Safe Space

A couple of weeks ago, a new collaborative blog – Safe Space – was launched.

For the past year or so I’ve been unconvinced by the concept of “safe space” on the internet – a space where people can be free to share/be who and what they are completely without fear of abuse, hate, ridicule, triggers or trolling.  It seems like too big a goal both with how massive the internet and it’s trolling problems have become and the fact that for some people what is acceptable and OK can be what’s triggering, abusive or upsetting for others. Online (and in person) safe spaces are a worthwhile goal and one that is needed but the implementation seems problematic to me (especially when some communities like the disability one can’t even agree on what’s the correct language to use)

But I completely agree with the idea of Safe Space, the blog and I’m pleased that I’m going to be part of the team.

Jess, who founded the site wrote:

Here at Safe Space we understand that it’s hard as f**k being a girl. Periods, sexism and trying to put on eyeliner can be all in a days work.

Safe Space is a place where a group of women bring you posts about trying to hold their shit together. Talking honestly about mental health, feminism, sexuality and other important life stuff.

No judgment, no hate, because it’s already tough enough being a girl.

I’m going to be posting there every other Friday.  I had a fair amount of self doubt about doing so but the other writers are a  brilliant, friendly and supportive bunch who have been very encouraging and supporting. And I’m really enjoying the posts that they have shared.

The first week the site launched we each shared – What Makes Me, Me. That was a tough subject to write about as it needed more than a bio. But I think most of us found that.

Mine turned out to be a little different than planned. I had it written and then on my way home the night before I realised I needed to make a small tweak. Then when I logged online I saw an old school friend had died and ended up making more changes than I had planned.

What Makes Me, Me – Emma

My second post went live on the site yesterday morning. I spent most of the day out doing errands then having lunch with a friend in Oxford etc.  I came home to my twitter notifications full of really positive and encouraging feedback.

That post was about self worth and is called Because I’m Worth It.

 

Rotation Curation for #Disability #rocur

I’ve been curating the @OxfordIsYours twitter account.  It’s a RoCur (Rotation Curation) account for Oxford and the person who runs it said living in Oxfordshire counts.

Basically RoCur is where there’s an account (often on twitter) where people take a week at a time to run it and share their experiences and tweet on the subject.  Most of these relate to places – like with Oxford Is Yours I’ve been tweeting about where I’ve been and what I’ve done – but some relate to hobbies or jobs or organisations or anything else.

I’ve been enjoying it and have learned about a place in Oxford I’m going to visit soon I didn’t know about. I’ve also met a couple of new tweeters who I’ll follow from my own account when the week is over. And possibly have a couple of other places and events in mind I’d like to go to the logistics of which may prove tricky as they aren’t in places I can get to easy.  That’s basically the point of rocur – to share tips, tricks, and experiences and recommend places and venues.  The person who runs OxfordIsYours said to me last weekend she was looking forward to reading a week in my life and that’s basically what it is.

Admittedly days like today when I’m close to home and not doing very much it feels like a struggle to have anything relevant to the account to tweet. But on the whole it’s been an interesting and fun experience and I’m glad I’ve done it.

I’d really like to have a go at curating People of UK for a week.  But what I’d really really like is for their to be a disability rocur.

And as far as I can tell there isn’t one.

I’m thinking about setting one up.  I know of one other person who is interested in taking part. But I think we need more than that to set it up.

So I need help to do that.  I need to know if people are interested in that.  And if so

I need people to be curators.

I need people to signal boost this message

And I need people to read and comment and tweet and just generally try to use this as a way to make our already pretty awesome disabilty community online better and more of a community.

I was asked on twitter what definiton of disability I would apply and I’m going to go relatively wide and say you simply have to self identify as disabled.  I am however going to specify that this is not at present open to carers because I want it to be a space where disabled people can share and speak for themselves.

Once I know that there’s some life in this idea and people are interested I will write up some more guidelines with specifics but basically it doesn’t just have to be about the disability side of being a disabled person.

Let me know in comments if you are interested or tweet me @FunkyFairy22

 

Self Care Sunday

I’ve had a good week. I’m really tired today for some reason though. This became clear when I was talking to my sister on the phone. I asked how she was, she told me. Then she asked how I was and I told her before asking how she was again. I did immediately go “oh, I already asked you that” She offered to say something different in response this time but I turned her down.

Yesterday I went shopping for the day and then came home and watched TV and listened to an audiobook (Northern Lights by Philip Pullman) and the like. I didn’t go online at all which is good.  I also started reading an actual book (The Supreme Macaroni Company by Adriana Trigani) which is really good because I’ve not been reading much at all this month. This is demonstrated by the fact the only book I’ve been reading is Northern Lights and that took me 15 days to listen to.

The other good things this week is that I’ve managed to drastically cut down how much coke I drink which is something I’ve been needing/wanting to do for ages. I did end up with a pretty stonking headache the second day though.

