A year or so ago (maybe longer) I wrote a few posts explaining a few disability terms.  I called it my disability glossary.  I did intend to expand it to cover other terms but as often happens life got in the way and I didn’t.  Last week someone mentioned my having posted about ableism on facebook and wanted me to define what it was. I struggled a bit when put on the spot in person but said it was basically “like racism but for disability.” This is my attempt at a better definition

Ableism is sometimes called disablism.  The two terms are basically interchangable – the difference in my opinion is one of models of disability. Disablism is more of a social model term and ableism is a medical model term. (I have definitions of the two models here). Having written that I realise that the fact I’m a proponent on the social model of disability but prefer the term ableism probably doesn’t make sense.

Ableism is based on the assumption that it is better to be non disabled (what has previously been referred to as able-bodied) than to be disabled.  It’s discrimination based on ability. Simply put it’s discriminating against me or another disabled person because we have disabilities.

It might be something said (the person who asked me to define ableism was referring to a status about ableist comments). For example

  • “oh I wouldn’t have noticed that you don’t when you’re normal”
  • “[our disabled toilet] is full of cleaning stuff because it isn’t needed by disabled people often.”
  • “all wheelchair users are lazy”

It might be in the way I’m treated

  • ignoring me in the queue at the pub and serving two people behind me
  • having to phone to book something because wheelchair tickets are only available by phone and then constantly playing a “you should do this online” message as I hold.
  • made to sit separately from my friends because you can’t accommodate my wheelchair in the regular seating.

Ableism can also come in because of assumptions about what disability is.

  • Finding out on Monday morning a group of friends went out at the weekend and didn’t ask me because they assumed I wouldn’t be able to join in.
  • The question “how many times a day do you have carers visit you?” rather than asking “do you need carers?”
  • Grabbing my wheelchair and moving me where you think I want to go rather than asking if I need a hand.

Ableism is often done thoughtlessly.  In many ways that’s easy to deal with. Point it out and if it was truly thoughtless it’s often quickly resolved.

But all too often it’s done to shock or to get a laugh.  Comedians are pretty bad at that.

Thoughtless or deliberate ableism is wrong and it’s painful to experience.


Quick and Dirty #Disability Theory

I posted on Facebook earlier this afternoon that I’d given someone a spur of the moment elevator pitch length explanation of the social and medical models of disability and they’d understood it without my needing to clarify any further. This was, and is, a win. Especially because I really believe they actually understood it and didn’t just say so to shut me up. Then one of my friends posted that she doesn’t speak disability.

And apparently I have blog entries on here dating back to 2006 but have never defined the models. Despite having both a social and a medical model category on here.

So here goes. This will be quick and dirty but hopefully makes sense.

The medical model of disability states that impairment and disability are solely caused by medical conditions and are not influenced by anything elses. This, I believe, is much more commonly used in America. According to the medical model I am a person with a disability and am disabled by my cerebral palsy as a result of which I use a wheelchair.

The social model of disability states that it is the barriers that society puts into place and the attitudes of those around me which disable me. It acknowledges the fact that yes, I have cerebral palsy and use a wheelchair but that if I’m in a fully accessible and supportive environment I can and do access things the same as everyone else. This model would say that I am a disabled person and my disability is caused by the failings of society to provide equal and fair access that meets my needs.

There are other models of disability such as the charity model (sometimes known as the tragedy model) which depicts disabled people as a victim of circumstances beyond their control for which they need to be pitied.

Further confusion can be and is caused by the language of disability. It’s also sometimes the cause of debate or even argument between disabled people. Persons with disabilities (often shortened to PWD) is a medical model term as I said above but it’s also used by some people who prefer it as it’s person first language and shows they are more than their condition. Others (myself included) prefer to use disabled people regardless of which model they subscribe to because it’s identity first language and shows what they identify as.

And then there’s the argument about whether or not the a in disabled and disability etc should be capitalised (i.e. disAbled, disAbility) to bring the focus onto our abilities and what we can so rather than what we can’t. Personally I hate that.

Finally there’s the people who say you shouldn’t use the term able bodied because we’re all able but in different ways. The term nondisabled is the most commonly used and it’s the one I like but it’s difficult for people to understand. And to be honest no other minority describes the people outside of it by what they’re not so I don’t know if it will ever fully replace able bodied. Another term that is sometimes used is temporarily able-bodied or TAB (some people use currently able bodied, I don’t mostly because I heard of TAB first and the acronym for currently able bodied would be the same as where I volunteer and so confusing). This refers to the fact that statistically speaking most people will become disabled as some point in their lives whether due to illness, accident or simply aging.

My own journey with disability theory and the language of disability is ongoing and ever evolving. If you go right back to the beginning of this blog you’ll see the term PWD used a lot but it’s a term I no longer use. I’ve used TAB a lot in the past too but I’m not sure I’ve done so for years. Neither term feels relevant to who I am and where I am now.

