There are at least a billion people with disabilities worldwide and this number is rising with ageing and population growth, making them the largest minority group globally. Among them, the number of people using assistive technology for mobility is estimated to double by 2050. In India alone, at least 20% of the disabled are confronted with limitation of mobility- the exact number of people who have access to and use wheel chairs successfully is difficult to estimate. On International Wheelchair Day (1 March), this article seeks to understand the current climate for wheelchair users in India, with a few recommendations in the context of health systems.
As one of the most successful mobility devices in history, the wheelchair has actually quite a remarkable history as well. The Chinese used it since 525 AD and so did the ancient Greeks who used wheeled beds to transport people who could not walk. The current-day model was developed by Herbert Everest and Harry Jennings. The latter was disabled and wanted a chair that could be folded and transported in a car. The motorized version of the electric wheelchair was the brain child of George Klein who developed a package of technologies (including the joystick, the turning systems and the wheel drives) for use by war veterans and disabled civilians in Canada after the Second World war.
Launched in 2008, International Wheelchair Day is a global day of events and activism when wheelchair users celebrate and share the positive impact of “the Chair” in their lives. These four wheelers allow for more opportunities to be independent, socialize, work and experience life. The success of mobility appliances depends on a complex maze of dynamics between the user, the mobility appliance, the environment, supportive services and the community. Along with the possibilities, expectations and opportunities, come challenges, some of which pose fundamental questions about personhood and diversity bio-ethics.
One of the most popular wheelchair users was of course Stephen Hawking, sometimes called the ‘genius in the wheelchair’. He often remarked, “The downside of my celebrity is that I cannot go anywhere in the world without being recognized. It is not enough for me to wear sunglasses and a wig. The wheelchair gives me away.” Among other popular users are Franklin D Roosevelt, Frida Kahlo, Christopher Reeves, Barbara Jordan, and so many more.
Although with the current commotion around Covid-19 it suddenly doesn’t look as sure anymore, Japan will normally soon host the 2020 Olympics and Paralympics. In late August, if all goes well. The official motto for the 2020 Olympics is ‘United by Emotion”, to hammer home the vital message of Diversity and Inclusion. The International Paralympic Committee (IPC)’s vision for making an inclusive world through Para sport is so strong that two awards will be given away, to one man and one woman respectively, for their exceptional contribution.
India expects to send at least 35 athletes to Tokyo, their largest ever delegation, and their hopes are pinned on archery, athletics, badminton and shooting. As Joey Reiman put it, aptly: “ The Olympics is where heroes are made. The Paralympics is where heroes come.” These are indeed inspirational people who achieved their goals and became an inspiration the world over for not allowing their immobility to keep them down.
The (ordinary) situation in India is vastly different, however. Many users are now voicing their struggles as they navigate public transport systems, colleges, hospitals and employment spaces.
In India, the Rights of Persons with Disabilities Act, 2016 mentions the provision of aids and appliances, medicine and diagnostic services and corrective surgery free of cost to persons with disabilities, particularly those from modest income families. As per the Act, service providers should make their premises accessible for their employees of all abilities.
The Accessible India Campaign was launched in 2015 by the Department of Empowerment of Persons with Disabilities (DEPwD) to provide universal accessibility and equal opportunity to participate in all aspects of life and live independently, with a focus on developing an accessible physical environment, transportation system and Information & communication ecosystem. While the impact of the campaign in big cities is increasingly obvious, in peripheral locations like ours it’s another story so far. A lot of the work around mobility devices is done by individual organisations who strive to build capacity and establish networks for the provision of wheelchair clinics and skill units to promote provision of local, tailor-made, sustainable chairs to users.
Worldwide, and particularly in India, people with disabilities report less access to health services, with costs, transportation, long waiting lists and attitudes of health professionals as the main barriers- this is worrying as the unmet healthcare needs escalate with time, and the costs to the community, the country and the world at large can become too much to manage and solve.
What can health systems, particularly in low and middle income countries do to accommodate persons with mobility limitations?
First, ignorance towards accessibility is discriminatory. An essential but often overlooked component is adequate knowledge and appropriate training for medical staff at all tiers, on accessibility, attitudes and knowledge about disabilities. This will go a long way in providing safe, appropriate and accessible health care services for persons with mobility disabilities. Positive thoughts and a great attitude go a long way.
Second, engaging and involving wheelchair users themselves in the dialogue would ensure their voice to be heard loud enough for effective action. If the people, who are navigating endless barriers on a daily basis, were included in boards, in meetings and in the planning itself, the success of programs and initiatives would no doubt greatly improve, since diversity and inclusion are known to add to productivity and success.
Third, incorporating Universal Design is key, both in planning physical premises of health facilities and in technology, to ensure that building and products usage is easier, safer and can be used by virtually everyone, regardless of their ability. What we need to plan from the beginning is the incorporation of multiple access points, ramps, elevators, spacious doors, elevators, signage conveying accessibility, parking spots close to entrances, etc.
Fourth, progressive legislation to remove barriers to wheelchair mobility is of utmost importance. Laws and policies must be persistent in their ask for removal of barriers to improve access to facilities for health, education, employment, and activities of daily living. Collaboration with key authorities in the local context would help to turn these laws and policies into reality and with the implementation of services to promote access and remove barriers.
Disability is quite simply the only minority group that one can join at any time in one’s life. So also from that point of view, for all of us, it’s in our best interests to start thinking about it, be accommodating and embrace people with varied abilities.
We are the change the world needs right now. We can absolutely have impact, every single day.
Where’s a Wheel, there’s a way!