>In The Deep…


In the Deep

Thought you had
all the answers
to rest your heart upon.
But something happens,
don’t see it coming, now
you can’t stop yourself.
Now you’re out there swimming…
In the deep.
In the deep. Life keeps tumbling your heart in circles
till you… Let go.
Till you shed your pride, and you climb to heaven,
and you throw yourself off.
Now you’re out there spinning…
In the deep.
In the deep.
In the deep.
In the deep. And now you’re out there spinning…
And now you’re out there spinning…
In the deep.
In the deep.
In the deep.

And the silence,
or your secrets, well
raise a worry hand.
Well, you can pin yourself back together,
to who you thought you were.
Now you’re out there livin’…
In the deep.
In the deep.
In the deep.

In the deep…

Now you’re out there spinning…
Now you’re out there swimming…
Now you’re out there spinning…
In the deep.
In the deep.
In the deep.
In the deep…

In The Deep – Bird York

I always thought I had all the answers. That I was the strong one, the one who everyone looked at and thought “that’s Emma, she fights past her CP and doesn’t have a problem with it.” I have CP, it doesn’t have me and all that jazz.

And to a certain extent both of those statements are true. It has always been very very hard for me to admit to others completely that a part of my attitude is at times nothing but a big phony act. But then again doesn’t everyone put on an act for the world?

I didn’t see this, “crash” if you will, coming but came it did, and send me in a spin it did. And a big part of it is related to having found some disability related stuff pretty hard lately. I did write about most of it here but I don’t think I made it clear just how much it affected me. So many people told me I was an inspiration to them that it was hard for me to say hey, you know what, I fucking hate this CP lark at the moment.

I’ve been realising something lately – until I admit that, until I throw off my strong girl act – I’m not going to get better. So it’s time I did as the song said and let go, shed my pride.

Sometimes having to live with CP is the hardest thing I’ve ever done. And maybe it’s the hardest thing I will ever do. Sometimes it really, really, really sucks and I want to scream at the injustice of the fact that this is my life – all i’ve ever had and all i ever will have.

But as long as there are times where I can sit there and say having CP is ok… as long as I recognise that sometmes I get opportunities because of CP and it’s not all bad… I’ll be OK.

I read something yesterday – 1 in 7 people in the UK have a disability, a total of 9.8 million people. The last data on this was complied in 1996 when there were an estimated 750,000 wheelchair users.  28% of wheelchair users are younger then 60. Lady Bracknell explained the importance of this better than I ever could. But you know what it made me realise?

I may truly believe (and I do) that my destiny/calling in life is to raise disability awareness and show that disability is not the end of the world… but it;s not just my responsibility. There are a hell of a lot more people like me out there then you would first think… and not all of them are in wheelchairs, not all of them have physical issues but we all have something in common – we live a different life through necessity not by choice.

Thinking about CAB… I can think of three others who volunteer there now who fall under the definition of “disabled” and three others who recently stopped working there who do as well. Plus there is at least one person I know of there (hmmm maybe two) whose life is affected by disability even though they are not disabled. And that’s just out of the people I know well.

It doesn’t matter if at times I find CP hard… what matters is awareness of the fact that disability exists and more importantly of the sheer scope of disability. As a disabled person I’m more aware of it than your average Joe. But even I didn’t realise we were talking one in seven people. And maybe admitting that it’s hard isn’t going to help just me… maybe being more open when I’m hurting and when I’m struggling can raise just as much awareness and give hope to people just as my strong girl act can.

The hardest part of disability awareness, and probably the biggest reason why I have struggled so much with my need to be strong is the fact that people believe disability doesn’t affect them, they aren’t disabled, they don’t know anyone who is disabled so what does it matter if they participate in acts of disablism?

Anybody in any place can be disabled, anybody in any place can become disabled just like that… I was the premature baby who fought for her life and won that battle but gained a disability in the process. Tomorrow you might wake up and find you’ve had a stroke or you might take your eyes from the road for a second to quiet a screaming child and there you have it, the moment your life changes forever and you get your lifetime membership to “the one in seven club” – congratulations you too are now disabled.

And as for not knowing anyone with a disability?

One in Seven people.

Do you know seven people? Because then chances are you know someone with a disability. Sure they may not be in a wheelchair and it may not be obvious that they are disabled. But we’re there, we’re everywhere. And tomorrow, next week, next year… you might be joining us in our elite club. You might be out here with me trying to keep on swimming, to keep on spinning.

In The Deep.

>CP History Radio Show

>I’m listening to a radio show that was broadcast on Radio 4 (part of BBC Radio) last night.

This is what the website has to say about it:

Speaking for Ourselves: Geoff Adams-Spink explores a remarkable oral history project about disability, run by the charity Scope. A heart breaking and inspirational history of the unheard.

