Saturday, 27 May 2017

Disability: Appropriate offers of help

Friends and family often struggle to know when to offer help. Especially when it comes to variable and hidden aspects of disability - such as fatigue, pain, brain fog, or depression.

To me, as a person living with some of these symptoms, it feels obvious.

If I'm doing okay and managing a task (even if I'm doing it differently) then it's pretty obvious I don't need help. Being repeatedly offered help (or worse, given help without being asked) when I'm so clearly okay is SO frustrating! It takes away my enjoyment in being able to do it, it takes away my independence, and it makes me feel worthless. Plus I waste precious energy fighting off the offers of help instead of using it to do what I'm actually trying to do!

If I'm struggling, trying to push through nearly unbearable pain, unable to think straight, close to tears - then quite clearly an offer of help would be appropriate. And when people don't offer, it is like the seriously don't care that I'm struggling. Totally selfish. Like my needs are just not important at all.

But here's the thing I forget:

They are 'hidden' symptoms.

The foggly eyes and lightening strikes of pain so obvious in stickman are not visible in human. They are obvious to me. They might be so obvious it's hard to see anything else. But they are hidden from someone looking at me.

So if we translated those two scenarios into what it looks like to others instead of what it feels like for me, we get 2 scenarios that look nearly identical - a person preparing food. But in one the other person gets their head bitten off for offering help, and in the other they get their head bitten off for NOT offering help! This can result in the other person feeling like they always get it wrong, that their help isn't wanted, that they are worthless, that nothing they do is good enough - etc.  Is it any wonder that they can get frustrated and demoralized and stop offering help?

Realising this has helped me a lot. 

You see, remembering that it's not automatically visible makes me realise I need to communicate how I'm doing in order to get offers of help that are more appropriate - and acceptable.

Communication involves both people being on the same page - so having a conversation about the symptoms (and need for help) being variable and not obvious might be a good start. Or writing a 'dear loved one' letter or similar (see my earlier blog on types of communication)

And then find ways of communicating 'in the moment' where help is needed (or not) that work for both of you. Codewords can be very useful ("out of spoons" "Level 9 zombie" etc.). 

Personally I like things that 'Make the invisible, visible' - like flashcards or wristbands.

The important thing is that together you come up with a way for the 'foggly eyes' of stickmen to be accurately conveyed in Human - working together towards a future where offers of help are appropriate and constructive instead of a cause of friction and distress.

Thursday, 25 May 2017

What I learned from Deaf Awareness Week

I have a few friends on social media who are Deaf. Most of my understanding of being Deaf comes from them.

During Deaf awareness week, one of them posted a photo of this poster which he'd put in his office, next to a message saying come and talk to him.

(This poster isn't mine - I'm not sure where it originated from. I found it really helpful)

For 2 days he didn't get a single response. No-one came up and said hi.


In an office, with lots of colleagues.

As a chatty, hearing person, I would have chatted to lots of people. For him not a single person came and said hi - despite it being deaf awareness week and there being a special invite!


If that wasn't bad enough, other Deaf comment-ers were all totally un-surprised. Frustrated, but with a lot of 'well, that sounds normal'.

I knew that being Deaf in a world that relies a lot on sound must be isolating.

What I hadn't realised is that the isolation isn't so much caused by auditory issues, but by us hearing folk feeling too awkward or unsure to say hi, or too 'busy' to make the minor adjustments that would make chatting with them possible (see the poster above).

So I hearby promise, that should a chatting situation arise, and I discover that the other person is Deaf, I won't clam up and leave, but instead see if there are little adaptations I can make which will allow us to chat.

Don't worry, I'm not going to accost every deaf person I see and insist on patronising conversation when you are trying to do your shopping! But I will make the effort to remember the tips on the poster, and learn the skills to be able to chat, should it be a chatting situation.

Monday, 22 May 2017

A tip for wheeling in the rain.

It's a while since I've wheeled in pouring rain.

I quickly remembered that I do not like spending ages sat with wet knees. 

So, as I sprinted from parked car to station, rather smugly, I adapted my pushing posture. It worked! Dry knees......

..but within 2 minutes reality had seeped through.

I was sat in a puddle.

Take it from me: Wet knees is a lot nicer than.....the alternative!!

