Through The Looking Glass

To look at me, you honestly would not think I am disabled. Genuinely. Except when the bags of my eyes resemble designer luggage and I look like I am about to drop/burst into tears/collapse, I look completely normal.

I'll deal with this in two parts, or we will be here all bloody day.

Just to give people the cliff notes I have been variously diagnosed with:
Asthma
Severe Clinical Depression and Anxiety (it's actually called Major Depressive Disorder. That's when it doesn't exhibit any, more serious pathologies but can have a massive impact on your life)
Hypermobility (which may or may not be Ehlers Danlos Syndrome. Jury is out, but GP thinks it probably is)
Arthritis and Chronic Pain Syndrome
Skin hypersensitivity (which is no bloody fun) and eczema.
Allergies. Seriously. The world's most bizarre ones.
And.... Asperger's.

PART 1 - ASTHMA TO HYPERMOBILITY

The asthma is a family thing. In fact most of what is wrong with me is genetically based. I have asthma, my sisters have asthma. So far it hasn't shown up in the next generation, but hey. Mine developed at age 18. Life is not fair. I've had less than a dozen serious episodes, but believe me they were not fun. Becoming confused due to hypoxia and then enduring days of foul-tasting steroids is not my idea of fun.

The Depression. Diagnosed at 19, evident from my teens. I've been mediated for most of the last two decades. Barrel of laughs it is not. Medications I have been on have included SSRIs, the unholy hell that is tricyclics (I became nearly psychotic on them), antipsychotics to knock me out, benzodiazepines for Anxiety. The illness has caused me both to lose dramatic amounts of weight and the resultant meds put it on. My metabolism has been shot to pieces for most of the last 20 years. So I gain weight easily and struggle to get it off. I am mostly well, but I tend to relapse in one shape or form about once every two to four years. I'm pretty good about recognising the alarm bells (tearfulness, insomnia worse than usual, change in eating habits...), but often I will still crash. It can come after stress, but mostly can come completely out of nowhere. When people refer to it as a black dog, it's with me all the time, mostly in the form of a small dog I can control. Then it gets to the size of an Newfoundland and drags me along behind it, squashing me underneath.

Hypermobility: basically I have a fault in one of the proteins that make up the body's connective tissue. What this means is my joints are hyper flexible, as it affects my ligaments and tendons. I scar really easily. Two colonoscopies have shown I have very long and tortuous colon - meaning it moves about and I also have a reverse loop in my sigmoid colon. One too many twists and it is not funny. Now this isn't supposed to happen, but is linked with a condition called Ehlers Danlos Syndrome - another in the family of connective tissue disorders, with varying forms and degrees of severity. What I can tell you is that I can hyperextend and dislocate in my sleep. I can walk down the street and my ankles can give way. I can move normally and all of a sudden I put my neck out. It's responsible for my mild scoliosis and why I am not allowed to work my legs on fixed weight machines, because I hyperextend my legs. Impact sport is also banned for the same reason. I can bend backwards to 90 degrees and do things with my shoulders that make people nauseous. One plus is that my joints bounce back a bit like shock absorbers. The down side is that if I then damage the joint (or area) adhesions can form on the joint and that is excruciatingly painful. If you don't believe me, try not getting the right treatment for SIX MONTHS, because your shoulder wasn't behaving like it was frozen. I have custom orthotics, because otherwise I would fall over frequently.i own my own stick and crutches, because I have sustained grade two tears of ankle ligaments more times than I can remember. I spent most of my childhood with knees covered with Elastoplast to the point I am now allergic to the adhesive. So much fun. Really.  Not. I've seen some of the symptoms in other members of my family, with degrees of it causing issues. Thanks, family genetics!

By now you're probably thinking that this is all a bit much. Yeah, it is. But stay tuned for part 2! Coming soon to a blog post by a whinging spinster...

Bigotry and Other Discrimination

I was reading a comment thread on Facebook the other day and the original post - about whether it is sexist for a woman to suggest that a man has fewer considerations than a woman when going for a job - is sexist or not.

Now initially reading that post, I was all like "no, it isn't sexist" but then I got to thinking and reflecting on how I think about certain things and also some events in the past, right down to language I use.

