The next Disability Blog Carnival will be hosted later this week by Retired Waif. It’s theme is death/spirituality/end of life issues. Which is something I’ve been thinking about lately and so is an apt theme for me.

Margo, who writes over at Funky Mango’s Musings, is doing a PhD on physically disabled people’s attitudes to end of life issues. Or some such similar wording. And at the end of the month I’ll be traveling to Milton Keynes to meet her and take part in a focus group she’s running as a part of her research. I’m really looking forward to it for three four reasons.

1. I get to meet Margo
2. I think this is a really interesting topic
3. There is a very slim possibility that there will be shopping opportunities.
4. I get to leave this godforsaken place and go somewhere much more interesting for the day

I’ve been talking to a few different people about going to take part the focus group. Their reactions have for the most part surprised me.

Some other CAB people because I swopped days so I could go. One person wondered why a physically disabled person would have different views to an able-bodied person. She also suggested that someone like me who has been lifelong disabled is not a good person for the research because how would I know how being disabled affected my views. It’s an interesting point but I found the whole conversation frustrating because how could the views of disabled and able-bodied NOT be different?!  I tried to explain but I don’t think she understood, I probably could have done a better job but I’m not sure it would have made a difference.

That was just a very brief conversation and wasn’t overally surprising to me. Different people have different opinions and levels of “getting it” when it comes to disability and that was sort of what I would expect from that person - someone who I don’t know particularly well and who I’ve never discussed disability, disability identity, and disability culture with.

My Mum also wondered why you would assume that the views of a disabled person would be different to an able-bodied person but as soon as I started explaining it she got it and got it properly.  I do have to say that I had a harder time with her wondering than with the above person because if it can be so obvious to me but not to my own mother who has spent the 26 years of my life so far walking the disability path alongside me then just argh.  But I actually think now it was more of a case of not thinking about it because as soon as I talked about it she got it.  And I know how hard it can be to think on the fly so to speak - particularly about things that are so “big”.

Another CAB person on another day made the comment that she’s noticed that attitudes to end of life issues do vary between disabled and able-bodied people. Her comment was that everyone around her age is scared they will get Alzheimer’s - the inference there I think being that disabled people are less worried by such things and also it seemed to be implied that euthanasia is viewed differently by the different groups. The interesting thing here is that this is someone I know better - someone who has seen me struggling with access and all the other crap that can come with a disability. And also is the person who first mentioned Ashley X to me if only in passing.

I tend to agree with that opinion. As a friend who has ME and who has been in a wheelchair at least as long as I’ve know her (seven years) put it - we know that health isn’t everything. I might not go so far as saying that health isn’t everything because I’m not sure health really comes into my views. To me the whole thing comes down to the validity of disability as a way to live.  Ugh, that’s a horrible sentence.

Anyways, what I was trying to say (I think) is that a lot of people, doctors and otherwise wonder how we can have our disabilities and be happy, how we can say that we love life, enjoy it etc when we spend our lives on wheels or with other “differences”.  Which is why we end up with cases like Brent Martin, Ashley X and Katie Thorpe and even, god damn it, Terri Schiavo.

As long as my people are being treated and abused and even killed then my views on The Three D’s will always be different to those who don’t live this sort of life.  They have to be.  Because no one who isn’t disabled can understand how things are and why that sort of treatment is truly wrong.

Two final things:

I read Souvenir by Therese Fowler last week.  It’s a story about love and life and it’s brilliant.  But it’s also, inadvertantly it feels, a story of disability.  The main character is dx with ALS part way through the book and struggles with the idea of suicide and euthanasia throughout the book once diagnosed.  She is a doctors (the main character, Meg, I mean) and at one point comments that most doctors are in favour of euthanasia.  It’s a brilliant, brilliant book and one I want to write more about here.  But that’s a scary, scary thought.

and this is a great quote that I’ve shared here before but which seems apt for this entry and this carnival.

Not only do physically disabled people have experiences which are not available to the able-bodied, they are in a better position to transcend cultural mythologies about the body, because they cannot do things the able-bodied feel they must do in order to be happy, ‘normal,’ and sane….If disabled people were truly heard, an explosion of knowledge of the human body and psyche would take place.

~ Susan Wendell, author of The Rejected Body: Feminist Philosophical Reflections on Disability

Welcome to the 39th Disability Blog Carnival.  In case we haven’t met before, I’m Emma.  And our theme this week is “If I knew then…”  I think we’ve got some great posts here and I hope you will enjoy it as much as I have putting it together.  Please take the time to comment on some of the posts, it’s the only payment most bloggers get and it does mean a lot.  Also, may I suggest taking the time to get to know some bloggers you’ve not met before beyond the post of theirs I’ve shared here (if that makes sense!).  One of the things I love about hosting the carnival is going to new blogs and meeting new people.

