Haven’t got time for the pain

crane surrounded by cement construction blocks
I can pick from any experience I want to have. I’ve got things to do. I choose to experience strength and capability and accomplishment.

I’m in a fair amount of general discomfort this morning. If I move just right/wrong, I’m in pain. Autumn cleanup time is here, and I’ve also had a very busy bunch of weeks, which has put me off my schedule and pushed me more. So, yeah. Pain.

In other ways, I’m feeling a bit of pain, as well. Emotionally, psychologically, socially, my life is pretty painful. And it’s gotten to me, over the past weeks. Autumn is often a hard season for me, because so many things are dying. Also, people die. And things change. And the holidays are coming up, which means even more pain.

What to do?

There’s no way I can deny the pain that exists. But I’ve decided that that isn’t going to be my main point of focus. As a matter of fact, I’ve developed a formidable ability to hyperfocus on things of my choosing — and that hyperfocus blocks everything else out.

Including the pain.

So, that’s my choice. That’s my chosen direction. To hyperfocus on things that interest me, things that fascinate me, things that really give me joy and motivation, rather than getting stuck in the pain.

The pain will always be there. I’m not discounting it, not devaluing it. I just can’t let it wreck my life, when I have a perfectly good capability at hand, which allows me to keep functional, despite the pain.

A friend of mine insists that people need to accept and come to terms with their pain, in order to be healthy and happy. I have to understand and make peace with the ways I’m disabled, to fully honor my humanity. I agree. And I have come to terms with my pain. I know my intermittent, invisible disability all too well. I’ve been on close working terms with it all, my entire life. I’m just not a one-dimensional person who only experiences pain and disability, and makes that the center of their life.

I do not want pain to define me.

I do not want disability to define me.

I do not want to center my life around a narrative of less-than status and capabilities.

I’m just not going there.

Because I don’t need to.

I’ll never tell another person how they should relate to their pain and disability. That’s their business. That’s their path.

For me, I can’t do it.  I need to be fully involved in the world I live in, and that means putting the emphasis on my strengths rather than my weakness. That means strengthening the places where I’m strong, not dwelling on the places where I’m weak. I know about the weak places. They remind me, every single day.

But I can’t live in a world where they’re the only thing that matters.

I feel like crap today. My balance is off. My stomach is churning. I’m lightheaded, and I feel like I’m going to fall over, if I stop moving.

So, I keep moving. Ironically, the more I’m in motion, the better my vestibular sense is. Thus, I’m keeping in motion. Till I’m not. Then I sit and hang onto something, so I don’t fall over and get hurt. Then I gather myself and get back into it.

That’s what works for me. Nobody is obligated to agree with me or try to match me or tell me my approach is good or bad. Everybody finds their own way.

For now — and the foreseeable future — my choice is to recognize what’s wrong, but leave that in the background.

From Alex Plank – This is the Most Important Election of My Life Because I’m Autistic

Just got this in my email – from Alex Plank of WrongPlanet

Many people are calling this the most important election of our lives. That’s certainly true for me because I’m autistic. This is the first election in the history of the United States where disability rights and autism are playing a central role. This is the first election where individuals with disabilities have been in the spotlight at a convention. This is the first election where a candidate has focused on disability in a convention speech. Unfortunately, this is also the first election where a candidate has mocked those of us with disabilities. Putting aside my personal politics, I would find it hard to vote for a candidate who did not support disability rights and have a plan for individuals on the autism spectrum.

Read the full article here: This is the Most Important Election of My Life Because I’m Autistic

My disadvantage is … different

trees down on a road after a storm
I may be temporarily blocked, but I can still climb over obstacles and go on my way

Austin Shinn has another nice post about The Problem of Privilege. And I wanted to chime in, as well.

I’ve been thinking about this a lot – especially lately, in light of my complexifying relationship to autism. Do I call myself “disabled”? Do I accept it as a condition that limits me? Why am I so reluctant to just adjust to that, and integrate that as part of my experience and identity? I’m deeply ambivalent.

