Spartan: Does a man have to be healthy
We recognize sexism, ageism or racism quite easily, but with discrimination against people with disabilities is more complicated. We hardly notice that our cultural attitudes are designed for the world of absolutely healthy people, and even people who respect other people's rights in other fields find it strange to deviate from this rule.
This type of discrimination is called eimelme - the word comes from "able" or "able-bodied," that is, a person without a disability. Some activists prefer the term “dissimine” to emphasize which particular group is being defeated in rights, but it has not yet become widely spread. It is important that the Eyme affects a very heterogeneous mass of people: this includes people with disabilities (for example, by hearing or by sight or moving in a wheelchair), and people with disabilities, and many other people who do not fit into the "norm". The concept of aydism appeared only in the eighties, with the development of the movement for the rights of people with disabilities - although discrimination, of course, existed before. We decided to find out how attitudes towards people with disabilities changed and how euclime appears today.
Then and now
For centuries, conventional physical form was considered a guarantee of "normality" - from ancient Greece, where there was a very clear standard of beauty (they are still guided by the images of ancient statues) to modernity. At the beginning of the nineteenth century, for example, "human zoos" appeared - one of the most famous stories associated with Saarti Bartman, an African who was brought to England to participate in the show: the audience was fascinated by her appearance, which was not so European. In Europe and America of the nineteenth century, freak shows were popular, where the audience was shown Siamese twins, women with hirsutism, people with dwarfism and not only.
People with disabilities and disabilities have long been victims of segregation. For example, already in the twentieth century — in 1913 — an act of mental inferiority was introduced in the UK, because of which tens of thousands of people found themselves in psychiatric clinics and special institutions, since it was believed that they could not take care of themselves or live with relatives. In Western countries, until the seventies of the last century, such an attitude was the norm: even the famous playwright Arthur Miller sent his son with Down syndrome to a special clinic and for nearly forty years refused to communicate with him and publicly talk about him. Inclusive education up to the same seventies was completely unthinkable.
Research and approaches to the treatment of people with disabilities and disabilities also remained eiblistic for a long time. For example, at the beginning of the forties, the theory of the “cold mother” was very popular: it was believed that the appearance of autism in children was due to a lack of attention and love from the parents - the mother in the first place. Later, the theory was declared untenable, but cruel and ineffective methods are still used with regard to people with disabilities. For example, in Russia, a holding therapy is used in working with people with autism - forcing a child to remain until he wants to communicate with his parents. Although electric shocks are no longer applied to people with autism, some continue to use punishments in therapy.
Many treat disability as the only trait of a person, forgetting that although feature is an important part of identity, personality is always more complicated and multi-faceted.
Today, direct discrimination has become less - although the implementation of the principles of inclusiveness or the notorious barrier-free environment is far away. People with disabilities and developmental features continue to play in the cinema as ordinary actors (studios often explain this by saying that the plot is about a "miraculous healing" or a hero they want to show in the "before" state). People with disabilities continue to feel isolated - even in countries where inclusiveness and an accessible environment are much better than in Russia. “In my favorite bar on my street, the convenient entrance is even further down the street - and a steep ramp leads to the door from which you need to go deep into the building,” says British Lutisha Doucette. “There is no sign, no surveillance cameras, and once I I saw a bloody towel on the fire alarm device. "
Many of us, without knowing it themselves, become sources of domestic aydism: they rush to help a person with a disability without asking him (it is understood that he needs help by default, although this is not the case), leaning on a wheelchair or not looking into the eyes of an interlocutor in a wheelchair . Many treat disability as the only trait of a person, forgetting that, although a feature is an important part of identity, a person is more complex and multifaceted - and a person has the right to choose how to identify himself. Others use eiblistic vocabulary, try to take advantage of benefits designed for people with disabilities (for example, special parking lots), believe that a disability should always be visible externally or that people with a disability should be ready at any moment to talk about their condition and respond to any personal questions - although it is not.
By birth
Until recently, the question of the transfer of disability or developmental characteristics was inherited radically. The famous case of US Supreme Court Buck v. Bell in 1927, for example, made it possible to forcibly sterilize "inferior" people "in order to protect the health of the nation." After sentencing Carrie Buck to sterilization, the judge declared: “It would be better for the whole world if, instead of waiting for the execution of degenerate offspring for a crime, or that they die of starvation due to their own mental retardation, society will be prevented by those who obviously not suitable for procreation. " Forced sterilization in the United States was carried out until the 1970s. This is not the only such program in the world - the most famous and large-scale was held in Nazi Germany since 1934, about 300-400 thousand people became its victims. Several thousand (mostly women) died because of the operation.
In today's world, forced sterilization is an absolutely unacceptable measure: it is unlikely that anyone would ever think to prohibit a woman who has a higher risk of breast cancer due to heredity from giving birth to a child - and the situation with disability is the same. But the possibility of genetic transmission of developmental features and diseases still poses new questions for us. Early diagnosis, for example, allows a pregnant woman or couple to decide whether they are ready to raise a child with developmental disabilities or a serious illness, while editing the genome and selecting embryos - to prevent the transmission of hereditary diseases and get a healthy fetus.
