An Unexpected Revelation

At CAB today we did some training on how to support clients who are appealing disability benefit decisions. What to do, what type of information to put in the various letters (for mandatory reconsideration) or forms (for appeal).

And the subject of getting dressed came up.

So we covered  the need to check how long it takes, do they avoid certain items of clothing or look for certain fastenings because that’s the only type they can put on (for example I can dress myself but I mostly wear trousers I can pull on and don’t wear socks as I can’t get them on and my shoes sometimes fall off as I struggle with them).

Then someone raises the point of needing to sit down to get dressed.  Someone else said “yes, because that’s not the normal way to get dressed.”

The conversation moved on pretty quickly but I was sitting there thinking “What? Sitting down to get dressed isn’t normal?”

I did kind of know that – I’ve seen many friends and family members get dressed standing up but at the same time it surprised me to hear something that’s my normal described as not the normal way of doing so.  It probably shouldn’t have done but it felt like a bit of a revelation. I think I’d been kind of assuming that sitting to get dressed like I do was normal and it was the ablebodied people with their insistance on standing to get dressed that were the unusual ones.

I mean, really, why do that when you could just sit down somewhere comfy?! It makes sense to me. But if society wants to see their weird hopping from foot to foot and trying to balance as the correct way to get dressed I’m not going to argue with them.

I would so hate to be normal after all.

Normal, Mundane and Boring

This is something I’ve been thinking I should blog for a few months but haven’t got round to. I was talking to someone about the internet and disability earlier and this was something I mentioned. So now I’m blogging it.

I think sometimes it’s very easy to blog about the things that make me angry or that annoy me or that happen out of the ordinary. Generally things I blog about are things that I’m passionate about and often times that passion comes across in blogging about negative things.  It’s easy to forget to blog about the other side of the story – the times when things go well or are positive. Usually because that’s just routine and isn’t really worth noting.

Back in November I went to London and I had an absolutely terrible journey home. There was an issue with part of the tube not running and my need for step free access making finding an alternative route difficult (this was in part due to a failure on my part as an advocate because I didn’t have the knowledge to push for what should have happened to happen). And then there were big problems with the regular trains due to overruning engineering works and again.  It was frankly a nightmare

Early last year I also had a bit of a nightmare journey. In part because I was using stations I’d not done before, in part because it was during the floods and in part because I was travelling with a couple of people I’d not done before. And their expections of what would happen, my expectations of what should happen and the reality of what did happen were all slightly different.

I then spoke a few months ago to someone who was with me for one of those journeys and told them about the other.  I know they read my blog so they may have read other stories of difficult trips. This led to their commenting that I “don’t have much luck” travelling on the train

And nothing could be further from the truth.

By my reckoning since the beginning of this year I’ve

Been to Reading once – and that train journey was fine.

Been to Birmingham once which involved changing trains at Oxford – and those journeys were unremarkable

Been to London Paddington once – apart from having to chase after the assisted travel staff member when he tore off from the customer reception to my platform faster than I could go it was fine. Terminal stations, particularly London ones have a reputation for making you wait for assistance but there was a man with a ramp ready and waiting when the train pulled in. I came back on an earlier train than I was booked on and asked my Dad to go to the station at this end to meet me. When he got there they said “We know she’s coming on the earlier train!”

And counting today I’ve been to Oxford at least four times. I did have to come back via Reading on one of them because of a broken lift. But it was easy and I got to chat to someone who works there I’ve known for years but hadn’t seen for ages.

That’s basically 17 trains. (7 return journeys, one of which involved a change and my extra diversion to Reading). 34 interactions with station staff who needed to be there with a ramp and help me. One that was a problem but which was quickly and easily resolved with little stress. And none of them were negative or bad or really worth remembering.

It can hardly be described as my having solely bad experiences with the trains.

But – and I suspect this is true of many things if I think about this – I don’t blog about the normal because it’s mundane and boring and not worth doing so.

I think perhaps I should.

Travel

I feel like this should have a much catchier title but I don’t know what it is!

