>The Fight Never Ends – #BADD2011

>Today is Blogging Against Disablism Day (BADD).  BADD started in 2006 I believe making this the 6th BADD.  When it was first set up I was a campaigner and an advocate but not as much as I am now.  I was really excited by the prospect of this day when we could all come together and work towards a common goal – the fight against disablism.

6 years later? Not so much.

Days like BADD and other events like One Month Before Heartbreak are wonderful at raising awareness.  And they take a lot of work to organise so I have big respect for The Goldfish from that point of view – I would rerun OMBH but I’d really rather not!  The downside of such events however is the fact that once they’re over the attention can fade.  No one can fight all the time and no one can pay attention to fights that continue endlessly.  Personally I am suffering somewhat from “campaign” burnout at the moment.  In a way I’d really rather ignore BADD this year but I know that I’d feel guilty if I did that.  But I’d like to ask everyone reading this to remember that whilst BADD is a once a year thing, disablism isn’t and so the fight against it never ends.  If you take nothing else away from this entry, please remember that.

Disablism happens every single day.  If not to me then to someone out there.  I can’t remember the last day I visited twitter and didn’t see at least one mention of it.  Maybe not by name but implied in the description of what happened, the hurt feelings, the abuse or the pain.

There are a lot of things which happen to me which I don’t consider disablism because they are my disability normal.  Some of them I deliberately choose not to blog about because in the grand scheme of things it’s not a big deal and it’s easier to move on.  But then I find that if I do tell friends about them, just mention it in passing sort of thing they can be surprised by what my life is really like and think things are terrible when to me they aren’t.  That’s absolutely ridiculous isn’t it?  The struggles of life with a disability, of disablism blatant or accidental are so normal to me that unless it’s huge I don’t always register it.  Truth is however I can’t go along thinking and focussing on the negatives in life and how terrible things are because I’m already on antidepressants and I’d need a whole lot more if I did that.  I can choose to wallow or I can choose to live life and fight despite my disability.  And I choose acceptance, a fight and lots of living.

Want to hear something else that’s totally ridiculous now I think of it?  I recently had a conversation with someone whose partner (an acquaintance of mine) had started using a wheelchair a couple of weeks before.  I think it was unexpected and by the sounds of things it’s not been very easy.  All of which I’m sure we can agree is totally understandable.  But as we were talking (this was just a brief chat) a couple of things they’d been finding difficult came up in conversation.  They were surprised by what those were.  I was surprised by their surprise.

That’s something that always happens when I talk to new or short term wheelies.  They talk about how outraged and shocked they are that they had to be lifted up a step into the cinema or the restaurant they’d been looking forward to going to didn’t have access when they got there.  And I sit there and think “welcome to my world” and their shock and surprise surprises me.  Because things like that are normal to me and if I’d not been somewhere before I’d check into it.  It’s rare that I can just head out the house and go somewhere new without some advance research and there’s always this little part of me that wonders at the fact that others don’t have to do that.

Disablism, problems with access and other disability related issues and obstacles no longer surprise me.  That’s gotten to be true to such an extent that when I went to the hairdressers (in a new premises) on Wednesday and they knew where their moveable ramp was, knew how to use it, it worked for me and there was no fuss whatsoever I was surprised.  (and so was my (nondisabled) Mum when I told her – she commented they must have been practising as they knew I was coming).  But the fact that’s the case? It’s totally ridiculous.  The fact that I talk to new wheelies about issues and the fire they still have surprises me?  Even more so.

But that’s what life is like for me.  It’s what life has been like for me.  Disablism, disability etc have all been a part of my life.  They will all continue to be a part of life for me as long as I live.  I hope however that as the years go by it will be much much less.  But must of all I have a hope for all the new wheelies and other disabled people out there.  Those who today have had accidents, or strokes.  The small children with CP just learning about their wheelchairs.  I hope that they never find disablism becomes “normal” to them.  I hope they never become as bitter as I am at times about it.  Because that, to me, is why we have events like BADD.  It’s why I am, and always will be, a fighter.  However reluctantly at times.

>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


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