Anna Ilchenko, co-curator of the «Human Commonalities» project, talked to Simon Hayhoe about the political struggle for the rights of the disabled, the utopianism of universal design and how modern technologies can help us make the world more comfortable and accessible to all.
Culture and human knowledge are still being produced predominantly by the sighted and for the sighted. Throughout history, this served as a prerequisite for the automatic exclusion of the visually impaired from public life. Similar processes applied to people with other kinds of disabilities. Nevertheless, in more recent times our understanding of perception and individual development, as well as of the fundamental bases of art, including visual art, have started to change. The struggle against inequality by various social groups (the struggle for women’s rights, LGBTQ activism, the movement for the rights of the black population and the Independent Living movement, among others), which finally resulted in a serious shift in their social position in the 20th century, paved the way for a possible change of the old paradigm.
Last October saw the completion of the «Human Commonalities» project — a joint initiative of the V-A-C Foundation and the Moscow Museum and Exhibition Association «Manege». The Vadim Sidur Museum in Moscow hosted the project with the «Human Commonalities» exhibition taking place there from September 10 to October 30, as well as several round tables and multidisciplinary discussions dedicated to the reassessment of disability in the context of the contemporary humanities. Simon Hayhoe — lecturer at the Education Department of the University of Bath and researcher at the Centre for Philosophy of Natural and Social science at the London School of Economics — was one of the invited speakers. Simon studies disability with a focus on education and art. Among his other academic interests is the exploration of the potential of inclusive, assistive and mobile technologies as tools for the inclusion of the disabled in the processes of cultural consumption. In addition to his numerous publications on blindness and the visual arts, Simon curated the The 4 Senses (in collaboration with the Royal London Society for the Blind and the Victoria & Albert Museum), and also carried out a study at the Metropolitan museum in New York evaluating the extent of its accessibility to visually impaired students.
— In your opinion, what social, historical and cultural pre-conditions motivated the museum community to start re-assessing the accessibility of its institutions?
— The first known accessible exhibitions started to appear in 1913-1914, just before the World War I: they were primarily educational displays for schoolchildren. And from early on the issue of demonstrating the scale of various objects to visually impaired children became an apparent problem.When describing exotic animals: elephants, for example, you can create a small-scale model or you can let children touch the legs or the tail. But finding a way for them to experience the real scale of this animal in all of its enormity is a much harder task.
In 1913 a museum curator called Charlton Deas who worked in Sunderland started to produce special exhibitions for blind children that showed the real scale of objects: for example, by offering them the ability to touch a large stuffed tiger. Later in America they were doing something quite similar at the Museum of Natural History in New York. And that’s when people started thinking about artworks and how they could make them more accessible to the disabled. At the Sunderland Gallery, since it was still the time of the British Empire, they also had some artifacts from different countries — Buddhist statues, pieces from India, artifacts from the past war — and those were also used for the education of children with disabilities. So it’s important that it started as an educational initiative and only later started to affect museums on a wider scale.
— Was it a grassroots movement or a state-funded initiative?
— It was a bottom-up movement; there was no state funding. In Great Britain and in America special schools or, as they called them in those days, asylums were private institutions funded by charities. Originally they were protestant charities and later just general community charities. Entire cities sponsored local asylums. And the same applied to the museums: quite often they were donated by philanthropists. At later stages, the more active proponents started lobbying politicians to actually provide money and regulations for accessibility. But at the start, there were only individual grassroots movements.
The first published research projects on making museum pieces accessible appeared in the 1910s starting with blind children and then moving on to children with all forms of disabilities except for children with learning disabilities, who in those days were considered incapable of education and therefore left out in the cold.
— Until the 1970s children with learning disabilities were excluded from these processes. I think there’s an inherent problem with the term «learning disabilities». People tended to associate intelligence with speed — which is wrong — and therefore they perceived people with learning disabilities as less intelligent.
— And what did the science say at the time?
— Oh, scientifically they were trying to prove it. In the 18th and 19th centuries there was quite a lot of work on this subject. The first asylums were founded by the very same people who used to call people with learning disabilities «idiots» and proposed the first eugenics programmes. They believed that the blind and the deaf had different-shaped brains, which were considered a genetic fault, and therefore they shouldn’t be allowed to reproduce. Greek philosophy, with its idea of the perfect human with an orderly-shaped bodily form serving as a template, was very influential at the time. Disabled people didn’t fit into that image and therefore had to be removed from society.
Of course, asylums were created for various reasons. Some people created asylums because they were blind themselves and wanted to help other blind people. But the dominant view was not inclusivity. And that really didn’t change until the European movement of the mid-19th century: people like Wilhelm Klein in Austria. Klein founded his Vienna Institute in 1935, although he did so because of his extreme Catholic views: he believed that children would become immoral if they weren’t working. And by this morally acceptable work he meant academic work.
That’s actually linked to what the activities of Montessori were about many years later. Wilhelm Klein was also the first person to get blind people to sculpt crucifixes. He thought this would be the kind of moral activity that would allow disabled children to get to heaven. At the time, many people believed that blind and deaf children were less moral because they couldn’t understand the works of God through vision or through hearing. Denis Diderot wrote about this in his Letter on the Blind.
