#RARETalk: meet Valentina Tomirotti )

The #RAREvolutionary life of Valentina Tomirotti, italian journalist and testimonial for the Boudoir Disability project.

1) Hi Valentina, nice to meet you and welcome to the RE(ACT) Community. Can you tell our readers something about you?

My name is Valentina Tomirotti, I am 34 years old and I live in Mantova, Italy. I was diagnosed with Diastrophic dwarfism, but I have always followed my passions: I’m a journalist, I write for work and during my free time.

2) Since 2012, you have been writing on Pepitosa Blog. Can you tell us what is the blog about? Which are the main topics you care about?

Pepitosa blog is my open space, the place where I can talk about all my interests, from fashion to social issues. I also write about my disability, with the aim to introduce it in a sphere of normality.

3) You are the testimonial for the Boudoir Disability project. What is it about?

Boudoir Disability is a project born in 2016. The idea came to me and to Micaela Zuliani, photographer for Portrait Femme. The photo’s shoots I am the protagonist of have the objective to enhance women’s beauty and uniqueness, addressing the issue of sensuality, often censured in people with disability.  We are used to give disability a meaning of closure, with this project we are trying to do the opposite and we have the ambition to open people’s mind.

4) What has this experience left to you?

This experience makes me feel more aware about my femininity, but in particular it made me understand that people should deeply get closer to the disability world. Disability doesn’t only mean healthcare, but also life. Many people are still writing to thank us and to share their personal stories. We are happy to have been the fuse for a new dialogue. The notice has begun viral, Vanity Fair has dedicated some pages to our project spreading the voice and this is a victory.

5) You describe yourself as a “social addicted”. Do you also use the digital media to collect information about your disease?  Are you part of online patients’ groups?­­­

I believe in the Internet power, but I think that there is no full awareness of the extent of this tool. Social media have been considered as a place for narcissistics to express themselves and the activities on these channels as a waste of time. In my opinion, social media should be used to increase awareness and to talk about serious issues. Even if I post a selfie with perfect hair and a lipstick matching the shirt, I’m still on a wheelchair and this image helps increasing the awareness of the disability.

I am a member of the Associazione nazionale mutilati invalidi civili, located in my town. I am not part of online patients’groups, I use Internet to create awareness more than to collect information, because I have learnt to live with my disease and I have no goals of improvements. It is not always simple, but I try to fully live my life, over and despite the disease.

6) Which are the biggest challenges you have to face every day?

One of the biggest challenges was to face the business world, it was difficult to assert and enhance my professionality considering my condition.

Not being independent in the place I live is very complicated. It is difficult to face physical and cultural barriers around the city. I have a project in my mind that I want to propose to the Administration of the City of Mantova. It is an online map of all the accessible and non-accessible places, which has the aim to draw up documents useful to simplify the Administration’s work and to create safe places for people with disabilities.

7) Future plans?

I’m writing an ironic book on the disability world to give it a semblance of normality. I don’t only talk about my life, but I also write about stereotypes and unpleasant cliché. Stay tuned!