MyGuide with Guide Dogs

I have finished my volunteer training with Guide Dogs and I have been matched with my first My Guide client. We are going to meet on Fridays just after lunch and mainly go out for walks to give her an opportunity to get out and about.

The service is pitched to volunteers as one that helps clients meet their goals. They might have toned it down a little bit now because I've noticed that most of the clients appear to want to use it as another means of getting out and about. This is a fine goal, and one that I am happy to help out with.

Volunteer training for Guide Dogs

I've been getting ready to work as a volunteer for Guide Dogs UK, as a sighted guide. Although most people know Guide Dogs by their obvious association - guide dogs - they actually provide all manner of services to blind people, including many different types of mobility service.

One of these, My Guide, is the service for which I am in the process of getting ready to volunteer. It matches a blind person with a sighted guide (me) and we meet for 3 hours a week to get out and about and help the person meet certain pre-agreed goals.

I've completed the application, phone interview, reference check, DBS check, online training and the MyGuide training, I am just waiting to attend a half day Safeguarding training before I can be matched with someone and be their guide.

I have wanted to do some volunteering for a long time, and this is an organisation that is close to my heart. Being able to volunteer for just 3 hours a week is great, because I don't have a lot of time to give. I would like to do more, but at the moment, this is about what I can manage. I am planning on squeezing it in on a Friday afternoon.

I'm both nervous and excited about doing this. Nervous because I'll be working in a one on one situation with someone that I may not have much in common with, or may not even like very much. I'm hoping that it won't be the case that I would be matched with someone really grumpy, or depressed, or so elderly that they can barely walk anywhere. But, if I am, it will still be good to do it, and to help them out. People are people and I can work on my social skills as well as feeling good about doing someone a good turn.

Disneyland (CA) - Accommodation for Blind People

Picture shows Mickey's Fun Wheel at Disney's California Adventure park.

Disney used to be famous for allowing blind people to jump to the head of the line. Boy was I keen to experience that with Charlotte! But they have stopped the practice and now blind people have to queue like everyone else.

But Disneyland did give us a few perks when we asked nicely for them. These all took the form of preferential seating for live shows, of which we saw three during our four day visit in California.

Here’s what we saw, what we did and how it all worked.

Fantasmic at Disneyland

Fantasmic is a nightly show in the Disneyland park. The week we were there was expected to be a busy week for the show because it was the first week that annual passholders had re-entry to the park after the summer high season and Fantasmic had only re-debuted a few weeks ago.

We used our Magic Morning (hotel guest early entry) to queue for spots at the Frontierland rope drop. This was so we could get Fastpasses for the 9pm show. Perhaps it wasn’t best use of our first Magic Morning, but we did go straight to the ticket machines (escorted there by “Cast Members”) and got our tickets. That’s step one. To get any special accommodations for the show, make sure you have a Fastpass for that particular viewing.

When we came back for the show, at about 8:20pm, we approached one of the “Cast Members” (I can’t bring myself to drop the inverted commas!) who was manning the roped off queuing area. I told them we had someone in our party with a visual impairment and asked if there was any special accommodation they might be able to provide. First they confirmed we all had Fastpasses, then they seemed to get a bit confused about what sort of accommodation to provide. They are well set up for wheelchairs, but an ambulant disabled person was a bit perplexing. But they were good about it. I just asked if there was anywhere that we could stand to watch from closer so that she would have a shot at seeing the show.

They directed us to the wheelchair queue for the show. For reference, the main queue is on the dock for the Mark Twain Riverboat, and the wheelchair queue is just to the left of this, when you are facing the dock. It feels a bit weird to be standing around with the wheelchair users. It’s times like these I think we should carry her cane with us. I told Charlotte to “act more blind” and she told me she was going to act exactly as she always did. Good girl!

After the rest of the Fastpass audience have gone to their section, they direct the wheelchair users, and their carers, into a separate viewing area. The area is to the side of the main stage, but right at the edge of the water. The wheelchairs line up along the railing and the carers stand behind them, leaning on another low railing. Disney insist on the space in between being left open, and are very strict about keeping non-wheelchair users off the front railing.

