My monthly accessibility stories blog link-up!

(With new hashtag – #AccessLinky – as I figured Accessibility Stories as a hashtag was a bit of a mouthful and a twitter character eater!)

I’m hoping this will turn into a helpful informal tool to enable an exchange of ideas and experiences (good and bad!) of the accessibility (physical, sensory and social) of buildings, places, spaces and products, and to spread the inclusion message much further than our lone voices can!

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

I welcome input from anyone that is affected by accessible and inclusive design – users, carers, friends and family as well as designers, developers, managers and legislators – so pretty much everyone then!

The linky will open on the 1st of the month (however posts don’t have to be written that month, or indeed new!) and will remain open for 3 weeks.  Depending on the number of posts linked, I’ll write up a little round up/summary or pick out a few highlights of the previous month’s entries when I post up the next linky.

The lovely Rainbows Are Too Beautiful has a really helpful Linky Guide (I use linky tools so the interface is a little bit different but the principles are the same).

I’m really looking forward to reading some fab posts from friends old and new!

Hop over here to find the most recent linky and to have a browse through the previous ones!

October Celebrations!

It’s been a busy few weeks in our (sooner to be) inclusive home!

Not only was it the half term holiday from school and nursery (seems to have come around V quickly since the summer holidays!), we also had….

1 x wedding anniversary! = a yummy grown up meal out!

2 x children’s birthdays! = one outing with the grandparents to the beautiful gardens at Ickworth House National Trust and one halloween craft party with the kid’s cousins and the neighbour’s kids – eek!

2 x more family birthdays …. and…

…. my 2nd blog anniversary!

img_5605Quite how I managed to set up and publish my first post in such a busy fortnight two years ago I’ve absolutely no idea!!

By lovely coincidence we had surprise cause for extra celebration just before my blog anniversary our planning permission for the adaptations came through several days earlier than we expected the decision!  Very exciting! We can get on and get started, after all we’ve only been talking about it for two years 😉

I know the disabled adaptations process can be slow, but I would like to make it very clear that in this instance it’s entirely our own fault that it’s taken this long! Day to day life, work, a minor disagreement on the shape of the roof of the extension (a result of having 2 designers in the house!) and getting distracted with other projects (including this blog – oops!) has sort of interrupted actually getting on with the drawings and submitting the application!

I’d like to do a more detailed project update blog post in the next week or so (now that we have the official go ahead!) but I’ll try not to let that distract me too much form the actual project!!

We MUST try and get those detailed drawings started asap and keep up the momentum to achieving our inclusive home!


Accessibility Stories (Oct 16)

Rusty old key in a door lock

Thank you so much to everyone who linked up with my first ever #AccessibilityStories linky last month!

Perhaps it’s a reflection on the circles I move in (the toilet obsessed!), that several of the blogs linked were posts about changing places toilets.  A lack of true accessibility and inclusion, affecting so many families (including ours) being able to take part in ‘normal’ activities across the whole country!

Brody, Me & GDD beautifully describes the grim realisation as her boy grows that there is very little toilet provision for older children and adults who need assistance in the loo, and comes to the conclusion that she must do something about it! “We can choose to be affected by the world. Or we can choose to affect it

Mum On a Mission describes so eloquently the heartbreak of her and her son having to ‘make do’ in an unsuitable ‘accessible’ toilet in The future I’m trying to Change and, on the Selfish Mother, she talks of the struggle of feeling unheard and unvalued, when explaining to business’ how excluded our families are made to feel, in Why are Some Customers More Valued than Others

Ordinary Hopes has written so many amazing posts about how the lack of changing places toilets limits her son’s independence and opportunities. A crucial point she makes is that her son IS continent.  Changing places toilets are not only necessary for those who need to change nappies or pads.  For her son it’s not an issue of waiting until he gets home to change a pad, or grinning and bearing a pad change in an unsuitable space – he needs the use of a hoist to be able to use the loo.  To be able to use the loo like his friends and stay out and have fun, rather than being ruled by his bladder. He is very much aware of this inequality in provision and illustrates this with his lego character Tina. However, some venues do really live up to their inclusive image and this lovely positive post about the Eden Project describes just what a difference that makes!

Little Mama Murphy linked up two posts this month about her amazing home adaptations project! Another issue so close to my heart! ‘Disabled adaptations’ can be such a confusing, limited and expensive process. Many of us watch programmes like DIY SOS and wish the team would miraculously appear and perform an amazing inclusive family transformation of our home.  Well Little Mama Murphy has managed just that! With a team of the most brilliant friends and family members, donating their time and skill to carry out the #BigBuild4Hugh! True community spirit!

Rainbows Are Too Beautiful (I love the title of this blog!) reminds us that not all accessibility needs are physical.  Sensory issues can make a place inaccessible to many people too, and she describes how her family often have to reccy a venue in advance of visiting as a whole family in Caution at the Aquarium

You can read all the posts linked so far on my Accessibility Stories Pinterest board.

Rusty old key in a door lock as an analogy for difficult access

The linky for October is now open and I’m really looking forward to reading some fab posts from friends old and new!

Please read the guidelines and then get linking below (the linky will be open for 2 weeks)!


  1. Link up to 2 posts each month (old or new)! I don’t have a badge, but it would be lovely if you could add a text link back to my site so 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) 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.

Shouldn’t all homes be inclusive?

Originally posted on Clos-O-Mat & Building Talk

Before my children came along and I became a full time parent carer, I worked in architectural practice.  Most of my design experience has been in home design, from individual house alterations to large scale newbuild and refurbishment projects.

