Accessibility Stories 03.17

a rusty key with #accesslinky written below

Thank you so much to all those who linked up last month, loads of great posts!

This month I’ve decided to change the hashtag, for sharing on social media, to something a little shorter and easier to spell! ….#accesslinky

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

 Round Up from last Month

The 1st March was International Wheelchair Day! Ordinary Hopes wrote this lovely post, Wheelchairs Are Awesome, about the massive difference a wheelchair makes and the independence they enable.  Brody, Me and GDD also wrote a more reflective post about coming to terms with your child needing a wheelchair and, more so, coming to terms with the Reactions To my Son’s Wheelchair from other people.

It was also Disabled Access Day on 11th March, which saw a lots of events throughout the UK over that weekend and disabled people and their families and friends were encouraged to try getting out to somewhere new!  I have to say we fall into exactly the category of sticking to tried and tested places, or places relatively close to home, as we have the same issues as Brody, Me and GDD discusses in this post… Raising Awareness of Changing Places Toilets this Disabled Access Day!

Challenges in getting out and about are not only, or always, physical as Rainbows are Too Beautiful’s post The disassembled abandoned cake – autism eating out and about illustrates.  Sensory barriers to access, or sensory overloads, can be extra problematic when there’s no visual cue, people around you don’t often understand or react in a helpful way.

I also linked up a post myself from a local project I’m involved with for a new unique playground, a playscape! I’m really excited about it as one of the core aims is to create an inclusive play space that people of all ages and all abilities will be able to enjoy! By designing unique elements, there’s no prescriptive way to use them, so we are hoping people will access them in the ways that they can!  Perhaps this can be a destination for some in future Disabled Access Days!? …..we have yet to solve the access to a loo problem, although no equality issues here, there’s no public toilet for anyone at the moment!

The lovely Little Mama Murphy linked up a very exciting update in the #BigBuild4Hugh!  Their adaptations project is almost complete and the family were able to have a proper inclusive family christmas due to the new layout!  Loving the enthusiasm for good storage… you can’t beat a good cupboard!

Finally I’d like to mention this poignant post by The World of Gorgeous Grace, My Learning Disabled Child is not a Burden on Society.  Attitudes to disability are changing, and when you look back we have come a long way in a relatively short period of time, but we still have a long way to go before we are ‘there’.

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

100 best disability blogs

Thank you so much to Stairlifts Reviews for including my blog in their 100 Best Blogs for Disabled People and Carers!

I’m in great company in this selection, with many of my own favourites, including: Down’s Side Up, Steph’s Two Girls, Special Needs Jungle, JBOT and Words I wheel By!

Some of the more well known charities & disability organisations (like Scope & Disabled Go) are also listed, as they have great blog posts, often by guest writers with personal stories or professional advice.

And many more (new to me) blogs to follow too!

Stairlifts Reviews 100 Best Disability Blogs

Mother’s Day Interview

On the run up to Mother’s Day, the fab Mum on a Mission has organised an interview exchange among a group of  fellow SEND bloggers!

So, I would love to give a warm welcome to Beth of Little Lydia, whose interview is posted below…..

Plum tree blossom

Introduce yourself

Hi I’m Beth, I’m the wife of David. I’m also the mother of 2 crazy girls.

My eldest (I’m not allowed to call little any more) is called Caitlin, she’s 8 and is AWESOME! She is into anything and everything. Last weeks favorites were trampolining, painting and coding games. This week its Lego and crochet (did I mention it’s only Monday).

My youngest is little Lydia, she’s now 16 months but I think this is forever going to be her name. Lydia was born with a condition called Dandy Walker syndrome, apparently its extremely rare.

A couple of Neurosurgeons from Cardiff felt that they could play God with Lydia’s life and she had surgery at 10 days old, as a result she developed meningitis and sepsis. This then led to hydrocephalus which couldn’t be managed for months. She was airlifted to Liverpool after making the front page of our local newspaper to have corrective life saving surgery and in one operation had a huge cardiac arrest which in turn has caused significant cerebral palsy. We have since been told the first operation was probably not the right thing for her.