Overall, it was a good viewing spot, better than we would likely have got in the Fastpass section. The girls could see over the heads of the wheelchair users, and we got to lean / sit on a low railing. This is very welcome when you are waiting 30+ minutes for the show to start. The side view was restricted because it was far to the side, but it was nice and close to the water. We could see Mickey on the island, and the dragon, but the main action there was too sideways to feel very powerful, and much too far away for Charlotte to see anything. What we did have a good view of was one of the side screens. Much of the show is projections of favourite movies on to a screen of water. They have three of these screens set up, and the wheelchair viewing section is right in front of one of the side screens. Charlotte could see this pretty well. Some of the action is on barges that move along in front of the audience so we had a good view of the barges as they went past. Some of the best moves performed by those on board are saved for the premium viewers in the centre, but it was still a good vantage point.

Conclusion: well worth asking for this accommodation at Fantasmic – for the opportunity to lean on the railing alone!

World of Color

This is the nighttime show at California Adventure park. With dessert packages selling for $80 each just to have a central seat and a plastic box of sponge cake and grapes, I figured this was a show not to be missed.

As for Fantasmic, I set off to get our Fastpasses early in the day. There wasn’t such pressure for passes for this show, quite likely people were keen to see Fantasmic as it had just re-opened. Lucky for us who wanted to see World of Colour.

We returned for the 9pm show at 8:15pm and went to one of the cast members who was manning a roped off area. I asked her what accommodation they might be able to offer for a visually impaired person. She had no idea, but she asked her colleague, and together they went off to call their manager. He was a lovely man who asked us what we needed. I explained that seeing up close was the best possible solution for us, and said that otherwise, we were fit and healthy. He asked if me minded getting wet and when we said it was fine, he took us to the ‘WET ZONE’, plastered with signs warning people that they might get wet. I think we might have been able to walk up near to the spot we had for the show, but bless him, he took us to a small roped off staircase, marked ‘Reserved’ and told us this area was entirely for us.

We felt like total VIPs! We reclined on the stairs, with a (close to) front and centre view of the water. A nearby Cast Member offered us warm hugs and reassured us that the wet zone might be a bit of a mist of spray, rather than a half hour downpour. (It was somewhere in between.) We snapped and connected some more glow sticks, and got ready to watch the show.

Then we experienced our own taste of the famous Disney Magic. A security woman came up to us and sought out Charlotte. She told us that her colleague, who showed us to our “seats” had told her that this child was to start the show. She gave Charlotte a magic torch and showed her a button to press. Charlotte was to hold the torch out towards Mickey’s nose on the Ferris Wheel and press the button. “Not now! You don’t want to start the show now! When I tell you, I’ll come back in 10 minutes and tell you when. In the meantime, you practice with the other button.” She just made it back in time to count Charlotte down from 10 and she started the show beautifully. Sob! During the show, Charlotte told me that it was the most beautiful thing she had ever seen, and she couldn’t believe that she had made it all happen with her magic! We were lucky enough to see the man the following day, so I was able to go up and thank him for making it so special for us.

Frozen at the Hyperion, California Adventure

The third show we saw was the stage musical of Frozen in California Adventure park. We arrived just under an hour before the start of the show. They have a ‘holding pen’ where all the audience waits, in their selected section: Orchestra, Stalls, Balcony. I was going to go for the Orchestra section, but thought it was worth asking one of the staff who was there at the queue. She was happy to take the decision straight away that we should go through the disabled seating area, saying this queue got let in first and were able to choose their seats on arrival. Happy days! There weren’t too many others there, I didn’t even notice the usual array of mobility scooters. Once they let us in, we headed straight for the front row and Charlotte had a great view of the performance.