One of my favourite terms is, when talking to people I know about their male partners, is "He's a man". Normally, this is during conversations about issues or things that have come up.  This is my way of saying that women and men, whether it's societal conditioning or actual DNA and/or neurological wiring specific to the complex nature of hormones and how they act (read up on testosterone studies in people undergoing gender transition: fascinating stuff) on people I could not tell you, but in cases I am familiar with, the XX and XY communities can act differently to specific situations. This is a sweeping generalisation, I know: i know deeply sensitive men and also quite brusque women. In a lot of cases, there can be something else (like autism) going on.  I don't think it's actually down to gender in most cases: I think it's down to wiring and whether someone is allowing logic or emotions to motivate their actions or thoughts. I mean, when I am in a citation myself and it affects me, there's my emotions, running wild. Looking in from the outside, more critically, it is invariable logic defining my responses and I know some people find me pretty cold on occasion. Note: I am not a hugger as a general rule.  Maybe I should use "ah, it's the logic versus emotion centres again", just to be specific and not offend some people. I don't know. Who knows?

I have also been accused, in the past, of being racist. People who know me are pretty incredulous about this. My step-mother is black. She's six years older than me and we do not get along. She was raised mostly in Uganda and then met my dad in Lesotho. She actually grew up during the more terrifying years of Idi Amin's regime, but that's another story (and not mine). Her cultural experience is completely different to mine and she had a degree of expectations about her husband's children's and the role she would play within the family. Obviously, being raised in the U.K., in a totally different environment and social structure, her husband's kids had different ideas. I was absolutely clear that I would respect her as my Dad's wife and would ahve preferred it if we had a more
big sister/friend type relationship. To be fair. I had a pretty awful relationship with my mother and I really didn't want another one. I should also explain that my dad's previous girlfriends and I I had got along brilliantly and I would have loved it if they had become my step mother, because I really feel that they both understood me, liked me and respected me and, in their own way, cared for me. I could certainly talk to them about anything and I found that really important. Not so my stepmother.

Without going into more incidents that happened, the key issues here are that it's not the cultural difference causing the problems in our relationship, it's that there was absolutely no communication about the expectations of the roles we wanted the other to play in our lives. There was also a total lack of explanation about cultural differences and - this is the key thing - a distinct lack of willingness to compromise on one particular side. By the way, this wasn't me. I did try to make an effort to understand the different background and customs of her upbringing, however I didn't get that back. There was no "what do you think", it was all "I am your stepmother, you are my daughter and this is how it will be". I might add, that this goes completely against how both my parents brought me up. But that, again, is another story. So we mostly clashed. I don't have a lot to do with her now: when my dad died, they had separated and I don't agree with some of the things she has done. However it is her life. Here's the thing: she was married to my dad, but I don't have to like her. That's my choice. I don't talk about the relationship between us to my three years ingest siblings, because she's their mum and I think that's fair. I know how they feel on this. But yes, I digress. When I explained I didn't get on with my stepmother to someone, initially there was empathy and sympathy for this: the second I mentioned she was black, I was branded a racist. Nothing about the fact that we just do not get on: as far as this person was concerned, they decided it was because of the colour difference, I was exhibiting white privilege on this and was therefore a racist (dude, wtf?). I still don't get it either, but that is how some people perceive this.

I have also been branded homophobic. Why? Because I called a grown man, having a temper tantrum in the street a drama queen and told him to calm down. I'd run into him, we'd done the whole fake kiss-hug thing and then I'd expressed how sorry I was to have heard something about him. The fact was, whoever told me what they did about him shouldn't have said it, so I should have expected the anger. That's on me. But to brand me homophobic and try and get me banned from all of the gay establishments in my town as a result? A bit too much. Actually, the end of that story, which included  show down in a public bar, involved said guy's partner telling him he was, in fact, a drama queen and that I certainly wasn't homophobic in the slightest. Perhaps you disagree.

I will say that I don't understand difference. One of the benefits of being on the spectrum is I just cannot understand how people have bias to what they or who they don't know or understand. Different faiths don't bother me, different colour of skin does not bother me, who someone chooses to love does not bother me. The identity they choose to express, at any time, does not bother me. Certainly, what they do behind a closed bedroom door or safe, consenting environment is absolutely none of my business and I think everyone deserves to be equal and respected and their rights protected.

What affects my personal judgment is how people behave to me and to other people: to be fair, if you hit me, bully me, try and feel me up in the street, spread gossip about me behind my back - it is going to affect my feeling about that person and, initially, possibly anyone who might look like them. I tend to call a spade a spade, because that's how I see it. Like the time I offended someone by telling them of a store to get a dress for a function, which is where I was going to shop; they got offended because they thought I was calling them fat. I wasn't, but that's how they took it. If you're nice to me but act like an asshole to someone else because of their faith, colour, etc, don't expect me to back you up. But you don't have to like everyone and certainly not just because of appearance, etc. Explanations are useful and exploring why you feel the way you do is important: people getting an automatic pass? No.

