So I, um, somehow managed to gash my toe open this morning. No idea how I did it other than I did it in the shower (shades of Psycho there). Blood was (and actually still is) everywhere. Literally. In the bathroom, trailed all through the hall and by my bed.
Wonderful, just wonder-fucking-ful. And of course, CP just can’t be left out of anything even mildly bodily function related and has to complicate matters.
I really hate this time of year.
I went to the nurse this morning to have my blood pressure checked again. 120/84 which is fine but they will check it again in a month and then if it’s still good just do it every six months to be sure.
She asked if I’d had a letter from them inviting me to go for a smear test now I’m 25 (Happy Birthday. Have a smear to celebrate). I said yes but that I had understood from the leaflet they sent that as I’ve never had sex it wasn’t necessary.
Basically that’s right but I asked her if it was something I should have anyway if, say, I got much older and was still a virgin. She said not and floundered a lot trying to explain why they do it if you are sexually active. I knew why already but it was amusing.
She wound up by talking about how my CP didn’t mean they wouldn’t be able to do a smear (I had said in passing that due to spasticity etc I thought it would be difficult) and asked how I transfer? I stand, says I. “do you have any use of your legs?” she asks. I was hugely tempted to go “I just told you I can stand, what do you think?!” but I just said I could walk a few steps with help.
Then we went for the big finish in which she told me, that as long as it’s just me it’s fine “but if you get any willies near there you’ll need to come in for a smear.”
Well I guess that’s one way of phrasing it…
I’m probably going to be getting a new carer soon. And I’m thinking that it would be well worth my while to train them to be “seen and not heard”. Yes, indeed.
I gave yesterdays carer something of a piece of my mind over the fact I said I didn’t feel well when she asked how I was, and then she kept going on what was wrong, was I ok, did I want to talk about it, I was very quiet etc. Having carers can be hard because you have someone in your personal private space. When they are very in your face questioning you and getting at you about not being talkative it’s even harder. So the new one if it comes to that - seen and not heard.
Saw the disability employment adviser from Shaw Trust earlier. It was OK. I haven’t heard about the job I interviewed for and she called them at the beginning of the week and they didn’t return her call so I guess that’s that, no job there. No loss really.
When I went to counselling on Wednesday I said somehting and she told me all about how I was making huge progress with that. And it happened for about three different things so that is nice.
Welcome to the sixth edition of the Disability Blog Carnival. The theme: The theme: disability and how it can affect friendships/relationships (with friends, family, loved ones, colleagues, romantic/sexual - basically any sort of relationship).
Please take the time to read some of the following and leave comments, it’s the only payment most of us get! Also I’d like to welcome several new bloggers to the disability blog carnival.
Able bodied people writing about their relationships with disabled people
Connie Kuusisto presents He’s Blind. I Married Him Anyway. posted at Planet of the Blind, Connie can see. Her husband, Stephen, can’t. This is the story of their relationship.
Faith presents My Aunt has fast wheels! posted at Diary of Roses. Faith’s sister uses a wheelchair and I could relate to a lot of what she said about people’s reactions to her and her sister.
Laura Young wrote Amazing Grace: Couldn’t You Just Run Over My Toe over on her blog The Dragon Slayer’s Guide to Life. She introduced a friend with a disability to her Mom. The results opened her eyes.
Parents of Kids with Disabilities Sharing Their Experiences
Ellie presents Choices posted at Chocolachillie. She writes about the relationships she has with various members of her family since her son who is disabled was born.
Moreena is Mom to two of the cutest! children! ever!. In her blog The Wait and The Wonder she shares the experience of people rejecting her daughters friendship in the post Gratitude, part 1
In Positives not Negatives, Jacqui from Terrible Palsy shares her frustrations at the point scoring people with disabilities sometimes indulge in. And in her most recent post, Keeping it Real she discusses the Ashley Treatment and the relationship between the media and the disability world.
