DECEMBER 2021 ISSUE
A different Way of Life DECEMBER 3: INTERNATIONAL DAY OF PEOPLE WITH DISABILITIES
INTRODUCTION Disabilities are impairment of body or mind that make it more difficult for the person to do certain activities and interact with its environment. According to WHO studies, more than 1 billion people experience disability, and this figure is predicted to rise, due in part to population aging and an increase in the prevalence of non-communicable diseases. Despite this, few countries have adequate mechanisms in place to respond fully to the health priorities and requirements of people with disabilities. It is not the disability that defines you, rather it being your way of dealing with the challenges you face with this disability. The International day of persons with disability is an international awareness day, celebrated yearly in the third of December. This event was promoted by the United Nations since 1992. It aims to spread awareness and knowledge of the actual meaning of disability, ensuring support of the people concerned while making sure that their rights and well-being are guaranteed. Originally, this day was known as the International Day of Disabled People. Then it was changed to be known as International Day of People with Disability in 2007. WHO, alongside the UN, takes part in monitoring this day, highlighting the need of insuring the rights of people with disability who consequently become eligible to participate in their society equally and effectively. Every year, WHO decides on a theme and spreads the word by developing flyers, posters, presentations and so on, that are further shared around the world in the WHO regional and country office. This year, the chosen theme is "Fighting for rights in the post-COVID era”. It is selected in order to inform everyone that patients living with disabilities are among the most affected by the COVID-19 pandemic.
“It’s the repetition of affirmations that leads to belief. And once that belief becomes a deep conviction, things begin to happen.” MUHAMMAD ALI
AUGUST 2020 | ISSUE NO. 4
Pharmacists play an important role in the life of people with disabilities since they come in contact with them and thrive to optimize their medications. The following acronym summarizes the qualities and characteristics of pharmacists:
“DISABILITY”
Dedicated to respect and help people with disability. Imaginative, to spread awareness about disability in a catchy and creative way. Supportive, to provide equitable care for people with disability. Affectionate, treat people with disabilities with love and empathy. Benevolent attitude and smile while talking to them, to show willingness in answering all their concerns. Influential, to convince others that disability is different than inability. Limitless in assisting, boosting and supporting people with disability. Innovative, to find new ways in providing appropriate counseling to optimize their medical Regimen. Treasuring people with disabilities, greeting them with a smile and offering them all the Help they need. Youthful spirit that allows these people to feel welcomed and understood.
In the following newsletter, we’ll be tackling the treatments of some disabilities, giving examples about healthcare professionals living with a disability, and finally talking about the inclusion of a disability in the humanitarian action.
DISABILITY INCLUSION IN HUMANITARIAN ACTION Unintentionally left behind Persons with disabilities make up 15% of the global population - Over 1 billion people experience disability - More than 32 million children with disabilities worldwide deprived of an education According to humanitarian contexts, individuals with disabilities encounter barriers related to humanitarian actions related directly to their disability, as well as other environmental, institutional, and social encounters (such as discrimination). This puts these individuals at a disadvantage when it comes to exclusion and marginalization in humanitarian assistance. This has led to the various changes in policies in World Humanitarian Summit (2016), UN Disability Strategy (2019), and further development of the guidelines such as the IASC (Inter-Agency Standing Committee).
Disability
Barrier
Exclusion marginalization
Humanity & Inclusion Humanity & Inclusion (HI) is a recognized leader for its role in the inclusion of people with disabilities, as well as advocating for taking into account the intersection of age and gender with disability rights.
HI's approach to IHA in the humanitarian landscape aims to address four key areas:
MEAL: Monitoring-Evaluation-Accountibility-Learning
WHO IS WITHHOLDING ACTION IMPLEMENTATION? Based on latest guidelines from HI’s work on Inclusive Humanitarian Action, several ‘gaps’ and challenges were found to be the major contributors to the lack of disability inclusive. These findings were based on global consultation to collect best practices on disability inclusion, and recent learnings of humanitarian planning process. I. Turning guidelines and standards into practice: Although guidelines have been developed, there is a shortage of implementation mainly due to the lack expertise to turn these guidelines to actual practices. II. Humanitarian coordination and programming are not inclusive of persons with disabilities: Persons with disabilities are still not perceived as part of the general population. III. Lack of systematic data collection and analysis on disability at coordination and program levels. IV. Limited participation of persons with disabilities: resulting in a very limited understanding of the needs and priorities of these individuals. V. Limited financial and technical resources to identify and remove barriers.