I’ve been thinking a lot over the last few months about travel.  About whether I could swing a proper trip next year, financially, practically and most importantly all of the disability related aspects that go into it.  And I’ve been considering the disability aspects of it even more over the last few weeks. I’ve had a night or two away in this country over the last few years but I’ve not had a proper holiday since 2007

I have two options in mind – a dream trip and a more realistic trip, closer to home to visit a friend. For both trips I’d be travelling by myself which isn’t a problem because I’ve done that before on a plane. But recent events have made me think a bit about this and left me unsettled.

First there was an incident where my good friend Sarah flew. And the airline destroyed her powerchair.  Thankfully that was on the homeward part of her journey so it didn’t ruin her holiday – and she’s been able to get the airline to cover the cost of a replacement chair. But it’s a pretty heart stopping thought. What the hell do you do if you get to your destination and your wheelchair, your only form of mobility isn’t there or is destroyed?

My mum reminded me when I told her about Sarah’s wheelchair about an incident when I was a teen when we watched as the airport staff dropped my manual chair off an ambulift. Luckily it bounced. Given that’s level with a plane door and how high planes are I’m surprised.

And another friend posted a story on facebook about having so many problems with a language barrier she’d been convinced her chair wouldn’t be there when her flight landed. It was, but again what do you do if it isn’t? I don’t see a language barrier as an issue on either of my hoped for trips but… it was definitely a moment of “oh no do I need to worry about that as well?!”

I’ve come to the conclusion that any travel for me would need to involve either taking both my manual and powerchairs. Which is doable once I’m there but whilst getting to/from/around airports with luggage and one chair seems easy to plan, throwing in a second chair brings more logistics to solve. Or I take the manual and hire a powerchair wherever I’m going and hope it works out.

But then there’s the hotel issue.

Mum and I went to London a couple of weeks ago. We stayed in a particularly well known chain of budget hotels which has a reputation for being one of the best for disability access and advertises with a famous comedian.  I’d for some reason got it in my head that this was a relatively new hotel (true) and that it only had adapted rooms with wheel in showers (false). Then I saw an access review on DisabledGo for that particular branch and some rooms were adapted with baths.

So a few days before we went I called them and asked please could they make sure I got a room with a shower and could we have it as a twin.  The person I spoke to told me she “thought” they only had showers in their adapted rooms so not to worry. I told her that wasn’t what the internet said so please make a note anyway.

When we checked in the person at reception commented about my having phoned and that she was the one I’d spoken to. I found her patronising.

The room we went to was an adapted room. Made up as a double. And with a bath.

I’d tell you I was shocked or even surprised by that but I wasn’t. I would have been surprised if they’d given me what I wanted first time (pleasantly so).

Back to reception. Mum’s walking next to me going “don’t get angry”

Someone else was on reception. I explained and he found us another room. I don’t think he understood why it was a problem though. We had to wait while they made it up and they got us a free drink while we waited.

It helped and we got the room we needed and we had a good stay.

But I was still pissed off.  Because what is the fucking point of my booking an accessible room and going to the trouble of ringing them to explain my needs if I’m going to get fobbed off because the staff member thinks she knows better and my requests ignored?! And I was thinking of other stays in that particular chain over the last six or so years.

One of them I went straight into a room that met my needs and it was probably the most accessible room I’ve ever seen in a hotel room (and I’ve stayed in some hotels that specialise in disability). One of them like this one where the room I got didn’t meet my needs but I was moved to one that did. And one they didn’t have a room that could meet my needs so I was stuck.

So a complaint went in to their head office when I got home. And the manager of that hotel called me.  I was very pleased with his response and I hope changes will be made to prevent stuff like that again – some based on my suggestions and some based on things he brought up. But that’s just his particular branch. I’ve had the cost of our stay refunded too.

But then the fact I’m planning to stay in another of their hotels later in the year came up. It’s a lovely place he tells me, new, only just opened a week or so before and he’d stayed there himself. If I want he’ll call them and explain the situation and sort it for me so I don’t have a repeat. So I say “yes, please.” and ask him to email me to confirm.

I’m really happy because I feel listened to, problem sorted, bonus money back (I didn’t expect that as we actually stayed and did so in a room that met my needs) and I feel I’ve made a difference. Life is good.

Ten minutes later his email hits my inbox and the crash of access woes back into my life and brings my mood down. Life is not good.

