We’re back with the second story of our ‘Empowering Families’ campaign, inspired by our upcoming conference taking place in Turin on 20-21 October.

This week, we hear from Cecilia Sorpilli, pedagogist and professional counsellor from Ferrara, Italy. Cecilia will be a speaker at our conference, you will find her in Panel 1.

Read our conversation as she reflects on the academic journey that has brought her where she is now, the impact of her job on the families she supports, and how her own disability has become a resource for connecting with others.

What was your experience of going to university? Did you have to face any obstacles?

Cecilia: Yes, a very big one.

My dream was to study psychology, but the university in Ferrara did not offer the course. This meant going to Bologna or Padua, but travelling to either of these cities regularly was impossible because both my parents were working.

The social worker who was supporting me never told me that I was entitled to an independent living allowance. If I had known, I could have hired a driver or even considered living away from home, which would have been a great opportunity for independence.

So, I ended up choosing a different course over a logistical technicality. After completing my bachelor’s in Educational Sciences in Ferrara, I pursued a master’s degree in Bologna. My father had retired by then and could drive me to university.

I found Ferrara to be way more accessible for students with disabilities. The disability service of the university in Bologna was completely disorganised and there was very little cooperation from professors. They weren’t willing, for example, to turn exams from written to oral if the classroom wasn’t accessible. So, I had some unpleasant experiences.

After graduating, I was supporting projects for vulnerable parents, and at the same time I began a three-year counselling school in Ferrara. I completed it and became a professional motivational and integrated counsellor. Meanwhile, I also started working on inclusion of pupils with disabilities and migrant backgrounds in Ferrara, and from there I began to work much more in the disability field.

Then I thought: “I’ve come this far, I might as well keep going”, and I enrolled in the Psychology bachelor’s in Padua. Both my parents were retired, my husband could drive me as well, and remote learning had really taken off after the pandemic. All this was hugely helpful for me.

The real obstacle was at the beginning: not having support from my social worker. If I had gone straight into Psychology, it would have given me different economic stability compared to now, and the chance to achieve my dream. I really struggle to come to terms with this. I don’t know if I’ll ever fully process it, because I feel I was deprived of a right, and by a service whose duty was to inform and support me.

You work a lot with families of people with disabilities. When these families start a counselling journey with you, do they have preconceptions about disability?

Cecilia: No. Probably because parents are often thrown into it in a traumatic way. Still, what I see during the journey with these families is that despite the fatigue, exhaustion, and fears, they manage to reframe their life experience.

When a diagnosis is given, parents are always told what the child will not be able to do, never what they might be able to do with the right support. Therefore, parents start their counselling with this terrible burden. But they quickly discover many things their children can do despite the difficulties. That’s why, when I train teachers or educators, I always say: “Your role is to help parents understand what their children can do”. Even in the most complex situation, there’s always some margin for the person to self-determine and acquire new skills. And that’s what families need to know.

Is it difficult for parents to come into contact with people like you who can offer support?

Cecilia: Once families receive the diagnosis, they’re left to fend for themselves, at least here in Ferrara. What’s really missing is someone to accompany these families in a truly comprehensive way.

Families get bounced around from one service to another, always with partial information. If they’re lucky enough to join self-help groups, they meet other parents living similar experiences and exchange information. Otherwise, they’re completely left alone.

In my experience, the fact that I live with a disability myself is a strength. I can offer parents a child’s perspective that they often can’t get from their own children, especially if we’re talking about cognitive disabilities or non-verbal children. My motor disability has become a resource. Sometimes, sharing my own story and lived experience can be very useful when working with these families.

Based on your professional experience, what do you think families need to feel supported and recognised in their role?

Cecilia: This question makes me think of the manifesto of the European Network on Independent Living. It says that what people with disabilities and their families want is the possibility of self-determination.

For a person with a disability, it means deciding whether they want to be assisted by family members or by a third person.

For a family member, it means being able to decide whether or not they want to become a caregiver, and if so, in which capacity. To have this choice, you need services or financial support that allow you to delegate your relative’s care to someone else.

Right now, in Italy, the real welfare system for people with disabilities is the family. There needs to be guidance, especially for parents, to learn to delegate their child’s care. Otherwise, parents and relatives end up burning out, neglecting their own health because they prioritise caring for their child.

Another issue is the almost constant infantilisation of people with disabilities. Of course, all parents tend to see their children as children forever, but with disability this is even stronger. And when care only comes from family members, it becomes harder for the person with a disability to see themselves as an adult. I work with people who have severe motor disabilities but good cognitive skills, yet they can’t say what they like or don’t like, because no one has ever asked them.

Families express the need to be supported, to be relieved from a heavy care load, and to have a life of their own. But at the same time, they’re terrified of delegating. They give up their own identity, they stop being husbands and wives, men and women, friends. And it’s not by choice, but because they have no alternatives.

So, in my opinion, it’s crucial to work on self-determination for people with disabilities and for caregivers. Caregivers need support to realise that their wellbeing and individuality matter, and that over time, they can trust third parties. This avoids living in constant fear of what will happen when they are no longer able to manage the care load.

Does your work help create connections between families and a sense of community?

Cecilia: Yes. This happens especially in the mutual support groups I facilitate. Families of people with disabilities are often isolated because of the care load. They also see their friends who don’t experience disability first-hand gradually drift away.

Parents actively look for other families with similar experiences, and very strong, meaningful bonds are formed. From these, associations, foundations, and family networks emerge.

Do you think this also helps to raise awareness of disability in general?

Cecilia: Yes. All these associations organise events open to the wider public. That creates opportunities to meet and get to know each other.

I also run workshops in schools where we bring people with disabilities, siblings, and parents to classrooms to talk about disability. Students can ask them questions directly. I always say: a disabled person is, first and foremost, a person. And it’s important to have the chance to get to know each other. Here in Ferrara, at least, associations are very active, and the community responds positively.

I love when kids ask me why I have something on my nose or why my back is crooked. Once I explain it, for them it’s all fine. But you can see the parent turning red, embarrassed, because their instinct is to say: “Don’t look, don’t ask”. But no, this is wrong. Kids should ask and know. Otherwise, disability stays in the realm of taboos, and that doesn’t help anyone.