Level Unlocked: Crisis Point

It’s one month since Indian Country Today Media Network unexpectedly went on hiatus and ceased active operations. I’m in trouble. Most frustrations I have are not unique even as a multiply-disabled doubly neurodiverse Nanticoke and Lenni-Lenape Native American WOC, but they are humiliating.

https://storify.com/MochaLisaccino/crisis-point

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STORIFY: Depression, Disability, and WOC #disabledWOC

 

When not being summarily ignored and erased, WOC on Twitter discussing Depression and other forms of Neurodiversity and Disabilities are routinely shamed for not being the “strong” women we are stereotyped as by WP and other POC. *ANGER AS AN INDICATOR OF DISTRESS* is never considered.

 

READ THE FULL TWITTER STORIFY
by me as @CreativeAspie

Another #invisibleillness #Disability Diagnosis: Gilbert’s Syndrome

Gilbert’s Syndrome is another complex invisible illness / disability I was diagnosed with. It is a condition that goes a long way into explaining why many medical treatments and diet changes don’t work for me. Unfortunately no GP wants to document it, including the one who make the discovery.

The problem is that conventional medical wisdom dictates that GS is harmless despite suggested heredity links. However, there are studies that show that those diagnosed with the condition have the many of the same debilitating chronic illnesses in common (ex: IBSFatigue), the risk of recurring bouts of jaundice aside.

Following is a link to a UK-based GS Patients support organisation.

http://www.gilbertssyndrome.org.uk

@CreativeCrip #Aspergers Referral

NEWZ!!

I’ve been referred to an #‎Aspergers‬ Specialist. I will see her several times in next month!

AND: Im with a Primary Care Mental Health Team. No changing staff like the old Community Mental Health Team. This Specialist is said to be the best in my area. They will be looking  at Bipolar too instead of the Major Depression diagnosis I currently have (manic episodes are contradicting that and the 200mg Sertraline daily does nothing for them).

 IMPORTANT NOTE:

The Disability / Mental Health  Assessor said it was vitally important to look at & treat the WHOLE person rather than looking at everything piecemeal. In her opinion the reason why CBT FAILED is because no one has considered anything but Major Depression and/or me being a hypochondriac when I have other health problems that are well-documented. She also couldn’t believe that no one I’d seen so far in last 3-4 years didn’t think to ask ME what *I* thought about my disabilities / problems! She said flat-out that CBT isn’t the cure-all for everything & especially for people with complex disability & illness.

If I am an Aspie – then other health issues could be sorted out simply by addressing that – CBT won’t help me.

@CreativeCrip in the media: #xmasathome #nyeathome interview GRAZIA Australia

NEW at thecreativecrip.com

I was interviewed recently for Grazia Australia regarding the #xmasathome #nyeathome Twitter campaign for people who are alone during the Holidays. Writer/Editor Vanessa Lawrence (@NessLawrence) gave me a great Christmas present in the form of a PDF of the final article as it appeared in print.

You can read it HERE

Related articles:

#xmasathome, #nyeathome and #virtualnye 2012: In Defense of Humbug

 

I was interviewed recently for Grazia Australia regarding the #xmasathome #nyeathome Twitter campaign for people who are alone at Chistmas.

What Jay Smooth says in this vlog from 2009 sums up my general attitude about the Holidays perfectly.

 

#xmasathome, #nyeathome & #virtualnye 2012: @CreativeCrip suspended by Twitter, change of plan

I’m always alone and attempted suicide Christmas 2009.

Last year marked the first of what is turning out to be an annual Twitter event in supporting those of us who are either literally alone for the Holidays or feel isolated for whatever reason. Started by @prestontowers of prestoninstitute.com, I tweeted #xmasathome #nyeathome 2011 support as @Creative Crip  and blogged here about it.

New Year’s Eve was a bigger effort. Not onlydid I blog here (a few times in fact), I also did a feature on my latent Crip Island Posterous Blog replete with photos taken in-world during my own corresponding #VirtualNYE campaign event in the virtual world (aka metaverse) Second Life linked into a Google Hangout celebrating the new year as it was rung in across the globe.

Yesterday I woke up to the bitter reality of my @Creative Crip account being suspended without warning yet again. At first I decided to not bother, simply because of the significance of the @CreativeCrip identity to me and to others who rely on me for support. My mind was changed by sleeping on it and getting a few tweets from my followers. I was reminded of how many people look to me as a source of strength online despite my own fragility. I prefer to keep my Twitter activity compartmentalised, but when it comes to something like #xmasathome #nyeathome #virtualnye, keeping an eye on the bigger picture is vital.