This brand new literally at that point open less than a fortnight hotel didn’t at that time have any accessible rooms that would meet my needs – i.e. with a wheel in shower – and they didn’t know if they would in time for my stay. I assume they must have had accessible rooms with a bath otherwise I want to know how the hell they were allowed to open.

It took a week for me to get a definitive answer.

During which time almost everyone was suggesting I cancel my stay and I was stressing because I’m going for a very specific that weekend only event. And I was trying to see if I could find somewhere else to stay if I did cancel. At which point I discovered that the other well known budget hotel chain (them of the “no sleep till bedtime” adverts)  was allowing me to search for accessible rooms in the location I needed and bringing up hotel rooms only to include part way down the details of the first three hotels the words “unfortunately this hotel has no wheelchair access.”

I’ve now been promised that this new hotel will have suitable rooms by the point I stay and they 100% guarantee I’ll get one.

But I’ll believe it when I get there. And in the meantime I’m wondering just how possible a longer trip abroad really is.

Emma, Elsewhere

If you were looking for a blog post from me today you’ll have to wander over to Disability In Kidlit where a discussion post I contributed to has just been published.

Say What You Will is a YA book by Cammie McGovern where one of the main characters has CP and the other OCD.  If you’re like me and in the UK you’ll find it in book shops under the title Amy and Matthew.

***This link contains spoilers but this post on my blog hopefully doesn’t***

Emma Crees, Courtney Gilfillian, and s.e. smith review SAY WHAT YOU WILL

I really enjoyed the discussion and getting to chat with Courtney and s.e.  It’s a long time since I’ve got to chat disability with knowledge people with similar views to me.  And to get to do it in the context of a book was even better.

I liked the book more than I think comes across in the review until I started thinking in depth afterwards about how sucky the disability aspects were. I don’t think I’d recommend it though.

It was obvious from the word go that the disability stuff was a bit OTT and bad but then when I started chatting with my fellow contributors and thinking about the whats and whys.  I think it’s easy when you’re reading a book and caught up in the plot to overlook the sucky bits but not when reviewing and discussion.  And I wouldn’t want a teen I cared about with either CP or OCD (or actually any teen) to think the portrayal of the characters and the way they were treated was OK.

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).

In which I ramble and am grouchy when it comes to “awareness”

(I was going to title this “why I’m not blogging about CP awareness day” and then I realised that by writing this I pretty much was blogging about CP awareness day just not in the way most people are and that would be a pointless title)

So. Word on the street the internet is that 25th March is CP awareness day. i.e. that tomorrow is CP awareness day.

Except,  to me, it’s not, really.  It’s national CP awareness day in the US.  I’m not in the US and I sometimes feel like the entirety of the fucking internet resolves around people from the US  and that those of us not in it get forgotten about (do you know how many book competitions etc I can’t enter because they’re US only?! Too many).

I just deleted everything I’d written after this point.  I’d somehow managed to hit 443 words without even beginning to cover the point i wanted to make with this entry. Clearly I suck as a concise writer. Particularly when I can actually sum my point up in one TL;DR sentence. Which is:

I don’t really see that there is any need or point in awareness days in general and particularly for CP.

I don’t know what they do.  I find that a lot of people assume I have MS but when I tell them it’s CP pretty much everyone has heard of it. (I did have one rather amusing conversation last year with someone who had CP and CF (cystic fibrosis) confused but…).  I’m not sure why I might need more people to know about CP.

It’s not like there’s some Sheldon style mad scientist in a lab somewhere who has never heard of CP and is sitting there going “hmm I’ve found a cure to some random neurological disorder affecting people from birth and mostly causing mobility difficulties and spasticity but I just don’t know what disorder it is. If only someone could make me aware of it’s existence I could change the world for the 1 in 200 babies born every day with it. What a dilemma.  If only… if only…”

I don’t need a cure.  I’m pretty much perfect just the way I am.  I’m the person I’m meant to be right now.  Plus, given that I’ve spent 31 years using my body in a way it wasn’t designed to be used I’ve got some unusual wear and tear going on (hip issues for one) that curing my CP could halt or possibly improve but wouldn’t get rid of. Also? CP is brain damage. Ain’t no one touching my brain.

