Life is good

I seem to be going through a bit of a not blogging season. My boundaries for what I do and don’t share have changed a lot over he last year and I’m thinking first typing second more than I used to. The last few weeks thats been not typing at all.

Life is good. I’ve been having some down time. Lots of knitting, enjoying the sunshine. Relaxing a lot and reading entirely too much NCIS fanfiction. Blaring loud music and singing along. Falling in love with a new to me musical (Legally Blonde). Plus I’ve been able to reconnect with a few people I’ve not seen recently. I went for a drink with one last night and we laughed a lot. About dippy wedges and farm assured chicken and so many other things that fall under the “you had to be there” category.

Actually, life isn’t good.

It’s very good.

♥ Emma

Tools, Tenants and Tang, TPAS 2012

The general opinion yesterday was that I “look really tired”. First I met up with a friend and they said it, then the other person we were with came along and said it a couple of times yesterday. And someone at the event we were at asked me if I’d enjoyed it saying I looked tired. I was chatting to one of the journey care staff at Oxford who knows me and she went “oh Emma you look really tired.” Finally when I spoke to mum when I got home she asked if I was tired.

I’m still pretty tired today but less so. Yesterday everyone got simply told “yeah I am.” Today I am thinking of jokey responses.

I spent the last three days (Monday to Wednesday) in Birmingham for the TPAS Conference 2012. TPAS for those not in the know (which included me until recently) works with social housing providers to involve tenants in the running and decision making of their housing provider.

It’s not something I would have thought to go to but I was asked to go. When I was told all my expenses would be covered, two nights in a hotel, workshops, disco both nights and a swanky awards do one night I was like let me think… Yes!

There were I think between 400 and 500 people there, a mixture of involved tenants and staff. I went with another tenant and a member of staff. I knew them before but enjoyed getting to know them better. We laughed a lot the whole time including about some really silly things. It was good fun and non stop!

The hotel was very nice… Pretty swish with thick carpets and some very blingy lights. If you think Pat Butcher’s earrings you get the idea of the sort of thing I mean. They gave me a 12 page accessibility document when I checked in but I feel relatively sure that no OT was harmed in the making of the accessible room I had. It worked but although everything I needed was there and useable there were errors like if you sat on the shower seat you couldn’t shut the screens and the bathroom flooded. Never mind, I’m sure housekeeping enjoyed cleaning my bathroom for a second time that day after my early evening shower.

I realised how much I don’t know but I also learned a lot including:

* I really hate wheeling on carpet

* The TPAS Angels (help staff) are brilliant at helping me at the breakfast buffet. I would ask for something and they’d stick loads on, usually more than I asked for because “it’s only little…” I missed them this morning!

* More than $1 Million is spent in FarmVille everyday. I went to a writing workshop which showed a video on 24 hours in social media It was really good and I think I can do a lot with what came out of it but that FarmVille stat freaks me out. (the title of this blog comes from this workshop where small groups of us came up with a headline to describe the conference)

* I am very lucky in the help and support I get from my housing provider. I knew that already but hearing storied from tenants from all over the country brought that home. Particularly the stories from other disabled tenants, some of which infuriated me.

* I knew that there are a lot of changes coming in social housing but I hadn’t realised just how big and in some cases scary they are.

* That I would rather do almost anything else than hear a particular speaker again. He was so boring and unable to answer the questions people were actually asking him but instead the one he wanted to answer.

* But that I would really love to hear another of the speakers again because she was brilliant. Plus when she got everyone standing for somethng she had thought about it and was like “if you can’t stand put your hands in the air if you can’t stand.” which is good because so many times can’t stand means not included.

* Just how important resident involvement is. I do it because it gives me opportunities to do things I enjoy or am passionate about but it’s about so much more than that.

* And that I really, really hate wheeling my manual chair on carpet.

Random Bullet Points of Life

I’m either on my second UTI in a few weeks or my second course of antibiotics for the same UTI. Or I had a UTI and i have some lingering yuckiness. Delete as applicable. I’m not sure which it is! I am much better than I was but not right.

I was going to put I am 100% better than I was but then I wondered if that were actually possible given the above mentioned not quite rightness. The joys of the English language.

We finished watching The Bridge on Tuesday. It continued to be really really amazing and they handled the disability of Saga Noren (asperger’s) really well. Of course it would have been better if the actress playing her was disabled but it’s still one of the best shows I’ve seen for a long time. Highly recommended.