Nothing About Us Without Us

I’m trying to work my way through a series of disability specific terms and especially some disability specific concepts and define them for my blog. A sort of glossary of disability according to Emma if you will.

I’ve also been asked to contribute monthly to Bea Magazine. My first piece went up there today and happily the subject I wanted to write about for them is also something I would have written about in my disability glossary. (Although I hadn’t actually planned for it to me the next entry in my glossary). I’m sure all of my readers are now breathing a sigh of relief that they don’t have to read two lots of my drivel on the subject.

My article is Nothing About Me Without Me.

The article contains a much better explanation with detailed examples etc. And people seem to have liked it. Or at least a couple of people liked the Facebook post of the link, my Dad said it was interested and Mum said it was good (but they are obv biased).

But basically nothing about me without me (or nothing about us without us) is a very commonly used disability rights term to declare the fact that no decision should be made for or about a disabled person without their input. Obviously for different people and for different levels of disability the way decisions are made will vary. And some people will never be able to make a complex decision such as where they live. But they can still have a say. Even if its just whether they want their bedroom painted red or blue. And even if they can’t actually speak.

Inspiration Porn

Tonight is the yearly Children in Need appeal here in the UK. BBC One is taken over by a telethon for about seven hours. The idea is to raise money to help disadvantaged children. So you see video clips of children from other countries walking miles for water, young carers helping their mum or dad and disabled children doing things too. And it’s a given that those children will either look sad or have their story told using emotive language such as “suffers from…” Or “whilst other children are playing little Johnny must…”

Interspersed with those clips are famous people doing silly stuff, frequent updates on how much has been raised and brief mentions of members of the public doing sponsored silences. Locally a lot of schools have had PJ days to raise money. Those can sometimes be funny and a child I was a big fan of Children in Need.

Now? I hate it.

This is what’s known in disability circles as “inspiration porn”

Inspiration porn is something which is designed to highlight the differences disability brings and invoke pity. In some cases this pity is to raise money for charity, in others it’s to encourage people and sometimes it’s designed to make them think. It’s a bit like the ultimate embodiment of the phrase “there’s always someone worse off than you”. I am disabled and therefore, automatically, my life is terrible, I am an object of pity and you have it much better than I do.

The phrase that will be heard a lot on telethons is “can you donate to make a difference to a child like little Johnny” invariably after they’ve just told you how terrible his life is. The inference being that if you can’t you obviously don’t care about him.

It’s the picture doing the rounds on Facebook with the “the only disability in life is a bad attitude.” Attitude is huge. But I can’t put on my Bolshie face, wheel up to the local shop that doesn’t have wheelchair access and stare the step down until it magically turns into a ramp and lets me in. And as much as I do my damnedest not to let my CP stop me that doesn’t make me amazing and I’m sure as hell not inspirational. The idea behind that I believe is that it makes nondisabled people think “if she can do that with all she goes through why am I moaning?” And such like.

Or it’s the advert at the train station which shows a little boy in a wheelchair with the phrase “he wishes he could leave this behind too.” And the details of how to donate to one of the disability charities. Because clearly he’s trapped by his chair. The idea as with all of these is to make you pity him. Only when I saw that poster I was sat in my wheelchair. On the train as it pulled out of the station. Fail.

Disability does make me different to other people. Wearing glasses makes to me different to other disabled people. The fact I like to dye my hair, live alone and am a big NCIS fan makes me different again from other glasses wearing disabled people. It’s a fact of life and a characteristic of me as any other for anyone else in the world.

I knew, growing up, that at least one of the organisations I was involved with had received money from Children in Need (although I don’t think it was ever featured). But I never realised that I was one of those kids. One of the ones who were shown “leaving the confines of their wheelchair behind for an hour once a week whilst they ride a horse.”

I’m glad I didn’t realise. It took me a long time to become the vaguely confident outgoing person I am now. It would have taken longer if I’d grown up with the knowledge that my life meant I was an object of pity who needed charity lives a terrible life and who is held up to others as a reason why they’re lucky. Because obviously the fact I survived being deprived of oxygen at birth at a time when the medical world wasn’t as developed as it is now means I’m terribly unlucky.

More than your charity I want your support. And for me that comes from being treated with respect. From people recognising who I am and my individuality, not making assumptions and letting me be me. That’s going to make more of a difference to more of those “children in need” then all the money donated in it’s entire 30+ year history.

If you want to help people donate direct to organisations and bypass those events that thrive on making people feel bad.

See the girl, see the truth, see the life. Accept me and those like me. I’m here living me life. Like you I’ve only got one shot at it and I don’t have a choice but to do what I do. I’m here to enjoy myself, not to inspire you or be pitied. Open your eyes and say no to inspiration porn.