Author: Denis Bartosh (Information Resources Specialist. Information systems and programming)
edited by T.V. Usov and S. Kurlenkova
Why I decided to write this article.
My name is Denis Bartosh, I am 26 years old and I have cerebral palsy. I can't speakverbally and I can't control my hands.
Many children in their your age, as was the case with myself, with speech and motor disabilities, such as Cerebral Palsy, and learning disabilities, such as Dyslexia, Dysgraphia, and Dyscalculia, are often considered inattentive and absent-minded, assumed to be stupid and unable to think.
It's unfair because it's completely wrong. Many children whose speech is impaired but have their intelligence intact, find it difficult to perceive information due toneurobiological characteristics. (Perhaps in other countries, not only in Russia, dyslexia is confused with intellectual disability. What a nightmare! Even now,in the 2020s!!!!).
I'll tell you a little bit about myself.
Due to the paralysis of my motor system, which happened when I was very young, I could not master speech like all children. My brain has adapted, but it works differently than that of people without such disorders. It is difficult for me to matchsome letters and sounds, so when I mastered the technique of reading and writing, it was much harder for me to understand how words are formed from sounds. For communication, I use the gaze control system using eyetracker to type on my computer. Reading is still a slow and difficult process for me, sometimes it is very difficult to extract the necessary information from texts.
An interesting thing is this brain! It works strangely somehow.
Some functions of my brain do not work like everyone else's. It is difficult for me to perceive numerical information by ear, such as data in numbers, I perceive it more effectively when I see it. I write with a lot of mistakes, I slowly find the right words, although I have learned how to convertmessages into audio. I need time to answer people's questions in messengers. A couple of friends helped me edit this text, things like spelling and syntax, to make it more understandable to the general audience. But at the same time, I don’t lag behind in development, my intelligence is absolutely intact. This is what is called a reading and writing / learning? disorder amongpeople with speech and motor disabilities. My personal traits also matter. It is difficult for me to read atext with my eyes. It is much easier and more effective for me to perceive a textby ear. My auditory analyzerworks best.
How I passed a disability evaluation test
In 2016, one "smart" psychiatrist said that I needed to take an IQ test, so that she would decide whether I could express my thoughts and intentionsor not, whether I was thinking straight. And this was decisive in whether I would berecognized as capable.
It was a trap. I could not complete the test because it is difficult for me to read and understand books myself, especially with new knowledge and topics, and my eyesight is very weak. But if someone reads the text to me or tells me the topic, then I will understand everything much faster and better. It is easier for me to perceive atext by ear. But the personwho conducted examination did not allow someone to just read the test assignments to me so that I could quickly choose an answer. I tried it 3 times, well, I was nervous too. Due to involuntary hyperkinetic movements that my body does, the lines jumped in front of my eyes, in short, I could not answer to her questions. But the worst thing wasthat she didn't even try to understand me, to figure out what the problem was.
The expert made hasty conclusions and told my mother and me that I was “mentally retarded”, that is, intellectually disabled! She wasn't convinced by the fact thatI did well at school. I wanted to scream, but I couldn't, because I thought it wasn’t polite on my side. She, this expert, of course, is completely unqualified as a specialist, and, let’s be honest, not very good as a person. After all, she has the right to decide what I'm capable of, and she could have ruined my life simply because she didn't want to delve deeper into mysituation, to understand why this guy couldn’tanswer.
It is important to distinguish between “intellectual disability” (still called “mental retardation” in Russia) characterized by IQ < 70 and difficulties in independent maintenance of daily needs (see Clinical Characteristics of Intellectual Disabilities), and “learning difficulties”. Dyslexia refers to “learning difficulties” and does not affect intelligence. In addition, it seems to me that there are mistakes when a child's IQ is measured and theyarediagnosedas intellectual disabled,because they simply cannot read the assignment due to dyslexia.These stupid tests themselves are aimed at people who do not have dyslexia.
That time, I got away with the test, because my motherstepped in for me. I passed the tests, it just took me more time than others. But this case bothered me.
It took me a long time to figure out what was wrong with me, what was the problem? Why is it difficult for me to read myself and even more difficult to write down my thoughts correctly so that I can be understood?! Then I found a video online. When I watched ittillthe end, I realized that the problem was not with me. I'm just fine! I can't use speech, but I've learned to read and understand texts. I have learned to write, although I make mistakes in words. But it turned out that there are 40% of people in the world who also have dyslexia and dysgraphia. Yes, I have a problem, but this is not a problem for those who want to understand me. I have always tried to be sociable so that I can be understood.
