Off with Their Heads

Gigs, festivals, disabilities, they don’t mix well. At least not in the Netherlands, where the standard accessibility policy applies to people in a wheelchair and only people in a wheelchair. Now I am all for access for them, make no mistake about that. However, the fact of the matter is that wheelchair users make up about 7% of the disabled people in this country. The 93% rest of us are barely an afterthought. There’s just no policy whatsoever for us. They’ve never given it a second thought. Not a third either.

As a result I am always forced to spend precious time and energy on contacting the people in charge of whatever event I intend to visit to extract the accessibility information I need as a visually disabled person. I don’t even begin to ask them about accessibility for autistic people (which I also am), because by now I am all too aware of the complete state of panic that breaks out when they receive my email. The mere thought of something so alien as a visually disabled person entering their premises is – on average – far too much for their ableist brains to handle. Scuse my French.

Over the course of the last few years venues have told me I would just have to make a run for it when doors opened, so as to stay safely ahead of the crowd (that’s really going to work for a cane user, duh). I have been shouted at by venue staff that I needed to look out better (such a tactful comment to a person that’s going blind). I have been told to bring a person that would take responsibility of me (cause every disabled person needs one, apparently) and that it was perhaps better if I just didn’t come at all, disability and all (charmed, I’m sure).
I have also been at a venue where assistance was promised but where I ended up being trampled by the crowd, Security not intervening at all, no matter how hard I cried for help. I was left injured, my cane damaged and to this day I am severely traumatised by the experience. Zero apologies or compensation offered by the venue.

Starting tomorrow I am setting off for three Kaiser Chiefs gigs in a row. As usual I emailed all the venues. One of them sorted things out very quickly, no problem at all. This was the only non Dutch venue of the three. The non Dutch are so much better at this. Apparently we are actually considered to be people outside these borders!

The (Dutch) venue I am going to on Monday put quite a bit of pressure on me because as far as they were concerned I’d best sit somewhere in a corner, safely kept away from other people. For the record, I only bite back, I don’t initiate any biting, people don’t need to be kept safe from me. Though the venue deserved to have its head bitten off for their reply I kept my cool and managed to sort it out in the end. I think. I will have to see (I get to do that pun) on Monday.

Sunday night’s venue, however… Wow. And I don’t mean good wow. Yet again I was confronted with an ‘able bodied persons one way, disabled persons the other way’ mentality. Like Monday’s venue they wanted me to sit somewhere in a corner, made continuous ableist comments and also decided for me that I could best see from somewhere on the balcony. Because they know better than I do of course. Emails went going back and forth. At one point I received an email that I felt was so hurtful that it left me both furious and close to tears. It very nearly made me decide not to go at all. If it wasn’t for my friends that are also going I would no longer be going, the venue was that horrible.

As things stand now I am to report to the Artists’ Entrance shortly before doors open tomorrow evening. A nameless venue person said in an email they will then escort me in. I am to be separated from my friends at that time, so they cannot keep me safe (as my friends do admirably). It very much remains to be seen where the venue people will then escort me. I rather expect them to dump me in a corner somewhere on the balcony where they want me, rather than in front of the stage where I want to be. Where I need to be, to be able to see whatever I can still see.

Since the venue chose to ignore my request to provide me with a map of the building ahead of time, I have not had a chance to memorise the layout as I normally do. So absolutely no way for me to know how I would get from a balcony back downstairs, let alone how to get to front, to the place I will have queued for for hours by the time doors open tomorrow. At this point I am not even sure if I will go to that side entrance they want me at, as I am not at all convinced by them, their actions speaking so far volumes.

My anxiety is going through the roof because of this, so thanks for that, venue. You certainly ain’t Paradise.




Missing out on a Kaiser Chiefs’ gig…

A couple of days ago I lost out in the contest for tickets for Kaiser Chiefs’ Ziggo Music Session in Amsterdam tomorrow, 27 June. It hit me hard. I’ve loved music for as long as I can remember, and when I first started to lose my sight music only increased in importance to me. For me, an autistic person with an acquired brain injury, sensory input has always been vital. Music makes me happy.

