>Family Relationships

>Kathryn is hosting the next Disability Blog Carnival and has suggested the topic of “Family”. These are my thoughts on family and disability.

I’ve always been disabled and so I can’t comment on that aspect of the interaction between the two (acquiring a disability, I mean).

What I can tell you is that my sister is seven years younger than me and we have a brother who is slap bang in the middle of us. Which meant there were times when I was in my chair and she was in the buggy. Explaining to a four year old why he is the only one who has to walk is not easy. So I can remember a time when we were in a DIY store. I was being pushed in my chair (I didn’t get an actual chair I could self-propel until I was 9 or so) and Sophie was being pushed in the buggy. And Ben was screaming and throwing a tantrum because he had to walk and it wasn’t fair.

I can tell you that I used to wear night splints and that I have many memories of one going on me and one onto Ben because he wanted the attention too. When he’d fall asleep my parents would gently take his off and put it onto me. Heaven help them if they woke him up – because after all I got to wear mine all night.

And then there were the times when I would throw a fit because I wouldn’t be allowed to do something Ben or Sophie were and I was the oldest and it just wasn’t fair!! I think the worst was when I was 13 and had to have it explained to me that CP was forever.

Occasionally still I feel a little pang when they do things like I cannot. Like today sat in my sister’s car listening to loud music as she drove I thought how much I would love to drive. But that’s just one of those things were we always want what others have. I remember when I first got my previous powerchair. It was the first time I had one and I showed Soph how to drive it and then we went down the quiet little cul de sac I lived on at that time – me in my manual and her in the powerchair. She loved it and was laughing and asking if they sold those things to able-bodied people because she’d really quite like one. She did also try to take it up a huge curb and got it stuck but thats another story…

I get on well with my parents too. I would say that my CP does make things a little tense between me, them and my brother and sister too at times. But equally I know that everyone has reasons why they don’t always get on great with their family and if it wasn’t my CP and my care needs making us all frustrated and snapish it would be something else – and often it is something else. This just comes back to my tendency to blame everything bad on my disability, as I’ve discussed before.

I could write a lot more about my relationship with my family – particularly with my parents but there is a lot of background to it which would take more time than I have to explain. I have a show to watch in fifteen minutes and somethings are more important that blogging no matter how much I love it!

And with the things I am thinking of in particular I have found many people have misunderstood without knowing that background. Because those things are so opposite to the normal perception of the little crippled girl who lives with her parents and relies on them etc etc people assume that my parents are uncaring and we don’t get on. Nothing could be farther from the truth. We love each other and we get on well but they broke the stereotypes because they wanted what was best for all of us – and it was that.

>Disability Blog Carnival

>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.

>A note and a reminder


For posterity:

My weight today is 14st 7lb so that is the official starting weight of 2007. I hope to lose 6lb this month.

And a reminder:

The Sixth Disability Blog Carnival will be on 11th Jan 2007. And I will be hosting it here. The theme: disability and how it can affect friendships/relationships (with friends, family, loved ones, colleagues, romantic/sexual – basically any sort of relationship).

Submissions can be sent to me via e-mail (Emma@WheelchairPrincess.com) or the Disability Blog Carnival submission form. The deadline for submissions is next Monday (if sent through the site, if I receive e-mails up to the Weds for the carnival I may include them) and the carnival will appear the next Thursday (11/01/07)
If you e-mail please put carnival or some similar in the subject line – the permalink of the article is all you need to send but you may, of course, send more than that. And equally you may also send more than one article/entry.

I’ve had some very interesting entries sent to me but am hoping to get a few more. I’d especially like to get some new participants if possible. I was also wondering about getting some articles from other perspectives (e.g AB relatives or friends writing about their disabled relatives or friends) we have one or two and they are good.
Something I’m finding so far is how many people have very similar experiences and it’s helped me to feel a little less alone at a time when I am feeling a little overwhelmed by my disability. Wouldn’t you like to do that for someone you know? Share your experiences in the carnival and you could do that!

>Disability Blog Carnival

>This was a post that I had intended to do yesterday but got sidetracked and never managed.

The Fifth Disability Blog Carnival is now up over at Planet of the Blind. It’s topic: Travel and disability. Well, they put it much better than that but I am tired and cold (because I am an idiot and went into the garden briefly without a fleece or shoes) so that will have to do. As always it makes for very interesting reading.

The Sixth Disability Blog Carnival will be on 11th Jan 2007. And I will be hosting it here. The theme: disability and how it can affect friendships/relationships (with friends, family, loved ones, colleagues, romantic/sexual – basically any sort of relationship).