Cheryl presents What I’ve known: a DBC post in which she talks about that age old problem of mobility and weight. Personally I seem to have the opposite problem to her in that I am very overweight and it does affect my mobility but the comments make it harder for me to do anything about it. But I’m like her in that I agree when she writes “The theme for the 39th DBC is “if I knew then…” Sometimes what you’ve known can be so much more damaging then what you didn’t. I’ve thought about my weight every single day for the last 7 years. That isn’t healthy.”

She also took the time back in January to answer 10 Questions. They are the sort of questions people ask a lot about disability and being disabled. And in one of them she considers what she’d have like to have known when she was 11. Again, reading that it really makes me think I must make the time to get to know Cheryl better.

“Crazy woman says ‘what’?” is a blog entry written by Liz. Liz is not a disability blogger but she discovered Blogging Against Disablism Day and here shares a conversation she had with her son and how a lesson she learned from BADD changed her views and influenced how she is teaching her son too. Welcome, Liz and thank you for taking the time to read and to learn. It makes me very happy to see that events like BADD really do make a difference.

Athena, Ivan, and The Integral present 39th Carnival: If I knew Then « Athena, Ivan, and The Integral posted at AthenIvanIdx’s Weblog in which they ponder how different things might have been on several different fronts if they knew then

So much of Twxee’s post had me nodding along in agreement. I could quote it all, but I will just share this small part and send you to River of Jordan to read the rest:

“I wish just one doctor or other “professional” would have told me that yes, your child may have some medical issues, but above anything else, he’s a KID.”

If Kristina had realised just what Charlie saw earlier she might have viewed that futon differently - A Special Find tells the story of value found where it wasn’t expected.

Living life with CP, I’ve learnt many lessons along the way. They have been good lessons, bad lessons, hurtful lessons, and best thing that ever happened to me lessons. I believe I learned them all at the time that was right for me to learn them. But there are one or two which I can’t help wishing had been a part of my life earlier than they were. When I was 13 I learned that CP was forever. And it wasn’t until I was 17 that I realised that CP is ok, it doesn’t matter. CP defines me it does not confine me to quote a long ago entry of Dave’s. I think that is a lesson which might be known as acceptance or possibly even learning to love yourself as you are. Because, truly CP or other disability isn’t a bad thing. Possibly I should note here that I think acceptance as a child is very different to acceptance as a teenager (possibly even as an adult) and different levels of that are required at different times. But that’s a whole nother entry. Anyways.

Heike has three kids, two of whom have CP. In Lesson from my Son she shares the story of when he realised that his CP doesn’t matter.

Letter To a Kid Like Me. Ettina shares what she wishes she had been told when she was younger. “Everyone is valuable, everyone has some good in them. No one’s perfect. Normal isn’t perfect, in fact you may have noticed normal has some problems with it.”

Come on People Just Leave Her Alone! Just because we have disabilities doesn’t mean we are helpless and need rescuing every five minutes. In that entry, a reference is made to this entry at Chewing The Fat. Another girl with a disability and another attempt at forcing unneccessary help. But a wonderful solution. And one that I’d love to try out myself. If only I had the nerve.

One thing I wonder sometimes (or often, it seems lately) is whether able-bodied people would have made different comments to us or about us or thought twice when offering help or even forcing it on us - if they had known just what we thought/feel about it and how we would react. Doesn’t She Know is a little bit off topic for this edition of the carnival and isn’t overtly about disability. But I like it and it’s my edition of the carnival. And, more importantly, it touches slightly, briefly, on that subject, the one that has filled my thoughts, plagued them almost, so much lately.

Dioskouroi. Love this entry and the comments say that the title is apt. I have no clue what it means though.

Laura Gilmour presents I Would Have Had to Miss the Dance posted at Touched By an Alien: Life as I Know It. This is an entry that makes me very, very happy as I too love that song (The Dance, Garth Brooks) and think the lyrics Laura quotes really do reflect well on disability. The full lyrics to the song are here.

What the hell, it’s a really cool song, one of my favourites in fact, lets have the video here too.

Thirteen is an evocative post about the author’s first days at the state school for the blind…  and with a little bit of look back.

On The Frontier of a New Kind of Cancer Survivorship is well worth a read.  And lets just say that it sums up the “If I knew then…” theme in one.