For years Kaiser Chiefs have been my favourite band and I’ve been to see them whenever I could. When you’re a Dutch fan opportunities aren’t nearly as ample as they are for UK fans. I don’t get to see them every week, like some fans do. Once a year was my maximum for a long time. Of course I appreciate ‘my’ gigs all the more for it.

Gigging is always complicated for me. Funding any gig plus travel, me needing an essential companion (someone needs to be willing and able or it’s a no go), having to overcome a lot of physical and mental obstacles. I suffer from anxiety and panic attacks and I’m still having to forcibly stop myself from doing a U turn for every single gig I travel to. I mean, if you thought walking through town was quite scary (pun intended), clearly you haven’t tried getting through a crowd with very little vision remaining, using a white cane nobody pays attention to, trying to avoid yourself getting trampled while crippled by anxiety and constant sensory overload. I swear I’m constantly battling the urge to run and hide. Of course running is not really an option when you’re using a white cane. Yeah sorry, sarcasm happens to be one of my coping mechanisms.

There’s always tomorrow, always another time. How often do people say that? I’m extremely – perhaps even overly – aware that for me most things cannot wait till tomorrow. There are many things I need to do now, before eternal darkness stops me. When the future is so unclear, living in the present is more essential than ever. The Ziggo gig is present. Except I won’t be present.

Ziggo was so very special for me. A small crowd. Bliss. But I didn’t make the cut. I’m absolutely gutted about that. Right now there’s a thorough lack of horizon for the next scheduled Kaiser Chiefs gig I could get to and I’m feeling it. This time last year I still had 0.30 vision remaining, by the end of 2018 it had dropped to 0.15 and spring 2019 took it down to 0.05. There’s not much left to work with, is there?

I’ve taken to very deliberately saying goodbye at the end of every Kaiser Chiefs gig, because I’m very aware that I’ll have been at my last Kaiser Chiefs gig without knowing it, until after it happens. I’ll have a last glance, savouring the moment and trying to record it in the collection of my memories for eternity.

Not wanting to live my life through a lens, I take only about a dozen photos during a gig, randomly pointing my camera towards the stage, not being able to properly see my subjects or the camera display. Upon return home, when I’m finally able to see and check the photos on my big computer monitor, I’m always desperately hoping I’ve actually snapped something decent, so I can retrospectively merge the sound and vision in my head. Waiting for the gift of sound and vision, as David Bowie would say.

I don’t want to sound overly dramatic, but missing out on this Ziggo gig tomorrow afternoon hurts a lot. The thought of it isn’t likely to be buried until the gig date is firmly hidden somewhere among many yesterdays and even then it won’t go quietly. After all, the reality of it is that I get very few opportunities to see Kaiser Chiefs, with very little (if any) time remaining for another chance.

Let’s make one thing clear, that Ziggo Session tomorrow is still in my head. My essential companion Jolien and I were considering to travel to Amsterdam in the off chance we might actually catch a glimpse of the guys.

(Although technically of course it would be Jolien doing the glimpse catching followed by a nudge for me). The question is, would there be a point to doing that?

All I really want is just to be at tomorrow’s Kaiser Chiefs’ gig…

Christmas Sucks (Part 1)

On Christmas Eve J.K. Rowling tweeted this lovely message, which really got to me, as I very much identify with much of what she writes.

I’ve had so many lovely messages wishing me a merry Christmas. Thank you!
I’ve also heard from people who are going through very tough times. These always seem worse at Christmas. At this time of year, we’re bombarded with images of perfect lives, which bear as little relation to reality as tinsel does to gold. If you’re lucky enough to be with the people you love, warm and safe, with enough to eat, I’m sure you feel as blessed as I do. But if your life is currently full of difficulties; if you aren’t where you want to be, either literally or figuratively, remember that extraordinary transformations are possible. Everything changes. Nothing is forever.

