In popular narratives, disabled children seem to be framed continually as either one of two things. They are either precious angels sent to Earth to teach us all a lesson, or they’re burdens dragging on the lives of their parents and family members, who are forced to make tremendous sacrifices for them. Neither is true, and both are incredibly harmful not just for disabled children, but also for the adults who they grow into — because strangely enough, disability doesn’t stop at childhood, and many disabled kids grow up to become disabled adults, living in a world surrounded by hateful rhetoric about disability. Some are even fortunate enough to encounter the words and comments of their own family members from their childhood, which is often unnerving and upsetting.
Casting disabled children as angels has obvious problems. It serves to objectify disabled persons, turning them into lessons and learning experiences and secret messages instead of human beings with their own needs, wants, wishes, and dreams. By suggesting that disability is somehow angelic, people skip over the realities of disability, some of which are harsh, frustrating, and demoralising. Insisting that disability is somehow a different category also allows people to maintain inaccessibility in society and in their attitudes.
After all, they’re precious little angels, but they don’t need to have the same public access as regular children. They’re going to be kept permanently in an infantile state, so they don’t deserve an education. They’re here for learning experiences, and thus don’t need to live independently or interdependently — it shouldn’t matter that they can’t get around town without an aide thanks to access barriers, or that they can’t get enough financial benefits from the government to live on their own. This approach to disability turns children almost into living dolls, rather than people, suggesting that they can be admired and petted and talked over and about, but that they don’t need to be addressed.
Likewise, the burden narrative is equally disgusting, though for different reasons. Children, like adults, are sensitive to resentment and know when they’re not wanted or respected as human beings. When they’re repeatedly approached as burdens, as difficult responsibilities, as hardships, they get the message that they’re broken, that something is wrong with them, that the world would be better off without them in it. They also get the message that family members view them with contempt, anger, resentment, sometimes even jealousy, as for example when younger siblings get angry that someone else is sucking up all the attention.
Imagine growing up in a setting where you are continually reminded that you are only tolerated, that your presence isn’t really desired and everyone wishes you would go away. Disabled children are often saddled with the responsibility of parental sacrifices and lifestyle changes, even if those had nothing to do with the child. Instead of talking about the lack of social support for disabled children and how this makes it challenging to be a good parent and make strong parenting decisions, people instead suggest that disability itself is a burden, that this is the problem that needs to be fixed.
What happens when these children grow up? When they start searching for their names on the Internet, or encounter old press clippings, or get asked by friends? What happens when they start encountering things their family members said about them and their disability, and begin to realise, if they hadn’t already, that their families felt extremely resentful and angry about their very existence? Every time I see a ‘poor beleaguered parents’ or a ‘she had to kill her son because of the circumstances’ story, I grit my teeth, because it devalues disability. It suggests that disabled children aren’t human, and that their needs were never important, not in the big picture.
It hurts to discover that you were hated and resented for something that is not in your control. And lest people think it’s acceptable to speak poorly of people with disabilities that interfere with the ability to communicate, there are many ways to communicate, and people who don’t necessarily speak or hear can still pick up on plenty of nuances of tone, of body language, of conduct. They know when people resent them and are angry about their existence, and they internalise that. And, thanks to the patronising way disabled people who need communication boards and other assistive communication tools are treated, many are restricted when it comes to expressing the way they feel about the people around them and how they are treated.
Having a disabled children can present some unique social and personal challenges, but this doesn’t make that child a burden, and she shouldn’t be cast as such. It’s demeaning, degrading, and horrific, and says a great deal about the way nondisabled people view disability and disabled people. Having larger conversations about why society turns on disabled people and won’t help disabled parents is important, but these conversations need to be able to take place in a value-neutral context. It’s not impairment and disability that are bad, and it never was. Instead, it’s the way society approaches these very real, natural, and simple variations on human life — we are a large and genetically diverse species, and our genes don’t always encode as we expect them to, or think they should. Sometimes we have accidents or illnesses later in life that create impairments, changing the way we interact with the world.
These things don’t make some of us burdens on our families or society. They’re just things that happen, and they should be treated as such. Raising kids of any ability status is hard. Let’s talk about that.
Did you like this post? Please consider supporting me on Patreon to help me keep this ain’t livin’ alive and well.
Photo: Twin Work & Volunteer, Flickr.