Of course there’s always those who think that as long as a page validates and images have an ‘alt’ attribute that their page/site is accessible. I guess in those cases what’s needed is more education and continuing development and learning. No-one knows it all when it comes to accessibility, even the accessibility gurus don’t know it all (and they tend to freely admit that – probably with the exception of useability expert Jakob Nielsen, whose views on useability tend to be rather inflexible), and there’s always more to learn, new techniques, technologies, and opinions on what’s best practice when it comes to accessibility.

The article debunks the usual whining reasons from lazy and/or misinformed developers who don’t get why accessibility is important (you know the kind of thing – accessible design is boring, it’s too expensive, they don’t have disabled visitors anyway, etc. etc.), but most importantly the article gets across that what’s needed is a wholesale shift in the mindset that accessibility’s an optional extra (which of course it isn’t – especially if you’re a business covered by disability legislation).

Probably the most important thing though that the article says, apart from the premise of the entire article of inclusion, is that what we need to get away from (which is what the principle of inclusiveness promotes) is that there is a “them” and “us”. It’s something I’ve long argued is a problem in many areas; that for some reason humans seem intent on separating people into groups and labelling those who don’t share the same characteristics as the majority as “them”. It’s a concept I just don’t get, but that’s another discussion.

Probably my second favourite paragraph in the article is this one:

Once we embrace inclusiveness, it becomes difficult to marginalize others as members of one specific group, such as “users with disabilities.” If we discard “us” and “them” thinking, we stop looking for reasons to avoid accessibility, and we begin to see others’ needs as our own. With inclusion, we don’t dismiss web accessibility requirements, we see them as a chance to create empowerment by embracing our similarities and differences.

As the article says, if you stop looking at groups of people as “other” and concentrate on the similaries we all share, you realise that many of the needs of making a website useable and accessible are common to us all. My favourite line in the article though is this one:

What does your website sound like? Turn off your style sheet and look at what you’ve got. Suddenly the person listening to a website with a screen reader is no longer different from you—your needs are the same.

Good advice, and something we should all probably do with our sites, even if we think we know how to make a site accessible and what accessibility means, because chances are there’ll be quite a few things we’ve missed or simply not considered.

An interesting read.

The last few days I’ve been over-doing it a bit. Normally when I’m at work I don’t go into town at lunch time because the walking’s too much for me. Just walking around the office and around the department’s enough for me. Monday though I developed an urge to go bargain hunting at Primark, which I followed up yesterday with another trip there. Okay, so it isn’t that far away. I managed the walk there and back okay, though I was taking it steady, but it was when I got back to work and went a-wandering off down the corridor to the admin office that the problems started.

Halfway back to the office I felt the crunch in my spine that signals that something’s shifted where it shouldn’t have done. The spina bifida means I have two sets of facet joints that aren’t formed right, so my spine has a tendency to move in directions it shouldn’t, and when it does, and starts pressing on things it shouldn’t, that’s when the fun starts. So I stood there in the middle of the corridor unable to move. It was all I could do to stay upright because my legs turned into blancmange.

When I did eventually manage to move, it was small shuffling steps, because even the simple task of walking became a major feat. I’m not sure how I managed to make it to the office, but when I got there I discovered another problem. I couldn’t sit down. When it moves a certain way I get referred coccyx pain and my troublesome sacroiliac join starts playing up. Perched on the edge of my chair I tried to log back into the computer system. I’d locked my screen before I went out lunchtime shopping, but I couldn’t even concentrate to remember what the hell my password was, because the only thing that mattered right then was that my back fucking hurt! Nothing else mattered. The whole of my universe was filled with that searing pain. I was thinking I’d probably end up having to go home, but then just thinking of how I’d manage that was an exercise in trying to untangle the Gordian knot, because to get there I’d have to sit in a car, and as at that current time sitting was somewhat of a problem…

Plan B was to try another walk, on the grounds that maybe moving around might free something up, so off I went again with the small shuffling, back down the corridor, feeling with every step like an electric shock was running down my spine. That didn’t work, so I opted for Plan C, which found me on my knees on the floor, draped over a chair, with my arms hanging down the other side of the chair. The idea was that if I could get my spine to curve a bit in the other direction and get the spaces between the vertebra to open up a bit, maybe it would free something up. I probably looked ridiculous, but at that moment I really didn’t care. I remember vaguely wondering how the hell I was going to get back up again, but top of my list of priorities was stopping the damned hurting. Getting up again came at that point a distant second. That wasn’t working either though, so there was nothing else for it but to get on the floor.