Thinking back to my worst Christmas, I found it hard to believe that my unhappiness would pass. I was truly afraid of the future. You never know what the future holds. Astonishing reversals of fortune happen every minute. So if you’re sad, or lonely, or bereaved, or ill, separated from your loved ones or in any other way suffering this Christmas, I send you love and wish you luck and better times. Millions of us have been where you are now. Remember, Christmas Day is, in the end, just a day. It isn’t a test or a scorecard of you or your life, so be kind to yourself

Merry Christmas!

I was in the process of finishing a blog post about this very thing, when Jo tweeted what I was struggling to put into words. In fact, she managed to write about thoughts and feelings that were lingering somewhere at the back of my head, still very much in such a form that I was mostly unaware of them.

I tend to phrase it as ‘I hate Christmas’, because that’s the easiest way to put it. Quickest too. It leads to very few questions although it does seem to increase the number of disapproving looks. Setting aside terminology, Christmas has been becoming more difficult for me over time. For lots of reasons really.

Apart from the ones Jo sums up, I find the whole concept of Christmas very hard to handle as an autistic person. It is disruptive beyond belief and subsequently not only affects my peace of mind, but also my physical health. I love my 7 foot Christmas tree and I love my decorations, each of them handmade by me. And yet…that tree has continuously been living in my basement for several years, as I am unable to handle it being in my living room or anywhere else in the house. It being upstairs instead of downstairs sends me in complete sensory overload. It literally makes me ill. Furniture needs to be shifted around to make room for it, it changes my whole living room and on top of all that, it affects the light in my home. As a visually impaired person I need proper lighting, and having the tree up here strongly influences the light. It’s more than I can bear, unfortunately. So this year – again – my beloved tree and decorations remained in the basement. I’ll try again in 2017.

Just another day in the life of an Aspie

I have been sleeping extremely poorly, but last night I only woke up once. However, even this relatively moderate sleep disruption led me to having to mute my alarm clock three times before I managed to will myself out of my semi comatose state. I get like that when I don’t get enough sleep and my sleep is disrupted late in the night.

However, sleeping in is not an option. Believe me, I have tried. It completely messes with my metabolism, making me only feel worse, so it’s a big no no. Getting up I felt like I had been run over by a truck. I was experiencing a lot of pain all over my body, though my back seemed most affected. I decided to still go ahead to run some errands, which included a walk of well over 5K. Experience has taught me that this would not make me feel worse and sometimes the fresh air will actually improve matters.

Things were better for a while. Upon returning home I had taken painkillers for my back (which by now was killing me). I had also changed into shorts, but some time later I got really cold. Of course it was ‘only’ 26°C. Regulating body temperature is a big problem for me, both cold and heat. Back into socks and trousers it was. I could even have done with a vest. At 26°C!

Later in the afternoon I got a really bad headache. I get them from lack of sleep as well as from sensory overload. More painkillers. Then my eyes started acting up, the ‘perks’ of having a blinding eye disease. Working on the computer became virtually impossible, so I moved to my comfy chair. I tried to read a bit, but unfortunately my body then decided to ache all over so badly that I could no longer sit up straight. Fighting that pain takes a lot of energy, making staying awake quite impossible. I had no other option than to go lie on my bed for some time. I hate doing that during the day, as it usually does more bad than good. In between all this my Irritable Bowel Syndrome (most people with autism suffer from bowel problems) had been acting up and definitely the lactose intolerance as well. Aching insides didn’t help things.

Many autistic people do not get a signal from their body when they’re hungry or thirsty. My body only gives out those signals once in a while, so I have to live by the clock. I manage to do so with my meals quite nicely, but I regularly mess up my fluid intake. So I had to get up again, to cook dinner. No, I wasn’t feeling hungry, but I rarely do. Listening to one’s body might be something a person without autism is able to do, but I certainly am not. If my body speaks at all (and I doubt it does), it does so in a language my head does not understand.

Now, mid evening, I’m sitting here wondering what else my body has planned for today. My willpower and stubbornness dragged me back to the computer. If it wasn’t for them I’d never get anything done.

