Dialogues on Disability: Berlin (2018)

Participants took part in a weeklong programme of discussion groups, tours, workshops and interactive sessions with students from other countries including Brazil, Mexico and Germany at Humboldt University in vibrant Berlin. One of the first programmes of its kind in the world, this is a fantastic opportunity to share and explore global perspectives on disability and build long term relationships with students from across the globe .

Day 1: For once, not a minority

Hello! This is Erk reporting from Berlin. I'm introducing our week-long blog. We are at Humboldt University for a week, to learn about disabilities in German educational context. For the next 5 days, each King's participant will write one daily blog to reflect on our time in Berlin.

We're 4 students and 2 staff members from King's College London. We're participating in a programme called Dialogues on Disability.

Each year, four universities from four different countries come together to provide an open discussion space on disabilities. These countries are: England, Germany, Brazil and Mexico. Disabled and non-disabled staff spend a week sharing their experiences of living in 21st century society. We discuss ways in which disabled people are excluded from everyday activities, and brainstorm solutions.

“A key message from the week was that humanity is united in their differences - regardless if someone is blind, deaf, or has any other sort of difference, we are
human at our core. When fighting for inclusion and respect, we must remember our common features and march with solidarity” - Erk Gunce

We have just finished our first day at Humboldt University. We were welcomed by senior university staff, such as the Director of the International Office and the Head of Disability Services. I appreciated that these senior staff took their time to welcome us, as it shows how much they value inclusion. We looked back at the past of Humboldt University, remembering that it was not always a very inclusive space. The university, during World War 2, was at the centre of the Nazi movement. Many Jewish scholars were fired and forced to leave the country. By discussing their past, the university staff emphasized how far inclusion support has come. I was proud to see the that Humboldt is changing, for the better.

We continued our day with a ‘travel challenge'. Participants from four universities were split into groups and given a destination to find. While trying to reach that destination, we were asked to document accessible and inaccessible aspects of Berlin. This task allowed me to really stretch my mind and think about different disabilities. The participant body includes students who are visually impaired, students who are dyslexic, students who use a wheelchair, students who have hearing loss, and many other disabilities. Hence, we were able to identify which aspects of a city can pose barriers to different disabilities. Some of the barriers we faced included: pavements without tactile signposting for blind citizens and wheelchair ramps which were too steep. We also saw outdated tube maps at the underground station. Outdated visual information poses a challenge for persons with hearing loss, because they cannot rely on the verbal announcements made by the metro crew. We were also reminded that mentalities of non-disabled citizens are as important as pavements and signages. One of the passers-by
made a joke about one of our fellow participant's disability. This shows that society still has a lot of improvements to make.

What I love about this programme is that, for once, disabled people are not the minority. A majority of the participants are disabled. Our disabilities range from learning difficulties to sight loss, mental health conditions to mobility impairments. It is amazing to have an open space for discussion on the every day challenges faced by disabled people. It is relieving to know that we can discuss our disabilities without fear of judgment. I am grateful to King's College London Disability team for this opportunity to have hands-on, immersive learning experiences.

Learning does not only happen in the classroom. In Berlin, the disability team are encouraging us to learn by dialogue and observation. In an era whereby we are fixated on reading articles and long books, I appreciate this opportunity to learn informally.

Day 2: Tour of Bundestag and Euthanasia memorial

Hi, this is Steffi, I am one of the Assistant Disability Advisers at King's and have been supporting the Dialogues on Disability programme for the first time this year. I am also originally form Germany which put me in an interesting position having some in-depth knowledge about the workings of our host culture but also being able to perceive the experience through British eyes.

The second day in Berlin started with a tour of the German Bundestag followed by a guided walk around several memorials dedicated to groups of people who were persecuted and murdered by the Nazi regime in Germany. We had to go though a very thorough search process to get into the building. Inside we were greeted by Sven Drebes and Carola Pohlen. Both of them work for the green party in the German parliament and have been involved in disability campaigns and disability rights activism in Germany. They gave us an overview of the legal and political contexts disabled people are faced with in Germany. They seemed particularly worried and upset about a recent change in legislation which they feared would increase the barriers facing disabled people in Germany.

