“Disabled People Exist and Are Part of Society”: Interview With Ivana, An Autism Rights Activist
Ivana Recmanová is a Czech activist for the rights of women and people with disabilities, especially autism. She is 29 and herself autistic, which she doesn’t keep secret: “It is better to make my diagnosis uninteresting. Everyone knows it, so what’s the big deal?”, she asks with a smile. Brno Daily spoke to Ivana as a part of our series for autism acceptance month. Photo credit: Ivana Recmanová.
After I tentatively message Adventor, one of the associations Ivana is part of, saying I am writing a series about autism and asking if I could talk to someone to learn more about autism advocacy in the Czech Republic, I receive an enthusiastic email from her just hours later, in which she offers several options for us to meet. After a short discussion, we agree to meet in the evening in Kladno, where she lives with her boyfriend.
She is waiting for me on the station platform, and to recognize her I’m told that she is carrying a bag in the shape of a bird. On the train I wonder what it might look like, but in fact she is the one who spots me first, thanks to my long red dress and my air of a lost foreigner. She has the round, soft face of a doll or an 18th century painting and begins by telling me about her work, which she is visibly passionate about. She studied languages and linguistics and now works as a freelance translator, first from Spanish to Czech, but also from the world of autistic people to that of allistics (non-autistic people). Indeed, she leads workshops that allow neurotypical people to learn how to communicate with autistic people. Her clients are teachers from schools or universities, but also companies looking to become more inclusive. “I introduce it by saying it’s like learning a new language with a native speaker, since I’m autistic myself,” she explains.
Diagnoses and prejudices
We sit on the terrace, which this shy start of spring finally allows, and order some rosé. She speaks in a lively and assured tone, looks away when she is thinking or searching for words, which she chooses with precision, and then from time to time meets my gaze with brown eyes full of sparkling intelligence. She was born in Kladno and grew up there. She went to normal school, where she was a good student and did not encounter any particular academic difficulties. However, she was often bullied at school, without being able to understand where it came from, or why she was different from other children. At the time autism, which is a lifelong neurodevelopmental condition, was a very little known diagnosis in the Czech Republic. Finally, when she turned 17, a member of her family made the connection between Ivana’s peculiarities and those of the stepson of one of her colleagues, who had just been diagnosed with autism. The family therefore decided to finance the diagnostic procedure for her, in order to better understand her.
The hunch was right, and Ivana was diagnosed with autism. “At first, my family said to not tell anyone.” Was the stigma worse than now in the 2000s? At that time in Czech Republic, “hardly anybody knew about autism.” Now, people are more informed, but Ivana describes it as a double-edged sword. Indeed, the public mainly learn about autism through media representations, which are not always accurate, and therefore think about the condition in a very stereotypical way.
Become an adult, live elsewhere
“As a child, I liked learning languages, I had very good grades in languages. I decided to learn Spanish because I wanted to speak it fluently.” She started university in 2011 and chose to study in London because she found a very flexible degree there which allowed her to study Spanish, but also Arabic and Romanian. After this, she moved to Olomouc to do a master’s degree in Linguistics. “I then chose to study linguistics in order to avoid literature. We studied Spanish and South American literature and I had difficulties relating to it. But in my final year we studied decolonisation, and this I could relate to. I suddenly felt this is something I have been feeling and this is something that represents me to a certain extent. But I had already decided to study linguistics. I can imagine that I could study literature now, but I would like to focus more on things that are close to me. Linguistics is more about exact science, but literature is more about, I don’t know… perception.”
She also explains her decision to study abroad by the fact she wanted to “become an adult, live elsewhere.” At that time there was almost zero autistic activism in the Czech Republic. “When I went to the UK, there were many autistic people who were very active, for example within university societies. There were many visible autistic people and they fought for their rights, so it really inspired me.”