Alison wrote about what she learned living in a L’Arche community, and how it informs her doctoral work on medieval disability history in “The doctors told us you’d never amount to anything, Jane. But look around…” posted at The Furnace of Doubt (love the blog name!)

Philomena recently went out in a wheelchair for the first time.  In I live here now, thoughts on loosing able bodied privilege (Part One) she writes about that experience and the lessons learned.  And she continues on that theme and with those thoughts in Tilting the world: thoughts on loosing able bodied privilege (part two)

Finally we end with a post which has had me thinking of Frank Sinatra and his song My Way ever since I saw the title of it in my e-mail in box.  Shiloh gives us Regrets: A Useless, Self-Defeating Passtime

“Regrets… I’ve had a few, but then again, too few to mention…”

“I think it was perhaps the most important thing that happened to me. It formed me, guided me, instructed me, helped me, humiliated me, all those things at once. I’ve never gotten over it, and I am aware of the force and power of it.”

~Dorethea Lange, on disability

The 37th edition of the Disability Blog Carnival can now be found over at Stacey’s blog!

I wrote briefly about my Naidex 2008 experience in my BADD post for this year. But I also wanted to write more about it.

I just sent my friend Mary an e-mail and I’m going to copy and paste what I told her about Naidex in here because that’s just easier then trying to say it all again.

A dear friend managed to get the day off of work and went as well. So even though she lives here we traveled separately and I met her up there (only two wheelchairs can be on most trains due to health and safety and we couldn’t find a train with both spaces free but even if we had we would have been in different carriages so it made no difference).

First when I got to Oxford I was met by a member of staff who I’ve known for years as I travel there so often. And as always he made me smile and laugh. There was another person waiting for assistance onto the train I was waiting for and he was most decidedly trying to make it *very* clear that he wasn’t with me or with John (staff member), particularly when our conversation about the sheer number of people they’d had to help on trains to the NEC/Airport (same station serves both) that week degenerated into flying arm movements and John singing “I believe I can fly” to me. I also got told that I got the wheelchair space I’d been assigned was in first class which means I got a free breakfast (cooked to order bacon roll) and as many drinks as I wanted on the train. I got the same thing (but a free panini this time) on the way back.

Then wandering around the NEC and looking at all the new wheelchairs and other things was fun. But what was most fun was being in the majority for once. The fact that everywhere you looked there were wheelchairs and blind people and people with sticks and hearing aids. And that we seriously outnumbered anyone else. The fact that for once no one stopped us to ask stupid questions or spoke as though we couldn’t hear them. No one asked where our carers were and no one batted an eyelid when we were our silly outrageous out there selves. We did get some rolled eyes and laughs but no “oooh don’t do thats” and no “is that safes?!?!” Even when we decided to have a race on the way back to the station everyone just grinned and shifted outta the way. And when people remembered us it wasn’t “oh yeah the two girls in wheelchairs” but it was “oh yeah the leprechauns we already gave you our info” (Elisa wore a shirt which said “the leprechauns made me do it”).

When we laughed at the sheer number of things that had dolls or teddy bears in demonstrating how a person would use them people got it - and when we started joking about how the plight of these poor disabled teddies was hidden and must be brought to the world’s attention the people on the stands laughed too.

And when we went back to the station I had an hour before my train but the staff went above and beyond to try and find me a wheelchair space on an earlier train when they didn’t have to do that. So Elisa went home and I hung out at the station for a while longer. Another lady in a wheelchair tried to get on the same train (she hadn’t booked in advance as I had) and was extremely rude to the station staff - screaming disablism and threatening to sue. She tried to get me involved and I pointed out to her that 1) it’s a health and safety issue so that if the train crashes the emergency services know what the maximum number of chairs is on and where they will be and I am all for that idea. and 2) Being that Naidex is basically disability central I would never have considered not booking and I was just grateful they tried to get me home early. I don’t know what happened to her - but I do know that the staff were quite shaken up because I went onto the concourse to wait and they found me and thanked me for sticking up for them. They let me go wait in the first class lounge with it’s nice view and free biscuits and drinks and papers and nice clean disabled toilet.

I really felt very special by the time I got home.

One of the things I don’t think I have made clear properly either in this e-mail or in my earlier writing about Naidex this year is how much of a cultural experience it is/was for me.  The purpose of the day is not to feel like you are part of a huge group of PWD and that you are all coming together and having a shared experience.  It’s to learn about equipment and organisations and adaptations and all that jazz.  I have no idea if the organisers are even aware of how powerful of an experience it can be.

But for me - it is a powerful experience.  It blends in with my identity as a disabled person and it helps me to embrace my culture.  Being in the majority like that is HUGE.  And even though I didn’t speak to any PWD about identity or about culture and I didn’t really speak to many people other than sales people having a day like that every once in a while just really helps me.

