Mother of boy with a rare genetic condition sets out to photograph others with disabilities


Gillian Duncan
  • English
  • Arabic

The mother of a young boy with a rare genetic condition has set out to photograph people and animals with disabilities, to show how they are "different, not less".

Em Ray's son Sam, 5, has Angelman syndrome, a complex genetic disorder that primarily affects the nervous system and occurs in one in around 20,000 people.

It is associated with delayed development, problems with speech and balance, intellectual disability and sometimes seizures. People with the syndrome often smile, laugh frequently, and have a sunny disposition. It is usually diagnosed at six to 12 months, when a child would start to show cognitive development.

Sam's complex case is "rare within rare", and found in one in every 375,000 cases, his mother said.

After getting over the initial shock, Ms Ray, 46, who is from the UK and lives in Dubai, set about raising awareness of the condition her son faces.

They are all different people and animals who we don't come across in everyday life

The idea for her picture project came one morning on her way to work, when she spotted a dog in the street walking with the aid of wheels.

“In the time it took me to drive past the dog and get to the little roundabout and go down into the school car park. I turned the car around and I went back and said hello,” said Ms Ray, a photographer and teacher.

“I said you don’t know me, but I have just seen your dog on wheels and I have had an idea. Here’s a little bit about my son. What about if I take a picture of Sam with your dog?”

The idea has since expanded to include other animals and people with disabilities.

People were easy to find.

As member of many groups for parents of children with disabilities, she already knew of plenty.

It is not just people Em Ray set out to capture, but animals with disabilies too. Courtesy: Em Ray
It is not just people Em Ray set out to capture, but animals with disabilies too. Courtesy: Em Ray

She feared locating the pets would be more problematic. But within 48 hours of putting out a call for pets with disabilities, the owners of 80 special needs animals came forward.

And they had all sorts of different conditions - some with two legs, others with three, some which were blind, and others which only had one eye.

There were also animals who were deaf and others with neurological conditions.

She has already held three photoshoots, and the images have been shared on an Instagram page called Smile with Sam.

“We would love people to follow it and make this project a household name. They are all different people and animals who we don’t come across in everyday life,” she said.

The idea behind it is to show how everyone is different.

“They are different, not less, at all. And the sense is that Sam doesn’t see people or animals in any way different than just what they appear to be to him,” she said.

“So it doesn’t matter what you do or what you look like, just as it doesn’t matter what an animal looks like to him.

“Every single person and animal is exactly the same. He just wants to meet them. He wants to touch them and he wants to stroke them. He loves people, and smiley faces. He wants to reach out.”

UAE currency: the story behind the money in your pockets
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The specs

Engine: Four electric motors, one at each wheel

Power: 579hp

Torque: 859Nm

Transmission: Single-speed automatic

Price: From Dh825,900

On sale: Now

What's in the deal?

Agreement aims to boost trade by £25.5bn a year in the long run, compared with a total of £42.6bn in 2024

India will slash levies on medical devices, machinery, cosmetics, soft drinks and lamb.

India will also cut automotive tariffs to 10% under a quota from over 100% currently.

Indian employees in the UK will receive three years exemption from social security payments

India expects 99% of exports to benefit from zero duty, raising opportunities for textiles, marine products, footwear and jewellery

Mercer, the investment consulting arm of US services company Marsh & McLennan, expects its wealth division to at least double its assets under management (AUM) in the Middle East as wealth in the region continues to grow despite economic headwinds, a company official said.

Mercer Wealth, which globally has $160 billion in AUM, plans to boost its AUM in the region to $2-$3bn in the next 2-3 years from the present $1bn, said Yasir AbuShaban, a Dubai-based principal with Mercer Wealth.

Within the next two to three years, we are looking at reaching $2 to $3 billion as a conservative estimate and we do see an opportunity to do so,” said Mr AbuShaban.

Mercer does not directly make investments, but allocates clients’ money they have discretion to, to professional asset managers. They also provide advice to clients.

“We have buying power. We can negotiate on their (client’s) behalf with asset managers to provide them lower fees than they otherwise would have to get on their own,” he added.

Mercer Wealth’s clients include sovereign wealth funds, family offices, and insurance companies among others.

From its office in Dubai, Mercer also looks after Africa, India and Turkey, where they also see opportunity for growth.

Wealth creation in Middle East and Africa (MEA) grew 8.5 per cent to $8.1 trillion last year from $7.5tn in 2015, higher than last year’s global average of 6 per cent and the second-highest growth in a region after Asia-Pacific which grew 9.9 per cent, according to consultancy Boston Consulting Group (BCG). In the region, where wealth grew just 1.9 per cent in 2015 compared with 2014, a pickup in oil prices has helped in wealth generation.

BCG is forecasting MEA wealth will rise to $12tn by 2021, growing at an annual average of 8 per cent.

Drivers of wealth generation in the region will be split evenly between new wealth creation and growth of performance of existing assets, according to BCG.

