In the UK one of the first pieces of disability rights legislation was the 1970 Chronically Sick and Disabled Persons Act. Over the next three decades, disability rights campaigners made a distinction between illness and impairment, for understandable reasons but perhaps with hindsight, this has had unintended consequences. Language is returning to including both, so disabled people and people with long term health conditions is a common phrase. So if you created a Venn diagram of disability and of illness, how big would the intersection be?

To explore this we invited three people who have fine minds and long term health conditions. We speak with UK based Catherine Hale, Founder and Director: Chronic Illness Inclusion, to US-based Katie Elizabeth who is editor and author and a director of Stigma Fighters and David Ager, a Location Analytics Specialist who comes with his personal take.

We had a fantastic, personal and insightful conversation. We highlight why some people with non-visible conditions feel like imposters, or they are not always believed. Why identifying as disabled when you’re long term ill is positive. Where traditional models of disability like the social and medical models help and hinder. There’s some compare and contrasts with US and UK viewpoints and we finish by asking our guests, what would help most in the future?

LINKS

Twitter accounts for guests and their connected organisations

Catherine Hale
Katie Elizabeth
David Ager 

Links to further reading 

Chronic Illness and Inclusion Project (CIIP) – 

Mobilising a Collective Voice for Social Change

What are energy impairments?

Images from Rea, thank you, Rea. https://www.reastrawhill.com University of Leeds
Here's a link to Rea's blog https://www.reastrawhill.com/post/chronic-illness-and-disability-am-i-disabled

Delivering training on disability means you get some excellent questions on the subject. A colleague of ours was recently asked, ‘Is impotence a disability under the Equality Act?’ We try and work it out by exploring the impact and then ask, what sort of discrimination might arise to see a case?

After last month’s hugely popular show about the word Ableism we move to another relatively new term - microaggressions. Defined as ‘an indirect, subtle or unintentional form of discrimination, we ponder when to let it slide and when do you tackle it? We wonder what might be the impact on someone after a 1000 of these?

WeThe15 campaign launched recently. Their website states, ‘WeThe15 is sport’s biggest ever human rights movement to end discrimination…of the world’s 1.2 billion persons with disabilities who represent 15% of the global population.’ Phil has some doubts, what is different, what change will come about or is it another campaign that lights up the sky before fading? Or as Simon suggests, is this is what’s needed, constant wheel-reinvention to keep the agenda moving forward?

Geoff tells us about two of his current favourites - The White Lotus and Have You Heard George’s Podcast? We round off with a bumper Listeners Corner. Maybe we mention you? Take a listen via the link below. 

Links

Erectile dysfunction (impotence) defined

Micro-agressions Wiki

There are many blogs that explore this subject well. Have a search and read. Here’s one from the BBC on language.

WeThe15  

The White Lotus on Sky 

The White Lotus IMDB

Have You Heard George’s Podcast? George the Poet

Have you noticed a change in how disability is discussed? For example, words like ‘ableism’ and ‘internalised ableism’ are perhaps not mainstream but more commonplace, especially on social media. 

We were thrilled when Professor Fiona Kumari Campbell, Professor of Disability and Ableism Studies, University of Dundee, agreed to come on the show. In an authoritative and entertaining interview, Fiona explains the most dominant use of ‘ableism’ isn’t as intended. Fiona’s concerned it is being used as a sledgehammer, without explanation, and its hostile use creates them and us. Fiona reminds us social theories are explanatory narratives, making sense about the world and a watershed moment for some, but they are theories, the social model isn’t a fact. Fiona suggests being disabled can be a constant state of ambivalence with the negative reminders we frequently receive having a cumulative impact. Fiona encourages us to have dialogue, to listen and above all else, to read more. 

It’s a treat to listen, think and absorb Fiona’s thinking, her concerns about what is happening, what’s been lost along with what we can do and what we need to think about in the future. 

And some reading and watching recommendations for you, Geoff returns with his Cultural Corner. This month it’s Mare of Easttown and The Shipping News. 

Biography

Professor Fiona Kumari Campbell, is Professor of Disability and Ableism Studies in the School of Education & Social Work, University of Dundee, Fiona is an interdisciplinary scholar-activist and not a traditional academic, being biracial, disabled, LGBT and from a religious minority background. Fiona has written extensively on issues related to disability – a philosophy & sociology of ableism, disability in Sri Lanka, law, biotechnology and is recognised as a world leader in scholarship around studies in ableism.

Further information and links

Papers and publications on Academia Educ

Contours of Ableism - Professor Fiona Kumari Campbell, Palgrave Macmillan, 2009

Internalised Ableism: The Tyranny Within from Contours of Ableism (also Internalised Oppression)

United Nations Human Rights video - What is Ableism? 