Never underestimate the power of a sincere apology. I got one yesterday and hearing them admit it was unacceptable and they were sorry was such a help to me.

I’m having the next week or two off from a lot of my usual activities. There should be some definite fun in there and I feel sure I’ll be revisiting my “you know you’ve got CP when…” blog series, hopefully with positive stuff. Exciting times.

My crip humour keeps falling down when I crack jokes and people react by telling me not to lose hope or trash talk myself or that miracles happen. This is disappointing and is why I haven’t shared the latest joke.

Randomly I haven’t left the house today which is very unusual for me but was what I needed. The wheelchair guy from the NHS was here for a few minutes fixing my footplate which I’d spasmed and broken. And a friend was here for an hour or so. That was the first time she’s been round but hopefully not the last!

I’d like to restart my 100 days of writing project but I keep putting it off.

♥ Emma

Sailing in the Rain

Went sailin’ in the rain
Just sailin’ in the rain
What a glorious feelin’
I’m happy again
I’m laughing at clouds
So dark up above
The sun’s in my heart
I’m ready for love
Just sailin’
And sailin’ in the rain

I really thought based on the weather sailing would be off tonight. But it wasn’t. I had a really great sail despite the fact it was chucking it down.

By the end of the evening I was wet, chilly and tired. But I was a hell of a lot happier than I was before I hit the water.

♥ Emma

Happy Tears

I was asked to speak at an equality event today. About the access group (AFA) I’m chair of and a bit about my own story as a disabled person.

I think it well. I didn’t write a speech, I had a few ideas but wanted to just talk off the cuff. It helped that this is I think the third time I’ve explained to people what and why AFA is (although previously I’ve only done so in informal settings). The very first idea I’d thought of when thinking it over I forgot to use.

I talked about how I don’t suffer from CP because it’s all I’ve ever known. How just because me and another hypothetical person both use chairs doesn’t meant we have the same needs. And I talked about lots of other things. I can’t remember exactly, I wish I could.

One of the things I mentioned is how failing to provide access and inclusion doesn’t just mean I miss out. I shared the story of the Major Access Fail. Through that course I’ve made some new friends. But I’ve spent so much time fighting and arguing and being upset about that I feel like those new friends haven’t met me. They’ve met upset, depressed, fighter Em whose been made to feel worthless. They’ve not had the opportunity to meet happy, having a laugh Em who gets on with things, is confident, opinionated and loves life. Me.

After I finished speaking I went to the back of the room and the organiser leaned down and whispered to me “that was brilliant” so hopefully it worked. Next there were a few more speakers then time to mingle. During the mingling time I spoke to a few people and asked them if they thought it went ok. I was a little unsure I’d hit the brief. A few interesting comments, I think I might have got some people thinking.

Someone I vaguely know came over to chat. I think it was the third or forth time we’ve met. We did the usual “hi how are you?” bit and then telling me she’d liked my speech she burst into tears.

I froze and thought “oh shit”.

What I said was “I didn’t mean to make you cry.” hopefully she missed the panicked note in my voice

Through tears she shared why. She has a young granddaughter who has CP. Ever since the diagnosis she’s been upset about all the things her granddaughter wouldn’t do. Hearing me talk about my life gave her hope that things would be ok.

She told me the tears were happy tears, happy tears.

I gave her a hug and I must admit I had to fight off happy tears of my own.

I’m not sure what I said that helped, I never expected anything like that to happen. I’m not even really sure I did help, sharing struggles like that.

But…

If I can make one person think differently about how they approach disabled people I’ve succeeded in my talk.

Reaching someone else and helping the family of a toddler have hope that a CP diagnosis isn’t the end of the world is huge. I don’t have the words to explain what that means to me.

It doesn’t negate the bad experiences I’ve had. They still hurt, they still shouldn’t have happened but will again. And in the case of major access fail its still outrageous. But being able to use that in a positive way takes away most of the sting of the memory.

It’s not OK.

But it sure as hell helps.

♥ Emma

Quote

Quitting is not giving up, it can be choosing to focus your attention on something more important. Quitting is not losing confidence, it’s realizing that there are more valuable ways you can spend your time. Quitting is not making excuses; it’s learning to be more productive, efficient and effective instead. Quitting is letting go of things (or people) that are sucking the life out of you so you can do more things that will bring you strength.”
~ Osayi Osar-Emokpae.

♥ Emma