Basically RoCur is where there’s an account (often on twitter) where people take a week at a time to run it and share their experiences and tweet on the subject. Most of these relate to places – like with Oxford Is Yours I’ve been tweeting about where I’ve been and what I’ve done – but some relate to hobbies or jobs or organisations or anything else.
I’ve been enjoying it and have learned about a place in Oxford I’m going to visit soon I didn’t know about. I’ve also met a couple of new tweeters who I’ll follow from my own account when the week is over. And possibly have a couple of other places and events in mind I’d like to go to the logistics of which may prove tricky as they aren’t in places I can get to easy. That’s basically the point of rocur – to share tips, tricks, and experiences and recommend places and venues. The person who runs OxfordIsYours said to me last weekend she was looking forward to reading a week in my life and that’s basically what it is.
Admittedly days like today when I’m close to home and not doing very much it feels like a struggle to have anything relevant to the account to tweet. But on the whole it’s been an interesting and fun experience and I’m glad I’ve done it.
I’d really like to have a go at curating People of UK for a week. But what I’d really really like is for their to be a disability rocur.
And as far as I can tell there isn’t one.
I’m thinking about setting one up. I know of one other person who is interested in taking part. But I think we need more than that to set it up.
So I need help to do that. I need to know if people are interested in that. And if so
I need people to be curators.
I need people to signal boost this message
And I need people to read and comment and tweet and just generally try to use this as a way to make our already pretty awesome disabilty community online better and more of a community.
I was asked on twitter what definiton of disability I would apply and I’m going to go relatively wide and say you simply have to self identify as disabled. I am however going to specify that this is not at present open to carers because I want it to be a space where disabled people can share and speak for themselves.
Once I know that there’s some life in this idea and people are interested I will write up some more guidelines with specifics but basically it doesn’t just have to be about the disability side of being a disabled person.
Let me know in comments if you are interested or tweet me @FunkyFairy22
Welcome to the first edition of the new version of the Disability Blog Carnival. It’s great to hear from so many people who are glad to see it continuing. I’ve only had two submissions but I’ve also spotted a few interesting posts so I’m including those too.
First we have this post from The Goldfish – The Sessions: Discussing Disability and Sex Work. The Sessions is a film based on an essay by a disabled man discussing his use of a sexual surrogate. I’ve not seen it as it’s not been on locally to me but I’d like too. The Goldfish manages to discuss the issue from many angles and raises several good points. As always I come away from her longer posts with plenty to think about and feeling like I need to go back to it when I’ve had my thinking time and reread it. There are no spoilers for the film in her post but she does link to the original essay which obviously, could be spoilerish.
As I think I wrote when I posted the call for submissions one of the things I like about the carnival is finding new blogs. Yasmin’s blog is called Damn The Muse and is a new one to me. She submitted her post Attempting to remain disABLED about her scooter breaking and trying to fix it herself when the system is causing problems and delays in doing so.
Now we come to a few posts that I’ve spotted on my travels around the net:
In Brightest Day: Ableism in Harry Potter contains some of my favourite things. Harry Potter and a discussion on disability issues, specifically the ableism (referred to by some as disablism) faced by Remus Lupin and Gilderoy Lockhart. I knew that there were several disabled characters in Harry Potter but Lockhart hadn’t occurred to me.
Awareness can be a bit of a touchy subject. I have done disability awareness talks in the past. But what I always try to do with those is show that being disabled doesn’t have to be a bad thing. It’s got it’s negatives and it’s challenges but that’s just life for everyone be they disabled or not. Facebook seems to forever be full of posts encouraging me to post this or sign that or share this status to raise awareness of CP or childhood cancer or special education (every week seems to be special education awareness week to judge by facebook). And a lot of the time I read those things and I scroll past thinking “why do I need people to be aware of my CP? What difference will it make to me.” I’d much rather be known as Emma and show all the interesting things about me than be known as the girl with CP who only talks about disability stuff. Besides, what would you rather read on my page, the fact I need you all to be aware of CP and the fact it’s my disability or the fact I had chocolate digestives for breakfast (I didn’t today but that was my status a couple of weeks ago) and finally got to leave the house on Friday after being snowed in for a week?
It can be a little bit controversial to share that I don’t often get the point of awareness raising posts so to be honest I’ve been keeping my mouth shut and my fingers away from the keyboard. But that’s why this post from Grace Quantock (another new to me blog) Why I don’t support awareness raising had me nodding along and saying “yes” as I read it.
I spent a lot of yesterday giggling at the “normal awareness” posts on facebook which were started by Disability and Representation and seriously cracked me up. A tongue in cheek look at the inspiration porn disability photos that frequently show up online. Although I strongly suspect based on comments I saw that a few nondisabled people didn’t get it! Tonight I discovered their blog and How to talk to normal people: a guide for the rest of us has totally made my day. I love it.
