VEEing Usher Syndrome, and with a sense of humour.

I was googling images on Tunnel Vision and Usher Syndrome when I came across these and a cup of sugar.


so dolly the sheep had Usher’s, too? rotfmao


to be this young and think he’s a piece of beefcake would surely mean one has tunnel vision, ha

at a degree of approximately 10 degrees out of 90 each eye, this is what we see (without the black…. it’s entirely an invisible field)


the biology of usher syndrome



i find these excerpts from Usher Life UK to be bittersweet and hilarious


Dear Santa, I have Usher…

By members of usherLife egroup

What do we want for Xmas? When we were kids, we would write a “wish list” to Santa, but for Usher people of all ages, this seems to linger on. They were asked, via the UUK egroup, what they wished for Xmas to help with their Ushers. Obviously a cure/treatment for our RP is on the top of our wish list, but this won’t happen for a while, so that’our “in the meantime” wish list…

The name says it all, doesn’t it? We would LOVE to have an automatic driven car to take us anywhere where we want to relieve the pressure from our partners, friends, etc.

One of our most popular wish – a super, sexy and thin spectacles that can see in the dark, magnify in/out to read small print, train departure boards, etc. Also auto-lens adjustment to enable us to adjust to the quick light/dark conditions. And on-lens flashing warning signs of incoming people, small children, objects, traffic, etc. An every Usher’s dream gadget…

One of the most frustrating things about the advancing technology of mobile phones is by throwing in everything from built-in digital cameras to kitchen sinks into one little device is that the LCD screen is STILL inaccessible for many of us. We desperately NEED font/size adjustment, inversion of background into a negative mode (white text on black background), magnifying modes to be able to read the irritatingly small icons and “fixed” text as well as reading SMS messages. Come on, you mobile phone manufacturers, we need those accessible features now!

If you’ve seen the cartoon series and the film, then you’ll know what the Closeau-type hat can do – bring out flashing warning signs, mirrors, lights and maybe a robotic hands to do hands on communication.

An invisible (white) cane that has the magical power to divert people from crashing into us and also divert cars, buses and lorries from running us over.

Shoes with sensors to warn and stop us falling down steps, or in manholes, or tripping over things and bumping into small children. Also could help with crossing roads.

TV with the facility, via remote control, to configure subtitles – font, size and position.

One of the key issues about Usher and deafblind people who have a guide dog is that they are not trained as hearing dogs for the deaf, so they would love to have a “smart” guide dog that can do BOTH roles and maybe do a bit of hands on… sorry paws on, communication?

BBC to axe See Hear! in favour of Usher See!. Say no more…

A device that enables us to find things around the house such as TV remote controls, pens, coins… and maybe partners who are hiding from us!


I have one of my own!

Lost In Translation

When one is afflicted with Usher’s, at one point the 3-D dimensions slowly disappear and we are disillusioned on what we think we understand and what is real.

I often mistake these words:

diet for dick. Are you going ON a dick? (me: gasp! Have you been in my mind recently? Them: Oh, you seemed to be desperate to be into the thing. Me: *blushing* well, it’s not like i can put out an classified ad for a dick… Them: Oh my god, Christine. It’s DIET not dick, you’ve got a diiiiirty mind.)

cookie for cocaine: this is a very blurred, white line sometimes, no pun intended. ( Them: Would you like some cocaine? Me: I don’t do those kind of stuff, way too dangerous. Them: What’s so dangerous about them? Me: I fear I’ll become delusional, a bag of anxiety, addicted and desperate. Them: You just had one an hour ago and you don’t look like that! Me: an hour ago…? I didn’t sniff a line! Check my nostrils… Them: laff, laff, laff. *stuffing a cookie in my protesting, open mouth.)

there’s way TOO many moments in my Usher life where I’ve gone hours thinking we had a conversation about that particular thing, then later to find out I was looooost in translation and based an entire conversation thinking one thing, them knowing one thing. Man. I do wonder if sometimes people just ended our conversations abruptly because they thought i was loco? I even had some people who had the gall to tell me I was stupid (apparently they didn’t acknowledge I had Usher’s) and call me low-function. Jeepers creepers. I look forward to more hilarious lost-in-translation moments, hopefully they’ll think the same, too. Us Usher’s know how it is.

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4 Responses to VEEing Usher Syndrome, and with a sense of humour.

  1. Digression: says:

    Your topic is very intriguing and humorous. Please allow me to digress by asking you a question. Your answer would help me understand the culture of deaf-blind people much better. Do deaf-blind people consider deafness as a disability as well blindness as a disablity? In other words, do they consider deafness and blindness as a double disability? If in this regard, do deaf people who are __not__ blind erroneously call themselves
    non-disabled? Please do not hesitate to openly discuss. I want a better understanding about deaf-blind people’s viewpoints. Any additional information would be greatly apprecaited.

  2. Dianrez says:

    Add to that: long whiskers for hands so they don’t hit things while using excited signs language. Lamps that stay glued to tables, teacups that don’t fly off into space, and unidirectional pop cans that always hit your lip with the hole side forward. Bumpers on your arms so you don’t hit door jambs. Warning radar for walking through commuter people traffic. Tunnel vision is such fun!

  3. LOL at Dianrez’s comment. Thanks for sharing 😉
    As for Digression’s question, I think I’ll do a blog on that tomorrow in your honor 😉 I actually think that is a complex and a question that needs to be cut open and probed. Thanks for the idea.

  4. Reich says:

    *chuckle* This post really resonates with me and I couldn’t help but laugh at how true it is for me! I do not have Usher’s Syndrome, but I am losing my vision … I can thank a lot of bad medication management as a child for that! I’ve never really thought of myself as a Deaf-Blind person, but the truth is, to some extent, I guess I am. I also have some fun (*insert sarcasm here*) neuromuscular stuff going on that makes me a bit clumbsy sometimes and can make my right arm pretty useless whenever it feels like it. I have a pretty twisted sense of humour about my own situation and I often joke that I’m the best entertainment one can have. The spoken English that I do hear I often misunderstand. I usually know that what I’ve heard is not what has actually been said, but for the life of me, I’m usually lost. I once thought a friend said, ‘I can’t have an orgasm in front of an ATM.’ I can assure you, that’s not AT ALL what she said! I often make the same mistakes whilst reading text. And as for one of the comments that someone made about hands needing whiskers so that they don’t send things crashing whilst signing excitedly – I was at a party recently and had a group of new people around me, watching a story I was telling. I was very animated, but (my mistake!) was still holding my drink in my left hand. In short order, I sent it flying across the floor. Woops!

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