Realistic

I’ve been thinking a lot over the last week or so about how having a chronic condition or disability shapes your thinking and how this can be taken by those who don’t have the same experience (this is a topic I thought I’d written about follow a similar incident back in 2017 but I can’t find a blog. Which suggests it may have been a social media rant and lost to the abyss).

When I went to lymphoedema clinic recently my legs were still the same size as when I was last seen in clinic in March. And the specialist nurse I see told me that she thinks it’s likely the swelling has reduced as much as it’s going to. No one is saying it’s never going to get any smaller, but the thought is it’s now unlikely and the goal for next time I go to clinic is for things to still be the same – i.e. stable. Which given that heat is known to make lymphoedema worse and when I went last summer my measurements were worse than the time before would be a huge thing.

I’ve known since the very first time I went to clinic in November 2017 that they didn’t expect to be able to completely resolve my swelling and that whatever happened I would need to wear compression for the rest of my life to maintain it. And as much as several of my carers told me how much smaller my legs were and how I was “definitely going to need smaller wraps” in the week or so before, I thought things hadn’t actually changed and I was half expecting this to be the outcome.

I’m fine with it. Things are so much better than they were before I started wearing compression, and I could never have imagined things would have improved this much. If this is it, so be it. I’m more comfortable, transfering easier, significantly less risk of complications and skin breakdown. Time to figure out what maintenance looks like (I’m currently being told I’ll need the same level of compression but my previous nurse told me last year she thought it might be a tiny bit less so who knows).

A few people have heard this news and immediately been pushing me to do more. Telling me how I shouldn’t give up and that I can “prove the lymphoedema nurse wrong.” even when I say that actually I’m fine with this and I don’t want to prove her wrong because this is better than expected one person pushed me again “so, you’ll prove her wrong again.”

But my sitting here saying “this is OK, I’m not bothered if things don’t get any better.” isn’t me giving up, being pessimistic, or negative or any one of a thousand words that me and my disabled friends all have stories of being accused of when we say we don’t want to pursue a cure or can’t do a particular thing, or think a treatment isn’t for us.

It’s me being realistic and recognising that I have done absolutely everything I can and that I’ve been advised to do to manage my lymphoedema. It’s the recognition that the things I could maybe do more of might not achieve any further reduction and if they do are unlikely to improve my quality of life any more.

I realise that everyone is just trying to encourage me and be supportive (and it is people who don’t know me too well who have made the comments). And I know it’s my having lived with CP my whole life that shapes my thinking like that which is perhaps why it’s hard for some people to understand it. But I felt like all the “you can prove her wrong” type comments were putting pressure on me I didn’t need and weren’t what I needed.

As all three of the members of the team I’ve seen have told me managing a chronic condition is a balance and I need to find a way to live my life whilst navigating all it takes to manage multiple disabilities. And that means being realistic and not being upset if I go to clinic next time and things are still stable. Not putting my life on hold whilst waiting for a new treatment, or even a cure that may never come.

An update four years in the making

I used to go to The New Theatre in Oxford a lot but I haven’t been there since December 2014. Long story short we tried to go to see Dirty Dancing for my birthday that year and ridiculous access problems and terrible staff attitudes meant we couldn’t – and I didn’t feel safe trying again.

I wrote about that in several posts back then – Attitude is Everything was the first. A few months later I wrote Third time lucky? and Third Time Lucky? Yes.

We’ve not been back and I even travelled to Birmingham and stayed in a hotel to see a show that I was desperate to once. Even though it was coming to Oxford (I often go to shows in Birmingham with a friend but she didn’t want to go to that one). But this year Kinky Boots is touring and when I tried to book for Birmingham I couldn’t get tickets that weren’t restricted view.

So Mum and I discussed it and decided we would try to go to the New Theatre again.

We went and it was OK. The show was great and I got in and out of the auditorium fine. I was worried about that and didn’t think it would happen. And I was pleased once I was back in the foyer at the end.