Rough sketch of a house planI have to say I particularly enjoy the challenge of getting stuck in to an individual home project.  It’s extremely rewarding to see how much of a difference a bit of lateral thinking, and sometimes just a few small changes, can make to the way a house works for a family.  Perhaps by releasing a bit more breathing space through changes to the layout, adding better storage to make rooms feel less cluttered or maybe extending out or up to add extra rooms.

For me it’s important to take a broad view, think about how a family uses the spaces now, and in the future.  Are the room functions in the right places?  Is there any under-utilised space? Can circulation be simplified?

Becoming a mum to my little girl with developmental disabilities has reignited my passion for encouraging more widespread consideration of accessible and inclusive design in home design, as well as places, spaces and products.

I’m also a keen advocate of sustainable design (a much, probably over, used term!), and am passionate about improving the sustainability of our new and existing homes.  But by this I don’t just mean energy efficiency, that is just a part of what good sustainable design should be.

Sustainability is also about longevity, cost effectiveness and minimising waste.  If a home is built with flexibility in mind from the start, that seems to me to be fundamental to the sustainability ethos – in that it will last longer, cost less over the lifetime of the house and be changeable without being wasteful.

Designing a home for a whole lifetime’s needs (to standards like lifetime homes), will make subsequent alterations as unobtrusive and cost effective as possible and, quite apart from anything else, if you reach a time in your, or a loved one’s, life when greater accessibility becomes more critical, invasive building work is probably the last thing you will want to think about!

Accessibility also nicely slots in to the health and wellbeing aspect of sustainable design – why not make sure our homes more welcoming to ALL of our friends and family whose needs may be different to our own (perhaps granny with a walking aid, or your newly crawling niece or nephew?).

However for some reason inclusive design still doesn’t seem to be seen as a mainstream concept.  There’s a perception that accessibility is only for wheelchair users. House design is either ‘wheelchair friendly’ or not, and there really is an acute shortage of the ‘wheelchair friendly’ variety.

It’s widely acknowledged that there is a housing crisis in the UK at the moment, with particular shortages in the south east of England and this compounds the shortage of accessible homes.

EJ in her standing frame facing her baby brother in a bouncerSomehow the idea that inclusive design (or even better accessible or universal design) is of benefit to us all, isn’t being embraced!  I guess if you are young and fit it’s easy to be oblivious as to how our environment and buildings can make life difficult (or even impossible) for some people, but if you get injured and have to use crutches or a wheelchair, or even try to push a pram or wheel a large suitcase around, the environment can suddenly appear very inhospitable.

One of my dreams is to see inclusive design become ‘everyday’, for there no longer to be any need to differentiate inclusive design as a separate, niche, concept.  I want to see fantastic examples of accessible homes featured on TV makeover shows, and in the homestyle magazines, so that disabled people and their families are presented with inspirational examples of how fantastic their homes can be, and (perhaps more importantly) so that non disabled people see inclusive design as an interesting and exciting design approach for life-long happy homes – to break the perception that accessibility is all ugly plastic grab rails and old fashioned stair lifts.

I want to see a celebration of design that is flexible for a variety of needs, design that not only works for you, your children and your grandchildren but that is stylish and ideal homes worthy!

Good inclusive design should allow everyone to be able to participate as fully with family life (as they want to!) as naturally as possible – what can be more valuable than that?

Keep Calm and Carry On Linking Sunday

My #TravelStories

Wheelchair with buggy board and seat for sibling
(In response to the ‘Greater Cambridge City Deal’)

I’ve never commuted by car.

In my working life, I actually enjoyed my morning commute by train or tube (when I lived in London), and underground (when I studied in Glasgow), allowing me time to get stuck in to a good book or listen to my ipod – yeah, ok, not always, I certainly don’t miss having someone’s armpit in my face!

I’ve also enjoyed commuting by bike in London and in Cambridge.  I love cycling and it’s by far my favourite mode of transport, IF the infrastructure is there (otherwise it’s a wholly stressful experience!), if the distances allow and IF you are able to!

I’ve always found buses stressful.  Possibly my own anxiety issues?  They seem less predictable than train/tube/tram, the time is harder to judge and I’m always anxious I’ll miss, or not recognise, my stop. I’m a bit (actually, a lot) of a map geek and I guess I like the clarity of trains and tubes.  In fact I’d describe both me and my husband as map/transport geeks!  It seems perfectly natural to us to have selected each of our homes together based on the transport links, train lines and cycle routes!

EJ in a baby carrierWhen EJ was small, public transport was still easily doable.  I didn’t attempt the faff with the pram/pushchair as I had a baby carrier for walking the dogs, so I used it most of the rest of the time too.  EJ’s always been light for her age so I carried on in that way pretty much until she got her prescribed specialist buggy from wheelchair services, which coincided with her brother arriving, and her starting nursery in a neigbouring (awkward to get to by public transport) village.  It was at that stage I began to use the car a lot more.

As I say, I love cycling and we are a cycling family so we do have a selection of bikes/accessories to enable us to carry on pedalling, including a fantastic family trike (zigo leader) which has a detachable front pod that can be used as a buggy.  As EJ is a wheelchair user, we can’t just cycle somewhere without having a mobility aid at the destination!

Trike on a car free cycle routeHowever there are limits to how much and how far we can cycle, physically (I’m pretty exhausted generally through lack of sleep and I do a lot of lifting and carrying in my role as carer) and also the time I feel is reasonable to expect the kids to be strapped into bike seats.

Public transport, on my own, at rush hour, with wheelchair and two children… no…. just, no.

I don’t mind driving from time to time and in many situations I now find it necessary (to take the kids to different destinations.  To transport the dogs, shopping, wheelchairs, walking frames….).

However I now find myself commuting by car.  And I hate commuting by car.