In Britain the ideology was Protestant, so if you were working in industrial production, it was implied that you would understand God better. In France, on the other hand, with its Enlightenment philosophy the focus was on literature and reading; it was a very important part of their educational system. And that is why Braille, even though it wasn’t the first touch language, gained such popularity. Art was introduced much later and at first the focus was on craft and not on aesthetic learning: stuff like basket weaving. Only after the study of tactile perception had advanced were the first attempts to teach deaf and blind children aesthetic art made. For example, they learned to sculpt in order for them to understand their own bodies better.
— Earlier you mentioned that the 1970s were an important decade, why were they such a watershed for disability?
— Well, that’s when it started to change. In the 1960s-1970s there emerged a political movement called the Independent Living Movement. Particularly in California, disabled people who had been put into care homes when they were older were becoming fed up with being pushed around. It was especially painful if they had been able-bodied before that and then when they became disabled they were pushed into an asylum. Their message was «We want to remain in our own houses and be a part of the community». There had been movements in disability politics before that but the current trend is definitely based on this one. In the 1970s education was also becoming more inclusive and by the early 1980s the situation was really starting to change. Even though there had been mainstream schools taking in disabled children before that, that’s when it became a politicized legal issue and laws started to get discussed and passed and changes to the Education Act were made. 1981 was also declared the Year of Disabled Persons by the UN. Only later, in 1995, a Disability Discrimination Act was introduced in the UK, which was then merged into the current Equality Act along with other forms of discrimination such as race, gender, sexual orientation or age.
— Why did it take almost 20 years?
— The political machinations required to change an entire system are always incredibly slow. It wasn’t one of those things where we could just decide: «People are not being treated equally, let’s start closing down unnecessary special schools and move children into mainstream schools». The research took a lot of time. Then there were also two changes of government in between just to complicate issues. While working on one of my books — « Philosophy as Disability and Exclusion»— I found out from one of the former ministers whom I managed to interview that the government wanted the 1981 Education Act to coincide with the Year of Disabled Persons. That means it was mostly a political act: they wanted to show off to the United Nations that they were actually doing something. On a more pragmatic level, it was also a cost cutting exercise, because those were times of economic flux and special schools were expensive to maintain. In the Education Act, they didn’t add any provisions for teacher training. A lot of disabled children remained excluded from mainstream schools because they weren’t taught art or physical education. So in reality mainstream education actually really hurt many of the people who entered it.
— It’s similar to the situation in the 1950s in America when they finally allowed children from black families to go to the same schools as the white population. Then, similarly, they didn’t undertake any particular measures to increase inclusivity.
— It’s a very similar situation with the disabled. Of course, there is evidence that some children flourish in mainstream schools, particularly children with low-level disabilities. In the past, if your child had even a slight disability they would put them in the asylum which often resulted in them becoming even more disabled because of the social conditions of that school. But children with severe impairments were given very little support. In my book « Arts, Culture, and Blindness», I describe two children from a school for the blind. The first student received really good help when she was at a mainstream school, but unfortunately later had to move to a special institution because her sight worsened. She couldn’t study with the sighted students anymore But she maintained lots of sighted friends from that first phase of her education. The second student had a different story. He actually grew up in a special school — he was already a 19 year old man when I interviewed him. At his first mainstream school he was often put at the back of the class and given a completely different exercise from all of his sighted peers. If you did that to a child from an ethnic minority that would’ve been completely illegal in Britain. But because he was a disabled child, that was allowed at that time (1990s). A legalised form of exclusion. As a result, he had ended up being a year behind in his education and so his mother lobbied to get him into a special school. Ironically it was right after the whole shift to mainstream education had happened. But that move wasn’t successful for him. He failed his Art exam and dropped out. That was a result of the trauma received in his first school: there he had developed a fear of drawing that he could never get rid of. But in spite of this, he was very good at sculpture, some of his works were even exhibited.
— It’s amazing that these children actually opened up to you...
— Many of the people that I interviewed actually wanted to talk about their experience. Because the time is finally right. But it wasn’t always like that. When I started researching back in ’93-94 there were a couple of people in their 80s who’d gone to special schools before World War I and they still felt very loyal to them. It was still a rare opportunity to have an actual education if you were disabled in those days, so people really valued that. Nowadays more people want to open up about their experience. If they admit that they can’t draw because they weren’t taught art, it doesn’t mean that they are being disloyal to their education. They are simply stating the facts.
— Let’s talk about design. What does it mean to create an accessible environment, both socially and architecturally? And is universal design even possible?
— There’s a big debate going on at the moment: is universal design an unachievable ideal or is it something we should work towards even though we can’t achieve it in its totality? Universal design is based on the principle that all things should be designed according to the needs of the people who have the most extreme forms of disability and the most extreme forms of exclusion. So instead of installing a ramp, we’ll design the doorstep itself in a way that would allow a disabled person to enter the building without any difficulty. And if a person with the most extreme lack of mobility can enter it, then anyone can. But the problem with universal design is that it does not cover cultural and social aspects. And, unfortunately, that’s a bigger process. I personally believe that to change popular attitudes towards the disabled it’s not enough to simply provide them with access to buildings. I think there are lots of complicated factors that change people’s attitudes. You will not get rid of discrimination by simply putting a ramp up to the door.
