Investing in oneself to get forward

The interview below was written in 2017 and just a snapshot. I have no idea how the interviewees are doing now. 

Both Teresa Vaz and Norberto Sousa Sousa have a visual impairment. Teresa suffers from low vision. In the end, she will turn blind. Norberto is already almost completely blind. I spoke to both of them at the office of Fundacao Raquel e Martin Sain, a small organisation for the blind in Lisbon that keeps contact with other institutions and organisations for the blind in Portugal and abroad. Vera Repagao who works for the organisation translated and completed wherever necessary. 

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                                                                         From left to right: Teresa, Norberto, Vera

Teresa inherited her visual impairment from her father, but the family wasn’t aware of it until she reached the age of four. ‘Before, I wasn’t able to see anything. After I got glasses things improved, only the problem was I couldn’t stand the glasses.’ At her current age of 51 she can only see a few things with her left eye. In her right eye she’s wearing a lens. ‘I most of all see shades. I notice my sight is getting worse. I feel I have to overcome difficult situations every day. Fortunately I have much support of my three children.’ Teresa is divorced and has started her own association, AAICA – Associação de Apoio e Informação a Cegos e Ambliopes (in English: something like Association for Support and Information of the Blind and people with Low Vision).

Norberto grew up on Madeira and already couldn’t see much as a child. From the age of 18 he has been nearly blind. ‘In my youth I wished to become an architect, but that turned out to be impossible because of my sight. I then followed IT studies, worked in Germany for two years, gave web accessibility trainings back in Portugal and now work for Fundacao Raquel e Martin Sain.’ Norberto is 37 years old and married. His wife is also blind.

Employment and financial situation

Teresa worked 28 years as a shop manager. She had to retire, because of her declining sight. She decided not to sit still and started her own association. Twenty volunteers are involved. They answer to questions people from all over Portugal ask. ‘I refer people who are getting blind to rehabilitation centers and give other practical information. I don’t want them to have to search for answers to their questions like I had to. In Lisbon, I visit schoolchildren to tell them how it is to be blind and how they can help the blind. I get no financial support by the state. Very few blind people in Portugal are employed, but as you know employment is a big issue in this country in general.’

Norberto had difficulty to convince people that he’s able to work. But, there’s also another side why employers don’t hire people with a disability quickly, he thinks. ‘In my opinion, there are many people with a disability who don’t want to work. For them, financial support by the state is enough. They prefer an easy life.

‘After my years in Germany, I gave web accessibility training sessions to companies and institutions in order to convince them that they should make their websites accessible for disabled people. It only works when they build a site that is completely accessible, not just partly. Not every company sees the value of doing that.’

Vera also gives a remark with regard to disabled people not wishing/being able to work: ‘Most disabled people don’t invest much in studying, because of the misbalance between study and work. People with a disability who have an university study end up as a phone operator. Success stories are an exception to the rule. When you travel with the Lisbon metro, you will see blind and other disabled people begging.’

People with a disability don’t receive a big sum of financial support from the state. Without help from family or associations they are not able to survive. Because of their low income, they can profit of special fares for electricity and water.

Interrelation and accessibility

Both Teresa and Norberto agree that non-disabled people in Lisbon look with pity to their disabled fellow citizens. Norberto gives a concrete example. ‘One time on the bus someone asked me whether I could communicate. You must know that my father had a bar on Madeira and that I helped in the bar, despite my visual impairment. People who knew me interacted normally. But the ones who didn’t know me, became confused when I looked at them differently. So, the question on the bus was not that strange to me.’

Despite their visual impairment and the steep Lisbon streets, Teresa and Norberto don’t face too big accessibility problems and they manage to get everywhere without the help of a guiding dog. Teresa: ‘I don’t want a guiding dog in my house. It would give me the feeling that I have to take care of the dog instead that the dog would help me. I adapted my home to my needs with small strategies. For example: my washing machine chooses all the programs. I was married for 32 years. I divorced, because my former husband became too protective.

‘I’ve got problems with glass doors because of the contrast and I often don’t see where the street ends, which makes I fall. The city of Lisbon is trying to improve the accessibility for the blind. It will take a long time’

Norberto:  ‘I have no difficulty travelling by public transport. Poles in the street or cars which are parked on the pavement are a difficulty when you walk with a cane. People don’t respect each other anymore and just park their car where they want to.’

All three agree children are more open and helpful towards the disabled than adults. Vera adds an example. ‘My cousin has a problem with her leg. As a kid I didn’t see it as any problem. It was only when I went to school I realised the difference between me and her. There’s no real inclusion in main stream schools. Children with a disability are in the same class with non-disabled children, but the teacher has no background to help them properly. With regard to a blind child for instance: the teacher can’t use braille. There should be someone present as a support to help the child with a disability with specific things.’

The emotional impact of a visual impairment 

When one is blind or knows it will happen one day, it’s important to invest in oneself in order to cope with it emotionally as good as possible. Both Norberto and Theresa did.  

Norberto: ‘I learned to read braille, which is not easy. A text in braille has no physical end. You don’t have an idea where you stopped reading. At the beginning, it took me ten minutes to read one single line. Concentration is important in this. I didn’t give up. Nowadays, more and more blind people rely on computer software that expresses a text in spoken word. They don’t learn braille anymore. It’s easier, but one doesn’t have to overcome the disability that way. People are not being challenged and that is a pity. I still get frustrated when something takes me a lot of more time compared to people who can see.’

Teresa: ‘People should invest in taking precautions when they know they will get blind. Not only practically, but also psychologically. I get much support of my children, two daughters and one son. They are (almost) grown-up and can cope better with my disability than I do. The oldest one helped me from when she was young and learned the others what to do. It’s difficult not to see them. I recognise them by their voice and can tell whether they are sad, tired or happy. Touching is very important to me. I hug my children a lot. ‘

Music is important for them. Teresa likes Portuguese guitar player Carlos Paredes. I chose Verdes Anos. .

Copyright text and pic: Johan Peters, June 15th 2017 - ...