Just say hi?

The brilliant and wonderfully grumpy Sam at gimpled has an insightful complaint against the “just say hi” campaign. If you haven’t seen it, it’s a video doing the rounds of social media that features a bunch of celebrities and a few token people with disabilities responding to the (ridiculous) question, “what do I say to a person with a disability?” As Homer Simpson would say, Doh!

I guess the ad is an attempt to normalise disability, but it has the opposite effect. Prior to having a disability, I could traverse the world invisibly. I could, for example, read on a train with very little fear of interruption. When I first got into a wheelchair I felt terribly self-conscious, as though everyone was staring at me. Before too long, though, I got over myself, only to discover that a lot of people must actually be staring at me. At least that’s what their friendly greetings seemed to indicate.

Sam hates strangers who “just say hi” to her. Check out her reason (here).

I’m not sure, though, whether I completely agree with her. Whether I like it or not, there is a good chance strangers are going to speak to me on a train and elsewhere. If I have my head in a really good book, it can be annoying. But often, I’m just reading the SMH or Facebook (or worse, some boring theologian/philosopher). If I go with the flow and take the opportunity to chat, it can make for a more interesting – and a more human – journey.

I guess the key is to follow the golden rule; do to others as you want them to do to you. The problem with the “just say I” campaign is that it targets disability. Perhaps it might have some relevance if directed more broadly; if it stood as an encouragement for a more friendly world. Then again, my introvert friends might want to punch me in the face for suggesting as much.

Pauline Hanson and the politics of demonising difference

Senator Pauline Hanson has once again used the strategy of demonising the different to further her political agenda. Over the years, she has demonised Asians, Muslims, and refugees. This time her target is disabled children, who she accuses of wasting teachers time in the classroom, and so holding back the education of “our children.”

In the face of the barrage of media criticism, she now claims she has been taken out of context. But the full speech is available on the Parliamentary Hansard record, and her meaning is plain. But so is not to do her an injustice, here is the relevant section of the speech in full:

There is another thing that we need to address, and I will go back to the classrooms again. I hear so many times from parents and teachers whose time is taken up with children—whether they have a disability or whether they are autistic—who are taking up the teacher’s time in the classroom. These kids have a right to an education, by all means, but, if there are a number of them, these children should go into a special classroom and be looked after and given that special attention. Because most of the time the teacher spends so much time on them they forget about the child who is straining at the bit and wants to go ahead in leaps and bounds in their education. That child is held back by those others, because the teachers spend time with them. I am not denying them. If it were one of my children I would love all the time given to them to give them those opportunities. But it is about the loss for our other kids. I think that we have more autistic children, yet we are not providing the special classrooms or the schools for these autistic children. When they are available, they are at a huge expense to parents. I think we need to take that into consideration. We need to look at this. It is no good saying that we have to allow these kids to feel good about themselves and that we do not want to upset them and make them feel hurt. I understand that, but we have to be realistic at times and consider the impact this is having on other children in the classroom.

We cannot afford to hold our kids back. We have the rest of the world and other kids in other countries who are going leaps and bounds ahead of us. Unless we keep up a decent educational standard in this country we will keep going further backwards and backwards, and our kids will not be the ones who are getting the good jobs in this country. They will be bringing in people from overseas and filling positions in this country that belong to our children. Our education is very important, and I feel that it needs to be handled correctly and we need to get rid of these people who want everyone to feel good about themselves. Let us get some common sense back into our classrooms and into what we do. Like I said, One Nation has spoken to many areas. Have we got it right? I hope we have got it right, because it is very important.

http://www.aph.gov.au/Parliamentary_Business/Hansard/Hansard_Display?bid=chamber%2Fhansards%2F1b7c6ef2-042a-473e-8860-145c2e88002f%2F&sid=0013

There are so many issues here that it’s hard to know where to start. Wedge politics works by playing on people’s fear of the other, and it almost always operates without any basis in fact. There is simply no empirical support for the fear that including people with disabilities harms other children. On the contrary, there is now overwhelming evidence that, if done well, inclusive education benefits all children; that “together we learn better.” It is not only that diversity in the classroom helps to establish values of respect, generosity, and compassion, nor that it helps us to see that disabled people aren’t so different after all (although if this is all it did, it would be enough!) But the evidence has also found that focused and differentiated classroom instruction and management helps all students to do better. Indeed, Hanson imagines that she is harking back to a better day, when teachers were not “sidetracked” by the “burden” of disabled difference. In reality, the good old days weren’t so good. Not only did exclusive education have a detrimental impact on disabled children, it turns out that the old-fashioned educational model of “one size fits all” in the classroom actually fitted very few people.

