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- Face-to-face in the same way: how students with severe disabilities study at universities
Face-to-face in the same way: how students with severe disabilities study at universities
Russian Students' Day is celebrated on January 25 by students with disabilities. Back in 2024, there were almost 40,000 people — the availability of higher education for people with disabilities has increased significantly in recent years, but problems still remain: the environment is not always ready for real inclusion. About what students with severe disabilities have to face who dream of getting a full—time higher education is in the Izvestia article.
Why is full-time education important
According to the Ministry of Education and Science, 39,441 people with disabilities studied at universities in 2024. This is 56% more than in 2019. Moreover, 11.5 thousand of them arrived in 2024.
One of the problems is that not all of them can study full-time. But Ekaterina Pankova, director of the House with a Lighthouse Hospice for Young Adults, emphasizes that face—to-face visits are not only and not so much about studying.
— Full—time education is a social life and a step into adulthood. It is important for us that the children have a reality outside the family, outside the constant accompaniment of their parents. The institute is about communication, participation in group life, student activities, and friends with interests. This is the development of social skills and independence. Isolation is one of the most dangerous things for families with seriously ill children and young adults," she told Izvestia.
Ekaterina Pankova emphasized that the patients of the House with a Lighthouse do not want to be only objects of care, it is important for them to become full-fledged members of communities. Full-time higher education provides this opportunity.
— Although many children studied remotely at school and initially consider only such formats, and some do not see the point in full—time education, - she noted. — But now the life expectancy of palliative patients is increasing, and our patients have long-term plans.
Senior Coordinator of the Duchenne Muscular Dystrophy Foundation (the disease is associated with progressive muscle weakness. — Izvestia) Elena Gamina, the "Gordey" of the 18+ cohort, notes that for now, full-time education is "almost impossible" for a guy with DMD at the age of 18: due to his physical condition, he constantly has to solve logistical difficulties when traveling.
— Such a student always needs the help of an accompanying person, but there are still problems with this. As a result, full—time education is almost always the heroism of parents," she told Izvestia.
"I don't want to stay at home"
Grisha Lukash is a second—year student at the Moscow Academy of Finance and Law (MFUA). He is a patient of the Hospice for Young adults "House with a lighthouse" and he has spinal muscular atrophy of the second type. Grisha uses a wheelchair, and he always needs an escort, even for basic household items. However, he still studies economics full-time: he comes to the institute every day, sits in pairs and tries to lead an active social life at the university.
However, Grisha dreamed of another specialty: pedagogy or psychology. He even enrolled in one of the universities in the desired direction, but in the end he had to choose, based on the fact that MFUA turned out to be the only university within walking distance, and even with a modern building with the ability to move around it in a wheelchair.
Even in this situation, the most difficult thing in Grisha's studies is to get to her. Any road improvement turns into an obstacle course: sometimes the mother, who acts as Grisha's personal assistant, has to literally carry both the stroller and her son. Inside the university, it is already simpler: the building is equipped, and the administration has met them halfway — comfortable desks and a couch have been installed for them.
However, the main problem remains unresolved: Grisha constantly needs an assistant. The university does not provide it, sometimes the "House with a lighthouse" helps out, but most often this role is performed by the mother. Grisha is sometimes forced to retake exams not because he is not ready, but because he simply could not get to the university.
"The teachers treat me like an ordinary student, they work like everyone else," Grisha tells Izvestia. — There is no such thing that since I have a disability, then I should be treated with pity. And that's great. But I don't always have contact with students: not everyone likes that I study with them.
Nevertheless, Grisha is actively involved in the life of the university. He is a winner and prize-winner of regional and federal programs and competitions, and is developing the Helping Hand project to create a system of assistant support for students with severe disabilities. He directs the radio sector of his building, prepares new broadcasts for release every week, and selects characters to participate in the recording. Participates in the organization of cultural events.
Full-time education is essential for him.
— It helps to gain communication skills, improves you and your stress tolerance, — says Grisha. — This is communication: new people, new contacts, friends and acquaintances. And I'm very sociable: I like to organize events and benefit society, despite my condition. I don't want to stay at home. No matter what, I'm rolling forward.
Not always an accessible environment
Almost all people with severe disabilities are forced to choose educational institutions as close to home as possible: it is physically difficult to travel far, in addition, there is no fully accessible environment in the subway and other public transport, and trips by social and palliative taxi are limited. And even in universities with an accessible environment, it often turns out to be insufficient, Ekaterina Pankova notes.
Elena Gamina says that although the university should provide free technical training tools, they are not available for people with severe disabilities: in particular, there are no eye trackers and special joysticks for those who find it difficult to work with a mouse and keyboard. This is an important obstacle for young people with Duchenne myodystrophy.
Vladimir Kazankin, Advisor to the Rector's Office for work with public organizations of the disabled and inclusive student communities of the A.I. Herzen Russian State Pedagogical University, notes that inclusive education has been developing in the country for the 13th year, but there are objective reasons why it is not possible to quickly eliminate all existing obstacles. For example, historical university buildings can be difficult to equip in accordance with modern requirements. At the same time, almost no complaints were heard from people with visual impairment in the All-Russian Society for the Blind: there are only issues with guide dogs, which are not always allowed to live in dormitories.
However, the main problem is precisely the lack of people: neither the state nor universities provide personal escorts, there are not enough non-profit organizations, and it is very expensive to hire a personal assistant. In the end, everything depends on the family, says Ekaterina Pankova. Or the functions of tutors are often shifted to students of the same educational institution, which reduces the quality of care, says Elena Gamina.
Russian Russian sign language teacher Elena Soloveitchik, director of the Educational and Methodological Center of the All-Russian Society of the Deaf, noted that the students are faced with a lack of qualified and certified translators into Russian sign language and the inaccessibility of the proposed translation.
