Burden

The real burden of disability

By DLI CEO Christina Ryan

Disability is prominent in headlines and news feeds once again. Conversations are broad ranging from NDIS to workforce, from the ever present “inclusion” to perennials like access and public transport. And then there’s the seemingly endless demands of more and more consultations.

A word that frequently appears in the public domain when discussing disability is burden. The “burden” of disability. As if it is a burden on others to be around disabled people, to employ us, include us, consider us as part of the community. To spend a portion of the tax pie on disability services and supports. As if it is a burden to have us in the room as equals.

The real burden, however, is experienced by disabled people. It is a burden to operate in a world that is far from built for us and where disabled people are often an afterthought. Where systems and processes forget that not everyone is generic.

Where the public discourse descends into the dangerous domain of vilification. When nobody seems to notice that all the words they use to demean each other, all the words of hatred and insult are words about being disabled.

The real burden is:

Turning up for your new job as an accountant and being expected to work extra voluntary hours supporting your employer to build a more accessible workplace.
Spending valuable time every day contacting your local government to fix access around building sites and infrastructure projects.
Being expected to write an endless stream of letters making formal complaints about processes that prevent you from participating in work and community.
Getting your body corporate to understand that you have a right to use the facilities where you live, just like all your neighbours.
Being told that making an event accessible costs too much.
Raising a concern about access and then being left off the invitation list because you are a troublemaker.
Not going to office drinks because someone forgot that you are also part of the team and the venue isn’t accessible for you.
Being treated like a 12 year old when you are one of the oldest people in the room.
Not being able to get on the bus because the wheelchair bays are full of luggage or prams.
Giving up a much loved job because they rearranged the office without consulting you and you are no longer close enough to the toilet.
Having to pay twice for everything because you need support.
Having policy and decisions made about disability without any disabled people being in the room.
Finally getting into the room only to be told that you are taking up too much space.

Amongst others.

Disability can be an endless stream of “extras” – a constant presence of being overlooked, forgotten, sidelined, underestimated. Of being done “for” not “with.”

The real burden of disability is that nobody is doing this deliberately. The burden is having to respond to very nice, well meaning people who simply forget that their world doesn’t work for you. That their decision making processes don’t factor you in. Of living in a constant loop of retrofitting and fixing.

The real burden is continually being polite about being forgotten.

This article draws on conversations with disability leaders, and DLI members, over the last decade. Thank you to all of them for their perspectives.

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Christina Ryan is the CEO of the Disability Leadership Institute, which provides professional development and support for disability leaders. She identifies as a disabled person.