By Aida Mokhtar
Yesterday we celebrated World Future’s Day, today, is the future of yesterday marking the International Day of Persons with Disabilities 2021 celebrated every 3rd day of December. The theme for this year’s celebration by the United Nations (UN) is “Leadership and participation of persons with disabilities toward an inclusive, accessible and sustainable post-COVID-19 world.”
The UN Secretary-General, Antonio Guterres, calls for everyone to meet the Sustainable Development Goals (SDGs) that focus on the notion of leaving nobody behind with COVID-19 uncovering the inequalities and barriers encountered by persons with disabilities (PwDs).
He mentioned, PwDs and their representative organisations are going by the call, “Nothing about us, without us”. And he puts forth the notion of obtaining guidance from PwDs for the disability-inclusive response and recovery phase allowing for the building of relationships, addressing injustice and discrimination in order to form a more inclusive and accessible post-COVID-19 world.
The popular ideals of an inclusive and accessible world remain the foci of PwDs in the post-COVID-19 phase.
We should continue our efforts in attaining these ideals for PwDs. Until when? It does appear to be a never-ending pursuit in our life as there is always something to improve on in terms of the law or facilities or the perception of typical people to PwDs amongst others.
There is no doubt the central role a parent plays in the life of a PwD during the COVID-19 pandemic. As a mother of a young man with autism, I opine that seeking for disability inclusion and accessibility to services during the COVID-19 pandemic rests a lot on the parent especially if the PwD were unable to seek inclusion and accessibility on their own accord.
Imagine the strength and motivation that must come from the parents who must primarily be able to adapt to the fluid transformations in society during the COVID-19 pandemic before he or she can ensure that the PwD under his or her care is alright. These are indeed ‘special parents’ who should be acknowledged on this auspicious day.
I am one of those ‘special parents.’ I tirelessly keep up to date with the latest information on the COVID-19 standard operating procedures, obtain information from the college and therapy centres on how classes and therapy sessions will be conducted and train our son to adapt to the changes upon elaboration and then by slowly giving him the independence to attend all sessions with reminders while seeking for advice from other family members and support groups such as the IIUM Special Parents Support Group for one.
The COVID-19 pandemic instilled fear and gave us a temporary pause in seeking Occupational and Speech Therapy sessions at a time when the cases were high. Later, our Speech Therapy sessions that were normally done physically, were conducted online. After a temporary break to Occupational Sessions which required physical attendance, we returned to them later after overcoming the fear of getting infected with COVID-19.
A social story was used to explain the situation better to our son with guidance from our speech therapist on the process of getting the vaccinations done. College lessons have since early 2020 been transferred online for several semesters needing the quick adaptation from our son who was in favour of routines. Fortunately, he embraced the new routines well. I am certainly grateful for this.
This is my story, upon reading on personal experiences of caregivers in several support groups, some are going through more challenges than others as they care for their children with disabilities who have to adapt to life during the pandemic.
There have been cases of children with disabilities who are not happy about being at home for longer periods of time than usual, and those who are facing problems in adjusting to online schooling and not seeing friends and teachers in school. Bedtimes have been reported to be disrupted and meltdowns have increased in some cases more than others.
It is disheartening to read and hear of some of these unfortunate experiences. The special parents who care for their children with disabilities are some of the heroes that have arisen during the COVID-19 pandemic as they not only have to care for themselves but also for the PwDs at the same time sometimes they care for their children more than themselves at times.
As we mark the International Day of Persons with Disabilities 2021, we salute the special parents who have tirelessly been making the lives of PwDs better amidst a pandemic that has brought about fear, uncertainty and anxiety in our life.
The sacrifices, resilience and determination of special parents make them exemplary members of society who deserve our utmost respect. They are indeed instrumental in not leaving anyone behind as suggested by the United Nations. ***
(Assoc. Prof. Dr. Aida Mokhtar is an academic in the Department of Communication, AHAS KIRKHS)