It was really eye opening to explore the German legal and political framework with a group of students from different countries. German legislation can differ greatly, depending on where in the country
someone resides. I had never noticed how strange and unfamiliar the very particular version of German pluralistic governance might seem to an outsider and really enjoyed this new perspective. Following the insightful discussion, we were then invited on a guided tour through the Bundestag.

The group enjoyed the tour through the Bundestag, particularly the stunning views from the very top.

After our visit to the Bundestag we stopped for a quick traditional German lunch. After that we met with a city guide who showed us some of the major historical and cultural sights around Bundestag.

Apart from getting a good feeling for the vibrant energy of Berlin, the focus of the tour was also on helping us connect with the oppression and persecution suffered by minority groups during the Third Reich.

It was a strange and really touching experience to visit the Euthanasia memorial with a group of people who mostly identified as disabled. My thoughts kept racing back and forth between friends and members of my family who would not have survived the Nazi persecution of disabled people and our group who stood in the middle of this historic memorial representing that what had been othered. Tears were rolling down people's cheeks. I think we all felt connected in a moment of raw emotions and vulnerability. We left the memorial deeply touched and with a sense of community and connectedness.

Day 3: Disability, media - and pretzels

Day 3 of Dialogues on Disability was very special, not least because Humboldt University catered to our newfound love of pretzel culture but because our schedule allowed us to explore how society and the media in Germany perceive disability, followed by how higher education is aiming to become more accessible and inclusive.

Picture Note: When in Germany, be careful of ordering a Butter Pretzel to take away. In line with the stereotype on Germans being a lot more ‘literal' in their speech than the British, this delight is quite literally filled with a soft spread of butter. I unfortunately discovered that this stops being a delight once you put it at the bottom of your rucksack...

Our first masterclass began at an NGO, which is dedicated to raising awareness of disability. Here, we learnt about the use of language and media. An insightful aspect was the debate around the use of ‘inspirational' to describe disabled individuals/who have a disability. One participant suggested that labelling with this term is patronising, as the word alludes to those who are disabled/have a disability as having exceeded low expectations of them, already set by society. Such connotations could imply divisions between those who are non­disabled and those who are not; an issue, which one participant claimed could be represented by the difference in attention that is often given to the Olympics, by comparison to the Paralympics.

However other participants claimed that language such as ‘inspirational' is for celebrating achievements in the context of challenges that those who are disabled/have a disability may face, which are not experienced by non-disabled people in society. In this sense, there may be valuable lessons to be learnt in the era of social media, which has allowed a culture to emerge, where it is common for people to publicise the silver linings of their life without the struggles that often accompany these and in turn, create a false version of reality. Perhaps, this could highlight benefits for everybody in openly celebrating their successes, alongside the testing experiences they have faced on the way, as their stories can be a means of connecting with others who can relate.

A tour of Humboldt's Library followed soon after, where we gained insight into the facilities offered to make the university more accessible. I was particularly drawn to the use of a designated area for those who are disabled/have a disability to work (perhaps an idea for King's - hint!), as well as the clear use of signs for additional hearing aids if required. My newly gained education on the availability of differing adjustments for the study experience raised interesting questions on how much a university should publicise its facilities for students who are disabled/have a disability and how responsible a student is for asking for extra assistance, if it is required. In our later talk on higher education, it was highlighted that students can often feel too stigmatised to request help and/or may not know what facilities are available to them.

In the afternoon, following some of the most filling Italian lunch I have tried, we listened to a talk that touched on the UN's Convention on the Rights of Persons with Disability and how this feeds into the inclusion and accessibility strategy of Humboldt University. One interesting point highlighted was whether disability should be raised awareness of, alongside aspects such as ethnicity, religion, income level, gender and sexual orientation or whether there should be advocacy for inclusion that should focus on disability separately from the earlier mentioned causes.

