Archive for the ‘Rockinpaddy’ Category

This is not a sad song….

November 13, 2016 5 comments

Of course its a bit hard to write this blog but I just need to acknowledge…..This day (13th November)…this time last year, I didn’t know that I’d only have 7 days left with my beautiful, lovely mum. Bare with me…promise it won’t be a sad song…..

Me n Pickles (who just landed today, swapping planes wiv me Banana burro, Dave) were backwards n forwards to mum, still hoping for the day I could get her home from the hospice…Taytos, bounty, crunchie, burgers…all the bad stuff (flowers and scents too,mum loved nice smells), but we all laughed together and didn’t care! 
We didn’t know what was happening next so we lived for each moment and I’m so grateful to everyone who supported/PA’S for me  so I could always be there…when it mattered. Especially after Gerry suddenly passed in the middle of it all bless him. 

I always knew mum was my strength but I’m only just starting to realise how much strength she’s given me to keep going. And I’m so grateful to her for it. 

This has easily been the worst year of my life and yet I’m here (obviously) getting through it, gigging, working, living. I’ve lost mum, Gerry, my pa Vicky and a whole load of other changes (poor Yvonne & Lena no longer able to work with me, no ilf, amongst other changes)…

I’d lost two people who were my compass…my everything…..but…..I smile, laugh, enjoy things/moments, continue to write & sing, perhaps a little weaker for now.. But….  

I’ve obv cried a lot…In life I’ve never been scared to cry but was feeling a bit outa control with it. So I tried to stop hold it in…not cry so much…not show it as it was seen as wallowing…not crying  didn’t help. 

Recently I went back on a gig/end of tour show performing with ExySexy Bodies. Ironically I was in the middle of a UK Tour with them when mum took ill.  Anyway whilst away on this recent gig  G-Bob gave me a few pearls (I’ll put the link up once I chat to him to ok it). As a result I cried again…but the way  I used to do, cry …deal with a sadness….let an emotion out and importantly to feel it was ok to do so (Thanks G-Bob x). 

And yet through this last, worst year of .my life… good things carry on, filling my life. I can still laugh, smile, enjoy. Phew!! See I told you it wasn’t a sad song. 

I’m blessed with a dad as strong as an Ox.  A family, PA’s & friends that have caught me as I have fallen at various times through this year and brought me back to realise I’m lucky and need to get on wiv it.  

Cliché but, You all know who you are and I love you dearly for all you have done and continue to do for me. 

I have brilliant work and colleagues, supportive, always there with understanding n words of wisdom and who really do inspire (in the proper mom patronising sense of the word) me. 

In my life I always try not to spend too much time looking inward…a little is no harm.. But not to the point where it becomes self centred. This last year I’ve had to look inward more than I would like…just to hold on…get through….

I’m not going to say I’m ready to move on…not sure lifes really like that, but I am getting through, getting on, new excitement, challenges, friendships, relationships, opportunities that I know I have to give a go/take..there’s a job to be done. And as mum said in those last week’s.. Keep at em.. Fight on (referring to our fight for the ILF)

I know this next week’s going to be hard leading up to going back home to Ireland, and of course some sadness,….but….I’m looking forward to it. 

I’d love your help next Sunday to mark mums anniversary…in a way…if that’s ok? I’m giving you the heads up now so you can think about it in time. 

I want to find a way to celebrate mums life so when I get to this point each year, over time it becomes more celebration, less sadness. I know my family will pray but not everyone is into that and me mum taught me what inclusion means…whoever you are yer welcome..


As many of you know, mum was a whirlwind of energy & happiness, the fastest at everything and always up for the craic. She loved music (probably why I ended up a musician?). So it’s simple.

Next Sunday I invite you to play a song  that makes you smile (if you want obviously). 

It’ll be a bonus if it makes others smile. Choose a song that means something to you. Simples…maybe share it in Facebook/twitter. Even that’s not important…just play a song that means something and makes you smile..

Hopefully when you do it you’ll remember me mums strength and happiness which in turn will give me strength n happiness…others don’t even have to know why……everyone’s a winner.. 

Ideas for a hashtag (if we want to share the moment, hopefully #not to cheesy) would be making Gerry laugh and confusing mum with my flip top computer and they’d both be asking how many gigabytes…

Course I’m gunna be sad…I’ll prob cry a bit…but I want to smile and learn over time to celebrate the day better & better. 

Thanks in advance sausages xx

Hashtag suggestions so far:

#MarysMusic (my preference at mo?)



Fanks mum xx fanks sausages xx

Categories: Music, Rockinpaddy

Step over the edge and trust?

