Seeing an independent future for children who are blind or visually impaired

NCBI residential camps teach living skills to children who are blind or visually impaired

 

At first glance they are like any other group of teenagers, all engrossed in phones as they sit around the lounge of an apartment in Maynooth, Co Kildare, trying to book a taxi through the FreeNow app.

But it is soon noticeable that, as they swipe, scroll and tap, each one holds the phone to their ear. Every touch of the finger is “announced” by Voice Over on their iPhones and it takes a double tap to activate an icon.

The youngsters deftly flicking their screens are among 12 participants in a four-day residential summer camp run by the sight loss charity National Council for the Blind Ireland (NCBI) for children who are blind or visually impaired. Ranging in age from 11 to 19, they are learning independent living skills, from making up beds, ironing and cooking, to grocery shopping, using public transport and visiting a bank branch.

When it comes to household chores, “we have to motivate them to do it – they’re typical teenagers”, says Caroline Lane, head of NCBI’s children’s services. But unlike typical teenagers, they didn’t as small children watch their parents doing such tasks and learn to copy them that way. How could somebody with no vision grasp the concept of ironing, for instance, until it is explained in detail to them?

“We slow everything down,” she explains, because normal family life can be too hectic to give these children the time to figure out everything they could do for themselves.

Emily Ginty, Eveline Lutere and Cormac O’Toole using assistive technology such as Seeing AI at a residential summer camp run by the NCBI for visually impaired children aged 13-18. Photograph: Alan Betson / The Irish Times
Emily Ginty, Eveline Lutere and Cormac O’Toole using assistive technology such as Seeing AI at a residential summer camp run by the NCBI for visually impaired children aged 13-18. Photograph: Alan Betson / The Irish Times

 

Using the Liffey Hall block of student accommodation on the campus of Maynooth University, there are three “campers” and two NCBI staff in apartments consisting of five single, en suite bedrooms and a communal living/kitchen area. The priority on arrival was for the participants to be orientated in their new surroundings and decide themselves on how to organise the kitchen and their own bedrooms to make life workable for them.

As Lane and I talk in one bedroom, there’s a minor drama outside the door because a child has lost his cane and can’t leave the building without it. First rule – remembering where you put things. The constantly shadowing staff resist the inclination to “rescue” these children from such scenarios and step in only as necessary.

It takes a lot of courage and confidence to tell people they’re vision impaired

“Parents are aware that we can be a little bit tougher on them here, trying to be realistic,” says Lane. “Society is the biggest barrier for these children. They are constantly having to overcome everybody else’s idea of what a blind person might be. People see a cane; they can’t see the person.”

It’s day two of the camp and this morning they are ordering taxis to take them to the local Tesco. Camp co-ordinator Edel Doherty leads a discussion on the use of taxis, asking about the drawbacks.

“You have to pay,” points out Lawrence Noonan (15) from Midleton, Co Cork.

“You can’t play the music you want,” quips Ruben Collins (15), from Newcastlewest, Co Limerick.

Both fair points, to add to Doherty’s suggestion that availability or wait time may be a problem. Then there’s the question of how to identify themselves and ensure a successful, safe pick-up.

It’s their responsibility, they’re told, to let a taxi driver know in advance what their needs are – that they must be collected at the door and guided to the car. The importance of being advocates for themselves is a common theme as they are naturally inclined not to want to draw attention to their disability.

“It takes a lot of courage and confidence to tell people they’re vision impaired,” says Lane.

The previous evening’s assignment had been for each group of three in the self-catering apartments to plan what food they and the staff would need over the next three days and input a shopping list on a phone or tablet. Some used the “click and collect” system, others will be guided as they push trolleys up and down the 26 aisles of an extraordinarily large supermarket.

But first this morning, every one of them did a parkrun. This is timetabled for each day of the camp with the help of sight guide volunteers led by Joan Ryan, visual impairment ambassador with Parkrun Ireland.

NCBI staff have noticed when familiarising children with walking routes that many of them tire very quickly. As with any teenagers, they tend to be ferried around in cars, Lane points out, but with few opportunities to move around independently, it’s a bigger challenge to get fit.

