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How I Reconcile My Chronic Illness and Disability Identities

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I’ve spent several years working as a public health policy expert. During that time, I was advising the most respected medical journals and UN agencies in the world on one thing: how to influence governments so they protect and promote public health. Prevent chronic diseases. Improve health.

My focus was mostly on non-communicable diseases such as lung and heart conditions, diabetes and cancer, but I also worked on the links between climate change and health, malnutrition, vaccines, Universal Health Coverage (UHC), and antimicrobial resistance.

Behind the radio interviews and policy reports, there was me. A disabled woman. A migrant who was struggling with my own health. Undiagnosed. Dealing with chronic pain, neurological symptoms, and other symptoms no one had names for.

Later on, I joined a global disability charity to work on the implementation of the UN Convention on the Rights of Persons with Disabilities (UNCRPD). I was the voice of disability rights. The face of it.

I had a diagnosis by then. Ehlers-Danlos syndrome (EDS). Unpronounceable. Invisible in my case. Not if you looked closely, though.

I remember meeting a disability activist just before I started my job, and telling her about how great it was that a lot of people with chronic illness identified as disabled. “I have health needs, and it’s so important to talk about access to health care too.” Her face sunk. “We don’t talk about this. We use the social model, not the medical model.”

Weeks after this conversation, I remember thinking “Am I a bad disability activist? I support the social model, the idea that disability is created by environmental barriers, but is it wrong if I want some of my symptoms to improve? Should I be proud of my EDS? I’m proud of who I am – that includes me being disabled – but I’m not proud of EDS itself.”

As I write this with a stiff neck I can’t move, and ongoing TMJ that had previously led to a locked jaw (which means talking for more than an hour is extremely painful), I can feel that the answer is not simple.

“Fuck chronic illness” and “I’m proud of my disability” are two mottos I see next to each other on my social media feed.

But how do you reconcile chronic illness and disability identities?

Those two components standing shoulder to shoulder. Fist to fist. Rallying cries shout over each other on global webs.

“Am I weakening the disability movement by having health needs?” I thought one evening.

I worked on programs to help children get vaccinated. Polio was a case study I worked on and a lot of the narrative was about preventing illness. I think about the Vitamin A supplementation programs I worked on to make sure children don’t lose their eyesight. The seat belts to avoid accidents.

The reality is disabled people all feel differently about their disabilities/chronic illnesses.

And, if it took me a long time to realize that, I can now see that it’s OK.

Because the most important thing is our rights.

Disability rights.

I’ve met disabled people who are proud of their disabilities. Some others who aren’t proud, but not ashamed. Some who want to find a better treatment for their pain or neurological symptoms. Some who share both their moments of happiness and frustration.

Every disability is different.

Every disabled person is different.

Some have fluctuating disabilities. Some have disabilities that are the same every day. Some disabled people have underlying health problems, but some don’t. Some acquired disability as a result of their illness. Some have chronic illnesses that will bring new disabilities later on in life.

It’s OK if we’re different in our experiences and feelings.

What matters most is that we have rights.

Because whatever our ability, we have fundamental rights: the right to education, employment, health, love, friendship, joy, and sex.

In activism, there are always complex conversations about what the movement does or doesn’t promote.

Individual feminists feel differently about how women should be portrayed.

Some will argue women posing in sexy outfits is anti-feminist. Some will argue it is feminist — women should be free to do whatever they want.

Some will say women showing emotions is weakening the movement. Women need to show they’re strong, because they’ve been told they were weak for so long. Others would argue showing emotion is a strength.

Portrayal is important in its diversity: disabled people are strong, sad, resilient, happy, grumpy, majestic, selfish, sarcastic, brilliant, mean. Gay, Black, heterosexual, white, bi, trans, and many other things.

We’re not heroes or zeroes.

We’re human beings, with all the layers of light and darkness.

The disability movement must remain open to its multiplicity of experiences and feelings.

If you’re chronically ill, you’re welcome in the disability community.

This is what I needed to hear years ago.

I hope this will help you find your place in this beautiful community, because we have a lot to do to make sure our rights are upheld.

Getty image by Tamara Dragovic.

Originally published: January 18, 2021
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