This last 16 months has been a complete whirlwind of highs and lows, life and nearly death. HOWEVER Lydia is at home as I type this she is grunting at her Dad because he’s watching football and he has ignored her for more than a few minutes – how rude! She’s definitely communicating and is full of life. We LOVE having her home and being together. She’s our miracle, a gift from God and we wouldn’t have her any other way (apart from being free of all the medical issues).

What piece of advice would you give to another Mum in the same circumstances as you?

If I had to give one piece of advice it would be to never give up, don’t let anyone feel that they know your child better than you. If anyone wants to do tests in any shape or form don’t be afraid to ask what they are doing and for what reason. You are your child’s biggest and only advocate. No one will stand up for them like you and if you know something isn’t right don’t ever feel like you are being bossy or an inconvenience.

Doctors and nurses have a duty of care but that doesn’t mean they DO CARE for your child. I’m not being disrespectful but for so long I was made to feel that because Lydia had complex needs and they were experts in their field that they knew what was best for her when in fact they didn’t, I did.

It took me a long time to get my head around all the medical terms, it felt really intimidating and isolating. I read loads especially about Dandy walker syndrome, I still read loads but I also know Lydia really well now. I know her patterns and behaviors and when we go into hospital its me giving instruction about what I think is wrong.

If you aren’t being listened to ask for a second opinion. It is illegal to refuse a second or a thousandth opinion.

What’s the best piece of advice another Mum has given you?

The best piece of advice another mum has given to me, has to be from a good friend of mine. She is an amazing mother. Her kids are some of the kindest and best behaved children I’ve met and she has 5 of them! She said never be afraid of saying no, either to your children or other parents or even grandparents. Providing its done out of love and for the best reasons. If you think something isn’t right for your child say no and stick to it. Also don’t be afraid of what others think if you do say no, they are your children.

I saw her saying no to one of her children once. I cant even remember what it was over but she said it very calmly but directly. He shrugged and walked off. NO FUSS… NO TANTRUM!!! I was like…. How did you get him to do that…? Gob-smacked! She replied so calmly and graciously – he knows when I say no, I stick to it. Fair enough it works, it took some doing and sticking by. Accompanied by a ton of guilt and crocodile tears. It’s not always a tantrum free zone because, lets face it kids are kids. But Caitlin now accepts (generally tantrum free) if we say no its no, regardless of who is present. #winning!

What one thing did your mum always used to say to you which you have found yourself repeating since becoming a Mum?

My mum always used to say and still does, just take one day at a time. I say this A LOT now.

Who would play you in a movie of your life?

I would love to say Rachel McAdams, I love her.

What are your plans for Mother’s Day this year?

My plans and prayers for mothers day this year are to be hospital free and the whole family to be in good health. Anything outside of that is a huge blessing to us.

If you could go back to the beginning, what would you tell yourself as a new Mum or as a Mum of a newly diagnosed child?

If I could go back to the beginning of my journey as a mum, I would tell myself to stop worrying so much on what others think about anything. That their opinion doesn’t count for anything.

I would tell myself to give me a break, it’s ok to have a nap and not be dressed and made up all day every day, its ok for the kids not to have a room FULL of toys and stuff because all they want is time. Precious time.

I would tell myself that a fancy house, a fancy job and fancy clothes don’t count for anything when your child’s health is at risk. Enjoy the little things.

What is the biggest battle you’ve faced as a Mum?

The biggest battle I’ve faced as a mother is getting others to listen and respect my daughter Lydia.

She is a person not a neurological condition. Not a mistake. Not a regret. She’s a person in her own right, with her own mind and her own personality which we are to respect and accept.

zzI have had to see her on life support more times than one should. I’ve also seen her have a cardiac arrest, which no mother should ever have to witness. She has been through way more than the average child or human has ever been through and she deserves the right to be acknowledged, appreciated and loved as Lydia. Perfect the way she is.

If you were PM for the day what would you change to make life easier for Mums of disabled children?

If I was PM for the day, I would scrap the age limit on DLA mobility. You either need a car for mobility purposes or you don’t. There shouldn’t be an age limit.