“It’s a run, not a race,” they say of the 1.7km parkrun through the Maynooth campus. But try telling that to Ruben, who powers his athletic, 6ft 2in frame along the route in an impressive eight minutes and five seconds to be first one home.

Sight guide Andy Herring, attached by a tether on the wrist, is pushed to keep up with Ruben, who was born with low vision but lost all sight last September. The pair finish the session by going back to sprint the last 100m again, in 16 seconds.

Victoria Alves de Oliveire ironing at a residential summer camp run by the National Council for the Blind Ireland. Photograph: Alan Betson / The Irish Times
Victoria Alves de Oliveire ironing at a residential summer camp run by the National Council for the Blind Ireland. Photograph: Alan Betson / The Irish Times
Lawrence Noonan learning bed-making skills from Caroline Lane at a NCBI residential summer camp. Photograph: Alan Betson / The Irish Times
Lawrence Noonan learning bed-making skills from Caroline Lane at a NCBI residential summer camp. Photograph: Alan Betson / The Irish Times

In the supermarket, Emily Ginty from Edenderry, Co Offaly and Evelina Lutere from Dublin, both aged 11, are pushing a trolley together, with their shopping list divvied up between them on their iPad and iPhone respectively. They are guided to relevant shelves, where they can use the Seeing AI app to scan the bar code of a product and be audibly informed of what it is, its weight, its ingredients, etc.

It’s a test of memory to reconcile what they have put in the trolley with the shopping list. When Evelina is told she is missing one item and is struggling to work out what that might be, she and Emily listen back to the list one more time together.

“We haven’t got the honey,” declares Emily and they’re guided to that section before heading for the checkout. A careful feel of the row of tactile lines on the edge of every bank note – two gaps in them on a €20 and none on a €50 for example – helps them to identify the correct money to hand over.

Back at base, the youngsters all rustle up their own lunches, using some of the items they have bought at the supermarket.

Victoria Alves de Oliveire (19) from Ballyleague, Co Roscommon and Rafiat Agbona (18) from Newbridge, Co Kildare are complimenting themselves on the healthy salad they have prepared and sharing a laugh about their “click and collect” experience.

After being dropped by the taxi, they had no idea where to go. They were directed up the escalator to the service desk but it turned out the shopping collection point was downstairs. Somebody went with them to show the way, but “he walked in front of us and was too fast”.

Then they discovered they needed their own bags. “A random lady came up and said ‘I have a spare bag’,” recounts Victoria.

So, what did they learn, asks Doherty, who overhears the conversation as she prepares her own lunch.

“Bring a bag,” replies Victoria promptly. And, knowing what they know now, they would have asked the taxi driver to wait while they picked up the shopping.

We looked so lost, I am sure it was hilarious for them

It has also reminded them that members of the public with no experience of sight loss will not automatically know how to guide and they need to tell them to take them by the arm.

“We looked so lost, I am sure it was hilarious for them,” laughs Rafiat, before she gets into good-natured banter with her flat mates about whose turn it is to wash, dry and put away.

“I will wash the stuff for lunch,” volunteers Rafiat but adding, “I hate washing dishes – I feel the residue of the food on my hands.”

Welcome to the real world of independent living.

Participants: ‘I love the freedom’

Victoria Alves de Oliveire (19) hopes that this stay on campus at Maynooth University will be a trial run for her plan to return in the autumn to start an Arts degree after the Leaving Cert results come out.

Born at just 23 weeks in a hospital in Brazil, she explains that her eyes weren’t covered in the incubator and the lights burned her retinas. Living in Ballyleague, Co Roscommon, since the age of six, she is used to helping out with her two young brothers, aged eight and just nine months.

Eveline Lutere and Emily Ginty washing up and drying dishes at a NCBI residential summer camp for visually impaired children aged 13-18, learning independent living skills. Photograph: Alan Betson / The Irish Times
Eveline Lutere and Emily Ginty washing up and drying dishes at a NCBI residential summer camp for visually impaired children aged 13-18, learning independent living skills. Photograph: Alan Betson / The Irish Times

“My parents have always been the kind of people to treat me the same as everybody else. They have always said, ‘Don’t let your disability hold you back, it doesn’t change you as a person. It doesn’t limit what you want to achieve.’ They have always let me be independent and I think that really helped me to be okay with myself and grow my confidence.”