***

Changing the subject slightly, but also not, I wanted to also touch on the use of the term Crip.

I am a crip.  Or a cripple.  Or whatever the hell I want to call myself.  Hell, I’m also Emma.  But just lately whenever I refer to myself as a crip or a cripple I get rubbish about how I deserve dignity and I shouldn’t belittle myself like that.  Calling myself a crip is acknowledging who I am.  It’s saying “yup, so what?!  I am disabled.  What’s the big deal.”

It’s a slightly annoying experience even though I know those who say that to me are well meaning and think they only have my best interests at heart.  We just don’t seem to see eye to eye on what my best interests actually are.  Part of me thinks I should start moaning when people refer to themselves as being able-bodied or healthy and see if they get it.  But then the realist in me knows that they won’t and they’d just think I’m weirder than they already do (not exactly a bad thing but…)

One thing I really love is slogan tops.  I am suffering at the moment from a shortage of appropriately sloganed tops.  And I have never had any disability identity or crip culture related slogan tops.  This is a situation which I am planning to rectify with some rapid action in the very near future.

At naidex I did see a couple of slogan tops - one only came in child sizes (or thats all they had) and it said “Wicked on Wheels.”  I really want that shirt!  I forget what the other said, it wasn’t as interesting.  Might have been something about staring?

Anyway so ever since then I’ve been toying with the idea of making myself  a top that says CRIP on it.  And then having an acronym underneath it.

One of my friends suggested Cool Respectable Independant Person.  And my brother suggested Carrots Rhubarb Ice cream Pasta.  but neither of those really appeal to me.

I also looked at the phonetic alphabet and it would be Charlie Romeo India Papa which is slightly more interesting and cool but still not quite right.

So does any one have any ideas?  Basically  years ago you used to be able to get those rip off FCUK tops that said Funky Cool Ultra Kinky on them and I’m thinking something similar something which screams “Em!” but I can’t think what it is

A while back I spent some time browsing the Blog Carnival site.  I love the Disability Blog Carnival and I was wondering what other carnivals there are out there.  Sadly there are a lot of carnivals listed that would interest me but which seem to have been abandoned after only one or two editions.  That makes me very happy that our very own Disability Blog Carnival is going so well and will soon be publishing it’s 34th edition.

Anyway, I just got a notification that the latest Carnival of Quotes is up - and that an entry I submitted is included.  I love quotes and I love this carnival which I’ve been following for a little while.  I’ve not had a chance to read many of the other submissions yet but this does look like a great selection - particularly the quotes on martial arts which have been included.

And if you’re looking for The Disability Blog Carnival, the current edition is over at Andrea’s Buzzing About and can be found, here.  The next edition will be at Reimer Reason a week on Thursday and has the topic of “The Hardest Part.”  Which I think is a Coldplay lyric?  It’s a topic that’s really making me think and that I’m looking forward to tackling.   Submissions can be made through this form

Anyway, I have some carnival submissions to read… and some thinking to do… I love the way the quotes make me think and muse and generally ponder life.

The next edition of the Disability Blog Carnival is on Thursday over at Wheelie Catholic. It’s theme is Appreciating Allies.

For me that’s something of a tough theme to think about at the moment. I don’t mean to seem “bah humbug” or like I don’t appreciate my friends and family in saying that. Because I do. But currently I’m at something of a low point and that’s how I feel.

Without going into long gone irrelevant matters I will try to explain some of my thoughts on Allies in the “fight”.

I have a friend with similar disabilities to me who frequently complains that I have much more in my life than she does. I mean in terms of my having an adapted flat, of having various pieces of equipment and mostly in my independence - in living alone. Maybe from her point of view I am luckier than she is, and maybe I am more able than she is.

I don’t think it comes down to how “affected” she is compared to me or any such.  That’s all subject to your perspective and as such is subjective.

Personally I believe that I have everything I’ve got not because it was given to me but because I made it happen.  Yes, I have an adapted flat near to town and I live alone when a lot of disabled people don’t have that.  Yes, my Occupational Therapists and Social Workers and many many other public sector staff members did things for me that they don’t do for the majority of the people out there.

But that’s because with the help of my family and a few good friends I set goals for myself. And we found out how the system worked and made it work for me.  It could possibly be considered that I played the system.  I didn’t.  I just didn’t allow it to stop me.