We currently don’t own a car, we have to borrow my parents to get back and forth to appointments, which is at least three times a week. I have to push Lydia to the car, take her out of her wheelchair still attached to oxygen wires on the wheelchair and a feeding pump, again wires attached to her face that lead into a bag that feeds her. Then position her properly – she cant support her head properly by herself yet. Then take the suction machine from the wheelchair and place it into the car followed by her feeding backpack and oxygen backpack. Clip her in her seat, before taking the wheelchair to the back of the car and having a full on fight to take it into 3 parts which is not only complicated but extremely heavy, especially in the pouring rain! After all that I then have the delight of a free but frequent game of tetris to fit it in the boot in a certain order or the boot wont close. All because Lydia is small enough to carry without needing mobility!

I would also like to see changing places pretty much every where!

I would make it legal for specialist doctors and consultants to perform surgeries on children privately in the UK without all the red tape. Some children need expertise from world specialized consultants but are too poorly or vulnerable to travel to the needed care. Therefore provided said consultant has all the right certification and the parents were willing to pay privately then that consultant should be able to perform or treat the child as needed within the UK.

What’s the best thing about being a Mum?

The best thing about being a mum is witnessing all the firsts.

The first bath, the first time leaving hospital, the first smile.

Caitlin’s 8 now and it still doesn’t get old. She managed to skate the length of our garden all by herself a few weeks ago. It was amazing, she was so chuffed with herself and I was so happy that we stuck it out with her.

It really is a great day whenever one of the girls get a first. It makes all the hard work worth it by a million times.

Funniest moment as a mum?

My funniest moment as a mum… that is impossible to say I live with a comedian of a husband and the kids follow suit. They are very much Daddy’s girls. Caitlin has great one liners, which are hilarious. Even listening to her laughing makes me howl with laughter. Lydia pulls the funniest of faces and pretends to sleep if she doesn’t want to partake in conversation with you.  A particularly funny time was at Christmas when I let Caitlin decorate the tree and found Lydia covered in silver tinsel and a big bow on her head happy as Larry!

Who are your favourite Mum bloggers?

I don’t have a particular favorite mummy blogger. I read a range of blogs depending on my mood and where the kids are at.

I do have a keen interest in reading blogs about accessible places and what works for both of my girls.

Also if I’m struggling with a particular thing I might go to pinterest and see what other mums have to say about it. I find that others mums and their experiences (especially medical ones) have a much deeper understanding and better handle on giving great advise compared to a person in a paid role with no real hands on experience.

What is your life motto?

“The Lord is in control. This is exactly where he wants me to be right now”

Finally, if you won the lottery today, what’s the first think you would buy?

I would buy a car and adaptations for my home.

After that I would spend the rest of the money on research into a cure for Hydrocephalus. It’s a very complex condition with no research in the UK. 400,000 neurosurgeries a year are for shunts to manage hydrocephalus. Shunts only have a 50% success rate and many people have to keep having repeat neurosurgery because there is currently no cure.

I would like to change that, not just for Lydia but for all people.

You can find Beth’s blog, and follow her on social media, here: 

Blog URL: www.littlelydiablog.wordpress.com
Facebook: littlelydia.co.uk
Instagram: Bethsworld101
Pinterest: bethsworld101

Rare but not alone

Global Genes Day graphic with EJ's photo in a heart shape, tag line: I love someone rare

We are members of SWAN UK, a fantastic support network for families of children without an overarching diagnosis for their medical conditions and/or disabilities, support for families of those with a Syndrome Without A Name.

2 year old EJ sitting on a play mat, wearing pink and blue for undiagnosed children's day 2013
EJ wearing pink & blue for her first Undiagnosed Children’s Day, April 2013!

We didn’t find SWAN (run by the charity Genetic Alliance) until EJ was 2 years old, when we found a leaflet in our enrolment pack for the DDD study.  Until this point all the standard NHS genetic tests available had drawn a blank in identifying any particular reason for her developmental delays and we had felt pretty confused and alone.  (You can read a bit more about this uncertain time here and here.)

The DDD (Deciphering Developmental Disorders) study is a far more detailed method for genetic testing than the NHS can offer (which coincidentally is being carried out just down the road from us at the Sanger Institute in Cambridge!), using new technologies to try to identify particular gene changes responsible for developmental disorders.

“Instead of having a targeted test for a particular change, we therefore have to look across all of the child’s genome to find out if and where a change occurred which caused the disorder” – www.ddduk.org

This analysis of the whole genome can take some time…..

