A blinkered life - Blogging Against Disablism Day 2009

If you're a regular visitor to this blog, then welcome back. If not, I suspect you're here because it's Blogging Against Disablism Day today, May 1st 2009, and you're here to read my blogpost on that. Welcome. Pull up a chair, sit down and enjoy; I may be a while here. and for those who don't know: what's disablism? It's discrimination against disabled people.

Today's blogpost is a bit of ramble about myself and my experiences with disability and disablism. You'll have to excuse this being a long meandering blogpost, but I've got to get some things off my chest, so to speak. It's taken me ages to write this, and not just because I write and type very slowly now.

Firstly, I want to stand up and say I'm disabled. Jesus, that was difficult to do. I have eyesight problems (hence the title "A blinkered life"; pretty clever, huh?). My vision is limited. I don't bother with labels like blind, partially sighted, etc. Some people have complex definitions, and I am dismayed at the need by various bodies to want to pigeonhole somebody so precisely through what I perceive to often be politically correct language and pedantic semantics. I have problems seeing. I might use the label vision/visually impaired (and in other languages I'll say half-blind, because my proficiency in some languages doesn't allow me to have a more nitty-gritty sort of label), but often labels are just labels.

It's taken a long time to accept that I'm disabled however. That's a label that has been difficult to accept. I'd say it's probably because I have difficulty accepting my current limitations. There is hope that my lost vision may return, but given the fact I haven't had it return thus far, I don't know. Am I perhaps being disablist against myself by previously refusing to accept that my eyesight problems are dis-enabling me? I don't know.

For the record, I want to state my left eye (when wearing spectacles) works fine. It's my right eye that suddenly became an issue earlier on this year. I need to state this as it's important that you know, right now, I've got one good eye. Read on, you'll find out why.

But the overwhelming dismissal by bodies is that I'm not disabled, as I have one good eye. I do have a good 'un, but as mentioned, I have one bad eye which is causing me all the problems. So there is the issue of whether this is a disability or not. It has taken me a long time to come to terms with the issue of identifying as a disabled person; there are major redefining issues of identity which must be addressed in my life at the moment due to this damned eye problem. As I understand it, I have a sensory impairment which under the UK's Disability Discrimination Act 1995 covers me and would allow me to be classified as disabled. I don't get the benefits such as state aid or a disabled badge for the car though, but it does cover my arse with regards to employment, for example. I can't be sacked for having problems due to my eye. I'm informed that if I lived in Australia I would get a disabled badge for the car, as they are perhaps more enlightened and recognise one eye visual problems as a disability worthy of a badge. The UK doesn't, so perhaps it's discrimination varying from state to state.

If you're new here, you'll want to know a bit more about me. My name's Damon, and I'm in my late 20s. I'm a linguist, but not by profession. I'm also a writer, but have a day job too. Until February of this year when I lost sight in my right eye, I did not suffer from a disability apart from deafness at a very young age (let's not argue over the semantics of the verb 'suffer' and move on, shall we? You'd get me started on linguistics and the difference between Suassurian langue and parole if you did). I can hear now. It's important to note also that my father has had physical and mobility disabilities (which he may explain himself should he ever get round to doing a comprehensive personal website; it's not my place to speak for him) for nearly two decades. Before these separate, unrelated events, both my father and myself were fully able.

When I was in my teens, my so-called chums at school decided that I was a worthy target of on-going, incessant bullying. As mentioned, I had no disability then. But my Dad did. Therefore it was (in their eyes) perfectly acceptable to bully me in various ways, but the vocal aspects were ironically the most painful, as although bruises heal, psychological scars don't so easily. I was the class "fucking cripple", even though I was physically able. In a modern twist, some of those bullies recently sought me out to add me as their friend on Facebook. No apology has been yet forthcoming from them; they probably don't even remember their vicious taunts. Never mind, let's move on with our lives; only now can I rise above it: forgive, but not forget.

It's interesting to note that under the Disability Discrimination Act 1995, such bullying as mentioned above now classes as disablism and is illegal, even if the victim is fully abled and not disabled, but this occurred before that law came along. I doubt that much has changed amongst kids. It would be interesting to be a fly on the wall in playground in a similar school to see if such discrimination has abated.

So I was quite exposed to the issues of physical disability throughout my teens onwards thanks to my Dad. I know how to strip a wheelchair down (the type he has), and put it in the car, and re-assemble it after a drive. And wherever I went, I was always on the look-out for whether a location was wheelchair accessible. It just became a habit.