EJ has just started Year 1 at special school.  It is 6.9 miles from home (so google tells me).  The next closest school (and, apparently, officially her catchment school, although I have never found or been supplied with any documentation to confirm this) is 8.5 miles from home.  We have not been allocated school transport.  With EJ less than 6 years old, I don’t think I would be taking up school transport even if we were offered it, I’m not ready, EJ is still my baby girl and it’s something I’ll investigate further later down the line.  In the meantime I’ll take my little girl to school myself, like I would do if she was at mainstream school.  However as she’s not at mainstream school that (normal parental job – the school run) involves a 6.9 miles journey at rush hour.  So we drive.  It takes us at least 40 minutes there and then about 20 minutes home, which is a long time in the car, but I feel most guilty for my almost 3 year old being stuck in the car all that time.  (And of course then there’s the school pick up later in the day, so in total it’s 27.6 miles/day.)

EW on the train platformOnce or twice a week my husband is able to drop EJ at school on the way to work, leaving the car close to school.  The wee guy and I will then make our way into town by public transport, which involves at least one change and generally a longish walk, depending on the route we choose.  Thankfully EW is a bit of a train fanatic so he loves that part of the journey (however if more parking restrictions come into force this may no longer be possible for us, as we can’t afford the cost of high car parking charges on top of all our travel costs).

The current ‘City Deal’ proposals for Cambridge are a real worry for our family and I know they are for many others too.

I don’t feel we have any viable alternative to the car – I would LOVE if we did.  The proposed congestion control points will impact directly on our current route.  We will have to change to a longer way round, along with everyone else, so not only will the distance increase, it will also become busier.  Our journey WILL take longer.

I don’t have the answers.  I totally understand this is an extremely complex puzzle, but it seems to me that if you make driving awful for the average commuter (the ones you are trying to encourage onto public transport), you also make it awful for everyone else, including those who have no other viable options.

Us. Other disabled people. Carers and community services, local residents and local business to name a few that spring to mind.

I think there have already been a few contradictory strategic decisions in the city.  Introducing charging for car parking at the park and ride, for example, seems to me to be counter to encouraging people onto the bus or cycling from those out of town locations! Positive reinforcement works for kids (and dogs! 🙂 ), perhaps it does for commuters too!  Wouldn’t it be better to be offering incentives/rewards for ‘good behaviour’ rather than punishing the ‘bad’!

In our ‘special needs world’, there was a county decision a decade or so ago to consolidate the special schools into a fewer number of better equipped schools.  Great in many ways as we love EJ’s school! However it means kids have to travel further distances and most of them have to be driven to school (either by bus, taxi or private car), and at least some of the staff need to drive as they also have community support roles to fulfil, so it’s inevitable that there will be traffic trying to get to the school at morning rush hour.

My feeling is that if you make public transport and cycling the most attractive option for the fit and able individual commuters, you have a far better chance of striking a natural balance between car use and more sustainable forms of transport.

Make the cycling infrastructure truly integrated (on my route into the city centre there are still many hairy sections and tricky junctions).

Improve public transport.  We’ve yet to see how the new Cambridge North station might improve congestion, and I know there are proposals for another new rail station at Addenbrookes in the South of the city.  Perhaps there are other options too, for additional suburban stations on other lines into Cambridge? How about a station in Cherry Hinton/ Fulbourn on the Ipswich line for example?

Wheelchair with buggy board and seat for sibling


So this is my tuppence worth on the Cambridge congestion problem.

I know something has to be done, it really does, but to make sure some of our #TravelStories don’t get even worse, please think about the non typical commuters and the people living/schooling in the the midst of the congestion zone too.

Please think about those who who have little or no choice but to drive.

Accessibility Stories (sept 16)

I am very excited to be launching my shiny new linky today!

I’m hoping this will turn into a helpful informal tool to allow an exchange of ideas and experiences (good and bad!) of the accessibility of buildings, places, spaces and products, and to spread the message much further than our lone voices can!

Rusty old key in a door lock

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 intend for this to be a regular monthly thing, on the last Thursday of the month, so a round up of the month’s posts of sorts (however posts don’t have to be written that month, or indeed new!).  Depending on the number of posts linked, I’ll write up a little summary or pick out a few highlights at of the previous month’s entries when I post the next link.

I’m really looking forward to reading some fab posts from friends old and new!

Please read the guidelines and then get linking below (the link will be open for a week)!


1. Link up to 2 posts each month (old or new)! I don’t have a badge, but it would be lovely if you could add a text link back to my site so 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) 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 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.

Let’s stop obsessing about shoes!

EJ's purple school shoes

EJ is delighted to get back to school after the summer holidays! She has no formal communication (or at least not that we understand……yet!?) but it was clear from the excited bouncing in her chair and her lovely big grin that she knew exactly where she was and was raring to get back to a routine, fun activities and way more stimulation than I’ve managed to provide here at home! She loves school!

EJ outside school with a big smileEJ is now in Year 1 at a special school.  Eighteen months ago we agonised over the decision on which school would be best for her.  Where possible I’d always choose inclusion.  However on visiting several schools, including our lovely mainstream village schools and several special schools we could see straight away that her school would be the perfect fit!

EJ’s school has a uniform.  I like the idea of school uniform.  It gives a sense of identity and belonging to the children, and makes organising an outfit in the morning so much easier for me!  EJ’s uniform is a nice balance of comfort and practicality and (I think) as smart as a school kid ever really needs to be.  Soft polo shirts, sweatshirt or cardigan and trousers (which in EJ’s case are generally jersey fabric or leggings).  They have an official branded clothing, or you can wear regular shop bought items in the school colours.  I guess at a special school they have to be pretty relaxed.  The children have such a variety of disabilities, sensory needs and medical conditions that clothing has to be comfortable and adaptable for school activities and to allow for independent and assisted personal care.

