Here is an article I found on the abc’s website, Ramp Up. Leah Hobson has written about the transition from childhood to adulthood for people with a disability. I met Leah a year ago when she offered to become a peer support worker for our program here at Yooralla. Leah is a passionate writer and advocate for the disability community.
Here is her article:
I’ve had this theory for a while that if you’re disabled, you take a lot longer to become whatever it is you are – whether that’s a wage slave, a queer person, an artist, or all of the above – than most people. While many others take a few cathartic years in their early to mid twenties to figure it all out, that’s the time when people with disability are grappling with multiple problems alongside the kind of identity questions that plague us all.
If you’ve spent your whole life – or even a significant chunk of it – as visibly disabled, by the time you’re in your twenties you’ve had to deal with being stared at, called names, and told you were “brave” and “special”. You’ve been ostracised through both shame and celebration. It’s no wonder you’re confused and possibly angry.
Then suddenly, when you’re no longer cute, another element rears its head. It’s possible for you to be invisible. Lots of services cut out when you’re eighteen. People who supported you at school and at home are suddenly no longer there. Agencies that may have used your image as a struggling but hopeful youth to raise funds for services (or top heavy management structures) are not interested because you are no longer part of the most fiscally viable demographic. (Go and look at a few service provider websites: the most prominent pictures will be of young children.)
There are many ways to handle the sharp transition from being an object of bullying, sympathy and fundraising, to an awkward social misfit better left unseen, bundled away from the inspiring headlines about overcoming stuff. You could be burdened with a massive sense of self entitlement. You could have the world’s biggest chip on your shoulder, like I did. You might be in complete denial, waving the ‘normal’ flag at all the ‘normal’ parades.
But whichever road you take, some things are certain. For one thing, it’s unlikely that you come out of the vastly contradictory experiences of a disabled childhood with a sense of self worth about your disability.
You’re thrust into the harsh daylight of a world that doesn’t know what to do with you, and it’s no wonder you find it hard to face yourself. Where children with disability are both celebrated and shamed without any regard for the internal schisms this creates, adults with disability also face no-win social memes.
Some of these are starkly contradictory. For example, if you’re on a pension you’re a bludger or an object of pity, but if you’re trying to work you’re clearly less efficient and able than other applicants. If you want to cure yourself, there must be something wrong with you. If you don’t want to cure yourself, there must be something wrong with you too. If you love your disability it’s weird that you’re happy about it. If you hate your disability, there’s no way you can be happy about it, ever.
Owning your capacity as a human being, your autonomy about what happens to your disabled body or mind and above all, your happiness, becomes a huge struggle. It takes energy to fight these external, invisible demons. And that’s on top of the energy it takes to live an everyday disabled life, where getting dressed might cost you an hour, or reading a book for twenty minutes might mean you can’t think straight for the next twenty. “Who am I?” becomes a question that sits on the back burner while you get through one day, and then the next.
All of this takes place in a society where part of the reason that disability is so invisible is because it’s utterly uncontroversial to be pro-disability. Everyone is pro-disability, aren’t they? Nobody would want to hurt people in wheelchairs, people with guide dogs or guide dogs in wheelchairs. Would they? All you have to do to prove your pro-disability credentials is give to a charity that helps the disabled, or talk about how lovely your next door neighbour or niece is… you know, the one who is always happy because they have an intellectual disability.
In reality, our society is only pro-disability until you scratch the surface. Don’t get me wrong, there are lots of people who do lots of good things that help lots of people with disability in useful ways. But there are also schools that refuse entry to ‘difficult’ children. There are judges who let off parents who kill their disabled charges because it must be so hard. There are people who smile quietly as they drop money into the rattled tins but don’t stop to think about whether the charity they’ve just donated to puts people with disability in charge of their own lives.
And if you dare to question those things as I have here, you are unreasonably angry. And if you’re not unreasonably angry, then you must be happy, therefore everything must be okay!
Combined, all these things make it inevitable that many people with disability become cornered and tired and silenced. From then on, it’s a matter of applying common sense; people who are cornered and tired and silenced are often riddled with self doubt or self hatred. It takes time and a conscious effort of will to overcome those things.
Only then can you think about being a manager or a mother or a bisexual adventurer or a van Gogh in the making. We are losing a swathe of people who could be brilliant to sleepy decades of constricted thought. And while we as individuals with disability are disadvantaged by our lost years, so is our community. Without pride in ourselves we cannot create pride in those around us. We are too busy chasing down the invisible barriers, the things never quite said.
Like becoming that person with multiple labels, goals and ambitions, becoming a better society for people with disability is not a one-shot process. It’s going to take a long time and a lot of thought.
The first step is to recognise all our contradictions, traumas and mistakes.
The second step is to stop hating them.