There’s a bed upstairs on the ground floor in the first aid room, but at that time, the thought of getting upstairs was something akin to scaling Everest, so with gritted teeth I managed to roll off the chair and onto the floor, ending up half under the spare desk, and narrowly missed getting trodden on by one of the surveyors who’d picked that moment to come into the office, but again I really didn’t care. Blessed relief! Flat on the floor and with a little pressure off whatever was trapped, it started to ease a little. I lay there for a while, and then tried to do a few of the gentle physio exercises to get things moving and hopefully get things back into their rightful place. I rested again for a few minutes, and remember thinking wasn’t it in case of a nuclear attack you were supposed to hide under a desk or something, or was it an earthquake? I couldn’t remember, and slept through the recent one anyway. A few more exercises, and then rest again, and then gradually it started to ease enough that I hoped I might at least be able to get up and maybe sit down.

The getting up bit as usual when I end up on the floor for any reason was rather an effort and somewhat ungainly, but once upright I found that I could at least walk with not such small shuffling steps, though I was walking very gingerly. I managed to make it to my desk, and found that I could at least sit down without feeling as though I was sitting on broken glass, and rummaging in my handbag I found that I’d at least got some tramadol in there to tide me over until I got home and could stick another patch on. The afternoon passed in a tramadol induced blur – tramadol makes things kind of “interesting” in that time spreads out and random thoughts creep their way into my head that I have no control over, but at least I managed to last the course, and I managed to get some work done.

The day’s events though taught me a number of things:

1. There’s a good reason why I don’t normally attempt to go into town at lunch time when I’m at work – don’t do it!
2. There may be bargains galore to be had in Primark, but they’re not worth an hour of agony for afterwards
3. Remember to change the damned patches when you’re supposed to!
4. Aged 35 I find myself on heavy duty painkillers that I’ve now found out the hard way my body can’t do without

It was the final point that got to me. This isn’t the first time my spine’s done it’s crunching thing leaving me with severe problems, and it sure as hell won’t be the last, but normally if I’m dosed up with my regular painkillers and such like, I can ride out the storm without getting pain to that extent. Last week I saw my GP about the pain I’ve been getting in my upper spine that isn’t particularly responding to the hefty doses of opiates (I’m waiting for an MRI scan on that), and he said, “I don’t know where we go from here” (talking about the painkillers). I don’t either, but at 35 I’m on a hefty dose of some heavy duty painkillers, and it don’t look like I’m going to be going anywhere without them for a while. That’s kinda scary. Hell, who am I kidding? That’s very scary! Knowing that I rely on a number of drugs to get me through the day with some semblance of a normal life, and that without them things start unravelling pretty quickly is a pretty sobering thought.

If you can’t fix it, you gotta stand it. That phrase follows me round like a bad smell, and just like the story there ain’t no happy ending. There’s no magic cure, so I guess my only option’s to keep popping the pills. I’ve gotta stand it, but it don’t mean I have to like it none.

A couple of weeks ago I was talking about disability, and what it actually means. I came to the conclusion that labels are often just a shorthand for something, something that saves a long, detailed explanation. When it comes to disability, and how I describe myself, it’s a lot easier to say “I’m disabled” rather than “I’ve got X, Y and Z”.

There are any number of labels I can use to describe myself – I’m female, I’m British, I’m thirtysomething, I’m disabled. Those are labels that describe me, or something about me. I can use labels to describe what I do and my interests – I’m a local government officer, I’m a web designer, I’m a student, I’m a writer, I’m a Brokie. All of these are labels I apply to myself; I self-identify with them. In a way they’re a useful form of shorthand. As I said a couple of weeks ago, I describe myself as disabled because at times it’s easier than going through the whole saga of which bits of me don’t work.

