Philippe Racaud, deaf since birth, gradually lost his sight. He tells us how this double sensory deficiency impacted his school and, subsequently, professional life.
- Philippe Racaud was diagnosed with deafness at the age of three and presented with daytime and nighttime visual impairment at age 22 or 23, which led to secondary deafblindness.
- The sixty-year-old suffering from Usher syndrome has had hearing aids since he was little and had to wear glasses with a red filter to protect his eyes from ultraviolet rays.
- Now retired, after having chaired the National Association for DeafBlind People, the patient does not have a human aid package offered to deafblind people, because he always manages to get by.
“I was born deaf, but it was not until I was three years old that my deafness was detected. As soon as the diagnosis was made, I was fitted with a hearing aid and benefited from speech therapy sessions,” remembers Philippe Racaud, now 62 years old. Although his first school years went relatively well, it was from CE2 that he began to encounter difficulties in following classes. “My parents wanted to enroll me in a school for deaf children. After doing some research, they eventually abandoned the idea because they were often boarding schools, so I would be separated from them. In addition, communication in these establishments was only through sign language. My father and mother wanted me to continue communicating as I did in my primary school. However, they did not give up. managed to enroll in a school Parisian, more precisely in the 15th arrondissement, where I was admitted to a so-called ‘integrated’ class. It was a classic class mixed with a hearing-impaired and deaf class.
Night vision deficiency, deafness: “Usher 2 syndrome” is suspected
A few years later, the young patient presented, at the age of 12 or 13, with a deficiency in night vision. “In the 1970s, my parents bought a house next to which there was a workshop. To get there in the evening, I walked along the walls of the house. My father and mother found this strange and were upset. so spoke to my speech therapist, who followed me until second grade. She directly suspected Usher syndrome 2”,. confides the retiree. It is a rare disease, which combines hearing loss and vision problems. “Although this pathology is of genetic origin, neither my parents nor my sister suffered from it. However, my maternal grandfather suffered from age-related macular degeneration (AMD). And today, my daughter is carries genes involved in Usher syndrome, but the disease has not occurred.” Due to this suspicion of a rare disease, in the context of which “one area of the chromosome segment is not in the same place as the others”, he must wear glasses with a red filter to protect his eyes from ultraviolet rays. “At the same time, I had to make sure I had a healthy lifestyle and good morale, it was very important.”
Since Philippe Racaud has severe hearing impairment and visual impairment, effective compensation for sensory losses is not possible. A situation which results in a disability, called “secondary deafblindness”, recognized by the government since April 2022. “It was at that time, in the 70s, that I heard that the National Association for DeafBlind People (ANPSA)for which I was president for six years, was founded. Its creation was made after the epidemic of rubella, a contagious infection caused by an RNA virus. According to scientific facts, if it is contracted by a pregnant woman during the first trimester of pregnancy, the hearing, vision and heart of the fetus could be affected. During the second trimester, hearing and vision could be affected. During the third part of pregnancy, vision could be impacted.”
“Because of my disability, I only worked 30% of the time”
After obtaining his baccalaureate in the 15th arrondissement, the sixty-year-old, who currently travels back and forth between Paris and Villeurbanne, continued his studies and then set foot in the world of work. “At 22 or 23 years old, I realized that my visual acuity had decreased further. Previously, it had decreased by 3/10 and again by 5/10. My field of vision was reduced and I saw white spots. At that time, I had my license revoked.” Working as an electronics engineer at Thales, he encountered some problems linked to his visual impairment. “As my vision deteriorated, I had to tap the devices to find the buttons. Additionally, I found it difficult to measure and write. So I was provided with a vision enlarger. Then, I was offered a career change. I trained at the Paul and Liliane Guinot Professional Training Center in Villejuif and became a senior technician in management IT. born “I only worked 30% of the time. However, after a while, a member of human resources fired me because he thought I wasn’t working enough, even though he had no right to do so.”
After his dismissal, the deafblind patient, followed at the Quinze-Vingts national ophthalmology hospital center in Paris, benefited from the Social Security disability pension. Since 2022, the date on which Philippe Racaud was finally diagnosed with Usher syndrome, people with deafblindness can benefit from a human assistance package of 30, 50 or 80 hours per month depending on their disability situation. . “This is not my case, because I did not make the request. It is too complicated with my travels between Paris and Lyon. And then, I have always managed to get by, whether for professional life or personal, and that’s still the case!” When he worked for ANPSA, he used software that allowed him to enlarge the characters and he wrote in white on a black background. “I could do three to four meetings a day. Wearing hearing aids, I just had trouble keeping up when there was too much noise.”
“It is society that must include itself in disability and not the opposite!”
On a daily basis, he pays attention to the weather before going out and moving around. “The weather must not be too sunny and it must not be too gray, because otherwise I see everything in purple, except the pedestrian crossings which are brightly lit. I am also unable to determine the color of the cars” , says the 62-year-old man. At home, he uses devices, for example an induction hob, with buttons. “To read or write messages or e-mails, I use Siri on the iPhone, it’s very practical. I can do several activities of daily life, it’s important for me. When you help or accompanies an adult with a disability, you must listen to and take into account their requests and let them do it, rather than doing things for them.” specifies the retiree who hopes that deafblind people will soon be able to have the “same rights” than others, like “access to culture and leisure. It is society that must include itself in disability and not the opposite!”
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