Another general trend in the region is clients’ looking for a comprehensive approach to investing, according to Mr AbuShaban.

“Institutional investors or some of the families are seeing a slowdown in the available capital they have to invest and in that sense they are looking at optimizing the way they manage their portfolios and making sure they are not investing haphazardly and different parts of their investment are working together,” said Mr AbuShaban.

Some clients also have a higher appetite for risk, given the low interest-rate environment that does not provide enough yield for some institutional investors. These clients are keen to invest in illiquid assets, such as private equity and infrastructure.

“What we have seen is a desire for higher returns in what has been a low-return environment specifically in various fixed income or bonds,” he said.

“In this environment, we have seen a de facto increase in the risk that clients are taking in things like illiquid investments, private equity investments, infrastructure and private debt, those kind of investments were higher illiquidity results in incrementally higher returns.”

The Abu Dhabi Investment Authority, one of the largest sovereign wealth funds, said in its 2016 report that has gradually increased its exposure in direct private equity and private credit transactions, mainly in Asian markets and especially in China and India. The authority’s private equity department focused on structured equities owing to “their defensive characteristics.”

The more serious side of specialty coffee

While the taste of beans and freshness of roast is paramount to the specialty coffee scene, so is sustainability and workers’ rights.

The bulk of genuine specialty coffee companies aim to improve on these elements in every stage of production via direct relationships with farmers. For instance, Mokha 1450 on Al Wasl Road strives to work predominantly with women-owned and -operated coffee organisations, including female farmers in the Sabree mountains of Yemen.

Because, as the boutique’s owner, Garfield Kerr, points out: “women represent over 90 per cent of the coffee value chain, but are woefully underrepresented in less than 10 per cent of ownership and management throughout the global coffee industry.”

One of the UAE’s largest suppliers of green (meaning not-yet-roasted) beans, Raw Coffee, is a founding member of the Partnership of Gender Equity, which aims to empower female coffee farmers and harvesters.

Also, globally, many companies have found the perfect way to recycle old coffee grounds: they create the perfect fertile soil in which to grow mushrooms. 

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Pad Man

Dir: R Balki

Starring: Akshay Kumar, Sonam Kapoor, Radhika Apte

Three-and-a-half stars

PROFILE OF SWVL

Started: April 2017

Founders: Mostafa Kandil, Ahmed Sabbah and Mahmoud Nouh

Based: Cairo, Egypt

Sector: transport

Size: 450 employees

Investment: approximately $80 million

Investors include: Dubai’s Beco Capital, US’s Endeavor Catalyst, China’s MSA, Egypt’s Sawari Ventures, Sweden’s Vostok New Ventures, Property Finder CEO Michael Lahyani

MATCH INFO

Manchester United v Everton
Where:
Old Trafford, Manchester
When: Sunday, kick-off 7pm (UAE)
How to watch: Live on BeIN Sports 11HD

The specs: 2017 Ford F-150 Raptor

Price, base / as tested Dh220,000 / Dh320,000

Engine 3.5L V6

Transmission 10-speed automatic

Power 421hp @ 6,000rpm

Torque 678Nm @ 3,750rpm

Fuel economy, combined 14.1L / 100km

Charlotte Gainsbourg

Rest

(Because Music)

BMW M5 specs

Engine: 4.4-litre twin-turbo V-8 petrol enging with additional electric motor

Power: 727hp

Torque: 1,000Nm

Transmission: 8-speed auto

Fuel consumption: 10.6L/100km

On sale: Now

Price: From Dh650,000

The specs

AT4 Ultimate, as tested

Engine: 6.2-litre V8

Power: 420hp

Torque: 623Nm

Transmission: 10-speed automatic

Price: From Dh330,800 (Elevation: Dh236,400; AT4: Dh286,800; Denali: Dh345,800)

On sale: Now

EMERGENCY PHONE NUMBERS

Estijaba – 8001717 –  number to call to request coronavirus testing

Ministry of Health and Prevention – 80011111

Dubai Health Authority – 800342 – The number to book a free video or voice consultation with a doctor or connect to a local health centre

Emirates airline – 600555555

Etihad Airways – 600555666

Ambulance – 998

Knowledge and Human Development Authority – 8005432 ext. 4 for Covid-19 queries

Lexus LX700h specs

Engine: 3.4-litre twin-turbo V6 plus supplementary electric motor

Power: 464hp at 5,200rpm

Torque: 790Nm from 2,000-3,600rpm

Transmission: 10-speed auto

Fuel consumption: 11.7L/100km

On sale: Now

Price: From Dh590,000

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The team

Photographer: Mateusz Stefanowski at Art Factory 
Videographer: Jear Valasquez 
Fashion director: Sarah Maisey
Make-up: Gulum Erzincan at Art Factory 
Model: Randa at Art Factory Videographer’s assistant: Zanong Magat 
Photographer’s assistant: Sophia Shlykova 
With thanks to Jubail Mangrove Park, Jubail Island, Abu Dhabi 

 
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