The same goes for shoes, black is the generally preferred colour, but as long as the shoes are practical for school activities we’ve found the school are happy, which for EJ is just as well as we struggle to find the right shoes for her in any colour!

Last year, when EJ was starting reception, I scoured the shoe shops and trawled the internet looking for suitable black shoes.  EJ used to wear AFOs (Ankle Foot Orthosis), splints, which made finding shoes pretty tricky.  The best we found were double velcro fastening sandshoes which allowed you to open the shoe right up to get the base of the splint into the shoe.  She now has orthotic insoles which raise her heel slightly within the shoe, so for this reason, and to give her some ankle support, she needs to wear ankle boots, preferably with two velcro straps to get the insole into the shoe correctly and obtain a good fit around her ankle.  EJ also has very small, and very the narrow feet (off the Clarks chart narrow!).

EJ's purple school shoesThe best we could do last year was dark pearlised purple boots and she has started this term in navy and pink sandals! (Incase anyone reading has the same sort of shoe fit issues as EJ, the brands we have found that work best for EJ are Ricosta and Richter – neither of which are cheap!)

This is probably a whole other post (rant), but the “girls” school shoes selection is flooded with pumps, mary jane and the occasional brogue style shoe.  Next to nothing with any ankle support.  Surely it’s not just children with “official” orthopaedic issues that would benefit from ankle supportive shoes?  I’ve seen a few options in the “boys” selections (although still not many in the school styles), and although I’m not swayed by the girl/boy marketing, the problem is boys styles are always wider fit, and just don’t fit EJ.  I’m very excited to have come across one black ankle boot this year online from mainstream brand Startrite, so I’ve ordered them today and I hope they will be narrow enough (they do have some patent leather detailing and some decoration though, so I’m not sure if they would pass a strict school uniform test…!).

So what if circumstances had been a little different, if  EJ’s academic learning was more consistent with a mainstream approach and we had chosen to send her to a mainstream school?

It made me really sad to read various stories in the news (like this one in the Guardian) about various state schools sending kids home for not wearing exactly the right clothes or shoes.  As I say, I like the idea of a uniform, but I don’t understand why it would need to be so strict that kids can’t wear something comfortable?

Lots of the comments on these articles made me equally as sad, things like:

  • “Kids need to learn about sticking to rules”!

But our kids aren’t in the army! They are learning all sorts of things at school, rules of all different kinds, their lives timetabled from the age of 5, why does a specific sort of trouser fabric or shoe style need to be a part of that?  Some kids like to challenge rules too.  Conformity isn’t the only right way, seeing things differently, being creative can be a valuable asset in life and work! Why get bogged down in a stand off about shoes when you could be supporting the next generation of great innovators!?

  • “Kids need to learn about the real world. I don’t have a choice about my work uniform”

Well, (1) that’s just one small aspect of the real world and work uniforms aren’t worn in all jobs and (2) most people do have some sort of choice in that, it’s part of the deal of that job contract. Kids at school don’t have a choice, they have to go to school and, until 6th form, that school was was most likely chosen for them by their parents or the Local Authority!

For several reasons I think an overly strict school uniform can be exclusive, rather than inclusive and levelling (the very reasons generally cited for having a uniform in the first place):

1. Sensory issues

Many kids have tactile sensory issues, sensory processing issues, ASD…. and have aversions to particular clothing (labels, stiff collars, scratch fabric, waistbands, restrictive shoes….). Children constantly distracted by their clothes are not going to be able to focus properly.  Isn’t it more important to make sure our kids are ready and receptive to learn to the best of their abilities than obsess over the specifics of what they are wearing?

2. Physical

The traditional school uniform is just not practical for many children with physical impairments.  Long skirts, stiff waistbands, stiff collar and tie, blazer.  In EJ’s case, she spends much of her day in her wheelchair or using mobility aids.  She needs help with personal care and help to transfer from her chair, either with adult support to stand or using a hoist.  She wears stretch fabric trousers, elastic waistbands and loose polo shirts so that she’s comfortable. Flexible clothing also makes dressing and undressing easier, currently for the adults assisting her, but in the future easier for her to do independently.

3. Highlighting difference

Some comments on these school uniform articles highlighting the issues for children with special needs and disabilities, were countered with replies like “oh, well that’s different, I’m sure the school would make exception” –  I think this is the attitude that makes me most uncomfortable! Disabled children, and children with other differences from their contemporaries, are already singled out, maybe visibly so or by a hidden condition (a learning disability, sensory issue, gender dysmorphia….).  All kids have enough going on trying to feel part of their school community without a big flashing arrow pointing them out as an exception.  Do they really need to be made to stand out more because they can’t wear clothing or shoes that don’t match the strict regularity of their contemporaries?  Perhaps even making the other kids resent them.  Will some kids just go along with the ‘rules’ in order to try and fit in, and as a result be uncomfortable and distracted throughout their school day? How will that help their learning?  And what of those who don’t have an “official’ diagnosis? Those who’re just fidgety and uncomfortable being restricted in shirt and tie, why shouldn’t they get to wear something more comfortable?

If we really want the uniform to act as an visible leveller then shouldn’t all kids be given the same flexibility?

I guess this is a request to all schools to think about how their policies affect ALL kids (and also to retailers to provide uniforms for all needs too – especially supportive shoes for girls!) and to think about making their school uniform policy inclusive, as a small step in helping make the school community and therefore future society more inclusive.

Spectrum Sunday



When is accessible not accessible?

