Sophie Partridge xx
I haven’t known what to write. There’s a very big bit of me that it hasn’t all sunk in. My drafts n words don’t even touch the surface of all the things I want to tell the world about how important Sophie Partridge was to us all…and me.
I’ve kept busy cause that’s what I do. I surround myself with lovely people and be creative, do stuff and I feel blessed/lucky as a result. Since last week Soph has made me realise we always need to do that, bring lovely friends together and be close to each other and be happy, life is brutally short.
I’ve seen so many beautiful and true things written or posted about Soph by all who would equally as I rightfully say they were close to Soph. That’s because that was the reality of Sophie. she had so many close friends because that’s what she did…made you feel close..important…happy…joyous..listened to..loved….cared for…special and I will miss that feeling, I already do. I already miss the security of Soph not being around to check out with. [note: Soph would hate n poke me for using special or care in describing her but I mean both words in there truest meaning here,…. plus me n Soph could be naughty with the crap words used around us and have a little fun/giggle wiv em], so deal wiv it xx.
I guess simply it could be explained as true friendship and love that I always felt around Sophie a friendship and love I I feel I’d fail to give back as well as Soph ever gave to us all. I saw her do all this in awe of her at work and at home with our tea n hula hoops or any of the times we spent which now I know we’re always to short.
She would be there, to chat too, to have a laugh with, to do world changing things with, to have a cuppa with. She had that way about her that was the way to really listen, make sense of stuff, cut through the bullshit and say the right thing, the thing that needed to be said. If it needed to be fought for because it was right then she was there, stronger than any.
Then if you complimented her on any of it she’d dismiss it in that kind of ‘Sophie way’……”Yeh….i don’t know..I don’t know really…yeh…lets have tea/tinkle time”
I’ve felt close to Soph on many times and felt all that stuff above everytime, but one time that mattered was when she asked me to help with writing/exploring music for Semmersuaq. It was during the time the ilf battle was going on (another time Soph was at her strongest, fighting). There’s loads I’d want to say about this time but my words aren’t really expressing it all. It was everything. It was time, ime with Sophie, being creative, making music, tea, hula hoops, being at home, being filmed, then private then panicking I hadnt captured stuff well enough for what Soph desreved.
It was just a flavour of what we had hoped to do with that lovely show Soph had created. I’m gutted we can’t carry that and many of the journeys we had planned on. Your drum, everything……
I came to Carlow for work the night after Soph passed, rang close friends to speak the best I could. Coming here felt right. It was beautiful, creative and the work all about peoples value…in fact the show was #whatamiworth..which took me straight to Soph, it was the right thing to do. The show reminded me of when me n Soph discussed and helped creat #BecauseWe_R_WorthIt as a retort to the Tories closing the ilf.
We all know what Soph is and always will be worth and I’ll miss you. Sorry I’ve been so crap at expressing it.
MiSoph
Love you
Mijohn always xx
Sophie Partridge xx
I haven’t known what to write. There’s a very big bit of me that it hasn’t all sunk in. My drafts n words don’t even touch the surface of all the things I want to tell the world about how important Sophie Partridge was to us all…and me.
I’ve kept busy cause that’s what I do. I surround myself with lovely people and be creative, do stuff and I feel blessed/lucky as a result. Since last week Soph has made me realise we always need to do that, bring lovely friends together and be close to each other and be happy, life is brutally short.
I’ve seen so many beautiful and true things written or posted about Soph by all who would equally as I rightfully say they were close to Soph. That’s because that was the reality of Sophie. she had so many close friends because that’s what she did…made you feel close..important…happy…joyous..listened to..loved….cared for…special and I will miss that feeling, I already do. I already miss the security of Soph not being around to check out with. [note: Soph would hate n poke me for using special or care in describing her but I mean both words in there truest meaning here,…. plus me n Soph could be naughty with the crap words used around us and have a little fun/giggle wiv em], so deal wiv it xx.
I guess simply it could be explained as true friendship and love that I always felt around Sophie a friendship and love I I feel I’d fail to give back as well as Soph ever gave to us all. I saw her do all this in awe of her at work and at home with our tea n hula hoops or any of the times we spent which now I know we’re always to short.
She would be there, to chat too, to have a laugh with, to do world changing things with, to have a cuppa with. She had that way about her that was the way to really listen, make sense of stuff, cut through the bullshit and say the right thing, the thing that needed to be said. If it needed to be fought for because it was right then she was there, stronger than any.
Then if you complimented her on any of it she’d dismiss it in that kind of ‘Sophie way’……”Yeh….i don’t know..I don’t know really…yeh…lets have tea/tinkle time”
I’ve felt close to Soph on many times and felt all that stuff above everytime, but one time that mattered was when she asked me to help with writing/exploring music for Semmersuaq. It was during the time the ilf battle was going on (another time Soph was at her strongest, fighting). There’s loads I’d want to say about this time but my words aren’t really expressing it all. It was everything. It was time, ime with Sophie, being creative, making music, tea, hula hoops, being at home, being filmed, then private then panicking I hadnt captured stuff well enough for what Soph desreved.
