Another day ending in y where I tackle ableism. Plus, my perspective as a Housebound #disabledWOC on the latest round of ‘Hashtag Activism” bashing.
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: ), the risk of recurring bouts of jaundice aside.
Following is a link to a UK-based GS Patients support organisation.
|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)
It is with regret that I am having to close down my self-hosted WordPress site thecreativecrip.com and revert to my old site which I continued to maintain at thecreativecrip.wordpress.com as a backup. Thank you to all my thecreativecrip.com readers for their support and I hope you will subscribe there. One of the perks of doing this is that it will be easy for others to share my work and re-blog through the WordPress.com platform itself.
I’ve had problems with my US-based web host, intrahost.com, for almost a year now after three years of outstanding service. It appears that the man behind the venture, Greg Kuiper, doesn’t care about his business now that he has a cushy job with popular hosting control panel techies cPanel. Paid invoices remain unprocessed yet I keep getting new ones charging me for “Parking Fees” and the same things that I’ve already paid for. At last check the total of nefarious charges was almost at $300. Domain renewals were not taken care of, which I and the few clients I had have to pay the consequences for. Help Desk tickets have gone unanswered for MONTHS. affiliate earnings remain locked in my account which I can no longer access as the intrahost.com website went offline a few weeks ago never to return. The Facebook Page has disappeared a while ago – or perhaps I was blocked from it for raising flags about web outtages that lasted more than a day with no action or notice by Intrahost. Greg is even a Facebook Friend (Ha!) – but ignores me at every turn now. No more Mister Nice Guy.
On top of all that, neither myself nor my clients are able to get the transfer codes we need to move our active domains elsewhere. My Iconic Imagery business identities and those of The Creative Crip are fortunately listed as being owned by me but I have no control over them at all now. I’m not sure what’s going on because although one domain expired, I’m not able to buy it through another registrar – as it seems to be locked with me still listed as the owner. My web hosting package obviously remains active but in my opinion it would be unwise to carry on making use of it with the owner of the servers having vanished into thin air (in a manner of speaking).
I trusted Greg Kuiper with my business and those of friends and professional connections. For just over 3 years the service was outstanding. I never saw this problem coming – and even transferred domains to Intrahost.com from a popular service I had used for years. Make no mistake, this can happen to anyone at any time and with any web host. There are a lot of one-man bands fronting as larger operations. This most definitely is the case with Intrahost.com. There are also many unscrupulous larger operations. The best anyone can do is research and think critically.
I contacted the Better Business Bureau who are effectively useless. I note that people are starting to complain to them about Intrahost.com but not getting anywhere through the BBB. Now I have to raise the issue with ICANN – and continue to let people know what happened as I try to rebuild.
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.
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.”
Renowned Atheist Richard Dawkins has suggested that the King James Bible be read in schools as a great work of Literature instead of using it as the arbiter of morality proposed by education secretary Michael Gove.
“Does the eucharistic bread merely symbolise the body of Jesus or does it become his body, in true “substance” if not “accidental” DNA? Prolonged wars have been fought over how we should interpret the words allegedly uttered at the Last Supper. Three bishops were burned alive just outside my bedroom window in my old Oxford college for giving the unapproved answer. Centuries-long schisms were based on nothing more serious than the question of whether Jesus is both God and his son, or just his (very important) son. Even bloodier wars were fought against a rivalreligion that sees him not as God’s son at all but just reveres him as a prophet.
I have an ulterior motive for wishing to contribute to Gove’s scheme. People who do not know the Bible well have been gulled into thinking it is a good guide to morality. This mistaken view may have motivated the “millionaire Conservative party donors”. I have even heard the cynically misanthropic opinion that, without the Bible as a moral compass, people would have no restraint against murder, theft and mayhem. The surest way to disabuse yourself of this pernicious falsehood is to read the Bible itself.”
