Who are you and what is your relationship to OI?

My name is Giorgia Meneghesso, I have type IV OI, with a little bit of overlapping genes with Ehlers Danlos. I am the regional representative of the Italian OI-association (As.it.OI) in Lombardia, and the third OIFE delegate for the Italian OI-organization As.it.OI.

What do you do as an activist?

As an activist I try to make people aware of ableism and all the discriminations it carries with it through my Instagram page. I created this page years ago, to share contents as I am a singer. I’m also a singing teacher making singing exercises suitable for all body types, and I’m also concerned about accessibility of concerts venues. During the first lockdown in Italy, I decided to start conveying information about ableism and being an activist.

I started being contacted by associations and other influencers. Last summer, I had the chance to participate in a festival in Italy called “Festival of the beautiful things” done by the Collective “Aware – resilient beauty”. I did different Instagram directs, on accessible tourism, the importance of language and of using the right terms regarding disability, on being an ally etc. Now I am proposing myself as disability consultant for schools, companies, associations etc. Soon my website will be online, and I will start a collaboration with my municipality.

Which topics are you engaged in?

Ableism is the root cause of all the other topics, so in the last months I’ve spoken about all of them. Recently I had the chance to do an interesting Instagram direct with a Vanity Fair Italy online journalist about sex and disability, maternity, and the double discrimination to which women with disabilities are subjected. We will continue this soon. After that, I have been contacted by other influencers involved in the fight for the recognition of invisible disabilities and we did an Instagram direct about this theme and about diseases like vulvodynia, or pudendal neuralgia. I am writing an article for a group of feminist disabled women, so in the future, my Instagram page might be focusing more on feminist topics and sexuality.

How or why did you get involved as an activist?

I grew up in a very discriminating context. I’ve always felt a sense of discomfort, and I’ve always thought the problem was me. I was taught by my family that I had a different body to be ashamed of, that I will not be able to go to the university, have a decent job, live on my own etc… Over the years I’ve understood that the problem was me facing a society that wasn’t offering me all the instruments I needed to live my life completely and to have the freedom to decide for myself. But I didn’t understand that this feeling was due to something that wasn’t depending on me. During the first pandemic lockdown in Italy, I had the time and the chance to study Disability Studies, which is a recent study discipline that analyzes disability as a social, political, historical and cultural phenomenon. I started to follow different activists in Italy and all over the world. I thus became aware that the monster I had been fighting against during my whole life, has a name: Ableism. I studied a lot, and during the last year, I decided it was time for me to express my voice.

What are you fighting for?

I think that we will never be completely overcome ableism, at least in my lifetime. But many things are changing thanks to all the activists fighting all over the world. Change is also thanks to the opportunities of social media, that helps spreading information from activists. I believe that awareness, knowledge and sharing are the keys to the solution, and I am fighting to spread them.

If you woke up tomorrow and the world had changed for the better – how would it look like?

I think we are living in a very complex world, with so many facets, and that thanks to the social media we are becoming more aware of them. Our society is changing but we are still going through a period of transition. This will perhaps lead to a better world and a more evolved humanity with no need to ask for accessibility information, with easier access to health care, education, job careers, and in which also bodies like mine will be considered sexy.

What can we as OI-organizations contribute with to make the situation improve?

It will be useful to talk more about ableism. I realized that many disabled people do not know about its existence and do not recognize the subtle discriminations to which they are subjected. Many are accepting them passively, but at the same time, feeling that something is wrong. I am receiving messages in which people thank me for giving a name to their feelings. I therefore know that this is the right way to follow.

And what can we do as individuals?

We all have so many things to deal with in everyday life and we cannot fight against everything. Sometimes it seems as if we are fighting against windmills. I think the best way is to try to explain as much as possible to non-disabled people, to educate them, to be aware of the discriminations that are still existing and to explain to them how they can become an ally. This includes the easiest things as avoid parking in places reserved to the disabled and avoid using mental illness as jokes. It also includes understanding the difference between looking at a disabled person and considering him/her for what she/he is in reality, without pietism or heroism. And last but not least, to recognize and fight with us against violence and denied rights.

This interview was originally published in OIFE Magazine 1-2022.

Interested in reading about other activists with OI? Take a look at the blogpost Jeanette Chedda: Fighting for Diversity!