Dark rides

Another quality that Achromats, in particular, will appreciate is that Disney has a large number of rides that take place indoors, usually in very dark areas. I presume it is due the cinematic heritage of the company, and the fact they are recreating parts of their films. We didn’t spend much time in Tomorrowland, and Space Mountain was closed during our visit, but that section seems to me to be almost entirely indoors. Fantasyland has lots of the kid story rides that take place indoors, we went on Mr Toad’s Wild Ride, Snow White’s Scary Adventure and Pinnochio’s Daring Journey. Adventureland has Indiana Jones, Pirates of the Carribean plus the Tiki Room while even Splash Mountain is more indoors than out.

Overall, our Disney trip was very successful. As a family, Charlotte’s eyesight doesn’t really limit us and we typically carry on and do whatever we choose, with Charlotte joining in too. People don’t realise she is blind and we always watch her closely to her to make sure she doesn’t trip over kerbs and such. We didn’t go there expecting special treatment, but it was great to get a better viewing position at the three shows. She still liked the rollercoaster best.

Swimming Goggles

Charlotte got some new swimming goggles today.

The lovely dispensing optician at Great Ormond Street helped us out with them. I asked about goggles when we were there for glasses. I baulked a bit at the price (£120), but then decided that I should go ahead and get them.

They are made up to her prescription and custom dyed to the full light transmission factor that we want. I think these are 40% with a grey tint. Charlotte doesn't like a brown tint because she says it distorts the colours. I don't understand, but I don't question her judgement of what she can see and what she likes.

One of the best things is how the rubber edges come all the way up to the front of the lenses. Normally, the glass piece is flat on the front, and wraps around the sides towards the strap. These are flat on the front and then the side piece is solid. No light transmission. It might make her a bit tunnel vision, but should be great for bright conditions. I think she really likes how dark they are, but we won't get a chance to test their effectiveness until the summer. 

Hope she doesn't lose them at school!

You can see how wraparound the rubber is here.

White Cane Assessment

Charlotte has had an evaluation for a white cane. I set it up because I want her to have access to all the tools that she might need but I think I was also hoping that the verdict would be: "She's fine, she doesn't need a cane." 

Not so, she does qualify.

We took her to an area with a grassy bank, a step and a pathway; very uneven terrain and quite a steep slope. She tried out a little cane - which was actually too large for her - and she got the hang of it quite quickly. She seemed very pleased to have a new piece of equipment and she also completely understood how it could help her navigate the ground.

The instructor is going to get back in contact and arrange some times for training in the streets around  our house.

I really worry about this step for us. It feels so huge. It is such a visible marker of blindness. People don't see the person, they only see the cane. I want them to know Charlotte first, not her equipment. It is a tool that I want her to have if she needs it, but I really hope that she won't need to use it.

Will this make her less physically adventurous? What about riding a bike, or going for a run? How do you those things as a cane-user? She jumped down the front steps this morning, will she suddenly stop doing that because she wants to feel the surface all the time?

But... it was clear, from the moment she had it in her hand, how much it would help her on uneven and unfamiliar ground. She was so confident with it. When she handed the cane back to the instructor she immediately reached for her hand as a replacement. I was struck by the difference.

I think I need a bit of an attitude adjustment. This is not a marker of blindness, this is a tool which will give her greater independence.

Movie Review

Verdict: who knows?

Charlotte's first trip to the cinema was not a great success. I admit, I had high hopes. After reading a few adult Achromat comments about how they loved the movies, I was expecting that she would be enthralled by the size of the screen and the darkness of the surrounding room.

I let her choose the row we sat in. We had row B. Actually, I lie: she wanted to move forward one more row but I drew the line at the second row. I think she wanted the front row because she thought someone might sit in front of her.

She tried looking at the screen with dark glasses on and off, and eventually went for off. She often chooses to wear them at home when she is watching TV. She seemed to see fine but she was completely bored less than half way through. She had one particular character that she liked so she pointed her out to me every time she came on screen.

I guess she just didn't like the movie.

Press Clippings

More Achromatopsia in the news today. I am in danger of turning this blog into a clipping service!

Local newspaper article about two sisters living with Achromatopsia. This previous article about one of them is better written and is, to my mind, more interesting.

This week, the BBC featured research into retinal ganglion cells: Drug lets blind eyes see light. It does not refer to Achromatopsia but includes a magnificent picture of the retina.