I come from a generation (Xennials) where we had one foot in one generation (Gen X) and one foot in another (Millennial), where the approach to how we were raised somewhat crossed both more distinct generations and left us with the scrappy stubbornness of the Gen Xers and the need and desire to deal with our health of the Millennials, but unsure how to do it. Our older siblings and cousins were Gen Xers and we wanted to be just like them, but our younger siblings and cousins were Millennials and oh how we envied them. It’s an odd fence to straddle.
But in some ways, I’m grateful for that fence that I straddle. I grew up in a time where I knew that I had health problems, I was actively encouraged to talk about the issues I was facing, but I was also encouraged to live an active life. Mum enrolled me in dance classes, gymnastics, and drama and speech classes, she encouraged me to play on the playground equipment and jump in the deep end of the pool and play in the sea. If I wanted to try a new sport, she didn’t stop me. I was encouraged to live the most out of my life, even though I didn’t know how long that life would be.
My life expectancy for the first ten years of my life was this thing that hung over my head with the knowledge that the doctors said I would be dead by the time I was 5, and if I made it to 10 well I would need another heart bypass which I wouldn’t survive. I turn 40 this year and no second heart bypass yet. Although my cardiologist has pointed out it’s likely that my EDS is the reason I’m still alive and I’m the only one of my bypass group who is still here. That’s a scary thought. But it’s one that makes me incredibly grateful.
I own each of my disabilities and I don’t allow them to stop me from being me. I am proud of each of them and how they make me me. Even on the days when I struggle with the pain levels, I find myself grateful for the way in which both my my mental health and physical health teach me more about me and the world around me. My pain tolerance is phenomenal. My appreciation for the beauty in this world is always going to be there, even on days when humanity is driving me up the wall. I love the way that my neurodivergent brain sees the details in things and enables me to write in a way that I wouldn’t be able to otherwise.
Like many of my generation, I proudly wear the labels of my disabilities and I proudly work to make the life of the generations that are coming up after me that bit easier by talking about the issues I face with each of them. I want parents to know that it isn’t all doom and gloom. I want kids to know that being disabled isn’t a bad thing. I want them to know that they may not be able to do exactly what their abled peers can do, but they have so many opportunities ahead of them, and even if for whatever reason, they can’t work in later life, their lives are valid and worthy. Worth is not down to the job you hold or the money you bring in. It comes in so many different ways and every human is worthy. Worthy of love, worthy of having their basic needs fulfilled, worthy of understanding.
It breaks my heart when I look at the Gen Xers who came before me who flat out deny their disabilities. The ones whom I know are completely aware of their disabilities but act as if they aren’t affecting their lives. The ones who claim that they outgrew a particular disability but you know it’s a) impossible to do that and b) you can see how it’s changed and migrated. It’s not a case of outgrowing that disability, it’s a case of just as you’ve grown and matured, the disability has changed with you. I see the way they struggle and the denial, and I look at their parents in response to this.
So many parents from the Boomer generation (no offence to my more understanding Boomer friends, I know a couple of you are reading this) have raised their children with a sense of “we don’t use the word disabled.” There is this innate fear of disability, of being different. Couple that with the struggles that women have traditionally faced in receiving neurodivergent diagnoses, and there’s a recipe for denial and disaster.
I see the ADHD or ADD in several of my older friends, along with the Autistic traits, or the OCD. They’re used to thinking they are quirky and have no frame of reference. But when you try and broach the subject of neurodivergence they clam up, as if they don’t want to know, even if you frame it in reference to your own neurodivergent diagnoses (I am Autistic with ADHD and OCD). And I know it’s because to them, they still see those diagnoses in the way that society tends to frame them. They would rather stick their heads in the sand and be in denial, and in some ways I can’t blame them. But it still saddens me.
Those of us who are assigned female at birth often wait much longer for neurodivergent diagnoses than others. And when we finally get them, the pieces slot into place in a way that suddenly make so much more sense. We’re better able to navigate the world around us when we know the why’s. As my life coach is fond of saying “it’s about finding your why.” I mean she doesn’t necessarily mean it in regards to neurodivergence, but she isn’t wrong. It suddenly opens up a whole way of understanding why we do things in a certain way, and why, for me, substance use disorder was one the ways I used to numb my emotions.
It amazes me how many of the people I know will choose to pretend that they are abled in both terms of their physical and mental health. They mask the pain and the difficulties unless they are among very specific people, but they don’t realise that the masking just reaches a point where it doesn’t work any more. It’s something I used to do and it led to a complete and utter burnout that I’m only just coming out the other side of. Trying to live up to the expected standards of others, including our parents and grandparents, isn’t helpful to anyone. If anything that denial and pushing through just makes things worse further down the line.
If I had known when I was younger that that join pain was more than just sprains and twists from dancing, gymnastics, and trampolining, maybe I wouldn’t have needed the wheelchair quite so soon. But hindsight is a wonderful thing. And honestly, my wheelchair is an amazing tool for independence, no matter what others might think about it. I’m not ashamed of the aids I need in my life to make my life easier. Adapting is a wonderful thing. It helps me to make the best out of my life.
Freddie Just Freddie - Words 