Parts of it are very interesting and I think it’s worth listening too… but there are parts which I personally have found irritating and/or annoying and that possibly some might find upsetting.  History is something that really interests me and disability history which this is interests me more…
I think the first woman who speaks (the first woman w/ CP i mean) is amazing, her comments just seriously made me think “you rock lady” And obviously i don’t like the use of the term “heart breaking” in the blurb on the website ;o)

Click here if you want to listen to it, it’s about an hour long

>Respect for all

>I believe that disability awareness is a very good thing, as is acceptance. I also believe that some people who harp on about how people need to be more aware and/or accepting are hypocritical.

Someone I know (but don’t know that well) and his partner have recently spent a considerable amount of time talking to me about how it isn’t fair the way disabled people get treated and everything we have to go thru. He had a stroke a few years ago.

Yes, disabled people deserve respect. I agree with that. Yes, we should be treated the same as normal people. I agree with that, although I don’t agree with the term “normal” in this context. I wouldn’t say that everything I go thru isn’t fair. But then this is where my perspective differs as I’ve been disabled from birth and disability is all I’ve ever known as a lifestyle.

Unfortunately it’s not the only point on which our opinions differ on this issue. Because then we come to Lucille.

When I was 16 I met Lucille, and we became great friends. We shared a taxi to college and even though we weren’t on the same course we often saw each other during breaks and got on fabulously. Lucille is also disabled, because she had meningitis when she was 4. She has some physical difficulties and uses a walker. She also has learning difficulties and although she is 24 like me she has a mental age of 8 or 9. Neither of us are at college any more and we didn’t see each other for a long time. I cried my eyes out that last day at college because I thought I wouldn’t see her again.

But then I started going to a disabled swimming group with Ryder Cheshire Volunteers. And then a few weeks later Lucille started going to the same session with a group she belongs to. Our friendship continued as though the four years that had past were four days.

I go every week, she goes alternate weeks. So one week I swim seriously and the second I swim a little, I chat, I tease, I joke, I giggle and I hang out with my friend. I have a great time. I look forward to those Friday’s because I love Lucille to bits and spending time with her always makes me feel better about myself. We usually get together in the coffee shop for a coke and some chocolate and chatting after swimming.

And we were sat there the other day we were sat with the people who I’d talked about awareness with. When Lucille went to the vending machine just after I got to the table they were saying to me “she just said… is that right?”. If she told you it, it’s right. I don’t know her entire life story.

Then they laughed at her when I asked her a question when she was eating and when she had finished she told me “it’s rude to talk with your mouth full.” It is rude, but it’s ruder still to laugh at someone and go “she knows, see” like your surprised that she has basic manners. In fact, that appears to show that she has more manners than they do.

After a while we got onto disabilities and she explained about her disability, they commented that “she just wants to be normal poor little girl.” Now, I’ll forgive their calling her a little girl for she is very short but she is not a poor little girl. As a matter of fact I was so proud of her. For she sat there and said “I’m only disabled because I had meningitis, if I hadn’t had it I wouldn’t be disabled. But it’s OK, I’m here.”

I don’t know many people who could sit there and say that. And how they got “she just wants to be normal” from that I don’t know.

Lucille might have learning difficulties but she is intelligent. She can deal with the money in her purse and read what number it is to get her chocolate from the vending machine just as well as I can. Hell, she often ends up helping me as I can’t always reach it to get it out of the tray. She can write, read a little, swim, use a computer, goes to the gym, helps to look after her nieces and nephews and plays bowling along with loads of other stuff. I love Lucille to bits and I wish more people were like her. At times she may be a little naive but it’s part of what makes her who she is, and when it comes down to it she knows what matters and what counts.

My friends with the problems about people treating them with respect… they don’t know what matters. Respect is earned, not given and if they can sit there and be blatantly disrespectful to someone they know is one of my best friends because her disability is greatly different to theirs then I’m not going to respectful to them.

And if they want respect because of the disability of one of them/the status of the other as a carer they have to respect others with a disability. Because if they respect those with a physical condition but not those with learning issues, they are just as bad as those able bodied people they were complaining about.

My acquaintance deserves respect, I deserve respect and every Tom, Dick or Harry deserves respect regardless of disability or not. But, Lucille deserves respect too.

Respect, acceptance and access are things all people deserve. But I want it for everyone, not just those who have a type of disability similar to mine. And until people (including those with long term illness and physical disabilities) realise that that people with learning disabilities are just as deserving if not more so of respect and acceptance the fight for it isn’t going to be over. It seems to me that we’ve only just begun.

If we respect those with a physical condition but not those with learning issues, we are just as bad as those able bodied people we were complaining about. Something which is nothing if not hypocritical.

Lucille, I know chances are you will never read this but I just wanted to let you know how glad I am that you are in my life. You are one of the strongest people I know and you have a talent for helping me without realising it. Love you honey xxx

>”I don’t need no good advice, no well intentioned sacrifice”

>It’s been a lazy, lazy day today… it’s been nice. Gave me a chance to recharge my batteries and also to think somethings over and get them sorted out in my head. And my lovely friend Ted who is one of my swimming volunteers and also treasurer for the access group came round and adjusted my brakes for me so they actually work now. He really is a lovely man and I am grateful to have such a caring and helpful person in my life.
It’s bitterly cold but dry out and so I took the chance to get outside and get some fresh air – I took my manual chair and so I got some exercise too. I think it helped my thinking a lot to get out of the house and away from the situation if you know what I mean.
I got a lot of conflicting advice from different people about my meeting with my social worker and how it made me feel – I think I’ve now figured out which path is the right one to take on this matter but the chances are I’ll change my mind again between now and when I get the chance to actually act on it.