"Education at any level, from preschool to higher education, is one of the most problematic areas for the deaf and hard of hearing community," she told Izvestia. — Most deaf applicants choose universities where there are either "adapted" programs or sign language translation. These are MGPU, RGSAI, Bauman Moscow State Technical University, KFU, NSTU.
Among all the problems of higher education for people with hearing impairments, Elena Soloveitchik puts in the first place the failure to comply with the principle of "nothing for us without us": inclusive programs for the deaf in universities are drawn up without the participation of the deaf.
"Difficulties are becoming surmountable"
Elizaveta Belyaeva is a ward of the SMA Family Foundation. Like Grisha Lukash, she has spinal muscular atrophy and uses a wheelchair. Last year, she graduated from Perm State National Research University with a degree in Philology.
Since the eighth grade, she knew that she would choose a profession related to texts, but initially she was going to choose a practical option: a pedagogical university with a convenient location.
— But we were sitting in line to apply to this university, and I realized that it was physically uncomfortable for me to be in this place. And when we submitted the documents. I just started crying. I still can't explain my behavior, but I picked up my documents on the same day and decided to enroll in PSNIU," Elizaveta Belyaeva said.
Now the decision seems to be the right one for her: classical philological education has given her a wider choice for her future profession. Now she works as a PR manager. And the PSNIU itself turned out to be a good option for people with disabilities in terms of building facilities.
She felt no formal or condescending attitude from either the administration or the faculty, and studied on equal terms with other students. She only took notes on her phone because it was difficult to write with a pen. In the third year, she became the head of the group.
Her classmates became an important support for Elizabeth: they helped with household chores, went to the buffet with her, and helped her move between classrooms.
— The only thing that caused discomfort was the fire evacuation, when all the elevators were turned off and my classmates had to carry me in their arms. It was always a lot of stress," says Elizabeth. — At such moments, the lack of technical solutions is especially acute: emergency elevators or safe descents for people with disabilities.
According to her, it was difficult to study, but it was as difficult as it was for everyone else.
— And if you understand why you need education, the difficulties become surmountable, — the girl is sure.
A place where people believed
Not everyone is lucky enough to find their alma mater quickly. Anastasia Lyzhova, 21, another ward of the SMA Family Foundation, is currently a third-year student at the Arzamas Commercial Technical College (ACTT). She didn't get there right away.
She graduated from high school in 2021 with a red certificate.
— For me, it was not just a document of education, but a confirmation that I had done well. Studying has always been given to me through effort: sleepless nights, constant concentration, fear of making mistakes and the desire not to let myself or my family down," Anastasia admits.
She lives in a small town, Pervomaisk, Nizhny Novgorod region, and therefore chose only the option of distance learning. There were two options: college in Nizhny Novgorod and "Synergy".
— There was a phrase in the admissions committee at Nizhny Novgorod College: "We know how disabled people get red certificates." These words devalued my entire journey, questioned my right to be an applicant on equal terms," says Anastasia Lyzhova.
The girl refused to attend college in Nizhny Novgorod. She studied at Synergy for a year and a half, but became disillusioned at the university itself, where studying seemed formal to her. And in 2023, at the Beauty of Inclusion competition, she met the head of the ACTT Center for Inclusive Education. After hearing her story, she invited Anastasia to this college.
— Now I have been studying here for the third year and I can say that for the first time I feel like I belong here. Inclusion is not about formal programs and reports. It's an attitude. This is trust. It's the ability to see a person as a person, not as a set of limitations. I was lucky to find a place where people believed in me," Anastasia Lyzhova said.
Can universities reject students with disabilities
Elena Gamina notes that for universities, working with students with disabilities is a mandatory licensing requirement. The attitude towards them is regulated by the State and is based on the principles of priority access to education.
— In practice, this is a kind of lottery, depending on many factors, — said the interlocutor of Izvestia. — In some universities, there are still soft attempts in the admissions committees to "warn" against difficulties so that a young person with a disability would give up the idea of applying himself. Universities are afraid of inspections, and the administration may treat such a student as a "risk factor."
She emphasizes that there is practically no such attitude in large universities in big cities. The focus is not on the diagnosis, but on the necessary tools for learning. However, in small regional universities, disability can still be perceived as "exotic", and more often than not as a problem.
Elena Kuzmina, Social Affairs lawyer at the SMA Family Foundation, noted that a lot depends on the willingness of the university administration to help. And she gives her story as an example — she graduated from Vladimir State University back in the early 2000s. At that time, there was no accessible environment there at all, and so that a special student would not have to go to different rooms between floors, the dean's office assigned one classroom to his group, in which all couples passed. But my mother and the students helped me lift the wheelchair up the stairs.
However, it is not enough to enroll in a university. According to the Ministry of Education and Science, about half of students with disabilities do not complete their studies. Elena Gamina says that the problem may be a systemic gap between schools and universities: people with disabilities are often home-schooled at school, and they simply lack the skills to study independently.
Nizhnekamsk solved the problem by creating a specialized educational institution for children with disabilities: This is the Nadezhda Boarding School, where inclusive practices are being developed thanks to grants from the Formula of Good Deeds social investment program.
Liana Saifullina, a graduate of the school, a girl with cerebral palsy, is currently a first-year clinical psychologist at the Institute of Psychology and Education of Kazan Federal University. She is sure that the path to university would have been impossible for her without studying at Nadezhda. At first, Liana and I were involved in rehabilitation there, then she went to kindergarten and school. The girl says that teachers there instill self-confidence in a person, they see potential in students, not limitations. And if they understand that a person is capable of more, they give them the opportunity to delve into areas of interest.
"I realized that physical limitations are a given that cannot be changed, and education is my area of responsibility where I can invest,— says Liana.
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