Thank you for deciding to read this. Today is International Day of People with a Disability.
It feels like the right day to write a bit about my personal experience with living with a few different disabilities. (this doesn't mean that every other day we shouldn't be advocating for accessibility in all spaces.)
The reason I decided to call this blog "my disabled identity" is because this is something I struggle with daily. (SPECIAL NOTE: if you have a disability - you do not owe anyone your story. It is yours to tell if you choose to. You are valid. Always.)
My name is Leanne. I am 27 years old. I am a social justice activist. I am a feminist. I am a business owner. I run a community group. I have multiple disabilities that are connected by the fact that they all happened at the same time, but separated in that they are quite complex and affect me in different ways.
It's probably been around 10 years since I've written or spoken about my experience in great depth.
When I was going through treatment for bone cancer I often did speeches (every few weeks from age 11-18). I had no hair. I was severely underweight. I was in a wheelchair. I had visible metal framing and scarring on my body.
I was well spoken and could articulate what daily life was like for me, and I was happy to be given the opportunity to speak for myself. The reason I was asked to do this was to raise money or awareness for childhood cancer charities.
As an adult I became more aware of my identity as a person - seperate from my illnesses.
I got my first job, eventually I travelled, the list goes on. I stopped doing speeches. I just finally got to live my life.
Then I got even older, I moved interstate, I got married, we travelled, we started our own business, and now have our own community group.
All throughout this time, I had been having check ups to determine whether my cancer had returned and I managed my disabilities as they came to be a problem. I am now completely clear of cancer.
My disabilities have always been intertwined with my daily life and not something Keith (my husband) and I discuss too often. It's almost like we have an unspoken language about the way my body works and we discuss my/our frustrations with the world when they come up. Because every day isn't the same. I go (sometimes too hard) and then just ask him to help me when I can't walk cause I've danced too much the night before. Or he helps me when I can't hear. Like most people with a disability - I'm just trying to live my best life.
Anyway - Here's the tea sis:
In early December 2003, I was diagnosed with Osteosarcoma (Bone cancer).
I was 11 years old at that time. By December 29th, 2003 I was having my first dose of chemotherapy. My diagnosis was quick and to the point.
I had 3 months of chemo before my tumour could be removed.
There were multiple discussions of if my leg could be saved.
There were a couple of options, amputate, receive bone from a deceased donor [never guaranteed to work as your body can reject], or try an experimental new option. (Spoiler: I chose the weird new shit).
The tumour was in my left Tibia bone and most of it was removed as a result. I went into surgery not knowing if I'd come back out with a leg. They just couldn't guarantee it.
I came out having had bone grafts from my hip & fibula taken to work in conjunction with a something called an "illazarov fixateur" to attempt to grow back my own bone.
This had never been done on a cancer patient before.
WARNING: Graphic image below.
Here was the aim of the game:
As an 11 year old, going into surgery with a 'normal' leg and coming back out with this frame was honestly traumatising at the time.
This stayed on my leg for 18 months.
All up I had around 25 surgeries.
All complicated. All painful. Lots of drugs. No school/social life. Chemo being a living hell on earth.
So yes, all this time with all this complicated stuff happening. Big decisions all the time.
Every single thing never been done - trial and error etc. WAY too hard to explain in a blog, but you get it.
Cut to my last day of chemo - we went out to dinner to celebrate - I had severe back pain.
I ended up back in hospital with a kidney stone. (I still had the frame on my leg at this time).
They put me on morphine. In the middle of the night, high as a kite, I decided I could walk to the toilet on my own. (I had not walked in 8 months - Keep in mind I had no bone in my leg - what a tripper).
Here's a perfect visual for how high I would've been at the time:
So I fell, and I broke my leg above the frame (near my knee) and below the frame aswell (near my ankle).
I ultimately had ruined months of trying to grow my own leg back in about 10 seconds.
So, they extended the frame higher, it got even bigger than the picture above - it went up to my thigh.
Here's a pic after I finished chemo - and after I broke my leg resulting in them extending my frame - which is that new cheeky silver part.
(side note: surely the best part about this pic is the lava lamp):
We later learned that I not only broke my fragile leg, I broke through all of the growth plates.
Which meant as soon as I started growing - my legs would never be even.
Cut a very very long story short - 18 months of frame enduring - 8 months of chemotherapy - 5 years in a wheel chair. Lots of operations, lots of bone, skin and muscle grafts - I had a semi-working leg.
I had to learn to walk again with the aid of crutches - it's the strangest thing ever, not knowing how to put one leg in front of the other and transfer your weight. (shout out to babies - that shit's hard)
I was always adamant the entire time - don't touch my 'good leg' (my right leg). I was so protective. If anything ever happened and they cut off the left one - I wanted to have at least one decent leg to pick up the slack.
And then, I started to grow, my left leg was a lot shorter than my right. It was horrible.
So, I gave in, and my right leg was shortened to match with my left. I had plates put in my right hip/thigh where they had shortened it.