…. and in the meantime we have become quite comfortable being part of our big ‘SWAN’ family.  We’ve found help, advice, comfort, true friends and love in our extremely diverse community, and have celebrated Undiagnosed Children’s Day at the end of April each of the 4 years since we joined.

However this year is a little different.

And I’m actually writing this particular post to coincide with another awareness day, Rare Disease Day, because (quite out of the blue as we’d almost given up hearing anything at all!) we received a letter via EJ’s geniticist that the DDD study has found a gene change that is the probable cause of EJ’s disabilities! So, quite unexpectedly EJ may have become a ‘graduate’ SWAN (although I am relieved to say that graduate SWAN families are most welcome to remain part of the big SWAN family – phew!)!

Global Genes Day graphic with EJ's photo in a heart shape, tag line: I love someone rareOf course you are always advised to steer clear of Dr Google, but when it’s been 5 years since investigations began, you kind of can’t not google!? And also, when you are dealing with something so rare, and so new, there’s almost as much information out there in the hands of Dr Google as there is available to the medical professionals (granted I’m not quite as qualified to interpret it all as the real doctors!)!

I’m not sure if there is a right way to give a family a diagnosis, especially such a long awaited one.  I’m not even sure if this counts as a diagnosis as such? Too fledgling a discovery even to have a name, other than the gene name, KAT6A.  We were told via letter, which may sound a bit blunt to some, but I think I would have worried myself silly having received a more cryptic letter asking us to attend an appointment at a later date, or a telephone call, which always seem to come at an awkward time.

I think it probably depends on the news.

The information we were given was not frightening to us. Internet searches of EJ’s gene glitch brings up almost an exact list of the symptoms we already knew about for her.  I think if there had been more worrying symptoms listed I might feel differently, and perhaps the news would have been delivered differently?

After Dr Google, our next move was to check Facebook to see if there were any other families out there, and, lo and behold! There are!  So far, around 70 (mostly children) all across the world, including a few others in the UK, who have disabilities almost exactly like EJ!  Some of the families have even gathered together the information known about the KAT6A gene change on this new website!

I’m not yet sure how much difference having this information will make.  In some ways a relief?  We may learn some useful things through research into the gene change… issues around health? Perhaps improved strategies to help EJ reach her potential?

However the loveliest thing about the diagnosis so far is finding those other families, and also discovering some of the ‘behavioural traits’ linked to the condition are ones that we know & love!….

A happy demeanour! Always smiling, loving cuddles, giggling and laughing often!

And so it seems we are embarking on another stage of our journey….. but always thankful to have our SWAN family travelling with us!

Accessibility Stories 02.17

A rusty key with title "Accessibility Stories 2017 Linky"

Thank you so much to all those who linked up last month!

Round Up from last Month

At this time of year many of us are thinking about booking our summer holidays, however for families with physical and sensory access needs, staying away from  home can be stressful! It was lovely to read this positive holiday experience by Rainbows Are Too Beautiful.  Particularly interesting for us as both my kids love being outside, especially EJ who thrives on the immersive sensory experience nature provides (the light and shade, the feel of wind and rain, the differences in sounds, smells and even tastes) so a forest holiday would be ideal for us, and a holiday home with a safe outside space would be perfect!

A rusty key with title "Accessibility Stories 2017 Linky"A few of the posts last month were about how just getting out of the house can be a mission, never mind going on holiday!  In this aptly named post, Project Get Out of the House, Orange This Way determines to start a new #wheelygood resource for Devon and Cornwall to help visitors and locals alike to find wheel friendly places & activities!  In Where Were the Good People, Ordinary Hopes asks why people stand by and allow others to struggle, and even become victims of bullying behaviour, sometimes in circumstances where a little thoughtfulness or a kind gesture could easily make all the difference.  While on the other hand, Raising a Superhero tells of a lovely Christmas outing where inclusion was at the heart of the experience and is definitely an Afternoon Tea with Father Christmas I’ll be looking up next festive season!

