Context is everything: I am a father. I am a father to a child with a disability: Cerebral Palsy. Doctors think it was caused due to a traumatic birth and her being starved of oxygen. The form of Cerebral Palsy she has means her legs don’t work and she has problems with muscle tone and her core strength. She can walk, but only for short bits and she walks differently. We joke that she walks like she’s had fifteen pints. Her balance is terrible and a gust of wind can make her fall over. For that reason, we don’t eat beans very often. That’s why we tend to have a big car, so we can carry her wheelchair. Or, the wheels, as we like to call them.
Even though I don’t have a disability, I have lived with disability for twelve years and my relationship has changed towards it over the years. Initially, we had the shock and denial in the early years. And now we are in a very healthy relationship. It is a part of our life. We joke about it. In fact, there are lots of joke about it and dealing with it. You probably read some of the jokes in the last paragraph and thought they were close to the knuckle. Having a disability is not about crying about it in the corner? We take the piss about it more than we cry in the corner. In fact, I can’t remember the last time we cried. In fact, we don’t. We tend to associate crying in corners with able bodied people.
Over the years, we’ve been aware of the lack of diversity for young people – especially diversity in terms of disability. Finding a child in a book, cartoon or TV show with a disability is like finding a unicorn. They just are not there. Zero. Tell a lie: there was one cartoon, which had a 'supposed' disabled person: a teenage merman had to move around in a wheelchair when in high school, but when he is in the water he can move able with glee. But, there is very little out there. As parents, you notice this. There are no ‘That’s not my wheelchair’ or ‘We are going on a Bear Hunt, but we must look for concrete paths because of the wheel chair’. There’s been nobody we could use to help my daughter identify her place in the world. There was nobody visible in the world around her. Add to that, there is nobody in her family she could identify with, in relation to her disability.
In fact, like Harry Potter, there are two worlds that coexist. The muggle world. The able bodied world. And there’s the magic world. The world of the disability. A world that you can’t see because you don’t know it's there. I even tweeted J.K. Rowling about the use of wheelchairs in Hogwarts. Have you seen the stairs? I’d like to know what they’d do with a disabled child in Hogwarts. Magic them up the stairs. The thing is that the disabled world is hidden, forget and secret. I only know it exists and its rules, because, as a dad of a child with a disability, I was shown the secret knock to open the door to this world.
I applaud teachers’ recent efforts to include diversity and I applaud the thinking and the reasoning behind it, but I want to give some cautionary advice from my perspective:
One unit of work isn’t diversity
Recently, I saw a few people mention they have a ‘disability’ unit of work in English. For me, this is simplifying something that's complex, wide and nuanced. Yep, we’ve addressed disability in the whole English curriculum because we spend six weeks in Year 9 reading about it. Imagine if we treated other things in the same way. What is schools had a unit in English focusing on homosexuality? Or, a unit on men? Or, a unit on blindness? Yes, there might be an imbalance in society, but wouldn't it be better to have authentic texts throughout the curriculum rather than a discrete unit dwelling on it over six weeks?
How would you feel in a classroom if you were the only child with a disability and you were studying a topic of unit on disability? The issue changes just like that. There becomes an elephant in the room. That child knows it. The class knows it. The intent is good, but the experience is uncomfortable. Is that supporting a child with a disability? Or is that drawing attention to a child and making them feel even more uncomfortable? Children with disability struggle with identity and their relationship with their peers. With one fell swoop, you have undone the work a child has done to fit in with their peers.
My daughter has spent periods of her growing up basking in the attention of being disabled, but then she's also spent periods of her time wanting to hide and go unnoticed and 'fit in'.
Plus, what makes the teacher an expert on teaching a unit on ‘disability’. Even as a father, I cannot teach accurately about disability. I can share my experience as a father and on CP, but I cannot talk about being deaf, blind or another disability.
Disability is a wide umbrella term
The life experiences of a child with CP are very different to a child with sight problems. One child will not be able to walk and see. The other child cannot see but can walk. You cannot equate them as the same thing. Yes, they might have had struggles and difficulties, but they are not the same thing. You might think the story of a blind child will help a child with physical disability identify themselves, but they won’t. Disability is a complex thing.
In a way, it is insulting to people if you homogenise disability. You wouldn’t equate the experiences of being a migrant from China to that of a migrant from Syria so why do the same with disability?
There are so many variations of Cerebral Palsy that not all have the same experience. And, to think that is demeaning and largely insulting. Yes, there will be common threads, but like you: does every man or woman share the same life experiences as you?
Who are the books written for?