I also had plates in my left leg to keep all the grafts, and mis-matched craziness in my leg in place.
Oh, and then I also ended up breaking my leg AGAIN. (I'm not getting into that - but the result was more pins and plates etc.)
I'm gonna cut to years later because I can.
My last operation was when I was about 19. I had a job. Keith and I were together at this point. I was planning travel overseas.
I couldn't sleep, my right hip/thigh had a plate (from where my leg had been shortened) that was so uncomfortable, I could feel it through my skin and couldn't sleep on one side.
I ended up having surgery to have it removed.
So now 2019 - I'm 27. Here's what's left:
Scars - I got them on my neck, ribs, hip, right thigh, left hip, left thigh, and severely on my whole left leg. They truly do not bother me - I embrace the staring.
Plates - I've got screws and plates all down my left leg. And they'll be there until they give me grief at which point I'll have to have something done about it.
Grafts - I've had a lot but visually - I have a big muscle and skin graft on the front of my left leg. This is a blood supply for my leg. It's almost like I have a 'backwards leg'. (You know how you can tighten the muscle on the back of your leg - I can do that, but on the front of mine. It's wild looking.)
Hearing loss - I have terrible hearing. When you have certain types of chemotherapy, it can affect your hearing permanently. Unfortunately this was the case for me so I am now a hearing aid user.
Arthritis - I have arthritis which will only get worse as I get older. Some days I don't notice too much. Other days I can't walk. Depends on what I've done the day before/the weather/if I've rested. My leg has it all the way through so it isn't strong and the docs have said it will probably break at some point.
Movement - I have limited movement. I can't cross my legs, I can't lift my toes, I have a limited bend in my knee and hip.
Balance - I fall over quite a bit because my knees are at different heights, and my brain doesn't connect to my toes correctly - so I sometimes trip or hit my knee into things. It's very sophisticated and not at all embarrassing. Bit shit when I can't do things like ride a scooter, go diving, or drive manual.
Fertility - No, I don't know if I can have children because the evidence is not conclusive. These days they are freezing eggs/taking measures to ensure people with bone cancer can have kids. I didn't have any of this stuff done - so yeah, it is what it is and I'm just stoked to be here.
Mental Health - Yep, every now & then I get a bit down about it. Because I'm bloody allowed to.
So here's the part where I actually discuss my disabled identity - YAY you made it!
My story is so bloody complex.
And I think that's where I struggle a bit. I can't really explain what happened to me in the space of 5 minutes. Most of the people I know probably haven't ever seen the photos in this blog.
I often get asked about my leg (mostly at work - I wear shorts) because of my scarring - and my go to answer is "I had bone cancer so I had a lot of surgery". Ultimately I try to downplay the conversation because I do have a sense of humour and I don't want to be making people sad - and people do get sad. And they tell me about their cancer story or about someone they know. And cancer fucking sucks. It really sucks to have a story that's provokes sadness in people.
I always end my story on the same note - which is that I am a success story in my own strange way.
"Don't be sad. Be happy for me."
Which is true, but it still doesn't mean that some days aren't shit..
Some days, I can't hear a fucking thing, I feel dumb, I feel like everyone is staring at me, I feel frustrated beyond belief, There's too many stairs, There's too many noises interfering, I'm trying so hard to lip read, This person asked me to do something which made me have to discuss my disability, I feel unprofessional, I don't want to be asked about my leg right now, My body isn't working the way I want it to, I feel rude because I can't hear, the list is endless...
Some days I think my disabilities are quite unique and rad, and some days I hate them so so much.
Most of the time, I joke about my disabilities to break the tension, it's how I cope because it's too fucking awkward otherwise to be honest.
I think people forget that people with disabilities experience LIFE outside of their disabilities aswell, we have things happen at work, with politics, with family, with friendships, with money, with relationships - Life does NOT stop just because you have a disability.
I'm still learning, my life presents new obstacles every now and then that I have to come up with a solution for. So please, don't pigeon hole people with a disability into "they are healed", or "they have no quality of life", or "they wouldn't/couldn't come to XYZ" etc.
Some days my disability makes up 10% of who I am, some days it makes up 90% and so on..
It's SO COMPLEX. Even writing this, I can't quite get to the final point for what I'm trying to say.
It's always going to be an evolving thing in my life.
I can't give advice on how you can make the world a perfect place for someone with a disability - but please know we're here, just trying to live our lives. Even if we're not talking about it.
Every person should be an ally (especially able-bodied folk), every space needs to be accessible. Start today to make a conscious effort to think about it - look around you. Look at the places you frequent. Speak up if they aren't accessible.
Inclusiveness is key for a good life - for EVERY ONE.
Oh and - don't be a piece of shit & cut $4.6 billion to people who are on NDIS. (I'm looking at you libs - and no I'm not on the NDIS but you should all care about human beings. Stop enabling terrible people into power.)
Cheers for reading, Lea x