Accessible toilets is a favourite theme, well, when I say favourite theme I agree with Ordinary hopes in her post Petitioning for What?, in that we shouldn’t even need it to be a theme for discussion (…please do sign the petition though!)!  However on reading this update by Mum on a Mission about her an ongoing correspondence with Cineworld it’s pretty clear that we do need to continue to lobby for greater clarity of standards, as the big service providers still seem to believe the guidance doesn’t apply to them!

On the positive side for loos, it was great to read this fantastic guest post by Brody, Me and GDD about changing places toilets on Mumsnet, with loads of fantastic comments, many from people who hadn’t heard of the campaign before – it’s always brilliant to reach and gain support from people not directly affected by the issues!

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.
AccessibilityStories

Not enough space?

Hand sketch of a changing places toilet in the proportions of a car parking space, overlaid on a photo of a car park

Quite often, when discussing changing places toilets with new people, the size of the room comes up, and often becomes a bit of a sticking point!

To be fair, in isolation, at 12 sqm a changing places toilet does sound quite large, particularly if you are comparing it to an individual toilet cubicle, or even a standard accessible toilet.  But then that’s one of the main reasons many people need a changing places toilet rather than one of the other type of toilets, simply because they can’t get in to the smaller rooms!

(Follow this link to a post I wrote previously about how accessible the average accessible toilet is).

When people get stuck talking about the floor area a changing places takes up, it sometimes feels as though they forget that all toilets take up floor area (and cost money to install!) – even the inaccessible ones!  But they do take up space, and quite a lot of it!  If you visualise a standard women’s toilets for example, the cubicle is just one element, there’s also the space needed for the vanity unit, with bank of wash hand basins, and the circulation space in between the two.  And then you’ll also have the mens loos, at least one standard accessible toilet (hopefully!) and perhaps (depending on the building type and location) a baby change or family room too, which is often a similar size to a changing places toilet!

All those other toilets have limited access, whereas a changing places toilet, is very accessible!  Changing places toilets are generally considered the add on, taking up extra space, but I think we are looking at things the wrong way round.

If there’s only space for a few toilets in a venue, why not start with the most accessible and add the least accessible rather than the other way around?

I’m a bit of a numbers geek, so I decided to try and think of spaces that people know really well, to help visualise the area required by a changing places in context with something familiar, and, do you know, one of the simplest of things many of us use everyday is, give or take 0.5 sqm, exactly the same area as a changing places toilet!?

A car park parking space.

Hand sketch of a changing places toilet in the proportions of a car parking space, overlaid on a photo of a car park

Not a blue badge space, or an on street parking space (which are actually a bit longer) or even the slightly more generous kind that some car parks now provide to accommodate bigger modern cars…. nope!…. a totally bog standard (excuse the pun!) minimum size car parking space is 2.4 m x 4.8 m, which is 11.5 sqm in area!

A space most of us take for granted.

Car parks occupy massive amounts of space (sometimes in multi-storey structures or excavated basements underneath buildings which involve reinforced structures, car ramps and all sorts of expensive engineering just to enable us to leave our cars occupying a space while we’re not even there!)!  …. so when the reason given for not installing a toilet in a building or venue (a toilet that most people could use!), is lack of space, I really have to wonder…!

P.s. The above graphic isn’t about adding changing places toilets into car parks, its a comparison of the size of a changing places toilet in context with the size of a space we are all very familiar with!  However it does bring to mind the image of those mobile toilets provided in trailers for temporary events!   So if you are organising an event, please do take note that a changing places toilet does fit in a trailer too, and there are a couple of suppliers who can provide mobile options that you can hire to make your event truly accessible!

 

Accessibility Stories 01.17

A rusty key with title "Accessibility Stories 2017 Linky"

Happy New Year!

A rusty key with title "Accessibility Stories 2017 Linky"

Welcome to the first #AccessibilityStories of 2017!

Apologies for the lack of linky last month, too much going on at Christmas I’m afraid!

My lovely campaigner friend at Ordinary Hopes linked up a couple of posts to my last linky, in November, which are particularly topical as this year has begun with quite a flurry of media interest in accessible toilets!

The first is a Christmas post, The C Word, highlighting how the lack of suitable toilet facilities, meant that her family couldn’t participate in many of the festive activities that many others take for granted.

The second, Struggling to Care, a poignant post setting out what really makes caring for a loved one difficult.

