Today we explore the complexities of care, get dolled up, save lives with sunscreen and smuggle cocaine. All this and much more in today's edition exploring the latest disability news.
As well as our world tour of what's going on for disabled people, there's some good news for the Debrief of further support for what we do.
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Disability Debrief is supported on a pay-as-you can basis. This edition has support from Sightsavers.
Wary of being too dependent
Care has been an important theme on the Debrief this year. I wrote about how we look after each other. And from India, Anna Maria explored care provided by disabled people. These are complicated issues for us as individuals, and the disability sector as a whole.
Also in India, CREA, a rights organisation based in Delhi has just published a beautifully illustrated feature exploring activism at the intersections of disability, sexuality and feminism. Emerging from these connections are questions about care, consent, and relationships.
Understanding how consent plays a part in sexuality and relationships leads quickly into a discussion of the multiplicities of care and the dangers within it. CREA's Geetanjali Misra sees care as coming in “many forms”:
“It can emerge in the context of interpersonal and family settings, public spaces, institutionalized settings or as part of sexual relationships. Caring relationships, and how consent is navigated within them, encompasses a wide spectrum. It’s a continuum of being empowering at one end to being abusive or violent at the other. It entails unequal power relationships that make exercise of consent fraught and challenging.”
In some of these contexts, consent is denied. Janet Price, an activist from the UK describes how sometimes even the capacity to consent is denied:
“Many people hold a general presumption that disabled people have no boundaries, that the bodies of disabled people become accessible space, available for any and all to touch in any way they choose. It’s the danger of this underlying presumption that has led to widespread abuse of disabled people. You can see this ‘no ask’ practice at work in hospitals and in accommodation for people with disabilities, where it’s rare to see staff request permission before they touch an individual’s body to perform a medical act or to provide daily care.”
The feature illustrates these dynamics through the experiences of disabled people unable to protect or assert themselves because assistance could be withdrawn. Nu, of Revival Disability India, has faced incidents and relationships where their boundaries were violated or relationships became abusive.
Not only does Nu have to tread carefully in daily interactions, it's also made them cautious about relationships in general:
“There’s so much wariness — wariness of being too dependent, wariness of letting go of a romantic partner you are dependent on and being afraid that there's no one else who will accept us, except the abuser.”
Tears in the middle of the street
There's a lot to reflect on in Nu's words. Dynamics around assistance can be near the core of who we are. I think of tensions with people I love, as we navigate assistance and our different perspectives about it. And I think about how attitudes to assistance shape who I am.
I am a friendly extrovert: part of this is my nature but another part is very consciously because I might need help from people. I am also fiercely independent and perhaps dealing with dependency has made me cautious about some forms of intimacy. Like Nu, I'm wary of letting myself go.
Existential questions about care and our identities are closely tied to practicalities. Even just doing the work to get the care we need can be totally consuming. In the UK, Tourettes Hero describes the loneliness and labour of needing to manage 24-hour support. They've kept track of the weekly admin hours (4.5), as well as the number of times it made them cry in six months (30):
“I hadn’t realised how intensely I was feeling this pressure until I got a text from someone saying they wouldn’t be able to help, that made me burst into tears in the middle of the street.”
The whimsical nature of care
It's not just as individuals that we are careful about care. These complexities pose challenges for advocacy too. When the United Nations made a seemingly benign resolution on an international day of care and support, the European Network of Independent Living (ENIL) worries that it just mentioned disabled people as a “checkbox exercise”.
For ENIL, the UN resolution gave too much emphasis to those providing support, “rather than the people receiving it.” ENIL cautions that there is a “return to the medical model of care”, emphasising the needs of carers and service providers over disabled people:
“The term “independent living services” is increasingly hijacked to describe services that do not fit this definition, such as group homes or sheltered workshops, in order to market their work and access funding. But in reality, disabled people are treated as merely objects of care and protection, instead of having real choice and control.”
Some go further. TCI Global, an international organisation of people with psychosocial disabilities, made a statement rejecting “support” being framed as “care”. For them, care has a “whimsical nature”, too dependent on often uncaring and inhuman social environments.
TCI argues that the concept of care is “null and void” within the scope of disability rights. Rather, our rights frameworks use “support systems and services”. Discussions around care mix the interests of care givers and care receivers, and for TCI this runs the risk of paternalism and “succumbing to service provider interests, diminishing the voices of persons with disabilities”:
“When service provider rights are brought in, without any acknowledgement of the harm caused by them, [what will also come is] impunity clauses, ‘best interest’ and ‘least harm’ arguments and practices. Considering the decades of violence by public and private service providers, particularly institution based ones, against persons with psychosocial disabilities, this particular formulation on ‘care’ is fearful and intimidating.”
Stagnating and backsliding
Outside of care, in other recent news...
Universal health turns out not to be universal. World leaders committed to “redouble their efforts” for universal health coverage. But the International Disability and Development Consortium is concerned about progress “stagnating and backsliding” and that the commitments made are not oriented to “effectively tackle inequities and expand access for all”.
Are disabled people getting protection from disasters? A global survey of over six thousand respondents from 130+ countries shows “limited progress in disability inclusion [in disaster risk reduction] over the past 10 years”.
Inclusive trade (and, err, smuggling)
“Trade policy does not pay sufficient attention to persons with disabilities” says a policy brief from the Ministry for Foreign Affairs:
“The report calls for a disability inclusive trade agenda that ensures access to affordable goods and services essential for persons with disabilities and emphasizes the quality of employment that trade can generate, not just number of jobs.”
