Leaning Into Our Softness: In Conversation with Ayla

© Shot by Zoë Schulz (@studiozo_) 

“I want other disabled people to realise that there shouldn’t be any shame attached to something that’s a part of you that you didn’t choose. It’s a large part of who you are, so why not be proud of it?”

Ehlers-Danlos Syndromes (EDS) is an often complex and misdiagnosed condition. Along with symptoms such as hypermobility, joint pain, fatigue and more, many also feel shame and attempt to hide their disability. This is why I met up with Ayla, disabled self-portrait artist and photographer, for a photoshoot just around the corner from where she lives in Brighton. 

We spoke about the way that EDS has affected her, how ableism shows up in parts of her life and why she hopes more disabled folks can let go of the shame and stigma too often learnt from the society around them.

Hey Ayla, thanks for chatting with me! Could you share a bit about yourself? 

Hey! So I’m a disabled self-portrait artist & photographer from Brighton, who has a love for old cartoons & games.

Can you share a bit about your experience with EDS? 

So for me, it’s something that’s affected me most of my life, but I wasn’t diagnosed until early 2022. I didn’t think I could have it as I thought I was “stiff,” until I saw a physical therapist who noted how overly-flexible my joints were. They even joked my neck is like the exorcist!

My physical therapist mentioned the possibility of EDS and I looked it up. It finally made sense how being referred to all kinds of specialists for different things could all have been caused by EDS.

Some (not all) of the symptoms I have include: subluxations & dislocations, chronic pain, cervical instability, hiatal hernia, fragile skin, fatigue, dizziness, chronic migraines, disc degeneration, and food intolerances. I now walk around with a cane as my joints are unstable and make me prone to tripping.

What are some of the biggest challenges when it comes to EDS?

Receiving the right healthcare. Currently, there isn’t any sort of care pathway for those with the most common types of EDS. We’re typically just left to figure it out for ourselves, when really we need a specialist who can oversee our care across many areas.

There’s also not enough education on it in the medical field. I tend to know more about EDS than most specialists I see, with some not having an understanding of how a genetic condition of the connective tissue affects everything. 

I had a neurologist recently who admitted they have no clue how EDS affects you, but refused to acknowledge how it can manifest neurological symptoms/conditions.

What does allyship to the disabled community look like to you? 

For me, allyship with the disabled community is listening to us first and foremost. We’re often talked over and ignored, with people trying to speak for us. 

Stay educated and acknowledge that disability can affect everyone differently. Even two people with the same condition can have two completely different lived experiences. Some disabilities are dynamic, meaning the symptoms and severity can change from day to day.

Use your voice as a non-disabled person to advocate for accessibility and inclusion. Disabled people are often an afterthought, so try to be the change that not only includes us, but welcomes us into those spaces.

Is there anything you’d like to share about your experience with ableism? What role can we all play in calling this out? 

My first real experience of ableism was in the workplace, which came from my manager and HR as they didn’t want to make adjustments to do with my disability. I was told “This isn’t a hospital ward, we can’t babysit you,” and I was pushed to quit.

Unfortunately, this isn’t an isolated event. The majority of disabled people I know who’ve worked have also faced discrimination and have been pushed to quit or fired. So many disabled people have to lie that they’re healthy to even get a job, as we know that employers don’t want to take us on and make adjustments for us.

What I will say is it’s important to amplify other disabled people’s voices so that we’re centred in the discussion. Try not to drown us out. Listen to the hardships we face.

Small things that help could be pointing out harmful ableist language that’s still normalised today and calling out inaccessible events.

The shoot focused on capturing your disability in a positive light, leaning into it not away from - why is this important to you and what does this look like in other parts of your life? 

For most of our lives, we’re conditioned into thinking that having a disability is something pitiful, something that we should feel sorry for and look down on others for. That those who are disabled should “Just get on with it,” in the fear that otherwise we’ll look weak.

When my health started to deteriorate more in early 2021, I followed other disabled accounts on Instagram who talked about their lived experience in a positive light. It made me realise a lot of these preconceptions about disability are outdated, and I can live a fulfilling life.

Before I started using my walking stick I would often have falls and trip over a lot in public. My right leg has a habit of falling asleep. 

When my hip was subluxations in late 2021/2022 I started using a random walking stick I found in my house, that was made for my great-granddad. I noticed how much easier it was to walk out of the house with it. I had medical professionals telling me to “not rely on it” and try to put me off of it. This did lead me to feel some shame around it.

My hip got a lot worse in the middle of 2022 so I decided to buy my first one. Ever since I don’t leave the house without it. It’s given me more freedom and less anxiety. It’s only been a positive to me.

I want other disabled people to realise that there shouldn’t be any shame attached to something that’s a part of you that you didn’t choose. It’s a large part of who you are, so why not be proud of it?

Follow Ayla on Instagram