Series Part 2 of 4: Not All Disabilities Are Visible

In This Series: 1: Chronic Illness | 2: Dynamic Disabilities | 3: Outdoor Access | 4: A Day In The Life

Part 2: Beyond the Visible: Understanding and Supporting Dynamic Disabilities

By: Chelsea Matherly, Spoons of Salt

The world of disability is incredibly diverse, encompassing a wide range of conditions, experiences, and challenges. While we’ve made significant strides in raising awareness about obvious disabilities—such as those requiring the use of a wheelchair, walker, or cane—a critical conversation remains largely in the shadows. This is the conversation about dynamic disabilities, conditions where symptoms fluctuate from day to day, and even hour to hour.

We’re talking about conditions like Multiple Sclerosis (MS) which affects the brain and spinal cord, Lupus where your body’s immune system attacks your organs and tissue, Postural Orthostatic Tachycardia Syndrome (POTS) where your heartrate suddenly increases and you become dizzy and lightheaded, Ehler’s Danlos Syndromes (EDS) that impacts the strength and elasticity of skin, bones, joints, and blood vessels, Myalgic Encephalomyelitis/Chronic Fatigue (ME/CFS) that results in chronic fatigue and muscle weakness, Long- COVID that results in a variety of symptoms, and so many others where one day you might feel great, and the next, you’re completely wiped out.

Dynamic disabilities are unpredictable and hard for others to understand. When a disability isn’t always visible, people can be quick to judge. They might think you’re faking it or exaggerating, and that can be incredibly frustrating.

The Challenge Within Our Own Community

Here’s the tough part: sometimes this judgment comes from within the disabled community itself. I have experienced it. A person with a visible disability, like someone using a wheelchair, might act as if they have the “right of way,” not realizing that the person standing next to them is also disabled, and might be having a flare, needing assistance— you just can’t see it. Maybe they have chronic pain or fatigue that’s just as debilitating. Comparing the severity of our disabilities rarely does any good. It’s a powerful reminder that our shared experience should unite us, not divide us. We, as a disabled community, must do better. We need to stop assuming that a disability must be visible to be valid. The “right of way” isn’t just for those of us with obvious mobility aids; it belongs to all of us navigating life with a chronic health condition.

Why We Need Awareness

Raising awareness in the community and among medical providers about dynamic disabilities is so important. First, it helps combat the stigma. When we explain that our symptoms can change, we create a more understanding world. We can also push for better, more flexible accommodations at work and school, like allowing for remote work on days when you’re just not up for it.

Most importantly, this conversation can help us build a stronger community. By validating the experiences of people with dynamic disabilities, we can create a more supportive network. We can be a community that understands that some days are better than others and that our abilities aren’t always the same.

The next time you see someone who looks fine but is using an accessible parking place, or someone who seems okay one day but is struggling the next, let’s just give them the benefit of the doubt. Let’s remember that disability isn’t always a static thing. By looking past what’s visible, we can all do our part to make our community more accessible and compassionate.

In This Series: Not All Disabilities Are Visible (4 parts)

Authors: Sarah Rupp and Chelsea Matherly, Spoons of Salt (SpoonsOfSalt.org)
Source: Southeast ADA Center (ADASoutheast.org)