The only real problem was that the wheelchair spaces are at the back only and there were a couple of drunk girls in front of us causing a nuisance. It ruined the first half of the show with their attention seeking attitude and keeping talking. Plus repeatedly waving their arms around above their heads and standing up blocked my view. I spoke to the ushers at the interval and they dealt with it (they had already noticed and I’d noticed them noticing but I wanted to be sure they were doing more than notice). They were taken out to speak to the manager and didn’t return. But the ushers came and spoke to me and said they had “chosen to leave”. I was pleased with the way they handled it.

Kinky Boots is a show I’d recommend. I’ve been listening to the soundtrack ever since and one of the songs keeps getting stuck in my head. I don’t think we’d go and see it again anytime soon but I wouldn’t rule out ever going again.

I’m not so sure if we’ll go back to the New Theatre again. It’s a bit of a moot point because at the moment everything they have coming up we’ve either seen, don’t fancy or want to do but can’t do the dates.

But it was still the lift I had all the problems with back in 2014; I could see that from the manufactured date in the lift. And when the access usher came to say hello at the start she asked if we’d been to the theatre. We said we had but not for a few years and Mum explained the problems we’d had. Her comment was that the lift is a bit tempermental but she was surprised I’d had to miss the show because they do have a ramp to put on the stairs.

I wish I could say I can’t believe that four and a bit years after all those arguments about the safety of that ramp they’re still using it and claiming it’s safe. But I’d be lying. All I can say is I won’t be using it and I don’t know if I can risk going there again on the off chance it’s that or nothing.

Blogging and Blogtober

I have been thinking a lot about blogging lately (and about writing in general). And I came to many conclusions, the main one of which was I don’t want to stop blogging. So I decided that I would take part in #Blogtober this month (blogging everyday) because if that doesn’t help me find my love for blogging again, nothing will.

(One of these days I’m going to look back and see how many times I’ve shared similar thoughts on here in the last three or so years. Probably an embarrassing number of times).

My bio on Facebook describes me as “writer, blogger, reader, adviser, crafter, reviewer, wheelchair user, advocate, crip.” I haven’t really updated it for a few years (only to remove “sailor” when I stopped sailing last year). One or two of those words no longer really describe me. But blogger still does.

My twitter bio is “blowing people’s minds just by existing since 1981.” And that’s definitely still true.

It’s annoying that it’s 2018 and the simple act of living a life in a wheelchair is seen by many as shocking and amazing but it is. I think probably that’s part of what’s good about blogging for me – it gives me a place to show my reality of living my life and try to change attitudes (within my boundaries) but it also gives me a space to vent when I need it.

But this month (and this blog) isn’t all going to be about disability, I have other things (books, crafts etc) I want to blog about too.

What Have You Done Today To Make You Feel Proud?

(title is a lyric from the Heather Small song Proud)

A few days ago an acquaintance heard I’d done something and was really impressed. She was trying to encourage me to write about it for Tenants Times because doing so could inspire other people and it was a big deal what I’ve done.

I was frustrated by that conversation because I couldn’t see what the big deal was and I don’t understand why it’s news and people who don’t know me would be interested in it. Plus all I could see was it turning into some form of inspiration porn even if I was the one to write it.

I think she was frustrated by my not viewing it as a big deal and also I don’t think she understood my comments about inspiration porn (I feel I did a poor job of explaining it, in part because of previous conversations).  She commented that I’m worried to feel proud of myself. Which I denied to her and couldn’t be further from the truth.

But here’s the thing: what impressed her (and the two other people in the room) was in part what I did but mostly the fact I did it by myself. And in a wheelchair.

And here’s the other thing (which I didn’t think to share with her). In my circle of friends I can name at least three people who would have decided they wanted to do what I did and gone off and done it by themselves. Plus, it’s something I first did by myself in 2006

A friend has pointed out to me since that society considers this an unusual thing to do alone so maybe that’s part of the reason for her comments. Perhaps it’s something my acquaintance wouldn’t feel able to do.