And I’m just about to have pizza for tea and then take over the OxfordIsYours twitter account for the week 🙂

Hate isn’t Funny, part two

To recap: On Wednesday I went to see Omid Djalili do a warm up gig.  I really wish I hadn’t because not only did he used the R word in one of his jokes he also did another which was the most horrendously ableist joke I’ve ever heard.  On Friday I posted a blog about that – Hate Isn’t Funny. This is the last I’m going to say on the matter.

That blog post got a lot of attention on twitter and facebook (and in comments here).  It’s also had the most hits of any of my posts on this blog in a very long time (I’ve not seen the stats but in terms of shares etc I think actually my recent post over on Bea Magazine has had more of an impact but not by much). And I’m glad because it means that people are hearing the point about disability and hate and how it isn’t funny.

It also received one negative tweet but that was just #nosenseofhumour (hashtag no sense of humour) and frankly if people can’t put more substance into their disagreeing with me than a hashtag then they aren’t worth bothering with, I ignored it and made judicious use of the “block” button.

Following a suggestion from a friend of mine and encouragement from my mum I also tweeted Omid Djalili the link to my blog. And to give him his due he did reply and there was some discussion between us.

His response isn’t what I’d like. But that’s mostly because I’d have liked an apology and that was never going to happen.  Frankly some of it was victim blaming. He claims he said, clearly, both nights “I’m not saying all disabled people are….” before making his horrific joke about a disability stereotype. I wasn’t in there both nights but neither my mum or I remember it happening on the night we went. I tweeted back to him that I felt like he was blaming me for being upset by it and he responded “not at all. Entitled to your feelings 100%”

And “obviously” the thing about not choosing venues with wheelchair access was a joke.  That might have been a bit more obvious if there wasn’t precendent of other comedians cancelling gigs at venues that had wheelchair users in obvious places.

On the whole I’d like to think my blog and our conversation on twitter has made several people think about what is and isn’t appropriate when it comes to disability in comedy. And more importantly I’d like to think that it’s made Omid Djalili think and he might reconsider using the jokes.  I really, really doubt I’ve achieved that because I’m too cynical and hardened by too many broken promises about access and equality for my disability. I respect his taking the time to respond but I don’t think he really respects disabled people any more than it seemed he did at his gig on Wednesay night.

Maybe someday someone else will tell me they went to one of his gigs and he didn’t use disability hate speech or ableist jokes.  But it sure as hell won’t be a gig I’m at because I’m not going to waste my money going to see him again.

In which I get Ranty

(subtitle: and lose my shit all over the Internet.)

This is ridiculous. In fact It’s the most stupid thing ever and frankly I probably shouldn’t dignify it with a response but I can’t let it go.

There’s an American company called 3eLove. They sell a range of products with their logo on – the logo is a wheelchair symbol like you see on many different things but with the wheel replaced with a heart. It’s called the wheelchair heart.  I can’t remember if I’ve blogged about it before or not. Their products have a variety of slogans on as well as the wheelchair heart.  In 2012 my parents gave me a sum of money instead of a Christmas present asking I buy myself something special that I wouldn’t usually buy for myself.  I bought myself a wheelchair heart necklace and I really like it (prior to shit that went down yesterday I probably would have said I love it but…). If you look at the pictures of my brother’s wedding you can see I’m wearing it there (I’m not sure how clear it is though). A lot of my friends have quite a few 3elove products but the necklace is the only one I have. I’ve not seen anything else they do that really called to me like that did and made me feel paying postage from the US to here was worth it (seriously, yesterday a friend linked me to one of their tops and told me how much she was paying to get it shipped here and all I could think was “I could buy a second top for the cost of postage if I bought it from a UK place” But obviously that’s not the company’s fault).

So anyway I kept hearing that yesterday (20/01/2014) was going to be Day of Acceptance run by 3elove.  And this apparently was a Big Deal.

I’m not a fan of “awareness raising” and the like and days that do that because I’m not really sure that they achieve anything that can’t be achieved by just being seen and doing and living.  I’ve written about that several times before – here is one example and there is a link to more in that entry. So I was hearing a lot about it and I sent a couple of tweets.

I tweeted:

#dayofacceptance is really poor activism and a thinly veiled way for @3elove to market themselves. Don't Other me this way #Disability

— Emma (@FunkyFairy22) January 20, 2014

and then I sent some unrelated RTs and chatted a bit with a twitter friend about stuff including what I’d just tweeted.

Then I tweeted

I don't want or need a #dayofacceptance. I deserve seven. Monday. Tuesday. Wednesday. Thursday. Friday. Saturday. And Sunday. (@3elove)

— Emma (@FunkyFairy22) January 20, 2014

Here’s the thing: I don’t want one day a year where people go out of their way to accept me and my disability and make a big deal of it. I want to be accepted every single damn day there is and I want it to be normal. You know I don’t want people bothering to tell me that my having CP is acceptable to them.  By making a big deal of it it makes me different to those in the majority and Others me. (Othering is the process by which we use an action of similar to class particular people as different and “not one of us” see this link for more detail).

