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My Awful Week

From the end of last week and on into this one I’ve had a really bad ear infection in my right ear. The pain was excruciating, it was in my ear, down my jaw and there was redness behind my ear as well as inside. So my GP was afraid that I might have mastoiditis. Infection in the bone which can lead to brain ulcers, blood clots, deafness etc. While I’d been at my GP I’d also talked about a need for a painkiller for my general pain all over my body which another Doc at my GP Surgery thought might be due to Vit D deficiency. And as much as I was taking Vit D like a good girl and it might help in future etc, certainly couldn’t hurt, it wasn’t helping with my pain now because vitamin D is not a pain killer, it’s the latest trend (yes, I believe it’s a trend, medical trends happen, years ago they used to prescribe white bread).

So I got Co-amoxiclav and Sofradex ear drops for my ears and Codine for my pain. I was also sent immediately to the hospital for a registrar to look at to see if it was mastoiditis or just a really bad ear infection. That was the Monday, Monday was incidentally also the transfer day at my son’s new school so I was attending that in the morning almost fainting because I had to stand up for near an hour in the sun with just a wall and a walking stick to lean on, AND my ex turned up with never a by-your-leave or warning so I had to arrange quickly some impromptu access for him and my son at a local park because if it had just been a quick “hi-bye” situation my son would have been inconsolable. All the medical stuff happened in the afternoon.

It wasn’t mastoiditis it was just a really bad ear infection. Registrar put a “wick” in my ear to help my drops go down my super-small pathways, which was REALLY REALLY painful. We TOLD him that I had autism and thus sensory differences but of course as with near all professionals you could hear this information whistling as it passed over his head. Then we were given instructions to have the wick removed on Thursday but if symptoms got worse such as redness and swelling I was to come back immediately.

Symptoms got worse, least enough to worry my mother, who was watching me for 24 hours on the grounds that it was medical advice even though THAT MORNING I had told her that I would back off and give her some time to herself and not visit every week so she could decompress. So I was feeling guilty as a catholic priest in a whore house.

So we went back to the hospital on the Tuesday. While waiting in the waiting room for an emergency slot in the treatment room after all the scheduled ones I had the new, or renewed since I had it happen before way back in the mists of time, symptom of the whole of my legs and in my hands (especially tips of fingers) going through pins and needles then losing all sensation but heaviness and not being able to move them.. before movement and feeling would come back. This was something the registrar told me was unrelated to my ear (well, no Duh). I responded that “Of course, it’s not called Ears, Nose and Legs” which made his boss laugh. The wick was intolerable and I spent the time from when it went in to when it came out wanting to chop half my head off just so I’d no longer have to feel it, it fortunately however had done it’s job. The infection hadn’t spread but I was told to go off the Codine because some of my symptoms could be caused by Codine. Bye, bye, blissful pain relief, hello weak stand in Paracetamol. I was still to come in on Thursday to see how it was going but to keep using the drops and Co-amoxiclav. I was also told to go see a GP Doc ASAP about my legs.

Cometh Wednesday, son was finally back at nursery for the mornings until the end of next week and it was parent’s evening. In the morning I phoned my GP the instant the phone lines opened (still staying at my mother’s house mind you for her to watch me) and the receptionist, once she finally picked up after 8 “line is currently busy” hang ups, REFUSED to give me an emergency appointment with a Doc but had me go see the prescribing nurse at JUST after I’d drop my son off at nursery. I acquiesced and went, hobbling with great pain in legs PLUS occasional in-and-out issues, he was a nice melanin-enriched gentleman with deep voice who listened to my symptoms, took my vitals (normal as always because why the hell would my body be cooperative when it can be weird) then wrote a note to reception for me to give them saying I needed to see a Doc ASAP (me providing instructions from a Registrar at a hospital cannot be believed, but the prescribing nurse at their own practice is at least given credence), he believed I wouldn’t see anyone that day because of course it was short notice and a half day anyway since the surgery was closing after lunch for training. Fortunately however I got in to see a F2 Doc there on her 6 month training placement that morning about an hour later (so time enough to go home and angry squid with my mother over receptionists at GPs). I went back, she asked me about the general pain I mentioned as well and if I’d any thoughts about it. I confessed I thought I might have Fibromyalgia a while back and that one of the other Docs at the practice had stated that Fibromyalgia was very rare (starting sentence with “Let me tell you my take on Fibromyalgia….” and continuing with how rarely she diagnoses it) so went on with her thought that it was Vit D deficiency.

