No ifs, no buts, no maybes

Dear Debriefers,

This edition opens the Debrief mailbag and explores results from the recent reader survey.

As well as hearing what readers are involved in, I finally solve the issue of what language to use about disability. Just kidding - I don't solve anything. But I do share a critique of the words I use and explain why I believe a diverse community needs diverse language.

But first we start with sad news from New Zealand that has sent tremors around the disability movement. The extraordinary advocate Sir Robert Martin passed away last week.

Disability Debrief is supported on a pay-as-you can basis. Thanks to Gordon for a new contribution.

“No ifs, no buts, no maybes”

Many readers are mourning the passing of Sir Robert Martin. His campaigning and personal story shaped the disability movement and the life chances of disabled people all over the world.

Martin was born in New Zealand in 1957. Complications at his birth led to brain injury and he grew up as a person with learning disability. He was separated from his family at eighteen months old and spent much of his childhood in institutions. As he later shared in a moving statement about his life and advocacy:

“I was put in an institution and I lost my family. I was locked away from the community. I wanted to be with my family. I wanted to grow up with my sister – I missed my family and cried for them. I wanted them to come and take me home. But they did not come. So in the end I gave up crying for them.”

Martin was, in his words “one of the lucky ones” who got out of institutional care. He built his own life, “packed full of books, music and sports,” and a marriage to his wife Lynda. It was a life dedicated to solidarity with other disabled people, especially those with learning disabilities.

Martin campaigned so that others would not have the same childhood he did:

“Disabled children should be able to join in and be part of all the things happening in their community. They should go to their own local school so they can learn from their friends in their neighbourhood and be the best they can be and enjoy life like anyone else.”

His was a hope for “all the children of tomorrow”, that they “grow up in caring, well supported families and that communities and societies shift to be inclusive of all people.”

“I believe every person can live in the community with the right support – no ifs, no buts, no maybes.”

Martin's advocacy was trailblazing. Among other achievements, he was only person with an intellectual disability to serve on the UN Committee for Rights of Persons with Disabilities, or indeed any UN human rights treaty body. Many were profoundly touched by meeting him, and he is mourned widely across the disability movement and his local community.

For more memories of Martin, see a recording of his funeral service. There is a 2014 biography of his life Becoming a Person, but I'm not seeing how to get a copy. And there are further tributes from Inclusive Greens, People First NZ, Inclusion Europe, Inclusion International, Disability Rights Fund and International Disability Alliance.

Connecting with others

Thanks to so many of you – 132 – responding to the Debrief reader survey. The results are full of celebration of the content, good ideas for further coverage, and some points for me to improve.

It's great to hear how reading the Debrief has impacted you, whether that's at work or at home. I'm thrilled that many of you feel connected to a global movement by reading it. And I'm touched to hear how for many readers it's part of reflecting on your own disability journeys.

Among many kind words, I particularly appreciated Gloria Bennett's:

“I am a disabled person, but have only been working in disability justice for the last two years. In that time, the debrief has helped me to gain both a greater breadth and depth of knowledge around the work being done internationally, and resources to share in my own work. It also featured an essay I wrote, which helped connect others to my own work. It's an excellent resource.”

Building capacity and knowledge is essential for our sector to achieve its goals. And I've long felt this to be especially important for those starting out. So I love that the Debrief has played a supporting role in Gloria's career and I look forward to sharing more writing from her in the future.

“I do not know if my struggles qualify”

The survey also gave me a better idea of the profile of folk reading the Debrief. I asked if readers' work or study was related to disability. 48% said yes, a lot; 24% said yes, sometimes; and 18% said no.

And I also asked if folk identified as disabled. 49% said they did, 34% said they didn't, and 14% said it's complicated. I followed up with some of the “it's complicated” crowd. One reader told me:

“I've had a career connected to thinking about disability, and I've always said I wasn't disabled. But with time I've experienced disability. In my world it's political to claim that identity, and it makes me feel like I shouldn't say it.”

And another explained it was also to do with the condition they had:

“Being a person with mental health problems (anxiety, depression and dissociative disorders) I do not know if my struggles qualify to be considered under disability. It is a conscious battle of how much space I am taking and if the disability space is even mine to take. There is a lot of loud voices within disability world especially online which I feel creates boundaries on who can/should identify with this, and I want to make sure I only take or keep space as needed.”

It's interesting these tensions with the label are felt precisely by people closely connected with work on disability. Disability is a broad church, so it's striking that people on the edges don't necessarily feel the door is open.