Labels can be pretty useful things. Without labels for example how would a parcel find it’s way to you without a label with an address on? How would you tell the difference between a can of beans and a can of fruit cocktail if they didn’t have a label on them? I can’t say I’ve ever tried it, but I’d imagine baked beans and ice-cream wouldn’t go down too well, and fruit cocktail on toast would certainly be a novel meal choice! Even if you can’t read, the label on a can of beans or a can of fruit cocktail will tell you what’s in the can. On the side of the can there’s a graphical/pictorial representation of what’s in the can (usually) that gives you a clue as to what’s inside. We apply labels to people all the time – both to ourselves and others, but the same doesn’t hold true from the label we place on a person.

For a start, there are any number of labels we can apply to ourselves and others. In line with Gestalt theory where the whole is greater than the sum of the parts, the label we attach to someone doesn’t necessarily correspond with what’s in the tin. Describing myself as disabled, there’s a danger that some people might not see past the label and make assumptions about me, based on that label. Some of those assumptions may be correct, others may not be. Back when I was debating what disability meant, in a conversation on a web forum someone said that she didn’t like to define herself as disabled because then she might impose limitations on herself and it may affect her belief in her abilities. I guess that goes back to whether in labelling something you make assumptions based on that label.

Equally, a label can give you a sense of identity. A label can be something you use to describe yourself and associate yourself with others with the same sense of identity, or label. A label could describe a physical attribute about yourself – “I’m female” – or a factual aspect of yourself – “I’m a web designer” – or say something about your interests or your beliefs, perhaps a way you describe yourself as belonging to a particular community.

So what’s the point of the labels discussion? Well labels can be very useful – they can provide a shorthand description of something that would otherwise be very difficult to put into a concise form. They can be enlightening and can tell you something about what’s in that can, or what a person is or what they believe, and give a sense of identity. They can also be limiting though because they can cause you to make assumptions about something, or miss part of the bigger picture.

Just recently I’ve been getting rather wound up about some worrying symptoms I’ve been getting for a few months now. My doctor’s also very concerned about them and he’s referred me to a neurologist for some further tests and stuff, and I’m waiting at the moment for an MRI scan. I was talking to a friend about it the other day though and what’s been going on with me health-wise, and she said something interesting, about whatever “label” they give it. It was that conversation that set me thinking about labels, because whatever “label” the doctors eventually come up with, it doesn’t fundamentally make any difference to me having a name to put to it. Just because it has a name doesn’t mean that the symptoms go away.

By having a label on it you might know whether you’re getting baked beans or fruit cocktail, but if that’s the only tin you’ve got, you’ve still got only what’s inside that tin to eat, just as if you’ve got a collection of symptoms having a label to stick on them doesn’t mean they go away, and you’ve still got to live with them just like you’re stuck with fruit-cocktail on toast for tea. That conversation made me realise something; it doesn’t matter what the label says, I’d be better spending my energy getting on with living with those symptoms rather than worrying about the label.

The ad was shown during a commercial break at the Superbowl, and what I love about it is that it not only is it an excellent example of a company utilising the skills of it’s workforce, but I love the way that it’s about the deaf world and deaf culture, but that the hearing world’s included too, reversing the roles. It’s not making any big political statements, it’s not an infommercial on equality, just two deaf guys trying to figure out where Bob lives.Deaf culture has a long history, and has traditions, conventions, and jokes all of it’s own. I’ve worked with a fair few deaf signers in voluntary groups, and invariably I’ve found if I’ve been in a meeting with deaf signers, or on a training course, it’s the signers who are the funniest people in the room, and they don’t mind having a laugh at themselves.Another video I love is the video for Faithless’s “God is a DJ”, which features Maxi Jazz signing, and in the middle of the video, a group of signers talking heatedly, for no other reason that I can figure out than because he can.

Is it a message that the music goes beyond a dance theme, and that the lyrics go beyond just some catchy little tune? I don’t know. Faithless and Maxi Jazz are masters at writing lyrics though about things that really matter to them, and don’t shy away from difficult subject – their lyrics cover themes like racism, poverty, war, to name but a few. I’d love to know the thinking behind Maxi signing his way through “God is a DJ” though.