This doc told me the in-and-out leg stuff could be…. wait for it…. waiiiittt… A symptom of Fibromyalgia. However on my whole swathe earlier of blood tests (pre-infection) other than the Vit D I had also gotten a high inflammation result which could be an inflammation arthritis like my mother. BUT THAT’S NOT ALL FOLKS! She went to go confer with one of the senior Docs for a bit, came back and told me I would need to make an appointment to see a neurologist because it could ALSO possibly be Multiple Sclerosis. They need to test to be sure and then it would be queried for Fibromyalgia. So had all the referral paperwork to do to book an appointment to see a neurologist. Then went to pick up my son and then help my mother pack so she could go stay with her boyfriend at his house while I dog sat at her house and got my grandmother to babysit my son so I could hobble down to parents’ evening. (Son had absolutely glowing report).

Mum of course was now scared of the prospect of MS so we’ve both quietly put on our wish list for it to be Fibro or Arthritis but I highly doubt Vit D because this is the SECOND time I’ve had pain walking (first time being at age 19 and had to use a walking stick I nicknamed “Greg”) so it just felt unlikely.

Thursday arrived, mum at her boyfriends, me going through the hospital solo because I knew the route now and felt safer, different Doc this time around and quick in and out but I need to go back there next Wednesday because there are some “adhesions” that could be completely harmless but lets be safe sort of deal. Keep using drops, keep using Co-amoxiclav till end of packet.

Friday is here. I’ve booked my neurology appointment for 14th September when my son starts full days at his new school (earliest was 2rd of Sept but easier for everyone if my son is in school for full day of). I’ve had an upset stomach for days, my son has blocked up the only loo in the house so that needs to be fixed before I can use it and I’m not feeling too happy about that. Ear is on the mend and getting much better but the other pain I’ve had for months and months and months, isn’t. It’s also a travel day I have to take my son on a 2 and a half hour car trip to Norfolk and then do the 2 and a half hour trip home while he spends the weekend with his dad.

I’m exhausted, achey, my teeth especially hurt for unknown reasons, and frankly all I want to do is curl up in a ball and cry for England.

How was your week?

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Working as a disabled person, not as simple as just having a job

This is a big issue, another issue is if you’re NOT already in a job when you become disabled or if you were born disabled because often times you can’t find an employer in the first place willing to make reasonable adjustments so you can do the job when they could just go out and hire someone they don’t have to accommodate more than anyone else for.

These issues make people’s anger and nasty rhetoric to people who are disabled and on benefits even worse – because the fault just DOESN’T lie with the disabled person – and we’re still getting the blame.

Millly's Move

In many ways I was lucky, I become disabled whilst I was already in a job, I was able to negotiate reasonable adjustments and stay in the same role. In the last year I’ve had a few more health issues and staying in work has become more complicated. I now need a new wheelchair and a new home.  It sounds straight forward, go to NHS wheelchair services and get the wheelchair that fits my needs and, as both me and my husband work and we can afford a mortgage, buy a home that better fits my needs. Only it’s so much more complicated that that.

A year ago I was referred to Wheelchair Services by the Occupational Therapist I was seeing at RNOH Stanmore whilst inpatient. 6 months later I had an assessment, and found out they don’t provide wheelchair vouchers for powerchair users. Once we’ve moved to a house…

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While Outlander is a Real Winner for Women it Totally Fails Disabled People

Below is an excellent post by CrippledScholar on Outlander’s portrayal of the disabled Laird Colum MacKenzie (The MacKenzie) – here is a small foreword from me:

Yes- I had these exact same feelings, all of the exact same thoughts, when it came to Colum’s disability and portrayal in TV – now I talked myself into the idea that “with current medical technology it’s possible that there aren’t all that many actors/people with bowed legs” but frankly that’s a horrific thought process on my half trying to excuse their use of an actor I KNEW wasn’t disabled (because I’ve seen him in “Not Another Happy Ending” and some other shows/movies). I was still annoyed that they used a non-disabled actor for a disabled role – but I tried to rationalize it- and I shouldn’t have- because there is NO rational reason in this day and age to NOT use a disabled actor to portray a disabled character – there’s only discriminatory excuses. Anything people come up with it is a poor rationalized excuse – but not a legitimate reason – such examples as:
“Oh – he starts out as not disabled so we need to see the transition! So he HAS to be non disabled to portray the first part of the movie!”

