On Disability, Suffering, and Euthanasia

Are there people whose level of disability places them into a category beyond hope? It's easy to think the answer depends on the answers to some other questions. What about that theoretical person I mentioned who has no neocortex, no possibility of conscious thought? Is it our mind that makes us human? Our genes? A thing called a soul that some people believe we have and others don't? But eventually I realized this line of questioning was the wrong approach entirely. It's not a matter of finding that dividing line between human and not human, worthwhile and hopeless, valuable and expendable. The minute you allow yourself to think that way, you've missed the point. You get hung up wondering where that dividing line is rather than seeking a solution that would make it moot.

Blogging while disabled: A quick cross-post from my social media

I woke up this morning. This may not, in fact, sound like much of a surprise. I am obviously not in a coma, so technically speaking I wake up every morning. However, to give you some idea of what I mean, let me detail how I woke up yesterday. Yesterday, after drifting in and out…

Neurodiversity, Limitations of the Social Model, and Outliers, part 2

The search for a cure or prevention should never overshadow the need for acceptance and accommodation of people already living with those conditions.

Welcome!

Welcome, new readers. Your support is greatly appreciated. Please be advised that, due to the way my brain functions, my typical pattern of online presence consists of 1-5 days of intense activity, followed by weeks or even months offline. I am trying to learn to engage on a more regular basis, but my disabilities don't…

Reblog: I identify as tired — Chavisory’s Notebook

This brilliant post describes my life almost perfectly. https://chavisory.wordpress.com/2019/05/27/i-identify-as-tired/ I started wondering something explicitly for the first time recently, and that is: How many autistic kids who fly under the radar for years, or forever, present primarily to non-autistic observers as exhausted?I wonder this as I continue recovering from a recent production, and my main…

Yet Another Essay About Chronic Fatigue

So, here’s the thing about living on the margins of disability with chronic fatigue and brain fog of uncertain etiology (i.e., unexplained symptoms). Have you ever had a bad cold or hay-fever and you had to take a big honkin’ dose of Benadryl or Nyquil one of those other medicines that makes you all spacey…

A Letter to My Body

This is a really valuable reminder. It’s equally important to remember that 1) “behavior” isn’t always voluntary and 2) even involuntary actions have reasons and causes that need to be understood and respected.

growingkidstherapy

A few weeks ago, my client, Ethan, came in for his session very upset and agitated.  We began our lesson and tried working through his irritation to no avail. Ethan was becoming more and more distraught. So, we took a short detour from our lesson to discuss the issue. I am a big stickler for doing lessons in RPM sessions – it is part of how RPM works – engaging the brain and then body in cognitive lessons. However, sometimes the situation calls for a change in plan and this was one of those days!

Elizabeth:  Let’s break for a moment Ethan. I can see you are really upset. What’s going on?

Ethan:  I AM UPSET BECAUSE I AM NOT KIDDING AROUND AND I CAN NOT HELP IT WHEN MY BODY ACTS OUT.

Elizabeth: Let’s try writing a letter to your body.

DEAR BODY,

I DO NOT LIKE YOUR BEHAVIOR TODAY!…

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Being tired is not the same as fatigue.

Yes, this. Very much this.

Ballastexistenz

Being tired, even being exhausted, is not the same as the kind of fatigue that people with chronic illnesses are dealing with day to day. And I knew this, intellectually. But after going on steroids to treat adrenal insufficiency, and getting some stamina back, it’s like a revelation.

I haven’t really had much in the way of clinical fatigue since I got on steroids. I only feel it on my bad days, and my bad days aren’t all that bad compared to how they used to be.

I do get tired. I get exhausted. But even at my most exhausted it’s not the same.

Fatigue, when talking about in a medical sense, is more than exhaustion. It’s a sense that everything is drained from your body. You don’t just feel tired, you feel sick. Your body doesn’t work right.

I wish I could just upload the feeling into people’s heads…

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Interlude – “special” people

Sometimes I see parents, educators, and others who love and work with disabled people (and especially disabled children) refer to those people with disabilities as "special" in some religious or spiritual sense. This notion has been around a long time: there is evidence that in many cultures and faiths, dating back beyond recorded history, people…

It’s Blogging Against Disableism Day!

Thanks to Dr. Nightengale of Samarkand for reminding me. I didn't think of a specific post for today, but in a way, every time I write a post on this blog, it's an instance of blogging against disableism. I also have in mind a post or series of posts I wanted to write today anyway,…