connect with others in real life a fantastic and easy to access medium to make those connections further afield.

SWAN was not my first dabble into support goups and internet forums.  Before J and W came along, my husband and I went through an emotional few years of recurrent miscarriage and I found refuge in an amazing bunch of women in a miscarriage support forum on Babycentre website.  Many of us have met up in real life and are still in touch now via Facebook.  I guess it’s a similar scenario in that, although miscarriage is extremely common, people don’t really talk about it and you can feel so alone.

But what I also want to highlight today is that SWAN UK is not just another forum.  Not just a webpage or a just a Facebook page.  It’s all of those things, plus there’s so much more going on behind the scenes that help to support families like ours!

The main aims of SWAN UK are:

Develop and support a community of families of children affected by undiagnosed genetic conditions.

Support the development of high quality information and services for families of children affected by undiagnosed genetic conditions.

Raise public and professional awareness of undiagnosed genetic conditions and the unique challenges faced by affected families.

So what this looks like to me (and this is just me as a parent member, I know there’s lots more I don’t know!) is:

An amazingly supportive facebook group/forum with families from all across the UK!  The group is really warm and friendly, and as it’s moderated by SWAN, and a host of volunteer parent reps, it’s not a group that suffers from confrontation or competitive parenting (like some other groups I’ve joined in the past and pretty quickly left again!).  There’s usually someone around 24/7, so there’s pretty much always a listening ear.  It’s a great place to come for advice, support and gentle ‘cyber’ hugs when you need them, as well as an place with encyclopaedic knowledge for asking totally practical advice such as types of equipment, filling out forms!  There are also separate smaller regional groups, so people closer together can arrange informal meet ups and chat about specific issues in their areas.  As well as allowing you to break the geographical barriers, another benefit of being online is that you can get involved as much, or as little, as you like, and are perhaps are more comfortable to speak openly with in a ‘virtual’ community than you’d be in real life.  The groups are all ‘secret’ so membership cannot be searched for by anyone not in the group either, so you have anonymity if you want or need it.

EJ playing with some foil balloonsIn addition to the forums, SWAN also organise and fund lots of family get togethers throughout the country! We’ve been to the zoo, a maize maze, to a soft play party and on a train ride over the time we’ve been members!  I’ve loved meeting some of the other localish families in real life, lovely to meet the children, and them to meet each other, and I think as W grows older, meeting the siblings of other undiagnosed children will also become really important for him.

Balloons!  This may sound a bit superficial, but I can’t tell you how lovely it is to receive a lovely gift of balloons, knowing our SWAN family is thinking of us and providing lots of fun! Who doesn’t love a balloon!?  SWAN try to send balloons out to children in hospital, going through a particularly rough time and occasionally randomly just to make a child smile!  As you can see in the picture, the balloons we received went down very well!

SWAN UK do a lot of work with professionals too, to raise awareness within the disciplines that families will come into contact with on their childhood journey, from Midwives and Health Visitors to GPs and NHS decision makers about the added complexities families face without a diagnosis, and pressing for better co-ordinateion of health care and social care.  Some key successes they’ve been integral in, in this area are the appointment of a specialist undiagnosed nurse specialist at Great Ormond Street and a specialist Rare Disease unit at Birmingham Children’s Hospital!

Houses of ParliamentSWAN UK, and their parent organisation Genetic Alliance, are also working with the government on policy around research, resources, services, treatment etc of rare genetic and undiagnosed conditions.  Genetics is such a new and fast moving science there’s so much happening that could make such a difference! I got to see a little bit of this work first hand last year, when SWAN UK parent reps and bloggers were invited to attend the first report of a new APPG (All Party Parliamentary Group)!  So amazing to see Genetic Alliance and SWAN influencing at all levels to help improve services for our families and really interesting to see parliament at work too!

So the reason I’m writing this today is it’s Undiagnosed Children’s Day!  A day to make a group effort to let the world know about the work SWAN UK do! They already support 2000 families of children with undiagnosed conditions but, as 6000 children are born every year with no diagnosis, there are many more they could be supporting!