When I left uni in 2004 I was told that as long as I lived with my parents I could have no support from social services.  My Dad had just had spinal surgery, my Nanny was in her 80s and not in good health, I have two younger siblings and my mum worked full time.  Housing services said I’d have a very long wait for an adapted flat as long as I could live with my parents.  I experienced a worsening of my depression.  My care needs very nearly could have been the straw that broke the camels back.

Hello rock, this is a hard place.

My parents made me legally “homeless”.  I attended many difficult meetings with the support of a good friend and/or my parents.  We all wrote letters explaining the situation.  My GP at uni backed me up.  So did my one at home.  So did my parents.  My so called social worker wrote reports and got me a great OT on board.

We hated every minute of it and I cried many bitter tears.   The staff acted as though we were being unreasonable and my mum and I both felt very badly.  But we knew that for us to survive and for me to thrive in my new life away from Uni this was what we needed to do.  The independence I had spent four years in Stoke gaining had been hard won, I wasn’t giving it up without a fight.

In the end we started trying to get support and services set up for me in April 2004.  I finally made it into a permanent adapted flat in December 2005.  For a while it seemed like every month that passed there was a new set back, another piece of bureaucracy that wanted to deny me the basic services my human rights entitle me to.  Every single time I saw someone who even had the smallest chance of being able to help me I explained the situation, I explained what I was doing to resolve it and asked for their input.  Many times I would experience cross purposes where one person at an organisation would agree to do something and then that would be denied by another.

There were lots of steps and moments along the way that I haven’t mentioned here.  There were times when it got too much for me.  It was a lot more stressful and difficult than reading this would seem.  It was a lot more stressful and difficult than it should have been.

I do appreciate all the help and support I received to help me accomplish my goal.  But I do feel very strongly that most of it came about because the professionals had to do it.  Because I fought them and pushed them.  Because I screamed and cried and generally made a nuisance of myself.  They were paid to be my so called  “allies” in the fight and they pretended they had my best interests at heart.   Yet they weren’t interested in Me, Emma, I had to fight them for that help.  I had to fight for what I was legally supposed to receive.

The friends and family who supported me are/were my allies.  I hope they realised how grateful I was (and still am).

I’ve written before about how I believe that having CP is what is right for me.  And about how if I didn’t have CP there are many experiences that would have been different.  Some good; some bad.

There are things which CP means I do differently to everyone else - a friend’s dad once told her in my hearing that she should be grateful because there’s plenty she does I can’t (she has a milder form of CP).  I told him I do everything everyone else does but I just do it differently.  I don’t think he got it.  He made out that he did but he was humouring me.  i don’t think many people get it.

My life would be different if I didn’t have CP; very different.  I can’t tell you what that would be.  It has never happened and it will never happen.  But what I can tell you is that it wouldn’t be any easier.  Life isn’t easy.  It’s not supposed to be.

“The soul would have no rainbow if the eyes had no tears”

That’s an American Indian proverb and is very, very true in my opinion.

I was listening to my iPod this morning as I wandered on my way up to the bureau.  I shuffled it before leaving the house and one of the first songs that came on was Especially for You by Kylie and Jason.

That used to be one of my absolute favourite songs when I was  a little girl.  And listening to it brought back a memory which I think was about three weeks before my 8th birthday.  It wasn’t a happy memory.  At the beginning of December that year I was hospitalised and I had my last surgery (hamstring and ankle releases).  I was on the childrens ward and one day someone from hospital radio came to see me.  They asked me to chose a song which they would play and dedicate to me.  I asked for something by Kylie or Jason.

Fast forward to that evening or maybe the evening and I had to have an injection.  They had to hold me down to do it and I screamed and screamed.  At the same time someone took the headphones to the hospital radio and put them on me.  Especially for You was playing - especially for me.  I listened to it as I screamed and I cried.

And as I listened to that song this morning I remembered that long ago day.  And yes, I could have done without that experience, without that memory coming back to me.

18 (argh! 18?!?!) years later it can safely be said that long term that surgery probably didn’t have the success we wanted from it.  Sometimes now I look back (even over the last four or so years) and wonder just how the hell I used to be able to do things that I can’t any more.  Because things have changed so much.  Maybe without that operation (or any of the others) things would be better than they are now but equally they may be worse.  I really don’t care either way.

As with several other experiences I have had, I’ve been there and I’ve done that (hell I even bought the t’shirt!).  And if I had of known what the outcome would be I might have chosen differently.  But I’m glad I didn’t know.  Because each experience brought me blessings and good things - things that if I’d missed out on the pain I’d have missed out on.

I love who I am now.  Even if it did take pain, suffering and something of an ongoing fight to get here.

