The real meaning of disability
“WHAT is a meaning of disability?” I asked the participants in one of my Disability Equality Training workshops.
“Unable to take care of oneself because of paralysis,” one participant answered, “and require help in doing it”.
“We all have a disability one way or another,” another chimed in. The others nodded in agreement.
“What disability do you have?” I asked her.
She paused for a moment to collect her thoughts and listed a number of things she could not do.
Is not being able to perform certain tasks considered a disability?
The United Nations Convention on the Rights of Persons with Disabilities (CRPD) recognises that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others.
The term ‘persons with impairments’ is intentionally used in the CRPD to distinguish the difference between impairment and disability. Many people think both have the same meaning. There is a stark difference between the two.
Before unravelling the meaning of disability, it would be helpful to understand some of the terms associated with it. World Health Organisation states that impairment is a problem in body function or structure. When persons with impairments have difficulty in executing a task or action, they are said to have activity limitation.
Participation in society, or social participation, means an individual’s involvement and interaction with others in the community or society. This includes being part of the educational, leisure and recreational, religious and cultural practices where one can be included, join in, contribute and support meaningfully.
I related my experience to the participants as an example. I am paralysed on all four limbs from a swimming pool accident. My paralysis is an impairment. Because of my impairment, I can neither walk nor wear clothes by myself, among others. When I cannot perform those tasks, I am said to have activity limitation. These limitations can be compensated in some ways by using a wheelchair and having someone assisting me.
Even then, I still faced problems going to school. There was no suitable transport to take me to school conveniently. There were steps to the classroom. These barriers in the transport and built environment, and in other instances, discrimination and prejudice, prevented me from participating fully and effectively in society. This was where I experienced participation restriction.
In this context, the term ‘persons with disabilities’ refers to individuals who experience participation restriction rather than denoting impairments or activity limitation.
The other prevalent thought is that impairment causes disability. I could not walk, therefore I could not climb up the three steps into the classroom and consequently I could not go to school to get an education. To solve the problem I faced, I must be cured. I must be made to walk again.
Treatments and rehabilitation do not always lead to a cure or full recovery for persons with impairments. I have been using a wheelchair for the past 33 years. I have gone through surgeries, treatments and physiotherapy. I have achieved the limit of my physical functional performance. Further treatments and therapies cannot make me walk.
An estimated one billion people in the world live with some form of disability. Imagine the cost, resources and time needed to cure that many people. Is it even possible to do that when the impairments are permanent in most cases?
Going by the definition of the CRPD, disability is participation restriction caused by attitudinal and environmental barriers. These barriers are mostly manmade or caused by the unequal treatment of persons with impairments. We could design and construct better buildings without all those obstacles.
We should give everyone equal opportunities instead of pigeonholing people in those who can and those who cannot. It is better to remove barriers and provide reasonable accommodation in facilities and support services to ensure social participation rather than trying to cure the impairment and normalise the person.
I related how I could move about freely and conveniently when I was in Tokyo. The built environment and public transport there were mostly barrier free. Back in Kuala Lumpur, I even have difficulty getting out from my house safely and conveniently due to the lack of accessible pedestrian walkways. This is proof that how we construct society can make or break the social participation of persons with impairments.
The participants of my workshop misconstrued their lack of skills in certain tasks as a disability. Not being able to cook because one doesn’t know how doesn’t qualify as a disability. Likewise, not knowing how to use a computer doesn’t mean one has a disability. Lack of skills and knowledge is not a disability. Those are not permanent impairments that affect social participation. They could learn to cook or take computer literacy classes to improve their skills.
Understanding the difference between impairment and disability, and the barriers to social participation is crucial. When we are able to identify the real location that causes the difficulties faced by persons with impairments in society, we can then work towards removing those barriers.
The participants eventually grasped the real meaning of disability. The look in their enlightened faces was reward enough for me. They realised that to make society inclusive, the objective is not to cure impairments but to remove societal barriers so that everyone can participate in society equally, fully and effectively.