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Change Makers

Published on 27 September

Change Makers: #ChangeInSight is a global initiative to raise awareness of the realities of vision loss

Using art as a creative vehicle, three artists living with a visual impairment have come together as part of the Change Makers campaign to create a visual and audible artwork to shine a light on the challenges faced by people living with vision loss.

A staggering 2.2 billion people live with vision impairment worldwide1. Retinal diseases are now affecting more of us than ever before2,3.

Vision loss can have a devastating impact on people’s lives, making even the simplest tasks seemingly difficult – walking, driving, eating; visual impairment also affects wellbeing, social inclusion and quality of life4. But in the face of this adversity, there are many stories of hope and courage, of bravery and triumph. So, what is it really like to live with low vision, how does it feel, what are the shared experiences faced?

Our Change Makers campaign aims to raise awareness of the impact of vision loss on daily life. Using art as a creative vehicle, three talented artists living with vision impairment – Dave Steele, Rachel Gadsden and Baluji Shrivastav, OBE – have come together to create an audio-visual performance including poetry, painting and music. The music was composed, performed, and directed by Baluji Shrivastav, OBE, with the Inner Vision Orchestra. The performance expresses the impact of vision loss on people’s lives – the common experiences, the emotions felt and the courageous, persistent human response to overcoming the challenges faced.

With Change Makers, our goal is to bring the communities, the experiences, and the challenges experienced by people living with vision loss to the forefront. Ultimately the campaign will recognise individuals who have contributed to the community and we hope that through this activity we will create a platform for solidarity, experience sharing and discussion on eye health.

Join us on our journey as we celebrate Change Makers and drive awareness of the need to do more for people living with vision loss through a series of videos; check out our YouTube channel for audio described options, to ensure community inclusivity.

Learn about the Change Makers campaign, Rachel, Dave and Baluji’s experiences and the inspiration behind their performance.

Explore the artists behind the Change Makers campaign

As an artist who has lost a lot of my sight, I am often asked: How can you still paint? I hope that Change Makers will empower those who similarly are going through the experience of sight loss to know that there is life beyond what is happening to them.
https://www.rachelgadsden.com/
Every day I try to write pieces of poetry that help people and support people through the journey of low vision and blindness.
https://theblindpoet.net/about-dave-steele/
What I wanted from the Inner Vision Orchestra was for all the blind people to be able to play with professional musicians on the same level…to prove to all sighted people that we can be independent.
https://www.balujimusicfoundation.org/

The people inspiring our artists

Dave, Rachel and Baluji’s work is inspired by the experiences of Lucero from Mexico who lives with diabetic retinopathy and Thanakorn from Thailand, who lives with a form of age-related macular degeneration. The artists also met with Dr. Nancy M. Holekamp, Director of Retina Services at the Pepose Vision Institute in St. Louis, who shared the science behind retinal conditions, as well as her insights from treating people with visual impairment.

  

 Lucero, Mexico, living with diabetic retinopathy
Lucero, Mexico

Lucero is from Mexico and lives with diabetic retinopathy. Initially Lucero was misdiagnosed with cataracts in 2005 and then later received a diagnosis of diabetic retinopathy.

“It’s hard to understand how much sight means to us until we realise we could lose it. I remember in 2005, the first day I saw stains in my vision – smears of orange spread across my view, wherever I looked. It took me a whole month to seek medical help.”

Read Lucero’s letter to the artists here

Thanakorn, Thailand, living with a form of age-related macular degeneration
Thanakorn, Thailand

Thanakorn is 69 years of age and lives with age-related macular degeneration with a polypoidal choroidal vasculopathy complication, a common form of the retinal condition.

“When I first noticed my vision beginning to fail, I didn’t even tell my wife and daughters. I was very afraid of losing my sight completely; I didn’t want to share this burden with them. Now I accept that I am getting older, and I know that my condition is a result of ageing – it is a result of the long and happy life that I’m lucky enough to live.”

Read Thanakorn’s letter to the artists here

Nancy M. Holekamp, MD
Nancy M. Holekamp, MD

Dr. Nancy M. Holekamp is Director of Retina Services at the Pepose Vision Institute in St. Louis, Missouri, USA

“The practice of medicine is a very unique human interaction, and we are so lucky in the field of Ophthalmology that we can make a meaningful difference in the lives of people with low vision or visual impairment. We have made so much scientific progress in the treatment of retinal diseases in recent years, and I believe we can keep building on this momentum and continue advancing care for the millions of people impacted.”

Read Dr Holekamp's biography here

Visual Library

Commitment to driving positive change in ophthalmology

At Roche, we are committed to tackling the global challenges associated with vision loss alongside the ophthalmology community. Great advances have been made within the last decade in ophthalmology, but more needs to be done to promote the importance of good eye health, disease prevention, treatment, and rehabilitation for people with vision loss.

Change Makers is about showcasing the impact visual impairment has on people’s lives. Subsequently, we will be focusing on individuals who are driving ground-breaking progress in the field, working hard to make positive change. These are the people living with retinal diseases and their loved ones, scientists, ophthalmologists, patient advocacy leaders, regulators, and anyone else who is impacted by, or working to make positive change to the lives of people living with visual impairment. Join us as we celebrate the Change Makers and drive awareness for the need to do more in this area.

References

  1. The World Health Organization, Blindness and vision impairment, Factsheet, February 2021: https://www.who.int/news-room/fact-sheets/detail/blindness-and-visual-impairment (last accessed 26 August 2021)
  2. Cheloni R, Gandolfi SA, Signorelli C, et al. Global prevalence of diabetic retinopathy: protocol for a systematic review and meta-analysis. BMJ Open. 2019; 9:e022188. doi:10.1136/bmjopen-2018-022188.
  3. Wong WL, Su X, Li X et al. Global prevalence of age-related macular degeneration and disease burden projection for 2020 and 2040: a systematic review and meta-analysis. The Lancet Global Health. 2014; 2(2): e106-e116.
  4. The Lancet Global Health Commission on Global Eye Health: vision beyond 2020. Published online February 16, 2021 https://doi.org/10.1016/S2214-109X(20)30488-5 https://globaleyehealthcommission.org/app/uploads/2020/12/Commission-Report-1.pdf (last accessed 26 August 2021)

Tags: People, Science, Ophthalmology