I think part of it has to do with how I’m not permanently disabled by autism. My Aspie life is more akin to running a marathon on a bad day, and a 10K minimum on a good day. It makes things more challenging for me. It saps my energy. And many times I feel like I’m wobbling around after a mile-long sprint up a very steep hill. But it passes. I do have enduring executive function issues. But I know how to fix them. I’m working on them — as well as the rest of my life.

I guess I feel like calling myself “disabled” does a disservice to folks who truly are struggling with many, many aspects of their lives on a regular basis. I know I’m not supposed to compare myself to others, but when I do, I come out looking not at all disabled. I mean, seriously, if I just take good care of myself and get enough sleep and eat right and keep exercising, use my supports, and learn as I go, I can have a great life. I in fact do have a great life.

That’s not to say that I don’t have issues which are temporarily disabling. I have huge problems with communication, at times, and meltdowns (while rare, nowadays) are a force I need to reckon with. I don’t get jokes. I have trouble figuring out when to talk on the phone. I hate the phone, period. And some days, the best I can do is just muddle through… or go back to bed and rest till I’m functional again. I am at increased risk of exploitation, because I can be so trusting and naive and mis-read social cues. I’m sure I have over-paid for just about everything I’ve ever bought, because the thought of negotiating never occurs to me in the moment. I’ve really had a terrible time, in the past, and I’ve had to work through a whopping case of PTSD as a result of the “excitement” and “adventures” of my youth.

Autism for me can be disabling at times. It has brought me up short many, many times. But am I disabled? I wouldn’t say that — in fairness to people who truly are.

I’m one of the few people I know who actually understates their difficulties. Most people I know have an “enhanced” view of their own struggles — even the folks who appear to have the most advantage, the most skills, the most money, of the population.  And it makes me wonder about the nature of our difficulties, and how we see ourselves as advantaged, disadvantaged, privileged, oppressed. I can’t speak for anyone who’s not in my demographic … so that limits how much I can responsibly say. But I’ll say what I can, because I think it’s important to consider — especially when we talk about privilege, disability, and the assumptions we make about How The World Is.

There’s all kinds of talk going on about white privilege these days, which is refreshing to me. On the other hand, I know a lot of white folks who absolutely bristle at the idea that they are any more privileged than others. The very suggestion really offends them. Even though it seems quite obvious to me, they take deep (and sometimes incensed) exception to the very idea that they have an advantage in life.

After all, they have difficulties. Their lives are not a cakewalk. They really struggle with certain things, and I don’t doubt they experience a great deal of pain as a result. I think what obscures our vision, sometimes, is that our difficulties may make it seem as though we’re not favored or advantaged (privileged) in the ways we most long for. We wish we could get special dispensation from the world, but things are tough all around, and we don’t see any evidence of that being the case.

So, we can think of ourselves as struggling in significant ways without a safety net, when in fact we do have a lot of privilege to fall back on. In my case, I’m a queer woman who’s been intermittently disabled over the years, working hard to make ends meet without a college degree to back me up. I’ve been broke, I’ve been well-off. Now I’m just barely above the “broke”line again. So, that’s not always easy. It makes me vulnerable. But my vulnerability is very, very different from others’.

Case in point: I was technically homeless in the winter of 1990. I walked out of a bad relationship with a duffel bag of clothes and the friendship of one person I could rely on. I was walking around the snowy streets of a major city (in a fairly drug-infested neighborhood), looking for a doorway to sleep in, in case my one contact couldn’t help me. I got lucky. They were home, so I didn’t have to spend the night in a doorway. I was officially homeless for a few weeks, while I looked for my own place. Had that one friend kicked me out, I would have been looking for another doorway.