One of my favourite songs is The Dance by Garth Brooks

And now,
I’m glad I didn’t know
The way It all would end
The way It all would go
Our lives,
Are better left to chance
I could have missed the pain,
But I’da had to miss the dance.

The dance makes it all worthwhile.

Welcome to the 31st Disability Blog Carnival. In which Dave saves the day, Yanub causes me to embrace my inner geek, Lisa blows me away and The Goldfish makes me wish I was much more intelligent.

Our theme for today is Superman. And I must admit here that I knew I was giving a theme that was a little out there. But I wanted to do something a little different and see what happened. I had my own ideas about how this carnival and it’s submissions would turn out. I was completely wrong. It’s much better.

I can’t stand to fly
I’m not that naive
I’m just out to find
The better part of me

I’m more than a bird:I’m more than a plane
More than some pretty face beside a train
It’s not easy to be me

Wish that I could cry
Fall upon my knees
Find a way to lie
About a home I’ll never see

It may sound absurd:but don’t be naive
Even Heroes have the right to bleed
I may be disturbed:but won’t you conceed
Even Heroes have the right to dream
It’s not easy to be me

Up, up and away:away from me
It’s all right:You can all sleep sound tonight
I’m not crazy:or anything:

I can’t stand to fly
I’m not that naive
Men weren’t meant to ride
With clouds between their knees

I’m only a man in a silly red sheet
Digging for kryptonite on this one way street
Only a man in a funny red sheet
Looking for special things inside of me

It’s not easy to be me.

To me, that song is a song that sums up disability. Or at least the way in which we can appear to the people who don’t take the time to get to know us properly, to get beyond our exterior and see who we really are inside.

It’s something that I wrote about earlier this week in this entry. And it’s something that Lisa wrote about in Can I Just Have This Made Into a T Shirt and Call It a Day? In saying the following, she totally blows me away and says something I’ve wished to say, something I’ve tried to say before.

If you are going to call me remarkable, amazing, inspiring, or whatever other adjectives you want to use to put me on a pedestal…it better not be because I am disabled, or because I partner with someone who is disabled. It better be because I have won an Olympic Gold Medal or a Nobel Peace Prize or a Pulitzer or because I have brokered a treaty between waring nations or because I can tie a cherry stem with my tongue or because I have actually DONE something remarkable. And “coping” with disability DOES NOT COUNT. I didn’t do anything to be disabled, I was given this gift.

Shiloh or Sunny Dreamer is someone else who agrees with me about the above song. She wrote about it in Superman (it’s not easy). Shi also seriously agrees with me on the whole Superman rocks thing. Her blog is worth a visit simply to look at her current layout which is Superman all the way. Description - it has a black layout which looks kinda like it’s a starscape. On the left there is a picture of Teri Hatcher as Lois Lane. She’s wrapped in the Cape and underneath it says I (heart) Superman! The text and links are blue red and yellow - Superman colours.

She also offers us some Quotes from Christopher Reeve in which she shares some of his wisdom.

“I refuse to allow a disability to determine how I live my life. I don’t mean to be reckless, but setting a goal that seems a bit daunting actually is very helpful toward recovery.”

It seems that we have a lot of contributions from people called Dave or David this go round. Here’s the first, Healthcare Heroes posted at DAWG Oregon.

David has written about what it feels like to have CP. It’s a topic I’ve wanted to tackle for a while but haven’t managed. I know that this is something a lot of parents want to know about so it’s included here: For Parents: My Cerebral Palsy. As David writes, CP is different for each of us. But, reading that, not only was I struck with the vast differences in our experiences but also in the similarities. Similarities I hadn’t expected their to be. One of the best things about disability blogging in my opinion.

Not everyone needs to wear their underwear on the outside to save the day - Or at least not if there name is Dave Hingsburger, who stands up for disability rights, plenty of other stuff and… toast.

Ruth gives us more proof that Not all heroes wear tights over at WHEELIE CATHOLIC.

Yanub shares the story of a blind acupunturist. And she is very right when she says:

I don’t consider Juliana Cumbo to be a superman, but
I do consider the rejection she has twice received for her
application to be a stark reminder that, in reality, there are people
who would tell Daredevil that his help was unwanted even while they
were being robbed at gun point, so strong is their equation of
disability to danger. In Cumbo’s case, the facts show that being a
blind acupuncturist does not require superhuman ability, but is
really something that an average person can achieve with training,
exactly like being a sighted acupuncturist.

That’s a post I found very exciting because it uses Star Trek to discuss disability and that’s just… wow!

Next we come to philosophy, disability and an earnest need for me to visit wikipedia and read up on some of the points raised. Yes, once again The Goldfish shows how intelligent she is and leaves me in her dust.

