Genuine inclusion of people with disabilities will never be achieved while we continue to ignore the most basic of access requirements. Credit: JerryX (iStockphoto)

Despite relentless talk of 'inclusion', many people with disabilities repeatedly find ourselves all dressed up with nowhere to go, writes Stella Young.

In disability circles we hear a lot about inclusion. An organisation that employs people with disabilities among its staff is considered an 'inclusive' workplace. We refer to a school that has students with disabilities among the general student body as an 'inclusive' education setting. Sporting programs, community groups, adult education classes - if there's one of us disabled types there, it must be inclusive.

The jury is out on when the word first appeared in the disability vernacular, but I first became aware of it as a buzzword about ten years ago. And it has hung around. You know, like 'shifting paradigm', 'change maker' and 'webinar'.

When inclusion first appeared on the scene, I wasn't a fan. Talking about the inclusion of people with disabilities seemed somehow to imply that our natural state was to be excluded, and that we needed to make a special effort to tolerate disabled people. I took exception to that.

As an aside, 'tolerance' is another word that really gives me the pip. It's used to refer to accommodating race, religion, disability and even gender. It feels like asking people to endure the existence of people who are anything other than white, able-bodied and male.

In the years since I first became aware of 'inclusion', it still grates, but for different reasons. Perhaps, for me, it's become less about the implication that disabled people are naturally excluded, and more about where and how the concept of inclusion actually applies in a meaningful way.

I had three experiences in the course of last week alone where I was unintentionally excluded due to a lack of wheelchair access. Two were professional events - launch parties for projects that I had contributed work to - and one was a joint birthday party for a couple of friends.

Late last year I missed out on attending the wedding of a close friend I've known for many years, because their venue was upstairs at a pub.

In a professional environment, I'm generally included. My access requirements are met in my workplaces (although this hasn't always been the case and is not the case for a number of people I know). But when it comes time to celebrate, it's often a different story. At one job, I arrived to our offsite Christmas party only to discover there was no wheelchair access to the venue.

Not for the first time, I went home and left my colleagues to celebrate.

I am political about disability. I'm relatively well read in disability theory. I have worked hard to become someone who doesn't apologise for their existence, who doesn't accommodate and validate prejudice. I have the words of the late Laura Hershey, 'you get proud by practicing', tattooed on my right inner forearm. I am not someone who hates my impairment. I believe that for me personally, disability comes with as much privilege as it does disadvantage. I like who I am, and I acknowledge that I have been unquantifiably shaped by my experience as a disabled woman.

When I discovered the social model of disability when I was 17, it allowed me to make a distinction between the limitations of my body and the failings of society. In a nutshell, the social model tells us that we are far more disabled by inaccessible environments and hostile attitudes than we are by our physicality. My disability comes not from the fact that I'm unable to walk, but from the presence of the stairs. We are not wrong for the world we live in, the world we live in is not yet right for us, and we need to change it.

Of course, the limitations of the social model are vast. It doesn't take into account that some of our restrictions and limitations do originate from our bodies. The environment is rarely the only issue, but sometimes it's hard to separate the two.

In those moments when I have to turn down an invitation, whether to a swanky launch party or the birthday celebration of a friend, or when I go home alone after being confronted by a lack of access, I am filled with sadness and anger in equal measure. I'm also aware that in telling the truth about why I can't attend, I've made other people uncomfortable. I have highlighted their thoughtlessness and so I also feel guilty.

The way I see it, I've been invited, therefore I've been 'included' from their perspective. But the onus is almost always on me to highlight the access barriers, and consequently decline the invitation. I am forced to lay my vulnerabilities bare. Intellectually, I know that this is someone else's failing. While I know that the reason I can't attend the party is because it's up a flight of stairs, I'm simultaneously reminded that I cannot go to the party because I am unable to walk up those stairs.

Every single time I'm invited somewhere, I must ask, "Is there wheelchair access, including accessible toilets?" No one ever says, "Please come to our event, we'd love you to join us and of course we have considered your access needs."

Like many marginalised groups, the anger allowed to disabled people is rigorously policed by the dominant culture. This culture allows us to be angry about what it deems the problem - which is, in more cases than not, impairment itself - but balks when that anger is turned outwards on a society that refuses to adapt itself to remove the actual barriers that disable us. When we justifiably turn that anger on society, we are dismissed as 'bitter'.

It's a common story, whether your requirements are wheelchair access or something different. Apologising to a friend of mine who has a Deaf partner that an event I was speaking at wasn't going to be Auslan interpreted, she laughed and said, "Oh, we would never assume there'd be an interpreter, don't worry." That, to me, is a worry. A pretty big one. And yet, where's the outrage?

Many people are eager - and justifiably so - to point out the failings of institutions when it comes to issues like race, gender or sexuality, but remain silent on disability. The NSW library recently made the egregious error of planning a panel on multiculturalism and invited only Anglo speakers. The public response was swift and damning, as it should have been.

But the persistent exclusion of disabled people does not attract this kind of response. There is no loud protest against the thoughtless exclusion of disabled people with access issues. We either ignore it altogether or relegate it to the too hard basket. Why? The only difference I can see is one of intent, and as the common refrain now goes, intent is not an excuse.

When this kind of exclusion happens in professional settings, the message is clear: we are happy to have you work with us. We will include you in our program or event or comedy line-up. But that's as far as we'll go. We've let you in, we've ticked that box and we will boast about it in our annual report. We will pat ourselves on the back for being inclusive and tolerant. And then we'll celebrate without you.

When it happens in social settings, it stings in a different way.

I often wonder whether I would rather just not be invited in the first place, than be put in a position, over and over again, where I have to decline invitations from people who haven't thought it through. It's awful to be excluded, but it's almost worse to have to tell people who (at least most of the time) mean well, that their thoughtlessness has excluded you.

It is on days like these I remember why I have the words of Laura Hershey tattooed on my arm. Because it takes a lot of work to be proud of who you are in the face of persistent exclusion.

Unfortunately, 'inclusion' has become another one of those concepts we pay lip-service to, while kidding ourselves we're making an effort. Until we start practicing what we preach, 'inclusion' is just another word.