Recently I finished reading Disability Visibility – edited by Alice Wong. I’m still processing my feelings and thoughts about it. It’s a collection of essays by a diverse selection of disabled people. It’s also US-based, so some things (laws, society) differ from The Netherlands where I am based.

For those who don’t know, I myself am invisibly disabled. I am late deaf and chronically ill. I was born with a rare genetic defect. Fechtner Syndrome. Which causes macrothrombocytopenia, hearing loss and kidney failure. Since I was a kid I had blood platelet issues and a hearing disability. But when I was 24 – 25 years old it all came to head with kidney failure, losing the rest of my hearing and other complications.

The tiny disabled person who could

Today I’m living with a transplant kidney, completely deaf and dealing with all the complications that come with having a rare genetic defect. My deafness and chronic illness have a big impact on my life. It affects my daily energy levels and the social isolation of being late-deaf.

Before becoming ill I had high academic expectations for myself. Which of course I couldn’t meet once I was on dialysis pre-transplant and recovering from other health issues. Back then when I attended college in the early 2000s there was no help, nothing at the university for my hearing disability. I had to do a lot of self-study due to not being able to follow lectures and classes well.

Disability is not a brave struggle or “courage in the face of adversity”. Disability is an art. It’s an ingenious way to live.

– Neil Marcus

I always carried some internalized sense of failure for not meeting my goals and expectations. It took a born Deaf person pointing things out to me to make me realise the kind of feat I did to be where I am today while getting no adapted education my whole school career for my hearing disability or later my deafness. I did it all on my own.

Some of the essays gave me confirmation that I haven’t failed by not reaching the academic expectations I had before becoming ill and late-deaf. I liked that the essays were far from the usual inspiration porn you see related to disabilities. We disabled people need to work harder than abled people to reach things we want, be it a job, writing a book, getting a degree or learning a new skill.

It’s also harder for us to succeed in an abled world if abled people don’t create adapted spaces for us to participate and work how we work best.

For disabled people to thrive, we need webs of help, support, understanding and care. But in an able-bodied [literary] world, we are all expected to succeed on our own, never to need assistance.

‘Why My Novel Is Dedicated to My Disabled Friend Maddy’ – A.H. Reaume

The book

Disability Visibility starts right away with a heavy-hitting essay; ‘Unspeakable Conversations’ by Harriet McBride Johnson.

Harriet McBride Johnson was an American author, attorney, and disability rights activist. In her essay, she recounts when she was a guest of Professor Peter Singer, an Australian moral philosopher, at Princeton University. As Harriet McBride Johnson said: “The man who wants me dead.” She had two speaking engagements at Princeton to discuss infanticide with a group of undergraduates. It’s a hard essay to read if you are disabled.

The essays are not here to make people feel good. Some of them were very far from my own world, it taught me a lot about others. It exposes the hardship and current state of disability rights. And to think that disability rights in the US are farther along in several areas compared to The Netherlands. But it also shows how disabled people thrive and succeed in their lives.

In The Netherlands as far as I know, you can’t sue schools, the government or companies for being inaccessible. The government ratified the United Nations Convention on ‘the Rights of Persons with Disabilities’ as recently as 2016. Most people in the Netherlands aren’t even aware that disabled people have the right to equal participation.

If you are interested in accessibility or as a disabled person looking for other disabled experiences, I recommend this book. If only to become aware of the lives of a diverse variety of disabled people. Some essays are very US-centric, but there is still a lot to take away from this book.

I also like that this book is not inspiration porn and is devoid of toxic positivity. It even shows some anger which I think is valid. Disabled people don’t owe anybody joy and positivity when they aren’t feeling it. However again, every disabled person has their own lived experience and feelings.

Hopefully, someday there will be a similar book for Dutch audiences about disability justice and living with a disability in The Netherlands.