Changing Places toilet selfie

Toilets may not be the most glamourous element in a building but they are certainly necessary! Often classed as part of the building’s ‘core’  – it’s essential workings – we’d never consider designing a building without them.  Indeed we wouldn’t even expect to attend a temporary outdoor event without some toilet provision being put in place…. but are they accessible to everyone?

sketch plan unisex accessible WC
Unisex Accessible WC

Architects and developers all know this little diagram of a unisex wheelchair accessible toilet from part M of the building regs.

There’s lots of info about the design of this loo, the minimum dimensions, the positioning of sanitaryware and fittings which are all critical to enable a wheelchair user to transfer to the loo and (maybe just?) enough space for a carer to assist an ambulant disabled person to use the loo.

It’s automatic to include this accessible toilet in our designs now (of course it’s part of legislation so we have to, but) it’s inclusion isn’t it? Everyone has to go to the loo so we need to make sure that where there are toilets, there’s a facility for everyone, right? Well, actually, no.

Changing Places toilet selfieThe thing is, this ‘unisex accessible wc’ is actually pretty small when it comes to using them in a wheelchair, particularly a motorized chair (check out your nearest one!), and impractical (if not impossible) if you are not able to transfer on your own or can’t stand up to change an incontinence pad.

It seems so obvious to me now, when I really look at that drawing, and see the compact little wheelchair drawn neatly next to the loo.

My 5.5 year old daughter needs assistance with personal care.  She wears nappies/pads.  She outgrew ‘baby change’ tables long ago and yet cannot use this accessible loo.  What do we do? Where can she change?  (I refuse to entertain the idea of laying her on the floor!).

Sometimes (if we ask) we may be offered the first aid room.  Which for us is doable as EJ is still small enough for me to lift without a hoist, and we don’t need the use of a toilet – but this is discretionary and not a permanent solution.

So most often we go home – we cut our trips to the length of time it’s reasonable between nappy changes – we are timetabled and our lives restricted by the toilet.  Or, if it’s not possible to go home, we might change her in the car (not very dignified, or practical, especially as she grows older).

So many people end up with no choice but to change their loved ones on that small area of floor in the ‘disabled loo’.

People don’t really talk about their toilet needs, or the needs of those they care for – it’s all a bit embarrassing and many people just make do or stay home – so I think the lack of facilities is just a case of not knowing there is a need, unless you have the need, and a lack of joined up policy that we (society) are only just starting to catch up with.

I’m ashamed to admit that working as an architect (pre-children) I didn’t put two and two together. I worked in housing mostly, including extra care housing, where we designed accessible homes with space for carers, bath and shower rooms with ceiling hoists etc, but it really didn’t occur to me that those sorts of facilities wouldn’t be provided for people when they’re out and about!

The best practice standards for Changing Places toilets were conceived to address these needs.  A CPT is essentially a larger room, with space enough to accommodate a large wheelchair/scooter, 2 carers, a changing bench and a ceiling hoist (in addition to toilet and wash basin).

Plan of a Changing Places Toilet
#ChangingPlaces Toilet

The Changing Places campaign  has just celebrated it’s 10th year, and in that time the Changing Places toilet best practice standards have been included in BS 8300:2009 (section 12.7) and referenced in Part M of the building regs. However, despite official acknowledgment of this need, it’s still not compulsory for ANY building to install a changing places toilet, irrespective of building use or occupant capacity.  I think this is a huge deal, because when something is only recommended it implies it is ‘not essential’ – however to those of us who need them, they really ARE essential!  There’s also a huge potential to miss recommendations completely, when already juggling the complexities of all the complusory regulations in a large building project.

There are now over 850 registered Changing Places in public places and venues across the UK, which is both exciting (given that from nothing the campaign has had 850 successes) and also shocking (in that there are only 850 toilets in the WHOLE of the UK that my daughter can use!).  For example there are only 2 CPTs listed in the whole of our home city of Cambridge!  One at Addenbrookes Hospital, and the other in the Grand Arcade shopping centre – I would hope more places in Cambridge would welcome disabled visitors than that, but how far is it reasonable to travel away from the only toilet you can use?

It does have to be acknowledged that Changing Places toilets do require a significant amount of space and, understandably, to many smaller individual retailers/venues & in refurbished buildings the degree of space and cost required can be quite a commitment.  However if your project is smaller, or existing building too awkward, to accommodate a BS standard changing places toilet, please don’t dismiss the idea! There are other options for upgrading the standard facilities and it is definitely worth speaking with access consultants or the CP consortium to help you get the best out the space available.

My own view is that in smaller venues, particularly those with a family friendly ethos, should be looking to provide more inclusive ‘family facilities’ – perhaps where they’d currently provide a baby change area, one that would provide space for all, from babies to grannies (and everyone inbetween) who need help to use the loo.  Something in the spirit of these proposals by the Space to Change campaign. (Note: if thinking of combining facilities, care has to be taken to ensure the needs of those currently met by the ‘unisex accessible WC’ are not compromised).

As an architect passionate about inclusive design, I’m hoping that we can encourage our clients to see the positive impact in upgrading their toilet facilities.  Make those ‘reasonable adjustments’, asked for by the Equality Act, and make buildings welcoming and inclusive for all.

Family out shoppingOften the focus of discussion around ‘more standards’ can become negative.  Quite understandably, clients are concerned about cost, loss of area & sometimes security…. however aside from the improved sense of inclusion around their business, there is the huge potential increase in patronage by disabled customers (and not forgetting their friends and family!), if the facility is effectively promoted and well integrated in the design to ensure good security.

Research tells us the purple pound represents billions to our economy! People with greater accessibility needs, families like ours, want to get out and about and enjoy our built environment, socialise, spend money as much as the next person!