Her advice for those who encounter a visually impaired person who looks as if they might need help is to “ask is there anything you can do and don’t jump in”. It’s quite possible they don’t actually want to cross the road they’re standing by.

When the rest of the population judges people instantly by the way they look, how does Victoria size up people? “You can tell a lot about a person by their tone of voice,” she replies. “But I try not to judge people too quickly.”

Shane Earley (13) from Cloverhill, Co Roscommon, also says he goes on voice, admitting that he finds it off-putting if it’s “too squeaky”. But “my main judge is personality, so I’ll normally talk to a person for a while before deciding”.

The youngest of three children, he has never had sight. “Fortunately”, he says, as that means he doesn’t know what he’s missing. “I am used to it, I accepted it.”

This is his first time on an NCBI residential camp: “It’s brilliant, I love the freedom.”

His pet hate is people “trying to do too much” for him, “I need my breathing space.” His parents, he says, are good at showing him how to do something once and then letting him get on with it.

What he finds “shocking” is that so many people don’t seem to know what his white cane is. But there’s no question, he adds, of him ever wearing dark glasses, “to be a walking stereotype”.

Parents: ‘Why not give her a chance to get away from family?’

Iveta Lutere admits it can be hard not to be over-protective of her daughter Evelina (11), who is blind as the result of a rare eye cancer that was first diagnosed when she was 1½ years old.

“That is one of the main reasons why I am sending her away – that she can learn something from other people, all on her own,” says Iveta from her Dublin home, while Evelina is at the NCBI camp, It’s her third time away from the family this year, after trips to Camp Abilities in Co Kerry and Barretstown in Co Kildare.

Evelina, who has a younger brother, Daniel (nine), and five-year-old sister, Rebecca, has also had to undergo surgery for an unconnected ear condition.

“I thought, this is the time in Evelina’s life – she is a big girl, very independent, very intelligent, very strong person – why not give her a chance to get away from family and just forget?” says Latvian-born Iveta.

After two more years at St Joseph’s Primary School for children with visual impairment, Evelina will go to Mount Temple Comprehensive school. While teachers and other professionals assure Iveta her daughter will be well able for mainstream secondary school, “I am struggling mentally already thinking now, how will she?”, she says.

That’s why, Iveta adds, that the NCBI summer camp is “probably a milestone for me. When she goes away, she learns something and slowly I can see that she is developing.”

Patsy Collins doesn’t consider herself over-protective of her only child Ruben (15), who was born with low vision, but says she does need to be cautious, particularly since he lost all sight last September. “It has been a big change.” With limited vision in one eye up to then, “he functioned very well; he was reading, he was writing and he was getting around independently.

“He was always very adventurous, did everything very early – walking, talking, climbing – so it has never held him back and I have always let him lead on.”

Now, “although he is quite independent, he is more dependent”, says Patsy. Yet he is also at an age where he doesn’t want to do anything with a parent.

Ruben has always been mad into sport, so they have a treadmill at home and she has also tried to go out running with him, to help him keep his fitness up. Although a runner herself, she finds it quite a strain to run with him in their home town of Newcastlewest in Co Limerick.

“There are lots of obstructions and obstacles in your way; you’re on and off footpaths and footpaths are never straight. It’s only when you’re outside and looking out for someone that you realise what obstacles are out there. And anyway, “he doesn’t want to run with his mother”.

Future concerns

She doesn’t have the slightest concern about him being away at the NCBI camp – “I don’t even hear from him now”. But she can’t help worrying about his future.

“They are so supported when they are young” – through family and services. She hopes Ruben will go on to third-level after doing his Leaving at Desmond College in Newcastlewest, where all pupils use iPads so he’s no different in that respect – the Voice Over app helping him with assignments and e-books.

“You just worry about them going out into the big bad world and how they are going to survive. Academically he’s bright. It’s general stuff, like using public transport in the big cities, you worry about their vulnerability.” But that’s the whole point of things like the NCBI camp, she adds, “to prepare them”.

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