Disability Misery

I’m multiply disabled, by whichever model you use. I am on disability assistance and I live in Canada where I even have access to healthcare. Given all this, you might think that the fact that I still have disability related depression, that I am proof that disability really is misery. That the medical model is right.

I want to make this really easy to understand.

I’m not miserable because I’m in pain.

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Disability Misery
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Oryx and Crake: Jimmy’s Mom

CN: Spoilers for Oryx and Crake, Mentions of abuse and infertility,

Sometimes when I’ve read a book multiple times, enough to know it really well, and I need something to read for a short period of time, I will pick up a book and read it at random spots. For a while now, Oryx and Crake has been in the bathroom, and every once in a while, I’ve picked it up and read certain parts.

While doing so lately, something has been jumping out at me and I have a new suspicion about something that I think is going on in the background of the story.

I believe that Jimmy’s mom suffered some sort of illness that resulted in her becoming infertile after she gave birth to Jimmy.

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Oryx and Crake: Jimmy’s Mom

The Unfunny Incompetence of Social Services in New York

TW: Domestic Violence, Systemic Violence, Bigotry

As some of you may remember, I talked about the possibility of going to New York, to help a single mom friend who had hurt herself. I was doing a fundraiser to be able to afford to go (I could still use some donations to help recover from the financial strain. And also to cover unexpected expenses).

Well, earlier in July, I finally went. Many of you may be wondering why it was so urgent. While it is true that an injured ankle makes things hard to deal with, especially for a single mom with an active kid, but it doesn’t seem like the type of thing to really justify spending so much money to go help out. Heck, taking a cab around would be cheaper.

The truth is that out of concern for privacy and at the request of my friend, I left out a lot of details. While it is true that she did injure herself, and that a portion of my help was to make things easier on her for a few days, the truth of the matter is that I was going there to stand witness and see what I could do to help her with a much more complicated issue.After my visit, my friend gave me permission to release some of the information on my blog.

You see, my friend was a victim of domestic abuse. Severe domestic abuse. Her partner hit her, sexually assaulted her, the details of which are so unbelievably horrible, that the court had a hard time accepting the truth of it. That was six years ago, and this man will likely never see the inside of a cell for what he did. My friend however, has had her life, and that of her child, completely hijacked.

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The Unfunny Incompetence of Social Services in New York

Guest Post: The Stigma of Mental Illness and Religiosity: A Dual Insult

Guest post by Katrina Halfaker

 

My life is defined, to some extent, by my mental disorders. To be chemically different is to be a lesser. It is to be stigmatized. We’re cast as violent, deranged, and irrational even though we are ten times more likely to be victims of abuse, often by those in positions of power, whether they be police officers, academic administrators, loved ones, or strangers on the street.

 

I’m an atheist with OCD, which is comorbid with other anxiety-based disorders, and I noticed clues of their onset as early as when I was ten, as did my family, though they never took me to a doctor. In the last year, I’ve dealt with mild pubic trichotillomania. Years before, I developed a binge-eating disorder (which led to childhood obesity). It went quiet for a while, but still, it occasionally asserts itself in relapses. Every single person in my immediate family has been or is currently affected by at least one major disorder (diagnosed and undiagnosed: SAD, borderline personality disorder, and depression). I was raised in a religious household and educated until teenage-hood in a low-key Creationist school. We never had a licensed school therapist or nurse, or any provisions outside of an occasional hearing and vision test – but we did have chapel every week.

 

So, yes: I know the difference between reinforced frameworks and chemical diversity.

 

Many of you, my fellow secularists, need to understand one very crucial aspect of this dilemma: you have made it personal when you call religion a mental illness. And you have transgressed in ways you believe you have not. And you are unwilling to acknowledge it.

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Guest Post: The Stigma of Mental Illness and Religiosity: A Dual Insult

It’s All in Your Head:

The false dichotomy between physical and mental illness

It used to be thought that different illnesses were the result of demons and evil spirits. In the bible for example there are instances of epilepsy that are treated as demonic possession. As physical explanations were found for different disorders, the supernatural explanations were abandoned in favor of scientific ones.When it comes to mental health disorders however, physical explanations are harder to grasp and find. Not because they don’t exist, but rather because a lot of brain related research is either not possible with our current technology, or must be undertaken with great care for ethical reasons.  As a result, our society has created a separation between physical illnesses and mental ones.

On some levels, this separation make sense. When we think of physical illness or disability, we think of some physically embodiment. Take Crohn’s for example: with the right equipment one can point to the inflammation and ulcers in my intestines as an explanation of why I am feeling the way I am feeling. With mental illness, however, a lot of times we are dealing with something a bit more intangible: emotions and thoughts.

This separation is a false one however, that actually creates a lot of misunderstanding and harm. Because we see mental illness as dealing with something intangible like emotion, there is a social perception that mental illness isn’t real. That it is “all in your head”.

The truth is that mental illness is as much a physical thing as any other illness or disability. The brain is as much a part of the body as a leg or intestines. Depression, anxiety, and other such conditions may manifest themselves in part as emotions and thoughts, but those are expressed symptoms of underlying conditions in the same way that pain is an expression of inflammation or injury.

Moreover, it ignores the fact that all perceptions are “in our head”. If you consider pain, for example, while our bodies processes the injury causing the pain at the point of injury, the actual experience that we call pain is processed in our brains. This doesn’t mean pain doesn’t exist. In fact, we know that pain not only exists, but it is necessary for our survival. We know this because of individuals with CIP (congenital insensitivity to pain), a condition where people cannot feel physical pain. People with CIP need to consistently measure their body temperature and be very careful because it is possible for them to injure themselves, like break a bone, without realizing it.

Every tactile experience, every visual one, every auditory one is processed “in our heads”. If you say that mental illness isn’t real because it is “in your head” you are essentially saying that every experience we have isn’t real. Our whole lives are lived in our heads.

There are physical symptoms of mental illness as well. Many people who have depression experience joint pain, as well as fatigue. Anxiety can cause your blood pressure to spike, can cause chest pains, nausea, acid reflux, and a whole host of other symptoms. There is absolutely a physical component, so treating it as if it is something separate ignores important aspects of mental illness.

Moreover, treating mental illness as separate from physical illness or disability, ignores the fact that physical disabilities and illnesses often occur in conjunction with certain mental illnesses. Specifically, many people with disabilities have more risk factors for depression, anxiety, and PTSD. This can be the result of the imposed social isolation that many people with disabilities experience, or in some cases may be a result of their illness. For example, Crohn’s Disease, in addition to the pain and physical symptoms that can increase the risk of depression, the inflammation of the intestines can also lead to a lower absorption of Vitamin D which can result in depression.

Because physical and mental illness are treated as separate, those of us with disabilities are not given adequate access to mental health care. In an ideal world, every person with a chronic illness or disability would be given access to a mental health professional who would manage their mental health in conjunction with their physical health. The connection between the two would also make it easier to argue for social contact as an accessibility need.

The way the world is set up now, people with different types of disabilities experience social isolation as a matter of course. This can be as a result of symptoms, or often as a result of insufficient accessibility. Because mental health and physical health are seen as separate, the idea that disabled people are prevented from being able to socialize effectively due to barriers such as transportation or even just on-site accessibility, is not seen as a big deal. Government officials see closing down programs and businesses that encourage and enable disabled people to socialize as risk free. People feel the need to vandalize playparks that are set up to be accessible to disabled children.

The false dichotomy is actively harmful to all disabled people. It enables people to ignore the needs of the mentally and the physically ill. It is meant to divide and shame. It is meant to pit us in false competition with one another, in the hopes that it will distract us from the systemic ableism that is so ingrained in our society.

It’s All in Your Head:

HOW ADHD SHAMING ALMOST KILLED ME

TW: Discussion of Depression and Suicidal Ideation, descriptions of self-harm.

Just getting diagnosed with ADHD was a struggle. I remember the doctor I was seeing at the time giving me a lecture about drug seeking behaviour. When I pointed out that there were easier ways to get drugs than trying to get an appointment with a psychiatrist she relented but asked me why I wanted to be diagnosed if I wasn’t in school anymore.

The cultural perception of ADHD is that it is just a matter of too much energy. You hear all sorts of people extolling the virtues of good old fashioned exercise, or warning people about the dangers of giving children drugs similar to amphetamines. No one takes the time to think about how medications work. This is evident when they start talking about Ritalin or Concerta being the sit down and shut up drug.

ADHD changes the way you think. Not what you think, but rather how you think. It falls into the category of brain conditions that are considered neurodivergent.  It also has a high rate of comorbidity with autism. It’s not just “undisciplined” or “lazy” kids who need more exercise, it causes structural changes in the brain and can even impact how you react to different medications.

Most people however still have a hard time believing that the condition even exists.

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HOW ADHD SHAMING ALMOST KILLED ME

Bees Knees

 

Cartoon Bee

I am terrified of bees, and wasps, and anything I think might be a wasp. Don’t get me started on hornets. I don’t just mean that they make me nervous, when there is a yellow jacket around me my mind descends into mind-numbing, gibbering terror. If I’m lucky, I completely shut down and stay as still as I can while shaking like an incontinent Chihuahua on a priceless Persian rug.  If I’m at my breaking point however, I shriek and run as fast as I can in the opposite direction, and towards the nearest door I can hide behind.

The fear is completely irrational. There are a couple occasions where it was possible I was stung. It hurt, but it wasn’t overwhelming. It was enough that I was never sure whether or not I had been stung.

I have no idea how it started. My parents insist that it was me trying to be like my best friend, an older girl that I thought was absolutely amazing. She was afraid of bugs and so I was afraid of bugs. I don’t know if that’s true, it might be. I remember exactly the moment that I became uncomfortable around crickets, but my fear of bees just always seemed to be.

It gets in the way of my life. My fear of bees keeps me from spending time outdoors. If we go out to eat and there is a patio, I come up with excuses about why it is better to eat inside. The sun is setting and the mosquitoes will be out soon. It looks like it might rain. Or maybe it’s too hot, and I would rather eat where there is air conditioning. I can’t let people know just how much this affects my life. How I avoid going for a picnic, or reading in the park.

Most of my time outside with people, I work hard to appear calm. My eyes dart around, locating every winged creature around me. If I spot a wasp, I watch it so I know exactly when it passes by me. I tense so that I don’t jump or run. I can’t relax because if I do, I know that I can be taken by surprise and my secret will be out. My ability to modulate my response always follows the same pattern: a the start of summer, the bees are too new again for me to be able to stay calm. After a few weeks, I can function just barely. I can sit still under an umbrella and slowly talk myself out of completely breaking down. But by the end of the summer, I’ve used up all of my reserves and I just cannot handle it. I stay seated for maybe the first five, even ten minutes, but after that I have to get away. I have to put distance between myself and the object of my terror.

The tracker-jacks in the Hunger Games series are my nightmare.

It’s one of the reasons I love water. Bees cannot live under water, so when I am in a pool I can be safe. I can swim away, I can duck under. Spending time in a pool is one of the few ways I get to spend time outdoors.

It’s why I love fires, where the smoke keeps them away and anesthetizes any that might be in the area.

For years I was terrified of wearing perfume, or deodorants with floral scents, convinced that the smell would attract them to me. I used to love the feeling of grass on my bare feet, but now I am scared lest I step on a fallen bee.

I know my fear is irrational. There is no basis for my fear. I’m not allergic. I haven’t been badly stung. I’ve never been attacked by a swarm, or even lived somewhere where bees are especially dangerous.

My fear is why even though I love plants and flowers, I despair of ever having a proper garden.

I look for solutions, since a life completely indoors is not healthy. One such innovation I managed last year, was putting up (albeit badly) a screen around my balcony. Effectively keeping a barrier between me and my winged terrors. Even the fact that some wasps had built a nest by our living-room window was ok, because there was a screen between them and me.

This year, I need to find the money to do the same thing again. Maybe this way I can finally spend enough time in the sun to take me through till winter.

This is what is meant by a phobia. It’s not just being afraid of something. It is a fear that actually impacts your life is significantly negative ways. It can mean preventing healthy social interaction, or being unable to perform healthy behaviour because of your fear. Coming in contact with your fear is not just a startle and a moment of fear. It is a traumatic event. I’ve hurt myself trying to get away, because the fear provokes a survival response. In my brain, that encounter provokes the same response as being attacked.

It’s not something I can just “get over”. It’s not something I can rationalize away. I know that bees are important to the environment. I heartily support community beekeeping programs, even as the thought makes my stomach plummet to my feet.

This is why it infuriates me when people think it is funny to call something a phobia. Or worse, when people think it is funny to respond to someone sharing a fear by scaring them. Like people who post spider pictures, when someone says they are afraid of spiders.

It is not a laughing matter. My heart stops and then races. I can’t breathe. I am like a deer in the headlights. I want to curl up in a ball and cry. I shake. My crohn’s acts up later. I become so cold. It takes me a while to recover.

I am working to get better. I have already improved, and in the meantime I find ways to reintroduce myself to the outdoors. With luck, I can install a better screen this year and spend more time on my balcony. And now you know.


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Bees Knees