And most importantly I can’t help the part of me that reads or hears things about the desperate need for a cure for CP and thinks “there are plenty of other conditions out there that need curing more.  Ones that kill people.” Focus on those.

I class disability awareness and CP awareness as different things.  I believe disability awareness is important.  It’s through the disability rights movement that the community as a whole can improve access and achieve things.  Focusing on little things for one condition or another can’t do as much much as focusing on the majority.  Which is why days like the International Day of Disabled People are much more relevant and important to me (the fact that the entry I wrote for it last year remains one of my most powerful in my opinion is nothing to do with that, honest)

I truly believe that the best way I can help myself and others with disabilities – be it those with CP in specific or disability in general – is just to live my life and get on with things. If people see me doing and being I think I achieve more than if I do some specific stunt to raise awareness of CP.  Because to me CP isn’t just one day – it’s everyday.  And I’m much too busy to do anything more than live my life.

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

>”I’m Fine” or Telling It Like It Really Is

>I’ve been saying for a while that I planned to write a “what’s life really like” type blog post.  This isn’t intended to be a moan or a woe is me type post… it’s just intended to highlight that which I don’t often show and what saying “I’m fine” can really mean.

So far today I have

Spasmed and kicked the shower screen as a result knocking it open.  But thankfully the shower was facing away from it and I caught it quickly so didn’t flood the bathroom.  This happens most times I shower and the screens no longer fit together well.

Needed help to put my left shoe on as my spasticity just wouldn’t let me get that one on properly although it would let me get the right one on.  Worryingly that’s getting to be a bit of a situation normal.

discovered that I can’t get into the back of my mum’s new car.  So little leg room and so tight legs that I didn’t even try it.

And that my chair (which we had thought would fit easily) needs a wheel taking off and a lot of jiggling to get it in the boot and even then it’s a ridiculously tight fit meaning if there’s more than just me and mum in there it’s not practical.

Wheeled myself around Reading.  This involves being dropped off and picked up right outside one of the shops and skipping some of the places I would usually go due to spoons/distance/extra time needed when in the manual.  BUT I will say that I definitely think I’m getting a bit fitter.

Asked several complete strangers to open doors for me, fill up a cup with water from the machine, put rubbish in the bin for me etc

Had to get the shop assistants to put things in my rucksack each time I bought something.

Called my mum to ask her to meet me and help me sort out some tops to try on (knew she was in the same shop I was as we’d just been dropped right outside) due to reaching, not being able to see sizes (height again) and carrying them.  She came in the changing room with me as she had a top to try on too and that was easier although I could have managed tops without help.

Been very impressed that I didn’t have to wait at all for things to be moved out of disabled changing rooms. And then thought about how wrong that is – most people aren’t impressed when they can try tops (1 shop) and bras (2 other shops) on with no fuss, it’s what they expect!

Queued in one shop to ask for someone to help me reach the bras and find my size.  Which meant I had to tell her my size but thankfully I’m not modest about things like that.

Spasmed so hard that my footplate is knocked out of shape and needs adjusting yet again.  This seems to happen every couple of weeks.  But this is better than when I snapped a bit off in a spasm a couple of weeks ago (same leg, it’s always the same leg) and had to have a replacement part fitted.  It’s no wonder the last time I called the repair guys I said “Hello, can I arrange for my chair to be fixed please?” and they went “is this Emma?” is it?!

Gotten home tired and achy from shopping and needed to rest to recover.

Resorted to painkillers for my sore hip (probably due to spasticity as it’s my “good” leg hurting and the theory is it takes more of the strain when I transfer etc) and achy elbow (likely due to the wheeling). They make me feel a little more tired and out of it but I’ve not taken everything I can so it’s better than it might be.

Drank more than I wanted to as I was worrying I’d not had enough today (a frequent occurrence since I had that UTI).

I’m now going to sit outside and read a book for a bit.  I’ll transfer into my powerchair to do it because I can tilt it right back which is important as otherwise I’d have spent too much time in the one position which is not good considering I’m at risk of pressure sores.

Oh and when I make some dinner in a bit. I plan to make extra and freeze it for a day when I either don’t have the energy or the time to make a proper dinner.

>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


“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