Which asserts non-disabled people are totally capable of acting disability having never been disabled but a disabled actor OBVIOUSLY couldn’t fake being abled/well – no matter how often they go about that in their daily lives because they have stuff to do, while also artfully dodging that it’s just crappy screenwriting to excuse using a non-disabled actor for a disabled character and the script could be rewritten neatly enough if any effort was put in.

“Well he has this scene where he gets out of his wheelchair and walks/dances normally.”

Falsely implying and asserting that all disabled people are poor wee lambs that desire CONSTANTLY to be abled people so we should take pity on them – not portraying them as people who might actually be concentrating on dealing with their life as is and finding ways to love/like their life as is and not be constantly comparing themselves to abled people (guess what? Disabled people I know are NOT constantly comparing themselves to abled people in a “Oh woe is me – I wish I was like them.” sort of way – the comparisons I see are “I wish they’d bloody listen to me – they’re ignoring me and making me more disabled by society than I actually am by my disability.”). Stop pressing YOUR narrative onto THEIR story.

crippledscholar

Colum MacKenzie complete with CGI bowed legs on able-bodied actor Gary Lewis Colum MacKenzie complete with CGI bowed legs on able-bodied actor Gary Lewis

Outlander is returning to the Starz Network today. It is a popular series based on the novels of Diana Gabaldon. I admit I like the show. I read the books first so of course I cringe where the show deviates from the original.

The show is well made and truly entertaining. It has also been lauded for its complex portrayal of women and female sexuality. These assessments are pretty accurate though I take issue with the casting of the female lead. Jenny Trout describes her like this;

“[Caitriona] Balfe is slender, but her stomach isn’t flat and her breasts are natural. The lack of body hair is a bit disturbing, given the time period, but watching the actors together, the viewer sees two people being intimate with each other, instead of two sculpted dolls switching between acrobatic…

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Some days I’m an X-Man, some days I’m Magneto

Originally published on the Autism Acceptance Blog over on Quora.

Mornin’ All.

So I’m a ridiculous fan of Marvel and of the X-Men. Like some of my generation I got into Marvel backwards, I saw the 2000 X-Man movie first (a treasured memory of a trip to the movies with my grandfather) – got into the comics off that, and as such have lots of the movies, seen plenty of animations and read lots of comics.

But you have to understand – that what really appealed to me when I first watched X-Men and later got into reading it was that here were a group of people, all with different gifts that some were beautiful and amazing, and powerful, and some were not so great and kinda sucky. Here was this group of people who were different, both from each other in small ways and from the rest of the world in a larger way and they had a whole world against them. They were bullied, ostracized, and faced discrimination from the people to the governments. There was violence against them, death and destruction, they were killed and frequently blamed for crimes they either didn’t commit or were committed only by a small group of them. They spent their time trying to reach out to others like them so that they had a place to go to feel safe, to get trained up and either choose to remain there helping others or go out into the world. They could even go out into the world and be successful, they just had to make little accommodations for their differences. The X-Men in particular also spent time looking out for humanity, trying to save it from the things it couldn’t face by itself, and reaching out to them to try and ease Mutant-Human relations. Trying to build in accommodations into the system for mutants, to show in all the ways that they weren’t that different from the rest of the world. That while there were lots of downsides to being a mutant it wasn’t necessarily a “bad thing” and it didn’t have to be something the rest of the world feared or shoved away.

So here was me, 10 years old, already suffering from depression and stress related disorders (i.e. my hair was falling out because every 10 year old bulling victim with a disabled parent just needs alopecia as well), just getting my dyslexia and dyspraxia finally recognized, having my autism outright ignored and not diagnosed at that point and I was completely relating to the X-Men and other mutants on a very real and deep level for me.

These were my people. They got me and I got them. At least – so I felt – of course I knew they weren’t actually “real” and so they couldn’t “get me” because they didn’t know me. But I really got them.