It was just a flavour of what we had hoped to do with that lovely show Soph had created. I’m gutted we can’t carry that and many of the journeys we had planned on. Your drum, everything……
I came to Carlow for work the night after Soph passed, rang close friends to speak the best I could. Coming here felt right. It was beautiful, creative and the work all about peoples value…in fact the show was #whatamiworth..which took me straight to Soph, it was the right thing to do. The show reminded me of when me n Soph discussed and helped creat #BecauseWe_R_WorthIt as a retort to the Tories closing the ilf.
We all know what Soph is and always will be worth and I’ll miss you. Sorry I’ve been so crap at expressing it.
MiSoph
Love you
Mijohn always xx
I don’t want Social Care thanks!
Challenging The dominant social care conversation for Independent Living
or
I don’t want Social Care thanks!
The purpose of this blog is an attempt to start to rebalance the current focus of policy makers, the media, and others away from Adult Social Care (ASC) to a focus on Independent Living. It is felt that ASC is the dominant focus and asa result completely pushed aside what we Disabled People are fighting for which is indeed something very different. There is an assumption that ASC & IL are the same thing. We could argue that many of the principles of Independent Living have come out of our efforts to move away from being cared for.
For over 30 years we have experienced and shown that Independent Living is a significant experience in which we can live our lives as equal citizens. The reason for writing this piece is that the values and principles of Independent Living are critically under threat while discussions around ASC are so dominant and in particular they seem to be slipping further from our reality since the closure of the ILF and with growing evidence of the poor implementation of the Care Act.
Of course I want and need support and resources to live my life but these are not found in receiving a service that doesn’t meet my needs or that doesn’t reflect my aspirations to live a full and equal life. It can be argued care has an emotional attachment, a human need we all give & share. Independent Living is a Human Right that needs to be supported, respected and protected through policy and practices which promote equality, dignity, choice and control.
In saying what the difference is between ASC and Independent Living, a good starting point is to look at the different language used. The real importance to this is that behind each word is a real lived experience that has real attainable meaning. For example the idea of saying Independent Living is about freedom could be argued as a massive unmeasurable concept. However in the context of IL the individual experiencing having control over an aspect of our life such as getting up, when you want & how you want, gives that concept a real simple meaning, particularly if you had never had that control in the past. This type of freedom is and should be a day to day lived experience for all Disabled People as equal to our non disabled peers.
Unpacking some of the principles (I dont confess that this is complete, more a starting point) might help us see the wood for the trees and I hope help those who’s minds and practices we need to change; that my/our worries and concerns since the ilf was closed, is not around social care but the right to Independent Living. Independent Living might be seen as complex and different to the individual, but it is not complicated.
Although Independent Living can mean different things to each individual there is commonality, and clarity around the principle, Independent Living is very simple. It is built on our experience and reflects better than ASC our expectations and aspirations to lead full and active, valuable lives. Our experiences have helped to shape many social policies and systems such as the use of direct payments. Significantly the principles of Independent Living are a Human Right. It applies inclusive of age, impairment, condition, gender, life experience, diagnosis, chosen identity or imposed label.
This conversation is trying to be very real and based upon our lived experience and application. I’m trying to not be too wordy or use too much jargon. This purpose is trying to be more. inclusive and open up conversation so that the principles and values of Independent Living can be clearly understood and hopefully put back on the agenda and ultimately ptocted in legislation, policy and practice, so we can get on with our lives, which is what we’d love to be doing!
We often use two columns to express the difference between the social model and so this might be useful in showing the differences between ASC and Independent Living and why Independent Living is so important to us and why we are fighting for something different from ASC. It might look a little like this:
You could go on; supporting others in my life, interdependence, purpose as apposed to filling in time or doing normal day to day activity like watching paint dry…
To define Independent Living is sometimes not helpful as it immediately boxes it up and limits its possibility and meaning for each of us who experience it in different ways. Looking at the table above Independent Living arguably doesn’t have too many draw backs, it makes sense and for any of us that have or are living it, it is precious and central to our way of getting on.
Perhaps the only draw back ( and on any good day you would say is a total advantage) is that you have to know yourself very well, this can lead to an over analyse of things like time & the cost of time on my budget, which nobody else would really have to think about. How long it takes to get dressed or ready or to head to the loo. I’ve also realised that differently from my younger days I think more of the value or cost of every hour. This means I have to plan well to be spontaneous! Yes a contradiction in terms but it can and has to be done if you want a private life whilst needing the support of a pa.
