Our understanding of disability must expand to include people with invisible disabilitieshttps://indianexpress.com/article/opinion/our-understanding-of-disability-must-expand-to-include-people-with-invisible-disabilities-5476146/

Our understanding of disability must expand to include people with invisible disabilities

The criteria and process for identifying people and certifying people with disability must find processes to recognise the disability of people with fluctuating disability such as that experienced by many with severe mental illness.

World Disability Day
Many people with disabilities cannot be identified by a casual observer as they don’t have the identity ‘badges’ of a wheelchair, or a crutch, or a hearing aid. (Representational)

People with invisible disabilities continue to be excluded from participation and inclusion by the general public, the media and even the disability movement. Imagine two people waiting at a bus stop. The bus pulls up and someone jumps out with a small box to create an additional step. The woman using crutches uses the step, pulls herself up with the handrail, and is offered a seat in the bus. The bus pulls away. Left behind is the man with a paralysing anxiety disability which stops him from using any public transport. Both are people have disabilities, yet we naturally assume that the person with crutches is the only disabled one.

The United Nations Convention on the rights of persons with disability tells us that persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full participation in society on an equal basis with others. The Rights of persons with Disability Act of India, 2016, also clarifies that disability includes people with mental illness, epilepsy, intellectual impairment and other disabilities which are not evident to a casual observer.

People who cannot participate fully in society include those with problems such as renal failure, chronic back pain, epilepsy, mental illness and intellectual disability. They are a large proportion of the millions of Indian people who live with a disability. They are disabled as much by the structures that limit their ability to participate such as schooling that relies exclusively on literacy and thus limits learning opportunities for learning for young people with intellectual disability. Such as public attitudes where people shun and avoid conversation with a person with a psycho-social disability who may be dressed in an unusual way.

This year the United Nations has declared the theme for World Disability Day is “Empowering persons with disabilities and ensuring inclusiveness and equality”. Many people with disabilities cannot be identified by a casual observer as they don’t have the identity ‘badges’ of a wheelchair, or a crutch, or a hearing aid. People with epilepsy without access to medication cannot safely cross a road alone yet who will identify and help them? People with intellectual disability can get lost in a train station or city streets yet are not immediately recognised as disabled.

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Within the disability movement and disability networks in India and across the world, it is evident that there a hierarchy of disability. People with invisible and psycho-social disabilities are not equally included, represented or given equal voice or resources. Within India, disabled persons organisations are typically led and represented by men who use crutches and wheelchairs. Could it be that the call for inclusiveness, empowerment and equality this year is one that the disability movement could address within its ranks? How could disabled people’s organisations more actively include people with psycho-social disability or chronic pain? How could disability networks ensure they speak for the needs of people with invisible disabilities?

Inclusion and empowerment of people with visible and invisible disabilities must include policy action by the Ministry of Social Empowerment and Justice. The criteria and process for identifying people and certifying people with disability must find processes to recognise the disability of people with fluctuating disability such as that experienced by many with severe mental illness. It must also include active responses to include people with invisible disabilities from agencies working in Inclusive sports, inclusive sanitation and inclusive community-based development are the catch-cries of organisations working in disability. Yet how well does this ‘inclusive’ brand include the people with invisible disabilities? International Disability Day this year must actively represent people with epilepsy, mental illness and intellectual impairment and chronic pain.