“Accepting we learn”

Meeting on independent living

 

8th national meeting of the Italian Aniridia association

San Donato Milanese, Milan – Italy

18th – 20th November 2016

REPORT

Outside the cold, misty weather typical of a late-November weekend in Milan provided the setting for a wonderful gathering. Indoors in the hotel lounge bar the welcome drink created a warm, hearty atmosphere where a group of friends were happy to be meeting up again. We exchanged the latest news whilst sipping our drinks and enjoying some excellent Italian food. The mood was one of excitement as we prepared ourselves for our meetings, or rather, the new adventure that had brought us here from our homes located in different regions of Italy.

The meeting was organized by Matteo and Veronica, both young adults with Aniridia. The focus of the meetings was that of acceptance and of independent living for people with a visual impairment. Underlying this objective is a philosophy based in the intelligent acceptance of the life and its limits and also the learning strategies that can be developed to help overcome these limits.

More specifically, the aim was to support people at a moment in their life when their sight is worsening. A point where all previously known reference points are lost and there is no longer the option of functioning as one did before. The reality is that this stage requires strength, courage and awareness yet also new strategies and most importantly strong social skills that allow one not only to receive but to also offer mutual help.

The target audience was primarily the adolescents and young adults of our Association. However, it also provided a great platform for parents of young children to ask questions, learn strategies for their children and most importantly to hear other peoples stories.

The novelty of this meeting was the methodology we adopted: we forgot about the lectures by experts where the audience is passive and can just take notes, and instead we got involved. We all stepped onto the stage, moved out of our comfort zone, challenged our beliefs, questioned, shared, played, experimented and laughed together. We let our defenses down and with a lot of self-irony had great fun.

To facilitate this process of self-empowerment, Matteo used the metaphor of the X-Men: the idea that, as the Marvel’s superheroes, people with Aniridia too are mutants. The connection being that with awareness and acceptance each individual can choose to find and use their superhuman abilities.

On Saturday morning we explored with Veronica all the ‘voice’ tools that can facilitate daily life: from interactive TV’s to vocal thermometers; from talking kitchen accessories and bathroom scales to vocal calculators; from digital pens that can read labels on jars to colour recognition pens for clothing.

Matteo provoked our thinking by taking us back to our childhood and video games we played with the best csgo mouse. He helped us recall the skills we built up in finding combination moves (combos) for many of our video games. His explanation becoming clearer as Veronica walked us through the reality of sight loss and how step by step new combos had to be learnt. The reality being a knowledge of tools that initially rely on sight, such as magnification, to a better understanding of tools that can be used with total vision loss. Examples were given such as memorizing your computer keyboard, learning a series of key combinations, commands, sequences, tricks etc. Allowing oneself to navigate with ease, often faster than sighted peers. Making the best use of technology allows for more independence, which in turn leads to higher self esteem and therefore a better quality of life. The list of useful keyboard combinations will be available on our website.

We discussed the importance of mobiles. “Mobile first”: many international studies state that in the future smartphones will become the main technological devices for work and daily life. Advanced screen-reading technologies, such as Voice Over (integrated on Apple devices) or Talk Back (on Android), together with artificial intelligence software, like Siri on iPhones. A simple tap can book a flight, navigate a street and so on.

Lunch too brought us together as we experienced the difficulties of a buffet.

This experience helped push people out of their comfort zones highlighting how often the orientation skills are tested or senses used. Most importantly it highlighted the importance of asking for help and being able to approach people in a way that made the information they gave helpful. Too often embarrassment or fear stop us from asking for help. The buffet provided an opportunity to surpass this hurdle and to face and overcome this barrier, discovering (as quite often happens), that the barrier had been created in one’s mind. On the other hand sighted people were also given the chance to learn how to give “smart” and detailed indications, avoiding unnecessary information, and were also able to confront their own unease and fear of not being able to help. After all the common aim was not just that of learning but also about sharing an enjoyable lunch.

Saturday afternoon brought us to the core of our meeting: self empowerment through the strengthening of our senses and our logical reasoning.

We were offered concrete examples of how we could combine logic with our senses (hearing, smell, touch, taste) to address a lots of daily situations: where to find vegetables in a supermarket; where to find the cashier; the toilet; the way out; how to cross the street and so on.

The floor was opened up for participants to share their personal experience and the techniques they’ve developed “in the field” to manage situations that may seem impossible or very difficult for a visually impaired person: cooking; tiding up an apartment; shaving or making up; using the public transport; studying, working and so on. All this is achieved through trial-and-error situations and a continuous and determined striving to overcome obstacles.

We even heard Silvia’s story. That of a blind mother with a visually impaired daughter. We heard how she fed, changed and followed her daughter as she crawled, walked and now attends school. We were all moved with admiration as she spoke of sewing a bell to her daughter’s clothes to be able to follow her as she crawled around the house.

On Sunday morning we talked about independent living through the use of a white cane/stick and a guide dog. We had the opportunity to learn some techniques of using a white cane, combined with the LOGES (an Italian acronym for a system of tactile paving for the visually impaired, which literally means a line of orientation, guidance and safety), used in railway stations, airports and in public offices.

In spite of all the difficulties (paths leading to closed offices, signs inappropriately put on the path, and so on), the white cane cannot only be an aid, but a tool of self defense against obstacles and occasionally idiots. An extension of one’s senses that through half-moon movements on the floor can create the infinite magic of independent mobility.

The arrival of Ulma and Nelson, two wonderful guide dogs, introduced us to the experience of creating independent mobility with the help of a non-human living being. We were also introduced to a unique and intimate relationship. Samuele Frasson, a representative of the national commission for guide dogs, helped us understand the procedures for getting a guide dog, the requirements, the regulations about accessing means of transport, public offices, restaurants and other public places and workplaces. Then, through hands on experiential work, we all learnt some techniques for dealing with a guide dog.

The moment to say goodbye arrived all too soon as we were immersed in all this new learning and sharing. Sad but manageable as we already planned a further step on our journey of acceptance, learning and improving… knowing that the ‘programming’ had already begun!

 

Barbara, Corrado and Matteo

Milan, November 2016