The thing is, my homelessness was very, very different from that of a Black woman whom I and some friends helped to a shelter, where she was going with her three young daughters. She was apparently leaving a bad situation at home, as well — and it seemed to me that she’d hung in there as long as she could, for the sake of her kids. No, she did not want to talk about it. At all. It seemed clear that she had to go to a shelter, because of her situation. She couldn’t just take her little girls with her out onto the street. God only knows what became of her family. I, on the other hand, was able to pick up and leave a bad situation, just a month or two later, with a sense of elation and hope, not dread and desperation.

My situation was a passing inconvenience, and I knew that because I was a young white, middle-class woman who nobody guessed was gay, I could expect special consideration from others — especially from white men middle-class men who may have seen me as a potential partner. Not that I was taking advantage of that, but I was always so very aware that my homelessness and my difficulties were temporary hardships, at best, which others (white others) would jump at helping me solve. I got my divorce for free, because I worked at a law firm. I got a few pieces of furniture for very cheap, because someone at work told me about a going-out-of-business sale that was happening elsewhere in the office building. I could fall back on an informal network of white folks who looked out for each other (especially attractive young white women), and get the support I needed. I used that network to find a room for rent in a nice house in a safe (white) neighborhood. And I could walk around late at night without too much concern, because young white women especially were protected in that area by men and elderly women who kept a watchful eye.

This is why I am reluctant to call myself disabled or disadvantaged — because beneath the surface, there are forces which look out for “their own” and mitigate the impact. And those forces tend to favor people who look like me. That’s something that precious, precious few white folks are aware of. It’s not that we all have it easy and cushy and whatnot — there is just a whole lot more that we can take for granted… and often never suspect that others can’t.

I can also take for granted that, even if I’m wearing very thin and am having trouble balancing, tolerating light and sound and touch, can’t make myself clear (or can’t even talk at the moment), and I can’t understand what anyone is saying to me… if I just take care of myself, rest up, and use my tools, I can restore my functionality to acceptable levels. I am not permanently knocked out of the perpetual competition that can be life. I just usually feel like I’ve just run a 10K; I’m wobbly, sore, weary, and I don’t have a ton of energy to spare on fruitless pursuits.

My disadvantage is far more of a difference, than it is for many, many people. And while my situation may be intermittently disabling, the last thing I want to do, is compromise their position because I’m showing up calling myself “disabled“, when I can clearly take so much for granted, than they ever could.

Rising to the challenge of Neurotribes

network world neurotribe
It’s all connected, even if it seems like it’s not.

Never let it be said that the autistic community is one-dimensional and bland. We are anything but. We’re all over our spectrum, with a whole lot of passion behind our beliefs and opinions. Our points of view have been shaped by so much experience — and a lot of pain — with an intensity that I’m sure lots of non-autistic folks find daunting.

Recently, Austin Shinn posted a piece called “The Silberman Issue“, which raised concerns about a non-autistic individual becoming a sort of “spokesperson” for the autistic population. Austin says it better than I can paraphrase:

Steve Silberman has become a very serious problem for autistic people. He’s become the de facto voice for the autistic community when he is not a member of it. He has become the person the media cites as the expert on the subject, crowding our own voices out of the conversation. And I can’t lie: I feel he’s at fault in this as much as the media.

Silberman can’t be faulted for trying to sell his book, to be clear. Yes, of course he’s got every right to do so. His book is on autism. I expect him to talk about it nonstop. I talk about my own book a lot after all. I realize that he is trying to make his living.

But early on, the idea that he was a voice for us solidified in the media. I’ve read a number of stories that promote his book as if it’s the definitive tome on our lives. It gets frustrating to see articles treating him as the expert on our lives. It’s something I’ve seen constantly since the book came out and I truly think it’s getting worse.

I have to say, I agree to some degree with this point of view. I also agree with the commenters at the blog post, that we do need allies, and we do need non-autistic folks who are deeply sympathetic to our situation. I also appreciate Silberman’s response to Austin’s piece, where he relates that he’s “been trying for a long time now to do something much more subversive than ‘name drop’ autistic writers”. He goes on to give concrete examples of how he’s doing exactly what Austin’s piece seems to ask for — yielding the floor to #ActuallyAutistic individuals to speak for themselves.