“Then I came back to the Czech Republic and I realised there was something to be changed, and if I didn’t start doing something about this, it might never change.” In 2018, she applied to be a member of an advisory group for the Czech public defender of rights, and was selected. She stayed in this voluntary position for two years. “We were bringing some cases of discrimination, it was about disabled people’s rights.” After this, she joined A-Komunita and Adventor, two organisations which defend autistic people’s rights. The two organisations collaborate and have some members in common, but are independent from each other. “Adventor is an NGO and A-Komunita is a self-advocacy team, it is made of volunteers.” Adventor is also part of the European Council of Autistic People (EUCAP), an organisation founded in October 2019 and composed of 21 member organisations from 15 countries. EUCAP aims to promote the welfare of autistic people in Europe through participation in public discourse.
“We have a meeting usually once a month. We discuss things, what we are planning to do, what is going on and how we will respond to that.” And what do they focus on, as a community? “There is an advisory group to the government made up of people from various organisations. We also have someone from us going there. There is a special committee on autism advising the government in the Czech Republic. We also prepare some campaigns, and there is a course, a workshop on self-advocacy run by ATYP magazine. Some people from A-Komunita or from Adventor will give some lectures for the course.”
Priority goals to achieve the rights of autistic people
“Well. Actually there are so many things,” Ivana confesses. “I think the problem is that autistic people don’t have the same rights as allistic people [BD: a neologism used by the autistic community to refer to non-autistic people],” she explains. “For example, from April 2011, autistic people cannot drive motor vehicles in the Czech Republic. We have been trying to lobby for a change, and before COVID the Ministry of Health said they would do something about it.” But unfortunately when the pandemic came, it wasn’t quite the priority anymore. On top of that, “the Ministers of Health have been changing often so… it’s really hard now,” says Ivana regretfully.
The next problem she explains is with education. Inclusion and equity in mainstream schools seem to be poorly respected. “The thing is that, by law, autistic people as well as other disabled people are entitled to mainstream education. But there is a lot of push back from some politicians and also some parents and schools as well.” Parents of disabled children? “Actually, parents of other children. They don’t want their non-disabled children to be educated alongside disabled children. The problem is also that some teachers behave in an ableist, biased, way,” she says. Finally, the schools are often poorly equipped and not accessible to children with disabilities. As a result, children with disabilities are placed in special classes, where the curriculum is reduced and the diploma obtained is not the same as that of the mainstream classes.
Autistic people tend to die much younger than the average population
Access to health care is also an issue, and autistic people tend to die much younger than the average population. Ivana also highlights the problem of insufficient access to autism diagnoses, “because there are a lot of, let’s say undiagnosed people in the Czech Republic.” Thanks to a new regulation, there is now screening of children who are 18 months old. “But the problem is that there are so many undiagnosed autistic adults and there is no free screening for them. When you want to get a diagnosis as an adult, just to be checked if you have autism, there are long periods of waiting. Some people have to wait like two years before they get their diagnosis. Another problem with the diagnosis is that it can cost a lot. For some families it is not accessible.” Indeed, it is not covered by health insurance in all cases, and public institutions who do it for free, such as hospitals, often have a very long waiting list.
“And then there is also a problem with employment. Obviously, there is discrimination on the labour market. It is a problem even to find some decent job advice. When you go to an organisation… there was one woman, she studied computing at university and they employed her in a book depository or something like that… something completely unrelated and something for which you don’t need a degree or even a high school exam,” says Ivana, irritated. “Finally she left their services and she found a job on her own, something with higher standing and something for which she was qualified. So it shows how problematic the job advice available for autistic people is. There are people who don’t understand the specific needs of autistic people, and people who think we can only do stereotypical jobs.”
“So, I have been working in a few jobs. As I said, I lived in Prague, I had a part-time job at a newspaper.” Then, some friends, or friends of friends, started coming to her to ask her: “You studied in the UK, you speak very good English, could you translate something for me?” She realised that people were approaching her, “without advertisements or anything, and they asked me to do something for them. So I started freelancing alongside my part-time job and last year I decided to leave the part time job.”
