Equality?

While this post originally began its journey as one about humour, it soon changed my focus into one of equality. Hannah Gadsby‘s breakfast speech regarding who should have the right to define the “good …” caught my attention and I started digging around and found out that YouTube’s search engine prefers white comedians, in particular white male comedians. June Mills’ (Australian comedian) interview turned my mind completely away from comedy and humour.

Norway’s own history with regards to our minorities is terrible. I am not counting the new minorities (from 1970’s and on). Their lot is at least covered by law. Instead, I looked into the ones who have been here a long time. Our minorities consist of three groups of Sámi: the Sápmi, Sábme, and Saepmie. Along with the Sámi (40,000) we have (in no particular order) the Kven (about 10-60,000), Jews (1,000), Romani (10000), Forest Finns and Roma (5-600) people.

Since the information I found was incredibly plentiful I’ll have to write about them over, at least, the next three posts.

 

Being human

How do you people stay sane?

When you walk down a street in your hometown or city, or along a corridor on whatever station you visit, how do you stay sane when you see a fellow sentient being who is homeless and hungry, and in need of sanitation and fresh clothes, food and a warm bed, things that you get to enjoy? How do you stay sane when you hear about your neighbor having lost their job, and they’re mired in debt, unable to pay their bills, when you have plenty to spare? How do you stay sane whenever you see an injured stray dog who needs a trip to the nearest vet, with no owner in sight and no one else but you aware of his pain and his plight?

How, meioa, do you and your viewers stay sane when there are so many things you can do to make this universe a better place, day by day, step by step, kindness by kindness, instead of just sitting there complaining about its awful state? How can you and your viewers stay sane whenever you stay silent on matters of social injustice, oppression, and bigotry?

Johnson, J. (2014). Damnation. Penguin Publishing Group. Kindle Edition. (p. 318-319).

Disability vs accessibility

I have a mobility disability. Currently I am planning a trip with my husband and daughter. Having me along makes the holiday much more expensive. This is why:

  1. I need to bring my wheelchair along. That means leasing a car. My wheelchair does not fit into most cars due to its solid frame. It has that frame to make it lighter so I can lift it in and out of cars. When it comes to cars, that means I will need a car with a fairly large boot. Environmentally, I feel guilty because my imprint is much larger than a person without mobility issues.
  2. The places we stay need to have access to parking (obviously). They also need to have an alternative to stairs. It’s not that I cannot walk up stairs, but after a day of sightseeing it will be intensely painful. In fact, everything will be more painful, so I do not wish to make it worse than it will be.
  3. Some places are inaccessible to me. I am fortunate in that I can walk, so getting my chair in and out of places is a simple matter if I have a person with me (read husband/daughter/son). But once I am inside, the chair has to be accessible. That is because I cannot sit on many surfaces. It hurts too much. My wheelchair is adjusted to my body (as much as possible) and I can deal with that pain. Guided tours usually do not work for these reasons.

Being disabled is expensive. Both economically and environmentally. But I have the feeling that compared to a huge percent of the population our impact is very little. That is because we generally have to put quite a bit of planning into what we do. I would guess that is the case for most disabilities to a greater or lesser extent. This article about the twitter discussion on Lazy vs Disabled vs Environment is highly relevant and thought provoking.

So there’s a debate going on, on Twitter right now between disabled people and people who either claim to care about the environment and or just want to complain about “lazy people”

The tweet that started it all

orangegate cropped

Image Description: tweet with a picture of peeled oranges in plastic containers on a grocery store (whole foods) shelf. Tweet reads “If only nature could find a way to cover these oranges so we didn’t need to waste so much plastic on them”

The original tweet has been shared over 70,000 times. Whole Foods has apparently agreed to remove the prepeeled oranges from their stores. Environmentalists and those who hate laziness rejoice!

The problem is that this discourse completely ignores how preprepared food impacts people with disabilities. The most common complaints about the sale of these oranges is either the wastefulness of the additional packaging (which is true but somewhat misdirected as I’ll discuss later) or that anyone who buys this must be incomprehensibly lazy.

As a person with limited hand dexterity, I look at this and see an easier way to eat healthy food. I actively avoid eating oranges, not because I dislike them (they are definitely tasty) but because I have so much difficulty peeling them. Any attempt to peel an orange is likely to result in an unappetizing mess because I’ve squeezed the orange to hard while trying to maneuver it for peel removal.

I don’t have access to peeled oranges from my grocery store though I’d probably take advantage of them if I did. I do buy precut vegetables all the time because it is more convenient and safer for me to do so.

Preparing food with limited mobility is both hugely time consuming and potentially dangerous. While adapted cooking tools do exist to help offset those issues they are really expensive (I wrote about thathere).

Anything that helps make my regular acts of daily life safer and more convenient is always a plus. So I was one of a number of disabled people who pushed back against the wholesale shaming of preprepared foods. The responses I got were informative in looking at how nondisabled people disregard and try and shut down discussions of accessibility. Rebuttals to inserting disability and accessibility into the conversation included what I consider the most ridiculous attempt to maintain the moral high ground. It was,

I mean accessibility is nice and all but you know that wasn’t the thinking behind this product. It wasn’t designed for disabled people.

You know what, that’s probably entirely true. Whole foods was probably trying to cater to the convenience aspect. This is supported by the fact that the protest against the product on environmental and anti-lazy grounds was so successful.

The thing is this argument is hilariously irrelevant. In fact it shows that things don’t need to be directly conceived as accessible products to function that way. In many way things that are accidentally accessible are better than things that are specifically designed to be. This is because things that are accidentally accessible are marketed and available to everyone and are thus likely to be more easily available that an accessible product which is likely only sold in specialized stores. Seriously, accessibility that requires no thought to implement is the best.

Other arguments I got were,

Peeled oranges have a shorter shelf life so how convenient are they really?

This is true and it indicates just how much planning has to go into living while disabled. I have to plan my meals around the fresh produce I buy more strictly that others because I buy some things precut. This can be inconvenient but it pales in comparison to being forced to rely more heavily on canned or other processed foods that have a longer shelf life. My disability doesn’t disappear just because a whole head of cauliflower will last longer in my fridge than smaller prepared florettes.

and

Peeled oranges are certainly going to cost more than unpeeled and isn’t that a barrier?

Also true but here’s the thing, being disabled is expensive and costs for accessible products can be prohibitive. It is however easier to budget for the extra dollar or two that prepared fruits and vegetables are going to cost every couple weeks than the dozens or hundreds of dollars buying adapted cooking equipment will cost up front. This is a case where the cost should be the cause for protest not the cost being used as an excuse to protest the product. I’m all for my life being more affordable.

Other disabled activists dealt with other arguments. The person who argued most ardently with me was actually pretty tame and seemed more clueless than anything as they clearly didn’t think their arguments through and went away quietly when I calmly rebutted their arguments. Others were not so lucky. Things got a lot messier and ableist as Twitter user Ana Mardoll learned as she systematically tore apart those arguments (for a full view of this thread click here)

Issues arose when protesters prioritized the environment over the experiences of disabled people. Though as Ana points out those plastic food containers are hardly new. They are a ubiquitous sight at any grocery store deli housing things like artisanal cheese, salads and mac & cheese. Yet how is it that the wastefulness arguments crops up over something that is accessible, rather than the widespread use of plastic containers generally. Not to mention at least these look like the could be reused or repurposed. Where is the protest over bags of prepared salad? I guess peeling an orange is to easy but the convenience of salad in a plastic bag is to much to be denied.

Ana further points out that disability inherently comes with a greater need for product consumption. Disabled people need mobility aids and other tools that inevitably have an impact on the environment. Many of the people she encountered appeared to suggest that in the fight for the environment, disabled people are too inconvenient and should not be accommodated………

The rest of the article may be read at Crippled Scholar

Enduring bullying – one of my heroes

This post has been moved from my book-blog to this one

Hans Petter som liten

Man, I’ve re-written this article so many times. Who knew something like this could be so difficult.

My little brother. The baby of the family. A baby who is 195 cms worth of length. I think that translates to about 6’4″ for those of you who have not yet advanced to the metric system.

We go back a long way. In fact all the way back to the time when I was about 6,5 years old. I have no memory of him being born. In fact I have very few memories of him as a very small child other than the fact that he was really cute, I wanted to bite the top of his head and we would swing him between us down the long hill from church. He loved that.

My memories of my youngest brother do not really amount to much until the time our family moved to the US. He was around 7 years old at that time and his life was about to get really tough.

You know how some kids take to bullying like ducklings take to water. Well my baby brother had the great misfortune of meeting up with some of those kids. As a seven-year old boy my brother had three things that made him stand out. The first was that he was a gentle kid (he is now a gentle man) who did his best to avoid trouble. The second was that his English was poor due to us just arriving in the US. Finally, he has dyslexia. Three gifts for a bullier. Some kids and their parents I just want to beat to a pulp.

Five years of hell ensued. How did he respond to the bullying? For one thing he never changed from being a gentle person. He just wouldn’t give in and give up. He was fiercely protective of those he loved. At one time he even took on another kid for something that kid said to me. I didn’t stop the fight. In fact I figured it would probably give him credit with the other kids. But that was and is the kind of brave person he is. If someone he loves is being hurt, he will do his best to protect that person even if it means getting hurt himself.

It’s one thing to do something like that if you are good at it – whether you fight with words or physically. But my brother has never been one who has quick come-backs or been a good fighter. Granted, all he has to do is sit on you now and he’ll probably win, but still. Fighting with words and body has never been his strength. He has paid for that a great many times.

Why would that make him my hero? It’s all about love. His love for people is so great that he is willing to risk himself (and he knows he is risking himself) for them so they might hurt less.

Melt-down time

This post from October 2014 has been moved from my book-blog to Identities.

Hiding by Photodream Art
“Hiding” by Photodream Art

Saturday I had my first major melt-down in a long time. I was at a family gathering. My family is loud. So am I. All of that loudness over a long time becomes confusing. I cannot help but hear everything that is going on, and concentrating on one conversation takes a lot out of me. Add to that strong emotions from a few of the participants and visual stimulus and I was teetering. The thing that pushed me over the edge was that I had been overly optimistic about the time my medication would last.

All of a sudden I knew I had to get out of there. If I didn’t I had no idea what would happen. Major melt-downs are like that for me. Thankfully, my husband saw that all was not as it should be and we got the crew going. Driving home I had to keep my eyes shut tight, put my fingers in my ears to lessen the volume and bend forward. Then I breathed as well as I could and kept on trying to get myself back on the edge. When we got home, I took my medication and went into my room, wrapped myself in our duvet and read a book.

That was when it hit me. I had kind of guessed that this was my method of handling the world when I was younger. But the feeling of desperation and pain that I felt Saturday evening and the relief it was to hide brought back memories of childhood.

My parents had no idea I am Asperger. Whenever I tried to hide at parties (i.e. hide behind a magazine or book) they thought I was  being rude or pouting. At home I had to get away at times and hid in my bed all covered up and behind a book. My family thought I was out of sorts and would try to cheer me up. The thought was kind enough but just made matters worse. I was often accused of pouting. Looking at it from an objective point of view, I can see how it would seem that way. But pouting was the last thing I was doing.

I hate being dependent on my medication, but I dislike melt-downs even more. I love parties and noise. But once my level of stimulus tolerance is reached, I need to leave or find a quiet place. Being reminded of how long my strategy has been used and how comforting it is to me was interesting and educational. I wish I could have avoided my melt-down on Saturday. At the same time I am thankful for the trip down memory lane and all that it taught me.

The illusion of empathy?

Tame people/non-autistic people/illogical people seem to think that they possess the gift of empathy and that ASDs/wild people/logical people do not. But do neurotypicals actually have the gift/curse of empathy?

NO!

The Oxford dictionary explains empathy:

Empathy means ‘the ability to understand and share the feelings of another’ (as in both authors have the skill to make you feel empathy with their heroines), …”

There are certain conditions that have to be fulfilled to understand and share the feelings of another.

  1. You would have to become that person, ie. have their genetic background, grown up with their propaganda, lived in their family and lived their lives.
  2. Or, you would have to be an empath – their feelings would be projected into your brain and correctly interpreted by you.

Out of 7 billion people there may be some who are empaths. But psychological experiments seem to indicate otherwise. I know that I have never had another person understand and share my feelings. People have certainly claimed to know what I was feeling. Through manipulation they have even made that claim come true. Most likely, the other person projected their own values, feelings, thoughts and ideas on to me.

What would happen if people actually experienced empathy? For one thing most of us would go completely insane. The above pictures illustrate why. To understand the other person’s pain we would actually have to experience it. Evolution has wired humans to survive in any way possible. Because we have become so many stuffed together into smaller and smaller places, we unavoidably cause damage (whether they be our own breed or not). Being jostled by the emotions of others would overwhelm our sensory systems over and over and over. For those of us who already struggle to filter out unwanted material, adding being able to sense emotions would be torture.

The idea of being in empathy with another person falls into the same category as magic.

Writing about my own autism also affects others

Autism awareness - background
Any blogger who ventures out of their life and dares speak truth about their life and the lives of others risk being belittled for what they do. I have not experienced that as a blogger. However, I have met harshness from parents who feel I am underqualified to speak for their child. To a certain extent this is true. I do not personally know either them or their child, so how can I possibly know what their personal needs are? But I can say something about how autism affects me and my child.

Autism is like any other spectrum, it is a spectrum. Not one autist / asperger is like another. Our personalities and temperaments vary wildly. Even in my own family I cannot say that what works for me will work for my son. But there are commonalities and these I am equipped to speak about. It is incredibly validating to read a post like the below. While I really do not give a shit about what people think my qualifications are worth, there are many out there who are a lot more vulnerable. To you, I say: read this and draw comfort from it.

“You don’t speak for Low-functioning autistics

Not-autistic people use this line a lot when trying to devalue the statements of autistic people that they deem as “high functioning”.

So, as one of those “low functioning” people they point at as counter-examples, I am standing up and saying “yes they do.”

I do not speak, I do not understand when you speak. Remember you said “those people who cannot speak” as evidence of the label.

I need help going potty. I am not proud of it, but it’s a fact of life. I need to pee just as often as you do, but my body doesn’t tell my brain that, so sometimes my pants get wet when I remember to put them on. That makes me low functioning by your standards. Remember – you said “those people that need help going to the bathroom” as evidence of the label.

I cannot make reasonable decisions about finances. I spend hundreds of dollars a month on an Internet site that gives me a virtual world in which to have friends because in the physical world people scare the poop out of me (see previous point about why that is a bad thing). Remember – you said “those people who can’t handle finances for themselves” as evidence of the label.

I need 24/7 care so I don’t hurt myself by accident because I forget what I am doing while I am doing it, such as cutting an onion with a sharp knife and wave my hand with the knife still in it. Remember you said “those people who need round the clock care” as evidence of the label. ….”

The rest of the article can be found at Lysikan on tumblr

Disability Day of Mourning 2015

It is this whole we/them way of thinking put to use against Autism/Aspergers and any other form of disability that annoys the majority. I don’t know if there is any other real way of fighting such attitudes beyond raising our voices the way Caffinated Autistic has in this article.

