In which I get Ranty

(subtitle: and lose my shit all over the Internet.)

This is ridiculous. In fact It’s the most stupid thing ever and frankly I probably shouldn’t dignify it with a response but I can’t let it go.

There’s an American company called 3eLove. They sell a range of products with their logo on – the logo is a wheelchair symbol like you see on many different things but with the wheel replaced with a heart. It’s called the wheelchair heart.  I can’t remember if I’ve blogged about it before or not. Their products have a variety of slogans on as well as the wheelchair heart.  In 2012 my parents gave me a sum of money instead of a Christmas present asking I buy myself something special that I wouldn’t usually buy for myself.  I bought myself a wheelchair heart necklace and I really like it (prior to shit that went down yesterday I probably would have said I love it but…). If you look at the pictures of my brother’s wedding you can see I’m wearing it there (I’m not sure how clear it is though). A lot of my friends have quite a few 3elove products but the necklace is the only one I have. I’ve not seen anything else they do that really called to me like that did and made me feel paying postage from the US to here was worth it (seriously, yesterday a friend linked me to one of their tops and told me how much she was paying to get it shipped here and all I could think was “I could buy a second top for the cost of postage if I bought it from a UK place” But obviously that’s not the company’s fault).

So anyway I kept hearing that yesterday (20/01/2014) was going to be Day of Acceptance run by 3elove.  And this apparently was a Big Deal.

I’m not a fan of “awareness raising” and the like and days that do that because I’m not really sure that they achieve anything that can’t be achieved by just being seen and doing and living.  I’ve written about that several times before – here is one example and there is a link to more in that entry. So I was hearing a lot about it and I sent a couple of tweets.

I tweeted:

#dayofacceptance is really poor activism and a thinly veiled way for @3elove to market themselves. Don't Other me this way #Disability

— Emma (@FunkyFairy22) January 20, 2014

and then I sent some unrelated RTs and chatted a bit with a twitter friend about stuff including what I’d just tweeted.

Then I tweeted

I don't want or need a #dayofacceptance. I deserve seven. Monday. Tuesday. Wednesday. Thursday. Friday. Saturday. And Sunday. (@3elove)

— Emma (@FunkyFairy22) January 20, 2014

Here’s the thing: I don’t want one day a year where people go out of their way to accept me and my disability and make a big deal of it. I want to be accepted every single damn day there is and I want it to be normal. You know I don’t want people bothering to tell me that my having CP is acceptable to them.  By making a big deal of it it makes me different to those in the majority and Others me. (Othering is the process by which we use an action of similar to class particular people as different and “not one of us” see this link for more detail).

I suspect a big part of this comes from medical model versus social model and cultural differences. But lets just say that those two tweets which were just random thoughts didn’t go down very well.

By my last count I’ve had tweets disagreeing with me and telling me I’m wrong from four different people.  Two of whom decided to troll me and keep telling me I was wrong. The reason I was wrong? Well, basically because I didn’t agree with them and that was just wrong. I was missing the point. I was wrong. I’ve not been able to determine what the point I was missing was because explanations haven’t been forthcoming let alone ones that actually make sense. (I RT’d a few of them and several of my followers went “yeah… makes no sense.”). Never mind I was wrong, I was hurting my followers by being wrong, and bringing loads of people down.  And most importantly I was completely wrong.

I am more than happy to have these sort of discussions if people take the time to say “well to me I see this as XYZ why do you see it differently?”

It’s also been suggested by the trolls that I need to accept myself.  I don’t know how I can do that when I’ve been in a wheelchair my entire life, would hate to be anything but and would turn down a cure if one should magically appear. My wheelchair is a huge part of my identity as well as being a part of my body.

Acceptance. Dude, it’s a journey not a destination but I’m pretty much all ready there and have been my entire life. Just because I don’t like your day doesn’t mean I hate myself.

I am surrounded by people who love me, help me, support me, tell me off if I need it, wind me up, tease me, laugh with me, cry with me, knit with me, sail with me, and do all sorts of things for me and with me.  They accept me too.  I thank them often for what they do for me and I appreciate it and they thank and appreciate me when I do stuff for them.