So on reflection, what I think I have learnt from all this is that:
Some people will be offended by the word you use, even if there's no nasty intent.
Some people take the whole PC thing a bit far, in my opinion. Some words are just words.
Perceived meaning can be completely different from the intended meaning
People can be influenced by others and events earlier in their Ives. I know I am.

I am not perfect, but what really got me on that thread? Someone saying it should not be allowed. Actually, the discussion was thought provoking in a good way. Certainly, the female role is seen as being the one where more care is expected as a general rule in society, from care of the elderly, to children and anyone in that role may be more cautious in their decision making processes. However, sometimes we should be willing to take the risk. We certainly need to sometimes.

In conclusion: I call a spade a spade and sometimes I offend people, because I am gob before brain. If I know I hurt someone, I apologise. If I think they're taking it too far, I call them on it. I have an aspie brain *shrugs shoulders*.

London is falling....

I feel compelled to write about the tragedy at Grenfell Tower in West London today.

For those of you who don't know, there was a massive fire at a high rise, mainly social housing, in the leafy and wealthy Kensington and Chelsea area of West London. A fire took hold and the entire block went up like the Towering Inferno.  This is no exaggeration.

What has come to light since then is:
1) That the housing association managing the property for the borough had had numerous concerns raised about this very building from the Grenfell Action Group. Nothing was done, mainly in relation to the (lack of) sprinkler systems, the alarm systems and also the confusing messages relating to evacuation (or not).
2) That it was recently refurbished, with exterior cladding that had been linked to several fires in similar buildings in other nations. This cladding is reputedly banned in other nations. There are two kinds of insulation-improving cladding, one of which is more flammable (read: cheaper) than the other. Guess which one the refurbishment contractors have confessed to using? Yup. Not the more expensive one.
3) London Fire Brigade had issues (at least) two enforcement notices on other properties managed by the same group for failings, after investigations.

What happened here was absolutely tragic. The local residents of the community, already feeling under pressure and living in an area where off-shore companies own (and leave vacant) a lot of properties, there is a lack of social housing. They're angry because they feel their community is threatened, because their concerns were not listened to. Primarily they are angry, shocked and grieving at the loss of friends, loved ones, family members.

What's worrying is the apparent lack of generalised standards when it comes to evacuation equipment and no, our fire brigades don't seem to be equipped with those large, inflatable drop zones other nations have. In this situation, however, with pieces of falling, burning cladding dropping, I don't know if they would have helped.  One thing is for sure, someone has to review the safety arrangements in all buildings of this kind. There needs to be more than one escape route. There have to be fire-proof refuges built in. Seriously. And someone needs to look into these inflatable drop zones to use in situations where the fire brigade may not be able to get high enough, if they don't already have them. (That said, I imagine burning debris dropping and damaging them would make them about useless, which is possibly why they are not normally seen). Someone needs to do something about this, even if they won't actually legislate for landlord responsibility to provide safe and habitable properties (oh yes, that's a thing too).

In case you're wondering about all my facts, they're all from various U.K. Papers, like the Independent, Guardian, Telegraph.

But here's another thing: while Jeremy Corbyn and the Queen - yes, the QUEEN - have visited residents, Theresa May has been lagging behind a bit. She did make a private visit to the emergency services on site, sans media you understand, but did not meet with residents. The other two did. I am sure you can imagine the response today when she did finally make a visit - from the video on the Independent website, it was a very swift exit by a side door with the police holding back some very angry local people.

The media haven't been getting a good time of it either: as Jon Snow, veteran Channel 4 Newsreader found out, the locals are incandescent with rage about the fact that the media has ignored the complaints and concerns of local people about just this possibity for years, only turning up when someone has finally died. They're right, that's shocking. Turning on one man, who isn't responsible, probably isn't fair, but then again, people are upset and angry; they are grieving. And good man that Snow (Channel 4, not The Wall people), he stood his ground on this one and let them speak. Unlike May, who pulled away in what looked to be an SUV with blacked out windows.

I have also been completely appalled at the actions of some of the other "newspapers" (my late father used to refer to them as the "Gutter Press": whether or not I concur with his assessment is my own business, but I will say I have had "experience" of dealing with one of their "journalists" and it was less than pleasant). From posing as the friend of a victim to gain access to those injured in this tragedy (nope, not kidding) to apportioning blame to someone for starting the fire (1 - not the bigger issue here; the place should NEVER have gone up like that and 2 - hounding the poor guy and asking him continually if he started the fire? No, not cool to target someone who is a victim of a truly appalling incident. I'd like to think his name (possibly not UK origin) has nothing to do with it, but hey, some of these papers REALLY don't Iike immigrants etc). Never mind the investigation hasn't even been completed yet.