As usual, Hanson isn’t one to let the evidence get in the way of her political agenda. If she was really concerned for “our children” – which includes those with disabilities – then she would be advocating for an increase in resources to enable inclusive education to work as it should. But her brand of wedge politics is not about the issue at hand, it’s about stoking the fire of fear that always attends to difference. It’s inevitable that we fear the person we know little about. And what’s more depressing than Hanson is that she doesn’t so much inform the values of a significant number of Australians, but reflects them. She is a mirror, a cipher, for so-called everyday Australians. And that makes me sad.

Except, in this case I hope she’s gone too far. I hope that in 2017, Australians don’t think of the disabled as carnival freaks, welfare cheats, classroom burdens, and a social virus that need to be sequestered from mainstream society, so that they don’t infect us with their abnormality. I hope that Australians will recognise that people with disabilities aren’t the fearful other, but are one of us; our mothers fathers brothers sisters and friends. I hope that the mere suggestion of excluding them from the classroom, or any other social space, makes us mad. So mad that no matter what our political persuasion, we tell Hanson that enough  is enough; that when it comes to disability, Australia will not be divided.

Bottoms Up

It’s not everyday that I put a picture of my bum online, so here is a special treat for you. It’s a close-up of a pressure sore that my carers discovered this morning. It doesn’t look like much, but unless I stay out of my chair and keep off it, it’ll grow in size and becomes the stuff of nightmares. Google images of spinal cord injury pressure sore if you feel like throwing up your breakfast.

I don’t know what caused it, but Elly blames my brother Kurt, who commented on the weekend that it’d been ages since I’ve had one. If anyone sees him this week, make sure you punch him for me.

I’m supposed to be teaching an intensive class this week, so I’ve decided to do it from bed. It’s a small Masters class, and the students are going to sit around my room while we talk about moltmann’s theology of hope, and feminism’s turn to embodinent, among other things. i guess that’s appropriate.

I started to get depressed but it was suggested that I save that till days 3 & 4, so that’s my plan.

“Yes I can,” Paralympics and the positivity myth

It has taken me some time to decide whether or not to comment on BBC4 “Superhuman – Yes I can” advertisement for the Paralympics, because I know that any critique I make will be misunderstood. But it’s airing on the Gruen transfer last night has tipped my hand.

So let me say upfront that it’s a brilliant advertisement, the Paralympics are much more interesting than the Olympics, and I do appreciate the value of disability getting the attention that it does in this advertisement. More often than not, disabled people are represented by able-bodied actors in film and television, so it’s great to see the real bodies of disabled people on the screen.

But…

Like almost every other public mention of disability nowadays, the add buys in to the positivity myth. I’ve written on this topic a number of times before (here), but in sum, the positivity myth insists that a positive attitude will enable a person to overcome every barrier they face in life. While it might be a motivating sentiment, it’s just not true.

Indeed, the great insight of disability advocates has been that disability is not primarily a medical or psychological problem – it’s not about individual capacity or attitude. On the contrary, disability is a social problem. People are disabled when the built environment keeps them out of public and private spaces, when transport systems prevent them from being able to travel, when cultural attitudes such as disgust and paternalism result in social alienation and exclusion.

“Okay,” you might ask, “what’s that got to do with BBC4’s ‘yes I can’?”

The problem is that people think the advertisement is about disability, but it’s not. The vast majority of disabled people cannot do the things shown in this advertisement. Of course we celebrate all of the achievements represented on screen, but the statement “gee I’m afraid to go on has turned into yes I can” is downright insulting; and gets to the heart of the problem of the positivity myth. I’ve never met a disabled person who is afraid to go on, but I’ve met some who can’t go on because in one way or another the world in which they live in has said “we want nothing to do with you.” And no positive attitude can solve this.

The advertisement is entitled “the Superhumans,” which is an advance on being called “freaks.” But the truth is, that disabled people aren’t superhuman. On the contrary, disability is about what it is to be human, at one and the same time strong and weak, confident and fearful, successful and failing – occasionally triumphing, but most of the time wanting the same thing as everybody else; to be treated neither as freakish or superhuman, but as a family member, friend, and colleague.