I really appreciate that. It’s incredibly important that those in a position to signal boost us, actually do it. And quite frankly, Silberman can do that because of his widely perceived expertise in the history of autism and his long-time consideration of it. He is in fact using his influence and position for some good, regardless of how often and to what extent we may believe he is.

I don’t doubt that Steve Silberman is a powerful and influential ally, and I don’t doubt that he’s taking some important actions to promote understanding about autism and our culture. I also don’t doubt that many neurotypical folks are far more comfortable talking to and interacting with (and believing) someone like them. People look for individuals they can relate to, especially when it comes to a subject as charged as autism. I’ll defer commenting on the problematic source(s) and nature of that “charge” — it’s a rabbit hole I’m not going down, right now. Maybe later.

Tweet: People look for individuals they can relate to, especially when it comes to a subject as charged as #autism.Tweet this: People look for individuals they can relate to, especially when it comes to a subject as charged as #autism.

 

Anyway, yes, we sorely need competent, sympathetic, and relatable “translators” to bridge the gaps between the autistic and non-autistic world. And Silberman has shown himself to be all of those things — and more. The public perception of autism is (‘scuse my language) a shitshow, and while things are changing, it’s happening very, very slowly. Media still love to run stories about how awful having an autistic child can be. Rolling Stone ran a story a little while back, along with the San Diego Union-Tribune. No, I’m not linking to them. Believe me, they’re not a good use of time.

And yes, it’s incredibly refreshing to hear a public figure teaching the world that autism is a difference, as well as a disability, and that many an autistic individual has contributed to the greater good. I think that’s actually an understatement. That internet thing? You’re welcome, world. It’s been our pleasure to build it for you, although you’re not doing such a hot job of using the powers for good, instead of evil. It’s wonderful to hear someone in the mainstream talking about us like regular human beings with so much to offer, as well as certain difficulties.

But yet…

Where are the autistic voices? Where are the books by us, about us, describing our world in accurate detail to the mainstream / non-autistic population? Where’s the heavy-duty promotion of our writing, which is prolific and often insightful? Where’s the autistic presence in the major booklists? Yes, books about us by non-autistic authors (including fictional accounts — that book about the autistic boy and the dead dog) are widely read and positively reviewed and make it onto the bestseller lists. Movies are made about us by large studios, and they have been known to rake in some dough. But where’s our own presence in the mainstream media and publishing scene?

Where are we, indeed?

I think our relative invisibility and need for representational proxies has a number of contributing causes, and not all of them are the fault of the non-autistic world. There are many, many different aspects to this, including systemic injustices, inequities in education, earnings, healthcare, etc. which hold us back. But are we doing everything in our power to turn the situation around — for / by ourselves?

I’m not so sure. Here are some points I think we could address, ourselves:

  1. We’re not well-known. Yes, many allistic people have a skewed idea of how we are and what we’re capable of, which makes autistic culture less attractive or “consumable”.  And we tend to suffer under that. Our invisibility makes it easier for non-autistic folks to jump to conclusions about us, based on widely promoted images that serve the intere$ts of fund-raising organizations. Thing is, we curse the darkness an awful lot, gnashing our teeth about our marginalization, while not lighting a lot of candles and stepping out of the shadows. Of course, disclosing your autism to the world can be a tricky, tricky business. I’m one of the folks who stays behind the scenes, due to the social bias / job-related risks associated with disclosure. I have told a very small number of people I know that I’m on the spectrum (and most of them don’t believe me, because I don’t “act autistic”). Most of my autism-friendly interactions happen online, well out of sight of the public eye. So, I’m certainly not helping matters, by keeping quiet and not helping others broaden their view of “what autistic means”.
  2. We don’t self-promote effectively. I’m not just talking about individual self-promotion. I’m talking about intra-cultural promotion of autistic writers, artists, musicians, actors, inventors, engineers, programmers — both within our community and beyond. Signal boosting. Getting the word out and rallying behind the #ActuallyAutistic people who are doing cool things. We tend to do a not-so-great job of promoting ourselves — or promoting each other on a regular basis. We’re autistic, after all, which can often mean that our energies are limited and our interests are circumscribed. And I have yet to come across other people whose “special interest” area of intense, specialized focus is the widespread promotion of autistic culture. I’m actually that sort of person, but I seem to in the minority. Plus, I’m still figuring out how I can do a better job of it. I’m a strong systems thinker, so I’m naturally working on a system…
  3. We don’t fully $upport our own. If you want culture to survive — even thrive — you’ve got to put something into it. It costs money to live in this world, and if you’re going to make art and write and dance pursue anything which isn’t immediately profitable to the mainstream, you need to have support. Problem is, a whole lot of us are pretty short on cash. A whole lot of us are poor or low-income, and we don’t have a lot to offer by way of discretionary funds. I’m myself, am battling back from the brink of financial disaster, thanks to a series of medical issues which were made that much worse by my communication issues. That’s on top of chronic employment upheavals that have stemmed directly from very autistic difficulties. Things like that are serious problems for many, many of us. And they starve our culture. It prevents us from supporting our creators, and it prevents our artists and writers and musicians and other creatives from building out our world and making our presence known.
  4. Our creators don’t always make it easy to $support them. Cultural support works both ways. Creatives need to find ways to produce work that is accessible to folks without a lot of money. It’s possible. You can do a whole lot for a little bit of money, if you know where to look for the deals and free stuff. Yes, artistic integrity is important. Yes, you have to honor your vision. Now, could you do something like offer your book in digital format for free, on the first day of the month for three months in a row, like Sam Craft has done? It’s a quick way to cut a lot of people a break, while not ruining your bottom line. There are ways. There are options. Creativity applies to the “delivery” as well as the creation of culture.

I could think of more reasons why we’re not standing atop the proverbial mainstream mountain with our AS flags waving high, but let me get back to the point I started out trying to make:

We need to do everything we can to promote ourselves, to boost ourselves, to make our own autistic voices heard and support our own autistic community.

(Click to Tweet)

We can’t expect others to do it for us, especially the mainstream. We’ve got to step up and take our rightful place. Either that, or carve out our own substantial niche where we are very clearly the ones defining our identities and our priorities, and it affects us a lot less, what others say about us. Steve Silberman said in a recent interview that Autistic adults are leading the “first civil rights movement of the 21st century”, and I agree. We have to realize that for ourselves, too. I think we should value our own contributions, our own ways of being and thinking and doing, and spend a little less time worrying about what others think of us.

If we are uncomfortable with how the success of Neurotribes is casting a non-autistic individual in a role as a “spokesperson” for us, what are we going to do about it? Who’s going to step up and respond in kind from within our ranks? We can criticize — and I do think it’s important to turn a critical eye to such matters — but we also need to do something of our own to counterbalance the situation in our favor. Because we can. We have tremendous resources and unparalleled powers of focus, passion, and systematic drive to create new — and better — things in this world.

My problem is not that Neutotribes has been so successful in the mainstream or that images of autistic people are defined to this day by non-autistic folks. It’s that we don’t seem to put concerted effort behind a response to that phenomenon. We can do a whole lot more which is positive and pro-active and displays the full range of what we’ve got to offer.

There are a million different ways of getting out there and making a difference for ourselves. And I think we should explore each and every one of them with every ounce of our autistic capability.

Because we can.

Does my disability make it more difficult for me to accept I’m disabled?

picture of a person holding their head, surrounded by words about self-doubt
Does autism make it more difficult for me to even recognize my disability?

I have to admit, I have a really, really hard time calling myself “disabled”. I have no issues with others identifying as such. I really admire and applaud the disability rights movement, and I follow a number of disability activists on Twitter. The thing is, I’m not sure where I stand in relation to disability in my own circumstances.