I suspect a big part of this comes from medical model versus social model and cultural differences. But lets just say that those two tweets which were just random thoughts didn’t go down very well.

By my last count I’ve had tweets disagreeing with me and telling me I’m wrong from four different people.  Two of whom decided to troll me and keep telling me I was wrong. The reason I was wrong? Well, basically because I didn’t agree with them and that was just wrong. I was missing the point. I was wrong. I’ve not been able to determine what the point I was missing was because explanations haven’t been forthcoming let alone ones that actually make sense. (I RT’d a few of them and several of my followers went “yeah… makes no sense.”). Never mind I was wrong, I was hurting my followers by being wrong, and bringing loads of people down.  And most importantly I was completely wrong.

I am more than happy to have these sort of discussions if people take the time to say “well to me I see this as XYZ why do you see it differently?”

It’s also been suggested by the trolls that I need to accept myself.  I don’t know how I can do that when I’ve been in a wheelchair my entire life, would hate to be anything but and would turn down a cure if one should magically appear. My wheelchair is a huge part of my identity as well as being a part of my body.

Acceptance. Dude, it’s a journey not a destination but I’m pretty much all ready there and have been my entire life. Just because I don’t like your day doesn’t mean I hate myself.

I am surrounded by people who love me, help me, support me, tell me off if I need it, wind me up, tease me, laugh with me, cry with me, knit with me, sail with me, and do all sorts of things for me and with me.  They accept me too.  I thank them often for what they do for me and I appreciate it and they thank and appreciate me when I do stuff for them.

But I don’t thank them for accepting me. Because I shouldn’t have to. I am a part of their lives and they are a part of my life because it’s what we want.

If people I have to deal with in a professional capacity (either theirs or mine through my unpaid voluntary work) have a problem with my disability then I would hope our interactions would drip into their brains and slowly bring change and I would focus on that. If people I don’t have to deal with have a similar problem I would still hope the same thing but frankly I’d give them a chance then cut them out of my life. I’ve not got time to change lives, I’ve got a life to live.

Yes I know attitude to disabilty aren’t what they could be.  But in my life time alone  I’ve seen huge changes for the better (and maybe one or two for the worse). That’s continuing.  It’s just more effective if we live our lives and celebrate who we are and our contributions. One day isn’t going to change it.  In fact I worry it’ll make people think “well they wanted me to do it on 20th Jan and I did so they can’t expect me to do it everyday.”

People might remember the old TV ads that used to be on in December time “A dog’s for life, not just for Christmas.”  Well, my disability is for life not just one day and I’d prefer people remember that.

(I’d also prefer people to remember that a post of twitter is just a tweet. It’s not an attack on their views, just a differing opinion and there is absolutely no need for shit like the trolling I had yesterday. But I think that’s probably wishful thinking.)

(first time comment moderation is enabled on my blog – if you haven’t commented before your comment will be held. This is standard to prevent spam).

Legacy

I can’t remember where but a few weeks ago I read something that I’ve been thinking about on and off ever since. It said that in the future our descendants won’t need to employ traditional genalogy techniques to learn about us. Because what they know about us will be from our facebook posts, tweets, and blogs.

I like that idea because it means that potentially (should it turn out to be true) it means those in the future will know a lot more about my past then I will tell them. And they’ll know more about me than I do my own ancestors.

I knew all of my grandparents and saw three of the four regularly until they died. It’s been years but I still miss them dearly. I have memories of time we spent together and of some stories from before I was born that they shared.

I never met any of my great grandparents and really I know very little about them. Sometimes I hear the stories and I think that I want to know more. Or I remember a time with Grandad or with Nanny (my mums parents who were divorced for most of my life and I have few memories of them together) or with Gran and Grandad (my Dads parents) and I suddenly wish I could ask them why was… Or what happened next?

That’s partly why I kinda like the idea of my Internet postings as my legacy. Because its my words and my experiences told my way. Future generations probably will know us in a whole new way than before. As a disabled person it’s probably extra relevant. I think we’re in a time of big upheaval and change in the disability movement and whilst its looking bad short term, in the long term it could go either way. I suspect with the Internet as an archive or legacy the saying “history is written by the victors” will cease to have quite as much meaning or power.

But it’s also making me think more about what I do post. The way I blog has been changing over the past year or so. My boundaries and what I feel comfortable sharing have altered a lot. In part that’s because I’ve changed but the changing dynamic of the Internet and online community has played a role too. I feel I post more about what I’m thinking than what I’m doing now. But at the same time whilst guarded some of it is more personal, more open. That was happening before I heard the legacy quote. It just gave me an understanding to my thinking I’d maybe been missing before and brought another aspect to it.

If my great great great granddaughter knew nothing about me but the contents of one tweet do I want it to be the fact my arm itches right now? So I am trying to perhaps think again before tweeting or facebooking or blogging and share what is really important to me first.