May 19, 2016 1 comment
Tomorrow is a day I’ve been dreading and fighting against for the last five or so years. Finally, I have my assessment which will see my Local Authority begin to take more (all?) control over my Independent Living package.
The dread and fight actually is nothing against my LA, but the way nationaly my rights, choice and control have been slowly eroded against something that has worked, kept me safe, happy and…living it full!…No news headlines in yer papers, I won’t be on the news or have the media at my door, just a slow taking away and invasion on how I should live and justify my needs in order to live a life, participating, working etc. I need to place trust in my LA and will of course work with them, highlighting my objection firstand then my concerns fears and hesitence to let go if it goes wrong, I’m being asked to risk the way I live. I’ll have to trust that they honestly will deliver that “everything will be ok….and in fairness…It might be…..not knowing is another sick action of what this and previous governments are/have let happen.
I have to trust I’ll be ok even in the face of evidence of year on year cuts to Adult social care; them never having had experience of supporting people with high needs to live independent lives (why the ilf existed, LAs couldn’t…can they now?); and of course with no ringfencing of money to support those with the highest needs live an independent life!
And of course trust in not knowig how I am dealing with a major loss of two people key to my life in giving me belief in myself and the confidence to trust in my own experience, values & beliefs, my compass check that I’m going the right way.
I can trust to an extent because I’m lucky..lucky of having the amazing family, friends and colleagues I have around me who will fight on alongside me and the fact we Disabled People are resliant and strong in the face of it! #WeFightOn #BecauseWeAreWorthIt #SaveIL #DropTheFButHopeYouDontDropOurRightToLiveTheLivesWeChoose
Categories: Rockinpaddy, Uncategorized

#30JuneILFcloses: 1 day till closure

#30JuneILFcloses: No big deep emotional blog today, its a simple one.  This is wrong, we fight on. Off to Downing Street. #SaveILF


Thank you for all the support, love and messages sausages. xx

Thats Independent Living – The right to make decisions over what is important to you; Choice; Control; Equality; A Human Right; Autonomy; Having true Quality of Life;

Please do share link or #Retweet or fb share #30JuneILFcloses blogs if ya fancy, ta sausages xx
Please do sign the petition if you feel strongly about this, your signature does make the difference:

#30JuneILFcloses: 2 days till closure

#30JuneILFcloses: As I can’t sleep I’m posting early. I should be on your telly box at breakfast time and then maybe your radio boxes. My head is spinning with all the arguments we have battled with over the last five years since this all started with ILF being closed to new applicants. Put simply we know this is wrong and doesn’t make sense. We know the ILF works and should be broadened not closed.  

The reason it works is because it was developed with disabled people and wasn’t about care but living. It’s about putting the choice and control with the individual. Living not just existing. 

Let’s be clear, This is a closure and not a transfer as the government would like you to believe. I think they thought as we were a small number this one would quietly slip away, oh how wrong, just as wrong as the decision itself. 

The closure doesn’t make economic sense. ILF administration was 2 or 3% compared to local authorities being much higher (12-16%) that difference will be lost before it’s even distributed. The transfer budget only goes to April 2016 and we don’t know what will happen then except that local authorities in context are making further cuts and savings to services all over the country. 

We also have been proven right that this had already created a postcode lottery with local authorities dealing with the transfer budget in different ways and the full transfer hadn’t eve happened yet! Some have ring fenced till April or an assessment is carried out (costing more money even though in transfer that’s already been done) some have already cut packages offering some inhumane and un-dignifying alternatives  to living (wearing a pad is not an alternative to going to the toilet is it?). 

We also know that the transfer fund is already a little less than the ILF budget was as in the allocation an attrition rate has been taken off before it even gets to local authorities. 

The rhetoric that we will be protected is very different from our real lived experience. As a disabled person equality and rights is not a theory it comes from a lived experience of battling and addressing the barriers we have to deal with on a daily basis that others may never or only from time to time have to face or deal with. Most for example don’t have to justify how or when they get up or who it is that does that. They just do it and get on with living, let alone have to fill in a form explaining that and it being given a monetary value (do you know how long it takes you to go to the loo or eat & how much that therefor costs). Most just get on with those basics to get on with the living bit.  That’s all I want too. Because I need support to do it I need support and all I need to do it is the choice and control and autonomy to manage all that for myself. I just want to get on with my life I really don’t want to be a campaigner, I want to go further than I think, learn more, do more and do it all a lot better. 

Hopefully over the last thirty days I’ve tried to articulate the difference between Independent Living and care. It’s about living and not just existing. 

It’s not just about me. It’s about an equality of relationship with lots of others, my family and loved ones, my friends, colleagues, those i work with and those I come into contact with. It’s about the future for disabled people and young disabled people. It’s about jobs, for me protecting an amazing hard working team of pa’s who know and understand and have high quality skills and competence to support me achieve all the above. 

What is clear is the ILF closes in less than two days. Tomorrow will fly by and then the battle will go on. The impact of closure will be slow, like a drip drip type effect and we don’t know how it will play out, that in itself is another reason not to close but the evidence does not make it look good. 

We can’t forget the freedoms we have had and can’t let them slip away till everyone forgets what’s possible and so the battle  must and will intensify. The law has not protected what is enshrined in the United Nations convention, article 19, our right to Independent Living and so we must fight for some sort of comprehensive legislation that addresses and protects that right. 

