I’m going to feel like a bitchy curmudgeon at some point during the course of this post, but I want to draw your attention to something very important: a dangerous precedent is being set by society when we don’t look past certain media representations of disability – and it creates an invisibility that effects the way people live their lives and raise disabled children.
The root of the issue is the perception of disabled peoples’ ages. In the media, we frequently only see children with disabilities or life threatening illnesses. Organizations such as the Make a Wish foundation perpetuate this by creating events such as the SF Batkid, stirring up a media frenzy to make people see children with disabilities and illnesses. It stirs up sympathy, but it focuses on the one instance, instead of considering the wider angle lens of what his life might be like five, or even ten years from now. What if the child who Makes a Wish survives? What then? They grow up and discover that they no longer get special treatment, because they’re not a pitiable sad parable any longer. They’ve become one of the people who gets called a “freeloader”.
Similarly, the media attaches to veterans with disabilities, branding them heroes and then telling their stories for them for political gain. An example of this is the use of Corey Remsburg at the State of the Union in 2014, when President Obama told the story of a veteran, as opposed to letting the veteran speak for himself. When politicians speak about disabilities, they only speak about parents of CWD’s and veterans. By telling their stories, politicians and media outlets are telling their consumers to be inspired, to feel pity, and to be glad they aren’t in the PWD’s shoes.
There’s a large and varied group which these dialogues leave out: adults between the ages of 18 and 50. I specifically worry about those of us in our twenties, trying to figure out how to deal with college, and then find jobs. And our stories, our struggles, and our needs seem often forgotten by the media, and by our own government. If this group were given more attention, if the issues of living a life with a disability were supported rather than ignored, that visibility might contribute to not only better services provided with regard to public transit and public services, but it may also create more acceptance on the part of our peers to see us as whole people and not just as disabled people.
Right now in Belgium there’s a vote being taken as to whether or not children under the age of 18 should be given access to the death with dignity statutes in their country. As the child of someone who died from a vicious terminal illness, I am a strong supporter of death with dignity laws. As a person with a disability, however, I fear the use of these statutes to facilitate the deaths of other people with disabilities, because able bodied society does not accept those lives as valued.
While I recognize that Belgium is making choices based upon specifically terminal illness, I certainly see the possibility of abuse. Systems such as these always have a danger of misuse.
Belgium is doing what it thinks is right by giving these opportunities to children dying in pain, and while I support compassion, I hope that they make sure children whose lives aren’t even started yet don’t get the chance taken away from them. My parents were told that I’d amount to nothing when I was born. I’m sure other people are told similar things when they have children with disabilities.
Fearing for the future is reasonable, but the future won’t get better if you stop the dialogue in its tracks the second a child becomes an adult with a disability.
The vision of disability painted by the media, and by society, doesn’t tell anyone that they can get married, have children, have a house and a dog. Many people in my community can’t do those things because presently, there’s no support available for them. We have to change that.
Living isn’t just for the able-bodied. It isn’t just for those who can work and live without the challenges of a disability. There’s nothing to be done for us, according to many people. And yet, many of us do just that.
Oh yeah, and we’re pissed because we’re tired of seeing things on the media with no mention of what it’s like to actually grow up with a disability. No one wants to hear about how hard it was to get through college. Not just that, but they don’t want to believe in the things we’ve done. Yes, I went to theater camp, I studied horseback riding, I’ve done fencing. I’ve learned archery. I speak French.
The wholeness of my person is not just about being a half blind half deaf woman with chronic pain.
I don’t hold all the answers, but I know that in a society where there appear to be no successful disabled adults, in a society where politicians with disabilities are few and far between, and where disabled role models are touted not for what they accomplished as people, but how they overcame their disability, that we will still need to have concern for the misuse of death with dignity laws in order to “save” people from living lives which society has deemed not worth living. Perceptions of disability are the driving force behind these dialogues, and not until we are able to engage the whole disabled population in a narrative about living, and not about sympathy, can we talk about how to help people die. Until parents who kill their autistic children are blamed for their actions, and parents who drown their intellectually disabled children aren’t talked about in dialogues of “but I understand why”, compassionate care will always have the scent of eugenics wafting off of it.
Spot on. Excellent article.
Brilliantly stated, written and inspired, Elsa, thank you. It’s not possible to take issue with anything you’ve said, although, I kind of wondered why you stopped at 50. I’m a disabled adult going on 60 this year.
The lack of support is painful. I have mitochondrial disease and have been endlessly searching for any resources for adults. They just don’t seem to exist. I noticed today after a hunch that all the websites are partnered with autism speaks.
The forums are full of parents. The blog sites are also full of parents. Even with the internet I’ve only made a single friend with my condition.
The worst part is probably the treatments are all based on children so every time I search for something like pain treatment I just get a bunch of stuff on the difficulties medicating small children without pain killers. I am not a small child, none of this is relevant.
It will probably kill me, but very slowly. I’ve almost run out of treatments already and I’m only 24. I have a hard time opposing the death with dignity things when I am in a position to possibly need it’s help eventually.
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