I'm now seriously considering investing in a wheelchair poncho of some sort.

Tuesday, 16 May 2017

The catch 22 of hidden disabilities/symptoms: Communication methods

It goes like this:

If I talk about my symptoms I am told I am being negative. That I need to stop focusing on my condition.

If I don't talk about my symptoms then people don't know how I am and therefore have unrealistic expectations - leading to frustration and misunderstandings at every turn.

It's a lose-lose situation.

However, there are various things that I've found have helped me get out of this loop.

One is to switch up the methods used. We are all familiar with the basic communication strategies, and for this blog I've categorised them as follows:

Written (formal)
Written (informal)
Code words
Visual cues
Decision making

Written (formal)
Medical letters, journal articles, official websites.
These are good for communicating with health care professionals (HCPs) who are interested in knowing more detail. (Note: it's best get a conversation going and build a rapport with the HCP before asking whether they'd be interested in a journal article you think is relevant - if you walk in and hand it over it basically communicates "You don't know what you're doing and I think you're stupid" - even if that's not what you mean!)
Be cautious about using these resources with friends and family. They can give information overload, on websites information is general - so readers have no idea whether you are affected severely, mildly or somewhere in between and may end up even more confused. They are more effective with people who already have a good grounding but want to know more.
Emergency care plan
Having emergency info handy is very useful. Even if you are capable of speaking, trying to cover everything accurately in an emergency situation is very difficult, having it written down clearly makes it easier for everyone.
Medical alert cards:
These can be great, but make sure the print on them is big enough to be read easily, and that they only give useful information. for example, they don't need to say "affecting 1 in 2000 people" because it's not useful info. And unless they are only for medics, avoid ones in med-speak because many people will have trouble relating to them. Doctors can understand normal English too.
Our keyring cards are actually more informal in the way they are written, but have had excellent feedback from use in both medical and social situations.

Written informal
Personal letters explaining how you are affected. 
Adapting a 'dear loved one' template letter from a relevant charity (such as this one on the HMSA website can be very helpful in creating a background level of understanding.
This means you can explain how you personally are affected in a way that gives the reader time to process the information at their own speed.

Flashcards can also be a great way of communicating a key point about how you are or what you need - a way to make an 'invisible' aspect of your condition 'visible'. Our experience is that they work best if they are light-hearted, not too stroppy, and get straight to the point. At Stickman Communications we love flashcards (or keyring cards as we call them) - we have over 150 designs so far covering everything from autism to diabetes, from tourettes to fatigue and pain, from go away, to please help me. But you can also create your own.

One reason hidden symptoms like fatigue are so hard to communicate about is that unless you've experienced it, it's an alien concept. So explaining it in terms of something familiar can be very useful.
I use this 'shopping on a budget' analogy quite often.
Another popular one is the spoon theory (where a spoon is a unit of energy, you only have a few spoons, and each action you do uses up spoons)

Code Words
These are fabulous ways of communicating without sounding negative. "I'm out of spoons" or "Whose stolen my spoons!" are great ways of saying fatigue levels are high - if everyone listening knows the spoon theory! Code words are therefore best used within groups that know you a bit, or where people are familiar with the code word. In the online community of people with hidden disabilities and fatigue, the 'spoon theory' is so well known that most people will understand spoon references. but use it with family or colleagues and you are likely to need to give a full explanation.)

When I worked in an office, we had the 'Vodka Standard'. When my symptoms escalate, I get symptoms similar to being drunk (due to POTS). And if I get really bad, I need to lie down and cool down - but the symptoms mean I often don't realise how 'drunk' I am, so it was essential that people around me could notice and point it out. Instead of laboriously describing symptoms, things like "Hey, you aren't drunk today!" or "keep an eye on her, she's 2 vodkas already" were common place, amusing, and helpful.


A new colleague started in our section. Halfway through the day "You're drunk, Hannah. 2 vodkas?"
Horrified, my new colleague sat thinking that I was literally drunk at 11:00am, at work, and everyone was treating it like it was normal! - The code was explained and all was well, but it shows how important it is to use code words with care!

Visual analogies/illustrations
These can be graphic or descriptive. I love them. Because they communicate accurately, but with a slight chuckle which, as Terry Pratchett wrote, "helps things slide into the thinking".