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 below and add it into your blog post while in ‘text’ mode of your blog editor) or 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.
AccessibilityStories



Every day is a broken toilet day

changing places selfie with BBC Look East reporter & cameraman

Well 2017 has begun with a lot of talk about accessible toilets!

I’m so, so, thankful for Anne Wafula Strike speaking out about her horrible experiences due to lack of accessibility on the train.  A culmination of various things, a lack of facilities, a broken toilet, lack of independent access to and from the train, lack of assistance when needed…. lots of layers of accessibility fail.

changing places selfie with BBC Look East reporter & cameraman
BBC Look East changing places selfie

The fact that this has hit the media is fantastic news to me and fellow campaigners, as so many people live similar problems everyday, and I wonder if maybe we’re seeing part of the solution – accessible design – moving into the mainstream forum?!

Toilets of course are not the most glamourous aspect of building design, but, unless you are just whizzing through, they are pretty fundamental to access.  If you go anywhere to work, eat, drink, watch a show or a movie, view some art…. you go there assuming there will be somewhere to go to the loo.  I’m not a big fan of a public loo, but I know I would be quite anxious if there weren’t any available!

I can remember once going to a restaurant (a very small one in London) and when we got there we were told all the loos were out of order, but they had made an arrangement with the pub a few doors down, for customers to use the loo there. A satisfactory short term solution!? But it did feel very odd to leave the restaurant, and your friends, mid meal and go out onto the street!  I remember silly things going through my head, like should I put my coat back on? Take my bag and/or phone?

I also wonder now, would I have gone if I had known that would be the arrangement? Would I return somewhere if it was?

Fast forward a few years (or 10!) and this is now our everyday scenario.

My daughter J is 6 and my son W is 3.  J has developmental & sensory disabilities which mean that she is a wheelchair user and also has continence issues, so wears pads (nappies).

Every day is a broken toilet day for her.  Which means that, if we are out together, then every day is a broken toilet day for all of our family.

Anne Wafula Strike’s experience tells us that there are not enough accessible toilets, or in some circumstances the way to get to those toilets is inaccessible, (e.g. when you’re trapped on a train due to lack of ramp, you can’t just hop off to use one at the next station!) however, even when there is an accessible toilet available, it’s extremely unlikely that we’ll be able to access it.

The typical accessible toilet is designed with a whole host of different disabilities in mind, but the position of the fittings is predominantly to enable independent wheelchair users, those who can stand, weight bear or have the upper body strength to transfer from their chair to the loo.

But what if you can’t transfer on your own to the loo or what if (like J) you need a pad changed and cannot stand up to have it done?

Until recently W had the same toileting needs as J does now, and most places we visited as a family provided exactly the facility he needed.  A changing table.  And, as he was only 2, he fitted perfectly on the changing tables we found.  J is 6.  J hasn’t fitted on a baby changing table for some time, and even if there was a bench large enough to lay her on, she’s also getting to the stage where she’ll be too heavy to transfer without a ceiling hoist, a stage that many many older children and adults are at now.

changing benchceiling hoistIt’s estimated that accessible toilets are inaccessible to at least 1 in 260 people.

There is one toilet in our city centre (Cambridge) that we can use. Only one registered changing places toilet.  In fact we did a little bit of filming with the BBC Look East in there last week! Oh, the glamour of TV!

It’s the only toilet in the city centre that isn’t ‘broken’ to us – but, brilliant as it is to have it available, it’s not in a location you would go.  The only way to get to it is to leave the place you are visiting, eating, viewing and walk to the shopmobility office in a shopping centre car park.  In fact, I do not know of a single place we could go in Cambridge where the toilet is accessible to us.

I’m really keen to understand why there’s not a greater range of facilities in more places. A more inclusive provision in  buildings that people go to, places that people visit.

So if you’re in the building design, construction or management industries I’d be really grateful if you’d complete and share my survey to help me gather views on the accessible toilet guidance available, and any improvements that could be made in design and legislation. (Edited to add: Survey now closed)

I’m looking for feedback from people in all sectors of the building industry, whether you have specific experience or expertise in accessibility or not (in fact the wider the range of experiences the better!).

 

Accessibility Stories (Nov 16)

Rusty old key in a door lock

Thank you so much to everyone who linked up with #AccessibilityStories last month!