I don’t view this as a massive inspirational achievement. And she’s right when she says I’m not proud of myself for having done it. But that’s because it’s normal for me. The fact I did it “in a wheelchair” shouldn’t come into it.

As a wheelchair user it’s strange that sometimes I can be doing the simplest thing and I get praise and encouragement when I really don’t need it. And then I get told I need to stop putting barriers on myself when I say access means I can’t do something.  Because the very fact I use a chair makes my existence a big deal.

It’s ableist, in a way.  Because if an able-bodied person had said “hey I did this” it might have turned into a conversation about how she wouldn’t have done it. But it would never have turned into a conversation about writing an article, being inspirational and needing to be proud of myself.

Able bodied people are allowed to be normal and mundane you see. Wheelchair users are either sad people who suffer and need to be pitied or objects of inspiration and awe who are overcoming barriers and our disabilities. We can’t be normal, it’s the law.

It’s pretty fucking othering to be criticised for not being proud of something that isn’t an achievement, I’ve done loads of times and didn’t even have to put a lot of thought into. That reminder that you’re different, you’re not normal and you never can be hits like a ton of bricks. Hearing them talk about how I should write about it to inspire people frustrated me because I’m more than the girl in the chair. Being criticised for not being proud left me feeling pretty shit about myself to be honest.

 

 

 

“She’ll run you over”

There are a lot of allegedly jokey comments that people make about or to me as a wheelchair user.  Usually well meaning and perhaps an attempt at being funny. They aren’t funny.  Most of them never were but one or two may have been if not for the fact that I hear them all the time. 

I’m talking about the “women drivers” comments.

The people who say “do you have a license for that thing?”

Those who randomly see me and go “no speeding!”

And many others.

I often roll my eyes at that sort of thing and let it go because it’s usually strangers and theres no point getting annoyed about that.  When one of the assisted travel guys at London Waterloo put the ramp down and after I drove down it went “who says women can’t drive?!” I asked him if there was meant to be a compliment buried in there somewhere. And he didn’t really answer.  But he was there to get me off the train the next time I went and just said hello.

The comment that really gets me though is made when parents on the street are trying to get their child out of my way. I heard it earlier today and yes the child was taking up space but it wasn’t a huge issue.

It’s “she’ll run you over if you don’t move.”

A lot of kids don’t know what a wheelchair is and don’t know what to make of them. I don’t like the nosy inappropriate questions I get from adults and older kids but if I have the time I was always answer young ones because it’s genuine curiousity and normalising disability (and in my case specifically wheelchairs) is important.
Even if you tell me to or give me permission to I’m not going to run your child over (and I have heard “I’ll let her…” and “I’ll tell her to…”before). Comments like that make my disability and my chair something to be wary of. I’m sick of being made out to be the big bad wolf to be scared of. 

I am not a threat to get your child to do what you want. Stop using me as one. I’m a person the same as everyone else – I just spend my life on wheels.

So Take Me As I Am

(title is a lyric from the Meredith Brooks song Bitch)

A couple of weeks ago I was asked how I’d enjoyed a show I went to by a member of staff there who I know. I had enjoyed it but there had been one thing that had happened – which was tangentally access related – that had really irritated me.  It was totally inconsequential and unlikely to be repeated but it had had an impact on my enjoyment and they asked so… I said “If I could just make one slightly bitchy point….”

More recently than that I discovered that the actions of someone else have left me with a huge mess to sort out. I feel more than a little screwed over and beyond frustrated as I did everything I was supposed to do but the person who was supposed to do the next part didn’t and because they didn’t do it at the correct time they now can’t.  And I’m the one who will lose out if it’s not done so I need to do it.  Their failure makes me look bad.

I was ranting to a good friend about that and I said “I know that this is really bitchy but I hope X happens because of this”

She stopped me and said “that’s not bitchy at all.” and made some other comments about thinking I’m acting like a bitch when I’m not.

I say stuff like that all the time when I complain or raise issues.  Phrases like “I don’t mean to be a bitch but…” cross my lips all too frequently.  And really they shouldn’t.

