Gollum and his Precious hung out with our family over the past week. We’ve been listening to the BBC audiobook of the Hobbit, during car travel. It’s a brilliant way to stop sibling rivalry; school holiday road trips usually mean backseat disputes, but Tolkein’s storytelling mastery got us there and back without a single spat. I was enraptured and horrified all over again as Gollum keened for his precious ring; obsessively muttering to the object of his fascination, his precious, magical ring. He polished it so much, turned it over so often that it began to form a persona of it’s own. It became his companion, his torture, the cause of such a myopic world view that he stayed beneath the mountain, keeping to himself, convinced in his own circular thinking that the ring was his everything.
And while the school holidays and The Hobbit have been occupying part of my brain, in the background I’ve been doing a lot of thinking. About accessibility, what it means. And about disability and what that means. My views on all of these things have changed over time, broadened, really. I suspect I will continue to work on them as I grow up (!)
Before I got sick, six years ago, I was a typical able bodied person. I took for granted my abilities to get around and I experienced very little difficulty getting access to the goods and services I needed. By the end of last year, walking the length of a carpark was out of the question. Standing for more than five minutes, impossible. So I made use of hire scooters when they were available, or avoided outings that were beyond my ability. And despite the fact I have had mobility parking privileges since my diagnosis, to most people, my disability was invisible. Not ‘looking’ sick or fitting the ‘disabled’ stereotype meant a difficult shift in my experience of society. Every frustrating interaction with people about what was wrong with me was a grating abrasion of misunderstanding that would slowly scab over, only to be picked at again and exposed, over and over. A kind of circular torment for my mind.
The programme I am currently involved in is all about leadership for social change. So of course, I’ve been thinking about social change. It is very dear to my heart. How much I would love to wave a wizard’s staff and make all of the world a kinder place! In the absence of that (where’s Gandalf when you need him?) I’ve been cogitating over language, and how it can have a profound effect on understanding. But also about how a conversation between the society at large and people who are considered disabled seems a lofty kind of starting point.
Like any conversation without a common vernacular, misunderstandings occur. In just one example, our classic Disability Symbol shows a person in a wheelchair on a blue background. It’s globally recognised. It is by nature simplistic, because it is a symbol, a representation. Short-hand to describe a designated access point for people who have difficulty being mobile. But somehow, the symbol has pervaded our collective concept of what being ‘disabled’ actually means. A dis -ability to walk. Maybe, the symbol was just born from a notion of disability that is steeped in stereotype. I don’t know if there is a better way to symbolise disability in a pictograph. It is what we have and it serves it’s purpose. But does it also serve our thinking? Can it help us to reignite a discussion and develop a shared understanding?
For a very long time, I struggled to accept that I too, was a legitimate member of the disability sector. I felt I had to explain myself; should I get a bumper sticker to defend my use of my own mobility card? I felt this most keenly in the company of people who were disabled in the literal meaning of that symbol. People in wheelchairs and those who champion their rights. As though my own limited mobility was in direct competition with their more evident disability. And so whilst I felt completely forgotten by the world of the able-bodied ‘well’, I felt unable to sit comfortably in my new designation. Invisibly disabled. A position that required my own elevator pitch of explanation, to anyone who cared (and even those who didn’t) that not all disability is visible. It saddens me that some people within the disability sector find this hard to get to grips with. How can we work together as a community if our diverse types of disability are not recognised by each other?
Recently, I posted on my blog’s Facebook page about the new working party that has been set up to provide more comprehensive and comprehensible data on the disabled community. It’s a move I welcome. I have often tried to research local data related to people with disability. There is not enough. The right questions are not being asked. We represent 24% of the population, and yet so little is known of who is in this sector. What I can tell you, is that:
“The most common cause of disability for adults was disease or illness (42 percent)”.
You can find more general information in the statistical summary, here.
It’s interesting, that statistic. I suspected, when I began to research for this piece that most people, when asked their definition of disability, may not even include sick people. Tell me, do you think that illness and disability are distinct from one another? There are hotly debated positions about what it all means. But does the definition matter as much as we think it does?
Or are we just a little bit precious about it?
As my friend Carly put it : “disability has different meanings to people with disability and without. For people without, it means impaired, lesser, poor them, other, pitiful, a loss of life, inspiration porn. But for people with disabilities, there’s a sense of pride, community, achievement, normalcy”. Carly is an appearance diversity activist. Her work spans all manner of societal attitudes toward people with a variety of disabilities. Her blog is well worth a look. Her comment got me thinking about our views of disability. And all the rhetoric within the sector. I thought that when it all comes down to it, I just want to find the bridge that connects the diverse worlds within the disability sector to the world of non-disabled people, to increase understanding and connection.
And because words are my go-to method for making sense of life, for me it begins here. Within the language.
I looked up definitions of disability. There were many, very wordy, carefully considered descriptions. I thought about how bogged down we get in all that verbosity. And then I thought I should ask children; I canvassed the mums in my wider networks on facebook. The mainstreaming of education for children with special needs has had a profound impact on the curriculum and the views of the present generation of school aged children. Where most of the pre-school children I asked had a narrower definition, like Ben; “their foots don’t work” or Asha “they ride little cars”. School aged children generally talked about the ability factor: “not being able to do things as easily as we can” (Carter), and “(disabled people) have got a little problem that makes them a bit different” (Xavier)… and this, from Natasha, “it’s not something wrong with you, it’s like you have a gift to see things differently, and you may look different but really you’re not”.
And I wonder if I’ve been tying myself up in knots over all the layers of meaning, the symbology, the realities of an incredibly diverse society. We are not the only group skirting the statistical soup of New Zealand society. We represent, together, a good number of New Zealanders, but we are as diverse within our own sector as they are without. I suspect, social change that moves us away from the ‘othering’ begins when we stop considering ourselves as so different. When our own obsessions about our sector, our precious, carefully built ring fences break open for a new view. So, 24% of New Zealanders are disabled in some way. Not the same way, but in some way. New and better statistical data might help us to meet the needs within our sector better. It might inform more discussion, debate and dilemma. It may help us better define our strongest identifying characteristics.
But it occurs to me, that social change can only happen when all of us can see that diversity itself is what have in common. All of us, abled, disabled, invisibly or visibly, othered or outered, mainstream or fringe.
Diversity really is the one ring that binds us all.