By Khadija Gbla, as told to Carol Rääbus

Khadija Gbla always knew they were different from other kids, but the "D word" was never spoken in their household. 

As a black, femme-presenting refugee from Africa in Australia in the early 2000s, Khadija says their mother didn't have capacity to see the reasons for why her daughter was "odd" and not like the other kids.

"She had no room for disability. It's a luxury," Khadija explains.

But years later when Khadija's son was diagnosed with autism and ADHD, it led to the realisation for Khadija that there were reasons why they were the "odd one", and their own diagnosis of autism and ADHD soon followed.

Khadija lists their diagnoses — fibromyalgia, myalgic encephalomyelitis (ME, also known as chronic fatigue), Ehlers Danlos syndrome (EDS), complex PTSD and complex regional pain syndrome (CRPS) — a complex mix of neurological and physical conditions that affect their life every day.

But it's only in the past year that Khadija has felt able to claim the "D word" — disabled — and say it with pride.

These are Khadija's words on why being disabled is a source of joy and how finding your true self can change your world.

When you're not allowed to be disabled

Khadija isn't pretending to not be disabled anymore.(Supplied: Robert Lee Photography)

I am disabled. I said those words for the first time last year.

It took me 34 years to be able to have the space, the opportunity, the safety to give that to myself and say I am disabled.

Most people would look at me and think 'Khadija is able-bodied'. That's always been the assumption.

My mum had no room in her refugee experience for disability. She didn't have room to have an imperfect child.

When you've escaped bombs dropping around you, the threat of gender-based violence from forced marriage to sexual slavery… for my mum, she'd done her job of getting her children to the safety of Australia.

I learnt to disconnect from my body, I learnt to not listen to my body, I learnt to betray my body, I learnt to push my body to the limit.

I learnt to prove I wasn't defective, to prove I have worth, to prove I was worth saving and bringing to Australia, to prove that I was worthy to be loved as a child, as a daughter.

My mum was genuinely trying to protect me from the world that doesn't treat difference kindly.

I was already different enough, being black and femme-presenting in Australia. To add disability on to that list was too much for my mother.

Learning to claim the D word

When my son was diagnosed with autism and ADHD, it was like the word disability, the word that was banned in my childhood, banned from my home, this unsaid word, came rushing in.

I remember looking at this child and just going, "I love you unconditionally. There is nothing I won't do for you."

My baby is still the same child they were yesterday before I got the news. But I'm grateful to now have the information to meet their needs.

I was not given that.

I get jealous. I look at him and I wish I had the mum he has.

I look back and I grieve the accommodations that could have made my life easier. I grieve the self-loathing I spent years feeling because I felt defective, because I was told I was defective because I didn't act like the other kids, I didn't talk like other kids.

I grieve what my mum thought she was protecting me from. What she really did was make life twice as hard for me.

I am the mother I wish I'd had and I'm grieving for little Khadija and what she didn't get.

So I gave myself what I gave my child, I am reparenting little Khadija.

I am parenting a complexly disabled child and reparenting the little complexly disabled child within me who never received the parenting she needed, the love, the support. I'm giving it to myself.

There are no resources, I have nothing that has the intersections of race and disability.

I couldn't even find a brown or black therapist in South Australia. Today, if I wanted a black neurodivergent person, I don't know anyone except me. My son and I are the only Africans I know of who are autistic and ADHD.

The closest I can get any information is from the US and UK, which is a whole different context.

Ableism is the true shame in society

Khadija speaking at an event run by Feros Care on intimacy an disability.(Supplied: Feros Care)

I think for me the first thing was owning the word disabled.

To go out into the world and say I am proud of who I am, take me or leave it. I'm here and I will take up space. I will be seen and I'll be heard.

I'm getting involved in projects such as a campaign to normalise intimacy and disability that gives people with disability a voice and a platform because I want to help others find their voice.

When I think of myself as being disabled, I think yes, I have limitations, but by God, I have everything to offer the world.

The only limitations are the ones society places in my way.

I'm out of the disability closet.

My mum put me in there. Society put me there.

And at the age of 35, I'm saying no, disabled people deserve to be seen. We belong everywhere, we have a lot to offer the world. We're not people's trauma porn, we're not inspiration.

I know I sit at the intersections of race, gender, neurotype and ability. All one sees in all of those is oppression, oppression, marginalisation.

I also see joy.

People just need to get out of our way.

Khadija Gbla is a human rights activist, TEDx speaker, NDIS mentor, model and content creator based in Kaurna/Adelaide, South Australia. Khadija uses she/they pronouns.

from https://www.abc.net.au/everyday/khadija-gbla-on-claiming-the-word-disabled-with-pride/103171848