Thursday, 21 April 2016

The right to use the Accessible Loo

Yesterday, at a hotel, I needed the loo. The disabled toilet was locked. I waited about 30 seconds, but hadn't heard any sound from inside.

I have previously waited for 20 minutes outside an accessible loo only to discover that staff had locked it, but not put an 'out of order sign' up - not an experience I want to repeat. I also worry that someone could have collapsed in there.

So I knocked.

"I'll just be a moment!"

Good. Someone was in there, I wasn't waiting in vain. My bladder wasn't at 'exploding' point, so all was well.

The door opened and a tall woman, with dark hair came out.

"I'm sorry." She said. "I'm so sorry, but you see I've had my spine fused, so I need the grab rails to be able to stand up again, I'm so sorry!"

My heart broke a little inside.

How many stares and how many harsh judgments had she faced to make that quick explanation be the automatic response to a friendly smile? That she felt she should apologise for using the very facilities she is entitled to use?

How many times had people arrogantly questioned her - or even been verbally abusive because she used facilities designed for her and necessary for her health?

"It's OK" I said. "You are supposed to use it!"

And I gave one of these key fobs (available from

Her face filled with relief, and after a brief chat we went our separate ways.

Don't get me wrong, I love my job.

But sometimes I really wish it wasn't needed.

Friday, 15 April 2016

Is your reassurance reassuring?

There are many situations where reassurance might be needed. I'm going to write about one of mine - but I think the basic principle applies to many scenarios.

As someone with disabilities, most outings have many 'what if's that are different to the concerns a non-disabled person might have.

What if I can't cope? What if it's not accessible? What if it's too noisy? What if it's too hot? What if I get injured? What if someone has a go at me for parking in a disabled bay? What if I have a medical emergency? What if I do something 'normal for me' - or even necessary to manage my conditions, and people get in a flap/try and stop me doing it?

Friends, family - and even strangers - often want to be supportive. The most common phrase is: "Don't worry, I'm sure it will be fine."

After all, accessibility is a legal requirement so that shouldn't be a problem. And you want to make me feel better about the trip.

But think about it: Do you really understand all my needs and differences, and have an equally detailed knowledge and of everything that might present challenges, and suitable solutions to each one from the moment I leave my home until I return to it again? Have you inspected the accessible loos and checked the temperature control in the rooms? Do you realise how many places that call themselves 'accessible' have steps to the bathroom or even steps to the entrance?

Are you aware of all the lateral thinking and creative problem solving that I employ to make every-day tasks doable? Do you really understand how much more mental energy and strategic planning goes into a trip?

I live with my condition 24/7, and even I can't guarantee that any trip or event will be 'fine'. So your well meant reassurance does not give me confidence or security. It makes me feel that my concerns are not valid, and that my being able to actually get there or be involved is not important to you. It leaves me feeling alone and unsupported. 

What is reassuring is a response that shows you have
a) listened, and
b) are interested in finding a solution.

Perhaps checking a website or calling a venue for more access information or asking them to send photographs of possible barriers so I am prepared for them or can choose an alternative if it isn't suitable.
Or leaving enough time for a rest between activities and taking a blanket to lie on.
Or ensuring that we both have fully charged phones that are switched on.
Or taking certain emergency kit.
Or breaking a journey part way.
Or taking headphones to block out noise.
Or checking in advance where the accessible loos are.
Or agreeing that if you notice certain symptoms, you will suggest appropriate actions.

Many of these might be things I can come up with on my own, but it helps to have someone else in on the plan. If we have factored in time-outs, then I won't feel guilty about taking one. If you know I have a cool vest in case I overheat and you notice I am overheating, you can ask me if I want to put it on (because with symptoms that cause brain fog, remembering a solution is NOT easy!).

I need you to know some of my 'what if's, and associated solutions - otherwise you might unintentionally prevent me from doing something that I need to do, or you might also make a fuss about something that isn't an issue for me, or demand 'assistance' that is not helpful.

Even people who know me really well and who have listened to and acted upon many of my 'what if's before scare me when they say 'It will be fine' - because I don't know if they've forgotten to check a key point, or not realised a seemingly small detail which could be a game changer. I need to know that I won't turn up somewhere - only to be turned away due to accessibility failure - or at the very least I need to know that we have a back-up plan, so that if option 1 fails, it doesn't ruin our day.

Knowing that you know my 'what if' concerns and possible solutions leaves me feeling supported. It reassures me that we are on the same page and will be able to get through any issues that arise.

Instead of having to face issues alone because you didn't take the time to listen, I am part of a team, and that together we will make it work.

Wednesday, 13 April 2016

Stickmen: Breaking down barriers for all ages.

The simplicity and clarity of these unique keyring cards and other stickman products from Stickman Communications® create an effective solution to situations where the right words are difficult to find, people don’t seem to be listening, fail to grasp important points, or where the same information would otherwise have to be continuously repeated.

Why would someone who can speak need communication aids? Their creator, Hannah Ensor, says “When I am fatigued, I find noise and crowds overwhelming. But if I tell someone I can’t cope, they often either ask lots of questions (which make it worse) or they don’t understand. It’s horrible. I wanted to find a way to allow people around me to understand and react appropriately, but without making a fuss. The stickmen worked. They meant I could explain in a way people could instantly understand and relate to. They are a pocket full of confidence: If my symptoms kick off, I know I have the tools to deal with it.”

