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.
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.
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).
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 Test Result: Ritvo #Autism #Aspergers Diagnostic Scale-Revised #Aspie (thecreativecrip.wordpress.com)
- @CreativeCrip Rdos #Aspergers Test Result #Aspie (thecreativecrip.wordpress.com)
- Awkward in Person, Graceful on the Page (psychologytoday.com)
- Why do we have to suffer? (aspiecircusgirl.wordpress.com)
- Video | Asperger’s Syndrome vs. Nonverbal LD (enjoyhi5autism.blogspot.com)
- Asperger’s, agoraphobia and depression are destroying my life and my marriage (guardian.co.uk)
- New Book by AJ Scudiere Features Heroine with Asperger’s Syndrome (prweb.com)
- Fresh fuel reignites Asperger’s debate (sciencedaily.com)
|Total score||Language||Social relatedness||Sensory/motor||Circumscribed interests|
|Test taken by you on 10 June 2013||207.0||19.0||104.0||48.0||36.0|
|Test taken by you on 31 July 2013||210.0||21.0||93.0||57.0||39.0|
|Your average score is||208.5||20.0||98.5||52.5||37.5|
|Threshold values for suspected ASD||65.0||4.0||31.0||16.0||15.0|
|The average score for males with ASD (368 people took this test)||140.8||11.1||69.8||33.5||26.5|
|The average score for females with ASD (228 people took this test)||165.0||13.1||77.7||42.5||31.7|
|The average score for males with suspected ASD (1591 people took this test)||146.9||11.3||75.4||32.7||27.6|
|The average score for females with suspected ASD (1560 people took this test)||152.0||11.5||74.0||37.1||29.4|
|The average score for male neurotypicals (505 people took this test)||83.8||6.6||44.7||17.2||15.2|
|The average score for female neurotypicals (615 people took this test)||77.1||5.2||38.9||18.9||14.1|
If you wish to find out more about this test you can read the original research paper here
- Online Tests, Life on the Spectrum (lifeonthespectrum.net)
- The Self-Employed Aspie (musingsofanaspie.com)
- Temple Grandin on “Happy Aspies,” Autism, and Start-Ups (inc.com)
- Why do we have to suffer? (aspiecircusgirl.wordpress.com)
- What box do I fit in? Psychopath, Aspie, Schizoid? (schizoidspeculations.wordpress.com)
- Aspergers (codeproject.com)
- 10 Positive Traits of Asperger’s (marickstudioscincinnati.wordpress.com)
- Awkward in Person, Graceful on the Page (psychologytoday.com)
- Fresh fuel reignites Asperger’s debate (medicalnewstoday.com)
- On Being Aspie …. (myaspiefiles.com)
Jason Arnopp @JasonArnopp (Author, scriptwriter. Doctor Who, Sarah Jane, Friday 13th) is working on a book regarding professional (Fiction) writers and Depression. He asked me to contribute. This is what I had to say…
On Writing & Depression: Creative Down-swings
A well-meaning new-found long-lost relative decided to comment on my NaNoWriMo 2011 Facebook entry referring to my struggles to participate because of Major Depression: “truth is I’m strategic…” she wrote. “…the goal is achievable you have to trust yourself to make it happen.” Her sentiments are typical of the simple-minded inspiration porn that I am forced to put up with routinely. My response is always that I do what I can, when I can, but unfortunately more often than not it means struggling immensely to do not very much at all. I give myself pep talks and formulate strategies to try and be productive to no avail.
The greatest irony for me as a writer living with Depression has always been that I get my best ideas and am the most prolific when in a severe down-swing. I find that writing fiction, even Harry Potter fan fiction, is therapeutic in a way that Cognitive Behavioural Therapy has never been for me. I even managed to put this into one of my stories with a fan fiction-writing protagonist who proposed that “sometimes fiction serves a purpose in enabling people to live out their fantasies, purge their own demons or perhaps set a standard for themselves. It was only when people confused fantasy with reality that there was a problem.”Self-insertion? I won’t deny it. I’ve learned an awful lot about myself and my illness through writing and making use of my own lived experience (especially post-diagnosis in 2009). This in turn informs others including those who live with it – something still sorely needed to combat the stigma of mental illness. I would also agree that I lose myself in the gloriousness of creation process. This is even more pronounced during manic cycles of insomnia. Perhaps that’s why I have so many epic tales that remain unfinished after starting them nearly a decade ago and have failed to live up to the potential I’ve been told that I have. Depression has impacted every aspect of my life for good or ill, and my interests and ambitions as a professional writer are no exception.
Lisa J. Ellwood
@IconicImagery ( & Communications account)
#NaNoWriMo 2011 (#disability #spoonie #mentalhealth) – #amwriting (thecreativecrip.wordpress.com
#NaNoWriMo – Day 2: Not #fitforwork or anything else… (thecreativecrip.wordpress.com
@CreativeCrip in the media: #xmasathome #nyeathome interview GRAZIA Australia (thecreativecrip.wordpress.com
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.