We can compare this with our current attitude towards refugees. When the times are good economically we’re much more likely to take in refugees. But in times of economic hardship people become more against it. And I think the same goes for disability rights. When we have the money, we’re quite happy to spend more on buildings to make them accessible. But when times are harder and our own well-being is at stake, we say «I’m not including that in my building. I want to cut costs, who cares about access for everyone?» The first things to be thrown out of the door are the things that make a minority of people better off or more included. Unfortunately, we’re fighting for smaller and smaller parts these days. In education in particular, because it’s all government funded. They need to show that more children are passing exams despite the budget cuts, so they get rid of the weakest. Disabled are the most fundable people, but also the easiest people to take the money away from. After all, they are a minority when it comes to voting, so they won’t change the outcome of the general election.
— Are these the results of neoliberalism? Of things like the «bedroom tax»?
— The «bedroom tax» was not directly aimed at the disabled but I agree: it’s all part of the same trend. Before the 2008 economic crash there was extra money for benefits. But then suddenly times got harder and the money needed to go to banks. And of course, the easiest people to exploit were the poorest and the most needy. Charging extra tax would have been very unpopular. They needed to keep rich investment bankers on their side
In design there’s something similar that I’ve written about in « Arts, Culture, and Blindness»: «symbolic inclusion». In symbolic inclusion you seem to be doing something for disabled people, but not really. People put a ramp up to the door and proclaim: «Now, this building is accessible, we’ve done all we can for people with disabilities. We respect the Equality Act». But it’s just not true. First of all, they are only doing something for people in wheelchairs; second of all, often those ramps don’t even work, because no one tested them. Another example is loop systems. Quite a few places had them installed because they were given money by the government, but then they don’t even turn them on. I can go into a building with a loop system sign on it, but the staff wouldn’t even know how to use it. Once again: symbolic inclusion. People sitting in their holiday villas in France drinking Chardonnay and saying «What should we do for poor people? Ah, yes, we’ll do this, we’ll do that, we’ll do the other...» And then, of course, coming up with these wonderful ideas, but not actually including these disabled people in the design process.
— But what if they are not experts in design?
— Participatory design is already very popular and disabled people should be included on the design teams because they possess invaluable knowledge. I can give you an example of this. Most of the inclusive system technologies are designed by able-bodied people who are trying to imagine what it’s like to be a disabled person. But this has started to change recently — inclusive features are now being built into mainstream technologies. Apple has worked with organizations and with people with disabilities to develop inclusivity standards. And you’ll find in the press that more and more disabled people are using mainstream technologies today, which really helps with social acceptance. One of the worst things about traditional assistive technologies is that they are also the very last forms of exclusion. You take children out of asylum school and put them in a mainstream school — great. But if you’re still providing them with old-fashioned technologies — the same old Perkins Braillers instead of a smart iPad for example — then you are still separating them from their mainstream peers. They will continue to stand out from the crowd. I’ve written a paper recently and it’s going to be published in a book called When Gucci Makes Hearing Aids I’ll Be Deaf. In it I argue that people who wear glasses are not seen as disabled — in fact, it seems quite fashionable: even people with perfect vision wear glasses albeit with straight lenses. All of the major fashion labels produce glasses. But no one is making fashionable hearing aids. There’s still a stigma to buying them.
— But isn’t this a kind of disability aesthetization simply for market expansion?
— Yes, but it also makes things more socially acceptable. There’s a very interesting book by Nora Ellen Groce called « Everyone Here Spoke Sign Language». She did an anthropological study of Martha’s Vineyard — a very famous island in North America. Its population mostly cаme from this village in Kent, England in 1600-1700 and there was congenital deafness in that community. And because there were so many people with this impairment, even those who weren’t deaf used to speak sign language. It became the mainstream mode of communication of that community. It became socially acceptable to be either deaf or hearing — neither was seen as unusual. Everyone could speak as well, but maintained access to both languages.
— And what about mobile phones, social media — can they help people with disabilities?
— Modern technologies are becoming more and more accessible so many disabled people are using those. Many of them are on social media, which allows to access information very easily. In the old days if you wanted to go to a museum, you had to call ahead, arrange for a support person to come with you, pick a time slot. Now, because of web technologies all this information is on a website and people don’t need to plan so much before going to a museum. I’m currently working on a European Union project making applications more accessible. We’re specifically looking at apps providing information for disabled people about museums and their exhibitions. And not just plain facts, but real background information that would make it more accessible to those individuals. Customizing the technology is also very important. For example being able to choose personal avatars that would sign for you. So say if you’re a Muslim woman and you specifically want to have a female signer and not a male one, you could choose between those options.
Text: Anna Ilchenko
Translation: Alexandra Tumarkina