Available in over 100 different designs, these cards are applicable to a huge range of disabilities and symptoms including anxiety, autistic spectrum conditions, asthma, diabetes, dyspraxia, incontinence, fatigue, hidden disabilities, HMSs, mental health, pacing, pain, relaxation, seizures, tourettes, wheelchair use, and more.

See for the full range of products.

Wednesday, 6 April 2016

Do you see yourself as disabled?

The question makes no sense to me: 'Disabled' is a descriptor. Which to me equates to either you are disabled or you aren't. True, in some situations a disability will be relevant (for me, when choosing how to travel to the shops) and other situations it is not relevant at all (when deciding which flowers I like). Disabilities will vary in relevance, and often also in severity and effect over time.

So for me, the only possible answer is "Yes. Because I am."

I am disabled. Just as I am human. And brown haired. And English. And several hundred other descriptors covering everything from character to skills, from looks to likes and dislikes.

'People with disabilities'/'disabled people' demonstrate the same range of characteristics as 'humans' - the good, the bad and the ugly. Disability says nothing about these other characteristics. I don't shy away from using the descriptor 'human', so I don't shy away from the descriptor 'disabled' either.

If you do have a disability/condition that affects how you do things on a daily basis, and you find that your initial reaction is to say 'no, I don't see myself as disabled' - or to say how glad you are that friends helped you realise that using an aid/adaptation doesn't mean you're disabled...

Please pause.

And think.

Every time someone who has a disability says
"I don't see myself as disabled",
I don't hear
"I am not pitiable, I am a valuable member of the human race."
Which I suspect is what they might be trying to communicate.

Instead I hear
"I agree that disability is shameful and pitiable. People who are disabled can't be talented, funny, individual, intelligent, or valuable members of society. So I am carefully distancing myself from the really negative and shameful people who are disabled." 
True, the process of becoming disabled is often traumatic - and adjusting to new limits is challenging and can take time and tears - but take courage, 'different' can still be awesome.

My advice would be: try not hide from your disability in case it is viewed negatively, instead learn the skills to get on with your life, secure in the knowledge that 'disabled' is only one small practical descriptor in the marvelously unique bundle of characteristics that is you.

Monday, 4 April 2016

How can I support Autism Awareness/Acceptance month?

I've been thinking about this for the past few weeks.

I want to support people on the autistic spectrum, and be with them during April - Autism Awareness Month or Autism Acceptance Month, depending on who you speak to, but I simply wasn't sure how best to go about it.

So on April the 2nd (Autism Acceptance Day) I was quiet. Reading stuff by people on the spectrum.

I could write a blog post about autism....but I'm not autistic. So really it would be a load of 'hearsay' mixed in with my own assumptions. Not helpful.

True, I have a few symptoms from other conditions which, from descriptions I've read, seem  a little bit similar to challenges that autists might face - like my poor proprioception (body awareness) which, when I get really tired turns into a feeling of disconnect between my body and 'me' - like my brain has lost track of limb positions and is heading towards panic because it can't 'find' them. Like my body is 'lost' and I need to find it/reassure it that it is still here, and it is OK. Then I need weight. Something heavy to connect me back to myself. Maybe a hug, or holding a child on my lap, or sitting on my hands and feet, or wrapping my legs around the chair legs, or curling up in a ball with my forehead on the floor, or repeatedly clenching and stretching out my hands. Anything that will give a bit of good, solid, reassuring pressure. Or I may rock - the moving muscles sending more signals to my brain than relaxed ones, giving the brain the feedback and connection with my body that it needs - then I have the brain space to think about other things again. If you ask me a question when I'm like this, the reply might be terse, or distracted, or non existent. I just don't have the brain space to process questions or conversation until my brain has 'found' my body again. It's very hard to explain this to someone who has never experienced anything like it - because for me it is a normal sensation, and an instinctive response which until I was about 26 I assumed everyone experienced. Fortunately it doesn't happen severely very often, even if it is a near constant background 'thing'.

Perhaps this is a little bit similar to what some people with sensory processing as part of their autism experience - and perhaps not. It is certainly not the whole picture! But what it does mean that if I am with someone who needs to rock, or flap, or move, or press the table, or curl up...or do anything else 'non standard' it makes sense (even if I don't understand it exactly). I don't find it odd, or embarrassing. I find it normal. And I find it reassuring. Because their 'being different' reminds me that my 'being different' is OK.

So while I plan to continue to chill about peoples differences, and give them space to be however works for them, I was still unsure of what I could do during this month.

Then I realised that all the keyring cards that I have created for people with autism, were made by working with people on the spectrum. People who have contacted me to say 'Can you make something to help people understand this' or 'Do you have anything to help me if that happens again'.

So rather than writing lots of blog posts, and trying to come up with some wise and insightful blurbs, I shall simply share the image of a card every day throughout April. A card that was not decided on by a medical professional or expert, but by an individual on the spectrum.

They won't be relevant to everyone on the spectrum, but they are all relevant to at least one individual, and are therefore worth listening to.

(P.S. I know that not everyone sees autism as a disability, but I am likely to refer to it as one quite often, because I am disabled and I see 'disability' as something that means 'differently normal'. Neither negative nor positive, just a statement of 'will do some stuff differently, because that is what works for me.' And that seems very applicable to autism.)