The purpose behind books is really interesting for me. I’d argue that a lot of books we commonly cite about disabled voices are not necessarily about conveying an authentic disabled voice. Instead, we have a lot of texts that are actually written to make able bodied readers understand what it is like to be disabled. We have the victim narrative. That’s a clear purpose. I understand why it is done. You can see it in films and books. Take ‘Wonder’. The book is about understanding disability from an able bodied person's perspective. Not an authentic voice about a disabled person sharing their life experiences.
For me, this is a problematic area. So, we need to be careful about the books we chose, because you need to decide if you are educating the abled bodied or helping a student to see themselves in texts. One negates the other.
Pick books where the disability is not the sole focus. A character can be disabled and the plot not centre around their specific disability. We are seeing lots of books around disability where the plot surrounds and dwells on a specific disability.
The Parahuman Problem
I was part of day used to motivate Year 11 students. Throughout the day, I experienced several stories of disabled people overcoming the odds and succeeding in life. This didn’t sit well with me. It was putting disability in a strange category as if these disabled people were super human. And, forgetting that they were and are human.
When you live with disability, you get used to the ‘sad eyes look’. People will look at me with the ‘sad eyes look’ and you can see it in the head. They are thinking: that poor child and that poor father, having to deal with disability. Disabled people don’t need pity. They need understanding and humanity. Putting them on a pedestal, just fuels the ‘sad eyes look’. You are parading them as something to be admired or pitied. This parading does do not fuel understanding. Instead it is dehumanising.
We can call this kind of thing the Tiny Tim effect. Disability is used to make people feel something. A ploy to manipulate a person's emotions: to make the person feel guilty; or to make the person feel warmth and pride. Tiny Tim is exactly that. No a real person. Just something to make us feel something. Feeling is not understanding. I don't understand Tiny Tim's personal experience in 'A Christmas Carol', but I have a warm cosy feeling knowing he doesn't die at the end. There's a complete lack of understanding. We have to be careful that we don't turn every child into Tiny Tim. Tiny Tim can be naughty. Incredibly naughty. Cor, we can't possibly give him a detention 'cos, ya know, he hasn't 'ad an easy life. What with his condition an' all that. I see this Tiny Tim effect bounded on Twitter sometimes. Children with SEND are viewed as being Tiny Tim by some and also have a Dickensian effort to paint SEND in rose -tainted terms. There comes a point when the child is lost behind the emotions people attach to a disability. People see the disability and experience the feelings, but they don't see the real child. The person. Does anybody really see Tiny Tim? No. All we fixate on is his disability and the feelings we feel in relation to it. Feelings are strong. Feelings are stronger than understanding. Something that happens regularly on Twitter. Everybody feels, yet not everybody understands.
Be careful of the message you are using in assemblies. We all like an underdog story, but a lot of these stories feature disabled people overcoming the odds. They simply fuel pity and not understanding. They are also problematic because you could read them as shorthand for: you think you have it tough; what about a disabled person, so stop moaning!
My daughter and I get the ‘sad eyes look’ all the time and it is blooming annoying for both of us. That’s because the world has been conditioned to see disability as something to pity. So please don’t pity her or us. If we wanted pity, we'd call our children Tiny Tim.
Diversity is a complex thing and there are no easy fixes and there are difficult questions, issues and ideas we have to consider. We should talk about it. We should explore it, but please don’t view it as a tick box exercise. The English curriculum should contain a range of authentic voices and that’s what we should be exploring all the time. Let’s ditch the idea of a easy fit unit of work that addresses diversity. Humanity is complex, shifting, changing, varied and rich. Let the texts in our schools reflect that, but that involves us as teachers reading and reading around. There are no quick fixes.
The Canon is a chimera and should change and adapt, but let’s focus on the bigger picture: let’s agree that across the five years student will experience a range of authentic voices and it is our duty to explore and introduce those voices, but let’s not place too much emphasis on the engineering of texts to a particular group of students. After all, my daughter has identified with Bella in the Twilight books. Students find the connection in books. Identification with texts comes naturally and without the help of a teacher. Books speak to us. Our duty is to give students a wide variety of texts, watering and tending the field where connections can grow. Allow them to be seen, but also allow to do the seeing, searching and exploring for connections.
There are no wheelchairs in Twilight. As far as I know, Stephanie Meyer isn’t disabled or has ever been in a wheelchair, yet my daughter identifies and connects with it. After spending years of me being conscious of not having enough role models for her, she picks someone without a disability to be her idol. Books are escapism too.
Explore, introduce and discuss diversity but don’t obsess and fixate on it. We can do damage with our good intentions. Easily. We must be careful and cautious with good intentions.
Thanks for reading. I hope this inspires discussion and thoughts around diversity.
Xris