One thing I’ve really enjoyed about blogging over the last few years is the Disability Blog Carnival that’s been run by Penny Richards from the Disability Studies, Temple U blog. It’s been a great way to meet new people and new blogs. And it’s made me think and learn and write about things I probably wouldn’t have otherwise. I’ve especially enjoyed the many times I hosted the carnival on the various forms this blog has taken over the years.
With the plethora of social media out there now the demand for the carnival has died off and Penny decided that she wouldn’t run the carnival any more. I’m sad to see it going and offered to make something of a last ditch attempt to keep it running in a slight different form. Twitter and facebook are brilliant for links but if you miss the post you miss the link and it’s very difficult to scroll back and find them again. This is a collection that you can return to again if you want.
On the 28th of each month I will post a collection of links to different posts about disability and/or by disabled bloggers. Things that have caught my eye but also things that people send me. My plan is that for the first three months I’ll host it here to get it started but then from April I might see about getting different hosts and it moving around again. There will be no set theme of the month so with the exception of blatent advertising, and hate I’m not going to say “anything goes” but it pretty much does.
The first post will go up on Monday 28th January 2013. I’ve already got a couple of links in mind to share but suggestions can be left in comments here, tweeted to me @funkyfairy22 or emailed to email@example.com
I’m going to be hosting the next Disability Blog Carnival.
In honour of the London 2012 Olympic and Paralympic Games the theme will be Inspire a Generation. Which for those not in the know is the sort of catchphrase or tag line for the games. I’ve just come back from a four day trip to the Paralympics and I absolutely loved it. I will blog in more detail about my trip but it was definitely an amazing experience and I found it inspirational for more than just the sport. I really didn’t want to come home.
I thought Inspire a Generation was a good theme to use for the carnival. However the theme is not just about the games so if it makes you think of something different that’s fine. I have a few other ideas related to the theme but I’m interested to see what others come up with.
Here’s how this works:
You can submit older posts or write new ones
They need to be related to disability but don’t need to be written by disabled people
Posts need to fit the theme in someway but it’s not rigid
The deadline for posts is Sept 26th, I hope to post the carnival on 30th Sept.
You can leave your links in the comments here (first time comments are moderated to prevent spam), tweet me them – I’m @FunkyFairy22, or email them to firstname.lastname@example.org with Carnival or similar in the subject line please.
>The next Disability Blog Carnival has the theme “things that are therapeutic for you”.
I thought about many things when I saw that topic.
I thought about how I spent well over a year in counselling. And how part of me would like to go back to it again. I sort of miss that “safe space” feeling of being about to talk about whatever I want, say anything and not have to worry about what people think or hurting people because of it. The fact that counselling also helps to find other perspectives and ways of thinking about things is also great. I have a lot I’d like to get off of my chest if I did got back to counselling… but whilst I do miss the “safe space” aspect I don’t think I actually need full blow counselling again like I had before.
For a long time blogging offered me that safe space, but when I made the decision to be open and fully identifiable on my blog I lost that opportunity. I’ve gained so much more from that decision but with several friends and family members (as well as online friends) reading this… the social niceties and boundaries are there subconsciously again.
And I do have people I can say these things to… different people for different things and I’m not always fantastic at that, saying things then thinking maybe I shouldn’t have much more often than I would like. But also much less often than I used too.
That’s the beauty of a counsellor. They don’t judge, they aren’t someone you work with, or knows you or is related to you or a friend. They are just there to provide a listening in… safe space.
Considering I didn’t plan to write much about counselling, I’ve actually written a lot. And I’ve deleted a lot from this post too because I want to post this but am so frustrated with blogging right now and I don’t want to deal with the reaction the other stuff I wrote about counselling would probably get.
Other things I find therapeutic that I considered writing a whole post about were things like knitting and reading and swimming – things where i can just lose myself in the rythm of them and I don;’t have to think if I don’t want to but it also frees my mind to be achieving stuff and thinking about others if I want. Mindless and repetitive but with an obvious end result. I used to have really down days when I’d say to my counsellor all I can manage is to lose myself in a book and she said to me more than once that to be able to concentrate on a book is huge. So I don’t beat myself up about that as much. Those things are great distractions (all of them not just reading) when I’m feeling down as they take me away from my thoughts and feelings but don’t need much mental effort.
But I don;’t just love those things for that, I love them for so much more.
And for a long time I would have listed this blog as therapeutic for me… but as I said above I’m finding it a huge source of frustration this week (well, the last few weeks but especially this week). For the time being I’m still blogging because I want to complete NaBloPoMo.
All content copyright Emma Crees, 2006 – 2012 unless otherwise stated
>Welcome to the 50th Disability Blog Carnival. I am very impressed and happy that we’ve made it to 50 editions and very pleased to be hosting the 50th Edition.
Tonight (Matthew), our theme is going to be “I am” (apologies for the crap joke that only Brits will understand and is rubbish but I couldn’t resist!). Once again I thought the topic would bring one sort of submission and was both pleased and surprised by the difference from what I expected and what we have here.
