Illness moved in waves

Exploring chronic illness, deafness and facial difference

Dear Debriefers,

Exploring recent news gives us a chance to go deeper into different experiences of disability.

This edition shares writing and research on living with a range of impairments: chronic illness, deafness and facial difference. It explores questions of identity, inclusion in work, where disability starts and ends, and how we advocate on it.

This is the adventure I found going through the news curated at the start of the month. If you didn't already, find your own by exploring the resources there.

Disability Debrief is supported on a pay-as-you can basis. Thanks to Into Inclusion and Say for renewed contributions.

Illness moved in waves

In the United States, Gloria Bennett writes about her chronic illness. Given its unpredictable nature she wonders if she could claim a disability identity. When she developed an autoimmune disease:

“The level of my symptoms fluctuated — from fatigue to fevers to neuropathy to cognitive changes, nothing about my experience was the same two days in a row. With my symptoms, my abilities varied, too. Some days, I had the energy to complete full paintings or build furniture. Other days, I couldn’t hold my arms up long enough to wash my own hair. Illness moved in waves.”

Bennett points to how disability advocacy has made the argument that we are not sick and in need of a cure, but in need of adaptations and rights. But what happens if you are ill?

Bennet wants to make space for chronic illness in those advocacy spaces. She borrows from principles of disability justice to see people in their wholeness, and focus on a collective liberation rather than individual rights.

“As sick people, much of our advocacy work is in relation to healthcare access and equity. Those things can be true while we also insist that disabled people don’t need to be fixed or cured to have value. That we are whole people, not patients.”

Energy limiting conditions

Speaking of fluctuating conditions, in the United Kingdom, Astriid have a new guide on inclusion in the workplace and energy limiting conditions. It gives an introduction to energy limiting conditions and provides guidance to both employees and managers:

“Having limited energy, or energy impairment, is different to feeling tired. It is often compared to feeling like a faulty battery that never fully charges, runs out of charge quickly and needs frequent periods of recharging. Small daily living and work tasks may completely deplete a person’s available energy, requiring them to stop and ‘recharge’ frequently throughout the day. This can have an impact on the number of hours an individual can work, as well as the pace of work.”

The guide gives a helpful framework to explain these conditions and an overview of how to communicate about them in the workplace. A general framework for adjustments is proposed as well as modifications in recruitment and retention in work.

It did also leave me wanting a sequel – further guidance that goes beyond adjustments and looks at different ways of structuring at work. It's a desire that comes in large part from my work on the Debrief, where I've learned to build time flexibility into the way I work with others.

I've had to unlearn a lot of what made me good at work with large bureaucracies, where deadlines are one of the principle tools of accountability and management. And it wasn't just changing my assumptions and practices. Making time flexibility possible also needed changes in the way the work is funded, ensuring money wasn't tied to specific outputs and timeframes.

Making more possibilities to work across health, energy, illnesses and disabilities means more people can contribute in more diverse ways. Patience is a form of access. Learning to do these things and finding the structures to do them has, unquestionably, been good for the Debrief.

“I sign, therefore I am”

In Finland, Juhana Salonen's personal essay explores why sign-language is an important part of a deaf child's identity development. Born into a hearing family he was raised primarily in Finnish and doctors did not recommend signing.

Salonen had some sign language but not enough to follow along fully. He was isolated on both sides:

“I didn’t understand what was being discussed in the [signing] group, and those times have stayed with me hard. It was painful for me to be in a group where I didn’t understand anything. The same was true for the spoken language, so I was doubly lonely. It felt really bad. It was like being in a closed room with no way out.”

Only at twenty years old did he start to learn more Finnish Sign Language and get to know other deaf people. Having role models and more linguistic ability transformed him:

“I searched my heart and realized that sign language would be my emotional language. As I began to sign more and more, I understood myself better. I discovered my identity and my role in society.

As my sign language skills got stronger, my Finnish language skills also improved. This gave me a strong, bilingual identity. At the end of a long process, I am today a very proud sign language user, and Finnish Sign Language is a strong foundation of my identity.”

Salonen's essay argues for these opportunities to learn sign-language from a younger age. He wants children to grow up so that they can “accept themselves and have linguistic diversity” in both spoken and signed languages.

Not something they entertained

In the United States, an interview with Teresa Blankmeyer Burke, a signing Deaf professor of philosophy, explores a field she has labelled “Deaf philosophy”.

To even get into a position where she can do that, Burke has had to navigate the hostilities of academic spaces that don't expect someone like her to be there. They are so marked as hearing-centered spaces that when she's been to conferences with an interpreter, colleagues assume she is there to train the interpreter, rather than participate:

“The idea that I could be a Deaf (Brown woman) philosopher was not something they entertained.”