Reports from a Resident Alien :: Reply to “Aspie Superpowers and Teenagers” posted at Report from a Resident Alien is an on topic cross blog conversation about superpowers!

No Singing Allowed: Assumptions and Other Nonsense is a long but thought-provoking riff on a local school scandal. I’ve quoted from it below and it’s posted at the wonderfully named Existence is Wonderful.

“Fundamentally, what I want people to understand is that their very definitions of what ranges of cognition, perception, and action exist are probably far more limited than they should be, and that there are more valid ways to be and grow in the world than they can easily imagine.”

Making a Difference an entry from Amber at Frida Writes talks about disability culture and the supermen and women of it’s recent history.

Gordon C. Cardona shares a secret in Gordon’s D-ZONE: Confessions of a Shape Shifter posted at Gordon’s D-ZONE.

If there’s one thing you need in life, You gotta have Faith Daisy tells us about it, and about a disabled dog.

Did you know that various political figures have “secret identities” just like the man of steel himself? Vikki Washington reports.

Amputee Yoga and the Superhero Lifestyle is posted at Moving Right Along and once again shows just how much is possible.

Jessica Galli was selected as 2007 U.S. Olympic Committee Paralympian of the Year so shares Rolling Pix.

~ podcasts ~ which posted at ~ Urbania to Stoneheads ~ is Kethry’s chance to explain what it takes to make a podcast “super”.

The next carnival will be hosted by Shiloh over at Sunny Dreamer. It’s theme is “Standing Outside The Fire”. It’s on the 28th and submissions are due by the 25th. If you prefer not to use the blog carnival form, submissions can be e-mailed to celtic_me2000@yahoo.com

I hope you have enjoyed reading this edition of the carnival as much as I have putting it together. They say you should always end it with a song so… here goes

Tarzan wasn’t a ladies’ man
He’d just come along and scoop ‘em up under his arm like that
Quick as a cat in the jungle

Clark Kent, now there was a real gent
He would not be caught sitting around in no junglescape
Dumb as an ape doin’ nothing

Refrain:
Superman never made any money
Saving the world from Solomon Grundy
And sometimes I despair the world will never see another man
Like him

Hey Bob, Supe had a straight job
Even though he could have smashed through any bank in the United States
He had the strength, but he would not

Folks said his family were all dead
Planet crumbled but Superman, he forced himself to carry on
Forget Krypton and keep going

(Refrain)

Tarzan was king of the jungle and lord over all the apes
But he could hardly string together four words:
“I Tarzan, you Jane”
Sometimes when Supe was stopping crimes
I’ll bet that he was tempted to just quit
And turn his back on man
Join Tarzan in the forest

But he stayed in the city
Kept on changin’ clothes in dirty old phonebooths
‘Till his work was through
Had nothing to do but go on home

(Refrain)
And sometimes I despair the world will never see another man
Like him

The next Disability Blog Carnival is on Thursday over at Ryn Tales. And it’s theme is what professionals should know.

The short version is that they should know/realise/understand that disability is not a “one size fits all” experience. In more ways then one. Obviously there are different diagnosis e.g. CP, MS, whatever and there are different types of disability e.g. sensory, mobility etc. But also within diagnosis as well - my experiences of disability are not the same as those of Margo or Amanda or Dave and my experiences of CP are not the same as Shiloh’s or Moo’s or David’s or anyone elses.

So kindly don’t tell me or my parents or anyone else that “people with CP can’t do….” or that “our disabled people do X so Emma WILL do X as well.”

It don’t work like that. I’m not “Cripple who’s name happens to be Emma” but “Emma who happens to be a cripple and have CP.” I’m a person first.

Specifically I wanted to talk about carers like the ones I have come into my flat a few times a week. That’s a “priviledge” I pay for out of my own money and not one I think will be able to continue for too much longer. And it is very useful.

But lately a lot of my care visits have left me going “For the love of GOD people rah rah rah whatever”

I accept that home care is a tough job. Particularly for the people who come to me and do an hour with me, 15 minutes with someone else maybe and half an hour with a third person all throughout the day. They are constantly on the go and they are frequently pushed for time. However I don’t want to be hearing about how much you hate your job/want a new one or whatever every time I see a carer.

I had four visits last week from three different carers - two of them had serious “I hate my job” moans at me. I’m sorry you hate your job or that every single client you’ve had today has asked you to do the same thing I’ve just asked you to and you hate that and your bored. I know after three years or so using the agency that the organisation behind the support can and frequently is somewhat lacking. But what the hell am I supposed to do about it? I’m not about to apologise for needing support and it’s not like I can go “oh well don’t bother to change my bedding, I’ll do it myself.” I CAN’T DO IT.