Complaining or raising issues in a constructive or fair way is nothing to be ashamed of. It’s only right and I’m sure that if able-bodied people had to deal with half the crap I have to they wouldn’t be half as calm and dismissive of it as I can be.  Recently a few things have happened which have made me realise just how abnormal my version or normal really is.

A third issue – one of disabled toilet accessibility – reared it’s ugly head. I really thought all the able-bodied people around me were blowing it out of proportion.  It was just one of those things. It happens and it’s irritating as hell and it really shouldn’t but what can you do?!  There were a couple of ways I could work around it and I’d almost never go there again anyway as I was unlikely to have a reason to.  I knew I should complain about the issue and have something done but it happens a lot of places and I was in the middle of dealing with the second incident I mentioned above and just didn’t have it in me to do anything about it.

When one of the people running the event (not the venue) asked me about it I did tell her about it. I told her it both was and wasn’t an issue and had to stop myself talking it down. I don’t think I did a good job of that. And one of the things I told her about was how I worry that people will think I’m alway moaning or never happy.  That I’ve heard those phrases along with “ungrateful” and “argumentative” many times and “you have to understand we’re doing our best” and “we don’t really get many wheelchair users” are among the stock excuses.  It grinds you down.  I wonder, sometimes, if part of the way I so often almost apologise for my complaints or put myself down by phrase it as “being a bitch but” is because subconsciously I think that’s the only way I’ll be taken seriously.  I think the person I was talking to go it and she reassured me they don’t think that about me.

Only.

Later in the session another member of staff wanted to ask me about it. Fine. They wanted to know – was there actually a problem or was the problem that I have a new wheelchair and I’m not used to it yet?  I took her and showed her how it wasn’t big enough for my chair and she got it. But talk about proving my point!

I wish that was my only example of that sort of thing from recently.

It’s not – last Sunday a well known pizza chain refused to serve me because they had a booking for a short time later that they’d chosen to book all of their (small) downstairs for and they had no lift. They had no desire to come up with a solution (I could see from how they had it laid out that a small rejig could have fitted a table for me and my friend in too) and didn’t even apologise. It was clear that they considered I had the problem not them.  And a request I made early this week to another organisation for an explanation why something had happened resulted in my receiving an email Friday that didn’t explain it and basically suggested I should put up and shut up. Again, I was the one with the problem not them.

My friend above who made the comments about thinking I’m being a bitch when I’m not is right, I should stop doing that.  But it’s a bloody hard habit to break when society is desperate not to take me as I am but to blame me for it instead.

“Special Needs”

Language around disability is a really tricky thing. Some terms are acceptable to some people and completely unacceptable to others. Some are fine for disabled people to use amongst themselves or to refer to themselves but problematic when used by strangers.  And there are times when disabled people argue amongst themselves about the terms.  People first language and identity first language are two of the biggest culprit’s there.

One term that I’ve been saying I don’t like and arguing against for the last few years is “special needs”  I can explain why I don’t like it but it’s something I find others always agree with although some people do come to see my point after I explain even if they don’t agree with me.  Basically as a disability specific term it makes no sense.

For the last few days I’ve been reading The Curious Incident of the Dog in the Nighttime by Mark Haddon.  I finished it this evening and it’s safe to say it’s one I’ll be thinking about for a fair while.  The main character is Christopher, a teenager with Asperger’s Syndrome.  I’m not qualified to comment on his portrayal – I liked him as a character but I’ve heard and read various things from people who are on the autistic spectrum that it’s quite problematic. Which unfortunately isn’t that unusual when a disabled character is in a book.

But that’s not what I wanted to blog about.

There’s a moment in the book when Christopher is talking (as narrator) about the term “special needs” and it basically sums up what I’ve been saying about why I don’t like the term. It was a big “yes!” moment of validation for me. So instead of explaining my dislike I wanted to share the quote. It’s one of those that if I was sharing a link to it on twitter I’d probably just caption it “this.”