I still relate to them. I like the idea of being a mutant more than being an alien rather than what’s suggested by those on “wrongplanet” etc. I like that idea more because mutants are still human. Yes – they sometimes get counted as a different species in the comics – or merely the next step in human evolution – but the term used to describe them is “mutant” – and for them to be mutations off humanity they kind of have to be humans first. When in M Day 90% of the mutant population were “depowered” they reverted to being human beings.

They are human beings and they are different. They’re different on a fundamental genetic level, they are different from humans as a whole and different from each other. They have a whole array of different levels and kinds of mutation affecting them in all different ways. And damn it all – I find it to be a really close analogy to autism for me.

So some days I’m an X-Man.

I want to ease Human-Autie relations. I want to build in acceptance and accommodations into the system. I want people to see autism as not something to be cured but something to be embraced as part of a person’s whole being. Something to be helped, different parts of it treated in different ways to the benefit of the individual autistic and taking in to account their individual needs. To stop generic clumping together, to end harmful stereotypes. I don’t want us to be segregated away or infantilized or dehumanized. I’m okay with there being a school or place for autistics to go to learn with each other – but I want that to be a choice – not a requirement. I want people to recognize that just because we’re not all savants in some area or another doesn’t mean we don’t all have value.

And then some days I’m Magneto.

Magneto, as anyone with even a passing knowledge of X-Men (or a search engine), is a bad guy. He’s a bad mutant who headed up the Brotherhood of Evil Mutants. He’s been hurt, badly, by humans. He’s seen them kill others for being mutants, he’s been targeted himself, he’s been left by partners who viewed him as a monster, he’s been used, tortured, used again. He digs a little too deep into surface offers from humans and frequently is paid for it by seeing horrible destruction hidden away that was waiting for him. He believes in mutant superiority and wants to rule over humans for their own good and the good of mutants who’ve been discriminated against so badly.

I don’t believe in autie superiority, I don’t believe in NT superiority either, and I don’t want autistics to rule the world. But sometimes – sometimes I can relate to Magneto’s anger. His pain. And sometimes to how that anger and pain can fuel a hatred. I get sometimes wanting to lash out and stop people from hurting me before they get a chance to try. I get angry with anti-vaxxers who fear autism so much they take a calculated risk that could cause the death of theirs or other children just so long as their children can’t possibly turn out like me or with people who support eugenics when it comes to those who are autistic, or those that want autistics to be segregated away for the good of everyone else. I get angry with news reporters who insist on bringing up the question on if such-and-such mass murderer was autistic or not and on mentioning autistic victims’ struggles with their condition when crime is committed against them in a way to paint their attackers as second victims, or bring up that someone’s autistic in news stories where it isn’t even applicable. I get angry with sainted mommy bloggers who insist how hard it is for them to have an autistic child. I get angry with “Autism Speaks”. I get angry with the people who see my lack of qualifications because of the people who’d rather hinder my education than pay extra to help it – or see my diagnosis in multiple areas and then spend their time treating me as a child or whole meetings being wall-to-wall ableist.

And I hate those people. I try not to – hatred is an ugly emotion and no one deserves it – but I do. I hate those people and whenever I get hurt by them I want them to hurt in return. I want them to hurt on such a deep level as I am so that they can have some empathy for what they’re doing to me and others like me.

And then I track back.

Then I recognize that mostly the reason they are hurting me so badly is because they are damaged and hurt on some level too. That as much as I have difficulty sometimes in picking up on non-verbal cues as to when I’ve hurt someone or how my well-meaning actions did so – they are equally blind to when or how they hurt me. I can try explaining but sometimes they just don’t want to listen- don’t want to see – because it’s really hard to be confronted with when and how you’ve hurt someone. It destroys a little of your self image so you can try and protect yourself from it by ignoring it- closing your mind to it when you’re called on it.

So when I recognize that. That moment when I connect my humanity to theirs. That’s when I go back to being an X-Man. That’s the moment when I gather up what few spoons I have left  – polish them off – and then try again. Because keeping going despite the hurt, it’s not something I can even stop myself doing. It’s built in now. I need to try and make the difference as much as I need the difference to be made.

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When Did It Stop Being “As Simple As That”?

The world is not made for human beings. In it’s natural state the world is not inclined to be “accessible” and “easy” for human existence. In it’s natural state human beings do not have a “right to life”.

But that’s okay. We don’t live in that world and haven’t for millennia.