Hopefully then I can get on with making some music sausages, mind you nothing will ever stop me doing that!

Right 4.30am,  a little snooze before I go & say morning to Bill & Loiuse and maybe/hopefully Carol (oh how I wish we could chat about music or adventures with drinking straws or funny things that happened getting Schimmel into a car/across London/into my house etc). I am as you can tell, a bit excited about meeting them but nervous that I do our fight the justice it so deserves from me…..we’ll see I guess?

photo of my brilliant PAs past and present taken by Benjamin Mole

Thats Independent Living – The right to make decisions over what is important to you; Choice; Control; Equality; A Human Right; Autonomy; Having true Quality of Life;

Please do share link or #Retweet or fb share #30JuneILFcloses blogs if ya fancy, ta sausages xx
Please do sign the petition if you feel strongly about this, your signature does make the difference:

#30JuneILFcloses: 3 days till closure

#30JuneILFcloses: Off too BBC in Salford to chat about #SaveILF You might see me on your tellybox in the morning! There was  me thinking my blogs would get more deep and meaningful as we got closer to 30th June. However with every day drawing closer every day things change and tbh I don’t know whether I’m coming or going!  The battle goes on! #SaveILF

Thats Independent Living – The right to make decisions over what is important to you; Choice; Control; Equality; A Human Right; Autonomy; Having true Quality of Life;
Please do share link or #Retweet or fb share #30JuneILFcloses blogs if ya fancy, ta sausages xx
Please do sign the petition if you feel strongly about this, your signature does make the difference:

Categories: Rockinpaddy, Uncategorized

#‎30JuneILFcloses‬: 6 days till closure

June 25, 2015 1 comment

#‎30JuneILFcloses‬: Today I’m working in the studio, trying to concentrate on my job, making and facilitating others to make music.  Excited about some schools work coming up! #SaveILF

I need to get a few myths busted before I do though.  ILF is not a benefit and so not part of the benefit cuts debate, its being pushed that way so the government can blurt out its rhetoric about its abhorent behaviour.  I do not pocket the money for myself, every penny is to support me to employ a brilliant team of PA’s to provide all the support I need to live and manage independently.

Independent Living is not about care (of course there is a relationship/cross-over) see the footnote below.

It is emerging that there is a view that I/we are somehow scaremongering about what is happening. That disabled people not on ilf are being ‘cared for’ (again footnote, this isnt about care) within the system fine. Believe it or not, I think about every action very carefully for that very reason.  Are my feelings justified/objective/considered.  A major part of my job involves building confidence of young disabled people to get out there and live the dream, so the last thing I would want to be doing is scaring people. The honest reality of what is happening is I don’t know what will happen and thats surely enough to say I want to hold on to somethng that works until I do know what will be in its place? I do know this closure has already created a postcode lottery with local authorities all doing different things. I do know my mail has increased from dsabled people up and down the country saying their local authority is cutting their package, cutting sleep overs, suggesting wearing a pad is an acceptable way of dealing with toileting overnight.

I’m proud to have been a collective of disabled people localy to have set up an oganisation supporting Independent Living.  The case load of this one organisation, suggests different from the governments rhetoric that the system is fine and that it will cope with us (assessed as having high/severe needs), the evidence doesnt stack up. So maybe the feeling of being a bit scared at the moment is justified by the “real lived experience of what is happening” and not by our making?

Ok time to focus on music, I’m feeling low today, worried about the impact of all this fighting on my work/life bank balance.

Thank you to everyone (over 500 messages yesterday) who supported me yesterday. In fairness our shouting was perhaps a bit more real and genuine, perhaps a little less nonsense than the ego-trip, career stepping (some MP’s/ministters/nt all) shouting going on in the chamber. Those Para games certainly has helped us develop our sprint speed and team work ay Sausages! Right….music….save me…and the ILF if ya can!


Thats Independent Living – The right to make decisions over what is important to you; Choice; Control;  Equality; A Human Right;  Autonomy; Having true quality of Life;

Please do share link or #Retweet or fb share #30JuneILFcloses blogs if ya fancy, ta sausages xx

Please do sign the petition if you feel strongly about this, your signature does make the difference:

#‎30JuneILFcloses‬: 7 days till closure

June 24, 2015 2 comments

#‎30JuneILFcloses‬: I’m off to the Houses of Parliament for the final time today before the ILF closes.  It won’t be the last visit because from 1st July my visits will be to fight for legislative change to protect our rights to Independent Living.


In my mind I think back to 1994/5 and my first experience of DAN, brilliant & empowering. I remember us saying then…nobody is listening, you dont hear us, we write letters, sit on advisory groups & committees and still our voices aren’t heard.  Its time for action!

Thats Independent Living – The right to make decisions over what is important to you; Choice; Control; Equality; A Human Right;  Autonomy; Having true Quality of Life;

Please do share link or #Retweet or fb share #30JuneILFcloses blogs if ya fancy, ta sausages xx

Please do sign the petition if you feel strongly about this, your signature does make the difference: