Disability

Don’t Make Me Pee In Your Fruitloops

It’s happening again.

Someone came up with a brilliant idea. Hey, why don’t we charge money for public toilets?

The reasoning is that by charging for bathrooms, the only people who will use them are people who actually have to go. Cut down on public sex, drug use, and raise money for the city all in one go!

Except?

Except this is just another example of how often the rights of the disabled are trampled over in the interest of “the greater good”.

What’s the big deal? It’s just a bathroom? If you can’t afford to use it, just wait till you get home?

Bathroom use is one of those interesting issues. On the surface we know that it effects everyone. One of the most recognized books in toilet training is literally called Everybody Poops. We don’t need to be socially convinced that people need access to washrooms. Where we make mistakes is in taking bathroom access for granted.

For the average person, if you need to use the bathroom, it is just a matter of finding one. You are able to devote a bit of time to looking for one, and if it takes a little while to find it, you are able to hold it in until you do. Chances are you have a restroom in your home and/or at work.

But some of us are not the average person. Some people are like me. (more…)

Sometimes the Cure Really is Puppies!

For the last several months, I have been dealing with increased Crohn’s like symptoms: an increase in pain, in nausea, and in extreme exhaustion. All the tests however are coming back normal. It’s possible that one of three things are going on:

  1. The symptoms are being caused by my IBS instead of my Crohn’s.
  2. My Crohn’s is active in my small bowel and we need new tests to detect it.
  3. I am one of the percentage of Crohn’s patients who have symptoms but the location of the disease is hard or impossible to find. Crohn’s sometimes likes to hide.

The doctor’s advice was for me to “take it easy” in the hopes that less stress will mean less symptoms. This is especially the case if the bulk of the symptoms are the result of the IBS. The problem of course is that in terms of stress, I am already on disability. I don’t work in the traditional sense, though I would argue with anyone who would try to say I don’t work. (Ever try to make 70 hats in under a month? Ever write a book?)

Most of my stress comes from the poverty that comes with being on disability. I live on a fixed income that was fixed long enough ago and hasn’t accounted nearly enough for inflation. I live on an income that depends on me having to make additional money but not so much that they start docking my support. My anxiety fixates on things, sometimes legitimate and sometimes not. In addition my depression sets off my anxiety.

If I can’t actually make more money and money is the leading cause of my stress, and I’ve already done as much as possible to relieve other forms of stress, what else is there?

I’ve looked at the problem extensively, and a thought emerged. You see, whenever I am around someone’s anxiety service dog that dog responds to me in a way indicating that they want to alert me. More than once, I’ve been alerted to an anxiety spiral by a dog on multiple occasions. When that happens, my sudden awareness of what is going on helped me work on therapy techniques to draw me away from the spiral.

It makes sense. When you live in a circumstance where some measure of nervousness and worry is justified, how do you differentiate regular worry from pathological anxiety?

For some time now, I had been considering the possibility of a service dog. The biggest barriers always seemed like a lack of easily accessible information, and an assumption that the costs would be prohibitive.

Then a little bit of luck came my way. I met a wonderful person who not only had an anxiety service dog, but had gone through the process herself. Her animal is what is called an owner-trained service animal, a designation that is not allowed in some places but luckily is in Ontario. Now, I am still learning what there needs to be learned, but I can say that an owner-trained service dog is NOT a fake service dog. It is simply one who was trained by the owner rather than by a specific program however, they both need to meet the same level of qualifications.

This person was willing to help me and let me know how to go about it.

With the consultation of my friend, and the pressure from my increasing symptoms, it seemed as though we were being pushed in that direction. In addition, our dog is starting to age and it getting to the point where a younger companion could do a lot to keep her in good health and extend her life. The final decision was aided with a promise from my parents to help with some of the costs in the form of a Christmas present.

We decided to give it a go and early this week we welcomed CJ (After CJ from West Wing) to our family.

Our choice of breed was dictated by a series of considerations:

  • Our home
  • Our lifestyle
  • My ability to handle certain weights

All of these considerations pointed us to a small dog. Toy breeds are also very attuned to humans since they grow up in much closer contact with people than other breeds.

My friend helped me administer a temperament test more than once, one based on one of the recognized assessment tests out there.

I will be writing about the process while I go through it. But first…. Puppy pictures!

Tiny Black and Beige Chihuahua Puppy
Tiny Black and Beige Chihuahua Puppy
Tiny Black and Beige Chihuahua Puppy Tiny Black and Beige Chihuahua Puppy
Tiny Black and Beige Chihuahua Puppy

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.

(more…)

Small Rock

I have lived long years of endurance.

Long, long years of loud rooms full of people I never learned to like, who couldn’t be bothered to learn to like me either.  Long years of being at parties but not part of them, dreading the part of the night where the group splits into smaller groups that head to different places, not having enough of a link to any moiety to make any path make sense, too determined to have “life experience” to give up right then.

Long, long years of being only minimally able to care what I was wearing, because none of it seemed worth excitement.  Long years of burying myself in oversized Hawaiian shirts and their kin with East-Asian-inspired prints and jeans that just barely fit into the rough, unkempt aesthetic of the 1990s.  Long years of intensive patterns and cycles maintained because as long as I maintained them, I never had to think of what might replace them, never had to face the yawning, perfumed void over which they stretched, never had to know why.

Long, long years of holding a beloved pet behind a locked door and weeping softly, without knowing why.

(more…)

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.

Your Transantagonism is also Ableist

Recently Ophelia Benson added to the TERFY hole she’s been digging by tearing into an abortion provider who chose to use inclusive language when discussing issues surrounding pregnancy and access. It’s an issue that comes up surprisingly often. The discussion around genitalia is so needlessly gendered, that people often fall into the trap of equating body parts with identity.

The equation of women with “having a uterus” or the ability to have children is obviously exclusionary to both trans men and trans women. Not everyone who can get pregnant is a woman and not every woman has the ability to get pregnant. It is also exclusionary to many of us with disabilities.

The social equation of women with having a uterus is extremely damaging to women who, for one reason or another, have lost their ovaries, or uterus. Many of them struggle with feelings of inadequacy or identity loss for this reason. Harmful concepts, like those established by patriarchy and outdated feminist concepts that reduce women to their genitalia, only make the struggle more difficult.

(more…)

Rant: $13 a Pill is Still Ridiculous

The internet has been alive in the last few days with regards to the hedge fund manager who raised the cost of a pill from $13.50 to several hundred. People were outraged, his email was made public, and the anger even received news attention. The public outcry was so great, that the businessman involved returned the price back to normal, or so it was recently reported.

The pill in question, was widely reported to be an HIV drug. People could understand that most people with HIV would never be able to afford such a dramatic increase. There was discussion and outrage over how many people would die as a direct result of this unfair price increase.

I’m glad the outrage happened, and I am glad that the discussion came up, but what surprises me is that in all the commentary, no one pointed out just how ridiculous the original cost of the pill already was. $13.50 a pill, for a pill that needs to be taken daily amounts to almost $5000 a year. That’s over $400 a month. What’s more, this medication isn’t even a treatment for HIV. Rather it is a prophylactic for some of the opportune infections suffered by people with compromised immune systems. The drugs that treat HIV can be even more expensive. There are people dying because of the costs NOW.

It’s not just HIV treatments either. My own medication Remicade, even in Canada, costs $1000 a vial. I take 10 vials every 6 weeks to treat my Crohn’s disease. That’s $10,000 every six weeks. I had to apply for special coverage for this medication from the government. A program called Trillium that gives prescription coverage to low income people. The problem is that they get to decide whether or not I get my medication. Because Remicade is still on Patent and being studied, there is a coordinator who has to have special forms filled out every year to evaluate whether or not the government will continue paying for it.

(more…)

Crack in the Womb

[Spoilers for the Season 1 finale of Steven Universe follow.]

The moment that sealed Steven Universe into richly-deserved fame and a place in future discussions of the evolution of pop culture was the 52nd episode, ”Jail Break.”  In addition to pointedly and thoroughly burnishing the show’s credentials as queer-inclusive and emotionally complex, it provided viewers with a beautifully-composed song-and-fight sequence, from the only one of the four main characters to have avoided a musical number until then:

The words of “Stronger Than You” are poetic and poignant, particularly these:

I am a conversation.

I am made

O-o-o-o-of

Lo-o-o-o-ove o-o-o-o-of

And it’s stronger than you.

(more…)

Interview for Bi Any Means

I sat down with Trav Mamone of Bi Any Means to discuss my book, my new vlog, disability activism, atheism, and more. You should take a listen if you get the chance.

Listening through the podcast I realized that I accidentally used  an expression I’ve been trying to eliminate from my vocabulary because of it’s ableist implications. A good reminder that even people who care about these issues make mistakes and it is up to us to make amends when we do. To those who were hurt, I apologize and endeavor to do better in the future. Mea Culpa. I’m sorry.

Teal Haired Ania Cartoon blushing and looking apologetic

I’m sorry

As such please note: CN for use of Insane as a pejorative.

Listen to the Podcast Here