Dynamic Disabilities

"A dynamic disability is a disability that tends to fluctuate in severity (pain, energy, etc…) in a difficult to predict manner. Those with dynamic disabilities are able to do certain tasks at one time but are unable to complete those tasks at another time."

-Instagram post by @joannanobanana

I’ve been searching for a term to use in advocating for the rights of people with chronic illnesses and chronic pain conditions. I think dynamic disability might be that term. I saw it on an instagram post and it makes a lot of sense. It is different from other disabilities in that it changes regularly. That makes it a totally different kind of situation than what we would normally define as a disability. For instance if someone has a prosthetic limb they have a disability. They will be limited in some of the things they can do or they may need to do them in different ways. But for the most part, what they can and can’t do will stay the same from day to day. In the case of chronic conditions the things a person can and can't do can change greatly from day to day. This makes it different from classic disabilities.

Legally employers have to make reasonable accommodations for disabilities but what that means can be hard to determine. In the case of chronic conditions in particular we have just started trying to figure out what employees can expect from their employers. This is a conversation well worth having. In the 1960’s it seemed impossible to expect every building built in America to include an accessibility ramp and elevators, but now these things are fully expected in any new construction. We need to start exploring what things employers should do to accommodate chronic conditions too.

People with dynamic disabilities tend to be very good at certain things, things that can be valuable to companies. These traits are not universal to everyone with a dynamic disability, but they are fairly common. We are good at finding more efficient ways to do tasks. We typically have limited energy so the things we do, we tend to do really well. As a very mundane example, I can load the dishwasher in half the time as my husband can because standing and bending is hard for me, so if I’m going to do it I’m going to do it really efficiently.

We can usually imagine a number of different ways to do any given task. We develop this skill because of our changing abilities. When I look at a new task I usually can see about 5 different ways I could go about it, each with pros and cons. I then assess what my resources are on that particular day (since they do tend to change) and pick the best way for me to accomplish the task based on that. This skill is very valuable in problem solving situations and would be an asset worth having to an employer.

We are also motivated workers. We really want to work, we are just unable to under the current systems that are in place. Generally when people think of motivated workers they think of young adults hustling to get ahead in a career. That’s not what I mean in this instance. Here I mean that we desire to be working as much as we can be. We understand the value of having meaningful work and we miss that when we don’t have it. This does not mean that we are willing to sacrifice our health to work, but it does mean that if an employer creates a situation where we are able to succeed, we will be excellent workers.

We have a particular point of view that is becoming more common among customers. That is to say that life with chronic conditions is on the rise. This may be because humans are living longer due to better treatments for diseases or it could be for a handful of other reasons, but we do know that there are more people than ever living a long time with chronic health conditions. When you have employees that are in similar situations as your customers the company is better able to serve those customers.

These are just some of the reasons why people with dynamic disabilities are valuable employees. What are some of the ways employers could create better working environments for these employees? First, flexible hours. There is a mindset in the US in particular (this is already being challenged in many other countries) that 40 hours a week is the minimum that a person should work to be a helpful contributor to the company. This is challenging for people with dynamic disabilities. Part time work exists right now but nearly always at a much lower pay rate per hour than full time work. Closing that pay gap would go a long way towards helping chronically ill people to be able to work. If I can give you 20 good hours I should be paid half as much as someone who can give you 40 good hours.

For us it’s a big cost/benefit analysis. I’ll continue using myself as an example. My husband and I are (luckily) able to survive on his income. We can pay our mortgage, buy groceries, and even save a tiny bit each month. We are not able to afford many things that we would love to be able to do, but we can get by. For this reason I am able to decide when it is worth it to us for me to work. If I can get 20 hours or less of work a week then I can usually keep up with the things at home that are most important to us.

At 20 hours I can cook food, which is good for our health and saves us tons of money on eating out. I can participate in the house cleaning, although my husband still does more than his fair share of that. But being able to participate is important even if it’s not a fair split. If I can’t help at all with house cleaning my husband feels more like my caregiver and less like my husband, whereas if I can help at least some then we feel more like a team, just a team with different strengths. At 20 hours a week I still have energy to occasionally do other things, like a night out with friends, have sex, take a walk with my husband, etc… I know I won’t be able to do these things with the same frequency as my healthy peers but being able to do some things at least some of the time is very important to maintaining a good quality of life.

So for me the cost benefit analysis caps out at about 20 hours of work per week, at least based on the current status of my health. Even so, working 20 hours does take away some of my quality of life at home, in exchange for money and job satisfaction. So if I’m not getting decent money, or if I hate the work I’m doing, it’s just not worth it to us for me to be working.

Along the same lines in the flexible hours category is that employers can offer flexibility as to which hours I work. For instance, I know that my body works significantly better if I can keep my sleep schedule consistent. So having a job that sometimes requires me to be in early in the morning and other times requires me to work well into the evening or night is basically impossible for me. I’m thinking of things like retail jobs here. Most retailers could have something closer to a set schedule for their employees but they are usually unwilling to offer that. They want total flexibility from me in exchange for a pay rate well below a living wage in my state.

Offering consistent hours is one important piece of this puzzle for many people with dynamic disabilities. Another is offering some amount of flexibility within a week. I understand that this is a big give and take between employee and employer, but it’s important to at least think and talk about. I can get 20 hours of work done in a week but I might have a very bad day and need to do less that day and make it up on a different day. If my work is tied strictly to coverage like in most retail settings, this is impossible. But if I’m doing something that is output driven then so long as I can complete my work in a week it might not matter so much which day I do the most work during the week. I think this is possible for a lot of different jobs but currently many employers are unwilling to accommodate such things, especially for part time employees.

Accommodations for where we work are important too. If I can work from home I’m in an ideal situation as far as my dynamic disabilities go because I have control of my environment. But if an employer needs me to be in a specific location I may need a bit of extra help. For me that means a few different things. For starters I need to be allowed to wear comfortable clothing. I’m not saying I want to come into work in pajamas, but I can’t wear heels, and I can’t wear all form fitting clothing. I can still dress nice, but my clothes will be looser which currently makes them “less feminine.” I also struggle to sit in a normal way at a desk for long periods of time.

When I’m upright my blood pools in my lower extremities which causes all sorts of problems for me. I need a place to put my feet up, or at the very least a chair that allows me to sit in various positions. This sounds like a trivial thing but for me it’s the difference between functioning and not functioning. And honestly, there aren’t that many situations in which having a foot rest is truly disruptive.

Lastly, like many people both with and without chronic health concerns, I need some amount of ergonomics to my set up. I have problems with my neck in particular, so having screens at the right level is important to me if I need to stay at a workstation for any length of time. I think this should be a part of every employee’s experience. Nearly everyone faces at least some acute back or neck pain at some point in their lives. We could help that with very little money just by boosting some screens or buying better chairs from the start.

I think that our world’s experiences during the Covid-19 lockdowns has taught us that many more jobs than we thought could be worked remotely. These accommodations are not actually as impossible as we thought they were even a year ago. I hope we can start to make these adjustments to get all the people who want to work back into the workforce.