People and topics Fiona makes reference to 

Sayonara CP / Goodbye CP 

Japanese film featuring people with Cerebral Palsy 1972

Theory as a Liberatory Practice “I saw in theory…a location for healing” 

bell hooks, Glorian Jean Watkins 

Articulating a sociology of desire exceeding the normative shadows 

by James Overboe

"I refuse to be an accountant of atrocity."  Randall Kennedy  

General 

BBC article on micro-agressions and ableist language

NCCJ Handy primer with disability essentials 

Thank you to <

A full show, we have several current topics and two brilliant guests. Author Victoria Scott has written a book that is, influenced by her relationship with her sister (who is disabled) and the family dynamics when deciding if medical intervention is the right path. Geoff Adams-Spink tells us about Netflix smash, Lupin plus a new Radio 4 show, The Confessional where celebrities admit to behaviour they are not always proud of. 

And of course, you have Phil and Simon rattling through topics that have got them thinking. Simon cites disabled lawyer, Gregory Mansfield, whose insightful tweets show disability and ability happily co-exist and blasts those who get stuck at the ‘dis’ part. Phil wonders if Ambassadors actually have power and influence. We also discuss the seemingly more easy question of compulsory vaccinations for people working in care or support roles. 

Links to everything are below. We hope you enjoy the show. 

 Gregory Mansfield on Twitter 

FT  Vaccine compulsory for some jobs   Paywall

BBC New disability Ambassador 

Netflix Lupin trailer on YouTube

BBC Radio 4 The Confessional 

Victoria Scott on Twitter 

Patience by Victoria Scott  Bookstore

Patience by Victoria Scott Goodreads

In her recent Guardian article, Dr Frances Ryan raised concerns that ‘Remote working has been life-changing for disabled people, don’t take it away now‘  As we come out of lockdown, we know that some companies are expecting employees to be back in the office 9 to 5, seven days a week. Ryan also flags up concerns regarding cultural events. Is there a new risk that organisers might say disabled people can watch it online rather than making the event or venue accessible?

When two of Simon’s neighbours react differently to an on the street altercation he has, what should they do? What’s the difference between supporting versus defending? Can you tell when a disabled person is struggling but ok, compared to floundering and not ok?

Cultural Corner has us singing and getting the lyrics wrong after Geoff tells us about BBC’s Soul Music. We’re laughing when we hear of Jenny Eclair’s latest radio show, Little Lifetimes.

Links

Remote Working by Dr Frances Ryan 

Cultural Corner

Little Lifetimes by Jenny Eclair  On Audible and On BBC Sounds 

BBC Soul Music

Song Exploder 

Africa by Toto

One person, many facets: disability, ethnicity, mental health, being a woman and youth.

On this month's show, we are delighted to welcome Doaa Shayea. In her 22 years, she has packed in an extraordinary amount.

Doaa talks frankly about her mental health challenges and what she's learned about herself and the world she lives in. Energetic, resilient and determined, she faces the future with optimism and confidence. She also believes as disabled people we mature much more quickly that others as we become aware of others around us ands their reactions.

Born in Yemen with spina bifida. She and her family settled in the UK when she was aged 6. Attending a special school in the UK, Doaa quickly learned how to survive

At the age of 11, she was spotted as a potential wheelchair track star (Simon is so jealous) and still trains twice a day, every day. Doaa set up her beauty business in 2019 and has added disability advocate to her working portfolio.

As a young woman of colour with a disability, as you will hear, she has faced all sorts of difficulties.  She missed out on the qualifying time for the  Rio Paralympics by half a second.

It’s a compelling story, from someone who appears to have so much on her shoulders whilst maintaining her self-belief. Her motto: "In order to be the best you've got to fail hundreds of times and be strong enough to keep getting up."  

BBC article on Dooa

Dooa Shayea Socials 

Instagram 

YouTube

If you use the word ‘disabled’ with something you’re promoting, do people switch off? If you create a product to assist a disabled person but ignore this, are you authentic? Are products created for disabled people only used by disabled people…except the telephone, electric can openers, electric windows, pre-cut fruit, voice dictation, automatic doors…but other than these…? 

Does the word ‘disability’ point to a history, to culture, to shared experience?

Is using the word ‘disabled’ appropriate when talking about someone who has a long term or chronic health condition?  Where do ‘Energy Limiting Impairments’ fit? Does the social model struggle to get going when an individual struggles to get going? 

All these questions provide a rich source for Phil and Simon to discuss and debate. The questions come from new research into energy limiting impairments and Nike promoting their new Go Fly Ease trainer. We have a contribution from Lawrence Carter-Long, Director of Communications at DREDF (In California) and #SayTheWord evangelist. We wrap with your letters and emails. 