War and innocents

Never Alone by Photodream Art
Never Alone by Photodream Art

 

I’m going to try to stay as objective as I can on this subject. Objectivity is important because I believe that all parties who engage in war are wrong. We all see the world from a point of view forced into us from the time of birth. Other points of view are often seen as wrong, evil, sinful and other words denoting the same theme. My point of view is that all points of view are right and wrong, and that power-hunger lies behind violent actions. Perhaps that is my autism speaking, or maybe I’m at the point in life where I realize that there aren’t that many true motives for what we do.

How would I have reacted if I had experienced the killings in Peshawar, Pakistan?

In the deadliest slaughter of innocents in Pakistan in years, Taliban gunmen attacked a military-run school Tuesday and killed 141 people — almost all of them students (Prince George Citizen)

Or been one of the girls kidnapped by Boko Haram?

Of the 276 girls seized from the school, 219 are still missing, despite government claims in October that a deal for their release had agreed with alleged Boko Haram negotiators. (Zeenews)

Perhaps I could try to figure out what living in the areas that ISIS kill their way through would be like. Maybe even one of the children whose “religious education was now over”. (Reuters)

Credit: The Moonlight by 10B
Credit: The Moonlight by 10B

What would it be like to live in the US having the “wrong” color of an African-American (USA Today)?

I can never understand how the people going through these things are feeling or what they are thinking because I will never be them. People think that autistic people cannot put themselves in another person’s place. Why any person would think that they could place themselves in another person’s mind or emotions is beyond me. People can only truly understand and empathize with their own feelings. What we do when we try to understand others is simply a projection of our own emotions. What I can do, is try really hard to imagine how I would feel (or have felt) if something gruesome happened to me. Many autistic people have plenty of those experiences to remember.

Kim Phuc - the Vietnamese napalm girl; Credit: Nick Ut
Kim Phuc – the Vietnamese napalm girl; Credit: Nick Ut

There are some experiences in my life that could help me on my way to pretending that I was in one of the above situations.  Seven years of my school life were spent being bullied. During that period I was intermittently sexually abused. My autism has placed me as an outsider because of things I do and say when I am with NAs (non-autistic). Then there is a handicap brought about by child-birth. At times it is highly visible (wheel-chair) but when it is not I have received some pretty harsh comments.

None of these experiences are the same as the ones above, but they do give me a starting point for trying to understand what it must be like to live those lives.

    • Children in Liverpool playing while wearing gas-masks and protective clothing; Source: The Liverpool Echo
      Children in Liverpool playing while wearing gas-masks and protective clothing; Source: The Liverpool Echo

      Fear is my first thought. Fear creeps into the crevices of our minds and glues itself to all the neurons that will accept it. Life would probably always have an element of this fear. At times it might become panicky and completely irrational while at other times fear could combine with a clear mind and give me enough adrenaline to find a way to deal with what was happening. But fear would always be present.

    • My tendency in dangerous situations is to dissociate. Inside my head that means everything from distancing myself from what is happening to blanking out while whatever is going on happens. Sometimes I later remember the dissociative experience. Other times it is gone forever. But my body remembers. Certain smells and sounds used to bring out an intense fear-experience. Shudder.
Hiding by Photodream art
Hiding by Photodream art
  • Usually there is part of my head that manages to stay cool. At times I have even been able to do what needed to be done, and then later on I would have a melt-down. My non-melt-down part is able to figure out everything while the rest of me melts down in my “safe” place. For me that is a corner of my mind that I crawl into.
  • Then there is helplessness. Feeling powerless is awkward. Hope disappears and it is as if I have accepted whatever situation I have been forced into. Perhaps once the feeling of helplessness has arrived, giving up is right around the corner. I imagine many of the perpetrators above hated their feelings of being powerless so much that they were willing to do anything to get some kind of power. Killing, maiming, raping and destroying became a way of grabbing for what they wanted.

Point of view depends on which side of a conflict you stand. I do not know how the powerless can gain power without harming people. What I do wish is that those who grab for what they do not have could try to realize the extent of harm they are doing others, probably innocent others, and find a method that goes after those who do not wish to share power.