So this year I’ll be tweeting support from @IconicImagery, the account for my Marketing Communications business and my new @GamerFems project (gaming, metaverse, feminism and all manner of geekery). I’ll also have another post or two about #VirtualNYE 2012-2013 in the next few days. The support is the thing that matters regardless of which account it comes from. So let it be written, so let it be done.

That’s how I roll.

Related articles:

Some “Claims” about DisRightsUK – the charity behind #HardestHit (AMENDED)

News on @DisRightsUK from Benefits & Work Email last week (originally tweeted via Twitlonger here, here & here).

The email is now publicly available in the B&W News Archive here.

 

DRUK WORKING FOR CAPITA ON PIP
We can also reveal that leading disability charity Disability Rights UK (DRUK) has signed up as a paid sub-contractor to Capita, to help the company carry out personal independence payment medicals in central England and Wales. There is no information on DRUK’s website about the arrangement with Capita.

The deal with Capita was sealed some time prior to 2nd May 2012, since when DRUK continues to claim it is considering bringing a court case to prevent PIP being introduced. The charity also still leads the Hardest Hit campaign against benefits cuts and heads up the Disability Benefits Consortium.

Capita’s bid document quotes DRUK as saying:

“Disability Rights UK is delighted to endorse Capita’s approach to learning, development and continuous improvement.”

Capita make it clear that they are paying DRUK not just to advise them on accessibility issues and to recruit senior disabled staff, but also to pass on information gained from DRUK members. The bid document explains that:

“. . .we have committed to employing a resource within DRUK dedicated to capturing the views and experiences of claimants and those impacted by PIP. DRUK has over 1,000 member organisations which should allow for broad capture of ongoing claimant experiences.”

You can download the successful Capita bid documents for Wales and Central England here:

http://data.parliament.uk/DepositedPapers/Files/DEP2012-1399/A_Capita_Doc4Part5TenderForm_LOT2.pdf

http://data.parliament.uk/DepositedPapers/Files/DEP2012-1399/Capita_Doc4Part6Annex2_Lot2.pdf

 

DisRightsUK is headed by the odious Liz Sayce, responsible for the Sayce Review “which was commissioned to look at how the £320m protected budget for disability employment could be used more effectively to support thousands more disabled people into work.”

DRUK & their partners are clearly working to a specific #fitforwork ideology given their shafting of Remploy – and this latest action as a so-called ally of disabled people shows just how twisted the Hardest Hit Campaign & Disability Benefits Consortium are also.

 

EDIT:

Disability Rights UK have updated their website to disavow havuing a contract with Capita, stating:

We are shocked that anyone could think Disability Rights UK would get involved in any way in delivering PIP assessments. We oppose the cut which will mean 500,000 disabled people are made ineligible for support. (A private competitor has claimed Disability Rights UK is seeking a role in delivering PIP assessments. This is incorrect).

Our only role is to ensure that disabled people have access to the best possible, independent information and advice on our rights, which we hope to provide for free. We are not sub-contracted by Capita. We advised Capita on how to ensure people got good advice on their rights. We are not capturing disabled people’s views or doing anything relating to Capita’s delivery – we recently turned down an invitation to be part of their reference group.

We did have discussions with Capita – but decided we would not work with any PIP contractors other than in our core role as providing rights based information and advice to disabled people. There is no contract.

 

Interesting that ATOS is lying re DPAC and DRUK claims same re Capita.

Note (1):  the PDFs that Benefits & Work included in their story regarding DisRightsUK & Capita are no longer available via the specified URLs.

Note (2): A couple of the PDFs referred to by Benefits & Work are accessible via Google Cache:

Thank you to @boycottwokfare for the tip. Both files can be saved to Google Docs and downloaded via Google Drive.

See also:

Tender documents for the delivery of Personal Independence Payment (PIP) Assessments [redacted]. 75 docs.

PQ 119481, PQ 119482, PQ 119483, PQ 119484 and PQ 119485

 

Thank you to johnny Void for the tip.

 

ADDENDUM: Changed “Facts” to “Claims” in title in a cynical bid to calm down Poverty Pimp defenders.

 

Related Information:

Meanwhile back at the ranch… CreativeCrip 8 Months #AfterESA

Regular readers of this blog and followers of the related @CreativeCrip Twitter account might recall in February of this year I rashly pulled myself out of ESA hell in favour of being self-employed. Being honest – I knew at the time that I still wasn’t ready to make such a move. Atos phoning me at home about another WCA was the catalyst. I literally could not face having to deal with them again and was so desperate that taking myself off the merry-go-round seemed like the only thing that would bring some relief.