She notes that the more “concerning and challenging experiences” she had in her early academic career don't come from students or from administration but from her colleagues. A particularly striking example comes from a conference where she was one of six philosophers gathered after a talk:

“I tried to chime in to add my (spoken) voice to the conversation, but was repeatedly ignored. After about five or so instances of this, I decided to sign my contribution, asking the male interpreter to add his voice. Even though the context of my observations was unchanged, the addition of a sonorous male voice shifted the dynamic, and people started paying attention to my words, now mediated through a spoken male voice!

When I signaled to my interpreter that I was ready to start speaking again (I wanted to make some particular philosophical points and the interpreter did not have the knowledge to do this in the way that I could with my disciplinary expertise), one of the men in the group stepped in front of me, visually blocking me from the interpreter and signaling with his expression that my contribution was not welcome. I wish I could say that this was a one-off, but this was not a rare occurrence.”

Now having secured her space in academia, Burke teaches at Gallaudet university, a university bilingual in English and ASL. She's had to think about how to do philosophy in a signed language:

“how to teach philosophy in a bilingual environment using written English and American Sign Language (ASL), how to teach philosophy in ASL where there is no standard lexicon of philosophical terms in ASL or ASL translations of canonical spoken/written language philosophical texts, and how to do this in a way that includes and incorporates signing Deaf community social and cultural norms.”

It's not just the teaching method that's changes, but her approach to philosophical issues and response to being in spaces “created by and for nonsigning hearing philosophers”. She illustrates this by showing how the answer to “what does it mean to be deaf?” depends on who's answering:

‘When I pose this question to my colleagues and students in the signing Deaf community the primary responses I get are tied to questions about language and cultural identity — for example, “What does it mean to be a member of this community of people who use a signed language?” When I offer this question to nonsigning hearing people, the responses are very much focused on an audiological or pathological orientation — “What does it mean to be in the world without the sensory experience of being able to hear?”’

Guilt and blame culture

Research from Face Equality International reveals the stigma faced by people with facial differences in Mexico, Nepal and India. The research shows profound and sometimes violent exclusion, whether these facial differences come from scarring, burns, or conditions like cleft lip or palate or Treacher Collins Syndrome.

Children with facial differences can be abandoned, hidden or even killed by their families. In broader society people experience bullying and exclusion. Many of the cases of stigma stand out for how needlessly cruel they are. One example, shared by the survivor of a acid attack in Nepal:

“One day I was carrying a puppy and I was walking on the street and a school student came by. And say ‘what cute puppy and what a horrible bad person that is carrying a cute puppy’ Other students said ‘the one who is carrying is so horrible they were just comparing me with the dog’. I didn’t say anything I just come home and I cry a lot.”

The research makes a valuable contribution not just by showing experiences like these but illustrating the complexities of stigma, its multiple sources, and evolving nature.

In Mexico, younger generations of parents are “are less likely to believe superstitions about supernatural causes” of facial differences, but “the guilt and blame culture remains”. In India and Nepal stigma about facial difference interacts with colourism, prejudice about skin colour. And in both contexts interaction with other disabilities can lead to intersecting or heightened stigma.

Facial difference isn't always considered a disability, either by people with facial difference or by disability groups. It isn't necessarily seen as impacting on day-to-day activities and in some cases can be “fixed” by a medical intervention. But this research shows the “socially disabling” nature of exclusion experienced by people with facial difference. And further, it argues that there are important rights to be accessed through understanding these conditions as disabilities:

“Disability status for patients with disfigurements in Mexico, even if temporary, could be life-changing. In the early stages of life, where access to medical treatments is necessary for a child to eat, to breathe or to speak, to have financial support simply to attend hospital treatments could be life-changing.”

The case for disfigurements to be regarded as disability by law “is arguably stronger in a low-income setting” precisely because there might more be challenges to getting the treatments for them to stop being disabling conditions. As a result, Face Equality International identifies the need to work more closely with global disability non-profits to ensure those with facial differences are included and benefit from initiatives supporting disabled people.

Especially for me

And, two more to close out:

Not being realised. On Argentina, an article on the social construction of disability by María Pía Venturiello and Pilar Cobeñas explores the nationwide situation of disability rights:

“The human rights approach implies a relatively recent recognition of the demands of persons with disabilities, and this is expressed in the aforementioned specific regulations, and in our country’s adherence to general human rights treaties. [...] However, structural barriers and non-compliance with regulations have meant that changes proposed by the Convention that are necessary to ensure dignified lives for persons with disabilities, are not being realised.”

“Extremely dangerous for all but especially for me” Sarah's journey is a animated story beautifully told by Newcomers with disabilities in Sweden. While it's a fictional account it is based on details of real situations faced by refugees with disabilities migrating from Syria into Europe. It features smugglers, broken wheelchairs and inaccessible camps. But with help from strangers and support after arrival, Sarah has rebuilt her life.

Let me know about your journeys,


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Thanks, as ever, to the individuals and organisations whose support makes the Debrief possible.