Talking, Ten Years Later

It’s that time of the month again when I mosey on over to Bea Magazine and share what I’m thinking, feeling, doing, whatever with them.

I don’t like February. There have been a lot of tough times in previous ones and there are several anniversaries now in a short time. It’s been long enough now that most of their sting has gone but still it lurks. This year I remembered the dates but it wasn’t until several days into the month when I wondered why I felt down and put it together that its often a time I struggle.

Yesterday marked 10 years since I was first diagnosed with depression. It is what it is. I can’t change it and I’m not sure I would if I could.

I’ve written a bit about that over on Bea in Talking, Ten Years Later.

Happy Tears

I was asked to speak at an equality event today. About the access group (AFA) I’m chair of and a bit about my own story as a disabled person.

I think it well. I didn’t write a speech, I had a few ideas but wanted to just talk off the cuff. It helped that this is I think the third time I’ve explained to people what and why AFA is (although previously I’ve only done so in informal settings). The very first idea I’d thought of when thinking it over I forgot to use.

I talked about how I don’t suffer from CP because it’s all I’ve ever known. How just because me and another hypothetical person both use chairs doesn’t meant we have the same needs. And I talked about lots of other things. I can’t remember exactly, I wish I could.

One of the things I mentioned is how failing to provide access and inclusion doesn’t just mean I miss out. I shared the story of the Major Access Fail. Through that course I’ve made some new friends. But I’ve spent so much time fighting and arguing and being upset about that I feel like those new friends haven’t met me. They’ve met upset, depressed, fighter Em whose been made to feel worthless. They’ve not had the opportunity to meet happy, having a laugh Em who gets on with things, is confident, opinionated and loves life. Me.

After I finished speaking I went to the back of the room and the organiser leaned down and whispered to me “that was brilliant” so hopefully it worked. Next there were a few more speakers then time to mingle. During the mingling time I spoke to a few people and asked them if they thought it went ok. I was a little unsure I’d hit the brief. A few interesting comments, I think I might have got some people thinking.

Someone I vaguely know came over to chat. I think it was the third or forth time we’ve met. We did the usual “hi how are you?” bit and then telling me she’d liked my speech she burst into tears.

I froze and thought “oh shit”.

What I said was “I didn’t mean to make you cry.” hopefully she missed the panicked note in my voice

Through tears she shared why. She has a young granddaughter who has CP. Ever since the diagnosis she’s been upset about all the things her granddaughter wouldn’t do. Hearing me talk about my life gave her hope that things would be ok.

She told me the tears were happy tears, happy tears.

I gave her a hug and I must admit I had to fight off happy tears of my own.

I’m not sure what I said that helped, I never expected anything like that to happen. I’m not even really sure I did help, sharing struggles like that.

But…

If I can make one person think differently about how they approach disabled people I’ve succeeded in my talk.

Reaching someone else and helping the family of a toddler have hope that a CP diagnosis isn’t the end of the world is huge. I don’t have the words to explain what that means to me.

It doesn’t negate the bad experiences I’ve had. They still hurt, they still shouldn’t have happened but will again. And in the case of major access fail its still outrageous. But being able to use that in a positive way takes away most of the sting of the memory.

It’s not OK.

But it sure as hell helps.

♥ 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

>Disability Normal

>On Tuesday I bumped into a new friend in town and we went for a drink.  We chatted for quite a while about this and that.  It was fun.  She’d mentioned maybe going to Bicester Village sometime and said it would probably be short notice.

I didn’t expect it to be quite as short notice as it was (one hour) but we went Wednesday along with two of her daughters.  That (Wednesday) was I think the fourth time I met her.  I got some sailing gear (which unfortunately doesn’t fit) and a few small silly bits in Accessorize.  I think realistically there isn’t much at Bicester Village for me – being fat and restricted in what you can buy because of disability (i.e. shoes are a nightmare and certain clothes types don’t mix with a wheelchair well) and also being on a very limited budget but I’d figured that might be the case.  I’m told we didn’t see more than about a third of the place though so I could be wrong.  On the whole I thought it was very accessible although I was disappointed that they don’t have a shopmobility there.  It was flat, pedestrianised easy wheeling but you really would have thought a place selling stuff that high quality and expensive could afford a few powerchairs for customer use.  But then crips are invisible, after all.

Anyway one of the things which came up a few times – when we were chatting over a drink on Tuesday morning and again when shopping Wednesday – was about the “insight” my new friend said she was getting into my life with a disability.  I found that quite interesting too.  In fact in some ways I was surprised by some of the things she was surprised by

There are things about my life that make it different to other peoples – both other people who are nondisabled and other disabled people too.  But the same is true for everyone in this world.  I am not a tick in a box on the census form (oh that was fun to fill out last week!) but then I don’t know anyone who is.  And if you find someone who says they are then they are probably lying – either to you, or worse, to themselves.

Thinking about it, there probably are a few times when I don’t make it clear what my abilities actually are, just what I can’t do and what I struggle with, how I manage things, what I do etc.  In a way that’s probably denial.  But realistically it’s because I live in a totally accessible flat where everything is on wheelchair height, set where I need it and basically perfect for me.  And I’m right by the station so going places on the train isn’t a drag (although I do still need to book 24 hours in advance which is why I wasn’t able to go to Oxford today).  The town I live in is relatively accessible.  I’ve got a really good manual which is supportive and has reduced my pain a lot.  And I’ve got a powerchair.

All of that allows me to be as independent and outgoing and “get on a do it” as I am.  Which seriously removes a lot of the disabling barriers in my life.  But if you take those away, like when my powerchair broke down (which was something my friend and I had talked about) or when I visit a town that doesn’t have access as good (which also happened when we tried to go into Bicester itself for some dinner) and then I realise just how much of a difference those things make.  I’ve always known that… but seeing it can be a bit of a hit and make it difficult.  Almost as if just how disabled I am hits me in those moments.

But still my friends comment about the insight she was getting into my life surprised me.  Because not being able to go into a possible choice for dinner because of access – disability normal.  Wheelchair parts taking forever to come in – disability normal.  Repairs being as expensive or possibly more expensive than those for a car – disability normal.  Needing to plan train journeys a day in advance – disability normal.  Taking what many people describe as a lot of medication – disability normal.

Disability normal.  The sort of thing you accept and you might occasionally have a moan about but you hardly notice because it’s just, well, normal.  But also the sort of thing that shocks others and makes you realise just what your life is like