That doesn’t mean that all the silly and random stuff I post is going. Because sometimes I’m still gonna want to share that silly joke I heard or that I had pizza for tea.

>Spoonie comments

>My previous post got what I think is the biggest response I’ve had to my blog ever.  Or at least in a long time.  15 comments here on the blog and at least as many others commenting on twitter.  I knew posting something titled “Why I’m Going Off The Term Spoonie” would stir people up but I didn’t expect that.

I’ve been really loving reading the responses and seeing all the different points of view.  Especially the ones that made me think.  I think I probably need to write something else now I’ve had the chance to talk to so many others and also to discover that my views on the use of the term aren’t as unusual as I thought.  In a bunch of my friends I’m known as the one who says what everyone else was thinking but wouldn’t dare say.  It appears by posting this I may have done something very similar – almost exposed the “dirty little secret” of my little corner of the internet.  All in all I’ve seen one person say the post made them very sad and only one person had a particularly negative reaction to it.  Ironically said person admitted they hadn’t read the post on this blog and were just going by the discussion on twitter.  Unfortunately that got a little heated, but you know what? It’s no big deal, it’s only the internet.
I think the key points that have come up for me in this discussion (or at least until I get the time to write and think more) are:
The Spoon Theory is a useful tool for a lot of people but fewer people in my circle see it as part of thier identity or culture than it would at first appear.  Equally the majority of people do recognise that it doesn’t work for all conditions.
It’s medical model based if you go by such things as models of disability.  When I read the comment in which One Off Dave said that it was a bit of a facepalm moment for me.  If you haven’t read my original entry and don’t want to read any more of this, basically that one thing can be used to sum up everything I said. 
 I personally am much more social model orientated when it comes to my CP (I’ve not considered models of disability and my depression but my initial feeling is that may be more medical model) – the social model states that it’s not our medical conditions which cause our disabilities but the barriers put in place by society.  For example, if an event is upstairs and there’s a lift then there’s no barrier to me getting to it and taking part and my disabilities aren’t a huge consideration.  If there isn’t a lift or it’s broken then it’s a barrier in my way and my disabilities stop me taking part.
I also wonder if the medical model aspects are inherent because it was written by a woman with an acquired illness rather than a disability lifelong or otherwise.  Perhaps the medical model aspects are why it works so well for so many people.  Because they view themselves as ill rather than disabled.  That’s not necessarily a bad thing even if it’s what puts me off.  I am now wondering if a social model based analogy could be written but I really don’t think I could do it and I’m not sure it would be a good idea even if I could!
Going back to the “making me think” category, Incurable Hippie posted a link to Cutefying Disability by S.E. Smith.  Well worth a read and some brilliant points relevant to this debate and covering other terms used to identify us as disabled people which are becoming part of our culture and the culture of society as a whole.

Finally, Kali made the very much needed point that it’s good that we have these debates but it’s even better that we have them and for the most part can do so calmly and agree to disagree where needed.  We are much stronger united than we are apart.

>Why I’m Going Off The Term Spoonie

>For the past several weeks, in fact probably the last two months or so, I’ve been really going off the term Spoonie. I mentioned something about that on twitter earlier this week and it didn’t go down well. I sort of had the impression that, perhaps, people were reacting to what I’d said without looking at all of what I’d said.  This is my attempt at explaining myself properly.  Please don’t take offense, these are my views and only that.  I in no way mean to imply that I think the term shouldn’t be used.  It just doesn’t work for me.

The Spoon Theory is a way of describe what it’s like to live with a long term condition and to need to break activities down into chunks and weigh up options to get through them. It’s more about the energy side of things than anything else and is a bit more suited to people with variable conditions. I occasionally find it a useful starting point at times to make people understand but it’s never been a good fit for my own disabilities. People who use The Spoon Theory or who live their lives in a similar way due to a disability or health condition are called Spoonies. There is quite a big group on twitter who use the term to identify themselves.

I have CP, which is a lifelong disability and on the whole is a static condition (basically CP IS static but the affects of aging are felt sooner).  I also have depression.  I think The Spoon Theory (TST) is a great idea, that’s a point I need to get out of the way first.  However the day to day difficulties I face are more to do access, attitudes, equipment and facility availability.  Energy is a concern of mine but secondary.  Partially this is because I haven’t ever known any different so it’s normal to me and I almost do these things without thinking.

Where TST does work well for me is in explaining the concerns I have to take into consideration – is the venue accessible to me, which wheelchair to take, how can I get there, will assisted travel work out or if someone gives me a lift, is there disabled parking nearby?  What distances are involved, do I need to take someone with me, is their a disabled loo, lifts, tables in venues that I can sit at? (a venue with fixed chairs at tables is no good for me).  And the big one, have the people I’ve checked access info with got it correct.  (See Hannah’s latest blog entry for an example)

I try to show a balanced view of disability in my blogging and in my life.  I don’t want to be all Pollyanna and annoying and look how perfect and wonderful my life is but I want to show that being disabled doesn’t have to be a bad thing and that disability does have it’s positives (I wrote more about this is my Disability: It’s Not All Negative post on Scope’s website).  However the term Spoonie seems to me to be used mostly in more negative situations.  Which is fine but goes against what I want to do in my life and how I want to be perceived.

