>So you had a BADD day

>I’ve got loads and loads to blog about and I’m definitely going to catch up tomorrow.  But I just wanted to remind people that Blogging Against Disablism Day 2010 is this Saturday.  Please pass the message on and take part if you want to/can.  It’s really important and it’s usually interesting and good fun.

Today I was chatting to the hygienist when I went for a double whammy dentist and hygienist appointment back to back thing. She asked what I’d been up to and I said I’d been swimming this morning.  So she was chattering away about how she likes to swim but doesn’t go often, which pool had I gone to etc etc etc.  Then she asked if I needed someone to come to help me get dressed.  I answered her in that sort of automatic way that you do at times – no not with getting dressed, I need help getting in and usually my friends come and do that but sometimes I’ve got the lifeguards to do it (beach area which doubles as ramped access and a shower chair).

I know that she was just making polite small talk.  But that wasn’t polite small talk that was heading into the inappropriate disability related question realm and practically out the other side of it too.  Not quite sure what’s the other side of the realm of inappropriate disability related questions but we were about 1 question away from discovering it.  I suspect she may have twigged she’d said something stupid because she stuck to teeth related talk from then on.  I’m letting it go, I think.

That can actually be viewed as disablism because she sure as hell wouldn’t ask an able-bodied patient that sort of question.  I’d like to see her do that actually, probably be quite funny to watch.

I went to an event this evening and they paid for me to have an accessible taxi take me home.  The guy got the seatbelt for me but refused to clamp my chair.  He kept saying he didn’t need to, the seatbelt would be enough – and it is a very short journey I will admit but it’s incredibly dangerous and I don’t care if we’re only going 5 metres or 20 miles, I’m having my chair secured.  And I kept telling him he did need to.  In the end I told him point blank to either secure my chair or put the ramp back down and I would get out, walk home and make a formal complaint.  He didn’t put all the clamps on my chair (missed the front on one side) but English isn’t his first language and he kept telling me to slow down (I do talk fast at times) and saying he couldn’t understand me and I was tired so I figured it was enough for the not quite 10 minute trip.  That and the way he was push on my chair really roughly in ways he didn’t need to make me think he wasn’t sure what he was doing.  Which is possible because I know the company do pull guys off their regular cars to drive the wheelchair accessible one as and when needed – and some of them hate it.

That’s disablism too because an able-bodied person wouldn’t have their personal safety disregarded like that – or at least not when the relevant equipment was available.  And they wouldn’t have to argue the point so hard.  I will be making a complaint.

Those are just my opinions and just one day in my life.  Admittedly a worse day than I would usually have although not the worst ever (oh the stories I could tell!).  But in my opinion it’s what BADD is all about, speaking out about those sort of things.

Please consider taking part.


>The Disability Blog Carnival is coming soon.  And it’s theme this time is “balance”

The obvious thing as a CP-er with a topic of balance would be to talk about walking and standing and transferring and the fact that I have very poor balance.  I can stand unsupported but only for a few seconds and a physio once described it as “controlled falling”  But that doesn’t suit me as something to talk about.

There’s a lot of other things that I could talk about when it comes to balance and disability.  Or even balance and life in general.

I suspect that being disabled doesn’t make balancing life and responsibilities and stuff like that any harder than it would be if I were not disabled.  I wouldn’t know.  It seems to make the difficulties more obvious and I know comparing myself to friends who are able-bodied (which isn’t always a good thing) that it’s very different.  I think that if I were to wake up tomorrow and not be disabled I would find the change in issues and problems and perspective as hard as someone who has suddenly become disabled.  Because having been lifelong disabled it would be a huge change.  A paradigm shift, even.

One of the hardest things for me to balance however is the judgement of whether or not a thing is a disability thing or not.  It’s led to me being accused of being too “disability centric” at times.  And told by someone who has no idea whatsoever how much rubbish they were talking that I need to learn to let go of my disability sometimes.