But already in the very philosophy of these methods, many see also the danger of eimelma. “Dr. Lejen has devoted himself to finding new ways to improve the lives of those born with extra chromosome. He did not think that his discoveries would help create tests that would prevent our birth,” said American Karen Gaffney, an activist with Down Syndrome, in a speech at the TED conference. . In the UK, 90% of pregnant women, if the fetus is diagnosed with a high probability of Down syndrome, have an abortion - and Iceland may become the first country where children with Down syndrome will not be born in principle. It is easy to guess what might happen next: will the society take care of the infrastructure, its financing and training of specialists, if there are only such children?
But the question whether people with disabilities or developmental characteristics would choose such a life themselves or not, even activists cannot give an unequivocal answer.
This question has no unambiguous solution: radical methods do not work in both directions. In some US states, they periodically try to ban abortions if the fetus is found to have a high likelihood of Down Syndrome - but these measures provoke protests even among activists advocating a change in attitudes towards disability and developmental characteristics. Despite the proliferation attitudes of traditionalists, modern society has a consensus about pregnancy: how to deal with it remains the choice of every single woman, for someone abortion becomes forced or the most humane action. It is strange to expect that all women will resolve the issue in the same way - they will demand a total ban on abortions or will definitely want to end the pregnancy.
Most are also convinced that the life of people with disabilities or developmental characteristics will necessarily be hard and painful - and those who decide to give birth to such a child obviously condemn it to suffering and inferior life (for example, the scientist Richard Dawkins). The eiblist approach can even be traced in discussions about vaccinations and autism: many parents prefer to put children at risk for illness that is easily prevented by vaccination, or even death, than to have a child with disabilities. In such a system, the coordinates of people who are ready to raise a child — own or foster — with features are considered at least strange.
In fact, the quality of life of people with the same diagnosis can be very different, and it depends not only on the characteristics of a particular person, but also on the inclusiveness of the environment. Pravdpa, to the question whether people with disabilities or developmental characteristics would choose such a life themselves or not, even activists themselves cannot give an unequivocal answer. Ben Mattlin, the author of the essay "A Disabled Life Is a Life Worth Living", was diagnosed with spinal muscular atrophy as a child: according to him, until recently, half of the children with this diagnosis could not live to two years - they could not stand the heart and lungs . He never walked in his life and did not get up on his own. “For people like me, the opportunity to just calmly experience what is happening is a huge victory,” he writes. “But for our life to be suddenly interrupted, a severe enough cold. If our lungs are full of phlegm, we will not have enough muscle strength to cough up it.” Mattlin says that his life is difficult - but he tries to use the opportunities that have fallen to him to the maximum. At the same time, he understands that not everyone chooses such a path, and recalls a fourteen-year-old American woman with spinal muscular atrophy Jeric Bohlen: she refused to artificially maintain vital functions - according to journalists, she was reassured by the thought of the afterlife, where she no longer had to experience constant pain and she can move freely.
Isolation and Identity
People with disabilities and disabilities are taken as if they need to be “fixed” - otherwise they cannot be full-fledged members of society. Not surprisingly, isolation often becomes the result. Even in the nineties, people moving with a stroller, it was difficult to leave the house: the sidewalks, and public transport were not adapted to traffic. In Russia it is still difficult to travel around the city in a wheelchair - as a rule, it is comfortable to do it only by car.
For people with hearing disabilities, many opportunities have long been closed altogether - largely due to the lack of sign language interpreters. Training people with hearing disabilities is controversial now. There are two popular approaches in the world: the first is learning sign language, the second is teaching children to speak and lip-reading. The second method is used less frequently: although it helps people with disabilities to “fit” into society and makes their feature less visible from the outside, many people with disabilities feel lonely and isolated when they try to communicate with others in ways that are common to them. In addition, many advocate for sign language also because it helps to develop the subculture of people with hearing disabilities - that is, it turns out to be an important part of their identity.
Eyme is fraught with at least the fact that it postulates and reinforces "normality", although there is no single world view.
Not all people with disabilities consider even technologies that help “correct” or “edit” a disability to be an absolute blessing, seeing this as eiblistic motives. For example, in the late eighties, many people with hearing disabilities were negatively aware of cochlear implants: in their opinion, new technologies not only helped people with disabilities make their lives easier, but also took away some of their identity and changed the idea of what is acceptable and “normal” .
Not less difficult questions raise the use of Braille, developed in the nineteenth century in order to give people with visual disabilities the opportunity to read written texts. Now in advanced economies, instead of the font, they use audio recordings and services that sound the written text: books in Braille are expensive and huge - the Harry Potter series, for example, takes fifty-six volumes. At the same time, many specialists are sure that people with visual disabilities who have not studied Braille, even having received education, often remain illiterate in the traditional sense: it may be more difficult for them to imagine how the text is divided into paragraphs, they are confused in spelling. By the way, the ability to perceive information in writing is considered by many to be synonymous with education - although, for example, in Russia, the issue of universal literacy was mainly solved by the Soviet authorities.
It makes you think about how our culture is adjusted to the idea of "normality". Eyme is fraught with at least the fact that it postulates and reinforces this “normality”, although there is no single world view. It is rather difficult to find a fair solution if you choose between radical poles of prohibitions. But instead of trying to “fix” a person, at least it would be good to correct the environment - so that it would suit different people.
Photo: jojjik - stock.adobe.com, Ruslan Borodin - stock.adobe.com, steamroller - stock.adobe.com
