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.

2 comments:

  1. I totally agree with this post. Thank you for putting into words what I find difficult to explain.

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  2. Oh yes, I absolutely agree too. Even my partner sometimes says he thinks I worry too much and that he's sure everything will be fine - so exasperating, when I am not worrying at all, just trying to be prepared for everything! I would so much rather think of all the eventualities beforehand so that I have them all covered and can relax and enjoy myself.

    Juliet/Cards4ME :-)

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