Recently I took part in a project where you had to phone some people and ask specific questions.  I really didn’t enjoy it which surprised me.  I know some of the others who took part didn’t like it either.  From what they said it was the fact they weren’t being completely truthfully they didn’t like.  That never even occurred to me.  I practically hated it because I felt like the questions I had to ask made me look like a complete idiot and that the people I was talking too would be going “oh well, she’s disabled, she doesn’t know any better…”

And then it hit me.

 The people I was speaking too don’t know me.  They know absolutely noting about me.  And it’s over the phone.  They don’t even know I’m disabled.

That’s quite huge because even people who don’t know me know I’m disabled.  I rock up in a wheelchair and I can’t exactly hide that fact.  I always find it kinda strange when I realise that people don’t know that – it’s such a huge, visual obvious part of me.  And it’s something I’m quite proud of.

Another example from a couple of years ago.  Sometimes at CAB I take trainees in with me so they can see what we do.  I’m unusual at CAB because of my age not my disability which is something I found very weird to adjust too (although I am the only wheelchair user where I am).  And I took this trainee in with me.  No offense to them but they could be my parent.

The client kept trying to talk to them not me even when  I was asking questions etc.  They ignored them and let me do what I was doing (trainees are not allowed to speak with clients when interviewing).  And I was convinced I was being ignored because of my disability.  At the end of the interview I was saying that to the trainee.  Who pointed out that it was because I’m young not disabled.  The client had assumed I was the one learning not my trainee.  Big lesson learned there.

There are also times when things happen which aren’t because of my disability they’re just because.  But people around me assume it’s all down to the disability.

Recently I was having a chat with someone about something I’m not very good at.  The fact I’m rubbish at it is obvious.  Everyone is in agreement that I find it harder than they or I expected me too.  And basically I just figured I was crap at it because I just was.

Then the other person (who basically knows little more than CP = wheelchair for me) made the comment that this could be because of my disability.  I said I didn’t know.  My mum said she didn’t know when I asked her either.  I could maybe see it as being related to the whole spatial awareness picture building type problems on a very vague level.  Ever since then I’ve been going “am I just crap at this or is it a CP thing?”

That falls into the we’ll probably never know category but I doubt I would have made the connection without that conversation.

My depression was around in the background for a long time before I went on treatment.  What really tipped me over the edge was three major life events in the space of about four weeks.  Two of which were unexpected.

When I was at uni I was originally enrolled on a Sandwich programme where I should have spent a year in the middle of it out at work for experience.  I applied for loads of positions and had something like eight interviews.  However there were something like 200 people on my course that year (as well as all the people looking for placements from other unis).  And there are never enough placements to go around.  Something like 30 people from my course alone didn’t get a placement.  Practically 15% of people.

I was one of them, the only one with a visible disability (whether any of the others were disabled, I don’t know).  One of the girls I vaguely knew on my course was visually impaired.  She got a placement.  There’s no way you can point blank say “the uni didn’t get me a placement because I’m disabled.”

And yet when as a result of that I had to change my course somewhat and spent a very stressful few days waiting to here from the university what the new course was etc, people assumed it was all down to my disability.  I remember a friend’s dad saying to me “if the uni couldn’t give you a placement because of your disability they shouldn’t have accepted you on the course.”  and I had to explain that actually, this was not a straight forward disability stopping me situation.  And his daughter, my friend? She has CP herself.  Having to explain that again and again  to different people made a tough situation tougher.

Thinking back now I’m not naive enough to think this had absolutely nothing to do with my disability – I suspect employers looking at me and seeing the chair did have a bit to do with why I found myself in that 15%.

But to have to keep thinking and dealing with the fact that people make assumptions about me and my abilities, capabilities, wants, needs, likes, dislikes, who I am just because I’m in the chair?  That’s HARD.  To have to wonder is it because I’m in the chair or is it just because is harder.

And it’s a tough balance for me to come up with. I doubt i’ll ever succeed fully and be able to tick that one off the to do list.