“A step backwards”

Some readers didn't love that I asked about whether they identified as “disabled people”, or that I use that phrase in the Debrief. One respondent to the survey called it “very offensive” and a “step backwards”. They prefer the phrase “persons with disabilities”, which is the language used in the United Nations Convention.

The discussion over these terms is long-standing. The case for “persons with disability” is that it puts the person first, and avoids having their humanity denied or them being reduced to their impairment. On the other hand, the case for “disabled” person is that it means the person is disabled by society, and/or that “disabled” is part of identity rather than something you can be with or without.

There isn't one term that has universal acceptance. For many, including myself, I don't feel the difference so strongly. But for some these are important distinctions. They're tied to how we describe ourselves individually and choice over these terms is often related to a political position or advocacy tradition. Choosing the wrong term can be seen as rejecting a direction of change.

With that said, it is perhaps a good chance to explain the editorial choices I make about language on the Debrief. I haven't been a rush to do this, and so it's four years and 100 editions into a disability newsletter before I get to my note on language choice.

A diverse community needs diverse language

From the start the Debrief has used both “person with disability” and “disabled person” interchangeably. These days I probably use “disabled person” more frequently. Where I'm writing about others, I try to use the language they themselves choose.

As a writer, I find it awkward to insist only on one formulation of the phrase. As a British person, “disabled person” is the accepted term in the UK. But as someone who works with international organisations, a lot of my writing uses “persons with disabilities”.

And as someone writing an international publication, I push back on the notion that we should search for one phrase to be universally applied. Different people have different preferences. Just because we might see a phrase as having a specific political meaning does not mean that others agree.

So in my role as editor I encourage contributors to use either, or both, as they prefer. Last week, Celestine's article from the UK used “disabled people”. Later this month, an upcoming article from Indonesia will use “people with disabilities”. Last month, Alex's article from Nigeria didn't use either.

We say that 16% of the world's population has a disability. The majority of them do not use the word “disability” to describe themselves. To understand disability requires us to make space for diverse perspectives and diverse ways people describe their own experiences.

The highest standards

Readers have written me to share initiatives they're involved in or benefit from...

The highest standards. Juan Ignacio Perez Bello has been telling me about elections to the UN Committee on the Rights of Persons with Disabilities. Elected by governments, these individuals have the “important task of upholding the highest standards on the rights of persons with disabilities”. Juan shares a summary of info on the elections and candidates.

Fifth largest workforce in the world. Stuart Moore, in England, wrote to tell me about the National Health Service's (NHS) 2023 Workforce Disability Equality Standard. The NHS employs approximately 1.4 million staff and 23% have declared a disability or long-term health condition. Half of them feel they have equal opportunities for career progression.

Contributions to retirement. Following a question about savings and investment accounts for disabled people, readers told me about Canada's registered disability savings plan (RDSP). It's a pension with tax credit and generous government contributions. Marc told me about the importance of it in his life:

“I’ve been fortunate to be employed for more than a decade, and I’ve participated in various retirement savings programs during that time, and yet my RDSP is larger than all of my other savings accounts combined, so it can make a significant contribution to saving for retirement for people with disabilities.”

“Firstly, I love food”

“Firstly, I love food.” Via the reader survey, Dina Hassan shared her Nutrition D-List, a newsletter on nutrition from a disability view, “shamelessly embracing shortcuts and convenience”.

“With frankness, mockery and philosophy.” Swiss journalist Malick Reinhard has just launched a French-language disability newsletter or “epistolatory adventure” called Couper l'herbe sous les roues.

“There is nothing like this on the internet.” Inbox Collective asked newsletter writers what newsletter they always make time to read and among a wide collection, Tanmoy “Dada” Goswami was very kind about the Debrief. Tanmoy's Sanity is one of the inspirations in this work.

When the wolves take me away

And, to close out with some music:

“Bless my heart // When the wolves take me away.” Following on from a discussion of a new deaf K-pop group, Ai Lin told me about the K-pop star DPR IAN and how his music and videography explores bipolar disorder. “Don't go Insane” is a haunting track.

And while I've closed the reader survey, I always rely on feedback to strengthen what's going well and course correct where things aren't. So do stay in touch!

Cheers,

Peter

p.s. an earlier version of this article referred to Sir Robert Martin without his title, and this has been corrected.

Acknowledgements

Thanks to readers for being in touch and again to everyone that took time to fill out the survey. And as always thanks to Áine for advice on this piece.

And, of course, to the individuals and organizations whose support makes the Debrief possible.