I am not sure if I had ever used or heard the word infantilize in a general conversation until last week and then suddenly it was the ‘word de jour”, as teachers and bloggers bemoaned the tendency of others to infantilize people with disablitites (pwd). Sure enough I went with the crowd and used it in a conversation with my very own pwd, clumsily and self consciously admittedly, and even then I had to explain the context to her. She just laughed at me.
Chelsea’s level of disability means that everyday she has to be cared for “like a baby”. Her physical needs demand it. But it would be a brave person who tried to put this baby in the corner. She’s way to vocal and opinionated for that, something the average baby in spite of the crying has little mastery of.
The prompt for our discussion was this much shared Morgan Freeman meme that seemed to make the rounds last weekend.
Reactions on some of the advocacy blogs and sites were swift and pretty universally negative with the “infantilize” word front and center in most comments. Chelsea and I talked about the quote and the polarizing comments it elicited and her thoughts focused on two things.
1: Disabled is such a broad term that can and often is subdivided into visible and invisible or physical and cognitive disabilities. If a person can respond or run away from an attacker, if they can hear or see them coming, or if they can understand that they are in danger then it is a very different context to someone who can’t. Is the power that is required to attack someone who is unable to run, respond, hear, see or understand lesser? YES. So the quote is accurate, while still being incredibly patronizing in the way it portrays pwd as being at the very bottom of the personal power totem pole.
Did it offend her? no not really, because she is one of those who can neither run or respond, she wouldn’t be able to shout for help, and if her wheelchair was facing the wrong way she wouldn’t see them coming. Powerless, not totally, but certainly no Rocky.
2: Why did they use Morgan Freeman? – because he is famous, will attract attention, is from a minority group(black) is disabled himself? His membership in the famous black men group is clear. An often very good, sometimes award winning actor with a great pedigree, his fame is undeniable and face instantly recognizable and attention grabbing. And I informed her, he has fibromyalgia and is therefore disabled.
Really? said Chelsea somewhat bemused.
In an Esquire interview last year Freeman confirmed that he has fibromyalgia and that sometimes the pain is so bad it has stopped him piloting his plane, he can’t sail as well as before and when he plays golf he has to swing his golf club with only one hand. Chelsea laughed at first and then we talked for a long time about the term disabled and how it is way too broad. If you look up disability in most dictionaries there will be two main definitions.
So first comes any form of physical or mental condition that usually includes a reference to the condition being permanent and then it’s defined as something that is recognized by law. The legal, or benefits entitlement definition of disability. It makes me think has disability become the medical equivalent of the “one drop of blood” concept of race with the legal definition for benefits and minority status almost more important than the medical reality?
The problem with the single disability label, is that the same label is used to cover people who can run faster than most of humanity (eg: Oscar Pistorius ), those like Mr Freeman that sometimes, but not always experience pain, it includes behavioral conditions that you grow out of when you reach adulthood and whose status are fiercely debated (the ADDs), and it also covers the traditional blind, deaf, congenital conditions and full paralysis like my very own pwd.
So, taking a leaf from that opinionated man. The problem seems to be that the most noise about infantilizing the disabled comes from pwd who are at the opposite end of the scale to those whose disability would render them “very or quite” powerless to respond. Often these advocates are able enough to live independently and their very vocal and attention grabbing advocacy for the disabled is based on their own level of capability, and their disability. They reinforce constantly that their challenges don’t stop them. And I admire them and support them but realistically they don’t speak for the “disabled”. They speak for themselves and for their own challenges.
Do I think of pain conditions and ADD as a disability, no. Are amputees that run like the wind disabled? Well it’s hard for me to say yes, but then if they don’t have a prosthesis it’s an easy yes. So then for me the issue is, if you are rendered “whole” by the provision of a device are you still disabled? With only one label it easy for it to become a horrible game of mine’s bigger or more severe than yours. For me disability is like porn I can’t necessarily define it, but I definitely know it when I see it.
In the UK, I know from blogs and the news that the battle and campaigns for disability benefits are fierce and the meager funds make a huge difference in offsetting the challenge and cost of living with disabilities. Spectrum disorders and the controversial ADDs swallow a huge percentage of the disabled / special needs budgets in education and the minority status and benefits a diagnosis brings make the label an advantage for some by giving them increased access to services and opportunities . I’m not ignoring or negating the real challenge that these conditions can and do represent I just get frustrated that a kid with problems concentrating on tasks or socialization or behavioral challenges is viewed under the same umbrella term as someone with a profound cognitive disorder or cp or yes my very smart and whisperingly vocal , can’t breathe on her own, quadriplegic kid who has to be spoon fed and have everything done for her.
So Mr Freeman, we essentially agree. I believe it is a horribly low display of power to attack people with disabilities, but then I hate the idea that anyone would chose to attack anyone else period, and especially just because they have more power, perceived or otherwise.
But that’s a topic for another day…