Dialects of Invisible Disabilty

I have had a tough week. As I want to share both my experience as a designer as well as my lived experience with chronic pain, here is a chance to explain what this experience can feel like. My hips keep locking, my lower back muscles are seizing and my over-all pain level is very high. This is called a 'Flare' which is when all or most of the symptoms flare up and take over. I need more frequent breaks and each time I pause, I have been thinking about the unique language that I have learned after 10 years of dealing with these conditions, making notes over the days it takes to come out of the flare.

This morning as I struggled to get out of bed, and slowly, painfully made my way to the kitchen I had to shut my eyes to the toys scattered on the floor. I’m barely moving and have no hope of kicking them to the side or crouching down to pick them up. Sure they are a trip hazard, but I can't do anything about that which is frustrating. Today is the type of day that I should use a walking aid, but my current home makes navigating the hallway difficult with a rolling walker.

I would like a cup of coffee, but the simple task that on a good day I barely register because its so simple and automatic becomes a drawn out process. Each step to get a mug or fill the reservoir with water, takes long enough for me to consider the next step. But here's the problem with high pain levels: 'Brain Fog'. In the tiny distance between the coffee machine and the fridge, I have forgotten that I’m looking for milk. I realize that the coffee machine is on, but sometimes forget to push the button and wonder why its taking so long. I have even forgotten to put the mug into the machine. Of course throughout the day this inability to complete thoughts can have much bigger consequences than a simple cup of coffee.

In the introduction to this blog I mentioned that disability is a spectrum. People diagnosed with the same condition can experience it in very different ways, and the same person can have very different experiences from hour to hour or day to day. The hardest part of this is the unpredictability ... do i need a little support or a lot? Can I handle doing a small task or will that exhaust me?

We use the term 'Spoonie' to refer to the idea that you only have a certain amount of energy allocated to you each day or week...and chronic pain tends to sap that energy faster. The analogy I prefer is of a phone battery.

Imagine a healthy person starting each day 'fully charged'. A person with chronic conditions may only ever get 50% on a good day, and during a flare will only have 10-20% at best. This clearly limits what you can achieve during the day without collapsing. In my case pushing too far will lead to migraines on top of the nerve pain I experience. The effects accumulate, so what can start of as a productive morning can collapse into inertia.

Hard choices are made. Do i feed myself or shower? Do i answer some emails or try to do the dishes? How do i care for my child?

First Chart shows a generic idea of pain levels throughout the day. The second chart shows how pacing can impact these pain levels and therefore ability to complete tasks.

This brings us to 'Pacing'. Taking frequent, planned breaks to stretch out energy levels. Understanding that you shouldn’t plan more than what you can handle per day, because that will take away energy you may need for following days. This constant need to evaluate, plan and pause makes everything take longer. At the beginning before I understood my new limits I would just power through- lacking the patience to realize the pain signals were a warning. Its not that I couldn’t do more...its just that now there is always a cost. Pacing allows me to be more consistent. Trying to do too many things and wiping out my energy reserves resulted in very long recovery periods. For example the last time I truly cleaned my living room and kitchen, in one session, I was unable to get out of bed or walk for 3 days. That was not a worthwhile trade. Too many tasks over consecutive days will lead to a week or longer flare.

And so I have learned something called 'Active Rest'. Sounds like a contradiction right? But occupational therapists have taught me that this is a companion to pacing, placing just as much emphasis on being able to recharge. Another aspect of this is 'Sleep Hygiene' which I found really strange when an occupational therapist told me about it. The problem with many chronic conditions is you tip over a threshold of pain where you are completely drained and exhausted; but in too much pain to sleep. Ironically the sleep is what you need to allow pain levels to reduce. How much pain are we talking about? Since having a child I can confidently compare (in my case) back and hip pain flares to un-medicated labor pain. Imagine trying to sleep through that!

So how does this all relate to interior design? There are some guiding principles I always use when making accessible spaces.

1) Are there points of rest? For example can I take a pause and sit or lean against a sturdy support to take a break when moving from one area to another?
2) How easy is the space to navigate? Can it be clearly understood by someone experiencing brain fog?
3) Are the materials selected durable, easy to clean, and non-toxic? (Many people have multiple health concerns not just disability) An easier cleaning environment conserves energy for other tasks.
4) Does the design consider a less frequent cleaning schedule? For example minimizing surfaces that can collect dust by selecting vertical design elements. See above.
5) Consider sensory impacts throughout the space. In many cases high pain means a higher sensitivity to sound, light and vibration. Creating a retreat to rest in can be helpful, however controlling glare, sound reverberation and visual simulation throughout your space will reduce the overall impact.

These are aspects that can feel very abstract but I will explain how Project Fresh Air has addressed all these issues throughout the home. As noted in the introduction, a holistic approach is required for a truly universal and accessible space.