Sunday, February 9, 2020

What Is a Capacity Shift and How Does It Relate to Disability?

Last week I posted about capacity shift on Facebook, in relation to the most recent chapter of my middle grade novel, We Belong.  I stated simply:

"We live in a very all-or-nothing 🌎 where disabled people are expected to either be able to do things all the time or never at all.

It feels kind of groundbreaking as a writer to have a chapter called "Sometimes, I Can't" that is, essentially, all about capacity shift."

The response I got was unexpected.  Several people (both disabled and nondisabled) commented to say they had never heard of the term and didn't know how it related to disability.  I shared subsequently about hearing the term for the first time in May of 2019 from A.H. Reaume.

By this time, Tara and I were both convinced a further discussion was needed regarding capacity shift and how it relates to disability.  So, we decided to interview each other on the subject and share it with you:

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What is a capacity shift?

Tonia:  In simple terms, I’d say that capacity shift means a disabled person’s ability to do tasks is not always the same.  Depending on inside or outside factors, our ability to do certain things can change - sometimes at a moment’s notice.

Tara: A capacity shift is a phenomenon where a person's ability to perform a physical or cognitive task can shift along a spectrum. On one end, the task is easy or doable. On the other end, the task is physically or cognitively painful and / or impossible to do based on any number of internal or external factors.

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What diagnoses / conditions do you notice your capacity shift the most?

Tonia:  I notice capacity shift most with regard to my CP and also C-PTSD.

Tara: I notice it across most or all of my diagnoses. My capacity shifting feels most intrusive with my subsequent brain injury.

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What are some factors that can influence capacity shift?

Tara: With CP, the big factors for me are cold weather, anxiety and fatigue.

With my subsequent brain injury, my capacity shifts due to noise, fatigue, and multitasking, to name a few.

[Image: Outdoors, a picture of countless snow-covered steps in the middle of winter]


Tonia:  CP-related factors: Cold weather is a huge one.  So winters are difficult in the Midwest.  Anxiety (and other strong emotions) can also make it difficult to move (because strong emotions trigger spasticity.)  Access barriers.  (If I am trying to surmount these, it’s difficult to speak at the same time.)

Trauma-related factors:  Sudden and unexpected or unpredictable stress.  Anniversaries of trauma (some are worse than others.)  These can impact my ability to move and even speak.

Tara: Ooh, yeah! I do notice my capacity shifting due to mental health issues as well. However, these shifts have happened ever since I was very young. And I don’t have a lot of experience in allowing myself space to shift, instead of just shutting down.  It’s a learning process, being able to recognize these shifts as legitimate.

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When was the first time you experienced a capacity shift?

Tara: The first time I recall clearly having a capacity shift, I was 14 years old and out of town on a school trip for several days. Each day required lots of standing and walking (activities I could normally do fairly easily,) and by the end of one of the days, I was severely nauseated and in tears due to the pain in my leg.

Tonia:  I don’t know about the first time, but the most memorable time was three years ago.  I was surrounded by multiple access barriers and ended up brutally exhausted.

(By brutally exhausted, I mean I could barely move, or speak upon arriving home.)

I was in pain (my arms, ribs, back) for two days.  My legs were too heavy / exhausted to move.  It took eight days to recover my stamina.  I was taking 2 naps a day.  To this day, I am sure it changed my CP.

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How do people react to your capacity shifting? 

Tara: That is a loaded question! Most often, people minimize it by saying something like, "That happens to everyone - it is no big deal. Push through it." And while I understand that, yes, pain and fatigue are universal, the ability to push through is not.

Occasionally, I will be accused of not caring or not paying attention or not listening. This usually happens when I'm filtering a lot of different input, and my affect becomes flat and / or I'm asking for people to repeat things a lot.

And sometimes, it's implied that I am lazy or faking. This happens if I'm sitting somewhere, and standing implies productivity.

Tonia:  Oh my gosh, yes!  The idea that we must be faking is huge!  Never mind that nondisabled people cannot always do the things they can do on the regular either.  (Things like illness, injury, exhaustion are all seen as valid reasons why nondisabled people cannot function at their usual level.)

The truth is, disability is not a static condition.  But people around us react like it should be.  That if we can do something in one set of conditions, we should be able to do them in all the conditions ever.  But that is just not the case.

When we instituted boundaries and insisted I was no longer coming to inaccessible places in the dead of winter, it was confronted with anger.  It was said that:  “It’s a little hard and Tonia doesn’t want to do it anymore.”  It was also suggested that I get PT and Baclofen injections.

Another time, I was struggling to get into a car, parked inaccessibly.  I was trying to figure out where to hang on and how to get myself in.  Finally someone offered a hand, but with it, said, “Just tell me if you need help!” But I couldn’t, because all of my energy was split between keeping my balance, staying upright and trying to navigate access barriers.

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How would you like them to react?

Tara: Calmly and with concern if it's warranted, ideally.

Tonia:  You are the best at reacting to my capacity shifts.  One morning, I memorably, did not gauge the distance to the grab bar coming out of the shower.  I was stuck nearly falling, and all I could repeat was, “Uh-oh!”  You turned, and immediately extended a hand to me for stability.

Similarly, once in the middle of a hideous emotional flashback, all I could do was sit in the middle of the kitchen.  I managed to tell you, “I can’t do dishes,” and you said, “You don’t have to.”  You said you’d do them and encouraged me to go do some self care, basically.

***

Let’s talk about the need for rest and capacity shift.

Tonia:  Oh gosh.  Rest is so vital.  It doesn’t really stop capacity from shifting so much as it is 100% necessary for our recovery.

Tara: Rest is hugely important in connection with capacity shift. A capacity shift is really a body or mind hitting or exceeding its capacity for functioning.

Generally, as people with disabilities expend more energy completing daily tasks, we need to rest more often and for longer periods. (People with CP use 3-5 times the energy of nondisabled people to complete the same task, for example.) Outings require more physical and cognitive energy from disabled people - there is more planning, more explanation, more emotional labor in the face of ableism. So, often, even an enjoyable outing exhausts us. And due to the extra energy expenditure, we can spend days or weeks recovering lost stamina.

We do our best to prioritize rest. We nap when we have an early wake-up or a day off, or even just lie down.

***

How does a capacity shift feel physically and / or cognitively? How does it feel emotionally?

Tara: Physically? It can feel like sharp or intense pain. Fatigue is not regular tiredness, it can feel like the flu (nauseated, too tired to move or speak).

Cognitively? It feels like my brain is contorting itself. My thoughts feel like forks jammed into a garbage disposal. Like an engine overheating. Thinking is harder. Speaking is harder. Attending is harder. I can become mute.

Emotionally? Honestly, it's terrifying. People rarely, if ever, understand. Talking about it is essentially opening up for abuse, so I generally don't. So, I'm often quietly struggling.

Tonia:  Physically, it feels daunting.  Exhausting.

Cognitively, it’s so confusing.  The first major time it happened to me, it threw me into a bit of a tailspin doubting myself and asking all of these questions like: “Am I out of shape?”  “What’s wrong with me?”  “How can I not be able to do X?  I’ve always been able to do X.”

Emotionally, it’s really isolating.  And if I’m faced with abuse while it’s going on, or while I recover from it - that makes the isolation and self-doubt even worse.  When capacity shift happens to a disabled person, we need support and understanding.

Have you experienced capacity shifts related to your disability?

Let us know in the comments.

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