What you cannot see

A little over ten years ago I started to experience vision problems. I didn’t think much of it, as both my contact lenses and my glasses were long overdue for renewal. I thought I just needed to replace them with a new prescription. Apart from the blurry vision in general I saw a lot of spots, but I thought those were due to dirty lenses and/or dirty glasses. And when I checked them they were dirty, so nothing to alarm me. I had a significant problem with light coming from a particular angle on the left hand side, I could hardly see a thing. However, when the light was (re)moved, my sight improved, so obviously the problem was with the light and not with the eyes, right?

Even now I don’t feel I was continuously reasoning away problems I knew were there. I genuinely did not know there was an actual problem with my eyes. I moved house, the light in my new living room came from the right hand side, but my eye problems remained. At around the same time I got both new contact lenses and new glasses and yet the eye problems remained. After that it did not take me long to go see my GP about my eyes. Like I said, I never wanted to avoid a problem, I just didn’t know there was an eye problem.

After seeing the GP things sped up, for even he could see (without any fancy equipment) that at least one of my retinas was detached. I got an emergency referral for a specialist and the rollercoaster ride commenced. Even with all the fancy equipment it took the specialists at the Eye Hospital considerable time to get me a diagnosis beyond the preliminary one (i.e. detached retina). The eventual verdict – and I’ll give you the simplified version – was that my eyes are dying off. There is nothing that can be done about that other than monitoring the decay and on top of that the specialists have concluded that there’s something else wrong with my eyes on top of ‘just’ this, although they still haven’t determined what exactly.

Long story short: my vision is deteriorating. Fast. I have not been able to read with my left eye for years and my right eye isn’t to write home about either. I have significant blind spots in my field of view and just for the ‘fun’ of it my brain will attach the parts that I do see, as if nothing is missing. I have banged into something that was simply missing from my field of view numerous times. The quality of my vision is unpredictable as I will see better one day than the next. Without warning the eyes will decide they’ve had enough and stop functioning for various periods of time. Never a warning and never clarity about how long such an episode will last this time around. And the ‘best’ part of it all (not!) is that of course the dying off of my eyes is a far from pain free process.

And so it began…

I’ve never fitted in. Not really anyway. My whole life I have felt like the odd one out. Even in kindergarten I knew the other kids were different, or rather: I was different. Not that I thought that they were all the same, I certainly don’t remember it that way, but if according to George Orwell some are more equal than others, I was definitely more different than others.

It’s hard to completely describe what that realisation does to a child. I know I never felt good enough, partly because of me being different and partly because I was made to feel not good enough. Such experiences have a lasting impact.

On my continued search for the reason why I never fitted in anywhere I did a lot of reading, because that is what I do, that is my safety net. With zero humans to turn to, books were all I had. Books were safe, books were honest, books were there for me.

I discarded lots of possible why’s during my quest. I won’t go over them all, I probably wouldn’t be able to remember them all anyway. One that definitely stood out for me was ‘gifted’, in the sense of intellectual giftedness. I found myself very much identifying with the stories of those interviewed in some books I read on the topic.

I decided to take a Mensa test, which to me really was the only way I knew to have my IQ tested. The actual Mensa membership was never something I was seeking, all I wanted to know was why I was so different, where my utter inability to connect with people stemmed from. Taking the Mensa test was just a means to an end.

My IQ results would definitely had let me ‘into’ Mensa, had that ever been something I wanted to do. For a while I truly believed that I had my answer, and I can’t say I took it very well when it started to dawn on me that I had not, after all, finished my search for answers.

It eventually took many more years and a diagnosis of a close relative for me to return to a previously discarded possibility. Discarded, not because I was not open to the idea, but simply because the then current description of my eventual diagnosis did not fit me at all. The ridiculous assumptions that came with said diagnosis like ‘no feelings’ and ‘no emotions’ cost me many extra years of searching.

I was eventually very fortunate to end up on the right trail at the same time when several new books were published. Books about women with autism, women with Asperger’s. Books written by people that knew how unjust those assumptions that led me to previously discard autism as the reason that made me different really were. Books with stories that ‘clicked’.

And thus, my journey as a woman diagnosed with Asperger’s began. These blog posts are my musings about past, present and future.