There are certain things I simply cannot do. Does that mean I’m disabled, or that I’m simply subject to human limitations? I have a hard time figuring out where the line is drawn — if there is a line, at all. What does disability mean, anyway? That I can’t do what others can do? That I can’t do what I “should” be able to do? That I can’t do what I really want to do?

Where do I draw the line between simple human limitations and actual dis-ability?

It’s a conundrum, and I worry that I’ll inadvertently offend someone by this babble. It’s not my intention. I’m just trying to process it all.

And while I don’t have the answers, there’s a part of me that doesn’t even want to explore what the answers are. Because that could bring me face-to-face with the fact that I am, indeed, disabled in significant ways.

That thought makes me too uncomfortable for words – literally. I shut down and clam up about it. My normally chatty brain experiences the kind of selective mutism that my voice does when I’m in overload mode, feeling trapped, unable to translate the visuals in my head into actual words. I start to close down, and I hate that feeling. Vulnerable. So very vulnerable. And not much fucking fun.

When I think about it, though, realistically, and in short bursts so I don’t short out, I have to say that my difficulties go far deeper than just qualifying as “difficulties”. I’ve read some thought-provoking posts and tweets lately, that really pushed me to reconsider the extent of autism’s impact on my life… and it’s led me down a road I suspect I can’t avoid much longer — a path of actively navigating and negotiating my own individual disabilities. And if I had the energy, I’d be kicking and screaming to stop it. But I haven’t got the energy. (I won’t say “spoons” because that metaphor is intensely synaesthetically jarring to me – I can’t equate the quality of energy with the feeling I get from spoons, no matter how I try.)

Something critical occurred to me recently, as I was posting about coming to terms with my autism assessment:

Maybe, just maybe, I have a hard time wrapping my head around being disabled because of the disability itself.

I have to pay attention [to my autism now]. It’s non-negotiable. And I have to come to grips with the actually disabling aspects of my Royal Aspie-ness. It’s a stretch for me to actually consider myself disabled, and maybe it’s something I need to work towards. But truth be told, there are really significant traits that are disabling to certain aspects of my life. I hate asking for accommodations, and I hate having to navigate the social minefield of explaining my limitations to others.

Might it be — possibly… probably? — that my challenges around interacting with people socially, explaining my needs and differences, and having a terrible time making myself understood, are the very thing that keep me from dealing directly with the fact of those disabling traits?

Is my autistic disability actually screwing up my capacity to address itself in a constructive and meaningful way?

That would make sense. At least, to me. And there’s not just the internal disability of struggling to translate pictures and non-verbal concepts and feelings into verbal communication. There’s the added external disability imposed on me by a world that neither sees nor appreciates the challenges I face on a daily basis. The job expectations — especially social interactions & time commitments — which just keep increasing and exhausting me more and more, the farther I advance at work (which is supposed to be a good thing)… The interpersonal requirements for friendships which I cannot hope to meet, and the failures I’ve experienced which have actually hurt others in mortifying ways… And all along, the “support” of others pushing and pushing and pushing me to do more, engage more, try harder, which all amounts to evidence for a pernicious ableism in their attitudes, as “supportive” as they may intend to be.

Am I setting myself up for problems and troubles, by refusing to address my disabilities? Am I contributing to my own suffering by playing along with all the assumptions about what I “should” be able to do? Am I making all this a whole lot harder than it needs to be? What’s the alternative? To own up to disability, and then have to navigate a confusing, frustrating, confounding social ecosystem which doesn’t know and/or doesn’t care about what  people like me need to live a decent life?

In a way, I realize I’ve been sheltering the rest of the world from my disabilities, because I didn’t want to piss them all off or rain down their ignorant wrath on my head — thus making things even worse than they already are. I’ve been protecting myself from the bullying, the teasing, the taunting, the dismissive sniffs, the atta-boy purveyors of the work-hard-play-hard mainstream hyper-verse, where there’s no excuse for not trying harder, and according to everyone, you just have to have the willingness to MAKE IT WORK. I’ve been living in fear — of both myself and my limitations, and all those who punish me for admitting I have them and asking for a bit of slack because of them.