The other side of that same point is that I’ve seen both as a CAB adviser and in other aspects of my life how things can lose their power if they only focus on one aspect all the time.  When I first heard about the term spoonie I thought it had the potential to be a very powerful term in many different ways but sadly now I fear it’s losing it (and possibly even becoming disempowering) which is part of my beginning to feel uncomfortable with the term when applied to me personally.  I’d really love to see a new hashtag started spoonie positives.

Something I can be guilty of doing at times is the “everything is because of my disability” assumption.  I don’t do it as much as I used to but it can be a trap I still fall into at times, particularly when I’m having problems with my depression as I have done recently.  A friend and I were discussing just that lately – she also finds it hard.  But she also said that in her opinion (she’s a tweeter and disabled but as I haven’t asked her permission I won’t share who) she see’s a lot of “this is happening just because I’m a spoonie” going on which in some cases is overuse (she thinks and I can see what she means although it didn’t occur to me).  Obviously it IS hard to know what is and isn’t because of disability and I get really annoyed when people say “would you… if you weren’t disabled” because how should I know?!

I think probably the biggest part of my issues with the term Spoonie as they develop and I come to understand them more is that I’m not the “right” sort of person for it.  I don’t know about living with an acquired disability or health condition.  I don’t know what it’s like to have your life change drastically.  And I don’t know what it’s like to wonder what you’ll be able to do tomorrow – and what you won’t.  It appears to me that most people using the hashtag have conditions like that.  So when I see comments like “all Spoonies dream of a cure” (I would turn a cure down) “we all wish we could go back to how things used to be #spoonie” (I have no before and chose acceptance rather than dreaming of what might have been had I not been deprived of oxygen at birth) “Spoonies are always in pain and tired” (I’m not) etc etc it makes me uncomfortable.  Because those aren’t my experiences.  But, that said,  I’ve always had a problem with labels being applied to me and being shoehorned into groups.

Oh and I haven’t seen this myself but some friends tell me the term spoonie has been mistaken for a sexual thing a few times.  That makes me especially concerned particularly as you have some potentially vulnerable people using it and people can and do share very personal details about themselves with it.  I don’t know what a good alternative would be however.

I wouldn’t be fair in this entry if I didn’t mention the fact that there seems to be a community growing amongst those of use the spoonie hashtag on twitter where people can find friendship and support.  That’s great.  It really is.  I’m glad for all those people and I hope spoonie continues to be used – if only for that reason.  Twitter has also been great for me for the same reasons.

The other positive thing about the term spoonie is that it’s given people who may not be comfortable identifying as disabled or as sick a term they can use collectively for identity purposes as a group.  It’s not one I would use to identify myself – I’m disabled and proud of that fact – but it’s still a valid term and has helped a lot of people.

On the whole as I write this entry I think it’s fair to say I have concerns about the use of the term spoonie and it’s beginning to make me uncomfortable in many ways but that’s just my opinion.  What it basically comes down to is – it’s not for me.

I’m really curious to know what other people think about this please do comment below or send me a tweet I’m @FunkyFairy22

Emma

>Disability Normal – The Twitter Version (Part 2)

>Last night I wrote a blog entry – Disability Normal – about a new friend’s comments about getting an insight into my life and what her insight made me think.  It sparked quite a conversation on twitter this morning and I spent some time gathered the tweets together.  Those can be found in Disability Normal – The Twitter Version.  I then went up to my parents house for a Mothers Day barbecue (in the rain) and returned to discover in the several hours I was out it had continued.  So this is part two.  I rather suspect I might end up doing part three as well/.


people think because you are disabled, you should have no opinions of your own, be passive and greatful – BIgPawedBear


Possessing ridiculous amount of things featuring velcroix and a bathroom with more white plastic stuff in than an OT dept. – GentleChaos


Most of the people on here whom I’ve known for years have chosen not to follow back. Presumably I bore or irritate them.? – JulianYon


have you ever had the “if I were like you I’d top myself” line? How  is that? (I’ve heard some say it is.) – Indigojo_uk


Parking in disabled bay & havin ferocious older people glare/shout @ u only to melt away as u produce ‘chair, wheels, cushion – GentleChaos


@ We’ve all been there! You get an almost sympathetic nod of approval once the crutches/scooter become evident  – PositiveAboutMS


Meeting amazing friends that you may never have encountered otherwise 🙂 – GentleChaos


 Complete strangers share their medical history&layout of home with me even when I’m not wearing OT badge. – GentleChaos


 or maybe OT normal? Finding that I can’t help checking out other people’s assistive kit..Often thinking dang that’s cool – GentleChaos


Silent panic that grips conversation when blind person says ‘I saw that on TV last night’ – longcanejane


