In 2020, the world stopped for a pandemic. People stayed home — and in many cases continue to — and changed their habits, routines, and ways of life. Some decided to take time off to do things they always wanted to do, while others have continued to work or study using digital technology options that seem to make the world small and connected. Despite all that everyone has done, in many ways people across the globe have been bound, limited, and coerced to follow precautions. Their lives have been derailed.
For people with disabilities around the world, the situation is more dramatic — often life-threatening. Associated conditions, limitations, and disconnections from support and services have made them more vulnerable to the effects of the coronavirus. They have been stuck at home, dependent on family members, neighbors, and often strangers for their day-to-day needs.
Some of them have been separated from their caregivers and had to make do with alternate arrangements with family members taking over the role. Some have had to go to the hospital for ongoing medical treatment, despite lockdowns, few transport options available, and facility-based limitations. In many countries, in the absence of strong state support and welfare, they have also had to find ways to make ends meet. Fear and uncertainty have prevailed in many people’s lives.
The future seems even more frightening, and for people with disabilities, the new normal may be rife with more challenges and missed opportunities.
According to the World Health Organization, there are more than 1 billion people living with some kind of disability around the world. They account for 15% of the world’s population and represent the largest minority group. Among them, 110 million to 190 million adults experience significant difficulties in functioning, and 93 million children live with disabilities that are moderate to severe.
This is a population that will increase with each day. As populations age, chronic conditions become more prevalent and long-lasting, and injuries and accidents steadily rise. It is also a population that any of us can join at any point in time in our lives. So it is in our best interests to address barriers and create a world that works best for everyone.
We suggest three areas where changes could positively impact people with disabilities:
1. Policy change or improvement
Policies cannot be made in passing, as an afterthought, or in isolation; they have to be deliberate, clear, and strong to be accepted, passed, and implemented.
For example, disability pensions — which are given to those who are permanently or temporarily unable to work due to disability — could be improved in many countries in terms of the amount, the relaxation of eligibility requirements, and the ease of applying. This could go a long way in promoting access and utilization of services and facilities. A recent move toward some of these has been announced in India, but the actual reality remains to be seen and only time will tell.
Additionally, special health insurance for people with disabilities should not only provide for routine treatments but intensive treatments specific to each individual. Both on paper and in practice, it should be affordable, cover all disabilities, and be independent of employment status.
Disability-friendly health care facilities should also be a priority; it is essential to make them more accessible, accommodating, and adaptable. This should go hand in hand with preventive, protective, and promotive services, as well as trained, skilled personnel with an inclusive mindset. These structural changes could all help to improve the health, well-being, and quality of life for people with disabilities.
An emergency help line should also be free, functional, and accessible, such as the one in Australia. National and local help lines with appropriate support networks should be helpful with inquiries, service requests, support changes, complaints, and assistance. Public sector websites, public information broadcasts, and information portals should be disability-inclusive and accessible, by choice and with deliberation.
For people with disabilities, the new normal may be rife with more challenges and missed opportunities.—
2. Embracing and encouraging improved practices
While policies are crucial, it's the practices that make or break them, particularly in disability. To the maximum extent possible and appropriate, virtual technology should be inclusive and accessible. That way, children and adults — particularly women, who may be the primary caregivers at home — living with disabilities can function and operate in their education, work, and social spaces.
Efforts to make sure online classes and sessions incorporate captions, speech, and language translation, with the option for access at later points in time, should be prioritized. Most people with disabilities have lost connection with their caregivers and support people, including therapists and educators. Priority access to such essential workforces is a must for future pandemics so the vulnerable are protected and taken care of.
As people with disabilities bear the brunt of the lack of services, information, and access, mental health has also been affected significantly. Therefore, support for emotional well-being for these groups and their families should become a priority need. Also, the government — and not just NGOs — should make an effort to provide opportunities for employment.
3. A shift in perceptions
Despite firm policies and good practices, efforts will be in vain if perceptions and perspectives are not aligned. Disability awareness cannot be fragmented and need-based; it must be universal, optimal, and holistic. It is not optional or a choice, but a commitment.
Awareness and education are key to successful inclusion in health care, education, employment, the social sphere, and other parts of life. Sensitization facilitates and promotes acceptance, enabling the creation and sustainment of strong, cohesive communities that choose diversity, inclusion, and consensus in a commitment to accepting differences.
If the pandemic has pushed everyone back, it has pushed people with disabilities — who were already at the margins — beyond. It has taught us many lessons and opened up opportunities, and it’s in our best interests to learn from the small adaptations and inclusive practices that became necessary in one of the worst health crises the world has seen in recent times.
If not now, when? If not for us, for whom?
Let's change the story and make 2021 more disability-inclusive.