 So when fatigue is so bad I can scarcely lift a finger, and I feel tetchy, grumpy and grey, it's a rhinoceros.

Or when brain fog has stolen my short term memory, word recall and general ability to function at the required level, the zombie references creep in.

The possibilities are endless and you can invent any that work for you.

Similarly Internet memes can be useful.  For example for those days when I feel a bit better than a recent hideous patch, but am still very symptomatic I might use phrases like 'fragile-ly fabulous' from this image:

But remember: 50 memes in one day trying to explain your entire condition will be overload and ineffective. One or two showing the key points relevant to that day is much more effective.

Visual cues
These are another one I love.  Flash cards can come into this category, but so do 'traffic lights' type concepts.

Like our 'traffic lights' wristbands, or wearing coloured badges with red meaning 'bad day' green meaning 'good day' etc. Things which communicate instantly with those who need to know, without any conversation having taken place. these can make life so much easier and remove the need for a lot of talking about symptoms while still letting people know how you are so they can adjust expectations accordingly. Even things like having a 'bad day' T-shirt that family knows if you are wearing it, it means you are having a bad day can really help.

It's important to remember that actions speak louder than words - so if you hide the symptoms that your actions cause, the people around you will never understand. How can we expect them to understand what we don't allow them to see? This is covered in a previous blog: 'when actions speak louder than words'

Decision making
In my experience, one of the hardest things is when I say 'I can't do that' for good reason, and the response from friends or family is to try and persuade me that I should do it. Sometimes I might be underestimating myself, but often it's a communication problem: they are unaware of the thought process behind the statement. Perhaps I know I'm really busy the day before and so will need recovery time. Perhaps there is something really important the day after which I need to pace to be able to manage. So by involving that person in the decision making process they can gain a lot of insight. And can also start to understand the barriers and even start helping think up things that will make things easier to do.

I might start off by saying "I'd love to join in, can you help me see if it's doable?" and then I effectively follow this process:

So in summary: 

There are lots of ways to communicate. If one isn't working, try another technique.

Creating understanding is like building a house, it's best done one brick at a time, with careful planning - each brick in place is a little bit of progress. Dumping a whole heap of bricks in one go just makes a mess. 

Tuesday, 9 May 2017

"The things we do for disabled people"

This blog is me trying to process a conversation I had earlier.

Today a chap from a UK company called me, trying to solve a communication issue that they weren't familiar with for a young girl living half way round the world.

It wasn't an issue that our products are designed for, but I could point him in the right direction. It was nice to be able to help.

I was thinking to myself how nice it was to randomly help someone to help a random stranger who was struggling with an issue 1000's of miles away.

And just before we ended the call he commented:

"The things we do for disabled people!"

I could practically hear the eye-roll. And the 'aren't we nice for doing this for them'.

Now I totally get that this was a really random chain of people trying to find help for a total stranger when the solutions weren't in our spheres of expertise.

"The things we do for total strangers!" - Oh yep, definitely. It is very random the things we sometimes do for strangers. Or even "The times we go way beyond our job description!" Definitely.

But it wasn't. It was "The things we do for disabled people!"

I didn't respond because I was blindsided. And that was the end of the conversation.

I am a disabled person. Am I such a burden that anyone trying to help me solve the multiple accessibility issues I face can be expected to eye-roll?

Helping a disabled person get access to basic communication is not eye-roll worthy, it's an obviously necessary and important thing. Sure, it can take effort. And it might not be my job. But trust me: the effort of the 'helper' rarely exceeds the effort and frustration of the disabled person trying to cope with the lack of access they have. I spent 2 minutes on the phone helping that child. Perhaps that chap on the phone had spent a couple of hours researching. But the girl who had no effective communication - she's having to try and resolve this 24/7, trying to find a way to make herself understood.

By all means remark on the extraordinary links the internet has enabled. And the random enquiries that businesses can get that mean we end up going way outside our roles to investigate.

By all means say 'I'm sorry, I can't help with that' when you get an enquiry you can't help with.

But don't make the mistake of thinking that helping create access for a disabled person is a tedious task you are heroic for doing. Because that, quite frankly, is insulting.