“All the other children at my school are stupid. Except I’m not meant to call them stupid, even though this is what they are.  I’m meant to say that they have learning difficulties or that they have special needs. But this is stupid because everyone has learning difficulties because learning to speak French or understanding Relativity is difficult, and also everyone has special needs, like Father who has to carry a little packet of artificial sweetening tablets around with him to put in his coffee to stop him getting fat, or Mrs Peters who wears a beige-coloured hearing aid, or Siobhan who wears glasses so thick they give you a headache if you borrow them, and none of these people are Special Needs, even if they have special needs.”

– From The Curious Incident of the Dog in the Night-Time by Mark Haddon (chapter 71, page 56)

Hate isn’t Funny

On Saturday Mum and I went to a Jack Whitehall gig in Oxford.  He definitely wasn’t the best comedian I’ve ever seen but most of the time he was pretty funny.  Once or twice he pretended to have forgotten his script and at least once he really did forget his script which was a bit frustrating.

Unfortunately however he also made several jokes that I thought were right on the line of what is and isn’t acceptable when it comes to disability.  I can take that.  I think I’m a lot more flexible than some people are on the sort of comments I find acceptable and I thought a couple of times “ooooh that’s a bit ableist but it’s just about ok.”

And then he came back from the interval used the R Word (r*t*rd) once and did one joke that went way over the line of ableism. Which is very definitely unacceptable.

So I wasn’t overly impressed and I very definitely stuck him in my “comedians I don’t want to see again” box.

And then Wednesday night Omid Djalili was performing in our very small theatre here as a warm up gig.  He was also here Thursday but Mum and I went on Wednesday.

I’m watching him and I’m sort of enjoying it but I’m also thinking that if you took away Jack Whitehall’s ableism he was probably a bit funnier.  They were very very different shows however and I don’t think it’s really comparable.

I did think Omid Djalili was probably pushing the boundaries of acceptable race jokes but I wasn’t really sure about that because of the whole thing where specific groups of people joking about themselves make things acceptable that might not otherwise be.  I’ve fallen foul a lot of that and joking about my disability so it’s not appropriate for me to comment  on that issue.

Then he was talking about an encounter he’d had with someone in the car park outside.  He used the R word to describe them and made several very very ableist comments.

And then it was the interval and the show continued.

Right at the end he made the most inappropriate disability related joke I’ve ever heard (which I’m not going to share).  It wasn’t designed to be funny.  It was designed to make us laugh at a stereotype of disability.  And it was horrific.

He made it pretty clear he thought there weren’t any wheelchair users in the room (I was sat at the back) and that was why he made the joke then went on to joke about how he doesn’t chose venues that have wheelchair access.

I was so angry I was practically shaking.  I gathered up my stuff to leave but didn’t actually leave because by the time I had it together he was finishing his act.

I’ve been going to live comedy for years – I went to the comedy club at my uni nearly every week for three of the four years I was there.  I must have seen hundreds of different comedians.

Some joke about disability and get it right.  Some don’t joke about disability, maybe they’d prefer we didn’t exist or maybe it’s just a case of they don’t know how to appropach it.  Some comedians joke about disability and it falls flat because it’s just a shit joke (one guy at the comedy club at uni made a massive deal about coming to me before the show started and letting me know that he had a joke about disability and it was just one joke and he hoped I would be ok with that and not offended.  It wasn’t in the least offensive.  Unfortunately however it also wasn’t funny).

And sadly some comedians prefer to get cheap laughs by throwing around hate speech like the R word and similar and mocking disabled people.

And this was the first time a comedian made me that angry.   Ever.  I made a complaint to the venue.

I’m pretty upset that it came to that.  But a small part of me is surprised that in over 12 years of semi regular live comedy this is the first time it’s been necessary.  I doubt it’ll be the last.

I hope, one day, comedians will realise that ableism isn’t big and it isn’t funny.  In the mean time I’m just glad that the next show I’m going to is a musical.  Because that should be a lot safer.

(edit: I have posted a follow up blog here)

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.