A different challenge is in the lack of support for Independent Living. For example when your not well you still have to manage your pa’s or when you are recruiting or dealing with employment issues you need that legal brain. You still have to think ahead.Of course recruiting and hr issues require expertise and even legal knowledge and there is very little support for that and it has caught some out only adding to the battle of just getting on with life. It could be argued that disabled people face extra difficulties just to be independent . Independent Living of itself is near enough a full time job on occasions. But it’s worth every bit of effort because it’s freedom! Something that one experienced can never be taken away.
The draw backs are challenges but are not so insurmountable that Independent Living would lead to a conclusion that it doesn’t work or is not worth having. The challenges are created by a lack of resources and support. Independent Living Is more than just merely existing, getting up, going to bed, being fed etc…its about purpose and value to our lives. These few difficulties identified are more about the systems & resources to support Independent Living rather than a problem with Independent Living itself.
ASC & IL are very easily being muddled up as the same thing, both in legislation (we saw how difficult it was to get IL recognised in the care act, the ‘well-being principle’ at least gives us a small flag to use and wave, but we know in practice that this is not being understood as the right to Independent Living.
Another concern is that ASC in our media is normally just described as being an issue about old people (an ageing population is a phrase used over and over agai) and as result ASC and IL are conflated again. Of course these principles and values are of concern to all people of whatever age and the issues will of course have similarity but equally there will be significant differences. However if these dominant stereotypes go left unchallenged we will see both Social policy around equality & Independent Living slip back as it has already been identified, and so our human rights will be further denied.
It pushes back, those principles of equality we have fought so hard to get recognised. Perpetuating the message that social care is only about an ageing population also influences heavily a system that doesn’t meet the needs of young disabled people and disabled people of working age. This is another reason why our battle to have Independent Living has and is so important. We need to be able to shape our support to live the life that we want and not a life that has to fit into a prescribed system. The ‘Stay Up Late’ campaign is not over yet
The current conversation that social care ‘in crisis’, is an unhelpful distraction in which, all energies are being focused on addressing that. However I guess it is an opportunity to put across the importance of a non medical model set of principles of IL in the context of our whole lives (so education, housing, adequate income, work, a social life, rights and participation) slip further back.
The need for some reframing is a critical activity to re-invigorate the passion with which we believe as to the importance of IL. It is needed to try and change the discussion so that our voice as Disabled people is more fairly represented, heard and acted upon…isn’t that how the ILF began? Co production in which disabled people were equal and helped to carve the solutions to our own lives. This reframing must give us the confidence to challenge the dominant focus with the issue that we feel is important and should reflect our lived experience. I would argue that our experience of Independent Living when resourced and supported and could hold some solutions for many of the challenges faced by ASC.
I’m not trying to be too academic in this paper but endeavouring to help my/our understanding of what makes Independent Living really different in the hope that those that don’t or cant see the difference take on our concern and realise we are not going away or giving up on this. In some ways I’m not trying to over analyse or apply a critical theory, argue and counter argument, others do that far better than I.
The conversation & debate for Independent Living must be re-ignited, the dominant language and focus has to be challenged. We can’t let these principles slip away just because someone else has decided the focus should now be about ASC. We need to lead and shape the discussion around our own lives , its not enough just be allowed in to speak and fit in to a different discussion that doesn’t reflect fully our concerns.
This is not a sad song….
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..
So…..
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?)
#MusicToSmileBy
????
Fanks mum xx fanks sausages xx
Step over the edge and trust?
Its been a while
Lots going on as the battle for ILF is far from finished and with new opposition, things are set to get a bit spicier, we too have a few surprises up our sleeve to come so watch out nearer to Christmas.
Make sure you sign the stop changes to Access to Work petition, another bonkers backwards step by our government.
I’m over in Ireland with my beautiful mum and will be here for a long while. She set us a challenge so if you can help or share, it’d be great. thanks for now. https://www.justgiving.com/teams/rockinpaddy
#WeFightOn – The ILF closed till further notice
The ILF is closed till further notice. Yes, only till further notice….we will now begin to claw back all the freedoms won over 30 years. Yep, drop the F, I don’t care what we call it, today marks the beginning of our fight to save all the principles I’ve tried to articulate over the last 30 days. #WeFightOn Both the Tories and Labour Party (as we were told yesterday, they all know that it will have a negative impact on some of us, but they let it happen and spun an old load of flannel to justify their nonsense) and even the Justice system have failed Disabled People and our allies.
So we now move forward until we achieve comprehensive legislation change to protect Independent Living as agreed in the United Nation Declaration of Rights for Disabled People: Article 19.
#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: https://you.38degrees.org.uk/petitions/defend-disabled-people-s-right-to-independent-living
#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: https://you.38degrees.org.uk/petitions/defend-disabled-people-s-right-to-independent-living
#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: https://you.38degrees.org.uk/petitions/defend-disabled-people-s-right-to-independent-living
Rockinpaddy 