It’s been touch-and-go ever since, largely because of the appalling lack of support from my old GPs & CMHT Psych Team. As I’ve said before, being a Native American merely Permanently Resident in the UK is not without problems. Every inquiry and appointment turns into an immigration interview – which is not only unnecessary it is quite inappropriate. One of the things that I constantly struggle with in trying to get help is that the professionals I am meant to be dealing with don’t leave their politics and prejudices at home. It’s much the same dealing with engineers from telephone companies, supermarket delivery drivers and neighbours. Everyone has really strong opinions on immigration, benefits and disability and there is no hesitation in imparting their wisdom to me no matter how malicious and ill-informed.

I’ve had to make even more changes in the aftermath of dropping my ESA claim.

  • My finances were in such a dire state that I had to borrow money to be able to move house and secure it by paying six months up front. There is no feeling of failure quite like crying to your mother at the ripe old age of 46 and having her cash in some of her pension to bail you out.
  • Instead of the accessible ground floor flat that cost £650/mo (downgraded from another ground floor flat that was £800/mo) in Cardiff, I am now living in an old split-level miner’s cottage in the Valleys that is nowhere near being disabled-friendly. It only costs £375/mo – great for someone with very low income. Accessible bungalows and ground floor flats come at a premium I simply cannot afford having already exhausted my redundancy on paying the mortgages of other people.
  • I need to find a new GP and essentially start all over again, hoping that I’ll get the support and referrals I need to manage my complex health needs. I haven’t found the courage to actually get myself out of the house to do this – and October marks three months living here.
  • When I moved house this past July I hadn’t seen my old GPs in over a year – our relationship was *that* adversarial. I just couldn’t cope with having to deal with them again knowing that, quite frankly, they really didn’t give a shit what happened to me as reflected in their attitude every step of the way.
  • The meds I need I haven’t had for some time now so of course my mood and manner are more down than slightly down (I’ve never been an “up” person and never will be). Having said that – there is a difference between Clinical Depression and just being in a foul mood. I am at least astute enough to recognise which is which in myself., but of course not having effective treatment for the Clinical Depression doesn’t help. I had been on 200gm of Sertraline a day but hypersomnia won out. The fact is that the Clinical Depression *is* really kicking my tail in every way, shape and form.
  • It seems that I may be an undiagnosed Aspie (and the results of Simon Baron Cohen’s online test support this along with some others) – but unfortunately before anything could be explored on that basis the old CMHT changed Psychiatrists, which they did every few months it seemed. I also missed a lot of appointments because I could not make them for physical or financial reasons or both. Making appointments three months in advance was never going to work. I also begged the CMHT to allow me to have phone conferences. This was laughed at…why I don’t know.
  • I have now been on a list to see a spinal surgeon for over two years. Every time I contacted the hospital they were annoyed and told me they would get back to me. Now that I’ve moved house I will have to get a new referral.
  • I am also overdue for knee surgery and this has severely impacted my mobility. Again I will have to get a new referral thanks to the house move.
  • I am angry about my situation and who I am because of it all the time… and no matter what I try it just doesn’t subside. As I’ve said before, all I’ve ever asked for is the help and support I need to get back to having a somewhat productive life. I’m not the only one in such a predicament but it astounds me still that politicians from all three major UK parties have strong opinions about disabled people and work, yet they seem to go out of their way to make things as difficult and inhumane as possible for us. Everything from Disability Living Allowance to Access To Work to Working Tax Credits is such a nightmare to navigate and especially for anyone who is completely alone.

Some people say that I have to “fake it until it’s real” and other similar Mindfulness pearls of wisdom along admonishments to “play the game” – both of which go down like a lead-weighted balloon. Being fake just does not compute. I am who I am and what I am is tired… just so very tired of the never-ending fighting for absolutely everything in every part of my life. And I am acutely aware that for every person who might *get* what I’m saying there will be a number of detractors. That’s fine… I can only ever tell the truth – my truth. It’s the same for all of us.

So here I am carrying on doing everything that I am told to do and hoping against all reasonable hope that things will get better.

 

 

Musings: Lifestyle Change vs. Political Change and Disability

Just replied to a comment on my blog from a disability campaigner now owning that his focus is on “lifestyle change rather than political change” (I’m one of more than a few people with criticism of the BioPsychoSocial mantras being rammed down our throats).

This is my response:

“Again – lifestyle change for disabled people not born into privilege will not happen without political change.”