Collage of pictures of smiling children how need changing places toiletsThere has been much discussion within our campaign group about why the need for Changing Places toilets has not really reached the conscious of the general public and, when it does, it’s often misunderstood as Brody Me and GDD describes in Sorry for the Inconvenience.  Of course the official Changing Places campaign has made huge headway (from zero provision!) in it’s 10 years, but at still less than 900 toilets in the whole UK, we felt that perhaps us independent campaigner bloggers could shake things up a bit more if we got together!

So at the end of last month Brody Me & GDD rallied a group of bloggers to publish a wave of posts about the lack of fully accessible toilets, in the hope that a surge of posts, coming from a range of perspectives, might break through the social media noise and reach new people.  And I think we succeeded, at least to some extent!

The name ‘Changing Places’ can be a bit confusing and abstract from peoples lives.  Having a mix of parent bloggers, who don’t normally write about toilets (well some of them do, but maybe not always about changing places!), might make the story more relatable to people who don’t need them.

We decided on Halloween as a date to publish and decided on the theme of #phantomloos (as standard accessible WCs just being an illusion of accessibility to many of us!).

Many of the bloggers hooked up to last month’s #accessibilitystories and there are so many amazing posts I figure it’s just better if you hop over there and have a browse!  I’ll just pick out this storyboard style post by Little Mama Murphy which gives such a clear description of what we are talking about and why, that surely it’s just obvious there should be more changing places!  You can also check out this #PhantomLoos storify a try to capture the mood around the hashtag on twitter.

The most exciting thing to come of the flurry of activity was that a BBC journalist contacted a number of us who had taken part as she was writing up this fantastic article, When does accessible not mean accessible?, published last weekend, on #worldtoiletday!

The linky wasn’t only about toilets though!

Rainbows Are Too Beautiful linked up this beautiful, balanced and heartfelt open letter to Tess Stimson in response to an article she wrote about ‘disruptive’ behaviour in public places.  Rainbows Are Too Beautiful explains how precarious it can be as a family trying to walk that line between tolerance and intolerance and how the limitations society places on what is acceptable can deny people access to typical family life. Have a scroll through the comments to see a thoughtful response from Tess Stimson herself.

And finally A Hunter’s Life posted a great list of their families favourite products! I’m always excited to share great inclusive product ideas, especially those (usually the mainstream products) that don’t come with the higher ‘special needs’ or ‘disability’ price tag!

The linky for November 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)!

Rusty old key in a door lock

Guidelines:

  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.



Why should we?

Changing Places toilet selfie

Why should we install a changing places?

I can understand that many people have not heard of Changing Places toilets. I understand there’s a valid argument that venues just don’t know about them.  However once they do know….?

I worked in architectural practice up until 2010, just after the guidance was entered into the British Standards (BS 8300), and I honestly hadn’t thought about the building regulations ‘standard unisex accessible WC’ not being adequate for all disabled people.  Don’t ask me how I didn’t know as it seems so obvious now, but it just hadn’t occurred to me what people would do if they couldn’t get onto the loo on their own ! How could someone help to lift them in that little room and without any hoisting equipment!?  And what if you were not a baby (maybe you’ve not been a baby for decades!), but wear an incontinence pad and need assistance to change it? Where would you lay down?

Changing Places toilet selfieIt wasn’t really until my daughter was growing too big for baby changing tables that I began to wonder if I was missing something, and of course when I began to look around I found the Changing Places campaign.  A campaign that had grown out of the frustrations of a determined bunch of parent carers deciding to take action about this lack of provision.

I was excited to find that they had secured a pretty comprehensive entry in BS 8300, recommending the type of buildings these facilities should be installed in.  And there is also reference to this BS guidance, and to the Changing Places Consortium, in the Building Regulations relating to building accessibility (Part M).

However it soon became clear there really weren’t that many of them actually installed.

Ok so it’s a new standard?  There will be loads in the pipeline right?

Now that the need has been identified and quantified in BS guidance, there will be lots of new buildings automatically including them, and lots of existing venues will start installing them…. right?….right!?  Erm….no, not really.