Now I can type texts with my eyes using an eyetracker and save these texts. I can use avoice assistant to voice the text that I wrote down. InYandex Translation app, you can use a voice to readand edit texts. Before that, my mother came up with different ways of communication between me and other people, she was my assistant. FirstI used cards, then typed letters on the keyboard with my nose, spoiltmy eyesight and twisted my nose. Then there was a stylus, it was fine with it, but it took a long time to hit the keyboard and mouse buttons, in general - like a woodpecker.
But the so called expert who tested me had much worse problems than mine - the UNWILLINGNESS to understand my situation, insensitivity and formalism! Sometimes there are such people on our way, unfortunately. We must have the strength to fight them and defend our rights! But thanks to her, I became stronger and reached rock bottom of the problem.
Now I know what's with my speech
I was haunted by that story. I began to study this topic and read a lot of materials about dyslexia. Dyslexia is recognized worldwide as a separate diagnosis that is givento completely different people with different conditionsbased on a specific examination. In my case, dyslexiaismysecond diagnosis! It is a result of cerebral palsy. It is with cerebral palsy that two main types of disorders occur: motor and speech. And among speech disorders in cerebral palsy, dysarthria comes first, but there is also such a conditionas dyslexia, and different types of it. CONCLUSION: in my case, the main diagnosis is cerebral palsy, and dysarthria and dyslexia are conditionsco-occuring withthe main diagnosis.
Because of cerebral palsy and hyperkinesia, my speech was being formed without the ability to pronounce sounds and words. I heard the speech addressed to me, I learned to understand it, but I could not answer. My mom communicated with me using cards and signs. Growing up, having mastered the alphabet from the cards, I learned to read and count, but I still could not pronounce words and sounds. Later I learned how to type with my nose, then with a stylus; much later a gaze control system using eyetracker appeared. I can communicate with people, I can write words and put them in sentences to express my thoughts. I can use the editor to remove spelling mistakes.
BUT it can be difficult to understand my speech so far for several reasons. First, due to the fact that I did not produce and still don’t produce speech, it happens that I write with errors in the endings of words, in prepositions. Second, it is difficult for me to choose words to express my thoughts. My vocabulary is alwaysexpanding, but not as fast as it takes to speak correctly. Third, it is difficult for me to immediately understand what I read in the text. Ihave to re-read and double-check my reading comprehension several times, or even better, hear an explanation from a person or a video explanation.
I try to make my written speech clearer to people. Now I write and express my thoughts much better than a year ago, but still sometimes it is not entirely clear, due to inaccurate selection and incorrect endings of words. I have to give my texts to friends for error correction (editing). And this text of mine has been edited so that you can read it and better understand the problem of guys like me!
Wishes for guys like me and their parents
You are not alone and, although you will have dyslexia and dysgraphia for the rest of your life, you can rush between raindrops to get where you want! It won't stop you! There are no people like me, but there are people with a similar problem. Look for solutions, they are there! I did it, hopeyou do it too!
P.S: So, what kind of conditionis that?
People with dyslexia, due to the peculiarities of their brain activity, perceive printed text, the shape of letters, the image of a word in a different way, it’s harder for them to learn the skills of writing and reading, which is why they have difficulties with education in general, because until recently it has beenthe printed text that was the basis of education.
And only now, finally, the system has begun to move a little and offer children and adults with dyslexia an opportunity to learn using not only books, but, for example, video-lessons and similar digital toolsin education.
Dyslexia, Dysgraphia and Dyscalculianeed to be talked about. Talked as much as possible to raise the general awareness of parents and educators. So that children who have difficulty coping with dictation or reading aloud at high speed are not called “lagging behind”(at best) and are not told that this is all due to laziness/ unwillingness/poor upbringing. Instead, parents and educators can help these children master the educational program by selecting the optimal method of presenting material, by creating additional assistive technologies in education, tutor support and pedagogical mentoring.
And some tips from my experience for people with dyslexia, their parents and teachers
1. To read any text, you can copy and paste it into Yandex Translator or Google Translator, click "Play" button, and the synthesizer will voice the text.
2. To read the text on a page of any site, select it, right-click and select the "Voice" function. To do this, you only need to install Yandex Browser.
3. To make it easier to read websites and various Internet resources, you can also download the OpenDyslexic program. If you use Chrome, you can add the OpenDyslexic extension to your browser.
Tips for Web content creators:
Accompany yourtext with its audio-version (like here).