Being told by a complete stranger that if you only eat [something] or don’t eat [something] you’ll be fine – IncurableHippie


Complete strangers telling you “My aunt had that and she died of it!” That’s meant to be helpful how, exactly? – MargoJMilne


Whenever two or more are gathered together let it be presumed to be an outing from a day centre. – Bubblejet


When it gets more and more normal for complete strangers to offer to pray for you – IncurableHippie


Annual Medical Assessment of Benefits: Need to demonstrate that faith healing hasn’t yet miraculously restored missing limb   Eridanus


 wondering why they’re talking to you in a loud, slow voice, then remember you’re using a walking stick. – LadyLikePunk


open stares when enjoying yourself – LadyLikePunk


Being told that a friend/family member/acquaintance got over it with healthy eating and excersice so you don’t need meds – Feministinti


Getting more and more irate when people decide that their bag needs a seat on the bus more than you do – IncurableHippie


Not even bothering to explain some of the more obscure limitations you have – IncurableHippie


When friends/family/even strangers get angry with you when you don’t let them make your life decisions for you – FeministInti


 “I know someone with that, hers is much worse than yours though.” – Bolli_Bolshevik


“Oh yes, I get a bad back sometimes” – Bolli_Bolshevik


Having shop assistant explain to you how to work a book of stamps – MargoJMilne


Being ignored in shop queue, in favour of person behind you – MargoJMilne


 “You shouldn’t take those meds, they are addictive” “Yoga is supposed to be great for that” christ i could do this all day – Bolli_Bolshevik


“Oh yes, I get tired too” GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR – MargoJMilne


people asking your friend if you are okay instead of you because you are in a wheelchair – NevHarvey


cooked meal does NOT mean “popped something frozen into the oven” – and the benefits paperwork doesn’t make that clear – LonAitewalker


Choosing between excessive pain and not being able to function due to the side effects of pain meds. Every day. – IncurableHippie 


People tying themselves in knots trying not to say “Take a seat”  – MargoJMilne


approaching situations calmly when non disabled people are flapping like mad – BIgPawedBear


expectation that being over 60 trumps any validity you have to a seat” – Bolli_Bolshevik


 No irony spotted by the work colleague who describes her day as ‘mad’, ‘manic’ and ‘nuts’ – MnicSleepTeachr


Being questioned why you have a blue badge – EadieDog


“I didn’t know deaf people could read and write.” – SlyJuana


“you’re oral? are you wanna be hearing?” (from other deafies) – SlyJuana


“you need to work harder. stop being so lazy. you’re LAZY.” – SlyJuana


“can you tell her… ” in situations where the speaker doesn’t acknowledge my presence & only the interpreter’s. – SlyJuana


“He’s drunk,p*ssed himself&had a fight.Look at the blood everywhere!Leave him” ‘no ,avad afit, help’ “See he’s slurring!” – Robbsart


Long stares because I wasn’t using a stick yesterday and I am today. – Jermec


“there aren’t many attractive deaf people” (or variation thereof) – SlyJuana


stress making my own condition worse, but as there’s no one else to care for son, pushing on to early grave regardless – LonAitewalker


So tired I want to cry, but dragging self to park/school/shops with kids. – Suey2y


When your new work trousers have holes in&your coat cuffs are frayed two days in – GentleChaos


Promising to go out for the evening but being so exhausted by the process of getting ready that I end up back in bed. – LatentExistence


finding time to dismiss the cat staring at me in the kitchen, because I don’t have a cat & it is my mind making things up – Robbsart


Then when the cat has gone I then have to ignore the people that are talking to me because theres no-one else in the house – Robbsart


Watching everyone else have fun and enjoy life while I’m stuck inside doped up on painkillers and oxygen… – D_incurable


When u wear reflective cycle bands to roll up your jacket sleeves…  – GentleChaos


questioning logic of needing powerchair for six months before NHS actually gives you one – apparently, crawl for a bit, ok – LonAitewalker


Have you tried acupuncture/osteopathy/organic vegetables/prayer-healing/ (substitute your own ‘cure’)?  – MusicMP


I fell to the floor in shock when son said his first words to me…he didn’t speak till he was four. – LonAitewalker


 ‘Really struggled to get out of bed this morning!’ Arrrgggghhh!! – MnicSleepTeachr


Bracing myself for the pain on those rare occasions I get laid. – JulianYon


Getting a cluster attack & having 2 leave the rare social outing halfway through as my O2 tank is 2 big 2 take everywhere. – D_incurable


Buying concert tickets you know you’re unlikely to be able to attend – MnicSleepTeachr


People told to take photos of me outside whatever the weather in case the flash makes me have a fit  – Robbsart


Having expert knowledge of the location and crip friendliness of most of the budget chains of hotels – CrimsonCrip


Can’t sleep well until I have both been up for two days and on drugs. – mxmlxviii