Submissions can be sent to me via e-mail (Emma@WheelchairPrincess.com) or the Disability Blog Carnival submission form

If you e-mail please put carnival or some similar in the subject line – the permalink of the article is all you need to send but you may, of course, send more than that. And equally you may also send more than one article/entry.

>Reflecting on Spirituality and What I Believe In

>The next Disability Blog Carnival is being hosted on the 9th of November over at Growing Up With a Disability. David suggested that whilst all stories/entries on disability are welcome the topic of spirituality would be an interesting one to discuss.

I know several bloggers who have a disability and how are a lot more religious than I am. Notably, Shi and Christamae. Unfortunately one of the downsides of the caringbridge system which Christamae uses is that you can’t link to individual entries but her entries are well worth a read. I will point you to one specific entry of Shiloh’s though – this one. But to me the topic of spirituality isn’t just about religion be it organised or otherwise.

I have issues with organised religion as such – churches that aren’t accessible and people who persist in telling me my disability is wrong. I have been told that I am in a chair because I sinned in a previous existance/life. And I’ve been stopped in the street by those irritating people who like to preach there. They asked if I believed in God and when I said Yes they told me that if I truly believed I wouldn’t be like this. Another friend with CP was with me then and she was very upset by the comments they made. I was not. I have the strength to view that as it is – fear of the unknown.

Fear simply is False Evidence Appearing Real – in this case the idea that to be a true person, a whole person, a functioning member of society one cannot be disabled. I told them to F&*^ Off and left… my friend… she cried. Their spiritual beliefs led them to the understanding that to be anything but an able-bodied person was to be less valid as a person and was also a sign of a lack of religious belief.

My beliefs… My beliefs are different.

I believe that there is a higher power and that Prayer works. I believe in Karma (what you give is what you get returned) and that death is not the end. Most importantly I believe that everything happens for a reason but that sometimes we can’t see that reason – the phrase can’t see the wood for the trees springs to mind here.

My CP was caused by the fact that I was born prematurely and as my lungs were not fully developed I suffered brain damage due to a lack of oxygen. The bottom line is this: there was no way I would have ever made it through that unscathed. Either I would have died or as happened, I lived with brain damage which for me equaled CP.

I love my life and I am thankful for it. So I guess you could say I am grateful that I have CP. I’ve never thought about it that way… I wouldn’t want to be without it, I’ve always said that. And truly because all I’ve ever known is being disabled I don’t think I would know what to do with myself or possibly even how to cope. I am Emma and Emma has CP. I am not my CP but it is completely and utterly intertwined with me and couldn’t be seperated.

I have had many many experiences that are unlikely to have happened if I wasn’t disabled… some down right shitty but some absolutely amazing and ones I wouldn’t wish away for anything.

I’ve had two very spiritual beliefs related to my CP for a long time and recently I’ve come to hold a third although I would say that relates more to the fact that I have battled severe depression.

I believe that the Higher Power chose me to have CP because I have a soul strong enough to cope with it and my parents and family have the fight in them to pick me up when things get tough and push me to keep going. Scream at me and refuse to let me stop even when it hurts them badly to do that.

When I was a child I used to walk substantially more than I do now. One day I was walking around Tesco (Supermarket) with mum and I fell over. I had just learnt how to pick myself up from the floor and I was soooo proud of that skill. It still needed work though and also when you can’t do things for yourself doing the things you can matters so much more and means more than you can imagine if you’ve not been in that position yourself. I don’t remember this incident but it is a story I have heard so many times that the pain it caused is now obvious to me because otherwise why would it have stuck in Mum’s memory like that?
So, as I said, I fell over. Mum looked at me and went “pick yourself up then” and after a struggle I did. There was a lady from the Salvation Army nearby and she immediately began to pray Out Loud for the “poor disabled girl.” By doing what she did she was doing what was best for me and it truly is things like that which I know had to have hurt my parents but which made me who I am today.

I also believe that it is my calling in life to work for disability awareness and disability rights and to make things better for people such as myself. That’s something that caused me a lot of problems but after a lot of work with a wonderful counsellor I am now able to recognise and accept that this doesn’t mean that I can’t find the fight hard and that I have to worry about doing stuff to better others all the time. It is partially why I blog.

My third belief is one I have come to recently as I have begun to recover from and come out of my depression – I know that whatever happens will be for the best and I believe that I will OK even if at times it doesn’t seem like it.

Oh and finally… I believe that if life gives you lemons you should make lemonade. then you should find someone whose life has given them Vodka and have a party! And if you should then find a third person whose life has given them Archers… well thats a damn fine party your gonna have and as they say good times were had by all!