It’s almost reached the point with my “key advisers” where I know pretty much what their take on each matter will be. Which is good. It does save me some time!

But it’s also bad when one of them always takes the path of least resistance, least effort and in the process usually manages to give the impression that she has heard what I’ve said but not listened to it. Thinking it over today however I’ve come to realise that it’s not so much that she doesn’t listen to what I say but that she lacks the experiences I’ve had and the perspective which would allow her to see things the way I do. She sees doing something about this as making a big deal of it perhaps “rocking the boat” whereas I see doing something about it as a positive thing – preventative action which should stop myself (and potentially others) from ending up in the same situation in the future.

One of the most important lessons I learned during my training for CAB is that it doesn’t matter whether you agree with what your client feels. It’s what they feel and so it’s valid and you have to accept that. Agreement doesn’t matter, acceptance does.

I’ve been dealing with quite a few people in my life outside of CAB lately who need to learn that lesson – the world would be a better place if we worried less about agreeing with people and starting accepting our differences and being proud of them instead.

But then I guess that’s just wishful thinking and a dream that is highly unlikely to ever come true.

>One Voice

>“One voice can be stronger than a thousand voices.”Captain Kathryn Janeway to Seven of Nine. (from the Star Trek: Voyager episode The Gift)

One voice can be stronger than a thousand voices and that can be a very wonderful thing. People with strong voices have changed the world and shaped our history. And others with voices equally as strong have changed it in small ways too, influenced one person in a small way and shaped their life, made a difference to them.

One voice can also be damaging. It’s something I’ve come to learn through my time as a CAB adviser. People, all people not just people in the public eye, need to be aware of what they are saying. More than that however, they need to be aware of how they are saying it. That’s something which has been brought to my attention time and again over the last week or so.

People have made comments to me or asked questions which could be interpreted as hurtful or in some cases were not deliberately meant to be hurtful but have the potential to cause harm. I am able to realise the truth and the real situation in most of these cases and so I am not affected. But then I am because I know of many people through my various different achievements and experiences who wouldn’t see those words for what they were and would be harmed by it.

This happened on Friday, twice on Saturday and also yesterday. Perhaps I am reading too much into some of these situations, I don’t have the distance from them to be able to judge.

I’ll leave what happened on Friday because it’s not really relevant to this entry. On Saturday I went to the hygenist. [background: I am seen by the hygenist in a different consulting room to her usual one due to access issues, the receptionist vaguely knows my parents] The receptionist was getting the room sorted out and moving my wheelchair away from the dentists chair after I transferred. She was chattering to me when all of a sudden she comes out with

“So will you ever get better Emma?”

I explained what CP is and that it’s a from birth to death type thing.***

She went “Awwwww”

I said it’s fine and how can I miss something I’ve never had? Which for the most part is true.

I have no problem with discussing my disability, I believe it’s a really positive thing to do. And as my Dad commented it’s a fair thing to wonder. But it would have been a nicer question if it had been phrased as “so what’s your disability?” or if she knew I had CP “What does CP mean for you?”

Being asked if I would get better annoyed me because I found it rude… but I know people who it would have really upset or devastated – to her it was an innoculous question but to others it could have been a real issue.

My social worker yesterday made a few “suggestions” as to my care and the way I use my direct payment to organise it. One of which was that I should stop using my agency as it’s almost a waste of money. I can (she says) get my sister to do my care (or at least the part that is about to be set up as new). I explained that my 17 year old sister who is in sixth form, learning to drive, working part time and going to university in September doesn’t have time to do it. She then asked whether Sophie ever comes to see me and said “well when she comes she can do your care rather than whatever it is you usually do.” and also made the comment that if I am worried about the tax/employers responsibilities that come with using DP to fund a private carer I can just not pay my sister.

Yes once again she proved that she doesn’t live in the real world. So I just got really annoyed but kept it to myself, thought she was a silly woman and then vented in this journal when she left .

It’s like Soph said when she heard that though – to some people what a social worker says is gospel and there is no way that idea would work in practice. Again, I know people who don’t know their rights like I do and would just go along with the suggestion regardless of it’s practicality. So she should listen to what is said because it could end up with this huge situation which blows up in her face.

The power of one voice alone is a wonderful thing… but it’s a power we need to be careful with. One voice can do great stuff, but it can also do terrible stuff. No matter who we are.

***Bonus points go to my carer who when I told her about that conversation went “Well, I’m just waiting for my leg transplant… i’ve been waiting for quite a while so it should happen soon and then I’ll be _all_ better” in the most wonderfully sarcastic way and made me laugh so hard