Feeling like someone wedged a tennis ball behind your knees. – SpazGirl11


Getting down on the floor and then realizing you can’t get up again…”I’ve fallen and I can’t get up!” – SpazGirl11


Fighting to stay awake watching telly or reading a book at noon because your painkillers have knocked you out for the day – D_incurable


“Everyone gets sad sometimes. You’ll be fine after a good night’s sleep.” Uh.. Yeah. Then why has it lasted for over 10y? – Caralynnem


“you’re a pretty woman. what’s the problem?” (mental health worker said this to me during assessment some years ago) – SlyJuana


Having people berate me for not getting out of the disabled seat for an elderly person who doesn’t want the seat anyway – Mradclyffe


Being pretty much constantly in pain. No matter where you sit, how you sit, what you do…. – SpazGirl11


“Cheer up love, what have you got to be so miserable about?” from complete strangers. How long have you got?!  – Mradclyffe


staying awake til 10:00pm is a rare adventure  – at least, staying alert is! – StickmanCrips


“Oh yes, I know about fibromyalgia, a friend of mine had it in her shoulder”. – Matofcourse


The irony of being told by friends and strangers that mental illness is all in my head.  – Mradclyffe


Laughing with friends about my habit of using drugs before&during nights out so I can have a good time..(prescribed) 😉 – GentleChaos



>Disability Normal – The Twitter Version

>My previous blog post has inspired quite a lot of chat on twitter with various people sharing their own disability normal things.  Here’s the list: (I’ve not linked the accounts because it would take FOREVER but you can search for them on twitter using the names listed or by searching #DisabilityNormal

Falling up stairs – SpazGirl11

Spilling food – SpazGirl11

Not being able to find a coffee shop without a step – Batsgirl

On the bright side, orders brought over to my table in Starbucks rather than standing around waiting – Batsgirl

filling in a form within an hour of it dropping through the door – but having to wait 3 days to be able to post it back – Batsgirl

Encyclopaedic knowledge of the opening/delivery times and phone numbers for local takeaways – Batsgirl

Being on first name terms with staff from three different train stations  – FunkyFairy22 (me)

Dropping something and not being able to pick it up because you already dropped the easireach – crimsoncrip

keeping floors clean not for good housekeeping but because you spend so much time lying on them – Batsgirl

Choking on water – FunkyFairy22 (me)

Buying FABULOUS shoes in the safe and certain knowledge that you don’t HAVE to be able to walk in them 😀 – Batsgirl

almost permanently having a “builders bum” because your trousers always slip when you transfer – FunkyFairy22 (me)

Being invisible when you go out – CrimsonCrip

having it be your fault when someone walks into your wheelchair. Even though you tried to warn them. – FunkyFairy22

Being asked personal questions by random strangers, who think its ok to ask you when they wouldn’t ask a noncrip  – CrimsonCrip

Complete strangers trying to take over pushing you and then acting insulted when you very firmly and loudly say NO!  – FunkyFairy22

when people realise I’m a disabled parent of disabled child “oh god, how do you cope?” never “can I help?” – LonAitwalker

people in various city centre shops know to keep an eye out for my son and have my mobile in case he escapes  – LonAitwalker

when over ten pills a day are considered standard, and over 15 is “recommended” LonAitwalker

Having to limit fluid intake at strategic times when an accessible toilet is knowhere to be seen – CarlFThompson

When you go out with friends to a show being asked if you ‘really’ want to sit with your friends or is crip only ok – CrimsonCrip

medic read story to my son to calm him as I was loaded in ambulance. Child wants me to be ill again so he can come back – LonAitewalker

when getting together with friends who are all crips requires feats of culinary wizardry to make sure no one gets ill  – LonAitewalker

when getting to where we need to be takes forever because the lift isn’t big enough for three crips, two who are in chairs  – FunkyFairy22

Dust is like Kryptonite  – crip_tic

Crossing the road in a diagonal type way to find a dropped curb on the opposite side. Or going on road for ages – FunkyFairy22

psuedo-acquaintance saying “oh it’s fine for YOU to eat cake, I don’t imagine you date much since you’re….you know.” – LonAitewalker

Setting security alarms off when entering & leaving shops, holding up hands & saying ‘it’s the ‘chair’ whilst going a bit red 🙁 – GentleChaos

crossing the road at a dropped kerb, to find someone parked across dropped kerb on other side – BigPawedBear

having to ask someone for help to get money out of cashpoint – BigPawedBear

getting urge to hold my cane out like a lance and joust with another powerchair user- don’t tell me I’m the only one! – LonAitewalker

asking shop assistants, “what else other than “insert product here,” do you sell? as i can’t see 2 browse the shelves  – BigPawedBear

Paying for your groceries then realising u still have 2.5kg of potatoes on luggage bars of wheelchair :S – GentleChaos

The train inspectors are scared of YOU! – CarlFThompson

Being pathetically grateful for kind supermarket cashiers who fend off the impatient customers behind me & take time.  – CatONineTails

Having to play “guess which lifts are broken today” when trying to get to college/work – Dannilion