You see the world we live in IS made for human beings. It is designed for us, by us, for us. We landscape, we chop down forests and woodland for growing food (or for making paper, or a thousand different reasons few of them as worthwhile as the trees), we have architecture and ergonomic design. We have roads and cars, we have planes, we have electricity and central heating. We have laptops and personal computers. We have e-mail, mail, phone and text. We have literally reshaped the world to fit us on numerous occasions, everything from indoor plumbing to ordering pizza online.

So when did it stop being “as simple as that”?

When did it, when it comes to dolling out money for facilities, roadworks, housing, making things accessible to everyone including the disabled become an issue?

Why is it the thought process on making things accessible for the disabled became a SEPARATE issue from making something usable at all? What’s so aesthetically pleasing, and usable, about stairs INTO buildings and in the middle of streets that ramps became unreasonable wastes of money? Where else is the money going? Why do people have to raise their own money to fix steps in the middle of the street through gorilla paving so that places became vaguely accessible to disabled people (in their family or otherwise)?

But lets say that the reason for the physical aspects relate to space, money and many different “reasonable” things in the minds that are behind such things. Lets start with something that would cost money anyway and so start with the minds of people.

Lets start say – with disabled characters being portrayed by disabled people?

Oh – wait… The Guardian already suggested that.

Only – immediately the comments had virtually NO ONE saying “gee – what a good idea, lets see about having disabled characters portrayed by people with disabilities” – oh no. The comments flared up and the majority have spoken. It would be impossible for disabled people to be portrayed by disabled actors. Because sometimes able-bodied, non-disabled people are just better at acting the part, because disabled people just wouldn’t be able to pull off a performance like Dustin Hoffman, because for most of the biopic on Stephen Hawking the character was able-bodied before his even first symptom of motor-neuron disease, because no one has “the right” to have their lives reflected and “the majority don’t” (except that they do get reflected even if it’s not a ‘right’), and that by calling for this all characters of murderers should be portrayed by genuinely convicted murderers or this means actors who are posh shouldn’t dare play characters on Eastenders, how dare gay actors portray straight characters it’s soooo unrealistic.

Because it’s not like the performance could have been shared between an able-bodied person for the able-bodied part of the story and a disabled person for the parts involving a disability.

Or it’s not like in stories where the character is disabled all the way through could possible be portrayed by a disabled person of similar or same disability. Or that having such a character would be anything other than politically correct tokenism. Heaven forbid that a disabled character exist NOT to teach the non-disabled characters an important life non-lesson.

People have stated that the companies depend upon bankability of the stars that they have which is why you have so many able-bodied people playing disabled characters. Which is a shame. Not only because it’s like the disabled form of blackface – but because there are plenty of disabled actors out there if you looked who could rack up similar bankability if they were given a chance.

Refusing to cast disabled people in disabled roles is like stating a better actor for Tyrion Lannister isn’t Peter Dinklage but Orlando Bloom. Or Elijah Wood because he managed to pull off a hobbit.

It’s ridiculous, ignorant, and over all – short sighted.

Yes – acting is make-believe, but asserting that all non-disabled actors are capable of playing a disabled role better than a disabled person is a fallacy based on incomplete data – you don’t KNOW all disabled actors to know this. When I did performing arts it was a class of 15, which had 4 people in the class with disabilities – One autistic who’d had a hip replacement, me, a 50 year old man with Downes syndrome who loved Elvis and dancing and a girl in a wheelchair with cerebral palsy (who also liked to dance). There were 3 people there for acting, and the rest were a large group of boys interested in becoming MCs and Rappers (which lead to issues whenever we did acting heavy work because they weren’t interested). There are roles out there than any one of us could have played – and played well.

Someone called this “Political Correctness gone mad.” Every month or so you will see one actor or writer or whatever bemoaning political correctness where they’re suddenly not supposed to say offensive things that disparage against one-minority type or another and how people seem to think that by being offended by something other people should care that they’re offended.

I think these people are missing the point. I dislike political correctness that doesn’t actually consult with the people of that minority (in their millions) to reach some sort of consensus first sure, and yes, people have the right through free speech to be offensive – doesn’t stop them being an asshole.

When, in a world that we make and shape to fit us every day, did it stop being as simple as that to include everyone? To include everyone and not complain that it was political correctness that shouldn’t happen? To include everyone and think it’s GOOD to include everyone?

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