We don’t profess to have all the answers, and we know there are gaps. Let us know your thoughts [email protected]

Links

Slate Article - Nike’s avoidance of the word Disabled 

NPR Article - Disabled - Say The Word

Twitter feed - Peeled Orange Phenomenon 

Nike Fly Ease Shoes 

Research reports recently published about, Energy Limiting impairments 

People we mention

Catherine Hale Twitter 

Chronic Illness Inclusion Twitter 

Katie Elizabeth Twitter

Marie Pye Twitter

Kay Allen OBE Twitter

Lawrence Carter Long Twitter  

Ross Hovey YouTube

Ross Hovey Instagram 

Russell Silver Syndrome Podcast 

Dope Black Disabled 

Finally, Deaf people have to endure jury duty… ahem, can fulfil their civic duty like everyone else. After many years of campaigning Deaf people who use sign language, will be able to serve on juries. Common law rules ban the presence of a “stranger” in the jury deliberation room, but this will now be changed, allowing a BSL interpreter in. 

Wow, last month’s show was popular! We heard from so many of you so we bumped Listeners Corner to the middle of the show so you might get to hear it for a change.

We start the show with travel. In the UK, a disabled woman who was left stranded on trains and station platforms more than 30 times by a rail company, has been awarded compensation of £17,000. Meanwhile in the USA, Uber has been ordered to pay $1.1m (£795,000) to a blind woman who was refused rides on 14 occasions. We discuss both the tiresome lack of inclusion of disabled people on transport as well as the disparity between compensation awards in the UK and the USA. 

Can Artificial intelligence think, and feel, and one day replace humans? What is the journey a bag of drugs takes from source to user? Both questions are asked in our Cultural Corner with Geoff. 

Links

Uber payout, class action, blind people. 

Train payment for bad service 

Deaf Jurors allowed 

Electric Vehicles Charging Points Disability Survey

Cultural corner 

Klara & The Sun by Kazuo Ishiguro

Hardcover 

Audio 

ZeroZeroZero 

Trailer 

IMDB Listing 

Amazon Prime / Sky Atlantic / Now TV

Paperback book 

Audio book

This month we explore outer space or more specifically the opportunity that some disabled people might get to become an astronaut. Clearly, the European Space Agency see disability as a positive in their quest for new talent. However, when it comes to vaccines and ‘do not resuscitate’ notices and learning disabled people, there’s evidence that they are not a priority or perhaps worse. 

Would you date a physically disabled person? It seems The Disability Unit want to know why. But we can’t work out why they need to know. As Phil and Simon are both physically impaired people, we explore our thoughts when it came to dating.  

However, we start with Simon’s exciting shopping spree in Walthamstow and how a Pound Shop, Aldi and Asda can be heaven.  Geoff Adam-Spinks gives us two cultural recommendations - a book and TV series.   Wrapping up Listeners Corners has Mik Scarlett drop in with his thoughts on the ‘affirmative model' of disability.

Links

Astronaut with a disability

Frances and Jo Whiley 

Guardian changed headline

UK disability questionnaire

Disability Unit

Dating a Disabled person is great 

How to Date When you have a disability

BBC Ouch speak with Lucy Webster, who tried to sign up with the dating agency 

Buzz Aldrin on depression 

Mik Scarlett

Cultural corner recommends No One Is Talking About This – Patricia Lockwood. 

Print 

Audio 

TV show Rake

Guardian review of Rake 2016 (spoilers) 

A considered show this month with Phil and Simon. We review the deeply unsettling BBC documentary ‘Targeted - the truth about disability hate crime’. You can watch it on iPlayer. On YouTube, we've posted a video of us discussing the documentary. (links to both below)

Simon recently attended some equality training called Beyond Bias, delivered by Guilaine Kinouani from Race Reflections. Two elements struck him as relevant to disability equality, so we try and see if they apply. First was the concept of intergenerational trauma, and the second, a quote from Audre Lorde (pictured below) ‘There’s no such thing as a single-issue struggle because we don’t live single-issue lives".

Listeners Corner is a bumper one this month, and we finish with Cultural Corner, a new addition to the Show, where we recommend a couple of items you might be interested in. It could be another podcast, a book, a tv show, film, blog or article. Geoff Adams-Spink provides the suggestions.

Links

Targeted - the truth about disability hate crime  BBC iPlayer

The Way We Roll YouTube channel

Beyond Bias training from Race Reflections

Intergenerational trauma

Audre Lorde No such thing as a single-issue struggle because we don't live single-issue lives

Guilane Kinouani on Twitter

Adam Buxton podcast with Stewart Lee

Fall - The Mystery of Robert Maxwell by John Preston Hardback link

Fall - The Mystery of Robert Maxwell by John Preston  Audible audiobook link

Our thanks to Geoff Adams-Spink - Twitter @GAdams_Spink

You can find us in Apple Podcasts or Spotify 

If you have any comments, feedback or suggestions, please email us at [email protected]  

We hope you enjoy it.