I always thought that if I ever ended up with a disability, I would cope fine. I was actually born deaf, due to glue ear, and didn't actually hear until I was about three years old. That never stopped me, and I presume my later interest in languages and communication, coupled with learning British Sign Language at age sixteen, has some deep-rooted psychological cause linked to my inability to hear at a young age. My greatest fear was that I would not be able to read, so never let thoughts of a visual disability cross my mind. Deafness or a physical handicap I felt I could cope with. Besides, as I understandably had only really encountered physical disabilities and hearing loss, I quite simply had no experience of dealing with vision problems. Mayhap because I feared it, because it would deny me access to the written word, I therefore only barely acknowledged the existence of disabilities involving visual impairments, as it was something I feared the most. This was disablism on my part through fear and ignorance.

I had suddenly eye trouble myself in February 2009 with a detached retina. Cause unknown. Despite what you may hear, a detached retina is NOT always caused by physical blows to the head such as through playing rugby or boxing. I'm tired of the number of people (particularly medical professionals) offering their uninformed speculations on the cause of my eye problems. No, I haven't been fighting at the pub and received a killer punch. No, I don't play football and headed the ball. No, I don't do weightlifting (and I've certainly been advised against it now). I want to say to them: Just because I can't see properly doesn't mean that you know more than me about my sight problems and would better be able to guess what's caused it. Do you think I haven't been trying to rack my brains to see if I can pinpoint one incident that might have led to this? In my case it just happened. These things just happen. They do. And your well-intentioned, uninformed guesses won't change that.

They repaired it, but the vision has not come back in the "black zone", as I call it. Technically, that's not the right description of the area of non-sight, because quite simply, in the black zone there's not actually anything. There's nothing. I have only less than half of my right eye working, and it's not working that great. After various hospital visits and appointments, it's now down to the doctor's prescription when all else fails of "give it time", to see if it will eventually work again.

My vision is messed up. I'm told that my eyes may eventually adapt even if the vision doesn't return, but it will take time. But for now, I'm still buggered.

A curious subsequent example I experienced of disablism after my eye problems began comes from a source where you'd least expect it. I phoned the Royal National Institute for the Blind (RNIB) for help and advice. In a nutshell, the impression I got was: "Why are you bothering us? You've got one good eye, use that." It's not as easy as that though. The good eye working in conjunction with a very bad eye means I'm not exactly Hawkeye anymore. You'd think that the fact I've got one bad eye would interest them, but no. They informed me also I'm also not allowed to be registered as partially sighted as I've got a good eye. That's not really a problem for me; as mentioned above, I'm not interested in registering and collecting labels, unless there's something positive to come of it, and as I'm not allowed to consider state welfare benefits (according to the unhelpful RNIB) I'm not bothered. Although a little extra income right now would be helpful. I'm on the sick from work, have been for months, with only statutory sick pay coming in, and it ain't much!

The RNIB dismissed my problems. It's almost odd, that the country's leading charity for people with visual impairments is seeming to discriminate against an entire sector of those with visual impairments, because one eye is still all right. I have since found that I'm not alone in having one good eye and having bad advice from the RNIB. There's another serious case out there I know of (from whom I do not have the permission of to relate the details), but the incorrect advice the RNIB gave to that monocular person could have quite dire and serious consequences.

To get help of any sort, you have to be extra-extra-extra determined to even get anywhere. Why does it have to be like this?

And after that negative reaction from the RNIB as mentioned above, I felt like a fraud for asking for help. My mental state and confidence took a major blow, and psychologically I went downhill. I'm fine now, but I still often get my down days.

OneVision is a charity who have been able to help. Who are they? OneVision is the only UK registered charity dedicated to helping people through the various experiences of sight loss in (or removal of) one eye… and move on! In half an hour chatting with them I was able to finally get my life back on track, and know that I was not alone. They are the people to talk to when it comes to advice on living with one eye. I'm not completely monocular, as I have some poor vision in my bad eye, but they didn't dismiss me as the RNIB had done.

The county Association for the Blind (I don't give out my location on the web, so I'll not name them, sorry) were also great. I have purchased aids from them and got tips which have been able to improve my life; for example I have a liquid level indicator which fits over the side of a cup and tells you when it's nearly full, so less water spills when making tea! I no longer am forced to drink only fizzy drinks from the bottle or water due to inability to make tea. The local association were also dismayed at the RNIB's reaction to me, and the lack of advice given to me by medical professionals on how to live with this problem, and will be providing feedback of my treatment to them, anonymously of course. I don't care if it's anonymous or not myself. One may hope that the RNIB and hospitals make take the feedback on board to ensure they have better advice for people with visual impairments.

