Slightly Invisible

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

If only it meant all wheelchair users.

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

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

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

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

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

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

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

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

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

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

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

Spectrum Sunday
Mummy Times Two
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8 Comments

  1. Karen England
    June 23, 2017 / 12:48 am

    Businesses covering their eyes does not make us disappear. We should not have to fight so hard for basic necessities. Until the government pulls its finger out and gets behind us (ensuring changing places are installed whereever they’re needed) there is no dignity for our loved ones! So we continue to fight in the vague hopes that one day we won’t have to – we will be able to rest and enjoy….

  2. June 26, 2017 / 1:38 pm

    It wasn’t until I started reading posts written by parents about the issue of needing adequate toilet facilities that I became aware of this issue. It’s so important to allow families to be able to get out and about together – I hope that you will keep on writing and raising awareness so that more people hear and give voice to this issue #spectrumsunday

    • June 29, 2017 / 12:22 pm

      Hoping to write up a blog over the weekend about that! The British Standard document is still in draft form so there’s still an opportunity to submit comments (on this aspect and the draft also covers lots of other aspects of accessibility and the built environment)!

  3. July 2, 2017 / 7:05 pm

    You are right so much of the provision is down to goodwill. There needs to be an expectation and duty that places will provide these facilities. It simply isn’t good enough! #PostsFromTheHeart

  4. July 11, 2017 / 11:02 am

    When they decide these things do they ever just go and talk to the people who are affected by it?

    • July 11, 2017 / 11:12 am

      I really don’t know!? I guess this BSi review is an opportunity for users to input feedback, but I don’t know anyone within my campaign circle who have been consulted in the design of the standards!

  5. July 26, 2017 / 7:35 pm

    Typical! Is the only thing I can think to say!
    Not entirely which category our family would come under – ‘normal disabled people’ or those needing a CP toilet,

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