But I’ll keep trying.

>Blogging Against Disablism Day 2010 is coming!

>Blogging Against Disablism Day 2010 (the 5th one! Wow!) will be 1st May 2010.

The Goldfish is hosting as usual and details can be found here.

I could say something amazing and fantastic and wonderful about BADD and what it is and what we try to do.  But I think The Goldfish has said it all already.

So I will just quote this one small bit and send you over to read the rest:

Blogging Against Disablism day will be on Saturday, 1st May. This is the day where all around the world, disabled and non-disabled people will blog about their experiences, observations and thoughts about disability discrimination. In this way, we hope to raise awareness of inequality, promote equality and celebrate the progress we’ve made.

I’ve taken part in BADD from the beginning.  If I can I hope to get my previous BADD posts up here in the next few days.  I really think BADD is fantastic and it’s a lot of fun – a great sense of community.  But I do hope that one day 1st May will be known as “the day formerly known as BADD” because there isn’t any need for it any more..

>Mostly Good

>I’m up roughly 2lb it seems (just weighed a few minutes ago).

Which I’m fine with seeing it’s the first time I’ve weighed since Easter, I’ve not had a working oven for 10 days and I’ve been ill for almost a week.  The last two combine together to mean Emma eating a lot of takeaway.  And yes it probably does read as though I’m justifying but it’s true.

My goal for this week is to try to do small bits of exercise most days and to go the whole week with no chocolate or chocolate containing products at all.

And as for the exercise goal – I went not sailing last night (didn’t actually sail) and managed all the wheeling around really easily which I was pleased about. Due to my general lack of fitness lately, my cold and the fact that I’ve not been in my manual chair as much as I would like to I’d been a bit worried about that.

Oh the other thing which I just remembered is that when I went to the nurse last week she measured my arm and it was the same as the last time but she commented it looked more toned.  She also tried to measure  my waist but I was sitting incredibly badly in my chair and she couldn’t do it.  She said I look like I lost weight though.

So it’s mostly good, once again.

 Here’s hoping it continues.

>You know….

>You know you’ve got CP when…

You’re looking at the saintary towels in the supermarket  and the security guard comes up to ask if you need any help.

I was tempted at that point to ask him which product was better just to see what he would say or do but I didn’t.

You know you’re fat when…

You ask a member of staff to pass you something in the supermarket, specifying you want the small one and they have to ask you exactly which you mean and then go “that’s not small.”

To be fair, it was the smaller of the two products.

You know you’re a CAB volunteer when…

A friend mentions they can’t afford to go out and you immediately start thinking about possible benefits they could claim.

You know you’re an advocate when…

You don’t get a great response to a question and immediately decide that it’s acceptable for now but if it goes on you’ll have to say something.  And then spend several minutes wondering if it comes to that who is the correct person to speak to.

You know you’re a writer when…

You get a letter which starts “Dear Miss Emma C****” and you get really annoyed and think it looks badly on that organisation.  Because the correct way to address a letter is either Dear Emma or Dear Miss C**** (although I tend to prefer Ms if I’m honest) Dear Miss E C**** or Dear Miss Emma C**** are BOTH bad English.

You know you’re feeling a lot better from your cold when…

You waste time writing a whinging blog entry like the above.

>General 101 in 1001 Update

>I was just looking at my 101 in 1001 to see a specific goal was on there and it isn’t. I knew I had a very specific related goal on there but I suddenly wondered if I’d put the more general variant on there too.  Which is a shame because I could tick the more general goal off if it was.  The specific one is more appropriate to me and what I want to do with my 101 in 1001 project though.

Then I went counting how many new to me books I’ve read since this list started (as one of the goals on it is to read 250 new to me books in the 1001 days) and the answer is 105.  Bizarrely today is exactly 1 year and 5 months until it ends so that’s plenty of time for getting that one done.  I need to read 8 books a month for half of those months and 9 books a month for the rest to achieve that.

