Written by: Lauren Anders Brown, Executive Contributor
Executive Contributors at Brainz Magazine are handpicked and invited to contribute because of their knowledge and valuable insight within their area of expertise.
The International Day of Persons with Disabilities is observed annually on December 3rd. This globally recognised day aims to promote the rights, well-being, and inclusion of individuals with disabilities in all aspects of society. It serves as a platform to raise awareness, advocate for greater accessibility, and celebrate the diverse contributions of people with disabilities.
Just over a year ago, I was at the United Nations Secretariat building in New York honouring this day with the opening of my exhibit ‘WANTED: A World for One Billion.’
Presented in a multisensory format, the exhibit featured photographs with image descriptions, videos showing written quotes by contributors, and videos with a first-person perspective of someone in a wheelchair or someone with a hearing impairment.
This exhibit is how art should be- accessible to everyone. All it takes is considering the varying abilities of the audience. It may have been the first of its kind exhibit to be so comprehensive with its formatting. I created it to set a standard.
It was important to me to create something that even persons with impaired senses could enjoy and experience in-depth, but that one exhibit or the other iterations of it in Norway, Finland, and Spain were not able to include all of the contributors' words in a way that was accessible to all. So in order to preserve the commitment made to each of the contributors, for the last year I have been working on a written and audio book of the exhibit.
Below is a preview of the introduction to the book, which is due to be completed in early 2024. –
I arrived at the hospital, a different entrance than the one he would go in for work every day. My friend Katy worked at the hospital as well, we had just had dinner the night before and she was there waiting for me when I arrived. She handed me his ring for safekeeping. We only had our ceremony just over two months prior and our vows were already being called upon, in sickness and in health.
In the emergency department, his wounds were being stitched up and I was pulled aside. He had suffered a contrecoup concussion. The impact from his fall was so forceful it caused his brain to hit the back of the inside of his skull. He had a traumatic brain injury that affected his right field of vision, it was gone and there was hesitancy to say if it would ever return. All I remember is feeling relief there was no other internal damage, and that I should be sat on the left side of his bed.
That began what would be a lifetime of being beside his left side as he adapted to having hemianopia. The doctors said while his right field of vision would not return he would adapt, and so would I.
Fourteen months later, I began an expedition to capture content that would be later curated into an exhibition with contributors from Morocco, Ecuador, and Mozambique. Each contributor I met with identifies as having some form of physical, sensory, or intellectual impairment. I spent time interviewing, photographing, filming, and capturing other media forms like 360 video with each to better understand their experience. I allowed each to have their autonomy in how their interview was conducted and where their portrait photographs were taken because I appreciated this was not an opportunity that was always afforded them. It was important to me that the way in which I collected the content reflected the issues at stake, and this included bodily autonomy.
Dr. Natalia Kanem, Executive Director of UNFPA made a speech at the Current Status of Women Conference in 2022 that best defines bodily autonomy.
Bodily autonomy means my body is for me; my body is my own. It’s about power, and it’s about agency. It’s about choice, and it’s about dignity.
Bodily autonomy is the foundation for gender equality, and above all, it’s a fundamental right. For UNFPA, bodily autonomy is mission-critical.
We know that when women and girls have the information, the services and the means to make decisions about their own bodies and lives – free from violence, discrimination or coercion – they can chart their own destiny and realize their full potential.
And when they do, the benefits – to their health, education, income and safety – extend to their communities, countries and beyond.
Societies flourish when women and girls are empowered to exercise their bodily autonomy. Yet, many are still denied this basic right.
This book is a testament to the true bodily autonomy of each of the contributors and to the world’s largest minority group which they represent - one billion people. That one billion includes people in terms of bodily impairments of physical, sensory, and intellectual ability; at the level of the person in terms of activity limitations; and at the level of society in terms of participation restrictions. Disability is not inevitable for persons with bodily or activity limitations, the disability comes from the way the rest of the world interacts with them.
The way buses will pass a wheelchair user by; the counters that are at eye level and unusable to those with less height; the ignored crosswalks by vehicles that assume pedestrians should see them; the glaring cracks in the sidewalks; and the reluctance and resentment to repeat a sentence.
Didn’t you hear me?
Do I have to repeat myself?