Where EJ can’t go, then we can’t go, so we will choose to go to the shopping centre, restaurant, cinema, tourist attractions where we know our child, friend, partner, parent can use the loo comfortably – We will stay there longer, and we will spend more money!

I’d like to end with this link to a fab blog by fellow changing places campaigner @ordinaryhopes who, I think, really illustrates the challenges our built environment presents us with, and one of my favourite quotes from one of her posts:

At the end of the day, it isn’t really about the toilet. Nobody goes to a theme park just to use their toilet. We want to be able to use their toilet so that we can go to the theme park


Keep Calm and Carry On Linking Sunday

check out the toilets

sketch plan unisex accessible WC

Have you ever considered how wheelchair accessible the average ‘disabled toilet’ might be? Next time you are out at a café, shop, cinema, or even in your office, check out the toilet (even better take a friend or colleague and an office chair, or wheelchair if you have one, and do a bit of role play! – I’d especially love for building developers, designers and facilities managers to try this!)…..

sketch plan unisex accessible WC
Unisex Accessible WC

Now open the door…..

  1. Could you wheel a chair into the room? Is there space around loo for the chair so that you (the seated person) could transfer to the loo (some people prefer to transfer from the side and some from the front)?  There’s not a bin in the way is there? That’s a very common frustration! Or a mop, hoover or even spare office supplies!? More common than you would imagine!  If you can – brilliant! – that’s a tick from many part time wheelchair users and full time wheelchair users able to self transfer.
  1. However, now imagine you cannot transfer to the loo on your own. You may be able to stand and weight bear so perhaps your friend (carer) could help you?  Is there enough space to do that? With the chair in there too…. and the door closed? A bit of a squeeze?  But what if you cannot weight bear? Can your friend help you get over to the loo?  Is there a ceiling hoist? A portable hoist?  If not is it safe for them to lift you from chair to loo!? Probably not.
  1. Finally imagine you wear an incontinence pad and cannot stand up to change. What do you do?  Is there a changing bench big enough for you to lie on? A hoist? If yes – brilliant! Gold star! If no, what do you do?  Are you prepared to be lifted by your friend out of your chair to lie on the floor? And is your friend happy to lift you, another adult!, on a slippy toilet floor, lower you onto the floor and then kneel down on said floor to help you to change? I suspect not…!

The solution to scenarios 2 & 3 would be a #ChangingPlaces Toilet (as well a whole range of other scenarios for which changing places are the solution too).  A toilet with a changing bench and hoist and a bit more floor space that can accommodate a wheelchair user, their wheelchair (some electric wheelchairs in particular are lot larger than the compact one shown in the above sketch!), plus 1 or 2 carers to move around comfortably.  Have a look at the map on the Changing Places Consortium website to see where the nearest one to you is.  Chances are it’s not very close! As I sit writing this, google maps tells me the closest one to me is 2.5 miles!

Would you travel that far to use the loo!?

No neither would we, so we have to go home or change our daughter in the car.  However there is so often no choice for people but to use that small, uncomfortable, dirty toilet floor…..


Keep Calm and Carry On Linking Sunday

talking of home

Vaila and the other speakers on stage

I gave a short talk at the Health, Social Care & Housing conference last week!   One of a series of sessions running parallel with the main Chartered Institute of Housing Conference in Manchester from 28-30th June (#CIHhousing16).

Laptop showing powerpoint slides It’s totally out of my comfort zone, but raising awareness of inclusive & accessible housing is such an important issue to me that when Habinteg kindly asked me to join them in a talk, I just had to say yes!

Habinteg are champions of accessible design and are one of the founders, and now maintainers, of Lifetime Homes standards (the widely used inclusive design standards for housing). Habinteg’s Paul Gamble chaired the session, which examined the links between accessible housing and the pressures in social care.  The two other speakers were researcher Martin Wheatley (@wheatley_martin) and Michelle Horn from Centre for Accessible Environments.

Martin presented highlights from the new research he’s been carrying out (involving Habinteg, Papworth Trust, IPSOS Mori & LSE), trying to identify and quantify the REAL need for accessible housing. Such a difficult area to pin down as not all people who need increased accessibility necessarily identify themselves as disabled, and/or may not be ‘in the system’, so even these new results could be an underestimate of the real need. (And of course that’s putting aside the fact that although every family doesn’t ‘need’ their home to be accessible right now, every family, at any point in time, could need their home to be more accessible for themselves or for their wider friends and family).

Some really interesting findings were presented, which could help give context to, and generate a more widespread appreciation for, the value of inclusive and accessible design in the mainstream.  The two findings that excited me most were:

  1. Disabled people are not mostly old people! Martin’s stats showed that over 50% of disabled people are working age people or children.  I think this is really important for design, because often the perception of accessibility is ‘old age’ and this often takes the style and glamour out of it! (Not that I’m saying older people are not stylish and glamourous you understand! I know many who are! – but there does seem to be a hint of the industry not trying very hard when it comes to design + old age.
  2. Accessiblity features don’t put house buyers off! I think this is huge! Part of the research was a survey of a typical cross section of society (with a broadly proportionate number of disabled & non-disabled people). The question was broken down into elements (broadly similar to the lifetime homes categories) and most were seen as an advantage rather than disadvantage.  It was just the very specialist items, like vertical lifts, that were deemed were off-putting (presumably to those who didn’t need them!). I think this is really valuable information to help demonstrate the desirability of accessibility!

Michelle talked of our existing housing situation in the uk. For example, at present only 6% of our homes have even the basic accessibility features, in line with the new ‘visitable’ building regulations standards (Part M: Category 1).  So even if we were building 100% of homes to lifetime homes standards (or Part M: Category 2), it’s going to take us a very long time to reach anywhere near enough to house the current estimate of 20% of families with a member who has access needs. And if we are to continue on our current trajectory, only providing 10% of wheelchair accessible housing in our newbuild developments, there’s no doubt that more expensive (and disruptive) adaptations will continue to be necessary to existing properties.