What really caught my attention was his reasoning about the “betrayal” of Christ:
“In the words of Paul, the inventor of Christianity (or whoever really wrote the Epistle to the Hebrews), “without shedding of blood, there is no remission”. And the scapegoat couldn’t be just anybody. The sin was so great that only his son (or God himself, depending on your Trinitarian theology) would do. It was necessary for God to come “down” personally to Earth and have himself tortured and executed, after being “betrayed” (though why it was a betrayal since getting himself executed was the main purpose of the visit, is never explained, nor is the millennia-long vendetta against Jews as “Christ-killers”).“
The subject of the “betrayal” of Christ is always a bit of a hot topic on Twitter – not least because of Christian Fundamentalists in the US spreading their virulent, misinformed and extremely hypocritical peculiar breed of hate. A fellow campaigner dared to suggest that the events leading to the Crucifixion were a part of “God’s Plan”. As a woman of Faith (albeit a Native American one) that’s the view I’ve always taken with the Great Spirit:
“… everything on the earth has a purpose, every disease an herb to cure it, and every person a mission. This is the Indian theory of existence.” ~ Mourning Dove, Salish
I tweeted the following observation on Judas “The Betrayer” from Twitlonger on 12th May:
“My take has always been similar to the scenario laid out in the controversial film “Priest”:
Imagine you’re the soul known as Judas in “heaven” about to incarnate. You’re standing before God & he says: “I have a very important job for you to do but it means that you will be forevermore be misunderstood, maligned & hated. You can go down there or you can remain here, free from the burdens experiencing earthly concerns but humanity will pay a price for you having never been born.”
How brave a soul Judas must have been in Spirit!”
PRIEST (1994) on Judas:
“It’s doin’ me head in, this predestination business. Honest to God, it is.
And Judas and all that, yeah. I mean, he redeemed us, didn’t he? Judas, not Christ.
All Christ had to do was go to the cross and– bang, that’s it. He’s in Heaven and we all worship the ground He walks on.
Poor old Judas, he’s got to betray Him, then hang himself, then go down in history as a right dirty bastard.
Now, that’s sacrifice, ya know what I mean?
But God made him, do ya know what I mean ?
Judas, Saddam, Adolph and Joe, He made ’em. Now, that’s a bit tight on the human race. You know what I mean?
But it’s even tighter on them, isn’t it?
I mean, could you imagine them queuing up to be born and God turnin’ ’round saying, “Listen, Saddam, I’m sorry to have to tell you this, but you’re gonna be a tyrant. You’re gonna gas the Kurds and destroy lraq.” Well, he’d say, “No, ta, I’ll go to the back of the queue if it’s all right?”
Well, wouldn’t you?”
In the words of Sogoyewapha “Red Jacket”, Seneca – “Brother, you say there is but one way to worship and serve the Great Spirit. If there is but one religion, why do you white people differ so much about it? Why not all agreed, as you can all read the Book?”.
As for me, I am “a wee child toddling in a wonder world, I prefer to their dogma my excursions into the natural gardens where the voice of the Great Spirit is heard in the twittering of birds, the rippling of mighty waters, and the sweet breathing of flowers. If this is Paganism, then at present, at least, I am a Pagan.” ~ Zitkala-Sa.
Native American quotes from http://www.ilhawaii.net/~stony/quotes.html
- Richard Dawkins the arch-atheist backs Michael Gove’s free Bible plan (guardian.co.uk)
- Well-known atheist blesses ‘bibles for schools’ plan (express.co.uk)
- Is he a believer now? Atheist Richard Dawkins SUPPORTS plan for free bibles in schools (dailymail.co.uk)
- UPDATED: Why I want all our children to read the King James Bible – Richard Dawkins – The Observer (richarddawkins.net)
- Michael Gove’s biblical zeal is a ruse (guardian.co.uk)
- Prayer to St. Judas (original poem & discussion by Mark Nielsen) (markingtime4now.wordpress.com)
- Gove’s Bibles: good for schools? (guardian.co.uk)
Today marks the point of no return for many disabled and ill people. An estimated 40,000 – 100,000 of those in our community who have worked will lose our Contributory Employment Support Allowance (ESA) thanks to the new one year time limit railroaded through Parliament as part of the recent welfare reforms.
I’m one of them. Continue reading