She therefore now works as a translator, and also organises workshops and gives lectures about autism. “I usually teach about communication, so I usually say first that communication doesn’t have to be verbal or even spoken. Because, you know, some people prefer written communication or some people don’t write at all, but it doesn’t mean that they don’t communicate. Many times, I keep hearing that autistic children don’t communicate, but in fact they do, they just don’t say words. So that’s what I say and I also try to encourage people to be open to more methods of communication. I also teach about language, because some people prefer the identity first, autistic people, and some people prefer people-first language.” She explains the importance of the choice of vocabulary by the fact that one can hear many awkward, often negative, formulations to describe people with autism. “Many people, including myself, don’t like it because we don’t see ourselves as disordered or being out of order!” When, during these workshops, someone says “we are for diversity, we are non-discriminatory employer,” Ivana tells them: “Show, don’t just tell! These are the things I try to communicate, but it really depends on each organisation.”
Media representations and autistic people’s voices
Both in her work and when she expresses herself as an activist, Ivana realizes the weight of prejudice in society. “I think we, as autistic people, don’t get enough voice in the media. We are hardly ever asked about issues that affect us. It is mostly parents or parents’ organisations.”
A year ago, a documentary film was made about a specialised school. The film-makers infiltrated a special school and there was a lot of controversy. “People were saying that we can’t film children like that, you are going to expose them and so on… After this, Czech Television decided to have a panel discussion about it. There was not a single autistic person! There were just representatives from, you know, parents, organisations, and so on…Where were the autistic people? It is a discussion about autistic people, but there were no living autistic people on the panel! We think it should be us telling our stories.”
Media representation can affect people, both in the way they represent themselves and represent others. Ivana experienced it in 2019, when she was interviewed on a Youtube channel about autism. “I got weird comments from people: You don’t look autistic! And I am like: well what do I tell you? Because people expect me to be like a non-speaking person who is absorbed in her own world… I don’t have anything against non-speaking people, I just think it is wrong to assume that all autistic people look the same,” she explains. “The problem is that there is poor media representation, because it is mostly our parents or relatives who tell our stories and it is mostly about: I have a disabled child, it is a pity, it is a catastrophe!”
Also, “Last year a book written by one of the autistic people here was published, but there is no review by any respected journal or magazine. And at the same time a mother of an autistic child published a book and she got a lot of endorsement from influencers, she was invited to talk… It is very problematic because she got all the attention,” says Ivana. “For 2 April, there was something about Czech celebrities who have autistic children. Why don’t you write about famous autistic people? Why do you always have to talk about mothers or fathers?”
“They don’t treat me as an equal partner”
“I also sometimes feel, when I communicate with people and they know I am autistic, they treat me in a very strange way. For example, if I disagree with them, they assume I don’t understand because I am autistic. They don’t treat me as an equal partner. If they didn’t know I was autistic, they would probably, even if they didn’t agree with me, listen to me and think about it.”
“I decided to come out publicly because, you know, as a child, when I was at school, at that time I didn’t have a diagnosis but people knew I was different, and I was bullied, etcetera!” Shortly after university, Ivana applied for a job and went for an interview. Everything was ok and they hired her. But, a short time after, one of her coworkers said “you know, you look autistic.” “You know I actually am autistic,” she replied. “And she said it was so visible. I realised that even if I don’t tell anyone, people can still see it in me. So I thought, it doesn’t make a difference if I tell people or not, they will know. So maybe I could just tell them anyway.”
“I am not going to hide it. If someone says that I am autistic I will say: yes I am, what’s your problem? So no-one can use it against me. I don’t blame people who decide to hide it because I understand that discrimination does exist, but I also think it is an unfortunate situation.”
“If you see someone being discriminated against, you should stand up for them”
Ivana believes that, to reduce discrimination and change mentalities, we should start by educating children on the issue of disability. “All children should be told about disability: there should be disabled characters in children’s books and also we should say more about famous disabled people. Being disabled doesn’t mean that you have to be put into an institution. You can also be successful.”
“Disabled people exist and are part of society,” says Ivana. She thinks that the message we should teach the new generation is that “you are not a bad person because you have privileges. But if you see someone being discriminated against, you should stand up for them.”