Vaila and the other speakers on stageMy own contribution to the talk was one of two halves.  Firstly our own home story, told from a family perspective, what ‘making do’ actually means for us and what we plan to do to our house – you can read part one of my talk on Habinteg’s blog.

The second half was more of a call to action – How do we shake the perception that accessibility is niche? That there isn’t inclusive design & normal design, that if society is really serious about inclusion and equality, then shouldn’t all design be inclusive? Edited to add: Habinteg have posted part two on their blog too.

I’m so glad I took part in the talk. It was great to meet & chat to the other speakers and we had some lovely feedback from people who attended.

Habinteg are following up with a day of action on Friday 8th July!

Do get involved on twitter with the #ForAccessibleHomes hashtag!


picture books

Children's books

One of the things I miss about not working in the office is access to the practice library.

The internet is brilliant for finding information, ideas, images…. especially when you are researching for a blog from the comfort of your own sofa!  But not everything is available online.  Building standards, reglulations and technical design guides for example.  I’ve also found it quite tricky finding interesting and inspiring examples of accessible housing projects online… and of course the internet is not quite the same as flicking through real paper books, with pretty pictures in.  Designers do like a pretty coffee table picture book or magazine for a bit of inspiration!


The picture books beginning to take over my bookshelves are not quite relevant for building design… unless you count Iggy Peck Architect, Rosie Revere Engineer & What Do People Do All Day?!

It was my birthday recently and some of my lovely relatives gave me some money to spend so I thought it was about time I treated myself to some nice new books (to compete with the kids on bookshelf space!) and to get me up to date with new ideas and get some design inspiration.

So, as you do (when you want some geeky techie books and coffee table architecture books), I popped onto the RIBA Bookshops website and searched for:


Ok well I’ll try:


I wasn’t expecting loads of titles, but I have to say I was pretty surprised to see next to nothing come up on any of the searches I did for accessibility, inclusive design, wheelchair accessibility….!  So much so, I emailed the bookshop to ask if I was missing something, but they only came back with a couple of other titles.  Another big surprise was that, of all the titles I found, only 2 are post 2010! Only two accessible design titles listed in the UK’s biggest architecture bookshop published after the Equalities Act!?

It would be nice to think this is because accessible & inclusive design publications don’t need to be singled out from the general design books….. maybe one day….. but I don’t think that’s it.  I just don’t think we (we, as in everyone, not just designers) have grasped the importance of accessibility for all of us, not just as a niche, not just as a token gesture.

My other theme of interest is sustainable & eco design, and it’s telling just how much a general popular interest in this concept has broadened it’s appeal, and I guess, snowballed the demand for ‘eco’ building, such that there is now a pretty good selection of specialist books for that subject, plus coverage in general architectural design books, magazines and the home design media.  My searches for titles in this category came up with much more healthy results:

Eco homes/housing/house = 121/154/600 products

Green homes/house = 22/14 products

So, I don’t quite know how we start it, but for so many reasons, not least if we are serious about building an inclusive society, we really need to start an accessible design snowball ASAP….!



slipping through the cracks

A post for Undiagnosed Children’s Day, 29th April 2016….

The very nature of an undiagnosed condition (a Syndrome Without A Name) is that it is not the same as any other that’s been identified.

Of course, every single one of us is different (whether deemed to have any physical or mental health condition, disability or not). And people who are diagnosed with a syndrome can be affected by it in very different ways (in the case of rare disease there may be very little known about the condition at all!), so diagnosis rarely gives a full picture.

And perhaps there are disadvantages to being ‘labelled’? Largely around preconceptions and conclusions that are leapt to about how YOU may be affected – when in reality there’s likely to be a huge variation from person to person.

However there are advantages in diagnosis too, which I’d say outweigh the disadvantages no matter how rare the condition, not least because it can help to stop you slipping through the cracks.

EJ as a new babyMy antenatal tests gave no indications that EJ would be anything other than ‘a normal healthy baby girl’ – a commonly used phrase, and one that pregnant women are so eager to hear.

In the past perhaps I hadn’t really considered the implications of the phrase, how it separates ‘normal’ from, from what? abnormal? different? unique?!

As a phrase it now it tends to make me wince, because….

What is ‘normal’?

Indeed, what is ‘healthy’!?

When EJ was born, a few ‘issues’ rang some bells with the neonatal paediatrician and he ordered chromosomal blood tests while we were on the maternity ward.  These came back ‘within the normal range’ so we were sent home reassured there was nothing ‘wrong’ with our new little baby bundle.

I can totally see how at this stage, with no evidence to suggest EJ wasn’t going to follow the typical child development path, it wouldn’t necessarily have been appropriate (or indeed helpful!) to launch into the full complexity of genetics and confuse a couple of tired and anxious new parents.  However there was obviously in inkling there…..

…..and very gradually EJ began to collect more symptoms, including missing most of the typical development milestones, and her differences became more & more noticeable the older she got, and she began to stand out from the baby crowd.

The added complexity for us was that we moved NHS trust when EJ was 6 months old, so we had to start afresh with a new set of health professionals. Our GP notes of course would follow, but not instantly, and apparently notes and test results from hospitals don’t, they have to be requested specifically!

Thankfully we found our new GP surgery to be fantastically supportive and EJ was referred to our new hospital without fuss.

We then embarked on a very confusing journey of test after test, normal results, clear scans and more normal results.  Being passed from one department to another, in and out of hospital clinics and community services.