And yet the outpouring of support has been incredible: churches, mosques all opening their doors to help shelter and feed people. Thousands of people from all over the city showing up to volunteer, to donate clothes, toys, whatever they can. People of all colours, creeds and persuasions coming together, helping each other out. That's amazing. They have run out of space for donations, so generous have people been. A student accommodation building manager is opening the doors of their empty studios on a temporary basis, to get people out of church halls and leisure centres. They have somehow managed to find bedding, sheets and towels for each one, because normally students supply their own. Other agencies, ordinary people, have also volunteered space too.

But that's not a permanent solution: these people need permanent homes, in their communities. Action has to be taken, legislation written and passed to make sure that this can never happen again and that proper measures are taken in these buildings in case fire ever breaks out again, so people don't die. Although I rarely agree with Corbyn on anything, I agree in that if there are properties being left intentionally vacant in the area, they should be publicly requisitioned to rehouse these people. The end.

Anyway, I intended to post about autism today, but I'm off track. Rant over.

Life, or something slightly like it

I have retaken to blogging! Seriously, this might just be the thing that actually helps along with my recovery.

My forties were supposed to be fabulous. *I* was supposed to be fabulous. My career was supposed to work out in whatever way it was and I was meant to get on better with life.

As per usual for me, sh*t isn't working out like that. Again.

I've been bullied most of my life. While this makes some people more resilient and resistant to it, I wasn't so lucky. Combine this with a fairly ghastly childhood and more recently diagnosed and even I wonder how on earth I am still standing, living a more-or-less independent, active life.  I've been bullied at home, at school and in the workplace. I've been bullied by people who should know better. I've been sat there as others in more senior positions have watched it happening. A lot of the time this has been disability related and it's been senior people doing it.

Last year, I was finally diagnosed with an autistic spectrum disorder at the age of 40. Yes, I am one of those many, many other women of my age who has finally been diagnosed, so yes, I am adding to the large number of blogs on this subject and life around it. So you can sigh and roll your eyes about that. I actually don't care. In actual fact, I give precisely zero f*cks. We all have valid experiences to air and almost all of us have experienced issues that you NTs (Neuro Typical peeps) just don't get.

Our lives tend to be a bundle of stressors that we have to continually expend energy on trying to mitigate. And it's normal crap, in a lot of cases. From noise levels, to specific lighting, to the right seat, to even getting the bus to work in the morning. Right down to speaking to people (I prefer the medium of the written word). And trying to appear vaguely normal. We female Aspies in particular are good at mimicking behaviour and acting (seriously - you should see me when I put my professional hats on. You'd never guess I had any issues at all. It's all in the acting) all of which takes up energy. It is exhausting trying to behave normally enough for some people and I have little quirks of behaviour that I do more often than not, especially when stressed out.

Then there's the ongoing battle of how we recognise stress. A lot of my community cannot do this effectively. It's almost like we are so attuned to having to manage the additional stresses on top of, say running a house or a job, that we don't notice it effectively until crunch point is met. We are the frogs put in the pan of cold water that is slowly heated to boiling point: only when it becomes near impossible to cope anymore do we recognise it and, usually, a crash comes with it.  My case is slightly more extreme: I not only fail to recognise stress and manage to act my way through life, I also have the added value of associated conditions, all of which are exacerbated by stress. I really should volunteer for monitoring of the effects of stress on the human body. Seriously. Just when I thought I was clear of one of my MH (mental health) blips, I had a recurrence of migraines and chronic pain syndrome.

It's at this point you honestly wonder when your body is actually going to STOP TAKING THE PISS.

This week has also been a blinder of disappointments: I didn't get an interview for a really good job (and am left wondering what on earth this minimum standard is for disabled people to get an interview, I really am). A cake I made for free as a raffle prize, despite my not being professional cake artist, was rejected for not being "fancy" enough. (It was a Frozen themed cake for a 5 year old. Inside it had tinted sponge layers of Anna and Elsa's dresses and was covered in silver, glitter covered snowflakes and a light coating of pale blue, glitter-tinted gel. How fancy does a cake for a 5 year old need to be? I bought toppers for the thing, in case the theme wasn't obvious enough).

Seriously, universe? I'd like a f*cking break please. And some assistance with blinging the sh*t out of this blog would also be AWESOME! Please help your local, not-so-friendly Aspies in her 40s?