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27 October 2021

This fantastic interview was provided by,  Sofie Kim, a member of our Friends of CFA Australia program. Thanks to both Sofie and Silvia for their time in undertaking this interview for CFA Australia to further highlight how people with disability engage with digital content.

Silvia holding up a food

image taken in Girona i Perpinyà

Question:

Tell us a little bit about yourself.

Where you are from, where you are currently living, and a little bit about your condition, Osteogenesis Imperfecta or Brittle Bone Disease 

Answer:

I’m from Barcelona, where I have always lived. I have Osteogenesis Imperfecta (OI), a rare disease colloquially known by brittle bone disease.

Question:

As Osteogenesis Imperfecta is quite rare, could you explain a little about it?

Answer:

It is permanent and has no cure, but there are currently treatments to improve the condition of those who suffer it. It can be inherited or occur spontaneously, as in my case; there is no background in my family, but I can pass it on.

The main feature is the fragility of the bones, which have a manufacturing defect in the collagen, a “genetic error” that makes them very thin and break very easily. Apart, they twist and do not grow. OI has many grades and variability. Depending on the grade, other symptoms may occur such as deafness (due to damage of ear bones), weakness of ligaments, hyperlaxity, spinal deviations, basilar invasion (due to damage of neck bones), short stature, dentinogenesis imperfecta (poor quality teeth and easily breakable), etc.

Question:

Tell us a little bit about Turisme Facil.

Answer:

Turisme Facil was created in 2002 (date of its inauguration) with the idea of sharing with many people, routes and trips around Catalonia without or with minimum architectural barriers. In 2002, there were very few people dedicated to publish this kind of information. Now luckily, and with the ease that internet gives for sharing, it’s much easier to find such information, and there are currently many bloggers on the field.

Question:

What prompted you to create Turisme Facil?

Answer:

The lack of reliable and updated information.

Question: 

Was this your first foray into sharing your love of accessibility?

Answer:

Yes, networks allow you to share and this is fabulous.

Question:

In regards to assistive technology, what helps you with your everyday life?

Any kind of aid. 

Answer:

I use a manual wheelchair with an electric third wheel that I can put on and take off when I want and that gives a lot of independence. I have had it for eight years and since then other brands have come out. Competence is always good to lower the prices because price is the main problem associated by this type of assistive technology.

Question:

Do you find it challenging to navigate websites?

Answer:

No, because I don’t have serious visual or cognitive problems.

Question:

Is there any sort of technology that you wish you had (perhaps it is not invented yet) that would help you even more?

Answer:

I would like to have a kitchen adapted to my needs. Obviously, they exist (with furniture that moves up and down for example), but as usual, the price is the biggest issue.

Question:

As a lover of the arts, do you find that festivals have become more accomodating towards people with disabilities?

Answer:

Yes, nowadays auditoriums and also outdoor festivals always take into account place for people in wheelchairs, at least where I live.

Silvia sitting on a wheelchair looking at a painted glass art

image taken in Museu d’Art a Cerdanyola del Vallès. Modernisme i Art Contemporani

Question:

Any advice for other people with the Osteogenesis Imperfecta?

Answer:

To be cautious but not afraid. One thing is to be careful with falls or blows and another very different is to stop doing lots of things for fear to “what if”. Fear is a bad companion.