WHAT DOES DISABILITY INCLUSION LOOK LIKE? Inclusion can come in many informs, all of which are essentials for people with disabilities. They are the means by which someone can overcome their disability and lead a ‘normal’, healthy, and productive life. The range of inclusion could come in the form of small infrastructural changes, such as installing wheelchair ramps, bathroom handlebars, and parking areas designated for them. Alternatively, the implementation of nationwide systematic changes has improved the Morales of these individuals, for example hotlines for the disabled, competitions that they can participate in, and even Olympic representation.
HEALTHCARE PROFESSIONAL WITH DISABILITY Dr. Jamil Zogheib is a pediatrician, author, founder of the Lebanese ALS Association (2015), and genuinely sanguine lover of life. He was also a fighter, who despite being hit by amyotrophic lateral sclerosis (ALS) in 2008, a rare neurodegenerative disorder that makes him unable to move any muscles except his eyes, wrote books using a special device that allowed him to communicate with his eyes. When she first interviewed him for her show in Lebanon, the clip went viral as thousands across Lebanon were touched by his story. Instead of allowing himself to surrender to paralysis, Zogheib, who has three children, used a special device to communicate with his eyes, enabling him to write a total of 10 books. His first book, “Ma Vie, Mon Histoire” (“My Life, My Story”), tells the tale of his disease. His second was named “Le Medecin des Ames Perdues” (“The Doctor of Lost Souls”). In his books, he offers a message of hope, while struggling against the illness. Boustany was so moved that she made a documentary about him, entitled “Jamil, A Flying Soul.”
TV host Karen Boustany’s interview with Dr. Jamil Zogheib “I used to go to visit him all the time,” she recalled. “I took my family, and we became friends, but every time I would come, we would plan projects. We were both the brain, but I was the physical energy, because he couldn’t do it. He was truly the wind beneath my wings.” She felt she had become his messenger in spreading awareness about the disease and its treatment. “He "Even when he was very sick, he was changed my life,” she said. “He even knew his 10th caring and thinking about others. He book would be his last, as he named it ‘La Derniere was amazing. It is rare to come Page’ (‘The Final Page’). He was in love with life, and across such people." he didn’t want to die, always hoping to find a cure.”
INDIVIDUALS WITH DISABILITIES Steven Hawking World Renowned Astrophysicist Steven Hawking’s was diagnosed with ALS or Lou Gehrig’s disease at the Age of 21, and was told by his doctors that he would not live past his early 20’s. Beating all odds, he lived for 55 more years than expected Professor Hawking lived as an inspiration for many people, and especially those with disabilities.
Matthew Stutzman Being born without hands didn't stop Matt from achieving the Silver Medal in the 2012 London Paralympics.
Minda Cox
Minda was born in India without any limbs, and later adopted by her family in the U.S.
Minda decided to pursue Art as it was already a hobby of hers.
“Art has the ability to speak when I can’t put words down. When words fail me, it can be a way to express myself," said artist Minda Cox
AGONIST COFFEE SHOP IN ZALKA, LEBANON Founded by Wissam el-Hage, a trained physiotherapist, the Agonist café in Zalka hires people with Trisomy 21.
There is no cure for Down syndrome, but treatment is available to help your child. Your child may need physical, occupational, and speech therapy to help with their development. Many children are helped with early intervention and special education.
MOTIVATIONAL QUOTES
“My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit as well as physically.”
Stephen Hawking
“I do not have a disability, I have a gift! Others may see it as a disability, but I see it as a challenge. This challenge is a gift because I have to become stronger to get around it, and smarter to figure out how to use it; others should be so lucky.”
Shane E. Bryan