disability – Page 2 – the inclusive home

January 10, 2017February 3, 2018

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.

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.

It’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!).

November 24, 2016January 11, 2017

Accessibility Stories (Nov 16)

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

There 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)!

Guidelines:

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;
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!
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!
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.

November 20, 2016November 19, 2017

Why should we?

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?

It 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:

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?
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!
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

September 18, 2016February 17, 2017

Let’s stop obsessing about 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 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!).

The 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 6^th 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.

March 19, 2016February 17, 2017

kidz to adultz

Last week we had a ‘family day out’ to the Kidz to Adultz in the Middle exhibition ( #K2A ) at the Ricoh Arena, in Coventry, run by Disabled Living.

It’s a bit of a trek for us (about 1.5/2 hours), but there just isn’t anything else quite like it closer to home (…..if only there was a Kidz East – hint hint!!).

It’s a little like an Ideal Home show for mobility and independent living equipment, gadgets, accessories & services! – an opportunity to see (and try!) a whole load of equipment and products that you can normally only trawl though google to find (from sensory toys to motability cars). There are also stands from loads of support and funding organisations and charities, and clubs doing demos of activities to try out (wheelchair basketball, music groups….).

It’s the 3rd year we’ve been.

On our first visit, Twinkle was just 3 years old and we were just beginning to grasp the extents of her disabilities and getting a feel for what support she would need. That 1st visit was really just a reccy, we didn’t know what to expect or what we’d get out of the day. It was a bit overwhelming at that stage and we were pretty unfocussed, but we did find it really informative and it opened our eyes to the range of products and services available. This year and last we were more prepared and went along with a few specific priorities, in addition to a general wander around to pick up new info and ideas.

This year our focus seemed to be ‘getting out and about’: off-road wheelchair/buggies, walking aids and bikes.

Twinkle does already have a walking aid, but she has a tendency to lean into any support that she’s given and so she likes to swing & hang in the harness of the one she has, and hop along rather than step. I’m not sure we found an ideal alternative at the show, but we did get a better idea of the variety of options, and tried one that seemed a better style for her, so we’ve arranged for the supplier to come and meet her physio and see where we go from there. This is something that may be funded for her (on loan) by the Local Authority, to replace the one she has, for use at home and school.

EJ does also already have a buggy on loan from wheelchair services, and has in fact just been reassessed for a new wheelchair (which we hope to have in a few weeks time!). Her new wheelchair should be great for day to day use, giving her the correct postural support and designed for use in a wheelchair accessible vehicle, however it’s not something that we can use ‘off pavement’ for walks on uneven paths in the woods – and EJ LOVES going to the woods and being in the natural (sensory) world. We are therefore interested in seeing what options are available for a ‘recreational’ chair. The Rolls Royce of all-terrain chairs seems to be the Delichon, and we did love it! Especially as it can also be used as a tagalong with a bike (so it hits 2 of our 3 targets!)…. but it’s a little (erm…a lot!) on the pricey side (!!!). It was fantastic to actually see it, for EJ to try it, and for us to push it, and will give us food for thought about whether it’s something we want to pursue for her.

And that brings me onto bikes. I had a lovely chat with the lady at the Cycling Projects stand. A fab charity who support various centres across the UK to run cycling sessions for people with special needs and disabilities. As a family we love cycling and we currently have a mainstream family trike (a Zigo Leader). However EJ will be outgrowing the trike in a year or two and, as we’d love to continue to cycle as a family and also (if possible) cycle to commute with EJ to school, we are starting to gather ideas about what biking options we have for the future. Cycling Projects have a wealth of knowledge about adapted bikes and gave me some new ideas to research, plus suggested I get in touch with their local partner centre to try some of their bikes and help us fine tune our specification – something I’ll definitely be following up!

It was lovely to meet in person some contacts at various stands that I’ve come across and ‘met’ online, with who share my passion about finding, designing and/or developing inclusive & accessible products with style! I’m hoping to keep in touch with, and perhaps meet up with, a few of them over the coming months.

We also swung past, said hello, had a quick photo op and acquired a balloon from our lovely friends at SWAN UK – the fantastic support charity for families of children with undiagnosed conditions (like our Twinkle!).

I did however manage to miss all the seminars – including one on adapted housing that I’d really hoped to attend! Too much to see, combined with keeping two small children from getting too bored makes time fly!

In order that me and EJ & EWs Dad could split up at times (and incase I did actually manage to go to the seminars and leave Dad and the kids in the main hall) we brought our buggy board for EW. The buggy board is one of my ‘finds’ from posting something like “How do you getting about with child in a wheelchair and a younger sibling?” to the goldmine of information that is an internet forum of parents of disabled children! I had loads of great suggestions (including baby and toddler carriers which are another of our go to options), but we loved this buggy board. It’s a Junior X Rider which has a little removable seat attachment and an adjustable connector which allows it to fit to different styles of wheelchair/buggy. We had quite a number of looks and several people came over an asked us about it – reinforcing to me that there’s definitely a need for spreading the word about good inclusive and accessible products!

A tiring but definitely a worthwhile day out!