Inclusive smuggling. Customs official in Hong Kong Airport noticed that the wheelchair coming through had its cushions and backrest re-stitched. Opening it up, they found 11kg of suspected cocaine. It's not the first time someone's used a wheelchair to smuggle the drug.
Learning to adapt
Mark of honour. Teresa Michals' new book Lame Captains and Left-Handed Admirals researches the lives of officers in the British Navy who lost limbs in battle. The most famous is Admiral Nelson, and Michals shows how injury didn't disqualify people, but the opposite:
“Losing a limb in battle often became a mark of honor, one that a hero and his friends could use to increase his chances of winning further employment at sea.”
Michals talks about the book in New Books Network podcast (no transcript).
“Walking around Kyiv teaches us to adapt”. In Ukraine, a disabled veteran of Mariupol explores the accessibility barriers of the city to visit a memorial for his comrades. (Short video, English subtitles hardcoded.)
Disabled by war. In Russia, the Social Insurance Fund was releasing information on those getting disability status, including whether it came from a military injury. Journalists used it to calculate 5,000 veterans had become disabled since the Russian full-scale invasion of Ukraine. So the agency stopped publishing the data.
A quiet force to be reckoned with
Moments in disability history. Disability Social History Project made a timeline with key events from the past five thousand years.
“A quiet force to be reckoned with”. The disability community and Debrief readers lament the passing of Canadian advocate Steve Estey at sixty years old:
“Steve has left us too soon, but not before making an indelible mark on his family, his friends, and the disability community which he tirelessly served. Steve was well known for so many things, but his eloquence, his sense of humour and his calm manner all drew a wide range of people to him, and resulted in many lifelong and important friendships.”
If you're in Jordan, there's a park I want you to visit. In a 2019 trip to Amman, I was lucky to meet Aya Agabi, founder of the Accessible Jordan Initiative. I was struck by her kindness and clarity of purpose. She passed away the same year and my heart still aches. Her legacy continues, however, and a park in Amman was inaugurated in her honour. If you go, send me a selfie.
Dolled up every single day
One of the ways disabled people are claiming space and social position is through clothes and fashion. In Uganda, disabled people are using fashion shows to break barriers and stereotypes used in advertising. Brands in the US and UK are creating adaptive clothing and showing them off on the catwalk.
In the United States, Samantha Jade Durán is in her maximalist era. Where she previously “hid behind layers of clothes” she now puts on makeup and gets “dolled up every single day”. For her, it's a way to take back her independence:
“Even if I’m just going to stay in bed all day and I can’t control my symptoms, I can control what I wear. These days, being unapologetically maximalist is a coping mechanism.”
Sunscreen saves lives
Sunscreen saves lives. A new report shows how people with albinism are at “grave risk” from the effects of the climate crisis. Muluka-Anne Miti-Drummond the UN expert on albinism says that “sunscreen is not a cosmetic product for people with albinism”:
“Deaths are preventable with good quality sunscreen and protective gear that is readily available to people with albinism. Sadly, many live in poverty and cannot afford these products.”
“We thought they would come and support our work”. An interview with Esther, CEO of National Union of Disabled Persons of Uganda (NUDIPU) includes a damning indictment of international organisations:
“NUDIPU is not comfortable with some of the big international NGOs. We thought they would come and support our work, build our capacity and offer technical advice. But what we’ve seen is they operate like [Organisations of Persons with Disabilities] themselves, in competition. We are not benefitting much from their presence in the sector.”
Sign-language in Africa. A whistle-stop tour on deaf Africans struggling to access their rights profiles the situation of sign languages across the continent.
Banks in Egypt improve accessibility. I was pleasantly surprised to see the range of measures taken.
Stories move the world
Last time I noted briefly that Disability Debrief has new support from Disability Rights Fund (DRF). They are the latest in a growing number of organisations who join with readers in making our work possible.
DRF's executive director, Catalina Devandas, is a friend of the Debrief and explained why they've contributed:
“Disability Debrief is creating powerful counter-narratives in the face of structural ableism. Their stories and art highlight the power of grassroots movements for inclusion and justice. And the Debrief curates the fastest-growing library of disability news, with resources from 145+ countries. Stories move the world, and the Disability Rights Fund is proud to support the Debrief’s storytelling and analysis from a disability-lens.”
For an example of the work that DRF do to support the global disability movement, see this recent video on pride and inclusion in the Pacific, on the very first LGBTQI-led disability rights organisation in the region.
I'm also happy to share that I've signed an Memorandum of Understanding with Center for Inclusive Policy. It gives a framework to our longstanding cooperation. They were the first supporters to this newsletter, and it wouldn't have been possible without them.
Alongside all this, the Debrief also got an organisational subscription from USAID, the US government's international development agency.
I love how the Debrief is helping organizations working for change on disability. I'm honoured and, frankly, floored by this support and the extraordinarily nice things readers say about it.
Invitation to remake the world
The changes we notice over time. Six disabled people share their experiences ageing: “time in a disabled body has nothing to do with age but all about the changes we notice over time.”
A ramp to the future. General Motors unveiled a wheelchair-accessible self-driving vehicle. A nice promo video shows the details and how your chair will be secured. I'm excited by this, which goes to show how much I assumed the future wouldn't be accessible. Why wasn't wheelchair-access in the design of self-driving vehicles from the start?
Images I've never seen. A contest to make disability-inspired art with AI creates some beautiful pieces. Contest entrant Akua Lezli Hope says they lifted her:
“I love, love love this invitation to remake the world. To envision and have images I’ve never seen of empowerment, energy and joy.”
How was your Halloween? Satire-site Squeaky Wheel celebrated spooky season by modelling a haunted house after a social security office.
Disability Debrief is supported by the individuals and organisations that read it.