- #xmasathome, #nyeathome and #virtualnye 2012: In Defense of Humbug – thecreativecrip.com (2012)
- #xmasathome, #nyeathome & #virtualnye 2012: @CreativeCrip suspended by Twitter, change of plan thecreativecrip.com (2012)
- Xmas at Home – Continuing the Momentum – prestoninstitute.com (2012)
- Christmas at Home and New Year’s Eve at Home – Building a Twitter Community – prestoninstitute.com (2011)
- Christmas At Home – How Could It Work? – prestoninstitute.com (2011)
- #xmasathome #nyeathome – no need to be alone over the Holidays – thecreativecrip.com (2011)
- #CreativeCrip #cripmas #xmasathome 2011 – thecreativecrip.com (2011)
- #virtualnye – a new @CreativeCrip #creativecrip campaign – thecreativecrip.com (2011)
- My New Years Traditions (2012) #NYEathome #virtualNYE #creativecrip – thecreativecrip.com (2011)
- My #VirtualNYE Campaign supporting #NYEathome : This is how I roll. – thecreativecrip.com (2011)
- My #VirtualNYE Campaign supporting #NYEathome : Photos! – cripisland.posterous.com (2011)
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.
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:
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.
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:
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.
- DWP Blunders, Exposes Dirty Washing in Public (HuffingtonPost.co.uk)
- Google Cache Strikes Again – Get Yer Atos Corporate Secrets (johnnyvoid.wordpress.com)
- Yet Another Disappearing DWP Document, Now The PIP Tender Goes Missing (johnnyvoid.wordpress.com)
- Bungling DWP Publish Atos Corporate Secrets on Government Website! (johnnyvoid.wordpress.com)
- Smoke and Mirrors: Remploy & Access to Work (thecreativecrip.com)
- #HardestHit Marketing 101 (thecreativecrip.com)
- #HardestHit Jedi Mind Tricks (thecreativecrip.com)
- Doubts over Remploy Future (nwemail.co.uk)
- We’re Still Unemployed (express.co.uk)
- Conference calls for New UK Disability Rights Network to Challenge Attacks on Disability Rights (dpac.uk.net)
- Remploy closures: “This callous coalition government have no sense whatsoever” (leftfootforward.org)
- Save Remploy Factories e-petition (epetitions.directgov.uk)
- Disabled staff hit out at Government’s ‘broken promises’ over decision to shut Remploy factories (dailyrecord.co.uk)
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.
A few of my Twitter followers have noticed that my @CreativeCrip account has been suspended.
This was unexpected and completely without warning. I am of the opinion that this has occurred because of malicious reporting on the part of adults who find it impossible to either block or ignore those whom they don’t like or disagree with or both. The circumstances are thus:
On 27th September someone I used to follow (but who still appeared in my timeline) said
“Depression doesn’t kill you, you do.”
I retweeted this along with my own comment that I found that assertion to be patronising and unhelpful. The following day he had a go at me – knowing that his rabid followers will immediately act upon any beef that he decides to have with other people. This is what he does – he gets his followers to go after people he doesn’t like or disagrees with.
Someone popped up and had a go at him. She doesn’t even follow me but decided to call him out (to me), saying that he and his followers had attacked her and accused her of being disablist for the observation that “disability is only one aspect of identity”. She had quite a bit to say to him in the main and kept copying me in.
Why I don’t know.
I was in middle of tweeting that she needed to keep me out of her sustained rants at him when my account was suspended.
It was *that* quick.
Mine was the only account suspended. Not hers. Not his.
Fast-forward several hours later. I tweeted the third party moaner from 1 of my 2 business accounts after the @CreativeCrip suspension & said “my @CreativeCrip acct is suspended thanks to the good Rev. In future pls keep me out of your chats w him. Thanks.” No response. She blocked me. I then looked through her timeline and saw that she was making an attempt to cosy up to him again, trying to get back in his good graces. Call me stupid, but there is no way in hell I would ever suck up to anyone who threw me under a bus and in so public and odious a way. Someone has suggested that this could be quite a clever little ploy by both parties – suffice it to say there is nothing that wouldn’t surprise me at this point especially considering who is involved. It’s not the first time something like this has happened on Twitter (or other social media platforms) and it sure won’t be the last.
It’s a funny olde world indeed.
So here I am fighting to get the suspension lifted. I have put too much hard work into @CreativeCrip to simply give up and possible start again: (1) that account has been mention in the Society Daily listings in The Guardian quite a bit and (2) my work through that account and The Broken of Britain also earned me a nod from Left Foot Forward in “Nomination for most influential left-wing thinker: The disabled rights community“
All are noted on my LinkedIn Profile here: uk.linkedin.com/in/iconicimagery
Needless to say – at the moment I feel like I have had enough of Social Media, and Twitter especially.