“We are a couple of two deafblind persons who have Usher syndrome. We’ve been married for 12 years, living in Sao Paulo, Brazil. I (Sofia) use a hearing aid that helps me recognise sounds and noises. Carlos Jorge is totally deafblind.
“In the first building we lived in, other residents didn’t know how to communicate with us. Carlos uses tactile signing. I use Tadoma and tactile signing.”
“When we fell in love, Carlos’s family in Rio de Janeiro city were worried and scared because they considered that it could be very difficult for two persons with deafblindness to live together. My teacher explained to them that couples can live independently together and then they accepted.”
“My family was also worried and wanted me to forget that I was in love. A teacher in Sao Paulo convinced them otherwise. I went to Rio de Janeiro and met the family and they were more relaxed with the idea.”
“We had a lot of support from friends to book the church, talk to the priest and explain why we needed to be with interpreter-guides during the ceremony.”
“To become more independent and have autonomy, we had training and adapted the home appliances and devices so they were more accessible for us, we know how to cook, clean, etc.”
“We have the support of the doorman, neighbourhood, friends and relatives that bring us to the church, the supermarket, the bank and we take a known taxi to go to work. If there are conferences or government meetings, we use the government transportation service for persons with disabilities. When we need to go to the doctor or have a medical test, we go with an interpreter-guide.”
“One of the most important things when we got married was getting a little puppy. She found out that we were deafblind and helped us to notice noises such as the phone ringing, someone knocking on the door or ringing the doorbell.”
“We knew it wasn’t easy to live by ourselves, but we needed to adapt ourselves, especially in urgent and dangerous situations.”