Immediately followed with a bitterly repeated sentence that makes you wish you had never asked at all and acted as if you had heard it all. I have seen some very talkative people become silenced in this way. Disability comes from people’s inability to participate in society equally to the other 85% of the world population without impairments or limitations and prejudice in what they can and cannot do. Fifteen percent of the world is forced to adapt, and the rest can learn a lot from their experiences.
Many countries have inadequate national enabling environments for respecting, protecting, and fulfilling the rights of persons with disabilities, especially their rights to sexual and reproductive health. As part of my artistic process, I completed a course through the London School of Hygiene and Tropical Medicine on Global Health and Disability where I was introduced to Lorraine Wapling who focuses on inclusive education. Her twenty years of research working in low-income countries showed both men and women face challenges concerning reproductive health. As she expressed during the course, it is the women who are at particular risk.
Some of the myths I’ve encountered include that disabled people have no sexual desires, that disabled women cannot get pregnant, that disabled people shouldn’t have children because they’d pass on their disability to their offspring, including those who’ve become disabled as a result of an accident or trauma, or that they wouldn’t be able to look after their children properly. In some cases, disabled women are being systematically denied opportunities to make decisions about their own sexual health. Women with intellectual disabilities and mental health conditions in particular are still at high risk of being made to undergo sterilisation, abortions, or be put onto contraception without their knowledge or consent.
I’ve encountered stories from disabled girls and women who’ve experienced prejudice and discrimination from healthcare workers who were not well informed or trained on how to accommodate their specific needs. They have experienced not being fully aware of what to expect during pregnancy and childbirth because meetings with their midwives didn’t include sign language support, or feeling ashamed at having to rely on relatives to relay sensitive or personal information. In some cases, having support with communication is specifically denied because of the need to maintain patient confidentiality.
Across the world, the people I met are actively working to change the myths and misconceptions and be an activist not only for themselves but for others. My first interview was in Morocco where I met Hayat whose name means life. She took me to the weight training room
where she spent many hours lifting for her Olympic training. She is strong, and shared she enjoys using her strength to help others so they can say afterward, “A champion helped me today.”
Ahmed uses his words and writing to create better policies. Haj trains the next generation of wheelchair tennis players, so others can go to the Olympics like him. In Ecuador, Andrea adores the time she spends with her cub scouts. Alex creates social experiments to put others in his shoes and increase awareness and empathy. Anita works to protect against violence against Deaf women in her spare time. Irene is an athletic sprinter and an advocate for women's sexual and reproductive rights. These are just some of the inspirational people I met who are working to get themselves included in society to change the misconceptions, negative attitudes, and discriminatory laws, and increase access to services. They want change and they want to be a part of it, they need to be because time isn’t running out, it’s actually running on.
Globally there is a growing trend in health that people are living longer lives. With the collective effort of improved healthcare, hygiene, and social programmes a person can expect to live much longer than generations before. The United Nations Population Division projects that life expectancy at birth for the world will be over 77 years in 2050–an increase of about 31 years over a century. Five-year-olds today are likely to become centurions.
Nearly half of the people who live past the age of 60 will experience a wide range of health conditions that impact function and quality of life. For example, 30% of the population over 60 in the UK will develop dementia before they die, and this proportion is likely to grow.
At the time of writing this, I am 38, which leaves 22 years until I am of an age where my function and quality of life may change. I don’t plan on waiting 22 years to begin speaking up and more importantly, listening for ways to make society truly inclusive for the longer lives we will all hopefully live.
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The book will contain all of the transcribed interviews and the photographs taken, alongside chapters bringing readers on the journey of what went into capturing and creating such a comprehensive exhibit. With the help of AI it will be translated into the languages spoken by each of the contributors: Arabic, French, Portuguese, Spanish with multiple accessible options along with an audiobook in English.
To learn more about when the book is published, please visit my website where you can also view a digital version of the exhibit at the United Nations.
Lauren Anders Brown, Executive Contributor Brainz Magazine
Lauren Anders Brown is an award-winning documentary storyteller who uses film, photography, audio, and her writing to focus on issues of global health and human rights. She has captured content in over forty countries, including conflict zones, in order to amplify the voices of others and especially women. She produces work through her own production company colLABorate: ideas and images, works as a consultant for the United Nations, and is Creative Director of the e-learning startup Gamoteca. She is a true artivist: an artist who uses any and all of her available platforms to creatively advocate for human rights.