A couple of years ago though I was running a training course for deaf people on the internet; mainly looking at how the internet can be used for networking and exchanging information about equality and disability, and how to research information on the internet, but at the request of the participants, covering a bit about anti-virus software, how to spot dodgy sites and scams online, and such like too. Many of the deaf people attending courses run by the group I was working, we’d found were nervous about using the internet, and afraid of “doing something wrong”, and it was because of this my course was slotted into the end of the training schedule, to try and give them a little more confidence in exploring the web and discovering some of the wonders the web has to offer.

At the end of my presentation I showed that Faithless vid, partly as an example of one of the many things, and many types of media you can find online (and yeah, okay then – it was an excellent excuse to play a bit of Faithless ).

As it started some of the participants looked puzzled. One, who had a little hearing and was near the speakers said she could feel the vibrations from the speakers and pick up the beat of the music. “Music” they all started signing, and again they looked puzzled, no doubt thinking, why’s the crazy lady playing us music? We’re deaf! But as Maxi walked into the shot and began signing, one by one their faces lit up, and all eyes were trained on the screen, and on Maxi’s signs.

“I’ve never felt included in music before,” said one guy as we were packing up. “That was nice. I think I’m going to like finding out what’s on the internet!”

And by the way, if you didn’t “get” the joke in the PepsiCo ad, look again – the punchline’s right at the end.

If people want the short version of why I identify myself as being disabled, I usually describe it as that one way of looking at it is that the “disability label”’s just a short-hand type of thing. Rather than saying “I have X, Y and Z, and because of that I can’t do A, B and C (or D, E or F come to think of it either ), it’s at times just easier to say “I’m disabled”, and certainly when filling in forms and stuff they don’t particularly care precisely which “X, Y and Z” you have.

The debate stemmed from someone filling in a job application form, and wondering whether or not to tick the box in response to the do you have “a physical or mental impairment which has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities”? question, which is from the Disability Discrimination Act definition of disability.

As far as the equalities section on forms and stuff goes, a lot of the time it’s a statistical question they have to ask. I work in the public sector and practically everything we do we have to supply equalities monitoring data for, partly as a result of the fact that public bodies now have a legal duty to actively promote equality of opportunity for disabled people. That came into force in 2006, and a duty to prmote equality for other equalities groups has been phased in.

With regard to disability though, for anything employment related, ticking that little box in the equalities section of the form can make a difference as to how you get treated. If you meet the requirements of the Disability Discrimination Act’s definition, it can make a difference as to how you’re treated and your entitlement to certain things. If you’re classed as disabled employers legally have to make reasonable adjustments to your workplace/working role to take account of your disability if it’s reasonable for them to do so, and from a job application/interview point of view, if you’ve stated that you have a disability they can’t discriminate against you and not employ you simply because of your disability. In redundancy situations too where redeployment may be an option employers have to take account of your disability and offer you suitable redeployment opportunities.

The old definition of disability used the “medical model” of disability, and basically defined a disability as having a particular condition or impairment and the effects that has on someone. With the medical model of disability the emphasis is on “curing” the condition, or controlling it, and the place of the medical profession in the medical model of disability is central, and that’s the model the DDA definition’s based on.

With the new definition of disability, which uses the “social model” of disability it’s not about what’s wrong with you, but says that it’s the barriers and prejudice and exclusion by society (whether intentional or not) that decides whether you’re disabled or not. It’s a bit confusing, because the DDA definition uses the medical model of disability to define disability, but the requirement of employers to make ‘reasonable adjustments’, and that on service providers to make their premises and services accessible follows the social model. With the medical model of disability, the disability’s seen as an impairment that needs to be fixed, which okay, if you’re talking about IIH may very well be the case. With the social model of disability though it’s more about people, and society, accepting your limitations, accommodating them, and seeing you as a person, rather than a disability which just happens to have a person attached to it.

Someone in the whole debate which started me off on this ramble did comment that they were worried that if they classified themselves as disabled, they’d start putting restrictions on their self over what they could and couldn’t do. Yes, disability can be a state of mind, and I’m sure we all know/know of people who use the “But I’m disabled!” line to avoid having to do things, whether that’s work or anything else, but it’s only a state of mind if you let it be. I used to be quite active in local disability groups, and I’m now quite happy to stand up and be counted and say “yes, I’m disabled” (though I have to admit it took me a while to get to that point), but one of the alternatives to disabled is differently-abled. Being disabled doesn’t stop me from doing anything (okay, apart from running a marathon or anything that involves moving around too much ) – I do things differently now, and it might take me longer to do something, but my life didn’t stop the moment I decided that yes, I am disabled, and though there are things I can’t do, there are plenty of things I can do.