EJ sitting unaided at 18 months
EJ sitting unaided at 18 months

EJs symptoms (even her heart defect) could be related to ‘normal’ paediatric issues, so rather than being joined up, as they would more likely have been had she been diagnosed, were left feeling confused, even neurotic and paranoid about reading too much into things.  We didn’t really know what questions to ask or even who to ask…..

We were also left feeling guilty and worried that perhaps we had done something wrong? Being asked by every new clinic the same questions about her history, even going over and over how my pregnancy had gone – did I drink or smoke or take drugs in pregnancy? – is all pretty guilt inducing! We’ve even been asked several times if me and her dad are related! – I know these questions have to be asked, but perhaps once is enough….? Perhaps a clear crib sheet at the front of medical notes!?

And all the while (we had a lot to take in, so unless things were spelled out it may have washed over us!) I don’t remember anybody saying (given her symptoms) that it was pretty likely that EJ did have some form genetic disorder no matter what the results of the tests.  In fact I’m not even sure how many of the non medical professionals involved were aware that living with an undiagnosed condition is such a common state of being, sometimes not just a stage while you wait for meaningful test results (6000 children a year are born with an undiagnosed condition!)….I’d even hazard a guess that some may have suspected it was all in our minds…. as they (like us!), would have expected something to have come up in some of the tests EJ’d had.

The health, social care and early years education system can be complicated and confusing enough for anyone, but I think where having a child with an undiagnosed condition differs from those with known syndromes, even rare ones, is that without a ‘name’ you feel like you are constantly trying to convince people that there really is ‘a thing’.  Whether that’s a thing (as for EJ) affecting her sensory processing and in turn her development, or a thing linking a group of medical problems together. Many, like us, feel isolated, perhaps not feeling like you qualify to join ‘additional’ needs groups (but can’t relate properly with mainstream), don’t qualify for help, and that perhaps you are a fraud for taking up valuable NHS time?!

Many undiagnosed children have extremely complex medical needs, many from birth or even before they were born, so unlike EJ will have been ‘in the system’ from the beginning – but, from what I understand, this doesn’t necessarily mean care is better co-ordinated.  For many, one medical symptom will dominate, and that medical specialty might take the lead in fire-fighting that need, but they are not necessarily the right team to be investigating the cause and leading on the overall care of the child.

I really don’t mean any of this to sound critical of any of the individual people, teams or clinics involved, or indeed the NHS or social care. Far from it! Overall we have had wonderful care!  We really do understand the massive strain and funding constraints on the NHS and social care, and the limitations of working within a framework of approved techniques, medications and therapies.  However that’s not to say there couldn’t be big improvements in coordination of the care, particularly for patients with undiagnosed conditions.  More coordination could also bring more efficiency (and less frustration!) for all involved, freeing up those in the caring and medical roles to ditch some of the admin and get on with what they want to do, providing support, treatment, therapy etc

With many known syndromes there are often typical symptoms and treatments, and you’d be put in touch with key teams, relevant tests carried out and early intervention therapies begun from the start with a coordinating specialist overseeing the care.

With a rare condition a plan is less likely to be in place, but at least there is a focus, something tangible even if still confusing.  There is likely to be medical research going on, some interested specialists (which can never be the case for undiagnosed patients as they are all so different, we are all hanging around hoping to grasp at the coat tails of some identified condition).

Being diagnosed also gives you the opportunity to meet and engage with other families in a similar position, however few of them there are.  It’s such a human need to be able to share experiences with others who understand – which is why SWAN UK is so important to us undiagnosed families, because although we are all so very different, we do share challenges and the confusion of the unknown.

EJ now 5, practicing standing with dad
EJ now 5, practicing standing with Dad

EJ’s long list of symptoms don’t really help give a full picture of her condition since they can be attributed to many other known syndromes and ‘normal childhood issues’ which means that we don’t know what the future might hold.  In many ways I find this liberating, as there are no preconceptions about what her life and achievements will be.  However it also raises difficult questions – Will she walk (what adaptations will we need to make in our home)? Will she talk (will we ever be able to communicate)? Will she be able to live independently (how much support or not will she need – what happens when me and her dad are gone!?)? Will she develop any associated health problems? Will she have a shorter life expectancy (actually I don’t think I want to know the answer to this last question!)!!!?

Genetics is just so bloomin’ complicated!  We’re just at the tip of the iceberg in this area of medical research and, in the meantime, a long way to go to make sure it is acknowledged across the board that even if the tests don’t find an answer, it doesn’t mean there’s not a genetic glitch hiding somewhere, and that the family affected still needs the same level of help, support, treatment and therapies as those who are diagnosed with known conditions.

Last Undiagnosed Children’s Day a very exciting announcement was made for a new Roald Dahl SWAN nurse post at Great Ormond Street Hospital (there’s a great clip on this link of an interview with the super campaigner behind Just Bring The Chocolate about the new position).  And also since then two new specialist nurse positions at Birmingham children’s hospital for a rare disease specialist nurse and a genetics specialist nurse!  We in the SWAN community are holding our breath hoping these new roles will show the NHS just how much of a difference these coordinating speciast roles can make  – and hoping they can be replicated at all the children’s hospitals and major teaching hospitals….. no pressure new recruits!

In parallel it’s so important that awareness is spread generally, and among frontline professionals that will come into contact with new parents (midwifes, health visitors, SENCos etc), that being undiagnosed is actually a ‘thing’ and that there is help and support out there in the form of SWAN UK!

This blog post forms part of an amazing series by SWAN parent bloggers for Undiagnosed Children’s Day 2016.  Check them out via the blog hop link below!

And if you can, please support the work of SWAN UK via their website