This is a warts and all blog of the ins and outs of life with disabilities. The good and the bad. The purpose of this blog is to educate about disability and to share my own personal experiences to create more understanding of disability.
With occasional dashes of other random geeky stuff for fun as takes my fancy.
Wednesday, 17 February 2016
Ableism 101: Benevolent Ableism
Who's ready for part 3 of Ableism 101? Click through for part 1 or part 2 if you missed those. For this post I want to talk about the really subtle ableism that is the hardest to fight against because it's seen by so many as good and positive and not at all a problem. This is benevolent ableism.
Before I go much further, I want to share an insight on the definition of ableism that I found. On a comment on Dale DiLeo's blog post about benevolent ableism, author Julia Robinson said "...Ableism is like white privilege, we assume we know about what the other person is experiencing, but we need to learn, find out, and change our behavior so they will be able to have full rights and full participation in society." I think this is a a good description because most people don't generally intend to discriminate against disabled people, they merely either don't think about them or their experiences or make misguided assumptions about what a disabled person or disabled people may want or need. They may often think they're doing the right thing, but as the proverb goes: the road to hell is paved with good intentions, and benevolent ableism among all the other forms of ableism can at times make our lives a bit hellish or at least frustrating as hell.
Agencies and Policies
A major form of benevolent ableism is the existence of some agencies and policies that are designed to help disabled people but they have a paternalistic nature which dictate to disabled people rather than helping them. Many of these are created without the involvement or consultation with those they deem they're helping which has sparked many to say "nothing about us without us". A good example would be the agency Autism Speaks. A little bit of research shows a very dark side to this but I don't doubt that many misinformed people think they're really helping autistic people by donating money to Autism Speaks. As far as they're concerned, Autism is an affliction for which a cure needs to be found. But they do not have Autistic spokespeople or organisers and most with Autism are vehemently opposed to Autism Speaks' cause. Autism Speaks do not speak for Autistic people.
I've mentioned infantilisation before. It's any time you treat a disabled person like a child or someone incompetent, for example, saying 'you're so brave!' because we exist with a disability is not the compliment you might think it is. It seems to be a common reaction when seeing a disabled person to take it upon themselves to start 'helping' without asking or being asked. I've heard stories of people taking someone's wheelchair out of their car for them as they were trying to trying to load their wheelchair in the car or vice versa (yes more than one). But even when it's achieving the desired goal albeit faster, it can be very demeaning.
My friend Sarah at writehanded.org pointed out a form of benevolent ableism she experiences a lot a a disabled woman with a chronic illness is unsolicited advice on ways to treat or cure her illness as if she hasn't already tried anything and everything (medically sensible) and is incapable of making her own choices for herself and her body. Again to reiterate, we know that infantilisation and patronisation isn't the intention. We know that the intention is to help, but when you're the one on the receiving end of this on a regular basis, it's difficult to see it as anything more positive than an annoyance.
Basically the moral of the story is ask if they want help. If they do, ask how and then do it. If they don't, leave them alone.
You know the ones. Also known as a form of inspiration porn (I'll talk about inspiration porn in more detail in a future post). The stories that go viral and are meant to give you faith in humanity like the story of the McDonald's worker who stopped working to help a disabled man eat his lunch, or the disabled teen who was made homecoming king or queen even though they weren't nominated to begin with, or the guy who held the disabled man's hand in the subway, or the girl that asked the disabled guy to the ball. Don't get me wrong, I'm not saying there's anything wrong with helping disabled people if they need and want it, and depending on context, the problem is in the reporting, the viral spread, and the way these are perceived by able-bodied and neurotypical people. As I understand it, the disabled man at McDonald's asked the worker to help, so that isn't ableist. What was ableist, was the person taking the photo and publishing and spreading it online without the knowledge or consent of the disabled man. All we know and can see is that the man is disabled. He is objectified for his disability, and the McDonald's worker is lauded a hero for helping someone especially because he's disabled.
The common thread of all these stories is that the disabled people themselves are inconsequential to the story. Only their disabilities matter and the able-bodied people helping them or being nice to them are considered heroes or saints when really, it should be common place to help (when asked) and be nice to everyone regardless of ability. The formula for these stories and articles generally involve quotes from an interview with the able-bodied helper/nice person, but the voice of the disabled person is often absent - because remember, they're inconsequential to the story! When it comes down to it, these stories do nothing for disabled people except continue stereotypes of disabled people as helpless. The best way to tell if one of these stories is ableist is to replace the disabled person with an able-bodied person in your mind - would it still be newsworthy? If not, then it's ableist.
A real pet peeve of mine are cutesy labels for people with disabilities. I've found many are by and large used by able-bodied people or PWDs who struggle with their disability identity (I'll talk about internalised ableism next week in the final instalment of the Ableism 101 series) because they find the word disability or disabled offensive. Labels to make disability more palatable I guess. For example: diffablility, disAbility (FYI: the capital A in the middle of the word is patronising and obnoxious), differently abled, physically challenged, handicapable, physically inconvenienced (yes that is literally a label I've heard used). Some disabled folks may choose to use one or two of these labels for themselves, and that's completely their prerogative, but most I know, including myself, find them condescending and belittling. In some cases they're a distortion of the reality of disability. Case in point, 'differently abled' is in many cases disingenuous. Differently abled suggests for example, that a person who uses a wheelchair and cannot walk or run has a different way than able-bodied people can move from point A to point B. You might say 'but Elle, they can wheel in their wheelchair instead of walking or running' and yes, this is true... but if you give an able-bodied person a wheelchair to use, they'll be able to do that too, but the disabled person still won't be able to walk or run.
In a nutshell, PWDs are human beings who deserve the same kindness and respect as able-bodied people with agency (as in capacity to make their own decisions about their own lives), consent, and without patronising fanfare, and they should be consulted on efforts and interventions designed to help them. If you want to help someone, just ask. If they want your help, they'll accept and tell you how.