Disabled children occupy a very strange space in society, kept distant, infantalised, and disregarded, as though being disabled makes them somehow even lesser than regular children, who are already viewed with disdain and doubt. There’s a notion that disability equates to innocence, that disabled children are magical special angels here on Earth to teach everyone lessons, and that they’ll never grow up. Sometimes, parents actually go to great lengths to prevent their children from growing up, by keeping them away from society and by lying to them about the nature of their disabilities.
I’ve seen a few essays floating around lately from parents justifying the practice of concealing information about their children’s conditions, and I find the practice absolutely repugnant. There is absolutely no reason to hide the facts from disabled children, and it’s yet another example of how parents try to impose their views and desires on those of their disabled children — it’s not enough for them to speak for disabled people without consulting them, apparently, because now they need to define what disability looks like for their own children.
I hear a lot of ‘it would be confusing’ or ‘it’s just too upsetting,’ and this gives disabled children no credit. It also prioritises the comfort of parents over that of their children. The fact is that some disabled children do have disabilities that typically come with a shorter lifespan, or have terminal illnesses, and may well die before they are 18. And that’s terrible — but not an excuse for hiding things from them. Others have complex disabilities that will require lifelong medical attention, and they should be empowered to participate, rather than just being subjects. Everyone deserves the chance to live the richest, fullest life that they can for as long as they can, and not having information about the specifics of your condition makes it impossible to live up to that.
Legally, parents are the ones who make health care decisions for their children. In the modern era, people are starting to recognise that while parents may hold the power, their children should be active participants, with parents talking to their children about medical decisions and including them in choices that, may I remind you, surround their children’s own bodies and autonomy. Similarly, some physicians expect that their patients will play an active role in making decisions about care, regardless of age. The obvious human rights reason for that is that children are people and they deserve bodily autonomy. The more complex reason is that people who get to make decisions for themselves and who are able to consciously choose medical interventions are more likely to comply with treatment, which means they are more likely to have positive outcomes. A kid who willingly takes medication after having a conversation about why it’s needed and what the risks, benefits, and alternatives are is going to do better than a child who’s force-fed drugs by parents who refuse to explain what the hell is going on.
Cognitively, children lack some of the development needed to make complex, longitudinal decisions, and this has been pretty amply demonstrated through research. If a child kicks and screams and says she doesn’t want her broken arm set, I’m going to say we should override her wishes and set her arm because the long-term payoff is a whole lot better than the considerable pain and suffering of not setting the arm. But it’s still necessary to have that conversation, to explain what is going on, to involve her in this decision.
Disability is much more complex than a simple cold or a broken arm. It’s not something that can be cured, and it’s not transitive. That means it’s more difficult to grapple, especially for kids. But that doesn’t mean parents should lie about it. Frank, simple, basic, age-appropriate conversations about the nature of a child’s disability or terminal illness can help demystify it, and make the child feel more engaged in the process of making decisions about how to treat it. A child may independently volunteer an interest in a treatment option thought ‘too hard’ with an uncooperative patient. Conversely, a child who fully understands a situation might refuse treatment that she feels is not worth the payoff — and if that decision is grounded in logic and supported by evidence, as for example a child refusing a final round of chemo after a cancer has recurred multiple times and understanding the consequences of that, then that child should be respected.
People don’t give kids enough credit, especially when it comes to disabled kids. At the same time people spout platitudes about inspiration and special lessons and childlike wisdom, they don’t empower kids with the information they need to take charge of their lives, whether they’re going to die at nine or 90 (disabled kids grow up!). Maybe a three-year-old can’t handle an extremely detailed and complex medical explanation for a situation, but she might surprise people with her understanding. This is her body. She is living this. She knows what things feel like. Lying to kids cuts them out, leaves them at a disadvantage.
Especially in the case of terminal illnesses, people say it’s too scary and sad. What’s scary and sad is undergoing repeated medical interventions and knowing that something is obviously wrong, with everyone refusing to talk to you about it, and then abruptly going into decline and dying with no time to prepare. That terrifies me, and I imagine that it’s terrifying for the young children in this position as well. Conversely, explaining a child’s situation calmly and frankly helps her understand why she’s getting treatment, which helps her cooperate and offer feedback and suggestions, and, yes, it does help her prepare for death. Death is frightening because it is unknown. Being secretive about it just makes it more frightening. Kids are smart. They understand that something is wrong. You can tell them what that is, and make it less scary, or you can act like everything is cool when it is obviously not, and make kids panicked and scared. Your choice!
Image: Jezdec…rider, Honza Soukup, Flickr