But I don’t thank them for accepting me. Because I shouldn’t have to. I am a part of their lives and they are a part of my life because it’s what we want.

If people I have to deal with in a professional capacity (either theirs or mine through my unpaid voluntary work) have a problem with my disability then I would hope our interactions would drip into their brains and slowly bring change and I would focus on that. If people I don’t have to deal with have a similar problem I would still hope the same thing but frankly I’d give them a chance then cut them out of my life. I’ve not got time to change lives, I’ve got a life to live.

Yes I know attitude to disabilty aren’t what they could be.  But in my life time alone  I’ve seen huge changes for the better (and maybe one or two for the worse). That’s continuing.  It’s just more effective if we live our lives and celebrate who we are and our contributions. One day isn’t going to change it.  In fact I worry it’ll make people think “well they wanted me to do it on 20th Jan and I did so they can’t expect me to do it everyday.”

People might remember the old TV ads that used to be on in December time “A dog’s for life, not just for Christmas.”  Well, my disability is for life not just one day and I’d prefer people remember that.

(I’d also prefer people to remember that a post of twitter is just a tweet. It’s not an attack on their views, just a differing opinion and there is absolutely no need for shit like the trolling I had yesterday. But I think that’s probably wishful thinking.)

(first time comment moderation is enabled on my blog – if you haven’t commented before your comment will be held. This is standard to prevent spam).

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.

>Spoonie comments

>My previous post got what I think is the biggest response I’ve had to my blog ever.  Or at least in a long time.  15 comments here on the blog and at least as many others commenting on twitter.  I knew posting something titled “Why I’m Going Off The Term Spoonie” would stir people up but I didn’t expect that.

I’ve been really loving reading the responses and seeing all the different points of view.  Especially the ones that made me think.  I think I probably need to write something else now I’ve had the chance to talk to so many others and also to discover that my views on the use of the term aren’t as unusual as I thought.  In a bunch of my friends I’m known as the one who says what everyone else was thinking but wouldn’t dare say.  It appears by posting this I may have done something very similar – almost exposed the “dirty little secret” of my little corner of the internet.  All in all I’ve seen one person say the post made them very sad and only one person had a particularly negative reaction to it.  Ironically said person admitted they hadn’t read the post on this blog and were just going by the discussion on twitter.  Unfortunately that got a little heated, but you know what? It’s no big deal, it’s only the internet.
I think the key points that have come up for me in this discussion (or at least until I get the time to write and think more) are:
The Spoon Theory is a useful tool for a lot of people but fewer people in my circle see it as part of thier identity or culture than it would at first appear.  Equally the majority of people do recognise that it doesn’t work for all conditions.
It’s medical model based if you go by such things as models of disability.  When I read the comment in which One Off Dave said that it was a bit of a facepalm moment for me.  If you haven’t read my original entry and don’t want to read any more of this, basically that one thing can be used to sum up everything I said. 
 I personally am much more social model orientated when it comes to my CP (I’ve not considered models of disability and my depression but my initial feeling is that may be more medical model) – the social model states that it’s not our medical conditions which cause our disabilities but the barriers put in place by society.  For example, if an event is upstairs and there’s a lift then there’s no barrier to me getting to it and taking part and my disabilities aren’t a huge consideration.  If there isn’t a lift or it’s broken then it’s a barrier in my way and my disabilities stop me taking part.
I also wonder if the medical model aspects are inherent because it was written by a woman with an acquired illness rather than a disability lifelong or otherwise.  Perhaps the medical model aspects are why it works so well for so many people.  Because they view themselves as ill rather than disabled.  That’s not necessarily a bad thing even if it’s what puts me off.  I am now wondering if a social model based analogy could be written but I really don’t think I could do it and I’m not sure it would be a good idea even if I could!
Going back to the “making me think” category, Incurable Hippie posted a link to Cutefying Disability by S.E. Smith.  Well worth a read and some brilliant points relevant to this debate and covering other terms used to identify us as disabled people which are becoming part of our culture and the culture of society as a whole.

Finally, Kali made the very much needed point that it’s good that we have these debates but it’s even better that we have them and for the most part can do so calmly and agree to disagree where needed.  We are much stronger united than we are apart.