List from SWAN UK website showing how various amounts of money can be spentSWAN UK are asking us to be detectives today and help find those families (like ours) who could benefit! Help us spread the word!

If you know someone you think might benefit from joining the swan community please do pass this on, and if you have a child with an undiagnosed condition please do join the community! It may sound overly gushy, but SWAN UK really is like a big friendly (and non-judgemental!) family and I don’t know where we’d be without their support! You can sit in the background quietly, or get stuck into chat in the forum, either way SWAN is there to support you and they are out their advocating for all of us!

SWAN UK relies on grant funding and donations and this list shows where some of this money is needed. If you can please help them keep up the great work for families like ours!

DONATE

Find SWAN at:

Website: www.undiagnosed.org.uk

Email: info@undiagnosed.org.uk

Facebook: @SWANchildrenUK

Twitter: @SWAN_UK

Instagram: SWANchildrenUK

 

Spectrum Sunday
Keep Calm and Carry On Linking Sunday
Mummy Times Two

Accessibility Stories 04.17

a rusty key with #accesslinky written below

What a fantastic range of blog posts linked up last month!

Picture of a rusty key saying: Share your accessibility stories #AccessLinky

 Round Up from last Month

There were a number of posts on one of my regular (and favourite!) themes, changing places toilets. Ordinary Hopes linked this very powerful post “When this is the best option you have“, i.e. the toilet floor or don’t go out at all.  Clos-o-Mat and Ordinary Hopes also commented on the lack of understanding of the need for assisted toilet provision until it’s something you need yourself, in “I’d never even thought about it” a key reason many are campaigning that it’s “Time for change” for the building standards, to be made clearer and more comprehensive!

I’m very excited to *meet* a new blogger friend, Wheelchair Chic Home, joining in this month with her fab “5 tips for styling your house to accommodate a disability” and with some more specific ideas on “Storage Ideas to hold crutches or walking sticks” in a stylish way!  I love this blog, it’s totally up my street and I’ll definitely be following for more inclusive design ideas!

My daughter EJ has sensory processing issues which affect her in all different ways (touch, vision, hearing that we know about).  Sensory processing seems to be being more and more widely acknowledged as a challenge in accessing our world for set up for the ‘average person’ and of course can vary greatly from individual to individual and vary in intensity. Rainbows are too Beautiful linked this post about how something as seemingly simple as a particular welly boot (considered a staple in every child’s wardrobe!) can enable inclusion in outdoor family activities in “We’ve got to get our kids outside!

Access isn’t all about ramps and grab rails, and I had two posts this month, telling of the frustrations faced trying to access childcare and education for their children with very different needs. Rainbows are too Beautiful’s “30 hours free childcare” and The Long Chain’s “Benjamin doesn’t tick boxes” illustrating the catch 22 of local authority juggling of services and funding between education, social care and health care.

I hope you’ll check in again next month to catch up with the blog posts in the round up, and bloggers I hope to see lots of you again this month and *meet* some new people too!  
Info on how to join in below:

Linky Info

This linky will be open for 2 weeks, please do share your posts about ideas and experiences (good and bad!) around physical and/or sensory accessibility of buildings, places, spaces and products below…. And do check in again next month to read the round up!

Guidelines:

    1. Link up to 2 posts each month (old or new)! It would be lovely if you could add my badge (cut and paste the code in the box under the badge image below and add it into your blog post while in ‘text’ mode of your blog editor) or add a text link back to my site so that people can find the linky and read the other blog entries;
    2. Please comment on this post to introduce yourself if you’re new to the linky, and comment on some of the other linked posts to help share ideas and experiences!
    3. It would also be amazing if you could share your post (using the hashtag #AccessibilityStories and/or the shorter #AccessStories) on social media to help spread awareness of the issues around accessibility!  I’ll also try to retweet as many posts as I can!
    4. I welcome input from anyone that is affected by accessible design – users, carers, friends and family as well as designers, developers, managers and legislators (so pretty much everyone then!). I welome blogs from professionals and suppliers as well as individual bloggers as long as they keep within the spirit of idea exchange and are not sales posts for products or services.
Our Inclusive Home