Educate, don’t bitch

Short ranty blog post warning…..

I’m watching the Paralympic Opening Ceremony and following it on twitter, and also catching comments on facebook. It’s impressive, I’m delighted to see so many athletes and proud that London are hosting. I’m also morbidly curious, as an obsessive people watcher, watching people who are different to the norm is just that little bit more interesting. I’m comfortable with disability, always have been, I think I’ve always been naturally curious in people, my parent’s chose our Primary School because it had a PHU, Partial Hearing Unit – not that I think that’d be what it’s called nowadays, (I suspect it would be something like a ‘Resource base for hearing impaired pupils’ or maybe for ‘pupils with hearing impairments’). My parents wanted us to know from a young age that people came with all sort of abilities, strengths, interests. I would spend my breaks hanging out with the deaf kids (or Deaf kids) and learnt to sign before it was fashionable – unfortunately I lost that ability when I stopped practising, although I learnt Makaton at university.

Annnnnyway, what am I on about. Well I have always been as comfortable with people who are disabled as I have with those who aren’t. As a primary school kid when asked what I wanted to be when I grew up I’d answer a Special Education Teacher. I was quite inspired by Mrs Renton who ran the PHU. I dallied in wanting to be a Blue Peter Presenter for a while, then special ed teacher training was cut and I ended up going to university to study for an Education degree. I volunteered as a teenager, and again at university, spending time with people with disabilities in various ways. I was fascinated by the Psychology of Special Education as an undergrad and ended up doing a PhD looking at education for children with profound and multiple learning difficulties.

All of this is context, I am comfortable with disability, I have spent a lot of time around people who communicate differently to how I do, who move around differently to how I do, who physically are different to me, who think differently to me. Some of these people may self-recognise as being disabled, others would not. I also have a lot of people in my twitter stream who do, some who don’t.

So what’s the headline about, well I happen to think we have an opportunity right now, an opportunity to engage people with disability sport, with disabled people and with what they can achieve in life or sport. There is an appetite, an opportunity, an excitement from the general public. A chance to, dare I say it ‘normalise’ disability, I know, I know, but the point I’m trying to make is that many people who only ever glance out the corner of their eyes, and those who blatantly stare at someone with a disability strolling down the street, have the chance to see what disabled people can, and do, achieve. They have the opportunity to learn, to watch, to engage. I think we should all be welcoming this chance.

….and yet my twitter stream has lots of people complaining about language, about how people refer to disability, about people getting it wrong. There are concerns about being too patronising, or claiming people are superhuman when really they’re just getting on with their lives. I thought Georgie Bingham summarised it quite well in her blog post about reporting the Paralympics. There have also been a couple examples of athletes getting into trouble with other athletes for dissing their sport or their efforts.

I know language is important, I know it *is* worth considering how we communicate. I also know that many, many people are currently engaging with the Paralympics who don’t have every day contact with people who are disabled, or don’t know that they do. People are interested, they are ready and waiting to be inspired. Some of them are alo nervous, worried about getting it wrong, offending someone or misunderstanding them. Please, please can we focus positively and educate people but let’s not get all huffy about people who get it wrong, not the first time anyway. I think as a society we have a long way to go until people are comfortable with disability, there is lots that needs to improve, but let’s take people with us on that journey. Let’s educate not bitch. I think we’re far more likely to change perceptions and have a lasting legacy if we bring people with us and do so positively.

Rant over.

Talking about cancer

Earlier this week we found out that my Dad’s cancer had returned. It’s really strange the emotions you go through when hearing news like that, well more so when you know that this time there is no cure. It is also quite interesting watching how other people respond to your bad news and in particular the language that they use (what can I say I can’t help it – I’m an obsessive people watcher, it’s what I was trained to do!)

I heard the news late afternoon and shared it with one or two people, emailed my close colleagues that evening, then later that night posted a blog about it, told a few more friends the next day and there are some that I’ve yet to tell. It’s really strange. You realise that it is devastating news for you, but you also know that other people are facing their own daily challenges and it isn’t, nor should it be, their problem.

Consequently the way in which people react is fascinating to me. I have had some really supportive emails and messages on twitter, some lovely texts, fabulous phonecalls and of course people who have silently supported me, saying nothing as I had a mini-meltdown and lost the plot slightly. I’ve yet to get a real life hug off anyone except my folks, although I have been lucky enough to get lots of virtual ones and my Grandad squeezed my arm today – which is very effusive for him.

So thank you to each and every one of you who has been in touch since Monday. What follows is a list of conclusions I’ve drawn up in the past couple days, that may be of interest! They’re my thoughts and reflections, can’t claim they’d work for anyone else but here you go….

• don’t worry about trying to find the right thing to say – it is such bad news, there is no right thing!
• it is always better to say something, even if you’re worried you’ll say the wrong thing. One of my colleagues simply said ‘I’m sorry’ – she couldn’t have said anything else and had such a positive impact.
• please, please, please don’t ask how things are if you only have 60 secs – it makes you feel awful when you are trying to share your experience with someone and you notice the other person getting fidgety and clock watching; by all means shut me up after five mins if I’m going on but probably best not to ask about it if you can’t spare the time to hear the answer – much better to just offer to catch up at a later stage.
• one of my colleagues returned from holiday and I could tell they were catching up on emails (as my own inbox gradually swelled); I returned from a meeting to a voicemail they’d left having read my email. I don’t think I’d have previously phoned someone and been so upfront on reading such news but I really appreciated it and suspect I might revert to phonecalls in future situations as it was lovely to have such a personal offering of support – I guess I’m too wedded to my keyboard and inbox!
• please do offer support, I really can’t imagine relying too much on other people for support (certainly not at the moment) but I do genuinely feel supported and like I can take people up on their offers if I need to – most common offer has been for cake, tea or alcohol – guess I’m as transparent as a window
• ask someone if they want to talk about it – depending on the time of day, what else is going on, how many times they’ve retold the story already that day they may want to talk, they may not – it’s always a relief to get the option.
• be warned that if you are really nice you might elicit tears. This is not necessarily a bad thing and certainly doesn’t mean that the person you are talking to is crumbling in front of you because of what you said – I’ve always been the same, I can plot my reaction to extreme stress as follows: anger, frustration, tears, more frustration, resolution. Actually maybe that’s a little idealised, there can be tears anywhere along the way, but usually when people are nice to me – so for me anyway, if you make me cry, that’s not necessarily a bad thing.
• please, please, please don’t think just because there is big stuff going on in my life, I don’t want to hear about the stuff going on in yours. Life is about perspective, I get that cancer and death are show stealers but I’m no less interested in your scandal, gossip, love life, mundane everyday stories, tweets, emails, holidays, haircuts or anything else. Oh go on then, if you want to pity me bake me cake and give me less work to do, but no really, don’t modify your conversations on my account. I know when Dad was very ill last time I developed an almost obsessive interest in the lives of my mates – because I wanted a reminder of normality and a reassurance that normality (whatever that might look like) would return. So please don’t change for me!
• related to the last point really, just because we’ve had bad news it doesn’t mean that my sense of humour organ has been removed. In my experience one of the best ways to deal with cancer, illness, or most of the other stuff thrown at us in life is to laugh about it, so please keep the smutty jokes coming