Being glad your powerchair is fixed because you can go out and you want to go to Drs about a niggly thing – FunkyFairy22

Your attempts at losing weight waved away with “no one expects you to be thin, you’re in a wheelchair” (true story) – FunkyFairy22

Finding that I flip between being invisible & the most interesting thing in the world when just nipping out for a sandwich. – GentleChaos

knowing more about how “the system” works than the people who work in it. – FunkyFairy22

Done this before but… People assuming that I automatically know every other wheelchair user in the town. – GentleChaos

Being told to easy your lunch when it’s not been cut up for you and it’s out of reach anyway – Dannilion

all my friend’s theory is getting enough of us together = one “whole” person so we tackle things in groups – LonAitewalker

Having call buttons and emergency pulls that are too high to reach – JohnUK89

watching children with autism flock to son and speak secret language-talk as if they’ve known each other for years – LonAitewalker

Getting the giggles coz someone walked into a bench/lamppost/step coz looking at me not in front of them. – GentleChaos

Being told I’m “brave” for doing my grocery shopping, or something equally unexciting. – MargoJMilne

the assumption: if I can garden/paint/cook I’m not in pain. Medicine cabinet says otherwise. Bang goes a theory – LonAitewalker

My neurologist asking my opinion of recent research on my condition – MargoJMilne

People saying ‘oh you’re speedy’, ‘do u have a license for that’, ‘ooo mind my toes’when rolling down street in my ‘chair. – GentleChaos

the relief of meeting rheumy who works with bodybuilders and knows I don’t “just need to lose weight” – I outlift HIM. – LonAitewalker

old ladies in their 70’s walk ahead of me on a hill and smirk when they pass me up. Damn it. – LonAitewalker

People insisting on “helping”, usually in supermarkets with my chair, when I’ve already politely declined. – RantsfromRon

Strangers stopping you in town to ask about your chair then wondering “how do you manage the loo?” – FunkyFairy22

Complete strangers thinking they have some sort of right to ask about your medical history – MargoJMilne

Bein chased by kind people who want 2 give me a brollie & then gettin soaked whilst explainin I cant carry it – GentleChaos

Carers and others who think we will conform to their timetables – CrimsonCrip

When you mention coming off your medication (agreed w/ GP) and someone on twitter asks if its a good idea  – FunkyFairy22

When you have a folder on your PC full of standard letters to deal with discriminatory service  – OneOffDave

@MargoJMilne I know what u mean… It’s worse when ur at the Post Office and everyone turns around to listen…lol – PositiveaboutMS

Nice people offer to put groceries onto conveyor, you say thanks but no, they do it anyway – MargoJMilne

When you get better health advice from fellow crips on twitter than from your doctor – IncurableHippie

Your friends toddler has a dolly with a walking stick named after you – IncurableHippie

total strangers grab my son and yell at him to “behave” – ex having to step in before I throttled them – LonAitewalker

Having to take eight years to explain each of my 3 developmental disorders – Kitty_B_Good

Coming round in A&E claiming you are 18 and have no children, as your confused son looks on! – Romilagupta

not using feel-good “gift of disability” or “reclaiming” words. I’m disabled. If that makes you uncomfortable, cope – LonAitewalker

Ok, time to pass out from new meds for a while #disabilitynormal  – IncurableHippie

People visibly panic when they see you with other disabled people in a group – IncurableHippie

Crossing the road at a dropped kerb, to find there isn’t a dropped kerb on other side – anjak_J

telling child to clean some lego off the floor of his room has turned into all day ordeal of meltdown refusals – LonAitewalker

Some services and facilities are so bad that complaining becomes the norm – CrimsonCrip

Convincing your friend’s brother you’re cured just because you stood up – FunkyFairy22

two hours of prep for 10-minute appt makes GP visits moot, so we skip them – that doesn’t mean we’re “better”! – LonAitewalker

People describe you as having “no social skills” because you complain often and don’t take shit – FunkyFairy22

Getting strange looks when you use your prosthesis to stop lift doors closing – OneOffDave

clicking refresh on twitter a lot because a) it’s all the social interaction I tend to get and b) it keeps me awake – LonAitewalker

You ask your PA to help you put on a party outfit – you’re not going out for 10 hours, but only have 1 care call a day – Batsgirl

The term #spoons has entered your daily vocabulary and friends have no clue what you are on about – OneOffDave

Stop The World I Need a Rest – a Disability Normal Blog post by Latent Existence

Taking longer to get ready than your teenage niece but somehow failing to look at all as if you’ve tried 😉 – GentleChaos

Changing sides of street at high speed to avoid being blessed by random preachers in Cornmarket, Oxford #wheelchairuser – GentleChaos

you’ve referred to yourself as ‘a bit crippled’ then realised you offended the able bodied person you were talking to. – StickmanCrips

being prayed at and ‘faith-healed’ by complete strangers; or kissed by homeless alcoholics with sandpaper-like faces. – Eridanus