On one hand, this approach may go further in highlighting the barriers that those who are disabled/have a disability face in society, when this cause can become diluted for any number of reasons, such as a disability not being visible and non-disabled people not realising or not seeing a need to accommodate for this. However, placing disability under an umbrella alongside other causes for inclusion may create a greater awareness of disability within society for two purposes. Firstly, disability is highlighted as not existing arbitrarily but intersecting with other aspects of our identities; for example, differing cultures can perceive disability through a variety of lenses and in turn, can affect an individual's own self-perception. Additionally, a sense of alliance between different causes on the basis of feeling excluded from society can create strength in numbers and therefore, the amount of awareness that disability receives in general.

As a whole, the day left me with no doubt that there is still space to debate with the amount or type of ‘accessibility' that is offered to those who are disabled/have a disability, whether in the UK, Germany, Mexico, Brazil or India

Day 4: Empowerment and language

Our day began as did the majority of our days in Berlin: bright and early, if not quite as early as our hosts might have preferred...

I was fortunate enough to be one of the delegates who used the shuttle bus each morning, being taken directly to Humboldt Universitat - which I was grateful for, following Monday's difficult experiment with wheelchairs and public transport. As a result, several participants and I arrived at Humboldt rather before the rest of the team. While waiting, we enjoyed the local cuisine (as modelled by Erk from King's!) and were introduced to both Hannah, who was to lead the day's first workshop, and the concept of Mad and Disability Pride. Lea, one of Humboldt's participants for Dialogues on Disabilities, has helped to organise Berlin's Mad and Disability Pride events for several years now, and Hannah had been in attendance at this year's parade. These discussions between scheduled activities were a large part of what made Dialogues on Disabilities so enlightening for me. The ideas of proudly highlighting your or your body's needs, of celebrating your capabilities in such a joyous way, of expressing solidarity for others' needs - I found these ideas profound and thought-provoking. They happened to feed neatly into Hannah's theme: empowerment.

I think a lot of us regarded this as an important topic. In my experience, disability can come with much disempowerment; there have been many occasions when I have conflated my estimations of my own capabilities or my sense of self with the effects of my disability. Perhaps that sounds illogical - I suppose it is. Yet, when such symptoms or their effects on your activities are your constant or cyclical experience, the lines between self and symptom might haze, especially when various systems inadvertently exclusive the disabled. The insidious nature of exclusion can thus disempower individuals in a multitude of ways: and Hannah had some responses to that!

We started by sharing something that makes us happy as ‘knowing what makes you happy is better than knowing what makes you sad'. I found myself agreeing with and finding great value in this seemingly simple dictum. It kind of had everything and nothing to do with being disabled. Positive psychology is the idea of going beyond that which makes you feel ‘ok' and aiming for that which makes you feel ‘great!' and enables you to thrive; to me, this seems universally empowering, but I think it perhaps holds particular relevance for people with disabilities. One's pleasures or aspirations might have nothing to do with physical or mental health, yet end up pushed to the background amidst necessary attempts to take care of a disability's symptoms.

Hannah's exercises prompted us to accept our health and resultant needs, but to still focus on our wants and our personhood - as someone whose conditions have sometimes taken centre stage, I found this an inherently empowering shift. The workshop as a whole was a moving experience.

Next up was a presentation by Erk Gunce, one of KCL's participating delegates, on the language surrounding disability. Poor Erk's comprehensive and excellent presentation inspired so much discussion that we only made it through a fraction of his slides - the hubbub of cultures and languages in the room generally resulted in a proliferation of ideas, and the linguistic nature of this topic particularly benefited from that. We debated the merits of various ways of articulating disability and the language surrounding the disabilities we might ‘overcome’ - and how our so doing might ‘inspire’... A lot of us found the same expressions to be grating or cloying. We essentially concluded that there are few hard-and-fast rules and that language is a tremendously subjective means of expression. Many faux pas are committed by those who feel too awkward to ask; discomfort might mean people's words don't quite express their good intentions - that's perhaps a cheering thought to bear in mind. Much of our debate centred around the notion of admitting our various diseases/conditions/disorders/mutations/[preferred linguistic term] cause problems, and how we can most accurately refer to those problems - or whether they are in fact caused by societal barriers rather than the conditions themselves. To quote one of the videos Erk included, ‘there's no such thing as normal'.