For me, saying that I’m disabled is partly a short-hand way of saying I do have long term problems without necessarily having to go into the details of it all, and partly about me standing up and saying yes, I have problems, and there might be things I can’t do that you can do, but that doesn’t mean you’re any better than me, or that I’m going to keep quiet about not being able to do things because of people’s prejudices and lack of foresight. People do treat me differently because they see me stumbling around with a wheeled walker – I know they do.

A couple of weeks ago I saw an audiologist I haven’t seen before, and who didn’t know me and didn’t know my history, and he spent the entire appointment talking to me as though I was an idiot, launching into an idiot’s guide to tinnitus and told me I shouldn’t let it worry me. I told him I didn’t worry about it and that I managed quite well with my coping strategies that distract me from it, and he changed his tune completely when I told him that I’d written a leaflet on pulsatile tinnitus which my local audiology clinic now use for their patients because they liked it so much and they hadn’t got a leaflet specifically on pulsatile tinnitus. Once he realised I do have a brain and I’m not about to sit around and watch the world go by, he changed his tune completely. Only the other day at work I was waiting for the lift to come to get back to the office after I’d been upstairs for something, and this woman comes up to me and says very loudly and very slowly, “Do you need any help getting upstairs?” Now okay, she may have spotted my hearing aids and thought she needed to speak up a bit, but even though I’ve got short hair, it pretty much covers my hearing aids and unless you know they’re there, it’s not easy to spot them. Probably she thought she was being helpful, but I certainly don’t appreciate being spoken to as though I’m a child. I guess she was expecting me to say, “Oh thank you, that would be so kind”, but I didn’t, I said (quite politely considering I was fuming) “No thanks, I’m fine…and it’s my legs that don’t always work very well, not my brain.” She apologised, and I said it was fine, it happens a lot, but hopefully the next time she meets a disabled person she might stop to think about how she approaches them, or indeed whether it’s right to approach them and ask them if they need any help. If I need help with anything I ask for it, and generally other disabled people I’ve met say the same – if you need help you ask for it. When you’ve lost a lot of independence, you try and do whatever you can do, within reason, to maintain the independence you’ve got left.

I’ve seen it many times before – the look you get from some guy in a pub you’ve got chatting to who suddenly realises when you stand up that the walker parked in the corner’s yours, and not the little old lady’s at the next table. I’ve seen it in job interviews – you phone a prospective employer and they’re keen to meet you and want you to go in for an interview, but then you get there, and suddenly the job spec’s changed just slightly, not hugely, but enough so you’re no longer the ideal candidate.

I was probably a bit of a stroppy cow before I developed IIH, but since I’ve come to the conclusion that whatever this damned body of mine decides to throw at me, life’s too short for me to sit around waiting for the world to become enlightened. If a shop’s inaccessible to me, I’ll tell them about it, not in a nasty way, but to educate them and point out that because they’re inaccessible they’ve just lost a potential customer, and that there’s plenty more people out there who’ll have similar problems. On the web design forums I hang around on, these days I’m quite happy to stand up to the web designers that don’t think it’s worth their time making their sites accessible to people with disabilities. Quite apart from the fact that they have a legal duty to make their site accessible if they’re providing information or services, or they’re retailing online in the UK, just as physical bricks and mortar shops do, they’re losing themselves potential customers if their sites are inaccessible. I’ve had spells when I’ve relied heavily on my screen-reading software on the computer when my eyes have been bad, and I’ve come across some absolutely appalling sites that it’s just not possible to access with a screen reader.

When I got involved with a local disability group, it was partly to give myself something to do, and partly, once I actually got involved in it because I realised there is a need both to educate disabled people about what their rights are, and to increase their confidence, and to educate the public in general that disabled people are just like anyone else, and the only difference between disabled people and non-disabled people is that for disabled people some part of their body doesn’t work like it should.

