‘Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. Impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement of life situations’
-World Health Organization (2018)
December 3 is ‘International Day of Persons with Disabilities’ or ‘World Disability Day’, but not many people have any knowledge about it.
As ironic as it may seem that the general public is ill-informed about such a day set to create awareness, it is reflective of a society which ignores to a large extent, the realities of people living with disabilities.
From omission of ramps from the construction plan of some buildings to social media trends where videos of users hiding the wheelchairs, prosthesis or vital equipment needed by their partners, friends or family for clout, it is apparent that PLWD experience poor treatment and violence on account of their disability.
According to the UN’s Department of Economic and Social Affairs, an estimated 1 billion people around the world live with a disability, making them the world’s largest minority. 80% of these individuals live in developing countries.
Though recognized as vulnerable group, women and children with disabilities are most endangered as they are more likely to be victims of physical abuse and sexual assault. Mortality for children with disabilities may be as high as 80 % in countries where Under-five mortality has decreased below 20% (United Kingdom’s Department for International Development and only 45 countries in the world have anti-discrimination and other disability-specific laws. Also, according to UNICEF, 30% of street youths have some kind of disability.
Data from UNESCO states that 90% of children with disabilities in developing countries do not attend school while a UNDP study revealed the global literacy rate for adults with disabilities to be as low as 3% (and 1% for women)
As they grow, people with disabilities face a virtually insurmountable challenge, entering the job market. The International Labour Organization estimates that up to 80% of PLWD in some countries are unemployed. Various factors are responsible; chief among them is the attitude of employers.
Studies in the USA in 2003 and 2004 by Rutgers University revealed that two-thirds of unemployed respondents (PLWD) wished to work but were unable to find work. 1/3 of employers surveyed said that persons with disabilities could not effectively perform the required job tasks hence could not be offered employment. However, thousands have been successful as small business owners and the group has a higher rate of self-employment than people without disabilities.
WHAT HAS THIS GOT TO DO WITH THE RARE DISEASES CAUSE?
Most people living with a rare disease have a disability. Due to the genetic nature and chronic course of majority of rare diseases, disability may occur in childhood, progress in severity and reduce life expectancy. Most rare disorders are chronic illnesses and lead to either structural or functional disabilities or both. In fact, most genetic and rare disorders have been known to account for invisible disabilities as well.
This significantly affects activities of daily living with respect to time of completion and effectiveness, going on to impact other areas of their lives such as schooling, employment, family and relationships.
The complexity of rare diseases also reflects in how the symptoms can change from time to time or fluctuate, with the individual expressing them at one time and other times they seem to have abated.
According to Eurordis, economic burden, absenteeism from work and hampered professional activity, result in 70% of people living with rare diseases (and their caregivers) stopping work or reducing professional activity due to disease , while 69% faced a decrease in their income.
One is unlikely to be wrong in assuming that the reality faced by People living with rare diseases and having a disability is much worse. Hence the importance of speaking up on their behalf at every chance possible as well as amplifying their voices as they seek changes or reforms that address their concerns.
This year, Ghana is set to mark International Day of Persons with Disabilities with a Disability Inclusion Summit, the first edition of such, with the theme: ‘Building standards for disability inclusion and sustainable post-COVID 19 Ghana’. Being organized by the Ministry of Gender and Social Protection, the president of the country, His Excellency, Nana Addo Akuffo-Addo is expected to be in attendance as the guest of honor.
One may dare to hope that with this step, advocacy for persons with disabilities is being spearheaded by people in the upper echelons of government hence we can look forward to improved welfare, better programs focused on PWD, and by extension, individuals with rare diseases.
1. Factsheet on Persons with Disabilities (Department of Economic and Social Affairs, United Nations).
2. Juggling care and daily life: The balancing act of the rare disease community. A publication by Rare Diseases Europe (EURORDIS), May 2017.