I'd like to briefly mention another unscheduled educational activity - the various needs of our participants provided endless opportunity for empathy and for gaining insight into others' experiences. I walked along with a friend who has dyspraxia and excellent taste in dessert. I knew what dyspraxia was, but only in an abstract sense; I understood it a little more as I saw my friend struggle to open an ice cream whilst walking. We stopped for a moment, briefly exchanged an explanation - and moved onto making mutually deprecating jokes about it.

Our day finished with a discussion of inclusion in German museums, held in Tuchtig, an accessible venue. We were shown the advantages of seemingly small architectural details, such as a lack of doorways - helpful for those with visual impairments and for wheelchair users - and meeting rooms with tables of varying height and without legs - to accommodate different models of chair, wheeled or otherwise, and also easier for the visually impaired. The speaker stated they did not talk a lot about inclusion, but that they lived it by aiming to remove barriers and to recognise that some people's voices are presently outside society. Unfortunately, some of these efforts seemed somewhat curbed by finances: perhaps a global issue for NGOs doing excellent work.

We then heard from two representatives of Berlin's museums regarding some of the struggles they encounter in the architecture of museums and the very concept of heritage. Debates surrounding the inclusion of those who might need to physically interact more with exhibitions - for instance, those with visual impairment being allowed to touch exhibits - versus the notion of preserving artefacts for future generations. Anja, who leads such interactive tours around art exhibitions, reported a mixed response from the general public: some thought it was ‘magic', while others deemed it unfair that some people were permitted to touch the statues. Perhaps this is a sad, but not hopeless, microcosm of inclusivity efforts everywhere.

Our day ended somewhat wearily. I felt aware of many problems, yet not without hope that others might increasingly benefit from that much- debated ‘inspiration' - or, indeed, from the social capital that can be afforded by including on an individual level.

What we took away from Dialogues on Disability

Alice Chappell, Bachelor of Arts (Hons) in English Language and Literature

It's really hard to articulate why Dialogues on Disability was such an important experience. It seems obvious to me that it was, even though it has only occupied a comparatively small part of the academic year - a small part of the summer, even. It also continues to be an important experience; I still find myself reflecting on our discussions and antics, and trying to live the ideas we espoused. Academically, the programme provided a fascinating conflation of sociology, philosophy, history and other topics. We utilised this interdisciplinary approach to deconstruct societal and our own assumptions surrounding disability, in order to understand how we, as individuals and parts of various cultures, might better include. The programme's setting was significant, also. My experience of being disabled is that my abilities to travel and to generate income are often affected; this programme enabled me to widen my horizons and enriched my general student experience, not only by facilitating something that is difficult for me, but by so doing in a way that prioritised my dignity. Dialogues on Disability was a fantastically inclusive melting pot of different needs and backgrounds, and this variety meant that none of us seemed ‘other’ - perhaps a rare and profound experience for disabled students. It certainly was for me.'

Erk Gunce, Master of Arts in Education Management

It's been a very educative week for me. It was the first time I had a long chat with a blind person about his needs. It was the first time I openly discussed learning difficulties. Something I keep observing in different cultures is that invisible disabilities are more stigmatised than visible disabilities. For instance, I learned that in Germany, mental health disabilities are more stigmatised than physical disabilities. I realised more needs to be done to build awareness around mental health. After a whole week of discussions on disability, very little was said about mental health, and most discussions focused on physical disabilities.

One of the most exciting moments of the week was the workshop I led on language. I really enjoyed having an open space to discuss the labels society use to talk about disabled people. It is very important to have such open yet respectful conversations around inclusion and oppression. Which words are OK to talk about disability? Special needs? Differently abled? Wheelchair user? Wheelchair-bound? Different people have different opinions, and it's so important to ask each individual which words they prefer.

A key message from the week was that humanity is united in their differences - regardless if someone is blind, deaf, or has any other sort of difference, we are human at our core. When fighting for inclusion and respect, we must remember our common features and march with solidarity.

Here's to a barrier-free world.