Then again, I’m actually sheltering myself from their disdain, their bullying, their predation. If you show weakness in the world where I live, it’s “open season” on you. And being on constant guard from attack sets me off like nothing else. It turns my Royal Aspie-ness into a living hell — as I discovered from years of bullying and torment by my peers when I was a kid.

And as a grown woman, it’s particularly wretched, because women are expected to be a certain way, regardless, and when we don’t comply, we’re taken to task first by our female peers, then ridiculed and attacked by the rest of the male world. I would imagine men have the same issues, as well, but I can only speak from my own situation as a woman. And because my skills have more to do with mimicry than math, I can pass. Oh, how I can pass. At my own expense. At no one else’s really… except everyone’s, because they’re not dealing with Best Me. They’re dealing with Shadow Me.

It’s the ultimate self-fulfilling prophecy, really. I don’t accept and manage my disability, and it gets worse. I pretend it’s not a problem, covering it up or calling it a “difference”, and I come up with a million different workarounds that look good on the surface but leave me wiped out, drained, depleted of nearly all my will to go on… until I get a good night’s sleep and I wake up the next day to re-run the same cycle.

And stimming only gets me so far…

It’s logically ridiculous, when I think about it. And it needs to change.

These things take time, though. Workin’ on it..

.


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Frosted Glass – Support the film by Anthony Fairweather – GoFundMe

FROSTED GLASS – A FILM ABOUT THE UNSEEN EVERYDAY WORLD

This campaign is an attempt to raise money to make a dramatic film that looks at the stigma and misunderstanding that can wreck the lives of people with mental conditions. The film takes true events as it’s source matertial and is designed to tell a story of that which is all around us, but seldom discussed.

A quarter of us will have to live with a mental condition at some point in our lives. The condition I live with is Asperger’s Syndrome. Asperger’s is a form of Autism that has been described as ‘looking at the world through a frosted glass window’.

Asperger’s and mental conditions in general have a negative affect on many lives.

I have felt compelled to create this film to show how it can feel. One of the inherent problems with conditions like this is that there can be few discernible physical signs. This is one of the contributory causes to the misunderstanding and stigma.

I have had many experiences that have been caused by this kind of misunderstanding. I have been bullied, turned down for jobs and thrown out of accomodation all because of this misunderstanding. Many others in this world have had comparable experiences.

However, I have also been lucky. I have managed to come through and been handed opportunities that many people never receive.

I believe that if people can see a visualisation of the effect of metnal conditions has on people, they will be able to understand it better and tolerate people better.

At the worst stage of things I started writing poetry describing how I felt. It didn’t make be happy, but certainly happier. Some of the poems that I have written are performed in the film. Through words and semi-surreal imagery I believe I can show it for what it really is, and then we can all understand it better….

The problem can be best summed up this extract of an interview given by Spike Milligan and Anthony Clare:

AC – “You’re like so many people who suffer, you must get very irritated with people who say ‘Snap out of it’.”

 

SM – “That’s silly…it’s like going round with a broken leg – being told ‘Come on, walk, you’ll be alright’.”

 

AC – Why is it so difficult to describe?

 

SM – “It’s invisible, there’s no written diagrams. It’s an abstract, it’s a sensation…”

Of all the post war writers and comics, Spike Milligan is acknowledged as one of the greatest. He suffered with severe mental conditions for most of his life.

I have felt compelled to create this film to show how mental conditions can feel. As I mentioned above, one quarter of us will live with such conditions during our lives, and yet the stigma and misunderstanding leads this quarter to remain a hidden quarter.

Check it out and contribute at Frosted Glass – Click here to Support the film by Anthony Fairweather at GoFundMe