Over the last year or so I’ve gotten to know a number of campaigners pretty well, several of them are fellow SWAN UK members with children with complex undiagnosed conditions, some have older children and some are adults who need the facilities themselves.  Unfortunately their experience has been negative on the whole.  Of course there are some exceptions and some lovely positive stories of venues, on hearing of the need, step up and even enthusiastically take steps to ensure a changing places toilet is installed in their new building or refurbishment.  Some see the benefits of inclusion straight away without much, or even any, persuasion.  Two such projects that spring to mind are Longdown Farm and Cornwall Services – both fantastic examples of how it should be, how I’d have expected it to be.

However the far more frequent response seems to be: “not our responsibility”.  Even when confronted with the fact that their disabled customers & carers have to leave early, risk falls & back injury, lay on toilet floors or even not come at all, the fact that changing places are not compulsory, that there’s no minimum requirement to cater for ‘our kind’ of disability, means that venues see changing places as an extra. Something over and above what they need to provide.  Their competitors haven’t had to do it so they don’t want to be the ones who have to spend the extra money.

I have to say I have a little sympathy for this.  The changing places standard is significantly bigger than designers and developers are used to as an accessible toilet, and of course floor area = cost.  Without clarity of who should install them, and in this financial climate, I can sort of understand individual organisations backing away from responsibility.  My feeling is that there should be a review of the whole ‘suite’ of sanitary facilities we have in our regulations as minimum standards.  I think there’s opportunity to have more inclusive options, for smaller family friendly venues for example, where perhaps the adult and baby changing areas are not put in separate rooms but a single family toilet area is installed, so the room will be used by a greater number of customers and business’ will feel there is more ‘value’ in if for them? But that’s another blog post I think!

As I say, these facilities seem to be viewed (by most?) as an ‘extra’, as something for a minority and not their responsibility to cater for, so thought I’d look at some figures I could find online which (I think!) illustrate clearly that’s not the case (although even if it’s just one person that’s being excluded, isn’t that one too many!?).

The Changing Places Consortium website tells us there are over ¼ million users in the UK who need a greater than the average accessible toilet, in a population of 65.1M (ONS).

So that’s (at least!):

1 : 260 people

1 in 260 may not sound like a huge number of people on first glance, but just to put that into a bit of context, here are some building venue capacity stats:

Blackpool Tower Ballroom (who do have a changing places toilet I must add – #IncLOOsion!) can accommodate:

  • 900 people for a banquet (statistically 3.5 changing places users per banquet),
  • 550 for a dinner dance (statistically 2 changing places users per dinner) ,
  • 1100 for theatre performance (statistically 4 changing places users per performance).

Wembley Stadium (who, again, do have a changing places toilet) has:

  • 90,000 seats (= statistically 346 people per match needing CPs)
  • 2,618 toilets (including 1 Changing Places Toilet!) in this one (granted, very large!) venue, yet there are only *895 Changing Places in the WHOLE UK!

For an area with such high density of entertainment & tourist venues, the west end of London has particularly poor provision of changing places, and I don’t mean to single out these two over any other (because they ALL should have one) but, for example:

The Royal Opera House auditorium seats:

  • 2,256 people ( = statistically 8.7 people/performance needing CPs)

The Odeon at Leicester Square has:

  • 1683 Seats (= statistically 6.5 people/screening needing CPs)

So, some of my questions to businesses who are questioning whether they should have better accessible toilet facilities in their building or venue are:

  1. Do you have toilets for your other customers? Why would you expect our family to leave your venue to find a toilet somewhere else when you don’t expect other people (who are most likely more mobile!) to do this?
  2. What is the capacity of your venue? If it’s greater than 260 people, then statistically at any one time there may be someone who needs a changing places toilet using your service.  And they are most likely to be there with friends and family (or often at least a carer), and if they have to leave early, they’ll all leave!
  3. Do you see yourselves as an accessible building/venue? Then shouldn’t that accessibility extend to all users?

I’m not suggesting tiny coffee shops should be expected to provide fully accessible facilities (although of course that would be lovely and very inclusive!), and perhaps some people may say I am too close to the issue to see it objectively, but I am really struggling to understand why there is any debate as to whether meeting this need should become a minimum requirement in larger publicly accessible buildings, ones that provide toilets for everyone else!

*total figure in November 2016