There was a bit of an organisational problem with the third carer last week (who came to me twice). She was late to me. But give her her due, she just said she was sorry she was late but she had been scheduled 10 minutes traveling time and it was rush hour and she’d been in X place - to which i just “went yeah someone didn’t think about that did they?!” because i’d say it takes longer then 10 minutes here from there not in the rush hour - more like 20+. I then knew she might be late next time and we moved onto the more important topic - of how I was and what did i want doing.

Their time with me is not supposed to be a break. A good while back now (might be two years?) I complained to my care agency over a stupid little thing. A cup of coffee.

But the issue wasn’t the coffee. it was what it represented.

This carer had been to me once, maybe twice before. She walks in and we exchange the usual pleasantries. She wanders over to my fridge and I start to tell her what dinner I want making. At which point in time she pulls out the milk and shuts the fridge walking off again. Pulling a mug out and searching for some coffee in my food cupboard she tells me “Wait a minute, I’m going to make a coffee, did you want one?”

As far as I was concerned she could have her damn cup of coffee and I never said anything to her. But equally I felt that she should ask first because she isn’t “my new best friend” or a family member or whatever. She is here to work and to help me. And the most important thing a carer can do, any professional can do is to respect me. I don’t even go to my friend’s houses and help myself to drinks without asking.

I wouldn’t have said no. I recognise that sometimes people need a drink and if its hot or I think of it I do say “hey help yourself if you want a drink” and my regulars know I don’t mind - but they also respect the fact that it’s my house and it’s polite to ask. It’s the same with things like the loo - if you need to go your welcome to use mine but don’t just disappear and leave me wondering where you are.

Maybe it’s petty for me to say “you can but ask first” about these things but I just think it’s a sign that they respect me and don’t want to take over.

My carer with the “coffee problem” was never sent to me again - I refused to have her back and she has since left the company.

Another thing with carers relates to the not taking over thing but is kind’ve harder to explain. I have regular carers who know me and my routine well and I have people who don’t. My most regular carer knows that I will tell you what i want but also knows what I regularly do want and if I go to answer the phone or have a friend over or something and leave her will get on with the small bits - washing up, sweeping the floor, emptying the bin without being asked but does always check if theres anything else I want.

Choice is huge when there are things you can’t do yourself - for example I can’t change my bedding but I can tell you which clean set I want putting on. It’s another sign of respect and of regaining a little control.

Equally however as much as I advocate for choice and waiting to be asked - if I ask for you to do something generally I expect you to do it all (unless I state otherwise). Even if I don’t tell you specifically to do a certain part of it. Usually because I think it’s obvious that its a part of it.

Example being last week when asking someone to empty the bin. And they just emptied the bin. Didn’t put a fresh bag in and didn’t tie the old one up. And I discovered they’d not tied it by going to move it after they left and spilling the rubbish everywhere. That just annoys me because who empties the bin and doesn’t tie it up?!?! And also it’s a waste because my next carer then had to redo that and not what I wanted her to do.

So basically the best thing that carers could do for me is respect me and realise that I’m an individual. Some use of common sense, however, would also be more than welcome.

***

Finally, I am very excited to announce that the carnival after that is on Feb 14th and is HERE at The Life and Times of Emma. It’s theme is Superman.

The next Disability Blog Carnival has the theme, how do you relax, chill out?

Obviously my favourite ways to chillax are with a book or sailing or swimming. I’m also a big fanfic fan. But I thought I’d tell you about something else I love.

I love comedy and I happily while away many an hour on you tube or similar watching comedy clips. Particularly at this time of year when sailing is out and the light is bad which really affects my mood. I was a regular at the weekly comedy club at uni and really need to get back into live comedy.

One of my favourite comedians is Adam Hills. He is disabled (or a mutant as he prefers to be known) as he has an artificial foot. And he seriously cracks me up.

Another of my favourite comedy things is Mock The Week.

And behold - a Mock The Week clip from You Tube featuring Adam Hills and the panal laughing and talking about the fact Adam’s leg is held on by velcro. I didn’t stop laughing for the entire seven plus minutes of the clip

And another you tube clip of Adam is in this entry

One thing I love about his humour is that he doesn’t make a big deal of his disability but that he doesn’t shy away from mentioning it, laughing about it, even taking the piss out of it.

I was lucky enough to see him live when I was at uni (and also to have seen Laurence Clark live twice). I hope to go again sometime.

Oh and lets just finish with CPer Laurence Clark talking about what he gets mistaken for…