This is The Guardian.

The Guardian Archive Long Read.

Hi, my name is Jan Gruhe.

I am the author of The High Cost of Living in the Disabling World, published in 2021.

The story is really about the fact that since the turn of the millennium, disability rights have become law in countries around the world, but we are

nowhere near real equality for disabled people, either politically, socially or economically.

Living with disability means doing invisible work, which is unpaid and unrecognized labor to compensate

for how the world is built and how society operates.

What grew me to the story is really the immense gap between ideals and realities when it

comes to living with disability.

Over the years, I've heard a lot of grand rhetoric about inclusion and human rights, equal

participation, perhaps particularly in connection with

the United Nations Convention on the Rights of Persons with Disabilities, introduced as far back

as 2007. There was a sense in some of these political statements that the exclusion and

marginalization of disabled people was about to be solved.

And of course, there are very many more examples of successful disabled people than there used to be.

It's the sort of thing you see in culture, in sports, in corporate recruitment ads.

Disability is just another form of diversity, which we've now taken into account.

But I've also thought about what it means to be,

quote unquote, included as a disabled person. I'm a wheelchair user who works full-time and has a family.

This has taken a lot of effort and a lot of luck. Having the resources to navigate everyday life

isn't a given, because it means negotiating

...