WHAT DISABILITY PRIDE MONTH MEANS TO ME.

July is Disability Pride Month, and I would like to start by first sharing with you the meanings behind the parts of the Disability Pride flag! It was created by Ann MaGill, with the input of other Disability activists. Flags can raise awareness and are a symbol of solidarity, pride, and acceptance, and the Disability Pride flag is no exception.

The original flag featured brightly coloured zigzagging stripes over a black background. The zigzag represented how people with disabilities have to manoeuvre around all the barriers they face. However, when viewed on the phone or a device, the design prompted symptoms in individuals with visually triggered disabilities!

Magill refined the visual elements with these suggestions in mind. The new version straightened the stripes and muted the colours. The stripes were also reordered to accommodate people with red-green colourblindness.

The black background is to mourn those disabled people who were killed by negligence, suicide, rebellion, illness, caretaker violence, and other ableist causes like institutionalization and covid 19.

The different colour stripes represent different types of disabilities:
• Red – Physical Disabilities.
• Gold- Neurodivergence (+ intellectual/developmental Disabilities)
• White – Invisible and undiagnosed Disabilities.
• Blue – Emotional and psychiatric disabilities, including mental illness, anxiety, and depression.
• Green – For sensory disabilities, including deafness, blindness, lack of smell, lack of taste, audio processing disorder, and all other sensory disabilities.

The parallel lines show how each part of the disability community comes together and supports each other side by side.
The diagonal line that they follow represents how, as disabled people, we often have to find work-arounds for things that are not accessible. Instead of being in a straight line, it shows how we often have to get creative about how we get to where we are going accessibly.
This new version is the more accessible one; but it has all the same deep and lovely meaning behind it.

Let’s now talk about my kind of disability: dynamic. The severity of my autoimmune illnesses varies over time. Flares of symptoms might last weeks or months. My musculoskeletal/nervous pain could be excruciating one week and merely a minor ache the following. My autoimmune diseases’ symptoms can be excruciating for months and then subside for a similar period of time. I have a unique identity that eludes the conventional, strict definitions of disability, along with many other handicapped people: I’m dynamically disabled.

The term “dynamic disability,” as opposed to “static disability,” (a disability with severe and permanent limitations that is unlikely to improve with time) was made famous in 2019 by Brianne Benness, the host of a chronic disease podcast. Many of the disabled persons Brianne has met with, she says, described “feeling like it wasn’t fair to self-identify as disabled, to take up space in disabled communities, specifically because their experiences fluctuate so much.”.”

We are trained to believe by mainstream culture that having a disability is a binary and fixed thing—that its symptoms are always there and obvious. With our perception of disability evolving throughout time, there are still a lot of disabled people who do not live in this reality. The experience of having a chronic illness is closely related to being dynamically disabled. Many persons who live with such illnesses have changes in the severity of their symptoms, whether they have Lupus, Fibromyalgia, Rheumatoid Arthritis (RA), Inflammatory Bowel Syndrome (IBS), Endometriosis, Myalgic encephalomyelitis (ME), Myasthenia Gravis, Multiple Sclerosis (MS), or any other number of undiagnosed ‘mysterious’ ailments. We may occasionally be able to leave the house, go to work, cook, and clean while still having the stamina to hang out with friends later; sometimes we won’t be able to get out of bed, or leave the bathroom, for days.

Society may lead us to feel that we are not really disabled in this changing environment because some days may be better than others. People with dynamic diseases frequently battle with imposter syndrome and may wind up doubting or downplaying their pain or symptoms. I personally have a strong sense of imposter syndrome. I know I have a disability, especially when a flare is in full swing, but another part of me doesn’t think I should be entitled to accommodations or even have the right to call myself disabled. Is my identity in danger if there are certain days when I do feel “fine“? Comments from others stating that you “look fine” or “were okay yesterday” might socially encourage this issue. When we, dynamically disabled people, show up without our mobility aids, there is an assumption that we are now healed. This kind of thinking isolates people with chronic illnesses and encourages them to perform wellness in public. As a result, our limitations worsen, and we are left in even more suffering.

People who are dynamically disabled may find it challenging to navigate the workplace in particular. Many individuals with dynamic impairments have concerns about the challenge of what ‘productive‘ work looks like, experiencing burnout as a result of fears about being open about their fluctuating symptoms in unsupportive workplaces. Individuals with dynamic disabilities are faced with a dilemma over when to “reveal” their disability to their employers. Many people don’t reveal their disability until after they’ve agreed to a contract, which raises questions regarding how they will be able to come out as disabled once that time has passed. Many people with these disabilities seek out counselling for anxiety and feelings of shame often due to unhelpful management styles or unsupportive workplaces.

Due to the prevalence of hostile workplaces, it can be difficult for many disabled people to find employment that is compatible with their abilities. As a result, unemployment rates among disabled populations are greater. This is the point at which a lack of knowledge about dynamic disability becomes seriously risky. Most disability benefits systems around the world evaluate applicants based on static disabilities, failing to account for the fact that many disabled people can have varying degrees of activity from week to week or day to day. Because a “single active day is somehow ‘proof'” that they should be permitted to work full time, those who have experienced periods of relative stability run the risk of having their benefits terminated or being ineligible to get them in the first place.

Although our illnesses may change throughout time, the fact that we are disabled remains. Certain days may undoubtedly be better than others, but only after invisible effort has been done. I have to do some form of exercise every day, take all my medications, and say no to things I really don’t want to say no to (parties, jobs) in order for my body to recover from a flare. Even when symptoms are well managed, we still need accommodations to ensure that we have time set aside outside of work, class, or social activities for self-care. A life impacted by dynamic disability is a transformed one that requires compassion, empathy, and understanding from both the individual and, most importantly, the community.

Society still has a long way to go in comprehending disability. It is essential that non-disabled people understand the dynamic nature of many disabilities, among many other things. One method to accomplish this is by learning more, being curious, and asking your disabled and chronically ill loved ones how they really are, particularly if they always say that they’re ‘fine‘. Remember, too, that it’s crucial to avoid adding to our burdens; persons with dynamic disabilities are frequently left with the responsibility of explaining the changeable nature of their conditions. This may be acceptable to some people, but many find it taxing. If the nature of dynamic disabilities were understood on a wider scale, there would be “less pressure on us to educate” others.

Maybe if people understood these complex experiences, we wouldn’t feel so bad for needing modifications. Maybe then we wouldn’t be frightened to assert our identity and establish community with other disabled individuals going through the same things. Being believed is a crucial component of acceptance, which is why I find the word “dynamic disability” to be so important. It refers to being believed in all of our complicated, painful, exhausted, dull, and joyous realities. I may feel better on some days while feeling worse on others. This needs to be understood by everyone so that the tougher days can go by as gently as possible.

Disabled advocates such as myself teach people to embrace diversity, foster inclusion and create a world that values and respects all people, not just a select few; because disabled people should be accepted, valued and respected. There should be no apology or shame in living with disability, illness, or pain.

P.S. I would like to thank everyone who supported my initiative by either purchasing a hoodie or t-shirt or by spreading the word. It means the world to me that you took time to support & wear your items with pride whilst spreading the word about lupus.

Kindly share this with a friend or family member, and let’s keep the awareness going! Let’s learn, educate, and empower and, in so doing, create a society that’s more understanding, inclusive, and empathetic! Thank you, and till the next post, love, and light! 💜