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Traumatic Brain Injury

How Inclusive of Brain Injury Is Climate Action?

Personal Perspective: Inclusivity demands systems that support functionality.

Shireen Anne Jeejeebhoy
Shireen Anne Jeejeebhoy

Inclusivity allows people with brain injury to participate in climate action. Inclusivity lets us contribute to our planet’s health and our collective health. It says we belong in society and can participate alongside the abled, even after injury has shut us away from the usual social norms.

Last year, a confluence of my failing natural gas appliances and governmental loans, grants, and rebates flung me into an unexpected retrofit journey. I learned that houses come with EnerGuide Ratings and government-funded retrofitting exists for clean tech. What was financially impossible for someone in my situation had become feasible. In fact, I had less financial ability to replace my natural gas appliances with natural gas because that would’ve been 100 percent out of my lean pocket. But I wasn’t sure about the practical feasibility. Would my pre-brain injury renovation experience be enough to endure 21st-century retrofitting?


Two boulders rolled into my retrofitting path.

It’s an axiom that those in the forefront of any innovation have deep pockets. I didn’t anticipate how people wealthy and healthy enough to adopt heat pumps, solar panels, and to convert to electricity from natural gas would be less concerned about managing power usage and budgets than someone like me. Only with wide or government-funded adoption does clean tech become affordable; only then do budget and health concerns over allergens, viruses, volatile organic compounds, and such emerge into the retrofitter’s consciousness but not without conflict with the first people to bring it up—people like me.

The second boulder—my brain injury—slammed into the first.

I had the knowledge but not the energy and processing speed required to deal with a train of unpredictable changes, delays, self-learning requirements and the downplaying of pandemic proofing.

Think of it this way: a renovation-experienced person like me can bend with the inevitable schedule changes and government delays, and snuffle happily along, self-learning about counter-intuitive heat pump technology and how to track consumption and generation power usage data; but neuro-fatigue, flitting memory of new learnings and having to self-learn, different billings, and unpredictable changes and delays not only frustrates, but also impairs functionality and interrupts essential health and daily routines.

Knowledge does not equate to can-do when you have a brain injury.

Routines ensure that a person with brain injury remains as functional as possible. An injured brain needs:

  • routines to accomplish priorities;
  • rest for one or more days before an event to ensure adequate energy to manage the event;
  • recovery days afterward to, well, recover energy;
  • advance notice because processing speed is too slow to adapt to sudden changes, and memory doesn’t work in real time, even less so under pressure and with new knowledge.

So how does one stay functional when retrofitters and utilities can cancel the day of; commit only to a start week; and/or provide uncertain timelines for projects? People, companies, and utilities may state that they’re committed to equity, empowering everyone including the disabled to take climate action, but that doesn’t mean they know how or will when informed.

You’re probably thinking that everyone has to deal with no-show contractors, so how’s it different for us? Before my brain injury, I didn’t have to rest up before the scheduled start. Resting up means building up energy over one or more days beforehand by cutting down daily activities to absolute essentials: eating, sleeping, and health therapies. Before my brain injury, I planned the work, predicted possible problems, kept working, and adjusted on the fly to snafus. Now, like most with brain injury, planning ability eludes me; I require help with adjusting my routine to maintain my functionality: feed myself, do chores, shop, do home neuro-therapies, attend medical appointments, practice daily reading, and write. When contractors abruptly change schedules or governments miss deadlines by months, we become non-functional. Weeks pass as we struggle to decide what to do and then act. A support person speeds up our impaired decision-making and ensures that we don't lose our neuro-therapies to neuro-fatigue.

Preparation, scheduling, and adjusting to new routines during and after retrofitting takes energy—a lot of energy. With neuro-fatigue, waiting for contractors to show means doing nothing or at most watching TV. An injured person cannot keep themselves productive while waiting because it takes energy away from being able to monitor the retrofitting.

My annual NaNoWriMo novel writing went by the wayside during my retrofit year. I lost that much of my functionality.

Several times, I’d rest up, prepare the morning of for a scheduled start, and wait, only for the retrofitter to cancel half-an-hour after they were due and reschedule to a tentative date. I’d wasted my energy on preparing for their arrival and had to extend my rest time until they showed. I'd be left without the mental space to decide what to do, or to write or practice reading—the things that give life meaning.

Although it may seem normal for renovators to not show up, or leave midway, good contractors know how to manage the work and how to devise schedules that account for snafus, and they know that change orders must be met with financial and scheduling penalties so that those down the line don’t suddenly have their schedules blow up. Unfortunately, traditional HVAC companies have so dragged their feet in learning about air-to-air and air-to-water heat pumps, unlike their Scandinavian and European counterparts, that people are more likely to have no choice but to deal with companies that manage contracts poorly and allow change orders by some to negatively affect everyone else down the line.

Societal education would help mitigate this profound disruption to our functionality. But I’ve found that people generally nod, saying they will do better, as they continue to provide an ever-shifting schedule that wearies and disrupts. A person with brain injury must thus have someone who can think for them, has good organizational and planning skills, keeps in touch with them daily, and is easily accessible by phone or text. With such support, they can stay functional, retain mental space for therapies and priorities, and avoid meltdowns as their brain overloads.

Copyright ©2023 Shireen Anne Jeejeebhoy

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