My take daily meds for six months without missing a dose is goal is two and a half months in and going well. Minor panic last night when the new box of fluoxetine wasn’t where I thought it was but I found it eventually.

I started the 1000 non blog words a day for three months goal at the beginning of this month but wasn’t finding it very easy and then I got sick so I will need to restart that soon.

Buy fewer new books is going very well.  In fact I could tick this one off as done but I think I should probably keep it up for a bit longer before I do that.  I really should blog about all the different books I’m getting and in the different ways soon.  I’ll probably post that to Reading Challenge though.

>See Also: Last Words, Famous

>My oven broke last week.  It’s finally getting looked at on Wednesday.  So I wangled an invite to my parents for tea both nights this weekend.  As I am full of cold I was offered a plate brought down to me but I said I would go there.

My mum greeted me with “I’d kiss you but I don’t want to catch that.” I spent ages teasing her “you mean you’d kiss me but you don’t love me enough” Then she commented about how I “really had a cold” And I was just sitting there going “what did you think was wrong with me when I said “I’m full of cold”? anyway apparently she didn’t know but not that!

Honest to god I pretty much half filled a carrier bag with used tissues when I was there.  And I sound and feel lousy too.

Funny moment though – at one point I sneezed somewhat explosively and then blew my nose.  Milo, my parents dog is a bit neurotic.  At that point he got scared, got up, ran outside and spent the next five minutes barking his head off as though he was trying to protect us from the evil sneeze.  I absolutely lost it laughing at that point.  It was really funny but not as funny as you’d think considering how much I laughed.  I am actually tempted now writing this to retitle this entry “Milo and The Evil Sneeze”

Then I woke up this morning feeling a lot better.  And told my mum  so on the phone.  Adding in that I’d be going to Sainsburys so not to worry about getting me any shopping.  Then I got dressed and my cold laughed in my face going “sainsburys? You’ll be lucky! I’m not finished with you yet….”

So the remark “I’m feeling loads better” can now be found under “reasons to be grateful there was a tesco.com slot for tomorrow night”,  and “who will be sitting by herself at her parents BBQ later with a loo roll by her side?” See also: Last Words, Famous.

>Bits of news

>A few quick bits of news.

  • A project I’ve been taking part in for the past several weeks and not really enjoying as much as I hoped ended (for me at least) today. I’d thought about dropping out so the fact I finished it is great.
  • I am on page 31 of Script Frenzy but I need to put the last few pages in celtx so they are properly formatted.  It’s slowly moving away from a script to more of a NaNo novel (but without the word count) so hopefully going back to actually writing in celtx will help that.
  • I woke up this morning completely full of cold which is lovely(!)
  • Did a big chunk of square knitting for the first time since I think February this evening. Yay! Much
    faster than the Fair Isle project I’m working on although that looks great.
  • My oven broke on Monday.  Hopefully getting fixed on Wednesday.  It’s interesting not having an oven…
  • It was sunny today!

>Veteran – Gavin Smith

>I recently received a review copy of Veteran by Gavin Smith from WHSmith.co.uk.  I found that very exciting because it doesn’t actually come out until June and so my copy has “uncorrected manuscript proof” and other things all over it that they usually don’t  Plus, it’s very cool to know that I’ve just spent a good chunk of the afternoon lying on my bed listening to the dyer going, napping a bit and finishing reading a book which isn’t even out for the general public yet.  Also, Gavin Smith is a brand new author which is also exciting.

Anyway, they said I could share my review so long as I linked to them (see above).  This is what I wrote:

I really enjoyed this book.  Very well written and with a good plot, it kept me guessing for a long time.  There was a big twist right when I didn’t expect it and a totally unexpected ending.  Combine that with laughs, intriguing ideas and action right up to the very last page and you have a very good read.  There’s is definitely room for a sequel here although with the way the book ends the form it might take is hard to judge.  Either way I’ll be keeping an eye out for more by Gavin Smith.

I gave it a rating of 4 stars as well.