Kathryn from Ryn Tales gives us End. Radio. Silence. in which she talks about her daughter Ellie and their relationship.
Emily Elizabeth presents Loving Emma Jayne posted at Lovely and Amazing. Emily is mom to a beautiful little girl and this post shares the journey she went on when her perfect plans disintegrated. A truly from the heart post. I felt something of a link with this post, probably because I am an Emma Jane as well (without the y in my case however).
People with Disabilities
Lisa presents Well I feel I need a little sympathy - Stevie Nicks over at A Letter to My Children
Tokahfang from From Where I’m Sitting presents Friends in Fair Weather. I was reading this post going “been there, done that”
Disgruntled Ladye shares Chronic Illness and Relationships in her blog Everything and Nothing At All
Teresa from Making Light shares insights in Deaf Video: The Street Finds Its Own Uses (Again)
Wheelchair Diffusion blogger Ziggi’s been dealing with those annoying TAB people who park in disabled spaces. Read the story in Above the Law. Big respect for this guy. I wouldn’t have had the nerve.
ABFH’s blog is called Whose Planet Is It Anyway. In her post Everyday People she talks about having autism and relationships.
Wheelchair Dancer presents What Happened to You and In Your Face: Answering Questions posted at Wheelchair Dancer. The first of these posts covers that age old question people love to ask and the second what it’s like to be in a relationship where one of you is disabled.
Ballastexistenz from Ballastexistenz has an interesting discussion on Pseudo-Allies and One Reason Many Auties have Trouble Spotting on them
Lorraine Hershon from Keep Buggering On!! (which seriously is the best blog name I’ve seen in a long time) wrote Watch Out!!! which reminds me of why I hate walking across busy carparks when I’m alone in my chair. I’d like to be able to say her entry shows human life at it’s best but well, I can’t. In fact it makes me want to hit the people involved.
Dave Hingsburger from Chewing The Fat offers up JOY. If only the people involved had offered some JOY to him instead of bad feelings…
Dave also has a job that let him have lots of fun in And a Partridge in a Pear Tree (as a side note here: I’m seeing the disability employment adviser again tomorrow, what do you reckon would happen if I told her I wanted a job like that?! LOL). And in his job Dave has dealings with Kyle, My Way shares a lesson learnt.
Shiloh from Sunny Dreamer shares her experiences both good and bad in Disability Effects on Relationships. And in Why Won’t People Listen - They Don’t Understand she shares her frustrations when people won’t accommodate her despite her asking.
Joel from NTs Are Weird has written about how The Real Problem is low level prejudice within society and has also written a post about Autism and Loneliness
Autism Diva has written About lovable autistics over on her blog, Autism Diva
Thirza Cuthand presents Growing Up with Sky posted at Fit of Pique. Thirza has a sister, Sky, who has learning disabilities. Here she talks about what it was like to grow up together and also shares her opinion of the Ashley Treatment.
That concludes this edition of the Disability Blog Carnival. Thank you to all who contributed. The next issue with be Thurs 25th January over at Disability Studies. I believe that the topic is disability history and disability in the arts but don’t quote me on that! You can contribute via the submission form.
Here looking for the carnival? It’s coming but it probably won’t be up until early this evening my time (GMT). I feel lousy and am headed to the docs in a minute for meds - ear infection I think. I don’t have time to finish it before I go and I want sleep when I get home.
In a completely unrelated aside comment I got some lovely compliments last night 
hopefully I will remember to share them at some point.
In case you haven’t heard about it this is a link to Ashley’s parents website which explains what they had done to her and their reasoning behind it. It makes some very interesting reading.
The short version is that Ashley X is 9 years old and has profound physical and learning disabilities. Her parents love her dearly (that much is clear from their writing) and call her their “Pillow Angel”. They have taken steps medically to ensure that she remains in a prepubescent state forever.