First a warning that if you comment on my blog there is a high possibility I will go to your blog and find something I like. And if that happens and I’m hosting the carnival, well, you’ll find it there. That’s what happened when Erin commented on my blog for the first time this week. She’s written a poem called “My Name is Cerebral Palsy” which I really like. 16 is a tough age. 16 with CP is even tougher – I hated being disabled around that age and Erin’s poem reminds me of what it was like. It’s a very honest poem and although Erin describes it as slightly depressing I’m not sure it is. As a contrasting response I would offer a poem of mine, written in May 2006, It Doesn’t Have Me.
Next we come to something which I think is a first for the Disability Blog Carnival. Ricky regularly leaves comments on my blog (and maybe some of yours, I don’t know) but doesn’t have a blog of his own. I have attempted to convince him to set one up but he prefers not to. So I have posted the comments Ricky wanted to contribute to the carnival in a separate entry on my own blog and you can read them here.
One thing this topic seems to have inspired it lots of honesty. I think that’s brilliant because in my opinion only by being completely honest about our lives and our disabilities – both the good and the bad – can we truly bring awareness and change.
It’s not always easy to be so honest, particularly not on the Internet (unless you are an anonymous blogger, something I occasionally wish I was) so I really respect those who find it hard but do it anyway. Cheryl told me she wasn’t sure she’d have the guts to post this – I’m Thankful talks about the changes she has gone through since being diagnosed as bipolar.
I’m Not Dead says Elizabeth as she writes about her recent experiences and how Heaven is like McDonalds.
The Goldfish has been thinking about voluntary euthanasia and suicide. She has written two entries on the subject here and here. Oh and her off topic mention of daytime tv in the first entry along with the first three comments on there made me laugh. More real honesty there.
Truthfully I wish I was confident/secure enough to have that level of honesty in my blogging. Lately I’ve been left reading comments on several occasions thinking that whilst I welcome the comments those leaving them have missed what I was trying to say. I’m not really sure if I need to make my writing clearer from that point of view or if it’s just the natural thing of the internet whereby things (discussion in this case) doesn’t always follow the path you expect. With blogs and text you do miss out on a lot of the cues you would get in a conversation such as tone and emphasis. It’s not a bad thing here. Also over the last few months several people I know have mentioned reading my blog to me and commented in person on stuff. I love that people read my blog and it’s what I want. But I must admit that when people do so in person it makes me wibble a bit.
Ettina has posted a very appropriate piece for this topic (and it’s something I have considered writing many times but never fully done). Her Life Story post is well worth the time taken to read.
SueBabe is a blogger I’ve not met before but who has been thinking and talking about a lot of things I’ve been thinking about it seems from the entry she submitted (unfortunately I’ve had little time to read more of her blog and get to know her better but it’s on my list). And she’s Thriving Not Just Surviving.
Think Freestyle posted this letter to her blog wondering if she’d actually send it. It’s a great letter and it starts with “I am…”
Miss CripChick is feeling disappointed, hurt and betrayed. In Dear ADA Generation she shares those feelings.
Arin has shared how she thinks things would have been a lot harder without access to the blogs of people in similar circumstances and has written in Health Blogs about this and about other uses of blogs in the health field.
Ashley Kate is a cute kid whose been having a tough time lately. In Finally her mom, Trish, shares how she felt when someone finally told her “I’m going to be honest with you” and actually explained just why they were having so many problems setting up the needed infusion. It struck a cord with me as did her thoughts on the business side of healthcare which are in the same entry (we have different problems here in the UK and I think they are less but they are still there and still frustrating). And in this post she shares how she enjoyed an unusual first a few days ago and the opportunity to be a parent for once.
Finally, I personally am always very happy when I hear about stories like this one posted on Nicole’s blog about her girls.
Well actually, that wasn’t the final link I have to share here but it is the final on topic one.
The next Carnival will be hosted by Shiloh over at Sunny Dreamer. It’s topic is favourite quotes, songs, writings, scriptures etc – specifically the ones that you turn to during the bad times and how they help. Submissions can be via the blogcarnival submission form (inaccessible captcha in use there) or via e-mail to Shiloh – email@example.com
I don’t know about Shiloh but personally always find it useful if people mark submissions with carnival or something similar in the subject as it helps avoid mistaking them for spam.
Thank you for submitting to the carnival and for taking the time to read it. I hope you will meet some new bloggers and maybe leave them some comments as you read.
EDIT: I am annoyed and ashamed that I missed out a couple of links. Especially as they are ones I read originally and really liked.
>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.
I get to meet Margo
I think this is a really interesting topic
There is a very slim possibility that there will be shopping opportunities.
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
All content copyright Emma Crees, 2006 – 2012 unless otherwise stated
>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.
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.
“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!
All content copyright Emma Crees, 2006 – 2012 unless otherwise stated