I appreciate that not everyone’s confident about standing up and saying “I’m disabled”, or wanting to get involved with the disability rights movement, but like I said, I’ve always been a bit of a stroppy cow, and I do believe that at some point in the future we might reach that utopian world where people are accepted for who they are, without prejudice, whether they’re disabled, male, female, straight, gay, from an ethnic minority, etc… I’m a bit of an optimist like that, but I wouldn’t keep plugging away at it if I didn’t believe that it’s possible to make some progress. It took a hell of a long time for women to get the vote, but it happened in the end, but that wouldn’t have happened if the suffragettes hadn’t stood up and demanded the vote. Like I said, I know that’s not everyone’s cup of tea, but that’s just my take on it.

I might be quite happy to stand up and say I’m disabled, but I’m first and foremost Rachel – everything else is just a label if you like. I’m a person first and foremost rather than a collection of symptoms. Whether you have a disability or are disabled is all just semantics in the end, but of course that can be important in how you perceive yourself. One person in the debate said:

The way I think of it is that on forms and official things I am disabled but I remove myself from the word completely in the same way any one word has a different meaning to everyone. I also think of it as I have a disability which is only a small part of me rather than I am disabled. That sounds like I am completely unable.

A lot of it comes down to confidence, and I can understand that point of view completely. When I was doing a lot of work with a local group for deaf people we ran a series of workshop and training sessions, including one on confidence-building. Of course in the Deaf community there’s a lot of heated debate anyway over whether being deaf is a disability anyway, and Deaf BSL users in particular have a tendency to describe themselves as a linguistic minority rather than disabled. I found that very difficult to understand until I learned more about Deaf culture. Through the various training sessions though I talked to many deaf/Deaf/deafened/hard of hearing people, and opinion varied greatly as to whether they considered themselves disabled or not. When it comes to specific medical conditions opinion tends to be even more fiercely split, and there are a lot of people who still equate disability with the medical model view that a disability is being blind, or being deaf, or being unable to walk. People with a disability tend to fear being “labelled”, and rightly or wrongly the semantics over whether you have a disability or are disabled is a huge barrier for some people, and a barrier than in some cases can prevent them getting some of the help they may be entitled to if they dared to define themselves as disabled.

At the end of the day it’s that defining yourself, labelling yourself as something, that people are fearful of. For me, I’ve got past that worry over defining myself as anything, though I’m not saying it was quick, and I’m not saying it was always easy. There are a number of labels I could assign to myself, for example apart from being disabled, I’m also female, I’m also a student (albeit a part time one), I’m thirty-something – you get the idea. There are all sorts of labels I could pin on myself, and at times rather than the long-winded explanation, I do, but even if you put all those different labels together you still don’t come up with me. More importantly than all of those labels, I’m me – I’m an individual, and I’m unique (”Thank god for that!” cries the amassed audience of the blog – both of you ) and it’s the combination of those labels, and the uniqueness of “me” that makes me what I am, that makes me Rachel. I guess in a way it’s kind of like Gestalt theory – the whole is greater than the sum of it’s parts.

If people have a problem with my disability(ies), that’s their problem, not mine – unless their problem with my disability(ies) makes it my problem, if their attitude to me makes it so that I can’t do whatever it is their attitude is stopping me doing that anyone without a disability can do and take for granted. I’ll work with them to try and educate them, though perhaps educate’s too strong a word. Okay, version two of that sentence goes – I’ll work with them to try and explain to them how their attitude affects me, and I’ll try wherever I can, within the bounds of politeness, to raise any issues I can see that may cause other people with disabilities to be disadvantaged. At times I’ll no doubt get up on my soapbox and ramble on as I do, and some people may find that offensive or think it’s too “in your face”, but as my mum used to say about me, I don’t suffer fools gladly, and if I see what I think’s injustice in the world, I’m not going to sit by and let it pass.

As I said, if someone’s got a problem with my disabilities, it’s their problem, not mine. I’ve accepted that this is how life is, and as someone said in a film I admire greatly, “If you can’t fix it, you gotta stand it”. Medical science hasn’t yet come up with anything that’s going to fix this damned body of mine, so I’ve gotta stand it. So I’ll say it again. Yes, I’m disabled (but that doesn’t make me any less able to do many things), but more than anything else, I’m Rachel.