I'm determined more than ever to make it now as a writer. I stopped writing for ages due to my eye, but now am writing again, albeit very slowly, and with extremely large size print.

With disabilities, people do make assumptions. I mentioned above about people thinking they can pinpoint the cause of my condition. But now I turn to assumptions that are made about what you can or can't see and do. I don't know if this is a form of disablism or not, but unfortunately, some of the toughest reactions are from those closest to you, such as family and friends. They mean well, but sometimes fail to take in the full range of problems that I currently face.

"Give me that; if you do it you'll only make a mess," says one person as I start to open a jar. Disagreement ensues; my independence and confidence are eroded a little more.

"Where is X?" I say to my relative. "It's there on the table!" - "I didn't see it." - "You saw it earlier," the relative presumes. I just didn't see the item. I had indeed looked at it earlier, trying to make out what it was, but had failed to make it out.

Stepping out the front door, I suddenly stop. I realise that I need my shades to put on over my ordinary glasses as it's too bright for me. I hate bright light now. A relative right behind me shouts (because I'm holding everyone up) "Why don't you go outside and put them on?" Because my eyes don't adjust so quickly from the dark hallway to the bright street, and I can't stand bright lights, if I did step out, I would be overwhelmed by the light and wouldn't be able to see for some time.

When I wear my shades over my spectacles and carry my white symbol cane (US: identification cane), I've had people talk to my fiancée who was with me at the time, rather than me. This is a variant on the Does he take sugar? phenomenon which also has annoyed my father for the past two decades. Classic but rampant disablism.

And then there are the people who go too far or make such a fuss that they do the wrong thing to try to help and only end up annoying me. Perhaps it's a perverse form of disablism.

Let me tell you that speaking louder makes no difference to my vision. So don't even think about it. It makes me want to shout back: I'm blind, not deaf! It's not technically true as I have some vision and have experienced deafness, as previously mentioned, but it would be quicker to shout than "I have not been deaf since the age of three so there is no need to shout, I have a visual impairment which renders.... blah blah blah."

Then there's people being overly cautious with their language which annoys me. At the bank, for example: "We'll look into it" gets changed to "We'll look into it, no, um, what I mean to say is we'll see what we - er, I mean, we'll endeavour to get an answer". They're just messing around to avoid using the word "look" or "see", etc.

If this example above is an example of the future of politically correct language, then heaven help us linguists.

I want to shout at them: Just speak normally, people! I'm not going to get offended if for example someone, in the right context of monitoring something, says what I or anyone else would say in such a situation: "I'll keep an eye on it".

I will however get annoyed if they deliberately pussy-foot around trying not to say things or deliberately confusing the situation with vocabulary modification because using the 'normal' words just might possibly offend. Do you see what I mean?

Naturally I'll get upset if people deliberately set out to offend. Someone in the street walked up to me recently and said to me "Mr Fuckin' Blind Ninja" then ran off. Only the Mr is correct in that statement anyway. I'm not totally blind, I'm not a ninja, and I'm waiting until marriage for the conjugal.

There are often problems navigating places too. Contrast is a good thing, for example on signs, because I can then see things better. That's why I chose to use the black and white symbol for today, as the colourful one was (to my eyes) a happy but colourful blur and I couldn't handle it. At a shopping centre recently, which boasts of being disabled friendly, I sought the toilets. The ordinary and disabled toilets were easy to find, but only if you had normal vision. I found them in the end, but only by chance. The word TOILETS was indeed in letters about five feet high, but they were in a light creamy colour on a white background. I only saw the word when I was directly underneath it, looking up at an awkward angle.

We still have a long way to go in society to learn to accommodate people with disability issues in society. Although I was aware of other disabilities (indeed, having experienced deafness as a child), I had always tended to look on disability as a physical issue, and often ignored the sensory issues. This oncoming of visual impairment was a rude awakening to other aspects of disability, and unfortunately a reawakening of experiencing disablism. As mentioned above, even amongst the bodies that deal with sensory impairments such as the RNIB, they may be ignorant that people have issues which should and do fall within their remit.

To finish, there is one small advantage to disablism. Fortunately people with clipboards in the High Street avoid me (presumably because of my sight issues) and also avoid my father who uses a wheelchair, so we don't get held up by those bloody annoying sales people and the like. I hope this single aspect of disablism does not change.