Having said this, I still like the advertisement. I’m glad it was made, and I’m glad it’s being circulated, because disability is normally a marginal topic that is now given prominence, and people with a wide range of disabilities are being celebrated rather than pitied. Further, I don’t think it falls into the trap of inspiration porn, because it’s not saying to nondisabled people “if this cripple can do this, what’s your excuse?” Rather, it’s celebrating the hard work and the achievements of people who warrant our applause – not because they are disabled, but because their accomplishments are impressive.

Perhaps I be happier if the video had a different title and a different set of lyrics. I look forward to seeing what they do in four years time.

pain

pain

I woke up last night at about 3 AM in pain. Well, in more pain than normal. It’s been almost 6 years now that I have lived with permanent pain, a span of time I remembered this week when I spoke to a fellow quadriplegic who said he’s also been in pain since his injury, forty-three years ago (but still, he insists, he has had a great life). It seems an awfully long time. To greater or lesser degrees, it’s a problem for many people with a spinal-cord injury, and it sometimes worse for people whose damage is incomplete (as is mine). And I know we’re not alone.

Nerve pain is hard to describe. Imagine a sheet of finally grained sandpaper, which is rubbing lightly over your skin, pushing a little harder on your hands, feet, bottom, and groin. It burns, although it’s not excruciating. But it continues without pause for minutes, hours, days, years. It moves in waves, gentler in the morning, but increasing in intensity as the day wears on. If you’ve ever had a urinary tract infection, nerve pain in the bladder is like that desperate feeling that you need to urinate, but there is no relief and no antibiotic that will bring it to an end. In addition to nerve pain, some of us are also rewarded with stabbing aches (whether real or phantom, they feel concrete); imagine the ache of arthritis in your hip or back, but you can’t easily move to relieve it.

To write about pain is fraught. It is open to narcissism and overstatement – “look at me, look at my courage and resilience.” But there is nothing inspiring about dealing with pain. Mostly, we just do our best to ignore it – to pay attention to other things. And when it ratchets up, I’ve learned to curse; a grumbled sheet, folk (my voice recognition software is protecting your eyes and ears), which doesn’t really accomplish much, but sometimes you just need to let it out. It’s not spiritual, or courageous. It is a fact of life, but not the whole of it.

Pain is meant as a warning mechanism, but there is no warning in nerve pain. But it turned out that I should have listened to my body last night. The pump on my pressure mattress had switched off, I didn’t realise it, and my bed had gone flat. When my carers arrived in the morning, we discovered a pressure mark. Nothing substantial (I hope), but enough to keep me in bed. And that really gets my goat.

 

welcome home

home
a church called home

I love my church. Why? It’s vibrant, energising, and interesting. It has slightly strange “Techno” music which, if it’s not really my preferred style, at least enables me as an old man to pretend I’m young. But mostly I love it because it is welcoming and inclusive.

It just so happens to be the case that my pastor, Sebastian, has two disabilities (well, three, actually, but we probably should label my attendance as an impairment rather than a disability). He doesn’t make a big deal of them, but neither does he hide them. The first is a long-term mental illness and the second is a slight speech impediment – a stutter that probably goes unnoticed by most people (in mentioning it, I hope I haven’t condemned him by bringing it to the surface?)

It is unusual in this day and age for a pastor to admit to a mental illness. This is because leadership is generally understood as “leading from the front” – as modelling the perfection that Christianity is supposed to achieve. Even more challenging, society as a whole, and Christians in particular, are suspicious of people with mental illness. We think of them as unstable and dangerous, and Christians assume they must lack faith. So people living with the illness, and especially leaders, tend to keep their impairment hidden. Sebastien manages his illness by following the medicinal and psychological advice of his psychiatrist, and he is stable and doing well, although as anyone struggling with the mental illness knows, its challenges are never entirely absent, and life has its ups and downs. More to the point, he is entirely open before the congregation about his illness.

As to his stutter, it largely goes unnoticed, mostly because he devotes preparation time to ensuring his communication is free-flowing. Indeed, most people who have heard Sebastien speak would be surprised to hear that he struggles with a stutter, because he is an exceptional communicator. He has a natural stage presence, he is quick-witted and funny, and his messages are well constructed. But I love the fact that he is a great preacher and has a stutter. The best communicators are not robots, but people willing to be authentic.

So why am I telling you this?

For me to say someone has a disability is not to diminish them, but to pay them a compliment. But that is neither here nor there. I love my church, not because of Sebastian’s disabilities, but because he has allowed them to inform the way he relates to his congregation. Gone is the pretence of perfection that too often categorises church leadership. In its place is a radical inclusiveness that allows people to truly be themselves. And if the gospel means anything, it is that God loves people as they are, no strings attached, no perfection expected.