It’s not something I agree with and it is something I am glad wasn’t done to me. However they did do what they think is best for their child and really that isn’t something we can condemn. Realistically I think this probably wasn’t the best choice for Ashley and that they haven’t considered several issues. It really is, as Jacqui said, a case of damned if you do and damned if you don’t.
I do worry about the fact that it was passed as a suitable treatment by an ethics board and also by reports that Ashley’s doctors have had requests from other parents for their children because at the end of the day this is not something that should be being done to children. Especially as doctors frequently give incorrect prognosis. What would happen if that was done to say, a two year old and then it turned out the situation wasn’t as bad as anticipated. It’s a bit of a slippery slope.
I am physically disabled and I know a lot of other people with physical disabilities. Once or twice I have been faced with people who assumed I also have cognitive difficulties but I also know a few people who have CP (and other disabilities) to such an extent that this is a regular occurance for them. I also know several people with learning disabilities (less severe than Ashley’s appear to be) and I would hate to think that they would be subjected to part of the Ashley Treatment. They are all valid members of society and so is Ashley. They and Ashley deserve to be treated as such and not reduced to permanent childhood.
Also, Pillow Angel is a horrible term but as Jacqui said in her reply to my comment on her blog (talk about a run on sentence!) some people think the fact that she calls her blog Terrible Palsy is out of line but she finds it funny and so do I and may that is the case here. It (pillow angel) works for them and whilst we may not like it not all of us can be as militant about people first language etc as I and others are. A lot of the language is offensive if you believe in people first language and some of the sentiments or facts presented are confusing or incorrect. But, you know what? Live and let live. Sometimes it’s all people can do to survive and I wonder if that is the case here.
Ashley was treated as she was treated, that cannot be undone. And whilst I do have many many issues with this I think we cannot truly condone the parents. I blame the doctors and other support agencies who allowed it to get to a stage where her parents felt they had to do this and then carried it off.
Don’t blame the parents. Yes, a lot of parents would not do what Ashley’s have done but at the end of the day sending them hate e-mail or whatever isn’t going to change anything. What we need to do is make sure this never happens to any other child.
I finally did something I’ve been talking about doing for ages. I’ve listed some of the bracelets I’ve been making on eBay.
I don’t expect anyone who reads this to bid but thought you might like to see them:
My carer said I should set up an eBay shop and call it Em’s Gems but I figured I wouldn’t go that far…. And I actually have loads more than the ones I listed but I figured I wouldn’t list them all this time.
Swimming today was brilliant! I swam 16 lengths (400 metres) and I walked 10 lengths (250 metres). There was clonus and sore legs after that but it was worth it. There was also an inability to put my knickers on when changing afterwards too and I ended up having to just put my jeans on and go commando. Which I think is probably the first time I’ve ever done that, lol and is weird. I was sitting there having hot chocolate afterwards and chatting thinking “I’m sat here with no underwear on and no one knows!” Only, now loads of people know because I wrote it here.
I am tired now and my tummy hurts a little bit. I actually feel very out of it and trashy but I’m grateful that I didn’t need codeine because they would have made me feel much worse.
I am hopeful that I will find I’ve lost a little bit of weight when Monday comes.
Tomorrow I have to go food shopping and I might pop into new look and next quickly to see if i can get a cheap ish now top for a night out on Wednesday.
I am hopeful that the Quest for Health in 2007 is going to achieve some short term results. It’s at least gotten off to a very good start. I am lethargic today and haven’t had the best of days today for various reasons but in terms of health it’s been “all there” and it hasn’t been too hard.
I’ll hold my tongue about long term results for a while seeing as how I managed to lose 20lb in four months last year and then regain it in the following three months. Also, I had the tape measure out earlier and my waist measures as much now as it did when I first started tracking the measurement in June last year (at one point it was five inches less).
Yeah, thats horrible, a total wake up call.
“Take Care of your body, it’s the only place you have to live”